Alternative medicine and me

It's starting to look a lot like Cripmas...

This is one of the several posts that has been sitting unfinished in my blog queue.  I've tried to clean it up to make it more current, so I apologize if there are any weird timing-based issues with the writing that I missed.

One thing that comes up a lot when talking openly about one's illness or disability is the question "have you tried [insert therapy, medicine, supplement, herb, exercise]."  It's a question that I know many times comes from a place of love and sincere desire to help.  I've written a little about it before on this blog, and other people have discussed this more succinctly than I have (for instance, Toni Morris from Psychology Today).

I used to have a pain management physician's assistant that was into complementary and alternative medicine, so sometimes my prescription would include the names of various supplements to try.  Magnesium, GABA, valerian root, melatonin, fish oil, l-glutamine, l-carnitine, B-complex....some on an empty stomach, some only with food, some at mealtimes, some before bed.  Every time I try something new, it involves a financial commitment along with a commitment to making a constant rattling noise as I move around my day with a horde of pills, all in the name of hurting less and functioning more "normally" in society.

I also tried several things in a book called From Fatigued to Fantastic, which is geared towards folks with chronic fatigue and fibromyalgia.  My pituitary birth defect has a lot of fibromyalgia-esque symptoms (and many folks with hypopit get diagnosed with both disorders, although a rheumatologist told me that fibro was a diagnosis of exclusion, so I couldn't have both).  I didn't try everything in there, partially because of finances, and partially because of the time commitment many of those suggestions would involve.  A lot of the author's suggestions overlapped with the supplements my pain management PA was suggesting, so I tried with the desperate hope of avoiding the knife.

None of this helped me bypass surgery.  I don't know if any of it really actually helped, partially because I tried too many things at once.  I've learned that some of these things do make a quality of life difference (B-vitamins when my energy is lagging, melatonin, magnesium, and valerian root for making me sleep better).  Some of these supplements are hard to gauge effectiveness on (like CoQ10 for brain function and memory...memory problems being a huge problem for many folks with chronic pain, and something that makes my scholarly work incredibly difficult).

This is my non-food breakfast of champions

Since I made a sizeable order at Puritan's Pride for some of these experiments, I keep taking a lot of them.  I did enough research that I feel confident that I'm not doing any harm to my body, and most of these things are vitamins and minerals (the bottom picture shows several fish oil capsules, vitamin D, several magnesium pills, a B-complex, & two different amino acids).  I'll see what happens to my quality of life when the supplements run out.  I just need to be content in knowing that I at least tried.

It's all part of my "keep on keeping on" plan....just keep trying.

Two weeks old

A few things that make recovery more tolerable

Two weeks ago I had my spinal fusion surgery.  It's been surreal.  Sometimes it feels like more time has passed, and sometimes it feels like I was just released from the hospital a few days ago.  I've realized that those feelings of a weird temporal nature are pretty closely tied to how much pain I'm in, or how well I'm getting around, or how much I'm sleeping (I still sleep a lot, but I've not managed to sleep more than 3.5 hours in one stretch yet).

I am slowly getting better.  I haven't had problems with my left leg since the surgery....not a surprise as the surgeon said that nerve was absolutely crushed.  I do have pain sometimes where that nerve starts, but it's sporadic instead of constant.  I figure that's probably a sign of it healing.  I am having some issues with my right leg with spasms and numbness, but pretty minor compared to everything else.

Most of my pain is in the lumbar area of my spine or in my left glute, and it's been interesting experiencing the different kinds of sensations.  Bone pain versus nerve pain, numbness at the incision site, extreme itching on my back, stiffness in my legs, a "stuck" feeling in my low back.  The part that I'm finding the most frustrating is that I'm still relying on pain medication to get me where I'm at.  I was really hoping that I would be tapering to a lower dose by now. 

Although the pain is still barely controlled, I try to stay positive and think about the things I am able to do.  I usually walk around my home without the walker.  I can get up and down my front stairs without a huge increase in pain (although it will wear me out).  I can stand long enough to make simple meals.  I can sit in my desk chair to type blogs.  I managed to go to class on Monday for 2.5 hours (which felt good at the time but ended up being way too much as I spent most of yesterday in bed, in pain, and cranky).  I'm probably going to part of my class tonight, but tell the professor that I won't be able to be there for the entire 3 hours (I'm aiming for 1.5).

There are a few things that have really helped me get to this point in my surgery recovery.  Several of them are shown in the photo I have on this blog post, and several of them are suggestions from the Spine-Health.com surgery forums.  First of all, the satin sheets have made getting in and out of bed exponentially easier (particularly with the restriction of "no bending, twisting, or lifting").  They also feel delightful even when I was restricted from taking a shower!

The bathrobe and microfleece blanket are just snuggly, although the bathrobe is fantastic post-shower to help air dry one's body (terry is recommended, but was out of my budget).  Showering, even with the assistance of a shower chair and changing the shower head to a detachable one with a hose, is still a time consuming, pain-filled, and exhausting activity.  Having a bathrobe that can help you air dry helps to keep one from breaking the "no twisting, no bending" rule by towel drying.

Slipper socks with grips on the bottom were part of my usual at home lounge wear before surgery, but have become more important while I recover.  I have hardwood floors in my home, and slipping would be very very bad.  The grips also help get traction for changing position in bed with the satin sheets.

As for the other big thing that has helped (other than occupational therapy gadgets like the shower chair and grabber) is my iPad.  It's a refurbished first generation model that I bought last year because of my worsening spine issues, but it has become a huge help.  I have a medication reminder app, I have Netflix and Amazon Prime to entertain myself, I have audio books for those times where the medication makes it hard to physically read, I have DropBox for the pdf's I need to keep up with my schoolwork.

******

I see the surgeon for my first follow-up appointment on Friday.  I fully expect to be scolded for going to class without asking him first, but he knows I'm a driven individual.  There is a part of me that wishes I could have taken a leave of absence from my PhD program to focus on healing, but I think having my classes to work on (albeit independently so far) have helped keep me focused....and have kept me from trying to push too much physically (which I'm having trouble with anyhow!).

Hopefully the next two weeks bring more positive changes!

(Not quite) the end of the semester

Serenity & Bela, my fur kids

It's been a heck of a couple weeks, which is why I haven't posted for a while (believe me, I have six unfinished blog posts sitting in BlogSpot!).  Bela, my cat that was seriously ill, spent a week in the veterinary ICU but has been back home since the Monday after Thanksgiving.  We're still fundraising to help with his veterinary bill (as it ate my surgery & endocrinology savings), but it looks like the little guy is going to pull through just fine.

Right before his illness, I found out that I need to go through with the spinal fusion surgery as I've exhausted all my options.  In the meantime, I've been doing physical therapy to try to get as strong as possible (although there's a huge difference between what I can physically do because of muscle strength & flexibility and what I ought to do because of pain & nerve ramifications).  I'm pushing to get the surgery done over winter break to hopefully not derail my doctoral program.  It's scary, and I don't even know what kind of fight I'm going to have with my insurance company because the orthopedic clinic won't get preauthorization before I have a pre-op physical (but the general practice clinic didn't want to schedule a pre-op before the surgery was scheduled *facepalm*).  I also had another unsuccessful appointment with a pain management medical professional, with the doctor interpreting "I'm doing so poorly that I'm taking incompletes in my classes" as "I'm working on my doctorate and must be doing FANTASTIC."  So, I'm left with the same pain management regime that's not working and trying to get surgery done as soon as possible.

In the midst of all the medical & veterinary issues, I've been trying to keep on with school.  It's been hard as I've been in too much pain to be able to drive to my research site (a 40 minute drive), so I'm taking an incomplete in that class.  My other class has been difficult, but I'm one 5-page paper away from being done with it.  It's been extremely difficult to think through the combined haze of pain and medication, and thinking from a sociological lens is even more difficult.  I know I'm not doing my best work, but right now I'm just hoping for sufficiently finished.

I've been trying to give myself some room to heal while still getting through my work, but I have to be careful because my job and health insurance are dependent on my student status....if I don't have the right percentage of completed credits, everything could come crashing down on me.  I'm hoping that getting my masters at the same institution as my doctorate may help, especially since I'm pulling nine credits from last year into my PhD plan of study, but only time will tell.

Thank you all for your support during this extremely difficult time in my life.  I'll try to get some unfinished posts put up in the next couple weeks as I work to get surgery scheduled and my classes finished up!

Being acutely ill while chronically in pain

Me & a friend's cat Mao

The beginning of this week I had a rough 36 hours of life.  I'm usually someone that doesn't get sick very often (something I'm thankful for because of my congenital health problems), but when I do I'm usually really sick.

I was starting to feel a bit under the weather on Sunday night with some vision issues and a headache that was creeping up.  I managed to get it pushed back for a while with some strong coffee and water at my favorite Irish pub with friends that evening, so I didn't think much of it until I had trouble sleeping that night.  I was also becoming increasingly unable to deal with light & noise, and by 6am I thought I had an alien trying to break out of my skull through my left eye (the eye I have functional vision in).  I'd been laying on the couch with an ice pack on my forehead hoping this bugger would subside, partially because the position my head was tolerating was causing my spine to protest loudly.  I was in a tug-of-war with my own nerves.

By 8am, I was delusional from pain, nausea, and sleep deprivation and thought that I could try to go to work even though I could barely manage to get my teeth brushed.  My SO woke up when my second alarm went off, noticed that I was in agony, and told me that I needed to call in sick to work.  I started crying, partially because I hate calling in, partially because that would leave my boss alone all day, and partially because the necessary movements to make a phone call were all excruciating.  I finally manage to send an email to my boss on my cell phone because the small amount of light hurt less than calling then conversing.

Fast forward to Monday evening and I was finally feeling well enough to talk to my SO.  I find out that I've had a migraine.  It's not my first, but it's the first one that I've recognized as such.  I had a migraine on top of some pretty bad spine pain.  I think the worst part of the whole experience was honestly the nausea as I wasn't able to take any pain medication to either get the migraine or the spine pain knocked down to something more manageable.  I felt completely powerless, completely attacked by my own physiology, and I was completely bed-ridden (well, couch-ridden as the living room is the darkest room in my home).

This was one of those times where pain scales can be completely useless for folks with chronic pain.  I have a friend that has chronic intractable migraines on top of other health concerns.  Another friend has had issues with cluster headaches.  I've had discussions with them and all sort of other people about how pain scales really do not properly represent the global impact that chronic pain has on a person.  The usual doctor's office pain scale is damn near useless with its stupid smiley-to-frowny faces (pro tip: some days the more I'm smiling, the worse I am).  Some scales, like the Kip Scale (thanks to my friend Mir for showing me this scale) do a better job of inserting one's ability to cope at a moment in time.  Even the wordy scales like the Comparative Pain Scale can't capture the whole picture.  If you're going to saddle me with a chart, I may start bringing this chart from Hyperbole and a Half as these seem to be the best "I'm in pain" stick figures I've ever seen.

Pardon the pain-scale rant/tangent.  I'm glad that the nausea passed to I could actually get fluids, food, & medication in my body.  I'm glad that I was able to go back to work (although office lighting the day after a migraine is definitely not happiness).  It was a very scary place to be in though, mainly because of my complete inability to do anything about any of the pain, whether the acute migraine or the chronic spine malarkey.

Thank goodness this happened before the start of the semester, and thank goodness this happened before my vacation to GenCon!