So it had been recently brought to my attention that many of you don’t know what exactly is wrong with me and would like to know. If you are one of the people who wants to know read on…
If not feel free to skip this one. There is a lot of personal information in here that may make you uncomfortable. I am trying to live life as an open book, but that doesn’t mean you have to turn the pages. My last doctor demanded that I stop internalizing my pain and issues because it was just making things worse so I’m trying to talk about it and be open so I can get the help I need and find answers.
I have had a slew of little things that add up to a lot since I was young. Stomach issues, headaches, issues with reproductive health, low blood pressure, anemia, ear infections sinus infections strep throat, easily sprained ankles, chronic illnesses that took way too long to get over and would return if I went out and about before fully healing, and back issues and joint issues that most have just chalked up to how active I was as a youth (martial arts horseback ridding, gymnastics, ballet, tap, belly dancing, volunteering at the Zoo and youth shelters etc…
I’ve had CT MRI’s cameras shoved up and in most of my orifices and so much blood drawn it would make a vampire obese.
So far medical science is kind of stumped by me. So far I defiantly have a hiatal hernia(a part of my stomach is shoved up into my esophagus causing eating to be hard and sometimes very painful) Diverticulitis, and a mild case of Chrones Disease. I did have Celiac but I’m in remission witch is a freaking miracle only 2% of people get celiac and maybe 1% of that 2% will go into remission, Thankfull for small blessings(and to be 100% honest medical marijuana, my GI doctor is pretty sure that is what got me to remission). Non GI issues are: a couple herniated disks, sciatica, both rotator cuffs are destroyed, soft tissue degeneration in almost all my joints , which also pop and dislocate at the drop of a hat. Polycystic ovaries (almost every time I ovulate I get excruciating cysts tha t can either pop on their own which is kind of like what it would feel like if a tiny grenade were to explode inside your abdomen) Sometimes I get a month off sometimes I have multiple on both sides. I also have endometriosis (the tissue that sloughs and renews itself in my uterus is damaged and causes scaring in my uterus) Doctors have had me on multiple birth controls for since I was probably 12 or 11 to try to make it possible to have children which I did but now I am resistant to synthetic hormones so most BC’s don’t work and IUD’s cause sever hemorrhaging and my uterus is prolapsing (collapsing and trying to turn itself inside out)…so basically the only time my reproductive system isn’t completely screwing me over with pain is maybe a 2-3 day period between ovulation and when PMDD kicks in which I also have.
As well as at my last eye appointment my doctor noticed pretty sever macular degeneration in just a year which is a warning sign of many different things and means I need to get tested for MS at some point soon.
When tested for Lupus and Fibro the results come back as inconclusive. Which means I have some of the markers and most of the symptoms so it is not a definitive diagnosis but still a possibility.
My big thing that actually could explain all of the above is EDS. My old doctor, after I brought it up and she did some research, is pretty sure I have EDS. I don’t have a formal diagnosis because I’m waiting for our permanent (fingers crossed) insurance to kick in because if this is the case (which my last doctor and I are pretty sure is the case) there are going to be some very hard things ahead.
EDS is complicated it was discovered not too long ago by two doctors named Ehlers & Danlos, it is named after them: EDS = Ehlers Danlos Syndrome. The quick and dirty explanation is that on a cellular level the glue that holds everything together in me is defective and will only deteriorate more as time goes by. I’m pretty literally falling apart. There are three types of EDS you can have one or many or a combination. I check all the boxes on two types and have some of the third.
What does this mean for me and how I interact with life? Well, I am always in pain. Every second of every day. There are varying degrees of this pain but it is constant. I have learned to live with a base line of pain because I have had no other choice but to do so.
However more and more it builds up and I am less able to push through the pain…and in all reality I should not be pushing through the pain because this just speeds the process. However I am at a point where I understand time is precious and I want and need to do all the things I can safely do.
Some of the things I have to look forward to are the rest of my organs trying to prolapse so having to remove all unnecessary organs before it is impossible due to my tissues being defective and not healing well and the risk of bleeding out from anemia. Being confined to a wheel chair in possibly the next year or two. There are very few treatments for this it is possible that Chemo may come in to pla there are some cases that have had good results but it is still too early to understand how effective it is in the long run and if there are any lasting effects… but I have to get into a specialist first.
There are some forms of therapy that can help but mostly it’s all about trying to maintain mobility as long as possible and trying to keep the pain at manageable levels and it is very much on a case to case basis. There is a very good chance that this could kill me in the long run
So life is kind of hard right now. I still fight for normalcy in my life and try to maintain a bright outlook and attitude for my children and my own sanity. I fight for good in this world because what I really want out of life…is to leave the world a better place than it was during my time here.
It’s a lot to take in and a lot to deal with so I usually when people ask how I’m doing even if try to be honest it’s still just the cliff notes version. It’s hard to talk about and articulate so I tried to write it down and there is still a bit missing but this is probably the most complete answer to “What is wrong with you anyways” that I can give.