Nov 092012

-My new neurologist is good but he isn’t my beloved Dr. Cain. He was very thorough with his examination of me. I had to give him a complete history… that was tough because so much of it escapes me now. I told him he needs to just check out this space & read my history… he didn’t even crack a smile. Pft.

-My blood pressure is scary high. That’s new. Up until now my BP generally ran around 90-100/55-70… not anymore. It was 165/94 today. Holy shit. So I’m on Verapamil full time now. I have a script already because I take it in the cold months to help with the pain caused by Raynaud’s. That pain is something else… I liken it to TN of the hands & feet. Excrutiating. I have the secondary form of Raynaud’s… thank you MS. I have to check my hands & feet often because I can’t tell if they’re cold or not, and if left unchecked some really bad stuff could happen. Funny that I can feel the hellacious pain but not the cold/hot sensation. (Coach is pretty good at letting me know when they are cold… the squealing that erupts from his mouth is usually a good indication that my feet are cold) Anyway, so in addition to the new neurologist, he has referred me to another doc that he works closely with to monitor the medical side of things. He also gave the name of the hospital I should be whisked away to should the need arise.

-My weight is out of freakin control. I am no longer voluptuous or rubenesque… I’m simply a tub o’lard with a face. Up, down, up, down… without changing a thing. I’m still working on the diet and I have lost 7 pounds, regained 4… that makes no sense to me. I’m incredibly frustrated. I know I need to lose weight. I WANT to lose weight. But it just doesn’t work. Dammit. I’m not giving up on the diet thing though… I will plug away at it and see what happens. Maybe I’m just destined to be a larger than life gal with lots of me to love? Gosh, I hope not.

-My MS is “stable” in its progression. I’m not sure if that means the rate at which I’m progressing is stable or if the level of progression is stable … it’s all so confusing. I’ve progressed most especially in the area of gait/balance, and of course in the thinking department (Adventures of the Lost Tub O’Lard)  I can no longer walk on my toes… I don’t know how long it’s been that way because I never really walk on my toes so I guess my future as a prima ballerina is off the table now. But today, had the doc & his nurse not been holding on to me I would’ve done the classic face plant in his exam room. I can’t walk on the heels either. The heel/toe thing is out of the question completely these days. He did a vibration test thing to measure sensitivity… right side is decreased. I knew that. I have tremors and shaking but it’s not gotten worse really. Just more frustrating. I had a hard time picking up a paper clip & a penny. I guess that show’s him my dexterity. It’s funny that I don’t notice these things on a day to day basis so much… I mean, I know I have a more difficult time drawing, my handwriting has changed, my grip is less than stellar… but picking up a paper clip? My fingers were in odd positions as I tried to complete the task. ( I did eventually succeed)

-I’m starting up on the Copaxone again. He wants me to do it for 4-6 months again. I was on it for 18 months and have been off it since April. Now there is something to measure against… Sherri on DMD’s and Sherri off DMD’s, then compare to Sherri on DMD’s again. I was willing to do it because I’m curious to see the comparison. The thing about Copaxone is that it doesn’t make me feel any different, unless I consider the burning red blistering whelp that is left behind, or the grey dents in my legs and belly. I told him that I really really want to go on BG12 when it is approved (appears it will be in the summer of ’13) and he agreed. If he doesn’t that would be okay because Dr. Cain will prescribe it for me – the advantages of having two neuros looking after me.

-In the meantime, I am supposed to start taking the Adderall daily again (yuck) as well as the Verapamil daily… and he wants me to try Tylenol PM for my sleep. I don’t sleep more than 2 hours at a time. I have no problem falling asleep but staying asleep is a real issue. I flop around like a ½ dead fish much of the time. I notice that I am most comfortable with my legs tightly crossed at the ankles and my arms wrapped around a pillow and locked at the wrists. I didn’t realize I was doing this until about a week ago. I guess it’s a subconscious way to try and stop the flopping? I also have noticed that I hold my hands most of the time… sort of like a hand wringer but without the wringing part… and when I sit, I have my legs under me and pinned down… when driving, my left leg is crossed under the right at the ankle… I would hate the flopping to cause a sudden and abrupt hitting of the brakes… oh my.

-In January I go back to the neuro again. He doesn’t feel comfortable writing scripts on a first visit unless things are just not tolerable. I’ve been tolerating this long. And I don’t want a bunch of meds anyway. But in January he wants to start me on Gabapentin and something for the sleep disturbance if it’s not better with the Tylenol. I don’t know much of anything about Gabapentin.. time to do a bit o’research. If you are on it or something similar, I would love to hear your experience, tolerance, nasty side effects, good effects, etc… Share the wealth guys!

-I also let him know that I have applied for disability and anxiously await Big Brother’s decision. He said based on my records and what he saw today there shouldn’t be any problem getting approved. Can I get a great big WOOT?! I never ever in my wildest dreams thought I would be in a position to want disability. Ever. It honestly sucks. I miss my job.. I miss the cops.. I miss 9-1-1. I miss the adrenaline rushing through my veins as I do my part to save lives and keep the peace. I cry over it often.

-I have been reading tutorials on post-processing photos and images… all about layers & effects… about a year ago I purchased a course about digital art and photography. Just now I have started digging into what’s there (since the drawing thing isn’t working out so much right now)… fun! I’ve played with layers on a few different images, trying my hand at it…

2 extra layers – Gaussian blur, colorized over black & white, and another layer for contrast/sharpening

I used the same effects on this one but added one more layer of edge definition

And I have no clue what I did on this one… it was black & white when I started. I think I have 3 layers of things going on here

-And now for the big news of the day…. the most disturbing and heart breaking news… and the most embarrassing moment of my lifetime. If you are one of those who do not like the TMI type of news I strongly urge you to stop reading here… now… click the little x up there in the top left corner of your browser… do it! I won’t mind… because this is really going to be TMI on a big level… Keep in mind that this tub o’lard has a lesion on her filter …

-I know I’m much to open & honest here. I know this. I have to be. I promised myself I would. For me and for anyone else who happens to be in the situation… Somehow it helps me to know I’m not the only person on the planet that this has happened to… and by telling on myself, I’m letting someone else know they aren’t alone… I know that doesn’t make much sense unless you are in this blasted boat.

-I had a most unfortunate accident while driving to the doctor’s office this morning. Most unfortunate.

-Seeping… seeping… and not the #1 kind.

-I was wearing a white tennis skirt… the kind that has the little shorts built in – thank goodness for that at least…

-I felt it happening but could do nothing to stop it… nothing. Tears welled up in my eyes as I realized what was happening… as I realized that I didn’t have a change of clothes with me (didn’t think I would need them since I was only going to be gone for about 1 ½ hours)… I will ALWAYS carry extra clothes from this moment forward….

-When I arrived at the office and gave them my name, the receptionist started going through her questions… DL, SS, insurance… I interrupted and asked to use the restroom…

-I had to wash my skirt, wash my ass, and pray that there was no visible stain or odor… I cried… and I cried. I managed to pull myself together before leaving the restroom. The staff didn’t even blink an eye… I’m sure they have seen it all.

-And I was oh so thankful that there is no stain on the outside of the skirt… only on the little shorts underneath.

-Ultimate humiliation. Degrading and all those other words that I can’t seem to conjure up right now. I came home and took the 2nd shower of my day. Hopefully this won’t happen to me again. But somehow I know it will…. dammit.

-Now then… didn’t knowing all of this just brighten your day? Ha!

Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  15 Responses to “Adventures of Ms. Poopy Pants”

  1. And things can and do improve. It’s all stages. But better safe than sorry some days. Thanks for your honesty Sherry, you don’t know how many people your honesty has made feel better and less alone.

  2. I’ve had the worry and a like side affect. I now use the store brand of depends. It’s the way it is, I tell myself, until things improve. The Beast must have its fun.

  3. oh Sherri….you should have just pulled into the local wally world and purchases some sweat pants or something… would have fit right in ……..sounds like a good visit…despite the fact that he wasn’t as good as Dr. Cain……and be sure and pack you up some extra’s to keep in the car…..dammit to hell!

  4. Oh yes. I am so sorry. Relatively recently it is a place I have been myself. Humiliating, awful, vile, part of the damn disease. At least he thinks you will qualify for disability. Not on your wish list – but it would have to help.

  5. Oh Sherri, I’m so sorry that you are going through so much crap, figuratively and literally. Bowel incontinence is one of my most bothersome issues. I have a nasty transverse lesion on my spine between T11 and T12, so everything below that lesion is affected in some way. I have been Ms. Poopy Pants for almost a year now, at least a couple of times a week. Needless to say, I don’t go out much, and when I do…it’s adult diapers all the way…and I never wear white any more!

    On a cheerier note, I like your photos. I haven’t dabbled much with post processing or layers, but I am going to experiment a bit. I like a lot of the effects that I see on other people’s photo blogs.

    • OH Karen… this is the only time so far I’ve had to deal with this, um, issue. I hate to think of you dealing with it so often… ugh! And here I am bitching….

      I can’t afford photoshop & the like so I’ve been using GIMP with the PS tutorials and getting along just fine with it. It’s fun!

  6. Sherri, so sorry about the whole messy bits of MS that you’re dealing with right now. This last year has been quite a doozy for you. I manage my poopy accidents by trying to maintain a level of constipation, and so far, so good with that. But I imagine that, especially in Texas, restricting your water intake is not a good idea. I can’t imagine what it was like in the ladies room that day, trying to clean your clothes. You dodged a bullet there, IMO. I have heard stories… and this one doesn’t even come close to being the worst, but TO YOU – it was the worst, and for that, I’m sorry.

    I hope you will feel better when you get your BP and sleep straightened out. Hope springs eternal.

    • I’m thinking that the diet has contributed to this problem… I’ve eaten more salad in the past 2 weeks that I’m going to sprout weeds from the top of my head at any moment. So much fiber isn’t a good thing I suppose LOL I was lucky that the restroom was readily available and that the waiting room was empty. It could have been so much worse, you are right

  7. These illnesses strip us not just of our ability to function but of dignity. Its heart breaking how many changes of clothes I go through a day.
    Though my heart breaks for you when I read this, I am ‘happy’ to read it because it tells me I’m not by myself and someone else gets this. I can all but see you in the restroom crying and leaning over the sink. And I can surely feel that pain and humiliation. I’m just really sorry.

    I take 600 mg of Gabapentin 3x a day. The first two weeks of side effects were terrible but they left after that. I was anxious, so, so anxious. I questioned if I could see the side effects to their eventual end. I’m happy I stuck it out because after the first two weeks it was worth it for me to take it. I think it helps a lot with the nerve pain.

    My doc will be here on Monday morning so we can discuss my meds. I can’t take 20mg of Baclofen 3x a day and be expected to function. Once you toss in the Gabawhateva and a half mg of Clonapin I’m nothing short of lost. I can’t string two sentences together. I don’t have any sense of anything really. Its what I imagine Dementia to be like. It’s frightening really. I have no idea why I just went into that but……… LOL……. all of that was to say that after 2 weeks the Gaba-what-eva became worth taking.

    I find myself wanting to compromise the losses. Let me keep my eye sight in exchange for being incontinent. Let me keep the use of my hands in exchange for my teeth and hair. I’ll give up any chance of my skin being healthy if I can keep my senses just half of the time. Take dexterity, let me keep control of my muscle functions so I don’t drool. Just let me keep my dignity. I bargain a lot anymore……….

    I am really, really sorry.

    • I do the bargaining thing too. If I can keep my mind, I’ll give up my legs… of course I;m losing a bit of both those things so my bargaining powers seem to be less than stellar LOL

      I’m glad to here the Gabapentin works… you are the second person to tell me it’s good after the first few weeks of side effects. I’m glad I asked because had I started it & felt like poo, well, I would’ve stopped it… I tried the Baclofen route but it relaxed me too much as well… I was like an old wet noodle with no control over anything… eek.

  8. I have IBS and totally understand how you felt. Get your BP under control, that’s some scary high digits for BP.

    • IBS is not fun at all… When I was in high school I had a few bouts of that – or at least that’s what they called it. I remember the instability in my guts and it was awful.

      That BP is horrid! I’m taking my Verapamil as directed…. more pills. I hate pills.

  9. Sorry the neurologist wasn’t all you hoped for. I really think they need a course in just being human. I’m so glad my SIL has a sense of humor, loves his job, and acts so genuinely concerned. He said they actually have to pass a test in this!
    The little matter you mentioned — been there and went through your same feelings. In fact I wrote a whole post back in Oct. of 2010 about it! It’s been a year since I’ve had the problem, but I know it lurks in the shadows of this insidious disease!

    • Just one more reason for me to stay home as much as possible… bleh. I hate to read here that so many others are dealing or have dealt with this. It’s so humiliating!

      I do like my new neuro … he’s a good doctor by all accounts. I WILL loosen him up a bit… he will laugh with me when I need it LOL

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