Whinning Spouse

I want to apologize for this post before I even post it...but there is really no one who wants to hear me whine any more.

Another Saturday evening and DH is sleeping, feeling "unwell".  That's his terminology for "sick".  DH developed Crohn's during our first year of marriage.  It took several years for him to be diagnosed correctly, he's had numerous surgeries, lots of meds, prednisone dependent, currently on Humira.  Weighs a "whopping" 130#, has no energy and no muscle mass left.  He has two abdominal fistulas and has been told he needs surgery again and is currently mulling that over.  He really doesn't want to go through that again.  Last surgery/hospitalization was fraught with complications and was really a miserable hospital stay of 7 weeks.  We probably should have raised some hell over his care, but I was too afraid of what might happen next, ya know!  I know now that I cannot ever leave him alone in the hospital again.  But I digress....

DH often says this disease is harder on me than on him and tonight is really the first time I am thinking he might be right...although I will never tell him that.  Perhaps because deep down, I think I have always hoped he would get better...that HIS "remission" was right around the corner...that we might have a more "normal" life before life ran out.  But I know now that isn't ever going to happen.  We are in the Autumn of life and it "ain't" gonna change.  Could things be worse?  Of course.  My best friend from school is currently dying of Cancer.  (She was diagnosed with a "most likely curable", but "certainly  controllable" Cancer just over a year ago!  Sometimes, I think we would all be better off with witch doctors.)  But knowing that things could be worse is sometimes of little comfort as I am sure you are all aware. 

I know there are other spouses out there who have walked this road, fought the same battles, cried the same tears...I am nothing special.  But I am tired, DH is tired.  And yet, he/we continue to plug along, making light of the misery and spending the kids' inheritance on ostomy supplies and over-priced injectable drugs!  I am sure there is a purpose to all of this...but I sincerely doubt I will ever see what that purpose is. 

That which doesn't kill us makes us stronger?  Sounds good in theory...doesn't feel so good much of the time.  Does it? 

Off to find something to fill my evening with!  If you read this far, thanks for letting me whine...and sorry again for the downer of a post!

 

My wife tells me all the time......especially when I decide I need her NOT to cook and I will eat light.

I heard no whine in your post only words of reality. Everything that you wrote seemed reasonable and honest and the fatigue and despair that you express is honest and earned. He is lucky to have you and you have a right to be tired and to express your feelings. It has been hard on my wife when I was very sick and I have not suffered as badly as your guy has. my thoughts and well wishes to you both.

Rose481 we do understand how hard this disease for us Crohns sufferers, but we also know that it is hard for our loved ones to see us suffer too. I really wish that Healingwell had a caregivers forum, I think it would be helpful for you guys to have a place to vent also.

I cannot imagine my life without my husband. I know he gets disappointed sometimes as we never know what each day will bring. But he like you for your husband, loves me unconditionally. I do not think I would be doing as well as I do, if not for him. He is a true caregiver, and I love him so much and appreciate all he does for me. And I am sure you hubby appreciates you for your tlc. As for spending the kids inheritance. Oh well, I am sure they would rather have you two, then your money.

So whine away, we do all understand, as we tend to feel bad becuz of what we put our families thru too. And I know we would much rather have a normal life too. Hugs!

I can only imagine how my spouse is feeling. CD is tough, I am going through a flare right now, I am also pre-dependent, and on Remicade, plus pentasa, plus entocort, plus some temp cipro, plus immodium, plus all the vitamins. So yes, it gets tough, and I also weigh a whopping 128 pounds, but I still look heavy for my size. But people always ask me how I stay trim. I feel like saying get CD, but then I hold back and say strict diet (which is a big lie). Hang in there is all I can offer at this point in time.

I know my fiance feels like he is in the same boat and he didnt nor has he seen me at my worst that was my ex husband after he saw me go through 4 surgeries etc thi9ngs got worse than they had been he refused to let me see someone for mental help etc saying it was a sign of weakness so yes it was a good thing that came out of it but even now I have lost about 5 pounds (or more by now not sure I get weighed again Thurs) my appetite is coming back and he told me I better weigh 100 pounds again by the time I see my doc next month (that was last month) I dont think he "Fully" gets it yet where as he is diabetic and doesnt control it well the past few days I cant seem to get enough to eat then I have days where if I eat a can of soup I am doing good. He knows it is tough for me but feels badly he cant do anything really to help. being he is severely disabled as well (diabetes was secondary to his injuries in the gulf war back in 91) so he also feels terrible when he cant help as much as he wishes he could around the house I get help but it is from his teen boys and even though it is little knowing the thought behind it is gracious but still tough on me. it probably doesnt help that I also have been Dx with OCD soon after my CD Dx so little things get to me but I am better than I once was knowing I cant do things like I use to.

We are here to listen give advise vent etc sometimes I wish I could explain what I go through so others knew how crummy I feel some days yet still get along but I dont think many spouses get it until they have seen one at their worst and it seems you are in that boat and it can be very trying on a relationship. Have you thought about seeing someone to talk to about your stress in the situation? Maybe both of you join a local CD support group see what others have tried etc since he is mulling over options.

I understand the bill thing I still have the wound vac company telling me if I remained int he hosp for the full time I was using it it would have been 100% covered but since I went home I have to pay for it which makes no sense to me pay for all the hosp fees when a visiting nurse can do the job once every few days...and my ostomy supplies were not covered mby my ins that I had then either I have since had it reversed but keep the supplies fearing if I rid myself of them Iw ill need them again might be wishful thinking but took me 20 yrs with this DD before needing Sx.

Could you see about having placing him on care (not sure where you llive) but something along the lines of medicare and medicaide? I know wothout them I would be up a creek without a paddle since my CD meds along (script not otc ones i need or other meds for asthma etc) are 70,000 a year I am lucky and I pay about 250.00 a year if that.