My Journey with Multiple Sclerosis

Infusion Day One

2011-08-25T13:46:00.000-07:00

Infusion's started. This time I'm only doing 3 days of infusions instead of 5. Thank goodness. I thought it had been longer since my last round of infusions, but found out today the last go around was in April Only 4 months ago :(

Thankfully, my home health nurse was able to get the IV in with only one stick. MUCH better than the 12 of last time. The infusion went well. Tastes terrible as always. Thank goodness for Jolly Ranchers hard candy. Help hide the taste.

Now I have the usual post infusion headache. Don't feel too jacked up. I know that feeling comes later. The steroid fog is already descending as well. I hate this stuff.

Another exacerbation

2011-08-24T13:10:00.000-07:00

Here I was thinking things were going so well. Actually, they were. Until Saturday when I started having vision problems and pain in my left eye. I sucked it up and was hoping it would go away......my husband ratted me out to our family Doctor though. Set me up an appointment and in I went. Knowing full well what I would be told.

I have optic neuritis in both eyes. Now waiting to hear from the home health agency to see when they are going to start my infusions. The doc wanted them started today. Doesn't look like that is going to happen. Haven't even heard from the pharmacy regarding IV delivery.

So, I wait.....bad attitude and all

Still here

2011-08-14T09:56:00.000-07:00

Wow. I hadn't realized it had been so long since I blogged. The summer has simply flown by. Fortunately, not too many issues with the MS this summer. )BIG difference from previous summers). I've been staying home with the exception of a planned vacation, so I'm sure it's the air conditioning that made the difference.

Dad is doing better. Made a trip to visit he and mom this summer. While the heat of the mid-west this summer has been hard on him, he's been holding his own.

I hope the summer has been good to all of you. You can continue to follow me on HowIfightMS.com See you there!

busy, busy, busy

2011-03-23T15:05:00.000-07:00

Wouldn't it be great if MS took a break when life got tough? We've been dealing with a stressfull family issue for the past 6 months (my pop has been really sick). As if it's not bad enough to deal with that level of stress I had to do my best to conceal my returning MS symptoms from my family. All my family need was to worry about me as well. So, I kept on pushing myself. Past the wall of MS. I think I did fairly well. There was only one day that I was there (in two weeks), that I allowed myself to succumb to the train wreck fatigue that comes with MS. Other than that one day I waited until I got home to really let myself go. I hit the bed and didn't get out of it for three days (other that for a doctor's appointment the day after I got home. I am so tired of MS controlling my life. The meds, the shots, the balance problems, the cognitive issues, the fact that I often have hard time speaking. UGH The list could go on and on.

Fire's Back

2011-02-25T09:17:00.000-08:00

I take 12 pills a day (Not to mention my shot) to keep my MS symptoms at bay. We'll they aren't working. The neuropathy in my legs (FIRE) is back, my fatigue requires a daily nap and my hands aren't working right. In addition to joint pain (and of course the back pain that I battle on a daily basis due to an injury almost 3 years ago). I'll tell you, life with MS sure isn't for the weak or the faint of heart. The risk of falling flat on your face (literally) is always a possibility as the disease progresses. My wheelchair and walker have become my best friends. Thankfully my human friends have accepted my D.M.E friends and aren't intimidated by them. That makes a world of difference. I've read blogs where people have lost friends because their so called friends can't accept watching them go through the process of MS and using the equiptment. Thankfully, I haven't had that problem. My friends get me out of the house once a week minimum for lunch, dinner etc. They have become pro's at handling my wheelchair and walker.

SO while my symptoms are flaring up I choose to concentrate on the positive.......my wonderful friends who make sure I am STILL able to have a life outside my home.

Been awhile

2011-02-07T18:26:00.000-08:00

It's been awhile since I blogged, but life has a way of throwing you curve ball's and making other issues in your life the priority. The last 6 months of 2010 my dad was pretty ill. I spent a considerable amount of time there during the end of the year.

Then of course, I had an MS flare up in the midst of it all, then I'm still fighting my chronic back pain and jumping through way to many hoops to get it fixed.

I hope you all have spent the last six months in better physical health than I have. I underwent a round of IV steroids as well as steroid eye drops for another round of otic neuritis. Just when I though I had the chair beat, back into I was. (I'm back up to using the walker, but it's iffy most days).

I rarely have a day that I don't have the consious thoughts of MS running through my head. I remember when the symptoms of MS, for me, were so mild that after my daily shot, MS was an after thought. I hope I see those days again!

Gilenya outrage...

2010-10-06T14:16:00.000-07:00

As with other MS patients I have been eagerly awaiting the availability of Gilenya. I'm sure you've heard of the drug. The new ORAL MS medication approved by the FDA very recently and available this week in the US by prescription. I was very excited, as was my entire family to hear that the FDA finally approved Gilenya. In fact, my sister heard first and send me a text message about 40 minutes after the drug was approved. I was so excited that I picked up the phone and made an appointment with my Neurologist for October 20th to talk to him about it. I had visions of no more needles and Immuran dancing through my head.

SCREECH went the brakes on that vision as soon as I read the Bloomberg report on the WHOLESALE price Novartis intends to charge for the drug. $4000.00 a month! Thats right..4 THOUSAND dollars PER MONTH. WHAT?! Hey...I understand the concept of profit and how expensive research is as well as the next guy does, but honestly. $4000.00 per month for a ONCE A DAY pill?!?!? Thats 133.33 PER PILL PER DAY..and that's the WHOLESALE cost.

All I can say is SHAME ON YOU Novartis. You have successfully out priced your medication from the very people that need it. Do you REALLY think my HMO is going to authorize Gilenya when it can pay for both my injection AND Immuran for less than $1500.00 per month?? What about the folks that don't have insurance?? Like they can come up with $4000.00 a month WHOLESALE. SHAME ON YOU!!!

Traveling......

2010-09-27T14:04:00.001-07:00

I’m actually blogging as we get to cruising altitude on my way to visit my family. Interesting thing this modern technology. Means we can run, but we can’t hide.

I’m actually feeling pretty good today. Tired from getting up at 3 a.m., but other than that no extreme fatigue today. Of course the travel isn’t over yet. However, I was lucky that my connecting flights weren’t far apart so walking wasn’t too difficult. Letting the airlines know in advance I’m deaf helps a lot as well.

I have to admit, I’m always apprehensive when I travel alone. As if being deaf wasn’t enough, throw MS in an one never knows what to expect on any give day, let alone a travel day. I never know how my body is going to react to the stress. Even if it’s GOOD stress, it’s still stress.

I made an appointment with my Neurologist when I get back to talk to him about the new oral MS drug. I’m already on Imuran so I’m familiar with the side effects of taking an immunosuppressent, I’m convinced it was going on the Imuran that beat my MS back into submission earlier this year. It’s my understanding that with the new oral med I wouldn’t have to take injections anymore. Wouldn’t that be awesome! A pill a day to keep the MS symptoms away. What a great stride forward for us MSers. Makes me hopeful that we WILL see a cure someday.

FIRE!!!

2010-09-26T08:32:00.000-07:00

O.K. I know were not supposed to yell fire in a crowded room.....but my legs are on FIRE!! One of the worst MS symptoms I have is neuropathy. It makes my legs and often arms, feel like they are on fire. My skin become so sensitive that even the air blowing for the overhead fan hurts. Nothing seem to help anymore. I usually am pretty successful at ignoring it, but it woke me up several times last night. My feeble attempts at ignoring it weren't successful to say the least.

I am still determined to make today a GOOD day in spite of the pain. Mind over matter, mind over matter is my mantra of the day.

Finally Fall

2010-09-22T10:45:00.000-07:00

About time I started blogging again. TIme has simply gotten away from me. Lately it seems like it's everything I can do to just keep up with life's frustrations. Social Security denied me yet again for benefits. Apparently I still have a brain so chronic pain and MS are not reasons to be disabled. Well then what the hell is? Oh and don't forget I'm deaf as well.

As I can no longer work a job on my feet. Heck, I'm lucky I can walk, looks like I have to figure out a way to start a second career. So, back to school I go. Which is going to be very challenging considering I can't hear, nor do I sign. Way to set up for success don't you think?

My MS has been a sleeping giant the past few months. Tossing and turning to let me know it's still there and can awaken at any time. My biggest problem has been the pain in my legs. That "FIRE" pain that screams out with every touch against my skin. I try to ignore it as much as possible. Medications don't seem to work anymore and I haven't found a way to find relief using any natural remedy.

I' still taking the Imuran which, I am convinced, is really what put my MS into sleep mode. I'm walking with a cane. While I have to be very careful, I'm WALKING! No more chair which is an amazing blessing that this time last year I didn't think I'd be able to say again.

Why bother

2010-08-19T18:29:00.000-07:00

My heart just isn't in blogging right now. Hasn't been all summer. I'm hoping it comes back. I miss it...but the well of topics has run dry.

What a week

2010-07-08T06:12:00.000-07:00

I have actually been doing pretty well with the MS until last week. My neurologist had put me on Immuran a few months ago and it seemed to beat back the monster. That is, until this week. Suddenly my left leg is weaker and more painful, I'm exhausted with no exertion. The MS hug decided I wasn't getting enough hugs in real life I guess and has re-emerged to make up for it. (Note the sarcastic wit). Then on top of it all I fell. Perfect. Like I need a fall with my back as bad as it is.

So I'm dealing with it all by using my machine and trying to get some extra rest. I know if I called my neuro he'd put me on steroids. They work, but for me the side effects are brutal. So, I'd just as soon avoid them as long as possible.

I'm hoping this is a pseudo exacerbation due to the heat (thats my story and I'm stickin to it)! Of course, it isn't as pseudo exacerbations go away when the irritant is gone. i.e. heat, stress etc. This has been going on for almost two weeks. So it's a full blown exacerbation. Whoop de do.

MS Sucks

2010-07-05T09:49:00.000-07:00

Spent some time in Texas. Had my machine fine tuned and received some new protocols. The Immuran my Neurologist put me on about 3 months ago really put my MS into remission. The first two weeks on the med was rough, but now I have so side effects at all. It was just a matter of hanging tough through it all. I've been doing pretty well, up to the last few days. Don't know what triggered this "little" exacerbation I'm experiencing, quite possibly the travel back from Texas last week. Now my MS pain has flared up as well as balance issues. No falls thank God.

I haven't been blogging like I should, but I have had so much on my plate to deal with. My back, my MS and my hearing. I just needed to take a break, but I'm back now :)

I won't complain about the weather again!

2010-04-17T17:11:00.000-07:00

Today was an absolutely gorgeous day here. The high was in the low 70's. The morning had no breeze (unheard of here), so sitting at the patio table felt wonderful. Then, my husband informs me were supposed to get SNOW next week! WHAT?! No flipping way! I want SPRING to stay. I'm tired of the snow and the COLD. I want to be able to sit on my patio, basking in the sunlight without a heavy coat on! Waaa Waaa Waaa.

Then I read Wendy's latest entry http://wendybooker.wordpress.com I'll never complain about the cold again. Imagine waking up and having your sleeping back covered with ice particles and the clothes you washed the night before, frozen solid! She actually sleeps with her tent flap OPEN.....at 16 degrees!

Wendy isn't eating enough (They require 8000 calories A DAY). She's having a tough time swallowing. I hope she is able to eat better soon and this doesn't become something that stops her mission.

Her experience is an amazing thing to read about. The more I read the higher my level of respect for her goes. I have a tough time just getting out of bed in the morning. I can't imagine how she does it. One of the questions I have for her is how she battles MS fatigue! I know when I get tired my balance is even worse than "normal" and if I push myself I'm in bed the next day. How on earth is she able to push her body to such limits. I can't wait to ask her the questions!

If you have a few minutes, read her blog. She is one amazing lady!

Laquinimod

2010-04-15T16:19:00.000-07:00

We've all been waiting for an oral MS medication. I know I'm tired of the needle's.

An article came out today in Business Wire http://www.businesswire.com/portal/site/home/permalink/?ndmViewId=news_view&newsId=20100415006164&newsLang=en containing recent study information on Laquinimod.

Manufactured by Teva, Laquinimod is showing some pretty promising, if unexpected, results. The idea of the drug is to reduced the amount of exacerbations experienced with RRMS through immunomodulation. An unexpected positive effect exhibited has been that it appears that in additional to anti-inflammatory properties the drug may also give neuro protection. Wouldn't that be something? A once a day pill that would knock down the amount of exacerbations you have AND protect your neurons. This would mean protection against permanent neurological damage.

Current animal studies show that following treatment with Laquinimod there were significant reductions in the extent of demyelination, and more axonal preservation within spinal cord lesions. Additionally, infiltration of inflammatory cells into the spinal cord and brain were reduced.

Laquinimod also has also promise with Rheumatoid Arthritis, insulin-dependent diabetes mellitus, Guillain Barré Syndrome, Lupus and Inflammatory Bowel Disease.

Laquinimod was given fast track designation in February of 2009. It will be interesting to see what the phase III trials show. Their results are expected later this year.

Just who is Wendy Booker?

2010-04-15T10:34:00.000-07:00

I've decided to add a few new components to my blogging. As with everything in life my blog is changing and evolving. I have been following a woman named Wendy Booker. Her name may sound familiar to you if you receive the MS connections magazine. Wendy is the amazing woman who as I type, in in Nepal and arriving at her Mt. Everest base camp sometime today.

What makes Wendy so special (even though she herself doesn't consider herself to be so)? She has been climbing the highest mountains on each continent. Her goal? To be the first person with MS to climb all the seven summits. Mt. Everest is the last summit for her to climb in order to meet her goal. She expects to complete the 29,000 foot climb in May.

I have been given the unique opportunity to be able to have a question and answer session with Wendy, and even a possible phone conversation! I wanted to share this with all of you and encourage you to follows Wendy's journey at www.wendybooker.net

If you would like to ask Wendy any questions please let me know and I will incorporate them with mine. I will then post all the questions and answers here. I'm very excited about this project and am looking forward to your feedback!

My big red bike...the community project..and my second childhood begins.

2010-04-14T14:17:00.000-07:00

MS has taken up such a large portion of my life, for so long, in such a negative way that my "well" was beginning to run dry. Heck, not beginning, WAS dry.

There have simply been so many things going on in my life the past two years. I discovered that I was simply stretched to thin and hadn't taken the time to make sure I kept my "well" filled. My second childhood began last month with the arrival of my fire engine red tricycle. That tricycle has become know in my subdivision as the "community project". It arrived in a million pieces with very poor instructions. As neither my husband nor I are/were bicycle folks neither one of us knew the first thing about putting the silly thing together. However, with lot's of laughter, frustration and a few colorful words thrown in we got it together......sorta. We couldn't get the chain on or the brakes working. (I still have the scab on my knee from the brakes not working properly)!

One neighbor tried to help us get the chain on....he couldn't do it either. Father Wes dropped in and helped get the brakes working after yet another neighbor had tried unsuccessfully. The local lawn mover shop (we don't have a bicycle shop within an hour of us) got the chain on. Yet another neighbor helped tighten everything. Finally, it was together. Whoohoooo.....I took it for a ride and the chain popped off around the block. So, yet another neighbor put the chain back on and adjusted the gears for me. See, community project.

However, more importantly that red tricycle has got me out and about. Something I've needed for awhile after being almost completely house bound for the past two years. The exercise is good for me. While I can only ride for short distances right now, due to my poor leg strength, I try to ride everyday. I hope that soon riding around the block will be the norm instead of the exception.

My tricycle makes a funny rubbing noise when I ride it, but that's O.K. I think it gives it character...of course I'm sure yet another neighbor will hear it and figure out how to fix it. All I need now is a tall flag to put on the back...and a baseball card clipped to the spokes.

Adventures in Wonderland

2010-04-08T20:42:00.000-07:00

Why do we find the need to pretend everything is "O.K."? I don't know about you but whenever anyone asks me how I'm doing my automatic response is either, "Fine" or "O.K.". Often when things are quite the opposite. Is it because we don't want to burden people? Appear like a whiner? Or perhaps because we think that if we say it enough it will be true?

Anyone who has MS knows that on any given day things are NOT O.K. If the weather is changing our spascity kicks it up a dozen notches. If the weather is beautiful we do too much and then our stamina is gone for the next three days. Then there is the MS "Hug". I wish I could figure out what triggers that one. For me it's like a huge muscle spasm that wraps itself around my chest. I breathe trying to convince myself that I will NOT suffocate, while every breath hurts.

So what do we do. We take a pill or a shot for every symptom MS gives us. When they no longer work we simply change to a new "cocktail" of medication. Often the side effects of the medications are worse, in my experience, that the actual MS symptoms. So what's an MSer to do?

I try to keep a positive mindset. I try to get exercise. I try to socialize, and I try to focus on anything BUT my MS. I refuse to feel sorry for myself or give in to self pity. However, I often feel like Alice in Wonderland and darned if I don't have a creepy Mad Hatter.

Saying Hello to Spring

2010-04-05T15:10:00.000-07:00

Spring is a relative term in the mountains. It can mean day's with temps in the 80's and days (like today) with snow falling. As I sit in my living room and look out my front window I am reminded, and amazed, at the beauty of where I live. I really have the best of both worlds. I live in the tip of the Southern Sierra Nevada Mountains. This means I live in a land of four full seasons, but none of them extreme. Hop in the car and in an hour I can be in the City, go two and a half hours in the other direction and I can be at the beach.

I have a beautiful view of a mountain top from my front window. Right now it's snow capped and looks as if it's been dusted with powdered sugar. I have birds flying around my window seeking out one of the two bird feeders we have out front. A bit further I see the new blooms on our peach tree and the red tulip magnolia's blooming. Spring is finally here.

Accupuncture has been going relatively well I think. I get some relief from my back pain and am very relaxed following treatment. Pity it's only twice a week. I could get used to feeling that relaxed every day!

Accupuncture anyone?

2010-03-30T06:29:00.000-07:00

Well, yesterday was treatment number two using accupuncture. I'm actually being treated for a bad back and he's thrown stress in there as well. (Nice fella huh)?

Following the first treatment the pain relief lasted a few hours. Which, believe me, was bliss. The stress relief part made me very relaxed. Until I got home to the denial letter from Social Security (but that was already covered in a previous blog). This time, the pain relief lasted about the same, but the relaxation lasted into the evening. I go back tomorrow for another round.

I talked to the accupuncturist (is that a word?), about my MS. He said there are various things that can be done through accupuncture, in fact he has several MS patients that see him FOR their MS. For now, we're going to concentrate on my back and stress and possibly add MS to the mix at a later date.

So, if you can try it! It really doesn't hurt and it works without any medication side effects! What have you got to lose?

Another drug added

2010-03-25T15:58:00.000-07:00

Went to my Neurologist yesterday. Of course he is completely opposed to LDN and started me on Azathioprine. A chemo therapy agent. I'm on a Monday Weds, Fri. schedule so I tarted it last night. I felt a little nauseous about 2 hours after I took it, but no biggy. Although today I have no desire to eat anything. Weird for me.

I'm still seeing the other Neurologist on the 2nd. It will be interesting to see what he says as he sounds much more progressive about MS than my current Neurologist. It's amazing the difference in the care we receive. It's the luck of the draw. You see a Neurologist and think they would be up on the latest treatments and supportive of them. Not so as I have discovered.

Just shows how important it is that WE keep up on all the latest information and become strong patient advocates for ourselves.

Dear God.......

2010-03-23T09:28:00.000-07:00

Dear readers this is very different than the normal blogs I write. I hope I do not offend anyone and if I do.....I apologize.

Dear God,

As you know I received the notification that they denied my SS disability in the mail yesterday and the denial for CALPERS retirement 3 weeks ago. So where are You? I have always managed to remain faithful and my beliefs strong. However, I feel You have left me alone in the world. A world that is spinning out of control. Again I ask, Where are You? I don't feel Your presence or Your love. I've had to hire an attorney for my retirement and now will have to do so for my ss. I have watched so many friends with MS struggle financially due to not being able to get help in a timely fashion. I paid into the system for 30 years and was denied being told , "Your arms still work". Where were You when that decision was made. I no longer believe that "The lord never gives you more than you can handle". Is there a lesson to be learned? Haven't I been through enough between the MS and the other afflictions You have allowed me to suffer? I have tried so hard to handle things with grace, but I can't any longer, I'm too angry. My question now is.....when is enough enough???

Sunday Morning

2010-03-21T09:48:00.000-07:00

I'm enjoying a quiet morning with coffee and a homemade scone. Was up at 5 this morning then went back to bade around 5:30 and slept till 8. I'm tired today as I over did the last two days, but it's not train wreck fatigue, it's just the kind of tired I think anyone would have after two busy days.

Beginning week three on the LDN still not seeing improvement as far as my MS symptoms, but obviously my energy level is better. However, I'm going to have to learn how to manage the new energy levels so I don't over due. I don't know how far I can push anymore, which is a great problem to have.

I did something stupid yesterday. I was full of energy so my husband helped me out of my wheel chair onto a gardening stool so I could trim the bushes in the front yard. I did great for about 15 minutes then I fell backwards and hit a small boulder we have in the front yard thankfully I didn't hit my head on it (maybe it would have knocked some sense into me). Didn't seriously hurt myself, but I won't be gardening anytime soon.

I see my Neurologist next week.....I just hope it's not a complete waste of time. Of course he doesn't know that I'm getting a second opinion on the second of April and looking to change Neurologists.

Amazing day

2010-03-19T17:59:00.000-07:00

Wow, what a difference a day makes! Today was an AWESOME energy day. It's now 6 p.m. and normally I'm in my pajamas and ready for bed. NOT TODAY!

Today we had new carpet installed and I spent the morning putting all my china etc back in the china cabinet & hutch. Then we took my car to the body shop (had a little fender bender yesterday, I'm fine), and then rental car place.

When I can home I decided to bake! I made home made scones and now have a pumpkin streusel cake baking in the oven! My husband made the comment that he was glad to have me "back". I can now tell that the LDN is working on my energy level.......I'm thrilled!

LDN First Week

2010-03-18T15:06:00.000-07:00

One of the big things I've noticed is my energy level increasing. I now get out of bed in the morning and feel rested instead of fatigued like I did before LDN. I'm also noticing that my energy level is lasting longer. I don't find myself needing a mid morning nap. I still require one in the afternoon but my energy level is better afterwards.

I haven't noticed any changes as far as my MS symptoms, but it's only been a week and a half. Baby steps, I keep reminding myself. Baby steps.