how much frustration can a sick person take?

As I’ve alluded to before, one of the organs that sarcoidosis attacked is my digestive system. I was found to have granulomas all over the lining of my belly (peritoneum) during a laparoscopy to fix a hernia in my belly button caused in part by the severe bloating. Two years ago I was scheduled for all kinds of tests- two gastric motility studies, intestinal motility studies, colonoscopy, and finally neurologic evaluation and more testing. The results were abnormal, and putting everything together over about a year, the thinking became that sarcoidosis attacked my nervous system (neurosarcoidosis) and particularly the autonomic nervous system which regulates things like digestion and blood pressure. So I was started on some mild medication (Miralax) to get things moving, and the hope was that treating the neurosarcoid with IVIG infusions would improve my digestion.

Well, that was the hope at least. Over the last year this problem has continued to worsen, slowly and almost imperceptibly despite months of IVIG. However, in order to attain minimal basic GI function, more and more medication has been added to my regimen. In fact, what I am taking would make an elephant evacuate it’s entire belly at once! They told me to stop the Miralax as that could give me the runs when combined with all this other medication. But, see, I am an intestinal wonder. Nothing happens. So the Miralax was reintroduced into my morning coffee…

I didn’t exactly go through these two years without complaining. After all, bloating so much that you pop hernias (even with my mesh repair, it recurred again!) is not exactly comfortable. So they referred me to the motility clinic at my revered institution, but it turns out that this clinic was not taking new patients! (Really?? this must be why they call us “patients”-pun intended!) So I waited patiently and was pacified by this and that change of medication, promise of the new infusion, etc. Finally, word came about nine months ago, that the motility clinic was finally taking new patients. I called immediately and was told, “no ,not yet-call next week.” This I repeated weekly, then monthly, for about 4 more months, and then I was told that my record had to be reviewed before they could schedule an actual appointment, and, yes, it was in the process of review. (In case anyone is wondering, this is at Johns Hopkins where my husband works as a nurse!)

More severe discomfort, inability to tolerate meat, reducing my intake to easily digestible foods, and finally, not eating anything solid until early evening almost daily, got me pretty crabby to say the least. I started to kvetch to my GI doctor to beg him to try to get me into the famed motility clinic. He did, and he got me to see the best physician they have, and my appointment was finally yesterday, after almost two years of suffering.

And this is how it went…

It was a joint appointment between the famed GI motility specialist and the colorectal surgeons (who I thought were supposed to be a secondary consult). I was greeted by a very sweet female surgeon with an excellent bedside manner who did not know anything about my history, proceeded to do a very embarrassing exam, which I was completely unprepared for psychologically. The famed motility doctor? Well, I think she might have said hello under her breath, came in for the exam, said nothing and left. The surgeon finished with me by leaving a nurse practitioner to show me a 5 minute video about a product that might help me if I was interested, and scheduled me for some biofeedback therapy. I was told that at my age, this is a common problem and 90% of women get better with biofeedback!

What??? Do all those women have neurosarcoidosis with granulomas all over their belly??? I took this photo yesterday at 4PM after having only 2 cups of coffee all day and no solid food: (It’s like being pregnant again, hard to breathe, feeling full all the time!)

My primary care doctor was also a bit surprised, but together with the neurologist, it was decided that once again I needed to jump through all the hoops and many more months of lollygagging, just to say for certain that this is due to sarcoidosis! The problem is that now I am so sick that I don’t go anywhere unless I have to. I don’t get up to do much until about 4PM most days, which is when I feel better from the brain fog and bodily exhaustion. So how am I going to tolerate frequent visits to the hospital for physical therapy-a 45 minute drive??? Not to mention all the car accidents I’ve been having from the brain fog!

No, I’m not ready to have a personal caregiver by any stretch. If I have an appointment or errand, I will will myself to do it. Just like I was trained when I was a general surgery resident, to do things with lack of sleep, to work hard despite a fever,etc. My will overcomes my bodily discomfort. But is this fair???

I honestly am too fatigued to fight the fight. I put it in the hands of my wonderful primary care doctor who I am literally blessed to have. And they scheduled me for biofeedback…and the strange, expensive device that I’m sure I must be the youngest person that ever used it!

And THIS is what chronic illness is all about! Not fun!

Keeping up the sense of humor and pushing on with my many distracting, creative projects,

M