Wednesday, January 12, 2011

Update 1.12.11

Happy New Year!

Out with 2010 and in with 2011!  Hopefully this will be the year that I feel like my old self again. 

First, we had the blessing of welcoming our teeny little nephew, Easton on December 15th (Brad's birthday!)  We couldn't be more excited to welcome him to the family.  I have been busy sewing him little treats! 

Christmas was wonderful, and even better with the new addition!  We had such a fun time with our family and friends.  I even managed to have a little of my mom's famous Brandy Alexanders with ice cream on Christmas Eve, which I had been looking forward to for weeks!

I had a lot of vacation over the last 2 weeks of the year, which was fantastic.  I always love to have that time of year to take it all in.  New Years Eve, Brad and I had a movie night, and brought in the New Year on East coast time!  

This is a long one, so here we go! 

I am on week 6 of Methotrexate (MTX).  I have been getting incredibly sick after taking the medication.  Many people feel like shit for 24 hours after taking MTX, and some are totally fine.  I was fine on 6 pills and not with 8. 

This coming Sunday I am switching to the injection, and my dosage increases to “10” which equals 1cc, 25mg, 1mL (all of which are interchangeably used on the labels of everything so it’s delightfully confusing – a nice added touch for a medication that already makes you a little flighty)!  The injection is apparently better absorbed, and does not have as some of the more typical side effects, like nausea.  Generally people can tell if the MTX is working with in 6 to 8 weeks, so here we go!

I have had check-ups with both my Rheumatologist and my Dermatologist this week.  Not only did I switch to the injection MTX, but my pain killers were increased, and so was my Trazadone prescription.  I had been taking a ton of Ibuprofen to supplement the Tramadol for pain – but since my organs are so suseptable to damage right now, I asked my Rheumatologist which would be better for my body, Ibuprofen and Tramadol or simply more Tramadol.  She said more of the pain killer so we’ll see how that works! 

More on my appointment notes in a sec!

How do I feel right now?  Okay.  It’s hard to explain.  I “feel” like I have more energy on the inside, like I’m more alive; however my body is still in pain and I can’t actually do any more than before.  This is tricky for me because I feel revved up and ready to do something around the house; but then 20 minutes [of doing some simple task] later, I am completely and utterly exhausted and in pain.  Ridiculous. 

I think that the cold weather is making my pain a lot worse.  My hips and thighs are in constant and annoying pain, whether I’m sitting, standing, laying down, whatever.  I use heat pads which help a little, and try to lightly stretch when I can. 

Sometimes I sleep, sometimes I don’t.  I have been taking Trazadone for 6 weeks, and some nights I sleep like a baby, others I wake up several times in the night as before.  There is a definite difference in how I feel the next day having gotten a good night sleep or not.  This is a common symptom of Fibromyalgia.  On the days that I have slept well everything seems better.  We will see if increasing this drug will help me get sleep more consistently. 

I realized that I didn’t report what the results of my last MRI were in my last update.  The results indicated that there wasn’t any improvement, which is what we had expected.  One of my counts went down slightly though, my LD – which is a muscle enzyme marker.  So perhaps the Azathioprine was doing something, but was just making me too sick to continue.  Here’s hoping that the MTX will get the job done!

Since I will hit the full dosage this Sunday, and my body seems to be tolerating the drug, I will take the MTX for 3 months and then have my next MRI.  I am already anxious for those results!

Aside from learning how to give myself the injection, my appointment with Dr. Grandits (my Rheumatologist) was pretty cut and dry.  We did discuss my FMLA options (Family Medical Leave Act). 

HR approached me at work to let me know that they support me, and want to help me get through this. Dr. Grandits and I came up with an “ideal situation” for me to continue working.  Our plan is to have me work from home 5 days a week until I am better. To take [up to] 20 minute breaks throughout the day if I need to lay down, and take a break at 4:00 each day that may use up the remainder of the day (since 4:00 seems to be the magic number of when I hit a wall each day).  Our plan would also include parking near the door when I do go into the office for important meetings and such. 

I submitted this info and the letter from Dr. Grandits today; hopefully HR will have made a decision on whether or not they will approve this for me by the end of this week.  I have missed a few days of work in the past couple of weeks due to pain and being ill from my treatments (a funny friend of mine called them “Sick Sundays).  I have learned a lot about those days though.  When I am home and honestly just sit and try not to move around too much, my pain level is much less than the days when I try to keep up with what was once my normal workday. 

I am praying that I get this approval to work from home.  I asked Dr. Grandits what the other Myositis patients were doing.  To my surprise, she told me that the patients that did have jobs had all left them after getting sick.  Hearing this made me angry at myself for pushing myself for so long.  I can’t dwell on past decisions though, I’m facing them now.  Secretly, I wasn’t surprised to hear that; I know what this disease feels like.  I am more surprised that I’ve made it this far.

My counselor told me about a very wise yogi saying the other day, “If you listen to your body whisper, you will never have to hear it scream.”  This quote changed everything for me.  My body has been screaming at me.  I can’t keep pushing myself to be a person that I’m not right now.  I need to finally accept that I am sick, and that I cannot do many of the things that I used to do.  If I take care of myself, and be gentle with my body; not only will it feel better, but perhaps I can give it the chance to heal.  If I can just let my body rest, then I will be ready to enjoy my life again when I am better. 

It’s fun to daydream about all of the things that I’m going to do when I’m better.  I’m finally going to learn how to golf! 

Brad got the flu this past weekend while he was up at the cabin.  I was so scared of him coming home and getting me sick that he stayed at his parents on Sunday night.  I’m becoming mildly paranoid about germs.  

Oh!  My Dermatologist appointment; it went great!  For the first time in years I don’t have to go back for a year!  My Gottron’s Papules are much much better, and my skin looks great.  I thanked my doctor extensively for helping me through this diagnosis, and for discovering the signs in the first place.  If not for her, I might not even know what is happening to me right now – how scary would that be.  Thank you, thank you, Dr. Schaffer!

In the spring, I’ll have to get some new summer gear - SPF clothes.  Since I’m like a bajillion times more likely to develop skin cancer now.  I did find a product that you wash with your clothes like detergent and it adds an SPF of 30 to your clothing, which lasts up to 20 washes!  Regular clothing only has an SPF of about 5.  It’s called SunGuard (click on the word to check it out).  Pretty neat. 

Hmmm… other than all of that, I think that’s it!  My apologies for the novel; I am going to get better about posting little bits more often to avoid lengthy updates like this one.  

I have been really touched by all the friends that have mentioned that they have been checking my blog for updates.  It really means the world to me to know that I am so loved.  Thank you.

For those who are in Minnesota, stay warm!  XO, M

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