Dull Day

Well, I know I haven't done a whole lot with the blog, and that is because there isn't a lot to say! I have not been doing a whole bunch the last few days. Well, I take that back. Yesterday I did a lot of calling. I am trying to get assistance for my COBRA premiums. There is a non-profit orginazation, The Caring Voice Coalition, who can help. But first I have to go after medicare and the pharmaceutical company for help. I have done that, now I have to get rejection letters from them and I can get help! I also met with my "case worker" for food stamps yesterday to get another 3 months of those. And I did something else... can't remember!

Today I don't really have anything planned. I upped my medication again this morning, so I am now at 10ng/kg/24 hours. Hopefully we get some side effects, but not too bad! My nurse gets here tonight and we are getting together tomorrow morning at 10 am.

Here is a link to the Pulmonary Hypertension Association. They have a lot of great info and stuff. I joined the association, I feel it is important. I also joined a patient contact program theough tthe company that makes my drug. We will see how that goes! My uncle asked me a few questions about the medicine. He asked if I was just going to go up or if I would go down too. I told him that we only go down if I can't handle the side effects, so like we went up too much. After I get to a treatment level with the medicine we we slow down on going up, but it is the nature of this drug that I will never be at a "stable" dose for long. He asked about the dressing, and I showed it to him. Now it is just covered by a clear plastic dressing. The stitches, there are 2, will be removed after 6 weeks. I spoke with my Dr in Denver today and I will get back in touch with him in a month to do another echo to see where my pressures are at. I believe I said before that I go back to Denver in June. This echo can be done here, so that saves time and money!!

I have to get my room set up for my medicine. Right now that means that I have to get two holes repaired in my wall. Then I have to put my bunny downstairs. I change my cassettes and dressing in the livingroom right now, and that just isn't going to work. I hate relying on other people to get things done. I feel bad. Especially with this stuff. There is an urgency to get this done. I REALLY wanted it done by the end of this week. But I feel I can't urge or push because I am not the one doing it. My nurse is comming tomorrow, and she has to approve of the environment for my mixing. Where it is now I am just not sure it will be ok.

Since I have had a lot of down time the last few days, I am working on something for Mom for Mother's Day. (Shhh! Don't tell her!) It should be fabulous! If anyone has ideas, suggestions, or wants to help let me know.

I will end it here, I think that is enough. I will let you know how things go with my nurse tomorrow and how the medication change went today.