Tuesday, January 27, 2009


Okay, so I haven't been able to continue with my updates recently because I was actually admitted to a hospital somewhat out-of-my-way unexpectedly and have been there for over a week.
I am glad to be out now, and hope to update again soon.

Thursday, January 15, 2009


So continuing on...
When this all began, I went to one ER and was told that it was in my head, given an ativan and sent on my way. Two days later, I was taken to a different ER, more blood was taken and oxygen was given but I was told that I was not going to die that very night, so I had to go.
I was seen at a hematologist's office, but was seen only by a nurse practitioner, never actually seen by the hematologist. Many blood tests were done.
Many outside tests were ordered:
Stress echo- I was told this was normal, even though I felt like I was going to die.
Abdominal CT- normal
Bilateral leg ultrasound- normal
Abdominal MRI- a hepatic adenoma was found- a (at that time) benign) tumor that was presumably caused by LoEstrin24. This was told to me on July 28th, 2008 and I was told to come off of the pill immediately and that the MRI would be repeated after a brief time off of the hormones. As of this date, I can't get anyone to order the repeat of the MRI.
Pelvic Ultrasound- normal
The nurse practitioner put me on Lisinopril.

I have seen my gyn and been cleared of anything on his end.
My first "new" Primary Care Physician told me that he would not be my doctor because I have too many previous diagnosis. This was before I even swelled up. I got a new PCP and he ran a bunch of blood tests and sent me to a kidney specialist.
I had a terrible cough that would not go away, and the PCP determined (after months of antibiotics) that it was the Lisinopril causing an upper respiratory infection. I was taken off of it and eventually, the cough got a bit better. I still have left-over effects from it.

The kidney specialist first said (without doing ANYTHING, I kid you not) that there is nothing wrong and sent me home. Then she called and said that there was protein in a previous urine (not done in her office, because again, she did NOTHING) so I needed to come back to do a 24 hour urine. I did that, and she decided that being on Lasix and Triemterene was dehydrating me, so I needed to come off of it. She also said that my potassium was low.

My PCP put me back on the Triemterene, but on a lower level- Maxzide, which I am on now. I was off and on the Lasix a couple of times too. Nothing has actually shown any results, diuretic-wise though.

I have gotten weaker and weaker and my mobility has gotten severey impaired. I still have no answers. I will write more later. I am too tired.

Tuesday, January 13, 2009


I guess I should start with the basics.
I am looking for answers in a world where I can not seem to find any.
It seems that I have too many medical issues at once to get anyone to take me seriously.
I am a 29 year old female.
I h ave Type I (juvenile onset) diabetes and have been insulin dependent since childhood.
The word "brittle" has been used to describe me, and I have struggled with controlling my sugars, but I do the best that I can. My last GH A1c was 10.2, which although still high, was an improvement from my "normal" range of 13-14.
I was improving.
I have fibromyalgia, which was diagnosed in 1999. It has been treated only with a very small dose of Topamax for the past three or four years.
I have asthma, which tends to be triggered by extreme heat or cold, humidity, and wind.
I have hypothyroidism.
My cholesterol is apparently borderline high. I was on Lipitor for a while several years ago, but got debilitating back pain from it and was taken off of it.
I currently take:
Lantus (insulin)
Humalog 75/25 (insulin)
Albuterol as needed
Ranitidine as needed

In early May, I started swelling up for no known reason. I was walking around all day long in a size 14 jeans. I came home and was going to watch movies with my boyfriend. It was a rainy day, and we were staying in, so I changed into my pajamas. I went to put my feet up on his lap, and we both realized very quickly that something was wrong. I was swollen like a balloon.

When we went to lay down, he noted that my breathing sounded funny. He said it sounded like "pop rocks" or like "wringing out a wet sponge" and the swelling was just terrible.
I went to put my jeans back on. No luck. I tried a size larger and so forth... got to the one pair of size 18s (with a lot of stretch to them- more like a 20) that I had and just barely got them on. When we finally got to the hospital, I weighed in at 30lbs heavier than I had been that morning.
I was hyperventilating pretty badly and they didn't even give me oxygen. They took some blood, gave me an ativan, told me it was IN MY HEAD and sent us on our way.

2 days later, I was still no better, and about 20lbs heavier still. We went to a different hospital. They gave me oxygen and took more blood and said they didn't know what was wrong, but mentioned that the previous hospital had mentioned that I have lupus, which they certainly didn't tell ME... so I freaked out. Then they basically said since I wasn't going to die that very night (that is what they said, actually) then there was nothing they could do and I had to go.
No answers as to why I put on 30lbs in 3 hours and 50lbs in 2 days. Great.

I went to a hematologist who took a lot of blood, but got no answers. Got a new PCP, who sent me to a kidney specialist, who told me that my kidneys are fine. I got put on Lasix and Maxzide and then taken off of the Lasix and put back on then taken off again being told that it was dehydrating me.

I got debilitating back pain right before Christmas. Out of the clear blue sky. No one could give me answers. Finally, I had the idea to call my PHARMACY and have them run a check on all of my meds. What do you know? Zocor, which I was on for my not-all-that-high-cholesterol, is in the same family as Lipitor was. We don't know for certain that it was the culprit, but I stopped taking it, and eventually, the back pain greatly lessened. Hrmmph.

There is more, but I need to stop for now.
If you have any input at all, please feel free to e-mail me and/or comment here.
If you know who I am, please do not use my name.
I am keeping this a nameless blog.
Thank you.