A very strange day, indeed

Well yesterday was such a crazy day, I had to write about it. No pictures, you’ll thank me later.

I wanted to make some crystallized ginger. It is SO GOOD in ginger cookies, and it is also really expensive. So I was thrilled when I found this tutorial for making it at home!

I began peeling — this took a while, as I figured it would. During the peeling, I managed to peel off a little skin from my knuckle. Oops! But got a bandaid on that and stuck a fork into my ginger while I peeled it — keeping it further from my hands. This worked great. Finally it was all peeled, and time to cut up the ginger into smaller pieces. I had a few done when all of a sudden I cut part of my finger! It is my left ring finger and I cut part of my nail and some of my skin. My stomach sank and I started feeling nauseated. It started bleeding.

Iwent to get a rag and covered it, put pressure on the cut, yadda yadda. Now I started feeling dizzy. I was worried I was losing a lot of blood and decided I’d better call my husband – I didn’t know if it needed stitches, and couldn’t get a good look at the actual cut. I called my husband and he said he’d call some of our neighbors, because it would take him 1/2 and hour to get home. I hung up with him and was feeling really dizzy now. I knew I should sit down. On my way to doing that, I hit my head on the corner of the fridge and passed out. I came to in the dining room (no idea why or how I got there) and was feeling yucky. I had that cold sweat come over me, and I started out to the front room with my shoes (in case I needed to leave?), when I lay down and puked on the floor.

I can’t remember the last time I puked and DIDN’T puke in the toilet. So that was weird, and gross. A few minutes later Spencer called back to say that our neighbor was coming over. She’s a nurse. I told him I didn’t think my cut was that bad — didn’t seem to be bleeding anymore. I also told him (I think) that I passed out and threw up. He said he was coming as quickly as he could and that I just needed to let our neighbor (let’s call her C) in when she knocked.

C came in and got things taken care of. She looked at the cut and said it’d be fine – then wrapped it up in the rag again. I couldn’t believe the nonsense that this cut had caused, especially when it wasn’t even a bad cut. She got me up on my couch and laying down – gave me ice packs for my head. I was starting to feel better. Then she proceeded to clean up my puke. Yikes, I tried to tell her to leave it and my husband would clean it up when he got home. She said, ‘No, no, I’m a mom, this isn’t a big deal.’ What a sweet neighbor.

And so – I apparently don’t like to see my own blood. Learn something new everyday, right?

a lengthy update!

Thanks for your great ideas on nausea. Things are improved — I met a woman recently with hypoglycemia. She has to eat a small meal every two hours. The more we talked, the more animated she got, saying that this could really help me! I thought it was worth a try. So I eat my normal meals, but eat a snack every two hours. Doesn’t help the headaches, but it does improve the nausea most of the time. Hooray!

I was talking to my sister the other day and she said it had been a while since I wrote/put up pictures on my blog. It’s true. I feel sometimes as if telling you the events of my life is a little depressing. The last five years reads a lot like this ‘We tried _____, it didn’t work. Now we’re going to try _____.’

But nonetheless, there is so much good to tell and I need to continue to update my family on my health (one of the main reasons for starting this blog), but I will also try to write about other stuff going on. Thanks for sticking with me.

What is happening now in the world of doctor’s appointments…I went in Tuesday and we were going to do more trigger point injections (in the back), but talked about it and since they hadn’t been working we didn’t do anymore. So that was good, and we just made it into a followup appointment  about the Botox. The Botox worked for two days and then…nothing. I caught him up on that and we made a game plan for both the head and the back. We wanted to attack the back first, and so this morning we did injections into my sacroiliac joints. I don’t know if you know what the sacroiliac (SI) joint is, but it’s where the sacrum (the very bottom of the spine) meets the pelvis…the bottom of the pelvis are the ilium. Anyways, it’s the biggest joint in the body (interesting, right?), and takes all your weight when you walk and sit. Which is why those things hurt me so much. So he did some tests and found that my SI joints were inflamed and dysfunctional in some way.

The injections went well – these have to be done under Xray, and while I was under there he could see arthritis in both joints (more in the left) and the left was over-rotated. And so, I am hopeful that we have finally hit on something that will help. This should help with the pain and physical therapy should help get my back into better shape. Time will tell!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So I have two really good friends – we get together for lunch every couple of weeks. Last weekend (Wednesday to Sunday) we went to St. George, Utah. Those of you out of state are probably not familiar with St. George. The most important thing to know is that it is 4 hours SOUTH of Salt Lake City. So… warmer.

How about an update?

Well it’s been long enough! I’ve still been around, reading friends’ blogs. Just haven’t felt like blogging for whatever reason.

So you all know I’m seeing the pain clinic for back pain, but that the Dr. feels he can help with my headaches. I’ve been doing physical therapy (for my back) since the treatment plan. It’s been a couple of months of PT and I’m not seeing any results yet. But that’s not the good part.

The good part is this – my pain doc is working on the headache angle and I think we have actually hit on something.

I KNOW!

So we did some (more) nerve blocks, these in the back of my head on the right side. So those were about like the previous nerve blocks, only effective as long as the local anesthesia is working. But that led my doc to think that Botox in the same locations might work. And so last Tuesday we did Botox injections in 3 locations, around the back of my head on the right side. So he said it would probably take a few days to see any results. I waited hopefully… and then on Thursday I woke up, and my headache was much better than normal (on the right side). It still switches back and forth to the left side (where the pain is its normal bad-ness). As the day progresses, my headache gets worse and gets back to its normal levels. It also seems to be affected by not enough sleep and weather (worse before storms). So I’m still figuring out how much it has helped.

But clearly it has had some effect. And that is really good news!

Here is an overdue update on my hair…this summer and fall my hair was normal on top (blondish) and then purple on the bottom half. Here are some pictures for you…

More on the pain clinic.

So again, I have taken kind of longer than is necessary to post about my pain clinic appointments. I have no idea why. I find the whole situation a little depressing. I am frustrated by these new limits; not being able to walk much without pain, stand long without pain, and chairs I used to find quite comfortable I can now get so much pain sitting in. Blah blah – on to the hope and the plans.

I went in last Friday to hear what my pain doctor, Dr. D., had in store. What his treatment plan was for me. I brought Spencer along, for two reasons. 1, so he could hear the whole thing straight from the horse’s mouth and 2, he could ask any questions right then. So Dr. D said that after talking with everyone (pharmacist, therapist, physical therapist), he thought that the headaches were even more of an issue than the back pain. Yes, I said. Well, he believes he can help and would like to work concurrently on the headaches while trying to improve my back. I have my doubts, but I’m game. Of course I spent more than a year at this clinic, trying to help my headaches. There was no improvement, but lots of exploration. Dr. D says he ‘does things differently’ — he would like to try some injections in different parts of my head. Actually sounds a lot like what I did with the last pain clinic doc, but we shall see.

So that’s something I hadn’t anticipated, and while I’m not at all looking forward to the injections (they are incredibly painful), who knows? It just might help.

The plan for my back is this; start out with physical therapy and possibly onto injections (more?!). The problem appears to be two-fold, there is the herniated disc and in the same region, problems with my facet joints. I’m still reading up about this and learning what they are, what is wrong with them, etc. But they are at least part of the problem. How big a part remains to be seen. There are more options (which we discussed) for after PT and injections — implants and other scary type things. Those are off in the future if we can’t find pain relief from the PT and/or injections.

Sorry if this is rambling and/or doesn’t make sense – I slept poorly (again) last night.

His other thoughts about my headaches were…not impressive. My husband mentioned he seemed a little overconfident. I think that’s supposed to inspire confidence, but sometimes doctors actually make me feel less confident about their capacity to help. Also, the winking? What the heck. Ok, so his thoughts were that my medicines were that they were ‘random’ and that there were some that aren’t doing anything and we should discontinue some. Wellllll, subject the first, I feel like maybe he’s forgotten that he’s jumping into a 5 year ongoing situation. This isn’t new, and the reason the meds seem random are that they’ve been added by different doctors – most of them treat symptoms of the problem (nausea, sleep and pain) and not the problem itself BECAUSE we have tried so many preventative meds without success. The few that I’m on now actually help me. I just got off half a dozen meds that weren’t helping me. Pfft. I’m sure we’ll have more discussion on that later.
So then this last Tuesday I went to my first PT appointment. I like my physical therapist, she’s nice and she realizes that I have some idea of what’s going on. I have dealt with the back pain for a long time, and I feel like she understands the importance of my symptoms as well as my limitations. That said, we had our first session and she taught me a few very gentle stretches. I mean gentle, easy. I’m supposed to do them three times a day. After I got home from my PT session, my neck and upper back was hurting. Also, the headache across the back of my head (tension HA that goes with my back hurting) was worse. But I figured that maybe I just needed to keep at it and things would improve. This turned out to be wishful thinking, and a day and a half into it, I was still dealing with this extra pain. No relief; extra pain. Soooo I called and left a message for her Thursday, she hasn’t returned it yet. I decided on my own to discontinue the stretches and hope the extra pain would at least go away in time for my *next* appointment, this coming Tuesday. My neck still hurts quite a bit.

That’s it! That’s my update!

**********************************************************************************************************************

On a COMPLETELY unrelated note, have you seen the Droid (phone) commercials? I’ve only seen a few hundred. They are pretty good, as far as cell phone commercials go. I was going to put a video in,  but I can’t find one that includes the section I’m talking about. At the VERY very end, in tiny print at the bottom of the screen, it says that Droid is trademarked by Lucasfilms. Lucas trademarked the WORD droid. That is pure awesomeness. Do you think that means they are getting royalties from the sales of the Droid?

Wow.

I’m totally impressed by that.

time out from vacation…

for another update on health.

This one is all about my back. Friday I saw my orthopaedic specialist (spell check says that should be Orthopedist) — this was my followup with him regarding the cortisone injection.

We discussed how it went, how badly it went afterward, and so then it was onward to the future. Basically he referred me back to my physical therapist. If you’re sitting there thinking, wait, isn’t that who referred you to the Orthopedist? you would be correct. But nonetheless, he says he thinks I will be best served by core strengthening exercises in neutral positions.

For the record, I was doing those before the pain started… in any case, I’ve been doing the revamped version since I got it. And somehow the pain is still here. Not only that, it is shooting down my legs more often and today even went down my arm! How’s that for a new trick.

I asked my ortho dr. about my concerns – trouble I was having walking/limping, and etc. He said better (for me) to walk correctly than comfortably (i.e. try not to limp even if it feels better) and that he didn’t have many suggestions beyond that. He recommended craniosacral therapy, but didn’t know much about it and could not recommend any providers. He said the PT could (she did). Still, doesn’t instill a lot of faith when this is your recommendation. You really think this is going to help? Hmmm…

So today I was back to the physical therapist. Thinking we were in for new exercises or something. No, she said we’ve basically taught you all you need, just keep challenging yourself to do better every week. She had the name of a craniosacro…ligist? and gave that to me. She also mentioned that going to the pain clinic was a good option.

When I got home from my Ortho appointment last friday, I could see where this was going, and just about came undone. It is looming before me — I’ve been through it once and so I can see the similarities all too well. This is becoming A Problem No One Knows How to Fix. I guess it’s been that all along, I had just hit on a kind of a solution myself for 9 years and had the audacity to think that was it.

So although I am less than impressed with what I’ve read about craniosacral therapy, I do know the people at the pain clinic well and have hopes that they could help me there.

The UNDONE feeling is just…that I don’t want more pain. If there’s one thing I don’t need, it’s more pain. Another situation to deal with, another group of symptoms to monitor, and all the while more pain. Of course everything now has to interact with migraine meds and chronic migraine needs. I woke up this morning wanting to throw plates against a brick wall and scream. I didn’t….but I still kinda feel like it.

an update, at last

I don’t know why I haven’t been blogging — I”ve had time to, just no desire. It seems that I too often have bad news to share instead of GOOD NEWS!

There is goodish news on the headache front – my appointment with Nearby Fantastic Headache Specialist (NFHP) finally came around. This was for a 2nd opinion. So at last I go to see her – I had only seen her once before, a couple of years ago. I loved our appointment, and felt good about going back to see her and work with her! However, her next available appointment was 6 months away. To me, that’s 3 months of wasted time.
Follow me on this really quick: it takes 3 months to have a real trial of a migraine prevention drug. So then the next 3 months until I could see her would be wasted. I realize this is assuming the prevention drug won’t work — but let’s be honest — more than 4 years so far of ‘not working’. So I’m not being pessimistic, I’m being realistic.

So this was the impetus for me heading to the Chicago clinic in the beginning – not being able to see my NFHP. Feeling like I needed better care than I was receiving. SO.

I finally got to meet with my NFHP and the appointment went really well — not only was she listening to me, she was asking questions and UNDERSTANDING. She has migraines as well. Hallelujah. Something that I really liked was that we’re getting (slowly) off the medicines that aren’t doing anything to help. She believes in doing one thing at a time – I also have found this is important. Otherwise, if something works (or makes something worse), you don’t know which med it was.

All this to say I feel more comfortable with her – my NFHP – than I did with my Chicago specialist. I’ll refrain from listing the things I didn’t like about my Chicago specialist. That’s another post in itself.

So that is the good news about the headaches – I feel better about seeing this doctor. The bad news is that I can’t remember the last time I slept through the night. This is the deal – every night – I get to sleep, this always takes a while. Then I wake up 4 or so hours later. After getting back to sleep, it’s touch and go. I’m waking up, I’m tossing and turning. All morning. Until I give up and get out of bed.

And so. Onto the other, New Problem.

The new problem is back pain. Since December, my back’s been hurting again. This is an old injury, again another post in itself (maybe this is why I didn’t want to blog, too many long stories?). But it’s been under control for NINE LONG YEARS with Pilates. I do Pilates mat exercises every morning, I was trained nine years ago on the reformer, etc. It was great.

After on and off physical therapy that wasn’t working, I was referred to an orthopaedic specialist. He took an Xray and then decided he wanted an MRI for more detail – an MRI shows nerves, muscles and bones whereas an Xray (obviouslys) only shows bones.

So the MRI comes back and showed what he thought we would find. I have a herniated disc – that means it’s bulging and the disc itself is torn. The disc fluid is leaking out and causing inflammation because the body’s antibodies are attacking the fluid.

Tomorrow I have a cortisone shot, and my physical therapy exercises and Pilates exercises have been adjusted accordingly. Keep your fingers crossed for me.

The Saga of the Itch

So this week has been normal in all respects but one: I hae been itchy. Very itchy. I have had over 100 mosquito bites on my back (at once) and this is worse. It’s been mostly on my stomach, but sometimes the itchiness will hit on my neck, shoulders, back, arms… you get the idea.

I’ll get to itching, and I wish I had sandpaper instead of just my fingernails.

So that is the itching, and it appears to be a side effect (or mild allergic reaction) to one of my medicines. Good heavens, it has been ridiculous. I have talked to my doctor in Chicago, as well as my pharmacist and a few nurses in Chicago. The truth is no one knows what is causing it, and there is no rash. Good grief, as though I needed another mystery? No thank you.

It’s been going on all week. Thankfully it’s not like the pain (which is still all the time), but it comes on in the late afternoon and gets the worst at nighttime. Benadryl helps once I can’t take it anymore.
It’s more a matter of figuring this thing out. It’s not good, and we don’t know (yet) why this has been happening.

new hair…again. and of course, headache talk

The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription. –Norman Cousins

well, i got an email back from my doctor, and i have a decision to make. i can either go the agree to the way my doctor wants to go (trying another MAOI, which includes another hospital stay) or ask to go in another direction. i also responded back hoping for more help with SLEEP, so my fingers are crossed that he’ll write back again soon with some solutions or suggestions.

i got my hair done today — went in asking specifically for please! no! red! my husband is a redhead. i can’t have reddish hair without it looking extra fake next to his… unfortunately, even after 3 processings of brown, the (previously blue-black) portions of my hair are a coppery shade… thankfully, most of it is still blonde. there are just streaks of the coppery color.

no need for condolences — i’m ok with it for a few months. mostly i just thought it was funny that i ended up with exactly what i asked them NOT to do. sometimes that’s how it goes, right?

gah

i officially have a sleep PROBLEM. yesterday i was able to take a 2 hour nap. awesome, right?

right.

not like i had a lot of other stuff to do or something…

so you’d *think* i’d have slept like a baby last night, right? for hours and hours. i wish. the tragic truth is that i slept soundly until 4 a.m., when for some reason which is not apparent *to ME*, i woke up and couldn’t get back to sleep.

so sad.

has anyone else had experience with insomnia and an MAOI? i’m hoping against hope that my doc will get back to me soon and he’ll help me improve this situation. seriously, this sleep thing stinks.

i’ll be back with less complaining soon.

Pain — expands the Time — by Emily Dickinson

Pain — expands the Time –
Ages coil within
The minute Circumference
Of a single Brain –

Pain contracts — the Time –
Occupied with Shot
Gamuts with Eternities
Are as they were not –

I didn’t sleep last night. not just didn’t sleep much….i didn’t sleep at all. d’oh. we went to bed at midnight, and then by 2 i hadn’t gotten to sleep. i felt like it was too late then to take a sleeping pill, i didn’t want to ‘throw off my sleeping schedule’. ha! if i could tell me then when what me now is facing! i’m hoping to take a 4 hour nap and still get to sleep tonight….my sleeping schedule is down the tubes. ah well. you do what you can. i’m sure all of you who have been new mothers are just chuckling right now thinking, ah it’s just been one night…get over yourself…

i feel like i’m moving in slow motion — and i’m nauseous and good heavens it does not do good things for my migraine, that’s for sure. they say the relationship between sleep and migraines is not well understood, but let me tell you; i understand it well enough. if i don’t get 8 hours – things are getting ugly. that’s just the (unfortunate) way of things.

my dear husband made me some pancakes for breakfast to settle my stomach, and went off to work. so i’m going to try and get a little bit of sleep! we’ll see how it goes.