I...am...exhausted. I'm so exhausted I would not be able to express to you with words how exhausted I am because I would not be able to speak. I can't think. I can't read a book. I want to, I just can't.
It's been a long week with doctor appointments, physical therapy, mine and Ian's, Jan's driving school and their baseball schedule...and that's without having to stay for their games and practices. Yes, judgmental mothers of the world, I am one of THOSE mothers, that drops her kids off at practice and leaves without setting foot outside of the car! It just goes to show you, that you never know peoples' circumstances. Maybe THAT person is suffering from an illness and isn't just dropping the kids off because she thinks its a babysitting service, maybe she just can't stay because the sun makes her sick, because her backs REALLY hurts, (and all of her other joints too), because she has surgery coming up and needs to get her affairs in order, or maybe she's caring for another family member, who is going through something like this. Well, that's my two cents. Anyway, Mark gets to ALL the games and practices and cheers them on and is the supportive parent, LOL.
I'm also overwhelmed. This week alone there were 8 medical appointments: vocal test, rheumatologist, physical therapy (me), physical therapy (Ian), surgeon (new), MH therapy, pain management (new), barium x-ray with swallow for upper GI (diagnostic for pre-surgery). This is about an average week of medical appointments, only the doctors, tests and days of the week change. Its a lot to handle! And driving is so painful! I also have to add, I am scared to see new doctors. So far, this week I have been SOOOOO lucky, in that they have been EXTREMELY friendly, they have made me feel at ease from the very first minute, and have been VERY knowledgeable in EDS!!! In fact, the surgeon asked for a test pre-surgery saying he would be surprised if I DIDN'T have a hiatal hernia because it's so common in EDS and I already have the advance GERD that goes with it! The Gastro that referred me, who is also relatively new, is such a sweetheart too! But, tomorrow I see the pain management people and I'm so scared that they'll think all I want is pain drugs. I'm sure they see that a lot, and I do want them to be able to find SOMETHING that I can use, especially post-surgery, but their facility has so many resources: TENS, PT, electro-stim therapy, ultrasound...that I know would be useful to me. Besides, I'm allergic to so many pain meds, that have got to know I'm not drug seeking! I'm also willing to do the work to feel better, but there HAS to be SOMETHING to at least EASE the pain when it gets really really bad.
With how overwhelming this all is, I hesitate,(roll my eyes and want to slap someone) when I hear, "maybe you should get a second opinion..." I think the medical team I have really is doing the best they can considering my circumstances. I have changed doctors when I have felt uncomfortable or felt that their attention and care has been sub par. I know that "a second opinion never hurts" but when a third and fourth are being sought it gets to be too much. At some point, there has to be a decision made, you have to follow your gut, there needs to be continuity of care. There will always be someone that says their doctor is better, or such and such professional went to a better school, that's all great but how are their bedside manners? what about rapport? what about treating the individual, not just the symptoms or the medication, as in complicated cases like me? There is no textbook for people like me...they have to think outside the box! LOL
It may sound odd, but I'm actually looking forward to the surgery because it means there will be a recovery period. I need a break. I need to slow down...without feeling guilty about it...without worrying about dinner, folding laundry, driving anywhere...
No comments:
Post a Comment