Update 3.28.11 - Mayo Appointment

Today was my appointment at the Mayo Clinic.  I don’t really know how to even start.  It was not what I had hoped for in terms of answers, but I will get them.  

My first appointment was at 7:30; I met with two doctors to discuss how my symptoms began and what my current treatment plan has been.  I had an exam where I got poked everywhere that it hurts, and had to exert my strength in all the ways that I cannot.  That was a little discouraging.  

We then began to discuss the disease and all the things that I have already been told a million times, “There’s no definitive treatment,” “It’s trial and error,” “We have to experiment;” also discouraging.  The doctors explained to us that Dermatomyositis is attacking my muscle tissue, which causes weakness, fatigue; but it is Fibromyalgia that is causing the intense pain.  Lupus is no longer on the table.  Thank God.

The main doctor explained his theory of DM, that you begin with the auto-immune process which creates inflammation which creates the symptoms.  His method is to then work backwards, since in the end, there isn’t anything that you can do to change your auto-immune system which is why the disease is for life.  

My doctor likes to begin with Methotrexate, then Azathioprine, then Cellcept (Mycophenolate) and a list of many more drug options to try down the line if I found that each didn’t work for me.  I have already tried Azathioprine; interestingly enough, he wondered if I gave it a fair enough try.  I am currently taking Methotrexate, he didn’t seem to want to move me off of that just yet.  Before I could ask him about his thoughts on taking a partnering drug he had already suggested starting on a steroid to alleviate symptoms.  He recommended Prednisone; although none of this is final until we get all of my lab results back for analysis.  

Prednisone scares the crap out of me.  This is odd, because I am already taking a drug so toxic that if I got pregnant while taking it, my child would probably have three eyes and a tail.  When I asked him what the risks where and he said, “You name it,” in a chipper voice.  “What?!” I snapped back.  “Just name a part of your body,” this was hard for me to understand; is this conversation really happening?  He then rattled off some of the more common side effects, osteoporosis, high blood pressure, increased bruising and risk of infection, weight gain, water retention.  

I asked, “If I’m already taking a drug that lessens my body to heal, and this drug could increase infection, am I doomed if I get hurt?”  He said “No,” but I didn’t feel any better.  Honestly, I think that some of the more superficial risks scare me the most.  First off, I have always been very proud of my [almost flatlining] blood pressure.  I’ve already dealt with pain, I’ve had surgery, I been violently ill from the medication...but now I could gain a bunch of weight so that I feel bad about myself?  That’s awful!  Feeling good about me has been one of my biggest strengths throughout this challenging journey.  Now I might wake up in the morning looking like I ate 6 bags of potato chips and drank 2 bottles of wine in the night before?  Son of a B!!!  I can handle most anything that you throw my way, but don’t mess with my self confidence and comfort level.  I can’t even go grocery shopping for food; how am I going to go and get all new clothes?! 

Prednisone is a very effective, quick drug.  The thought would be to take it to get my symptoms under control, and begin weaning off as quickly as possible.  What I don’t understand is how I would be okay without taking it once I start.  Does it round up the symptoms so that your body can focus on stabilizing the immune-system?  Ugh, I have SO many questions...

The doctor then told me what I didn’t want to hear.  We would not get a game plan today; we wouldn’t get all (or any, really) of our questions answered.  We need to get all the labs back and analyzed before they can make their recommendations.  This broke my heart enough that my eyes welled up with tears.  I completely understand why this needs to happen, and I fully support them in gathering as much information about me as possible before making a decision.  I just wanted to leave with my next step.  I wanted to leave with a prescription for something to help my pain.  

We return next week for a program on Fibromyalgia and for our results/game plan.  A week is nothing in the grand scheme of things, but it feels like forever when you’re sick, so desperate to get your life back.  

In all reality, I know that treating this disease is all about “experimentation.”  He mentioned that many people get frustrated feeling like “Guinea Pigs.”  I said, I know - I have felt like one.  He also clarified that the Mayo Clinic likes for people to have regular, primary care doctors and that they can be “Consultants.”  I should use my regular doctor for prescriptions, etc.  I said that I don’t intend on returning to my former Rheumatologist, and that conversation went nowhere.

I can only hope that when we return next week that he will be ready to help me.  That we can have a game plan, and that I will have my chance to ask my 3 pages of questions, Calibri 10 pt.  

So, here come the tests. 

Today’s tests:

10:00 Blood Tests - to check my levels and a few more tests that I hadn’t had before.

...I thought that I was a goner... I hadn’t eaten anything since seven the night before and they drew about 20 vials.  I made it though, and then proceeded to pound one of my Orgain shakes and all my pain medication in the waiting area.

11:00 Chest X-Ray

Dermatomyositis attacks the muscle tissue, which can also affect the lungs.  I have been losing my breath easily; so this is to determine if I have lung involvement or if it is simply a result of the sedentary lifestyle that I have been instructed to live for the past 10 months.

11:40 Electrocardiography (EKG)

DM can also have heart involvement.  I have been having the symptom of a sporadic and heavy heartbeat.  This test was to check my resting heartbeat to determine if my heart my be at risk as well.

1:00 Pulmonary Function Tests

As I mentioned, DM can have organ involvement, and a concern for me is my lungs.  This series of tests was sitting in a little glass booth, with my nose clipped like in a cartoon; to blow air out and inhale in various patterns.  This will determine if I have any lung weakness or damage....or if I’m perfectly fine!

Next week...

A 1 1/2 day Fibromyalgia Program will assess the severity of my Fibromyalgia, give me a game plan and also teach me about pain management, and life with the disease.  

We will also have our “Game Plan” meeting with the Rheumatology Doctors.  This is when we can really dig in, ask all of our questions and get a sense of what the next steps are and what to expect.

We’ll be staying in the same hotel, which was posh and cozy.  I truly felt comfortable and at ease  there; weird for a hotel.  Our room was beautiful, bed cozy, big plush bathrobes and all.  Brad and I ordered room service and watched a movie the night before.  As everyone has said, all of the people at the Mayo are fabulous, and at our hotel too!  I really enjoyed chatting with the nurses and listening to funny jokes from the doorman.  Little things like that help keep you upbeat when heading into something scary, or unknown.  

It did feel good though, to both Brad and I, to hear other people having our same conversations.  Overhearing other people discuss some of the same challenges, the same struggles trying to get answers.  It is not that I would wish this on anyone, but to not feel so alone is a magnificent feeling.  It’s easy to forget just how good it feels.  It’s also nice to not be the only one walking at a turtles pace, or getting help up out of a chair.

Oh, I almost forgot to mention that I agreed to participate in a Myositis research study.  Hopefully it will be enlightening and that I might even get to reap the benefits of the research in my lifetime.   At least it might help someone else someday.   My Mayo Rheumatologist is involved, and will be studying my data for my treatment as well. 

I will be calling my “new” Rheumatologist this week to let him know that I’m going to be coming in hot!  My appointment with him is in a few weeks and I want him to be up to speed on my most recent findings.  Hope he’s ready for me!  

So that’s it.  We had a safe trip, a lovely stay, and are glad to be home.  I’m not sad or upset; maybe just a smidgen...  I understand the need to know enough to determine the best course of action and I deeply respect that.  Just another week.  

A million thanks for my loving friends and family for keeping us in your prayers and for letting us know that you were thinking of us this today.  I know that I was a little surreptitious of the actual date, but I appreciate any well wishes just the same!  I will post as I learn of any test results, and of course, after our next appointments.

I am just so, so thankful for all of the love and support.  I just can’t thank you enough.  

Lots of love, 

Maren