Friday, September 12, 2008

I have an Invisible Illness: Dermatomyositis

I'm Blogging for Invisible Awareness Week

You may not want to read such a long and personal post, so you have my permission to skip this one.

But it's Invisible Illness week and I am posting this more for me (to remember just what it was like in those early days) and for anyone who stumbles across this post who also lives with an invisible illness....may it encourage to you to know there are others like you "out there" and who truly understand your walk.

This has been my fourth year of living with the diagnosis of two autoimmune diseases.  One is called dermatomyositis.  Derm relates to the skin, myo relates to the muscles, and the itis means inflammation.   The other disease is interstitial lung disease.  In both cases, my body's immune system has gone haywire in the sense that it won't shut off when it's supposed to and so it starts attacking various parts of the body that it shouldn't.  Prior to being diagnosed I thought an autoimmune disease was one where the immune system wasn't working when it should.

Anyway, I'm creating this entry as a reminder...for myself.  You see, God has brought me so far along the journey that I quite often forget just what it was like those first several months.  And it's also written to be an encouragement to anyone who stumbles up on it and is also living with an Invisible Illness of their own.   So if you'd rather just skip reading this entry, that's fine.  It's probably going to be a long one anyway!  LOL.

So where was the beginning?  I'm not really sure.  I remember in January or February of 2004, I would wake up so stiff.  Hobbling around a bit and opening and closing my hands would work the stiffness out of my hands, legs, and feet after a bit.  I started taking MSM with chondroitin.  It worked very well for a month or so, then the stiffness seemed much worse.  I noticed too that when I sat for any real length of time that I stiffened up then too.  I also noticed that the knuckles on my hands seemed red and I had faint red streaks from the bottom knuckles up to the middle knuckles on almost every finger.  I just lived with it at the point, not making any appointments to see the doctor, trying to hide it from the family.

That July, I scheduled to have my wisdom teeth removed.  My dentist and been telling me for years to have it done, that I didn't have room for them.  But I'd never had a problem with them, so why bother.  Then I got to thinking about the fact that I used to have a gap between my two front teeth and that gap was now gone.  Yea! It looked much nicer now!  But I wondered if the wisdom teeth made my teeth closer together and would they continue to do so, eventually making my teeth crooked?  I had the wisdom teeth removed.  I had an awful time with the nerve pain for a couple weeks! It hurt so bad.  My nerves were still sending signals to the missing teeth and nothing really helped except the numbing gel the doctor gave me. 

Prior to the wisdom teeth removal, my muscles were starting to become sore and by late summer they were extremely painful each morning.  I felt as if my leg muscles weren't quite long enough anymore and I needed to stretch them out before walking. Each morning, I would hobble out of bed and down the steps and into the bathroom.  It hurt so bad to walk.  Within a half hour or so, I'd be OK except the muscles were still sore.

On top of this, a week after the wisdom teeth removal, I started having eye problems.  My eyes began pulling outward!  I thought the problem was connected to the teeth removal and I went back to the eye doctor, thinking it must be the pain medicine and/or the nerve gel he gave me, but he had no clue.  I went to my optometrist and he referred me to a specialist.

At this point, I began wondering if the extremely painful muscles and the eye problems were related....after all, eyes have muscles.  I thought surely I must have some kind of autoimmune disease (AI).  My mom has two (Sjogren's and interstitial lung disease) and I knew there was a higher occurance in families with at least one person having an AI disease.  Researching the Internet did not help--first off, many of the AIs have very similar symptoms, and second, the Internet net is quite a scary place when researching anything medical.  Seems like you find mostly info on the horror stories of medical problems!

I finally made an appointment with my family doctor.  He agreed--it was very likely an autoimmune problem.  Bloodwork confirmed something was going on.  He referred me to Mom's rheumatologist, where I got more blood work done. 

I also went to the eye specialist.  After determining that I did NOT have a particular autoimmune disorder that involves the eyes, he said that this was a latent problem that affects many children....lazy eye.  That if anyone in my family had a lazy eye, then that was definitely the problem.   And when I asked if it could be connected to all the other muscle problems I was having, he gave an adamant "No."  He completely dismissed that there could be *any* connection!   He wanted to do eye surgery--to cut the stronger muscles of the eye thereby eliminating its pulling the eye outward.  I said I'd get back to him.  I left thinking....Yeah, right, you can't tell me that I suddenly develop an eye muscle problem and it's not related to all the other muscle problems I was having!  There was no way he was going to cut perfectly good muscles!  (I am especially happy that I did not have the surgery, because about a year after that, I was only still having problems with one eye and was now turning INward!!!)

By this time, every muscle in my body hurt pretty much constantly.  Other muscles became affected, including the esophagus, the intestines.  I tired very easily.  My energy was zapped quickly.

One day, Columbus Day, we went out to supper at Ponderosa.  When we left, I felt like I ate way too much.  I felt so full I couldn't catch my breath.  After that I often felt like I just wasn't getting enough air.   I mentioned it to the rheumy.  

Then one day, as I sat in a cold room waiting for the doctor to come in, I noticed my hands were a sort of purplish-blue and legs too!  I remembered reading about Raynaud's Phenomenon and asked the doctor to confirm it when he came in.  It's sometimes  called the "All American" disease because the hands are blue and white from poor circulation and then when the blood rushes back into the veins the hands turn red.  Red, white, and blue....hey, I'm patriotic.

Anyway, more tests and more blood work was done and it was narrowed down to one of two autoimmune diseases that affect muscles.  One more blood test to determine which.

At last I had an official diagnosis.......dermatomyositis.  Then came the kicker, the one I wasn't expecting....I also had interstitial lung disease.  The same lung disease that my Mom has.  I'd had no symptoms of it until the day I went out to supper that one day.

When Ritch and I went in to receive my diagnosis, I was determined I wasn't going to take medication for it.  I'd researched enough to know that most AIs are treated similarly and that I'd very likely be on the same drugs Mom was.  I knew how it affected her body, her eyes, her liver, etc.  I felt surely I could some more natural, herbal route.   That changed with one sentence from the doctor......."If you don't, you'll be dead in two years."  The lung disease was the culprit.

I had a 4 year old and a newly turned 7 year could I not take the prescriptions?   And so I started the traditional treatment of steroids and cancer medications.

As the saying goes, things get worse before they get better.  That certainly held true in this case.  Before things started to get better some 4 months later, things got a whole lot worse. 

I lost 40 lbs.   This was a good thing, since I was 40 lbs. overweight, but I wasn't even trying to lose, so it was quite scary.    The doctor suspected cancer, since with DM there is higher chance of developing some kind of cancer.   He'd never heard of anyone on high doses of prednisone not eating themselves out of house and home and gaining oodles of weight.  He never found cancer.  \o/ God!    Must have just been the stress and just my body's reaction to the meds.

I also lost a ton of hair.  Never to the point of needing a wig, but boy, I wondered.  I probably lost at least half.  I never understood when my hairdresser said I had a lot of hair!  To me it was thin.  Yes, I had fine hair, but there was a lot of it....most people really didn't notice that I'd lost so much hair, but I did.  It came out by the handfulls, daily.  I've since, with the help of Nioxin shampoo, regrown much of it. 

Also during that time, I often choked on foods or drinks due to the DM affecting the epiglottis and esophagus muscles.   I hated drinking anything at that time--I became anxious prior to taking a drink, which usually made it worse.

All my muscles continued to grow weaker.  I could barely lift my head of wet hair up out of the bathtub and I eventually had to give up baths altogether as I didn't have the strength to get out of it once I just kinda fell in.  I was exhausted by the time I got out of the shower.  Lifting my arms up to wash my hair and then to dry and comb it out was soooo tiring!  I had to rest in between.  Walking across the house wore me out.  Taking a gallon jug of milk out of the fridge, it took all I had to get it to the counter that was only about 3 feet away.  At bedtime, I would stand at the bottom of the steps and say "OK, Lord, you're going to have to get me up these things!"  I never knew 13 steps could be so much!  If I got up in the night to get to the restroom, I didn't have the strength to do the steps again and I'd spend the rest of the night in the chair or on the couch.  I got to the point where I didn't even turn over it bed unless I absolutely couldn't stand that position any took too much effort to turn over.  Anytime I'd worked my leg or arm muscles to the point of exhaustion, which happened quickly, they would tremor.

Schooling slowed to a crawl.  Most of my days were spent on the couch.  But I thanked God that I had found, long before this, a curriculum that could be done from a couch!  From almost the beginning of our homeschooling journey, I used an awesome literature-based curriculum called Five in a Row.  When I first read about it, I think I fell in love!  I knew--without even yet seeing it--that it was a perfect match.  It did what we had been doing all along--reading to our children and then discussing the story.  I went full tilt, hook, line, and sinker into it.......I used a Buy-it-now option on E-bay and purchased a package deal that included the first three manuals and many of the books used in the program.   Yes, FIAR can be done from the couch by a mom could barely do anything!  I had to struggle to get through the reading of the book (I'd become winded from reading) but it can be done!

Well, I think that's about it....what I remember from that first six months or so.   Now, I wear sunscreen a lot and, in the summer, a dreaded hat (I hate hats!) and try to listen to my body when it's tired.  I've been off the prednisone several months now and hope to be off the last nasty medicine within the coming year.  

I thank God \o/ that He was my strength during this time.  I am thankful too for the support of my entire family.  And my dear friends from my homeschool co-op were such a blessing, not only for their prayers but also for bringing us meals three times a week during the worst three months.  And I'd be remiss if I didn't thank my church for their prayers and encouraging cards.  (((hugs))) to each of you.... I thank my God every time I remember you. (Phil 1:3).  

"Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong." (2 Corinthians 12:10)

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ." (2 Corinthians 1:3-5)



  1. I'm sure it is not easy to reveal yourself like that, but you provide hope and inspiration to many. May God bless you on your journey forward.

  2. Thank you so much for posting your story. It really is nice to know that there are other people out there that have the same struggles. I suffer from Fibromyalgia myself, so I know how couches work lol! I just never thought about anyone else teaching from it. You are an inspiration! Thank you!


  3. Thanks for sharing. It's amazing, when I met you at the Cincinnati Homeschool Convention, I would have never known your struggle. Hugs to you!!


  4. Hi,

    I have dermatomyositis too and it sounds a great deal like your case. I have had a very hard time because my blood tests do not indicate muscle involvement. Yet (since 2005) I have been weaker (sometimes more than others) had attacks on various body systems that are seemingly unrelated, excepting that they are new to me: sharp pains in limbs, digestive, breathing, angina, neuropathic pain, eye issues, gout, loss of hair. And this stuff just comes and (fortunately!) after a few to several days, goes. At the beginning, I got every test in the book and was put on all kinds of medicine" methotrexate, prednisone, etc. The dermatomyositis sine myositis (w/o muscle) diagnosis was confirmed two different times. More meds were prescribed for the side effects from the pred and mtx and I was still sick anyway and not knowing if it was from side effects or the disease!

    So I stopped them and now am largely off, except I just finally gave in and started taking Lyrica for recurring neuropathic pain.

    Anyway, I am VERY HAPPY for both you and me, that we are persevering through this disease and doing what we came to do in this world in our busy lives.

    However, I would like to know if you could share your doctors names with me. I have had trouble finding doctors that acknowledge that the "migrating pain" issues that I have, of various body systems being attacked, are part of the disease. It is obvious to me that they are, and so I don't want to be treated like someone with so many temporary health problems! That makes no sense and gets me on too many meds and doctor appointments.

    Who have you found that not only reads and knows that this is a systemic disease but also acknowledges this when it manifests systemically in a patient!!! Rare diseases are tough! And subsets of rare diseases are even tougher.

    Thanks so much!

  5. I have just this week found out that I have dermatomyositis. I found your site through an internet search. I have just started to homeschool this year. We live in southwest VA on a farm. If you have any other information that you feel would be helpful, please get in touch with me.

  6. I live outside of Sacramento and have been looking for support on this disease. I have all those symtoms. Have been on medication 2 months. I had really think hair and now it is very thin and that is upsetting. I am only an 112 pound person and I have lost about 10 pounds... working hard to gain some back. I am a widow and my children live in Southern California. The loneliness is almost as hard as the disease. I was an extremely active hiker and horsewoman person and now I can hardly walk a mile. So hard not to be depressed. I want to do all the right things nutrionally, but everyone has a different answer. I had cancer 3 years ago abd I am worried (even though all my markers are good) that maybe it has come back somewhere else and they just can't find it yet. I have the Lord, but sometimes I am just so afraid and alone. I so would appreciate someone to talk to. Thank you! Marie Auslund Granite Bay, Calif. 916-390-0273


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