If you deal with a chronic health issue, you probably have experienced this feeling before: You wake up one morning, and you are feeling pretty good. Perhaps part of your mind goes to "This is the day when I am going to finally beat this!", but by the time dinner time comes around, you are back in bed, wondering why you ever even had any hope at all of your illness suddenly disappearing into the night.
When we were driving down to Baltimore on Wednesday morning, the whole notion of a downpour and clearing skies came to me when I drove right into a tropical-like downpour on the NJ Turnpike. One moment, the skies were fairly clear - the next, you can barely see a few feet in front of you. The rain was essentially taunting us - once you thought you were out of the blue and the skies were clearing, it would start raining again. As Colleen knows, I am not a big fan of driving in the rain, the snow, the fog, or even if a mosquito flies on the windshield. If conditions aren't perfect, I just want to stay alive until they are.
These are the types of conditions people with chronic illnesses face in their every day lives - a massive rainstorm that can last for days on end, followed by a brief clearing of the skies, before another rainstorm rears its ugly head, leading to you even forgetting that you even had a few hours, or maybe even a day, of peace. The roller coaster a chronic illness can put you on can be dizzying - and, more to the point, downright cruel. It can be like a downpour that leads to a flood that sweeps your car away, only for you to be rescued - than repeating that same scenario over and over again. Eventually, the rescues begin to lose their effect - you don't want to be temporarily rescued anymore. You want the floods themselves to stop.
Once again, the trip to Baltimore was a long one, but a fruitful one. Our experiences with Dr. O'Brien-Clarke have been nothing short of fantastic. He actually listens to everything you have to say, talks in a very clear tone, and even is willing to accept and consider all options you throw at him. Although he certainly is the biggest expert in the room, he doesn't shoot you down just because he has a fancy diploma on his wall. I will get to more on that in a moment. Experiencing this doctor and the staff as a whole just leaves you speechless - the entire operation is run like a well-oiled machine. While some hospitals and medical establishments on a whole use the "get them in, get them out" protocol, that does not happen here. He talked to us for at least 45 minutes or so, clearly explaining what he thinks could be going on with Colleen, while also allowing Colleen to actually talk about what is actually going on with her.
Colleen is a naturally nervous and anxious person - she needs a doctor who puts her at ease, and doesn't attempt to make her think that what she is experiencing isn't real. The last thing a patient wishes to hear from any doctor is that everything is in their head - that they can't help you because YOU are, in essence, faking your illness. The last thing anyone with a horrible illness wants to do is travel hours on end to see specialists over something that isn't real. Trust me, Colleen would rather be sipping margaritas on Sanibal Island over having tubes placed in her mouth and endless testing done to her body.
Of course, for family and friends, you likely want to know exactly what came out of this - and not just the part about stopping at a rest stop on the ride home in Delaware for Starbucks and an Auntie Anne's pretzel. Why is it that when you go to a rest stop, the food that comes out of those places tastes like it came out of a gourmet kitchen when you get back to your car? I think they could serve you a piece of cardboard, and you would still login to Yelp proclaiming how you just had the best piece of cardboard ever. Other than the fact that the Starbucks Girl didn't know how to make my Lemon Bar Frapp (which should have been a sign to me to NOT ORDER THAT DARN THING - I can't help myself - you would think the combination of what is essentially lemonade, vanilla, and milk would not be appetizing - but you would be so wrong) Anyway, I digress...
The bottom line is that Dr. O'Brien-Clarke firmly believes that Colleen has a pain issue - pain is her most active physical symptom, along with frequent feelings of her body being on fire, sleepiness, light-headedness, etc. Note that although it appears likely that Colleen doesn't have what you label Gastroparesis, he didn't flat out say that Gastroparesis is ruled out - just extremely unlikely. Hopefully you have learned through reading this blog that Gastroparesis is a very much general, "all-encompassing" term. One day, I (and I am sure the medical establishment) would probably love to be able to take these motility issues and give them more specific names. Since so many people who have Gastroparesis have varying symptoms, it really is impossible for it to all be one condition. There aren't many conditions, for example, that lead to some people bloating like a balloon, while leaving others looking like skin and bones. Yet, Gastroparesis can (and does) cause BOTH symptoms. It just shows how little understanding there is about all of this.
As for Colleen's protocol for now:
1. She will, for about a week, start taking Marinol, which is essentially the pill form of marijuana. Although typically prescribed to aid in the feelings of nausea, it can also have positive effects in other areas, including potentially easing pain. This drug will need to be taken for a week or two - if she isn't showing any signs of improved well-being within that time frame, the drug is not likely to work long-term and can be instantly discontinued;
2. After that trial, she is going to try Remeron. Remeron is actually in the anti-depressant class of drugs, but those types of drugs have proven to sometimes be effective in the treatment of motility disorders. It is again one of those medications that was designed for one thing, but has shown to also have positive effects in other areas of medicine as well.
(As I always say, medications are masks - they are not cures. If you have high blood pressure and take a drug to control it, you aren't curing your high blood pressure. You are taking a drug that essentially balances out your high blood pressure!) The reason you take any medication is because the potential gains (Good health!) may override the potential risks (You mean my skin may turn bright green if I use this medication long term?) Bottom line is that Colleen is trying a few new things to attempt to get herself back into her old routines - she would take 5,000 masking drugs in one dosage every five hours if it meant she could have her life back.
3. Pain management therapy - This is something Colleen has yet to try. Pain management therapy is essentially a series of injections in what doctors call "trigger points". I believe Dr. O'Brien-Clarke also referenced pain patches as a part of this therapy. Colleen has a major trigger point on the left side of her body - a spot where she can feel the pain radiating from. From what I gather, they would inject her in that area and evaluate whether or not her pain subsides.
4. The NIH registry study - Essentially, a series of tests not typically covered by insurance but are free to people who volunteer for the studies. Although these studies are more in the Gastroparesis side of things, we have to remember that Gastroparesis has not been ruled out completely (just seems very doubtful) AND these tests can have benefits beyond just Gastroparesis.
5. I have yet to really research this myself besides going to their web site, but there is an Integrative Digestive Disease Center at Johns Hopkins (http://www.hopkinsmedicine.org/integrative_medicine_digestive_center). This is more in the "alternative medicine" vain. Although Colleen has done the acupuncture therapy in the past, there are many things here that she has yet to try.
6. She also can schedule a neurology consult for autonomic testing. The doctor recommended to us for that essentially has a 6-9 month waiting list, so if Colleen does decide to go in that direction, it will be a long while before we are able to actually get to see him.
Bottom line is that for all of the long hours we are on the road (and Route 70 truly is the worst, longest road in New Jersey history - don't even try to convince me otherwise.), the trips are worth it. They aren't comfortable for Colleen given her illness, but they have purpose - they have meaning - and the pros greatly outweigh the cons. Very few doctors we have seen gave us the feeling that the pros outweigh the cons - I can probably only name two or three.
I just hope one day we don't have to make them anymore - that the downpours subside, and the clear days outweigh the dreary ones until we get to the point where the dreary ones no longer exist. For now, Colleen would accept incremental improvement. Hopefully, one or more of the therapies above provide it.
