Celiac does NOT sound like something you want to have, esp. with RSD It sounds like a real pain to have to be so aware of everything you eat, with major consequences if something slips by. I'm sorry to hear that. It sure is hard to fight more than one difficult health issue I'm also fighting fybromyalgia and CFS plus today I just finished my last chemo for ovarian cancer - hooray! (and my prognosis is really good because we caught it early). I had an atypical RSD experience - I tore ligaments in my left foot and had to have extensive surgery, then started with the typical RSD symptoms a few months later, and my very sharp podiatrist had heard about RSD and immediately sent me to a pain specialist. I was going to get my first lumbar puncture when the guy retired and sent me to another doctor. Then before I got the puncture, I ripped my shoulder up and had to have another major surgery and the RSD spontaneously went into remission and has never come back. Then a few years later, my daughter broke her foot and unfortunately went into the same pattern but hers stayed, and spread over her whole body. Then into the lumbar punctures, etc. that I talked about a few posts above.

Anyway, I'm glad to hear it's the Utah doc's primary treatment! And I see that he's certified - another good sign. I remember talking to his office, too, and they were more-than-average helpful and professional (I called around to all of the offices listed on the Calmare page when I was doing some research). That sounds like a VERY good sign. Let us know how it goes, please and if it does't work for you, then I'm really glad to hear that you're cleared for ketamine and don't have to fight insurance.

And that just reminded me that I have to call two medical billing places and tell them that my insurance advocate has my permission to talk to them - one of those really frustrating situations where you have surgery (I had to have 3 surgeries during the 5 months of cancer treatment) and your main doc is cleared with insurance, but they pull in an assistant that is NOT cleared! SO frustrating to fight it!!!!!!! My husband's company got an insurance advocate a few years ago that the employees can use, and it has been SO helpful. It takes away a lot of stress.

Well, enough babbling - I need a nap now! I'm just so buzzed on steroids from the chemo that I'm climbing the walls I hope I can get at least some rest.

Whew! finally coming down from the steroids a bit ... I hope I can go to sleep now. Down with side-effects!

It's rough when it feels like the world is against you, medically anyway. It sounds like your boat isn't any better than mine but I'm glad to hear that things look good and your treatment is over. That is definitely awesome news.

Having celiac really isn't so bad, and I don't mind. Honestly. But traveling away from home can be tricky. Where I live in Utah county and near Salt Lake City is a mecca for those of us that have to be gluten free. The thought of traveling to somewhere that isn't is just super scary. I have no desire to live off of prepackaged, ready to eat food for two weeks. It wouldn't be healthy, I'd feel like hell, but the risk involved in eating out at new places while undergoing a treatment would just be too much. I suffer sever neurological side effects if I get "poisoned" that last for weeks, which is why I choose to seek treatment close to home.

Thanks - I'm thrilled to be finally done with chemo! It's kind of a strange feeling, though, too - at least while you're on chemo, you have this feeling of "I'm being treated for this disease and we're fighting it", and when you've finished, you're kind of like "Wait! isn't anyone going to treat me?" Kind of an odd feeling. I've been doing some reading lately and I guess it's a common feeling. I'm getting a post-chemo CT-scan in a few weeks, then I'll find out what my follow-up regimen is.

I'm glad to hear that you have good local support for your diet. Most people really take eating anything for granted, that's for sure. Travel does sound like it's a real pain, though, since your reactions are so severe and I'm sure it make the RSD worse, too

Well, I just got home from some IV fluid infusion (just saline) that helps the chemo side-effects to not be so bad, and I'm heading down for another nap, which just reminded me to share one last tip about Calmare - be sure to schedule in lots of post-treatment rest time. It's kind of like your brain is re-learning about the pain, and it's like you're taking a semester of college classes in one treatment! It seems to hit about 2 hours after treatment - you're just totally zonked for 12 or 14 hours. Then it gets to be less and less "zonked time" after each treatment, then by the second week you're feeling where you can get up and around and all over. I remember when my daughter did a cartwheel down the hotel hallway (this is, of course, if the treatment is working for you, as I'm hoping it does for you). If it does seem like it's working, I highly recommend listening to your body and just going with the need to rest.

Best of luck, and I'm heading into my post-chemo icky after phase now so I probably won't check in for up to a week.

I hope you're feeling well soon! Thanks so much for all the helpful info, you're awesome.

I got my appointment next Tuesday with Dr. Pulley. (ketamine) I still haven't gotten approval for Calmare from my insurance and I'm desperate for relief. I'm a vendor at my local farmers market. (got bored, started a business while I goof off with this disability crap) The season ends the last weekend of October so I guess I'll schedule the treatment for the first week of November. If I can't get Calmare approved by then, I'll go ahead with it. At least something is going forward. And I want it before the end of the year anyway because I'm so close to my out of pocket max that I want to hit it instead of starting over with a new deductible. Forget that! Excited! This is gonna be awesome. Well... that's the plan. Thanks for all the support. And, if things don't work out I can go back for the Calmare so at least I have that going for me. It's just a long wait for that. And in the meantime my business should take off over the winter at I'll be able to pay for it even if my insurance people are still jerkwads. Life is awesome. (also, I took two tramadol today which I rarely do for my pain so I'm a little loopy so that could account for my feeling good. But whatever!)

Hope your appt with dr. Pulley goes well. Where does he practice and do you know his typical protocol

Billy Alexander

His office is in Salt Lake City. It was a 45 minute drive for us into the city. My husband hates driving the freeway, so I drove up. He drove home because driving (or riding in the car) really just kills me and I wasn't okay to drive after we got there because I took 2 instead of 1 tramadol. I wasn't messing around with that sort of pain and I'm glad I didn't. We hit rush hour traffic on the way home and it took nearly two hours! On the other hand, we did stop at a GF bakery in the city and I got a churro flavored cupcake, a rare treat for me.

It was a good news, bad news sort of visit. He asked why I came to him when the clinic that did my SGB was so much closer to me, so I told him that the clinic that did it was recommending SCS or a pain pump as the next step and I wanted to try something else before I let someone cut me open and go that far, and that I was there specifically for the ketamine since he's the only one even remotely close to me who does it. So far so good... he got a history from me (on top of the medical records he had already from my PM doc) and did a quick exam. This is where it went to hell in a handcart. Despite the car ride, I was having a exceptionally good day which means I wasn't showing some of the more obvious physical symptoms at that exact moment in time. So even though he had a copy of medical records on his desk (that I could see sitting there!) that say in them that I have CRPS he told me that he doesn't know what is wrong with me but it isn't CRPS... then said something about idiopathic blah blah blah. So basically, he has no freaking clue what the crap he's talking about and has no explanation but whatever lets roll with the word "idiopathic" because it's big. Never mind that there is ALWAYS a reason that someone is in this much pain every moment, every day. At any rate, he said he'd do the ketamine anyway, and that if my insurance says no he'll resubmit based on the previous doc's diagnosis. How magnanimous.

All this has me so messed up right now. It took 5 years and one month to get a diagnosis. In that time I was called literally crazy. My medical records state at one point that I have somatization disorder, which is being literally so crazy that you manifest physical symptoms. That doctor put that in my records without ever saying a word to me, although he did quietly refer me to a shrink for "depression" related to my pain. I found out about it when I requested my medical records. Another doctor told me to my face that my pain was caused 100% by all my pent up anxiety. I sort of lost my temper and blew up in his face, screamed at him about how I'm not crazy (cause that's what sane people do right? ) and refused to leave his office until I had my medical records and never went back. No matter how awful CRPS is, it was such a relief to have a diagnosis. So today was so incredibly terrible. My husband said he was surprised I was able to keep myself in check. He knew I wanted to jump across that desk and throttle the guy.

All I keep telling myself now is that I didn't go to him for a medical opinion. I made a choice about treatment, decided on ketamine and he's my only option. I don't need him to agree on my diagnosis, I only need him to stick a needle in my arm and drug me for a week. Now I just need my emotions to get in line with logic and it'll be okay.

FYI, the doc I saw today was not Dr. Pulley but another doc at the clinic. I don't know who, I don't frankly care. I just want my treatment so I can get on with my life. He was a perfectly friendly guy and I don't judge him poorly over what happened. I'm just frustrated and mad because I didn't want his diagnosis, I just wanted his treatment.

At any rate, for now all I can do is wait for my insurance to approve treatment. So, for the next 1-2 weeks my plan is to sit on my cell phone ready to answer it at a moment's notice. I want to schedule the treatment for the first week of November. The farmers market season will be over then and my husband just got promoted so it'll give him a month to settle in before taking FMLA leave a little every day for a week.

Don't blame you at all , I was in my first day at court with an idiot attorney telling me I was there to settle my case which I was Said obviously no way. I was there to ask for a day for a trial ,I have rsd I won't Settle just for foot and ankle injury and she told me ,wc is not what I want and stop acting like that way I did,I get mad and I tossed her a copy of my record stating rsd , she got mad and left , i was there standing and looking under her notes ,an idiot worse than her wrote on my attorney office I suffer a continues trauma injury ,they didn't use the term rsd , rsd not continue trauma,makes a huge different to see an error so huge going to trial and no one care but me ,she came back after few minute she and I where called the main attorney offices ,she to complaint about my behavior and I to ask for an attorney who truly knew my case , after all she came with sense and tell me ,there was an miss understanding on her side whichever to me ,I dint care and told her ,just gave me a new day and we are done here I will talk to your boss and see who mistakes is this and she did.
I'm sure you are right and also requesting what you know should be done for you ,keep trying and don't give up, many people will take our cases and conditions like nothing important, scs is nit something you may want and I'm sure ,try all you can do first ,I also don't want drugs , I ended on scs after trying with no success 7-8 symphateic lumbar blocks , local cortisone injections ,acupuncture ,tens units did work but not the deep cover I required , several sessions of physical therapy, never any dr mentioned ketamine or calmare , I will try that first instead of scs , scs is living hell,no drugs are added or decreased from my routine after all,no one told me ,scs will never cover bone to bone pain only neurological pain,at the end ,I had no possibility to have a surgery to fuse my bone that are rubbing and with rsd ,no surgery is ever recommended by any dr ,so no , no scs unless you can longer try or fight for anything else ,sucks for real .i had three surgeries to get scs positioned in a right place and ended with rsd spreading more that what I had, no ,no surgeries until someone give you a certain percent of true and honest opinion,rsd won't spread if you precede but I'm sure ,no one will say that ever ,so no ,I'm telling you honestly with all the pain I'm stiff having ,no surgeries if no spreading is guaranty ,try and fight for what you believe is right for you don't mind anyone else ,no one is in your shoes but you,and honestly ,many dr don't even care ,so never do anything unless you are 100% sure you really want to try.
Best wishes and blessing Adelaide ,with love Jesika .