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lupus_looses
01-21-2013, 09:53 PM
Wow, what a trip. I am an Addison's Patient, a person who has no endocrine system at all from destruction of the pituatary gland, which in essence controls everything. So brain surgery, 3 x chemo, 3 x radiation and a few other things, and I was already medically dependant. I have and will always be on prednisone to make my heart beat, thryroid meds, growth hormone (nothing like a little prick every night) anything the system uses I do not have. Hell, I have to take stuff to get hungry! And yet I was (and still am) riding my beautiful show horse and riding alot, working out, and running 3 businesses.

Becoming a certified, licensed Life Coach (certified by Anthony Robbins and Cloe Madanes) was the best thing I did because about 9 months ago I was diagnosed diabetic (we were waiting on it) and then started going down hard. I would feel like my bones were going to shatter if I open the fridge door or lifted that cup. I resorted to using VetWrap (like an ace bandage) to tie my fingers open and flat hoping to avoid the frightfully bizarre and painful twiting they had started dancing nightly. And the regular pain I had from the car wrecks and bone damage from the tumor became hot rods being shoved into my bone shafts. Walking into things in the light, not able to get up and yet no sleep to let me escape. The pain pushed me over into an Addisons Crises and that means I am getting ready to dance with the devil. Addison's is an interesting situation and it is like a snake, with stress being the number one enemy and contagious anything being 2nd.

So I call the only Dr. I trust, and I have had teams in many states, and there is a Rheumy there. They had to bag me with fluids and steriods to get me out of crises and raised my steriods to too many with the step down. I was also given Plaquenal (after the test showed something) and another med. The massive steriod attack stopped the pain and cramping, most of the insanity, about half of the fatigue. I am about 6 months in on this lupus thing and find I am not so sharp of late, am dangerous (Fiskars Rotary Cutters for a sewer is great until you cut right thru your wrist and miss a major vein by some dead skin. The med for RA (I apparently have that too) wasn't working so off I came and the symptoms returned. I have had to try to find a steriod spot as they got some heart testing done to put me on a new RA med, possibly injection. No biggie, already do one. But I am riding Max, not whining and am very alone. The only blood relative I have doesn't SEE sick so of course I fake it. And he has become very hateful. Hate and anger are usually to cover fear. His issue. But I searched out a place where I can talk to someone who's been there and has the info I need to not only 'survive' but thrive.
Seeing some folks say it took 8,9 months to a year for a solid diagnosis made me feel better. Oh, the butterfly FINALLY appeared and they had been testiong me for all of the things Lupus has given me, But I have to say I am doiing very well for someone who is completely alone and has NO emergency contact much less help when I am in a Flare (frequent unti the meds get fixed) and on the couch ouring sweat, holding my hands to stop the twisting but am numb in my arms and can't breathe.

Sorry, been along time since I could say anything and the silence of life when I am down is maddening. But on the flip side? Short memory problems - things are new ALOT! I know in my heart and tell my mind that the pain, etc is a symptom and that I am bigger than a symptom, I still own me. And I can say that 95% of the time I will take a nap and go ride after serving the day's clients. I have finally made peace (kinda) that I am NOT wasting my life away when I am down. I actually have a basket of crochet projects and a few books where I rest. And it is a twisted, freakish fatigue.Never sleep unless something else is wrong, but the feeling of things sliding into place inside as you sit up, that hard, sour, big ball of GAK (I don't know, that's what descibes it) in the tummy. Weird fatigue.
I did not post to cry as I am still on of the most blessed person's on the face of this planet, I am blessed beyond what I deserve, I see things in a way that I can enjoy and appreciate life and the Addisons made me tired at the end of the day and now it is worse. I will push all day to do everything I can cram into the day, afraid I will miss something. And I will fall asleep anywhere. Couch, computer (slober does NOT hurt the keyboard), playing my guitar and on the lovable loo. And yes, the dishes will wait if I have to swap it for a ride with my Max or lunch with a couple of ladies from the barn, or going to a great concert. My dog will come and wake me up with is wet nose to get me to bed. I am proud, the house is better. And I almost have all of the 'toss' out. But being alone one must choose their direction. Having to measure out my energy oh yes, the wonders of the earth come before the chores, but things are better there.

When you change the way you look at things, the things you look at change.
Dwayne Dyer

tgal
01-21-2013, 11:00 PM
Welcome to the WHL family. You are not alone anymore. While each case of Lupus is different and (as you well know) many of us have overlapping diseases that are different, there is comfort that comes in finding a place where others understand. You have found that place. We are here for you.

I am so sorry you are going through all of this. I look forward to getting to know you. Once again, welcome to the family. Make yourself at home. Look around and feel free to ask any questions that you may have or just vent if that is what you need to do. The doors are always open

jmail
01-24-2013, 06:50 PM
Welcome to WHL lupus_looses Dwayne. Do they think maybe the Addison's (and diabetes) is from the lupus?

jolynnhughes
01-27-2013, 11:24 AM
Welcome! I love your philosophy of changing how you look at things -- something I try to practice every day.

lupus_looses
01-31-2013, 08:57 PM
Addison's is from removing a brain tumor and 3 rounds of radiation and 3 rounds of chemo, and that is where the diabetes comes from. And it sounded like a cry/bitch session up there but I just needed to say some things that other people understand and know to be real. I still consider myself one of the most blessed people alive, I am soooo grateful for the things I have done and seen, and even some of the pain in life. With a heart full of love I had to let some pain out. And thank you to you all for the comments. It is very cool that you KNOW it is real, the pain, the life you seem to pop in and out of mentally! At least things are new over and over! And I am a Life Coach, licensed and certified by Tony Robbins. Without a doubt that has helped me. I will be on the couch in pain and out of breath and control of my hands and feet, but with tools Tony gave me personally (walked on fiire 6 times, no burns or blisters) and the tools we are taught as coaches, I will meditate and can get my brain to produce enough domething (haha, too funny. It technically doesn't make ANYTHING! I am on meds or dead. too funny) to get up and go ride my 1,200 lb show horse. After a hard 45 minute ride, both of us dripping sweat in a 35 degree arena, I feel waaay better than I did 2 hours before warm on the couch. I do private and group coaching on life and it's events, but have special areas, one being for people with a chronic condition or pain. I developed the program and Tony approved it; Perception Over Pain: Live Beyond the Disease. I use it alot. Thanks for making me feel welcome. As far as what caused the Lupus, ? The Dr.'s call me a freak, a miracle, bizarre, unreasonable. They can't figure out why I am alive much less where anything came from. There are some other health issues but nobody knows unless I tell them. I have been used in 3 case studies. Unreasonavle? No. Living every minute? Oh YES. And expect the questions! Thanks so much.
Stay Easy.
Annette
When would NOW be a good time? Tony Robbins