In Pain, but still Thankful!

[DanielleP924]

First, let me start by wishing everyone a very happy Thanksgiving. For me, even though I'm going through a great deal of pain, I am so thankful for my family. It's just going to be my hubby, and my kids for Thanksgiving dinner today and I'm actually totally okay with that. My in-laws were going to travel here from Indiana, but since I'm having such a bad time right now, we all decided it wasn't the best plan this year.

My wonderful and amazing neighbor and friend is actually cooking the whole meal for us since I can't do it this year. She's cooking everything we always have and then some. It will be lovely to eat and not have to worry about the cooking this year. If I know her, she'll insist on cleaning up afterwards. I'm hoping she'll join us, because she's part of the family now.

Anyway, I've been having a lot of trouble sleeping because of pain. I'm hurting so bad and today I overdid it, because I wanted to get some things done around the house. I'm waiting to get into Mayo Clinic so they can do a work up and decide what's best to do for my ruptured disk and other issues with my back. I just want the pain to stop already. It's been the absolute worse it's every been since I ruptured my L4-5 disk. I'm having some issues with my bladder because of it and if I'm up to much, my feet are going numb. Definitely not cool.

Sometimes, I feel so alone, because of the pain. I know you know what I mean. I can't drive right now and am having to take pain meds around the clock to try and stay on top of the pain. I find it's best to take the meds at regularly scheduled intervals in order to provide the best possible assistance to my pain. The meds certainly do not take all the pain away, but at least it takes the edge off and usually helps me to sleep. I hate being on pain meds, but I hate the pain more. I am praying with all my heart and sould that I can get into Mayo Clinic quickly and that they will be able to fix my back. I have this fantasy that they will go in to fix the ruptured disk and find all the things that have been causing my pain for the past 8.5 years. Wouldn't that be absolutely amazing????

I get so darn frustrated, because there are so many things I want to do and so many things I see around my house that I'd like to do, but I can't do any of them at the moment. I guess it's quite likely all those things will still be there when I'm better. I hate not being able to do what I want. I even took a medical leave of absence from school, because I just can't concentrate on the work, with all this pain and all the meds I'm on. I hated to do that, but I just don't want to mess up my grades or GPA, which is currently a 3.83 after 16 courses. I have 7 left to go to get my BSHS/M.

Well, it's nice to have a place to vent. It's nice to know there are people in the world who totally get what I'm going through. I'm definitely thankful for this website and all of you! Despite the pain, I hope you all can have a wonderful Thanksgiving holiday.

Now, perhaps I can go back to sleep for a while....

Regards,
Danielle

[Patti]

Danielle...

Happy Thanksgiving right back at you. I awaken every night at 2:45 a.m. having that freakin (I am really thinking of another word here ) hampster-wheel, mind- racing, mind-numbing thoughts about where all of this is going to lead. Pain meds. The love-hate relationship. Doctors. There simply has to be an answer and a course of treatment that will work. Outcomes. I must change my belief system. What was, doesn't mean what is, or what will be. Hindsight has proven to me time and time again the best form of insight. If I think back to this past spring, so desperate in my thinking. Non-stop hopelessness. I would rather not wake up some mornings (except God sometimes doesn't allow me to sleep so that screws up that plan ). To where I am now. Still hurting, but with a new team, and a new plan. Shots. Didn't work before, but the last round helped "a little." For me, hope is about change. If I don't believe that things will change, I will lose hope. When I was one-year out from my L 4-5 fusion this past April, and still in way too much pain, I went to a prominent surgeon in this area. (not the one who did my surgery). He recognized the problem at the level below, but said, "if I go back in, I may make it worse. Sorry."

All summer, I felt like there was no way out.

Then things started to change. I wandered into a meeting one day, strutting the "back-patient waddle," that, hip-locking, somewhat hunched-over, posture that we all have and ran into a guy who I had seen around and he looks at me, doesn't really know my name, and says "L-5." Turns out he's a chiropractor who does myofascial scar-tissue release and is very, very smart with the whole bio-mechanical thing. He works on me a little, does a gentle adjustment of my SI joints and is one of those guys who is not anti-surgery, but looks at the whole picture as a puzzle. (he had a neck fusion). He consults with an osteopath at the non-invasive back clinic where I had been seeing another doctor who gave me several epidurals with no relief. I see him and he sets out a course of treatment designed, through ruling things out, to locate the "pain-generator" consisting intially of doing some facet joint injections and possibly leading up to a discogram.

Fast forward to the October of this year. My GP, who is an angel and prescribes my pain meds, suggests I go to Johns Hopkins in Baltimore, the "Mayo Clinic of the East." Before making an appointment, I decided I needed a mental health break, and despite the pain, drove up to my college homecoming outside of Philly. There's a line in one of my favorite Bob Seger songs "Hollywood Nights"...that goes "see some old friends, good for the soul." Off I went, 20 pounds thinner then the year before. Scrawny, 54-years-old, in shorts and flip-flops, I wander up to my sorority's beer tent and run into one of my old classmates who I hadn't seen in awhile. I recall that she was a biology major in school, and still drank beer! Very smart, and alot of fun. (interesting, because I was a psych major, and drank lots of beer! but traded all that in for iced tea 18 years ago ) We catch up, and I ask her what she has been doing for the last 30 years..guess what? She is an associate professor of orthopedics at Johns Hopkins! We talk. By Monday she has consulted with one of their top spine guys who is happy to see me, but recommends four guys closer to my home near Washington, DC.

So, I get an appointment with my brand new neurosurgeon. Talk about smart and humble. He carefully reviews my case, all of the films etc. He knows the guy I am seeing at the spine clinic and said they would work together as a team to figure out, through process of elimination, the pain generator, and then fix the problem. What, "no sorry, I can't help you because I may make it worse? No, I am going to diagnose this, and if more surgery is required, it will make you better." I won't get into all the details, and the other tests and CT scans he ordered, but bascially, my fusion of a year ago is solid, it appears as if the level below is the culprit and should have been fused a year ago, but I can't turn the clock back.

What has changed? Everything. Today I still hurt, although the last couple of shots have helped a bit. But the biggest difference is I have a plan, doctors are working together and I have HOPE. Don't give up Danielle.

[Justin]

Hi Danielle,

Happy Thanksgiving! I'm sorry about your pain and I hope your appointment at the Mayo Clinic is fruitful. Congratulations on your GPA! I know how hard it is to excel in school while you're medicated and in pain--the medical leave of absence was a smart move, as school will be there.

We are here for you!
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[DanielleP924]

I appreciate your response Patti, as well as Justin's. It's so good to be able to share what life is like and has been like for me these past 8.5 years. I have been in constant pain; that has never gone away, not even for a minute of these past 8.5 years. Now, with the ruptured disk, the pain is ridiculous!

Yep, I'm up during the night again; or early morning I suppose. I slept from 11:30 pm to 1:50 am. I had to get up for some medication and ice for the back. Finally fell back asleep probably around 2:30 am and back up at 50 am because the pain is sooooo bad right now. Boy did I ever overdue it yesterday and I didn't even have to cook any of the food, which by the way was absolutely incredible! My neighbor seriously outdid herself and my family and I were very thankful for her help. She didn't stay to eat with us, which turned out to be good, because it was nice to have my hubby and kids at the table for an entire meal. We had a very pleasant time together.

I let the kids clean up for the most part, but then I had to put the leftovers away later in the night and clean things up again. I also sat up in a chair for about 2 hours playing cards with my hubby. It was a lot of fun and I enjoyed the time together, but now I'm paying big time. I really hate this! I like to keep things clean and orderly and it pisses me off that I'm not anywhere nears up to that task at the moment. I know things will keep, but I have no idea when I'll be better or even if I'll be better.

My neighbor and I worked out a nice arrangement for the forseeable future. She's going to keep my house clean and neat and fix 3 meals a week for us since I am not up to the cooking at the moment and nobody else has the time. I'll pay for the groceries of course and I'll pay her for her time. She's asked for only $50 a week. Well, ya can't beat that deal! It works out well, because she's actually on disability because of her arthritis, but she still manages to do so much and she desparately needs the money and I need the help, so it's a good deal all around. I just have to make sure she takes it easy as needed as well. I am so thankful for Bernie; she's a Godsend to us. She has absolutely no family and it's just her and her little dog she just got this summer; so we've adopted each other. We've been friends for years, but have gotten way closer as of late.

Okay, well I think my pain meds are just starting to take affect and I'm praying to be able to go back to sleep very soon. Patti, I hope things work out for you and that you are able to find some relief soon. We just need to keep the faith and believe that eventually we'll get better.

Okay back to bed with me; take care....