Slight predicament

Today I had clinic. It went well. Thankfully I got my PICC pulled! Tomorrow morning when I shower it is going to feel amazing. My FEV is back up to 45% and everything sounds good.

I was able to talk to the social worker and here is where my troubles begin. I'm not so sure about SSDI now. I'm very worried that I'm not going to get much (or at least what my print out each year says I qualify for) and you can't make much working part time on it either. I REALLY REALLY REALLY want to move to Boston the end of this winter, but I can't live there if I'm making didly squat. Its not like I'm going to have someone to live with and yes a roommate is out of the question.

I was afraid she was going to tell me something I knew was true but hoped it wasn't. I won't qualify for Medicaid in PA because my company offers COBRA. So I'll have to pay $400 a month for that PLUS my shitty co-pays. That right there would be 75% of my SSDI income. Not good.

My mom told me she would like to move to Key West in the next couple of years. So either way I would have to live on my own, be it down here in Langhorne or up there around Boston.

My thought is what if I find a full time job when I move? Is that so bad? I know what the minimum is that I need to bring home to survive. However, if I don't work I can take classes which gets rid of my student loan payment for the time being. Maybe I can find something good up there that will allow me to live on my own.

I don't know what to do. I really want to move and I really want to be independent about it. I will have to look more into MA welfare programs and see what I can do. I hate saying welfare but its needed. Or maybe I can find a small part time job that will offer benefits. As long as I can get health and rx coverage I'm good. I'll skip eye and dentist if I need to.

And of course this brings up a secondary thought. If I decide to work full time up there why am I waiting until March to move? I could go right after Christmas.

So much to think about, so much to decide...
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Untitled Poem

The colors
Bright, sunny, bold
They shine like glass
Piercing my eyes
Blinding me with their beauty

Looking out over the water
I feel a sense of peace
No one can hurt me here
No one can disturb me
If only I could stay forever

Feel the wind rustling my hair
I look up into the breeze
The cool air refreshes my mind
Enticing me with its dance
Calling me to settle down

Where are you from?

I'm curious to see where all my lovely blog readers are from!!

So even if I know you and know where you live, add it here so we can all see!!!!!!!!!

I'll tally them up at the end of the week and see the results.

My trip to see 2 of my favorite people

While I can sit and bitch about the hell of my day so far I won’t. I’ve been home for less than 12 hours and it has been HELL HELL HELL. I should have stayed in Swampscott!!!!

So instead I will talk about my awesome visit with Shawn and Tina!

I got up there on Saturday night. It started out rough. Apparently my grandparents are watching over me. My Jeep fishtailed and hydroplaned on an on ramp and I missed the guardrail and the cars coming at me as I spun around. I ended up facing the wrong way on I-295 as cars were going around me. I pulled off to the side and was like “WTF just happened?”. I didn’t cry, I didn’t shake. I just sat there wondering how the fuck I was still alive and didn’t hit ANYTHING.I made it up to Boston without another incident but boy was I nervous for the next two hours after it. Guess I need some new tires!

Sunday we did some witchy things in the rain. And then went to Tina’s brother’s house (who is cute LOL) for dinner for his birthday and their aunt’s. It was a lot of fun. A very entertaining group and I can see where Tina gets her personality!!! (It’s a good thing Tina!!!). Sunday night we went to the house of Seven Gables based on Nathanial Hawthorne’s novel by the same title. It was really cool.

Monday we did more in Salem and Marblehead and visited the lighthouse. God it is BEAUTIFUL up there! It was exactly what I imagine NE to look like. The rocky coast, the crashing waves, the blue skies and boats. I regretfully left Monday afternoon.

I loved it up there!!!!!! It was so beautiful!!! I so want to live up there!!!! The thought has crossed my mind way more than once. I could come back every 6 weeks for my DRs appointments and since I’ll be on SSDI I won’t need to worry about looking for a job. Plus I’ll have friends.Hmmmmmm……

So I leave my faithful readers with some awesome pics of the coast… (click on the pics to enlarge them)

Tina, Shawn and I

You can see Boston in the back

Gorgeous

Boston

Does it need an explanation?

Trying this again

I wrote a nice long blog the other day, attached a picture, decided to delete the picture and oops there went the whole blog. Not easy typing on a blackberry so I decided to wait to try again. So here we go!!

I am feeling a whole lot better. The tightness is gone and with it is the pain. I just have some slight soreness but I attribute that to not using my lungs for two weeks. So I pretty much feel almost baseline. There was only a small infection behind my blocked airways which is good. Of course if I had been smart and called right away there wouldn't have been any haha. Another patient was admitted yesterday for the same thing - a bad reaction to Colistin. So I feel better knowing that this is most likely what caused my bronchial spasms.

The Prednisone did wonders and I'm glad we used it. Took the inflammation down almost overnight. I've been tapering it since Sunday and I'm down to 5mgs in the am and 5mgs in the pm. So this way when I go home I'm off of it. But its nice to know it worked so well so that if this happens again we are prepared. I'm sure I'll have to try the Colistin again just to see what happens. It could have been a fluke, it could have been that or maybe it was just the seasons changing. But knowing I have the Prednisone if it does happens makes me feel a bit safer. Those spasms are SCARY!!!!

I've been lucky with tons of visitors this round. I feel blessed to have such great family and friends. Its been good for my spirits too. I only had one other day where I was a little upset. But I woke up the next day feeling better. You can't dwell on things that can't be changed. Just have to accept them and move on.

One of the great decisions I made in here is to definitely do SSDI. I've spent my time in here worrying about work and that's not fair. I shouldn't have work as my top priority. I need to focus on me and get me healthy so when I am evaluated for transplant I am a good candidate. I need to work on exercising so that in the spring I can run that 5k. I need to hang out with my family and friends more so that everyone has good memories of me when I pass (hush people). I don't care if people view me as lazy anymore. At least I'll have a dam life right?!?!

I'm hopefully coming home today or tomorrow. Dr H is in Minn at the CF conference and there is another pulmonary Dr filling in for him. I saw him yesterday and he said he would shoot to get me out today. So that is exciting. If so, I can go to Boston for the weekend! My birthday present to myself wohoo!!! I'll take it easy seeing as how the person I am visiting ( well the CF part of the couple lol) was just released from the hospital too. But we will see Salem and I can only imagine how awesome it must be around Halloween! Bring on the witch hunting!!!

That is all I have for now. I say leave you with a request...
If everyone could say some prayers too. My step mom's liver enzymes are elevated and we are worried the cancer may have spread. I think we find out today or tomorrow. Not too sure. But please keep her in your thoughts and prayers. Thanks!

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Happy Birthday to me

Today is my 29th birthday! I'll have to update all my info once I get out of the hospital.

This is my first time spending my birthday in the hospital. So far its not too bad, though I did only wake up an hour ago. But positive thoughts!!

The last two days were very rough for me. Thursday I didn't get in until after 5. It took a while to get a bed available. I did have a good laugh when I got here. I was waiting in admissions for transport to bring me to my room when Dr H walked in with a wheelchair. He was there to take me up!!!! I cracked up!! Nothing like service with a smile haha!!! He asked me how I was doing and I said slightly better. Then he listened to my lungs and told me I was moving a tiny bit of air but that Wednesday a stone statue was moving more air than me. Which I am pretty sure was the truth. He had given me some Prednisone to help and I guess it did on a very small scale. I took 30mgs over the course of 15 hours. Just a low dose since I'd never taken it before and no one was there to monitor me.

Thursday night was rough for me. I cried a lot. Just couldn't stop. I felt bad for the xray tech and the RT. Not hysterics, but just tears. I kept thinking about being in on my birthday, it only being 2 months since I got out (August 24th my PICC was pulled), leaving work with a crap load of work that I didn't get to finish, and having no one to talk to. I don't mean friends, I mean a current crush, boy toy, special someone.

I woke up Friday feeling slightly better emotionally but still shitty physically. Fevers all day, needing treatments every 3 hours, low O2 sats and bad lung pain. I "passed" the 6 minute walk test. Or failed. Whatever you are supposed to do lol. I didn't use O2 but I should have and we got lucky since I had a treatment 20 minutes before I went. I was still very SOB during and after and dropped into the mid 80s. I got to nap on and off the rest of the day though luckily. I had my O2 on a bit since resting I was around 86 87. So yeah.

Dr H put me on Prednisone last night and through the weekend. We started with a burst of 40mgs last night and then 20mgs this morning and 20mgs tonight, same tomorrow. So far the 40mgs has helped! I don't feel nearly as tight and I can take a sort of deep breath. My fever has broke thankfully but I've also had about 3000mL of saline since Thursday night haha. Now hopefully I can start getting the gunk up that has been blocked behind my non working airways.

I'm super bummed that I can't go to Boston next weekend. I was going to go visit Shawn and Tina and also see Jenn's fiance Andy while I was there to get some of Jenn's yarn. And Sunday I was meeting with a friend of my friend's who does professional photography. He was going to do a shoot with me! But he lives in Washington state and is only out that weekend for a wedding. So that is shot to shit too. Oh well. I was looking forward to seeing the beautiful foliage up there and looking around to see if I'd like to live there since I've been considering it. Oh well maybe the following weekend!!!

Well that's my update for now. I'll keep everyone posted and hopefully I'll be out by Friday (and if I am. Maybe I can sneak up to Boston anyway lol).

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Being admitted

Well I am going in the clinker tomorrow. FEV1 is down to 26% and I am so SOB I feel like I am strangling. Dr H said it sounds like a severe asthma attack since I benefit SO much from the Albuterol. So who knows. But looks like at least a week in lock up.

I am going to talk to them about a possible port placement. I don't wanna deal with another PICC. I'm dreading it. And as much as this admission sucks, it adds to my case that I should be on SSDI :)

Gonna go pack my bags and enjoy dinner at my dads tonight!!!!

<3

Tiring week!

Today has been a semi-rough week. Between the Colistin making me tight as all hell and the low grade fevers I have been running, I am exhausted! My FEV1 on Wednesday was 32%. That was pre-bronchodilator but still. 9% drop is not fun!!!!

I know it is the Colistin because it is the same way I always felt on TOBI. I guess these inhaled abx are not good on my lungs. They are supposed to help but all I feel like doing is crawling into a hole for 28 days and hoping that it goes really really fast! It got to the point where now I am doing a treatment in the middle of the day at work. I need to in order to function. It’s really bad. And kind of weird that at the 4 hour mark I can feel my lungs constrict. I go in the back bathroom at work (privacy is needed for nebs lol) around 1ish and by 5 I am tight again. But at least it helps me get through the afternoon. And when I start to get tight I feel the fevers pick up. Very odd.

The fevers started Monday night. It was only 99.5 but it was there. Then I was fine until Wednesday when it was 99.6 at the DRs and then it hit 100.5 by night. Now I am running between 99.5-100.5 everyday. I feel sort of ok, just tired. I assume I am fighting something off. I wish I could figure out who was winning!!!! I’ve been going to bed around 8 every night so sleeping is really helping. Of course I don’t get home until 6:30 so I don’t get a dam thing done at night except for my meds and that’s it. Social life what? LOL! That will be one of the good things when I go on SSDI. AT least I won’t have to worry about my life disappearing when I get fevers and need to sleep. I can sleep during the day yay!!!!

I have another appt this Wednesday so based on how I feel I will see what I need to do. Hopefully the fevers will be gone and then I can be safe haha!

What really stinks is I can't run at all now. I just can't do it. I cough constantly without movement and when you add walking I can't stop. I don't even want to attempt running!!!! It sucks because I am going to have to start over when I am done with the meds. How am I to train for a 5k when every month I have to take a month off? No bien!!!!!!