Blue Hair

(no subject)

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Blue Hair

(no subject)

Good news for a change!

My new rheumy supports my need and desire to be treated with rituximab infusions. Additionally, she did a complete panel of blood tests (SEVEN vials) and is evaluating my overall immune system situation. I presented with actual joint swelling, too, which normally mysteriously vanishes when I have a rheumy appointment. The doc wants an MRI of my ankles before she'll call it RA. She also heard a friction rub in my heart.

It may seem bizarro, and it does to me, to be happy that I have signs of active, and multiple, and organ-threatening diseases, but getting the right treatment paid for by insurance all depends on a fairly arbitrary rubric and now I finally have enough boxes checked off. Yes, I am walking like a gimp because any pressure on my heels causes my ankles to sing and I've had persistent (and getting worse) chest pains with each prednisone step-down.

So pred was masking all this stuff, and now it's not, and the treatment for the sum total is not steroids, it's a biologic. And even though it is off-label and in trials, rituximab has already become a doctor-preferred standard when it comes to serious forms of Grave's disease... because it is *that* successful.

I could see remission as early as January.

I'll then have a significantly hindered immune system. But, if it works, I won't have to worry about waking up blind and all these surgeries won't be for nothing.

Now I just have to be chill until the 21st (next eye surgery). Then all the docs will email conference, and put the next part of the plan into action.
Blue Hair

(no subject)

I'm in a foul mood. I've been generally irritated since my last eye surgery making my vision worse (although it is a process, and the surgery was a success for its intended purpose).

But part of my crankiness has been brewing because...

well, I disconnected from nearly everyone in my life when I was 25, and started over and found new relationships. Then I got reconnected. And it seems that all at once, a bunch of those people started acting in the exact ways that put me off to begin with.

It's so odd to love someone but struggle with liking them, and wondering what to do about that. Do I change my attitude, do I write a person off, do I try to communicate with them about an issue?

Farts Rainbows is a perfect example - she actually farted a rainbow (or came as close to that as is possible without a colonic cleanse and bright lighting). When I read her post I didn't know whether to laugh or cry, considering that's been my internal snarky nickname for her for years. I thought (hoped) she had grown out of her presuppositions, her biased hierarchy, her...


I've been trying to gather the pieces and parts for an internet experiment in non-linear interactive literature. I keep hitting a wall because I can't get out of the darkness. I'm disappointed in people, the people in my life, and I want the project to be more than merely exposing the shitty ways in which people are willing to treat each other.

As a teen, I thought I'd grow up and eventually write horror fiction. I could house my project in that construct, I suppose. My hesitation is that I do not want the message lost in the metaphor.
Blue Hair

(no subject)

Next surgery is November 14th. It's been moved up because the previous surgery caused changes in position that have severely irritated the muscles that were not worked on. The doctor called the vessels in my eyes "angry".

I see neuro-ophthalmology on Friday and get more news about rituximab.

But I'm sorta worried about that exam, which is mostly of the optic nerves. I have gotten worse. At this point, my option would be IV steroids and a hospital stay until stabilized.

I have to call my mom. I can't just ignore her. And I don't know what is best. If I told her "it's over" she'd respect it without saying anything but goodbye. Maybe knowing that is part of why it all sucks. But anything more and I'd have to deal with her tears.

Whatever. I can't waste anything on that right now. My health issues are as much as I can handle. And right now, at noon-ish, it's time for bed.
Blue Hair

(no subject)

I've never been this pissed off in my life. And it's all the time.

Tomorrow I jump through another hoop just to see if insurance will pay for the one and only medication that has even the remotest possibility of preventing the flares that could lead to me waking up blind.

It's fucking ridiculous. I have 2 diseases that would benefit from my being on rituximab, and 3 separate top-of-their-fields specialists have stated they've never encountered anyone with such a damaging, non-stop, every symptom on the extreme end of things, case of Grave's disease. What more do they need? I just found out it might not ever get completely out of trials for Grave's because they've taken the research as far as they need to make credible medical claims and the rest of the process for the FDA to make in an on-label use might not be worth it financially.

And in the meantime, I have minor flares at least monthly. My only option to keep it all under control is prednisone and I've been taking so much for so long that the side effects are building up and causing new medical issues.

I just had so much hope for my last eye surgery and I feel betrayed... by nothing I can point at except all of it.

But tomorrow I see the head of endocrinology who is supposed to have conferenced with my other docs plus the head of rheumatology and he'll let me know if they think they have a strategy that will lead to me getting rituximab. And I have to put aside any anger, because I need these docs to go above and beyond and that's more likely if they like me. But my last several appointments I haven't been able to maintain my usual dark cheer, and instead have been complaining, irritated... a bad patient.

And I'm really over having strings of nightmares and stress dreams every night.

Another surgery in December. Then another 3 months later. Then at least one more after that. This feeling isn't going anywhere. They've all but admitted that they will not, after all, be able to restore my eyesight to non-visually-impaired. Better than it is right now - most probably - but good enough to ride a bike... ehhh, well, let's wait and see (hahaha).

I'll get through this because that's what will happen through no effort or fault of my own.
Blue Hair

(no subject)

My brain is ringing.

I need more than I have.

I keep trying to inspire myself, but that now approaches what could only be considered denial.

I am reminded of what got me here. I mean what *really* landed me where I am.

I cannot contain my rage any longer. I thought my days of burning were in my past, but it still eats me away.

Do you know that I've thought about causing a bad lupus flare just so I can qualify for rituximab? All I have to do is spend a couple of days in the sun, and then get my heart rate up way high for a few hours and I'll flop right over.

And I cannot stop obsessing about things long in the past.

It's all related. Another study came out re: thyroid disease and something they weren't even looking for popped up - women who experienced physical abuse as children are 40% more likely to develop thyroid problems.

I've always thought the stuff my parents did to me was what turned my immune system bonkers. Fear causes adrenalin and cortisol rushes, and both are responsible for immune system regulation.

But that's worse than Grave's when it comes to healing. I'm off-the-charts with Grave's, unusual, extreme. I'm sadly typical of those who went through abuse as children.

I'm having nightmares, if I sleep at all.

One pain triggers another triggers another.

I get brief moments of detached clarity and I try to use them the best that I can.

But I am empty. Spent. Can't afford hope because I can't take more disappointment.
Blue Hair

(no subject)

My eye surgery did nothing to improve my vision. I will need at least 2 more muscle surgeries. The surgeon said it was the worst she's ever seen, and my eye muscles are so bunched/swollen/tight that she can only do so much with each surgery - they have to be stretched and loosened but only so much can be done at once.

I am in a lot of pain. My eye muscles keep cramping. Turning my eyes sends pain up into my head and all the way down to my neck.

Ibuprofen was helping but now I have a GI bleed, so it's back to the nearly useless tylenol.

I'm feeling grim. All this trouble and pain for no noticeable improvement, and several surgeries ahead.
Blue Hair

(no subject)

All these eye surgeries are going to be for nothing and I'll end up blind anyway if I don't get biologics.

I have now had 3 different teaching doctors in 3 different specialties tell me that I have the worst thyroid eye disease they've ever witnessed or treated. This is confirmed by my Grave's forums experiences - everyone else gets pages of other people's experiences; I get:"wow. that sucks. good luck".

I have a great team when it comes to Grave's - all three eye docs AND endocrinology. They are fighting for me, and convincing rheumatology to play along and make a case for rituximab for lupus. This puts me in the position of actually hoping my echocardiogram shows mild pericarditis.

I'm a little less anxious about the post-surgical adjustment procedure. The one right after surgery should be easy - I usually get 4-6 hours of time that I can't remember too much of, so I should be doped enough to be compliant and not apt to have an adrenaline rush. I'm still very concerned about tolerating a second adjustment a week later. Even if I don't need any adjustment, I still have to let the surgeon cut back the sutures. Conscious and eyes open. No way to use visualization, so all I've got left is breathing to help control any ascent into panic.

The stress I am experiencing is so intense I am dissociating. and thankful for it.
Blue Hair

(no subject)

After discovering that some additional medication took away the constant tremors and unwell flickering, I just added it to my routine. It's working too well to stop, and it tells me that my anxiety is really high.

I'm really focused on gaining weight. I'm counting calories and using a spreadsheet to mark targets and estimate excess calories. I'm getting a scale, so I can adjust accordingly. I want to gain 1-2 lbs/wk, and not more. When I get to 115, I'll keep the same calorie goals and add back some exercise and yoga so I can build muscle.

I was really losing my perception and computation skills there for a while. My thoughts were ranging from obsessive to harmful to bizarre. I think I finally understand why my coping mechanism as a youth and young adult was to feed the fire and burn burn burn... because then it would become so loud the logical part of me that recoiled in horror at my actions was unheard.

Surgery is 2 weeks from tomorrow. Next week I have a 3 pre-op consults: one with the surgeon who did my decompression, one with the surgeon who will be operating on the 14th, and one with anesthesiology.

I'm pulling myself along. I know this surgery, especially for its benefits, is pretty easy. It the whole adjustable suture thing that has me freaking out. I mean, I do have some... generalized anxiety about having surgery, in the sense that I've had so much done in such a short time and my body just doesn't want to be cut or otherwise fucked with. The rebellion, as usual, will be in the form of swelling.
Blue Hair

(no subject)

If I wasn't having surgery in 3 weeks and I didn't need to be healthy in the meantime...

after covering it for 3 years (and me being on it for 6), Medicaid decided to deny klonopin. I ended up paying for it out of pocket, and will need to do so from now on apparently.

Abrupt cessation of klonopin can be deadly. If I didn't need to be healthy, I'd let the withdrawal process start, then I'd end up in the ER with a 150 resting heart rate, cold sweats, tremors, possibly seizures, hallucinating, paranoid and loaded with magical thinking.

Then Medicaid would end up paying for a hospital stay while I go through withdrawals.

But I have to stay healthy for surgery, so I had to buy it myself. It was a lot (to me - $48) at Walgreen's, but I needed it before I could resume the capability to shop around for better pricing. Thankfully, Costco (you don't have to be a member to use their pharmacy) has it for $12.50/mo, so that's where I will be refilling it.

Benzos work for me without turning my mind into soup. The state prefers buspar over benzos, and I do not tolerate buspar *at all*. Benzos do their job without a lot of side effects, AND I'm on a relatively low dose, so my crazy isn't obliterated, it's moderated... and likewise my logic circuits.

But this all makes me terrified of what might get denied re:meds after eye surgery. I've left a message for the doctor asking her to go through the pre-approval process now, but it's the stupidest system. Only the doctors can make the requests, but they don't tell the doctors anything about approval/denial. Instead, they SNAIL MAIL A LETTER TO ME. So it's 7-10 days after the request is made that I find anything out from them.

Like I wasn't stressed enough about this surgery. Worrying about not being able to afford post-op antibiotics and pain relief scares the fuck out of me. And then it happens again in the fall when I have the second surgery.

It's defeating. More cuts to Medicaid are coming. And higher copays.

It's making me very sad, on the verge of tears. fight fight fight. I'm fucking sick. Fighting *that* is all I've got, but I'll end up dead if I don't find the reserves. Expenses are going up, with no increase in revenue in the next year, at least.

It is what it is, so I need to process the emotions and move on. surgery money bureaucracies travel needles

and strange dreams.