I just returned from my doctor's appointment. I am absolutely exhausted. I spent a long time preparing my notes and meds and addresses and everything last night. I still have a mirgaine so could be just no sleep but taking my Midrin for migraines and got a few more too.Perfect example of what weird things my cushings syndrome does to me. I was SO EXCITED to be going today. Oh my GOSH I didnt have to pay! I got to see my favorite nurse in his OWN practice complete with a lab onsite and two doctors there and a HUGE staff. He's the boss but he isn't a doctor although he has a doctorate and masters in chemistry I think. He was a paramedic, then nurse and also a volunteer fire chief. Small towns are odd But what i am saying is, in oregon a nurse has almost all the privileges of a doctor and he knows more about me than any dr ive ever seen.I hadnt seen him in a year and a half and he remembered everything about me. We hugged. It was like seeing a long lost friend. I was so broken hearted when he left his old practice but it wasnt his and the doctor he worked for was such a chump. Horrible. We had a quick laugh about him but he let me know without saying so that he doesnt want any records from that place. Incompetent boob that dr was. Anwyays. I was with him for 1.75 hours. That's a long time and both of us talking a mile a minute. He knows drugs realllly well and so do I so we were almost chatting like friends. Most of my care centers around medicines so it's good. Then we hugged again. And again before I left lol. He's like this big teddy bear and he cares. To have a doctor taking care of me... I am not used to it. Used to taking care of myself.Guess what? He said we have so much catching up to do and tests to order and specialists to see and meds to monitor that he wants to see me EVERY WEEK. I have never had a doc say that! And it's paid for. OH GOSH. Im so excited anyways, that my cortisol is up, my blood pressure is low [he's worried about that we will have to change meds it's a long story] and I am insomniac for a while longer. Then I will crash. So, my cortisol is telling my pitiuitary gland HEY SHES UNDER STRESS ASK THE ADRENAL FOR MORE CORTISOL only my adrenal doesnt work so it doesnt. So my body thinks im under like huge stress, but really I am happy. See why it's hard to be happy? Big reason the phone is hard for me etc. is not because of the bad stuff, but because I am at heart social and enjoy talking to people and friends and well again, my body is like DUDE STOP THIS WE CANT TAKE IT. And im thinking YIPEEEEE.So, this one appointment will keep me off the phone, no visitors, no going out, for at least three days. Next week I get to do it again but it wont be so exciting I hope. The office is so cute it's in the woods. I love Oregon. A scenic route! And I had to go to the hospital for some labs usually wont tho. He agrees there's something wrong with my eyes. Mirgaine is tied in there I THINK. We're sending me off to a real eye doctor- I mean a real one ya know? I hope it's not infection or sth serious but this pain, vision loss and sensitivity to bright colors is worrisome. GOT A CALL and my appt is for Friday. For the eyes. Talk about quick!Gonna get that colonoscopy finally but will wait for a bit for some more normal test results first. He said he knows a place that will put me OUT with an IV. So I said let's do it. Then maybe get a diagnoses for one of my worst problems and meds. And ah what else? Getting my MRI films to see whats wrong with my back and check on the dead hip bones. Knows a lady who does pain management but my insurance may not pay for it which is a no go no money. He said we can try methadone? Like morphine for home use. I dont want to do that but i dont want to be in constant pain either. Unless something is wrong with my back that will threaten my ability to walk, [because my thigh IS numb] I cannot have any surgeries with cushings. It would really be dangerous. So pain management is the key for now. I told him percocet well id rather be on that with the codeine than methadone. I dont like morphine. We shall see what the MRIS show and how much pain i can take. And my insurance doesnt cover codeine i think or percoet but the generics are cheap. I will also have to pay for one drug because the insurance doesnt.Oh and I told him I had to lie to get insurance. He gave me a thumbs up. Hard to imagine being such a mess that no PAID insurance will cover me but it is so. So if my disability private insurance company needs their forms filled out, he will do it and NOT put it in my chart. I told him this was the last resort i was almost ready to give up and all options had been exhausted. He said ive done a fine job of being my own doctor now he will take over for me. What a relief. It's not like I enjoy doing all this myself. Ordering drugs from the internet etc. God was really looking out for me today and lately so much so with finding Fogg [my doc] again. And it was all seemingly by chance yet it wasnt- providence I tell ya. So im kinda in a physical crises right now, but mentally I sure feel good. Will rest a lot and take it easy. Ummmm I guess I talked myself out. Im still excited i feel like shouting DOWN BOY DOWN. I am such a fighter you know. I fight for so much. But it's days like these that I'm glad. Oh. And Fogg is going to help me stop smoking. I had to admit I was really addicted and needed help. Embarassing to say the least. Im not usually addicted to anything. Never alcohol or even pain drugs but smoking... yikes. We're thinking of ways to handle it. Patch if the insruance covers it, but he really wants me on pills. Only i had a reaction to the wellbutrin last time but i didnt smoke when i was taking it. It totally eradicates the whole habit. We will work on it.May everyone's day be as blessed as mine has been You all are very special. Thanks for letting me drone on and on. Now if I forget a detail I can look here for it. And if i dont remember it or write it down eeks Oh and no, I dont think I will be going to see an endo here. I have never ever had one help me. This nurse and his practice I trust and that doesnt come easy. He didnt even mention seeing an endo. We'll shoot me around to specialists but not an endo. Anything he doesnt know, he looks up. And he has a friend who is an endo and he will call them if needed. He's the smartest doctor ive ever seen who isnt even a doctor doctor but a nurse! That is time tested. And having a lab onsite, and all that well its just so nice. I told my mom I dont wanna move now from Oregon. from the area. I want to stick with him and get myself well that's for sure. Oh and he did say when we get down to 10mgs prednisone he will put me on an inhaler of steroids so i get it in my lungs, which was the problem to begin with and even tho they dont bother me much now, they will as the steroids go down. PRETTY darned smart. Soon, a year or so? I should be able to get my adrenal gland tested. That will be cool. See if after 11 years it wants to work!
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