Wind and Nothing

I think Mother Nature forgot this was Colorado, and not Wyoming. I hate the wind! But at least it is warm without being hot!

I haven't really been up to too much. Monday I spent the day with Grandpa making a gnome house to cover the outlet in the front yard. See I use it for my fountain, but when Dan waters, it gets wet! Bad combination. Well, grandpa and I took several hours to make it, and mom told me that it wasn't what she wanted. Pooh. So her job is to find me a picture, or draw me a picture so I know what she wants! AND she has to tell grandpa, not me! Hahaha!!!

I have 2 lanyards to work on for a lady mom works with. But I have to find some pink cord. It needs to be round, I think fabric, and light not neon pink. This is hard!! I will be going to Michael's next week to see what I can find. Then I have to get the hardware and tools to work with it!

The article I am writing is almost done, I think. I have a little more to do, but first I have to talk to Niki and Tori. I sent the lady who contacted me a copy to see what she thinks. I hope it is what she wants! When I am done I will post a link to the article!

I have decided on the kitten I am going to get. Did I tell you I was getting a kitten? Well, Laurie's cat had kittens 2 1/2 weeks ago, and I get to have one! (I even get pick of the litter!) There are three babies and we think 2 are girls and one a boy. The one I am getting is Black with a white face, tummy, and paws, and brown and white stripes on the body. So sweet!! She is a snuggler!! The names I have picked (because we are not 100% sure on the sex) are Eir if it is indeed a girl, and Neco if it is a boy! Eir is the Norse goddess of healing and handmaiden to Frigga, like Gna (my brother's cat was named after her). Neco is Japanese for housecat.

Oh, and I have decided to cut my hair. I want to cut it at the bottom of my ears, but mom thinks that would be too short. What do you think? I want opinions. I want to get it cut by my cousin who works at EstillosII. That is where I usually go, but the lady I go to likes to leave it a bit longer than I want.

Fabulous!

So the trip to Denver was wonderful! Seeing Xena, Kiki, Jamie, Antoinette, and James was so perfect! I am glad to be home. Abby and her dad gave me a new bed!!! (Thanks so much!!!!) Today I have spent a lot of my time re-arranging my room and getting everything where I want it. I needed a break, so I got online! Haha!

My echo yesterday showed that the pressures were only slightly elevated, and the size is in the normal range! (now you can cry, jump for joy, or do whatever it is that you need to release that pent-up anxiety!) They said they are so pleased with my progress and that they were not expecting it to be this dramatic!

It took us forever to leave the hospital yesterday. We were there until 6pm. My nurse was concerned with how far the cuff of the catheter was sticking out of my chest, and a surgeon she grabbed said it needed to be replaced. My doctor said it was fine and had an X-ray to make sure. The X-ray said it was placed in the correct spot, so there was no need to replace it. The cuff that is out is the antibacterial barrier, and I have possibly figured everything out! I remember being told that silver is used in the cuff because it is antimicrobial, but I am allergic to silver! SO!!! This means that if it is silver, my body has been pushing the cuff out, and I have been having rashes and itching and redness because of this reaction! My nurse is looking into what it is made of, and I will be doing the same.

Also, I need to research the different congenital heart defects, because the doctor suspects that is PART of the PH. If I stay stable for the next 2 to 3 years, they would plan on doing surgery to fix this. This means I am doing well enough that they are comfortable enough to do a heart surgery in a few years! (this is a good thing) It would be a minor invasive surgery, in that they do it microscopically through a series of right heart catheters.

So there was some fantastic news this week, along with some that was not good or bad. Yay!!

My bad!

I am so sorry! I thought I had blogged since that last one, but I didn't!!

So, the sinus infection isn't REALLY a sinus infection, but it is close. It is still here, and I am still trying to get rid of it. The ENT dr thought that it is being caused by my sinuses being inflamed, so we are trying to remedy that. ... we are STILL working on it.

I am in Denver. Colo Sp. to be exact! Oh am I having a blast!! I think we may be going bowling today! More on this subject to come another day.

At the Rheumatologist yesterday, we found out that I have a very aggressive form of lupus. We are still needing to find out what "agressive" means. Is it like an aggressive MS (rapidly progressing)? We also learned that less than 10% of all lupus patients have this form. AND I am headed towards Scleroderma. That doesn't really change things, just gives the direction. Now it is time to learn more about that.

I have been asked by the PHA to write an article!! (OMG!! who thought I was a writer?!?) I had posted a question, about talking to others about this disease, and answering the questions children ask without lying and in a way they understand. So yay!! If this happens, I will post a link to my article! (Still in shock!)

Tomorrow I will visit my PH doctor and get an echo. I will let you know how that goes!

Oh yeah, I have found that my "alone time" is very vital to my demeanor. I get snippy and childish if I am surrounded by people for too long, go figure.

Ugh.

I have a full fledged sinus infection. And the antibiotics I was given have now caused me to have an allergic reaction. A rash, fever, and lupus flare. I fell like shit. Everything hurts, especially my face and back.

Dad, Easter, and Snow

I had a great time with my Dad! He left this morning, and I hope his trip goes well!
We did a lot of different things. Lets see...
He didn't get in until almost midnight. Saturday we hung out with Kristine and Eme. Sunday Kissy, Eme, Dad, and I all went to Hotchkiss to visit my Aunt, Grandma, and Cousin. That was a lot of fun. Grandma seemed to be doing pretty well that day! We all took pictures, so I will post them when I get them. Monday I think we went to see Grandpa, took Easter decorations to Holly's and Grandma's graves. They are all ready for spring! Tuesday I took everyone to lunch and Dad took us all to dinner. In the afternoon Dad and I went to Bookcliff Gardens. They have the thyme I need, but no chamomile and no clove pinks! They will not have water lilies until May, so I need to see if anyone else will have them before then. After that we went to Kohl's with Aunt Jeannie and Grandma. That was fun too! Wednesday Dad hung out with Kissy, Eme, and Joe through the morning, and I think they went to the mall to the playplace. It was supposed to be a hiking day for them, but it was WAY windy and cool! After Therapy, Dad and I went shopping for an Easter basket for Eme. A ball, Barbie, bubbles, fruit chewies, and Goldfish! Then after dinner we dyed Easter Eggs to hide. Then Thursday we hid the eggs (twice!) for Eme, she got her basket, and we spent the day together. I had to leave early because I was tired, so I am not sure what they did for dinner and after!

On Wednesday mom took Dan and I to a conference-thingy for adaptive technology. Stuff that helps people do things that are difficult. Some of the stuff there was intended to help people who were severely disabled, but a lot of it was good for me! It was a bit long, my butt hurt by the end! but it was nice.

My lettuce has sprouted!!! I also have (I think!) a lemon tree sprouted!! I say I think, because I can't remember where I put it, and where I put the gourd I planted!! They are inside, and I will transplant them when it is time. Next week? I can't remember..

Mother Nature was a bitch yesterday!! That was the meanest April Fools prank EVER!!!! I can't believe she made it SNOW!!! And it was hard at times! Thank goodness she stopped at a prank!

Well, I think that is all for now. I will be back later!