So I follow a blog called A View From The Third Floor run by Elliptical Man and he is conducting challenges for each month. January is to do something new. Now as I pondered this exciting adventure thinking what could I do, visit a new place near where I live or a new recipe, my dear friend called me and he decided to venture off to Borneo! I told him never to ask me what is new with me ever again...hahahaaaa. He actually sent me a mini film of his trip into the jungle on a small boat and some beautiful pictures of tropical flowers. I can't wait to hear if he saw any orangutans ( not that ugly orange one living in the white house who is slinging his own doo-doo everywhere-imagine the clean up!)
What did I do that is new? I changed doctors and saw a new doctor and met with him this past Wednesday! Now you might think, "Whoah, this is so exciting it is making my heart pitter patter...NOT", but it is exciting to me and I am cautiously optimistic. and hopeful. I have been dealing with pain for 30 years with no doctor truly believing in my pain and condition. Over the years the pain has become worse and it is in every single joint, even my jaw. There is not one day that I don't have this and I know many of you truly know what that feels like. One Doctor did inform me that I have Ehlers-Danlos and from many visits to doctors who told me I'm just depressed to others who just say I shouldn't be in this much pain, let's just say...after 30 years one gets a little discouraged. My last Doctor, who I have been with for close to 30 yrs was angry with me for having to ask for tylenol 3 every 28 days because he would only give me 40 pills and then said "You've gained weight" and made a noise like I expanded into a giant water balloon, is now history. He used to be good otherwise I would not have stayed with him, but he always had an issue with my being in pain and giving out medication plus I think he is losing his marbles.
So this new doctor told me most doctors don't like dealing with patients who have pain because it can't be diagnosed properly. He will be sending me to a doctor in Toronto who specializes with Ehlers-Danlos and he also understood that I am not an addict! There was one day, about 3 years ago when I was in Home Depot and I had hardly 0 pain...0!!! I felt so happy and had no desire for a tylenol 3. I took in that moment because I knew it would change but this was such a happy memory...it really was and it confirmed, to me, that I am not addicted to tylenol but am dependant on it which is a difference. If you ever have had a toothache, think of that ache in every joint and that is about what I have never mind dislocating a joint here and there.
So, to make a long story..long, he has given me 100 tylenol to last for 2 weeks plus I am on a new drug, Gabapentin. It is an anti seizure drug but often given to people with chronic pain. Now it says weight gain, which I am not happy about but this is a trial. My new doctor said one will see if this works and what the Dr will say in Toronto plus he is sending me to a Dr in Hamilton/Dundas area who specifically deals with people in pain and welcomes these people with chronic pain. My new Doctor said he IS listening to me and feels I probably do have Ehlers-Danlos because he has a good friend who also has it as well as her daughter. (E-D can't be found in a blood test or DNA test)
This past month, with the weather being damp and not as cold as it should have been has done a number on me which is why you have not seen any postings of my cards...I just can't make any but I am hoping soon I will feel better....maybe this weekend. I am crossing my fingers that I am being heard and that my pain will be managed better...and I hope I don't turn into Blimp O Birgie.