Time & Surgery

I know I am slacking on updates, but I have words rolling around in my head, and will spend tomorrow writing them on here.
I am thinking about alot of things, but the biggest is my upcoming surgery next Thursday, 22nd.
When I scheduled it 2 weeks ago, it seemed like it would take forever to get here, and here it is.
I still don't have a time for my surgery yet, but I'm calling the hospital tomorrow for a time and to see if I need to come in a do a pre-op.
I'm nervous and excited at the same time. Having this surgery means that I will finally be able to get my life back. My life that I had before I got sick, and had chronic pain.

I'll write more about surgery, life, and other things tomorrow, when my mind is clearer.

prayers needed... for me

I know that I am getting really bad at updating, but I haven't felt like writing.

I can say that I am in a really bad place right now. Physically, Emotionally, Mentally, etc. and I could use some major prayers.
I'll update more when I can, just know that I am still, after 17 months of being sick, having a very hard time dealing with everything. My life has been turned upside down and it will never be what it used to be and I HATE that.
I am going through a rough patch in life, going through it for the past 5-6 months, and just when I start feeling better something happens to push me to the bottom again, and I have to climb out all over.

Does anyone else feel like this? Even if you aren't sick, do you ever feel like you're trying to climb out of a hole and right when you get to the top, you loose your hold and fall back to the bottom again?

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.
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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.

Thursday night update

It's late Thursday night. Thunderstorms have just finished rolling through my city. With the thunderstorms brought hail, high winds, lightening, thunder, and 2-3 tornadoes. In my part of town we only got rain, thunder, lightening, and high winds. We need every drop of rain we can get. We are in a stage 4 drought (the worst stage drought a place can have).

I got released from the hospital this afternoon. I went in Tuesday morning about 3am, and was not so easily admitted this time. I am off my pain pill, Dilalulid. But, I am on 100% my pain patch, Fentynal. Fentynal is the strongest pain med on the market. If that doesn't show how much pain I'm in, I don't know what will. I had an endoscopy done yesterday afternoon, and nothing was found to be wrong.
However, the Dr. did admit today that something could be there, but it is not showing up on any tests. He also admitted that my syndrome is so rare, that there is no book that says how things should be handled. Everything that could/can be done in the hospital is happening at home.

I am very out of it, and still don't feel 100% yet. However, life goes on. My family is coming over this Sunday afternoon for Sunday lunch. I or my mom or both of us is taking my dog to the vet on Monday for her yearly check-up.

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I DO have a small update on Dakota. She is doing well. She is thriving. One of her nurses posted a private message saying that Dakota is talking, eating, and interacting well with the nurses. Now that her mom is not there, and my guessing is that she had developed a great fear of her mom and that fear had caused her to digress, she is acting how she used to act, before she was hospitalized 80+ days ago. Her mother is not allowed visits for 30-60 days, and even then the visits will be closly monitored by CPS. I don't know where her mom is, I just know she is not at home. I don't know if Dakota is still in the hospital or if she is at home with her father and older siblings.

Update on Life

Last week was a really crappy week because I had 2 really good "leads" as far as medical stuff goes.
The first was for a local health clinic, and the second was an appt. with a local surgeon that does a fairly new surgery that would help me stomach.
The first fell through, because I don't make enough money. A person has to make $1,300 a month, and my disability checks are only $528 a month.
The appt. with the surgeon fell through because they wouldn't accept me because I don't have insurance. And my normal surgeon doesn't do that sort of surgery.
But also during this past week, I have been in alot of pain, especailly when eating, and because of that I have lost 10lbs in 1 week.
The only and last chance is to go back to my reg. surgeon and see if he will put a new feeding tube in. But, the entire reason why I stopped doing tube feeds was because it hurt too much.
When I was in the ER in December the ER Gastro. Dr came to the conclusion that I need to have exploratory surgery in my digestive tract to see what was going on and causing all the pain and trouble eating.
I don't know if my reg. surgeon would do that.

So, I am at a dead end road. And I'm sick of this. I want my old life back and I don't want to keep being sick. And we are coming up on 1 year of dealing with this, still with NO answers.
I have no friends, and I'm so lonely. I haven't been to church in 6 months and I miss it so bad. I have no church family that would do "church famly" things because I was in the middle of switching churches before I got sick. I don't want to spend time with the family, because every family function revolves around eating, and I CAN'T DO THAT!!!
I feel that no matter how many people pray, I keep getting worse. I don't have any energy to get out of the house because I can't eat, but yet my mom harps on me to get out of the house, but when I try, I run out of stamina quickly.

I don't know what else to ask people to pray for that hasn't already been prayed for. I just know that I can't keep go like this much longer.

Please just pray that something will change.

So Many things

I have so many things to write about, but I want an empty house to write in, and won't get that till tomorrow.
PLEASE keep me in your prayers, as some really promising "leads" fell through today and I am really bummed.
I am really thinking about life and death and I feel like I'm at a cross-roads.
I know that people everywhere are praying for me, but I just don't feel it.

I will write more tomorrow.