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Trying not to crack ~ Sorry ~ A little long.....

Original post by anamaree77

I just have to get this off my chest, it may be a little long....sorry in advance. After me and FH got engaged, we came home from Jamaica super-happy and excited. Let me just say that we have been through ALOT together and overcame so much, spent so much time defending our relationship, but it was all worth it.

Within a few months of being engaged, FH developed a nagging cough and allergy problem that continued for a couple of months. Eventually, it got to the point where FH would be out of breathe going up a flight of stairs to the point that he was gasping for air ready to pass out. Despite my constant nagging for him to go see a doctor, boys will be boys, and he waited until last May to even go to his regular MD. Immediately upon listening to his chest, he ordered a chest x-ray which pretty much showed what looked like pneumonia all throughout all lobes of his lungs, which the Dr. told us was impossible. He scheduled FH for a CT Scan which came back showing that FH had Metatastic Cancer and needed a biopsy ASAP. My world was CRUSHED. As some of you know, my dad died of Lung Cancer and it was like reliving my worst nightmare.

At this point, FH digs his heels in and refuses to go for the Biopsy. He pretty much tells me that if he has the Cancer then he will have to start some really serious treatment and he refuses to do anything until we go to Florida for a few weeks so we can at least enjoy some time together and after all, we may never get the chance to do it again. So what choice do I have, we book the plane tickets and take off to Florida. In the meantime, FH's dr. calls and advises us that this is completely against his orders and FH only has 40% lung capacity.....I can't even come close to telling you how heart-wrenching this whole trip was. Every time FH would turn around, my eyes would well up with tears. I literally had to lock myself up in the bathroom every half hour or so and burst out hysterical crying, it was agony.

SO, we come home, schedule the biopsy and literally hold our breathe for 2 weeks for results. THANK GOD it turned out that FH did NOT have Cancer and the radiologist was wrong. What he DOES have is Sarcoidosis ~ most of you have probably heard of it as the disease that a lot of people from 9/11 are getting. It's just all over his lungs and he has a really severe case. There is no Cure for this disease. It will either eventually get better on it's own or get worse until it takes over his lungs and he dies. Talk about a double-edged sword, 'No you dont have cancer but you have this horrible disease that leaves you out of breathe and coughing and by the way, we can't do a damn thing to help you!'. UGGGHHHH I just get so mad sometimes when I think about it.

Anyway, so fortunately, if FH takes steroids it can help him breathe easier and reduce side effects of the disease like permanent scarring to his lungs. FH starts steroid and becomes an irrate lunatic, it messes up his whole personality and puffs up his face and body where he doesn't even look like the same person anymore. It leaves him feeling sick and tired and crabby all the time but you know, I really don't care. If that's what it takes to have him here with me then we'll get through it. Great, right??

Wrong....it never ends....FH decides last Sunday that he doesn't want to take the steroids anymore and throws them away. By Wednesday he is coughing up so much phlegm and blames it on that 'he has a cold'. Finally FINALLY today, 7 DAYS LATER, I drag him to the dr. and turns out it is a side effect from coming off the steroids!!!!!!!!! Doctor puts him back ON the steroids so that we can ween him off properly and now he has to use an inhaler which he hasn't needed in months. He can't get comfortable b/c he can't get enough air from all the phlegm trapped inside his lungs so he has to lay face down off the bed with me leaning over him pounding on his back trying to help him get some of that phlegm out of his lungs. I know it sounds comical but it's not, it's just gut-wrenching and I can't stand to see him sick and hurting anymore. I love him so much with every piece of my heart and this is just KILLING ME!!!!!!!!!!!

Again, like I said, sorry this is so long.......this has been a horrible year for me. ON top of Louie getting sick, it was the anniv. of my dad's death, his Grandfather passed away in July and my poor Uncle passed away this past month of a Brain Tumor and left behind his wife and my 3 beautiful cousins. Life is just so unfair and I had to get this out b/c I can't break or break down and I have to be strong for FH.

I hope none of you really sat here reading this whole thing, it's so depressing. I have thought about putting my wedding off for a year, it's so hard to be motivated about it with everything that's going on. I'm just afraid....and I hate to even ever think this let alone say it....but if he gets worse, we may never get this chance again and ..........

I need a glass of wine. lol.

Sorry Girls!!!!!!!
AR31 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

Omg.. I'm so sorry to hear this.. it's hard to watch someone you love suffering so much.. but and I know you've probably heard it a million times to be strong.. you've truly exemplified love and caring at it is best..
such moments will pass.. and your FH will get better.. and everything will be ok.. it always will..
dream426 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

You are such a strong person. I am so sorry what is going on with you and FH. It is not easy. We are hear to listen so any time you need to talk just let everything out.
cbcf Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

I am soooo sorry for the situation your fh and you are in as well as his children!!!

I will keep you him and your families in my prayers!!!! I do not know much about the disease but I hope he does all he can to help fight it and stay strong. And you are such a wonderful person for being there for him and keeping strong. You say he is your rock but I am sure you are his. And staying strong for him will definitely help him!!!!!

I do not know much about the disease but I heard this disease could be caused by mold??! And if it can you should get wherever you live checked out for mold! If you have mold in your house it could be making it worse?!!! Like I said I dont know much about the disease and I dont want to worry you even more just giving info that I heard before.

Keep strong!! And we are always here for you to vent!!!!!!!
staceycostigan Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

I also read the whole thing and I can only say I am sorry as well... I hope everything works out for you... I am sure that all of us are praying for you and your FH.... No one should have to go thourgh all this heartache when its supposed to be the happiest time of your life...
truelove5803 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

joshisgirl Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

wow, i did read through the whole thing and i'm amazed at how strong you are! it must be so frustrating to have to deal with the whole illness but then have to deal with someone who is stubborn as well. he's REALLy lucky to have you!!
JeanetteandSteve Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

please don't ever feel bad about letting out your feelings. i am so sorry you're going through all of this, but you are obviously a very strong person and just keep the faith that he will get better. i believe you get back what you put out...and from your post i can tell what a good person you are. your FH will get through this and when he does, he'll appreciate you so much for being who you are and helping him through it.

mandag Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

Hang in there. My thoughts are with you and I'm so sorry you have to deal with this!

AJJ1234 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

I read the whole thing and my heart goes out to you. Stay strong!

AMGBride2008 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....


for you and your FH
Cutechef729 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

I'm so sorry!!!!! You are really supportive of FH even though it must be hard for you! It's so sad that you are having a hard time right now! Just remember that sometimes you need to let it out and that is ok! For now,
LeeLee111 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

God bless you and your family, I'm so sorry you're going through all this. I will keep you in my thoughts and prayers. We're here if you need us
colleen1117 Posted:

Re: Trying not to crack ~ Sorry ~ A little long.....

Just wanted to give . I don't want to re-state everything thats already been said. Remember to rely on your faith! and DOWNLOAD here without apology when ever you need! Please keep us updated

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