So I have a little medical announcement. I decided to see a surgeon and made an appointment for October 7. I have been feeling worse again lately and have been suffering. I’ve been forced to work from home more than I’d like and I feel like the improvements over the last few months have all disappeared and I am back to square one. Of course, that might not be the case — but that is certainly how it feels now, with no end in sight.
What I am paying for with this surgeon is actually a very expensive opinion. This guy does not take insurance. He is basically the very top doctor in a highly specialized field and from what I have been told by my other doctors, his opinion is worth the money.
So thanks to my mom and maybe my grandma, I have a consultation with this doctor. As I’ve mentioned before, I already decided not to have invasive surgery that is impossible to reverse. But I am curious about the following:
- The doctor’s overall assessment of my problem. While I have seen quite a few gastroenterologists in the last 2 years (5 to be exact), and 2 of the 5 are familiar with situations like mine, I have yet to see one who sees ONLY cases like mine. Until now. This is all this surgeon does. I need his opinion and thoughts! Particularly because while we generally have my issue isolated, some tests show additional issues that I’d like resolved if possible.
- Less invasive, reversible surgical options. The last doctor I went to mentioned some uncommon, new-ish surgeries that have been tested in situations like mine. She didn’t know very much about them, how often they are done, what they entail, if they are even being done — but this doctor WILL know. Maybe one will be right for me and help give me my life back in one-stop, rather than the weekly expensive treatments I have been undergoing. Which I do plan to continue, but hopefully not quite so often.
- Doctor recommendation. The surgeon works in a hospital specializes with transit problems like mine, while the hospital I currently go to specializes more in IBD patients. I’d love to get some recommendations of doctors who I could work with going forward who might be able to help me more.
- His opinion on pain relief. Right now, when I am feeling intense upper abdominal spasms, there isn’t really anything I can take. My doctor just wrote me a prescription for a muscle relaxer that might help, but I couldn’t use that during the day because it will put me to sleep. I’m curious to hear if the surgeon has any suggestions.
I carry this big folder of all my test results to every doctor and it is a mess. I am always losing parts of it and stressing myself out all the time. Every time I have a doctor’s appointment, I feel so much stress because of these stupid medical records. I am going to go to Kinko’s and make a few 3 ring binders with all the information so it is organized and difficult to lose.
Eventually, I want to scan it all onto the computer so I have a digital file, but Kinko’s doesn’t offer an easy option for this, so I will look into it further when the time comes.
The way it is now, I haven’t been able to exercise much (other than my AWESOME 4 mile run, luckily) and any hopes of working out at all are far diminished one I’ve eaten anything at all. I’ve had to work from home, racking up cell phone minutes because my job entails nonstop conference calls throughout the day. When I am not near home and I start to feel sick, I feel such a sense of hopelessness and become stressed and agitated, which happened yesterday while running errands. I am unable to keep social plans and making any kind of decision about something becomes a question of “Will I be able to follow through with this? What if I don’t feel well enough?” — which is the case with the Humor Writing class I signed up for. Praying I am able to sit through 3 hours of class a week . . . or even make it there at all. They have a pretty good refund policy so I can change my decision if I have to. I really hope I don’t have to though! And then there are my races. I signed up for 2 more races this year and I joined New York Road Runners with hopes of signing up for more next year. These races cost money and I’d like to know I will be able to get up on the day of a race and run in it. Of course, anyone can wake up sick on any given day, I know that. But there is a greater likelihood of me waking up unable to run than the other runners I know — and that is enough for me.
So my decision to finally see a surgeon could not have come at a better time. It has been over 2 years since I got sick and I am ready for some real answers. Sure, I might be getting my hopes up . . . but in this case, I finally feel like I am seeing someone who can give me some kind of answer.
Sorry this was such a negative post. I am trying to be more positive and find something good to write about with every negative post so this doesn’t turn into a whining and complaining blog. Today’s good news is that it is my 1 year anniversary with the boy! I can’t believe it has been a year because I really feel like we just met. Last year on the day we met, it was the very last 85 degree day of the year and I spent my day laying out on my old gym’s roof deck. The weather of the day we met is something I will always remember — how funny is that! Anyway, it has been a really great year with the boy despite my medical problems and I don’t even know how I would have handled all this without him. He has curly hair. I am very lucky.
In honor of our anniversary, let’s all enjoy this Binary Heart:
