Thursday, June 18, 2009

Stellan and update on my appt.

My appt. with the new pain management Dr. went pretty poorly today. I was not happy when I left his office and I haven't stopped crying since.
Pretty much the following is going to happen... for now. I will stay on the pain patch. They are NOT cheap. For 5 patches it was $120, I don't know how much 10 patches will be. While I am on the patches I CANNOT drive, as if something were to happen (car accident) it would be discovered that I am wearing a pain patch and would be at fault for driving while under the influence of a controlled substance.
Driving is my one last normalacy in my life. I have a birthday next week, and I feel that instead of moving toward becoming a full adult, that I am having to rely on my mom more and more know and it is turnng me back into a child.
The new Dr. wants me to see a different pain Dr, who has a 2 month waiting list, who has different therapies and techaniquies that would help me better.
The new Dr. said (and very bluntly at that) that I would never get better with pain control. I will be in pain for the rest of my life, and other than making me comfortable, there is no cure.

I used my savings to go and see this new Dr. and that money was what I used to pay for other Dr. appts, to pay for my prescriptions, and to buy my groceries and pay my bills. Now that money is gone and I don't know what is going to happen.
I will be able to start using Medicare in Aug. of this year, but I still have to pay some out-of-pocket until then. And now to go and see an different Dr. will cost more money.

There are so many"ifs" right now, and I don't know what is going to happen. I have started having daily anxiety/panic attacks, and have run out of the meds to treat them.
I am so lost right now. I feel like I am doing this all on my own, and while my mom is trying to do her best, her mom is sick too, so my mom is having to choose between staying home and taking care of me or going and taking care of my grandmother.

I feel like I am walking down this road alone and that I don't have any support or true friends that I can turn to. I don't see that light at the end of the tunnel and don't see a way out.
I will say that there are several other factors that play into this as well, that I don't want to share, but need prayer for. But, I feel that no matter how many people pray, my life and the situations in it just keep getting worse.
I feel abandoned by my family and "so-called friends/acquaintances" and by God.
I don't know how else to ask for prayers, when I don't see them working.

On a different note. Stellan was taken back to the ER this afternoon and has been admitted to the PICU. His SVT is out of control and the meds are NOT working. His Dr. has been consulting with the Dr. in Boston, but a decision to be made is still up in the air. Please pray that his SVT will stop and he will not have to be in the hospital for long. You can read about this latest hospitalization and all updates on his mom's page.

1 comment:

Anonymous said...

I'm so sorry for all you are going through. I feel awful for you. I sure hope things will get better for you soon.
Blair from Texas