Sunday, January 24, 2016

Found My Hallelujah

I start all of my English speaking writing classes with the call and response: "I am writer, one word at a time. One word at a time, I am a writer." Yes, I stole this from my Catholic school teaching days where we often start retreats with "God is good, one day at a time. One day at a time, God is good." But they both just seem to fit so well and it makes sense. Like I tell my students, you become a writer by putting that first word down on the page, and then another word and another until it becomes a sentence, and then a paragraph and then a story and maybe even a book. As it is with life, though there may be many bad things happening to you or surrounding you, there IS some good in every day, even if the only good is your beating pulse and the next breath that you take. And so, I've also applied this philosophy to my illnesses, one symptom, one problem at a time. It makes things a lot easier to deal with.

So...without further adieu here is my health update...none of which I'm letting stress me out because there is so much more good in my life and so much to be thankful for.

2 surgeries, 4 mouth sores, and one round of Botox later...

Before Surgery...
1) Hysteroscopy D& C:  I had this done right after the Christmas holidays. Threw everyone into a frenzy when they heard the word surgery, but really it was a minor procedure. The worst part is always the after math of anesthesia. I won't go into detail as to why I had this done, let's just say my monthly friend has been quite erratic lately and I really need some answers yet but at least we know what ISN'T wrong (everything was benign).

2) Finger Surgery: Two weeks after the D& C I went back under to clean up the infection on my ring finger. Now, I know what you're thinking...will this poor guy end up like the last one?? :O Truth is, maybe...maybe not. I have a new hand surgeon now, Dr. Khorsandi...who is absolutely amazing! He says he will do everything he can to save this finger tip and this procedure of getting rid of the dead tissue was step one. If this doesn't help it heal on it's own, then he wants us to consider a skin graft. That is a more complicated procedure, but would still help save my finger.

Going through this a second time isn't as traumatizing as I thought it would be. I still get down about it sometimes...the thought of losing another finger tip and what that might mean for my career as a writer...BUT...when I think about it some more...I realize that it makes my accomplishments that much more special and unique...that when people remember me they'll say "damn she did that with only the use of 8 fingers!" LOL...not only that, but my life will make a GREAT made for TV movie some day!

3) Botox- HELL. TO. THE. NO. So...I have been trying to get Botox injections in my hands for almost the last two years. Since I first started having really painful ulcers and problems with my Raynauds. But no one, not my rheumatologist or previous hand surgeon would do it. I found one vascular surgeon in town who was willing but he only had appointments like six months out and I was too impatient to wait so gave up. Well, one week after the finger surgery, I suggested it to Dr. Khorsandi, and although Botox for Raynaud's is not FDA approved, there have been a few studies that show improvement in the blood flow and I've had a few sclero buddies try it out and have shown improvement, so.. Dr. K had some Botox on him and we both decided to give it a go. He was eager to have me be a guinea pig and I was ready to try ANYTHING to help with the healing process. (The reason these ulcers get so bad is cause Raynaud's prevents good blood flow to the hands, thus delaying healing and increasing risk of infection..Botox shows promise of increasing blood flow)

BAD. IDEA. First off, the injections themselves were painful as hell. If it was that bad on my hands, why on God's green earth would ANYONE ever want that in their face?! I'll take the wrinkles thank you. Then, I don't know why, but I didn't sleep at all that night from excruciating pain in every inch of my hand. From my joints, to the nerves, to every muscle was in pain and tingled. I got up to go to work, showered, got dressed, got in the car and made it half way down the block when I realized I probably shouldn't be driving one-handed and in so much pain. Came back home and spent the day in bed literally in tears popping Vicodin and Tramadol that didn't do anything but give me nausea and make me sleepy. The pain persisted until about 24hrs post injections (3pm the next day!) Literally wanted to saw my whole hand off.

How do I know it was the Botox? Because the day after surgery I felt fine! No pain or tingling. I went to work, baby sat, went shopping etc. I was fine every day with very little discomfort UNTIL I had those injections. Today, 5 days after the Botox, and I still have moments of terrible shooting pains in my fingers and hand. I don't care what Botox can do, it's not worth it. I will keep taking vitamins and saying prayers and meditating for it to heal on its own. Botox is for the birds! I do have to admit though, that while my left hand continues to turn purple and blue, my right hand has not recently... but it still hurts.

4) Mouth Sores- Yep, they're back. Painful and annoying Lupus mouth ulcers are back. Maybe it was from the stress of two back to back surgeries. Maybe it's my poor sugar filled diet (I eat what I can, which consists mostly of fruits and carbs...veggies still make me feel ill). Maybe it's cause I decided to lower my prednisone dose to 5mg without consulting my doctor.(I'm back up to 10 to see if they'll heal) Maybe it's all of those things put together. Point is, if I was afraid of gaining back the 18lbs I lost last year I can put those fears away. I'm back to eating small bites and soft foods until these things go away. I have two on my lip- one that turned into a bad chemical burn from me trying to remove my upper lip hair despite the ulcer (hey, I still want to look cute...a girl's gotta do what she's gotta do, and a mustache ain't cute even on a sick gal)..and I have two inside my mouth (which have started to heal thankfully). They are not as bad as the ones from last year, but still annoying.

5) Everything Else- I have NO idea how everything else is doing internally since I won't get any blood or urine work done till I see my rheumy and my nephrologist mid February. I DO know that I still have ZERO joint pain or muscle aches. I have a little fatigue but only when I do too much and my lungs don't hurt! I can sleep lying flat still and only have heart burn because of the antibiotics I'm on. I do think my eye sight is getting worse, but that's probably just from over use and not my diseases or the meds. I'm still infertile, as far as I can tell, and my blood pressure continues to play games with me. Sometimes it's in a normal range, sometimes it's stupid high. I've just stopped checking it since it stresses me out. The way I see it, if I'm meant to have a stroke, then so be it. I can't be bothered, I have things to do. :)

Basically, I have too many things to be excited about this year (grad school, writing residencies, conferences, teaching gigs, performances, publications, babies being born etc.) to focus on what these diseases MIGHT be taking away from me. Right now, it just feels good, good to be alive.

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