Big Prayer Request/Update

Today is my appt. with the neurosurgeon. I'm a bit anxious, but on the other hand I need to have this surgery ASAP. I have alot of questions to ask, so I hope to have alot more info than I do now.

In other news, my eating issues are getting worse and worse. My esophagus is starting to not work again, and botox would usually and has been injected in the past, but it no longer works for me. Until we can figure out what to do it's back to babyfood and soft foods. Once I have a surgery date, I will be scheduling to have some tests done at Scott & White in Temple. I have to be sedated for the test and S&W in Round Rock doesn't do the test.

Worse is that my reflux has also started again, but this time I have been aspirating into my lungs, which caused my pneoumnia last week.

I honestly don't know how much more stuff I can take, but I'm hanging on. I'm finally seeing a light at the end of the tunnel pain wise, but digestive wise, no light yet.



______________________________________________________________________

I know I haven't sent any updates in a while, but I have been hanging in there. I'm still in constant pain 24/7, and I am still having alot of problems eating. I no longer have my feeding tube. It became infected and was surgically removed in January.

Within the past month several things have been happening.

First off, my eating issues have gotten worse. My esophagus is starting to not work again, and the normal medicine that they would give me, no longer works for me. My stomach is starting to slow down again, and I am not digesting food like I should be. I will be having some tests done soon, and depending on the results I could be starting some new meds or having surgery.

Secondly, my asthma problems have come back after being gone for about 2 years. I have been having asthma attacks and I'm getting over pneoumnia and pleursly.

Third, I had a trial period in mid Feb. for a Spinal Cord Stimulator. For a week I had 2 wires inserted into my back that sent electrical impulses to my brain to override the pain signals. The Dr.s & I were hoping for it to be atleast 50% successful and it turned out to be 90% successful.



TODAY, Tuesday, I have a appt. with a local neurosurgeon to meet with him and schedule having the SCS permantently implanted. I am hoping and praying that I can have surgery scheduled within a week, but I know that he is scheduling patients 3-4 weeks out. I need to have this surgery ASAP. I am maxed out on my pain meds, and I'm still in pain. But, once I have the surgery I will be able to get off all my pain meds, something that hasn't happened in 2 years.



Please be in prayer for my appt. Please pray that I will be able to have this surgery within a week.



I will update when I know something.



Emily

It's Back... need prayers

I'm sorry for not updating more regularly. I just haven't been in the blogging mood, plus there is not much to write about.

First off I will say that I have been on the fentanyl pain patch for about 2 months. I have my good days and bad days. Some days I wake up pain free and some days I don't. I will say that since being on the patch my pain is about 95% gone. The other 5% is my breakthough pain, and that number is rising slowly.

One of the reasons my pain is returning is the my esophagus is starting to NOT work anymore... again. The past week, when I have tried to eat, my food gets caught/stuck in my esophagus it just sits, and waits for gravity to take control. The food that is stuck is VERY painful. It feels like my throat and esophagus is on fire.
This also means that baby food, applesauce, pudding, jello, and soup is back on the menu. And anything with texture or anything that clumps together when swallowed is off the menu.
There are several choices about how to proceed with this.
But, I come asking prayers again. Medically, there is nothing that can be done, because I do not respond to medical treatment for this condition.
This condition is VERY painful, I pray that the pain will be controlled. I pray that my digestive system doesn't stop working along with my esophagus. I pray that eating soft, non-textured foods will help.
If you could add me to your prayer list, I would greatly appreciate it.
I will update next week.

Early week update

The clock says 12:10am. I have been asleep for the past 4 hours, home from a 4 hour trip to the ER, where other than a few x-rays & an EKG was done, nothing else was done. No pain meds given, no meds to help my stomach, nothing. The Dr. was afraid that the Dr.s at the main hospital downtown are just making me worse my loading me up on pain meds and making me comfortable. And the past 3 times I've been at the main hospital, I've had the same 3 Dr.'s, so it's not like I'm seeing a new Dr. everytime I visit. These 3 Dr.'s know me, they know my history, they know my case.
I am afraid that today will bring another day of an ER visit. I have reached or am reaching the point of last resort. Eating is no longer enjoyable, but most painful from the first drop of food that enter my esophagus, until it leaves my body. Tube feeds are just about as painful as eating. The little amount of pain med that I have is not doing the work, I am in constant pain. The chest pain has started, and it's not my heart, which means that my esophagus is inflammed and shutting down again.
In writing this I am just at my breaking point, I have tears streaming down my face, knowing that I may have reached the point of last resort, is not fun or comforting.
So, what is the last resort?
Other than opening me up and having a look from that perspective? Knowing that I'm not strong enough to make it through surgery?
The last resort is to put in a permanent catheter/IV/PICC line, and hook me up to TPN feeds. All feeds will be given through the IV and it will give my COMPLETE digestive system a chance to shut down and heal it's self (or that's the idea).
But, with knowing that part of my disease causes vital organs & body systems to shut down/ stop working, maybe that is already happening and the TPN feeds will be a good thing.
My brain is going 100 different places all the time. Thinking that maybe if I stay at home, get worse, then go to the hospital, they will take me more seriously. Thinking that the pain is too great to keep going. Thinking that my body is shutting down, and I have a birthday in less than 3 weeks, and I can't see myself making it that far.
The light at the end of the tunnel is gone. The support that I once had is gone or is fading. The medical stuff has been going on for a year. I am exhausted. My body is exhausted. I don't know how much longer I can go on like this.

I know that I have many prayer warriors out there, so I come asking for my warriors to pray. Pray that I can make it though, pray that something can be done, pray that I can get relief from my pain, pray that I can get the nutrients I need.

Getting Worse

I am getting worse, and don't know what else can be done.
My stomach is shutting down. Because of that my naseau has come back. But, I cannot physically throw-up, so I can't rid myself of the naseau.
I am going to the surgeon next Monday to discuss removal of my gallbladder, getting a new feeding tube put in, and doing something with my stomach.
Also, the botox injection in my esophagus DID NOT work. I am still having trouble swallowing my food and with it getting stuck.

Thankfully, I have finally found a pain med that controls my pain and is not that expensive. But, I am eating significantly less.

Please pray that the surgeon will be able to do something next week, so I don't have to wait.

No Surgery this week

Well, I had to cancel my appt. with my surgeon this morning because I was in so much pain. I have re-scheduled for next Monday. Another big problem is that I have been getting very naseauous lately and more often.
I don't think that the botox in my esophagus worked, since I am still having issues with my food going down or getting stuck.

But, this week, I am going to try and do some things that I haven't been able to do, like deliver the last of my Christmas presents, and I might even work a little too. I have a friend who had a baby last week, and is needing some help.

Please pray that the naseau will go away and that the botox will start working.

Also, my blog has been featured in the magazine called "Serious.Life.Magazine"

Is there anything else that can be done?

Well, I have started to take a turn for the worse again.

First off, the pain has returned with a vengenace. I am on my pain med, which is Dilaulid, and to give you an idea what kind of main med that is: it's about 10 times as strong as morphine. Morphine is what most people get after they have had surgery. I am on pills, and although I have requested liquid form from my Dr. he won't give it to me. If I had the liquid kind I could put it in my tube, and it would get entered into my blood stream and stop the pain faster. My Dr. said I could crush the pills and make it into a liquid by adding sugar and water, but didn't tell me how much of each to add, so fo now I will stay on the pills, till I go back to my Dr. in mid- Feb. for a check-up, unless I get worse. So, for that please pray that the Dr. will give me the liquid form.

I have had to cancel all my activites and other Dr. appts this week, because I can't drive on the pain meds, and I've been in to much pain to leave the house.

Second, the pain has been located in my intestines and stomach area, which means that something is wrong. I called to make an appt. with my gastro Dr. and the first available wasn't until Feb. 2nd. I was not happy, especially since I had spoken to the office manager and he said that he could get me in withing the next week. If I'm not better by Monday, I'm calling the office manager back. I had originally called the office manager because I wanted to switch Dr.'s because my GI had told me at my last visit that he doesn't know what else to do for me and that there is nothing else he can do. It's very disheartening to hear that from a Dr.
I have lost my appetite, and should be doing my tube feeds, but I can't motivate myself enough to connect myself to it again, since I have been doing so good for these past few months. I know that I will need to connect eventually to keep my nutrients up, but I just can't imagine going back to it.

Please pray that I can start wanting to do my tube feeds and pray that I can get an earlier appt. for my GI dr.

Third, the botox in my esphagus is starting to wear off, and it shouldn't be. The Dr. put double the dose in this past time, in July, and it should last 2-3 years, but it's only been 6 months. Swallowing foods is becoming increasingly difficult and more painful. My mom wants to go back to the Dr. who did it in St. Louis, but I remember him saying that if the botox didn't work, than he'd put a feeding tube in, and I already have that. So, I don't know what else he can do.

I don't know what else anyone can do. I have heard of 1 case of a person's esphagus being removed completly, and the small intestine being stretched into a new esphagus. That's very drastic, and I'm not there yet.

Please pray that my pain will either stop or something can be figured out. Pray that I can get in quicker to see my GI Dr. Pray for my body, as I being to start to relapse again, that it will stop and get better.

Marvelous Monday

Today has been a good day, even though I never left my house or got out of my pj's. We had a cold front blow in last night and it dropped the temps, 20-30 degrees. Yesterday the high was 85, today it was 65. There is not a cloud in the sky and the sun has been shining all day. It's a little windy, but not bad.
This week is still looking good. All that I know of is that I have theraphy on Thursday, and the Carrie Underwood concert on Friday. Tomorrow is my best friend's 20th birthday, and we were suppose to celebrate yesterday, but I was having a really bad day. Hopefully, we can celebrate next weekend.
I am feeling some better than yesterday. I've not eaten as much today which gives my esphagus time to rest. I slept late this morning, and than took a long nap this afternoon.
We had some guys out to fix some of the panelling on the side of the house and the chimney.
Pizza is being delivered tonight, I have a new Wii to play, so I am off to enjoy the rest of the day.

Update on Tricia:
She and her husband are traveling to the hospital at Duke tomorrow for another biospy on Wednesday, as the previous biopsy wasn't enough. Please pray for traveling mercies, and that the Dr.'s will be able to get what they need this time.

The Pain has returned...prayers needed

Last night was a really rough night. I started experiencing extreme pain in my esophagus after I had gone to bed, so I got up and took some morphine, and waited almost a hour before it took effect. I think that the last time I looked at the clock it was well after 2am. This morning when I tried to eat something I felt it getting stuck again, and not going down. All of this to say that it can only mean one thing: the botox is wearing off again, and tube feeds are not far behind.
The only "fix" for my esophageal dismotility is the botox injection that I got in July into my esophagus. We know that it didn't take immediatly like it did in 2006, so I don't know how much actually got taken in and is working.
My pain was actually gone for a whole week, and I loved it. I felt that I was living life again, and wasn't being held behind because I was always in pain.
I am running low on my morphine ( I take it in liquid form straight into the med. port on my tube, so it gets into my system twice as fast).
I am desperatly trying to find a pain management Dr. that will work with me and not try new things, since I am allergic to most of the pain meds.
Please pray that the pain will stop and that I can find a Dr. that will work with me.