I'm Aggravated!

And it takes alot. I wrote a long journal entry the other night, looked at the clock and it was 2:00 am, thought, "well, I better post this and get to bed,"; I hit Preview twice (??) and it erased the whole danged thing! And trust me, it was pretty interesting. Wish I could have printed it. Would have been my first post on this site. I'm not really sure what the journal aspect of this site is about--is it a daily how-ya-doin', or a record of our ups and downs; flares and remissions? If the latter is the case, LG for me. Spring always treats me well, and I'm assuming it has to do with being outside in the garden, planning a new crop, exercising (my wheelbarrow is grumpy), and just putting my face to the sun. The exercise plus my Enbrel really gets me past the PA, but note to sun-sensitive folks--if I use Dovonex on sun exposed areas, it gives me hives! You may chuckle, 'cause I do. Of all things . . .
After sixteen years of ups and downs of dealing with with this disease, I've learned many, many ways of coping, both psychologically, and physically. I am so thankful that we now have a variety of options to treat our symptoms, and that it's now not considered just a "disorder." And it was. When I was 35 years old with 70% plaque body coverage, all my Doc could tell me was that coal tar preparations had been known to help. And at that time, it was all I could afford. Thankfully, my Doctor is a love, and he's kept on top of all things new, all this time, just for me.
Until next time . . . Sheri

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Howzit ChefCheri?

Welcome!

I sympathise with the delete thing...
You should have 'saved' and gone to bed!
Quick answer to your questions.
1.Journal. Haven't seen too many folks posting a daily update on their condition.
2. Most people find a subject that they have a problem with or are interested in and post onto discussions.
Tip here: It is quite amazing how many of us fail to search for the very same thing that we are about to post!
Hope that you find the discussions both here and on the 'Complimentary and Alternative' section useful.
I have compiled my own personal blog which covers lots of stuff which may be of use should you wish to visit...
Meanwhile,

Go well,

Zee22 www.psoriasisbesymptomfree.blogspot.com

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Dear Aggravated,

I am so sorry that you lost your journal, I would have liked to read it. Hope that you are doing well and enjoying some sunshine.

Grumpy

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Well, Hello There, Grumpy Pants! Thought you forgot me.

We need to get together and just bitch our heads off about what the meds are costing now. Lucky one, me, I have insurance and low co-pays. But HELLO, Hello, hello, Is there anybody in there . . . a distant ship, smoke on the horizon (Pink Floyd, of course). This is what I'm thinking after I read a post the other night about the cost of Dovonex. REALLY?!! Back when I had to dole out the cash it was somewhere around $150.00, not $690.00 for 120 g. Just nod if you can hear me . . . is there anyone at home?(not you, everybody else) Talconex is up to $884.00 and change for a 100 g. tube. I am seriously thinking that it must have a whole lot to do with the recent advertising. What do you think?

Write Back, Doll,

Sheri

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the best remains under $16:

http://www.inspire.com/JULIAinFLA/journal/glycerin-mixed-w-witch-hazel-ant- inflammatory/

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Hi Sheri,

I would love to get together and bitch and we might even get to the cost of medication. I got 5 new prescriptions from a new dermatologist. All the ointments did was make my shin raw (a perfect beginning to a lousy week) and the oral medication gave me the worst intestinal problems. But at least now the doctors office will not return my calls, o well another dermatologist down the crapper.

I am trying to get back on Remicade I am hoping that will help me fell better for both the P and the PsA. I think that they charge so much is because they can. We are trapped and they know it, I cannot stop using the ointments, whenever I try my life long friend comes out to play scratch and itch.

Please write back I enjoy your notes…. Grumpy

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GRUMPY!!!

My computer was down for a bit, so I just now got this . . . FIVE?? 'SCRIPS??? Dude, you have got to be kidding me. What the hell kind of oral med do they have you on? When I read that, honey, I wanted to throw up (or worse) right along with you.

This is too funny -- as I'm writing this, there's an Enbrel commercial on -- you know, the one with Phil The PsA Golfer. Sorry, got sidetracked, but wouldn't it just figure?

Do you like the new Derm? Trust him? Get references? How the hell come he's got you on five 'scripts? My inquiring mind would like to know what kind of a semi-lucid Doc would try to poison you in your sleep. I'm trying to be kidding, but almost all this crap has some kind of toxic side effect. I can't imagine combining more than two.

Okay, enough trashing your Doc. He might be a good one; who knows. Maybe he even graduated.

On to the bitching. It is in my way of thinking (as my Grams would say, she's Irish) that the reason our drug prices have soared is that, damn, it's a disease now, not just a silly little disorder, or some such doggone rash. And, the whole reason I'm even on this website is the Psoriasis Speaks promo. Wonder what they're paying Phil for those commercial spots?

Done bitching about cost for now. But I have serious concerns about the un- or under-insured right now. I had absolutely no idea. I'm afraid to ask my pharamasist what Enbel is costing nowadays. I don't think I want to know. UHUMM, I need to clear my throat over that one. I hate to cry.

Back to you:

What ointment? I've done Dovonex for longer than I'd like to admit, and it's not done me wrong so far. In a pinch, I've subbed Vaseline Total Moisture. Tell me the new Derm doesn't have you on Betameth? That shit has a rebound effect like hell wouldn't have it. Sorry, Grump, did I just say that out loud?

Get back, and explain to me all about your new forms of torture. Hubby (Gary) says Hi, with a St. Louis Budwieser "Thank you Man." He appeciates it when I've got someone else to bitch with.

love,love,love,

Sheri

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i just found a derm that was able to clear my skin up in 6 weeks. with 3 cream and the right dose of MTX. the last doc i saw took 2 years, never cleared up my skin burnt me, probobly contributed to caturacts. gave my mom skin cancer left her in agony for 3 years. he just noted all the new cancer in the records and did not remove. she has since had 2 major surgeries to remove most of the cancer and the extreme pain. when you feel better after major surgery than before you know it was bad. The new dermatologist is going thru the old doc records and removeing the small areas. one leg/arm ect at a time. she was so bad on her chest that they had to remove a large protion of her breast. her skin was severly damaged from uv lights. the plastic surgeon who is working on the large areas of cancer has told her that her condition is from damage from the uv lights. she still has 2 major surgeries on her face this fall to get thru to remove the large areas of cancer.

I tried contacting the government in my state but they are against malpractise law suits. my mother doesn't think it is worth the stress to sue him. she is 76 has had P for 50 years. She hates P so much she would rather have cancer! says alot that she would not have done anything different. it is the less dangerous squemish type.

i have a diff form than my mother. i got it from my fathers side. but im so happy to finally have the skin stop falling off my hands and feet. bloody hand and foot prints are the worst. i dont get the plaque much my skin just falls off my palms and bottoms of my feet in sheets. when it first broke out i honestly thought it was a burn, since it didnt look like what i saw on my mother for so long and never saw my grandfathers.
P seems to need more than one type of treatment. nothing works 100% finding the right combo of creams, soaks. lights, or drugs is along and hard road. for me finding a good dermotologist was the key. im 100% clear for 2 months now and my mother is finally getting the help she needs.
my suggestion is if your not getting results get another opinion.

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Sherri,

Glad to hear back form you, I just took a (2) pain pill so if something does not make sense you will understand. I went to my local doctor, I told him the whole long story, he said to stop all of the 5 scripts and to use Bag Balm to allow the skin to heal. The skin was raw and really painful so I am doing better now but I am not going back to that dermatologist. I am using Hytone and the bag balm for now, I use Dovonex for all of the other spots, but it did not work on the inverse P.

I am getting to the point that I do not trust doctors, I must expect to much, a doctor who cares, knows what the hell they are doing, does not have the God complex and understands P.

I am kind of sick of the Phil commercials, he was able to waltz into the Mayo Clinic with appointments with the head of the Arthritis department and now Embrel is paying him. It just pisses me off…

My mom is Irish and thinks I just need to add Irish Cream to my oatmeal and if that does not improve things at least I won’t care as much. I talk to you later tell Gary “Hay”.

Grumpy

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