multiply sclerosed

An Angry Rant (not for kids or sensitive readers) written 5/25/12.


{June 23, 2012}   A really good day

Yesterday I had a really good day. It was a top drawer of my “new normal”. I felt great. I had very limited pain, aside from a twisted ankle, my right hand as back as close to completely as I could have ever hoped for. Zaps, none. My left arm and hand were, just ok, but I expect that. I wasnt tired, I wasnt grumpy, I was on my game. I had fun  shopping with my family, I was able to keep up and somewhat ahead at work. My mind and mouth were operating on the same plane for a change. I was back, and so happy for it. The only set back was an unfortunate encounter with butterfinger bits in my graham cracker crumbs which completely destroyed my fro-yo. Stupid peanut allergy. But with a quick thinking by  Michele-y and a quicker  trip up to the pharmacy, disaster was averted. So Golden Spoon is on my shit list right now.

So far today I feel good too. I hope this a long string a good days. I know I am not going to push my luck though.  Proper sleep, no medication slacking, eat well, lots of fluids. Lets see how it goes! I am hopeful, yet cautiously so. I know that I can get knocked on my patoot with no warning, but I can’t let that stop me. I can’t live in fear of what might happen. I have to Carpe Diem and run with the good. Because, you know, it is good, it’s all good.

Oh yes, I would be a bad MS advocate if I didn’t do this….

A big shout out to Jack Osbourne, keep strong, listen to your doctors, take care of your body! We can live with this, have full and pretty normal lives. Just don’t quit, don’t stop doing what you love to do, keep moving excercise your body and your brain. Don’t let in turn to oatmeal, because it will. Feel your feelings. Accept that this disease sucks, we can’t cure it, but damn it we can stall it, we can put it in its place. But accepting that now it has a place in our worlds is crucial. Let people help you but not coddle you. You can do this. We all can.

Today I am sad. Lonely for my sister. You see, she lives on the other side of the country and we can’t be together as often as either of us would like. Six years ago, my hubby and I moved our two small daughters from east to west, in hopes of making a clean break and a new start.

The most profound casuality of this move was the separation of my sister and I. You see, we have always been each other’s rock, my first and bestest bestie, my first and greatest nemesis, mortal enemy, my angel, my sounding board, my conscience, my ass-kicker. The one person whose opinion, advice and love have always been the very most important to me.  She is my little sister, but she got the balls, the brains, the common sense. She was able to take her big sister and help her through  trying and destructive events. She never left me alone, no matter how many times I was gone, how many times I took off, how many bad choices I made, how much I drank, smoked or money I spent. She always helped me and taught me to do better. I think I have.

I miss her everyday.  I tell my girls everyday, how lucky thy are to have each other, I want them to love each other as much as my sister and I do.  I think they will. But, there are 4 lil girlies who are missing out on each other (my 2 her 1 and our BABY sister) and a crazy cute lil nephew who wont know the torment of being surrounded by girls.  I want to be with them, I want to know my littlest sister, I want to have the chance to be an Auntie. I want my kids to have cousins, close ones, like we had growing up. A big extended family, that’s what I have always wanted.

But if I can’t have these things, then please just send me my sister. Have her appear when I need her. I have chronic disease, everyday is a challenge, my husband is so good to me, I never want for care or love,my daughters are doting and supportive and so sweet. I have everything I need. Except, I have one huge gaping hole in my heart that can only be filled by the love of my sister.

{June 15, 2012}   EMG Update

Yesterday, I had the second half of my EMG. I had my arms and hands tested. It wasnt nearly as painful. On the other hand it wasnt nearly as entertaining. No comedic anything actually, all business. No nerve damage to my arms and hands. Meaning all the symptoms that are lingering (the numbness tingling, pressure and all around uselessness of my arms and hands) are related solely to the MS. Good? I dont’ know. I follow up again in a week and a half. “Q” said he was going to review my MRIs, my neck  in particular. So what does that mean?  More meds? Perhaps it’s not Remitting Relaspsing MS but a more progressive type. I have no clue.  I guess instead of speculating, this one time, I had better just wait and see what happens. My fatalistic side is rearing her little head now. So to combat little miss poopy pants… bring out the cool whip! Just don’t tell the cricket 😉

{June 7, 2012}   The Stabbing

I just had an EMG (Electromyography) and let me tell you it SUCKED HUGE. We are checking for nerve damage in my arm and legs, this past Tuesday we did legs. For the record I am a tough chick, I can handle pain fairly well with breathing and concentration. Not so much this time. The first part of the test a very nice lady with electrodes and a computer accessed each little nerve bundle on mu legs and zapped them to check their responsiveness. I laughed it off at first, thinking ok I got this, the zaps are over as soon as they started. Well as the test went on it became less funny. The zaps wore me out.

I think that is a good time to bring up my Mommy-in-law,  I love her so much she is a pillar of strength for me and my family. She came with me. God love her, before we started, she said to me “don’t worry honey, it doesn’t hurt”. WELL!! OOOH!! I swear on all things holy if I had something to throw at her… When the zap portion of the test was over, I sprang  up from the exam table pointed at her and said “YOU!!!” She was hiding behind her iPad trying to not make eye contact with a furious and painful MS patient. To think, I was going to make her dinner!!!

Enter “Q”, from here on out this is how we will be referring to my neurologist, for I am convinced he is an evil supervillian, hell bent on world domination one EMG at a time. I really do like him, don’t get me wrong, just right now, we are not friends. So “Q” tells me this part of the exam is quick, he is just going to place a thin needle into my leg to test the nerves directly. Um, okay. The first few spots were ok, painful but tolerable. I forgot to mention that when the needle was in he also ran  current through it. Yes, bloggy buddies, direct nervous electrocution.

Here follows the first hand account of  “The Stabbing”. I was not aware that it was possible to be in such intense and unbearable pain. “Q” inserted the needle into my calf, started the electro-torture and triggered the mother of all leg cramps. I screamed out in pain, was in tears, and had to lie down at the sight of my own blood. It shot out of my leg like a fountain. I felt as though somebody was ramming a nail into my leg and twisting. I have never been in such pain, and hope never to feel it again.  “Q” got his reading, but asked if I could tolerate another go in the calf.  For the first time, I had to say to a doctor “no” I am unable to continue. I have not been able to finish up an exam due to intolerance of pain. He said it was fine and that he had enough information. So I caught my breath, got my game face back on, and started making jokes. I told “Q” that I typically like him but right now, not so much. He assured that next week when we do my hands, it is easier and not nearly as painful. I hope so.

So as I write this I can still feel a remenant of the pain from The Stabbing, I have been having leg cramps and was seriously considering staying home from work today. Not this soldier. I shall press on, with a few painful winces.

If you were worried about my poor starved Mommy-in-Law, I fed her.

et cetera
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