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.

An Open Letter...

Today's post is long... likely too long for this page - but something I feel driven to share...

My post today is a copy of a letter I wrote to a would-be “miracle-cure” salesperson that bombards numerous sites with advertisements – in the hopes of making a little more ‘green’ for their pocket.

Granted, this specific letter was written nearly a year ago – but as a MS patient – it seems that no matter where I go I’m given suggestions to try this or that to make me ‘better’.  I don’t want to be told that if I just drink this rice water – or take this vegetable pill – or drink this specific juice – that all my symptoms will go away & the disease activity will cease – without some scientific proof to back it up.

Now, when the suggestions are coming from people that are close to me, well, I understand that they are doing it with only the very best of intentions & the love that flows from them makes their attempts a little more understandable.  However, as I’m sure many other MS patients would agree, the offers that come from all other sides and can be completely exhausting.

Like I said, this letter of frustration was written just over a year ago – and was in response to some very interesting bulletin board posts going back & forth between the salesperson & some questioning group members. This specific salesperson was not prepared to be questioned & got quite upset with the group for not taking the bait.

Dear 'Miracle Cure Salesperson':

I generally refrain from responding/commenting to these types of ads on discussion boards – however - after the 'holier than thou' type of response we've recently received from this salesperson when they were questioned, I could no longer keep my fingers from clicking out a bit of frustration on the keyboard in front of me.

Let me try to explain something to this salesperson. As a MS patient myself - after diagnosis I scoured the Internet for any information on various treatment options I could find.

There is a LOT of information floating around the Internet on miracle cures – between diets, treatments such as the one you are touting, and "amazing" detoxification methods that will supposedly ‘cure’ multiple sclerosis.

While it may be somewhat exciting and offer some much needed hope for people that live with this disease – I have to be honest and say that some of the things these people (such as yourself) are touting are really quite scary and offers a very false sense of hope and expectation.

I can assure you, dear salesperson, that if any one of the people selling these ‘miracle cures’ (including you) actually had a true and viable cure for this disease – it would have a whole lot more attention than an occasional blip on an internet search engine of your postings on various internet blogs/pages/bulletin boards.

Quite honestly (if you can’t tell already) these people completely disgust me.

Salesperson - I imagine that you must have some level of belief in the product you tout - but you must understand how completely tired people with MS are from hearing about "the next amazing cure." So many people have been bombarded with these claims that "if you just spend X amount on my product you will be cured" - that is almost as insulting as saying "if you just had enough faith you would be cured" or telling me that "if you had just eaten more veggies when you were little you would never have been plagued with this disease."

I have a hard time believing that you've never met such an angry response. Maybe that is because other sites have just had your postings deleted & your userid to their site blocked immediately. In a way - I'm glad that you are actually receiving some honest angry responses from people that are just sick and tired of hearing claims similar to yours.

So in conclusion salesperson - let me just say that I didn't join this group to hear about a "miracle cure" - but with the hopes of connecting with others that understand exactly what I go through on a daily basis. You clearly don't fit that bill as you have absolutely no connection with this disease and in all appearances are attempting to take advantage of people that are desperately seeking a cure for this currently incurable disease.

I generally close emails with good will wishes - but as long as you are in the business of touting/selling your so-called miracle cure, I have absolutely no good will wishes for you right now. It is hard to find any good will wishes for someone that doesn't see the person with the disease but just the money they can make off of that person - touting a "miracle cure."

~Kristie

Yep – I was angry when I wrote that letter.

MS & Meds

I have MS... (warning - grouchy day post!)

Seems that when I was first diagnosed with MS I was all gung-ho with anything & everything I could do to combat it.

I was following the strictest diet, taking just about every vitamin anyone would suggest, on the injection medication, receiving steroid infusions at the first sign of a relapse, taking pills to help with the wonderful acne-type side effects you can get from the steroids, another to ease the nausea, more pills to help me sleep, one to help me stay awake, and others to combat the pain... this list could go on and on and on.

It's like this vicious game of intertwining drugs & their various side-effects/reactions... where does it end?

Sometimes I have to wonder - what's the point? If I am on one medication specifically for MS - but I feel like crap from the side effects & have to take 15 other pills to try to balance that out - which one (MS or Meds) is doing my body more harm?

I'm at the point right now where I'm tired of supporting the various drug companies & pharmecutical representatives. The CARB drug manufacturers will tell you that their medication isn't a cure - but only that it may lessen the impacts of outward relapses or possibly slow the disease progression slightly. 

I just want something that works... something that doesn't require needles - and doesn't come with a cabinet full of other medications.

I just want to be able to be a mom to my kids, a girlfriend to my husband, and a great secretary for my boss. 

I don't want to have to spend more money on medications than some families spend on groceries.

Is that too much to ask?

Exhausted. Jumbled.

What a jumbled week this seems to have been... It has flown by so quickly - yet Monday seems like a really - really long time ago!  So - I thought I'd recap a bit here & maybe I can figure out where I got mixed up...

Monday -

I worked in the morning - met Erin (my friend that works for NMSS here in Sacramento) for lunch - then headed to the Sutter Roseville hospital for my steroid infusion (that makes me feel like crap). Hurried home after that to meet with two physical therapy students from Sac State for their 'in-home' visit & showed them how I move around in the apartment... after that - tried to prep dinner while my husband was at Karate with the girls - only to find out that our chest freezer was turned off(!) so I had to empty it out & try to save and cook as much from it as I could (let's see - 4 boxes of taquitos & 2 boxes of popcorn shrimp, two whole chickens, breakfast sausage, smoked sausage links, etc.).  exhausted. *sigh* did I say steroids make me feel like crap?

Tuesday -

still reeling from the steroids but back at the office dark & early. Worked all day preparing for meetings & events taking place the next day. Lots of computer reporting, emailing, phone calling, etc... then met with two wonderful ladies for an after work planning session organizing the Folsom Walk MS event taking place in April. Home late but in time to tuck my kiddos into bed & exhausted crash into bed myself.

Wednesday -

day one of the meetings... in the office making last minute adjustments to presentations, plus printing reports and handouts. Then it was off to the hotel/meeting site for setup & meeting kickoff.  Work from the hotel lobby while waiting for the caterer to set up & squeezing in the last minute guys that didn't initially reply about staying the night at the hotel. Took a lunch break to meet with a friend that is moving away (sad). Touched base with the restaurant and transportation company regarding their dinner that night & tried to get home at a decent time. Visited in the evening with our friend again and along with the rest of my family said our goodbyes. exhausted.

Thursday -

back & forth from the office to the hotel in the morning for the last portion of the meetings... had to meet with another trainer to finalize more meeting arrangements for next week. Ended up running late & had to get my oldest daughter dropped off at karate - then hi-tail it to the preschool to pick up the little one & get her back to the dojo for karate class on time too.  Finally home about 5:30 & exhausted...

Friday -

today - drop little one at preschool & in to the office before 7.  One meeting outside of the office this morning & then back to the grind prepping for next weeks meeting.  Still have to make it through the day & figure out what to make for dinner.  still exhausted.

My brain is a jumbled mess & I'm having troubles focusing on one thing for very long - in fact - I'm surprised I got this written!  So - before my jumbled brain starts to hurt, I'll sign off... with two words which seem to sum up my entire week thus far:

Exhausted.

Jumbled.

Always,
~Kristie

October

Ask anyone anywhere & they can likely tell you that October is not only Halloween for the kiddos – but Breast Cancer Awareness month… how can you miss it, right? – with all the pink inundating us nearly everywhere we go. I bet even little tykes could tell you that October colors are ‘orange, black, and pink’!


My 11 year old daughter notices this & has asked me why MS doesn’t get as much attention as breast cancer or MDA or even HIV/AIDS. “It’s not fair!” she says. This is something that frustrates me a lot as well & I had to really think about the answer to her question.

The diseases that seem to get the most public attention are the ones that have somewhat of a more defined disease progression/course. As crappy as that is – we all know that is pretty darn true. There’s a set disease progression/path. There’s a set & consistent treatment plan. There is more publically ‘known’ than ‘unknown’. Don’t get me wrong – they are serious & deserve a cure… but so do we!

I honestly think it is because no one likes the unknown. It’s human nature. And for the majority of society – MS is a big ‘unknown’.

I’ve decided that MS is too much like playing the slots. As someone with MS – one day we can hit the jackpot – be up and moving around like anyone else. The next morning, we’ve lost big-time – our legs may decide not to work – or our eye sight will crap out on us. This can last a few days – to a few weeks – or longer. If we’re lucky we again hit the jackpot! and we’re back to moving around like anyone else once more.

As much as I find that the silver lining so far within this disease – I also find it to be one of the hurdles when raising awareness. Because there are so many ups & downs like that – in such big arcs – way too many people mistake that for something as simple as ‘lazy days’. That’s where I think we as a community of individuals facing this disease need to band together even more.

Moms are a powerful force. We all know that’s true. (Show me one Mom that will sit by & watch something harmful happen to a child if she has the power to stop/prevent it.) So – first as Moms – we group together on the site – http://www.momswithms.com/  We support, uplift, and encourage each other. We provide a place where Moms can come ask those questions that they might not otherwise not ask if they were in mixed company – and they can receive feedback from someone that understands only like another mother can. The site can give other Moms strength to go out and educate others though too.

So who knows… maybe in the next year or two – we’ll see banners inundating our local businesses for MS Awareness month… wouldn’t that be great?! That’s my goal. That’s why I share my stories – my thoughts – my path – with others. I’m pretty much an open book when it comes to my disease path so far – and it is all with the intention and desire of raising awareness… taking out as many of the questions marks as possible.

If you are a Mom with MS - I hope you come & join us in that wonderful community… If you’re a do – I can attest – you’ll find something/someone helpful there too.

Always,

~Kristie

Metal Mouth

When you were a kid, did you ever put a piece of something metallic in your mouth? That wonderful metallic taste is the flavor that wipes out everything else for me when I have my solu-medrol treatments.



Solu-medrol is an intravenous steroid that is supposed to help keep the MS inflammation at bay & is frequently prescribed to help shorten the length of time a person is impacted by a relapse.


Today I am sitting at the infusion center – with the IV tubing sticking out of my hand & wishing I still had the taste of the eggplant I ate for lunch – as opposed to this wonderful metallic flavor I will now enjoy for the next day or so.

While I hate the taste - I keep hoping that this drug will work & keep the disease at bay... :)

My MS Story - Revisited

You know that tingling feeling your feet have after they've fallen asleep and start to wake up again? Imagine living with that all day - every day. I do.

Imagine sitting at your computer - and all the sudden you can't see a thing. Everything is complete fuzz and very, very dark - and you don't know why. I will tell you first hand - it's excruciatingly scary.

I was annoyed/scared enough to see my family doctor (John Doolittle - no jokes please). He is absolutely the best I've ever experienced. Completely unwilling to let things slide and a memory like an elephant! Based on this episode and other things I'd talked to him in the past - he was the first person to utter those words to me: "I think you may have multiple sclerosis."

Those words hit me like a ton of bricks. I did anything and everything I could to pretend they'd never been said. Ignored his requests to send me for more tests. Until this happened:

Imagine walking in to a room and finding the person you love on the floor - unconscious. I can't imagine what that moment was like for Randy (my husband), but that is what happened.

Obviously - these events turned into a lot of doctor appointments and more ‘suggestions’ that I might have MS. I wasn’t ready or willing to accept their “diagnosis” – so I ignored it somewhat successfully for 2 more years… until I started work for my current employer… In their attempt to add me to their drivers insurance, for the rare days I might have to drive a company vehicle, I found out that the neurologist I met with after my fainting spell actually requested the DMV put a medical suspension on my license… In order to have this removed, I had to be cleared by my doctor and another neurologist!

This led to my introduction to neurologist Dr. William Au. After multiple MRI's and one horrific spinal-tap, I was officially/formally diagnosed with MS in July 2005.

Randy and I met with Dr. Au and had a lot of our questions answered. We were given information on the various treatment options and told that we should decide if we wanted any more children before a treatment plan was started. (I know now that was pretty bogus information – but that’s another story.)

After a lot of thought, we decided that we were content with our family and I began a Rebif treatment regimen that September... only to find out three weeks later (SURPRISE) that I was pregnant!

Obviously - I had to stop treatment at that point until after the pregnancy.

After Heaven was born (May 2006), I joined on to a medical trial through UC Davis. The trial was looking into an oral medication (as opposed to injections). Unfortunately, after being involved in the trial for just under a year, I was ineligible to continue due to other complications and a low heart rate. [Looking back, even the UC doctors believe I was on the high dose of the medication (it’s the low dose that was approved & released to market). Plus – right around the time I got ‘kicked off’ – there was an incredible amount of stress in my life that alone could wipe out even the healthiest of people… so I blame my dismissal on that.]

I then began taking Avonex. Once a week Randy would give me the injections. I really am thankful for him... if I was left to give myself the injections - well - let's just say that it wouldn't happen. A few years & a new neurologist later - I’m still having relapses – so the Avonex isn’t working as well as we’d like… I’m currently off any of the CARB drugs & waiting (rather impatiently) for my insurance to approve the oral medication that’s been released to market. In the meantime, I’m going in once a month for IV-steroid treatment in an attempt to keep relapse symptoms at bay.

People ask me - how the MS affects my life - what symptoms I experience. The biggest (and most annoying) - Fatigue! This is the one that I hate the most. It has the biggest impact on my children and our family activities. Ugh! I can't tell you how often I'm tired of being tired!

The other main symptom I deal with daily is a major loss of sensation & strength in my left arm and leg. Let me tell you – this is pretty annoying… imagine your husband coming up – he caresses your arm or sits next to you & rests his hand on your thigh – and you can’t feel a darn thing… *GRRR* - kinda puts a damper on the intimacy sometimes. And again - *GRRR!*

There have been good days and bad days. Thankfully, the good still outnumber the bad! I sit back & take stock of my life & realize that I’m truly thankful for what I do have – what I can feel… so – I’ll fight. I’ll share. I’ll do what I can to empower others with this disease. I’ll find a work-around when tasks become difficult.

And most of all – I’ll live my life – not allowing MS to define who I am.

11! YIKES!

My daughter, Jessica, turns 11 years old today. 

Wow - I can't believe how fast the time has flown by.

So today - my blog post is dedicated to her...

Happy Birthday Jessica.  You're one of the big reasons I fight every day to be stronger - to be better. I love you with all my heart.

Spin Me Right Round...

You spin me right round, baby, right round -

            like a record baby, right round round round.

You spin me right round, baby, right round -
                          like a record baby, right round round round.

In the 80s - Dead or Alive lit up the radio with that song. Last night I think I lit up the other diners at a local BBQ joint with my 'literal translation.'

I'll explain...

I was completely fine all day. Ate breakfast & lunch - worked all day - picked my kids up & took them to their martial arts class... a normal day. Sitting at the table at a local BBQ joint - because I forgot to start the crockpot that morning - I was joking around with my family & munching on my daughters french fries while I waited for my food to arrive.

Out of the blue - the entire resturaunt start spinning & I couldn't even sit up straight. If my husband wasn't sitting next to me - I'm sure I would have crashed onto the floor - because I sure crashed into him with considerable force. My hands couldn't find the edge/corner of the table to hole myself steady & my mouth couldn't find the straw of the cup right in front of me. Darkness started to creep in on the edges of my vision & I instantly started sweating along with waves of nausea that rolled over me stronger than I've ever experienced before. My head went down on the table & I tried to will myself to balance.

It took about 20 minutes (although it seemed like hours) before the world stopped spinning. My kids were freaked out & my husband had stress written all over his face. Then the waves of guilt began. I looked around & realized how many people were staring & how uncomfortable this whole 'spinning ride' had created. Ugh.


The worst part - I still had to drive home! My husband and I had met up at the dojo after he got off work - so we had two cars out. I made both my kids ride in the truck with him & he followed me home. I don't remember the drive - but I know that I'm here now & the car is in one piece - so it must have been okay.

I've never experienced anything like that before - and hope I never do again.

 Today - well I'm moving a bit slower. My foot drop is back, my head throbs and twinges of dizziness still linger. I'm determined to make it through the day though. I have too much on my plate to creep out too early... not to mention a boss that is returning to town this afternoon after being gone for nearly 2 weeks. So - I'll do my best to make it through today & keep my fingers crossed that my world stops spinning once again.

"The Look"

There's certain 'Looks' that only people with an invisible illness such as MS are familiar with. Co-workers or friends or even family that is aware of the diagnosis have all taken part in sharing (albiet unwittingly) "The Look" with me. It's one of the things I detest the most about people knowing about my MS.


Now - this look comes in many different forms, right? For me, well there is the one that reeks of pity - the one that tells you they think you're putting on an act for attention - the look of guilt - and the one where people choose not to see you anymore.

None of them are easy to deal with.

The people I love the most in this world rule the "guilt look" unlike anything I've ever seen before. Lord forbid I have a relapse - or share with them when I'm having a difficult moment... that's the apparent 'green light' for them to paste this look on their face & in their eyes... makes me wish that I could snap a picture of that look & let them know it actually makes me feel like *not* sharing anything with them sometimes. I know they mean nothing mean-spirited by it - and likely have no idea how it is read - but its there nonetheless.

Co-Workers, on the other hand, are split into a few different groups. The core group I work with face to face on a nearly daily basis - they've accepted my disease & have been amazing... the ones on the outside of this core group - that are located in different offices I only have to visit once in a while - well those are the ones that either give me the pity look or the look that says "whatever - she's just looking for attention."


I wonder - what 'looks' others with an invisible illness get - and what they say? I'm sure there are more out there than the four I mentioned...

Don't get me wrong - there are good 'looks' too... Like the ones from my kids that say "I love you" even when I'm having a bad MS day.The look that hurts the worst though - is the look from someone I truly believed was one of those 'thick or thin' kind of friends - who now chooses to look right through me & act like I don't exist. Part of me understands - that dealing with this disease & accepting it is hard sometimes - and they just aren't really sure what to say or how to deal with it...

Haunted House

This week many communities are opening haunted houses for the Halloween season. One of my friends was going on and on about how much they enjoy the fright of turning that next corner & not knowing what will come up & scare the crud out of them. When asked if I was interested in getting tickets to go – I declined – as I’m not one that enjoys almost messing my pants from fright…(I didn’t tell them I have enough of the almost peeing my pants anyway…)

I’m sitting here at my desk & pondering the conversation we continued to have about past Haunted Houses they have toured & all the various frights they’ve endured with pride. My friend described lights blinking on & off with fog filling the air making it difficult to see – then something reaching out & grabbing them as they walk through darkened halls – with floors beneath their feet shaking & dropping a few inches causing them to lose their balance – only to be covered with lifelike spiders and the fake spider webs that makes her skin crawl. On and on she described all the horrors of not knowing what will happen next and the total relief when they reach the end of the path and know they are safe.

Then it hit me.

MS is like a haunted house.

The difference is – for us with MS, as of right now there is no ‘end’ (aka cure) to this path we’re on… at least, not yet.

Each day we wake up – not knowing what is around that next corner. Sometimes we get the crap scared out of us – when all of the sudden our vision goes screwy & we can’t even see our hand clearly in front of our faces. We may experience the pain of the MS Hug as they call it. Or – with no notice, our legs give out & we fall (which in-turn can become relief when we find out nothing was broken). Or – the tingles/itches that so many of us experience.

For those of us with MS, we live in a variable haunted house every day. We don’t know what may be around the corner for us… it may be a room that is completely calm with still waters & it may be a room where our legs don’t seem to hold us up like the should.

No – I don’t think I need to take the ‘Haunted House’ tour this Halloween – but I will keep trudging through my own Haunted House of MS – hoping and praying that the ‘end’ (cure) will arrive soon & fill us all with the relief we so much deserve.

Always,

Kristie

From the mouths of children

My daughter Jessica - who prefers to be called Jessi - asked me this past weekend if she could write an article for my blog...  A short time later, she came to me with this:

Having a mom with MS is tough.

You never know what is going to happen to them.

For example, mom will say ‘you can have a sleepover – if I’m feeling ok. But next thing you know, mom is saying she can’t breathe that good.

Also it puts you down. I go to middle school, but no matter how much fun I have, I always worry about her.

Plus I can’t imagine having no cure for a horrible disease. It’s not like cancer where it hits everyone the same – MS hits everyone differently.

I just hope all the people with MS will do ok… especially mom.


I'm a lucky mom - to have a daughter so amazing. She turns 11 this week - and I can't believe how quickly time has flown by.  I love you Jessica Lynae. You're a great daughter.

Acceptance

Funny - that one word can make such a huge difference in our lives.

Acceptance of the diagnosis is something I’ve been yo-yoing around with for the last 9 years. Somehow though - I have to wonder if I’ve ever truly accepted it. I was formally diagnosed with RRMS just over 5 years ago.


Does having RRMS make it a bit harder to accept? I say that because there are times in between relapses that I don’t even think about it & how my world may need to / has needed to change. On the flip-side of that – give me a bad MS day – and watch out! The tears are flowing, the anger is building, and although I received the diagnosis quite some time ago, it’s like I was just told for the first time all over again. The fear of the unknown.


I think (and hope) that I’m getting better with the whole acceptance thing. I’ve been open & honest with just about everyone with my diagnosis – maybe everyone but myself. I adamantly refuse to allow MS to rule my world – and for the most part I do pretty darn good at that… but it’s those brief moments of defeat – when I know that a side effect / symptom of this windy curvy life path we’re on has caused me to stumble that make me question myself.

Have I actually dealt with and accepted the diagnosis?


Which brings up even more questions – If I haven’t, do I even want to? If I fully give acceptance to this diagnosis – does that mean I’ve given in or given up? That’s a mental battle I fight quite often.


Then I step back & look at it – I believe one thing… I have accepted that I have a war to fight.


So – maybe that is what acceptance of this diagnosis is all about… I could accept & give in. I could accept & give up. Or I can accept & turn it into a battle cry.


That said - the war has started & the fight is on! :)