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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!!!!!!!
zoe282 Posted:

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

Wow! you have been through so much! I guess none of us know how strong we really are until we are put in a tough situation. Please try to hang in there and be strong for your FH. It must by hard and very trying sometimes but it sounds like you have a really strong realtionship and that will get you through....

kBr Posted:

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

i am so sorry youre going through all of this... you and fh are in my prayers hun.. we are always here to listen when you need us..
prncesjla Posted:

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

wow im sooo sorry your year sounds like it has been rough. stay strong!!
Sue and Danny Posted:

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

wow you are a really strong person ....i will pray for you and your FH

Have him continue with the doctor's orders and im sure he will definatly get better
MJDoc12 Posted:

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

wow....i'm so sorry that you have to deal with this.

only thing i can over is:
SparkyandAng Posted:

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

I absolutely read the whole thing and I am so sorry for all you are going through. I have this conversation with my cousin all the time. How come some people/families are hit with multiple devastation? It's beyond my comprehension.

I am really sorry and hope things get better for you very soon!!!!!
Bellez95 Posted:

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

wow planning a wedding ***** and to be going through all of this you must be a very strong girl!! do this wedding for you guys I wouldn't put it off it seems like you need this. Im so sorry you have to go through all of this. He is a lucky guy to have you!!!!

mariaobride Posted:

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

I just read what happen to FH - I am terribly sorry you are going through this and it hasn't been a good year. I don't know if you are spiritual or religious but if you are all I can say is have faith & pray. It is good that you & FH have a strong relationship and continue to stay on top of his medical visits. He truly needs you by his side and most likely if you weren't with him he would have never gone to the doctor. Many hugs & prayers sent your way.....
minibride08 Posted:

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

WOW for you! I am sorry that you are going through this... Be strong for each other and hopefully FH will continue to get the proper treatment he needs to beat this and be strong for the future....
MrsK2008 Posted:

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

sitting here with tears in my eyes I am so truly sorry to hear about all of your unfortunate events.
Please keep us posted as to your plans for your wedding and the health of your FH.
He is so incrediblylucky to have a woman who loves him they way you do.

best wishes!
FutureMrs.T Posted:

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

I sent you an FM. My mother has severely advanced stage of sarcoidosis and has reached the point where she cant be cured. Your FH has to take all the precautions the doctors are telling him. FM me if you want more details regarding sarcoidosis. I am sooo sorry to hear that you are going through this. It is not something that I would wish on anyone. However, there are a lot of great resources out there.

sassygirl9 Posted:

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

I'm sooo sorry you are going through this. I wish I could say something to make you feel better. My prayers are with you and him
dancinmyazoff Posted:

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

Don't feel bad at all for venting...I read the whole thing and I'm so sorry for this situation that you're in. It must be so hard to have lost those people close to you and to be going through everything with your FH. The situation that you and your FH are going through is just going to make you both stronger. He must be so appreciative for you and helping him with his sickness now...I will keep you guys in my prayers for a full recovery. If you need to talk/vent just send an FM my way and I'm all ears
catsgirl Posted:

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

I read the whole thing, i will pray for you, you are very strong. I will pray for your fh, I am so sorry he is going through this, i cant even imagine, keep your chin up, look to god, he really does hear prayer. if you need to talk fm anytime.
futuremrsfab Posted:

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

wow so sorry that you are going through all of this- if you need anything please fm me- but I will keep you and your FH in my prayers

Kimbalina Posted:

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

Wow! I did read the whole thing and I am sorry that you and FH are going through this.
You are an angel at his side, making him do what he doesnt but what is best. Stay strong!
anamaree77 Posted:

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

Yesterday was so horrible that I literally had a wave of depression come over me when I woke up this morning. I got some useful info from a fellow libride last night ((did I mention how amazing you girls are??)) and she was such a blessing and like an Angel sent down to guide me. I do believe in faith and God and believe that things happen for a reason and for whatever reason she was there to help me out and guide me, I am so thankful!

She was telling me how she has this same disease and how his latest bout of coughing may not be bronchitis after all but is definitely a Flare-Up of the Sarcoidosis. FH DID take his whole dosage of steroids last night and amazingly by the Grace of God, woke up today with absolutely no phlegm in his chest. It just makes me want to cry b/c he is like a totally different person today and if you saw him yesterday you would never believe this is the same guy who bounced out of bed and went to work today. It's just crazy ridicilous. It definitely makes sense now that he was 100% having a flare-up. She was sweet enough to get me contact info for her Dr. who I will DEFINITELY be calling.

I'm so happy today. I need my FH in my life more than I can ever tell you guys, he is my rock and my everything. I sound so corny saying this but we all need to appreciate the good stuff every day.

I'm getting some conflicting emails about this disease and the bad points, which scares the daylights out of me. Please keep Louie in your prayers ~ I know you all don't know him but he's the kind of guy that if a complete stranger fell in the middle of a highway he'd rush out there and risk his own life to save them.

THANK YOU SO MUCH GIRLS, you're the Greatest.
jessica08bride Posted:

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

wow, i read every word and i have to commend you on being so strong. good luck to you and your FH !!

mariaobride Posted:

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

skinny237 Posted:

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

Wow, I just read through everything too and am so sorry u guys are going through this. I'm glad that things seem to be going better today. We're all here if u need us!

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