A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Sunday, September 25, 2011
About 8 times as long as I'd like
About 8 times as long as I'd like, was my response. And it's true. If I could make it 3 days living with the pain and and the swelling and the disruption in life, it's going to last 24 days. I think it's a pretty fair assumption.
If things are quite disconnected in the writing today, it's because I'm getting quite a lot of the brain symptoms of a Traps flare. Words come, but they aren't the right words. Calling the dishwasher, that thing that cleans cans, isn't exactly up to my normal functioning level.
I've also called the cat a goat and the car the "broom-broom". Yeah.
I had to double the prednisone and was literally climbing the wall. It's not that I had more energy, it's just that the agitation was hard to cope with. I then did 1.5 the normal dose and today am back at the normal dose. No headaches!!
Yeah, still on the Chronic Illness Cat kick. I made that one.
It's often hard for people to get the CNS (central nervous system) side of a flare because it's so personal and so hard to visualise.
For me, I see lots of Auras, like you would with a migraine. Little white dots. Little black dots. Stripy lines. Zig zag lines. It's never the same, and I'm suddenly acutely aware that I might be hit with a horrid migraine.
But it doesn't come. That doesn't mean, however, that things aren't going crazy inside.
My eyes are still dry, but not horribly sore. The words are on the tip of my tongue,but I just can't get them to form sentences. I feel like a caveman grunting, unable to correctly name objects I'm talking about.
I find that my reflux is significantly worse during a flare. And I cope with that in the take a tablet way. You could either raise your normal dose of reflux drug, for me it's omeprazole, or take Slippery Elm powder capsules. I've done the powder in yoghurt thing but it's like trying to down a slightly sweet smelling sawdust in a slightly tart milk product. Eww. Eww. Eww.
Take the capsules. I've had a naturopath suggest that it would be wise to cut out dairy and wheat during a flare, to reduce the triggers for inflammation. But, if you're like me, surviving on hot tea (with milk), gummy bears and dry toast might be the only way you're getting calories if you have no one on hand to cook for you.
Last night was probably the worst pain wise for me. My hands were massive and bloated. The joints of the fingers were huge and bright red. The skin and bone between the joints were unaffected and very white. When held sideways, it looked like the Canadian flag, sans the Maple Leaf. Red White Red.
The entire hands were huge and puffy and only the left wrist was affected. The right one, oddly enough, being my dominant hand, was fine! Oh the pain was horrid.
I took 2 voltaren and some ibuprofen and about 90 minutes later they looked practically normal. However, the pain did remain in the fingers which was sucky, given the amount of pain killer in the system. Ice would have made sense, but I think I was too brain dead to think about it. Holding them and giving a gentle massage to the finger joints was all I could think to do.
I've been doing a lot of reading about 5-htp, the natural serotonin supplement. Similar to melatonin, it works by increasing the levels of serotonin in the brain to work on things like anxiety, appetite, sleeping, etc.
However, none of the reading I did happened to log into my brain that you CANNOT take 5-htp with SSRIs. This is because your brain has already raised your serotonin levels because of the SRRI and by taking the 5-htp, you get a very rapid, inflated dose of serotonin. And this is bad. You can get VERY, VERY sick.
Let me tell you, sick is just the start of it. I didn't realize this and popped 2 5-htp last night. I take 40mg of Citalpram in the morning and have since December 2005. I've never actually questioned getting off the drug as I feel very comfortable with it's benefits. However, since reading about 5-htp, I thought maybe it would help with my sleep and help me get off the Seroquel since the 5-htp helps reduce anxiety and improves sleep.
I think melatonin would actually be the better option as it won't make me sick. Taking the 5-htp with the SSRI made me feel very strange, very agitated and very confused. I thought it was just the flare x 10000 but quickly realised what it was when I googled: Can I take 5-htp with Citalopram? I was very sick to my stomach, I felt confused about where I was and all I wanted was to lie down.
So please, if you're stumbling here because you too want to take 5-HTP with an SSRI (maybe to get off the SSRI), get off the SSRI first and then take the 5-htp. It's not worth the risk.
Also, trying new things during a flare in which you are cognitively challenged is not a good idea. Wait for better brain days.
I started a new meme for my currently infertile (are we considered secondarily infertile at this stage?) friends. It's Infertile Panda. You can find her (based on the giant panda Mei Xiang) here and she even has a Facebook page here.
Can you tell I've been stuck home alone all weekend? Yeah.
Feel free to 'like' her page and that of Chronic Illness Cat.
I promise the memes are witty and hilarious. That's because I mostly copied and pasted other incredibly witty things. Some are my own.
I've been stuck at home, all alone, even the cats are outside. And all I can think about is the biological clock chiming loudly. It sucks.
Stop chiming!
If I felt better, I'd feed it with cake. But for now, it gets Vitamin C with Rose Hips. Ooooh, fancy!
If I were well and had a choice, I'd have a family lof 6. Four amazing kids. 2 fabulous parents. A perfect happy life.
Instead, I look at the mess around me and wish it were all so different. I am eternally grateful for Soph and for being alive, but the loss, and the grief are so overwhelming at times.
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare multisystem genetic disorder characterized by unexplained periodic episodes or "attacks" of fever associated with additional symptoms including muscle pain (myalgia), abdominal pain, headaches and skin rashes. The specific symptoms can vary greatly from one person to another. The duration of the characteristic episodes can also vary, lasting anywhere from a couple days to one week to more than one month. Onset is usually during infancy or childhood. TRAPS is caused by mutations of the tumor necrosis factor receptor-1 (TNFR1) gene that encodes the 55-kDa receptor for TNF.
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