I am so sad today, but nearing Peace

The final shreds of my so called life are unravelling. 

I've been over 4 Mos off the Facebook. I went on to vote for and post a link to Brooks Doritos Commercial Video. I was signed in for 3 days. It was odd to see the news feed. People were still carrying on in exactly the same manner they were over 120 days ago. 

Today, I was cut deeply by both a friend and a family member. 2 of the people that I still have regular contact. The contact is forced in nature and after being slighted, will be both awkward and strained. 

I'm almost completely closed off. Almost completely cut off. I'm sure the end is soon. I'm ready, mentally. Realizing there is nothing left, peace is settling in. Peace. 

Nov 23- Veg meal plan, Day 1

Today I started again on the veg kick. Not completely vegan, but mostly. I am going to attempt to outline meals, including prep, cost & satisfaction.

Meal 1

Chik'n Jambalaya with 32 oz Powerade

Meal Cost: $1.46 (Chik'n $0.58, Rice $0.25, Powerade $0.63)

Ingredients:

Bag of Gardein Chik'n Scallopini

Publix, $4.29; BOGO, PLUS $1 Coupons.

Package price, $1.15, 4 pieces

Box of Zatatain's Jambalaya Mix

Publix, 10/$10. 

Package price $1. 

Prep time 30 min

Preheat oven on broil, to 375°. 

2 1/2 cups of water in pot to boil. 

When water boiling, add rice box to water, return to boil, then on low for 25 min, stirring occasionally. 

I cooked 3 bags of Chik'n at once. This will allow me to have Chik'n ready for the next 5 meals. 

When temp at 375°, Chik'n in oven for 10 min, flip Chik'n, then cook 5 more min. 

Two pieces of Chik'n, 1/4 rice mix, 32 oz Powerade Zero. 

Cal 440, P 33, NCarb 35, F 9.6, DFib 5.25

It was delicious. The key to using these vegan protein substitutes is the flavor of the addins, in this case the rice, but also sauces. Some of the sauces will inflate the pricing of these meals, but justifiably so. 

Day 66. Giving up, giving in

This ride to the bottom is too hard. 

Dermatologist appt today. 

Schd Remicade is Dec 11. 

I'm hoping he can get them to take me this week, Maybe Wed, day 68?

Still hole in foot. Foot doc gave note indicating free of infection. 

Still have a wound vac attached. Still getting visited by nurse M-W-F. 

The pain is excruciating. The pain is unbearable. Yet is soldier on. 

Here is a shot of my back. 

Day 55-- for Lisa

The thing I could not teach you

I taught you all to well

As demonstrated in late February 

When you said, "Go to hell!"

I could not get you 

To part with clothes for babies

But you discarded my soul

In an awful hurry. 

I look back on that day

And the events which led

To us parting ways

Me almost left for dead. 

The source of the contention?

The seed of our discord?

Sprung from your resentment 

Of the forced discourse. 

Between me and him

You thought that it was right

But it was your only sin

And the source of every fight. 

What did you think we'd say?

Talk of Sports & politics?

Opposites in every way,

It was bound to turn to this. 

A man 3 times a cheat (at least)

Who holds you in contempt 

Of course would turn our speech

To the things he did resent 

The things I was there to help with

Quick became Our undoing

In conversation the sole topic

For a year almost- our ruining. 

I saw in you perfection

While he was pointing out flaws

Against better discretion 

For you I simply adored

I should have fought to stay with you

I simply did not know how

So I started figuring out what to do

Make plans for the there and now

I thought I'd wage the fight

From without, distraction free

My plan was short of sight

As you completely cut off from me. 

I thought that You I would see

Continue with assisting

That was not to be 

Contact with you non-existent

Now I'm back where you first saved me

In September 2010

Only now it's October 2013

And I'm without you, friend 

Same arc, same suffering

Not the same without your compassion

Now I'm wishing for an end rushing

But it's really just in the same fashion

Except without you, friend

Your kindness, and your touch

Making living through this new end

Something that frightens me (much)

Oct 15, 2007

It was about this time (2 am) I woke up, not that I was really sleeping. Danielle had pushed our dinner to very late Sun night. We shut the Olive Garden down. 

I awoke at this time every Monday morning that fall. I left home around 3 am, Tallahassee bound. I worked out of CPIC offices in Tallahassee from 6-12:30 before heading off to FSU. 

About 10:30, I received a call from a woman. "She's dead, Joey," she said in almost a half sob. "Danielle is dead." It was my sistet's mother-in-law. 

"What?" was all I could say in response. "I'm in Tallahassee, so it'll take me 3 hours to get back."

I called my professors, explaining the situation. In graduate school, you did not just 'skip' the once weekly class. 

I drove back. As I was pulling into the Jax area, I recd another call. "No need to come here," Danielle's husband on the other end. They've taken her away. 

6 years. 

No mother for Makynzi. 

No daughter for my Mother and Father. 

No sister for me, Mary, Patricia and Rebecca. 

It is still a sad day.  

My existence

Yesterday I was reminded

I went into the hospital 11/2010. 

I was under the loving care of my friend. I was totally inflamed with P. Like never before. 

I spent my time going from the bed in her guest room to the tub (4 ft). 

I went to emergency room because I had not gone to the bathroom in a week. This is what I was reminded of. I totally forgot. My mother reminded me. 

Everyone was so generous then. Lisa tried to provide me physical comfort. Even when in the hospital, she came everyday, lying in the bed with me for about an hour, telling her stories. 

But the doctors there did nothing for me. They 'suggested' that I was losing moisture through the skin and did not have a need to urinate. But wastes were building up. The treatment they put me on was saline IV. 

At the end of 5 days, with no treatment for P being provided, I told the hospital staff I wanted to be discharged. 

I had a pending flight to Texas. I figured I should let what ever was going to happen in Texas where my parents were. 

But when I went to Texas, my cousin (rheumatologist Jack Cush, MD) provided me medical care including weekly shots of Humira. He got me in with a dermatologist who provided me 3 weeks of cyclosporine. Additionally, my cousin wrote prescriptions for methotrexate and prednisone. 

I should not have accepted the treatment. I didn't know. I am now in te same predicament in Oct2013 that I was in Sept2010. Only this time I'm working on my second September lower left leg infection in two years. 

Last year, I went to hospital with swollen ankle and had surgery. This year, I had a hole in the bottom of my foot. I went to the same podiatrist instead of going to the hospital. It's 7 weeks later, I've had 8 different prescriptions, 6 for 5 different pills, a liquid wound preparation, and a wound covering that has active ingredients included silver and algae. 

Now, I have been fitted with a wound vac. Called Negative Pressure Wound therapy, it is a pump the provides constant indirect suction on the wound. 

All of this is so crazy. I've sold nothing for Mark or Brooks. I've never hot back to painting. This foot problem actually began July 23. 

I don't know. I miss my life. 

The isolation is almost complete (Day 45)

I saw Gravity this weekend. In IMAX 3D.  It took in $56 million. It was visually unbelievable. 

I am disappearing or maybe disappeared from Danielle's daughter, Makynzi's life. 

I only bother her & her dad about every other week at this point. She still does not do anything with me since I left Lisa. 

This week's text and response to Mak (her dad, NO REPLY). 

After the mabe (sic), no further response. 

I put my Mom & sisters that I will not be trying to get Mak as I have every anniversary of DeeVee's death (Oct15). 

That's why I titled this "The isolation is complete." Lisa told me that I would be abandoned & alone. She wasn't wrong. Even my niece. For whom I was a foster parent for just over 7 months. Who I spent years taking places, esp. Disney World. But everywhere else. At 10 1/2, she has outgrown it. 

Isolated. Just waiting for this curse to be complete. 

I never thought when I agreed to leave that Lisa would completely abandon me. I never thought that Dave would turn on me. While I am greatful for Mark, Brooks, they have little outside time to spend with me, or me with them. Case in point: this year, I was not even called on to do something with Brooks family for Linda's bday. 

I am cometely alone. Kathryn called in me today to help her with algebra 2 homework. I did so virtually using text, email and FaceTume. Absolute Value equations and graphing. 

I get to see Tara's boy a few times a week. I miss you, Tara. 2 years. 

I don't see your girl, Danielle. I miss you, Danielle. 6 years. 

Soon, I will be a memory. Looks like not a very good one. Oh, well. I gave everything. I am reaching a point if peace as I've started to let go of people. I always cared much more about people than things. I am almost rid competely of both. 

Just in the 7th week since the beginning of the end. More resolved then when I started about this choice. Soon, I'll be free. 

October's here

How can a month fil one with raging fury and deathly fear? 

Here we are again, October. It was in Oct1992 I was first afflicted with PsA. 

It was in Oct2010 I first was completely covered (95+%) with erythrodermic Psoriasis. 

It was the last 2 Sept (2012, 2013) I got infection in my lower left leg/foot. This year (so far) I've stayed out of hospital. 

Financially, not much change 2010-2013. End of month, balances in accounts are mere cents. 

That's $0.36. 

One thing I have been very good about avoiding has been overdraft fees. 

It seems like I can hope for reg work with GoWaiter CoSpr and with Stephens Advertising. Combined possibly in excess of $200.00/week. That would allow me to start paying back for the transmission repairs. 

Agenda for month

Finish painting rooms, bathrooms, great room. Not likely to get kitchen. 

Reseat toilet in hallway bath. 

Get grass in back cut down with weed wacker. 

Do something about bushes on south side of house behind fence. 

Sunday eves- Drive Brooks 3:00-8:30

Mon middays- GoWaiter 12:30-6:30

Tues late afternoon- Andrew 3:15-6:15

Wed mid afternoon- Drive Andrew 3:15-3:45

Thurs middays- GoWaiter 12:30-6:30;

Andrew 3:15-6:15

Fri eves- Drive Brooks 3:00-8:30

Sat-- off

Expectations (??)

GoWaiter (atypical)

Stephens (atypical)

Costs

Ongoing costs of foot injury ??

Check and Go payday loan $555.00

Transmission $2,400 bal

Debt to parents $1,900 bal

Cremation costs (Neptune Society) $1.400

Curse you, October

October is coming 

The dreaded month 

For the second year in a row, I have a an infection in my lower left leg in the month September 

last year, it was in my ankle; this year it's in the sole of my foot

I have achieved complete isolation. 

I continue to contemplate my missteps. 

In the end, all my giving left me with nothing. 

So I take my final descent, knowing I gave everything. A peaceful passage is all I seek. 

So much physical pain. It is really strange how much more bearable this pain was in 2010. I had that false, dreadful condition-- Hope. But that hope certainly alleviated some of this pain. 

Dignity. It is something we as a species strive towards. 

I am without dignity as I await my fate. 

October. Most hated of months. I wish I didn't have to see you again. But here you are. Hopefully the last time I cross your page. I have battled you for 21 years now, Black Month. 

Your torture of me has gone on long enough. Oh, if I knew then what I know now. I used to love you, October. My favorite holiday became the accursed day. Oh, Halloween. No longer fit to enjoy you.

My favorite month now the most dreaded. Baseball glory. The playoffs + World Series. But you are overshadowed by this dreadful anniversary. If only I had been allowed to slip silently in 2010. 

Now, isolated, I suffer this indignity alone. The mess. The ripping. The blood. The pain. Nothing left. Except to wait. Alone. 

Day 38

Day 37 was a very good day. Certainly the best in the last 30. I started part time temporary work at a company called GoWaiter Colorado Springs in CoSpr, Co. 

My sister Patricia & her husband own the company. My sister Rebecca pretty much runs the company. From Allen, Texas. 

I actually got to work Monday & Wednesday. Wed was a split shift, some lunch and some dinner hours. Rebecca thinks she is going to limit me to helping out on Monday & Thursday lunch shifts. 

She gave me $150 for helping out. 

Tues, day 38. Foot doc visit. Pharmacy visit. Nightmare. More antibiotics. Pricing just at the edge of out of reach. Doc said next visit, grafts. That's not until 10/8. 

King Henry IV

Also late Sat nt/early Sun morn, I watched Shakespeare's Richard II. although historical fiction, after reading some history about it, a lot of it was true. 

More intruiging to me was the fact that King Henry IV died at 46 due to complications due to Psoriasis. Of course, psoriasis wasn't a named disease in the 14th century. Still, I'm hoping it finally is my ending. 

I've never felt so alone. Patti texts me that Mak was trying to get Patti to bring her down to New Port Richey this weekend. Fuck that. I'm so sad. 

It's JP's bday. I've heard nothing about his party. Sad. 

Begin of week 6.

It's been 5 weeks since the begin of the end. 

Weird weekend. 

Fri-Sat nights, tried to "act" like dying man and recite lines for Brooks latest short film, Be Squared Production's The Case of J. Valdemar, produced for Norman Studios (Jacksonville) competition featuring films based on the works of Edgar Allen Poe. Also Starring Brooks co-worker, Steve Ritchie (sp?). 

Sunday, I received FaceTime from Mary in the morning. She was on just over 2 hours. Her son injured his heel and is having surgery Mon Morn. His heel bone ruptured in 2. 

For over 20 min, Mary asked questions about my relationship with Lisa (Perry). She asked a number of times about the physical part of the relationship, saying this girl must have loved me to interact with me on that level given my damages. I told Mary I didn't think that was the case. I told her Lisa might have been fond of me, combined with the loneliness she had experienced due to her husband's ongoing infidelity with numerous partners over the years. She disagreed. Finally, I told her I had to go. 

Before & After driving Brooks, which was much longer, I helped Katie Rondeau with Algebra II. She had to correct a test on Absolute Value equations & inequalities. 

Then I went to Mandarin Ale House. I had Mahi Mahi Piccata and a salad. 

Finally, around 12:30, after the steelers lost game 3 of 3 this season, to da Bears, I went to Mandarin Walmart. One of a few still open 24 hours. 

A worker there tracked me down after seeing me earlier. He wanted to ask questions about Psoriasis. His name was John. He has it on his elbows, knees, sometimes the folds of his chest. I told him to go to a doc & ask for Clobetasol Ointment. 

That is the first time (almost 21 years) I have been approached by another Psoriasis sufferer. I had on a long sleeved shirt, but my legs & head (obviously) were exposed. Hmpf. I hope he gets med. it will probably clear him. 

Monday, Patti (really Rebecca) starts trying me out with GoWaiter. We'll see how that goes.  

Jags lost (game 3 of 3) in blow out to Seattle. Yanks lost game 3 to SF after winning 1st 2. 3 is their elimination #, with 3 teams ahead of them. They'd have to jump 2. Like 6 games left. Not likely. 

Get up as Josef Valdemar

I am in agony

b/c of my sadness over the plight of the Syrian people. 

This drought. 

Love those Allen Boys

Just went to wing it with Matthew & Andrew Allen. Got to listen to them talk about now & the future. 

The Syrian issue has really been on my mind. How does a group like Al Queda and Al Nuria take hold? It seems like when the people have no hope. 

Since 2009, Syria has been suffering a severe drought. The response of the world- apathy. It is really very sad. 

I hope that there is a bright America for these boys. 

A strange world

For two days, the national news channel has run coverage of nothing but the story of a shooting at the Navy Yards in Washington. A man, a contractor, entered the building and took up a position on the 4th floor and shoot down into a food court in the atrium. He killed 12 unarmed civil service workers. 

At the same time, a bicyclist set a speed record

Story is found @ http://bit.ly/18wVn0X 

At the same time, I watched, on Russian TV, online, the 19 hour 'righting' of a Carnival owned cruise ship called the Costa Concordia. In 2012, the ship was run aground in Italy during a pr stunt. 32 killed, 2 missing. It is estimated to have cost 800 million to right this ship. 

Original position 

Partially righted

Standing upright on a platform

This is what the Psoriasis my right arm looks like today

This is what the ulcer on the bottom of my left foot looks like

Messed up world- Navy Yard Shootings

A contractor killed 12 people today with a high powered rifle before being killed by authorities. Let here were other casualties. It is so sad. 

In uplifting (?) news, the Pope is calling people who write to him about their problems. 

Today was the 3rd visit by the ANNA nurse, Yuri. He says some black has appeared outside the wound that he is concerned about. I took a pic during the dressing change tonight. 

My mother says my sister was hospitalized today after falling in the bathroom during a chemo treatment. I have not been able to get her (Mary) on the phone or by text the last few weeks. Just like my sister Rebecca. Weird. 

I rescheduled my Remicade appt for 6 weeks (Oct 30). Reason: infection. 

Skin flaking (?) progressing much faster this year then in 2010. 

I am so alone. It is so perplexing because I have been alone and never this lonely. Weird. 

Day 28

I texted everyone left this week. Mary, Rebecca, Trista, Rose, Ann. I received a response from none of them. 

The isolation is now complete. All that is left is Mark (I live in one of his houses) and Brooks (I still drive him Fri & Sun). My Mom & Dad. Maybe Patti-and by association still Rebecca, if I help with GoWaiter. 

Even Brooks- it was his wife's bday on the 4th. Not a word to me, I'm sure this is the first time I'm in town & did not participate. Wow. 

I'm really surprised. Even Cari stopped playing that words game with me. 

It was predicted by the dark one. Maybe this is the magic she has- black magic. Either way, it is surprising & it sucks. 

Nearing end of 4th week. Day 26.

Brooks came over tonight. He brought some Little Caesar's Pizzas. 

He wants to shoot a short based in an Edgar Allen Poe story- the facts in the case of m. Valdemar. It is a two person story- a dying man and a mesmerist (precursor to hypnotist). He ha started decorating his set 

Crown molding

Chair railing

Old armoire 

Window with curtains

Crazy. Here's what my arm looks like today:

Was it all just made up

When she was busy rescuing me in 2010, she told me her magic would not only heal me, but would sustain me. 

My cousin then saved me. 

A generous medical professional then took compassion on me. 

I was clear for 18 mos. 15 mos of that time was with her. Then, no veh, no where to go, she told me to leave. I had been sucking her tit (off and on) for 30 mos. I spent about 9 of those 30 mos away from her with my family. 

Where was the magic? Her husband began carrying on an extended affair-- with a woman in her mid50s whom he knew in high school. But that woman was looking for husband #3. HE could not be husband #3. He told the woman he was afraid to leave his kids alone with his wife. Did he love his wife?, this woman asked. He said there was not even an ember smoldering that could be sparked. That love was long gone. 

She had no magic. Or if she did, she decided, despite my absolute devotion, that I was unworthy. Either way, no magic. Fat globes are not magic, no matter how spectacular they are, esp. for a 44 yr old. 

I am sad. I really thought she was going to save me after that spectacular rescue. She was not. 

I am reflecting in this manner because my parents having left, I am again alone.  No one to ask, how are you? No one to give a shit. 

PASI -- 16% today. Involvement on each limb, appendage, front and back of torso & even genitalia. No palmoplantar involvement. 

National suicide (prevention) day

Look. I am in pain. Too much pain. Physical, mental, emotional, spiritual. 

I need an ending. I'm going to suffer through to one (hopefully) when the Psoriasis completely takes over. 

There's a lot of suffering that is involved in that. 

Where is the dignity?

My cousin is staying in a facility that costs $5,500/month. He has no physical ailments. Only mental & drug damage (not abuse- taken as prescribed). I wish I could see my cousin before the end. I wish I could have visited disney before the end. August was really my last chance for either of those.  It didn't happen. 

Abandoned. That's what happened to me. I should have been allowed to go in 2010. Now I have to go through this suffering all over again. Shit. 

To foot doc 9/5

 I made foot doc appt. I said no meds/docs. That commenced in mid-late July. 

This injury occurred after that, while I worked collecting garbage. During the 1st six collection days, I had two right foot sneakers fall apart, but got this injury on left foot. 

Work an (uncompensated) 7th day with this injury. 

I have struggled with this foot injury for just over one month. 

I had to pay $185 to this doc office today just to see him tomorrow. 

End of day 17

Today was a half bad half worse kind of day. 

I only was able to mow 3/4 of Mark's Moon Harbor lawn. 

Andrew came over, did some homework and some fishing. Nothing caught. 

Went to Olive Garden for never ending with Dave Rondeau. 50+ days apart. He was congenial. He asked me about Lisa & a lake in NC. Told him I don't know. I hadn't thought of her for quite a while. 

Later, I emailed her info about what's going on in St John's County Elem. Schools about writing and Lang Arts (TIDE). 

Foot- really unable to walk at all. 

Bought some bacon. Tomorrow's gonna be a better day. 

19 years. You like Wings?

Well I recd a text today from David Adam inviting me to never ending. 

I haven't heard from him since July 10. He did text a dinner invite both days of the Savannah 48 Hour weekend, and also texted thanks the day I moved Rose cross county from WRES to WHES. 

Things are progressing on the skin front. I 

Made foot doc appt. owe him $182. Luckily SSA started paying again today. 

Unlucky they shifted lump sum to outstanding default. 

I can barely walk 

Oddities of my time, Diana Nyad

Today, a 64 yr old lady completed a 110 mile swim from Havana, Cuba to Key West. This was not her first attempt. She tried when she was 29 in 1978 and few times in the last 3 years. 

She is the first person known to have done it without a 'shark tank.' She tried to speak afterward- her tongue was swollen from jellyfish bites. 

One thing she said was never give up on your dreams. Of course, this should be prefaced by "if you have money or supporters with money," as the costs to undertake this feat must have been huge. 

The photos of her swimming show her surrounded by 3 canoes or kayaks. It took 53 hours. She had 5 support boats and a total crew of 35. Like I said, $$$. 

I went out today for a BLT. It was $11. That's crazy. It was loaded with bacon. Came with salad & B & W cookie plus drink. After 1/2 I was full. Brought 1/2 home plus all if salad and 1/2 of cookie. 

Here's what I look like today:

Here's what foot looks like today:

It's Labor Day. I haven't had a full time job in over 3 years. #lettinggo

Day 15 AM

Parents leave for Canaveral for 1 week cruise on the Carnival Dream. 

Kimberly arrived overnight. That means she and sis #2 still here.

Makynzi just called Patti. She has not called me at least as long as summer started. Wow. 

Kimberly & Patti left for New Port Richey at about 10:30. Bye-bye. 

Soon it won't matter. I'll be dead.

Current pic of foot. 
 

 

Hoping end of day 4 @ 10:42p

I'm so sad. Talked to Kathleen for hours today. Andrew visited. More on those tomorrow. Sleep is coming. 

End of second week

Not much blogging this week. 

Really nothing doing. 

Family here & I still had to be alone. 

I need a hasten to this ending. One week after missing treatment, can't really eat, skin becoming inflamed. 

Swelling in left foot/ankle no longer going down overnight while elevated. 

Food tonight: Chicago Beef @ Carmine's. ate 1/2, brought 1/2 home. 

I didn't take pic of mine. This is my Dad eating it Wed night. 

Kimberly now here. She's 21 now. 

I hope she had a happy Birthday. Kathleen, too. 

Please, Death, do not tarry. I do not want months of suffering. 

My Brain's on fire. My Skin's on fire. 

People closest to me think it is OK to treat me badly. I cannot accept things like that anymore. 

I had planned on focusing on things that make me sad this week. I didn't. Who gives a fuck? No one. Grow up. 

Mid day 14

My Skin's on fire. My Brain's on fire. Coincidence?  

Antagonism. I'm still inflamed inside, rising up from below my hut into my throat. 

Day 14. AM.

Had breakfast with Dad at Cracker Barrel. Came back, antagonized by sister #2, who is visiting with Parents. I asked my sister not to come. My parents stopped at her house in New Port Richey (NPR) before coming to Jacksonville.

It's funny, sister #2 would not come last weekend, to go to Jags/Eagles game because she"just got here (NPR)," but could come here 3 days later for 4 days?

Anyway, I only have days left to live. Why should I be bull shited by her? And now she has gotten my mother started. 

Please death come soon. Please. 

Sat. Day 9.

Heard from Lil Miss today via email. Nothing specific, just "what are you doing?" And "what have you been doing?".

Time stands still for no one. I got 3 extra years. And her compassion for almost 2/3 of that time. Pretty good by any measure. Except the reality: I have to go through this physical and emotional pain for a second time in 3 years. But this time with an ending. Alone. 

That's my right forearm. Progressing. 

Day 8. More disappointments.

So I finally got paid by that asshole from Brooks' job for the 7 days I pulled garbage with him. I was very concerned about the pay. I was told it would be $35-$40 per day. I worked 7 days. Pay should have been $245-280. I got $200. Not even $30/day. I got a hole in my foot. 

It made me wonder, could I actually commit violence on another person? In my youth, I did. But now? This person stole from me. What is the right move?

Anyway, this 2nd week, I want to focus on the things that make me sad. They mostly revolve around my loneliness and aloneness. I've already given the % of time I'm alone in a given week this summer, 95.8% of the week. 

The first sad thing is that I have to eat all my meals by myself. I used to say that this was my one last enjoyment left. But it is really not enjoyable. 

I tried to express this to someone online tonight while I was eating dinner all by myself. Their response? She said, there's not anything wrong with eating by yourself, doing things by yourself. Of course there isn't. But I had stated I eat every meal by myself. It is hard to impress upon someone how that really plays out. 

I am so sad to eat all my meals by myself. 

Day 7. 1 week down.

Today was the end of one week without meds. Another pretty good day. 

Andrew came & did homework til 4:20. We went to Wingit. He got through 12 wings and maybe another 3. No more going on thurs. 

I held out and went to ale house after 10. No prime rib left, so I had 35 blackened shrimp with $1.00 upgrade to Caesar salad side. Awesome. 

Went to Walmart and got a bowl for salad mixing. Got some DC for driving Brooks. 

Really a nothing day. P appearing in scalp, behind ears, on legs, buttocks, torsos & arms. All in very small amounts so far. Pic of arm

Just starting. Long painful road. 

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. 

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. 

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: 

From: http://skinchannel.com/psoriasis/psoriatic-erythroderm/

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. 

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 fiancé'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. 

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.