Thursday, October 30, 2008

Seasons and Blessings

Boy, am I glad I decided to take the chair out yesterday for a test drive. Yesterday was beautiful! Today it's in the upper 60's, cloudy and looks like rain. What a difference a day makes! Just shows how much things can change in just 24 hours. Not only the weather, but our lives and our outlook as well. As in life, I try to choose the positive. I enjoy the cooler temperatures for more than one reason. It's a lot easier on the MS for one and the changing seasons always remind me of the changing seasons of my life. Fall tends to make me introspective, more aware and more thankful for the blessings I have been given. Our lives have so many seasons, not just related to aging. Our careers, have seasons. We watch our children (if we have so been blessed) go through the seasons of their lives as supportive bystanders. Even MS has seasons, although I think MS's seasons are rather random and tend to be brutal. Right now I'm in the "Fall" of my life and perhaps the "Winter" of my career. I think my MS is in Spring (for now), sitting back and giving me a break. A break that hope hope is forever, but I'd be happy to go a year without another exacerbation. Now, I'm waiting. Waiting to see if I regain any of the function MS took from me over the past 6 months. I'm hopeful, optimistic, but not naive. I'm very aware my body couldn't have withstood what it did over the past six months without some residual damage. At least the vision in the right eye came back. It's not 100%, but I'm happy with what I have. It beats the alternative of a blind spot in my field of vision. I'm still trying to walk, and taking "facers" when I do. Hence I spend most of my time in a chair. Either the one with wheels or a recliner. I will still TRY to walk every chance I can. Even if it means my knees look like a 9 year olds. Heck of a way to relive your youth! I intend to enjoy this Season. Not only the weather season, but THIS season of my life. Despite all it's challenges and frustrations, the blessings far outweigh each of them. For that I am so grateful. So, I'll sit in front of the fireplace, quilt across my lap with Maggie curled on top. Valor lying at my feet and focus on the blessings I have.

Wednesday, October 29, 2008

Getting out

Even though Halloween is Friday, we had temperatures in the low 80's here today. Which is amazing. Normally we've had our first snow by now. I took full advantage of the beautiful weather and took the new chair out today. It was great being able to get out ALONE. I love my husbands company, but it was wonderful to get out and pick up a friend for lunch all by myself! I feel like I've received a gift. I have some of my independence back! Of course, figuring out how everything works to break the chair down, get it in the car etc. is going to take a little time. The more I do it, the easier it will be and the faster I'll be able to do it. The chair is light enough that I can sit in the drivers seat, pop the wheels off and put them in the back seat one at a time while holding the frame of the chair up with one hand. Then it's just a matter of taking the arms off, folding the back down and lifting the frame into the passenger seat. I have to learn which order to do all the steps in that is the easiest for me. Just making ONE trip wiped me out. I don't know about everyone else with MS, but mornings, on average, is when I seem to have most of my energy. Every now and then I'll get a burst in the afternoon, but not often. I try to ration out my energy to get it to last as long as I can, because I want to DO as much as I can. Especially with the weather being so nice. I expect to come back from Texas to WINTER here in the mountains, so I want to spent as much time outdoors as I can. The new chair will make doing that a lot easier!

Tuesday, October 28, 2008

All shiny and new......

I got the new chair today. It's an ultra lightweight Quickie GPV. VERY light compared to the monster I've been in for the last 6 weeks. It weighs 21 pounds with the wheels on, compared to the 35 pounds the one I was using. The wheels pop off with literally a push of a button so I can sit, pop the wheels off one at a time while holding the frame up with one hand. The back folds down so you can then just lift the frame into the car. Amazing. It's a beautiful blue (my favorite color). The foot rest bar is solid and at 80 degrees so I can wheel right up to the stove, etc. It also means that I can bend over in the chair and pick things off the floor. The center of gravity is set so it won't tip forward when I lean that far forward. YEAH. More freedom. Means I won't have to ask anyone to pick something up off the floor for me. I have to wait for Mark to come home to really get out in it though. They didn't put the brakes on it (?!?&), and I don't have the hand strength to do it myself. So, I wait until he comes back home to really take it for a drive and make friends with it. I know that this chair will give me a lot more freedom than I've had for awhile. I couldn't lift the other chair to go anywhere alone. So I'm really excited about that. Yet....part of me looks at the chair and sees it as a reflection of personal failure. On a rational level, I know it's not. However, the irrational part of me looks at it, all shiny and new, and sees it as a sign that I have either given up or been defeated by the MS. I'm hoping that the chair will eventually become something I only use periodically, just for energy conservation. As long as I continue to fall on a regular basis I know I'm safer in the chair. So, right now, it is what it is.....

Rally call

The morning after Rebif injection night is always a challenge. Seems that lately it doesn't matter how careful I am to pre-medicate myself a few hours in advance with IBU, and take another when I go to bed, my body always feels like it's been run over by a truck the next morning. Throw in the Neuropathy I've been having and it's enough to make me just want to stay in bed. I don't though. I hoist my petard out of bed, into the chair and start my day. Not wanting to doesn't matter. Failure to live my life isn't an option, no matter how crummy I feel or how hard it is to move. Giving up means giving in. I just won't do that. Focusing on the positive is often a daunting task. Especially when your having a day, like today, that all I REALLY want to focus on is feeling sorry for myself. I have identified a pattern in my behavior with the MS. I will experience an exacerbation, a pseudo-flareup, or a new limitation. I'll get pissed off about it. Which is actually a good the beginning, as it only last so long. (I never could stay made at anyone or anything for long). I think the anger helps keep me going with the "The H*%$ this disease is going to beat me" attitude anger gives me. After a few days the anger dissipates and I'm left with the "I'm throwing a pity party who wants to come?" mindset. (Which is where I am right now). My preference during the "It's my Party" chorus period (OK most of you likely have never heard of that song, so go to and read them), is to live in my bed, surrounded by chocolate and Petrone Silver. The remote by my side (it wouldn't be in my hand because between the chocolate and the shot glass my hands would be full. Leaving me to change channels with my nose). I'd rather have the Silver shot than the Rebif shot. Of course, part of being an adult is being rational. Whether I want to be or not. With that rationality is the realization that all a "Pity party" will do is actually make things worse. Hence, focusing on the positive. Often desperately. Thankfully, when I can't find the positive I have so many wonderful family members and friends that rally around and find it for me. So, troops. As hard as it is for me to's time to rally.

Sunday, October 26, 2008

Home Sweet Home

Arrived back home this afternoon after a quick trip. OK, it really WASN'T quick. It takes 5 hours each way. Of course this is only if you DON'T have a freaking flat tire and have to stop every 30 miles or so because you have a passenger (ME) that either has to pee or is having yet another muscle spasm in her left leg or glut (ass for those of you who never took A&P) and has to move. But I digress. Anyway we went up North to help Marks dad celebrate his 80th birthday and his eldest niece her baby shower. We had a WONDERFUL time. The shower was fun and he has a great family, so it's always nice to spend time with them. We left here Friday at noon and returned today at 2. Needless to stay it was a VERY quick trip. One that totally kicked my butt. Which in turn totally pisses me off. Just a short year ago, I would have returned home, unpacked, started the laundry, went grocery shopping, cooked dinner and STILL had energy left over. Now, I slept the last part of the drive home and still arrived exhausted. Some company I am for the drive. Then, poor Mark has to push my chair in because I don't have the energy to roll myself in. I then plop myself in a recliner, guilt ridden while he unloads the car and goes to the store. Someone asked me this weekend how I "feel". Not counting the pain, I honestly "feel" great. It's the fatigue that just kicks my behind. Pain, while frustrating and let's face it, painful, is manageable. You take a pill, rub the muscles, cry and pray A LOT. However, you get through it. The fatigue, I just can't get a handle on. I was reading another blog today of someone who is also fighting fatigue and feels like she's "married" to her couch. Boy, can I relate. For me, it's not a couch, it's a recliner. I am horrified by how little activity it takes to put me in the recliner. Of course, It's also safer for me to be there. My left knee looks like it belongs to an 8 year old boy from all the falling I've done lately. Which also pisses me off. MY MS generally chooses to mess with me by taking away my energy, messing with my balance and making my fine motor skills "not so fine". Yet, it leaves me FEELING "normal". I feel like I should be able to do everything I did before. Yet, inevitably when I try I either end up on the floor face down or in the recliner butt down because my day's allotted energy allowance was drained just getting out of bed and dressed in the morning. Of course, trying to find the humor in the situation is just what I try to I'm searching.....digging REALLY deep. Nope, not a chuckle to be found let alone a really belly busting guffaw. So, I think for this evening I'll just let myself be pissed off. Yep....feels about right!

Wednesday, October 22, 2008

And the band plays on......

off key. That seems to be my life with MS. My favorite time of the day begins and ends about 10 seconds befoAdd Imagere full consciousness kicks in. It's those brief nanoseconds when I hover between sleep and wakefulness. During that brief period of time I don't have MS, I'm not thinking about MS and my brain isn't awake enough yet to remind me of my limitations. Then, I try to roll over and the band begins playing off key. Rather like 6th grade band. Remember the 6th grade band?They sure try hard. 200% effort is given. They just aren't quite there yet. Just like my central nervous system. The brain sure tries to get the signal where they need to be, but everything is off key. I wake up each day like everyone else. Not knowing what the day may bring. Yet while others worry about what bill may come in the mail, the grind of yet another day at the office or the quote the auto repair shop will be giving them, their band plays in perfect tune. Rather like the Philharmonic. My day begins with the same mental worries. Then things like trying not to fall and getting dressed without help become my focus. Once I'm dressed, (independently and without falling I hope), and in the chair my life, for the most part, IS like everyone else's. Same worries, same frustrations, same joys. And the band plays on.......

Monday, October 20, 2008

Texas Bound...again

We're heading back to Texas so my machine can be readjusted for me. Going for a longer period of time this time around. (Hurricane Ike interfered last time). I'm looking forward to the trip. I got SO much pain relief from the machine and was able to sleep. I know I'll get that relief again. My body just got used to the beta waves (which is a GOOD thing) and is ready for the next level. Mark will be going for the first few days then a girlfriend is flying out for the rest of the trip. I can't wait to spend the time with her. Brings back memories of our San Francisco "girl" trip. The zaniest things happen to us. We're like Lucy and...well I was going to say Ethel, but we're more like Lucy and Lucy. I will have my new ultralight custom wheelchair by then as well, which will make it much easier for me to get around in. I coordinated our trip so I won't have to miss next months MS support group meeting. I think the meeting is too important to miss if it can be avoided. Anyway, hubby leaves again this afternoon and I want to spend some time with him. So, I'll blog at you later.

Sunday, October 19, 2008

And the nominee's are:

Here are the instructions I received with my award:

* Put the logo on your blog or post.* Nominate at least 10 blogs which show great Attitude and/or Gratitude!
* Be sure to link to your nominees within your post.
* Let them know that they have received this award by commenting on their blog.
* Share the love and link to this post (Lisa) and to the person from whom you received your award. MS. Me

The following are my 5 picks of bloggers that showgreat Attitude and/or Gratitude. It was hard to limit it! However, everyone else I would have nominated has already BEEN nominated with the exception of the following five. So, here are my choices. There are so many great MS related blogs out there! I get so much from each one of them.

First Blog Award........

I've received my first Blog Award.....thank you Ms. Me! This is passed on from previous Bloggers to other Bloggers. I can't wait to pass it on! I'll nominate my 10 choices tomorrow. (Although they are are so great I'm sure they have already received theirs)!

Wheelchairs, perks and lemonade

I never thought I'd realize that being in a wheelchair brings "perks", but yup it does. Mark (my wonderful hubby) took me clothes shopping today. I needed an outfit for a birthday celebration this weekend and well as Thanksgiving. All my really "nice clothes" are either more business attire or require hose and heels. (Think dresses and skirts). I didn't want to do "business" for "fun" outings and the holidays, nor do I really want to be sitting in a chair in a dress or skirt. (I'm self conscious enough being in the chair without hearing my mothers voice whispering in my head saying "sit like a lady". Sorry mom, the days of crossing my legs are gone). Plus, socks are a whole lot more comfy than hose! So, the perk of being in the chair this week......I can find TONS of excuses not to have to wear hose and heels! Yeehaw! So, I got my shopping done pretty quickly. Which spared my husband from bleeding from the eyes and ears and being completely traumatized by a prolonged shopping experience. Hey, another perk...hubby HAS to go shopping with me to hold the bags! Gee, I had no idea there were so many benefits to being in a chair. I've decided to try and find a perk a week....and I've already named two! I'm on a roll here. (Which is probably a sign that I'm actually dwelling too much on being IN the chair). Did I mention we ordered my custom chair Friday? I should have in within the next few weeks. It will weigh a good 15 pounds less than the chair I'm using now which is HUGE. It will be a lot easier to maneuver in as well. Hopefully, it will also give me back some of my independence. I can't lift the chair I'm in now to put it in the car. So, I can't go anywhere without Mark. (Not that I mind his company, but it would be nice to be able to run to the store alone). It's amazing how life really DOES go on. We adjust, making lemonade from lemons no matter how how we may fight being given the lemons in the first place. We just have to remember that no matter how challenging/bad today may seem, tomorrow really IS another day and this day will pass. As will it's challenges. So, I'll just sit and quietly sip the lemonade and enjoy life...from my chair.

Friday, October 17, 2008

No Control....and coping

I find my brain often does it's best thinking as I'm lying in bed about to doze off for the night. Last night thoughts of "YOU HAVE NO CONTROL" were drifting through my head. Almost got up to blog, but it's a pain getting in the wheelchair and rolling to the other side of the house to my office. So, the other side of my brain that was trying to sleep, and shut the thinking side up, muttered "forgetta about it" (it's the Italian on my mother's side) and off to sleep I went. Of course, "YOU HAVE NO CONTROL" was the first thought I woke to this morning. Geesh, I either have to blog about that thought or get sucked into a depressive episode as I realize that I have NO CONTROL. I choose to blog, thank you very much.

We each go about our daily lives thinking we are in total control. If I go to work, I'll get my paycheck and pay my bills. We think. (What if your payroll check bounces? Happened TWICE to me in my lifetime). I'll save for retirement and a "rainy day" often doing without to do so. Then we watch our bank go under and the stock market crumble. There went my 401K. Again, no control.

Then, as we're living our lives, loving our families and pets, illness strikes. Not our own, but a beloved pet or family member. All we can do is helplessly stand by and watch. Feeling even more helpless because all we CAN do is pray and give support. Often that doesn't feel half enough. We're frustrated because we CAN'T fix it for them. Again, no control.

If illness strikes us, we have some control. As scant as that control may be. We can control which treatments we take, or not. That's about it. Except for one very important thing. We have TOTAL control over how we choose to react about our circumstances. We can give in, curl up in a fetal position and just give up. OR, we can choose to handle ourselves with as much grace as we can muster. (Sometimes it's not much). I have found, that for me personally, reaching out to others helps me keep my journey with MS in perspective. There are so many folks out there in the world suffering and hurting. Not just because of MS. They have lost loved ones. Whether those loved ones are part of their human or animal family the pain is no less. There are those who have lost their jobs and their homes. Too many families are apart because of war and other hardships. Too many families are torn apart because of ill spoken words and lack of ability to forgive. I thank God I "only" fall into the MSer category. True, I have had some serious struggles related to the MS, and I'm sure I have more ahead. However, it's about perspective and the realization that I have NO CONTROL. I just do the best I can and have a wonderful support network. Instead on focusing on "poor me" I reach out to others who are struggling and hurting. Their pain makes mine pale in comparison. They look at me at can't imagine how I'm coping in the chair. I look at them and can't imagine how they are dealing with the grief of having to put their long time four legged companion to sleep. (Rest in Peace Cody). Or, how they are coping with the loss of their home or job. I keep things in perspective by KNOWING it could ALWAYS be worse. SO, I count by blessings, hug my husband, my old dog and know that while I have no control over what will happen, I can control my reaction and how I cope. I keep a strangle hold on HOPE. I hope for better days for everyone. I hope that one day they will find a cure, not only for MS but for all disease. I pray that one day the world will have peace and that no more families will be separated. The world is such a big place of which I am such a small part. It's not control which keeps us moving forward, but Hope.

Wednesday, October 15, 2008

"Just stay in the chair"

*Clarification* I need to explain WHY I can't have an MRI. I am deaf and have bilateral cochlear implants. The implants in my head have magnets in them. Hence NO MRI's allowed.

Had an appointment with an Orthopedic today about my pelvis. 5 months after my fall I'm still having a lot of pain. What does he say?? "Without an MRI there is nothing I can do for you so just stay in the chair". IS HE FREAKING KIDDING ME?!?! What in the world did MD's do before MRI's? Isn't amazing that they were successfully able to diagnose and treat patients before the MRI was invented? Seriously, that's what he said. So in order to prevent the remake of a scene from the exorcist in his office (you know the scene. The one where Linda's head starts turning and she spews green), he decided to attempt to placate me with an order for a CT scan of the pelvis and a referral to a PAIN SPECIALIST. Ahhhh...the solution for everything. Pop a pill of two and you'll feel better. I don't want to see a pain specialist. How can they even THINK of sending you to a pain specialist when they don't even know what's wrong??? I guess if your doped up enough you won't care. Geesh. "Stay in the chair". Now, I do believe I've heard everything. The only GOOD thing about today....I'm too fired up now to feel sorry for myself!

Monday, October 13, 2008

Counting the days...

until I see the orthopedic about my left hip and pelvis. FINALLY. The insurance company authorized him to take over my ortho care FIVE MONTHS after my fall! My appointment is Wednesday morning. I can't wait to hear what he has to say. Of course the bone injuries are well healed. Now he has to figure out how to fix what didn't heal right and what non-bone injuries I have in there. Of course, it's my left side which is also the side most affected by MS. I'm hoping that if he can fix the ortho issue then maybe my walking will get better, I'll stop falling and get OUT of this chair! (I insist on thinking positive). Did I mention my Neurontin dose was increased again? I started having a horrible increase in neuropathy pain. OUCH. Nothing like feeling your being stuck with a million needles all at one time in several different places. They didn't feel like ultra fine needles either! Fortunately, the change in dose seems to be working. I still have some tingling, but it manageable and not painful. THAT I can live with. I can't imagine how folks who suffer from chronic pain do it. I've got a pretty high tolerance level, but I'm so thankful that between medications and my machine, my pain is generally pretty manageable. I'm hoping the orthopedic can fix the hip and pelvis so THAT pain is taken care of. I just hope it doesn't take something surgical to do it. Although after 5 months and the pain continuing, I'm afraid I tore something in there that he's going to have to fix. OUCH. Don't even want to think about that!

Sunday, October 12, 2008

Took a break

Mark took me off the mountain Friday. We went down to the condo in the valley. He took me out to a nice dinner at Roy's (one of my favorite places) and we returned home Saturday afternoon. Just a quick overnighter, but it was nice. It was also the first time I had been off the mountain since Texas, so I was WAY overdue! Fortunately, the condo turned out to be VERY wheelchair friendly as well. We didn't have to move anything in order for me to wheel around. What a difference 24 hours and a change of scenery makes in the mindset. I think my psyche just needed the break. Even if it was just for 24 hours. Being in the chair is, well, confining. The chair is too heavy for me to lift so it means I'm confined to the inside of my house and the porch. I think anyone would go stir crazy after awhile. There is only so much Fox news I can watch! Taking a break and getting into a different environment made a huge difference in my mind set.

The weather this morning is COLD. 29 degrees! Of course, it will warm up one more time before Fall decides to really set in. I'm up early this morning, as I usually am on post Rebif shot mornings. Even with taking all the ibuprofen I'm so achy even my skin hurts. I've had a big increase in neuropathey and it's pain the last week. So, Friday my Neurontin was upped. Really too early to tell if it's helping, but it sure isn't making it worse. I've also noticed a change in my hands. They just aren't working right. (Not like they worked right before)! They want to be lazy and not hold things. I find myself doing things like shaking them to "wake them up". DUH. Like that's going to work. Then they tingle on top of NOT working right. LOL. Perfect.

I came to the realization this weekend that I'm NOT adjusting to MS as well as I thought I was. Or should I say MS's effects. Being in a chair sucks. I keep trying to focus on the fact that being in a chair is NOT the worst thing that can happen to me in life. It's not been the best either. So, I'm taking it one minute at a time. As we all should no matter what is going on in our lives. Otherwise, we loose sight of the good things. THAT'S where we get into trouble.

Friday, October 10, 2008

Fall has arrived

YEAH! Fall is FINALLY here, so the picture is to enjoy the last glimpse of summer flowers. It's 39 here this morning, windy as usual with a crisp blue sky. I LOVE the fall. No heat to exacerbate the MS. Time to drag all the fall and winter clothing out and put away the summer shorts till next year. Amazing how fast this year is flying by. Hard to imagine that Thanksgiving is merely a month away! Before we know it Christmas will be here then the year over. After next week I'll be really busy once again. I'll be heading back to Texas for more treatments at the end of October. This time I'll be going for 10 days. Mark will be with me the first week then a girlfriend is flying out to stay with me the second week and fly home with me. (Staying alone wasn't an option per Mark). After I get back Thanksgiving will be mere weeks away. Thank goodness for the Internet. At least that's one way to get all my holiday shopping done without having to go out into the crowds. The second way is to send Mark out with a list. :)~

You'll notice I didn't discuss insurance, MS or symptoms this blog. ON PURPOSE. I need an MS break. Since MS isn't giving me one, I'm taking it anyway I can!

Thursday, October 09, 2008

Anger vs. Blessings Vs. Plain 'ol reality and Insurance Companies

Just 6 short months ago I was on my honeymoon in Maui. Walking, whale watching, snorkeling. Now, I sit in a wheelchair and by 6 p.m. don't even have the energy to push it along. What a difference 6 months makes. Who knows where I'll be 6 months from now. Hopefully, walking. Even if it means a walker full time, it's an improvement. Of course, life holds no guarantees. As a Christian I believe the Lord wants the best for me. I also believe that he allows things to happen, beyond our understanding in this world for specific reasons. Look at Job. I pray daily not to have the patience of Job, but the FAITH. I have to say, I've been more angry at God lately than not. Everything that has happened over the last 5 months has been completely beyond my ability to understand. So, instead of even trying to understand I REALLY DO try to focus on the blessings I have in my life. Not always easy, especially when your angry at the very Being who is giving you the blessings. Kind of a catch 22. I know I have to work past the anger to really appreciate the Blessings, but it's hard. How do you work through the anger and frustration of such a rapid change? I went from intermittently using the cane to chair in 5 months. Am I supposed to be over being angry in a week? A month? Six months? Then throw in fighting with insurance companies. I would LOVE to watch the UM folks that make the decisions struggle in a 35 pound "LIGHTWEIGHT" wheelchair at the end of the day up and down my ramps and over the carpet through the house. Idiots. We submitted a request to the insurance company for a rigid wheelchair yesterday. Anyone want to venture an opinion on whether they deny giving me a 17 pound chair vs. the monstrosity I'm in now? I know, I know, I should consider myself lucky they covered the 35 pound beast, but seriously. Why is is so hard for those with disabilities to get what we need? Isn't it tough enough to struggle with a disability without having to take on the bureaucratic BS of an insurance company. A company I may add that has never hesitated to accept the almost 1000 a month premium they receive from me and my employeer?? Let's not even venture into getting Social Security benefits. I have read such horror stories on the blogs of other Msers. We're talking about adults who have paid into the system for YEARS and now actually have to hire attorneys to receive benefits. It's criminal. The reality is that the system is NOT set up to help. Not when someone who becomes disabled has to go through two YEARS of bureaucratic hoops, (Hoops is NOT the word I wanted to use), in order to get benefits. Then there are those, like me, with "private insurance". Everyone thinks those with "private insurance" have it made. Guess again. Think about it. The insurance companies are in it to MAKE money. They are not charitable foundations. So, they deny as much as they can. They don't care if a person who can't walk has a wheelchair. If they can save the cost of the wheelchair by denying it for any reason at all they will. There is a woman in my MS support group with PRIVATE INSURANCE who had to wait for her income tax refund check to pay for her own wheelchair because her insurance denied it. Those who think a "universal health plan" is a good ideas...HAH. It will be run with the same mindset. SAVE MONEY. Deny, deny, deny. Boy, it's enough to make anyone angry.

Wednesday, October 08, 2008

Is it the weather?

* UPDATE* 10/9/08
Yesterday's entry needs a bit of clarification. I bolded the area before. This teeny sentence sparked such glee in my husband. In fact I believe he stated he was going to print it out, highlight it and make sure it was posted as he may never hear or see such a thing again. To my darling husband I state, "YEP".

Seems that a large percentage of the folks I've talked to with MS recently, or follow their blogs, are having flare-ups, exacerbation's or are battling depression to some degree. Most have had relatively good summers when it came to their MS. I it the barometer change with the fall or what? When your ill, physically or emotionally stressed it makes sense that a flare up or exacerbation will soon follow. What's frustrating is when it happens and you CAN'T pin point a cause. I can pin point the cause of mine over the last 5 months, fortunately. Or unfortunately depending on perspective. Frankly I would have preferred to do without the major stressor that started it all. However, when it comes to exacerbation's, I'd rather be able to pin point it. At least I know WHY. When an exacerbation comes flying out of left field, for me, it's more discouraging. Especially when you know that your doing everything your supposed to do to take care of yourself and it happens anyway. That plain 'ol sucks. Usually the summer is when most folks have the majority of their flare-ups. The heat is the number one culprit. Can't figure out why this fall is such a problem. If you get a cold, it makes sense. Illness is a stressor and MS LOVES stessors. I know I'm having more symptoms after the stress of the past few days dealing with the insurance adjuster. My husband was absolutely right. I shouldn't have allowed the situation to get me so upset. I've been paying for it for the past 2 days and may even need a visit to the MD. However, I digress. Fall is my favorite time of year. It's cooler and my body does much better without the heat. (Not to mention my electricity bill goes down because I'm not running the air 24/7). Time to drag the crock pot out for soups and chili (the HOTTER the better). Fire up the gas fireplace and sit in the evening and drink cider or hot chocolate. Yep, definitely my favorite time of year. My MS seems to go into hiatus during the fall. MS takes a vacation. Perhaps the tropics. I just wish it would loose it's passport and be unable to return! Wouldn't that be great. more MS. Well, I know I fully intend to enjoy the fall. Even if my view is a bit lower (from the chair) than last year. I have made a pact with myself. I refuse to allow the insurance company to push any more buttons. I have decided to push theirs. After all, if I can write a blog I can write letters of appeal and enjoy doing it. I can smother them in paper! After all, what else am I doing??

Tuesday, October 07, 2008

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.

Monday, October 06, 2008

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.

Sunday, October 05, 2008

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!

Saturday, October 04, 2008

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!!!!

Thursday, October 02, 2008

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.