Latest Medical Update - Hospitalization

I am so happy to be home.  I went to the ER on Saturday morning because the pain in my abdomen had changed.  I only put up with a months worth of horrific nausea, vomiting, constipation, and pain before breaking down and going in.
I had a horrible experience in the ER and then the hospital proper.  They ended up overdosing me on medications which led to me becoming basically unresponsive with a severely low heart rate.  This led to them having to give me narcan which gained me an admission to the hospital.  I was there from about 10 am Saturday until about 8 pm Tuesday when I had reached my breaking point.  I received great nursing care; however, the lack of care and desire to help from the doctors was just too much to bear.  It felt like they did not know about Ehlers-Danlos Syndrome and were not willing to listen to what I do know about my illness.  They did not want to consider anything other than common reasons for my horrific abdominal pain.  Besides they were not helping me feel any better so why should I continue to stay.  They were monitoring my heart rate and besides that the only thing that was really being accomplished was hydration via IV.  Because of the earlier issue in the ER they would only give me tylenol for the excruciating pain I was in.  I felt like I had to fight to get the tests done that I felt were necessary.  I had a CT scan, chest x-ray, enema, upper endoscopy, colonoscopy, echo cardiogram, and a multitude of blood work.  I don't feel like I was given the whole story as to the results of some of the tests and blood work.  The only diagnosis given during my stay was gastritis.  I actually had a breakdown which resulted in the echo cardiogram and some vital information, yet still no treatment plan and no referrals...
We still don't really know what is wrong or how to fix it, but I am back at home finally and feeling worse than when I left to go to the ER.

Lack of Posts

I just can't seem to get into the swing of this blog anymore.  My focus has switched to my cooking blog at the Dairy Free Diva.  I hope that you will come visit me there if you haven't already.

Flu, Crud or Something

Whatever it is it has struck our family... Miserable stuff with fever, chills, headache, body aches, and extreme gastrointestinal issues (to put it nicely). I have been fighting it for about a week or so now.  My husband succumbed to it today.  My FIL started with symptoms on Friday while driving to California with my SIL and her two kids.  FIL ended up in the hospital due to complications on Saturday and was kept overnight!  The SIL and two kids have been fighting it since Friday as well.  I can't begin to imagine how miserable that trip was for them all :(

We have heard that this can last for 3 weeks.  I really hope that isn't true!  I can't imagine flying feeling like this :(

Winter Weather

It seems that Winter is here to stay at least here in my little corner of the world.  It has snowed more days than not so far this month.  At least it seems that way...

Although the snow is beautiful along with the cold weather comes increasing pain and problems for me.  I have an appointment with a new Rheumatologist PA the first part of December.  I am hopefully but trying not to get my hopes up concerning what she can do to help me.

I also have my travel details for going home for the holidays.  I will be flying to Florida to be with my parents for Christmas and New Years.  Since I will be there for 3 weeks, I am trying to make plans to see friends also.  Mostly though I am going to be trying to keep myself busy which shouldn't be hard with the HUGE freelance project I am working on.  I have mixed feelings about going home.  I am excited to go; however, I am sad that my husband will not be able to go with me.  This will be the first Christmas that we will have spent apart since we met. 

First Snow

Today we had the first snow of the season... I can not believe that it is already that time of year!!  The snow has been falling all day and through the night with very crazy winds.  It seems like it went from the lovely Fall weather that we had been having to the dreary cold and miserableness of Winter overnight here.  I keep hoping that this really is not the start of Winter here in earnest, but I think that it most likely is indeed.  My garden is most likely done for too :(  I was hoping that the carrots, beets, and onions might have made something... I guess once the snow melts - if the snow melts in the next few days I will go and check.  I just hope that the ground isn't frozen solid!  If it is then there is no hope of me pulling anything up to check!

Just Not Feeling Well

I can't seem to put my finger on what is wrong; however, I have not been feeling well at all for the last few weeks.  I know that it is most likely something related to my Ehlers-Danlos Syndrome but what exactly is going on eludes me.  I have been experiencing a big increase in the horrible muscle and joint aches along with the bouts of inability to think straight and extreme dizziness.  I also am having an increase in GI issues and the literally mind numbing headaches.  I don't think any of it is food related as I have been hyper vigilant as always with ensuring that I don't have any of my off limits foods.  The one thing that I am sure about is that I am very very tired of being unwell.  I want off this merry go round and can't seem to find a successful way to achieve that desire.

In other news, I have fired my Rheumatologist only she doesn't know it yet.  They called a month of so to let me know that she was unable to keep my last appointment and I just have not rescheduled it.  I honestly do not have any plans to reschedule... I finally was able to obtain a copy of a fairly serious and expensive lab test that she had done almost a year ago.  It is called an ANA panel if any of you are familiar with the blood test.  She had told me that everything was fine on the results.  She lied.  Well when I finally got a copy I found out that it was anything but fine.  I currently am trying to find a doctor that really can interpret the results and what they mean.  However, even a layperson knows that it isn't good when things read positive and are listed in the abnormal range.  Based on my research I am trying very hard not to jump to any conclusions as there are a list of things that are possible with the results I have.  Lets all just hope that it is the EDS showing up and not something more in addition which appears to be highly probable. 

Just in case someone actually knows how to interpret the test results... The test was a ANA 12 Plus Profile.
Here are my out of tolerance numbers (There is a lot more data on the results).
Anti-Nuclear AB = Abnormal - Positive & Normal Range - Negative
ANA Titer = Abnormal - 1:40
ANA Pattern = Speckled
ANA Titer = Abnormal - 1:40
ANA Pattern = Nucleolar
Complement C3 = 206

The Vet Visit Adventure

I took the dogs to the vet yesterday.  Wow, I had forgotten how difficult taking them in to see the vet could be!!  I definitely could not have handled both dogs without help.  I was glad to have my FIL along for a helping hand since DH had to work. 

Both dogs got good reports overall, thankfully!!  Rebel was due for 2 shots and a nail clipping plus his well dog check.  The good news with him is that the little growth on his lower eye lid isn't especially dangerous and is typically totally benign so we didn't even need to biopsy it!  We will just need to watch to make sure it does not grow or begin to bother him.  Also, Rebel had lost about 16 lbs since his last visit down to 80 pounds and almost a healthy weight for him.  Suzy had also lost a little weight which was good for her as well.  I guess all that cooking for them has helped with their weight as well as the seizure prevention.  Suzy was just due for 1 shot and a nail clipping plus her well dog check.  The good news with her is that her occasional limp should not require surgery unless it progresses to an all the time thing.  The vet thinks that it is a possible ACL injury which isn't great news though. 

Because Suzy was badly abused before we adopted her she went first with Rebel there to help keep her calm.  I muzzled her for the nail clipping more for her safety than anything.  She was so good for it and didn't even paw at the muzzle!  I was so proud of her!

I had my FIL take Suzy out while the vet took care of Rebel as she is very protective of him.  Rebel was a little baby about the nail clipping as expected and whined and acted like he was being killed when he really wasn't at all.  So it was a good decision to have removed Suzy from the equation.