I should have known after the night I had - that my day was not going to be any better. It started with a dream about my brother. We were all at a water park going down a water slide. Everyone gets to the bottom and I turn to look for my brother waiting for him - but he isn't coming. Suddenly there is a commotion on the walkway bridge above the slide and I see several men with their arms laced under this man who is non-responsive. It is my brother. By the time I raced up the stairs, they had him laying on the ground in this room. Just as I pushed my way through the crowd to make my way over to him - I woke up. It took me quite awhile before I could fall back to sleep.
When I did finally get up this morning - I was exhausted. All though I don't remember my other dreams right now - I know it was a very stressful night of sleep (or rather lack of). I started my TPN bag later than I wanted to - but I also knew I was going to have a long day so it wasn't necessarily a bad thing either. Got my daughter off to school and worked for a few hours before getting ready to head out for my appointment with my rheumatologist.
The ride to the city was stressful. I actually think I was in a fog for most of the ride, because now that I think about it I don't really remember the ride. And go figure - the day that I give myself almost two hours to get down there (cause I was driving during the lunch rush hour) - I make it there in 30 minutes.
Now some people reading this remember my parking garage catastrophe from last year when I went to see my rheumatologist - so I always laugh and pray that I don't have a repeat. Basically I left an appointment last year very upset and should have calmed myself first before driving but I didn't. It had been my first visit with her and also my first time in the parking garage - not realizing that I had to go into another building to pay for the ticket before leaving. Well, I went to leave the garage - had to put my car in reverse to go back and pay - and took out the ticket reading machine. So as I parked my car today and noticed that I was again on the 5th floor - I was a little concerned over how the day was going to play out. Oh - and to top things off, there was a sign hanging on the elevator doors warning the parking garage customers about an increase in break ins and thefts to cars in their garage...WONDERFUL!
So onto my appointment. I was taken back about 30 minutes after my actual appointment time - which really didn't phase me, because this doctor is usually very thorough and spends the time needed with her patients - something which I admired about her when I first met her. So now it's my turn - or so I thought.
I got into the room, took off my sweatshirt so that she could take my blood pressure and stuff. She noticed my picc line - and said "What's this? I thought maybe you just an earphone line running to your backpack." The rest of the visit felt like she was fixated on my picc line and the gastroparesis versus what I was there to see her for. She reviewed my lab work which had been done during my hospital visit and just kept shaking her head. I mentioned to her about the comments made by two of the doctors that saw me in the hospital and them thinking I have CREST.
Her response was not what I expected. Now I will preface this with this fact - I DON'T want to hear that I have CREST - but it is hard to not worry about that diagnosis when I have several of the markers. So she responds with - "Those doctors don't know what they are talking about. The term CREST isn't even utilized anymore because the majority of patients never have all five markers. The correct term, which we have used for the last two years, is limited scleroderma. And besides, those doctors shouldn't be making those diagnoses anyway. And even if you do have it - there is nothing that can be done for you to make it go away. It's not like I can open up this cabinet and be like - Oh, here is this medicine to make you better and we will ship the rest of it to your house."
At this point - my jaw is on the floor. I could feel myself start to go into shut down mode - which is what I do with a doctor when they start to make me feel like an ass or are not listening to what I am saying. But I continued to share with her the rest of the information that I felt she needed to know during this visit.
She asked how my Raynaud's was doing. (If you don't know - Raynaud's is a circulatory disease which causes symptoms primarily in the hands and feet - and is more common in women. People can have Raynaud's by itself or can have it conjunction with another condition - something my parents were told to watch for when I was diagnosed as a teenager). So I told her about the problems I have been having - especially on my right side. That when I have an attack, my entire right arm will get ice cold - cold to the bone to the point I can't get it to warm back up very easily - and that sometimes the coldness comes across into my chest. She was puzzled.
She asked if there have been any other changes in my skin. I explained to her and showed her the small bumps which are now present around my elbows. I told her that they have been there for a few months now and don't seem to be going away. She confirmed that she could feel them - but said nothing.
And when she asked about any chest issues - I shared with her the fact that for almost the past two weeks that I have been experiencing getting winded very easily. Walking from car into work - I'm trying to catch my breath. Up and down the stairs - winded. No stamina - just wiped out.
So she typed away on her computer for a few minutes. Wrote me out a script to have an ultrasound done on my right arm (she wants to make sure that something isn't being missed that could be interfering with the blood flow in my arm). Then she looked at me and said - "So what do you say we meet again in six months?". Like it was my choice. If you don't need to see me every two months, like most specialists do, then just say you want to see me in six months - don't give it to me as an option.
To say I left frustrated and confused would be an understatement. I felt like I had just seen a doctor that wasn't the same person I had previously been seen by. She never came out and said you don't have CREST (or limited scleroderma) but she didn't say I did either - just that she wouldn't be able to cure me. Kind of something I would like to know - since I already have a form of scleroderma. I honestly don't know what to think at this point.
What it did do - was confirm the bad feeling I had already had. I usually have pretty good instincts on certain things and last week I was walking around with the feeling that I was going to hit a wall with my current medical team. Something which worries me more about my next appointment on Tuesday with the gastroenterologist. I am worried that he has hit his limits of how he can care for me, I am worried that he is going to pull my picc line too soon when my stomach is still not functioning the way it needs to for me to be able to eat.
Trying to keep myself from going into doctor shut down mode - cause it's not something I can really do. Trying not to go into emotional shut down mode - cause I can't really do that either. Hoping that this weekend's activities free my mind for a while - without wearing out my body.
I need a happy day - a runaway camping day.
Then happy campers we shall be. I will bring the tent.
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