Gilenya outrage...

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......

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!!!

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

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

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

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

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!

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

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?

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.

 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

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

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?

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

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.......

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

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

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

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.

Better and better.

I'm feeling better than I was yesterday, when it comes to energy. Yesterday I was just wiped out. Today I'm a bit tired, but no too bad.

I've been on the LDN for several days now. No side effects at all (Thank goodness). The biggest difference I've noticed is that's it's MUCH easier to get out of bed in the morning. I don't mean physically, but energy wise. Physically, I still struggle in the mornings. I'm hoping that over time that will improve.

I'm sitting in my chair today looking out the window at yet another absolutely beautiful spring day. Flowers are starting to bloom. Seeing all the new growth gives me a sense of rebirth and continuation. That no matter what struggles go on in life, life still continues. It's just a matter of taking those baby steps forward everyday.

Beautiful spring day

It's a beautiful spring day here. I sitting in the den and watching the birds eat from the feeder. Some of my flowers are already up and blooming. It's still a bit too cool to sit outside and enjoy the weather.

Today, I'm tired. I'm talking train wreck fatigue tired. Likely related to Friday. Such is what stress does.
As a result I really can't comment as to the LDN. Still taking it :0)

Let it snow

UGH...I wish the weather would make up it's mind. It's been changing, sometimes drastically from one day to the next. Which means the barametric pressure has also been changing, which in turn gives me fits with my MS. I'm having a terrible time with neuropathy in both legs and am pretty shaky.

On a positive note, while I'm tired related to the stress of yesterdays events, my energy level is good. It was easier to get out of bed this morning and I didn't find myself wanting to crawl back in after I got dressed! So, more baby steps with the LDN. I really haven't seen any other improvements besides energy improvements, but I remain optimistic. I can't wait to see what I feel like after being on it for a month or two!

LDN and today

Today wasn't a good real life good. It was a high stress day. Stress always wipes me out. I slept on the way home and took a nap when I got home. I'm exhausted. Fortunately, no LDN side effects and when I got up this morning I had even more energy than I did yesterday. :0) Now I'm looking forward to each day. Simply to see what improvements are there.

Ahhhhaaaa...signs of improvement!

Last night I took dose 3 of LDN. This morning I actually feel like I have more energy. Not a whole lot, but enough so I can tell the difference! I'm going to have to remind myself to take it easy and not over do. It would be great if I felt more energy everyday. Even if it's in tiny increments, I don't care. As long as it continues to improve! One of the hardest MS symptoms for me to deal with has always been the fatigue. It would be great if it would ease up enough to let me get back to some of the activities I love and have missed!

LDN Day 2

So far no side effects and no changes. As I said prior, I'm a realist so I didn't expect an overnight miracle. Would I like one.....you betcha. However, I will happily settle for slow but steady progress and improvement.

So, I'm resting and watching the snow fall. Keeping my stress level under control to avoid any potential flare ups.

LDN Day 1

 Took first dose of LDN last night at bedtime. Don't feel any difference today. (I didn't expect to). No side effects. (I have insomnia already).  Baby steps, taking one day at a time. Amazing that a drug that can do so much good has no side effects outside insomnia. Will keep you posted!

LDN arrives

My first bottle of LDN arrived today, so my first dose will be this evening at bedtime. I am really excited to start this medication. No more shots!!! Whoooohoooo! I don't expect a miracle. I'm a realist. However, I'm very optimistic. Can't help but be with all the research reading I've done and the comments I've received. My PCP started me on 2mg for the first month. I'm glad to be starting out slowly and titrating up as we go. The hardest part for me is going to be staying awake until 9 p.m. to take the pill. MS fatigue has me in bed pretty early these days, but from what I've read my energy level should be the first thing I see an improvement in, and it should be fairly quickly. I'll keep you all posted!

LDN

I'm pretty excited. I'm going to be starting Low Dose Naltrexone next week. Just waiting for it to arrive from the pharmacy. I've heard such great things about it, as has my Primary Care Physician. I have changed Neurologists and start with my New Neurologist next week. My PCP has already spoken to my new Neuro about the L.D.N. and he's on board with it. Means no more injections!

The only side effect I've read about is insomnia. Well, since I already have insomnia I'm not to worried about it.  Anyone on LDN have any suggestions or comments about it?

Time for a change

I decided not to do the steroids for the Optic Neuritis. I figured if my Neurologist didn't think it was a big deal why should I? (Yes, I got a bit pissy about it).  In fact, I got so pissy about it that I've requested my records from my Neurologist and asked my Primary Car Physician to help me find another one. I intend to keep my appointment with him this coming Weds. Simply to hear what UCLA had to say, then I will no longer see him. He used to be the best Neurologist, then he had a stroke and now it's like he can't make a decision without consulting with someone else.

My Primary Care Physician and I actually had a conversation about LDN. I don't know a lot about it, but it means no more shots. A pill a day, I can live with that! So, I'm doing research about it. If anyone has any information about it or knows of a good website I would appreciate it if you would share it with me.

At this point my O.N. isn't any better. In fact I've lost a lot of my periphreal vision on the left. It will come back. Slowly.

I have to admit this case of Optic Neuritis left me more than a bit peeved with God. When is enough, enough? I was denied my retirement, still waiting on Social Security only to find out that THEY are waiting for my Neurologist to get my medical records in. They have requested them numerous times over the past 4 months apparently. I just can't seem to get a break, but I'm trying to hang in there. My Pastor gave me an assignment of reading Phillipians chapter 4. (As if giving up chocolate for Lent wasn't enough).  So, I'm reading it. I'm sure God will teach me something during my study.

Anyway, there's the latest update.

Where is the caring?

Once again I find myself back at ground zero. I went to my ophthalmologist on Friday and I once again have optic Neuritis. This time on the left.  So, I wheeled out of his office with eye drops and an appointment to see him in six weeks.

No biggy. I've been through this before. However, I noticed over the weekend that I was losing my peripheral vision on the left. OK. THAT is NOT GOOD. So, first thing this morning I called my ophthalmologist only to be told he wont be in until the afternoon. Great. So, I then pick up the phone and call my neurologist. Had to leave a message at the front desk. 

I went about my day and noticed that my left leg was getting weaker and I was dropping things. By this time it was afternoon and I hadn't heard from anyone. (I believe it was close to 3: 30 p.m.).  SO, I picked up the phone and called the ophthalmologist, only to be told he just got in and would be given the message. I then called my Neurologists office, only to be told they would once again take a message. HELLO does anyone care?!?!? 

As a last resort I called my primary care physician and told her nurse the symptoms. She stated she would talk to Dr. Hall immediately. Within 5 minutes my phone rang. It was my primary care physicians office informing me that they had put in an emergency authorization to the insurance company for IV steroids with home health. (YUCK). FINALLY, someone who gave a crud that I was losing my eye sight. 

About 10 minutes later, my phone rang, it was my neurologist's front office girl stating that he had spoken to UCLA and wants to see me March 3rd. OK great......but does he want to do anything about my eye? I asked. The response , "No".

I hung up the phone and cried. Called my husband and asked him what I should do. Do I call my primary care physician and cancel the steroids. His response was no and I should find another Neurologist. 

It is now 4 P.M. and I still have not heard from my ophthalmologist

MS and another year

Well, this is turning out to be the first big exacerbation of the year, and hopefully the last. I fell yesterday. Fortunately it wasn't a bad fall.  Today I'm very shaky and my hand aren't working right. Which means this blog will be pretty short. I'm using the drops for the Optic Neuritis faithfully twice a day. I've noticed a little bit of color loss in that eye, but I know it will come back.

I'm trying to keep my spirits up because I know that moping and pity parties make the MS stronger and doesn't do me any good.  I have to keep moving forward no matter what MS throws at me and I will. I'll keep taking things one moment at a time knowing that this too will pass and I'll come out the other side even stronger. Although at times I wonder just how strong I'm supposed to be? I never aspired to be Wonder Woman even as a small child.  Yet at times that exactly who I think I'm supposed to be.

So, I cling to my faith. Knowing that God has a reason for allowing this. That this experience is simply another thread in the tapestry of my life. HE knows what the finished tapestry will look like, I don't. It's as if I'm looking at the bottom of the tapestry and all I see are loose threads hanging down and a design that makes no sense. Yet, HE see the top and the beautiful picture it is becoming.

Here we go again.......

Went to my opthamologist today for a follow up on the optic neuritis I had before the holidays. Actually, this was a followup to the follow up. Anyway. My left eye had started bothering me on Monday. I didn't panic, I was hoping it was nothing. (Don't we ALWAYS hope it's nothing)?

Sure enough I have yet another case of Optic Neuritis, in the left eye. I'm on eye drops for now, but if this follows the path of all my other bouts of O.N. I'll be having a full blown exacerbation before long. Isn't MS grand? 

I find myself unable to be witty, when all I want to do is have a good cry.

Short Post

Today is a pretty good MS day. I think a big part of of the reason is because of my mindset. It's hard to feel sorry for yourself when the weather is gorgeous and your staring at a dozen beautiful red roses that your husband gave you for Valentines day :)

I am a bit shakey today, but I have those days every now and then as I'm sure most MSers do. So I only use plastic glasses and am more careful on those days.

One thing that I've noticed I'm doing again is self isolating. YUCK. It's such an easy trap to fall into when it's just hard to get around. So, tonight I'm going to make sure I go to the Shrove dinner at church. Get out and amoung friends. The weather is still perfect and I need the fellowship!

Appreciating the beauty of the day.........

We have had very unusual weather this winter here. (What area hasn't). However, instead of cold and snow we've had the opposite. Here it is February and we have highs in the low 60's! Where is our snow this year??? My bulbs think it's spring and have begun growing. Heck most of them are 3 inches above ground already! I'm afraid my Magnolia tree will also think it's spring and start blooming. If that happens I know we'll have a hard freeze and they will die :(

Although for all my worry over my garden I am appreciating the beauty I see. Snow still caps the mountains all around me, yet I can look down and see the first Verbena flowers of the year already blooming in a vibrant red in the garden. My day lily's are up and I'm waiting for their first blooms to appear.

My garden reminds me of my journey with MS. It's all about perspective. I can bemoan the fact that my flowers are already starting to bloom or hush up and simply enjoy their beauty. I can also bemoan the fact that I am required to use a cane to walk at all times or hush up and be thankful I CAN walk.

So today, I'm not going to worry about what tomorrow will bring. I'm simply going to enjoy the beauty of the day.

Shuddup already

Have you ever just wanted to tell everyone just to shut up about your MS?! I've been feeling that way for awhile, hence the slow down on my blogging. (Of course I do blog weekly both video and written for howIfightms.com). I try and live my life NOT being focused on my MS which is pretty hard to do when your having a tough time getting around. However, it becomes impossible when the first sentence out of everyone's mouth when they see you is "how are you feeling".  Is that how they always great their non-MS friends? I know...they ask because they care. Maybe I'm just being pissy or too sensitive, but how about a greeting that is a simple, "It's good to see you". Let ME bring up the MS if I want too, or just let me forget about it and enjoy the company......

Too short for a title.

Received negative news yesterday, but like my MS, I refuse to allow it to ruin today or the weekend. I have faith that everything will work out. Whether it be the way I want or not. I try to focus on the fact that there are so many people who have a tougher road to walk than I do. MS sucks, but it could always be worse. Although right now it's hard to focus on the positive when you cant find it. I'm sure I'll trip over it soon, but right now things seem a bit glum.

So, focus on my blessings, focus on my blessings is my mantra for today. Husband, Family and friends. Oh, and my furry critters too!

OK now I'm

pissed. We're talking big time, full blown even angry at God PISSED. I just received word that the State of California in their infinite wisdom decided to deny my industrial retirement. Even though their own MD said I couldn't return to work due to the injuries. (This is on top of the MS). I have just had it. When am I going to get a freaking break? Sure, I can appeal. But I have to hire an attorney to do that. I don't happen to have that kind of money lying around.

Work says I can't do the "essential duties" in a wheelchair so I can't come back to the same job. However, I CAN come back to a job with a drastic cut in pay, which won't even pay my mortgage let alone other bills.

So what are my options..........

Another day in paradise.....

Woke today to a beautiful day in the SFV. Clear blue skies with a crispness in the are that reminds us that winter is still here. Today we head back up to the mountain. No snow up there, but the high is in the 30's. I've enjoyed the few days here. Did too much and pushed to hard as usual, so I'm tired. However, I think it's a good tired. My left leg is bothering me a bit, but nothing worth complaining about. I can't believe we are almost at the end of January already. I think time goes fast for me because it's based on Doctors appointments. One right after the other. I'm a bit peeved at my Neurologist right now. Seems he can't make a treatment decision without consulting with someone else. Which waists my time and money when I see him. An hour each way to see him, a 15.00 co-pay to be told he wants to consult with UCLA first. Before I go down for me next appointment I'm calling to see if he "consulted" with them and has determined a treatment plan. If he hasn't I'm not going back to see him unless he does.  I wonder why physicians don't seem to understand that our time is just as valuable as theirs is? Oh well, just another day in paradise.

Who am I?

Sometimes I feel as if I no longer know who I am. MS has changed me so much over the past 3 years. I used to identify myself by my profession, my family, my children. Well, now the children are grown and living thousands of miles away as do my parents and sister. I can no longer perform the "essential" duties of my job as I was recently told. So, who am I? I know I am a person of worth, but I feel as if I am lost. Not knowing which direction to turn. As if I am in a carnival house with smoke and mirrors and every direction I take leads me to a more distorted view of myself.

Thankfully, I have a wonderful husband who keeps me grounded. Yet, I feel at loose ends, wondering what my purpose is.

Rantings of a madwomen

WHY, WHY, WHY is the statment that has been running through my head for the last week. I'm frustrated with my Neurologist who now wants to consult with UCLA before he decides what the hell he's going to do with.me. I wish he'd just make a freaking decision. This is the third office visit in a row where he's been indecisive.

Meanwhile our insurance copayments for our drugs doubled. When your on 7 different pills each day PLUS your injection it's expensive. I've tried to wean myself off some of the drugs, but I can't handle the symptoms they help mask. So now my co-pays are almost 250 a month just for the pills add another 30 for the injections and we're pretty close to 300 a month. I know, some pay more than that...but as this is all about me today....only what I pay matters. (See I'm ranting).

Then I wonder why I take all the medication, it's not going to make the MS go away or improve my balance. I took a facer today in fact. Landed literally face first. I'm lucky I didn't break my glasses or my nose but it looks like my chin is going to have a rug burn on it. Tomorrow I may find the humor in that.....but not today.

I want my life back. I want the Kimberly I was 2 years ago back. (Well maybe not all of her, just the good parts). I want my independence back. I want to hold a garage sale and sell off all of my DME...scooter, electric chair and two wheelchairs. Not to mention the shower chair. I don't want to have to use these things until I'm in my 90's. I want, I want, I want. I sound like a 9 year old don't I? 

I just want ME back. Sometimes I think I'm forgetting who I am because it's always about the MS. Every activity, every action is dependant upon the MS and how I feel becasue of it on any given day. So, today I feel frustrated. I want to go romp in the snow with my dog and husband , but, I can't. Why? Because the MS has made my balance very iffy today, so even with a cane I'd fall. I just can't imagine myself to playing in the snow in the chair, What the point of that?

So, I'll sign off now and have my pity party. I will only allow it to last this afternoon becasue I refuse to let MS beat me and crawling into be with my covers over my head works for one afternoon, after that, it's just giving up.

The holidays

Beauty of Gods work

KylerMakayla

A happy Grandpa Mark with the kids and the blanket I made Kyler for Christmas.

Mark and I

I know shame on me. I haven't blogged in over a month. Well, I have, just not here. Life has been very busy over the past month. We decided to take a trip to Missori to see the folks and Kentucky to FINALLY meet our grandson. We drove because LITERALLY everytime I've flown with my wheelchair it's been broken. 2000 miles each way. YIKES. I don't know if we would make that drive again. Driving 12-16 hours every day was a killer. Of course, seeing the family was totally worth it. I was smart and paced myself and my MS actually behaved itself. It was when I got home that it kicked my hind end. The top picture above is one I took on our way back home. On our drive home we had snow falling from Kentucky to just outside Kingman Arizona. I took this picture just before the California Border. It felt like God was welcoming us home. The rest are of the grandkids.

Since I've been home MS has reared it's ugly head. Go figure. Leading to an EEG and an L.P. last week. still have a bit of the spinal headache. UGH. I see my neurologist on Weds. so I'll let you all know what he says.

I promise I'll start blogging HERE more often!

HowIfightMS.com