Thursday, August 22, 2013

Day 6 not blogged

I chose to go see the full moon last night. I love to see that moon rise up over the horizon of the ocean. It was so beautiful. It is one of my favorite things. 

Andrew, I picked him up & drove him home. He was having problems with an online class text, so I resolved that for him. Still got it. 

I also started and finished Dan Brown'a 3rd Robert Langdon novel, The Lost Symbol. I missed the release of that book in 2009. I read it b/c the library recently delivered Inferno, for which I was 400 & something in line. 

Anyways, it was a pleasant day. Eating-wise, I had some white pizza. Had leftovers. From Tony's on 210. Yum. 

Tuesday, August 20, 2013

Ending of day 5

I'm at (Miller's) Mandarin Ale House. Tues prime rib. 

I fell asleep just after 11pm last night. I woke up just before 8!! It was awesome. 

Last night I went to Yobe w/KT, Mel & Em. KT did not give me a time until I asked, and then it was late… I got there as they were about to check out. There was not really much conv. and they were ready to go quickly. Prob last visit out for me, since I'm getting sick. :( I was sad afterward. 

I spoke to Kathleen for about 3 hours last night. It was her midnight to 3am. She is such a gem. I also spoke to her husband Phillip. 

Se told me all about her life in Gemany. How it differs from "the States," in every thing from food to driving to TV and so many other topics. The call was broken up twice, once she had Skype issues, once when Andrew picked up by Shannon. 

Andrew: today he started school. He came yest b/c he had orientation, then Mark had to go to work. 

When I picked him up, we went to the Neighborhood Market to pick up drinks & snacks for his visits. He got red Gatorade, Mug Rootbeer & some kind of Klondike bars. Plus 16.9 bottles of H2O. 

He did homework, then watched most of an episode of river monsters on Netflix. He was picked up sometime after 6 by Shannon & Holden. Holden has swim lessons Tu & Th.

For dinner, I went to Ale house for prime rib (as above). I think I'm gonna start photo-blogging (phloging?) my meats. 

I ordered this with a Caesar salad instead of fries. Slight up-charge. W/tip (15%), $20.00. 

Here's the salad


And here's the prime rib:


I then went to Zaxby's for bday cake shake ($3.74). (No Pic avail).  

I got an email from Lisa saying that she sent her message for me to herself. Not sure what that means. She also said she is interested in getting her kids and Mak together. We'll see. I texted Mak and she said that she interested in that. 

So I'm gonna wait for Fallon/Ferguson & KLG & Hoda. Then bed. 

Tomorrow, some work on the house. 

Patti is in Destin for the next few days. Welcome to Fla. love you and love to all. 


Monday, August 19, 2013

PsE

Since psoriatic arth is PsA, I'm gonna use PsE for psoriatic erythroderma. What is it? Do you know me? Here is a pic from 2010


This is my right leg, Nov 23, 2010. The entire surface is one patch of Psoriasis. There is no piling of the skin cells, because when all skin is involved, there was nothing left for it to attach to. 

But what is PsE?? 

I never could find anything good as an online exanation in 2010. 

I was taken by Brooks & Lisa to Shands (at my req). Shands simply put me on IVs of saline. Nothing else was going on. After 5 days, I told them to discharge me. 

I went to my parents home. My cousin, John Cush, MD, treated me there. He is an arthritis specialist w/Baylor. As I have stated before, Lisa rescued me, Jackie (MD) saved me, and my Mother nursed me back from PsE. 

But what is it? Read this: 


What is Psoriatic Erytrhroderma?

Psoriatic erythroderma is an extreme complication of psoriasis. It is a major health emergency and requires immediate medical intervention in all circumstances. Psoriatic erythroderma is painful and can be quite horrifying. Psoriatic erythroderma is a dangerous condition that can occur when psoriasis has spread to nearly the entirety of the skin. Psoriatic erythroderma causes the skin to flake away rapidly, preventing the skin from functioning as a proper barrier against environmental influences and destroying a body’s ability to regulate its own temperature and removing any external protection against infection. Psoriatic erythroderma has the potential to be maiming or fatal if it is not treated properly.

Psoriatic erythroderma is far rarer than psoriasis. More than 60% of psoriasis cases only cover about 10% of the surface area of the skin. Psoriatic erythroderma frequently covers 90% or more of the skin, and it most frequently occurs in individuals already suffering from very widespread, severe psoriasis.

Who gets Psoriatic Erytrhroderma?
Psoriatic erythroderma only afflicts those who are already suffering from protracted, severe psoriasis. It is an advanced complication of psoriasis, and requires a severe, pre-existing case of psoriasis to become a possibility. This cannot be overstated: psoriatic erythroderma does not occur without a pre-existing case of psoriasis. No one that is not already suffering from psoriasis will immediately or quickly begin to suffer from psoriatic erythdroderma. While psoriatic erythroderma can be very swift-spreading and problematic, individuals not already suffering from severe psoriasis have nothing to fear and should not panic. Additionally, individuals who find that their psoriasis is spreading should not assume psoriatic erythroderma is the cause. It is a very rare complication that applies only to the rarest cases of psoriasis. Nevertheless, the same predisposing factors that apply to psoriasis apply to psoriatic erythroderma, as do the same ambiguities.

Men and women are equally likely to suffer from psoriatic erythroderma. Like psoriasis, it may occur at any age. Psoriatic erythdorerma is a complication of psoriasis. As psoriasis is an autoimmune condition, so is psoriatic erythroderma. Thus, individuals suffering from an autoimmune condition are more likely to suffer from psoriasis and, subsequently, psoriatic erythroderma.

Older individuals are not necessarily more likely to suffer from psoriatic erythroderma. However, they are more likely to suffer from extensive complications as a result of psoriatic erythroderma. The same applies to younger individuals, although psoriasis (and thus, psoriatic erythroderma) is more likely to develop in individuals approaching middle age.

What causes Psoriatic Erytrhroderma?
The cause of psoriatic erythroderma is not completely understood. It is deeply linked to psoriasis, as a complication; it is impossible to develop psoriatic erythroderma without a pre-existing case of psoriasis. Thus, it is necessarily an autoimmune condition. Psoriatic erythroderma occurs when psoriasis is left completely unchecked and spirals out of control. Under these circumstances, the skin loses any ability to heal itself, which allows it to spread even faster and more aggressively, quickly encompassing all of the skin.

Much like psoriasis, it is not completely clear what the origin of psoriatic erythroderma is. There is almost assuredly an autoimmune component, as indicated by the effectiveness of immunosupressants in locking down the spread of psoriasis plaques. However, psoriasis (and psoriatic erythroderma) are more common in individuals with HIV and other immunocompromising conditions, rendering this something of a paradox. In addition to whatever autoimmune component exists, there is likely a component of cell dysfunction, as well, likely related to how the cells rebuild and replicate themselves.

The distinct difference between the mechanics of psoriasis and psoriatic erythroderma, however, is related to the amount of skin affected and damaged by the progression of psoriatic erythroderma. In psoriasis, the skin is still left largely intact, with uncomfortable and unsightly plaques forming and flaking away. Psoriatic erythroderma occurs when these plaques have subsumed the majority of the skin and led to the skin’s widespread destruction, which in turn causes severe complications.

What does Psoriatic Erytrhroderma cause?
Psoriatic erythroderma is an extremely dangerous condition. The symptoms of psoriasis are primarily uncomfortable and painful, inflicting suffering and not much else. Psoriatic erythroderma carries with it significant health risks that require medical intervention; without proper medical intervention, psoriatic erythroderma may be fatal.

Psoriatic erythroderma occurs when the majority of the skin is overtaken by psoriasis plaques. This causes the skin to flake away, leaving areas skinless and exposed. This is naturally very painful, but it carries serious health implications.

This skin damage prevents the skin from behaving as skin. Psoriatic erythroderma destroys the skin’s ability to act as a barrier. Under normal circumstance, the body is protected against various infectious agents by its function as a barrier—a physical obstacle that keeps toxins and other unwanted substances from being introduced to the system. This is, in fact, the entire reason why scabs exist: blood coagulates and scabs form to keep foreign material on the outside of the system where it belongs. Psoriatic erythroderma violates this barrier function by stripping away too much of the skin for any scabs to form or defensive measures to be deployed. Paired with the potentiality of a compromised immune system (in patients suffering from late-stage HIV) or a suppressed immune system (in individuals who were previously controlling their psoriasis with immunosupressants), this can lead to very severe complications—sometimes fatal complications—due to the invasion of various infectious agents.

Psoriatic erythroderma’s damage to the skin also causes the body to lose the ability to regulate its own temperature. Ordinarily, skin is used to hold in large quantities of moisture. Water has a high specific heat and is resistant to rapid temperature changes. This is one component. Another component is the body’s ability to sweat. However, psoriasis plaques prevent sweating, and the flaking away of the skin destroys the skin’s ability to function as a moisture barrier, resulting in the body’s inability to stay warm and the body’s inability to cool itself. This can cause extreme harm to the body, which is not designed to withstand prolonged temperatures outside certain parameters.

If left untreated, psoriatic erythroderma can be fatal. The damage to the skin may be completely irreparable without medical intervention.

How serious is Psoriatic Erytrhroderma?
Psoriatic erythroderma is a very serious medical condition. It is, in fact, a medical emergency. Psoriatic erythroderma involves the override and shutdown of multiple critical systems. Individuals suffering from psoriatic erythroderma lose their ability to defend against most vectors of infection and lose their ability to regulate their own body temperature. This leaves them extremely vulnerable to infections from all sources and can cause them to dehydrate easily and leave them prone to hyperthermia.

Psoriatic erythroderma requires timely medical intervention to have a shadow of a hope of full recovery, and is frequently fatal without medical intervention. The list of complications is simply too long for it to be treated as anything but a full-blown medical emergency, owing to the painful gestalt of symptoms it leaves one saddled with.

What does Psoriatic Erytrhroderma treatment look like?
Treatment for psoriatic erythroderma is difficult and depends in large part on the degree of damage done already. Treatment is primarily symptomatic; psoriatic erythroderma indicates a case of psoriasis that has defied treatment previously, and attempting to treat the psoriasis to cut off the psoriatic erythroderma is effectively redundant if psoriatic erythroderma has come to the fore as a relevant issue.

Fluids may be replenished by means of oral ingestion or by means of intravenous feed, depending upon the severity of the dehydration that has occurred.

Infections may be fought off with strong antibiotics. This is frequently necessary due to the individuals extreme vulnerability to infection, although the antibiotics and their quantity required will vary from case to case.

Skin grafts may be necessary to repair the skin, which are an ordeal in and of themselves. Due to the nature of psoriasitic erythroderma, the skin is unable to heal itself and consequently must be grafted back together for the skin to again function as a barrier.

How do I know if I have Psoriatic Erytrhroderma?
Psoriatic erythroderma can be identified by its symptoms. Suffering from a sudden fever or hypothermia means that psoriatic erythroderma is already well underway and that emergency treatment is immediately necessary. Psoriatic erythroderma is characterized by its only appearing as a complication of cases of extreme psoriasis. If there is no case of extreme psoriasis in place, there is absolutely no risk of psoriatic erythroderma.

Psoriasis may spread somewhat. The spread of psoriasis does not indicate psoriatic erythroderma. An individual suffering from one of the more common cases of psoriasis that has very little of their skin covered in psoriasis plaques should not panic because another plaque has formed. However, an individual with an extreme case of psoriasis should already be in touch with a medical professional about their situation, lest their psoriasis get out of hand.

Psoriatic erythroderma should not be diagnosed and then treated after the fact; any individual suffering from psoriasis bad enough that it may bring about psoriatic erythroderma should already be monitored by a medical professional and treated accordingly.

Share and Enjoy


Maybe now you know why I'm scared. In 2010, I had Lisa. She provided comfort. Now-- just me. 

(That 'share and enjoy' was on the website. I left it [gallows humor]). 

Days don't really start or end…

Since blogging the end of day 3, I 1st walked, then rode a cart around Walmart. Until 5 min ago (2 hours). I came away with a $0.99 pkg of Snyder hot sauce flavored pretzel bits, and two things to help me with painting. 

I have cuts all over my right hand. The left foot hole is now two holes. 

I just pulled in here 

This is a kids placemat at Steak 'n Shake. I ordered a grilled cheese sandwich. The server told me he had to chk w/mgr. dude, it's 4am. All requests fly at this time of day. 

The balls of my feet are in constant pain. This has been going on since the end of June. The holes in my left sole are in the outer edge of that area. 

Well, I'm gonna wait for my grilled cheese. I ordered salt & vinegar on my fries. Because I'm a big boy. I'm the only customer. 

Sunday, August 18, 2013

Day 3 over.

I just went on FB. It is something that seems to wound me every time. On Sat, my 'friend' writes, "who can I go out with tonight?" I'm sitting here. Banished and abandoned by her. Also Ostracized by the friend I have given the most time to the last 19 years. Again, double whammy. 

I am so not wanting to have to endure the physical suffering to come. I just want it to end quicker this time. I vacillate in the opinion whether these 3 extra years are a gift or a curse. Yes, a gift to her. Until she grew out of me. Yes a gift to other family & friends. But to me? I have to re-do that June-December shit of 2010 all over again. That takes 6 mos. and then how long until death? How much more pain (physical) can I endure?

1992, when I couldn't walk, that was a state of bewilderment. 
1994, when I took my fiancĂ©'s Moyther's advice (that was being given to her, not me) and let her go. Called it off. 
1995, when I was 80% involved, that was very hard. 
1999, Phys so many things went wrong. The arth. The Psor. I had lumps in both sides of my chest.
2001-2002, things were improving. Went to ASU. Graduated. Somewhat stabilized. 
2003, returned to Jax. 
2005, catastrophic accident. But then Ann to comfort me for 2 years. 
2009, another bout with mental issues (3rd time I'm aware, 1998, 2005 & 2009). 
2010, wheels come off at intersection of mental & physical. Along comes Lisa, who comforts me for over 2 years. 
2012, Lisa has grown tired. But I'm still there providing a variety of services. 
2013, Lisa decides services value less than hanging on. Dismissed. 
Mid-2013, back to where (ment, phys intersection) I was late 2010. Only now, no comforter. I am all alone. Not just lonely. Alone. The life I had built completely collapsed. 

And now I have to wait for the physical pain. 

The bottom of my left foot. 


Day 2

Today had a tough ending. I got into a conversation with my mother about the finality of the situation and the fact that I've gone off Remicade (and all meds). I explained to her that thanks to Lisa, Jackie and Dr. Fleisher, the ending I should have had in 2010 has begun now.  Again I was given extra time for someone's benefit (this time Lisa did the rescuing & accrued the benefit). I should have begun this process by skipping April forward, but took the treatments in April and June. 

The extra 3 years were a gift. But the gift does come at a very high price-- My father's good name has been disgraced by my pleading guilty to a felony. Additionally, I have to endure that suffering again. Wow. It was almost unbearable. But it will take a long time to get there. 

Of course I'm scared. Last time I had Lisa. Even after I was hospitalized she came every day and climbed right in the hospital bed and lied (laid?) with me. Except the day she brought her son. I was ready to go. But after she rescued me, I went to my parent's house, for an ending. What I got was a remedy, provided by my cousin Jackie. He came every week, providing meds that my ins used to pay $$$ (thousands) per injection for. He provided that to me on an ongoing basis until I was gifted with remicade by Dr. Fleisher. I took that for almost 2 years. And for 5 1/2 of every 8 weeks, I was clear. The other 2 1/2 weeks, only spottiness. And that never stopped Lisa's tenderness. 

Friday, August 16, 2013

And so the countdown begins

A short while ago I realized that that day was the best day, physically, I would have for the rest of my life. 

Today is day one of the end. Today, my old nemesis, the master of my life for 20 + years, re-emerged. "My skin's on fire."

Yes. But this time no action will be taken to try and combat my true nature. I have gone off all meds. No more treating 'me.' Not my blood clots/veinous stasis. Not my bipolarity. Not my arthritis. Not my diabetes. Not my Crohn's. Not my Psoriasis. 

Any substances that I ingest will be discretional. So no more insulin. No more warfarin. No more prednisone. No more Depakote, Lithium, or Remeron. No more methotrexate. No more Remicade. 

Anything I do now will be for my own pleasure or to ease my suffering. I finally will fulfill my objectivist ideals. 

Notice Seroquel, Restoril, Klonopin are not listed amongst the drugs I will no longer take. Why? Because I have discovered that they have recreational value. And mine is a life of recreation. As it winds down. No money. But a load of those pills. Plus alcohol. Yes. 

Most food no longer gives me pleasure. I no longer enjoy wings. I no longer want to eat any chicken of any kind. The Outback Special no longer brings me pleasure. Pasta no longer brings me pleasure. Mexican, no. Most pizza, no. I tjink just because i no longer enjoy tomato sauce. Chinese buffets no longer bring me pleasure. Chips, Cheetos, Doritos no longer bring me pleasure. The list goes on and on. It is so crazy. Combos (Pizza)!! Sushi, no. :(   Publix subs! Firehouse subs! It is crazy. Crab legs on the Chinese buffet. But maybe just b/c of the oil they pass off as buttery substitute. 

So what is left? Well, the Chinese restaurant up the block makes a good roast duck noodle soup (not vegan). But I guess the vegan for health reasons can be abandoned now, too! I wish it was a moral choice. Although I don't agree with the approach of some vegans I saw on that journey, their passion and commitment is something I wish I had. 

But I digress. I will eat the vegan food in my freezer or perhaps give it away. I have fake chicken, fake burgers & steel cut oatmeal. 

I love pretzel buns. Wendy's is using that. I never cared for Wendy's burgers. I still love Bacon. I love blackened shrimp in a salad (pref. Caesar). I still really enjoy bananas, pears and apples. Avocados. Fish. Some French fries. The prime rib at th Ale House. The fish & chips at the ale house. The 35 shrimp scampi at the ale house. The after 10pm calamari at the ale house (apps $5). 

Marscapone cheese (cannoli?). I still like Italian Sausage. I haven't tried hot dogs. 

Anyway, I was thinking of going on a fast. Really for economic reasons. The price of cremation goes up significantly above 250 lbs. I'm 281 

Anyway the take aways are that I'm changing my diet, going off meds, and going back to alcohol. Doing what I want. 

I'm all alone now. Nobody left to please. I am so thankful to Destiny G. Hawkins Alesch. Because my experiences with her led to other (unexpected) encounters that led to Lisa and what Lisa gave me for 2 years. A feeling of belonging. And I am so thankful to have had that. I wish I could have rode it out, but her husband's cheating with Dana Sims created an unexpected ending. I was surprised how it went down, but what's the difference? It had to end sometime. 

The ending with Dave Rondeau, however, was totally unexpected. Maybe I knew too many of his secrets. Either way, that to me is very sad. And sad because it goes beyond he & I. His girls. Rose,  Katie. Melanie. I'm sad & rambling. That's enough for day 1 of the end.