- NASH- non-alcoholic stetheo hepatitis, a fancy phrase for non-alcohol related fatty liver disease (will hit on this one later)
- Hashimotos Thyroiditis
- Bells Palsy
- Restrictive Esophagitis
- Erosive Duodentis
- Sinus Tachycardia (racing heart, feels like hard thumping)
- Ventricular Tachycardia (racing heart that feels like a million butterfly wings beating and hard to catch your breath)
- Left Ventricular Hypercardia (luckily it is mild)
- Asthma
- Partially collapsed right lung
- neuropathy in both arms
- Abdominal wall neuropathy
- Ocular Migraines (had the full blown version of Migraines from the age of 8 until I was 28 but now I just get the painless light shows that leave me blind for about an hour at a time)
- Free fluid in abdomen and pelvis
- Diverticulosis
- Tinnitis
- Joint hypermobility Syndrome
- Sjogrens Syndrome
- Gastroparesis
- CIP
- 6.7 cm left ovarian septated cyst
- Extreme Labile Hypertension
- Severe heat intolerance
The list just goes on and on and on....
Almost all of these things were found in testing when looking for other things and many times I was not even notified by the Doctors that they were diagnosed and only discovered it when I had to get a copy of my medical records to take to one local specialist or another for a consultation and I read my records.
I have had Doctors tell me in the past that they found nothing (when I read the medical files the tests showed that something was found as an 'incidental' but it was never mentioned) or they would say "that is just freaky" or "I don't know what to do about that" and nothing would ever be done.
I was sent to a Kidney Specialist at one time that went over my symptoms with me (the labile blood pressure and tachycardias) and was told on that first consultation after 30 minutes that there were only three things that could cause my symptoms... Pheochromocytoma (been tested for that so many times the sight of a 24 hour urine catch bottle gives me hives) which I do not have, being paralized from the neck down (which I am not) or being a binge drinking alcoholic. Well, since it was not the tumor or being paralized he said "you have a drinking problem and I cannot help you until you admit it and stop drinking". I was LIVID because one of the things that I cannot tollerate is alcohol in any form... it triggers the tachycardia and makes me flush purple within a minute of even a sip. I do not drink and definately am not a binge drinker... I did have a time in my 20's that I had a brief issue with alcohol and I am honest with that but at that time I had not had even a sip of a wine cooler in 6 years. To add insult to injury my best friend growing up had just died of Liver failure due to her alcoholism a few weeks before that.
I went back to my Primary Care Physician at that time (changed Dr's soon after that) and told him that I would NEVER go to see that so called 'specialist' again and was told 'well, that was my last option for trying to find out what is going on... I don't know what else to do'.
There have been many times that I have simply stopped going to Doctors at all... what was the point other than spending money I didn't have to be told "we can't find anything" or "you are stressed".
It was only after endless badgering my my husband that I agreed to see one last specialist, the one that is referreing me to Hershey. I went in expecting the 'same old same old' carrying all my medical records and printed pages of my symptoms and allergies. I sat there as he read them and waited to be told I was just nuts and go home. Instead he said "I think you have delayed gastric emptying and I want to do a test". Sure... one more test... whatever...
I went in for that test on my 41st birthday... a third of a cup of oatmeal with radioactive tracer (am allergic to eggs), lay on a table for 90 minutes... and go home.
I did not hear anything from the Doctor so expected nothing when I went in for the follow-up and was shocked by what I heard.
"Didn't you get my letter?"
It seems that the test was positive, I had a marked delay in gastric emptying (shocked me because I had been having a 'good week' bellywise when the test was done).
There were things that could be done, he told me, but my options were extremely limited because I could no longer keep any oral medications down (I can swallow pills, but they will not stay down because of the damage to my stomach from ulcers from all those pills over the years just sitting there eroding my stomach lining) and all the liquid options and disolving options have artificial sweeteners in them so Diabetic patients can use them, but artificial sweeteners are full blown migraine triggers for me so I could not take them.
The only reason that he thought to even test me was because I had started to lose weight with no change to my eating habits... for over 1o years I had gained weight steadily on around 500 calories a day, something no Doctor ever believed. It was not until after I started losing weight that someone took notice... it did not matter that for two years I was unable to take any medications for my blood pressure or heart rate or thyroid issues.
I am even more limited because I cannot have general anesthesia (in 1998 during my first of 19 surgeries over the years on my left ankle there was an issue during surgery... in the middle of the operation my blood pressure rose quickly and when they treated it my blood pressure fell and was not able to be registered at all. They gave me a fluid overload to try to get a blood pressure back which enlarged my heart 4x normal size and filled my lungs with fluid and I was in ICU for a week on a ventilator with my foot being held together by cellophane wrap as they waited to see if I would live or die. There is an element in general anesthesia that I am allergic to it seems. All ankle surgeries after that were done under spinal anesthesia or local... lucky me I got to feel every cut and stitch of the ones under local) so a Gastric Pacemaker is not an option for me, I am allergic to adhiesives so a J-Tube or IV nutrition is not an option for me... that leaves what?
I have a left ankle that is awaiting amputation, a right knee that needs to be replaced, a hernia that needs repair and a few other operations that are a bit more urgent but no surgeon will touch me until I am able to take my blood pressure and heart rate medication. Add to this that I am allergic to all narcotic pain relievers and the Pain Management Clinic at UVA has run out of options for me years ago so there is nothing I can take after any surgery for pain management and you can start to get an idea of where I am.
I am afraid to even be hopeful when it comes to my appointment on this coming tuesday... afraid that I will either get the brush off "it does not look like an issue" or even worse... "there is nothing we can do".
My CIP attacks are coming on more and more frequently... I have been having them weekly and sometimes a couple of them a week. They come on with no warning and leave me trembling and weak and in unbearable abdominal pain. I am living in a chronic state of dehydration... I have lost the ability to throw up when ill now unless I manually do it for relief... I can feel it in my throat but it is like there is no strength to get it all the way out. Some nights I cannot even lay down because I go into V-tach when I lay down which makes it hard to breath and will wake gasping for breath if I do fall asleep or the pain is just too strong for me to sleep (between the ankle popping out of joint, the arthritis in the knee, the abdominal pain and chest pains I am lucky to be a 7 out of 10 on a good day).
If they tell me 'there is nothing we can do' I don't know what I will do... I just cannot keep going on like this but somehow I will find the strength to keep going on because I have a mission and that is to raise Gastroparesis and Gastric Motility Disorder Awareness! It may very well be too late for me but I am going to do everything I can do to see that people are made aware of these conditions so that they can be diagnosed early and get the treatment they need and deserve. If I get my wish then no one will ever have to go through what I have in the future.
I created the Gastroparesis and CIP wishing star for that reason and when I am up to it I am on Twitter and Facebook spreading awareness... I am writing to my local news and thanking those who write and publish articles in newspapers and magazines about the condition as well as working on my websites (gastroparesis-awareness.com, .net. .info and .org) and anything else I can think of to get the word out there.
