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.

When you loose someone with CF, its like a rock hitting the water

Yesterday we lost 2 CFers.  Both young.  I knew one of the women, but had only heard of the other.  Either way, when a CFer dies, it hurts.  And when you think how healthy they were and how they declined so rapidly, it scares you.

Right now, I am healthy.  I may have days that I feel like utter shit and want to crawl into a hole and die, but for the most part I feel fairly good.  I can function fairly well, I can do house work, I can socialize.  These are all good indicators, to me, that I am well.  But I worry about THAT infection that could knock me on my ass and leave me helpless, or even worse, dead.

This has happens with quite a few CFers.  Fairly healthy, chugging along and then WHAM! That infection hits and they are super ill, hospitalized, vented and sedated.  And then the worst happens, they pass.  These people that were up and "running" around just 6 weeks prior are now laid to rest.

Its truly scary.  When that happens you see yourself, you see you in their place.  Healthy and then sick.  Happy and then dead.  That is the uncertainty with CF.  You just never know when you will get the infection that could kill you.  It still hasn't sunk in with me and I try not to think about it at all.  But it is hard when you watch someone go through with it.  When you watch someone with the same disease as you decline and pass.  You can not help but think about your own mortality.  It's inevitable.

And in a way it makes you treasure and value everything you have even more.  I stood on my back porch today and looked around at the blue sky, the bright sun, the green grass and my amazing boyfriend and felt so happy that I was there, where I should be.  We spent the day out and about enjoying the 85 degree weather, with the top down on the jeep, driving to the beach and enjoying pizza and ice cream with his daughter.  I treasure these days because one day, I will be like the above mentioned and not be able to talk, walk or function.

Don't forget to treasure your loved ones too, and appreciate just what it is that you have in life!

Paul's Memorial Services

Yesterday was Paul, Q's memorial services.  They were really nice.  We met at the cemetery first and had the burial ritual done, then we went to Boston College for the Mass and reception.

It was wonderful meeting Paul's parents and his mom is absolutely adorable!!!  She knew us all by name and by screen name!  I was totally amazed!  She even knew who Peter was :)

It was great finally meeting quite a few of the CFers I chat with online, and have been for years, but have never met.

Here is the picture of all of us outside the reception hall and chapel on Boston College campus:

and here are pictures of the pictures the family had of Paul.

It was a great service and I was very glad to be a part of it and celebrate Q.  Much love in Heaven Mutant Q!!!!