My MS is progressing but at least I am not saying "My cancer has returned". Yes, I'm a melanoma survivor and it made Copaxone injections impossible in the lower half of my arm because I have no fat in that area. It is flat like Kansas only covered with skin.
There are times I don't mind MS moving along because so much is going on at home. Alex is job-hunting in a dismal climate, the daschie seems to be developing some kind of problem but I don't know what - there is no money for vet bills. And there's this:
Nicole's 38th birthday is coming up - November 7th except she is still 34. A hard day to celebrate. The Worldwide Candlelight Memorial is in December. So are all the holidays, including my birthday and she won't be there for it. It is a struggle, this... conversion of happy memories of Nicole to something more compartmentalized. I can't cry all day, you know. When I am strong I open the happy box of memories, otherwise they need a safe place to hide. For now. I need to focus on the home front and get through the "oh so happy season..."
MS: my left leg tends to vanish (usually when I need it which is all the time) and the power to shock and awe has returned. (electrocution) I need a forearm crutch I think. Saying "I think" probably means yes. I want a very sleek white one. Does one exist or are they all clunky and grey? I probably couldn't afford the sleek ones anyway. Back to MS...
Electric shocks surge through my abdomen and travel down my leg. Electrocutions are torture whether done biologically or mechanically. A daily event, now. Not the same as a thunderbolt... my first one was in San Antonio and it was directly from hell.
Electric shocks and thunderbolts are different. I can't explain but if you've had both, you'll know. I would rather deal major MS electrocutions than endure a second thunderbolt even though it last a split second. I was asleep when it happened and it took me a long time to feel normal. I did wonder if I was struck by dry lightening!
My Neuro at that time believed me. It's important when a Neuro believes you.
My kidneys are being contentious - an old symptom returns to visit for a few hours at a time...approximately 28 years ago I was diagnosed with diabetics insipidus but before I could get pick up my vasopressin, it went away very mysteriously. I had it for three long months...now it seems to visit for a few hours at a time. Intense thirst followed by an inability to retain the water drank while showing signs of dehydration....for several hours.
My neurologist will be intrigued.... wah, wah, can I make a case for wanting a water retaining medication? One that increases blood pressure too? That doesn't cause renal damage?
A word to the wise, if you have MS never take the Romberg test in the shower. I had a minor fender bender - I was washing my hair, closed my eyes and boom, bam, I sort of fell out of the shower without my knowledge... the corner of the shower prevented me from injuring myself while the door swung wide open. My first EPIC FAIL of the Romberg test.
Remember I broke my toe last Thanksgiving twice? It seems to have injured my entire leg- it throbs constantly. My little piggy toe should be singing wee wee wee all the way home... it has not arrived home yet. Time to get it checked out. Again.
I could go on and on...but I'm tired too. =p
15 comments:
I hang on or sit down whilst in the shower. If I didn't, my accident would be worse than yours. As for the Romberg test, I take none without something nearby to grab on to quickly. I guess that means I know ahead of time that the result of the test will not be good.
Hello Sherry!! Though you may not feel up to speed, or, that this post was not full of positivity and inspiration, for me it is.
This has been one of the "less than" less-than-good weeks for me, and it still has a few more days to go!!
I don't do my "therapy through comment", but reading about your DEALING and not necessarily complaining without a solution (which is better known as whining), and still competing with living.
I like Judy's name... and that is what I wish for you... that peace is with you and EVERYONE that you love..!
Funny (but not ha-ha)about that Romberg! If I close my eyes in the shower, I'll go over. If I'm washing my hair, I have to close my eyes or the shampoo will burn them. Solution: no more tears baby shampoo!
Peace,
Muff
Ya, no eye closing in the shower. I actually kneel in the shower while washing my hair.
I think and I am 81 and have not had nearly as bad a symptoms as mentioned here with my chronic fatigue bouts. I am in one now, but have always thought if I was going to have an ailment this was one of the better ones to have. It incapacitates you probably in order to force you to rest, but not unduly. I am learning more about MS and find I am greatly sympathetic to the sufferers of some of these symptoms. MS definitely seems like one of the worst conditions to have. Especially as it progresses. I am glad MS sufferers have each other because it seems like only a fellow sufferer could really relate. Although MS has been documented I am doctors are not always aware of what can go on here, so a good doctor must be greatly appreciated. I am resigned to not having doctors who under stand chronic fatigue, I don't even know how much one case might resemble another. I have learned enough about it to handle it myself without the help of doctors and so far have managed to recover. But when I have had a bad bout I have gone to emergency just to give up my care for a few hours so I could rest. I would not have to keep myself from dying. It is only if I am caught up in enough stress do I fear dying from it, then it feels like it would be fast.
I constantly have bruises across my upper arms because door jambs attack me. Today I had two falls. Epic failure of a day. Once I landed on my butt, and the next time - not long after I had got myself up from the first, I went full length frontwards. Some wonderful bruises I expect but I don't think I broke anything. Though I did break (we think) my middle toe last week. Joy and bliss. And yes, the electocution is such fun. Cruel and unusual punishment.
Stay as well as you can. And yes, holiday seasons without one of the people who made it worth celebrating are very, very hard. Hugs
I don't know anything about what you could take so you can "hold your water," all the meds for that didn't work for me which is why I got the supra-pubic cath put in. It works well. I'm sorry about your health problems. They seem to be ganging up on you.
Here is a place that sells pretty colored crutches - but no white ones. Maybe because they'd be mistaken for white canes for the blind??? Don't know. You'll have to Google farther than I did. There were other places that sold them (the standard variety grey ones) pretty cheap, though. Like Walgreen's. Here's the link:
http://www.qualitymedicalinc.com/forearm_crutches.htm?gclid=CIacy5vGjLMCFc5_QgodIQUA8Q
Actually, looking at it you could probably get by with just the first line - to .com.
If I had all the power in the world, I would make it so that November 7 would remind you only of the joys of your daughter's existence, and none of the pain of her departure.
Unfortunately I don't have that power. But I can pray that some day she can again bring you joy without tears.
I didn't realize you also suffered from melanoma. Your ability to count your blessings as the MS progresses is truly a sign of courage and strength.
I learned my lesson with the shower. No more standing with my eyes closed.
Gerry, my cousin has CFS and I'm very familiar with the symptoms. Another invisible disease and hard to explain.
EC, the electrocution thing is very painful. I am sorry you have it too. I hold myself tight when the jolts turn on. Coughing makes it worse.
X. Dell, thank you. I am trying to get to the point where memories are pleasant - sometimes they are and that's when I enjoy them. I have to compartmentalize them right now because so many people are gone. I can't think of family events yet - only one on one's if that makes sense. Still, that is progress. =)
My EX's Uncle was diagnosed with melanoma the same week I was. He and I kept in close email contact during this time - He was very positive, optimistic but unfortunately he lost his battle.
I know I am lucky. Mine was caught early.
Sherry, wishing you were feeling better. Those jolts sound really unpleasant.
I remember a neuro appointment decades ago when Patti's neuro was anal retentive that she could not only stand but walk and insisted on her trying some variation of your test with his assistance. ... Moments later I had to assist them both off the floor as Patti collapsed on top of him.
Caregivingly Yours, Patrick
~ ~ ~ ~ ~ proprioception!
THANK YOU,
I came across proprioception when I googled "Romberg"....
.
I have tried so many times to explain how I... uh?... lacked the understanding of
where I was/how big I was/how I was moving
in relation to...
well, in relation to reality?
Not that a word like this (if I could ever remember it, or pronounce it, or read the "pronunciation clues" w/o sobbing) would be any help explaining to my few friends how I "got that" bruise or lump.
Sigh.
.
I used to 'follow' your blog, but now I may have too many gmail accounts? Anyway, thanks again for all you give!
Webster, didn't think about the blind using white. =)
Jenny, it is unpleasant. My Neuro PA increased one of my meds to help...we'll see.
Patrick, I know? Some neuros are like that. Sheesh...reminds me of a doctor I had once - when he looked in my ears he said "your ears look fine, why are you deaf?" duhh..... as if they were supposed to be physically deformed LOL.
imascatteredbrain, yes... proprioception. a big problem for me and for many MS'ers. position in space...can't figure it out.
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