Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Thoughts and Prayers for Megan, her Dad and Family

My thoughts and prayers with you

It sounds like you have a lot on your plate at the moment.

I've heard it said that you're never given more than you can handle, (although, I'm sure you feel that you have had more than your quota lately.)

Stay strong.

Sending positive thoughts your way.

Thanks for bringing us up to date, Megan. I've just sent you a PM.

Wow - I hope things improve soon.

Megan, you are one of the people who defines 'tenacity'. With everything on your plate right now, be extra careful to take care of yourself as well. Sorry about all the trials you are enduring.

Hi Megan!!!

now redirecting all warm light and good thoughts towards you and your Dad

(including specifically asking for the non-photosensitive good kind)

should be plenty for the furball, what's his name again, Maki?

Have no idea what a hepatologist is either, don't they work on lizards and turtles?

oh, maybe that's a herpetologist, please make sure when you make that appointment, you don't get them mixed up!

Have you turned down the brightness on your Mac and maybe used the Universal Access panel to make the fonts and screen easier to read?

and have you tried selecting text in the page and then using command-shift-S, let the computer read it to you?

Dow

should sound like this

Hello Megan,

Thoughts and prayers for your father and your family. Hope whatever it is, he comes through it.

Take care,

Tim

I am very sorry to learn of your father's condition. You are dealing with so much right now. You are an inspiration to all of us! Being a fixer is a guy thing. Sometimes we just need to be there and stop trying to fix everything.

All the best,

Craig

Hello Megan,

I will be praying your dad can battle the infection, my father was battling this as well.

Pray your health improves so some of the stress goes away as well and your boyfriend comes to his senses. We can not fix everything and would seem to be his loss.

Hang in there and keep the chin up.

Tim

Thanks Sue. I don't think my doctors are on top of it - they just seem to pass me on to someone else because my symptoms and my "numbers" don't fall squarely into one nice little diagnosis category. Some just tell me flat out that it's all in my head - during an acute episode right after xmas, the on call doc told me just to "ignore my symptoms and get on with life". Each specialist I see seems to be competent in their area, but useless in others, and they never take ALL my symptoms into consideration. Ie my hematologist swears that NOTHING causes eye pain, so he rolls his eyes when I say that I have bouts of severe eye pain. No joke. (Hand me your pencil, I'll show you what eye pain is buddy...) Glen told him to google eye pain, that was pretty funny. This is exactly why I always bring someone to all my appointments - there's always something so ridiculous that I'm sure no one would believe me on, so I need to have a witness. My GP still has me "undiagnosed" from AS - he won't believe a word of what my rheumatologist says, and keeps telling me that taking enbrel is useless (he's kind of got a point on the enbrel thing, but not that way - I'm on double doses of enbrel right now just because it's losing its efficacy). My neurologist keeps confusing my test results and has no idea how to interpret the results he does have (PBG is not the same as PBG deaminase, duh). Most of my doctors say it's not porphyria because I don't have severe abdominal pain with my attacks - but then I explain that my neuropathic pain is so much worse, with the amount of morphine I need to take the edge of that, the abdominal pain is quite under control. They just don't understand that. When I saw my rheumatologist in Dec, I was on whopping huge doses of morphine, so when he did my exam, none of the usual tender spots were tender, so he decided that my fibro/AS are in remission - I had to explain about the 60mg of morphine I was on, and he told me even the highest doses of morphine won't do a thing for inflammatory arthritis pain. Trust me, when the morphine wears off, my SI and feet are very unhappy. The waitlists here are just stupid long to see the new docs I've been referred to... but I'm still looking for answers as to why my legs get so weak they just give out sometimes.
Sorry for all the whinging. I'm hoping someone will figure this out, and I hope there's a treatment, but at the same time, I'm trying to get myself used to a new normal... hope that makes sense. Glen thinks that trying to cope with the way I am now is a sign that I've "given up the fight", but I haven't really... I guess I'm more like a "prepare for the worst, hope for the best" kind of person. Glen usually is super optimistic and denies that this could be a chronic condition, so I think when at the last apt, he heard two docs tell me to just get used to it, it hit him pretty hard. Hopefully he'll come around. I'll deal with the relationship issues later.
Right now I'm just so thankful that my dad seems to be doing ok. He's still in ICU, but my eye pain, fatigue, and nausea are too bad to get on a plane to get home to see him. Wow, I need a vacation from my own body for awhile.
I wish I could meet Mookie one day - he sounds like a real character. You should really post a video of him doing some of his crazy things.

Thanks Molly. Yes it was good that my mom forced him to go to the doctor, and there happened to be a very good GP on call who instantly made the right call and instructed my dad to get to the ER pronto. Glad to know there are some very good doctors out there.

My small furry is still hanging on. A few days ago his health had declined so much that he was just laying in his bed and couldn't move. I started giving him zantac and force feeding him with a syringe, and he's actually keeping down food and water, and moving around again. Maybe he'll make it.