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A day in my life with Erythroderma

Sep 11 2008

I thought it might be good to tell exactly what it is like to have Erythroderma.  Like I always say, I am an optimistic person.  I expect to get well.  This is not intended as a diary of "poor pitiful me," but I want to present the facts as they are.  So maybe it doesn't sound so optimistic, but it is realistic.  I don't want to gloss over the truth here, but will tell it as it really is.

You've heard of the 7-year-itch?  I've got it.  For 7 years I have suffered with this painful and itchy skin.  The 7 years before that, I was troubled with it off and on, gradually increasing in intensity with time.

This autoimmune disease can be fatal if unchecked.  There have been days I knew I would die if they didn't do something to help me.  It causes my skin to be red and burned over 90% of my body.  On a good day, my skin is a medium pink and I can function, in spite of fatigue and muscle pains.  On bad days My skin is full-blown red, with chills and fever.  On those days I am in bed, very ill.  I've even had to be hospitalized to receive intraveinous steroids. 

Following is my typical day.

When I wake, I take 2,000 mg of Cellcept, an anti-rejection drug that is supposed to help my body quit fighting itself.  I don't think it is helping too much.  Before that, I was on Methotrexate, a chemotherapy drug.  (I had to quit it because it affected my liver.)   After taking the Cellcept pills, I must wait 45 minutes to 1 hour before eating, to give the drug time to do it's job.

During that waiting hour, I shower.  First, I lather my hair, then wash my body while the medicated shampoo remains on my scalp for 5 minutes.  On a bad day, even the shower sprinkles hitting my skin is painful.  Wherever there are skin folds, such as underarms, groin, etc.  is extremely painful because the skin is broken, leaving raw lesions.  But it must be cleansed, so I shed a few tears and do what must be done.   (I have those lesions, even on my so called "good" days.)  Then I pat my skin with a towel to partially dry it. 

Next, I apply medication to the lesions, and either a lubricating ointment or a steroid to the rest of the skin.  Getting dressed is a chore, because my clothing sticks to the ointments.  It is yukky to feel so gummy.  But it soaks in and becomes more comfortable as the day goes by.

I dress in loose knit pants and t-shirts.  100% cotton doesn't seem to irritate my skin, although seams sometimes rub, causing sore spots.  Bras and underpants are not an option.   I am too tender to tolerate the elastic. 

It takes about an hour to get ready for the day.  Finally, I can have breakfast!  Along with breakfast, I take Magnesium and potassium tablets to offset the dehydration of my red skin.  Without those tablets, I have severe leg, arm, and body muscle cramps.

On my "good" days (and nowadays I have more of them than the really bad ones) I do whatever I please until my strength gives out.  then I rest.

I like to walk on the woods path right by my home in the morning.  It is usually cool and shady.

My skin is sensitive to the sun, so when I go out, I apply make-up to cover my red face.  I must wear sun protective clothing, pants, long sleeve shirt, sun gloves, wide-brim hat, and sunglasses.  My skin won't tolerate sun screen.  On a really bright day, I also carry a sun protective umbrella.  Needless to say, this outfit gets really hot.  Heat also causes my skin to flare, so when temperatures are above 80, I don't go out much.

I read that two hours shopping under fluorescent lighting is equal to one hour in the sun.  They said hallogen lights also give off UV rays and can cause skin damage.  So to shop, I cover up in my sun-protective clothes.

If I stay home, I work on the computer (researching this disease).  My computer has a UV protective screen attached, because I am afraid of UV rays from the computer screen. 

If I have the energy, I try to walk again after dinner.  I truly believe nutrition and exercise is my only hope of getting well, so I do both faithfully.

At night, I apply all the medications, ointments, and/or steroids again, put on my t-shirt nightgown, and go to bed.  But that is not the end of my 24 hours.  The rough part is just beginning! 

I sleep a couple of hours, then awake with horrendous itching.  It is way beyond the poison ivy, chigger, or tick bite itch.  The itch goes deep into my body, causing me to feel crawly all over.  I can't describe the intensity.  I guess it would be like having a severe sunburn, then having a hundred tick bites all over your body.  I need to scratch, and it hurts to do so.

I apply cooling lotions and pace the floor until it settles enough for me to sit down.  Then I play Solitaire and Freecell on my PDA to divert my mind from the misery until I feel sleepy.  This might be as soon as 2 hours or it might be daylight before I can settle down to sleep again.  Many nights, I take a pill so I can get a good night's sleep.  Usually it works, but not always.

Then it begins all over again.  In the past, this has been very depressing, however, I've learned to live with it.  I accept that this is my life now, but I don't accept that it will always be.  I'm constantly researching and learning.  I have to help myself, because the medications don't seem to make me well.

I've had 6 doctors for this condition.  Early on, I was told it might be caused by an allergy, but that it is too complicated to find out.  It could also be caused by an undiagnosed cancer somewhere in my body, or I could have T-cell Lymphoma or Lupus.  It takes years for a clear diagnosis on either of these diseases.  Meanwhile, the doctors treated the symptoms.   That frustrated me!  They couldn't do allergy testing because my skin was already so red, it would be impossible to read the results. 

My current dermatologist is very knowledgable and has helped me more than anyone else.  However, it is a difficult disease and he tells me it could take a long time.

It has been particularly hard to deal with - not knowing what my future holds.  In the past year, I've settled into living in the moment, enjoying all that is good in my life, and not worrying over the future.  I take it as it comes. 

OK.  No more complaining.  I will find an answer.  I refuse to live like this the rest of my life.  I WILL GET WELL.  I'll be reporting it on this forum - what I find, what works, and what doesn't.   I sincerely hope my story will help someone else who is suffering with this disease. 



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