Checking in!

Hello friends, 

It has been a little too long since I have posted an update so here we go!

I am excited to report that I have been making big strides in getting back to my old self.  I am up to being out and about for 3-4 hours without flaring up.  With each small increase in time, I have had to learn a little bit the hard way, but it has been worth it.  I am also getting used to the modifications that I learned at Mayo to make the most of the time that I have both in and out of the house, and also to prevent flares.  

I have been in physical therapy for almost 3 weeks now.  I have had a little trouble with pain in my hips; but other than that, it's going great!  Still having a hard time standing for extended periods, but stairs are no longer a problem and I don't think twice about missing a close parking spot!  I can't tell you how good it feels just to be moving around.  I danced at a friend's wedding last night, and I even wore heels for the first time in probably 8 or 9 months; so great!  

I am pretty wiped out today; but like I mentioned, it's worth it!  There is really nothing like being out and "feeling" like everything is fine.  It's so great just to have fun and not worry about being sick.  I honestly am believing that I'm not, which may be my most powerful weapon.  I don't even want the work "sick" in my vocabulary anymore, I've moved on! 

I check in this coming week with my regular Dr. to see if she still wants to increase my dosage of Neurontin.  If she thinks that we can stop, than I'm closer to being able to possibly switch from Methotrexate to the much safer Plaquenil.  Even though I hate taking my shot each week, I am really anxious to stop the MTX since it has been making me get better.  I would imagine that I will continue to be watched closely whenever we do try to make a switch, but I do have my concerns. 

So, the real test to see whether I over did it or not at the wedding last night will be if I am still wiped out tomorrow, and even possibly the next day.  I have a good feeling though.  In the past when I have done too much, I felt really rotten then next day, whereas today I just feel tired.  Fingers crossed!

Looking forward to some sunny weather this coming week!  Safe travels to those cabin-bound for the 4th!  

As always, thank you for all the positivity and prayers; it means the world to me!  

XO, M

Starting Physical Therapy

Hello!

Just a quick note to let you know that I have been cleared for physical therapy by my Rheumatologist; first day is tomorrow!  I'll be working with the Sister Kenny Rehabilitation Institute.

Now that the MRI's show that my legs are better and that my arms are close behind; I'm ready to build back strength at a more aggressive rate.  Since the disease is in a "retreat" state, this is the perfect time to begin building back up the muscle tissue that was damaged and/or killed.  The disease does whatever the hell it wants, but having more strength will help me to face flares as they might present themselves in the future.

How I have been feeling and what the recent MRI confirmed: I have been able to walk quickly up the stairs without pain and without muscle fatigue.  My arms still get that "exhausted" feeling, but not nearly as bad as it was just a month ago.  It's truly amazing.  Today I held my girlfriends baby for about 5 minutes and didn't even bat an eye.

Although I still flare up, the days in between continue to increase and my attitude is right behind it, which is worth more than you know.  I'm pretty pumped for PT.  To me it's another big step in getting back to my old life.  

I'll keep you posted on how it goes tomorrow!

M

Best News Yet!

I am so happy to report my good news this morning!

MRI and lab results from the past two weeks are back.  After five months of the Methotrexate my thigh is nearly "normal" showing little inflammation and no muscular edema.  My upper arm is showing much improvement, still showing some inflammation, but muscular edema only in the triceps.

My LDH also came back looking more normal.  LDH measures blood sugars and also inflammation - when elevated it can signify that there is a severe muscle trauma and tissue damage.

I think that I'm in shock!  Maybe I'll even get to switch off of the MTX and onto a safer drug in the somewhat-near future!  We had discussed beginning physical therapy once the inflammation went down.  I am going to get back to myself!

Oh boy - my mind is all over the place!  I just can't believe that so much has changed for the better.  There were so many times that I felt like this would never be a reality; I am so full of gratitude.  I am so thankful and so relieved.

More soon!

Love to you all!
M