Comparing being an MS Patient to being a Parent

I came to a realization this morning that publicly having Multiple Sclerosis is a heck of a lot like being a parent & raising children.

As a parent you receive TONS of unsolicited advice on what to do / how to treat something, etc. - all that is given with the best of intentions from the sender - but can be totally unwanted by the recipient!

Like I said, I came to that realization today when I was doling out some 'parenting' advice to a friend.  Good grief. 

I almost choked on my humble pill.

I haven’t posted in quite a while… that seems to be a consistent beginning to posts for me lately – doesn’t it! :-/ Sorry about that.  A LOT going on right now.

I wanted to label this post as ‘brain vomit’ – but I figured that wouldn’t be very appealing – so I’m leaving it untitled for now.

Back in July – I posted about having to stop the oral treatment I was on because it decided to wage war on my liver (big bummer) and that I’d have to start another treatment. Well – I can expound a little bit about that now.  The last treatment option for me (that is FDA approved for Multiple Sclerosis) is Tysabri. That would be the medication that was pulled from the market for a time when I was first diagnosed around 2005 because of deaths related to PML – a rare & untreatable brain infection.  This drug has returned to the market after more research & I’ll try to sum it up in a nutshell… The researchers discovered that there is a virus – the JC Virus – that is the precursor to PML… Normally – on its own, JC Virus doesn’t really do anything to you however if you have the JC Virus – your chances of developing PML while taking Tysabri is much MUCH higher than if you don’t. (Just like MS, no one knows how one contracts the JC Virus). That said – the researchers developed a blood test that can check to see if a patient has the JC Virus or not. A good step in the right direction and should remove some of the risk associated with Tysabri treatments, right?

So – I requested to find out how to get tested for the JC Virus before I started on this new treatment. It took quite a long time – but I got the results to that blood test yesterday. Guess what? I tested positive. DANG IT!

In the same breath that my neurologist told me I tested positive for the JC Virus – she continued with “I still think you should start Tysabri anyway – however, you’ll just be limited to only 12 doses (one year’s worth of treatment). After that we’ll have to re-evaluate & find something else – likely transfer you to a doctor with UCSF or another doctor that is more MS specialized.”

I’d be lying if I said I remembered much else of the visit after that… my husband tells me that the two of them discussed exactly what this meant & how the chances of getting PML during the first 12 doses is negligible at best… yada yada yada.

As we were leaving the appointment, he walked me to the infusion center & we scheduled the first dose for next Wednesday – Oct. 5^th.

·       

·        So - I haven't yet started Tysabri - but I'd be lying if I said I wasn't scared to do so.

·       

·        I'm told (by my medical team) that it's my last 'on-label' drug option. I have the neutralizing antibody to interferons - so the rebif, avonex, betasaron drugs are basically saline solution once injected into my system. I'm told that copaxone isn't a good option for me (which is good since I don't think I could do the daily injections and be consistent with it). I've tried the new oral medication (Gilenya) and was kicked off that in less than 3 months because it put me at near liver failure stages... I've even done a medical trial for 'BG-12' and continued to relapse on that and was removed from that trial.

·       

·        So here we are... one last drug to try before we truly start grasping at straws… and I’m positive for the JC Virus. Of course. But - in spite of this, my neurologist and husband are pretty adamant that I begin Tysabri treatment. I've had such a crappy response to every other drug I've tried (meaning I seem to be in that small group that has the bad side effects) I'm scared witless about starting this treatment...

·        *sigh*

·       

·        I think I'm becoming resigned to it - but that's not exactly how I want to be when entering into a new treatment option.

I'm what one would call moderately active on Facebook. I belong to a number of different groups - some are patient groups for specific drug therapies, and others are general non-profit / MS related groups.  Today - as I was checking in with the groups I belong to - I got fed up - and posted a somewhat negative comment just a few seconds before I clicked on that lovely 'leave group' button ... here's what I said:

I don't generally post negative comments - however - I strongly feel the need to add a comment on this page as to 'why' I am 'leaving' this group. My understanding is that this page should be used to discuss the ***(removed)*** - and NOT to be used for others to attempt to draw profit for their own causes/products, etc. Unfortunately, that appears to be happening here & it drowns out the actual message of the ***(removed)***. Each individual posting their wares may have the best of intentions - but I find it highly unethical to use this board for trying to solicit business to your site/product. Very disappointing. I only wish this page were better moderated - as I truly believe the ***(removed)*** could help many people and facebook would be a great way to reach out. I truly hope that those that can actually use ***(removed)*** information are able to wade through a lot of the superfluous stuff on this page and can actually find what they are looking for - without being waylaid by the various advertisements others post here for their own profit.

I guess I don't understand some people and the way they think.  To me - what these people are doing is just flat out wrong! In my opinion, this would be just like having Nordstroms advertising INSIDE a Macy's store or circular... I don't understand why people think this is okay.

I was expecting (and still am braced for) a full backlash from those that disagree with me on this particular site - however, with the few messages and supporting comments placed on to the post I left on my way out - I know that others were just as exhausted with that junk as I was... A few people actually took time to write me a note of thanks for pointing out their frustrations publically. 

*sigh*  It's so frustrating that when there is something honest - and good - that others feel the need to jump on board and hijack the discussions and try to make a personal profit from it.

What do you think?

A fellow MS'r messaged me recently - asking about body heat. I thought I'd share my response with you too...

What I've found - with my MS - that my body tends to act like one of those socks full of rice that you put in the microwave.

It sounds odd - I know - but hear me out.

I can feel just fine & be moving around doing stuff - without any problem at all - then bam! The heat hits out of the blue & I'm sweating like a stuck pig for no comprehendible reason. Kind of like one of those bags of rice I was talking about. You can take it out of the microwave & it doesn't necessarily feel very warm at first - but all the sudden, the grains of rice shift a bit in the bag & it's super hot.

Same thing happens to me at night. I sleep cold - under covers. Then about 10 minutes after I wake up, I'm dripping from all the pent up heat that has finally decided to escape. Again, the same thing happens after I blow-dry my hair. About 15 minutes after I'm done getting ready, I'm so hot I can't do anything. Super crappy too – especially when you have to redo runny makeup!

I've had to learn to adapt & switch my schedule around so I don't have to do so much in the morning to get ready - but it isn't easy and is a pain in the butt to deal with.

I'm so sorry you're experiencing this symptom. Just know it for what it is - a symptom of the ever changing world of MS.

For me - the more it happens, I know when I look back there is more stress associated the few days surrounding the 'episodes'. I like to think of it as my body’s way of chiming in and telling me to 'cool my jets' for a bit.

Cooling vests are a great thing if you can afford them. They also have mini ones that just drape over your neck too - like a bandana almost.

Crappy Juggler

Learning how to balance everything in my life is something I've been working on for such a long time. Seems like just as soon as I figure out how to juggle everything and keep all the balls in the air, something else is thrown at me and I end up focusing too much on catching the new ball that I drop all the other ones I was keeping in the air so well. *sigh* I wonder if I am the only one... Pretty sure I'm not. Here I am fumbling around and trying to get everything picked up and slowly working things back into a new routine.  I'll get there. Thankfully I have a great boss that understands.... well as much as possible anyway.

Rude reminders.

Sometimes having MS really sucks more than others. Most of the time I am able to pretend that there are no impacts on my life from it... Well, that is until it rears its ugly head and reminds me in one way or another.
MS has been reminding me of its presence the last month or so - this time through some not so great lab work. To make a long story short, I have to stop my current treatment plan and start another. If this next treatment plan doesn't work, I would then be out of options for FDA approved MS drugs until the next new thing hits the market.
Well- fingers crossed. Here we go again.

ramblings

I was reading a posting on facebook a few weeks ago - someone asked about disclosing the MS diagnosis to a potential employer... hmm... really made me stop and think for a few minutes before I responded.

My personal diagnosis process was such a public matter at my current place of employment that keeping it 'quiet' just wasn't possible. My employer sent my drivers license through their insurance & I found out a doctor that suspected either MS or Seizures had placed a medical suspension on my license... all unbeknownst to me until I was asked by my new boss why my drivers license was suspended! yikes! Well, that started the ball rolling and a number of months later I received my diagnosis. (You can read more about that in earlier posts here.)

I go back and forth a lot between being thankful/grateful that my diagnosis is such public knowledge at this company & wishing that I could rewind time & keep it to myself.  The latter isn't an option, so I've embraced the fact that everyone knows that my life is going to be full of ups and downs. I'm very fortunate to work for a company that will celebrate my 'ups' and be understanding/flexible when I'm in the midst of a relapse.

There is so much mis-information / mis-understanding about exactly what the diagnosis of MS means, that my ultimate recommendation to this person was to keep it quiet for now. Another ‘poster’ on the  board said it best, I believe, when they said that you can’t ‘un-tell’ anyone anything. There are days when I get looks/questions, etc from people and it can be almost too much to bear. I get so tired of hearing about how I look like I’m doing really well. The adage – ‘you don’t look sick at all’. It is almost like people think that MS is an automatic death sentence. Again, this (I believe) is because of the lack of awareness and misunderstanding that surrounds a diagnosis…

The most frustrating part of having MS is in fact the unknowns. I know I have them.  During a somewhat severe relapse for me last summer, I was asked by my boss a very fair question – where do I see myself in 5 years, 10 years, etc. I was taken aback for a moment – but answered with the utmost honesty. I’d like to see myself right here. Just as healthy as I am today – just as able bodied as I am today – but I can’t see into the future. God didn’t grant me a crystal ball. 

As I think about it now, the same question can be (and quite often is) posed to fully healthy individuals as well. Like me, there is absolutely no way they can tell 100% where they will be in 5 years, 10 years, etc. I think the difference is that as a MS patient, we are forced to look the uncertainty square in the face on a daily basis.   

This actually makes me look at things differently. I don’t take as many things for granted. Should something happen to me, I will be able to say that while I will always wish I could have done more, I’ve done a lot. I’ve learned a lot. I’ve listened a lot.  I am thankful for what I have and every day I can walk without a cane or food brace I am ecstatic! Little things that most ‘healthy’ people simply take for granted.

So, until the cure is found for this disease, I will be the 'Face of MS' for my co-workers. Hopefully they will all be a little more aware and understanding of others along with it. I will still have days I wish I could 'un-tell' everyone - but I'll get through it just like every other MSer out there.

Until next time,

~Kristie

I'm learning that it is entirely possible to be tired - of being tired!

I don't know if it is life going non-stop for the last 7 or 8 weeks - or if it is the new medication (Gilenya) that I'm on - but my fatigue levels have been pretty bad the last few days.

Didn't know it was possible to do - but the other day I actually fell asleep at the dinner table! Not entirely as bad as it seems - dinner was over, kids were upstairs getting in the bath and Randy was in the living room watching one of his shows. I just didn't have the energy or desire to get up from the table and climb all the stairs to get to my room... so I put my head down & next thing I know - its the next morning. Somehow my husband got me up the flight of stairs & to our room.

There are medications available to help fight the fatigue (I have Provigil) - but I'm learning that if I take it every day - my body seems to build up an intolerance to it & it just doesn't work very well - if at all.

As I yawn here at my office desk - I realize that I've gotta get up & drive home now... I see another early bed time in my future.

Belated Mothers Day

Happy Belated Mothers Day!

A day late - but for the mothers out there - I do hope you had a fantastic Mothers Day on Sunday.

I was reminded too though - that without the men in our lives, we wouldn't have been able to become a Mother - and without our Children, we would have never experienced the "joy of parenthood" - so in our family yesterday, we had a relaxing family day & I loved every minute of it! :)

I know not all my posts are centered around Multiple Sclerosis - however - we have to remember that MS is only a very small part of the person. Without my family/friends, there wouldn't be a whole lot of reason to put up such a fight against this stupid disease every day.

Have a wonderful day everyone.

Eureka!

Why am I writing this?

Most of the medications on the market for MS are a type of Interferon. For most people, this is just fine... however - the body can create what is called a "neutralizing antibody to interferon" - which in effect means that the medication is neutralized in the system & you might as well be injecting saline solution into your body.

I was diagnosed with MS almost 6 years ago. I immediately began on Rebif - then had to stop due to pregnancy. Beyond that I tried some clinical trials, but was kicked off of those within a year due to low heart rate & liver enzyme issues. Over the last 2 or 3 years (up until late last summer) I was on Avonex. Currently, I'm on the oral medication, Gilenya, that was released to market late last year.

I never knew anything about the body creating this 'neutralizing antibody to interferon' - and was NEVER tested for it until I was fighting to get on the new oral. I just found out this last week that I possess this antibody - so basically the treatments that I've been on have pretty much been worthless for me.

Could explain a heck of a lot.

So - now I'm on my little platform - informing everyone I can possibly imagine - posting nearly everywhere I can think of - begging MS patients to request this test from their neurologists before wasting more money & exerting more frustrations over medications that may not be working in their body.

PLEASE - Spread the Word to any MS patients you know of that are currently on an injectable MS treatment plan. Isn't it worth the few bucks - to confirm whether or not the medication they take can/will actually work in their system?

Unfortunately, this is NOT A STANDARD TEST for some reason. I would think that this should be something the neurologists test every MS patient for BEFORE starting them on any treatment plan!

I asked my neurologist what this meant for me - should the Gilenya (not an interferon by the way) not work. For me, the next step would be Tysabri... so we'll give the Gilenya a try & hopefully it will work! :)

Stuff

Yesterday was my yountest daughter's 5th birthday. I can't believe how quickly my little girls are growing up. So sad... but makes me very proud to see what incredible people they are becoming.

Today, we are having Heaven's birthday party at the park near our home. :) Should be a lot of fun... keeping it simple - but still a lot of prep-work.

Have a wonderful day everyone!

I Won't Let Go

The last few weeks, it seems that life and the world around me has been running at full-speed & non-stop. That - along with some MS issues that have decided to rear its ugly head - well, it's exhausting... but things have to get done, right?

I'll admit - I've been exhausted lately. I've been moving a bit slower at times too.

This morning, when climbing in the car with my husband, he turns on this song - and tells me that it is his 'song' for me.  Take a listen:

This song is called "I Won't Let Go" and is by Rascal Flatts. Tears will now forever come to my eyes when I hear this song - as it will always serve as a reminder for me just how incredibly lucky I am to be married to my husband.  There will always be times that we disagree - and that we don't see eye to eye - but more than that, we will always be together and completely in love with one another.

Updates

The Walk MS Events are over!

My family spent the day with me last Saturday at the Folsom Walk MS Event - and then again on Sunday at the Sacramento Walk MS Events. 

Both were huge successes.

The Friday before the Walks, I decided it was time to buy a new pair of tennis shoes. It took trying on nearly 20 different pairs at multiple stores before I found the pair that fit comfortably with very little adjustment... ended up with a pair of Nike Air - that are grey and almost a fluorescent orange.

Not planned - but worked out great with the black & orange colors all around for the NMSS! My admission - I have *never* spent this much on one pair of shoes... I just gritted my teeth & looked away from the machine when it asked me to verify the amount. (They were $70.) But - these shoes kept me on my feet all day both days. :)

Well - looks like my MS Fundraising this year brought in nearly $3,000! YEAH! :) Every bit helps - so THANK YOU to everyone.

Well - family duties call - so I'm off & running (in my Nike's)!

Alternative MS Treatments: NUCCA & CCSVI

After reading numerous posts all over the web regarding NUCCA & CCSVI - I started to do a bit of research & learned that many NUCCA chiropractors are comparing the NUCCA treatment to a 'non-surgical version of CCSVI' - so I thought - what the heck... I'll check this out.

I'm thinking I should have done a bit more research on the actual NUCCA process & treatment. I understood that it only focuses on the axis - to take pressure off the veins & allow proper blood flow. What I didn't look into is the actual process of the NUCCA adjustment.

Here's my experience -

I found a practicing NUCCA chiropractor & went in for an initial consultation. He did lots of tests - measuring my leg lengths, checked the temperature differences on either side of my neck, took measurements of hip alignment, and about 4 x-rays of my head/neck. Then he had me come back the next day to go over the xrays & for an initial adjustment. The adjustment was where I felt things go a bit 'off'. As he had me lay on the adjustment table (which was only about 4 inches off the floor) & he proceeded to 'adjust' my neck by placing his forearm at the base of my skull & I began to feel his ENTIRE body shake with what felt like tremors/seizure. My eyes flew open & I tried to see what he was doing. What I saw was his other arm making odd pulling motions - like he was somehow mentally 'willing' my neck to realign & visualizing pulling things back into place. I don't know about you - but I found this to be quite kooky.

Here's my thoughts -

Will I go back? Not likely. I felt absolutely nothing. I understand the thought process & idea behind the process - but feel I need to do a bit more research on the actual NUCCA process first to find out if I just happened upon a quack of a doc - or if this is actually the real thing. (On a side note - I have gone to traditional chiropractors since I was very young. I totally believe in the body's natural ability to heal oneself & that the bodys alignment is critical to this process. In addition to MS, I also have multiple scoliosis with more than 4 separate curvatures in my spine & no natural curvature in my neck. There are portions of my back - mainly the bra line area - that I have zero sensation in. So maybe this NUCCA process isn't going to be what I need or what I'm looking for.

Hmm... leaves a lot to be thought about.

What do you see when you look at the people around you? Or – maybe the question is better worded – what do you think when you hear someone’s name mentioned?

For example – when someone says Brett Favre – for 99% of people the thought that immediately comes to mind is football. I don’t see an image of the man anywhere other than on the football field – but surely there is so much more to him than that.

The same things can be said for people we see or talk to every day – whether online or in person. What do people see/think when they hear my name – or see my face?

I was ‘gifted’ a collapsible cane by someone I love dearly recently. I totally froze when it was handed to me. I know it was given out of the most sincere thought & with much love – but I have to say – that it has been bothering me… It really brought up a thought – I’ve been so totally open & honest about my life with MS… has that been a mistake? Does being so completely honest make others see MS before they see me? This is a thought I’m struggling with.

When someone thinks of me, I don’t know that I want ‘MS’ to be what first comes into their mind.

However - with that said, that doesn't mean that I will stop trying to raise awareness - or that I will stop doing what I can to help fundraise for research - or that I will stop fighting this war.

I’m sorry that I haven’t updated this thing in a while. Seems life & work have decided to make a short excursion into hyper-drive! Work meetings, kids travelling, Walk MS preparations… yikes!

So much has been going on lately. My kiddos just went to spend a week with my parents in Oregon & had a great time. My youngest (not quite 5) made the trip for the first time… a big change for her – as this was the first time she was away from us for more than a day. She enjoyed time with grammy & poppy – but was ready to come home. My husband and I spent the week much like any other – working late, going to sleep early… learned we’re a pretty pathetic couple when it comes to going-out! By 9pm, we’re exhausted & ready to catch some z’s!

The walk is coming up on Saturday. I’m hoping that I can bank some energy this week & make it through the weekend. Goodness knows that I seem to be running on fumes yesterday & today… praying that isn’t a ‘sign’ that MS is about to rear its ugly head once again.

I’ve been on Gilenya now for nearly 4 weeks. I have my follow up appointments scheduled for next week – though I may call the ophthalmologist & see if I can’t get in a bit early. My eyes have been killing me… hoping that means just a simple prescription change & not a bout of optic neuritis – as that would mean that I cannot continue on this medication… and that would be bad news.

Good news however is that the Folsom CA Walk MS event has surpassed its fundraising goal! That doesn't mean though that raising even more funds isn't important! So much research still needs to be done - and so many people still need vital help that the NMSS provides. You can even Donate by CC online. Every dollar makes a difference!

Committed

This past weekend, my husband and I attended a ‘round-table’ discussion with the National MS Society… to have an open dialogue with the MS Society regarding what the MS Community felt was needed – and ideas on what could be done to help the community as a whole. What a good time we had!

Before we delved into the discussion, our facilitator shared a few things with the group.

First – he wanted everyone to realize that one person CAN make a difference. He shared the Free Hugs video with our group to underline this.

Second – he wanted to ensure that the entire group understood the difference between being actively involved – and actively committed to what we were doing.  He shared a story (that according to my husband is a very old one) and analogy about the ham & eggs breakfast…

the chicken is involved – but the pig was committed – giving its all for that meal.  Involvement is great – but commitment is essential.

With that – we launched into a few smaller groups to discuss what we felt was our top priorities as the  MS Community… here was our list:

1 – a CURE and remyelination! Let’s find a cure for this crappy disease & put the NMSS out of business!

2 – More Transparent Therapy Information… whether it is on alternative therapies, nutritional, exercise, holistic, sharps disposal, etc.

3 – More FAMILY recognition. Get events & support groups that can include the entire family. (In our area, none of the support groups allow children… not everyone can afford a sitter all the time – and who says this disease doesn’t impact the child(ren) of the MS patient?  Furthermore, there is not a lot of ‘caregiver’ support – emotional support or otherwise.

4 – AWARENESS & VISIBILITY. Huge.  One idea from our group was to talk the SF Giants into sponsoring/adopting the MS Society… their colors are already Orange & Black… a Perfect Fit! J

I’m likely forgetting something – but there you have it. What we want… What we’re willing to be involved in… Now – the question is – what are we willing to be committed to? And how will we achieve these wants?

Well – I’ll tell you – I’m working on and committed to #3.  My husband and I will be working with the NMSS office here in Sacramento to begin a new “support group” that is family friendly. It may be just one group in the Sacramento/Natomas area – or a second group that would meet in the Roseville area too.   You’ll know when things get moving in that direction!

Gilenya, Saving, Meal Planning, and Cactus Chili... :)

Day two & three on Gilenya have been uneventful. :) That's a good thing!

I'm back at work - getting things done & planning away.

My husband is on a new kick - save, Save, SAVE... That's a good thing too! :) One way we're doing that is meal planning at home... trying new recipe ideas - so we aren't tempted (as much) to go out to eat. The other day, he made a Cactus Chili... different - but good! :) I know it is abnormal for me to share recipes here - but just this once, I figure it is okay...

Cactus Chili

• 2 – 5 lbs of pork butt or shoulder roast (this can vary - depending on how 'meaty' you want it. We used about 3 lbs.)

• 1 large can of green enchilada sauce

• 1 can of refried beans – (for thicker chili – you can use a larger can.)

• 1 jar of Nopales - Drained. (in Mexican food section of grocery store)

• 1 large sliced onion

• Salt & Pepper & Garlic to taste.

• Cumin – about 2 tsp.

Cut pork into bite size pieces & brown with salt & pepper. (Do not cook through… just brown lightly). Add pork, drippings, & all ingredients together in crockpot. Cook on low for several hours (we threw it together first thing in the morning & let it cook on low all day while we were at work.)

Serve over rice & with tortillas. Top with sour cream & chopped green onions… (If you like heat – you can also top with diced jalapenos.)

I will admit - I was extremely skeptical about this one... but it was wonderful & many in my office have enjoyed it as well. :) I hope you take a leap & try it out... you may find something new to add to your dinner menus at home too. :)

Successful day one on Gilenya.

Okay... Spent the mandatory six hours at the doctors office today. Boy, that was brutal! Six long hours of near silence in a room with a long table and no windows. Internet access was sketchy. No music. Dim lights. Ugh... Reminded me of a few dreaded Saturday school sessions I had to do when I was a freshman in high school... Only the Saturday school sessions were more fun.
Took the pill about 830 and had my pulse and blood pressure taken every hour. No issues for now.

Realized how much I love my husband as he endured the long boring day with me - only taking a break from the dungeon to find me something good to eat for lunch. One other woman started Gilenya today too. Her sister came with her and complained about being bored most of the time. I considered myself lucky. I know my husband was bored too, but he never complained about it.

As I struggle with this touch screen keypad, I am sitting at my daughter karate dojo. Life has resumed its crazy schedule and tomorrow will be just like any other day...

Celebrating a successful day one on this new needle-free multiple sclerosis treatment. :)

Reflecting

Sometimes we can get so caught up in moments of self focusing that we fail to see all of the positive things surrounding us. 

I have been so caught up in all my medical appointments and the stress surrounding the start of this new medication. Friday at work I chatted it up with a friend that recently found out her fiancee has an inoperable brain tumor. They are in the early stages of diagnosis and don't even have a firm treatment plan in place yet. How scary is that?
Now I may not know what is around the corner for me day to day, but I can only imagine what she is going through right now. To not know is so much more scary. Your mind can run a million miles a minute and for some reason human nature tends to point our minds to the worst possible scenario. The internet doesn't help much either... There is so much information that isn't always accurate and can feed our fear.

I think the most important thing anyone can do is to take time to focus on positive things especially when the stress of a situation or diagnosis begins to overwhelm and dominate our minds. For example, my friend said that this diagnosis has repaired a broken family, brought friends out of the woodwork they  didn't know they had, and forced her to focus on the truly important things.

So often we expend energy on things so petty. When faced with something truly serious we are forced to re-evaluate everything.

Maybe that is part of the silver lining of a horrible situation...

Okay - so I had to share this one...

I've been pretty vocal about the start of the new medication, Gilenya.  When the doctors office called to schedule the appointment, they wanted to make 100% sure that someone would be with me the *entire* time I was there.  When I asked if it would be okay if someone dropped me off & then came back to pick me up - I was told 'absolutely not'.  I pushed - and asked 'why'?... their response - 'well, if you flat-line, we don't want you to be alone.' 

ahhh... sometimes I really don't think they realize what they are saying!

***for those of you that are concerned right now, please don't be.  I've been on this medication before... actually when I started this blog initially I was preparing to be involved in the medical trial for the medication. I was fine then - and I'll be fine now. :)***

Back to the real world.

Well, we survived Disneyland and all the long hours of walking and standing in lines for over an hour to sit on the one minute ride. Kids had a blast though and that's really all that matters. We made a lot of great memories.
Made it home only to end up with a flat tire on the truck. I can't believe how expensive tires are for the beast. YIKES! ! ! Oh well... So much for getting ahead financially. Just happy we have enough in savings to cover the cost.
Right now I am sitting at the doctors office waiting for my follow up appointment. Seems I have a lot of these. Next week I start a new medication and then will have this whole slew of appointments all over again. Oh well. With all the waiting time, I just may master typing on this phone yet! :P

Gilenya is scheduled!!!

Super excited to announce that I have been scheduled to take the first dose of Gilenya on Tuesday March 29th. I will be spending the 6 to 7 hours at the Sutter neurology office downtown. Randy will be coming with me too, so I won't be alone all day. So ready to start back on med again and totally thrilled that I won't be looking at needles at home anymore. :-D

Vacation!

Super short post... Vacation, Here we come!!!

The saying has always been “when it rains – it pours!” Dear Lord – I’m praying for a freakin’ drought right about now!


Last week I had had enough – and called my neuro to request a one-day kick dose of solumedrol – thinking that might help ‘tide me over’ until I start on the new meds. Well – she called me in a 3 day stint – which looking back now was a good idea.

Hmm… where should I begin – maybe at the beginning I guess.

Friday afternoon I had dose 1 of solumedrol. Nurse was unable to get the vein & poked around for a while... this left a very unwelcome & painful bruise all over my forearm. Went home – crashed into bed – and was up at 1am with the delightful ‘can’t sleeps’ of steroid treatment.

Next day (Saturday) – dose was scheduled for 730am – so back to the hospital super early for dose 2. This time they use the veins on the top of my hand... ouch - but she is successful on the first jab. Now – Saturdays around our house are crazy – and this one was just like any other: taking the car into the shop, running errands, playing with the kids, and getting ready for a dinner party with friends that afternoon/evening. Shortly after dinner though – we end up in ‘crisis mode’ when we have that dreaded head bug scare. *sigh*. We abruptly leave our friends house – stop at the pharmacy on the way home & drop about $200 on treatments. At home, I go into panic mode & strip all the beds – everything washed & bagged & super deep cleaning. By the time I crash into bed – it is nearly 1am… meaning I was up for pretty darn close to 24 hours.

No rest for the weary though – because dose 3 on Sunday is scheduled for 830. So – up again early and back to the hospital. This time - they try for the top of my hand again - but the nurse 'bursts' the vein - and ends up having to place the IV in the crook of my arm (I do not recommend this!). As soon as that’s over, its back home to continue with my mad cleaning. Toys are bagged up – laundry is going – the vacuum is running. Go, go, go, go! Non stop. Re-treat (just to be safe) each of the kids noggins. Take both kids in to have their hair cut (to be safe) and keep trying to get everything done. My husband and my eldest daughter aren't able to check my hair - but my *amazing* friend was willing to take the time to do it for me. I don't know what I would have done without her. So totally shocked at the goodness of people.

Miss work on Monday and Tuesday – because I still haven’t recovered from the solumedrol doses – and on top of that – I have a house to clean! The complex we rent from is doing unit inspections this week too – so it’s a double deep cleaning. We’re not messy people – but with so many bags of toys laying around right now – it looks horrible! *sigh*

Wednesday I make it back to the office for a few hours. Try to get caught up on a few things – but that seems to be a never ending & impossible chore right now. Wednesday night my husband decides to take us all out to dinner – after the extremely stressful few days we’d just survived. I remember thinking when driving home that I was *finally* starting to feel somewhat normal again.

So – today is Thursday. Still not back to 100% - but I’m working on it. Time will only tell.

Oh yeah – did I mention that on Sunday we’re leaving for a weeklong vacation & taking the girls to Disneyland?

Yep – as my little one likes to sing during storms “its raining, its pouring…” here’s hoping I can survive and still have ample energy for next week too.

I’m not gonna stop asking God for a drought though.

Pondering Support Groups

I've been contacted and asked to consider help starting a new local MS support group. As I look at the support groups we currently have in this area, the big thing that jumps out at me is that they are lacking a group that will allow a place for the kids to play during the meeting (I know that is the reason I'm not able to attend any of the meetings) - or further - incorporate the entire family into the support process.

As I continue to ponder this request, I'm wondering (and hoping) I can get some feedback from a lot of you.

Here's just a few of the questions I have right now:

1. Do you actively partipate in a support group (other than the online communities)?
2. If not - why? Is there a specific reason with the support groups that is the missing link for you?
3. If you do - what are the high/low points of your group?
4. How often do you meet? / Do you think that is too much/not enough?

Thank you everyone! I look forward to hearing your feedback.

 

 Please note - if you're not comfortable with posting publically, please feel free to email me directly... kristie@xoutms.com :)

 

An Open Letter of Apology (and an Update too)

I can’t even pretend at this point that my ‘slippage’ in life hasn’t been noticeable. I’ve seen it myself & it kills me. I’m seeing that I’m not at good at remembering things – my speed in completing tasks is slowing – my multi-tasking abilities are declining, my vision fades in and out when looking at the same thing for too long, and my energy levels seem to be non-existent more frequently.


For all of this – I apologize - to family, friends and coworkers.

It’s apparent that not being on any MS medications since early Summer – and losing my frequent IV solumedrol treatments (as of December) – is catching up with me. I’ve been fighting to begin the oral treatment that was released to the market last fall – and as I’ve updated you before, it appears that I may be in the home stretch of that battle… thankfully – on the winning side too. I still don’t know what my cost will be on any of that – but that’s a discussion for me to take up with San Francisco on another day… (let’s just say that I’ve been given instructions from our WECO benefits department that I’m no longer to call our pharmacy coverage plan. Seems no one can understand why a person would get frustrated when they can’t get a straight answer on their coverage from anyone.)

Here’s where I am as of this precise moment… I completed the appointment at Ophthalmology on Friday – which was the last step before I can be approved for scheduling to start the medication. I’m hoping that by the end of next week I’ll have received a call with instructions on the ‘next step’.

In the mean time, I began a 3 day course of IV Solumedrol (steroid) treatments again Friday afternoon (thus the wee hour posts…). We’re hoping that this burst of steroids will help diffuse the current symptoms I am having and help things ‘fire’ more accurately… until I’m able to start on a MS treatment plan again & get things once again under control.

At this point – I’m an open book – so please don’t hesitate to ask my any questions on anything here. I’d rather give the answers to any questions – than have a thought hanging around that might not be accurate.

Respectfully,

Kristie

Gotta Get Back on Track

Have you ever had that feeling that something just wasn't right?  I've been having that for a few weeks - but it was that there was something not quite right with me.  Odd sensation to feel yourself slipping away. 

I've seen my multi-tasking abilities go out the window - along with my stamina and ability to get everything done for everyone in a slick minute.  Am I just getting lazy - or is my MS creeping up on me... I have been off treatment for a little over 8 months now.  Maybe it is a little of both.  I'm putting an end to that though.

My vision has been off - my dizzy spells have been odd - my balance is nearly shot. All that - and I'm supposed to be getting ready to take my 4 year old for her Disneyland debut in under 2 weeks! YIKES.  Something has to give.  So - I put a call (well, email actually) into my neurologist - requesting a dose of solumedrol.  She responded so quickly - and I'm scheduled to begin those in just a few hours.  One dose a day for three days.  The only stinker with that is that it means spending a little over an hour in the infusion center every day... and my bodys immediate reaction to solumedrol can be iffy.  There goes my weekend... and unfortunately - my husbands & kids weekend too... I'm hoping I can change that & won't have such a bad reaction to the first dose - but I guess I'll know soon enough.

In the meantime, I've tried to work by butt off at home today. Bed sheets are stripped, laundry has been started, kitchen cleaned, floors & stairs vaccuumed... hopefully that will help ease a bit of the stress for the weekend... In just about an hour I should be meeting with the eye doctor too... the last step before I find out if I'm completely 100% approved to start on the new MS oral medication - Gilenya.  I've resigned myself to the fact that this just might not happen - and if it doesn't - I think I'll be okay with that... doesn't mean I'll be excited about getting stuck with a needle all the time - but one way or another I know my body is telling me it is time to restart treatment again - and the sooner the better for everyone.

Well - there's my rambling post for today... told ya - my brain is a bit scattered lately.  hopefully with this steroid boost, I'll be back to my old self and be ready to conquer whatever lies ahead!

Lately

The last few weeks have been rough MS weeks for me. Too much self inflicted stress. Trying to do to much and take care of everything for everyone at work.

It is very humbling and difficult to accept when you realize that you just arent the same person you were two or three years ago.

Last night was a very teary night in my home. The realization that I just couldnt do something I had committed to doing. I was unable to make a meeting and there was no one to blame but myself.

Somehow I know it would have been so much easier for me if I had to miss the meeting because of someone else. Honestly, if one of my children didnt feel well I wouldnt beat myself up over that. That cant be controlled.

Add to that, my daughter asked to be carried upstairs to bed last night. I just couldnt do it and told her I didnt feel good. "You NEVER feel good!" she said before she stompped to the stairs on her own.

For some reason I still believe that I should be able to control this MS beast. I will - dont get me wrong, I will never stop trying to defeat it, but I need to start looking again where I spend my time and energy. Those things need to be in the proper priority order first.

Anyway... Hopefully I will be able to start on the new medication soon because it really sucks to know there is something wrong... to feel something wrong and not be able to do a darned thing about it.

Insurance Run Arounds

I'll start by apologizing... this post is more of a book - so feel free to click off of this blog post now... however - if you enjoy drama in any fashion - well, this blog post just might be right up your alley.

My company, and I love the company I work for, recently switched around some of the insurance coverages we have. We still have the same medical coverage – but the switch has been with the prescription portion of our plan. I’m in a complete nightmare trying to figure out something as simple as a drug co-pay with them. YIKES. I’ve even had to get the company benefits coordinator involved to try to get this straightened out – and still I’m stuck.

It all started when I wanted to find out the copay on a specialty medication (Gilenya – the new MS drug) – and request a refill of another specialty medication. While I was on the phone with them, I figured I might as well get the spelling of my daughters name corrected – so it didn’t cause problems with any possible prescription claims… I couldn’t get anyone in customer service to help me – because I wasn’t authorized… so I emailed our company benefits coordinator:

(2/10)
Who do I contact to get corrections made to our prescription benefit plan? They have my daughters name misspelled – and an old address for me. Each time I try to correct that – I’m told I’m not authorized to correct her name spelling – and with the address, well, that keeps getting changed back to the old one for some reason.

On a side note - I’m sure you’ve heard from others about this change to express scripts for pharmacy coverage… well, while I appreciate the coverage from the company more than even you can imagine, they are such a headache to deal with on the customer end. I spoke with a representative then was placed on hold – for more than 20 minutes yesterday before I gave up. All I was looking for was copayment information & attempting to place a refill order of a specialty scrip. Today it was nearly 30 minutes to get the copayment for one common drug – as the site says to call for nearly all meds I look up.

The response I received was focused solely on getting the name & address corrected – but nothing regarding my issue with the prescription coverage company. So I emailed again (portion follows):

(2/14 @ 11am)
...Also – I don’t know if there is a representative you are able to contact or not – but when speaking with Express Scripts pharmacy customer service department last week, when I was trying to confirm a specialty drugs coverage & my copayment, I was told that I would need to speak with my insurance company to find out that information. They were taken aback & disagreed when I told them they were my prescription coverage company! They actually told me I would need to speak with ‘Wilbur Ellis’ to find out what my coverage was. I had to correct them again & say that Wilbur Ellis is my employer – not my insurance company. Yikes. I still don’t have confidence that I have accurate information – but I have no other numbers/contacts to use. And – I’m still unable to get someone to help me get a refill on a prescription. Hopefully my lunchtime calls today will be more productive.

The response this time was a little more focused – and asked if I had any luck. I hadn’t.

(2/14 @ 3pm)
Thanks for getting back to me. I did not have the opportunity to make the call again today – as work duties snuck up on me & I’ve been trying to get a few things cleared off my task list before I start training a new-hire tomorrow morning. I may try to give them a call tonight on my drive home – however, if you can forward my email to your rep, that would be great. I can’t tell you how shocked I was when I was told that I needed to contact Wilbur Ellis to find out whether or not a certain drug was covered & what the copay would be. It’s kind of concerning when your insurance company doesn’t know they are your insurance company… know what I mean?

The response was prompt (as always) – but concerning to me… I was asked for the date/times I called (no problem) – and the medication names I was inquiring about (red flag to me). But I was told she would have our account manager look into it – so I complied… plus, I’ve been pretty public with a lot of this info anyway… here's my email:

(2/15 @ 7am)
I called in to Customer Service on 2/9/2011 – right around 5:45 the first time. I spoke with a CSR, then was placed on hold while they ‘looked up’ information for more than 20 minutes – so I hung up. The CSR only checked back with me one time during that 20 minute hold time (about 5 minutes into it).

The next call was on 2/10 – just before I emailed you.

Unfortunately I got pretty sick last Friday and was down for the count all weekend – not really surfacing until yesterday.

The medications I’m looking for are Avonex and Gilenya.

Thanks again for all your help.

Now – I hear nothing. I get no response. So I email again today:

(2/18 @noon)
I’ve been on the phone again today – more than 5 phone calls & no less than 2 hours – with both Express Scripts & Curascript. No one can even figure out what plan or coverage we have! I’ve never been so frustrated. Who else can I call to try to get some answers? Each time I call, it’s a completely different answer – and I don’t know what to do.

And again

(2/18 @ 12:30)

I’m very sorry for the bombarding of your email box with this issue. When I hit send on the last email, I was still on the phone with express scripts. Once again I was told today that I needed to contact my insurance company, “Wilbur Ellis” to obtain copay information for the specialty medications I was inquiring about. I asked to speak with a supervisor – or someone that would be able to escalate this issue. The supervisor I spoke with told me that Express Scripts is not our prescription insurance carrier – only a in-between/processing desk for their insurance client, Wilbur Ellis – and that their system shows that Wilbur Ellis is my insurance provider. I was completely frustrated at this point & asked for their ‘grievance’ number – in order to try to escalate the issue within their company further. The number they gave me (877-230-0281) is the customer service number to Anthem Blue Cross! When I called, they looked up the account & said their records shows that Express Scripts is my prescription insurance carrier & gave me the number for Express Scripts once again.
I’m stuck in a very ugly loop here & can’t make educated medical decisions for myself at this point. I’m literally at my wits-end. As a Multiple Sclerosis patient, I need to get these answers so I can get back on a treatment plan to battle this disease. I’m continually hitting brick walls here & need some guidance regarding our coverage & who to call for educated & accurate information.

I'm so confused & angry - I have no idea of who to contact - or what to next. In the interim - until this is resolved - I have zero access to medicine. Don't know exactly why I'm sharing something so private - very publically - but I guess its my way of venting.  Here's hoping all is resolved soon & I'll be able to get back on some kind of treatment program.

4-Letter Words

Today I had to do something that I never thought I would.  I sent my husband (at work) a 4-letter word message.  Just 4 letters. At a point where I didn't know what else to do - scared to no end - the world around me spinning faster than I could handle - and the only thing that popped into my head & that I was able to communicate was a dreadded 4 letter word. 

What was it?

Help.

That 4 letter word for some reason takes so much for me to ask for - and when I do, I feel almost shameful.  It's literally acknowledging that I can't do it on my own & I need someone else to assist me.

Super frustrating.

Then - my husband appeared at my car window - tapping to get my attention as I lay there with my eyes closed to the spinning world around me - and I was filled with the realization of another 4 letter word that I like so much better.

Love.

Child-Like

There are days (okay - weeks/months) where I do everything I can to firmly - adamantly - deny that I have MS & convince myself (and others) that the doctors, scans, & spinal taps were all WRONG. Yeah - well - at least I try. I sit here with the child-like mindset that if I keep my eyes averted - or covered - and I can't see it - well, with child-like wisdom - it just isn't there and doesn't exist. That would be about the gist of my existence over the last few months. I'm feeling better - joe-blow can't see any obvious problems (no cane, braces, etc.) - so I must not have MS, right? If only!

I have RRMS - and quite honestly, its the periods of when the disease is in remission that I am able to play my little ignoring game. When I have a relapse - well - there's no possibility to deny its existence. As of late summer, I've stopped taking all MS meds - much to my neuro's dismay. okay - and my husbands too. But if I am to be 100% honest with myself & everyone around me - I'm on zero meds and feel better now than I have in years - so restarting on drug is not something I'm agreeable to at all.

You know - as bad as this sounds (and I am prepared to be berated about it), sometimes I just wish that this dang disease would make up its freakin' mind - either go away for good - or get the show on the road. (I know I don't really mean that - but good grief - who likes not being in control of their own body- or even know what lies around the corner?) I don't like the uncertainty - I don't like not being in control. To me, its like driving a windy road in the dark without headlights - but that seems the be the nature of MS.

So - like any child, I over control the things in my life that I am able to - i.e. meds.

Yeah, yeah - its time to grow up - drugs are ordered and should be delivered next week - but for just a little while longer, I'm going to keep my eyes averted - or covered - and in my very child-like manner - just pretend that I don't have this disease... for a little while longer.

Be Careful What You Ask For

I can remember being told – “Be careful what you ask for…” The biggest example I was given – was with Patience… when you pray for patience, well – you’re put to the fire & tested… and at the end of it – hopefully you learned that you have to have patience in many situations. Well – I never wanted to go through the fire & testing – so I’ve never actually prayed for patience… that doesn’t mean that I never went through some trials – but – I never went specifically in search of learning/obtaining more patience. (My children can attest to that!) But – I’m getting away from my intended subject matter…



I write this specifically in regards to my life with multiple sclerosis. In the summer of 2010 – I went through a period of time where I literally could not feel my left leg – at all. It was there – it just didn’t register. I recall one neurologist at a university - that may not of completely believed me – who actually drew blood by poking my foot with a safety pin needle… Anyway – I remember whispering thoughts, prayers, and wishes – that I could feel my left side again. It was truly troubling to me that I couldn’t feel the touch of my children – or my husband – and I longed for sensation to return. Well – my prayers/wishes were answered… I can feel my left side now – but I feel everything wrapped in a thick layer of pain. It’s a pain the most OTC pain relievers can’t touch… you see it’s still related to the MS & some pesky misfiring nerves.


Moral of the story: I just need to be a bit more specific when I send up those whispered prayers… “please let me feel again – the true sensation of touch & control – without the caveat of a layer of pain.”


We’re working on finding the right medication to help alleviate the nerve miscommunication – but in the mean time when people say “It’s all in your head” – well – I just have to agree. 

Frustration

Okay - so I disappeared again for a while...  The holiday season (I consider that to be Halloween through Valentines Day) has been exhausting. 

Today I'm taking some time to catch up on the things that are important to me.  (warm & fuzzy, I know)

Anway - I'll jump into things... I'll admit that my MS has progressed some this last year... the relapse I had in June still likes to rear its ugly head & remind me that it's not completely gone & I better get used to it being with me off and on. A few new symptoms are appearing - one that I call my 'brain-pain'... which just means I'm experiencing pain for no apparent reason - and I can't explain it and none of the OTC pain killers have done a thing... thus the name 'brain-pain'... I think it sounds better than just saying it's all in my head...

My medical experiences the last two months have been horrible for some reason... let me share:

I had a MRI mid-December - and was instructed (for the first time ever) to completely disrobe...  Are you kidding me?!?!?!  It's not my first time at the rodeo - and it was my brain they were taking pictures of. I don't wear bejewelled jeans - or jeans with a million zippers & metal studs.  I  wore a sports bra - a sweatshirt - jeans - socks & tennis shoes.  In all my prior MRIs - I have been asked to remove my shoes - but never been asked to take all my clothes off.  When I questioned the technician on this, I was treated so rudely I was stunned.  I was tossed a gown & told to change.  What choice did I have - I needed to get this completed before my next appointment. I changed as 'ordered' - but refused to remove my bra & put my sweatshirt over their 'gown'.  Then while I waited - I heard the technicians talking about "the patient that refuses to change because she thinks she knows more" than they do. Ugh.

Fast forward a few weeks - and its time to meet with a neurologist to review the results & put together an action plan for going forward. My regular neurolgist is out on maternity leave - so I needed to meet with with her colleague.  I have *never* in my life experienced such a useless & disappointing medical appointment... if it was any other service - I would have asked for my money back!  The doctor came in the room - did a brief exam - told me my MRI had "countless lesions".  He asked what medication I was taking - and I told him I wasn't taking anything - because I was waiting for the new oral treatment to become available - which it was at the time of the appointment & I'd like to get started on that as soon as possible. His response - "well, you're a good candidate for that and I'm signed up to perscribe it, but I don't want a patient sitting around in my office for 6 hours for observation and that is what is required for that medication... just come back as soon as your regular doctor is back - she'll be back the first of February." With that - he left the room.  Less than 5 minutes of face time - and not once did this doctor even look me in the eye when he spoke with me.  I wanted to shout at him "Am I wasting your time? What kind of doctor are you?"

So - here I sit - and wait - for my doctor to come back from maternity leave.  Still on no meds - still in pain.  Completely disappointed that there are doctors out there that make the money they do while being completely useless to the patient sitting in front of them.