Friday, July 1, 2011

We might have an answer

I called this morning and was able to make an appointment with my Internist on Tuesday, with the Hemotologist on Wednesday and I have a New Horizons appointment on Thursday. Its a lot of doctors appointments but hopefully that means lots of answers as well. I am running out of most of my prescriptions but am just going to get one weeks worth until I find out if I can get more prescription help through New Horizons (which is a very good possibility). My Internist is also adding a new nausea medication which I can pick up from the pharmacy tomorrow morning, so I am keeping my fingers crossed it will help.
The more and more I research this disorder (which is spelled Porphyria) the more it sounds like the condition that I have. I am really hoping that this is the answer. However, there is no cure for this disorder just management but I will take what I can get right now.
It has been a rough few days and I have a feeling the next couple are not going to be easy but my mom is coming up to be with me and give me some emotional support that I need right now.
And this weekend is a weekend to be thankful that we live in a country where I have the freedom to see the drs I need to and not be shunned for being sick. We have family coming in to visit and I am going to try and enjoy each day knowing I am going to see a specialist next week. The Mayo Clinic is not an option anymore but maybe this is God saying my answers are going to be found here.
I just wanted to keep everyone updated and when I know more about this disorder and what the next steps are going to be I will let you all know. I am just praying that I finally have my answer.

Wednesday, June 29, 2011

If one thing goes right another goes wrong

So Mayo clinic just called and they have approved the charity.....but wait for an outstanding balance I have for $200 and they will only do it once. So you know what that means there is no money for me to go as a patient if my doctor refers me.....I give up I swear!

Next week

I had a bit of a break down yesterday, I was so tired of hearing next week. We might know something then, keep trying to call back, just try again later. I was getting to impression that no one and I mean no one was taking me seriously. I felt like because I am just throwing up you know everyone can do that for a little longer. I do not think they realized I have been throwing up none stop for 3 months!! 3 months.
But I woke up this morning with a call from my internist. She said that there were elevated porthyria cells in the urine and that she thinks this is the answer. It is where your blood production does not work right. I need to see a hematologist about this because she can not treat it herself. I explained how desperate I am right now and how miserable so she is going to try and get me into to see them asap or to be hospitalized again.
Right now I am still going to call the Mayo in case this is not the answer I do not want to have to start over again.
I am excited and it seems to cover a lot of my symptoms but I can't handle another let down. So everyone please pray and keep your fingers crossed that this is the answer they have been looking for.

Friday, June 24, 2011


I really need to let this all out...I know I have not been the best friend in the world the past couple of months, I feel like my health always monopolizes the conversation or by the end of the day I truly don't have enough energy to do anything but stare blankly at the television screen. I want everyone to know that I am still here and still do care it has just been a really hard time for me. I truly care for all of my friends and I am going to make an earnest effort to put forth more towards my friendships because I need all of my friends at this point in time. I honestly appreciate all of the well wishes and prayers that are being sent my way even if I don't say it enough. I just ask that everyone please be patient with me I am trying to deal with this situation the best that I can but unfortunately it does not come with an instruction manual.

Thursday, June 23, 2011


So my appointment wasn't quite what I wanted but it was a positive appointment. I was reaffirmed that I really do like my cardiologist he knows me as a patient without having to even look at my chart. My EKG was good my heart rate better than before but my blood pressure is still on the floor. He does not think it is a good idea to do anything right now with my heart because we can not be positive what medications are actually being absorbed and what is being thrown up. He says he doesn't want to do anything permanent till they can figure out what else is going on. He upped my blood pressure meds to every 4 hours and told me that if I am having a high heart rate day I can take an extra heart pill but I have to be very very careful with it. He thinks that until they figure out my vomiting and why I have the adrenal disorder this is all he can do. He says symbolically he is using everything in the tool box there is nothing else to try. He said I might have to get a vroom-vroom cart and wear a helmet to survive my day lol.
As much as I did not want to hear that he didn't have anything new to add he did remind me that there has to be someone out there that can help and doing something permanent to my heart is not a way out. He did down grade the appoitnment so it only cost me $100 instead of $350. So right now I am trying to find the positive in everything because no end is in sight.
I am going to call disability tomorrow but the reason I was denied (what I was scared was going to happen) is that I have no worked enough to get any benefits. It will never hurt to call but life is life. I have a doctors appointment with new horizons on the 7th of July, it is based on income, so maybe that will help with some of the prescription costs. I will continue to keep everyone updated as I know more...just keep telling myself positive thinking can go a long way.

Wednesday, June 22, 2011


Monday was a really rough day with vomiting...I had to take every dose of my medications multiple times to keep them down. I called the Internist's office twice yesterday and when they finally called me back at 5:30 they informed me that they used to wrong collection cup for my urine and sample and I needed to come back in and do another one. When I asked when they planned to call and tell me this if I hadn't called myself the nurse casually said she would have told me by Friday. Dr. Horton also does not want to talk to me until she has all my results (including this urine sample). So I went back to the doctors today to give yet another sample and I now have to wait 3-4 business days and call back. On a better note I go to see my cardiac specialist tomorrow and I am hoping he can help me with my blood pressure. I have fallen 3 times this week and I take everything so slow I don't know what else to do. The appointment alone is going to cost me a minimum of $350 but it is a necessity.
My days a run by deciding what I want to throw up and then when I need to be completely flat laying down to try and keep my medication down after I take them. Everyone keeps telling me to take it one day at a time but I just want to know whats wrong. Why is House a fictional character?? I am willing to almost die the first couple times he thinks he right if he could ultimately figure it out :)
I will update again tomorrow after my appointment fingers crossed everyone.

Saturday, June 18, 2011

Rough week

This past week has been really rough physically and emotionally. I got my first denial from disability and plan on starting on the appeals process on Monday. I got a call from my Dr that asked where I would like to be referred, I think this means she is not sure where to go next. And on top of all of that my blood pressure has been bottoming out all week. That means that today I am sticking to the couch, with some ginger ale and the lifetime movie marathon.
As the weeks go by I am finding it harder and harder to stay positive and to see the light at the end of the tunnel. During these past few months I have caught myself wishing time away but I don't know what I am wishing towards. Food has lost all satisfaction because I know I just going to throw it back up. I am now throwing up before I finish eating in the first place. The only activity I can do outside of the house is going to the store with my aunt and even then I have to use a motorized cart and I throw up into a bowl on my lap the whole time. I just don't know where to turn.
I have a doctors appointment with my cardiac specialist on Thursday next week so I am hoping he has a solution for my blood pressure, I am maxed out on all medications as of right now. The appointment is going to cost a fortune but I really like and respect him and his opinion.
Today is my mental holiday and maybe just what I need to keep me going. So, as of right now I am going to keep my fingers crossed that the cardiac specialist will have some insight, that my Internist will call with my test results from last Monday, and that we hear positive news from the Charity program at the Mayo Clinic in Jacksonville.