Hi Everyone, it's been so long since I have posted on here and I'm sorry I haven't been around and out of touch. Life has been one heck of a roller coaster ride for me. Some of you may remember me but anyways, I have full body RSD and now seems to be attacking my internal organs as well. I also have osteopenia with a great deal of bone loss on my hips. It just never ends. Everytime I go to the Doctor, it's something else that's wrong with me. Recently I also had a fractured tooth (back moler) and it had to be extracted. I was sent by my Doctor to an oral surgeon down at Hahnemann Hospital. Instructions were to make this "AS PAINLESS AS POSSIBLE" ummmmm...yea sure..right...NOT! Well I was told it would take about 10 minutes and not be so difficult. Instead it took an HOUR! And it was extremely painful. Nothing went right. The tooth kept breaking including the roots. He kept having to take xrays to find the root pieces to get them out. I also had to sign a paper stating that this could very likely cause RSD in my jaw on the left side. I already have RSD on my right side but this is NOT what I need! I've been scared since. It put me into a huge flare up. I haven't been this bad since my ketamine treatments. I'm back to having the burning pain, can't stand being touched, can't stand opening the refrigerator, touching anything cold, drinking anything cold, clothing is awful, I feel dizzy, uncontrollable body temps, pain pain and more pain! This cold weather here in PA sure isn't helping either!

A little about the ketamine treatments I went through. i did the 10 day outpatient back in October of last year. I was at the full dose by the 3rd day. I went back for all the required boosters and they actually had me come back for some extra days. I was doing pretty well but it just wasn't holding. The weather had turned cold and I went down hill real fast. The Dr's felt I was a severe case and needed to go inpatient. I was on top of the list and went into the ICU for the 5 day 24 hour infusion. That was a wild ride..lol! I was having a blast those 5 days. I did great and all was good except my veins were just so damaged. The vein in my left arm blew and it was the main one..it got rock hard and they said it was now unusable and my right arm is my bad arm so I was up a creek without a paddle. I had to go back for boosters. Getting an IV in was becoming extremely difficult. The ketamine did seem to work and I was feeling great for quite a while. The summer months got really hot and I had some tough days but all in all...things were good. I had boosters all the way up until June. Insurance will no longer pay for it and I can't afford it so it had to stop. I was also miserable in my marriage so I decided to get out. I asked my family for help, found a nice apartment and moved out in a week! I have been so happy ever since. So has my son. We have both been very happy and less stressed. Stress is a big factor with RSD and I needed to get rid of it. Now the weather got COLD and I have been struggling. The tooth extraction sure didn't help either. The other day, I just layed on the floor and cried. I wanted to give up. Some days I am so ready to throw in the towel. I hate this awful disease! It has destroyed my life. I am now a single mom, unemployed, trying to get SSI and I won't have health insurance as of January. I'm scared to death. I have days where I just can't move. I have lost friends because they don't understand. I have a boyfriend who does understand but I know he's worried. He says he loves me but I'm just worried that this is too much for him. It's too much for most people. I can't even handle it most days. I have been fighting so damn hard. I try to keep a smile on my face and hide the pain. Lately, it hasn't been working. I'm now starting to get very moody and snapping at everything. I'm also worried about my financial status and insurance. Some people I know just don't get it. I just took on a job babysitting a 9 week old baby at my place. I'm home most of the time now anyways. He's adorable and I hope I can handle this. I need some income. I have to pay bills somehow.

I have been reading through many of your posts. I feel the same as many of you. Also, layering clothing is my thing every day. I can't wear long sleeves or sweaters. I have a closet full of tanks, t shirts to go over and hoodies, jackets. I'm hot one minute and cold the next. Don't know if I'm coming or going. I hate it. yesterday we went to church and I was having a bad flare and was sweating so bad. I couldn't cool down. It was so gross. It took a while then I was freezing cold. NUTS!

I hope everyone is having a great season so far. Me..I'm not really in the mood. I've been trying. Not working

Happy Holidays to All!!!

I'm so sorry you are having a rough time. I'm so glad you have your son. Is there anyway you can move to a part of the country where the weather favors you better? I guess you are near your family where you are so I hope they are giving you lots of support. I try to email or Facebook friends because I don't really feel like going out and I can't walk much anyways. That way I feel connected still and not so isolated. That's exciting you have a boyfriend!!!!

Dear Momz

Im glad you posted today. I learned alot. I have been sick for 5 years and just got diagnosed with internal RSD 6 months ago. I havent tried Ketermine infusion yet. I took it orally many years ago and it didnt help at all and i dd hallucinate, not so good. I feel your pain and mental anguish. If i could only wave a magic wand over everyone at this website and make us all better. we didnt do anything to deserve what has happened to our bodies. I have lost all my friends too. My hubby of 28 years is my caretaker and i would be in a home if he wasnt here to care for me. Its scary. I hope and pray that your life gets easier. I can tell you are a sweet lady and how wonderful you have found a man who understands you and your pain, he must be a keeper. Dont push him away, worrying about whether or not he will stay. Just live for today, one day at a time. find small hobbies that make you happy. I have been crocheting like crazy lately, it has been a good escape. I also make jewelry for gifts for friends and family.
Be strong, and post often, you never know when your story can help someone, like you helped me today.
Hugs
Lori