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.