My pain.

Well, time with Dad has came and went. I had such a great time! I loved it! And, like always, it was way too short.

We did a lot! And at the same time, we did not a lot too! We went to Banana's, Eme loves the popcorn game. And ate food. Went to Angelo's and painted pottery (I will pick that up Monday or Tuesday). I really am grateful for the time I get to spend with him. We are working out a trip for me to go to Rapid and visit my family there. There are a lot of details to work out, but I am trying!

And I must apologize. I am a bit scattered, and I have been holding some information. I needed to process and grasp it before I could share it.

A few weeks ago, when talking to my nurse, she asked me if we (meaning my doctor and I) talked about a transplant yet. I said I hadn't, but was too afraid to really press her for why. Then last week, when I went up on my meds, she gave me a bit of news I hadn't wanted. The average maximum for patients on Remodulin is 50 to 52 nG. I am at 42. I go up by one nanogram every other week. When we get to 50 we are going to have to start a new plan. We will try adding medicine, like Revatio (Viagra), but we were told at the beginning that it is not likely to work. That means (again, this is as far as I can gather... doctors will NOT give a timeline) I will have to go the transplant route a lot sooner than we were hoping for. In the beginning we were told that PH patients are not given priority for transplant. 2/3 of PH patients on the transplant list die before getting the transplant. I know, scary. We aren't done yet. But take a moment.

The next thing I have to think about, is can I survive a transplant? I read about this young woman who got a transplant and after 3 weeks recovering, she is doing everything that she couldn't before. MY PH is caused because of my autoimmune disease. My disease will be there even after a transplant. SO FAR my lupus has not been able to be put into remission on medication. There is nothing to suggest that it would go into remission if I got new lungs. That means I would end up here again in a fairly short period of time. I have had lupus for 5 years, and my lupus was not attacking my lungs all of those years. We figure that has just been within the last 2 years. Do you remember the SIMPLE surgery I had on my esophagus? It almost killed me. So close (and I didn't know this until tonight) that visitation was stopped a few times. Now breathe, we are almost done.

I am scared. I have been scared, but now I am telling you. I go back to Denver in November, and I completely expect to start the transplant list and prep at that time. It will be hard. I have strength, and I have love. I will do the best that I can. But we need to start thinking about the possibility that I will not make it. I hurt now. Yesterday I worked on a fountain. Grandpa cut a wine barrel for me. Then I had to nap. I lined it with plastic and filled it with a hose. I had to nap. Today I played with my pump and talked to a lady at the store. I had to nap. You, the average person, would be able to do all of that in a 2 hour time frame, and then go to work, and cook dinner, and clean house. I folded laundry the other day. 2 loads. Then I went to bed. I played 6 holes of mini golf. Then I was fighting being sick the next day, and I mean vomiting/over exhertion. And this is on medicine that is still working! I lay down, and if I take a full breath I am in pain. I can't extend my right arm because the joint is inflamed. This is what I don't talk about.

I have not been taking my medication every morning, because it makes me sick. I mean I sometimes vomit, always get a headache, always need to sleep, and sometimes can't move. I have not said how big of a miracle it is when you see me out and about, let alone when I smile. I feel strained. I feel like I have to be strong for everyone. I am related to mom, and like her I can't be weak. So I don't talk about these things. But it wouldn't be fair to you, if I didn't. You need to understand why I am calculating things like "do I make my fountain perfect, or just do what I can so that I get to see it finished?" or "do I take Ryan to Rapid City with me this trip because I may not get another chance to share that with him?" and even "how many classes do I take Spring semester so that I get to feel the sence of accomplishment of completing a degree?"

Some of you will tell me that the doctors can be wrong. And yes. BUT I KNOW MY BODY BETTER THAN ANYONE! And I know how the medicine feels. I know how I feel. And I am the one to pay for it.

But I am scared. Terrified. I am holding onto the hope that before I reach 50 nG I will reach that magic number and that I will coast for a long time. But I know that I won't.

Hi Dad!

Dad is in town again! I am so glad too! Yesterday we looked at stuff for a fountain for me. See, I have this wine barrel that I am going to turn into a fountain. I want it to be solar, and that is where the problems begin! I will have to do research to see what I can do.

Today we are going to watch Eme for a few hours, and hang out with Kissy when she gets off work. With Eme, I am going to see if we can go to Murdoch's. There is a fake horse there Eme likes, and they may have stuff for a pump!

Mom, Ryan, and I went to the fair the other day! It was nice, I liked seeing the llamas. I feel bad for the tiger. She looked indifferent. I want to go back at night and take some pictures, IF it looks cool. It is just an idea.

Really?!

Recently, I have been motivated to look into college again. I think it would be really good for me to have something I have to do. Tonight I actually started looking into it. And... I only need to finish, for sure, 3 classes and I will have an Associates of Liberal Arts! I need to go and talk to people there, because I can't do the PE requirements, and the ADA says I get special treatment.

I have to look at what I can do once I get an AAS, and what I need to do for it. But all I have left, other than the PE, are 9 credits of Social Sciences. Si I am looking at Abnormal Psych, American Gov, and US Hist (the first semester... I have the second). I would NOT take them all at once, but I could do one, maybe two, this Spring, and one in the Summer, and whatever I have left the next fall. Hmmm... not sure.

Yep. I think that is it.

Good Afternoon!

I recharged. I spent time being me and being young. It was so wonderful! Ryan and I went to Denver on Tuesday. On the way, we had a picnic in Frisco... and of course stopped many times along the way so I could use the restroom. Damn medicine! Anyways, when we got to the hotel (we stayed at the Comfort Inn Downtown) and we went up to our room, we found out that we got the king suite!! YES! I have always wanted to stay in that room! It was beautiful! We rested, as I needed a nap. Then we decided to go to dinner and then walk a bit on the 16th St Mall. We ate at Rialto's. The waitress didn't like Ryan. On the way back to the hotel we sat on one of the corners. I watched people and Ryan read one of the books he had purchased. It started to rain, and it was so beautiful!

The next day we went to the Denver Art Museum. We decided to go to the exhibit they had for the San Fransisco Sound from the '60's and '70's. It wasn't that great. But then we saw some of the other exhibits, and we really enjoyed ourselves. After that I needed something cool to drink and to just rest. For dinner we ate at The Old Spaghetti Factory. Our waiter was really cool! The food was wonderful and I had a bellini. If you haven't enjoyed one of those I highly suggest you do. We walked back to the hotel, pausing along the way just to enjoy existing.

Thursday we checked out of the hotel and went up to Fort Collins to see my brother and his girlfriend. They are doing really well! It was so good to see them! We had lunch at Lucky Joe's and met up with my friend Lee. Lee had to turn in a paper for a class and the rest of us wondered Old Town before going back to Dean's. When Lee got back we played a game of magic before heading out of town. We got back here to 1030pm.

I am just so happy!

Lots and lots

Sorry I haven't updated you all. I have been pretty busy! I am taking a break from doing my hair (I got a hair cut!) to bring you this fabulous update!!

My daughter is coming to town today! Her and her family are coming because they have a BMX race here Sunday. Oh I am so excited!!!

I am also going to Denver on Tuesday for a few days! I know we are going to the Denver Art Museum, and I want to go to the 16th St Mall, and we are going up to Fort Collins for lunch.

Dean and Abby moved to Fort Collins today. I will miss them, but it is so great that they are going!! They are leaving a bit more sad than they were planning, however. Little Dog, aka Gna, passed away Wednesday night. She was Dean's cat. We don't know why.

Wednesday was my birthday! And I had a blast!! Went to lunch at Zen Garden and had sushi. We had dinner at the house, as Momma made me enchiladas!! And mini-golf and bumper boats after that!!

I am feeling well. Nothing to report on that front. I have more energy I think.

And my Dad will be coming into town soon too!!

It's July!!

So I had a minor emergency again. I don't get my insurance back, but I have new insurance. Since my new insurance didn't start until July 1st, the pharmacy wasn't going to ship my medicine to me. After much stress and a bit of crying, I got my shipment with just one day of medicine left! I was scared. Mom was scared. Plus she had been doing the bathroom (she re-tiled it!). I think she is doing better.

I am going to go on vacation. I cleared it with my mom (she isn't happy) and my nurse (who is very happy!) . Mom is, reasonably I feel, over protective. I love her! But Sondra wanted me to remind her that the reason we are going through all of this to get me medicine is so that I can have a life. If I am not going to use and enjoy that life, there is no point in all of this. Mom didn't like that, but I wasn't told I couldn't go. I am not sure what I will be doing up there, but I am going with Ryan. Zoo, aquarium, art museum, theatre, botanical gardens... there is so much that I can do! I will only do like one thing each day I think.

Happy 4th of July!! I went to a BBQ last night at Todd's house. It was great! His family is wonderful! Well, I was reminded of why it is so great that we live in America. Yes, it has it's problems... we just need to stand up and make the changes it needs. But this elderly gentleman and Todd were having a wonderful discussion about the current and past wars, they were disagreeing, and one felt that America was great while the other feels it is messed up. That conversation could happen because of this country. It was just really nice to listen to.