The Mindset...and other MS Blogs

My mindset is better today. No point in being frustrated. Besides, when I allow the stress to get to me I'm the one who pays for it. Literally. Like today. I woke up, did my treatments, wheeled to the recliner then slept from 9 to 3. Not counting phone interruptions which were blessedly short and I just went right back to sleep. Called TWF (Train Wreck Fatigue), brought on by allowing myself to get upset over events in which I have no control over. (Like the correspondence course RN's for the insurance company who denied my MS claim). One of the hardest things for ME personally to deal with is the fact that I can't allow myself to get the teeniest upset over ANYTHING. If I do, I pay for it. Which means I have to keep my emotions under such control I almost have to be a robot. For me and my personality, not possible. I have the type of personality that it takes A LOT for me to have an emotional meltdown. When I do, it's done and over. In the old days BFMS (Before MS), it was easy. I'd get angry, express it and it was over and done. Now MS kicks my kiester if I get stressed, let alone emotionally upset. MS is starting to get entirely too much control over my life. I don't like it, but I honestly don't know how to get control back. If it's even possible. I follow several other MS blogs. Each person's journey with MS is so different. No wonder some of us went years before we got the correct diagnosis. ALL of the other bloggers are pretty darn brave. Some are undergoing treatments that I won't do. They all seem to have a great sense of humor and while they too have bad days they seem to manage to keep it all balanced. Something that I struggle with. Of course, each of us have been affected differently by the disease. Of the blogs I follow, I believe I'm the only one in a chair. I really enjoy following their blogs. The blog world become a huge support group. It's actually pretty amazing. So, I got through yet another day. Another step forward on the journey. I just wish the journey wasn't so challenging right now.

Who did I....

PISS OFF?!?! It's not enough to be deaf, be nearly blind without glasses, have MS (not to mention NOT being a perfect size 10) and recently ending up in a chair. No, now I have to fight with the insurance adjuster/UM committee who decided in their infinite wisdom to deny my MS claim. Apparently, per them, MS is NOT exacerbated by extreme stress, or any stress for that matter. HELLO??! Have any of their obviously "I obtained my RN by correspondence course" UM reviewers read ANY of the MS data?? Lets say together shall we, "The first things that will cause an MS exacerbation are extreme or extreme stress (physical or emotional). Oh, and it gets better. NONE of the medical information submitted by MY physicians count. Only the neurologist (NON-MS Specialist) they sent me to has any input. So, of course I get an automatic appeal. During this appeal I have a choice of three Neurologists of THEIR choosing. When I asked the question, "ARE THEY MS SPECIALISTS".....guess what the answer was?! "They are Neurologists". (That's like sending a cardiologist to perform open heart surgery. He may know a heck of a lot about the heart, but when it's broken he can't fix it)! Do they seriously not know the difference, or do they think I'm just going to give up and cave in? I DIDN'T get my RN through a correspondence course AND I'm a MSer, so I know the difference. I also happen to be stubborn as H*^$ so caving in isn't an option either. Crying might be, but caving isn't. My poor husband. I don't think I've ever seen a man so glad to go away for a few days. Too much stress around here since Friday. I may be able to see the bright side of this tomorrow (not likely), but right now. I'm plain 'ol pissed off.

Rebif kicked my

kiester. I inject on Thursday's, Saturday's and Tuesdays. Usually the massive amounts of IBU I take before, at, and after injecting keeps the majority of the side effects at bay. (Fever, body aches. Basic flu like symptoms). Well not today. I was feverish all night and OHHH does my entire body hurt today. I feel like the MS train hit me, ran all 50 cars and the caboose over me for good measure! I would do just about anything to get off the Rebif and not take ANY shot. In reality, I wouldn't dare attempt it. MS has been attacking my body at a terrible rate this summer ON the meds. I wouldn't even want to imagine what state I'd be in without the shot! The Neurontin seems to be doing a fairly good job of keeping the really severe muscle spasms at bay, although they continue to occur intermittently. (Could also be the machine helping). I'm just in SO much pain today. NOT a good day. Usually, as I discuss in the blog, I really try to "mind over matter" bad days. Not today. Today I'm giving into it. I'm going to run my pain protocol as much as I can today and hope to get some relief (I already ran it this morning and got minimal relief, which IS better than nothing). It's a nice cool, crisp fall day which is the perfect excuse to just stay in, hang out on the recliner and nap. Works for me!

I am not a monster......

said Quasimodo. It's exactly what I felt like saying today at lunch. Today Mark took me out for lunch. I can NOT believe how rude people are. Yes, it's human nature to glance at the person in the wheelchair, but STARE??? I'm not talking kids here either. I'm talking about GROWNUP'S in their 30's and older. Wait a minute...perhaps I have the wrong perspective....perhaps they were staring because the men could not believe how totally HOT I am and the women were staring because they wished they were HALF as hot as I am. Yeah, that's it! Now I feel better. You see, it really IS all about perspective!!!!

TWF and staying focused

One of the most frustrating aspects of MS for me is the Train Wreck Fatigue. It doesn't take much to completely knock me on my kiester for a day or two. I wouldn't have thought anything I did yesterday was too much, but apparently it was. It seems it takes less and less physical exertion to put me completely down for a day. The only physical activity I did yesterday was wheel myself around the house (OK, I admit THAT is physical activity) and fight to get the chair in and out of the car for the support group meeting last night. I got up at 6 this morning, ran my treatments. Dozed while I ran them then took a 3 hour nap when they were finished. It's only 2:30 in the afternoon, yet I could easily go to bed for the day. THAT frustrates me. While I strive to concentrate on what I CAN do, I miss the things I used to do and took for granted. Things like spending the day window shopping in the mall. No way I could do that now. Even with someone pushing the chair I simply don't have the energy anymore. I am still very hopefully I will be able to return to work. I NEED to work on a psychological level. Although I know returning to work is going to be a battle on two fronts. My fatigue level with activity and if my employer will allow me back in a chair. Time will tell. Meanwhile it's my job to do MY part. Keeping focused, doing my treatments, taking my meds and not allowing myself to feel sorry for ME. I focus on the fact that things can ALWAYS be worse. I couldn't imagine trying to deal with MS without my husband, family, friends and support group. Not to mention my MD.

Who are we?

While our attention often is focused on the momentous events in our lives; weddings, the birth a child, a new job, an illness. It is often the moments that are so fleeting, we don't even see them, that really shape and define who we are. The "ME" that is our core being. The ME that won't quit, that doesn't give up. The ME that loves profoundly and hurts just as deeply. The ME that often simply can't comprehend WHY things happen. The ME that sometimes wants to curl up in a tight ball to protect myself against the unfairness that has come my way and never get up again. It's the same ME that won't allow that to happen. (Of course, family, friends and a good antidepressant helps with that). I was reminded last night just how important a good support network really is. I'm talking about a support network beyond family and friends. A support network of folks who REALLY "get it". Who understand exactly where your at, because they have been there or ARE there too. The sharing of a common experience, especially a challenging one, not only is a thing of bonding but a reminder to each other that our "ME's" are no less than they were before the canes, walkers and wheelchairs. That we are NOT defined by the appliances we are forced to use, but by the strength, compassion, support, grace and love we give others, especially when we ourselves are struggling. It's the personal character we developed over our lives that forces us to continue on, no matter how hard things get. One of the most difficult challenges isn't using a cane, walker or being in a chair. The most challenging issue is NOT allowing myself to get caught up in "I can't", but to focus on "I can" and move to "I WILL". "I WILL TRY" may lead to what I perceive is a failure, but is it a failure? I don't think so. The failure would have been in NOT trying. Giving up and staying in "I can't". That's where my new found support outside of my family and friends come in. They will simply not allow me to be stuck in "I can't" because they won't allow THEMSELVES to be stuck there either. I am deeply appreciative of the Blessing God gave me in the form of a support group.