Life lesson: Bullous Pemphogoid

Bullous Pemphigoid personal story
Two things I've always wanted to avoid- poor health in my old age and being dependent on medication.
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I ease to an upright position, swing my legs to the floor and force myself off the bed.  It is 6 AM. Carefully and painfully descending the stairs one at a time, I go to my adult son’s room and gently wakened him.  “It isn’t urgent,” I tell him, “but you need to take your shower (he requires a long hot shower in the AM to get his scoliosis afflicted back working), eat breakfast and take me to the ER. To my surprise, he doesn’t say a word, just gets up and heads for the bathroom. The shower is short, no breakfast, and he is out in the December snow clearing a path so I can safely get to the car. Twenty minutes later we are on our way.

 While I fill out the required ER paperwork, he tells the attendant about my red legs, and explains something must be seriously wrong for me to have voluntarily come to the hospital.  From his part of the house he could hear me up at night walking the floor, running water for long periods in my bathroom. At my request, he had purchased some laundry soap for people with sensitive skin, but I had said nothing and hid all the other signs.  All he really is sure of is my legs are red and now red splotches dot my arms.

The redness first appeared the previous April.  I’m thinking allergy, or reaction to a cat scratch. It will go away.  By July, the redness spread from ankle to knee and around the back of my leg and to my forearms.  Now I’m thinking plaque psoriasis. 

Just after Thanksgiving an ugly blister appeared on my left leg. Each day new blisters appeared on my hips, thighs, back, stomach and upper arms.   In my effort to confront this thing on my own, I apply hot compresses to reduce the blisters, and eliminate things from my diet.  I drink tons of water to cleanse my system, and stop taking my vitamins in case I have overdosed on them.  I change from polyester clothing to all cotton, add a third rinse to my wash thinking my new agitator-less machine is not doing the job. I change from hot to lukewarm showers, and apply eczema creams, cortisone creams, and finally medicated talcum.  I tell myself the blisters are the sum total of my symptoms. In all other ways I feel good – if you overlook the tiredness from lack of sleep, weight loss from not eating, and slowly developing weakness, it had to be something simple.

By Christmas, I have no answers for what is happening to me. I have not been to a doctor in years, so I call the doctor who had taken care of my mother in her last seven years.   The next opening he has is three weeks away. I know I cannot wait three weeks, but take the appointment anyway and ask to be kept in mind for a cancellation.  Another 5 days, and I need to do something – I cannot sleep, cannot stand the feel of clothes or bedding on my body, I have lost almost 30 pounds in three weeks. I am weak, scared, tired and need help.

It didn’t take long to know that this was something serious and the look on my son’s face said he indeed had no idea what I had been enduring, but it was the doctor who brought it home.

“We’re putting you on antibiotics immediately and admitting you to the hospital. We have to stop this before it gets to your blood stream or it can kill you. We’ve called your doctor.”  Each time he stopped to take a breath, I whispered, “I want to go home,” and think, I have changes to make in my will. 

Settled in my hospital room and hooked up to the necessary intravenous equipment so they could administer a corticosteriod, I have nothing to do but think about what the ER doctor said, “It could kill you.” By the time my internist arrives, I have made a list of things I must do before I die.

The doctor explains that I have a bullous disease, a somewhat rare immune system disorder that strikes older women. There are several versions and mine is probably bullous pemphigoid.  There is no known cause or cure.  The immediate need is to reduce the infection, get rid of the blisters, and eventually establish a level of maintenance designed to prevent the blisters from forming again.   It can take months to a year to figure this out and sometimes, but not often, it just goes away on its own.

I am not new to illness. But I deal with other people’s illness.  I’m the caregiver and as such it’s not my practice to have an immediate emotional crisis. I need my time and energy for research, finding steps toward a solution, and care giving.  When matters are resolved or reached a path of maintenance, I privately fall apart.  This is what I did when my son was born with a host of congenital problems, when my father was diagnosed with mesothelioma and my mother became afflicted with Alzheimers.  Now it serves me well, because while I am in shock at my diagnosis, I do not cry, withdraw or immediately become visibly depressed.  I want to cry that night in the hospital, but I didn’t give in to it. Instead, I made a list of things I want to do before I die.

In the morning they surprise me with the news that I am to be discharged after I have a chest x-ray.  The medication is doing its job, I have prescriptions to fill and the internist has arranged for me to see the dermatologist in two days. I’m thinking this is positive. I am not as sick as they say. I’ll be fine in no time.

I spend the two days in my bed.  It hurts to move; I am exhausted from the fight and the fright. I nap and on wakening immediately check to see if I have any more blisters. I am alert to every twitch and twinge in my body, convinced that I will be the victim of side effects from the medication. In the morning my thinking process is positive, but as the day wears on and I wear down, I become discouraged. One minute I am convinced I will never be well again and the next telling myself I’ve always been in control and I will be now. 

Two things I’ve always wanted to avoid – poor health in my old age and being dependent on medication. Now that my fears have been realized, I am even more determined that I am going to be in charge. Doctors act in the best interest of their patients, but I know my body. They rely on tests to make sure they haven’t missed anything. I believe that some of these tests are not needed and in rare cases can be harmful.  I understand the steroids, but the other meds. As soon as I get home I will research each medication as to content and intent.   The dermatologist emphasizes that this is a “managed disease.”  I find this too unsettling. Does that mean medication forever? Has there ever been a case where it wasn’t manageable? It’s important to get off the prednisone as soon as possible because of the serious side effects. Then what?

I return home from seeing the doctor and realize I am exhausted.  Wearing clothes irritates every part of me. The discomfort, the discussion with the doctor, the procedures, and the prognosis raise my level of anxiety.  I am frustrated, because I have things to do and I can’t get them done.  I don’t have the energy.  Normally, I am an active 75 year old.  I do part time office work out of my home outsourced to me by a company I once owned, do my own housework and have numerous hobbies. I am not accustomed to tending to myself first. My routine is to throw on anything from the closet, feed the cats and get on with my household chores, or my work.  Now, I have to take the time to apply cream, find clothes that won’t irritate, take my medication and I’m tired before I start my day.

I make a chart for the medication showing which pills to take and when with a place to mark off when I’ve done it.   As I prepare the sheet, I think I didn’t really need this, but was later very glad to have it.  It appears the longer you take pills, the more easily you can’t remember if you took them – like remembering if you shut off the coffee pot or unplugged the iron before you left home. 

During the period I was attempting to self-diagnose (or was I simply in denial), I searched the internet for conditions that formed blisters. There are so many legitimate online resources like Mayo Clinic and MedNet.  I came across support groups for patients and advocates for people with bullous pemphigoid and now I spend time reading and reading it.

By my second appointment with the dermatologist, I had been on the medication four weeks.  The old blisters were healing, although slowly, but thankfully, there was no evidence of new ones. Rather than telling me, she asked if I was ready to try reducing the dosage.  I felt good that she was involving me in the decision making.  I fear reducing the dosage, eager as I am to get off the medication, but agree we should try. If the blisters build again, I can always go back to the three pills a day.

The next day I see the internist.  He immediately points out a new blister on my hip. Otherwise, he finds nothing wrong with me that requires his attention, When I tell him I am having trouble sleeping he says it’s probably the meds. He knows I will refuse, but offers to give me a prescription for a sleeping aid. I turn it down.  By the time I get home there are three new blisters, plus two old ones that have increased in size.  For some reason, I wait three days to increase the pills.    

Over the next few days I prepare and fax an update of my will to my attorney and start a list of unfinished projects that I want to complete – all those things that I planned to do “someday.”  On that list are my father’s military memoirs which have been in the making for far too many years, bags and boxes of yarn sorted by project with patterns ready to follow. Will I stop working? No.  There has to be relaxation as well. I discovered mediation some 20 years ago. It’s been good for me, but I have neglected it the last year or so.  Put that on the list. I collect antiques, mostly things I can use, not just live with, but I think it’s time to thin out the things I don’t use.  I see no reason to leave my son with a lot of things to get rid of.  I need loose fitting clothes, but can’t go shopping, so I resort to the internet and purchase anything that will hang loose.  I call them my clothes made by Omar the Tent Maker.

But when it comes to actually getting all these things done, it takes forever. Fatigue is a big issue, and where my motto has always been “I can do anything I set my mind to,” I now find I am unsure of myself. Am I doing the right things; am I doing things right?  I am discouraged and angry.  I recognize that I am short tempered with anything that or anyone who interferes with what I am doing or stops my train of thought. This is causing some tension between my son, the people who outsource to me, and my cats. 

Finally, just before I have everyone totally upset with me, I put it into words for them and for me.  I explain how frustrating it is for me not to be able to get my projects completed and how sometimes it is difficult to concentrate. I tell them I am worried and that wears on my nerves and I am not use to being sick.   From that point on things go better. I try to restrain from lashing out and they understand if I do – all except the cats.

I have periods of dizziness enough to cause me to stagger. Finally, I get it.  Take rest periods before exhaustion sets, not after. I am not doing much, but still I am overdoing. I need to listen to my body. The doctor tells me my body is fighting hard to get well, and I need lots of rest. The people w ho outsource to me tell me, “Hey you’re sick, make the most of it. There’s no guilt in that.” My son is constantly asking what he can do to help and I keep telling him nothing.  He’s capable of doing a lot if I will only let him.  I can tell he wants to help. At one point he said, “This is a switch. I will be taking care of you.” I replied, “Pay backs a …” well you know. 

Next week I go off Prednisone. I’m hoping getting off the medicine will also help reduce the fatigue. I know, even if I never have another episode it is going to take months for me to get back to my old self.  A much younger person would no doubt recover much more quickly.  I never thought of myself as old. Now I feel old.   A inside joke in my family is that I am so old that I helped Moses carry the tablets down from the mountain.  Today I feel this is true, except I don’t have the energy to carry the tablets.

Being blister free is not the end.  No one knows what causes the onset of this disease or what will cause it to return.  It is a cloud over my head, but things happen for a reason.  I take this episode as a message to slow down and enjoy more.  My family, friends and co-workers have all encouraged me to stop, or at least slow up.  I didn’t know how. For the last 3 ½ months I have been forced to come almost to a complete stop.  I don’t want to be idle, but I will not go back to the same pace.  

The future is a time frame without definition, and none of us know what it holds. My future is here and now and how I deal with it is one more challenge in the series that has shaped my life.

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