29 July 2014

Pain: 2Yes, 2. At least, as long as I’m careful not to push it, I can manage to keep the pain to a minimum. Also, I’ve managed to ditch the tylenol, ibuprofen and gravol. Hoping to ditch the sleeping pills next. Can’t talk about it much right now but it’s nice to finally have something for this.

On the 21st, I had an appt with the spine guy, where I received a temporary back shot to help deal with the back pain. Then, on the 23rd, I had an appt with the pain clinic which was also (somewhat) helpful. It was there that I received an RX for cesamet, which was well-intentioned but unhelpful. Cesamet is a synthetic THC usually used for severe nausea and it';s true that I did not get nauseous, but it didn’t help with pain and, in fact, left me with a headache sort of hangover. Plus, it lasted only about 2 hours, as opposed to the 5 or 6 I’m experiencing now. So, that is a no.

Managed to get back to two walks a day. It’s not entirely pain free but the pain is a hell of a lot less. I still have to make sure that I don’t overdue it as I can still hurt myself but it;s nice to get out for those walks, I’ve missed them.

Chest rash is still present, and the rash looked to be starting up on my forearms but it’s eased back for now.

22 July 2014

Pain: 5Yesterday, I had a bit of an emergency meeting with the spine doc (not the surgeon, just the spine specialist) due to my latest spinal injection not really taking. I had an emergency shot of something or other in my back so I feel quite a bit better. At lest the peripheral pain is greatly lessened. I hope to cut that pain number in half today, after a walk. I see the pain clinic on Wednesday, so we’ll take it from there.

Sternum rash has been especially bothersome – I’m hoping that drops off soon.

9 July 2014

Pain: 7.5Been a while since I’ve checked in here, mostly because it’s been rough. My back shot doesn’t seem to have taken as well this time, so I’ve got quite a bit of back pain and of course all the peripheral pain that goes along with that. Of those, the migraines have been the worst. Summer is finally here, however, so there has been some relief. Also, I’ve added additional medication (which I can’t mention here yet) which has worked wonders on all symptoms – back, hips, joints, head, referred pain, so that most days I can take that pain level down as far as I want it to go. I can even be completely pain free but it does tend to make me dumb, so I try to just take it down a notch.

The one pain that has been getting worse has been my right side upper abdominal pain – the lower liver/pancreas/hepatic flexure thingie. That has been fairly brutal. I had hoped that going gluten free would clear that up. Magical thinking, perhaps, or just hopefulness. Feeling a lot of concern. I’ll be seeing doctors on the 21st and the 23rd, so hopefully I’ll have more steps then.

8 June 2014

Pain: 7.5Not doing too well. This is kind of why I am so late in delivering an update – I was kinda hoping I would feel better.

I have a sneaking suspicion that my last spine shot may not have taken, or not done as much good as hoped, at least in the peripheral pain department.

Getting brutal migraines on a nearly daily basis. Starts with an ache/pain in the right side of my neck and then, usua;;y within a few minutes, migraine. Sometimes I can ease it off by a few hours by forcing a nap (gravol!) but it’s going to hit me at some point in the day.

Back pain and joint pain have been rough as well, although I am forcing myself to walk, even if what used to be a lovely stroll has now turned into a torture device that wipes me out.

Right side abdom pain has been pretty unbearable too, right in that hepatic flexure/bottom of the liver/pancreas way. Like someone with bony fingers is digging in and wiggling around in there, giving a good squeeze every once in a while for good measure. The pain there has kept me awake a lot of nights, or woken me up after an hour or so. The TMI is below…
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*TMI*
Bowel movements have been yellow and mostly it has been liquid. Yellow is not good, Nope. Doc says I’m “fine” but that sure as hell doesn’t seem fine to me.

25 May 2014

5

Good! It’s amazing how good you can feel when you don’t feel bad anymore. Yeah, that sounds weird, I know. Back shot is done and the aftereffects – migraine, local back pain – have eased back.

Surgeon took in T4,5,6,7, and 8, and did a really nice job on them. Lots of good stuff on the right side of the spine, so I’m not getting any of the peripheral – referred – pain across my back, down my right arm, right shoulder, right side of my neck and yeah, those brutal wicked migraines on the right side of my head.

As for all of those points mentioned, they were in full effect for the week before the shot, with my pain level hovering somewhere around a 9. Not nice.

So my back feels better. That is good.

Joints are still feeling pretty awful, with ring fingers on both hands being the worst, along with my index toes of both feet. The toes have an odd sort of thickening, maybe inflammation? Meh, who knows.

The not eating gluten thing has been going quite well, with the yuckier GI symptoms easing off. The back shot at the T8 level has eased off the right side abdom. pain as well.

Went for a walk yesterday without too much pain. Nice!

8 May 2014

Pain: 8.5Yep, still rough. Weather, cold, whatever the hell it is. Blargh. Been having really huge migraines of late, at least 4 this past week alone. Neck/shoulder/back pain. Joint pain in all of the usual places. Left side hip pain has been brutal. I’ve tried just walking it off – guess you can imagine just how well that’s worked out.

The no gluten thingie has been interesting. Right side abdom. pain continues but I don’t seem to get the ‘attack’ that I would get previously. No terrible stabbing pain before BM’s. No diarrhea, and no ungodly evil smell from hell. Finding GF stuff more satisfying than wheat flour. Example – eating wheat flour left me with an unsatisfied feeling, as though I had never eaten ‘enough’ although, by serving, I clearly had. There was ‘nothing’ there. Which made me want to eat more, oddly enough. Now, I eat a piece of GF bread, or a small scone, and I feel good, like I’ve actually eaten something. No gut pain afterward. It’s been good. Picked up some xanthan gum for my GF baking, to replace the elasticity/rise factor of gluten, so I’m hoping it will make it even more satisfying.

I had tried to drop the last of my dairy but failed miserably. All I had left was the milk I use in my tea/coffee, which is about 1/2 to 1 cup a day, if that. Tried almond milk, which proved to be a miserable failure, so I’m going to stick with my milk and deal with it. If it becomes a problem later, I’ll try again to drop it.

Spinal injection set up for 22 May, which is nice, and the spine doc has offered to give injections between the surgery version, to tide me over if the going gets too tough.