My Demyelination

25 Fascinating Love Facts

2009-01-22T09:40:00.002-05:00

I don't know...maybe I have been thinking about Valentines Day or the fact that Peter scared the hell out of me last weekend camping on the Appalachian Trail in a freaking winter storm with out cell or GPS service, but this just seems right today- so here ya go...

25 Fascinating Love Facts
By Laura Schaefer

Love is mysterious, fascinating, and when you find it with the right person, there's nothing better. Here are 25 surprising love facts to puzzle over and embrace.

Love is a many-splendored thing … and a very surprising thing, too. As if you needed proof of that, here are 25 funny little facts about love. Study them, scratch your head over them, and share them with someone you fancy.

1. Men who kiss their wives in the morning live five years longer than those who don't.

2. People are more likely to tilt their heads to the right when kissing instead of the left (65 percent of people go to the right!)

3. When it comes to doing the deed early in the relationship, 78 percent of women would decline an intimate rendezvous if they had not shaved their legs or underarms.

4. Feminist women are more likely than other females to be in a romantic relationship.

5. Two-thirds of people report that they fall in love with someone they've known for some time vs. someone that they just met.

6. There's a reason why office romances occur: The single biggest predictor of love is proximity.

7. Falling in love can induce a calming effect on the body and mind and raises levels of nerve growth factor for about a year, which helps to restore the nervous system and improves the lover's memory.

8. Love can also exert the same stress on your body as deep fear. You see the same physiological responses — pupil dilation, sweaty palms, and increased heart rate.

9. Brain scans show that people who view photos of a beloved experience an activation of the caudate — the part of the brain involving cravings.

10. The women of the Tiwi tribe in the South Pacific are married at birth.

11. The "Love Detector" service from Korean cell phone operator KTF uses technology that is supposed to analyze voice patterns to see if a lover is speaking honestly and with affection. Users later receive an analysis of the conversation delivered through text message that breaks down the amount of affection, surprise, concentration and honesty of the other speaker.

12. Eleven percent of women have gone online and done research on a person they were dating or were about to meet, versus seven percent of men.

13. Couples' personalities converge over time to make partners more and more similar.

14. The oldest known love song was written 4,000 years ago and comes from an area between the Tigris and Euphrates Rivers.

15. The tradition of the diamond engagement ring comes from Archduke Maximillian of Austria who, in the 15th century, gave a diamond ring to his fiancée, Mary of Burgundy.

16. Forty-three percent of women prefer their partners never sign "love" to a card unless they are ready for commitment.

17. People who are newly in love produce decreased levels of the hormone serotonin — as low as levels seen in people with obsessive-compulsive disorder. Perhaps that's why it's so easy to feel obsessed when you're smitten.

18. Philadelphia International Airport finished as the No. 1 best airport for making a love connection, according to an online survey.

19. According to mathematical theory, we should date a dozen people before choosing a long-term partner; that provides the best chance that you'll make a love match.

20. A man's beard grows fastest when he anticipates sex.

21. Every Valentine's Day, Verona, the Italian city where Shakespeare's play Romeo and Juliet took place, receives around 1,000 letters addressed to Juliet.

21. When we get dumped, for a period of time we love the person who rejected us even more, says Dr. Helen Fisher of Rutgers University and author of Why We Love. The brain regions that lit up when we were in a happy union continue to be active.

22. People telling the story of how they fell in love overwhelmingly believe the process is out of their control.

23. Familiarity breeds comfort and closeness … and romance.

24. One in five long-term love relationships began with one or both partners being involved with others.

25. OK, this one may not surprise you, but we had to share it: Having a romantic relationship makes both genders happier. The stronger the commitment, the greater the happiness!

Laura Schaefer is the author of Man with Farm Seeks Woman with Tractor.
http://lifestyle.msn.com/relationships/articlematch.aspx?cp-documentid=10416019&GT1=32023

So it has been awhile....

2009-01-03T21:57:00.004-05:00

I am not sure where to start so I am not even going to try and fill in the blanks for the last few months. I will just say that I have been seeing a great therapist, the kids are healthy and happy and have greatly enjoyed being home for Christmas break and Peter is still trying to fit 26 hours into a 24 hour day BUT that is better then trying to fit 30 hours in...

Things have been hard but we are working on it. I have had to come off of the Avonex injections and that has been scary... I am feeling somewhat better so that is good but the anxiety that comes with not knowing what is going to happen with the MS now sucks...
At least with the Avonex I felt like I had a safety net of sorts...

Anyways symptom update:

Visual Symptoms

Symptom

Description

Optic Neuritis

Blurred vision, eye pain, loss of color vision, blindness

Diplopia

Double Vision

Nystagmus

Jerky Eye Movements

Ocular Dysmetria

Constant under- or overshooting eye movements

Movement and sound phosphenes

Flashing lights when moving eyes or in response to a sudden noise

Afferent Pupillary Defect

Abnormal pupil responses

Motor Symptoms

Symptom

Description

Paresis, Monoparesis, Paraparesis, Hemiparesis, Quadraparesis

Muscle weakness - partial or mild paralysis

Plegia, Paraplegia, Hemiplegia, Tetraplegia, Quadraplegia

Paralysis - Total or near total loss of muscle strength

Spasticity

Loss of muscle tone causing stiffness, pain and restricting free movement of affected limbs

Dysarthria

Slurred speech and related speech problems

Spasms, Cramps

Involuntary contraction of muscles

Hypotonia, Clonus

Problems with posture

Myoclonus, Myokymia

Jerking and twitching muscles, Tics

Restless Leg Syndrome

Involuntary Leg Movements, especially bothersome at night

Footdrop

Foot drags along floor during walking

Dysfunctional Reflexes

MSRs, Babinski's, Hoffman's, Chaddock's

Sensory Symptoms

Symptom

Description

Paraesthesia

Partial numbness, tingling, buzzing and vibration sensations

Anaesthesia

Complete numbness/loss of sensation

Neuralgia, Neuropathic and Neurogenic pain

Pain without apparent cause, burning, itching and electrical shock sensations

L'Hermitte's

Electric shocks and buzzing sensations when moving head

Proprioceptive Dysfunction

Loss of awareness of location of body parts

Trigeminal Neuralgia

Facial pain

Coordination and Balance Symptoms

Symptom

Description

Ataxia

Loss of coordination

Intention tremor

Shaking when performing fine movements

Dysmetria

Constant under- or overshooting limb movements

Vertigo

Nausea/vomitting/sensitivity to travel sickness from vestibular ataxia

Speech Ataxia

Problems coordinating speech, stuttering

Dystonia

Slow limb position feedback

Dysdiadochokinesia

Loss of ability to produce rapidly alternating movements, for example to move to a rhythm

Cognitive Symptoms

Symptom

Description

Depression

Cognitive dysfunction

Short-term and long-term memory problems, forgetfulness, slow word recall

Mood swings, emotional lability, euphoria

Bipolar syndrome

Anxiety

Aphasia, Dysphasia

Impairments to speech comprehension and production

Other Symptoms

Symptom

Description

Fatigue

Uhthoff's Symptom

Increase in severity of symptoms with heat

Impaired sense of taste and smell

Epileptic seizures

Swallowing problems

Respiratory problems

Sleeping Disorders

Inappropriately cold body parts

No more Chemo for now....

2008-09-30T21:29:00.004-05:00

I was getting very sick and lets just say I have been on the slippery down hill slope emotionally and physically since the end of June. Finally two weeks ago I could not take it anymore and landed in the doctors sick as hell. Last Thursday they took six vials of blood and today I spent about three and a half hours at the hospital having tests done....oh, joy.
Maybe I will know something sometime next week?

Someone better be drinking Margaritas for me... I sure could use one!!

Life Goes On

2008-09-03T20:56:00.003-05:00

Life goes on.
It happens ev'ry day.
So appreciate what you got
Before it's taken away.
Life will hit you
When you're unprepared,
So be grateful and take all
That you can while you're there.
Get that frown off your head,
'Cause you're a long time dead.
Life goes on and on and on.
Life goes on and on and on.
No use runnin' 'round lookin' scared,
Life could get you when you're unaware.
One day it's gonna come, so you better accept it.
Life will hit you when you least expect it.
And one day when you are gone,
You know that life will still go on.
But no one'll care if you've been good, bad, right or wrong.
Life will still go on.
My bank went broke and my well ran dry.
It was almost enough to contemplate suicide.
I turned on the gas, but I soon realized
I hadn't settled my bill so they cut off my supply.
No matter how I try, it seems I'm too young to die.
Life goes on and on and on.
Life goes on and on and on.

After my come apart the other night where I stormed out of the house and didn't return 'till after 1 am I have been doing much thinking, and as much as I hate to say it...
Peter is partly right- I tend to make things blown out of proportion probably because of how guilty I feel about what my illness has done to my family. I will say that he is 1000% wrong when he said I just want to be the "poor sick women" and I was highly offended by that comment. I don't talk to anyone about how sick I am or try to even find sympathy- I have only ever mentioned having MS to two mom's on Matthew's baseball team (well 1 already knew) and that came up in conversation about how HER mother had MS!

Aside from my dad I don't even talk to anyone in my family about it and after Peter decided to keep a journal to log/count every time I complained about something- I don't even say anything to him about it. OK, he was my only outlet for trying to deal with how I was feeling or what I was trying to work out or just that I was flat out feeling horrible so he caught it all, but apparently it was far to much for him to have to deal with so he started a log- I assume in some attempt to show me how much leaning on him I actually did (again he WAS my only outlet!) then he said it just got to be to much to write down/keep up with so he stopped... I never did see this log, but rest assured I will not be complaining!

He also stated something else that hit me hard-
He said he is not a happy person. He has nothing to look forward to and every time he gets a bit ahead something (medical bills) puts him two steps back and no mater how much he works he is more and more in the hole. He also says that he has to get up each day knowing that today will be the best day I will have as it is a continuous progressive downhill ride I am on.... anyways that is hard for him to deal with. Gee just imagine how I feel....
Anyways my funk continues... I am in all honestly having a hard time trying to figure out how to get out of here, but hey.... LIFE GOES ON

Just the way it is

2008-08-19T19:47:00.005-05:00

Well it seems we have reached some sort of "agreement"

I don't mention the word "MS" or Multiple Sclerosis or anything to do with it and he will not get all huffy and pissed off that he has to work extra hard to pick up my slack.

So there you have it- I have never felt like more of a waste of oxygen then I have in the last few weeks. I have NO spousal support emotionally what so ever and VERY limited physical support...as in if I fall and can't get up then after being visibly aggravated I will get help, but other then that all bets are off as far as rubbing or stretching out a spasm, getting dressed, or any other general care for myself issues go. I am on my own and it is very lonely in here. Yes, I have friends- I just can't bring myself to call them up and "chat" about it. They have their own life and children and husbands to think about....they don't need all my drama added to it. Besides, that would require me getting out of bed/staying awake long enough to actually make a call.... but honestly even if I did I am sure all I would do is just cry. I would much rather sleep or eat something horribly bad for me then pass it on to someone else- Like I said they have their own problems- they don't need mine. Soooo BLAH... I am not even sure where to go from here...

Put on a happy face

2008-08-13T21:01:00.003-05:00

Put on a happy face....
The world doesn't need to know every single one of my mental neuroses. Many people who are depressed hide behind their very own painted on face. Nobody wants the world to know that deep inside they are secretly crazy.

We realize what we are doing to ourselves, but cannot control it. There are times when a depressed person will lash out or cry uncontrollably. We can hear ourselves in our very own mind saying, "Stop this. This is ridiculous." But we can't listen to that voice for some reason. So the rant continues.

Getting out of bed is a chore and can drain our energy for the rest of the day. We may not be tired as we lay in bed staring at the ceiling or willing ourselves to fall asleep once again. The bed is a comfort zone. The bed is protection from everything in the outside world. Simply prying our bodies from the bed can take all of our reserve energy and set us up for a day where all we can think about is going back to bed. The bed is like a pacifier for someone who is depressed.

There may be absolutely no reason for our depression on any given day. This is the hardest thing for other people to understand. They cannot fathom why...

Lonely & Mad

2008-08-03T23:37:00.003-05:00

I am so very lonely these last few weeks. I try to get Peter to talk to me or pay attention to me, but I get the very distinct feeling he is wanting me to go away and leave him alone. I have asked him a thousand times in the last few weeks if something was wrong or bothering him...I have asked him if there was anything he wanted to talk about and all he says is NO and goes back to watching TV or the computer. Not once since my last MRI has he asked me how I am feeling or if I am ok or if I need to talk. I actually called my dad crying because I needed someone...ANYONE to talk to about it. Not once has he attempted to comfort me or help me when I am in obvious pain or discomfort. Friday night he even went to the movies by himself knowing that I was feeling horrible and had been for several days...needing to get in bed at 7pm because I was just to tired and weak to stand any longer. I think I have become invisible. Perhaps he has invented some sorta coping skill by which he is able to look at me and see me as just being a normal lazy person and not at all someone who is sick and needs support....

I know, I know he works a zillion hours a week and has to "take care of everything around the house by himself" and I have piles of *stuff* all over the bedroom and office that I am trying to make sense of, but I honestly truly just got into a few projects which all got left in various stages of being finished and I have been to lazy *cough* tired or what ever to do anything with them. I know he hates it and I will get it cleaned up as soon as I am able to, but lets see....use that energy to clean up "piles" or save it for baseball and dance class and to help out with "other stuff" like dishes or laundry?
I am sorry, but I have been choosing to save it for the other activities....and let me tell you how simply HORRIBLE baseball has been- sitting there in near 100 degree heat with MS for an hour or two hours is one of the worse things ever, but I do it and while I am sure it is slowly killing me I have not complained once.
So yes, I know you "can't live like this anymore" but I choose baseball and dance over the piles...perhaps it would be a good idea if they became invisible? I just wonder how in the rolley round world I am going to be able to handle having a job. Yes I know it is expected now that both children are in school I find a job....the hard part is finding one that will just let me work Tu-Fr 9:30am-1:30pm- I have actually been looking for several weeks now; but I do wonder how cutting out all of my rest time is going to work?
I am horrified at the thought of getting a real job....I feel like I have one leg in the grave already. I know that it will be SO HARD because just on a normal day I can't be active to any extent for more then an hour or two with out literally becoming so tired I get dizzy and feel like I will black out... in fact I have actually had problems with this several times in the last few weeks finding myself waking up at the kitchen table or to sofa...hell even in the bathroom. I wonder how many Providgil I can take at a time?

Popcorn Anyone?

2008-07-14T22:28:00.000-05:00

Ok, so not really popcorn- just a lot a new brain lesions that make it look like popcorn popped inside my head.

Happy, Happy, Joy, Joy- Lotsa new lesions so maybe that explains why I am so tired and sore or who the hell knows...maybe it means nothing at all? We are going to give the medication 4 more months to work then we will take a look see again and decided the next step.
I am so freaking sick and tired of yes you got it right...being sick and tired!

Very much in need of some TLC

2008-06-11T12:01:00.000-05:00

My fatigue grows by leaps and bounds each day and my children grow more restless and bored by the second *sigh* I hate I have forever screwed up their childhood.....
At least we have baseball and dance to look forward to.... I will just suck it up and somehow manage it. They deserve this and they deserve for me not to screw it up by being to tired to take them or go watch them.

Right now I would really just kill for someone....ANYONE to hold me and tell me it's going to be ok. To tell me I know you are tired but you are doing a good job to say YOU CAN DO IT because most days I am about 99% sure I can't. Most days I want to pull the covers up over my head and sleep and never have to worry about getting up again, but honestly what kind of existence is that?
I DON"T WANT TO SLEEP MY LIFE AWAY
I don't want to feel so tired I fall asleep sitting at the table while the kids have lunch or on the floor watching them play. I don't want to hurt so bad I am afraid to take a deep breath because I know it will cause a surge of massive pain down my spine and around my rib cage.
I want to have someone rub my extremely sore muscles in an attempt to ease the pain. I want someone to ask how I am feeling and actually listen to what I am saying. I want to NOT feel guilty for feeling this way.

Happy Anniversary To US!

2008-05-20T23:56:00.001-05:00

Eight years ago today Peter and I got married....
Nothing very special went on- we didn't even exchange cards! Dinner and a movie when Beverly watches the kids will be nice...

So very tired......a rant

2008-05-03T11:37:00.000-05:00

That is all...the heat is taking a massive toll on me and I honestly would much rather sleep then do ANYTHING else in the entire world. I feel so bad for my poor children as I have been such a horrible mother this summer. They want me to get up and P L A Y and I can think about doing to going to sleep. I have been forcing myself to get up...to try and live...to help out around the house (but I am not even sure that has been noticed) to participate in family activities... Honestly each day it gets harder and I just want to sleep more, but I don't dare say a word about it. I do tell the children I am sorry, but mommy is so tired today...I dare not say it to Peter who has pointed out that thanks to me "I have to work 10 times harder to make sure the kids have a normal life and we have food on the table and roof over our head"
WOW, jut wow! I am so glad to be reminded that our life sucks because I had to go and get sick....yup- that is right...I went out and bought the first bottle of Multiple Sclerosis and Rheumatoid Arthritis I could find and downed every last bit just so I could make my life and never ending suffering hell make my children feel neglected and Peter work 'till he was falling over with exhaustion. I am such an evil little bitch- you better watch out.... I might just have to find some other horrible illness to up my suffering that much more....

Wired for Sound?

2008-04-15T10:23:00.000-05:00

......ok maybe not sound but brain waves!
This is a strange type of torture-
They make you stay awake for 24 HOURS straight then slather your head and face in a semi-sticky type of "glue" then stick TONS of little electrodes all over your head and face (as I am sure you have noticed by my above picture) turn out the lights and make you hyperventilate then place obscenely bright flashing strobe lights about an inch from your eyes!

Anyways the massive increase in my seizure activity is NOT from epilepsy onset but just another fabulious effect of the Multiple Sclerosis....Oh, JOY! Well, at least I get to stop taking the seizure medication as it is not helping and probably won't no matter how much we "tweak" my dose.

For those that are wondering what the heck the above torture is called you can read about it below- Enjoy!

Electroencephalogram (EEG)

An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity.

Why It Is Done

An electroencephalogram (EEG) may be done to:

Diagnose epilepsy and see what type of seizures are occurring. EEG is the most useful and important test in confirming a diagnosis of epilepsy.
Check for problems with loss of consciousness or dementia.
Help find out a person's chance of recovery after a change in consciousness.
Find out if a person who is in a coma is brain-dead.
Study sleep disorders, such as narcolepsy.
Watch brain activity while a person is receiving general anesthesia during brain surgery.
Help find out if a person has a physical problem (problem

To find certain types of abnormal electrical activity in the brain, you may have to be asleep during the recording. You may be asked not to sleep at all the night before the test. If you know that you are going to have a sleep-deprived EEG, plan to have someone drive you to and from the test.

How It Is Done

An electroencephalogram (EEG) may be done in a hospital or in a doctor's office by an EEG technologist. The EEG record is read by a doctor who is specially trained to diagnose and treat disorders affecting the nervous system (neurologist).

You will be asked to lie on your back on a bed or table or relax in a chair with your eyes closed. The EEG technologist will attach 16 to 25 flat metal discs (electrodes) to different places on your head, using a sticky paste to hold the electrodes in place. A cap with fixed electrodes may be placed on your head instead of individual electrodes. In rare cases, these electrodes may be attached to the scalp with tiny needles.

The electrodes are hooked by wires to a computer that records the electrical activity inside the brain. A machine can show the activity as a series of wavy lines drawn by a row of pens on a moving piece of paper or as an image on the computer screen.

Lie still with your eyes closed during the recording, and do not talk to the technologist unless you need to. The technologist will watch you directly or through a window during the test. The recording may be stopped from time to time to allow you to stretch and reposition yourself.

The technologist may ask you to do different things during the test to record what activity your brain does at that time.

You may be asked to breathe deeply and rapidly (hyperventilate). Usually you will take 20 breaths a minute for 3 minutes.
You may be asked to look at a bright, flashing light called a strobe. This is called photic or stroboscopic stimulation.
You may be asked to go to sleep. If you cannot fall asleep, you may be given a sedative to help you fall asleep. If an EEG is being done to check a sleep problem, an all-night recording of your brain's electrical activity may be done.

An EEG takes 1 to 2 hours. After the test, you may do your normal activities. However, if you were sleep-deprived or given a sleep medicine, have someone drive you home after the test.

How It Feels

There is no pain with an electroencephalogram (EEG).

If paste is used to hold the electrodes, some paste may stay in your hair after the test, so you will have to wash your hair to remove it. If needle electrodes are used (which is rare), you will feel a brief, sharp prick (about like having a hair pulled out) when each electrode is inserted. If electrodes are placed in your nose, they may cause a tickling feeling and, rarely, some soreness or a small amount of bleeding for 1 to 2 days after the test.

If you are asked to breathe rapidly, you may feel lightheaded or have some numbness in your fingers. This reaction is normal. It will go away a few minutes after you start breathing normally again.

Obituary/New York

2008-01-13T20:20:00.000-05:00

Obituary from Atlanta

News Obituary Listing

JOYCE E. DiSALVO, 74, of Marietta died Saturday. Funeral Mass, 9:45 a.m. Thursday, St. John the Evangelist Church, Mahopac, N.Y.; Joseph J. Smith Funeral Home, Mahopac.

Additional Comments

Joyce leaves behind ten great-grandchildren, five grandchildren, two sons and a daughter. Her youngest son preceded her in death and she is now at eternal rest next to him.

The Trip was very emotionally and physically demanding. My MS flared on the way up...which I figured it would do, but that made a hard trip that much harder.

It was so very hard to have to go right to Aunt Rose and Uncle Tony's to deal with the Jewelry right off...

It was super hard top see her in the casket. She looked perfect- just like herself, but felt and smelled really weird...creepy.

Seeing everyone was nice- I only wish it was not for such a horrible reason.

Grandpa was feeling very shaken so he asked me to plan the funeral mass. I gladly said yes as it gave me something to focus my energy on, but then I started to worry if I was picking to wrong things to do or say. I wanted to be respectful of everyone but at the same time I didn't have very long to get it done.

I had a minor melt down when they put the casket into the hurs, but as soon as we got to the church and the casket was incensed it was total and complete relief. I can't really explain it, but the mass was a huge help.

Again it was super hard at the cemetery especially seeing Uncle George's headstone removed so they could make her plot next to his. I sat down on the ground and just kept running my fingers over the words on the headstone over and over again. I didn't think I would ever be able to make myself leave. I ended up staying 'till they were lowering the casket into the ground...then I couldn't stand being there and HAD to go.....

Heaven has a new Angel

2008-01-05T08:02:00.000-05:00

I got the call early this morning that grandma passed. That is about all I can type right now...
I need to pack- I have to leave for New York for her funeral soon.

On the Edge of Death

2008-01-04T23:59:00.000-05:00

I rushed back to the hospice as soon as I could tonight. This time Peter just dropped me off so I could stay as long as I wanted. I was armed with a bag of goodies. I took notes that the kids wrote for her and a map Manda drew so Nannie could come and visit her from heaven. I had a picture of the kids, a book to read to her, and Elly my little Grey elephant.

I knew she was much closer to passing on then she was last night. Her breathing was much less forced and at times she just was taking teeny breaths with her mouth closed. Again I held her hands which had lost their warmth (another sign she was close) and stroked her face- I read her the notes amazingly enough with out crying and I read her the book from the kids. I talked to her nurse who was wonderful and let me just cry for a few. She assured me it was ok to push her morphine button as much as I wanted showed me how her feet were very cold and had actually turned black either from the infection or from lack of blood flow, but probably both. I know that might seem like a cruel thing to show a person, but I needed to see it, because every ounce of my being was screaming please help her- she can get better if you would just help her. Give her a breathing treatment and some oxygen for god's sake! She showed me how her urine output was basically nothing because her kidneys had failed pointed out a few other details that all said it was her time....and honestly I knew it was but I simply was being selfish. I wanted to keep her longer. My children wanted their Nannie- they were not going to understand! This was all not fair, but when it came down to it what was not fair was the fact that she was suffering so horribly.
I fought my tears and stroked her face and told her over and over again that it was ok. That she didn't have to fight anymore- that it was time for her to go home with Uncle George and her parents...they were all waiting for her. I told her she had nothing to worry about here because I was going to take care of everyone and be strong for them... that she didn't have to stay for us because we were all going to be ok.
I stayed with her for a very long time and finally the nurse wanted to talk to me out in the hall. She said her limbs were getting colder and her pulse was barely noticeable and she thought that maybe she was hanging on simply for not wanting to go with me there. She said some people prefer to pass in private. So I went in one last time and told how very much I loved her and how it was ok to go because we were all going to be ok here and Uncle George and her mommy and daddy were waiting on her. I left the notes/map from the kids and I placed Elly on her pillow and told her Elly would watch over her while I was gone... kisses her forehead one last time and walked sobbing out of the building.

My heart is heavy

2008-01-03T23:52:00.003-05:00

It has become painfully clear that grandma will not recover. Her body simply is out of fight. I spoke the the emergency priest on call on Transfiguration when we decided to remove her from support and he rushed right over to the hospital. It was very comforting to know but at the same time so scary as it suddenly came crashing down on me how painfully final all of this is.
This afternoon grandma was transfered from Kennestone Hospital to Tranquility Hospice and was made has comfortable as possible. I managed to rush down to the hospice as fast as I could to be with her. They would not let me sit with her since just before Christmas at the hospital for fear my weakened immune system would catch something horrible and it would put me in danger. It was horrible knowing she was there and I was not able to be with her, so when they moved her today all I could think of was getting there to see her.
Everyone warned me that she was in bad shape and not responsive, but NOTHING could have prepared me for what I saw when I walked into her room.
She was laying there eyes closed mouth wide open gasping very shallow and fast. I could not put a word to it but Peter nailed it when he said she was like a fish out of water.
I just kinda of stood by the end of the bed starring- waiting to get the courage to walk over to her.
Once I finally was able to go to her I just wanted to touch her and hold her. They were saying she was in no pain, but I KNOW she was suffering- I could feel her pain deep in my soul. I sat and stoked her face and held her hand and just talked to her...I have no idea how long I was there or what I said- I just wanted her to know I was there and I wanted her to not be afraid. I could tell at times when I was talking that she was trying to cry and show that she was sad or afraid....I just kept telling her it was ok.
I wish I could have been there longer but I had to get home to the children and Peter had work in the morning.

The MS monster and Christmas...

2007-12-27T12:03:00.000-05:00

Well This Christmas got off to a fantastic start with the blah's in full force and only went down hill from there. No, I am not saying I had a bad Christmas...in fact it was just the opposite! It was truly a fantastic Christmas-more then I would have ever hoped for!

Anyway... Like I said the blah's were full force going into Christmas and a downward spiral of events continued to strengthen it.

My grandma is still in the hospital- going on three MONTHS now, Matthew had to spend the 20th in the hospital because he was sick, my father had to have surgery on the 21st, and the Tarpley family Christmas fell on the (23rd) day I had to do my injection and because of the rest of our Christmas plans I simply could not figure a way to rearrange my shot day so we would be able to attend-I missed my second Christmas with that side of the family in a row.
An old friend from High School committed suicide...honestly I had not been in contact with him in years, but he and one of my oldest and best friends who lives out in California found each other and love again a few months ago after all these years of being apart, and she is simply devastated...actually so beyond devastated I have no words that could even begin to describe her pain. It simply broke my heart listening to her cry so very desperately and deeply -
all I wanted to do was hold her and tell her some how it would be ok, but she is on the other side of the country and I felt so helpless.

Christmas Eve I was still feeling kinda icky from my shot (or so I figured that was what it was from) and by the time "Santa" came and got everything ready it was 3am- then Manda woke up like 3 times between 3 and 6 for what ever reason and finally at 6:30 Matthew came running in that Santa came and that was that- off to start the day on like 2 hours of sleep! I continued to feel horrible...very tired and "heavy" most of the morning then around 10 I started to feel sick to my stomach and dizzy so I went to go take a nap. Around 12:30 family started to arrive and I managed to pull myself together enough to visit for a about 2 hours, but I ended up having to go back to bed (talk about embarrassing). Then all day yesterday my stomach was absolutely a mess and I had chills and basically had to spend the entire day either in the bathroom or sleeping. My husbands last day off and I could not even pull myself together to spend anytime with him or the kids...I felt so guilty about being in bed, but honestly I just was feeling so bad I had to. As I write this I am STILL feeling sick...I have been sick to my stomach with severe fatigue and weakness for going on 5 days now---I HAVE HAD ENOUGH!
Ok, Ok, Ok....I know stop complaining and get on with life already....

Fight of the blah....

2007-12-15T19:03:00.000-05:00

I have simply become a "blah"
Normally I am so excited about this time of year...LOVE Christmas and WINTER, but I just can't get into it this year. It is still in the upper 60's and even into the 70's out and just that alone is enough to depress me...It certainly does not feel like Christmas! More then that the year is almost GONE....an entire year and what did I get done? NOTHING! My children are growing so fast and Manda will be starting school so very soon...then what will become of me?

I have had a staph infection in my foot for about 3 weeks now (maybe longer) and it used it as an excuse to not exercise...freaking great, now I have gained nearly 20lbs! For 3 weeks I have sat around and done nothing but pick on food do crafts and play games. No form of physical activity what so ever and I have blown up....talk about adding to the blah's.
Christmas is so very soon and I have gotten NOTHING DONE! I have not even mailed my cards!
Someone motivate me to get off my ass please!

A miracle

2007-12-10T21:27:00.000-05:00

I just want to point out for those of you who don't believe they do exist! The most amazing, incredible miraculous thing happen over the last few weeks...are you ready for this?

WE GOT OUT OF MEDICAL BILL HELL!

We have been blessed with some very truly wonderful people in our life who went well beyond what anyone could ever expect or even hope for and on 12-9-07 @ 10:24pm Peter made the last of the electronic payments on the HUGE medical bills! I can't wait 'till the papal check comes to pay off the rest of the smaller ones.....What a truly special Christmas gift this is to our family. I am bursting at the seams with excitement and hope for the new year!

For the love of friends

2007-12-07T19:42:00.000-05:00

OMG!!!!!!

The worlds biggest care package was left at the house today by some of the best friends anyone could ever hope to have! If you ladies from AWM see this know that we are extremely grateful for your loving hearts and generosity....I am simply speechless!

Small bites of good fortune

2007-11-29T00:02:00.000-05:00

Well sometimes the sun peeks out from the clouds even if just for a brief second.

Our mechanic was able to give us a break on getting Peter's truck fixed, but it still ended up being nearly same amount of $$ as they found MORE problems as they were getting things taken apart. We had to use what was left of the savings account, but at least I don't have to worry about him driving it anymore.

State Farm who we have out home owners insurance with was able to cut our car insurance nearly in half when we switched it over to them and that will be enough to cover the $800 dollar a year more our insurance company wants to increase our premium (oh, yes that is right...health insurance is now going to be $800 more a year to keep our coverage)

I have come into a knowing that I truly do have some of the best friends in the world, and their emotional support has been truly amazing these last few weeks. I am blessed

I am blessed a billion and one times over to have the best husband anyone could ever hope for and two of the most perfect creatures the Lord ever created...Matthew and Manda. Sometimes I let myself get all tangled up in what is wrong in life and I forget to see the overwhelming love and joy right in front of me.

And it looks GOOD!

2007-11-09T19:06:00.000-05:00

My liver that is!! The scans came back nomal!! So while my blood work looks like there is a major problem the scan says other wise!

Dude wanna see my drugs?

2007-10-01T23:49:00.000-05:00

Ok...it was time to update my medication list so TA-DA! Here it is.... *barf*

AVONEX (given as a once-a-week intramuscular (IM) injection, usually in the large muscles of the thigh or upper arm)

Description

•	Interferon beta-1a is a protein. Interferons are released in the body in response to viral infections. Interferons are important for fighting viruses in the body, regulating reproduction of cells, and regulating the immune system.

•

Interferon beta-1a is a specific interferon used in the treatment of relapsing multiple sclerosis to slow the development of physical disability and to decrease the frequency of exacerbations.

Possible Side Effects

•

Your doctor may want you to have regularly scheduled blood tests during treatment with Avonex to determine whether the medication is affecting your liver and to monitor for other side effects.

		•	Flulike symptoms (fever, chills, sweating, muscle aches, tiredness) are likely to occur. They are most common at the start of therapy and may decrease with continued use. Over-the-counter medications for pain and fever may help to alleviate these symptoms. Discuss with your doctor the use of medication to reduce these side effects.
•	Other less serious side effects may be more likely to occur. Continue to use Avonex and notify your doctor if you experience

headache;

nausea, vomiting, or loss of appetite;

weakness;

dizziness or drowsiness; or

redness, pain, bruising, or swelling at the injection site.

Avonex Serious Side Effects

Anaphylaxis

Elevation of liver enzymes

Shortage of red or white blood cells

Elevated number of platelets

Psychiatric disorders

Seizure

Symptomatic liver dysfunction

Plaquenil tablets 200 MG (1 twice a day)

(hydroxychloroquine sulfate)

Why is Plaquenil prescribed? Immunosuppresive drugs are used in organ transplantation and autoimmune disorders. By suppressing lymphocytic immune responses, many disease states can be arrested.

Plaquenil is prescribed for the prevention and treatment of certain forms of malaria.

**Plaquenil is also used to treat the symptoms of rheumatoid arthritis such as swelling, inflammation, stiffness, and joint pain. It is also prescribed for lupus erythematosus, a chronic inflammation of the connective tissue.

What side effects may occur?

Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking Plaquenil.

Side effects of treatment for an acute malarial attack may include:
Abdominal cramps, diarrhea, dizziness, heart problems, lack or loss of appetite, mild headache, nausea, vomiting

Side effects of treatment for lupus erythematosus and rheumatoid arthritis may include:
Abdominal cramps, abnormal eye pigmentation, acne, anemia, bleaching of hair, blind spots, blisters in mouth and eyes, blood disorders, blurred vision, convulsions, decreased vision, diarrhea, difficulty focusing the eyes, diminished reflexes, dizziness, emotional changes, excessive coloring of the skin, eye muscle paralysis, "foggy vision," halos around lights, headache, hearing loss, heart problems, hives, involuntary eyeball movement, irritability, itching, light flashes and streaks, light intolerance, liver problems or failure, loss of hair, loss or lack of appetite, muscle paralysis, muscle weakness and wasting, nausea, nervousness, nightmares, psoriasis (dry, scaly, red skin patches), reading difficulties, ringing in the ears, skin eruptions, skin inflammation and scaling, skin rash, vertigo, vomiting, weariness, weight loss

Prednisone (PRN for flair ups)

(PRED ni sone)

Prednisone is particularly effective as an immunosuppressant and affects virtually all of the immune system. It can therefore be used in autoimmune diseases, inflammatory diseases (such as severe asthma, severe poison ivy, and Crohn's disease), various kidney diseases including nephrotic syndrome, and to prevent and treat rejection in organ transplantation.

Side Effects

Major

depression, mania, or other psychiatric symptoms
unusual fatigue or weakness
blurred vision
abdominal pain
peptic ulcer
infections
painful hips or shoulders
osteoporosis
acne breakouts

Minor

Baclofen (20 MG 1 four times a day)

(BAK loe fen)
Lioresal, Kemstro

DRUG CLASS AND MECHANISM: Baclofen is an oral medication that relaxes skeletal muscles, the muscles that move the skeleton (also called striated muscle). Chemically, baclofen is related to gamma-aminobutyric acid (GABA), a naturally-occurring neurotransmitter in the brain. Neurotransmitters are chemicals that nerves use to communicate with one another. GABA released by some nerves causes the activity of other nerves to decrease. It is believed that baclofen, acting like GABA, blocks the activity of nerves within the part of the brain that controls the contraction and relaxation of skeletal muscle.

PRESCRIBED FOR: Baclofen is used for treating spasm of skeletal muscles that cause muscle clonus, rigidity, and pain due to multiple sclerosis.

SIDE EFFECTS: Baclofen may cause drowsiness, weakness, dizziness, headache, seizures, nausea, vomiting, low blood pressure, constipation, confusion, respiratory depression, inability to sleep, and increased urinary frequency or urinary retention.

Abrupt discontinuation of oral baclofen may cause seizures and hallucinations. Abrupt discontinuation of intrathecal baclofen may result in high fever, rebound spasticity, muscle rigidity, and rhabdomyolysis (muscle breakdown) that can progress to failure of several organs, including the kidney, and even death.

CLINORIL 200 MG (1 twice a day)
(sulindac) Tablets

PRESCRIBED FOR: CLINORIL is indicated for acute or long-term use in the relief of signs and symptoms of the following:

Osteoarthritis
Rheumatoid arthritis**
Ankylosing spondylitis
Acute painful shoulder (Acute subacromial bursitis/supraspinatus tendinitis)
Acute gouty arthritis

CLINORIL should be administered orally twice a day with food. The maximum dosage is 400 mg per day. Dosages above 400 mg per day are not recommended.

In osteoarthritis, rheumatoid arthritis, and ankylosing spondylitis, the recommended starting dosage is 150 mg twice a day. The dosage may be lowered or raised depending on the response.

A prompt response (within one week) can be expected in about one-half of patients with osteoarthritis, ankylosing spondylitis, and rheumatoid arthritis. Others may require longer to respond

SIDE EFFECTS:

Gastrointestinal: The most frequent types of adverse reactions occurring with CLINORIL are gastrointestinal; these include gastrointestinal pain (10%), dyspepsia***, nausea*** with or without vomiting, diarrhea***, constipation***, flatulence, anorexia and gastrointestinal cramps.

Dermatologic: Rash***, pruritus.

Central Nervous System: Dizziness***, headache***, nervousness.

Special Senses: Tinnitus.

Miscellaneous Edema (see WARNINGS).

Incidence Less Than 1 in 100

Gastrointestinal: Gastritis, gastroenteritis or colitis. Peptic ulcer and gastrointestinal bleeding have been reported. GI perforation and intestinal strictures (diaphragms) have been reported rarely. Liver function abnormalities; jaundice, sometimes with fever; cholestasis; hepatitis; hepatic failure. There have been rare reports of sulindac metabolites in common bile duct biliary calculi in patients with symptoms of cholecystitis who underwent a cholecystectomy. Pancreatitis (see PRECAUTIONS). Ageusia; glossitis. "sludge" and in

Dermatologic: Stomatitis, sore or dry mucous membranes, alopecia, photosensitivity. Erythema multiforme, toxic epidermal necrolysis, Stevens-Johnson syndrome, and exfoliative dermatitis have been reported.

Cardiovascular: Congestive heart failure, especially in patients with marginal cardiac function; palpitation; hypertension.

Hematologic: Thrombocytopenia; ecchymosis; purpura; leukopenia; agranulocytosis; neutropenia; bone marrow depression, including aplastic anemia; hemolytic anemia; increased prothrombin time in patients on oral anticoagulants (see PRECAUTIONS).

Genitourinary: Urine discoloration; dysuria; vaginal bleeding; hematuria; proteinuria; crystalluria; renal impairment, including renal failure; interstitial nephritis; nephrotic syndrome. Renal calculi containing sulindac metabolites have been observed rarely.

Metabolic: Hyperkalemia.

Musculoskeletal: Muscle weakness.

Psychiatric: Depression; psychic disturbances including acute psychosis.

Nervous System: Vertigo; insomnia; somnolence; paresthesia; convulsions; syncope; aseptic meningitis (especially in patients with systemic lupus erythematosus (SLE) and mixed connective tissue disease, see PRECAUTIONS).

Special Senses: Blurred vision; visual disturbances; decreased hearing; metallic or bitter taste.

Respiratory: Epistaxis.

Hypersensitivity Reactions: Anaphylaxis; angioneurotic edema; bronchial spasm; dyspnea. Hypersensitivity vasculitis. A potentially fatal apparent hypersensitivity syndrome has been reported. This syndrome may include constitutional symptoms (fever, chills, diaphoresis, flushing), cutaneous findings (rash or other dermatologic reactions —; see above), conjunctivitis, involvement of major organs (changes in liver function including hepatic failure, jaundice, pancreatitis, pneumonitis with or without pleural effusion, leukopenia, leukocytosis, eosinophilia, disseminated intravascular coagulation, anemia, renal impairment, including renal failure), and other less specific findings (adenitis, arthralgia, arthritis, myalgia, fatigue, malaise, hypotension, chest pain, tachycardia).

Causal Relationship Unknown: A rare occurrence of fulminant necrotizing fasciitis, particularly in association with Group A β-hemolytic streptococcus, has been described in persons treated with non-steroidal anti-inflammatory agents, sometimes with fatal outcome (see also PRECAUTIONS, General).

Other reactions have been reported in clinical trials or since the drug was marketed, but occurred under circumstances where a causal relationship could not be established. However, in these rarely reported events, that possibility cannot be excluded. Therefore, these observations are listed to serve as alerting information to physicians.

Cardiovascular: Arrhythmia.

Metabolic: Hyperglycemia.

Nervous System: Neuritis.

Special Senses: Disturbances of the retina and its vasculature.

Miscellaneous: Gynecomastia.

Endocet / Percocet 7.5 (PRN)

Acetaminophen and Oxycodone

Why is this medication prescribed?

This combination of drugs is used to relieve moderate to moderately severe pain.

SIDE EFFECTS

The most frequently observed adverse reactions include lightheadedness, dizziness, sedation, nausea, and vomiting. These effects seem to be more prominent in ambulatory than in nonambulatory patients, and some of these adverse reactions may be alleviated if the patient lies down.

Other adverse reactions include euphoria, dysphoria, constipation, skin rash, and pruritus. At higher doses, oxycodone has most of the disadvantages of morphine including respiratory depression.

DRUG ABUSE AND DEPENDENCE

Acetaminophen; oxycodone HCl is a Schedule II controlled substance.

Oxycodone can produce drug dependence and has the potential for being abused

Phenergan 25 MG (PRN)

promethazine (oral) (pro METH a zeen)

What is Phenergan?

•

Phenergan is an antihistamine. It blocks the effects of the naturally occurring chemical histamine in your body.

•

Phenergan is used to treat allergy symptoms such as itching, runny nose, sneezing, itchy or watery eyes, hives, and itchy skin rashes.

•

Phenergan also prevents motion sickness, and treats nausea and vomiting or pain after surgery. It is also used as a sedative or sleep aid.

What are the possible side effects of Phenergan?

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

•

Stop using Phenergan and call your doctor at once if you have any of these serious side effects:

uncontrollable movements of your eyes, lips, tongue, face, arms, or legs;

shallow breathing, weak pulse;

hallucinations (seeing or hearing things);

nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); or

fever, muscle stiffness, confusion, fast or uneven heartbeat, sweating, fainting; or

tremors, twitching, or uncontrolled muscle movements in your face, arms, or legs.

•

Continue using Phenergan and talk with your doctor if you have any of these less serious side effects:

dizziness, drowsiness, sleepiness, or confusion;

blurred vision, dry mouth;

ringing in your ears;

nausea or vomiting; or

	·	increased sensitivity to sunlight.

Calan SR 240 MG (1 every day)

Flunarizine; Verapamil

Vascular headache prophylactic-

Description

Amlodipine, bepridil, diltiazem, felodipine, flunarizine, isradipine, nicardipine, nifedipine, nimodipine, and verapamil belong to the group of medicines called calcium channel blocking agents.

Calcium channel blocking agents affect the movement of calcium into the cells of the heart and blood vessels. As a result, they relax blood vessels and increase the supply of blood and oxygen to the heart while reducing its workload.

Some of the calcium channel blocking agents are used to relieve and control angina pectoris (chest pain).

Some are also used to treat high blood pressure (hypertension). High blood pressure adds to the workload of the heart and arteries. If it continues for a long time, the heart and arteries may not function properly. This can damage the blood vessels of the brain, heart, and kidneys, resulting in a stroke, heart failure, or kidney failure. High blood pressure may also increase the risk of heart attacks. These problems may be less likely to occur if blood pressure is controlled.

Flunarizine is used to prevent migraine headaches.

Nimodipine is used to prevent and treat problems caused by a burst blood vessel around the brain (also known as a ruptured aneurysm or subarachnoid hemorrhage).

Other calcium channel blocking agents may also be used for these and other conditions as determined by your doctor

Ask your doctor how to count your pulse rate. Then, while you are taking this medicine, check your pulse regularly . If it is much slower than your usual rate, or less than 50 beats per minute, check with your doctor. A pulse rate that is too slow may cause circulation problems.

In some patients, tenderness, swelling, or bleeding of the gums may appear soon after treatment with this medicine is started. Brushing and flossing your teeth carefully and regularly and massaging your gums may help prevent this. See your dentist regularly to have your teeth cleaned. Check with your medical doctor or dentist if you have any questions about how to take care of your teeth and gums, or if you notice any tenderness, swelling, or bleeding of your gums.

Amitiza (1 twice a day)

lubiprostone (loo bee PROS tone)

What is Amitiza?

•

Amitiza increases the secretion of fluid in your intestines

• Amitiza may also be used for purposes other than those listed here.

What is the most important information I should know about Amitiza?

•

Use this medication exactly as it was prescribed for you. Do not use it in larger doses or for longer than recommended by your doctor.

•

Do not take Amitiza if you have severe diarrhea. Call your doctor for instructions.

•

If you miss a dose, use the medication as soon as you remember. If it is almost time for the next dose, skip the missed dose and wait until your next regularly scheduled dose. Do notmedicine to make up the missed dose. use extra

•

There may be other drugs that can affect Amitiza. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor.

•

Stop using this medication and get emergency medical help if you think you have used too much medicine, or if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

What are the possible side effects of Amitiza?

•

Stop using Amitiza and get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

•

Call your doctor at once if you have severe vomiting or diarrhea .

•

Less serious side effects are more likely to occur. Continue using Amitiza and talk with your doctor if you have any of these less serious side effects:

nausea, vomiting, mild diarrhea, stomach pain or bloating;

runny or stuffy nose, sneezing, cough;

headache, dizziness;

swelling in your hands, ankles, or feet;

back pain; or

sore throat.

Singulair 10 MG (1 at bedtime)

Generic name: Montelukast sodium
Brand names: Singulair

Why is Singulair prescribed?

Singulair is used for long-term prevention of asthma. It reduces the swelling and inflammation that tend to close up the airways, and relaxes the walls of the bronchial tubes, expanding the airways and permitting more air to pass through.

Singulair is also used to relieve the stuffy, runny nose and sneezing caused by seasonal allergies.

Most important fact about Singulair

Singulair alleviates the on-going symptoms of asthma, but it won't stop an acute asthma attack. For that you need a fast-acting, orally inhaled airway opener such as Alupent or Proventil.

How should you take Singulair?

Take a Singulair tablet once daily, whether or not you have any symptoms. The tablet can be taken with or without food.

If you have asthma, or asthma plus allergies, take Singulair in the evening. If you have only allergies, you can take Singulair at any time.

What side effects may occur?

Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking Singulair.

More common side effects may include:
Abdominal pain, abnormal dreams, allergic reaction, bronchitis, bruising, cough, dental pain, diarrhea, difficulty breathing or swallowing, dizziness, drowsiness, ear infection, ear pain, eczema, eye inflammation, fatigue, fever, flu, hallucinations, headache, hives, indigestion and other digestive problems, infection, insomnia, irritability, itching, laryngitis, leg pain, muscle aches and cramps, nasal congestion, nausea, pancreatitis, pneumonia, rash, restlessness, runny nose, seizures, sinus pain, skin inflammation, sneezing, sore throat, swelling due to fluid retention, swelling of the mouth or throat, upper respiratory infection, tendency to bleed easily, thirst, viral infection, vomiting

Venlafaxine/ Effexor XR 150 MG (1 every day)

Venlafaxine is used primarily for the treatment of depression, generalized anxiety disorder, obsessive compulsive disorder, social anxiety disorder, and panic disorder in adults only. It is also used for other general depressive disorders

Effectiveness

Venlafaxine is an effective anti-depressant for many persons; however, it seems to be especially effective for those with treatment-resistant depression. Some of these persons have taken two or more antidepressants prior to venlafaxine with no relief. Patients suffering with severe long-term depression typically respond better to venlafaxine than other drugs. However, venlafaxine has been reported to be more difficult to discontinue than other anti-depressants.

Common side effects

Nausea
Ongoing Irritable Bowel Syndrome
Dizziness
Fatigue
Insomnia
Vertigo
Dry mouth
Sexual dysfunction
Sweating
Vivid dreams
Increased blood pressure
Electric shock-like sensations
Increased anxiety at the start of treatment
Akathisia (Agitation)

Less common to rare side-effects

Cardiac arrhythmia
Increased serum cholesterol
Gas or stomach pain
Abnormal vision
Nervousness, agitation or increased anxiety akathisia
Panic Attacks
Depressed feelings
Suicidal thoughts suicidal ideation
Confusion
Neuroleptic malignant syndrome
Loss of appetite
Constipation
Tremor
Drowsiness
Allergic skin reactions
External bleeding
Serious bone marrow damage (thrombocytopenia, agranulocytosis)
Hepatitis
Pancreatitis
Seizure
Tardive dyskinesia
Difficulty swallowing
Psychosis
Hostility
Weight gain (effect not clear, but of concern when treating young women who may have Body Dysmorphic Disorder).
Homicidal Thoughts Homicidal Ideations

Severe discontinuation (withdrawal) syndrome

Sudden discontinuation of venlafaxine has a high risk of causing potentially severe withdrawal symptoms. The high risk of withdrawal symptoms may reflect venlafaxines short half-life. Missing even a single dose can induce discontinuation effects in some patients.

Lunesta 3 MG (PRN)

INDICATIONS AND USAGE

LUNESTA is indicated for the treatment of insomnia. In controlled outpatient and sleep laboratory studies, LUNESTA administered at bedtime decreased sleep latency and improved sleep maintenance.

DRUG ABUSE AND DEPENDENCE

Controlled Substance Class

LUNESTA is a Schedule IV controlled substance under the Controlled Substances Act. Other substances under the same classification are benzodiazepines and the nonbenzodiazepine hypnotics zaleplon and zolpidem. While eszopiclone is a hypnotic agent with a chemical structure unrelated to benzodiazepines, it shares some of the pharmacologic properties of the benzodiazepines.

Most Common Side Effects:

All medicines have side effects. The most common side effects of sleep medicines are:

· Drowsiness

· Dizziness

· Lightheadedness

· Difficulty with coordination

Rozerem (bedtime PRN)

Generic Name: Ramelteon (ram-EL-tee-on)
Brand Name: Rozerem

Rozerem is used for:

Treating insomnia. It may also be used for other conditions as determined by your doctor.

Rozerem in a melatonin agonist. It works by acting on the melatonin receptors in the brain, which helps cause sleep.

How to use Rozerem :

Use Rozerem as directed by your doctor. Check the label on the medicine for exact dosing instructions.

Rozerem may be taken with or without food. If stomach upset occurs, take with food to reduce stomach irritation.
Do not take Rozerem with or immediately after a high-fat meal.
Take Rozerem within 30 minutes prior to going to bed.
If you miss a dose of Rozerem and you are taking 1 dose daily at bedtime, skip the missed dose. Do not take the dose in the morning or take 2 doses at once.

Important safety information:

Do not drive, operate machinery, or do anything else that could be dangerous until you know how you react to Rozerem . Using Rozerem alone, with certain other medicines, or with alcohol may lessen your ability to drive or perform other potentially dangerous tasks.
Avoid drinking alcohol or taking other medications that cause drowsiness (eg, sedatives, tranquilizers) while taking Rozerem . Rozerem will add to the effects of alcohol and other depressants. Ask your pharmacist if you have questions about which medicines are depressants.
Rozerem is not recommended for use in CHILDREN. Safety and effectiveness have not been confirmed.
PREGNANCY and BREAST-FEEDING: If you become pregnant while taking Rozerem , discuss with your doctor the benefits and risks of using Rozerem during pregnancy. It is unknown if Rozerem is excreted in breast milk. Do not breast-feed while taking Rozerem .

When sleep medicines are used every night for more than a few weeks, they may lose their effectiveness to help you sleep. This is known as TOLERANCE. Sleep medicines should usually be used only for short periods of time, such as a few days and generally no longer than 1 or 2 weeks. If your sleep problems continue, contact your doctor.

Possible side effects of Rozerem :

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:

Diarrhea; dizziness; drowsiness; fatigue; nausea: tiredness.

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); absence of a menstrual cycle; decreased sex drive; fever; hallucinations; headache; irregular heartbeat; mental or mood changes; muscle aches; muscle or joint pain; pounding in the chest; problems with fertility; suicidal thoughts or behaviors; unexplained breast milk production; vision changes; worsening of depression; worsening of sleeplessness.

Valium 5 MG (1 at bedtime every night)
Generic Name: diazepam

INDICATIONS:

Valium is indicated for the management of anxiety disorders or for the short-term relief of the symptoms of anxiety. Anxiety or tension associated with the stress of everyday life usually does not require treatment with an anxiolytic.

In acute alcohol withdrawal, Valium may be useful in the symptomatic relief of acute agitation, tremor, impending or acute delirium tremens and hallucinosis.

Valium is a useful adjunct for the relief of skeletal muscle spasm due to reflex spasm to local pathology (such as inflammation of the muscles or joints, or secondary to trauma); spasticity caused by upper motor neuron disorders (such as cerebral palsy and paraplegia); athetosis; and stiff-man syndrome.

Oral Valium may be used adjunctively in convulsive disorders, although it has not proved useful as the sole therapy.

The effectiveness of Valium in long-term use, that is, more than 4 months, has not been assessed by systematic clinical studies. The physician should periodically reassess the usefulness of the drug for the individual patient.

PRECAUTIONS:

If Valium is to be combined with other psychotropic agents or anticonvulsant drugs, careful consideration should be given to the pharmacology of the agents to be employed—particularly with known compounds which may potentiate the action of Valium, such as phenothiazines, narcotics, barbiturates, MAO inhibitors and other antidepressants. The usual precautions are indicated for severely depressed patients or those in whom there is any evidence of latent depression; particularly the recognition that suicidal tendencies may be present and protective measures may be necessary. The usual precautions in treating patients with impaired renal or hepatic function should be observed.

In elderly and debilitated patients, it is recommended that the dosage be limited to the smallest effective amount to preclude the development of ataxia or oversedation (2 mg to 2½ mg once or twice daily, initially, to be increased gradually as needed and tolerated).

The clearance of Valium and certain other benzodiazepines can be delayed in association with Tagamet (cimetidine) administration. The clinical significance of this is unclear.

DVERSE REACTIONS:

Side effects most commonly reported were drowsiness, fatigue and ataxia. Infrequently encountered were confusion, constipation, depression, diplopia, dysarthria, headache, hypotension, incontinence, jaundice, changes in libido, nausea, changes in salivation, skin rash, slurred speech, tremor, urinary retention, vertigo and blurred vision. Paradoxical reactions such as acute hyperexcited states, anxiety, hallucinations, increased muscle spasticity, insomnia, rage, sleep disturbances and stimulation have been reported; should these occur, use of the drug should be discontinued.

Because of isolated reports of neutropenia and jaundice, periodic blood counts and liver function tests are advisable during long-term therapy. Minor changes in EEG patterns, usually low-voltage fast activity, have been observed in patients during and after Valium therapy and are of no known significance.

DRUG ABUSE AND DEPENDENCE:

Withdrawal symptoms, similar in character to those noted with barbiturates and alcohol (convulsions, tremor, abdominal and muscle cramps, vomiting and sweating), have occurred following abrupt discontinuance of diazepam. The more severe withdrawal symptoms have usually been limited to those patients who had received excessive doses over an extended period of time. Generally milder withdrawal symptoms (eg, dysphoria and insomnia) have been reported following abrupt discontinuance of benzodiazepines taken continuously at therapeutic levels for several months. Consequently, after extended therapy, abrupt discontinuation should generally be avoided and a gradual dosage tapering schedule followed. Addiction-prone individuals (such as drug addicts or alcoholics) should be under careful surveillance when receiving diazepam or other psychotropic agents because of the predisposition of such patients to habituation and dependence.

On a Sinking Ship

2007-09-26T20:01:00.000-05:00

I will just make this fast....

Liver test keep being abnormal so I will check into Douglas Hospital Monday 10-8 for some tests (this is in addition to the NINE viles of blood they took at my appt!)

I feel like ass...wish me luck

I'm invisible

2007-09-08T09:34:00.000-05:00

Nic..you are simply the best! Thanks again! <3

I'm invisible.

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, "Can't you see I'm on the phone?" Obviously not. No one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.

I'm invisible.

Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, "What time is it?" I'm a satellite guide to answer, "What number is the Disney Channel?" I'm a car to order, "Right around 5:30, please."

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again.

She's going ... she's going ... she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself as I looked down at my out-of-style dress; it was the only thing I could find that was clean. My unwashed hair was pulled up in a banana clip and I was afraid I could actually smell peanut butter in it. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, "I brought you this."
It was a book on the great cathedrals of Europe. I wasn't exactly sure why she'd given it to me until I read her inscription: "To Charlotte, with admiration for the greatness of what you are building when no one sees."

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: * No one can say who built the great cathedrals - we have no record of their names. * These builders gave their whole lives for a work they would never see
finished. * They made great sacrifices and expected no credit. * The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, "Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it."

And the workman replied, "Because God sees."

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, "I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act
of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become."

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my stro ng, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on . The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, "My mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table." That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, "You're gonna love it there."

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Multiple Sclerosis and Sexuality

2007-09-05T20:08:00.000-05:00

Multiple Sclerosis and Sexuality

The following information is abbreviated and referenced from MSIF - Sexual Changes in MS and from the National MS Society - MS and Intimacy.

Sexuality as it relates to multiple sclerosis tends to be one of those things that gets left unspoken - everyone affected by MS experiences sexual problems relating to their MS at some time or another, but very rarely is it talked about. I decided to create these modules and pull multiple sources together to get things out in the open. People tend to be uncomfortable bringing up the topic of sex, and reactions when they do are often equally as uncomfortable. It's almost like sex is a dirty 4 letter word - only it has 3 letters.

Well, let's get that discomfort out of the way first thing, shall we? :-)

Today, there is more and more information available on MS and Sexuality - from the MS Clinics and on the Internet. But.. alot of that information remains dry technical analysis and basic "1,2,3's" for dealing with problems. I still remember clearly my doctor's reaction when I bravely brought up the questions about some of the strange symptoms I seemed to be having regarding my sexuality. When I explained my lack of sensation, he quickly stated "Oh, that's just pereneal numbness. Nothing we can do about it." Then he quickly jotted something down on my chart and moved on to other issues. In other words - next topic, please...

This reaction proved to be quite typical in the medical community - technical definitions and dry information sheets, but no real understanding nor practical tips. This is where I want to help bring about a change in the MS Community regarding how it handles issues of sexuality.

Healthy sexuality involves mutual affection, warmth, tenderness, physical touch, and love - not just intercourse or genital contact! Once diagnosed with MS, many people forget that they enjoy physical closeness for many needs, not only for sexual release and orgasm. As our sexual needs change because of aging, illness, and family demands, it is important to continue meeting needs for touch, affection, and love.

In a recent study, 63% of people with MS reported that their sexual activity had declined since their diagnosis. Other surveys suggest that as many as 91% of men and 72% of women may be affected by sexual problems. Ignoring these problems can lead to a major loss in quality of life.

Sexual Changes

The following information is abbreviated and referenced from MSIF - Sexual Changes in MS and from the National MS Society - MS and Intimacy.

The ways in which MS can affect sexuality and expressions of intimacy have been divided into 3 categories: primary, secondary, and tertiary sexual dysfunction.

How MS can affect Sexuality

Primary sexual dysfunction

This is defined as a direct result of neurological changes that affect the sexual response.

In both men and women, this can include a decrease or loss of sex drive, decreased or unpleasant genital sensations, and diminished capacity for orgasm. Men may experience difficulty achieving or maintaining an erection and a decrease in or loss of ejaculatory force or frequency. Women may experience decreased vaginal lubrication, loss of vaginal muscle tone and/or diminished clitoral engorgement.

Secondary sexual dysfunction

These are symptoms that do not directly involve nervous pathways to the genital system, such as bladder and bowel problems, fatigue, spasticity, muscle weakness, body or hand tremors, impairments in attention and concentration, and non-genital sensory changes.

Tertiary sexual dysfunction

This results from disability-related psychosocial and cultural issues that can interfere with one's sexual feelings and experiences. For example:

*** Some people find it difficult to reconcile the idea of being disabled with being fully sexually expressive. Changes in self-esteem-including the way one feels about one's body, demoralization, depression, or mood swings-can all interfere with intimacy and sexuality.

*** The sexual partnership can be seriously challenged by changes within a relationship, such as one person becoming the other's caregiver.

*** Changes in employment status or role performance within the household can lead to emotional adjustments that can temporarily interfere with sexual expression.

*** The strain of coping with MS leads to a serious lack of open communication between a couple about their respective experiences and their changing needs for sexual expression and fulfillment.

Me and Multiple sources

In practical terms, this boils down to the following typical symptoms.

In Women

# Reduced sensation in the vaginal/clitoral area, or painfully heightened sensation
# Vaginal dryness
# Trouble achieving orgasm
# Loss of libido

In Men

# Difficulty achieving or maintaining an erection (by far the most common problem)
# Reduced sensation in the penis
# Difficulty achieving orgasm and/or ejaculation
# Loss of libido

In both genders

# Spasticity can cause cramping or uncontrollable spasms in the legs, causing them to pull together or making them difficult to separate-either of which can make positioning difficult or uncomfortable.
# Pain can interfere with pleasure.
# Embarrassment can be caused by bowel or bladder incontinence.
# Weakness and fatigue interfere with libido and function.

Some of the "tools" that can help with fatigue and loss of sensation are various vibrators and "toys" that can be found on the market today. There are a lot of different taboos and feelings around vibrators and sexual assists. There is no embarrassment in learning to be creative and getting the most out of the sexual experience. Vibrators can help in a lot of ways! Discuss this opportunity with your partner and join in the experience of choosing the right option and buying them. Trouble with spasticity and concentration? Add some wonderful essential oils and some erotica for a new and exciting experience.

How does this Affect us Emotionally?

When sexual difficulties start cropping up, you may have a multitude of conflicting thoughts and emotions, such as:

* Denial (I don't have a problem.)
* Blame (It's not my problem, it's his!)
* Fear and uncertainty (Will it work this time?)
* Anger (Leave me alone - I am too tired!)
* Guilt (Can I satisfy her anymore?)
* Confusion (What is happening to me? Don't I love him anymore?)

This is normal! Remember, the first rule to any resolution is open communication - so communicate with your partner! You may find it helpful to consult with a counselor trained in the issues of chronic illness.

Doctor explores physical causes of fatigue

2007-09-03T19:48:00.000-05:00

Coping with Fatigue in MS Takes Understanding and Planning

Doctor explores physical causes of fatigue

Alexander Burnfield, M.B., M.R.C. Psych.

Editor's Note: The following article was adapted from a speech by Dr. Alexander Burnfield to members of Action for Research into Multiple Sclerosis (ARMS), a British organization dedicated to raising money for research and sponsoring telephone counseling services to its members. Dr. Burnfield is a psychiatrist who has M.S.

What Do We Mean by Fatigue in Multiple Sclerosis?

Fatigue is a sensation that is both universal to all and very specific to people who have multiple sclerosis. The fatigue that all people experience is due to tiredness and weakness affecting muscles after exercises or exertion. In multiple sclerosis, that fatigue that many people have is rather different since the nervous system as well as the muscles are involved.

The cause of MS fatigue is not fully understood. What may happen is that great difficulty is experienced in the transmission of nerve impulses along demyelinated nerves. The strength of the impulses is much reduced, resulting in feelings of weakness and tiredness. Sensory nerves as well as motor nerves are involved in this kind of fatigue.

Fatigue of motor nerves can cause weakness, a tired heavy feeling of muscles, incoordination and shakiness. Fatigue of sensory nerves, which help us to see, to hear, to taste, to smell and enable us to distinguish how objects feel, can cause problems in one or more of these senses. When we are fatigued, we don't just experience a heaviness, but we may also have blurred vision, numbness, or other difficulties in the sensory system.

Fatigue in multiple sclerosis may be brought on by exertion, but it can also occur for other reasons. It has been discovered that fatigue can be caused by eating a heavy meal, by smoking and by hot temperatures; for example, having a hot bath. This last experience is so universal that a "hot bath test" has been developed for MS. I expect that this is your experience too, because it has been well documented by research into MS and fatigue. The results can be experienced as heaviness or impaired vision after exercise.

I remember when I first developed MS, I had pain in my left eye with a strange feeling in the corner of my vision, I kept looking up but there was nothing there. A few weeks later I was playing tennis, and I suddenly felt very tired, after quite a short game. I noticed that my vision was considerably impaired. All I could see was my opponent's legs, then suddenly a tennis ball hit me on the head, and I hadn't a clue where it had come from! That was my introduction to "scotoma", a blind spot in the vision. It had been brought on by exercises and hot weather.

Old symptoms may return if you are fatigued. If you have been exercising or having a hot bath, you may find that symptoms experienced during a previous relapse come back. Sometimes you may wonder whether you are having another attack. I once had a very late night and when I lay down to go to sleep, I had severe vertigo. I though, "Oh no, not another relapse!" It wasn't. I was just very tired, and it was the effect of fatigue. It soon cleared up.

MS fatigue seems to happen faster than ordinary fatigue. For instance, if I begin to dig the garden, I start off well but about three or four minutes later, I feel very tired indeed. I used to wonder what the devil was going on, and my wife thought that I was trying to get out of the work! (That is a problem I will deal with later - the problems that fatigue causes psychologically and in relationships.)

If I hadn't had MS, I should have been able to dig in the garden for about an hour before fatigue was experienced. Recovery from MS fatigue also takes much longer than from ordinary fatigue. When I have had a hot bath or too much exercise, I have to lie down for a least half an hour before I recover.

Some people find their speech become worse after exertion or being overheated, or fatigue may cause tingling in the hands and feet, like pins and needles. It varies very much from individuals to individual, so one person with MS may have much less fatigue after exertion or hot baths than another.

What Causes Fatigue in MS?

Signs and symptoms are exaggerated after exertion or overheating or infection. "Signs" can be detected by the neurologist when he or she examines you (reflexes that are exaggerated or inverted, weakness, poor coordination). The "symptoms" you yourself feel - heaviness in a limb; blurring of vision. There may be no corresponding signs that the neurologist can find. I began to lose faith in neurologists to some extent because they often told me there was nothing wrong with me, and that my symptoms would completely disappear. I was assured several times that my vision was normal, but I knew subjectively that it wasn't. I was also assured that the tingling sensation would disappear from my hand, which it hasn't completely.

A lot of demyelination takes place in our brains and spinal cord when we have MS without necessarily producing any symptoms or signs. There can be myelin damage that, for the moment, is not causing either symptoms or signs that a neurologist can detect.

What happens after exertion or after a hot bath? The person experiences more of the neurological damage caused by the disease: he feels more tired; his vision appears worse to him; he has pins and needles; he feels almost flu-like, with a horrible feeling of fatigue. This illustrates why the hot bath test is useful in testing for multiple sclerosis. If you feel there is something wrong with you, but don't show any neurological signs on examination, you might be given the hot bath test. If signs show up after the bath, the neurologist could then say, "yes, there are signs of MS. There is neurological damage".

In some people the signs and symptoms of multiple sclerosis remain silent their entire lives. A Swiss pathologist (someone who studies damaged tissues) discovered that, out of a series of people who had MS identified by post mortem examination, about one in five had not been diagnosed clinically. No one, including the people themselves, knew they had MS. If their conditions were illustrated by a triangle, you would just see a large silent area. Perhaps when they were fatigued or ill, some slight symptoms may have been present, but possibly as a sign ever showed up. Some of them may have been diagnosed as having a condition other than MS.

To summarize, when we become fatigued, we have a shift downwards. We become more aware of the symptoms, and the signs of the disease become more obvious to an observer.

Problems Caused by Fatigue in MS

Unfortunately, having fatigue can cause a lot of problems - physical psychological, family and social. Physical problems are perhaps the most obvious at first. For instance, you can't do the same job, if you are manual laborer, without getting very tired and exhausted. Fatigue may cause problems in other parts of your life as well. It may be more difficult to look after children who are young and active; it may be impossible for your sex life to continue in the same way as before.

Psychological problems can develop if an early diagnosis is not obtained. People wonder what these strange feelings are that they have when they are tired. They wonder why the symptoms occur, why the doctor says there is nothing wrong with them, and why, after they have been to see the doctor several times, he or she seems to suggest that they are neurotic! It can happen that people who have MS are labeled as having psychiatric problems in the early stages. In some cases, MS may not progress beyond the feeling of tiredness of blurred vision and may therefore, never be diagnosed.

Even after MS is diagnosed, it is difficult for doctors (general practitioners especially, who may only see two or three people with MS in their practices) to understand the objective side of MS, the symptoms that we have. Neurologists see more people with MS, but they don't see them regularly, and they don't get to know them as people. Therefore, for different reasons neurologists my fail to pick up what is fatigue and what is a reaction to having a chronic disease like MS - a feeling of depression or anxiety.

People with MS are often depressed and worried about what is happening. this is a natural reaction. Unfortunately, the symptoms of anxiety and depression are similar symptoms to those of fatigue. You experience heaviness, a lack of energy, a feeling of tiredness. Who is to say what is depression and anxiety and what is MS? It is extremely difficult to tell as I myself found out when I experienced heaviness, a lack of energy, a feeling of tiredness. Who is to say what is depression and anxiety and what is MS? It is extremely difficult to tell as I myself found out when I experienced all these things at once. The result is that, as you become more depressed, the more you wonder what is gong on. Until you have sorted it out with help and understanding -- by talking it over with someone else who has MS, perhaps - you have to deal with a lot of anxiety. I think one of the values of self-help groups is to enable people with MS to share their experiences. After talking to others, they often feel relieved and know that their feelings are normal. They are not the psychiatric causes the feared themselves to be!

I mentioned that problems can occur in relationships because of fatigue. In my case, Penny (my wife) complained I was trying to get out of doing the gardening. I had fatigue which I couldn't understand or accept, so I would persist in trying to garden, but then find out that I just had to sit or lie down for a while. When we talked to other people with MS, we discovered that what was happening was normal. Now we make allowances. She does the practical, manual things about the house, and I do paperwork and things which don't require so much physical effort. We have adjusted, I have changed my role, and she has changed her role. I think it is very important that the role changes be tackled head on, and that people be encouraged to change roles realistically. This requires understanding by all members of the family, not just the person who has MS.

Role changes also apply to sexual activity. If the more sexually assertive partner develops MS, it may be necessary for the other person to become more active. Otherwise, their enjoyment of sexual relations may be impaired and may completely stop. It may even cause marriage breakdown if they misunderstand each other. The partner without MS might think the other one isn't interested anymore. A lot of problems relating to the sexual side of life occur in healthy people, so it is not surprising that people who have MS experience them as well. I am only dealing with fatigue now, but, of course, other sexual adjustments may have to be made as well. (For more information, please see the booklet Sexuality and Multiple Sclerosis, available from the Multiple Sclerosis Society of Canada.)

What Can be Done to Help?

In relieving the effects of fatigue, I think it is most important to understand, to realize that fatigue does occur, and that it is an integral part of having MS. It is important not only for us to understand it, but also for our relatives and our employers to understand and help us make adjustments in our lifestyle. It is important to express our feelings and our worries, and to talk with other people with MS who have experienced fatigue so we can work out how it affects us. I think it is also important that those in the health care professions such as nurses, doctors, physiotherapists and occupational therapists understand fatigue. They must understand that MS can cause fatigue which can show up to varying degrees in different people. Therefore, education for health care professionals must continue.

I think it is absolutely essential that we keep physically fit. We can't do much about our nerves, except avoid hot baths. I suppose, but we can keep fit within the scope of our physical abilities. We don't usually expect to do athletic - running, for instance, but we can get exercise in other ways. Exercise must not be overdone, but it must be sufficient to keep you fit. Each person should arrange a balanced program that fits his or her likes - swimming, yoga, calisthenics, whatever. I have found the best routine for me is to exercise fairly strenuously twice a day and follow the sessions with a short rest.

Other points to follow: Give up smoking. Lose weight if you are overweight. Follow a sensible diet. If you follow the recommendations of Canada's Food Guide, you will be getting a balanced diet. For more information, ask your doctor or have him or her refer you to a dietitian.)

You must plan your work. Outline your social occasions and your late nights so they don't all come in a row. Unfortunately, it doesn't always work out very well in practice, and I sometimes find I am going out every night of the week. I realize I am in danger of causing a relapse, but sometimes it is very difficult to plan ahead. But we do need willpower, and we must be able to say "No". Moderation must be the word so that we don't overdo, and yet don't opt nothing and underdo.

There are some specific activities, as well, that we can do to deal with fatigue. Physiotherapy can help people regain the use of muscles after a relapse. Coordination exercises are also important. Yoga can be helpful, as well. Yoga is a form of physiotherapy. It is also a form of forming a discipline. One of the main principles of yoga is that you never do anything beyond your capability. It is completely non-competitive. You go to your own limit and no more and therefore, it is ideally just for people who have MS. To quote a woman who had been involved with yoga for sometime:

"I know, of course, that yoga will not restore nerves and muscles which have been irreparably damaged by MS, but it is certainly helping me to maintain a better standard of general health than previously, and the breathing exercises and relaxation have resulted in a calmer state of mind and a happier outlook. Yoga has given me a new interest in life, and also introduced me to a new circle of faces and kind friendly people."

That is it exactly. Yoga doesn't do anything to nerves which have been damaged, but it is one way of keeping fit, and by joining a group, you make sure you receive regular exercise.

Yoga combined with a rest/exercise program of a more traditional sort could be a good way of planning one's life. It is in my day. I don't pretend to be a paragon of virtue, but every morning I spend about four minutes doing press-ups and yoga, and I do another four minutes in the evening. That is only eight minutes a day, but I do it every day and if you add it up over a month, it is quite a lot of exercise. The important thing is not the length of time, but the regularity.

An additional benefit of regular exercise, some people report, is the reduction of muscle spasms. Spasms occur when a muscle goes into a strong contraction and doesn't relax. It can be quite painful. In some people they occur when they are fatigued, so by following a regular regime of exercise and rest, they are able to avoid this particular complication. Specific medications can also help prevent muscle spasms.

Summary

In conclusion, Fatigue is very much a symptom of multiple sclerosis but one that can be managed if it is understood. Fatigue may be experienced as overwhelming tiredness (lassitude) or as sensory difficulties - blurred vision, slurred speech, pins and needles, numbness. Fatigue may be brought on by exertion, heat infection or overeating. When fatigue is experienced, the signs and symptoms of MS become more pronounced. Unless fatigue is recognized and understood, people who have MS may be thought to have psychological problems by their families, friends and employers. Talking with others who have MS is a good way to understand the problems fatigue can cause and to learn methods of overcoming them. A regular exercise program is helpful in becoming and staying fit. Moderation is the key to leading a full and happy life, but occasionally, extremes give spice.

Bladder Issues in MS

2007-09-02T17:43:00.000-05:00

Bladder Issues in MS

urgency, frequency, mixed

Did you know that bladder symptoms are common in people with MS? An MS'er may experience urinary urgency, frequency, incontinence (wetting oneself) or retention (difficulty passing urine). Sadly, this is probably one of the most undertreated and misunderstood symptoms until it REALLY becomes a problem.

Bladder function tests such as post-void residual ultrasounds and urodynamic studies can pinpoint the source of bladder problems so the correct medication and treatment is appropriately prescribed. In addition, urologic follow-up may involve testing of the bladder muscle strength and muscle tone so that the proper intervention may be prescribed.

Rather than restricting fluids to disguise the problem, it is recommended that people with MS talk to their healthcare providers for follow up. Restricting fluids can cause urinary tract infections and affect bowel function as well.

It is also recommended that people self-monitor for changes in urinary function creating a voiding diary which can be used during certain timeframes and check the color of their urine. For example, suddenly darkened urine with no symptoms might be an early indication of an oncoming infection.

Urinary tract infections, which are caused by an overgrowth of bacteria in the urine, are treated with antibiotics. Testing the urine can reveal the type of organism causing the infection, so the correct antibiotic is selected. Burning on urination and foul smelling urine should be investigated, as they are likely signs of a urinary tract infection.

In some cases, urine must be emptied manually by threading a small tube (intermittent catheter) through the urethra and into the bladder.

Select list of medications commonly used to treat bladder problems:

Tofranil® (Imipramine)
Ditopan XL®, Oxytrol® Patch (Oxybutynin)
Detrol®, Detrol LA® (Tolterodine)
Vesicare® (Solifenacin)
Sanctura® (Trospium)

Diagnostic Criteria for MS

2007-09-02T07:30:00.000-05:00

Diagnostic Criteria for MS

Exactly how is MS diagnosed?

Those of us who have MS know just how frustrating the process of diagnosis can be. Those who are in MS diagnostic limbo (affectionately called "Limbo-landers" in the MS-community) know equally as well how painful the process can be. For many of us, the diagnosis involves putting many pieces of a puzzle together in order to arrive upon a diagnosis of MS. Some people present with a very clear diagnostic picture and with others, the disease can masquerade many different things for years.

There are no laboratory tests, symptoms, or physical findings that can, by themselves, determine if a person has multiple sclerosis. Furthermore, there are many symptoms of MS that can also be caused by other diseases. Therefore, the MS diagnosis can only be made by carefully ruling out all other possibilities.

The long-established criteria for diagnosing MS are:

There must be objective evidence of two attacks (i.e. two episodes of demyelination in the central nervous system). An attack, also known as an exacerbation, flare, or relapse, is defined clinically as the sudden appearance or worsening of an MS symptom or symptoms, which lasts at least 24 hours. The objective evidence comes from findings on the neurologic exam and additional tests.

The two attacks must be separated in time (by at least one month) and space (indicated by evidence of inflammation and/or damage in different areas of the central nervous system).

There must be no other explanation for these attacks or the symptoms the person is experiencing.

Since 2001, the McDonald Criteria for Diagnosis of MS have been used worldwide.

An updated list of my symptoms and what they mean

2007-08-30T16:21:00.000-05:00

An updated list of my symptoms and what they mean...The ones that are bigger/bold are the ones I have the MOST problems with....

AtaxiaDefective

Muscular coordination especially when voluntary muscular movements are attempted

Speech Ataxia

Stuttering or problems with even flow of speechVertigo

Anxiety

The unpleasant emotional state consisting of psycophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intra-psychic conflict

Cognitive dysfunction

Short-term and long-term memory problems, forgetfulness, slow word recall

Dysphasia

Inability to speak words which one has in mind or to think of correct words, or inability to understand spoken or written words. Symptom common to tumors of the dominant cerebral hemisphere, particularly the frontal, temporal and parietal lobes.

Mood swings, emotional lability

Oscillation of a person's emotional feeling tone between periods of euphoria and depression

Babinski's

The Babinski's reflex is where the great toe flexes toward the top of the foot and the other toes fan out when the sole of the foot is firmly stroked. This is normal in younger children, but abnormal after about 2 years old.

Clonus, Myoclonus

A form of movement marked by contractions and relaxations of a muscle, occurring in rapid succession, twitching or spasm of a muscle or a group of muscles

Paraparesis

Weakness affecting the lower extremities

Anaesthesia

Numbness, loss of feeling or sensation.

L'Hermitte's

Shock or buzzing sensation that travels down the trunk or into an arm or leg when the head bends forward

Paraesthesia

Perverted sensation, an abnormal sensation, such as, buzzing, tingling, numbness, burning, prickling, formication

Optic Neuritis

Inflammation of the optic nerve. This may occur secondary to a wide variety of causes: multiple sclerosis, posterior uveitis, vascular lesions of the optic nerve (interruption of blood supply to the optic nerve), temporal arteritis, central retinal artery occlusion, methyl alcohol poisoning, drug side effects and acute demyelinative disease of the optic nerves (destruction of optic nerve sheath). Blurred vision, eye pain, loss of color vision, blindness

Lassitude

An overwhelming tiredness that occurs for no reason. One awakens and feels fine but soon feels tired and sleepy, with no specific work. Often it becomes near impossible to function or think clearly.

A Magical Potion...

2007-08-30T01:25:00.000-05:00

A Magical Potion...

Morning Dew

The world awakens each day from its nightly slumber, transformed by a sparkling layer of morning dew on the grass, on flower petals and leaves, on cars and car windows. These glistening droplets last only a little while, an integral part of what imbues the early morning with its aura of magic. If we sleep too late, we miss the magnificent display of sunlight playing upon an infinite amount of tiny crystal balls. To step onto the dew-covered grass is to anoint our feet with a form of water that comes only once a day for a short time, a rarefied gift of the night air that will soon evaporate in the full light of the sun. If we inhale slowly and consciously enough, it is almost as if we are drinking in this magical elixir formed in the boundary between darkness and light.

In one myth, morning dew is believed to be tears from heaven, and in another, the droplets are poured from the vessel of the goddess of dawn. When we see the earth draped with these shimmering drops, it is easy to imagine fairies bathing in the water, or a sky god weeping from a longing to be closer to his beloved earth goddess. Seeing the sparkling beauty of the earth emerging from darkness, we may understand this longing in terms of our own gratitude; how blessed we are to be here.

Perhaps heaven really does long to be here on earth, and perhaps that is why we are here—as conduits between the divine and the earthbound. As we drink the morning dew in with our eyes, our skin, our breath, it is easy to imagine that it really is a magical potion, a gift from heaven, a reminder of our true purpose, and a daily opportunity to be transformed.

**thanks Nic...you are the best**

About damn time!

2007-08-25T20:40:00.000-05:00

Current mood: drained
Category: Life

Finally some good news!

This week I got my MRI results…..
No newly enhancing lesions!!!!

I do have 3 new lesions, but they are very small, and like the older lesions they are not active (active meaning at the time of the scan there was no NEW damage taking place) It appears that the Avonex injections are working and my Multiple Sclerosis is starting to stabilize! If this is the case then I should be able to stay at my current level of functioning and not "accumulate" any more disability!!!
There are some other issues that need to be addressed….like my liver enzymes are starting to become elevated (the Avonex can be liver toxic) so they will check it again in 6 weeks instead of 3-6 months. I am crossing my fingers that my liver is going to hold up to this poison with all the other crappy pills I have to down each day.
Also I have been having a lot of severe joint and muscle pain that can not be attributed to my MS so they did some rhumatological blood work and one of them (the c-reactive protein that tests for inflammation) was very high….sooo I am awaiting a work up by a Rhumatologist on October 1st. My Neurologist said that many of his MS-ers have a related Rhumatological disorder and it would not at all be uncommon…..now I just have to WAIT which most of you know I hate!!!

Does it ever end?

2007-08-10T03:36:00.000-05:00

Well dammit to hell

I got a call from the MS Center today...the blood work they took on Monday is abnormal and I have to go see a Rheumatologist on October 1st

Ok so maybe I have to admit the MS doctor is right that my MS is not the only thing causing my body to be in hell right now....ugggh I was kinda hoping that even with his lack of bedside manner or effective people skills that he was just trying to be over cautious. I don't know how much more of this crap I can take I have been at such a breaking point lately

6 week follow up ends in ANGER!

2007-08-07T21:12:00.000-05:00

K....so I had a 6 week follow up with my doctor at the MS Center yesterday and I feel like I am going to explode--I have been stewing for near 24 hours now !!!!!!!!!!!!!!!!!!!!!!!!!!!

I have been having major issues with my vision....and well I am terrified I am going to lose my sight, Anyways I was going over that as well as all the other "issues" with the MS doctor who is very quiet and does the standard full neurological exam...types in his computer....pulls up my spinal tap and MRI from a year ago June and looks at me and says well you have a clear positive spinal tap and MRI but what I see on your exam today and what you are telling me does NOT FIT INTO MY TEXTBOOK OF MS-- WTF! I am thinking he has got to be kidding me right? He just keeps looking at me and I finally say ok....he looks at my last set of labs, pulls on my arms a few times and says I think I have said this before, but I think this is not entirely MS ok I say well what IS IT then and he says well if it were malignant or tumors you would be dead by now is this guy kidding me? Did he just say that? I said well I thought MS was not a "textbook disease" he said yes that is true but all your symptoms point to a lesion where ever the hell he spouted off and I can't find one.

He says I want to test you for lupus.... I say that was ruled out before I got the diagnoses of MS....he says well lets just test you again FINE WHAT EVER :chatter We will run a few other tests as well as I just can't say all of this is MS related. :anger I thought we had cleared this up a year ago!!! Why do I have to do this all again? I am just so pissed off...but hey-at least its not a tumor or I would be dead, right?? :dunce

This guy is suppose to be the best. For heavens sake he is the director of research and people come from around the world to see him---WHY IS HE ACTING LIKE A FREAKING IDIOT?

Gumby

2007-03-15T23:29:00.000-05:00

It is the middle of the night when I wake up. Everything is very bright and very vivid looking. I have the horrible prickling feeling in my neck face and scalp and I am fairly positive that it is yet another seizure. I remember not being able to feel my right arm which is a fairly common occurrence so I grab it with my left arm to shake it a bit and make sure it is "still there" an odd little habit I have developed....as if it were just going to disappear! Anyways I lift it up and totally freak out because it is very soft and “puffy” feeling and when I look down it is easily swollen to 4 times that of the other arm and about 4 or 5 inches longer. I am looking at myself, but I don't look like me....I look like Gumby-hell I kinda feel all stretched like you gotta imagine Gumby felt!! After freaking out for a bit I get out of bed and to convince me that I was ok and didn’t need to go to the hospital because my arm was- well... who knows what I thought it was going to do (fall off maybe???) I took out the measuring tape and measured it both around and in length and of course it was fine (I did this 4 times just to be sure!!). After I was able to stop obsessing about my arm for a few minutes I noticed that Gumby had taken over basically the right side of my body. My left side remained normal-this was so freaking weird! Anyways being most of my brain lesions are in my Occipital Lobe I found something that made sense (after an entire day of trying to figure out WTF happened to change me into Gumby...and no I didn't call the doctor...but I will be sure to tell him when I go in a few weeks)

Simple Partial Seizures-Occipital and parietal lobe epilepsies-

Sensations: All five senses -- touch, hearing, taste, smell, and sight -- are controlled by various areas of the brain.

Simple partial seizures in these areas can produce odd sensations such as a sense of a breeze on the skin; unusual hissing, buzzing or ringing sounds; voices that are not really there; unpleasant tastes; strange smells (also usually unpleasant); and, perhaps most upsetting of all, distortions in the way things look.

For example, a room may suddenly seem narrower, or wider, than it really is. Objects may seem to move closer or get farther away. Part of the body may appear to change in size or shape.

Somatosensory features in epilepsy are body image disturbances, such as feeling of movement or altered posture in a stationary limb, feeling of floating, twisting or even disintegration of a body part. Illusion of distorted or changed body shape is another phenomenon, where a body part may be felt as swollen or shrunken (macro- and microsomatognosia), or elongated or shortened (hyper- and hyposchematica). The peripheral parts of the extremities and tongue
are most commonly affected. Other described disturbances are unilateral asomatognosia - where absence of a body part, limb or the hemibody is experienced - and sensation of a supernumerary or phantom limb. Some parietal seizures may resemble panic attacks.

I gotta go, I gotta go- I gotta go right now!

2007-03-13T00:10:00.000-05:00

Oh, no not again! uuuugh ok how many times can one girl possibly have to pee in one day? I mean seriously this has been completely absurd this past week not to mention annoying as hell. In just one trip to the store the other day I had to stop and drag Manda to the bathroom no less then FIVE times....she finally started to protest (rather loudly I might add) Oh, mom do you HAVE to pee again? Ahhh just one of the many endless joys of life with this MS crap....but hey at least I have not starting peeing my pants!

MS blog - HealthTalk » Death from multiple sclerosis

2007-03-10T13:44:00.000-05:00

MS blog - HealthTalk » Death from multiple sclerosis

March 9, 2007

Death from multiple sclerosis

Last week, I mentioned I was researching the topic of MS mortality and promised to finish the thought at another date. Well, kiddies, grab your blankets and huddle round the campfire because we’re gonna have us a scary story.

People do not die from MS, the same way that people do not die from falling off a bridge; they die from the landing.

It is extremely rare that disease activity creates a lesion that will stop vital life function. It is not so rare, however, that disease activity causes issues that lead to death.

In one study I read, from Canadian researchers; out of 119 MS patients whose cause of death could be determined, 47.1% (or 56 deaths between 1972-1988 ) “were directly attributed to complications of MS.”

That’s HUGE; 47.1%! So much for MS is not fatal.

Of the remaining 63 deaths where cause could be determined, 28.6% (or 18 people) were suicide. According to the study it seems that between 1972 and 1988 “The proportion of suicides among MS deaths was 7.5 times that for the age-matched general population.”

We must, obviously, take into consideration that there were no MS drug treatments during this study and that it looked at patients at only two MS clinics. Also, other statistics seem to indicate that life expectancy of people with MS is not decreased from the general population by any significant number. Still the knowledge from the above study is worth knowing.

I found a frank and thoughtful assessment of death from MS complication at the Web site “MS Sucks” (multiplesclerosissucks.com/death.html). I’ve done my homework, and the statements made about these “complications” are considered medically/scientifically factual.

The good news, touted in studies and just about every MS patient organization is life expectancy. Seems we live an average of over 35 years post-diagnosis with MS. That number is sure to be going up as we catch the disease earlier and use of disease modifying drugs.

Help Impact Research Funding Decisions for 2008

2007-03-07T13:19:00.000-05:00

Help Impact Research Funding Decisions for 2008
Ask Your Representative for a 6.7% Increase for NIH

Take Action!

Congress is starting to work on fiscal year (FY) 2008 funding for the National Institutes of Health (NIH) now. If you call your Representative's office soon, you can impact those decisions and help secure more funding for the NIH that could benefit people living with multiple sclerosis (MS).

At this point in the budget process, your Representative can submit a letter to the Labor, Health and Human Services, and Education Appropriations Subcommittee to request an increase for the NIH in FY 2008. These are known as program request letters and they are due by March 16.

Call 1-800-828-0498 today and ask for your Representative. Or click above to take action.

Ask your Representative to support a 6.7% increase for the NIH in FY 2008 in their program request letter to the L-HHS-Ed Appropriations Subcommittee.

Be an MS activist. Join the movement at www.nationalMSsociety.org/advocacy

i'm MAKING A DIFFERENCE!

2007-03-07T08:36:00.000-05:00

m is a new initiative from Windows Live™ Messenger. Every time you start a conversation using i’m, Microsoft shares a portion of the program's advertising revenue with some of the world's most effective organizations dedicated to social causes. We've set no cap on the amount we'll donate to each organization. The sky's the limit. There's no charge, so join now and put our money where your mouth is.

i’m is about making a difference. Not in a huge expensive way, not in a time-consuming way. But in a simple, effective way.

You won't have to change your conversation to change the conversation. With every instant message you help address the issues you feel most passionate about, including poverty, child protection, disease, and environmental degradation. It's simple. All you have to do is join and start an instant messaging conversation. We'll handle the donation.

Once you've signed up, every ad you see in your message window contributes to the grand total we send to the causes.

Understanding What Having MS Means (a great find from my MS support group)

2007-03-06T21:31:00.001-05:00

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and it's effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand... These are the things that I would like you to understand about me before you judge me: Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too. Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm still not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to. Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not "look sick", but we are. Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would! Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon. Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse.

Finally some positive news!

2007-02-26T20:44:00.000-05:00

The results from my echocardiogram came back fine. There is no damage to any of my heart valves, but I will need to take medication to regulate my murmur. We have decided to give the Avonex a try yet again (as it has the best "long term use potential with the least adverse reactions) crossing our fingers that it was actually the topamax (http://www.drugs.com/topamax.html) giving me all the problems and this time I will be able to tolerate it. I started back on 1/2 dose injections today and after 4 weeks I will go to 3/4 then with any luck a full dose....WISH ME LUCK!

Pain and pity party

2007-02-03T01:40:00.000-05:00

Nope...nothing else-just pain. I have been in HORRIBLE pain now for about two weeks and have taken every drug under the sun and it won't stop. Hell the last three days I can't even get it to let up even a tiny bit. Tonight after Perocet 7.5 and 2mg of Xanax I just want to cry. I was so grumpy with the kids tonight so to top it off I am feeling like a horrible mother. I don't want to be *that* mom, but sometimes I just can't take even to stand up for one second longer and all I want to do is crash or have five little seconds to sit down and try to catch a second wind - but they don't understand. I know they could not possibly and honestly I want to protect them from what is going on with mommy-I don't want them to have to see me in the wheelchair- I don't want them to find me collapsed on the kitchen floor which once Manda did (I had about about 20 seizures that day) and about three weeks ago Matthew did after I fell with a pot of hot oil I was cooking with-this is my leg 2 weeks after it happened...

It looks about 65 or so % better then it did...trust me it was bad. The poor boy was so freaking out and I felt so bad for him. I was in so much pain and all I could think about was trying to compose myself so I didn't scare him. I need more energy and mental focus...I try so hard not to take any pain medicine when I am home alone with them, BUT then when Peter finally gets home it is so bad what I can take does not help very much. Peter's mom has had to go back to work full time and I am 100% on my own all day long-I am scared to death because I don't know how much longer I can handle this and at the same time I have no choice. It is what I HAVE to do and my heart is being crushed into little bits because I don't know how...Hell I can't even take care of my puppy that I love so much. She is a lab and a high energy dog. We got her before I got sick and I had all this energy to give her and bless her she IS a good dog but she is not getting what she needs either and she is starting to act up because of it too. I just don't know what to do. I don't know where to go from here. I have no answers and no way to make this stop-it is finally starting to break me down. Please pray for me-I don't what else to do....

Echocardiogram with Doppler Color Flow

2007-01-26T23:50:00.000-05:00

01/26/07

Well I took Manda and checked into Cobb Hospital @ the Cardiac Center today for my Echocardiogram with Doppler Color Flow. This is suppose to be what tells us how bad the Avonex injections damaged my heart. My murmur is still very prominent and I was in tachycardia the entire time (that is nothing new) Anyways my 30 minute exam took damn near two hours (on top of an hour of waiting time *grumble)

I will be sure to update here as soon as I have the results. For now I just keep waiting....

Ok-so here is some info-

What is an Echocardiogram: An echocardiogram is a test in which ultrasound is used to examine the heart. The equipment is far superior to that used by fishermen. In addition to providing single-dimension images, known as M-mode echo that allows accurate measurement of the heart chambers, the echocardiogram also offers far more sophisticated and advanced imaging. This is known as two- dimensional (2-D) Echo and is capable of displaying a cross-sectional "slice" of the beating heart, including the chambers, valves and the major blood vessels that exit from the left and right ventricle

An echocardiogram can be obtained in a physician's office or in the hospital. For a resting echocardiogram (in contrast to a stress echo or TEE, discussed elsewhere) no special preparation is necessary. Clothing from the upper body is removed and covered by a gown or sheet to keep you comfortable and maintain the privacy of females. The patient then lies on an examination table or a hospital bed

Sticky patches or electrodes are attached to the chest and shoulders and connected to electrodes or wires. These help to record the electrocardiogram (EKG or ECG) during the echocardiography test. The EKG helps in the timing of various cardiac events (filling and emptying of chambers). A colorless gel is then applied to the chest and the echo transducer is placed on top of it. The echo technologist then makes recordings from different parts of the chest to obtain several views of the heart. You may be asked to move form your back and to the side. Instructions may also be given for you to breathe slowly or to hold your breath. This helps in obtaining higher quality pictures. The images are constantly viewed on the monitor. It is also recorded on photographic paper and on videotape. The tape offers a permanent record of the examination and is reviewed by the physician prior to completion of the final report.WhatWhat

What is a Doppler Examination? Doppler is a special part of the ultrasound examination that assess blood flow (direction and velocity). In contrast, the M-mode and 2-D Echo evaluates the size, thickness and movement of heart structures (chambers, valves, etc.). During the Doppler examination, the ultrasound beams will evaluate the flow of blood as it makes it way though and out of the heart. This information is presented visually on the monitor (as color images or grayscalecalecale tracings and also as a series of audible signals with a swishing or pulsating sound)..

What information does Echocardiography and Doppler provide?
Echocardiographyaphyaphy is an invaluable tool in providing the doctor with important information about the following:

Size of the chambers of the heart, including the dimension or volume of the cavity and the thickness of the walls. The appearance of the walls may also help identify certain types of heart disease that predominantly involve the heart muscle. In patients with long standing hypertension or high blood pressure, the test can determine the thickness and "stiffness" of the LV walls. When the LV pump function is reduced in patients with heart failure, the LV and RV tends to dilateenlarEchocardiographyaphyaphy can measure the severity of this enlargement. Serial studies performed on an annual basis can gauge the response of treatment.

Pumping function of the heart canassessedechocardiographyaphyaphy. One can tell if the pumping power of the heart is normal or reduced to a mild or severe degree. This measure is known as an ejection fraction or EF. A normal EF is around 55 to 65%. Numbers below 45% usually represent some decrease in the pumping strength of the heart, while numbers below 30 to 35% are representative of an importdecreaseEchocardiographyaaphy

aphy can also identify if the heart is pumping poorly due to a condiknowcardiomyopathypathypapronoucardioamyooputhoputh-puth-e), or if one or more isolated areas have depressed movement (due to prior heart attacTechocardiographyraphyraphy can assess the pumping ability of each chamber of the heart and also the movement of each visualized wall. The decreased movement, in turn, can be graded from mild to severe. In extreme cases, an area affected by a heart attack may havmovemakinesianesianesia, pronounced neez-neez-neez-ya), or may even bulge in the opposite direction dyskinesianesianesia, pronouncedneez-neez-neez-ya). The latter is seen in patients with aneurysm (pronouanrizaumiz-umiz-um ) of the left ventricle or LV. It must be remembered that LV aneurysm due to an old heart attack does not usually rupture or "burst."

VFunction Echocardiographyraphy identifies the structure, thickness and movement of each heart valve. It can help determine if the valve is normal, scarred from an infection or rheumatic fever, thickened, calcified (loaded with calcium), torn, etc. It can also assess the function of prosthetic or artificial heart valves.
The additional use of Doppler helps to identify abnormal leakage across heart valves and determine their severity. Doppler is also very useful in diagnosing the presence and severitvstenosisnosisnosis (pronoustee stee-no-sis) or narrowing. Remember, unechocardiographyraphy, Doppler follows the direction and velocity of blood flow rather than the movement of the valve leaflets or components. Thus, reversed blood direction is seen with leakages while increased forward velocity of flow with a characteristic pattern is noted with vstenosisnosis.
Echocardiographyraphy is used to diagmitralitral valve prolapse (MVP), while Doppler identifies whether it is associated with leakage or regurgitation ofmitralitral valve (MR). The presence of MR frequently prompts the use of antibiotics prior to any dental or non-sterile surgical procedure. Such action helps reduce the rare complication of valve infection.

Volume status: Low blood pressure can occur in the setting of poor heart function but may also be seen patient'sent's have a reduced volume of circulating blood (as seen with dehydration, blood loss, use of diuretics or "water pill.", etc.). In many cases, the diagnosis can be made on the basis of history, physical examination and blood tests. However, confusion may be caused when patients have a combination of problEchocardiographyraphy may help clarify the confusion. The infevena cava cava (the major vein that returns blood from the lower half of the body to the right atrium) is distended or increased in size in patients with heart failure and reduced in caliber when the blood volume is reduced.

Other Uses of Echocardiogarphy useful in the diagnosis of fluid in the pericardium (the sac that surrounds the heart). It also determines when the problem is severe and potentially life-threatening. Other diagnoses (plural for diagnosis) made by Doppler echocardiographyraphy include congenital heart diseases, blood clots or tumors within the heart, active infection of the heart valves, abnormal elevation of pressure within the lungs, etc.

How safe is echocardiographyraphy? Echocardiographyraphy is extremely safe. There are no known risks from the clinical use of ultrasound during this type of testing.

How long does it take? A brief examination in an uncomplicated case may be done within 15 to 20 minutes. The additional use of Doppler may add an additional 10 to 20 minutes. However, it may take up to an hour when there are multiple problems or when there are technical problems (for example, patients with lung disease, obesity, restlessness, and significant shortness of breath may be more difficult to image).

A Doctor's view on Multiple Sclerosis?

2006-12-21T23:33:00.000-05:00

Written by Aleksandr Kavokin, MD, PhD

Well, the disease is really devastating when it is in advanced stage.

And that’s the real pity to see a young patient affected. Being in med school I was writing Student Medical Histories. Neurology rotations required to draw the chart of the human, where you pinpoint and mark the level of Neurological lesions.
You know, this is one of the beauties of Neurology – just talking to a patient and performing physical exam allows you to find the point of damage without even performing any high-tech stuff like MRI or CT. However, the bad part of story is that really very few neurological disorders can be completely cured.Some

say that neural cells never recover. They do. Some recent studies found stem neural cells, which supposedly can repair damaged areas. And a damaged nerve grows back though slowly – 1 mm a day at best. However, none of these facts really help people with massive damages. It does not look that own stem cells really repair our brain well – people stay paralyzed and crippled for years. Maybe those stem cells help mice in lab, but in clinics that’s still more fantasy than reality, though there were reports of neuron transplants (and at a time I did some research in a Neurosurgery lab where we implanted fetal cells into the rat’s brain to treat Parkinsonism). I saw paralyzed people with bed sores. Pity picture. So, the conventional wisdom that brain cells are not replenished probably still holds. Though, in experiments there is some ability for nervous regeneration.Anyway

, that time in med school I got to follow the history of patient with Multiple sclerosis. That was really not so pleasant to see young guy, younger than me, younger than 20 years, who is blind on one eye, has a paralyzed leg and unsteady gait. I marked all the lesions I found on the scheme and it was OK. What wasn’t OK I felt I wouldn’t be able to help him much. He actually did not look upset (which struck me), he was very lively, smiling and cooperating and looked like he used to his condition – that periodically something goes wrong – blind eye or non-working arm. Reading the books, I knew that the prognosis was not really great for him.

Yet, when multiple sclerosis begins suddenly with blurred vision or paralysis, doctors can recognize it easily. However, often in the beginning the symptoms vague. There is a discrepancy between what doctors see and what patient experience. Even worse – family suspects that a patient fakes his symptoms.

Commonly multiple sclerosis is relapsing-remitting - flare-ups go after remission. Sometime symptoms worsen quickly - progressive MS. About half of the patients go to progressive multiple sclerosis after 10 years.Multiple

Multiple sclerosis is not really common disorder, but it is one of the tough ones.

How do you fix a broken heart?

2006-12-17T22:21:00.000-05:00

Sunday, December 17, 2006

How do you fix a broken heart?
Current mood: worried

No...Peter and I are fine! Not the kind that is broken by love, but the kind that is just well broken?

It seems that I am adding it to my list of broken body parts. I have been having a very hard time with it these last two weeks

I will make this very short.....

STRIKE 2

Avonex = gallbladder infection/stones/surgery + multiple seizures and "allergic"type symptoms + brand new heart murmur (congestive heart failure we knew was a very teeny tiny remote risk with the medication, but dammit I went on a HALF of a dose!!) Half a dose and my brain and heart are having a total melt down on this stuff....I have been so sick for over two weeks now. I have spent more time at the hospital then home....Manda who is 2 even asked me when I was going to have to go back to the hospital uuuuugh and I am NOT looking forward to tomorrow. My incisions from my gallbladder surgery are all infected (from the stitches...for what ever reason when ever I get stitches my body rejects them. I failed to mention that to the surgeon...eek!) and I need to have them drained.

I NEED A MARGARITA!

Avonex or not?

2006-12-14T18:04:00.000-05:00

Thursday
12/14

Both legs feel like dead weights. Arms are heavy and tingly. Face continues to feel “fuzzy” mentally I am drained. Glad to be going to the doctor in the morning, but also a bit apprehensive…..I can accept the tingles in the scope of “normal MS” but I can’t the pounding heart/chest pain/metallic taste and burning lips. I want to know what the hell is going on to bring this change. Is it the Avonex? After all I am the world’s most sensitive person to medication. I hate to even think that, but I hated to think that with the Copaxone too and waited to speak up ‘till I was so sick I had to spend 4 days in the hospital.

Cold fire and metal?

2006-12-13T18:06:00.000-05:00

Wednesday

12/13

From my waist of is on cold fire…if that makes any sense, and my right leg is just dead. Just a floopy old useless leg today *sigh*

“THE” headache is also ultra intense today and my right eye vision has taken a beating. Still off and on metallic taste with burning in my throat/mouth and lips

---------woke me up 3 times in 3 hours trying to fall asleep tonight the metallic taste in my mouth and the burning and stinging in my throat was so bad it felt like I was being strangled. Heart feels like it is going to blast right out of my chest.

Go away....

2006-12-12T18:07:00.000-05:00

Tuesday

12/12/

Well my entire body is on fire again. Metallic taste in mouth is HORRIBLE! Good news chest pains and headache less horrible since going back on the Calan, but my god still there for sure. I wish I knew what the hell was going on.

Calan SR is my friend....

2006-12-11T18:08:00.000-05:00

Monday

12/11

Called primary and asked about the 240mg of Calan SR the Surgeon took me off of in the hospital. He told me to go back on it, and to “talk to neuro” about migraine medication at next follow up. Headache eased up finally!

Warm feeling starts in chest then moves up throat with an itchy tickle which then makes my lips burn…..this has been happening a zillion times a day now for a week and is the worse at night……

9th & 10th

2006-12-10T18:09:00.000-05:00

Saturday

12/9

Avonex ½ dose right thigh

Heart feels like it is pounding out of chest constantly and at times hard to catch my breath. Throat “stings” **headache still there**

Sunday

12/10

Severe chest pains, heart pounding ***go away headache***

Face feels fuzzy, arms and legs tingle

When will it Stop?

2006-12-10T01:33:00.000-05:00

Sunday, December 10, 2006

When will it Stop?
Current mood: scared

Somebody please answer that for me, because I am not sure how much more of this I can take. I have now officially cracked.....I am scared to death and past my mental ability to cope with what is happening to me.
I need this to stop and I need it to stop now. Yes I am sitting here thinking back over what my life has been this past week and I can't stop crying. I don't want to do this anymore. I don't want to be fine one second and the next be gasping for air as alarms are going off and my oxygen levels crash because my chest becomes paralyzed along with the rest of my body at random. You try to scream help me but you can't because your face/mouth is also frozen along with the rest of you...NOTHING will move. You pray the nurses know what they are doing and they are not going to let you die, but in the back of your head you are thinking my God this is it...I am dying. Tonight I am going to die. I am never going to see my husband and children again...and these nurses are just standing here yelling at me to "stay with them" and "try and calm down" I don't want to calm down....can't they see I am fighting not to slip away? I have to try and move...I have to try and talk to them....I have to tell them that my throat and chest and face burn so bad....like I am on fire. And what is that metallic taste in my mouth? Uggggh that is soo gross! I have to tell them all these things to them can fix me, but I can't I can't tell them anything....I can't even pick my head up off the bed or blink my burning eyes.....Then it is over. Just like that. I am ecstatic to still be alive and frightened beyond belief as to what just happened. How can this be the MS? Can that really do this to me?? I am trying hard to comprehend that it is....after all every test under the sun to rule out anything else it could have been was negative, and yes all of these things are listed as MS symptoms, but THIS SEVERE? This absolutely devastating and terrafying? How can this be....And wouldn't you know it in the last 24 hours 9 more attacks. Once while I was home alone with Amanda woke up on the floor in the kitchen from....I stopped breathing long enough to pass out. How can I live my life like this? Please make it stop. Enough is enough. I can't take anymore.

Anyways this has been my last week.....
Since Sunday I have had.... 18 tubes of blood taken, 6 IV's started, 4 EKG's a head CT, and Surgery to remove a swollen and infected gallbladder that was blocked with stones that started to infect my pancreas.

One ambulance ride to Douglas General Hospital on Sunday, then was admitted to that same hospital on Wednesday had to have semi-emergency surgery on Thursday (oh, did mention that while I was there Wed. night I stopped breathing...had some sort of super MS Flair that TOTALLY PARALYZED me...) Came home from the hospital yesterday and today was sent to Piedmont hospital by my MS doctor because once again (ok NINE times since 2am) I have had flair ups with my MS to the point of not either being unable to move (being paralyzed) or not being able to see, breathe, or speak. I had one head CT (to make sure I didn't have a stroke (which thank god I didn't) one 30 min. long steroid "spinal trauma" infusion pack and a prescription to increase my anti-seizure medication by 50mg a day and I am back home yet again.
I will follow up in the MS Clinic Monday morning.

uuuuuummmmm aside from a miracle to be able to pay for all of this I could use some healing vibes. I have never in my entire life been so scared. In fact as I sit here I am wondering how in the world I am going to bring myself to go to bed....I have to tell you I am scared to death that I will stop breathing in my sleep or I will wake up paralyzed....

Lets give Piedmont Hospital a try....

2006-12-08T18:15:00.000-05:00

Friday

12/8

ok NINE times since 2am I have had flair ups with my MS to the point of not either being able to move (being paralyzed) or not being able to see, breathe, or speak. The on call doctor for the MS Center sent me to Piedmont Hospital. I had one head CT (to make sure I didn't have a stroke (which I was not thinking I did but they wanted to be safe…what ever) one 30 min. long steroid "spinal trauma" infusion pack and a prescription to increase my anti-seizure medication by 50mg a day. At 9:30pm on the way to my parents house to pick the kids up the nasty taste returned to my mouth and the tingles to my face. Not as bad, but yes it is there. I would LOVE to know what the hell is going on. **yup—same headache**

So it takes 911 four mins to get to my house!

2006-12-04T11:22:00.000-05:00

Monday, December 04, 2006

So it takes 911 four mins to get to my house!
Current mood: aggravated

One more MS flair up...one more night in the hospital...
This one was bad enough Peter called 911 and I was taken by ambulance.
I hate this...HATE IT!

My Demyelination

25 Fascinating Love Facts

So it has been awhile....

No more Chemo for now....

Life Goes On

Just the way it is

Put on a happy face

Lonely & Mad

Popcorn Anyone?

Very much in need of some TLC

Happy Anniversary To US!

So very tired......a *rant*

Wired for Sound?

Electroencephalogram (EEG)

Electroencephalogram (EEG)

Why It Is Done

How It Is Done

How It Feels

Obituary/New York

Heaven has a new Angel

On the Edge of Death

My heart is heavy

The MS monster and Christmas...

Fight of the blah....

A miracle

For the love of friends

Small bites of good fortune

And it looks GOOD!

Dude wanna see my drugs?

Avonex Serious Side Effects

Plaquenil tablets 200 MG (1 twice a day)

Why is Plaquenil prescribed? Immunosuppresive drugs are used in organ transplantation and autoimmune disorders. By suppressing lymphocytic immune responses, many disease states can be arrested.

Plaquenil is prescribed for the prevention and treatment of certain forms of malaria.

What side effects may occur?

Major

Minor

Baclofen (20 MG 1 four times a day)

Incidence Less Than 1 in 100

Acetaminophen and Oxycodone

Why is this medication prescribed?

SIDE EFFECTS

DRUG ABUSE AND DEPENDENCE

Phenergan 25 MG (PRN)

promethazine (oral) (pro METH a zeen)

What is Phenergan?

What are the possible side effects of Phenergan?

Amitiza (1 twice a day)

What is Amitiza?

What is the most important information I should know about Amitiza?

What are the possible side effects of Amitiza?

Singulair 10 MG (1 at bedtime)

Why is Singulair prescribed?

Most important fact about Singulair

How should you take Singulair?

What side effects may occur?

Effectiveness

Common side effects

Less common to rare side-effects

Severe discontinuation (withdrawal) syndrome

INDICATIONS AND USAGE

Rozerem (bedtime PRN)

Rozerem is used for:

How to use Rozerem :

Important safety information:

Possible side effects of Rozerem :

Valium 5 MG (1 at bedtime every night)Generic Name: diazepam

INDICATIONS:

PRECAUTIONS:

DVERSE REACTIONS:

DRUG ABUSE AND DEPENDENCE:

On a Sinking Ship

I'm invisible

Multiple Sclerosis and Sexuality

Multiple Sclerosis and Sexuality

The following information is abbreviated and referenced from MSIF - Sexual Changes in MS and from the National MS Society - MS and Intimacy.

Me and Multiple sources

Doctor explores physical causes of fatigue

Coping with Fatigue in MS Takes Understanding and Planning

Bladder Issues in MS

Bladder Issues in MS

So very tired......a rant

Valium 5 MG (1 at bedtime every night)
Generic Name: diazepam