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.