An update from desert

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desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 5/4/2011 8:59 AM (GMT -6)   
Hi my friends. It's been a while since I posted an update and a lot has been going on, so I wanted to share with you. Some of you may already have bits and pieces from chats, so it may not be all that new for everyone.

When last I posted I think I was just going to see some surgeons about a possible fusion surgery. Well, it turns out that surgery cannot help me because the damage is not to the bones or disks of my spine. So I'm happy that I don't have to go through surgery, but also a bit down to finally have the word that my injury will never be cured. It seems so silly that I pushed myself too hard just once and I will pay for it the rest of my life.

After that I went back to my PM. But now I'm not there to get procedures ordered by other doctors. Now I'm there for long term pain management. That change has been a long time coming, but I feel that it's probably a good thing for me. My PM has always been my best doctor and I trust that he will be able to help me all the more now that I'm officially his patient. I had hoped to never be on long term medication. It's a place I know none of us want to be. But it looks like that's going to be my only real option now. I figure though that many people live having to take pills everyday, so I'll manage it too.

I know I'll probably never live without pain, but it's been 11 years now and I'm getting pretty used to my constant companion. So I find myself comparing what I'll have against where I am now, not against before my injury. I think this is good. If nothing else, I'm happy and hopeful to get some of my life back. At the least this means I'll soon be done with the stopgap treatments meant to tide me over until the next specialist appointment. Those were like trying to stem the tide with a broom anyways. Their effect was noticeable, but didn't really do enough to help me in any useful fashion.

I'm scheduled to meet with one more specialist: a neurologist to check for any zebras that might have been missed. That's my newest medical jargon, it means uncommon problems. Essentially we have tests showing that I have damage to my C7 nerve root, but we want to make sure there isn't a root cause that we missed. On the bad nights I wonder how I'll make it until the 12th when my appointment is scheduled. But on the good nights I can see it is finally getting close. I waited this long, I'll make it for a few more days.

Unless the neurologist finds something we're not expecting, my PM has said he'd like to start me on Neurontin or Lyrica to see how those work for me. He said that I could tell the neurologist those and get prescriptions from that doctor if i wanted (I think so that I could start them earlier). But if I end up on medication I'd rather have it ordered by my PM for a couple reasons. Primarily because the neurologist takes about a month's advance notice for appointments where my PM is only a few days. I think that may be especially important when starting new medications that may not work for me or have too strong of side effects and so need to be changed.

I've been incredibly busy at work lately. It's not easy without sleep and putting in all the extra hours. But I love my job and we just started a new project that could really be a huge leap up for the company. I hope that whatever treatment I start, it will quickly allow me to get enough sleep again.

I do have an interesting story for you all: We had a few higher-up visitors to the office a couple weeks back. Since I've been working on some stuff that's pretty front and center, they came by to see some of the most recent features I'd coded. While explaining my focus to the other visitors, our external producer grabbed me by my shoulders and massaged my upper back and shoulders like you would expect a manager to do for a fighter. It was just a jest meant to indicate that I had a lot on my plate but that he was confident in my abilities, and such a gesture would normally have been completely acceptable around our office. But wow did he ever find the wrong spot to press on shocked. He had no idea of my injury, but luckily our internal producer was there and I think fairly jumped out of his skin to stop him once he saw that I had clenched my eyes closed and stopped moving. It wasn't funny that day, but since then I have found the humor in the situation.

An advantage to not having to go the surgery route, is that the family cruise to Alaska is back on for sure for this summer. I'm seriously looking forward to that one. I've been to Alaska before and loved that. And I've been on a cruise before and quite enjoyed myself there as well. I think these two favorites will mix quite well smilewinkgrin. When I next see my PM, I plan to ask him what activities he thinks would be a good/bad idea on the cruise. For example, my family thinks I'm nuts for wanting to go kayaking since that's how I originally injured myself. I might also ask if PT would be a good idea to help safely rebuild some of my strength for being more active since I know I have lost some in chasing the infamous low pain day.

Overall, I think 'happy and hopeful' is a pretty good description of where I am these days. And that's not a bad place to be. I'm content for now. All the more so that I finally get to share good news with my family here :-). Although I know it's always acceptable, I was getting a bit tired of only posting rants and downer information.

Wow, this post is long. But I had a lot I wanted to share and I've typed it at least three times before, so I had worked up a pretty long list of topics. Oh well, hopefully you just skipped to the end if you got bored.

I hope everyone's having a great, low pain day! And thanks for listening. Off to work with me.

-Jeff

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/4/2011 9:29 AM (GMT -6)   

 

      Good morning desert!

          What a refreshing post! I loved reading every word of it.! Thank You! Thank You! wink

    In a way, I would say count your belssings that you will not have to endure a surgery and have a 50/50 chance of a good outcome at best. I'm also mindful, that you are not offered the chance of a positive outcome in the end of sorts. However, it is a relief to know that you have a good PM to help carry you through the battle of CP. Quite a few members are still searching for at least that opportunity.

      I congratulate you on the positive frame of mind you seem to have found. That too is rare when faced with little hope. We are sincerely happy for you, and pleased that you're coworkers at least put forth the effort of understanding. That is worth a ton comfort!

      Again, what a great read for the members here, and we appreciat you posting this wonderful update. Also thank you for splitting up the paragraphs so that the members can read with ease. wink

       Awesome job!.....and it lifted my spirits!

          Thanks!

    SE wink

 

 


Moderator Chronic Pain Forum

Weekly Quote!
"When the character of a man is not clear to you, look at his friends."

Post Edited (Screaming Eagle) : 5/4/2011 9:51:44 AM (GMT-6)


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/4/2011 10:32 AM (GMT -6)   
Hi Jeff!

So good to read your post, really.  You write really well, by the way - and, like SE, I really enjoyed reading it :)
 
I only have a second on here right now, as my little ones need me - but I think many of us have been there in realizing there is really not more to be done, and that long-term meds are going to be our future.  It does take a bit of time to reach acceptance for this.... but, over time, you just learn to adapt.  I agree w/ you - you seem like you've got an awesome PM and I would definitely have that doctor be your prescribing doctor. 
 
Alaska cruise?  That's my dream - and, I too, would go :)  Ok, the kayaking part makes me nervous (only due to your previous injury) - but that's the mom in me.... but - whatever you do - I hope you have a wonderful time.  It just sounds wonderful.
 
Well, I gotta get off of here.  I enjoyed chatting w/ you that one night.  And I REALLY enjoyed your post here - so try to post more when you can.  I admire the positivity I hear in your tone.... I think you are doing the best to just accept the situation for what it is - and move on w/ life.  Which I guess is what some of us just have to do, right?  I know it can be hard, but - again - I admire your attitude, Jeff.
 
Hope you are having a good work day.  Hope to hear more from you soon.
--Tina

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 5/4/2011 1:25 PM (GMT -6)   
Hi Jeff

I enjoyed chatting with you and your post was absolutely wonderful. It was broken into paragraphs and the topics were interesting. Alaska cruise, you will have to take alot of digtal pictures and post them. Alot of us would love to see highlights of your trip. it sounds great!

Im happy that you are content. Stay in touch with us. I am looking forward to chatting with you again.

soft Hugs

Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/4/2011 10:09 PM (GMT -6)   
Hi Jeff

It's great to her such a positive outlook on your part. It's good to read a positive post too. I'm sorry that you will have to rely on medication, but you sound like you've accepted it. I'm glad that you don't have to have surgery. Like SE said, it's only 50/50 that it will help with pain.

The Alaska cruise sounds wonderful. My husband would love to go on that. He lived in Alaska for a few year in Juneau and he loved it. He really wants to go visit, but I don't think we'll be able to.

Well, thanks for posting an update. You take care. I hope you're having a low pain night.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9255
   Posted 5/5/2011 1:15 AM (GMT -6)   
Hey Jeff~

It's is great news that you don't have to do the surgery route. Often if you do get relief with back surgery the pain will eventually come back in many cases. But to trade that for something incurable isn't much of a winner, is it?

I do admire your attitude. Can you spread a bit my way some days. It is hard to keep your chin up when the pain is beating you down. You are a survivor!

Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
~~~~~
Against the assault of laughter nothing can stand.
Mark Twain

desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 5/5/2011 10:29 AM (GMT -6)   
Hi SE, Tina, Betsey, Loretta, and Chutz. It's great to hear from all of you!

I never knew the chances for that surgery being effective were so low. Makes me even happier that I'm not doing it. Surgery was never an option I wanted anyways, just a last ditch chance for a cure.

After I first injured myself I only saw an orthopedist for a few years. His specialty did not match up and he was really just guessing the whole time. My first PM didn't even really speak English and would communicate by pointing to parts of his textbooks. Although those experiences were less than fantastic, it did allow me to appreciate just what a huge help it is to have good doctors.

Realizing that the pain is never going to go away is a tough one. Having friends here who can understand that has been a huge help to me. I know I would be in a much worse state if I hadn't found all of you wonderful people. This is really I think the biggest sticking point for most people to understand. Most people see pain as a hurdle and figure that no matter how tall it is, if you can get over it you're done. Having pain that doesn't eventually go away is simply outside the experience range of most people and so they cannot understand it, even though they may try very hard.

I am very excited about the Alaska cruise. Even if my doctor tells me I need to take it easy and not do any of the really active stuff, I know I'll still enjoy it. Alaska is one of my favorite places in the world and I am looking forward to getting to visit again. I would take every one of my friends here along if I could. That would be quite the adventure :-). You can bet that there will be a lot of pictures to share, though.

Thank you all for your well wishes as well. They worked, by the way. Last night I was able to sleep for several hours. Although I missed what has quickly been becoming my usual nightly chat with my friends, the sleep is going to be very useful for facing the day. I'm sure I'll get the chance to chat with you all again very soon and I look forward to it. I hope you're all having a great, low pain day!

-Jeff

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 7:32 PM (GMT -6)   
Hey Jeff...

I'm glad you got some sleep last night.  After chatting all week..... and staying up WAY to late, I finally got some sleep, too.  :)
 
Take care, and it was so good to read your posts.  See you soon - probably in chat :) :)
 
--Tina

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/5/2011 8:17 PM (GMT -6)   
Hi Jeff and Tina. I'm glad you both finally got some good sleep. I did too. I had been going thru sleeping, waking up, sleeping, etc. etc. Last night, I finally slept good and didn't do that.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 8:41 PM (GMT -6)   
Hi Miss Loretta tongue
 
Glad you slept, too.  I get to that point where I literally hit a wall and sleep has to happen.  Sounds like we all were at that point!!
 
Our bodies have to sleep to have a chance to somewhat "heal" - it's so important.  That being said - I feel the insomnia coming on again..... ahhhhh!  It's a vicious cycle.
 
Take care all,
--Tina

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/6/2011 9:29 AM (GMT -6)   
Jeff,
it's certainly good that you don't need surgery..and wow you can get into your pm in in
a few days that's incredible, definently go the medication route with your pm in case
you have a reaction, seems like you got things covered...Hope you enjoy the cruise
and take your camera and get some great shots..hopefully you'll see some whales
swim by, well wishes to you, healing hugz and hopes you can get a low pain day soon..
Keep us posted on the neurologists appointment...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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