Where Has Hadena Gone?

I survived my book talk on Tuesday.  There were a few moments of doubt on my part, as I slugged down several extra strength Tylenol so I could sit comfortably.  Aside from that two hours, I’ve pretty much been doing as little as possible.

First, let me explain the process, because most people are thinking they are like shots.  They really aren’t.  They mark the spots with pen where they are going to insert the needles.  Then they insert all the needles… all of them.  This time it was 18.  The doctor then moves from needle to needle with the medicine.  The syringe is screwed onto the needle, the medicine injected, the syringe unscrewed, and onto the next.  This is followed by a repeat of that same procedure on all the needles.  For 45 minutes, I laid on my stomach over an X-Ray machine that helped them guide the needles in and avoid bone, as they moved to each needle, injected, and etc.

Monday, I got injections for the leg pain that I suffer due to nerve irritation going through my SI joints.  The injections do help.  This time though, they made me sick.  Monday I ran a fever, was nauseated, slept most of the day, and hurt like you would not believe.

They hit my sciatic nerve on both sides this time.  That was interesting.  When the needle was inserted, my leg drew up all on its own and I couldn’t do anything about it.  So the injection went into a tensed leg on each side and felt like molten lava.

Those sites are still bothering me even today.  Tylenol is helping, but not much.  I can’t take NSAIDS, which sucks, because I think ibuprofen or ketorolac would help a lot more…

As bad as the sciatic injections were though, there was one worse.  There is a large nerve that runs through the pelvis from front to back.  To get to it, they stuck a needle in the crack of my ass. Holy shit.  It was unexpected and it hurt like hell.  No molten lava sensations, which was nice, but it feels like they tore everything down there.

It did teach me a few things:

  • My doctor has a sense of humor and I did tell him I was going to kill him in a book, which he was fine with.  It’s nice to have a doctor with a sense of humor.  I try very hard to be stoic when having any sort of procedure done and that means cracking jokes.  Having a doctor that jokes back is really nice.  I did yelp though when they did the three big ones.  However, I still got a pat on the back by the nurses and the doctor who said most people cry or scream during the procedures, so my tiny yelps were easy to deal with.
  • Injecting into large nerves hurts more than joints and smaller nerves.  And the recovery time seems to be longer.  I’m still having trouble getting comfortable when I sleep and standing/sitting is awful.  Bending and lifting is pretty bad.  I keep walking and doing what I’m supposed to be doing, but the healing is not going nearly as fast as the first time and it’s only those three injection sites that are still bothering me.
  • Whatever the hell is wrong with me responds to large doses of gabapentin.  I’ve mentioned before that sometimes I wake up and I just feel broken in half or the simple act of getting out of bed makes everything hurt. Literally, getting out of bed can be painful in my arms, back, feet, ears, it’s weird to have that happen.  However, after getting the injections, I stopped taking the gabapentin and found those familiar aches and pains coming back.  So today, I took a few that I had and found that tonight, I’m not having the pain I normally have that I just attribute to getting older.  I’m beginning to believe my doctor might be correct and a rheumatologist is in order.  This was further confirmed by X-Rays of my hands recently that showed no arthritis in them and yet, they feel and act like I have arthritis.  I also have issues with my body interpreting being cold as being in pain.  The gabapentin seems to have helped that.  My inflammation levels fluctuate a bit, sometimes they get high, but usually they are just above the normal range… So I don’t have a clue what’s going on and the gabapentin helping those pains is strange.
  • The only time Tramadol actually relieves my pain is when I mix it with gabapentin.  I don’t know exactly what the interaction between those two drugs are, but together, I can be completely pain free for a few hours.  The gabapentin also seems to reverse the side effects of the Tramadol.  Since it is a mild narcotic that also works by adjusting serotonin levels, I have some problems taking it (mainly I lose the ability to sleep when my serotonin levels are messed with – this is why my anxiety is treated with benzodiazepines and not antidepressants).  Taking the two together, makes me pain free and sleepy, which is something I desperately need right now.  Before the injections, I wasn’t sleeping because of the pain in my legs.  Now the pain in my legs is calm enough for me to sleep, but the injection sites are keeping me awake.
  • I am still in the accepting phase.  The injections are here for the long haul.  I’m going to continue to need them for a long time.  My other option is cutting nerves and that doesn’t sound fun to me.  I’m hopeful that in the future, I will learn to deal with them.  I have some pretty strong determination in that department.  However, when they wear off and the pain comes back, I also find myself depressed and wondering how long I can take it.  I knew I was going to have arthritis pain in my hips and the pseudo-arthritic condition in my hands.  I did not expect the chronic pain that I now have in my legs or the rest of my body.  I am looking forward to being able to take Lola the Destroyer back to the park for walks again.  I miss those.  It’s bonding time for us and she enjoys it and as long as the injections are working, it doesn’t cause me more pain.  It actually lifts my mood tremendously.
  • Finally, this means I haven’t been working as much as I’d like.  I need about 10 chapters on Flawless Dreams and this week has mostly been a bust in the writing department.  I’m hoping by Friday the injection sites are no longer bothering me and I can actually sit down long enough to write and stay focused.

Ok, so that’s me this week.  I just have to remind myself that it gets better… the leg pain is minimal and the injection sites will heal soon.

Does Anyone Actually Listen?!

I’m not asleep because I’m in pain.  Tonight, my team was short players and I had to play every round for the entire evening.  My lower legs once again hurt.

I’ve had blood work.  All my vitamins and minerals are fine, so that isn’t the source of the pain.

I take 100mg sumatriptan migraine medications.  Sumatriptan is a vasoconstrictor and 100mg is the highest dose of sumatriptan one can take at a single time.  Vasoconstrictors work by narrowing the blood vessels all over your body.  Side effects include things like feeling cold, feeling stiff, feeling like you aren’t getting enough blood to muscles when you use them.  It can also cause heart attacks and strokes.

My orthopedist today said he didn’t know what was wrong with my lower legs, but he suspected it was vascular in nature.  Symptoms include pain, swelling, redness, a feeling of warmness, and spots.  I have one of these symptoms; pain.  However, if I’m having trouble getting the blood out of my legs, vasoconstrictors should increase the pain.  Especially 1oomg sumatriptan because that’s some serious stuff and yet, it doesn’t.

That alone seems to rule out a vascular problem.  Oh and the lack of other symptoms associated with vascular problems.

Furthermore, the cortisone injections into my SI joints and nerves actually got rid of the pain for about a month.  If I had a vascular problem or a deficiency of vitamins or minerals, cortisone shouldn’t have relieved my pain.

Maybe it was a placebo effect.  It isn’t impossible.  Except I didn’t expect it to work.  Placebo effect happens when you expect a medication to help.  I’m not sure I have ever heard of a case in which a patient expected a treatment to fail and yet found relief from it due to the placebo effect.

I’m supposed to have physical therapy tomorrow.  It did wonders for my back.  It isn’t doing shit for my lower leg pain.  As a matter of fact, the activities that we do for my physical therapy make the lower leg pain happen.

My physical therapist keeps telling me I have to give it time, it’ll work.  However, after four weeks or whatever, I’m not seeing any improvement in my legs, only my back.  My orthopedist says he doesn’t know how to fix the problem because he can’t figure out what the problem is.  I doubt it’s psychological in nature, but I’m not sure how to prove that.  I doubt even I would subconsciously make the decision to have this sort of pain.

Tonight, I want to cry again.  Mostly from the pain.  On a scale of 1 to 10, it’s about a 15.  I’ve had ovarian cysts rupture that didn’t hurt this badly.  The only way I can describe the pain is it feels like my lower legs are being crushed and the bones are being broken.  It’s a sharp, throbbing pain that takes a few days to go down.  And once again, I feel like no one is listening to me…

Gaining Control

Yesterday, I managed to stand up for myself.  I forced the specialist to finally realize exactly what I was going through.  All the pain, all the self loathing, all the indifference, all of it caused because there is something wrong with my back.

My pain is disproportionate to my problem though.  Yes, my L2 disk is in rough shape.  I have scoliosis, which is kind of surprising because I’ve always tried to have good posture and I didn’t have it as a kid.  In my case, it’s “sway back,” meaning my spine curves inwards too much.  And after a second look at the MRI, my L1 disk has a small bulge in it.

I do have inflammation in the area, but not much.  Most of it is actually centered around my SI joints (which are part of the pelvis) and the nerves that run through that area.  It’s those nerves that have been causing my leg pain.  Which I’m happy to report, decreased after the injections into that area.  I didn’t realize it last week, but I had to play all night, normally that makes me want to scream and cry when I get home and all the next day.  My legs did hurt afterwards, but not the bone crushing pain I had been experiencing. So, we may have to increase the frequency of those considering the difference it made.

But what about the other pain?  The one in my back.  The one that has been constant for over a month.  The one I can actually touch.

Yep, I can touch a spot on my back, in a strange place that may or may not be my spine (I can’t tell, which is weird) and send severe pain throughout my body.  There’s no lump, no knots, no indicators that there’s something going on there, except that’s where I feel the popping.  And the popping also causes extreme pain.

So, I finally broke down and told the doctor “Hey, I can touch this spot and it nearly cripples me.”  He did some tests.  I have weakness in my right leg, weakness that isn’t explained by the SI joints or nerves, or the small bulge in the disk, or the disk degeneration process.  And it gets worse when pressure is put on that specific spot.  When he gently pressed where my fingers indicated, I yelped and jumped away from his touch.  He might as well have stabbed me.

I was fitted with a brace.  It’s a nice one.  It feels like the bottom section of a good, strong corset.  I’ve always loved wearing corsets with true spines in them.  They do so much for my posture and as a woman, they do a lot for holding up the jiggly bits and taking the weight off our shoulders, when I wear them, I slump my shoulders less.  This eases the stress on my neck, shoulders, muscles in the front of my chest, muscles around my shoulder blades… It’s just better.  What was I talking about?

Oh yes, the brace… It’s to help the scoliosis.  I did notice my back was a little less stiff after several hours of wearing it.  I wish it was a full torso brace, but that would just be a corset by another name.  But my insurance might pay for it that way.

I also got Tramadol.  I’m not a fan of this narcotic pain reliever.  it doesn’t seem to work well.  However, we have decided to check for bone inflammation.  I do the test Friday.  We want to minimize the pain without minimizing inflammation.  Tramadol is one of the few narcotics not mixed with acetaminophen.  While acetaminophen isn’t awesome about reducing inflammation like NSAIDS or steroids, it does reduce it some.

Then it’s off for nerve testing!

So, tonight, I have some relief and tomorrow I’ll get a little more.

Depression?

I’ve been having a hard time lately.  My mother and I have Jude the Great Nephew every day.  I do what I can to assist her, but sometimes I feel like it isn’t enough.  Doing chores around the house is sort of like torture.  I don’t enjoy anything I do; not even darts or playing with Lola the Destroyer.  All of it because I hurt all the time.

However, the big one: I can’t find my funny and I’m struggling to get anything written, let alone anything funny.  This is officially interfering with my every day life.  Something has got to be done.

I don’t feel “sad” like one excepts when the word “depression” is mentioned.  I feel indifferent and blah.  I feel worthless because I can’t do much.  A trip to the grocery store causes my spine to start popping and once that happens, the very act of walking is a challenge.

Yesterday, I cancelled plans with my best friend.  Plans I had been looking forward to for months.  If I was a crier, I probably would have cried.  Unfortunately, I’m not and that’s part of the problem.

If I cried every time I went to the doctor’s office, they might do more to manage my pain.  If I wasn’t so pain tolerant, they might also do more.  However, I can tell them how much I hurt, but it doesn’t sink in because I can still stand up and walk around and considering how much those activities hurt, I shouldn’t be.

Most days, I’d put my pain at a 9.  I feel nauseated by the time evening arrives because I hurt and I’m exhausted.  And it’s more than just my back that hurts.  My legs hurt.  My feet tingle.  Neither feels like it should be able to support my weight.  But my 9 and everyone else’s 9 seems to be different.  Most people can’t function at a 9.  I can.  I can function at a 10.  I cut the tip of my finger off with a pair of scissors, it got a 4 despite the fact that I don’t really have a fingerprint left because of the scarring.  The last ovarian cyst I had rupture was 15 centimeters by 9 centimeters.  Considering an ovary is about a centimeter, it was huge – it got a 6.  It dumped something like 800cc of fluid into my abdomen.  I did go to the ER, but only because I knew it had been huge and I was worried it had damaged something, like an ovary, when it ruptured.  However, I’ve gotten used to cysts, even large cysts, on my ovaries, so most of the time, I don’t bother with the ER or even a doctor.

Oddly, I’ll bawl over a papercut though, but I didn’t even flinch the last time I dislocated my shoulder.  One of those things hurts a whole lot more than the other.  I even put my shoulder back in by myself with little more than a grunt.

Yet, I feel like a junkie looking for a fix when I go into the doctor’s office and start demanding narcotics (I can’t take NSAIDS and steroids kinda bother my stomach too).  So, most of the time, I don’t advocate for them.  I ask about alternative methods to handle the pain.

However, the alternative method this time is doing nothing.  I have an appointment this morning.  I’m actually at it as this blog post publishes.  Hopefully, I can find some sort of relief soon… I need to advocate better for myself.  I’m great at doing it for others, I don’t know why I can’t do it for myself.

I Didn’t Need A Study To Tell Me That

Recently, I read a study about chronic pain sufferers, including migraine sufferers, overusing over-the-counter medications like acetaminophen, ibuprofen, aspirin, and naproxen.  I didn’t need a three year long study to tell me that.

Society thinks most chronic pain sufferers are drug seekers.  So, most of us do not get prescribed medications that might actually relieve our pain.  I know at least one clinic in my hometown has a notation in my chart that I’m a drug seeking patient.

The problem with that is, I’m not.  I actually do not like the effects of narcotics.  It reminds me of having vertigo.  I take meds to stop vertigo, why would I willingly abuse medications that cause similar effects?

Unfortunately, when I have a migraine, I’d shoot heroin if someone told me it would help (and it was safe).  Triptans work best for me, but I have trouble taking triptans anymore.  I’ve over used them through the years because of chronic migraines (which is a form of chronic pain) and have developed some heart problems as a result.  Preventive treatment has yet to work for my migraines, but I’m still searching for the right one.

I have trouble taking ibuprofen and naproxen.  I’m starting to have trouble with aspirin too.  It all makes my stomach hurt.  I can still take acetaminophen, but I take a lot of it and eventually, it’s going to become a problem as well.  What will I do when I reach that point?  I don’t really know.  I try to think that far ahead, but then my head starts to pound and I start popping pills and all those thoughts about my future become a blur.

However, I know I’m guilty of overusing over-the-counter drugs simply because I don’t always have enough migraine meds to last a month.  Or sometimes, I just get tired of popping the tablets for migraines because I feel like they aren’t going to work any better than an Excedrin, so why waste the prescription.  Worse, my migraine meds right now are Fioricet (non-codeine, non-caffeine – my blood pressure actually lowers with certain types of migraines which is why the vaso-constrictors worked so well) which means I’m taking a barbiturate and acetaminophen.  I do try not to exceed the daily dosage restrictions, but there are times I just lose count of how many I’ve taken or how long I’ve been taking them or how long it has been since my last dose.

When I have a migraine, time is not my friend.  Clocks might as well be in Aramaic.  I can’t add or subtract time even with a digital clock (this is how I overdosed on codeine as a teenager when my former doctor was convinced that migraines were just a result of puberty and would only prescribe Tylenol 3 for them).  So, I know that once in a while, I have to fail miserably at following the dosing instructions.

It is terribly unlikely I’m alone in that overuse of OTC meds and I didn’t need a study to point it out to me.  Maybe the problem isn’t really us though, maybe it’s the thinking of the medical community.  Once or twice a month, I have a migraine that just will not go away.  There is nothing I can do for it to make it better (for the record; things like exercise, pushing through it, and physical exertion make migraines worse… Not sure you have a migraine?  Do some jumping jacks.  If it didn’t get worse, it’s a headache, not a migraine).  But now one of the urgent care centers considers me a drug seeker, so they will not do anything but give me anti-nausea medicine and tell me to take a nap.  I get insomnia with migraines.  Forget the narcotics, give me a sedative and make me sleep for the next 18 hours or so. That would probably help.  The last time I went, they gave me Phenergan and 800mg ibuprofen tablets after I told them that ibuprofen makes my stomach hurt so badly, I cry and curl up in the fetal position.  Yeah, that’s exactly what I want with a migraine.  I filled the Phenergan, I didn’t bother with the ibuprofen.

I guess I really need to work on becoming a Jedi so I can control my brain with my brain (meditation also does not help a migraine and can make it much worse, because the focus becomes consumed by the head throbbing, which creates anxiety, which increases the heart rate, which worsens the migraine, which causes a migraine sufferer to focus even more on the pain, etc, etc, etc)

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