This goes down as my longest trip to Mayo, Florida. When I fly home on Wednesday, I will have been here for two weeks and a day. It has been frustrating in the extreme and I have dealt with the nastiest doctor I have ever had here.
In the past two years when I have been out here, my experiences have been very good in the sense that I felt I was being treated as an intelligent being and that my doctors were working with me for a solution to whatever was going on. I guess you cannot expect a winner every time.
This all started so much better than my previous trips because my sweet, lovely, best friend and cousin, Kay, drove out here to meet me. I had her by my side for a whole week. Unfortunately, it was a week of nothingness. All that happened was a big deal, ninety minute MRI with a dye that made me react. (Yeah me , something new for the old allergy card!)
Basically, the doctor has been hostile in both of our meetings. And so far the meetings were a week a part. I was told by his staff that he only had office hours once a week and I just had to wait. However, he told me he was out for four days of the week I came in and that he has office hours every day. There was a ball dropped in several places there. I also learned I could have switched doctors; which would have been the best option all around. So, that first week, nothing got done but an MRI, some blood work and two trips to ER.
After my second meeting with the doctor last Wednesday, Kay had to leave to go home and care for her family. I got a menu full of tests, much like I would have expected when I first arrived. It really feels as though a week was just blown. I mean, I loved spending time with Kay, but it wasn’t the way we had planned.
The news from the MRI is that my pancreas is atrophied. But, as Mr. A-hole Dr. screamed at us, “I don’t know what your pancreas looked like before!” I understood that he wanted previous records but I was at a loss of how to get them. After making a few calls, I called his staff and they told me they would handle it. If I had known that a week before…. again… why the wait?
So here I am, it is Sunday again and I have come through several really bad days. Thursday I had an upper endoscopy and the anesthesiologist knocked me out really big time. I slept the whole day after the procedure and then through the night. I barely made it to barium swallow testing on Friday. Also, unusual for Mayo, the instructions were wrong for the testing. I assumed I needed to fast but it was not on the instructions: I was correct.
Yesterday, Saturday, dawned early and painful. I had been in horrible pain all night. My arms, my back, my hands, my wrists, my fingers, and yes, my damned upper right quadrant that sent me out here: all of it was hurting and I could not take it anymore. I was depressed and in pain and dirty. I had not bathed since Thursday morning. I am never gross like that.
I walked to the ER and they got me in pretty quickly. The lady doctor came in and I could tell right away what she thought: I was there for a high. Really? Who flies across the country to get high? I was in the middle of a Mayo clinic work-up; I had walked in from the Mayo Inn. What a dip! The nurse was an older male and seemed to be pulling for me but then I did the wrong thing: I had a full blown panic attack. All of a sudden he was not my friend and started talking to me like I was dumb. Oh My God, my daughter has anxiety disorder and suffers from panic attacks and I know how crappy it is. Being on the other side of the fence makes me physically hurt for her. I was given a Xanax under the tongue and told to go. I was not even offered a wheelchair.
So, what do you do when you are sick and far from home and having a panic attack? You take another Xanax and you pull yourself together.
I read my book and pulled myself together and got a plan. No more visits to ER. Today I cleaned up and got a ride to Target where I got my pain ‘script refilled. Then, I came back and booked my flight home for Wednesday. The last of my testing will take place tomorrow/Monday. On Tuesday I will try to see Dr. A Hole. He had asked me to see him on Thursday but I cannot spend more days doing nothing here. I have to go home. In any case I will get a complete work up and diagnosis packet from him in the mail. I would prefer to discuss it in person but we’ll see. I had to make an end date.
The people here do not realize that not everyone is from Florida. I don’t know why but that seems to be the case.
I guess a lot of the patients here are regional.
So, I have a plan, which makes me feel a little more in control. I am still hurting and my appetite has left the building. I have been a sweaty, weakened mess today. But, the only thing I can do is look forward.
This is Holy Week for Christians and Passover for Jews. I plan to celebrate Passover this year. The symbolism of slavery and the forty years spent wandering in the desert are not lost on me. Passover has been celebrated for over five thousand years and is really a ritual way of affirming G..d’s Covenant with His chosen people. He will not leave us in the desert. Eventually, against all the odds, we will be given the Ten Commandments at Mt. Sinai and we will make it to the Holy Land.
For Christians, inclusion in that covenant is made at Golgotha and completed at the empty tomb. The message is essentially the same: G…d comes back for His own: Even the stragglers.
That is a message I really need to hear just now. I am on shaky ground with my spiritual self these days. I am fighting my way back from a deep chasm of unbelief. But, all I can say is, I need that message. I need to know that the time I have spent and the money I have spent here have not been all for naught. I can’t handle that thought. Please, Lord, let there be some guidance and some light in my struggle. I want to be healthy as I possibly can be. I need to know what’s next for me. Do I have only pain to look forward to for the rest of my days? Or will I get better and have a period of remission? How can I take better care of myself?
How do I know when a doctor is looking out for my better good or when I need to move on? What is the balance between knowing too little and knowing so much that it is crippling?
There are so many questions. Perhaps that is one of the attractions of Judaism for me just now: the existential Why?
Well, this essay started with a title of May-HO. I did that because it was funny but also because that is what I feel like. I have whored myself out to Mayo once again and left myself open to suggestion. I have no control over answers; only hope and more questions.
I beg and plead that the Lord will let the doctors see and me understand some new direction for healing.