Monday, December 8, 2014

Long Time No Speak

So I apologize for not updating after my last post!! Unfortunately, a couple days after that post I was hit by a car. I have been spending the last six months recovering from that and I am finally back up on my feet again. I damaged my rotator cuff and dislodged my pacer.  I ended up healing he rotator cuff with three months of physical therapy, it didn't completely cure my shoulder, but it got me back to moving it at least!! Below is a pic of me with my amazing accessory for a while, my sling :)

My doctor didn't want to do surgery on my pacer before my shoulder was fully healed and I was deemed to not need surgery on my shoulder. It was not a pleasant time, my pacer was actually just jumping around in my chest and it is was fairly painful, I had to wear sports bras all the time just to keep my pacer in place so it wouldn't hurt as much.  Below is a x-Ray of my pacer all topsy turvey!!
Finally in August I got the all clear to have surgery!! I got surgery in September to repin my pacer back in place. Of course I wasn't expecting another surgery so soon, but I for sure could not continue living in pain with a ping pong ball in my chest.  The surgery went well, but there was a hiccup in that they forgot to turn my pacer back on until a day after surgery.  I ended up getting out of the hospital at the end of my third day there, so much less time than last time, but I only had to get my breast incision reopened to repin the pacer, since the stomach incision was for the leads only, which hopefully they won't ever have to do again :) This caused a set back in my recovery because I immediately went into a horrible flare because of the pain killer, lack of a pacer and surgery. I ended up not being able to eat for almost two weeks after surgery, basically on just a liquid diet, but luckily my doctor kicked up my pacer and it got me back on track. Of course I had to turn it back down to maintenance mode after that, but not an ideal way to spend the summer!!! I am just glad it is all fixed now and I am back at 100% again :)  I have put some photos below of my healing journey :)
Before surgery in my bair paws :)
Got a reaction from the IV tape!!
First photo post surgery, drowsy and tired (took forever to get me a room)!
Loki came to visit me :)
Brenda was the best nurse I have ever had!!!
First night home in my whale jammies :)
Booby with bandage
Booby without bandage
My first day back to work about two weeks after surgery due to the inability to eat I was out longer than expected, but booby was feeling much better!!

Friday, June 6, 2014


I decided to expand my blog and shift the focus.  My Enterra Therapy has been great, I am not 100% cured, but I would say that it is fairly well managed, I have good days and bad days, but more good than bad now :-)

In general though, my body has been falling apart from all my chronic illnesses and I want to reopen my blog in a new light looking at the struggles I face daily with my diseases both physically and emotionally.

I have Ehlers Danlos Syndrome (EDS), Fibromyalgia, Gastroparesis (full GI tract paralysis), Bile Dumping Syndrome and Dysautonomia.  The main illness being EDS, which precipitates all the other issues that I have.  I have always known in the back of my mind that I had EDS, but I never really cared to get it diagnosed because it was never the worst of my problems, I was always just focusing on my gastroparesis and dealing with my weight loss, malnutrition, dehydration and vitamin deficiencies.  Once I got that under okay control through Enterra, my EDS symptoms really reared their head.  I finally saw a rheumatologist on Monday, she confirmed that I have EDS and in addition she told me that because I have had so many painful conditions for so long that I have developed Fibromyalgia as well, which is common in EDS patients.  The hardest part about facing my fears and getting a diagnosis is getting a secondary diagnosis of another incurable chronic illness.  Chronic means for the rest of my life, I will be in pain for the rest of my life.  I am 27, my joints burn, my muscles hurt, most days I wake up and feel like I ran a marathon in my sleep.  Just add on top of the dizziness, stomach problems, heart problems, etc. it can get overwhelming.  I think my avoiding the diagnosis I was believing that it isn't true, that I will get better at some point in my life, I was holding out hope that getting my gastroparesis under control would fix everything.  I mean, I have been sick forever, but I always held out hope that I could have a "normal" life one day.  The hardest reality to face is that life will never be normal, I will most likely not die, but eventually I might not be able to enjoy life anymore, I might get so disabled that I can't function, just becoming another drain on the disability system.  Believe me, I wake up every day and push myself to do as much as possible because I will never give up, but at the same time in the back of my mind I know that my body will eventually.  I think the worst part to me about having chronic illnesses is that my brain is still there, I am still smart, my mind is completely willing and always will be, but my body isn't.  My body is giving up on my brain, I never ever ever want to not be able to work, not be able to travel, not be able to explore, but it is a possibility that I won't be able to one day.  I also admit that this makes me a person I hate, the pain makes me frustrated and makes me lash out at people around me, makes me push people away because I don't want to hurt them, which is another thing I am trying to work on.  I wouldn't say I have the biggest support system, but it is hard to maintain support systems when I am so sick I can't even go out and enjoy time with the people around me because I don't feel good.  I push myself and hang out with my friends, but 90% of the time I am in pain or sick when I am with them and I try to hide it as much as possible because I don't want to be that person, I want to push through it and I don't want my disease to control me.  I am working on seeing a geneticist and a physical therapist and a functional medicine doctor, just to get as much treatment as possible to keep going forever, but I know my body can only take so much.  I have always fought and i always will fight until the day I die to live the life I want, fight the pain every day, fight the anger that the pain gives me, fight the lashing out from pain and fight as much as possible to live a life where it isn't all about how sick I am, but about how much I can enjoy the life that I have.