Ugh! This Storm...

This storm, or rather this series of storms, has been killing me! I have had a lot of pain with it. I think it is because the pressure keeps changing. Last night I woke up and had to take Tylenol 3 because my knees hurt so bad.

Well yesterday was my appointment with my doctor to get the stitches out. That went well! And he said that everything looked good and healthy, no concerns! But my body is fed up with the prednisone now. I am retaining water, and that is bad. Prednisone not only makes you gain water weight, but it also increases your appetite and cravings, and makes you get fat too. I am having a hard time with the cravings. From the time I wake up until the time I go to bed, I CRAVE (not just want... have to have!) sugar. I am not that hungry, I just constantly have to have something sweet. Fruits work... but that gets expensive!! Sweet tea works most of the time, but chocolate is the best. I am geting concerned with the weight gain (30 lbs now) and the sugar part. So today I have an echo to make sure my heart is doing better, that the pressures are more normal, and so long as that is the case I get to start backing down off the prednisone. That is good for the sugar and weight... but my lupus may not like it so much. Once I am down on the prednisone we are going to chheck my sugars, just to make sure that it hasn't effected my insulin and such... I have type 2 diabetes in the family. Just what I would need to get!!

Tomorrow I go see my rheumatologist for a lupus check up. And I am making chicken kiev for dinner tomorrow. I haven't made that in a while!

I'm Retarded!

So I just spent like the last week forcing myself to read this boring book, all because I wanted to read this classic. Come to find out it was just the intro by the author about his boring life!! Ugh! over 20% of The Scarlett Letter is the intro by the author! Needless to say, the actual book is better than his into. Who cares about his boring life in The Common House!?! Not me!

Well, I went up again the day before yesterday ( so two days in a row). I am now at 22ng. And I am concerned. I have read all of this info on this drug. There are no studies showing the effects/effectiveness of Remodulin in doses above 46ng. The average life given by this drug is 6-8 years, but I am already halfway to 46. So I am wondering... am I just not to the strength I need? Am I responding well, but needing more? Is it going to give me less of an extension on my life? I am not sure. I will have to be asking the doctor next time I talk to him, or Sondra. I am ok with any of these. Even if it doesn't give me as long as others get, I am still so much better than I was before. I am almost normal... even if just for a little while.

Today is my grandma's birthday (69th I hear). We are going out to lunch to celebrate with her! I am excited! And my hair is getting long enouigh to do stuff with. I have been putting it in little piggy tails! I look like a little girl! And today I put it back in frenchbraids. Cute! I am back to normal after my digression last week. And I think I am mostly over this cold. Thank you to all those who have expressed their desire to see me, but have stayed away because of illness! I appreciate it! I hope you feel better so I can see you!!

Up up and away!

I went up again on my dose today. No headache yet, but I do have pain in my legs. But that isn't as bad either! I noticed that the last 4 days I have digressed about 3 weeks. Hope to see improvement again!

I made a pair of earrings today. I think they are pretty, but they aren't my style.

And I am reading The Scarlet Letter, and I am not sure. The sentence structure is so old. There are way too many commas and other punctuation. Almost like writers then thought that the fewer periods and longer the sentences... the better the writer. That just makes it irritating, makes me want to re write it!! Hahaha! The story so far is good though.

Vacation!

Mom is on vacation, which means I am on vacation!! *wink* She went to Mesquite, NV with Kristine. It is Kristine's 21st birthday tomorrow. I hope they have fun! Joe is here in Junction with Eme. I made a pretty necklace for Kristine, I hope she likes it! I do. That is the picture I put in this post.

I have had a hard time breathing again, and I think it is because I have that cold again! It isn't as bad, and I hope to keep it that way. I have also been having leg pain yesterday and today, and have been a little shaky.

St. Paddy's Day

Hello there. I hope everyone had a great day yesterday!! I did. My friend Ryan took me to a party/bbq at a friend of his' house. It was a lot of fun! Found a knitting group to join! And I got to spend some time outside! I hurt a bit today (damn sun), but it was worth it!

I had a talk with my nurse yesterday, and we are staying at 18ng for this week. I will call her again on Tuesday, and we may go up then. I am also trying to use my oxygen less. I went to the store with Kissy today without it, and did fine. I will, of course, still use it when I need it. But I can't tell when that is if I don't go without it some too.

I am making dinner tonight. Joe did tacos yesterday. I am doing a traditional Gaelic dinner tonight. Guinness onion soup and soda bread.

And Rae... I would love to see you, I just don't want to bother you!! So let me know when Meg is better, and I will will be delighted to see you!!

Normal?

I just got back from a fabulous lunch! I went to The Blue Moon and had a Monte Cristo with my mom and Aunt Geri. It was great. Tomorrow I get to go hang out with people my age!! Yay!! And yesterday I went to the mall! What a week! I am almost a normal person (I know, I know). I made a pair of dragonfly bobby pins last night, they turned out really nice! I have picked out a few more projects to do to! Gotta get a shopping list together so I can do them.

Story of the Month!!

Ok, so I have got to tell you about this lady I ran into at Barnes and Nobles! I was there this evening with Mom and my sister's boyfriend, Joe. We were looking at the bargain books, spaced out. I was wearing my oxygen tank. This lady, in her mid to late thirties I would say. She walks up to me and says "Does that help you breathe better?" refering to my oxygen. I look at her blankly for a few seconds and in typical Anna fashion blankly say "Uh, yeah." "Cause I get bad allergies. I wonder if that would help me." I am lost for words already, and she goes on. "I have a hard time breathing with that sometime." I say, "It isn't for that." An she asks, "Oh, what is it for?" "A medical condition, Pulmonary Hypertension." She laughs, "What is that?" Knowing there was nothing I could do at this point to help her understand, "I have a hard time getting oxygen into my lungs and blood." "Oh, yeah. I have that problem sometimes too. I will have to look into that." And I stare at her like she is the stupidest person alive!! She walks off when my mouth just hangs open. Hahahahaa!! I am still laughing!! Mom was a row over and overhears the whole thing. I guess another lady in that row heard it too and was rolling her eyes. Joe was just as dumbfounded! Oh my god!! Can people get any more retarded?!? Ok, not fair, but the lack of intelligence is just astounding!

I upped my dose today for the last time in a while. I talked with my nurse and we have reached the point where I need to rest for a while. I get the headaches when I go up, and I have started having leg pain. It is like I have been walking up a huge flight of stairs when I stand in one place for a while. It goes away when I rub my calves and feet, or when I sit or lay down. So I call her again next week, so I will keep you abrest of this!

Going to a comic book store tomorrow with Joe. I bet they have more intelligence than that lady!! Geeze!!

Crusts

Again, no major side effects! I do get cramps in my lower legs and my feet ache. Sondra said to keep an eye on that, it could be a Potassium deficiency. I cleaned my dressing yesterday and noticed a little crusting. I called Sondra to see what she thought, and my PCP. They both think it is just crusting, which can happen for the first few months, especially if you move the catheter. So I am to keep an eye on it, and the next time I clean it I need to put pressure and see if anything comes out. No fever, no redness, no gross-looking-ness. So I am not worried yet.

I also just got my first shipment of medicine! Yay! I will go up in dose tomorrow. I will be mixing at 3ml Remodulin, 97ml saline. I will be on my highest pump rate, 45, making my dose be 16ng/kg/24 hr. Just so you know!

I am looking at my business (photography) And I don't have to register for a sales tax license, but I need to register my name. It will be $50 to do that. If I register for a sales tax license, I get to buy things for my photography sales tax free!! It would cost $54 and I would register my name too.

There are no cute sales out there. I am looking for shirts for this spring and summer that are relatively inexpensive, and capri's that are my size! So if you find anything let me know! I am a size 4 right now, but and trying to move to size 6.

OUTRAGEOUS!!!!

Shawn, a former co-worker sent this to me. I hope to GOD this doesn't pass!! I can't believe that there is a government out there willing to let people, who have a chance to live longer, just die!! And the fact that it is Britain! Even worse.

I am doing well today. Just tire. I did go up 2 more nanograms. Have bit of a headache, but nothing big. I will go up again Thursday. I am, however, having a harder time breathing. I think it is because of the storm. Storms make lupus inflammation worse, and my lungs do suffer from inflammation. It is supposed to be stormy tomorrow, and then sunny the rest of the week.

Nothing new.

I thought I should check in to say... there s nothing new to report! Well, I guess that isn't true. I made a cover for my Kindle, and got a new table to mix my medicine on. I found my needlework!! I had forgotten where I put that! I have a big tiger that I had started cross-stitching a long time ago.

Joan gave me a book with a CD for Meditation. I started reading, and I really like it! I have always wanted to try meditation, but I could never be quiet! Maybe this approach with help!

I had computer problems earlier today, but those are hopefully taken care of.

And Lowe's still hasn't received my shelf brackets!! 3 weeks!! They are checking on it tomorrow.

That is about it! Mom got a new car! A Buick Lucerne. We get it tomorrow. I will let you know how I like it! I think it will be nice, and the important thing is Mom and Dan like it.

My medicine got upped to 14ng last Friday, or was it Thursday. I didn't have any bad side effects, so we will go up tomorrow again. However, the storm leaving this morning made me hurt so bad! I haven't hurt that bad in a while. I hope there won't be any more storms for a while.

From the PH Journal

I am a subscriber to the journal for PH, Advances in Pulmonary Hypertension. There is an article in there that I swear was written just for me!!! Pulmonary Hypertension in Systemic Lupus Erythematosus! So if you are interested... check it out!

I went up to 14ng today! I have a tiny headache, nothing tylenol won't fix. And today I have finished applying for assistance with insurance premiums. I put together an email for the fire department, and will be going in to speak with their medic on Saturday. I called Community Hospital, and I need to go in one weekday and speak with someone there. Then I called St. Mary's Hospital. They are the most un-organized group of people who don't listen!! If I am in an emergency... please don't take me there!!! I still have no idea who to speak to because no one understood me, and wouldn't take the time to listen. Reminds me of when I fell walking from the bathroom because no one could come walk me and two nurses stood there watching mom pick me up!! Still pisses me off. Grrrr.....

First Emergency

Well, I had some excitement last night! Ok, not really. But it could have been exciting. I was eating dinner and my tubing broke. I am still not sure how it happened, but it did. There is a little filter on the tube that filters out air and is made of a hard plastic. It snapped there. I had to change my cassette, but it really was not a big deal.

Other than that there is nothing exciting or new to report. I go up to 14ng tomorrow, and I clean my dressing today. I am going to have mom do it tonight. She needs to do a cassette soon too. Keep her in practice.

My cold is killing me today! My sinuses hurt again. So I am just relaxing today.

Done for today.

Well I have spoken to my two main doctors now! My primary was awesome, as always. My Rheumy wasn't too bad either. Neither of them want to deal with this. From their stand point... I am a pain! But they also don't like to see me having to go through this. It is definitely going to be hard on both of them. Everything seems to be going well from a medical standpoint.

I still have my damn cold. And I upped my Remodulin yesterday. I did build a tv stand (Dean and Kristine helped a lot!) and today I emptied out the desk that used to be my tv stand. Man is my room looking better! I have been using my oxygen today. My nose is making it harder to breathe. But now I am done for the day, I am going to play some online bingo, maybe a little DS, and read a little. Oh yah, I read the new Steven King book, "UR", it was ok. I have to finish a friends jacket and sew a non-slip backing to my rug. I can do that whle relaxing!

A Gentle Reminder

I keep hearing from people that they keep checking my blog, so thanks and yay!!! I know some people are able to comment while others are not. I myself am unable to comment. So I am not sure what to tell anyone to do, or what anyone may be doing wrong!

My cold is still here... but so am I! I have sinus congestion, I cough stuff sometimes, and my body is VERY achy. I am not sure where I picked this up at, since I haven't been able to really go anywhere.

I am going to take this time to remind everyone of a few very important things, so please don't be offended! I am on a large amount of immune suppressants to keep my lupus at bay while I heal from my surgery and will be on them for at least another month. I am very prone to infection and illness right now, and am allergic to almost all antibiotics. IF you are coming to visit me, it is important that you wash your hands well, or use hand sanitizer. I always have some if you don't. And If you are sick I have a face mask you can wear, please let me know! You can be contagious for a few days after you start feeling better when you have the flu or a cold. I love seeing people, so don't stay away because you are afraid! We just need to take precautions!

Tomorrow I go to my primary doctor (pcp). I will go over the diagnosis, PHA patients guide, the Remodulin, emergency procedures, cassette changes, dressing changes, and the catheter itself. This is a big visit. Then on Tuesday I do the same with my rheumatologist. I also plan on finishing more applications for assistance, and getting ahold of a lady here in Junction with Pulmonary Hypertension. I want to look into when the next health fair is here in town and see about doing a booth or something for that. If anyone is interested in helping me when the time comes let me know! I will put the information I get in here when I get it! I know Rachel is busy with the walk for cancer.. Relay for Life? I am sure not the March of Dimes walk, but I am not sure if it is the Releay for Life...

I have a theory when it comes to the side effects that I feel with the Remodulin. I think it makes whatever minor issue I am having worse! (Yay?!?) Like that day I got the big headache, I had a small headache (very minor) earlier for whatever reason... then it got BAD! The other day I got a headache from fatigue, it got worse! And this last time I had sinus pressure that turned terrible. I also noticed that if my sugar falls, I get very shaky, more so than before. I am keeping a journal of just the side effects and tracking all of this to see what it does to me. So I guess I will see!

Well, I am signing off for the night! I will let you know how the doctors appointment go this week. I am interested. They can go two ways... really well... or the doctors could be offended that I try to "teach" them. I love my doctor, and I don't think it will go badly, but I am not the most tactful person in the world either. I also hope I didn't offend anyone tonight.