Thursday, April 28, 2011

The Big H!

Today I had an appointment with my new gynecologic oncologist for my Lynch Syndrome.  She is awesome and if any of you need to see an oncologist for lady parts I recommend her at Dana Farber in Boston (just send me a FB message!). 

I really had no idea what to expect but I knew that one question I had was about a hysterectomy.  I've gotten the run around, kind of, whenever I ask about it with other doctors.  Even my regular OB-GYN was a little hesitant to say yes go for it.  Totally understandable it is a HUGE choice to make.  But I also wanted to hear from a doctor that deals with cancer regularly.  Someone who would be able to say yes you are a good candidate or no you should wait a few years.  Someone who would take into account the CF aspect and not my age.  Yes I am young to be totally taking away my chance to have a baby.  However, given the set of genes I was dealt, I don't think I want to risk passing it on.  As much as I would L-O-V-E to have a baby it is not an option.  I won't bore you with the intricacies as I have posted many times about it.  And something I have been thinking about since my diagnosis almost 2 years ago.

When I mentioned I was thinking about a hysterectomy she immedicately jumped on board with it.  She actually just recently performed one on another CF patient!  That eased my mind a great deal to know she has dealt with a CF patient before.  She completely understood my concerns, my excitement, my questions and my slight hesitation.  I've asked other CFers that have had this procedure done so I was able to ask some other things about afterwards, sex, hormones etc.  Nothing is as scary as I had thought, and the whole thing is done by laproscopic surgery.  That means I will only have a small 1-2 inch scar on my abdomen!  I can deal with that!

I was caught off guard when they came in to schedule the surgery!  I was so used to hearing, lets talk about it another time, that I hadn't expected to walk out of there with a tentative surgery date in place.  Works for me though as I know I want to get things scheduled so when I have to make my transplant consult I will know my free time.  And this also takes 2 questions off of my transplant list. 

So all in all I was quite happy with my appointment today and am looking forward to a period free life in just a few months!

Monday, April 25, 2011

Words I needed to Hear

Tonight I relaized something. 

I have the best boyfriend I could ever ask for :)

Cheesy?  Yes.  True? Definitely!

One of my faults is that I don't think I do enough around the house.  That I am lazy etc.  I know I do a lot.  I cook and clean and do the wash and food shop.  And pay some some bills that I can afford.  Plus work part time and take a class.  So I am not lazy but I worry that I am.  I've always felt that working at a job meant you weren't lazy and when you didn't work you were.  That was why I struggled with going out on SSDI for so long.  And sometimes I still wonder if I should go back to work full time (Then I spend a week sleeping till noon and realize why I am on disability).  But I digress.  Because of this, I feel bad when I tell P I slept till 11am, or that I stayed on the sofa all day because I was exhausted.  I feel like "ummm you fat lazy ass there is no reason to be exhausted, get up and clean or do something". 

But tonight he made me feel muuuuuuch better.

It's been a very busy couple of weeks between his doctors appointments, his father passing away, Easter, and school vacation (for those not in MA, the kids get a freaking week off of school for Easter break...sorry Spring break).  Today was the services for his dad so we were out all day long.  I was going to do wash Saturday or Sunday but I forgot.  When we got home today I sighed and commented I didn't want to do the wash tonight.  P said not to worry about it I was exhausted.  To which I replied "but I haven't done anything".  And he said the magic words "you do plenty and some things about how I need rest".  (Now I know some of you are thinking "he could have done the wash" but its my job, I like doing it because it makes me feel like I am pulling my weight and he knows that - see above paragraph about my insanity lol).  I can't remember what he said exactly anymore but I know I felt 1000 times better about everything when he said that.

So yes I do have the BEST boyfriend in the world <3

Saturday, April 16, 2011

Sex and Cf (PG-13...I think)

Such a taboo topic sometimes.  And I know many of us get all red faced and embarrassed when we talk about it.  But someone needs to right?!?!

Sex and having CF.  What does this mean for us? 

For me it meant no changes to my sexual behaviors until a few months ago.  I could do anything and not be hindered by my lack of lung function.  However, as I watch my FEV1 slowly decline, I see a decline in my tolerance with sex as well.  Such a bad correlation.  It's logical for it to happen but why must it?

P would probably and will probably beat me for postong some of this stuff, but I won't be graphic LOL. 

Sex for me now means no on top action.  If I decide to "take the plundge" I last about 2 minutes, though it feels like an hour, till I must roll over and practically die and let him do the work.  So lately I have forgone the attempt and just been the rag doll.  I HATE IT.  Not being able to be active during sex is one of the worst things ever (besides not being able to breathe which coincides lol).  You can still enjoy yourself when he takes the lead, but how many of us actually enjoy ALWAYS letting him take the lead?  We want to be in charge sometimes right?  Why must CF take that away too?

I doubt I am the only one out there who experiences this so the door is open, respond with your comments, but remember this is a public blog so please no graphic details ;)

Sunday, April 10, 2011

The Pity Look

You know that look.  When someone looks at you and you can see the pity in their eyes.  They cock their head to the side and shake it softly. 

I experienced this on Thursday when I went to see my PCP.  She is hard to get an appointment with since she is working only one day a week while waiting for the baby to come.  So I couldn't get in to see her but I got to see one of her team members (The place is HUGE but they are broken down into groups of 4-5 doctors so if you NEED to see someone and your primary isn't there you can see someone who is relatively familiar with your file).  I had to get some refferrals for upcoming appointments and also see about upping my anti-depressant dosing.  We were chatting and he listened to my lungs and asked how I was doing CF wise.  I told him how my CF doctor wanted me to meet the transplant team and gave him a brief synopsis.  That's when I got the pity-head-nod-stare. 

We also chatted about my depression, mood swings and irritablity.  We decided to try upping the Celexa to 40mgs a day instead of 20mgs.  So far I feel wonderful!  This weekend was the first weekend in MONTHS I haven't wanted to rip someone's head off and kick it across the lake.  Granted it was also the first real SPRING weekend we have had but we will see how this week pans out. 

What really impressed me was that my PCP called me later Thursday to check on me and make sure I was ok.  She had talked to the doctor I had seen and she wanted to just touch base with me.  She also promised to come in and see me on May 13th when I am there again for my follow up.  I really appreciated her calling me and I will be sticking with this place as long as I can!  I really liked her when I had met her before but this really solidified it for me.

Tuesday, April 5, 2011

IV Time

IV time we go, IV time we go, hi ho the dairy-o IV time we go

Yep I am almost 98% sure when I go back to see Dr D she will want to put me in and I think I shall agree.  My SOB-ness is ridiculous.  I wheeze so bad I think the girl next to me in class tonight heard me during the "lull" in the movie.  I've been walking MUCH slower than I normally do.  And I cough up goo almost all the time.  Add in some streaking and yeah its time!

My next appointment isn't until April 27th but I am calling tomorrow to see if I can move it up some.  Ironically I was supposed to go in tomorrow but thought it was too soon since she wanted to see me in 2 months and I had scheduled it for 1.

I orginally changed it because, yes, it was only a month, but also because I was trying to wait till classes were over before going in.  And I wanted to get my new laptop first too.  With the new laptop I can get homework done while in there.  But now I don't want to wait another month or so before getting this taken care of.  I'll just make sure I can schedule to go in on a Wednesday and be home on the following Monday so I don't miss any class time.

I have also been exercising daily doing Jillian Michaels no more trouble zones.  However, I can only do the 5 minute warm up and then I am exhausted and done.  5 minutes of straight cardio kicks my ass and I don't even do the jumping jacks!  I do use my O2.  The first few times I didn't just to see and my HR was hitting over 170!  So now it stays around 155-165.  With my O2 around 92%.  So not too bad.

One thing I MUST ask Dr D about is a port.  I will NOT go through that horror of a placement again like I did around Thanksgiving!!!

So I shall keep everyone posted.

Friday, April 1, 2011

The CF body

Have you noticed the typical CF body?  Skinny arms, wide chest, barely having hips.  Yeah I have it too.  And I HATE it! 

With bathing suit season fast approaching (though when you look out my window and see 3 inches of snow on the first of April you don't see how it is fast approaching), I went shopping for an updated new two piece.  I can't wear one pieces, they make me feel like a boy, seriously.  Unfortunately I haven't tried it on yet; I'm too scared.  I know exactly how I will look and I am dreading it.  To this day I still feel like one of those mal-nourished kids from Africa that you see plastered on the TVs all the time.  Skinny arms and legs and big, bloated bellies.  Only mine is up higher in my chest area, well an partially down in my gut too. 

I have no boobs (Victoria's secret stopped making my favorite bra years ago in my size from lack of consumer need - I've been told) but this HUGE chest.  Think size 14 bridesmaid dress and a dress sales lady trying to tell me I need a 4 not a 14.  I proved her sorry ass wrong haha!  But it has me very self conscious.  My chest is wider than my hips.  I can't wear any tops or dresses that zipper because they won't fit.  Anything tight looks stupid on me.  I feel fat and gross.  And I KNOW I am not.  That's what gets me.


And its not like it is something I can change.  I can't make my rib cage get smaller.  I can exercise all I want but its not going away.  When I put on weight it doesn't go to my skinny arms, it goes to my already bloated belly.  It's something I need to work on and improve. 

CF doesn't fuck you up enough it has to mess with your self esteem too :P