Busy Weekend

I had a busy weekend, which included a trip to Albany, Tx (a 5 hr drive) to bury my grandfather's ashes, 11 months to the day when he passed away. It was very hard for me, and very emotional for my family. I am glad that it is over.
I got sick on the car ride up there and started throwing up, so my mom had to pull over and I had to take extra meds. Luckily, I brought all my meds with me.

After being in extreme pain after my nerve burning last week, I got a last min. appt. with the Dr. and she said that my extra pain was due to the fact that my "little" nerves are inflamed & not used to the main nerve being gone. She increased my meds, and told me that after my 2nd nerve burning next week the same thing will happen- I will get worse before I get better.

After picking my dog up from the kennel Sunday night, I realized that she had a small wound on the side of her head that had dried blood scabed over. This morning when we got up my dog's face was VERY swollen. After a trip to the ER vet the wound had becomed abcessed and she had to have emergency surgery to have it drained. She cuurently has a small open hole on the side of her face with stuff draining out of it, that I get to clean often for the next week or so. She is on anti-biotics and pain meds for the next week.

I have a kinda busy week. I am still in alot of pain and very nauseous, but there is stuff that has to be done.

Nerve Burning

Well, after what I thought would be a rountine pain Dr. check-up turned into scheduling for a nerve burning procedure.
Both of my nerve blocks didn't work. I got 1-2 days pain free, and was suppose to get 3-4 months pain free.
The first nerve burning procedure will be this coming Monday morning at 9:15am. I will be sedated again, and the procedure will take about a hour.
The objective is to burn the nerve(s) so that the nerve will no longer send signals to my brain saying that I am in pain. I will have 2 of these procedures done, but then end result is that I am suppose to have a longer time without pain.
My second procedure will be Monday the 16th.
The Dr. also said that it is normal for the nerve blocks not to work on a patient that has been in as much pain as I have and for as long as I have.
The Dr. also increased another one of my pain meds, so I will be taking it more often throughout the day.
Hopefully the nerve burning will work and I can get some pain relief.
Please be praying that the burns will help.

Struggles

While I don't want to go into details, I am here to admit that I am really struggling. Physically, emotionally, mentally, and spirtually. Having a chronic medical condition is HARD. Being in constant pain is HARD. Not having a church family, for the 1st time ever, is HARD. Not having the support system that I once had is HARD.
Please keep me in your prayers as I continue to go through life. At this moment, I see no light at the end of the tunnel. October has been hell month for me, with 2 surgeries and 2 nerve blocks, and 3 trips to the ER. Novemeber doesn't look much better, with spending ALOT of time with the family, traveling all across Texas, finally burying my grandfather; I see a very tiring month ahead and don't know if I have the stamina or strength to keep up.
I have been traveling on this "new" road for 18 months now, and while I didn't think I'd be on this road for this long, I don't know how much further I can go.

Please pray for strength, for change, for me not to lose hope.

Unexpected Surgery Round 2

I had a very unexpected surgery this morning. My new tube broke/came out yesterday (yes, the same one I had put in 2 weeks ago) and I spent most of the Sunday afternoon in the ER waiting for a surgery that never happened for 2 reasons 1) no one read my chart to see that I have to be sedated for this surgery ( it was going to be done w/o sedating me) 2) they didn't/couldn't find the correct tube. So, surgery took place about 10am. I brought the correct tube, so they knew what to use. I have made up my mind that if this tube falls out again, I will NOT have another surgery to have a new one put in. This is my 6th surgery for a new tube in 5 months. After today, I won't do it again. I don't know what time I will be home, but probably mid-late afternoon.

Will this ever end?

This weekend, especially Friday, I feel I have taken a turn for the worse. I am having to rely on my pain & anti-anxiety meds much more know, as the pain has greatly increased. I tried to take a feeding, on the lowest rate possible and I had to stop after the first 50ml, only 1 hr. in because the pain was too great. I tried to continue later in the day, but to no avail. Plus, my new feeding tube is not going to make it. When the stitches come out, there will be nothing to hold the tube in place and it is leaking. I want my old tube back, because I know that it works. Actually, I don't want any feeding tube at all, but that's is not a possiblility. It is getting increasingly painful to eat again, so I have started my baby food, no texture diet again. That includes: baby food, popcicles, soup, pot pies. Not much, I know, but any time food hits my stomach I am in great pain.
I have already lost 10lbs in about a week, and feel that the number will increase the worst I get. I can't do anything because I feel so bad and I'm in so much pain. I have no energy because I'm not eating much. So, my bed has become my new hangout place. Thankfully I have Netflix, so I get new movies every few days.

I guess getting this nerve block on Monday is happening at a great time. I pray that it works and that I will be able to take more tube feeds without pain.

I can't go to the hospital because there is a note in my chart to not give me any more pain meds. But, considering I am already on very powerful pain meds, there should be no reason why I should be in pain. I can't go to my GI doc because he doesn't know what more there is to do. I feel pushed up against a brick wall.

Friday morning

Nothing big going on here. It was HOT today, but suppose to rain all day tomorrow.
I did end up having a very unexpected emergency surgery Monday afternoon, but I am already recovered from it and now I'm looking forward to my nerve block this coming Monday morning.
Actually, I am a little scared and nervous of the procedure, as I have never had one before and I'm scared of what could happen and what could go wrong. Hopefully, it will work and I will be able to go off the fentanyl for a while.

I have a prayer need for a family I have mentioned before. The family in Houston that has sextuplets. Three of them died shortly after birth, and 3 girls are still alive. The girls are now 2 mths. Ashlyn, the smallest weighing in at 13oz, is not doing well. Some of her systems are shutting down, and even though she is still on a vent, she is fighting for oxygen and not breathing well. She has been fighting for a while now, but now it seems that she may be loosing this fight.
Please pray for the baby. Pray for the parents. Pray that the Dr. & nurses will be able keep this little girl alive.

Nerve Blocks

The following an email that I send out yesterday about my upcoming Nerve Blocks. You can click here for a link that tells more about what happens during a nerve block and how it is done.


I know that I haven't been sending many updates, but I have been doing ok. Nothing major happening with my health, but I am in constant severe pain 100% of the time and because of that I am on extremely strong pain meds.

However, the pain meds seem to not be doing the trick any more. I saw a new Dr. a few weeks ago at my pain clinic and he suggested doing a nerve block. Having a nerve block done means that, if it works, I could be pain free for 3-4 months at a time, and during that time I wouldn't have to rely on my other pain meds as much.

I am asking for prayers specificly for these upcoming procedures ( I have to have 2 for the block to work). Doing a nerve block is very risky and a last effort preocedure. The doc. will be inserting a needle filled with an anthestic into the correct nerve group in my spinal cord. I will be sedated and a x-ray or CT will help show the Dr. the correct bundle of nerves to inject the meds in. Normally, the doc. would inject several different meds, but I am allergic to some of the different ones that he would use. Because of that, the doc. doesn't know how well the block will take, but anything is better then where I am at today.

My biggest fears is that 1) the nurses will be unable to start an iv on me. The last time I needed an iv started in took 5 hrs to find a vein that would not blow. They ended up using a vein in my foot. 2) the procedures will not work. Considering I have had 2 huge botox injections in the past year and neither of them took, I am very afraid that the nerve blocks will not take either. 3) any time a Dr. starts messing with a spinal cord there is fear that something will go wrong.

The "good" news is that my doc. own a surgery center that is right across from the main office. The office and surgery center are less than 5 min. from my house. So, I won't have to go to a "real" hospital and if all goes as planned I should be in and out within 5-6 hrs. If something happens, it could be an all-day affair. My first procedure is October 12th and my 2nd is Oct. 26th.

I will update if something changes and I will update after my procedures. Thank you for your continued prayers.

Early Sat. morning

Yesterday, Friday, I woke up for the first time in 18 months WITHOUT being in any pain. I thought it was a fluke and this morning I was right. But, even though I spent much of the day yesterday in no pain, I did end the night by taking pain pills because the pain came back.
I woke up at 4am this morning in ALOT of pain, so that is why I think yesterday was a fluke.

After seeing my new pain Doc. a wekk and half ago, he took me off the pain med that I had been on for 6 months and put me on something different that never worked, even after doubling the dose. Finally, after a week in extreme pain, he put me back on the main pain med., but there are several things that must be done before I take it, so I haven't had it yet, but will take my first dose this afternoon. I am hoping that it will kick in quickly.

I am going back to bed soon and will hope to sleep most of the morning.
I have more to update, later.

Urgent Prayers Needed

I read about this family on a friend's facebook page.
It is about a family in Houston. The mom had a baby last Tues. 9-15 and this Tues. 9-22 the mom was declared brain dead and was taken off life support. The Docs don't know what went wrong other than the blood got cut off from her brain, causing brain damage.
Please keep this family in your prayers as they welcome their new baby, and mourn the death of the mom.
The Sullivan Family

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?