YI YI YI. The previous 4 months to the present have been trying and rather awful; hoping to see this 'bout of 'stuff' start improving.
Think the last post I wrote was about having hand-foot-mouth disease. Well, it wasn't. And it's been a journey.
I got real sick within a few weeks of that post. Ran a fever for 26 days in a row. And dense, blister-type things covered the bottom of both feet, palms of my hands, tips of 4 fingers on both hands, and in the palms of both hands. Around these, my skin was peeling off by the layers. Did you know we have 7 layers of skin? I didn't.
Saw my Internist who had no idea what it was. BTW, this toward the begining of the Ebola crises, and she was the only Doc I saw about this that was smart enough to ask me if I had traveled in that region, or out of the country. I love her. She's top-notch.
But she had no idea what I had and ran 26 blood tests. Of significance was the my liver enzymes were tripled. On a repeat test the following week, they had quadrupled. Don't drink at all and all my meds were ruled-out as a cause.
I had a regularly scheduled appointment with my Neurologist toward the begining of all of this. He, too, had no idea, what I had. However, what concerned him the most was the my temp was 100.2. I don't consider that a fever or much of one, but he sent me directly to the emergency room because of it. He said ANY fever in a person with PSP is dangerous because it can trigger/worsen many of PSP's symptoms and/or cause major regression. This info both surprised & frankly scared me quite a bit. I hadn't heard him be that foreboding in a quite a while.
Here's one part most can relate too. My Sister had driven that day and took me to the E.R. Nurse up to the top guy had no idea what was growing on my feet/hands, but most frustratingly had NO IDEA WHAT PSP IS or the significance of the fever with PSP, which is why my Neuro sent me there to begin with. MADDENING! Sat in that stupid room for over 3 hours and nothing got done. Cranked up my volume and paged the nurse to get the Doc in there 4 times. NO SHOW. Insisted to the nurse the DOC call my Neuro about why he sent me there at least twice. When the Doc finally showed up he just mollified me and sent me home. Nor would he give me a direct answer if he talked to my Neuro.
A person in my position, or any who has a chronic, serious illness, much less a rare one just shouldn't have to thru this nonsense. A positive that came out of it was my Sister hadn't yet attended any doctor appointments with me since I was diagnosed the summer of 2012. While sitting in the ER room waiting for nothing to happen, she kept repeating "Unbelievable!", and started peppering questions at whoever walked in the room after the first few hours. She got a quick education in all things PSP as well as experience the FRUSTRATION we with PSP and/or caregivers of persons with PSP run up against too often.
It annoys me to the max when I can clearly describe what PSP is in a few sentences - got it down to an art and a science - and have the medical provider stare at me like a doe-in-the-headlights and either say they no nothing about it and/or get egotistical because I know something they don't and am trying to be a good advocate for myself. Just really ticks me off!
Both of my Docs told me I obviously needed to see a Dermatologist about what was growing on my fingers, hands, and feet. I just groaned. It is common knowledge here in frost MN, USA, where our 'summer' is just 2-3 months long, it's a 2 to 3 month wait to see a Dermatologist. Why? Because too many people up here don't use sun screen using the short summer as an excuse, resulting in lots of people with skin cancer. My ex-husband's was treated for it 2 years ago; it was serious. A beloved cousin of mine just had a tumor removed from the side of his face, but the didn't get it all. Both were told it was from not using sun screen. It really is a big problem up here.
Tho I had a referral from Internist, damn, it was one big fight to get seen sooner than the usual waiting time. I had to get loud, then louder to get secure an appointment 2 weeks out. Then they called me 4 times to change it! Crazy-making stuff, I'll tell you.
During this time, I could barely walk, if at all, because the bottom of my feet were so sore, as well as my hand/fingers, ran a fever, etc.
I finally got to see a Dermatologist mid-October (I first noticed this stuff mid August, but it was just beginning and I didn't start feeling 'sick' till after Labor Day. I was diagnosed with 2 kinds of psoriasis, the tips of my fingers being one type, the palms of my hands and bottom of my feet another. Didn't really know much about psoriasis til that day, especially since neither of my Doc's recognized it as that, nor the E.R, but we can write them off anyway....
The kinds I have, especially the feet/hands is uncommon. It is an auto-immune disorder which means it will probably reoccur. This Doc was quick to point out it is first considered genetic, then autoimmune, because you have to have a specific gene to begin with. My Dad had psoriasis when he was in his 20's, but it was on his scalp. I have early memories of it because he was 20 when I was born, and I remember him blowing up like a balloon because he was on steroids for 10 years. He died 8-2-10, after being diagnosed with cancer on 6-30-10 with stage 4+ stomach cancer. We spent much time together. The last week I was up north with him he spoke of his battle with psoriasis as a young person and how much it embarrassed him due to the appearance of the disease itself, and an incredible weight gain.
The Dermatologist stated the psoriasis starts almost always when an individual is around 19 or 20 because it's such a pivotal time of life, the immune system is suppressed, and it triggers. She said it was surprising it triggered in me at the age of 56 but wasn't unheard of. She said she wished she had a med student with her because mine was a text-book case of it.
The proper way to treat it is with oral steroids but she didn't want to do that because of elevated liver enzymes. Both my Neuro and Internist believed the lesions, the fever, and elevated enzymes were all related. The Derm just shrugged her shoulders when I brought that up. So she sent me off with prescriptions for 2 lotions; one a topical steroid, the other vitamin D.
Every day since then I have to put a thin coat of both on all affected areas. At night, I have to wear cotton gloves on my hands and wrap my feet in saran wrap. Yup. Saran wrap. Simply yuk!
The Derm also strongly suggested I see a Rheumatologist not only for the psoriasis, but I'm at a much higher risk of developing psoriatic arthritis which is a whopping can of new worms, not to mention dragging a 4th Doctor into my mix. Uh uh. Not now anyway.
The last lesion I had was about a month ago, but the skin-peeling has been going on since mid September. And it's painful as heck. I lost 3 layers of skin on both of my heels and arch of one foot. My fingers have peeled backed, grew new skin, just to peel back again. Just saw my Internist last week; she was considering sending me to a Burn Unit for debridement but I talked her out of it. And, I've been cutting dead skin away for 3 months now. My liver enzymes are "almost normal" again, and my sed rate (amount of inflammation) is "really high" but to be expected, she said. Also agreed I didn't to see a Rheumotolgist -yet.
I Very much want this psoriasis episode to be DONE. 4 months since I 1st noticed it. Because my liver is in better shape, she prescribed a course of Prednisone starting at 50 mg a day.
I got it filled and have been eye-balling the bottle lovingly on my nightstand. But. my daughter Katy, has the flu; the real deal. She's been careful to avoid me, but if I take the Prednisone, it will knock out my immune system for about 2 months. And I have had a low grade fever all week. Do I dare start taking it?
The flu is rampant up here now, but I don't go out much, I didn't get a flu shot because of my liver being sick; doing my Xmas shopping on-line and finishing today. I do have an appointment with my Neuro next week. He scared me with the fever/PSP info. Hope I don't have one that day. I really can't get sick with flu. Katy's been running a temp of 102 degrees but it coming down by the day. And, I really can't end up in the hospital either with a diabetic dog who needs 2 shots of insulin a day, etc.
What do you think? Should I chance it and start the Prednisone or wait...???? Til/for what? The flu around for some time. I'm this side of desperate to stop shedding skin and let these wounds heal and be done with this stuff. To anybody out there who has Psorasis , I empathize with you. It can be a big deal.
And how has all of this affected my PSP?? Uh, not good, for sure. I'm not up a lot because my feet burn which doubles my imbalance. Even sitting, my balance has been off. But mostly my memory. Yi Yi Yi. The stuff that's been coming out of my mouth. Or not.
I need this to be over. Prednisone now or wait? I'm afraid if I ask either of my Docs, they may say wait. At the same time, this outbreak has taken 4 months of time I have left that I can't afford to lose.
Sorry this is so long. Making up for lost time. Have any idea how long this took to write?D
With just my good fingers.....? Ha!
Best wishes to everybody out there. I've been so under-the-weather, just couldn't get this done.
Love,
Judy
MN
USA
Inevitable but still devastating....
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