Saturday, February 27, 2010

Bad, bad thoughts

I know this is something that we adult CFers struggle with a lot.  Many of us seem to have overcome it, yet many of us still struggle with it on a daily basis.  What is it that I am talking about?

Letting someone important into our CF world.

And by important I mean someone we love and want to spend the rest of our lives with.  Someone we want to share all of our secrets and heartaches with.  Someone whose shoulder you want to cry on and whose hand you want to hold.

That special someone.

This has been a very hard thing for me to do.  It is turning out to still be very difficult for me to do.  And given the man I am dating, it should be easy.  But it is not.  It is harder than I thought it would be.  Granted I have overcome some of my own obstacles like vesting in front of him and wearing oxygen during "ahem".  But these are only the superficial areas of CF.

There are so many more things that I need to let him into.  Like when I am in pain (which is way more than I like these days), when I am having one of those bad CF days, going to the doctor with me and just talking about CF stuff.  We do live together so it's not like I can really hide anything physical, but the inside things, I can hide those like a champ.

You are probably wondering why this should be easy because of who I am dating.  So for all of you who do not know, I am dating the brother of a close friend of mine, whose husband had a double lung transplant Thanksgiving day of 2008.  The hubby and my man are also very close friends, and he is a big part of the support team.  So obviously he knows what to expect in a way.  All CF cases are different I know, but there are still so many similarities.

And while I am at it, it also has me thinking that I want to stop him from having to deal with anything that I will go through in the future.  I know he can handle it, I have total faith in that, and he has a sister who has dealt with it all too so he has a support system.  But that is no consolation to me at all.  And it should be.  I should be ecstatic that after all these years of dating assholes who couldn't and didn't want to deal, I have found someone who can and will.

So why can't I be happy for myself?  Why can't I stop thinking that I should tell him to go away and not to worry about me?  Why do I stay?

Well I stay for purely selfish reasons because I love him more than anything and can't imagine life without him. But this love is blinding me, and making me want to protect him.  He has met me at a time in my life where I am not really ME.  I am a dumbed down, less active version of the person I once was.  Will he still love me when I am transplanted and can do all of those fun activities again?  And why must I think about all of this now when I have not even started the evaluation process?

If you didn't think I was crazy before, now you are well aware of it.  I am a looney waiting for the straight jacket and people in white coats to take me away.

Wednesday, February 24, 2010

It's raining outside and in my head

Another day another blog.  And still feeling lost and blah.

I want to shake this feeling and I am starting to think it won't happen anytime soon.  I was like this yesterday and even shed a few tears.  That is rare for me.  I was hoping to wake up in a better mood today, but I sept until almost noon (with an hour earlier to read a few chapters of my book) and still felt moody.  No desire to exercise, no desire to leave the house, no desire to eat.  I didn't eat dinner last night, which my boyfriend commented on.  I ate dinner tonight but it was my only meal today.  I hate feeling like this.  I will be sure to mention it at clinic and hopefully get something to add to my anti-depressant.  While I am sure I will overcome this in a few days, I don't like not wanting to smile, or eat or exercise.  Hell I didn't even do my night time treatments last night because I didn't feel like it.  We all know that is not good in <40% FEV1 land.

I know right now is the in-between period for me.  I have to wait until April 1st to switch my residency, apply for SSDI, etc.  So until then I feel like an outsider.  Like I am just here and not here.  I can't drop my long term disability insurance until SSDI kicks in, which means I can't get a small part time job or go back to school until that happens.  I can't re-decorate Peter's entire house because that takes money and I am running on a tight budget and so is he.  There are only so many tv shows, and so many books you can read.  I have almost completed an entire baby blanket in about 10 days (will be done Friday for sure).   What else can I do?

I just hate feeling like I have no purpose.  Hell I can't even volunteer on LTD because it is like work.  I don't know how people do this for long periods of time.  I'm going insane and it's only been 2 months.  Sad as it is going into the hospital wouldn't be so bad right now because then at least it would be a change of pace for me.  How sad is that?

Guess I better be careful what I wish for or I might just end up inpatient at clinic next month.

Thursday, February 18, 2010

Stubborn to a "T"

We as CFers tend to be a stubborn and independent bunch.  I am no exception.

This week has been a lot of fun for me!  I have been decorating my boyfriend's daughter's room for her for her 8th birthday (which is Friday) while she is on vacation with her Nana in Florida.  She adores pink and princesses so I of course did just that.  Her walls are pink and one is chocolate brown.  Then her white bunk beds and new white bookcases look fabulous on the brown wall.  I got new bedding, new curtains and re-arranged the whole room.  Now it looks like a little princess' room.  I can't wait until Tuesday when she gets home so she can see it!

Of course with all of this work comes th CF side of life.  My chest hurts, my back throbs and I haven't been able to catch my breath since Monday.  OK that last one is a bit of an exaggeration but you know what I mean.  I huff and wheeze and struggle all day to breathe, yet I refuse to stop.  It's hard not being able to move your own things around so a part of me insisted that I do this all on my own, no matter the cost.  And I felt like I needed to make up for my inability to move my belongings.

This past weekend I moved the rest of my stuff up from my mom's house in PA.  I was lucky enough to have my friend Tina come down with me to help.  It was nice having someone else in the truck for the ride up this time.  Usually it is just me and it does get boring.  And I would have been really bored since the cig lighters didn't work so I couldn't use my iPod.  Anyway, packing the truck just was not in the stars for me.  I was so SOB after moving a few books, light ones too, that I had to stop and watch.  It SUCKS.  Being on the sidelines for things like that really get to me.  I am supposed to be able to do it all on my own and when I can't I feel incompetent.  Each move it gets worse too.  Last time it was only the book boxes and really heavy stuff I had to avoid  This time it was pretty much everything.  I did unload some of the boxes into the house on my own and then Peter helped me take the rest to the basement.  I carried them to the top of the steps and he took them down.  But even the 20 feet from the truck to the stairs wore me out super fast.  I was leaning on the door in no time.  It depresses me.

I know this isn't the first time I have written about this and I know it won't be the last either.  I just wish it would all go away so I could do the heavy manual lifting and moving I am used to doing.  Depending on someone else to do it is not my cup of tea.  But I insist on pushing myself until I absolutely can not breathe or until I am forced, by the people helping, to stop and relax.

Stubborn?  You know it...and I will be till the day I like 30 years :)

Tuesday, February 16, 2010


This is Jessi, Eva, and Talana.  They all met at the premiere of Eva's documentary 65 Red Roses back in October.  It premiered on my birthday (Canada only sorry US folks) and they were awesome enough to get this picture.  I've been lucky enough to meet Talana and will be meeting Jessi in the next few months.  Ironically, or maybe unfortunately, both reasons for meeting these two fabulous ladies is a death of a fellow CFer.  I met Talana at Jenn's memorial and I will be meeting Jessi at Q's memorial.

I posted this picture because of the last post, Eva.  If you have a few minutes check out her blog and leave a comment.  As of yesterday she was still alive.  She needs all of our prayers so that her journey into the next world is easy.  She is such a remarkable woman.  The world is loosing an angel.  God must have a special need for her to take her so soon.

Monday, February 8, 2010


Short of breath, NOT son of a bitch!  :)

Yep, that’s right.  I am very short of breath.  Little things are taking so much more out of me than they should.  Even just sitting around is painful.  The ache in my back is back which means I am hunching over and trying to breathe more than normal.  I always have a dull ache in my upper back, but when it gets painful to where I need to take Motrin I know I am brewing an infection. 

I was talking with a fellow Cyster over the weekend and she was telling me she has a checklist for infections.  One that lets her see if she is brewing an infection or if it is just an off day.  What a brilliant idea!  So mad I never thought of that before.  Each checklist will be different for each patient, but the idea behind it is the same.  What makes you realize what you are doing is no longer working?  Is it harder to clean?  Is it requiring more treatments a day?  Is it requiring longer treatments a day?  Is it sleeping more?  I am going to sit down and write one up for me.  I love the idea!

Getting back to my shortness of breath dilemma.  I am going to move my appointment with Dr H up and make an appointment at both Children’s in Boston and MGH.  I need to find a doctor up here no matter how I feel about Dr H.  Being sob has made me realize this.  I tried calling for appointments today but I was too late for both clinics.  I’m used to mine closing at 5 and I called at 4:00 and both were already closed.  Bummer.  So tomorrow I will be calling and finding out what all I need to do for the consult meeting.  I signed a form at Presby already to let them send my records to whatever clinic I chose, so that is taken care of.  I will just have to call and give them the numbers and contact info so they can be sent off.  Once I make the appointments of course.

So that is pretty much it on my front.  Hoping I won’t need some IVs but since the Cipro doesn’t seem to be keeping the infection at bay and there are no more inhaled antibiotics I can start immediately, its looking like it might be my only option…phooey.  

Wednesday, February 3, 2010

Feeling blah

Life not working sucks.  I feel like a total loser, like I should be doing things and I am not.  I know this is all for my health and I can’t imagine getting up at 5:30 again to go to work, but I still feel like I am worthless.  I knew these feelings would hit eventually but I really hoped they would hold off for more than a month.  I’ve been out of work 5 weeks, that’s it.  I am just getting into a routine with my meds in my new home.  I should not feel like I need to work to show my worth.  But alas, I do.

I am hoping that once I get all of my stuff up here and I have my exercise videos and ball I will feel better, because then I can exercise.  Right now, all I am doing is sleeping until 10-11:30 and then sitting on the sofa till Peter gets home.  I do wash and sweep but I haven’t done much else.  I just don’t have the energy for it.  I can’t tell if it is a mental lack of energy or a physical one.  Meaning, am I hitting another low point and will need to ride this out and hope to feel better in a few days or weeks?

And I don’t want anyone who doesn’t work thinking I think they are losers.  I don’t and I know this is for my benefit.  But I have been working since age 15 so for me not to work is just weird and strange to me.  I don’t like it.