I'm Good.

I saw my rheumy today, and my lupus is doing great he said. That is a good thing!! Both of my doctors here are not concerned with my water retention and say that it is related to the prednisone. Dr Faber said that once I get down to 10mg or less each day that I will notice a significant decrease in my retention. I just wish it would go away!! I hate looking like a cherub! I try not to be vain, but I am. Of all of my possible lupus symptoms, it was the ones you could see on the skin that made me scared and cry. The physical I can handle. Does that make me a bad person? I would rather hurt than look bad?

Dr Bull from Denver wants to see me before the appointment I have scheduled, June 9th. So he set it up where I go in on May 13 in the afternoon. Graduation is May 12, so Mom and I will be leaving May 13. We also upped my medicine today, so I am at 34ng. I got my shipment of medicine in yesterday, we upped the concentration of the medicine itself. So I used to use a vial of Remodulin that was 1mg/ml, and now I am using a vial that is 2.5mg/ml. That changes all of my measurments, but I use fewer bottles each month.

Niki and her girls leave to go home tomorrow. We are all sad to see them go. We will miss them! Things have calmed down a bit, we are more adjusted. But it will be nice to have things go back to "normal". Some things will never be the same though.

About a month ago, I found out that my cousin Eric has cancer. They are not really sure what kind he has, but it is very aggressive. It is throughout his entire body, on every organ, and they are working on it. He is a minister of a church in Delta, and has a great support system. Just thought I should mention that. My Dad is going to be coming to town again this month, around Memorial Weekend! That will be nice too!

And finally, I saw State of Play, and I must recommend you see it! I thought it was great! Ryan didn't like it. Just kidding Ryan. He said it wasn't his kind of movie, but it was good. Well, I will sign off for now, gonna take advantage of the quiet and take a nap!

Excitement.

I am so done with close calls! This morning I had to mix my medicine. I don't look at my pump. It stays in my bag, I only look when I change the cassette or when I hear it beep. When I went to switch the pumps ( I have two) the one I was hooked up to was off!! Yah, you read that correctly, off! I have no idea how long, nor how. All I do know is that I woke up at 930am, took a shower around 10am, and started mixing my medicine around 1030am. I felt ok in the shower, but just afterwords I was noticing that I was really short of breath, and a little light headed. Before you worry too much... No, it isn't supposed to happen, yes there are safeguards that should prevent that, no I haven't called the company yet, and yes I am doing it tomorrow. The nurse I need to talk to is M-F type, and I need to order my next shipment.

As for the wierd things I feel... I was sick again Saturday but not today. I will keep track of that. My nurse in Denver is back on duty Tuesday and I will call and talk to her. And I will let her know about the pump too. My water retention is doing ok. I am again retaining more than I am putting out, you can see it in my face and belly. I start taking just 20mg of prednisone each day tomorrow!! I am not hurting nearly as bad as I thought I would be coming down!

Yesterday I spent the day with my grandpa. It was great! We went to a plant sale, had lunch, went to get ice cream, and just hung out and talked. I loved it. I think it was as good for me as it was for him. He said he had a rough morning that morning and we talked and both of us cried.

Digression, Again.

Before all of this Pulmonary Hypertension stuff I was having issues with my esophagus. I had gone to Denver to have a surgery and several stretchings here in town. Part of the reason I was so skinny was because I couldn't swallow food! While I was in the hospital I didn't have any problems with that, nor have I had any since. I was assuming that it was fixed. I was wrong. Over the past few days I have run into problems with certain foods again. Not as bad as it was, but I am now fearful again. I now believe that it was the high doses of prednisone that I was on making my throat better. One of the treatment options I was looking at for that were injections of steroids right into the esophagus. And I am not sure if this is related or not...

Also before the PH I would get sick almost every morning. More often than not I would vomit, but not always. I would wake up, eat breakfast and get ready to take a shower. I would hop in, and after a few minutes I would be too hot, like WAY too hot. I would get kinda shakey, light headed, nauseaus, and in general feel crappy. I would hurry out of the shower, and lay down and sleep for a few hours and then be just fine. It reminded me of a mix of morning sickness and low blood sugar. Well, since Denver I haven't had any of those problems! Until this morning. I will have to call my nurse and talk to her. I am just not sure. How much of this is lupus, something else and PH?!? Why is my body doing this?!?

And I still have that DAMN cold! It isn't setteling in my chest, thankfully! But I am still coughing and feel yucky.

Otherwise I am doing well. I am smiling! I have some of my garden planted! And I am enjoying the wonderful weather! I am going to make my nieces matching dresses and me a matching shirt, so I will be busy here as soon as I really feel up to it. Niki is going to pick up the ceramics we painted at Angelo's last week, and on Saturday I will have a bunch of new pictures to pick up from Gene Taylors! Yay!!

Weekend Excitement

I had a pretty dull weekend. Nothing big happened!! Ok, that isn;t true. With as many people as there are in our house, you know something good happened right?!? Well, On Saturday we went to Juddah's house and watched her and her husband rope. That was a lot of fun!! Tori, Bella, and Eme got to ride horses! And I got to take pictures of it! Being in the sun for that long, I hurt pretty good yesterday. Even if I wear sunscreen, the sun still causes problems. Going out like that is a comittment for 2 days! There was only one big fight between us girls. I won't get too into it... but geeze! Mom and I went to the mall on Sunday. That was fun! We got some clothes for the little ones, and us! I got 2 pairs of capri's and mom got a pair of jeans and a shirt. It was nice to go out just her and I. Then finally Grandpa came over for dinner last night, and that was really nice. He seems to be doing well... all considered. He said he found a letter that Grandma wrote. It is about the family, and he wants us to read it.

I am going to be putting up bookshelves in my room today. That means I will have more room in here!! yay!!!! I can't wait!! And the weather this week is supposed to be wonderful! And I get to plant my lettuce! I am just so excited!!

Cold AGAIN!!!!!

Yep, you read that right. I have yet another cold. I hope the rest of my life isn't like this, they are draining. I figured I would write about Niki and her girls, since I haven't really done that.

Niki is doing well I guess. She is my sister, she is fine. :)

Tori is is going to be 4 this August, and she is busy!! She wears me out with me just watching her. Always happy, well except sometimes she is afraid of Uncle Joe and Uncle Dean. Fickle. She is so pretty!!

Anabelle was, at first, too much. Always crying, I couldn't handle it. But having been here a few days, and stress levels coming down a bit, she is soooo much better!! I tell her that her smile is wonderful! Her and Eme are wonderful friends. This morning they broke Lala's curtain together! Haha!!

We are going to Angelo's this morning to paint ceramic things. That way they are ready before the girls have to leave. The it will be lunch time and then nap time! I like nap time!! It is quiet! I will take that time to play some WoW (World of Warcraft) and be alone.

Niki and Tori are making dinner tonight, Tori wants tomatoes. I think they are making stuffed tomatoes. I think that sounds really good today! My weight has gone down to 130. So I think the meds are working now, again, for now.

More Lasix

Well, things are slowing down... I think! Mom did some work today, and Kissy went to work too. I went out with my friend Ryan. It was really nice (we got Coldstone and coffee)! I went to the doctor this morning as well. He is not sure why I am retaining this much water so suddenly. We are going with the theory that my body has just finally reached the point where it can't handle any more of the prednisone. I am down to 40mg per day. And we did decide to do lasix twice a day, so I hope it works. I go back in 2 weeks and we will see! Now I have to take potassium suppliments, which is tricky because it is easy to get poisoned if you take too much.

First Trip to ER

Turned out to be ok. As you know, I am retaining water. Well, starting yesterday, I have been retaining water a lot more... like my pants are hard to button! And my face is so puffy, and my legs are pretty swollen. So I called my Dr in Denver, and we felt it was better safe than sorry, plus tomorrow is kinda full. So I went in. They did a chest x-ray, ekg, and some blood work. No heart failure, no fluid building up in my liver. So I was sent home with Lasix, and told to call my Dr tomorrow! False alarm!! But this is a symptom of heart failure, so it was important too.

On a good note, our ER procedures are good to go!! It was very efficient and effective!!

Ok, big day tomorrow, I am going to bed. Night!!

Happy Easter!

Happy Easter to everyone!! I definitely don't celebrate Easter for the traditional Christian reasons and what not.. for me it is very much so a holiday about spring and family. I am so glad it is finally here!!!

This has been a stressful time, and I am looking forward to the joy of having all of the family together tomorrow. Niki and her daughters, Tori and Bella, got in tonight! It was so cute! Eme was so happy to have Bella here and have someone her size!

I am working with the guy at the mortuary to get the photo slide show together, and I got the music set up. I did mom's taxes, and got the eggs ready to dye. I was busy today! And I am ready for bed. For those who are interested, the funeral is Monday at 1pm at Martin's Mortuary here in Grand Junction. Grandma will be buried at Memorial Gardens, the cemetery on North Ave. That is the same one that Holly is buried at, and the same one I will be buried at. She won't be alone! And neither will Holly!

Big Loss, and Gain.

Grandma passed away at 131pm this afternoon. In the night she was almost lost twice, but held on. They had to pack ice around her because she was running a high fever, and her kidneys quit working in the early morning. She was sedated for the whole thing, so she was comfortable. Her mind never deteriorated to where she didn't know us, and it wasn't her Alzheimer's that took her. It was fast. My aunt from Texas was able to get here at about 1230pm. My uncle from Virginia will be here tomorrow evening, and my sister from Alaska will be here Saturday evening.

Today was a long and hard day for me. I am so tired. I have told my lupus that it is on hold for the next few days, that my mom needs me. I hope it listens... sometimes it does! Mom is ok. I mean, she just lost her mom, she is emotional and needs love and support, but that is to be expected. She is strong for her dad, and sisters. But then she melts when she comes home. I am doing my best to cry when I need to and deal as it comes so she can lean on me when she needs it. My grandpa is the one I am worried about. He just lost the love of his life. He is doing ok. Very upset about some of the decisions that he has made... like not taking Grandma to Texas or Virginia. But we try to let him know that he did right, that we support him, and we wouldn't change anything he has done. He has been a wonderful caretaker. It is a hard job. Hard on both of them. I just hope he takes the time now to be himself, not a caretaker... you know? I hope he can, after he grieves of course, be glad with what he can do. He can visit family, and go camping again. Daddy said that it is going to be hard, he is going to go from that feeling of being needed all the time to not being needed at all. I need him. I am going to do my best to do something with him every week. Go garden with him, or get lunch. I still need to get out of the house, and he will too. I think that would be nice for both of us.

It is bedtime now. Oh yes... about me. I went up today to 28ng. And I am doing well. I had some trouble breathing last night when I went to bed, so I wanted to see if going up would help.. if that is a good indicator of when I need to go up! So I will let you know. I also have sent off all the paperwork needed to start receiving disability (YAY!!!) and guess what?!?!?!?!?!?! It is going back to December of 2006!!!!! What this means... I don't have to wait to get medicaid! Now I am not sure if the medicaid will go into effect retroactivly (meaning it will help cover everything from Dec 2008 to now) or not. even if not it is ok! I don't haveto wait 2 years to get it!! I am going to keep my COBRA because the coverage is soooo good and I have assistance with it. I do have to start learning what medicaid covers and all that and learn about supplimental insurance. This also means that I will be getting back pay at the rate of $908 for sure starting when I stopped working in December! I am not sure, but I think it pays the difference of what I earned to that amount from being considered disabled onward, so the months I didn't make that amount because of health, and what not.. I believe I get paid the difference! I am not sure, and I am not holding my breath. But either way I get to start paying bills!! I never thought I would be happy for that.

And lastly, today is my niece Annabelle's first birthday. I am glad she is too young to know what has happened on her birthday.

I told mom, and some may be mad I am thinking this way.. but this helps me, Now I have one more angel to help me when it is my turn. I couldn't have better angels.

New Prayers

Today I ask for prayers, but not for myself. My grandma, Mom's mom, is in the hospital. She went in yesterday with stomach pain and was admitted into CCU for pancreatitis. The doctor last night said that she is very severe, that they have never seen a case this bad. She is not expected to live. Mom needs love and support from family and friends right now, and thank you for all of the support you have already given. I will be Mom's acting secretary for the time being, so please contact me for any questions or concerns. We are headed to get Grandpa and take him to the hospital here in just a few.

Last night when we left she knew who everyone was! That is so important!! She has lots of IV's, and is on a ventilator.

As for me I am doing well, I am taking this one step at a time. My wish is for Grandma not to suffer. And I mean it. I am doing my best to deal with this as it comes, my body couldn't handle me putting that off to stress about later. And no one needs problems from me right now!

Yay!!!

So this morning was/is a good morning! I was eating my Raisin Bran, and I got a call from SSA. I GET MY DISABILITY!!! I am not sure of the particulars yet, but I will be getting paperwork in the mail either tomorrow or Wednesday. I have to get them a copy of my paystubs for November through January, then after they have those I will get my benefits! Yay!! This is a huge stress off of me!

Then this afternoon I got a call from my cardiologist here in town. The echo showed no measurable progress. I am not sure what that means. He said that the important thing is that I feel better. So I take it to mean that I feel better, but I am not showing I am getting better. ...here comes some of tht stress back. damn...

Good Weather

Today is a nice day! It is sunny, no wind! Just a little chilly. And I am getting so anxious for the warmer weather! I can't wait to plant my garden!! I have been working on jewelry lately (thank you Joan!!) I have been making lanyards for some of the ladies mom works with. (So if you want me to make you one just let me know!) I have also been working on a cross stitch again. I haven't done that in a while. My project is this HUGE picture of a tiger. I got it when I was in high school, and started it a few years ago, found out I had mis-counted, and restarted it last year. Well, now I am working on it again!!

I am doing well with my medication. Breathing better, and what not. Mom and I went to Walmart and Walgreens and I didn't need my oxygen or a cart!! They were just short trips, but it counts! I will use one or the other when we go grocery shopping later.

Oh yah! I finished Scarlett Letter and it is SOOOOO much better than the damn into! Then come to find out I was the only person on the planet that didn't know about that. Argh!! The writing was very dated, but the story was very good. I have to say I enjoyed reading it! Now I have to decide what to read. The Tale of Edgar Sawtale, The Reader, The Illiad, or one of MANY other stories on my Kindle.

Strolling Along

I am doing well. We are going up to 26ng. Today I am having a little more trouble breathing, my chest is tight.

Today was a stressful day. A friend is having a hard time dealing with his life. He has a lot going on, and is unable to communicate his feelings, emotions, needs and what not to his mom and family and friend. I hope he gets through this, and I hope he knows I am here for him.

My grandpa brought me a tomato plant and a pepper plant! I can't wait until it is warm enough to plant them!! I need to get my seeds going for my other plants. Lettuce, cucumber, beans, and I am not sure what else!

Don't remember if I mentioned it, but I have been retaining water. I started on a medicine for that, and it is helping so much! We are waiting on the results from my echo on Tuesday so we can start tapering me off of prednisone. I learned that it causes your body to dump insulin into your blood, causing you to crave sugar... and in the long term can cause diabetes.