Thursday, April 15, 2010

Small Victories, Big Questions, Simple Joys

Those of you who have followed my blog from the beginning and those who know me well are aware that our family spent a few really rough years struggling with Bubba's health. For nearly three and a half years he was stricken with a mystery-disease that legions of experts, armed with millions of dollars of modern technology and medical training were unable to diagnose. After a $55,000.00 surgery that took eight hours and twelve weeks to recover from, he had a relapse and we were able to finally find a doctor who accurately diagnosed the situation and began treating Bubba with medication to 'buy us time.'

Fast-forward eighteen months after Bubba began taking the medications that effectively stopped him from having relapses and, for some unknown reason, he decides to quit taking the meds. They were expensive, but our insurance plan covered them entirely. They caused him no physical side effects whatsoever but he decided that taking three pills three times a day as a 37-year old man made him feel (emotionally) "ill. Old and infirm." His words. Not mine. These magical purple pills made me feel free. Free from the ticking time bomb that he had been for over three years - never knowing when we'd have to call 911 or when I would get a panicked call from him on a business trip in China (happened before) or Prague (there, too) or Argentina (yup, you guessed it) as he felt it coming on again.

If you want to read all of the ugly details, you can find them here

Suffice it to say that I was furious, frightened, and confused about his decision to stop taking his medication. I told him I thought he was nuts. I begged him to go back to the doctor first and run it by him. I pleaded with him to explain it to me. I tried to guilt him into taking them again by telling him how terrified I was. Nothing worked. He shut down and stopped talking to me about it and a lot of other things, too. I went into turtle mode, pulling myself into my mommy shell and went about doing the things I knew I could control (HA!).

Six months after he stopped taking his medication I noticed a lump on his abdomen. It was so large I could see it through a t-shirt when he was standing in profile. It resembled a small bratwurst and lay directly over the area of his stomach/small intestine that was affected when he was having attacks - on the right side of his stomach just below his rib cage. I pointed it out to him and he swore it was nothing. A year after I first noticed it, it hasn't gotten much larger, but it has grown a bit and it's definitely still there. He maintains it doesn't bother him a bit.

Now, for the "Small Victory" part. We had grown so far apart due to this and other factors that I asked him to go to a counselor with me to see if we could put things back together. He agreed. Small Victory #1.

At the counselor, the issue of his health (and my view that he was generally disregarding it) came up. After a thorough history of the situation, the therapist felt that the best thing to do was for Bubba to go back to the doctor who diagnosed his condition and let him decide. She asked me to prepare myself for the possibility that he would acknowledge that Bubba was doing fine off the meds and let it be. She asked Bubba to prepare himself for the possibility that the doctor would smack him upside the head and order him right back on them. We agreed to go together and abide by the doctor's orders. Small Victory #2.

We went last week. I'm thrilled that I was there because Bubba, as per usual, minimized the issues and wasn't even going to point out the lump on his abdomen ("It doesn't hurt!"). The doctor was shocked that he had stopped taking his meds and his eyebrows disappeared into his hairline when I described the growing lump. He asked Bubba to lift his shirt for an exam and quickly determined that the lump was an enormous hernia. Somehow, a loop of bowel has pushed out through the peritoneal wall and the muscle layers in Bubba's stomach and is protruding. He cautioned that it doesn't need to be operated on immediately, but it does present a problem if the bowel twists. In that case, Bubba needs to hit the nearest ER and have it repaired immediately or he'll go septic and die.

For Big Question #1. Is inflammation in Bubba's intestinal wall (caused by him going off his medication) pushing this loop of bowel out through his muscles instead of shutting down his digestive system like it did before? Well, apparently, that calls for a CT scan. Bubba went happily and we won't know anything for at least a week, but at least he went.

I hate to say "I told you so," and I am tremendously pleased with Bubba's response to the 'experts' (in this case, the therapist and his doctor), but I wish it had just been simpler. A "go back on your medication, you knucklehead" would have sufficed. But maybe, just maybe, if this was all caused by him going off his meds, that's the knock on the skull he needs to turn things around.

As for the simple joys, there are so many, I'll have to do them in list form:

1. Bubba was not put out by my joining him at the doctor's office and scheduled the CT scan so that I could be there for that, too.
2. Traffic on the way to the hospital this morning was an absolute breeze and my parking was free.
3. The CT scan took place exactly on time and we were out with enough time for me to get home and vacuum up the tumbleweeds of dog hair before a friend comes for coffee this afternoon.
4. The sun is out and my tulips are blooming in the yard.
5. I have today and tomorrow off of work and I'm going to write, walk the dog, clean the house, and read.
6. There are beets roasting in the oven for my lunch and I'm going to toss them with some fresh spinach and goat cheese and drizzle them with balsamic vinegar. Ahh, chick lunch.

6 comments:

Carrie Wilson Link said...

Yea!

Yea!

Yea!

Isabelle said...

My dearest friend. I just wish I could give you a big hug and just be there to support you. You are such an example of love, compassion, strength and courage. As you know already, everyone has a different approach to dealing with medical diagnosis and therapy. Some are just too hard to comprehend and I can only admire your loving understanding of the situation and your strength at finding a solution. Having been several time to hematology/neurology with my daughter, I can just tell you that I have never seen so many brochures, signs and cards for personal and couple therapy. It is literally covering the walls and on every table. As you know already, I spend a lot of time and energy looking for possible medical diagnosis, but I use at least as much strength and efforts trying to explain the situation to my husband and seeing his point of view. It is not always easy and it is certainly exhausting. Talking to other friends dealing with serious diagnosis and health issues, most of our discussions are more around our personal acceptance of the situation and the impact our decisions have on us, our spouse and the family. Just know that you have friends who love you and are there for you.
With love,
-Isabelle

Deb Shucka said...

I am so glad to hear there's progress for both you and Bubba. I know it's been a tough go for you. Sending prayers for lots of healing to continue happening. Love.

megan said...

Give Bubba a whack upside the head for me. Tell him if it were me It would have been harder! :P Enjoy that big sigh of relief. Wishing you two many years together and many more moments of joy. Ewe..that sounded like a greeting card. You get my point.

fullsoulahead.com said...

Wow. That is a lot to be dealing with/worried about.

Glad you two went to the counselor. Wishing you both the very best.

Miss Devylish said...

Wondered how this was going. Bummed that it took so long to find out, but glad to hear it's overly positive and Bubba's stubbornness didn't stick. Hope he's much healthier now sugar.. sending hugs and love. xo

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