I'm sick

And I don't mean normal CF sick, I mean virus, fever, on the verge of throwing up sick.

Right now I can't sleep since I slept till 12:30 and I don't want to watch TV, so I figured why not blog from my phone.

It started last night. I just felt off, but not the way I have been feeling since I started the Cipro, it was a different off. Then all through the night I was having weird dreams and one I even got sick and I woke up in a panic thinking I had vomited in bed. Luckily all I did was drool a whole bunch (man I'm sexy haha). And it is just getting worse as the day progresses. I now have a fever of about 100, which no isn't bad but I spike fevers at night so I can only imagine what it will hit tonight. I'm not going to take any Motrin until I need to because I don't need to mess up my liver/kidneys more than they are already.

What made me want to blog was not to tell you all I am sick, but to ponder some things. What do you do when one person in your relationship is sick and the other isn't? I've never lived with a man before, at least not sharing a bed-wise so I'm not sure protocol. Do I sleep on the sofa since he is the bread winner? Do we continue to share the bed since he has a great immune system? Obviously I'll ask him when he gets home but for now I just lay here thinking.

If I don't feel better by tomorrow I'll be sending him off to NH with the kids without me. We have had this planned for a while and have had to postpone it a few times already. I don't want them to miss it again just because of me.
Sent from my Verizon Wireless BlackBerry

O2 stats in the toilet!

As my doctor has told me to yesterday, I started monitoring my O2 throughout the day.  I used to be really good at this but I have slacked off int he past few months.  So today I hung my oximeter around my neck and got to work...on cleaning, laundry and food shopping.

Cleaning - not bad, never dropped below 91%.  Granted I did it all immediately after my morning treatment.

Laundry - right along there with cleaning.  I still have some clothes in the dryer I need to fold, but my back ache is more troublesome right now than the lungs.  I just did my nightly treatment.

Food shopping - of course the public chore is the one where I dipped below 90% and stayed there.  I averaged around 87% the whole trip, dipping down to 81% when loading the bags into the car.  I didn't even check after carrying them in the house...I was too nervous.

She told me if I get below 90% with ANY physical exertion I need to wear my O2.  Does this mean I need to lug my O2 with me to the food store?  I will have to go in public with tubing on my face?  My CF won't be hidden anymore?  I will be able to park in handicap and NOT look like I am lying?

As I sat in my car after loading it up with bags and trying to catch my breath, I thought of what she had told me, and then I thought that I will have to wear my O2.  And then, the tears came.  Just a few, nothing hysterical, but they came.  I'm 29, I don't want to wear the O2 in public and shout to the world that I have a horrible lung disease and it is kicking my ass.

Call me wussy, call me a baby, but I don't wanna!!!!!!!!!!

Clinic appointment

Well today was the day.  All went fairly well, about what I had expected.  I am free from lock up for 4 weeks, but will most likely get thrown in beginning of July.  Dr D agreed to a 2 week course of oral Cipro to see if that brings me back to base.  I was 36% FEV1 when I went in which was down from 42% three months ago.  They had me do an albuterol treatment and I was back up to 43%.  That's a 19% increase in capacity after 2 minutes of albuterol and 15 minutes waiting for it to spread.  Which means after 3 hours with no treatment I dropped that much.  It's craziness!!!  With all of my other symptoms being stagnate where there are, Cipro is a decent option. I usually respond fairly well to it, so **fingers crossed**.

She said if I am not feeling totally fabulous when I come back then she wants to do a clean out.  Especially since it has been almost a year since I had my last round - October.  The shortness of breath and increased cough/sputum production warrants a clean out, and a strong one if Cipro fails me.  If I do have to go in that is fine, as long as I am out by July 17th for a friend's wedding in PA.  I will not miss it!  I don't care if I am on IVs still but I will be there!!!

For the rest of the visit: my blood pressure was a little off.  I was 133/73 which is different for me.  I am usually 110/90 ish.  My O2 was 92-93% which is fairly normal.  She told me to make sure I check my O2 throughout the day and if I see it below 90% at any time I need to put the O2 on.  She doesn't want me to mess up my heart.  Understandable for sure!  I also had a chest xray done.  That was an experience!  I am used to waiting in the waiting area to be called but at Brigham's they take the CFers right into a changing room and then into the xrays.  It was awesome I didn't have to wait more than 10 minutes!!  And that waiting room was PACKED.  I told her about the lactose intolerance and she said I can have a test done to prove I am but considering I feel much better since I have cut out lactose there is a good chance I really am and no need to have it done unless I want it.  Works for me!!!!

I am still getting used to my new clinic.  It is a total 180 degree change from Presby.  Children's hospital versus adult.  Female doctor versus male doctor.  Everything is brought into your room versus having pfts and vitals done in different rooms.  Taken right to a room versus waiting in a waiting room.  It is all so strange and new to me.  Luckily I felt much more comfortable with Dr D this time.  I think we bth were feeding off each other in March...me being nervous seeing a new doctor and she feeding from my hesitations etc.  I really liked her this time and am glad I chose to come to Children's.  Once I have been there for a while I am sure my hesitations and awkwardness will fall away.  Its very strange switching doctors after 25 years.

So all in all not a bad day.  I avoided being thrown in for now and although I have to avoid the sun for 2 weeks, at least I can still enjoy the sun from under my big floppy hat and lightweight clothing!

Maybe no IVs

Funny....I spent the last few posts complaining about the increase in SOB, fevers, exhausted, overall feeling crappy and then this week....I feel fine. No fevers since Tuesday, sleeping much less, cough is less junky and I overall feel better. Yes I am still SOB, that can not be denied. But it isn't as overwhelming as it had been.

Nope I have not changed anything. Only difference is my hour a day in the sun. But I highly doubt that would decrease sputum production and cause my fevers to disappear. I can see it giving me more energy though, so we can "blame" that on the sun.

My appointment is still this coming Tuesday, the 1st even though I still have no insurance. Basically I'm going in, getting done what I need and having them send me a bill. When my coverage kicks in I'll send the bill to them, bastards, making me wait. I'll be sure to update on that Tuesday afternoon!!!!

Take care my readers and enjoy this Memorial Day weekend. But PLEASE don't forget the true meaning of this holiday. Remember the soldiers, veterans and those deceased. God Bless them all and keep them safe.

CF Belly

this is what it looks like....a little smaller than earlier today but I still look like I have a basketball under my dress haha!!!!!

How do you know it is IV time?

...you need to wear a diaper when you cough!

LOL

Yeah I have graduated to coughing and peeing.  Fun stuff.  But a definite sign that IVs are in my future.  Now to get the health insurance fiasco figured out!

I got a letter from Medicaid yesterday telling me they received my paperwork for disability and it would be 90 DAYS until a decision was made!  WTF?!?!  So I called and yeah, 90 days till I will be able to get insurance.    I called my social worker at Children's and we are going to figure something out because there is no way in hell I can survive another 3 months with out a check up and with out meds.  I am already in need of IVs, so 3 more months might find me completely helpless.

My lungs hurt so bad I want to swallow a bottle of Motrin and hope it all goes away.  And today, while peeing a little and coughing I just about threw up.  I am good at keeping it down when it gets to that point, especially when I am in public, but let me tell you how hard it is.  And of course, it is also another sign of the IV need.

LI, that would be me!

Well it seems that my little experiment in Lactose Intolerance has paid off.  It is safe to say that I am just that...LI.  I have not had any lactose milk in a few weeks (besides a gulp here and there to swallow my pills when we are out of the lactose free kind) and I have avoided ice cream.  My reward, I have not been bloated AT ALL!  Seriously!  My stomach has stopped looking 6 months pregnant and I actually look like a CF patient again!  Not that it's an entirely good thing to look so thin, but I am glad to feel comfortable and be able to eat and not worry about blowing up!

On the down side, I need to start taking Miralax to help move things along.  Apparently being LI helps keep the digestive track flowing, and since I haven't had lactose in weeks, my body is a bit full.  I would explain but that might be a bit TMI for such a public blog.  :)

So I can safely give my results to my CF doctor if I ever get there!!!  I don't know if there are any more tests they will need to run to make sure, or if what I have done is sufficient.

Keeping in line with this, I have been running very low grade fevers at night.  When I say low grade I mean it, usually right around 99.5 highest being 100.  Nothing concerning really and I take Motrin anyway for my back pain at night, so that also gets rid f the fevers.  During the day I don't have them, only at night.  If I remember correctly, last time I was getting fevers only at night I went into the hospital soon after they started for an infection.  So I am hoping a full on infection will wait a few weeks until I can get my health insurance.  Then I can do whatever.  I am fine with all my meds, so at least I can't try to fight it own my own.  But I can't add anything new so I have t hope that it will dissipate on its own...yeah right cause CF infections do that!

My brother is a free man!

The best news I could have gotten (besides getting my SSDI approved) was that my brother tested negative for the Cancer Gene!!!  Lynch Syndrome, hMLH1 is the mutation.

again here is the post explaining it all.

Funny, my brother sent me a text message to tell me (he is working albeit with my dad) and it said "God must have been in a bad mood when he made you cause I don't have the gene, you got the short end of the stick".

I was so happy I almost cried!  My niece and nephew and any more babies they may have are in the clear as well.

You might be thinking "aww poor Amy, she has this", but PLEASE DON'T.  I don't want pity, I don't want to  have anyone feel sorry for me.  I am glad it was all placed on me and not my brother.  A lot of Cystics feel this way about getting the disease over their siblings.  It has nothing to do with feelings that the other could not handle it, but rather that they don't have to deal with it.  I am much happier having my brother live a normal life and have me be screwed.  It's something I just can't explain.  Plus I don't think I could live with watching my brother die.  I don't know how my brother will do it, and I try not to think about that.

Is it selfish to say that I am almost thankful that I probably won't have to watch my mom, dad and brother pass?  Because if it is then I am guilty of being selfish :)

Same goes with this whole hMLH1 gene.  I am glad that I have it and have to deal with the testings for it rather than my brother, who most likely would not have had them done anyway LOL.

Let the CF end with me, and let the Lynch Syndrome end with me as well.  Granted there are 5 other siblings of my dad who have has polyps and/or cancer and that also have kids, so it might not end with me entirely.  But it's a start with me and my brother!!!!!

Ok don't shoot me yet

Well I am feeling much better today.  I called all my creditors yesterday and was able to move my payments back a month or two.  Luckily my car payment was already payed through June!  Apparently all those extra payments paid off haha!!!

And the best news:  my LTD company called me today and I was approved!  Thank freaking heaven!!!!  He said I will receive my first payment next week sometime.  So I won't be totally broke for too long.

Now if my health insurance would get approved.  I have been approved for hospital benefits so if I have an emergency and need to go in the hospital I am covered.  As for as medications go I am ok with them.  Once I get paid I can get most of them at Target with their $4 generics.  They cover most of the meds I take and I usually only pay $4-10 per med.  The few that aren't covered I can survive a few weeks without (yes no worries I can).

Depression-wise, yes I still am.  Just getting the LTD helped a bunch, but I still need to talk to my doctor when I go about upping or changing my anti-depressant.  Since I have to push my clinic appointment back yet again, it may be a while until I can get this figured out, but oh well.  It will happen eventually!

Thanks for all the support my bloggy friends!!!!!! :)

Spent, done, take me out back and shoot me please

I don't even know where to start.  I am so unbelievably depressed right now.  I sat at my dining room table looking through papers with the hood on my sweatshirt up hoping it would help hide me from the world.  All I want to do is go to bed and never wake up.

I got more papers in the mail today to fill out for MassHealth.  I still don't have health insurance.  My next appointment is Tuesday the 18th.  I emailed my clinic to see what they think since I have already cancelled once.  I need to go.  I haven't seen a doctor since March 17th and I need to soon.  I have so many questions and things I need to up.  I am running out of meds too and I need refills on some things that I can only get with insurance since they are too high to pay out of pocket.

I signed into my bank account to check on my funds and I am negative.  I transferred over the last $150 from my savings and now I have $42 to last me until I get approved and paid for my long term disability.  I have to call my 2 student loans, credit card and car loan companies tomorrow and tell them I can't pay.  This is the first time in my entire life I have had to do this.  I saw the red balance and I started bawling.

I can't buy food, I can't pick up my prescriptions, I can't get gas for my car.  I am stuck.  And I can't ask Peter to help me.  I already live here free of charge how can I ask him to pay for my things.

Then just to add to the mix, I keep getting a bill for my $50 copay on my last appointment in March, which I paid that day.  I sent the receipt into Children's to show I paid and then today I get yet another bill!  I called all last week because I had gotten one but couldn't get through.  Today I did get through and what do they tell me?  They have no record of me sending in the receipt!  Seriously?

On top if this I am pretty sure I am lactose intolerant so I am trying to change that part of my life style.  And my depression is rearing its ugly head again so I think I need a different med or an add on.  None of which can be done until I see my doctor and get insurance.  I can't stop crying and I can't wake up.  I hate depression and I hate CF.  Life was easier when I worked and I know this was for the better but as I look at my negative bank account and the lack of insurance I wonder if it really IS worth it.