I'm sorry its taken me this long to get this update out to everyone, I know you all have been wondering how my appointment went with a new doctor on Thursday the 18th.
I'm going to tell you, it was absolutely worth the 2 hour drive to this appointment. I went there thinking it was going to be like any other appointment and that I was going to be told that there was nothing they could do for me, blah blah.
This doctor specializes in Ehlers Danlos in which I have. He was VERY understanding. Paul went with me, my mom went with me and when we were in the room the doctor came in and spent 1 hour, if not a little longer, in the room talking to all of us. He understood the pain, he understood my anger, frustration and everything.
I'm to taper off the Gabapentin slowly as he wants me to stop taking it since its obviously not helping. I was told to stop the muscle relaxant and also the pill they had me on for my stomach pain that I was having. I'm doing all these things, but getting off the Gabapentin is going to take a few weeks. I was on quite a dose.
Now, what I'm about to write here I'm telling you all because its the answer, its what I was told to do, its what needs to be done. I do NOT want to be judged, I do NOT want to be called names and accused of things so if you are going to have a negative thought or are going to say something nasty, stop reading RIGHT NOW.
I do need a knee replacement. However, I have one shot at it. Once I receive a new knee I will have so many years before my ligaments give out on that knee and it goes bad. However, because of my Ehlers Danlos, I can't have more than one knee replacement. My ligaments won't handle it, my body won't handle it. I have one shot and one shot only. They are going to wait as long as possible to do so. I will eventually need a wheelchair...this will not be a simple thing.
I'm to stop physical therapy as it is only straining all these things and making them worse. I have to get fitted for a special knee brace and I'm to wear that at all times. I'm going to follow this doctors orders like I have everyone else's. To sit in a room and not feel like I'm being accused of things or feel like I'm getting absolutely no where and getting no help felt absolutely wonderful. I will continue to see this doctor and this one only.
Now, you are all probably wondering what he did for me pain wise. Again, if you are going to say negative things and call me names, STOP READING. I have been put on a regimen of HIGH pain medications. I have no reason to lie about it or hide it. I'm on oxycontin 2 times a day and I also have oxycodone to take for break through pain for the days that get REALLY bad. The oxycodone I take when needed, but have been stubborn and not taking it.
I will be on these meds for the rest of my life...there's no doubt about it, there's no cure for what I have and he explained that its only right I be comfortable throughout the rest of my life. I can't be on pain patches as I have allergies to adhesives.
I go back to see him in 3 months and it will be worth EVERY mile and EVERY penny spent. I love this doctor and I'm SUPER glad I finally got answers. My mom was absolutely ecstatic and so was my hubby.
This is where I'm going to take a moment to thank my mom and Paul for coming with me to this appointment. They didn't have to take the day off to be there, but they were both there and they are the most supportive people I've got in my life and I'm so happy for this. I've got great family, I've got a great husband and wonderful children. I can finally function daily and not be hurting all the time.
That is my update everyone. I hope you all had a good weekend and I wish everyone a happy week this week as I'm sure most of the kids go back to school. Ours start the 29th and the 1st. Thanks to all who prayed for me and have thought about me, it means a lot.
4 comments:
I am so happy that you finally got the answers you were looking for! I pray that this new med plan works for you girl. :)
I'm so happy for you and your family. It's great that you found a good Dr. Sorry you have to drive so far to get the good care. You have suffered way to long and you deserve answers. So glad you have found the right answers this time. Hope to see you guys before winter hits. The pool is awsome and so is the fishing. Love you guys
It is an incredible thing when you find real help. I have fibromyalgia, and was mistreated for years before I was lucky enough to find a rheumatologist and a physical therapist that helped me function. Sending positive thoughts!
And as far as those that may judge you for addressing your pain, they have obviously never lived with chronic pain. (((((hugs)))))
Danielle, you are so right! I am Amber's mom and have seen the hell (pardon my language on that but it is what it is) she hsa gone through for many years and the accusations she has lived through by doctors and ER staff.
I, too, not only have Ehlers Danlos (but not to the extensive degree Amber does) but fibromyalgia. Amber has been living through what so many fibromyalgia patients do -- doctors who think it's "all in your head" or don't have a clue. I have always said that for those who want to judge, let them live in my shoes for just one day when it flares up and then they can tell me the pain is not real.
I actually went to the Ehlers Danlos Foundation website to find a doctor for Amber. I was fed up after her knee surgery in March, and when my daughter said, "mom am I going to have to live with this pain the rest of my life?" it scared me. It was so worth the drive. He is a top notch doctor, and we all understand what the narcotics can do but to not be in contant pain and be able to function is huge. I'm just happy Amber finally got some answers! It's bad enough to know as a parent that I passed this on to her through my genes without having to see her in so much pain.
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