ER trip Round 2

Yesterday, Sunday, I spent about 5 hrs in the ER. I have been in much more increased pain, especially when eating and trying to do tube feeds. Since I went to the ER at 4am, there wasn't a wait and I got into a room almost immediatly. I was also at this same ER 10 days ago, for what I thought was a different problem, but by the time I was released I realized both trips were for the same issue.
The Dr. did a radiograph, which means I had some really thick dye inserted into my tube to see if maybe I had a leak in my tube. Good news is no leak. Bad news is that my bowels are about 9-10 ft backed up. I didn't think that was the problem since I have been on extra fiber and pills to help regulate my bowels (and I thought they were working) since my 1st visit 10 days ago, but I was so wrong. The extra pain that I am having is because anytime I eat anything there is nowhere for the food to go since I am so backed up. So, tomorrow I will be starting a drink that is normaly given to patients who are about to have a colonoscopy. Luckily, I will not have to actually drink it, but I can put it through my tube. I have to have atleast 3 liters (think of the 3 liter bottles of coke) to have any chance to completly empty my bowels. But, because of my ongoing gastro issues, there is a higher chance that I will have more side effects from drinking/ pushing this stuff.
Please pray that this stuff will work, and I won't have any or many side effects from it.
Also, while I was in the ER, I asked for some extra pain meds, and they gave me a lollipop version on the pain med I am currently on. They called it "pain med on a stick". It was a much higher version than what I am currently on, but after eating/licking it, I was totally pain free for 24 hrs. It also completly knocked me out and I slept for almost 16 hrs. I am glad they gave it to me, because after having both nerve blocks and nerve ablaton fail, I didn't know that my current pain med came in a different form or a higher dose.
I am going to see my pain Dr. next week to ask him where I go from here. With the failed injections and the pain getting worse, (not from this issue) I want to discuss my options about my pain care, and after having that extra pain pop I know that there are additional meds that I can try.
Please also be in prayer that I can remain healthy. I have been feeling more sick recently, and I feel that I am coming down with an upper respiratory infection or pneoumnia. I have the all the symptoms of both, but there is nothing I can take until I become sicker or start running a fever.

Not meant to be

Thanksgiving lunch with my family on Saturday, was not meant to be for me. After debating back and forth in my head and with me mom and finally deciding to attend, I got sick at the last moment and spent Saturday sleeping in bed. When I tried to eat left overs that were brought to me, the only thing that would go down were the sweet potato's.
A trip to the beach this week to celebrate family with my family, was not meant to be for me. I am running a fever, and have been for almost 2 weeks, and I don't want to expose my family, one person who is pregnant and has a small child, to anything that I maybe infected with and get them sick as well.

Thanksgiving last year, I don't even remember. Thanksgiving the year before, I had the stomach flu and was in the hospital.

Maybe next year will hold a normal Thanksgiving and a year of things to be thankful for.
But, after watching a back episode of Bones today, a certain line stuck out at me: "what do I have to be thankful for?, I am alive and breathing"

Yes, I am thankful for being alive and breathing, especially after everything that has happened this year. But, after thinking for a while I have other things to be thankful for:

• A mother that loves me dearly
• A family that loves and cares for me, even if they don't know how to show it
• A saviour that died for me and my sins... and yours too
• To live in a free country
• To have a house over my head and food to eat and clothes in my closet, because some even in the US don't have that

What are YOU thankful this week? Even if you are in a place where you can't see the light at the end of the tunnel and you don't think you can keep going, remember that there is ALWAYS something to be thankful for.

Thanksgiving?

Tomorrow is my family's Thanksgiving Dinner, since most of us will be at the beach next week.
Thanksgiving doesn't mean much to me this year. I've always been big into Thanksgiving and at family dinner going around the room and saying what we are thankful for, but this year, not so much. Since I've been so sick this year, had 3 pain blocking procedures and they all failed, lost my grandfather, and pretty much lived a non existent life, what do I have to be thankful of?
I'm still alive, but I am no closer to being off the pain meds than I was last year, the Dr's have given up on finding what is wrong with me, I have no friends, no contact with the outside world, except through the internet.
With my stomach problems, don't know what I will be able to eat tomorrow, plus I am having additional digestive issues that required a 5 hr ER visit yesterday.
I seriously don't feel thankful for anything except for the fact that I am still alive.

On the other hand, I have found another person that has the same syndrome that I do. She is a 3 yr old little girl and she is the first person, other than me that I have heard of that has my syndrome. She could use some prayers as she has been really sick and in the hospital for the past few weeks. Her name is Eithene and you can find out more about her here: http://www.fromthebanksofjordan.blogspot.com/ .

Also, if any of my readers are artistic in blog creation, I could really use some help with a blog redo. I try to add templates, but my words either get cut off or it looks strange. I don't want to go all out, but just something cheap and cute would help.

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.