Sunday, May 31, 2009

Rehab Update

Lord, I hate rehab. I know it IS a necessary evil and it WILL help me. Doesn't mean I have to like it though! I am now TWO days past my last session and I am in SO much pain. Between the pain of using all of my hip and pelvic muscles to move the freakin left leg while it is firmly encased in an air immobilizer (that goes from upper thing to ankle. Keep in mind I injured my back and pelvis a year ago and they still aren't right) to the burning, itching fire pain shooting down the left leg, (Oh, and did I mention the muscle spasms in BOTH legs), I told my husband it would be less painful to amputate the left leg without anesthesia.
Sigh. Seriously, rehab is coming along. As long as I wear the air brace I can kinda shuffle around the gym all the while holding onto my walker with a death grip so strong that my palms have red marks from the handles for a half hour after we stop. I really have to pay attention to what I'm doing (duh). I swing my left hip to move the foot forward, then have to bring the foot back to put it down. Then move the right foot. I've done this looking down every time because I can't tell where the left foot in placing. Well, last time my therapist wanted my head up.
Huh?? Well then how do I know where my left foot is coming down? So, the head went up, the grips on the walker increased and I was absolutely paranoid about falling. I also noted that the therapist increased the tightness of the hold he had on the gait belt. Perfect. So, I swung the left leg out, put it down, but had no idea where it was. When I went to move the right foot I realized the left foot was too far forward. Well, that was awkward. Eventually, I got to the point I was able to swing the left out and bring it back far enough that I was taking tiny steps. At least I didn't put the left foot on top of the right (Which I've done and almost ended up on my butt). Took forever to make the walk around the gym, but I did it.
It's such an adjustment to have to think about every step of performing an act that used to be totally natural. I mean how many folks THINK about the process of walking after age 3?
I keep telling myself I'll "get there". Can anyone tell me where "there" is?


Thank you so much for all the information on your experience with Tysabri. My neurologist is pretty adamant that I go on it, but it scares the bejeebies out of me. I see him again in two weeks and I have to make my decision. I, like you, have been through the CRABS. Copaxone was also my favorite. No side effects except for the rare site reaction. Unfortunately, it only held the "beast" off for about 18 months. Back to Rebif I went. UGH. Took 6 months before I felt remotely like anything human. I'm still taking the Rebif now, along with a mini pharmacy of oral medication 4 times a day. They still have me on 40mg of Prednisone and aren't titrating me off. So I'm up 50 freaking pounds since all this started on April 26th and afraid to put any food in my mouth for fear of gaining any more weight. My hair is falling out because of all the medication. It's not as traumatic as it was the first time it happened, but no fun. less.You made me feel a lot better about the Tysabri. I sure wish I had HALF your wit! Never change your writing style. No matter what you blog about you make it informative (even when your talking about housecleaning) and funny as can be. Thanks again for all the information!

Saturday, May 30, 2009

Another member of the MS "family"....

I received an email this morning from Jeff in Kentucky. He was diagnosed with MS in January of this year. So, MS has increased our numbers again, by one. I added the link to his blog to "Blogs I follow". Check out his blog. As we all know, being diagnosed is a big whammy, dealing with it even more so. I know you'll each introduce yourself and be there for him like you have me. Tell him Kimberly sent ya!

Thursday, May 28, 2009

Dark Places and Climbing Mt. Everest

It's hard to believe that May is coming to an end. MS has caused me to miss Spring this year. An exacerbation put me in the hospital followed by a stint in Rehab. A reminder that no matter what I do, how hard I try, what treatments I take, or pills I swallow, ultimately MS calls the shots. We can do everything in our power to prevent an exacerbation. Yet, the reality is MS will come to call whenever it wishes and do whatever damage it wants. It has a life of it's own, and it doesn't play nice or fair.

I've learned a lot over the past two months. I've learned how frustrated and angry I can become. I've learned what it feels like to go to a really "dark" place where I realized that no matter how much love and support I had around me, ultimately I was alone. I alone had to have the strength to pull away from the darkness that had enveloped me and fight to get back to life and living. Not only to get back to the people who loved me, but I had to get back to ME. I alone had to work hard in therapy to regain whatever function I could, and now, while I have a tremendous amount of support, it's me alone that is fighting to regain some sort of ability to get upright and become as independent as I possibly can.

Which brings me back to getting back ME. I've always been a fighter. I've always pushed myself as hard as I could to accomplish whatever I set out to do. I've never taken failure well. It only made me push harder. This could be a huge plus when it comes to my current therapy and trying to walk in any way I can. It could also be a curse. I have to find the psychological "Happy balance" between the two. Begin realistic of what the outcome can really be and not only how hard I need to push myself to get there, but not looking at going no further as a failure.

Only I can do that. ME. The ME I'm still trying to get back to. The ME that was in that "dark" place long enough that it started being comfortable. The ME I actually lost for awhile. Even I know my "personality" isn't back yet. I don't laugh often and I prefer to be alone rather than with people. That's a 180 degrees difference than the way I was prior to this exacerbation. True, I have a lot to adjust to. That's part of it. The other part is accepting what is. As simple and complex as that. No one can do that but ME, but I also know I can't do it without the tremendous support system I have. All of you, my family, friends and most importantly a husband who believes in me and loves me unconditionally, walking or not.

I refuse to become bitter or give up, because there IS life before, during and after an exacerbation. No matter how bad that exacerbation is. SO, my task now is to finish finding ME. To work hard in therapy while learning to accept my limitations. To be an MS SURVIVOR and not a victim. I may never climb Mt. Everest, but I, like you, WILL climb my personal Mt. Everest EVERYDAY. We may not make the national news, or receive an award. However, it doesn't make the Mt. Everest you and I successfully climb everyday any less impressive.

Wednesday, May 27, 2009

Simple pleasures......ode to chocolate

I just finished one of the things that makes me appreciate life. A bowl of chocolate, peanut butter cup with peanut butter swirls ice cream. It's simply impossible to be in a bad mood or complain about anything after that. Woman CAN live on chocolate alone. I'm a firm believer in that. There is something about chocolate that simply makes me feel better and more relaxed.

So, that being said, chocolate tonight has served it's purpose. While there ARE plenty of things I could complain about.....I'm simply going to lounge and enjoy the elevated mood that chocolate brought.

Funky Blog

I tried to have paragraph breaks in the previous entry. One the preview it looks great, but the breaks didn't transfer over. Sorry!

Physical Theraphy

Round two of PT was in the evening yesterday. I go to therapy fully secure in the knowledge that my therapist is a masochist and his full intention is to cause me as much suffering as possible. Thank goodness he does NOT disappoint or I would have zero chance of walking again. I also have the foresight to make sure someone goes with me for the hour drive each way. Because I know I won't have the stamina to to the actual driving on the return trip home.

All that being said, I would call my therapy session last night a complete success! Our plan yesterday was to start using braces to try and stabilize the left leg. An air splint was used yesterday. A niffy device that went from upper thigh to ankle, zipped, and then had two tubes in which a bicycle like pump was used to inflate it. Of course, he ( my physical therapist) had to find the balance between pumping it up solid enough so I could stand, yet leave some sort of circulation flowing throughout the leg! Once that was done it was time for the gait belt (to ensure I would be spared the indignity of being picked up off the floor) and attempting to get out of the chair with my left leg locked and rigid in front of me. Thankfully, we were successful on the first attempt and I managed to stay upright with the help of the "death grip" my trusty therapist had on the gait belt and my own personal death grips on the walker handles. BUT I WAS UP!!

Then came the really hard part. Walking. Getting the right leg to move is easy. It still does what all those electrical signals my brain tells it to do. My left leg on the other hand is worse than any rebellious teenager. I used my hip to swing the leg out for each step. Every time I put weight on the leg, the muscles spasmed (Thank God it saved the episode of severe muscle spascity for after the walking when I was on the mat. No way could I have stayed upright in that much pain), but the air brace gave the leg the support it needed.

So, there I was. Doing a step with the right leg, swinging the left leg out, shake and tremble, then repeat. (Sounds like a country dance step pattern: Step, swing, shake and tremble). All the while excited I was walking, well kinda walking, and terrified of landing on my butt. I did it though. Had to take a few breaks between yards as it was physically exhausting, but I managed to do pretty well. Of course the last step my left leg refused to move at all. My bodies way of telling me clearly IT was done even if the spirit wanted to keep going.

The next step is to have a specialized brace made which will take a few weeks. Apparently it will span from upper thigh to the bottom of my toes and may or may not have some kind of locking hinge on both sides of the knee. We'll see what magic can be done. Of course everyone is very sure to reinforce what has been said before them: That the wheelchair is now, and forever will be my primary mode of getting around. I'm adjusting to that, slowly. However, that being said, if a brace can be fabricated that will allow me to walk around my kitchen to cook, then I'll take that Blessing and simply learn to deal with the rest.

Tuesday, May 26, 2009


A fellow MSer is conducting a survey on her blog. The survey is a random survey about the symptoms experienced by those with MS. I encourage everyone with MS and their caregivers to take the survey and those learning about MS to follow for the results. Clicking on the title of this post should take you to Tara's blog. If not, will get you there!

Monday, May 25, 2009

I want to dance.......

Another holiday weekend comes to an end. It was wonderful having company for the weekend. Great to watch my husband truly relax and catch up with an old friend. I love to entertain. Used to do a lot of it. Now, even though everyone else did all the cooking and cleaning, I find myself absolutely exhausted.

Even with all the the physical challenges MS has given me, the fatigue is the worst. I just don't have any stamina. Simply getting out of bed, showering and getting dressed pretty well uses everything I've got. I hope that improves. Mark says to be patient. I've not been out of Rehab very long and it's going to take time. Well, time I have. So I'll work on reminding myself to TRY and be patient. It's just that I WANT to badly to be independent again. To be bi&*#%ing about work and not having enough time in the day to get things done. To spend the entire day in the kitchen baking. To take the dog for a walk. Thing that I took for granted.
Today I was able to wiggle the toes on my left foot. Something I haven't been able to do since the last exacerbation. I sure didn't take that for granted. I called Mark in to watch and even shared the news with friends at the BBQ. Perhaps one of the things I'm supposed to learn through all this is NOT to take even the smallest thing for granted. Before, I would have been too busy to spend much time being thankful I could walk. Now I have the time, and the mindset, to be incredibly excited that I can wiggle my toes. I hope and pray that being able to wiggle my toes means I'll get even more function back over the next few months.
Thirteen months ago I danced with my husband at our wedding. I want to dance with him again. Even if it's in a leg brace. I want to be upright, my head on his shoulder, wrapped in his arms with "Unforgettable" playing in the background. So, tomorrow I head to therapy where I'll work my butt off. We'll start trying brace ideas to stabilize the left leg and see what they can come up with. The goal for them is to get me walking....but I want to dance.

Sunday, May 24, 2009

Blog font changes

As was suggested by a fellow blogger, I have changed the font size to make it easier for those with vision problems (like me) to read it. Let me know what you think as I'm always open to suggestions. Sorry it took so long to change, but it took me awhile to figure it out!

Woman with MS scales Everest...and Viagra

In this mornings paper there was a brief (BRIEF, you would think it would deserve more than BRIEF), article about a woman with MS who had just completed scaling Mount Everest. She in fact has now scaled all seven major summits in the world.
Now, I think that's a hell of an accomplishment for ANYONE. I mean seriously, think back to your high school days and all those egotistical jocks (heck turn on the TV and listen to all the PRO egotistical jocks. How many of them could scale ONE of those summit's let alone all seven. Are you listening Mr. Bryant or Mr. Owens), who barely acknowledged our existence. How many have done anything remotely as remarkable? Let alone doing so with a Neurological disease. NONE. (It was also mentioned she is the first to climb Everest WITH a neurological disease). Kiddos to her.
Now, that being said. *&*$#@* Why can't I have HER M.S.?!?!? WHY can't MY M.S. be a mere inconvenience, so minor that I'M climbing Mt. Everest a week from Tuesday?? Why does my Everest have to be simply getting dressed independently in the morning? O.K, O.K,. I know. There ARE so many out there who wish they had MY M.S. and could dress themselves independently. I get it. I just hate this damn disease and wish NONE of us had it. That not a single one of us had to had help getting dressed, getting around, going to the bathroom, driving, or anything else. I wish everyone of us would wake up tomorrow morning and the headline on every paper across the world would read that an immediate cure for MS had been found. Then we could go back to $&*ching about having to go to work everyday and nagging our husbands to pick up their dirty socks.
I wish folks like Al Gore would shut up about Global Warming (not that I don't think the issue is important I just think he's a total hypocrite and the last person who should be saying squat about global warming, much less anything else) and Nancy Pelosi would just...... shut up. UNLESS they are going to start taking on and supporting causes that THEY aren't going to benefit neither a dime from or an increase in power by supporting. Things like a cure for MS. But, I digress. I'm sure there are those out there that believe that our plant will implode as a result of global warming tomorrow and that the CIA really DID withhold information from Madame Speaker and those issues are FAR more important and deserve far more media coverage than the lives of everyday people being destroyed NOW by MS and other diseases.
How sad is it that the combined salary of the New York Yankee ball players for ONE season is more money than is being devoted to MS research? That getting funding for MS research in the United States had to be hidden in a defense spending bill as "pork" to get passed? If we spent the combined salaries of all the professional athletes in the US for ONE year it would fund MS research for years. What a sad commentary on the values of our society that professional athletes are paid, (PLAYING A GAME for a few months each year), more than all the combined money spent on medical research not only for MS, but ALS, Parkinson's and all the other Neurological diseases that receive so little funding, yet devastate so many lives.
I didn't intend to blog about that. This entry took on a life of it's own. (As they tend too). I didn't even get into the drug companies and the outrageous prices they charge for our injections and other medications. I mean seriously if Viagra can support Nascar why can't it support MS research?

Friday, May 22, 2009

Wheelchair evaluation

Went for the new chair evaluation. It was really informative and not at all what I expected. We spent a little over an hour there. The intent was to go and be measured for a new Quickie wheelchair. That's what the insurance company authorized. After talking to the owner (it was nice dealing directly with him and not a salesperson) at length about my MS and the course it's taken over the last year he felt that the Quickie wouldn't meet my needs and it was time to go into an electric chair. Well, an electric chair was brought up several times in rehab and I was completely resistant. My mindset was that I wanted to stay in a manual wheelchair for as long as I could to keep my upper body strength. Of course, there are days when it's hard to push the chair because I simply don't have the energy. I can't even go check the mail because it's across the street and I can't get the chair over the small bump at the end of the driveway. So in some respects the manual chair limits my ability to be more independent. So, I tried an electric chair (and it just so happens today is one of my "off" days where I'm very tired, shaky and having almost constant spasms in my left leg) and frankly it would make things a whole lot easier. So, now my physiatrist is writing an order for the electric chair and they will submit it to the insurance company. Now we wait and see.

Thursday, May 21, 2009

oh...when naps were a luxury!

I wish I could say today was a better day. I have never in my ife experienced what I'm experienceing now on an emotional level. We all go through tough times and may deal with a case of the "blues". Perfectly normal. In fact if you DIDN'T have the "blues" now and then when your life was challenging then something is wrong. This is more than the "blues". I find myself in a very dark place emotionally. It's just too much to deal with at one time. The MS, the hearing and now the full time chair. I think part of the reason I find myself in such a dark place emotionally is because this exacerbation not only caught me off guard with it's presence, but also the severity. I had never been hospitalized due to an MS exacerbation, let alone go through rehab. I really expected to have the course if steroids at home like every time before. So, I was caught completely unprepared . Then, it seems like things just got worse from there. I honestly expected to walk out of rehab, at least using a walker. When the realization hit that it wasn't going to happen it was just devastating. All of my worst fears had come true. I was now completly dependent, my inependence gone. The positive side was that I received supurb medical care from the first encounter to the last. While rehab was no fun, it was exactly what I needed to do and where I needed to be. Now I'm trying to adjust. Adjusting to being in the chair full time. Adjusting to needing help with the simplest of tasks. I'm finding it's often the simplest things that cause the most frustration. Getting dressed, making something to eat, getting in and out of bed. The very things we all take for granted are now monumental feats that exhaust me. Then of course, I get frustrated with ME becasue what I used to be able to do in an hour now takes all morning and exhausts me. Being so tired of course makes the hearing issue worse, as if it wasn't bad enough on it's own. I have to concentrate so hard to understand people and read lips. When I'm over tired I can't do it. When all you can think about is a nap, focusing on a conversation is more than just a tad difficult. Oh, to go back to the days when a nap was a luxury and not a necessity!

Wednesday, May 20, 2009

Outpatient Rehab begins.......and reaching out

Today was day one of outpatient rehab. Most of the time was spent with my physical therapist completing an assessment questionnaire in a private office. We probably spent about 20 minutes in actual therapy time. He wanted to make sure I could safely transfer using the slide board and then show him the exercises I do at home. We didn't try any knee/leg braces today, so no attempt to walk with a walker. I don't go back to therapy until next Tuesday. Then, we're going to start trying different things to stabilize the left leg. (It goes into spasms when I attempt to weight bear or even too much movement). Even though we didn't do much work, I'm exhausted! It was nice to see the therapists and nurses that took such great care of me again. Going there felt like I was going back to a "safe place". Which revealed a lot to me. Means that for me, right now, the world outside rehab is a scary place to be. So, I'm going to work on that and the place to start is by finding someone that I can talk to. I've been through a lot in the past few years and I think this exacerbation simply put me at the very top of what I can deal with and adjust to without professional help. I think very few folks could have adjusted to total deafness, complications related to the deafness, and the MS all within a 4 year period without reaching the top of what they can deal with. I don't think it makes me weak, I think it actually makes me stronger by reaching out for help. So, as usual, I'll keep you all posted.

It starts today.....

Well, outpatient rehab starts today. I'm actually looking forward to it. I'm sure that will last about the first two minutes. We're going to be focusing on the left leg to see if they can figure out a way to stabilize it. Hoping that they can come up with some kind of brace which would allow me to at least be able to take a few steps around the house with the walker. I "get" that my days of walking round the mall of Home Depot are over, but I want to be able to walk around my kitchen and from the front door to the car. I will also be talking to them today about who they recommend for counseling. Figure they would know those that specialize with those trying to adapt to major life altering, deafen you, put you in a wheelchair, kind of situations. At least it's worth the question. So, I have to leave in a little over an hour so I had better start getting ready. The days of bed to out the door in 15 minutes are no longer. Everyone have a good day. Keep fighting. Keep putting one foot in front of the other and keep blogging! Your blogs are what is motivating ME right now!

Tuesday, May 19, 2009

Not a cheerful entry

Warning***** This is long and not my usual "gee ain't like grand" blog entry. I have always really, really tried to take whatever life throws at me and keep going. Putting one foot in front of the other after I recover from the stumble of trying not to take a direct hit from the bomb that was dropped on me. I've tried to stay on the path of my hopes, my dreams and the path I felt the Lord wanted me to walk. Be the person I felt HE wanted me to be. I've always tried to be the type of person that was a GOOD friend. The type that you could feel comfortable knocking on my door in the middle of the night because you had a fight with your husband and needed someone to talk to. The type that you could confide in, knowing that whatever you said would go no further. The type that would BE there, through thick and thin. I've worked, often more than one job at a time in order to support myself, my daughter and for awhile, even one of my grandchildren. I covered my mom's co-payments for awhile so she could afford to go to the doctors. I've even rescued baby crows and hand fed them for Pete's sake. No, I'm not a Saint but I REALLY try to be a good person. I simply try to do the right thing, even when it's the hardest thing in the world to do. When I got my MS diagnosis I had already gone through a life altering event and survived it. I lost my hearing. No reason why. An easy explanation would have been the MS. That was quickly ruled out when it was determined that all the hearing nerves worked. If MS had been the cause the nerves wouldn't have been able to conduct the electrical impulses. What took my hearing? For some unknown reason all the hair cells in both cochlea's died. Virus? Infection? Medication reaction? Who knows why they died. They simply did. Since then I have been through FOUR surgeries in an attempt to "hear". I won't even go into the details of those experiences. Suffice it to say that nothing went smoothly even though I did everything I was supposed to do. Once again circumstances beyond my control had a devastating impact on my life. However, I kept going. I kept working at trying to "hear". I refused to give in to the pity party I wanted to have. I wanted to work, to be productive so I pushed myself. Often to the brink of my emotional and physical limits to be able to do so. I simply wasn't going to quit. Through all this I had the support of family, my wonderful husband to be (this man saw me through all that while we were simply dating) and a few close friends. I believe it was their love and support that made all the difference in me being able to keep my determination level where it needed to be to fight that particular battle (which is still on going. Everyday is a battle to understand and "hear"). Then came MS. As if being deaf wasn't enough of a challenge. Once I got over the shock of the diagnosis the hardest part was self injecting. As an RN I've probably given over a million injections over my 17 year career, but giving an injection to someone else is a whole lot different than giving one to yourself! I probably took me a year to be able to inject myself without being squeamish about it. Seriously. How pathetic is that. I did it though. Because I had to. Because the "rules of the game" now said I had to have an injection 3 times a week. Over time I came to the mind set that, "OK, I can live with this. It's no biggy. It's simply an inconvenience". Whooooaaa. I should never have had that thought. Apparently simply having that thought changes the "rules of the game". Of course, the changes in rules are made without your knowledge, so you don't know what they are. Suddenly, any physical or intense emotional stress caused exacerbation's. Of course, you know this had to be shown to me because I didn't know the rules had changed. So, I fell, and injured myself (and there was the physical stress in the equation). Suddenly I couldn't work and was still struggling with the hearing issue, (there's the emotional equation(s)). That's when everything changed. Yet, I kept on going. Almost like the Energizer bunny. One foot in front of the other BECAUSE THAT IS WHAT YOU DO. Giving up isn't and never was an option. If you have been following my blog since I started it last July, you know about all the challenges of the last year with MS. So, I won't rehash them. Suffice it to say I kept going. Kept fighting. Kept trying. Now, we're here. Today...and I'm tired. I'm tired of not being able to even watch TV without the closed captioning on. I'm tired of not being able to have a simple conversation with my husband and be able to pick up the nuances of his voice. I'm tired of not being able to talk on the phone for minutes, let alone hours with my close friends. Now, MS has turned me into exactly what I was afraid of becoming. Dependent. Even more so because of the hearing. Can't be in a chair and not be able to hear in your environment, too dangerous. So, now I have to have someone with me EVERYWHERE I go to be my ears. It's bad enough I can't go grocery shopping alone just because I don't have a wheelchair lift in the van, but even if I did I'd still have to have someone with me to hear for me. Prior to the chair it wasn't as big an issue as being mobile allows you to be more visually aware of your environment because you can move freely. Your actively engaged in your environment. Not to mention that cars backing up can see you walking behind them. They can't see you in the chair and I can't hear the engines. Hence, I have to have someone with me. I am trying really hard to keep going right now and not giving up. Just quitting. No, I'm not talking about doing myself in or anything stupid like that. I'm talking about saying, OK, I give. I can't do this. I'm too tied to fight as hard as I have been. I don't have the energy or the desire to do it anymore. I'm done. Finished. I just want to stay in my house and let the world pass by. No more fighting the dragons at the door. No more. NO MORE. I have reached the point where enough is enough and I don't know where to go from here. Is giving up giving in or is it really finally accepting everything? Is it realizing that in spending so much time and energy fighting (and losing) my battles, I have actually been preventing myself from enjoying life? I feel lost right now. Too much has happened too fast and I'm expected to simply "adjust". I've come to the realization that on an emotional basis this is all too much for me. The hearing, now the chair. So I've decided to do what I should have done when I lost my hearing. I'm going to start seeing a counselor. Someone who I can talk all this out with. I'm so angry about my hearing and I have to keep that in, I'm struggling to adjust to life in a chair and I'm angry. If I have an episode of crying and being angry then it's "Drama", so I'm going to find someone who I can cry, talk, yell, beat a pillow with and it will be OK. Then they will help me move forward. Because right now, I just don't have it in me to be strong. I've had enough. I've been beaten down and the other team won. For me that's the scariest thing I've ever had to accept. The hearing and MS challenges are NOT going to go away. If I'm going get through this, it's going to be with help. So, I'm going to seek it out.

Sunday, May 17, 2009

One of those ughly days.....

UGH..back damn MS, BACK. That's what I want to roll through my house screaming at the top of my lungs today. I woke shortly after going to sleep to multiple episodes of muscle spascity. As I writhed in bed in bed praying for God just to take me NOW to get away from the pain, one spasm would ease up simply to allow another to start. This went on all freaking night. Now, I have no reserve left. My hands are shaky, my legs HURT and my frustration level is through the roof. I have to pee yet I know that getting out of bed and into the chair will drain me of what little strength I have left. I don't have TIME to be drained and tired, sore and frustrated. I have to be at mass at 8. Our Vicar returned from Iraq on Friday and will be giving mass. So, I WILL find the determination (I give up on finding the energy) to get up and get dresses and get my sorry MS butt to mass. Pray I don't have any spascity in church! UGH.

Friday, May 15, 2009

One Lovely Blog Award.....

This award was passed on to me this evening by Tara. Someone who had just found my blog. Thank you Tara, both for the award and the wonderful things you said about me in your blog mention. I'll try to keep living up to them :)

Tara's blog can be found at: Please check her blog out. Not only does she do a wonderful job with her blog, but she also has a web site a web site dedicated to custom canes Her blog is filled with informative information regarding MS and of course, how MS has touched not only her life, but the lives of her family as well. Of course, I have to admit, my favorite part of her blog is the Dr. Seuss poem. Tara, if you know where I can find that on a T-shirt let me know! I haven't laughed so hard since rehab started!

Now to pass this award on to others. What a tough choice. There are so many wonderful blogs out there that I follow. Some for great medical information, some because I wish I had half the chutzpah they have in dealing not only with MS, but the insensitive people they deal with as well. Others because some how, they always manage to keep going. Putting one foot in front of the other no matter what the new challenge MS throws at them. Most of all, I follow them because each one, in their own way inspires me to keep fighting, even when I don't want to any more. Sometimes it's Blindbeard and the not so tactful way she tells someone to stuff themselves. (Girl, I wish I could do that.)! Or MS ME and the way she get up and goes to work everyday to a high pressure, high stress job, yet held it all together when Hurricane Ike came calling. Then there is Webster. Webster is the "grounded one" for me. No matter what she is going through with her MS she is so matter of fact about it (O.K., except maybe the sleep thing). She makes it seem like MS is just something she does, no matter how big, bad or ugly it is she refuses to allow it to consume her life. She's too busy LIVING it. Herrad was one of the first MS Blogs I found When I first discovered her blog she was trying to raise funds for another MSer to receive equipment this person desperately needed. Herrad has a heart as big as the ocean that separates us. She is one that challenges all of us to be better people no matter what our own personal struggles or hardships may be.

There are so many other's I follow for very special reasons. This entry would go on for days if I tried to list them all and give the reason's why. Suffice it to say you each motivate me, encourage me, make me laugh and make me cry. I couldn't do this journey without you!

Moving Forward.......trying anyway

I've been home from Rehab since Tuesday afternoon. The days have flown by in a fog of frustration, anger, exhaustion and relief. Frustration because even the simplest tasks now require forethought and planning. Anger because I CAN'T do everything for myself. Exhaustion because I simply don't have the stamina, yet my pea brain still insists on pushing, and relief. Relief that I'm home. Even though I returned a completely changed person in so many ways, I'm home. Home, my safe harbour. Home may not protect me from the curves MS insists on throwing at me, but home is my refuge from a world that looks at you very differently when your in a chair. At home I don't have to worry if my words don't come out right. (Mark will tell you he speaks fluent Kimberly). I don't have to worry about being embarrassed because I can't do something simple, like open a door without help. Here, I have animals that love me unconditionally no matter what shape I'm in physically and a husband who is nothing short of a saint when it comes to dealing with me. I wish everyone could have a partner like my husband. Someone who hates your disease as much as you do, and is fighting it just as hard as your are, right by your side. I don't know what the future hold for me regarding my MS. My personal journey with MS has been filled with steep hills and sharp curves. I've managed to dodge a few rock slides only to get swept down the mountain side by an avalanche of new MS symptoms. Looking back on my journey there are a few thing that really strike me. One of them is about people. There are actually very few of the people who started walking this journey in the beginning still hanging around. My immediate family is still there. I couldn't pry them away even if I wanted to (Thank God). Distant family members fell away as did some who I thought were good friends. I no longer attempt to make excuses for any of them. They just couldn't cut it and my life is better for the lack of their presence. I look around at the faces of those who are actively involved with my journey now and and most weren't there at the start of my journey. Some are walking their own journey with MS and we bolster one another up when one of us stumbles. Some, I swear are angels in human form, determined to help me get through this journey no matter what it takes. While MS has taken so much, it has also given me friends that I wouldn't have otherwise. THIS is what I try to concentrate on when things are tough (like now). When all I want to do is give up and just stay in bed, covers pulled up over my head. I wish I knew how all this ends up. All I can do is keep trying to move forward...or at least try anyway.

Wednesday, May 13, 2009

Home Sweet Home

Arrived home yesterday afternoon. Exhilarated, exhausted, overwhelmed and scared. All rolled into one. Anxiously awaiting the reunion with my animals. (I have to admit that while I LOVE both of my pets equally, Maggie is my favorite, but I don't let that out). My arrival home was rather anti climatic. Of course Toonie in typical dog fashion was jumping all over the place and running through out the house in her gleeful expression of having mom home after several weeks away Maggie, on the other hand, stretched, flicked her tail and promptly walked away. Her body language clearing voicing her displeasure at having been "abandoned" without her consent. Ahhh...cats. Coming home has been a real adjustment. While I worked my butt off in rehab it was easier there. Easier to get around, easier to problem solve because the environment was set up FOR wheelchair use. Not here. The doors are too freaking narrow, the carpet is hard to roll on and there are too many obstacles to get around. It's easy to become very frustrated and quickly behind frustration flows a river of anger. I'm taking FIFTEEN prescriptions now. Can you imagine. MS has attacked my body to the point that I need a medication to make sure I can even pee. Pathetic. I'm still as determined to continue with therapy to see what I can get back as far as strength and function. Honestly, I'd be happy if they could just figure out a way to stabilize my left knee so I can walk around my kitchen with the walker. The rest we can work on over time and therapy. Mark left for the valley last night. He is in the dental chair as we speak. I told him NOT to come home today, just stay in the valley and decompress. As hard as the past few weeks have been on me, they have been just as difficult for him. He needs time to breathe. He'll be heading to AZ on Thursday for a graduation that I am so upset I'm not strong enough to travel to, but it is what it is. He will be home on Saturday or Sunday, hopefully with his batteries partially recharged. So, today begins day one at home. Learning the best ways to do things and setting up routines. I have MD appointment this afternoon, so it begins. I'll keep you all posted!

Monday, May 11, 2009

Home Bound!

Tomorrow is the day I've been waiting for! I'm going home. I'm thrilled to be going home, but I have to admit to having some trepidation about it as well. I feel like a 9 year old that has been waiting in line, excitedly, for my turn on the new big roller coaster. Now that I'm actually getting on the coaster, the bar being lowered across my lap, I'm more scared than excited and wish I had the guts just to scoot out the other side. That's how I feel about going home. So many things will be the same, yet very different. There are so many things that I will be learning how to do differently. So many things that were natural to do, now aren't. I know I'll adjust. I'm a fighter and this certainly isn't the first challenge life has thrown at me. It's not even the most difficult one, the hearing issues and complications were far more challenging. I got through them all, and I know God will get me through this one as well. I'll spend the rest of this week resting and starting the adaptation process at home. The following week I start Outpatient therapy. 3 days a week of PT and 3 days a week of OT. All the sessions will be here at the rehab hospital which will be nice in that I know the staff. However, it is and hour away from home each way, so that is a little bit of a challenge, especially since I don't have a wheelchair lift installed in the van yet. I simply can't afford to do it. It's going to run 3500.00 The MS Society will contribute 400 towards it, but it's going to have to wait a bit. Thankfully, friends have already started lining up to volunteer to help in anyway they can. Even if it's simply lifting the chair in and out of the van. I don't know what I'd do without the phenomenal group of folks I have in my life. Not only do you learn who your friends AREN'T when things get tough, you certainly learn who they are. My fellow bloggers have been great with support as well. Your comments have made me laugh when not much was funny and you helped me remember that somewhere, someone else was going thorugh the exact same thing. Thanks for you support, from the bottom of my heart. I couldn't have done this without each one of you, family, friends and fellow bloggers, because frankly, Rehab SUCKS! LOL

Sunday, May 10, 2009

Getting ready for home

Being on on pass yesterday was just great. I came back very tired, but it was a GOOD tired. I had my hair cut, my nails done and enjoyed a completely unhealthy, wonderfully edible lunch with my husband. In other words, the only thing that would have made the day any more perfect was if I had gone home to stay! Today has been a quiet day. No therapy which has been nice. Meant today has been really relaxing. Unfortunately, I'm having A LOT of problems with muscle spasticity on the right side. The kind where my toes draw under each other and my foot just locks up and is rigid. Freakin painful. So, I've taken every medication I can take to try and get it to ease up. Not much luck yet. It's frustrating when you can't point out an exact reason or stimulus that causes everything to lock up. More frustrating is the pain. Ouch doesn't even begin to cover it. Tomorrow will be my last full day here in rehab. The staff has been great here and as challenging as the experience has been, I'm glad I came. While there were several dark days here, I know I wouldn't be a functional as I am without this experience and the hard work that not only I put in, but the staff and my husband as well. I'm not naive enough to begin to believe that the hard part is over. I know I'll have more challenges at home. Challenges we haven't even thought about yet. Not to mention outpatient therapy 3 days a week. I also know that it's the great support group and faith we have that will get my husband and I through whatever else comes our way. Our first big task at home will be making our kitchen more "Kimberly" friendly again. We'll be moving plates, bowls, cups and glass wear down from the upper cabinets into the lower drawers. (Which is actually quite the rage in new kitchens so we'll just be keeping up with the current trend)! We will also be having a mirror installed behind the cook top stove so I can see into pans on the stove. That way I can keep cooking! The challenge is going to be finding either a company to order the mirror from (It has to be mounted and be able to be angled) or create something that will work. If anyone has any links to web sites or ideas please let me know! I wonder if this is the place where I admit that as excitted as I am to be going home, I'm actually pretty nervous about it too. Yep, think it is

Saturday, May 09, 2009

3 hours and counting......

Only three hours until I'm out on pass. Amazing what a big deal it is, but I can't wait to get out of this place. Even if it is only for a few hours. I'm going to get my hair cut (I look way to shaggy for my tastes) and relax. It will be nice not to be on a time table and have a day off from therapy. My tentative discharge is scheduled for Tuesday and I hope we manage to stick with that. Rehab just sucks. I know how important it is, but it sucks none the less. Besides, it doesn't matter how much work and effort I put in, I'm really not going to know how independent I am until I get home in my own surroundings. One of the therapies they don't offer here, which frankly shocks me, is counseling. Everyone here is going through a life altering experience and trying to find ways to emotionally cope and adapt. You'd think that talking to a counselor would be as required during rehab as physical and occupational therapy is. I've decided to find a therapist when I get out of here. I know I need someone to talk to to help me adjust to everything. Mark is wonderful, but he can't help with everything. I need to be able to "dump" on someone and spare him as much of it as I can. After all, he's trying to adjust to the changes as well and they are big ones. I'm not walking at all now. Hopefully, that will improve over time with more therapy, but that's where it is now. That's a pretty big freaking change. Anyway, before this entry gets to heavy I'm closing it out. There is a new blog I'm following ( Called the Learning Curve)and I've posted a link for it on my blog. It's completely non MS related, but looks like it's going to be one of those blogs filled with profound thoughts that will make you ponder. Check it out. Everyone have a great day!

Friday, May 08, 2009

Finally...the week is over

I'm done, totally toast. Exhausted. Thankfully, it's Friday and my therapy is done for the week. I'm out of here for four hours tomorrow on pass (can't wait). Going to get my hair cut and enjoy a nice meal with my husband. Of course, even though the insurance company has had all the orders for the equipment I'll need when I get home since Wednesday morning, not a single thing has been authorized. Including the brace I was supposed to be fitted for today. Of course, now it's Friday afternoon and 4:45 so the likelihood of anything, including the brace getting approved today is slim to none. Which means there is a great possibility I won't have it before I'm discharged on Tuesday. Not that it really makes a difference I guess as I'm not walking. However, not having it will increase the possibility of a fall during transferring with the foot drop. Guess they would rather pay for hospital stays and ER visits than authorize things in a timely manner in order to prevent further problems. Silly me for thinking that way. I hope my MS behaves tonight and decided not to play Jeopardy with my body parts. I could use the uninterrupted sleep

MS Jeopardy,,,,,,

I was so tired when I decided to call it a night last night. I took the meds the nurse brought, made that final bathroom run, crawled into the oh, so, comfy hospital bed and was out. Totally, wonderfully, blissfully unaware of what MS's plans were for me this night. MS decided that I had simply had enough rest at 11:45 and it was time for for me to wake up. Quickly, painfully, completely and totally. Ahhhhh yes. MS had decided to play it's favorite middle of the day, afternoon, evening or night game with me: Muscle Spascity Jeopardy. This time MS chose, "Let's lock the right knee up for 600.00". As I awoke writhing in pain grasping for the call light knowing full well that there would be absolutely nothing the nurse could do about it, but hoping for a miracle anyway, my right knee locked. Frozen in an abnormal bent position as the muscles battled it out for position. I had no idea my knee could bend in that direction. I never WANTED to know my knee could bend that way! The nurse came in asking what I needed. It didn't take her long to realize that what I needed was a hammer to the head to beat me into unconsciousness while MS played it's game. As that, unfortunately, wasn't an option she brought a pain pill as I tried not to wake my roomie with my moan and fervent prayers. Finally, after what seemed like an eternity (Which in reality was only (HAH I say ONLY) 20 minutes, MS decided it had easily won the round, deciding I was to much of a wimp to have much fun with and retreated. Now, I sit here wide awake afraid to go back to sleep for fear of another round of MS Jeopardy. God, I hate this disease.

Thursday, May 07, 2009

Another Day done......

Well...I have now completed my first full week here in Rehab. and I gotta tell you I am EXHAUSTED. I live for 7 p.m. when I'm able to get into bed and get to sleep. Fortunately, I didn't break my ankle when I fell last night. It's a little swollen and has a small amount of bruising, but thankfully nothing more serious. The worst part is the darn discomfort. Sprains hurt! My goal for this evening. NO FALLING! Thankfully tomorrow is Friday and on Saturday I'm being sprung on a 4 hour pass. Long enough to get my hair trimmed and have a late lunch with my wonderful husband. I can't wait! Then, all going well I'll be discharged on Tuesday. Of course now the big issue is waiting to see what the insurance will cover and what they won't. So, frankly were not holding our breath depending on them for much. Sad reality is that even those with insurance can't get the things they need. Pathetic isn't it. I'm being fitted with my brace for the left foot and ankle tomorrow. Won't find out until after the fact if the insurance will cover that. I would think they would, but I'm not counting on anything for sure! I still can't figure out how to get everyone's comments to show following each post. I may have to change the actually layout. Well, enough for today. I'm pooped. Unless of course something amusing happens! Night all!

Three Thirty in the morning and not all is well......

If I had two good legs to stand on I'd kick myself is the ass. HARD. If I've learned ANYTHING in Rehab, I've learned that nothing when it comes to the use of my body is easy or natural anymore. Just about everything requires conscious thought and effort. Put this hand here, shift this much of your left hip here, grasp this handle at the exact moment with your right hand as your left hip slides here, etc. Well, last night I was a bit overtired and stressed and didn't consciously think about a step. As a result I either didn't do it correctly or omitted it altogether. (You MSers see this one coming don't you)? Yep, you guessed it. BOOM. My keister and left ankle presented themselves right on the floor. HARD. (Of course, the weight had to land on the left ankle. The very ankle that's stiffening, has foot drop and is the most vulnerable. Why, oh why is it always the most vulnerable part of our bodies we land on)?? Fortunately, nothing broken. Just immediate swelling of the ankle and pain. The staff has been great. I've had ice packs on it all night long and pain medication which has helped with both. It actually looks O.K. 7 hours post fall. I still have some swelling, but it's minimal, and I don't see much if any bruising. (Bruising in other areas but not there). I just hope that this doesn't make them want to keep me in here longer. I have been SO careful and pushed myself so hard to pay attention and follow all their instructions to the letter to avoid falls. Not only here, but when I get home. So needless to say I'm frustrated at myself. I know falls are still going to happen. It's the nature of MS, I was just hoping to at least avoid one in Rehab. :( On a completely different topic. I've noticed some of your blogs actually have the comments posted after each entry instead of simple stating the number of comments made. How the heck do you do that??? I have tried and tried to format my blog that way and can't. Can someone send me the instructions on how to do that? THANKS!!-Kim

Wednesday, May 06, 2009

Picked my Rehab Battle

I actually got to bake cookies today. Yep. They took me into a non-modified kitchen and had me bake a dozen oatmeal chocolate chip cookies to see if not only I wouldn't burn myself, but burn the place down as well. Big whoop. I can bake a dozen cookies sitting in a chair. I know, I know, crappy attitude, but seriously. Who cares if I can bake a dozen cookies sitting in a chair? My daughter could do that by the time she was 6. Of course, instead of sitting in a wheelchair she was sitting on a stool in the kitchen, but she was sitting none the less and had the same amount of direct supervision that I had today. The only positive is that they put another check mark next to my name: Able to transfer from chair to bed using sliding board (check), able to transfer to toilet (check), able to transfer to and from passenger seat of van without landing on ass in parking lot (check), able to put cookie sheet in and remove from hot oven without burning self or setting rehab hospital on fire (check, check, check). They had my case conference today (which of course neither myself nor my husband was invited to attend). The end result is that they ordered the brace for my foot and ankle, they ordered a slide board for home, they ordered a wheelchair lift for the van (Of course the insurance company won't pay a dine for that), the ordered all kinds of goodies for the bathroom that also isn't covered by insurance and, oh yeah, they decided that my tentative discharge date is Thursday, and I will be wheelchair dependent. So, you know I had to argue with at least one thing, so I dug my heels in and picked my battle. I don't want to be discharged Thursday. I want to go home Tuesday. Period. Why Tuesday you ask. Because we have a very special graduation to attend in Arizona on Thursday and I'm not missing it over two days. If they had decided I needed another week or so of in patient therapy I wouldn't have picked that battle, but two days? Nah, I don't think so. I may be weak and not myself, but I'm going to be there. I'll simply start my outpatient theraphy sooner. So, I'll let you know what the outcome of that is.

Tuesday, May 05, 2009

Tomorrow is the BIG day......

No, I'm not going home :( it's my first case management meeting. This is where everyone (except for myself and my family) get together and talk about my progress, or lack there of, my plan of care and about how long I can expect to be here. I'm a little irked about how they do that here. As a patient I, as well as my family should be VERY involved in determining what my plan of care is, what the goal for my treatment is and involved in open dialogue about my progress and how much progress I can expect to make. This meeting shouldn't consist of only the medical staff. Perhaps it's simply the nurse in me that has always felt patients do better when they are more involved during the decision making process for their care whenever possible. Not to mention the family members that are responsible for them when they are discharged. So, tomorrow aught to be interesting, because if I disagree with the plan of care, I'm going to tell them. Today was exhausting. I had a total of 6 sessions of PT and OT. Speech didn't happen (I don't know why they didn't come get me). I managed to squeeze a much needed nap in this afternoon. Seems that every day they change my PT goal a little bit. Originally they really were on board with me trying to use the walker with a brace and not using any adaptive equipment when I transferred from the chair to bed, chair, etc. Now, they have me using a transfer board and using the walker less. Maybe it's because we're waiting on the brace(s) for the walker and they just feel that with my left upper body strength not always so great that using the transfer board is safer. Just wish folks would explain it to me. After all. I haven't lost my mind....yet. Father Paul came by this evening and brought Chinese and Communion. A wonderful combination! He also came carrying a curling iron that a girlfriend thought I could use. God Bless them both! One thing about being in the hospital and rehab is that you begin to look like you feel. Tired, frustrated, overwhelmed and every other not so positive emotion that exists. Communion, Spiritual recharging and a curling iron will go a long way to making me feel better about myself for a bit!

Alien battle

Last night was no fun. I have struggled with increasing muscle spascity for the past two days. Not unexpected considering the physical therapy. Yesterday, the physiatrist came in and added Roboxin to try and help the horrible muscle spasms I started having during PT. When I crawled into bed everything started off well. Then, suddenly, with no warning as usual, the nerves in my legs just went nuts. The twitched all night long. No mater what I did or the staff tried eased them. They weren't the painful spasticity that I had after PT, thank goodness, but the firm twitching. You MSers know the type. The twitching that indicates you have an alien life form trying to push it's way out of your body through your legs. Every time "it" would settle down and I'd doze off the battle for inhabitation of my body would begin again. Of course, ultimately it was a draw. Neither successfully won the battle and I'm exhausted today with a full therapy schedule. Perfect. Well, I'm off to wheel to breakfast to see what kind of yummy choices I have for breakfast this morning. Blog at you later!

Thank you to my fellow bloggers......

I want to say thank you for all your comments and emails! This is one of the things that makes blogging so important. Not only are we connected to a cyber community of people who "get it", but the support we give one another is absolutely wonderful. I can't thank each of you enough and tell you how much I enjoy your comments. You help me laugh when things are tough!


Monday, May 04, 2009

Enough with the prune juice...

UGH....just downed glasses three and four of the warm (and I mean heated in the microwave warm) prune juice. Surely something would start working by now! Did a second round with physical therapy this afternoon. No walking, just standing at the bars. THAT was tough enough. Then Speech Therapy for an hour long evaluation to be concluded tomorrow. The best part of the day was when Mark brought Petunia (Toonie) for a visit. Toonie is our 7 month old Oldde English Bulldogge. I sure miss my animals. It's amazing how much of a comfort they are to us when our lives get complicated or scary. Mark's going to try to bring Maggie (our cat) down next weekend for a visit. Apparently she's, the one who's really pining away for her mom. Well, I'm exhausted and going to close for the night. Blog at you all again tomorrow!

I walked...Ok maybe I shuffled.

Just got back from PT. I told them my goal was to get upright and walk with the walker in the brace. Wow....was it tough. Just getting upright in the brace is an adjustment because of the way it holds my foot and ankle. Once upright, belt around the waist with the physical therapist holding on with a death grip, I was ready. One....two....three. OK, try again. One....two...three. slide the left foot forward toes pointing up, put toes down, knee bobbles, leg shakes and foot is down. Phew step one. YEAH! No time to celebrate though. Not with the therapist telling me, "tighten your butt, squeeze your thighs, bend your knee before you step" (Keeping in mind I can't FEEL my thingh muscles or butt) . Just trying to follow the instructions was daunting. Heck, frankly trying to stay UPRIGHT was daunting. I made it about 10 shuffling steps before the dizziness and nausea hit. I had to sit in the chair for a few. Waited about 10 minutes for it to pass and made attempt number two. Made it to the matt before the horrible muscle spascity hit. OMG. There is NOTHING more painful than muscle spascity. My entire left leg from the hip down was locked up. Nothing remotely fun about spasticity. I am very excited I got out of the chair. Thrilled in fact. Hope to do a repeat on a daily basis!

Rehab...the saga continues

Today begins the first full week in Rehab. (I wanted to call it something else but Hell is worse than this). My week began with a 4 a.m. wake up call for a blood pressure check followed by a 5 a.m. blood draw. By that time, what the heck, I'm up. So. I've been sitting here up and dressed since 6 this morning. No breakfast for me today as I'm pretty miserable with stomach pains related to the internal plumbing being completely out of whack. Another MD came in to visit this morning, so fortunately he is going to address that as well as lower my oral Prednisolone from 80mg to 60mg. Hopefully, the weight gain will start slowing down a bit. (I'm always horrified at how much weight I gain on this stuff. Now up 40 and counting. That's POUNDS folks. In ONE flipping week). I've already consumed two WARM glass of prune juice (can you say YUCK. Shows how desperate I am that I gladly slugged both glasses back like a college frat boy chugging beer through a funnel). I'm looking forward to talking to the Physical Therapist today. I want to find out how long it's going to be before they start brace fitting. I know the sooner they get the braces on and I re-learn to walk with them, the sooner I can get out of here. I completely understand that I'm going to be spending most of my time in a chair. I get it. However, I also know that it IS possible for me to spend some time walking with the help of adaptive equipment, so that's got to be my focus. I won't give in and just sit in the chair. I'll settle for walking really funny with a walker every now and then. Well, enough for now, It' pill time. More to follow later!

Sunday, May 03, 2009

What? Am I EIGHT??

OK, this started yesterday at lunch. I wheeled up to the lunch counter (I would NEVER wait 40 minutes in line for this food if I had any choice). The choices for lunch were Spaghetti and mystery meat sauce, some kind of mixed veggies and grilled cheese sandwich. So, choosing the least offensive looking I chose the grilled cheese sandwich. The woman behind the counter (Flash back to every bad comedy movie you have ever seen featuring a woman serving slop behind a cafeteria counter), said, "Is that all you want"? I replied, yes it was. Well. She then proceeded to fill my plate with everything else ON TOP of the requested grilled cheese sandwich. As I wheeled myself seething to the table there were many, many things I wanted to say. Somehow I managed to keep my mouth zipped. (MY mother would have been so proud). I sat, ate my soggy grilled cheese sandwich and left the rest. Well, this morning I rolled up again for breakfast to find to my absolute horror the same woman behind the counter. This time when she asked what I wanted I simply stated, "I detest eggs and just want a muffin" (ALL the other choices were egg based). When she asked it I was sure I said YES as emphatically as I could without raising my voice. I wheeled to the table in triumph. Small muffin centered on my plate, a yoplait yogurt and banana proudly topping the tray off. As I sat at the table peeling the paper from my muffin, the elderly gentleman sitting next to me leaned over and said, "How did you pull that off? They insist on loading my plate with everything." I smiled and told him that I simply told her I don't like eggs. (I didn't want to start a revolt in the dining room by telling him the truth. Just because I'm on the other side of the counter doesn't mean I can't make a decision on my own. I'm NOT eight and have to be told what to eat.

Saturday, May 02, 2009

It could be worse

The day is done, hubby is on his way back home, and I am completely exhausted. Most of the exhaustion is emotional I'm sure. Coming face to face with your limitations, especially the one's you've been trying so hard to hide and overcome, is painful. Thankfully my vision continues to improve which makes lip reading A LOT easier! Hence my communicating with the staff here is getting much easier. It was a real challenge while I was in the first hospital. I had to close my eye to try and focus on them to understand. Even wearing the cochlear implants (but their lack of effectiveness is a whole other saga). Now I can identify people with the right eye and focus. The clarity still isn't what it was, but time will tell if it will come back. I'm still on high dose oral steroids (and have an extra 30 pounds to prove it). When I get out of here I'll rest for a week, see the Opthomologist, Neurologist and head to UCLA for more treatment. I'm working on trying to set a realistic goal for myself. Yet to be determined. Right now I honestly think my goal is simply to keep my spirits up. I'm also having quite a bit of pain tonight in my back and left leg. Simply other things that make getting through all of this a challenge. I look around and honestly try to focus on the fact that it COULD be worse. This WILL pass and I am determined to come out ht other side stronger for this. However, right at this minute......all I want to do is have a good cry.

Just another day in rehab

Well, at least breakfast was hot today! Of course it was pretty tasteless so I only ate a few bites, but it's was better than nothing and it COULD have been worse. It could have been cold and tasteless! LOL This morning started off with breakfast and a rousing bout of PT. PT. Physical Torture. Where you learn not only how weak your muscles really are, but that there are true sadists in the world. They are merely called Physical Therapists. Yeah, Yeah, I know. They are really trying to help, but seriously. When the nerves don't innervate the muscle what exactly are you helping??On the positive side. I've learned a better way of getting in and out of my chair. It still feels awkward, but it's safer. My right leg in still strong, thank God, but I can barely weight bear with the left leg it's so weak. So I have to make sure that when I have to pivot to get into a bed or chair I don't have to rely of the left at all. The staff here really is great. I know they try to answer the lights as quickly as they can but I swear, each patient needs two lights. One to push for a bathroom run and one to push for everything else. I'm not waiting for the bathroom. When you gotta go, you gotta go. Fall Precautions or not I'm wheeling to the bathroom if my light isn't answered in 2 minutes. With bladder problems I can't wait and I know they are already waiting to start a cath freaking way.

Friday, May 01, 2009

Something to celebrate!

I am so pleasantly shocked I can't stand it. (It's not rehab, it still sucks and as each moment passes I find out how many more limitations I have which is really hard to take). What I AM excited about is the Physiatrist treating me here in Rehab is VERY supportive about me using Dr. Rhodes' machine! He actually wrote an order for me to use it starting tonight and I am hooked up and the machine is turned on as I type. I also sent Dr. Rhodes an email requesting more protocols and changes. I KNOW his machine works and if he can get me pain free again that's enough. I found out today some ways to adapt to things I had to have help doing. With the use of gadgets I can now put my own socks and shoes on again, button my shirts and have learned a safer way to get from bed to chair. I'm still frustrated about being here. It's depressing. I never thought I'd end up a patient at a place like this. I try to stay focused by looking around me and saying to myself that it could be worse. However, at 46, it shouldn't be this bad. So, I'm having a tough time balancing the thoughts and feelings I have. I go from being so damn angry about this disease to being guilty that I don't feel I'm being a good wife to my husband. He's wonderful. He's so supportive, and the outpouring of love and support we both have received from our family, friends and Church has been nothing short of amazing. I know I'm so incredibly blessed, but right now, I'm simply incredibly angry.

This soooo sucks.... far this sucks. I woke up every two hours having to pee because of the medication they put me on. Less sleep here than in the hospital. Then, I woke up around 3 to pee once again and they had my rails up like I suddenly became an 89 year old patient with dementia. Rang the bell and was told I'm not allowed to transfer to my chair without help (HELLO I've been doing that since I got the damn thing in September) AND I'm not allowed to get dressed in the morning with out OT's help. O.K, O.K. Trying to be rational here for just a minute (before all rationality leaves for the duration of my stay). I completely get the OT dressing thing. They want to see how much help I need with adaptive equipment. Even I will admit I need some help in that area. I can also understand the wheelchair transfer, to a degree. However, my main issue, is that they didn't tell me all this crap in advance. Don't have me wake up in the middle of the night with a full bladder and have to wait on a call light when I've been getting up previously without help. When I want to get up and get dressed, don't tell me THEN I can't. Tell me this stuff the night before so I know what to expect. If you tell me what the plan of care is, I'm more than cooperative. Spring stuff of me and I'm a lot less apt to be really happy. I'm not a brain injured patient who doesn't understand. Just because my body may not cooperate doesn't mean my brain doesn't either! O.K. rant over.