Thursday, July 31, 2008

Staying Active with MS

Staying active isn't always the easiest. With MS or NOT. Our lives are busy, hectic, stress filled and we're lucky if there is enough time in the day to think let alone be "active". Add to the mix a disease that makes mobility a challenge and energy levels often non-existent and it becomes that much easier just to "park it" on the couch. Perfect. NOT. Having balance and mobility issues makes it even MORE important to keep moving. What you don't use, you lose. Especially when it comes to core strength. Our core stregnth greatly impacts our balance as well. So, if your core is weak, your at even greater risk for balance problems. Not to mention back problems as well! There are a lot of exercises you can do to help strengthen your core muscles. Most of the exercises I do for my core are actually done sitting down! (So being in a wheelchair or having poor balance is no excuse). RIDING is a GREAT exercise for your core. There are a lot of therapeutic riding centers. Find the one in your area. Contact your MD and ask for a physical therapy evaluation. Work with a physical therapist to design a program specifically for you. PT is covered by insurance and a lot of insurance carriers WILL cover the cost of a therapeutic riding program is well. (They may deny it the first time, but if you appeal and your Neurologist writes a letter, they will reconsider). Another thing I suggest for helping your balance and core: Wii. Yep. Wii. Wii has a fitness program called "Wii Fit". It comes with a special platform that you stand on. (Although not all the games require the use of the board). The program has Yoga, Aerobics and balance games. I can't do the aerobics, but I enjoy the Yoga portion as well as some of the balance games. Yoga is a great exercise for MSers and easily modified. Again, some insurance carries will cover the cost if it's a prescribed therapy. (The yoga, not the Wii). Of course, this is where the safety warning is issued. CHECK WITH YOU DOCTOR BEFORE STARTING ANY EXERCISE PROGRAM. There, now that's out of the way. Another reminder for MSers: Watch the heat. If your going to increase your physical activity remember to monitor how your body is tolerating the heat. Both the external temperature as well as your internal temperature. Don't over do. Start slow. Just keep moving and stay as active as you can be! It will make a BIG difference. Not only physically but psychologically as well.

Wednesday, July 30, 2008

Communication and Support

I had an interesting conversation today with someone during my physical therapy. The topic was caregiver stress and how that stress effects the relationship between the MS patient and their loved one. Especially if the caregiver is the husband/wife/significant other of the patient. As the "patient" I often forget how MS directly impacts my "caregiver", my husband Mark. On a daily basis, between exacerbation's, life goes on for us as "normal". It's DURING and immediately following an exacerbation that the caregiver needs extra support as well. After all, I become (for obvious reasons) pretty caught up with how it's directly impacting MY life and in all honesty, tend not to seriously think about how it impacts Mark. Sure, I can tell when his stress level is too high (what wife can't?!), but as far as really being sensitive to how he is coping with things during the actual exacerbation, it doesn't happen. That being said, it's not in my "wiring" to be a whiner or a complainer. In fact, I tend to isolate myself. So, at least Mark is spared that. If anything I think his frustration during an exacerbation is based primarily on the fact that he can't stop or prevent it. Nor can he take away the side effects of treatment. I will however be honest when I say that when Mark IS frustrated with ME, it's generally because I'm being stubborn and pushing myself too hard. (That goes back to the not wanting to be a burden). The key on both sides is communication. (Sadly, not a strong point in a lot of relationships. Add a challenge to the relationship and this becomes VERY apparent). Mark and I do A LOT of talking. It's not always easy. Sometimes the MS makes it hard for me to find the right words. (Try telling someone how your feeling about something and your brain won't give you the word). Sometimes it's my frustration and anger over the disease that makes it hard to open up. I can't answer for Mark, I won't even try, but I'm sure that there are times when trying to get what he's feeling or thinking across to me isn't easy for him either. I can't imagine what it would feel like to watch someone I love go through this, and not being able to "fix" it. I imagine I'd experience every emotion out there. Anger, sadness, grief, frustration, depression, every one of them. I would imagine there would also be times where the feeling of being overwhelmed would be pretty powerful. In other words, every emotion I feel as an MS patient, I'm sure my husband feels as a caregiver. So, how do we deal with it? How do we prevent stress issues, both caregiver stress, MS stress and day to day living stress for becoming a problem? It's not easy. It's one day, one exacerbation at a time. It's CONSTANT communication. We TALK. We devote an hour each day, every day to communication. No TV, No phone, No distractions. As Mark travels on business every week we have that hour by phone EVERY night he's gone. The same time every night. No exceptions. Is every night's conversation "heavy" NO. That's not the point of the hour (which often becomes 2-3 hours even on the phone). The point of the hour is that it's OUR time. Face to face (or ear to ear) uninterrupted attention given to each other. Our time to "reconnect' after the hustle and bustle of our days. Our time to focus on the most important person in our lives, each other. We know that if we do this, communication flows freely and it's much easier to talk about any POTENTIAL issue before it BECOMES an issue. Another thing I can't recommend enough. The caregiver and patient need outside support. When you are faced with a life altering disease attending a support group ought to be a requirement! Both for the patient AND the caregiver. No one understands what Mark goes through better than another caregiver. No one can support him, encourage him or point out another way of thinking in dealing with a loved one with MS better than another caregiver. Same for MS patients. As a fellow MSer you've heard the fears whispering in your ear. You know what they sound like and what they say. No one can tell an MSer to stop feeling sorry for themselves and get away with it like another Mser! (We ALL need to be told that now and then. It's OK to allow yourself an infrequent "pity party now and then, but then you need to snap out of it. Pull yourself up by the boot straps and move forward). So, my suggestions: Work on communication and get active with your local MS support group! BOTH patient and caregiver!

A funny thing happened on the way to middle age....

One day your 18, graduating high school and you have your entire life before you. Your head is filled with all the wonderful things your going to see and do. Your going to change the world! After all, the generations who came before you OBVIOUSLY had no idea what they were doing or the world wouldn't be so screwed up! YOUR going fix all that! Time goes by, you start a job or college. You celebrate a birthday or two. Have your heart broken, find REAL love. Perhaps have your heart REALLY broken. Experience loss, get married. Have babies (and with babies comes the first REAL taste of fear), lose a job. Get another. Through it all we are undergoing a constant process of change and growth. We go from "knowing it all at 18 and boy, are my parents stupid" to realizing that we really don't know a heck of a lot at 40! At 45 you start wondering WHY? When your parents were 45 THEY seemed to have it all together and had the answers. You lok at yourself and realize that you don't. You look at your life and wonder, "Isn't it SUPPOSED to be getting easier by now"?!? That's when I take a deep breath a re-evaluate. The heck with MS. I'm not even THINKING of MS at this point. I'm re-evaluating my LIFE. Refocusing so I can get back on what ever track I've wobbled off of. Usually, I find the track I've "wobbled" off of is the JOY track. Come on, you remember that one. The JOY track! The one that your on when you have such a belly laugh that you rush to the bathroom in order to avoid peeing in your pants! Think back now. Has it been that long?! (Looks like I'm not the only one who needs to do the occasional re-evaluating)! My son re-introduced me to the "JOY track" during a phone call yesterday. My son and his wife are expecting their first child in early February next year. My son is in his mid 20's and a pretty level headed man if I do so so myself. (I'm awfully proud of the man he has become). Anyway, I answer the phone and am greeted with, "This grandchild of your is getting pretty expensive". No, Hi Mom how you doin? Nope, right into the meat of what was on his mind. LOL He was completely serious and had called his mom for emotional support. Me being the wonderfully supportive mom I am, immediately started laughing, stating, "Welcome to the next 18 or so years". Of course at the same time my mind went back to the days when it was his father and I trying to make ends meet with one baby and another on the way. Trying to make ends meet and figuring out how to make a dollar stretch. I told my son that while he may be a bit nervous now, everything WILL be OK. I also told him to enjoy this time, as it will go by so fast. I shared stories with him during that call of his father and I struggling to make ends meet. Yet, I told him, THOSE were the BEST times. At the end of the conversation, he was more relaxed and laughing. I hung up the phone, lost in my own thoughts. Remembering how wonderful, crazy, stress filled and love filled my life has been through the years. Now, I am having the wonderful opportunity to watch my son experience the same experiences I had. I get to watch, laugh and reassure and enjoy. I realized that a funny thing happened on the way to middle age.......I've REALLY had a great life. One, God willing, I'll continue to enjoy for many, many years.

Tuesday, July 29, 2008

Don't Sweat The Small Stuff

While MS controls a part of my life. MS ISN'T my life. There's a whole lot more to living than MS. I try to keep it all in perspective. It's actually really easy for me to forget that I even HAVE MS. Other than making sure I take my pills four times a day and my shots 3 times a week, unless I'm having a "symptom" day, each day is like another. Adapting to the mobility changes and other issues that MS brought occurred over time. So, while getting up and around tends to be slower, reaching for the cane when it's needed is automatic, not requiring active thought. With the realization that I didn't have to focus on limitations came more change. My focus was turned outward. This once again allowed me to focus on the important things in life and LIVING, instead of the internal fears that were whispering. It also helps keep the "pity parties" at bay. Like everyone else I worry about family, friends, my job, building my business, bills. The day to day hum drum of getting through each day. Finding time and there never being enough. Visiting with friends. ALWAYS searching for more quality time with my husband. Yet, these are the worries I WANT to have. One thing about MS, it sure changes "worrying" and really brings home the saying, "Don't sweat the small stuff".

Monday, July 28, 2008

Chapters One and Two.....what MS has taught me.

I wouldn't be who I am if I didn't continually seek to find the positive in every experience. It's just the way I'm "wired'. I truly believe that every experience we are Blessed to have, be it positive or seemingly negative, ultimately brings about good. Whether the "good" means learning to allow others to help you, learning patience with yourself or others, or simply having your priorities refocused as a result of hardship. It doesn't mean the experience was any less painful getting though, but it's the learning and acceptance of the lesson, that for me, somehow makes the journey bittersweet instead of just bitter.

That's the way I look at my journey with MS. Prior to MS I was a very independent person (Well, I STILL am, just a kinder, gentler version....right honey??), who had a very difficult time accepting help from anyone. Even family. After all, I was tough. I could weather any storm (and boy I had weathered some big ones) on my own, figure out my own problems and besides, wasn't accepting help a sign of weakness??? My focus was on having a secure career and being financially independent. Then....WHAM.....MS.

Suddenly, life changed. Nothing was as it appeared to be. As it was SUPPOSED to be. My life suddenly became two distinct and different chapters:

Chapter One: Life Before MS.

Chapter Two: Life After MS.

Wait....Life AFTER MS? Doesn't that imply that MS goes AWAY? HAH! Let's try that again:

Chapter One: Life Before DIAGNOSIS of MS.

Chapter TWO: Life After Diagnosis of MS. (Sub titled: Trying to live your life and not allow the absolute fear of becoming a burden on those you love consume your life).

(OK MS may have "tamed" the independent streak but I never said it tamed the sarcastic sense of humor....I hope it never does)!

In the midst of exacerbation's, shots, TWF, I.V. Steroid infusions, falls, canes, walkers, MD appointments, etc., etc., etc. MS has taught me many things:

It taught me patience of self and others.

It taught me that as I have loved unconditionally, others have loved me. I just never allowed them to show it.

MS taught me that by allowing others to help, it actually helps THEM deal with my disease.

Most importantly, MS taught me that leaning on others doesn't make me weak or a burden. It makes me HUMAN.

Finally, and perhaps the greatest lesson MS has taught me: The greatest gift we can give to those who love us, who watch us literally stumble and fall, is to LET them HELP. Being there for you when you stumble, reminding you to take your shot, or gently telling you to sit in the recliner and rest a bit is their way of saying, "I love you, I'm here".

For me, MS hasn't just taken things FROM's GIVEN me things too. Better perspective, patience and a much deeper appreciation for family and friends.

Energy conservation and TWF

What a difference a day makes! I feel 100% better than I did yesterday. I slept well and woke with a wonderful energy level.

Of course, I'm also aware that this "energy level" is something that must be nurtured and taken care of. Utilized in small measures and rationed. Before I learned that, I would bound out of bed, thrilled to be feeling "normal" in terms of energy. I'd cram as much activity as I could in the shortest amount of time. Run all my errands, clean the house, throw some laundry in...and the result? MAJOR crash and burn. TWF (Train Wreck Fatigue) would roll into the station and take me out with it. It would take me DAYS to recover.

Now I know. Pacing myself is the key. When my mind and body thinks I have the energy to do four things...I do TWO. Then rest. A few hours later, if I feel I have the energy to do three things, I do ONE. I find the energy I have lasts longer and I'm actually more productive. Instead of trying to cram everything in before the energy runs out, I take my time and get things done without TWF arriving.

Of course, this is MUCH easier said than done. Especially if you have a family and work. (I have a wonderfully supportive husband, a full time job and am building my own business). So, how do you manage it all? Conserve energy, avoid exacerbation's and LIVE your life??? Good question. My answer: Through Faith, Hope and the love and support of family and friends. Some days are better than others. Thankfully, I have many more good days than not.

Sunday, July 27, 2008


Finally, my body is over the worst of the steroid side effects and I'm am starting to feel "normal" again. For me, IV steroid treatment simply kicks my behind. Now, I'm left with the residual heartburn (on a scale of 1-10 it's now a 2 where Friday it was around 125) a little GI turbulence, FATIGUE and the introspective thoughts that dance in my head. Piece of cake!

During my journey with MS, one vital lesson that I have learned (and it was actually the hardest) is the following: While my body takes the time it needs to heal after an exacerbation, my mind also needs time to come to terms with the exacerbation and do some healing. (Why does your mind need to heal you ask? Think about it for a minute. One day your "OK" the next your leg doesn't support your weight, your vision is blurry, and suddenly your slammed with the fear that THIS is the exacerbation that takes your mobility, your vision, etc.)!

The body part is easy. It heals or not, automatically on it's own. No extra action or effort required on my part. The mental/emotional healing, well, let's just say in the past it was easier not to deal with it. After all, takes work, forces me to face fears and doesn't allow me to deny what occurred/is occurring with my disease. It took me awhile to learn how important it is to do the work of the emotional healing. It was far easier just to ignore the FEELINGS I would have during and after each exacerbation. I would just move forward, one foot in front of the other and go on. Yet, I really wasn't "going on". Not dealing with what was happening was denial, plain and simple. It then made any "bump in the road" all the more difficult to deal with instead of easier.

As a result, I learned that it's only when I face all the emotions and fears that raised their ugly head that I REALLY heal and begin the process of moving forward and re-claiming my life. While it may appear to be easier, NOT dealing with the emotional aspects of MS will actually hinder physical healing and well being. It also makes it MUCH more difficult for those who love and support you to help and understand what your going through. After all, when I erect emotional barriers because I can't face MY fears, how can my loved ones help me? That barrier I erect trying to "protect" ME from my fears also keeps those who love me at a distance. Not to mention not turning to God and asking for the support and guidance I need. So, in effect I'm cutting off my own sources of help and support. Not too smart.

So today, as I spend time realizing that I'm feeling better and a bit stronger. As I realize I have in fact, come out the other side and the exacerbation is behind me, I will spend part of my day working towards the process of emotional healing. Facing the fears that whispered in my ears. The voices of the whispered fears with this exacerbation, at times, were as loud as to be shouts. While they are no longer shouting, the faint whispers are still there. Stirring up fears of "next time". THOSE whispers are the ones that if allowed to continue and aren't silenced create the barriers and impair healing. So, today I will face those whispers. Confront them head on and silence them. I will tell the fears that yes, in all probability I will have another exacerbation at some point in time, it may be mild, it may be worse. I may also NEVER have another. I will silence the whispering when I tell them that I refuse to live the DISEASE as I choose to live my LIFE and embrace the joy of each day and experience.

Take the time to silence the whispered fears in your journey as well. (No matter what your "journey is" be it called MS, Cancer, Depression or personal struggle). Embrace the joy you see in each day, take on each challenge knowing that ultimately every challenge you weather makes you all the more strong. When you overcome a challenge and silence the whispers of fear, take the time to savor the feeling you have at the moment of realization, "I'm on the other side. I made it across." Know that each day is a fresh start filled with HOPE. Hold on tight to your Faith, your beliefs and the love and support of family, friends and even complete strangers.

Saturday, July 26, 2008

Heat, MS and Attitude.

Ahhh...summer. Family gatherings, BBQing with friends, outdoor activities and HEAT. For people with MS, summer also means experiencing more symptoms. Not all MS patients are affected by the temperature, (remember NOTHING is absolute, and not every patient has every symptom or problem) but quite a few are. In fact, heat sensitivity is a very common thread in MS. Hot tubs, humidity, stuffy rooms, and even a fever can cause symptoms to flare. For me, too much heat, my left leg is affected along with my hands. Balance becomes an issue and I tend to start dropping things much more readily. Fortunately, most of the discomfort can be minimized or avoided all together.

The most obvious way to avoid heat related symptoms is to simply stay indoors in an air conditioned environment when it's hot. Plan your outdoor activities and errands in the morning or evening hours when it's cooler. If air conditioning isn't available make sure you keep windows open for air circulation and use fans if at all possible. Take cool showers or baths. Before you get into your car on a hot day, start the car, turn the air on and let the interior cool down before you get into the car for your drive. Make sure you drink plenty of fluids throughout the day EVERYDAY no matter what the temperature is. Being dehydrated makes it more difficult for your body to regulate it's own temperature and more likely other health problems as well.

There are also devices available such as cooling vests that can be worn to help keep your body temperature down. I've added a link to a few sites for you to review regarding cooling vests as well for a link for a web site for active MSers.

For exercise try swimming. You won't overheat in a pool! Just remember to wear sunscreen!

Remember, it's important to stay active. It keeps us moving and healthy. The biggest challenge most of us will face when dealing with MS is our OWN ATTITUDE. It's easy to get frustrated when you can't do what you want to do, when you want to do it, or how you USED to do it. It's hard to accept that we may have a new limitation or challenge. However, it's really about mindset. You can still do the things you enjoy doing, you may just have to do them at a different time of day or in different way.

You do not have the ability to control your MS, but you DO have the ability to take control of HOW you deal with MS and that starts with a basic conscious decision. YOU make the decision to live your LIFE or live the disease. It's that simple and that complex.

Focusing on the positive...

NO STEROIDS TODAY! Which means that by tomorrow I'll start feeling better, sleeping and stop slugging back the Maalox! Thank goodness this was a "short" three day blast of steroids instead of the regular 5 day course. It's done and now my focus is on feeling BETTER as each day passes. Of course, it's too early to tell how effective this course was, but as always I'm optimistic ;0)

I'm going to spend today doing some reading on both "traditional" MS Research and treatments as well as "non-traditional" while my body rests up. I'll blog my findings later!

Friday, July 25, 2008

Final Infusion in Series

Thankfully this morning is the final infusion of a short series. I'm tired, irritable, my heart pounds on exertion, I have zero attention span and have steroid heartburn from Hades. Now just waiting for the other GI effects to start. Can you say Maalox anyone? Today is definitely a "not fit for human company" day. Personally, for me, THAT is the worst part of the steroid therapy. When the physical effects of the steroids hit combined with the irritability. I deal with it by isolating myself. That way I'm not being not so nice to anyone. Thankfully, Mark has seen me through enough steroid rounds that he knows what to expect and knows that I isolate myself so I don't subject him to ME during this phase. (He's probably EXTREMELY grateful that I DO. LOL).

Enough whining.

Dealing with medication side effects is often the most challenging aspect of being treated for ANY medical condition. Weighing the discomforts of the side effects vs. the benefit of the treatment. I faced the same dilemma the last time I was on Rebif. I lasted 3 months on the treatment before I simply couldn't tolerated the side effects anymore. (I had a terrible time with the "flu like" symptoms. High fevers, total body aches, malaise etc. It got to the point that I didn't think I was going to be able to continue to work. That was when I switched to Copaxone. Did very well dealing with the minimal side effects I experienced on the Copaxone. However, it wasn't as effective for me with not only helping prevent exacerbation's, but the severity of the exacerbation's were increasing as well). I re-started the Rebif month ago. As Rebif is a medication that you titrate the dose up over a month period, my first full strength injection was last night. So, in addition to dealing with the steroids, my body is also dealing with a bit of a fever today. Yep, not fit for human company. Anyway, I digress.

Back to weighing side effects vs. benefit. This is where I focus on weighing side effects vs. benefits. Steroids, as I have stated in a previous post, I try to avoid at all costs. It's a personal decision for each of us. One where no matter what the health issue we have to come to our own point of deciding that either the benefits of treatment out weigh the consequence of the disease progression or the treatment side effects are taking too much away form our quality of life. We each come to a point where we feel "we have no choice".

For me, the decision to take the steroid treatment (that I know is going to be a challenge) is when the vision issues start or when an exacerbation continues to progress to the point where a previous "inconvenient" neurological symptom becomes severe enough to interfere with my daily life's activities (like requiring a walker to walk for balance issues). Or, a new "symptom" appears which is significant enough to be more that an "inconvenience". That's what happened to me in late June. After I experienced a major stress in early June about 10-14 days later an exacerbation started. This exacerbation started the way MY exacerbation's typically do. My balance started subtly deteriorating and my hands forced me to use plastic. However, a new symptoms reared it's head, and it was ugly, and scared me as it progressed. I started forgetting things. I'm not talking about things like where I put my keys. It started innocently enough. I misplaced one of my cordless phones. Heck, we've all done that. No biggie I have two. Unfortunately with my hearing I can't discern WHERE sounds come from with the implants on, so when it rang I couldn't locate it. Mark was out of town, (had just left) so I was on my own. Then, I misplaced the second one. Never, done that before. I was just frustrated with myself, and still didn't realize that I was having a cognitive problem. I didn't realize something was really wrong for a few more days. I started doing odd things. One day I was going to make bread. I got the yeast out, measured the water. Then for some reason not only did I stop the entire process but when I went back into the kitchen I couldn't remember WHY I had the yeast and measured water on the counter. Things like that continued to occur. Mark came home after a few days and located the phones. We had a laugh over the phones and discounted it. However, now I was starting to have "not so subtle" balance issues. Was back to using the cane full time, and as I had taken a non-MS related fall in Mid May and was till (and still am) recovering from that, I was terrified of falling again. However, me being me, my "point" of contacting my MD for steroid treatment hadn't been reached yet. That point for me in June came when Mark went out on an errand and I needed to call him. I picked up the phone and couldn't remember his cell. No biggie, it's programmed in my Blackberry. Only when I picked up my Blackberry I couldn't remember how to use it. For those who know me, you know I've been a "crackberry" user for about 6 years and am a "techno geek". THAT was the moment I knew I was in trouble with the MS. It wasn't misplacing the phones, forgetting to complete processes, constantly forgetting what I was in the middle of discussing during a conversation or even having trouble finding "words", (all of which I had been experiencing). It was not being able to remember how to call Mark on my Blackberry.

Having this experience was actually a real blessing though. Like the majority of MS patients, my number one fear of the disease has been the potential loss of mobility and independence. Not anymore. My number one fear changed in an instant. God, I prayed, PLEASE don't let this disease take my mind. It was as if God in his infinite wisdom chose to show me that he COULD allow me to keep mobility but allow me to lose cognitive skills. Which, for me, would be more difficult. THAT sent me to my MD. Mark of course went with me, as now it was clear something was VERY wrong. As I have said previously, I have a wonderful physician here. Dr. Susan Hall. She practices what I call "old fashioned" medicine. She actually pulls up a chair, sits, and will spend as much time as she needs talking and LISTENING. Mark was a very active participant in the conversation, as I couldn't remember enough of what had been going on to really give her accurate time lines. Of course, I was so much more fearful of the cognitive problems than the balance, but the balance was a big enough issue for the walker to be discussed for the first time.

This is where God amazes me. Honestly, if I had gone into Dr. Hall's office and she brought up the walker and the balance was the ONLY issue that I was having problems with. I would not have handled it well. Remember, loss of mobility for me was my worst fear. When the walker was discussed, I clearly remember saying, "Fine, let's just fix my brain". My instant new perspective became, "I'll still be mobile, I'll just get around a little differently, but I NEED my mind to function".

I started on Aricept right away and Steroids on June 26th (Insurance approval and home health coordination took 3-4 extra days. Insurance issues would require a completely separate blog)!

Symptoms don't immediately improve during or following steroid therapy as it takes time to see if the myelin sheaths will regenerate. About the time I WAS seeing improvement with my balance (I was using the walker part time and the cane the rest of the time) I started having blurred vision with my right eye. THAT was emotionally tough. It meant I would be doing another round of steroids less that a month after the previous round. However, vision issues are a firm "set point" for me, so I called Dr. Hall.

So, here I am infusing the last dose. A month after starting the Aricept my memory has just about returned to "normal" I still have isolated incidences of being challenged with losing the thread of a conversation or finding the right word, but I remember how to use my Blackberry! I now only use the walker in the morning or when I'm going to be out and about walking a lot. I don't know if I'll be able to get off the cane completely, time will tell, but that is no longer a concern at all. Now even using the walker doesn't bother me. Loss of mobility is no longer a fear. (Thank you God).

Each of use has challenges we much face in our lives, some seem to be challenged more than others. Be they health, financial, marital, job related etc. My challenges are no greater than yours, no more difficult, no more of a heartbreak at times. I do know, that there are three things that get me through my challenges. God and the absolute love and support of my family and friends. I am so incredibly blessed. I can't help but wonder about and pray for those who don't have ALL of those things. Especially faith. Life is tough enough to get through WITH faith. I can't imagine those trying to get through life without it!

Thursday, July 24, 2008

Infusion day two.

Well, the steroids were successful in keeping me up all night. As I sit here infusing dose #2 I know that the chances of sleeping tonight and tomorrow are just as likely. Which means that Saturday will be my "crash and burn day". If insomnia are the only side effects I experience this round, I'll be thrilled.

So, I did more on line reading last night. Added to my suggested reading list on the blog and cooked. Made a pot of homemade split pea soup for Mark when he get back into town this evening. At least he wasn't home last night to be disturbed by my "puttering". Only Maggie and Valor had to put up with me. Although Valor is getting so old now (9) that after 11 p.m. he takes himself off to bed, no longer following me from room to room. Maggie however, being by nature as a cat nocturnal, loved following me everywhere all night. For her, that was a treat. Although even she gave up and I found her curled up on the top of her kitty condo about 4.

Thank goodness for our animals. They are such wonderful company and always seem to sense when things aren't "right". As a nurse I was excited to see the movement towards utilizing animals in the hospital and rehab settings as "therapy". Studies have shown that the mere act of petting an animal for just 3-5 minutes lowers blood pressure and releases endorphins. Both very positive things for maintaining a healthy balance. There are few things more soothing when I'm not feeling well and not fit for human company (especially during steroid therapy)than having Maggie on my lap and Valor at my feet. So, my advice.....get a pet! be it cat, dog, bird, fish or reptile! (Note I DIDN'T say SPIDER)!

Steroid insomnia

One of the biggest side effects of IV steroid treatment for me is the steroid induced insomnia. It would be great productive time around the house if I had the energy and the hip/pelvis felt better! So, I try to be productive by keeping up with the latest MS research on line.

As a matter of fact, during tonights reading I read a new research report that came out this week. The research showed promise with using stem cells with mice to regenerate myelin sheaths. Way to early to tell long term success, but it would be wonderful. Destruction of the myelin sheath is what causes the "symptoms" of MS. If the myelin sheaths can't/don't regenerate because of the severity of damage to them caused during an exacerbation, then the damage and "symptoms" are permanent. That's what ultimately leads to disability. If they can find a way to stimulate regeneration of the myelin sheaths the potential for total reversal of permanent damage and disability becomes a real possibility.

Of course really finding out the absolute cause of MS would lead to the ultimate cure....prevention. Currently, MS is treated symptomatically and through the use of drugs that attempt to modify a persons immune system/response. Thereby attempting to lessen the occurrence of the actual exacerbation's while treating the "symptoms" that an MS patient already has. Such as muscle spasms, balance issues, bladder and bowel problems as well as cognitive and visual problems, among others. A person can have a range of health and physical challenges related to MS. Some patient's have one symptom, while others have just about all of them. The severity can range for a mild "inconvenience" to life altering.

Generally, I'm pretty lucky. On a day to day basis, between exacerbation's, unless you knew, you wouldn't know I have MS. My balance may be a tad "off" but that's easy to excuse by saying, "I'm just tired". (Which is usually TRUE). If my speech is off, that's even easier to pass off as non-MS related as a deaf person! LOL.

The biggest challenge for me on a day to day basis is the "Train Wreck Fatigue" that MS brings. This fatigue is indescribable. You can being feeling good with an energy level that is "normal" for you. Then literally the next second you are absolutely exhausted. I have actually had to leave a restaurant before eating my food because between ordering and eating it hit. When it hits you can't function. You have no choice but to sleep. The fatigue is one of the main reasons people with MS end up being unable to work. Fortunately, I haven't had too many encounters with "Train Wreck Fatigue", but Mark (my husband), can tell you, it's very real and your body gives you absolutely no say in the matter. Of course, the pace I keep in my life with the job I have and the hours likely helps contribute to it.

However, I've also been a firm believer that staying active helps keep MS under control. It also keeps my mind OFF the MS and on LIVING. I made a conscious decision years ago to live my LIFE and NOT live MS.

Wednesday, July 23, 2008

First infusion done......

Two more to go in this series. The good news is that by the nature of what the steroids do, they will also reduce the inflammation in my hip/pelvis so by tomorrow evening at least THAT will be feeling better! YEAH!

You'll see I added an "MS Reading List" to the blog. These are books that I've read that helped me in my quest for answers, alternative therapies and treatments. Also books or articles that helped motivate me and gave me encouragement. I believe that no matter what the health issue we're facing we owe it to ourselves to be as knowledgeable as possible about treatment options, and not limit ourselves to "traditional" therapies. What works for one person may not work for another, but we owe it to ourselves to keep up with the latest research etc.

I'll also be posting a lot of educational information here. Latest research findings and any other information I come across. If you find something interesting, please post me a note. I'll see what I can find out and post the information I find.

Time for my veggie/berry juice!

IV Steroid Treatment Begins...again

Round two of IV steroids in less than a month. Thankfully, this time I only had to be stuck twice to get the IV in. (I'm a tough stick with veins that are deep and move). At least I only have to do three days of infusion instead of the typical 5. Hopefully that means the side effects won't be as bad. As long as it stops whatever is going on with my right eye. That's all that matters.

More later.

Exacerbations Suck...

Now, nothing is the same. Now, exacerbation's suck. My exacerbation's all seem to target specific areas. The same areas every time. The left leg and foot, both hands, my balance and my right eye. Occasionally my speech is also effected, but not always. I've always considered those problems to be simply "inconvenient". The problems are always present to some degree as over the past few years each remission following an exacerbation brought less return to full function.

However, it really wasn't that big an adjustment, because it was so subtle. It wasn't like I would have an exacerbation and there would be this big difference. While during the actual exacerbation there would be noticeable changes, within 2-4 weeks everything "settles down", the exacerbation winds down and I try NOT to focus on the struggles I had during the acute phase. I simply wait to see what returns to "normal". This tends to be the hardest part for me as patience definitely isn't one of my strong points! (It takes 4-6 weeks for the myelin sheaths to regenerate. If they are going to. If they regenerate, function returns. It's when they don't that the residual problems result. Permanent damage to the myelin sheath means that the nerve impulses can't get to where they need to be. That's what really causes the problems. The impulses are needed to send the messages from the brain to the muscles to move). For me, things like being able to use chop sticks when I had sushi started becoming more challenging (I STILL try to use them just means I leave rice behind and use the fork). Dropping things like silverware and pens and trying to pick them up became more challenging because my hands simply aren't as coordinated as they used to be. I've found that using thicker pens makes writing easier as sometimes holding a thin pen is a challenge. It means I have to be more conscious of how I move so I don't end up on my face :0) and I use plastic glasses to save on glassware if I'm having a "bad hand" day.

I usually don't call my MD for treatment of an exacerbation unless I start having vision problems. I know this often frustrates her as by the time I call her, I'm well into it. However, while I'll try and just "get through" an exacerbation, the first time I notice blurred vision or pain with my eye (it's always the right eye), I'm on the phone. I won't risk the eyes. I just know that the only way to stop a serious exacerbation is treatment with high dose IV steroids. NO FUN. While I think I'm a pretty tough cookie...steroids lay me out. I try to avoid them at all costs, but I also know when I can't. Hence the second round of steroids in less than a month begins in about 9 hours.

There is so much mystery to this disease. They don't know what triggers it, or how to stop it. I do know that I absolutely have to watch my stress level. I know that if I'm under a lot of stress I run the risk of an exacerbation. The trick is trying to find balance. Not always easy in the world we live in. Bad things happen, we push ourselves too hard, don't get enough rest and get run down. We worry about things. Unfortunately for patients with MS, that often means a "double whammy". Dealing with whatever the stress is in your life and hoping that your managing it so your immune system isn't triggered to start attacking your central nervous system. Easier said than done, especially for Type A's. That's when "Train wreck Fatigue" (a term coined by my Sister-In-Law MB) sucks the Type A right out of you. But that's a whole topic unto itself.

Well, I think it's time to call it a day. Tomorrow is another day........

In the beginning.....

Years ago, before my diagnosis, my kids would refer to my "phases". "Mom's going through her klutzy phase again". I'd go through cycles where my hands just wouldn't work. I dropped everything, tripped over my own feet. Broke more glasses and plates than you can imagine. Then, as mysteriously as it started, it would stop. Everything went back to normal. There was never any residual neurological problems. By the time I'd get in to see a Doctor, everything was fine again. I was just a klutz. The only real "problem" I had was that I was less able to tolerate heat. In my younger days I lived for the beach and sun bathing. I realized that I could not longer tolerate the heat. The hotter it was the "klutzier" I got. Heat seemed to suck all my energy out of me. So, I adapted. I avoided activities that took me outdoors when it was hot. Easy. No big deal. It was merely an inconvienience. Life went on.

Tuesday, July 22, 2008

What is MS?

Multiple sclerosis (MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms can range from mild, such as numbness in the arms and/or legs to severe, such as paralysis or loss of vision. The progress and symptoms of MS vary, often greatly from one person to another. Some people only have one isolated MS attack and have no residual problems. Others, for unknown reasons continue to have attacks (exacerbation's) and require close medical monitoring and daily medication. Most people are able to work, remain active and healthy. Others become disabled. At this time there is no way to tell who will become disabled and who won't.

MS is not contagious and is not directly inherited.
Most people with MS have a normal or near-normal life expectancy.
The majority of people with MS do not become severely disabled.

There are 4 types of MS.

Relapsing-Remitting MS (RRMS) Approximately 85% of people with MS are diagnosed with this type of MS. People with this type of MS go through very specific "attacks" (also called flareups or exacerbation's). During these periods they have neurological deterioration. Often following an exacerbation (remission) they are able to return to their prior level of neurological function with little or no permanent damage.

Secondary-Progressive MS (SPMS) After being diagnosed with RRMS, many people develop secondary-progressive disease. At this point they don't know why and there is no way to predict which people will develop SPMS. In SPMS the disease worsens more steadily, even without a person experiencing further exacerbations.

Primary-Progressive MS (PPMS) Approximately 10% of MS patients are diagnosed with this form of MS. It is progressive right from the beginning without periods of specific exacerbations and remissions.

Progressive-Relapsing MS (PPMS) Fortunately this is a rare form of MS (5%). This is a steadly progressive form of MS, right from the beginning.

Fotunately, there are many treatments available. While there is no cure for MS, the treatments available help those with MS treat symptoms, help diminish the severity of exacerbations and maintain a better, more active quality of life.

Today My Blog Begins

I decided to start this blog as kind of a therapy for myself. I have been experiencing the worst MS exacerbation I've ever had. Actually ended up walking with a walker. Am now back to the cane, and trying to go without that when possible. Finished a round of IV steroid treatment 3 weeks ago, and am now about to begin another round due to vision problems with my right eye. In order to avoid sinking into the pit of black despair that has become more difficult to fight, I've decided to blog. I simply refuse to continue to throw the pity party for myself that has been beckoning.

Normally I have at least 6 months, if not longer between exacerbation's. Not this time. This exacerbation was precipitated by a fall and then a stressful event that foll0wed the next month. Usually the exacerbation's start with an increase with balance problems, muscle weakness with my hands and left lower extremity. Sometimes they are minor and resolve on their own. However, I know when the eyes start getting involved it's time to get to my MD. (I have a wonderful physician Thank God). The physical symptoms with this exacerbation are worse. This is also the first time that I had some pretty scary cognitive problems as well. The decision was made to make some changes to my medication. Add a new one, and go back on Rebif. I was on Rebif a few years ago but the side effects were pretty severe for me. BUT, the exacerbation's were a lot less frequent for me than they were on the Copaxone.

Now, facing another exacerbation so quickly after the previous one my level of frustration is pretty high. My sense of "self" is also being hit pretty hard. I feel like a complete burden right now. Not being able to work is emotionally devastating for me. Working is very much tied into my sense of independence and very much part of who I am. I know, I family, friends and especially my husband DON'T feel I'm a burden. My husband would be the first to tell me that. I'm fully aware that it's an internal perception and very much part of the black pit of despair I'm battling. Yet, it's a very real feeling. However, like Scarlet said, "Tomorrow is another day". So, for today....I take one moment at a time. Try to focus on the positive and see what the day brings.