Feeling pretty bummed out...

When I was first diagnosed, the doctors told me about all of the Dermatomyositis (DM)/Fibromyalgia (FMS) /Lupus (SLE) symptoms.  I could check nearly every one off except for three: unexplained weight loss, various skin rashes, and swelling of the eyelids.  


I was jokingly a little pissed that I had all these crappy symptoms, but none of the weight loss.  I still don't have any type of a rash, but over the past three days I have had swollen eyelids.  


I spent some time yesterday doing home remedies: splashing with ice cold water, cold compresses and tea bags.  I anxiously waited for the morning to come today to see if they were gone.  Maybe I had just had too much salt or caffeine?  Nope.  It's Sunday afternoon and they're still there.  I am so disappointed.


I'll call Dr. Grandits first thing tomorrow morning, but I am pretty sure what will happen next.  I'll have to go in for blood work, then I'll get put on steroids.  It was my goal throughout my treatment to not ever have to take steroids.  They have a long list of  unpleasant side effects that I don't want anything to do with.  On the other hand, they can help control pain.


The eyelid thing is also a huge SLE/FMS factor.  That makes me afraid that those symptoms could be flaring up.  That would put a damper on the good streak that I have been on.  I had a good weekend.  I felt pretty good Friday and Saturday, which usually are pretty tough days for me - see "Update" from 1/27 for an extremely scientific and informative graph.


Enter "Emotional Roller Coaster Maren." This is the part that i think I dislike the most.  I'm totally fine, upbeat and positive until something breaks it.  I'm so damn fragile right now, I hate it.  I've moved up a notch to "Daily Crier."  At least my close friends and family are used to it by now.  In a 5 minute phone conversation if I burst into tears at some point, no one bats an eye.  That helps, really.  I think that it's the stress just needing to get out.


Hopefully by tomorrow, or even by mid-week I will have better news to report.  Of course, I always know how many things that I have to be thankful for.  I feel guilty when I get so down when I have so much to be grateful for.  This is something that my counselor has been helping me with; allowing myself to appreciate how I feel, and not compare it to anyone else's struggle.  It's really hard for me.  No matter how sick I am, there are little kids who are worse and it kills me.  Apparently this is really unhealthy, so I'm working on it... don't worry.


So, writing this actually helped a little (oh no - I'm becoming a blogger).  Hopefully it wasn't a huge downer to read.  I guess I just want anyone out there who is going through the same thing to not feel like they're the only one.  The only reason I can think of for why there are readers out their in Belgium, Croatia, Canada and other countries is that they might have been looking for someone to relate to.  It's something that has been really comforting, for me.


Well, off to the couch with my pups!  Here's to a fantastic week; and more to learn about life with these diseases.  


XO, M

Hallelujah - I finally figured out how to offer a "subscribe" option!

I have finally figured out how to offer a subscription option (Dad!).  Simply go to the box at right titled "Subscribe Via Email," and enter your email address.  You will then be notified when there is a new post.  I truly appreciate all the concern about this; even though it was secretly driving me nuts (Dad).  


All joking aside, I know that is it because I have so many people that care about me and how I am doing (that's you, Dad ♥), and want to make sure that they are keeping up to date with my progress.  So for all of that, I thank you from the bottom of my heart.  
Love, Maren

Could this be a pattern?

Today I am starting to feel like shit again.  Yesterday and the day before I felt fantastic (in comparison to how I have been feeling for the past 5 months, but obviously still below par).  Could this be a pattern showing that the Methotrexate (MTX) is...WORKING?! 

Allow me to demonstrate the pattern that I have been subtly noticing over the past few weeks:

I can’t help but feel excited; like I’m 16 and about to take my driver’s test.  I might be able to drive forever, or I might fail and have to start over.  It makes me excited for Sundays! 


Sunday used to always be my favorite day of the week.  Sunday Funday!  Apparently some people caught on, but I take full credit for the invention.  Sunday used to be a day of relaxation, enjoying the weather, a bottomless cup of coffee, a few mimosas, and nowhere to be.  Although I plan to resume my Sunday Funday ASAP; for now I will be eagerly looking forward to sticking that needle in my leg! 

The light at the end of the tunnel seems closer into view, but when I think of it I get a paralyzing fear that I’m wrong.

Hopes and prayers that this is the one.  That this is really happening.  My highest hope for my visit to the Mayo Clinic, and with the doctor at Rheumatology Consultants PA, is that they tell me that I’m doing everything right.  That I already have 9 weeks under my belt. 

Here's hopin'!

M

P.S. The title of this blog is depressing...

...I must have chosen it on an off day.  Any suggestions for a better name?  


XO, M

Update 1.25.11

Oh my god….I got an appointment at the Mayo Clinic!  AHHHHHHHHHHHHGGGGGGGGGGGGG!!!!

I can’t even believe it; I am so excited!  AND it’s in March – which is a month earlier than the appointment that had I just made with one of the doctors that has been in MplsSt.Paul magazine, Dr. Dorman at Rheumatology Consultants PA. 

I guess calling my Rheumatologist and flipping out to the appointment desk worked.  No more Mrs. Nice Gal! 

Only took 6 months of pleading with my doctors for me to lose it.  It's true that if you don’t stick up for yourself, no one will.  I was given the advice from the very start to keep track of every record for myself and to make sure that all parties always have the necessary information.  That was great advice.  Also great advice, "Stick up for yourself, and get what you need," from my Dad.

Just a few things to note from this past weekend.  My injection was about 100x better this week than it was last week.  I had very quickly improved on my technique, and I didn’t experience any nausea.  I did feel a little weird for the rest of the day (which is normal), but that has since passed.  A friend advised me to leave the needle in for 5 seconds which then nearly eliminated the problem of having any of the drug come back out of the injection site.  Fantastic.

I also stopped in to Sassafras, a nutritional store in Downtown White Bear Lake.  My weight recently starting dropping quickly (10lbs in 3 weeks) so I wanted to get something to supplement my diet.  While 10 pounds lost is a much welcomed change, I know that it isn’t healthy to lose that fast and wanted to make sure I had a handle on it.  Although “unexpected weight loss” is the one symptom of the disease that I don’t seem to have; I haven’t had an appetite for about 4-5 months now, so it had to happen sooner than later.  I got some drinks called Orgain, which are like an organic, supped up version of Ensure. A doctor created them when he got cancer and was going through chemo.  He wanted to have a nutritional supplement that would help keep him healthy.  They are very yummy and I will be happy to have one every day.  So far so good; I didn’t lost any more weight over the weekend.

Another item that I picked up there was this 25 servings of fruits and vegetables powder called Green Energy that I could add to the smoothies that I am already having every day.  This was a bad choice.  One teaspoon in my smoothie was so awful that it sent me into a 5 minute gag-a-thon.  That one will be going back.  *shudder with a slight gag*

The other item that I picked up this past weekend was a Barnes & Noble Nook Color!  It’s fun!  I wanted something to keep me company on the couch, and for that it does a great job.

Oh!  I almost forgot!  I am now officially working from home.  It’s only been for a few days so far and already my body is thanking me.  I am a little lonely, but hopefully I can get enough energy saved up to maybe do a little more on the weekend with friends.  Of course my pups are fantastic (have them both in my lap right now), and Brad is the most wonderful husband in the world; but sometimes you just need to be around people. 

I found myself trying to engage in an overly-friendly and corny conversation with the [uninterested] sales man at Barnes & Noble.  When I had a moment to hear myself I quickly snapped out of it and said, “Okay, those are all the questions I have, where do I buy one” and walked away.  I figured out the rest of my questions at home.

Other than that, the past few days have been highly productive and relaxed.  It is truly nice to be able to be gentler to this bod of mine; hopefully it will pay off.

Tally Ho!

XO, M

Update 1.18.11

Hello, 

Did my first injection on Sunday about 9:45 am.  Previously I had gotten violently ill from the pill form of Methotrexate (MTX) however, I made it until about noon on Sunday until I started to feel sick to my stomach.  That lasted for about 2 hours and then I was fine!  Yay!!

The injection itself was easy.  Per a recommendation from a colleague, I iced the area for a couple of minutes prior to the shot.  I just set my little ice pack on my thigh while I was getting everything else ready, then just stuck it in - didn’t hurt one bit!  I actually didn’t feel a thing.  That is great news; and on top of not feeling so bad afterwards, I am already a huge fan of this!

When I pulled the needle out a tiny bit of the medication came out of my leg.  “Ahhg, stay in there!”  I am wondering if that’s normal/okay, and if anyone has any tips on how to keep everything in there?  

Brad was there for moral support.  I said, “Don’t you want to come over here with me?”  He said, “I’m right here if you need me,” as he switched the trash bag in the kitchen.  After I gave myself my shot, I asked him why he didn’t want to watch me do it and he said that he can get shots, and see other people get shots, but he didn’t know if he could watch me give myself a shot.  Haaha!  He’s so funny.  Well, either way, everything went just fine and that is something that we’re both very happy about!

I got my lab results back from last week.  Red blood cell count was low, and my white blood cell count was back up in the normal range.  My LD (a muscle enzyme marker) has been high, and didn’t deviate from that norm.  My C4 (an inflammatory marker) has been consistently low, but is now high - but has never been normal.  This information is of course, for anyone who understands this, because I sure as hell don’t.  Every dang time I think I have it all straight I quickly realize that I really have no idea what I’m talking about.  

More on that next post.  I’m calling to check out another doctor this week!

Other than all of the above, I have been approved to work from home!  Today was my first day; I'll be back in the office tomorrow.  We're doing a system upgrade at work that will greatly affect my position so I have to be in the office for related training through mid-March; any days that do not have training will be "Telework" days for me.  Thank goodness.  As I write this I feel pretty good!  Brad and I just had dinner, and my body doesn't hurt nearly as much as it does on days that I head into the office.  I am really excited to see how "listening to my body whisper" will affect me long term.  It sure feels great now!

XO, M

So far, so good!

Took my first MTX injection this morning; so far, so good. I feel a little sick to my stomach, but much better than I had been doing when taking the pills.
Hopefully I will make through the day with no awful side effects!
Keep you posted, more to share later!
M

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