End of the line... how to live comfortably ever after?

Hey guys,

This is it then. The search for a practical medical solution to my disability has come to an end because of the fact that all routes to find a remedy has proven to be dead ends. After the worst spill I had 2.5 years ago the verdict is final... I'm done. There's no way a surgeon can wield his scalpel of +5 healing and get me back on my feet again and any kind of physical therapy (2 years without notable progress) has proven to be epic fail too. So, there's nothing left for medical science to do then to make my life at least comfortable to such an extend I can take care of myself, which has proven to be somewhat difficult at times. Maybe even find a job for a few hours a day... but that's still up in the air, because "keeping me comfortable" is a function of the twinevil of trial and error.

Throughout my ordeal of the last two years, I have been kept on a baseline medication that took off the sharp edges of the pain but at the same time did nothing for comfort, and I realise that my erratic behavior because of that has been a point of irritation in the community. I'm not going to apologize for it. Feel what I feel and we can talk on equal footing. As it is, you have no way of knowing or experiencing what I'm feeling. You just don't know. All I can say is that my behavior was in no way intentional, or personal and all I can ask for is you understanding that.

So what does "keeping me comfortable" mean? Basically, the search is now for a mix of meds that allow me to function with relative dignity and grace while ensuring my independence of more intensive care remains a given. To that end, my life has to become a semblance of living without pain, but as long as the proper medication and their dosage hasn't been found it's a matter of experimenting.

I have a persistent burning pain in my left side, between the bladder and liver that radiates to both thighs and up the spine to between the shoulders. I have wobbly legs and a distinct limp and can't bend over, backwards and have a severely limited radius while bending left and right. Lifting stuff hurts like a bitch. I can't walk for a stretch, I can't sit down long and I sure as hell don't have a single night of uninterrupted sleep. Basically, I'm in the outer ring of Hell.

Maybe you guys remember the escalation I experienced on Christmas Eve, that had me on Oxynorm initially. That stuff gave me good vibrations and was a good first line med, but it was ultimately too weak. I was scaled up to Oxycontin, but that gave me anxiety attacks and hallucinations, cold sweat and involuntary twitches, next to sparking some nasty moodswings. I was taken off Oxy and put on Butrans 5Mcg/hour dermapatches. Works very well, but not for the length it is supposed to work, 7 days.

Obviously Butrans is not strong enough to keep me a happy puppy!

Now I have been to the specialist today and we settled on a cocktail of medications with what a baseline can be established. I was told that I should not expect results within the first three weeks and most certainly not marked or landslide improvement in my condition. My current cocktail can be the wrong kind of meds, or the right ones but either too heavy or too light. Since the specialist and I agreed to start conservatively, we expect that in four weeks the dosage on some meds needs to be scaled up. I can also phone in if my new meds fail to have effect et-all.

Seeing as I need to keep a journal of my med-intake and effect so I can better relate any changes in my condition for the evaluation in four weeks time, I'll keeping daily updates in my blog here. I'll also keep reporting on my gaming of course! It's in no way intended to provoke pity for me from you guys, but yeah, I would lie if I would not appreciate support. (Which is a different thing.) So, will this meds cure me? No. They won't. They're purely intended to make my life bearable and keeping me on my feet so I can function in the day to day. I won't get cured, I won't improve and the meds are forever.

I'm starting on the treatments as of today too. To this end I'll have to introduce a timeclock into my life, because the meds demand that. From now on, I'll be going to bed at 23:00 and rising at 07:00. I must also introduce a meal rythm of breakfast, lunch and dinner. I never was a great eater and I usually sustain myself on one meal a day. So, I'll be having 3 light meals, I guess. The meal rythm, I suspect, will be the hardest thing to do. Also, no more gaming all-nighters! Oh well.

Here are my meds:

• Butrans 5Mcg/hour Dermapatches, one works 7 days.
• Amitriptyline HCI Actavis, 10Mg, for the nights.
• Diclofenac Na CF 50mg, 3 times a day, after every meal. <= the dark prince of pills in my situation, it means I have to restructure my life.
• Pantroprazol Actavis 40Mg, in the morning.
• Paracetamol Apotex 500Mg, 4 times a day 2 units.
• Lactulose Fresenius, 30ML 2 times a day.

So, how will my day look on this schedule?

• 07:00, I'll be having breakfast. After that breakfast I take 1 Pantropazol, 2 paracetamol, 1 Diclofenac and 30ML of Fresenius.
• 12:30, I'll be having lunch, followed by 2 paracetamol and 1 diclofenac.
• 18:00, dinner, followed by 2 paracetamol, 1 diclofenac and 30ML of Fresenius.
• 23:00, lights out, preceeded with 2 paracetamol and1 Amitriptyline.
• Every seven days a new Butrans Dermapatch.

Today I start the treatment on the 18:00 mark. I'm mighty curious to see how I'll feel four weeks from now. And to think that I might even start to make plans for the future makes me a bit giddy! I'll never be able to do sports again (I was a competitive endurance walker), or do the jobs I'm used to do and I will never be able to work for full days anymore, but the thought of being able to do day to day things relatively painfree seems like the holy grail right now.

Thanks for hearing me out! =)

===Update===

18:00, Dinner. Potato/sourkraut mash and a sausage. Taken after: 2 Paracetamol, 1 Diclofenac and 30ML of Fresenius.

===Update===

23:00, lights out. Taken: 2 Paracetamol, 1 amitriptyline.

=Diclofenac gives me nausia, but the leaflet included with them notes that as a general side-effect. If I still feel nausiated after a week's time I must contact my specialist. But I have Pantropazol and Amitriptyline to lessen the effect next to their painkilling intend. Amitriptyline should also help me sleep, and stay asleep for the intended 8 hours. I'm also a bit out of it, also due to the Diclofenac. I tried to play some WoW, but I couldn't focus on it. In stead, I have watched Monster vs Aliens which I hadn't seen before. I enjoyed the animation and the effects, but the story was lost on me, lol!

Thanks for the comments, guys!