sundevilatthebeach

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I have not read a book in more than a year after a lifetime of reading. Last year was a dark one for me. This is the first book that I have read through after deciding to take up reading again. It was a fun, quick read

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General condition, Mood

On the skin front, things continue to improve. Due to Hurricane Irma, I missed a week of the Cosentyx loading dose (5 tx in 5 weeks) but that will be wrapped up next week and then it is supposed to be monthly.

I’m still taking MTX and Prednisone. 22.5mg and 10mg.

The left leg pain started subsiding following the second corticosteroid shot (one in doc Office at site of pain, one in hospital with X-ray into hip), about a week later. Now able to walk around without walker or cane. Strength: still weak from all muscle loss. Worked out biceps with 12 lbs dumbbells on Tues. Pain persisted through Fri am.

Mentally, still do not feel like I am in mania or depression. Now that the focus is not on the 100% of time Phys pain, I am situationally depressed, considering my lack of future opportunities and possibilities.

Still suffering with tremendous shoulder pain, that is preventing (at times) being able to sleep in bed. Sleep is still quite elusive, but I think I finally have a nightish sleep schedule. I spend 4 hours in bed at a time when not sleeping. Will do 4 hours in bed, then 4 hours in chair, then back to the bed until I fall asleep.

Eating has picked up significantly, even though I am never hungry. Even if I go eithout eating for more than 2 Days. The biggest issue, though, is dehydration. I am not drinking enough.

I didn’t go for blood work today because I feel the dehydration. And yet I refuse to drink. I used to drink between 1-2 galleons of water a day, following discharge from Brooks hospital in 2005-2014. Since early 2016 I have not been drinking water. At all.

I’ve been mostly alcohol free. During Hurricane Irma, I had 3 bottles of beer at a bar in a Mexican Restaurant. I simply gave alcohol up in 2014 b/c of Remicade and never went back.

I miss drinking b/c of the medicinal effects. But as a binge drinking alcoholic, it probably best I don’t return. I want to, though. Maybe I’d find regular sleep.

Mood: Foul. Dysphoria, but not dysphoric mania. Still unmedicated Re: Bipolar. And still no episodes.

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So much to do, still no strength

I don't even have the energy to type this. It's nuts. Every area of this house needs attention. Things have gotten so far out of hand while I've been sick.

My sister did come that one time when I was completely bedbound. She was in the house for under 3 hours. I was very appreciative of her efforts.

I have been up since yesterday. I took sleep meds. I even lied in bed, which is not something I've done recently. I've spent all my time in a recliner. My left hip/femur hurts. Still. I have no strength. It's a new month, no change. I'm improving in skin. My leg/hip has also benefited from two steroid shots, one in the Orthopaedist office, the other in the hospital under X-ray.

Too much idle time, yet unable to do anything. I had o now the front lawn this week when it hadn't been done for 5 weeks and after I was told it would get done Monday. I get back from drive to see Mom & Dad Tues eve, not done. It was a struggle. But I got it done. Yikes.

I'm so tired and cannot sleep. Usually when I do sleep, it is during the middle of the day. That's crazy.

I've felt like I've been eating a lot more in the last week. For 3 weeks, instead of Happy Meals, I've been getting (and eating) 2 Big Macs. Ice Cream, Chips, Cookies, so much junk. Even 20oz Pepsi Colas.

I'm cold almost all the time. Except when I'm not. Then I'm overheated. But that does not even occur every day.

The MTX, Prednisone and now Cosentyx are bringing me back from the Erythroderma. Not really looking forward to how it's all going to work out.

To live without hope is a strange place to be. And even though my situation is completely devoid of hope, I have an unfounded optimism. It's nuts.

I have to stop writing now. My fingers… the arthritis.

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The end of August

I haven’t posted since late June. One of those days I declared as thigh happiest day of my life. In a life spinning (physically) out of control, it surprises me that I felt that kind of Euphoria. Since then (began July 10) I started having problems walking. Not arthritis. Something wrong with left leg.

After two visits to Orthopaedist, with neg X-ray and MRI I was given a corticosteroid injection into the muscle at the source of the pain by the doctor. I was also sent to get a left hip arthogram with steroid injection at the hospital. That was done by a Radiology PA, on Aug 30.

On Aug 23 I had my 1st injection of Cosentyx. It is a biological antibody that works on IL-17A pathway to combat PsO (also used for AS). The first set of shots (it’s 2 at a time) were sent to doc office. They had that changed for this week.

But the UPS driver did not come to the house, instead dropping them at the UPS store. I waited all day, checking the tracking at the end of the delivery window given by UPS My Choice (2:15-6:15) and it said at UPS store. Luckily that didn’t close until 7, so I was able to get and take the second of 5 loading doses.

Before the first dose I had noticed some changes in my skin. For about 2 weeks before, the skin was shedding more than before (in Erythroderma). But about 3 days before the first Cosentyx dose, it had subsided greatly. There are even some areas that are no longer Erythrodermic. Weird, since I’ve been on the MTX the whole time. I guess I’ve been on the Prednisone for about 6 weeks at that point.

We’ll see what impact the Cosentyx has. In 2013 the Derm, Dr. Robins tried Stelara, which works on the IL-23 pathway. I had two doses and he put me back on the Humira, which Dr. John (Jackie) Cush was providing me for free at that time. About 6 weeks after that, Dr. Robins got me in with Dr. Fleisher at he Borland Groover clinic for Remicade. They were going to waive the co-pay (20% of $15,500). It didn’t work out that way. After he $2,024 I owe them from this January treatment, the balance is over $10K.

Both Humira and Remicade are TNFα inhibitors. Enbrel is same. For what ever reason, they worked with different levels of effectiveness for me, with Remicade doing great with clearing, Humira less so and Enbrel even worse than that.

That’s why it’ll be interesting to see what Cosentyx does. And the manufacturer, Novartis, is providing it for free (for now) under their compassionate care program. I’m under pre-approved state, have to get an application and proof of income plus medical coverage in.

oh, I'm hovering at 215 lbs rn. I might diet and try to go under 200 while waiting for this Erythroderma to subside. I'm supposed to go to rehab/PT for 6 weeks/2x a week. The co-pay is $40, so that's $480. We'll see. I want this doc to fix my shoulders, so I might be stuck. I might go to the Y or LA Fitness and start on the bike.

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Fried cheese patties (Irish Swiss). Gooey cheese inside… (at Mandarin (Jacksonville))

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Some chili and cornbread with tomato and cheese. (at Indialantic, Florida)

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at Mandarin (Jacksonville)

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at Disney's Magic Kingdom

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Today may be the Happiest day of my life. I got to send Patricia, Rebecca and these boys to Cinderella’s Royal Table (Magic Kingdom) and Akershus Royal Banquet (EPCOT), both of which are Princess Dinners, on consecutive days. Today, Rebecca and the boys get to breakfast at Chef Mickey’s. Me? I’m too ill to dine in any restaurants. But I am so happy. My only wish is that Mary and Danielle could have been included… (at Chef Mickey’s)

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Vs Lunch, yellow tomatoes and added pepperoni (at Mandarin (Jacksonville))

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at Mandarin (Jacksonville)

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Even at 235 that belly is poppin. Attempt at dressing normally while contains mess. #erythrodermalife (at Summer Pines Theaters)

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Texas style (beanless). Tri-tip so tender it melts in your mouth. Ground beef and a bit of heat! (at Summer Pines Theaters)

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EBT is doing his best to play along… this is PJTs Lollipop. #thomboys #roadtrip (at New Orleans, Louisiana)

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Kid starts enjoying Disney Magic early with a "little" treat from the Magic Kingdom. #roadtrip (at New Orleans, Louisiana)

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at Dallas Fort Worth International Airport

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"You don't look permanently disabled." "$15,500 every eight weeks? Your life is not worth that." #PsO #exfoliativedermatitis #erythroderma #spoonie (at Orlando International Airport (MCO))