Outbreak

Recently, I mentioned the Swine Flu pandemic in association with Mothman.  And as I have mentioned many times in the past, I used to work for an epidemiologist.  I loved the work to a degree.  I enjoyed the mystery and puzzle of figuring out an outbreak of communicable diseases.  But not every epidemiologist studies communicable disease outbreaks.  My boss did communicable as well as cancer cluster research and it was cancer clusters that proved to me I couldn’t do the work for the rest of my life.  Even though my boss was quite willing to use his connections to help me train as an epidemiological researcher.

In the very early months of Spring 2009, the H1N1 flu virus mutated and became a much more deadly strain than it had been for 90 years.  The first cases and deaths happened in the state of Veracruz, Mexico.  Viruses and bacteria mutate at an amazing rate.  Most of the mutations are harmless, but every so often, the mutations make the virus or bacteria either more communicable or more deadly or both.

In the spring of 1918, a private stationed at Fort Riley in Kansas reported to the medical bay with fever, sore throat, cough, and other symptoms.  By the end of the day, there were 100 more soldiers in For Riley complaining of the same symptoms.  The flu outbreak that started in Fort Riley, Kansas would race around the globe and become known as the Spanish Flu pandemic.  It too was a mutation of the H1N1 flu virus. 

The Black Death, the Justinian Plague, and the Antonine Plague were all caused by mutations within the bacteria Y. Pestis, better known as Bubonic Plague.  We do not believe either the Justinian or Antonine Plague were communicable person to person (plague rarely spreads that way, it nearly always has to have a zoological host to spread.  However, new research shows the only way the Black Death – one of the worst pandemics to ever appear on Earth in recorded history – spread as rapidly and effectively as it did is if that mutation became communicable person to person.   When archaeologists found a mass grave outside Constantinople what they had really found was a treasure trove of information on the Justinian Plague.  While the bacteria was dead, the bacteria corpses could be studied and was.  Until we found mass graves associated with the Justinian and Antonine Plague, we weren’t sure what had caused them, because accounts of the illness and death that followed did not align with what we knew of Bubonic Plague.  

Before the flu vaccine and people learned about and started practicing better hygiene in the 1940s and 50s.  Flu pandemics used to crop up about every 30 years.   Between 1860 and 2009 there were 5 flu pandemics that killed millions.  Spanish Flu in 1918, Asiatic Flu (H2N2) in 1951, in 1893, and in 1867.  

You don’t need a deadly pathogen to get deadly results either.  In 2003 an epidemic started in China that would become known as SARS.  The culprit, a mutated form of the coronavirus.  But what?  There’s a really good chance that nearly every person who reads this blog post will suffer the effects of some form of coronavirus before the Spring of 2019, because coronaviruses cause the common cold, a disease that may make a person miserable, but it’s mortality rate is basically zero.  

HIV was the same way.  Part of the reason it has been so hard to track down the origin of the HIV virus is because until the 1970s, HIV was not an infectious or deadly pathogen.  Contrary to popular opinion, HIV was known about before it became a pandemic, but it was a non-issue.  Lots of people carried it and there were no side effects from carrying it.  In fact, it was no different than a coronavirus (nearly everyone carries coronaviruses all the time, only showing symptoms once in a while when the virus has multiplied enough to overwhelm our immune system and during non-symptomatic times, it is not infectious).  HIV had no symptoms, no mortality rate, and was carried without problems for decades, so it wasn’t tracked or even talked about.  It was one of the many viruses a human body could carry without ill effect.  Then suddenly, it wasn’t.  What we need to know is whether the virus became deadly while in a human host or a zoological host… that would give us our best shot at finding a vaccine.  Which we may or may not need anymore.

I remember HIV and AIDS being in the news a lot when I was growing up in the 1980s and 1990s.  It’s not anymore and not just because treatments are helping people live longer.  It’s mutating itself out of importance.  The mortality rate and communication rate of HIV have diminished within the virus itself, meaning it’s not all due to awareness and treatments.  

Viral pandemics are more common than bacterial pandemics simply because viruses are more difficult to treat and mutate faster.  Meaning we are more likely to see another flu pandemic than a plague pandemic.

Incomplete Research

The other day I read a study that measured the effectiveness of opiate pain killers against the effectiveness of over the counter pain medicines.  These were the dosing groups; 5 mgs Hydrocodone and 325 acetaminophen versus 1000 mgs of acetaminophen and 800 mgs of ibuprofen.  At 2 hours, both groups had essentially the same pain levels.  The reason I read it is because someone told me if they were the same, why wasn’t I using them instead of hydrocodone.  

Even if we ignore that I can’t take NSAIDs orally, let’s talk about those two different medication doses.  5/325 hydrocodone can be taken every 4 hours for acute pain such as a broken arm.  1000 mgs of acetaminophen coupled with 800 mgs of ibuprofen can be taken every 6 hours.  And there is no room for error, because the maximum dose levels for ibuprofen in a day are 3,200 mgs and 4,000 of acetaminophen.  But and here’s the big thing, let’s say you take 1000 mgs of acetaminophen at 3 pm.  If say you forget the precise time and take another 1000 mgs at 7 pm, you’ve just put yourself in a position to cause liver problem – which might be temporary or might be permanent.  

Same with ibuprofen, if you take 800 mgs at 3 pm and forget and take another 800 mgs at 7 pm, you are running the risk of damaging your kidneys and GI tract.  

This does depend on the health of these organs, but I have a feeling it’s why I stopped being able to take NSAIDs orally quite suddenly.  This may require a bit of explanation.  In 2007, I was working for the Boone County Historical Society.  I enjoyed the job.  It was an event night, which meant lots of little things to be done to prepare and I had a migraine according to my migraine journal, I took 3 – 200 mg Advil before it started.   It should be noted; I can’t keep track of time when I have a migraine.  According to my journal, the event actually started at 6 pm.  Sometime after the event started, but before it ended around 8 pm, I took another 600 mgs because the music being played was making my migraine worse.  

Music events were usually 2 hours with a 15 minute intermission around the 1 hour mark.  Using that information, I can guess that I took the first 600mgs somewhere between 5 and 5:30 pm.  And if I stuck to my normal habit of taking meds while busy, I probably wolfed down a quick bite to eat at the end of intermission and took the second dose of 600 mgs of Advil during the time I ate around 7 pm.  That means I probably took 1,200 mgs of Advil in less than 4 hours.  

Now, this might not be an issue for a person if they did it once, but I’m positive this wasn’t the first time I’d gone over the 800 mg dose limit for 6 hours.  I practically lived on Advil and Excedrin Migraine at this time because I can function on them, but not Imitrix which was my prescribed migraine medication at the time and Imitrix was already starting to cause chest pains at the time.    

I specifically went looking for an incident like this because I got to thinking about it after reading the study and ibuprofen was the first NSAID to be struck from my list of medications I could take, but it should have been aspirin if it had truly been a GI problem.  But, I wouldn’t have to give up Excedrin Migraine until 2013, which contains 200 mgs of aspirin and 500 mgs of acetaminophen.  Aspirin is an NSAID that is much rougher on your stomach than ibuprofen, but I wrote in one spot that I bought aspirin powder while traveling to a dart tournament in 2012.  It’s nasty, but it works fast.  

And as a PS to this, my journal also mentions that I had taken the max dose of Excedrin Migraine that day before I started popping plain Advil.  Meaning my actual total intake of NSAIDs is kind of a question mark for the day, because while Excedrin Migraine says to take only 2 caplets in 24 hours and I don’t know that I always followed that on days I had to work.

The point was, that 1,000 mgs of acetaminophen coupled with 800 mgs of ibuprofen, isn’t actually the same as 5/325 hydrocodone/acetaminophen because it can’t be repeated as often as need be and it is only marginally safer.  Especially since people only think of “days” not 24 hour periods.  I know someone who will argue to their last breath that those max “daily doses” only apply to waking hours.  So if she is awake from 6 am to 10 pm, she will take 3,200 mgs of ibuprofen during that day and do the exact same thing the next day.  And if she has to take any during the night, she says it doesn’t count because it isn’t “day”.    

The Foot Bone’s Connected to the Leg Bone…

I’m back to wondering if I really have CRPS.  I’m preparing for a visit with my pain management doctor and in the process I have been cataloging injuries from my migraine/pain journal over the last 30 years.  After all, everything is connected within the human body.  

Not for the first time, I’ve wondered if the real problem is my spinal cord and my central nervous system by extension.  In April 1988 (I was seven years old), I decided to be daring, I stood up on one end of a teeter totter in my neighborhood park.  One of the neighbor kids was on the other side and I was off the ground as I stood.

And then that little asshole jumped off.  I slammed my wrist into the handlebar and fell flat on my back onto the concrete of the playground.  Rubberized playgrounds weren’t all the rage yet and most parks had their equipment sunk into concrete or asphalt.  This one was concrete.  

In May 1989, I had my first migraine.  I spent three months throwing up and then collapsing onto the bathroom floor every afternoon that summer.  It hit at the same time every day.  Once I collapsed and slept for a few hours, I’d wake up feeling fine until the next afternoon when it would happen again.  Worst summer ever.  

I was told the migraines were due to puberty and I’d grow out of them.  I didn’t.  And migraine prevention medications (Topamax, Depakote, etc) didn’t make them less frequent or less severe.  

In December 1994, I began to experience pain and swelling in my right hand and forearm.  Eventually, that pain would become permanent and would feel like it was constantly being given a small current of electricity.  I was told it was an arthritis like condition as a result of breaking my wrist when I was 7 and I’d just have to learn to live with it.

Over the years it would get better or worse, depending on the time of year, the weather, and what I was doing.  But I never experienced any physical changes in it, no lesions, no hair loss or damaged hair follicles that made the hair look thin or break easily.  I still don’t have those symptoms in my right hand and arm.  Just the pain, it often feels like the bones have been crushed and it gets more intense depending on the time of year and weather and what I am doing.  It also occasionally swells up. 

In 2003, I slipped on some ice and damaged my left shoulder.  I had to have surgery to repair it and I still don’t have full feeling in some of my fingers on the left hand.  And my shoulder often hurts, even when I haven’t done anything to cause it discomfort or pain.  But it doesn’t feel like the bones have been crushed.

Then in 2015, I fell out of a raft while trying to dislodge a canoe from a tree root ball so we didn’t slam into them, capsize them, and drown both women in it.

I started having back problems more often as well as pain in my lower legs.  Sometimes, it feels like the bones in my lower legs have been smashed with a sledge hammer.

I was given SI Joint injections for the first time to treat it.  They worked fairly well.  And we moved to SI Joint injections with Facet Injections in my lumbar spine.  By this time, I was exclusively using Butalbital for my migraines.  It worked better than any of the migraine medications I’d ever taken, except DHE.    

And the facet and SI injections decreased the frequency and intensity of my migraines, the first thing to ever do that.  My neurologist suggested that the reason my migraines had been so hard to treat was because they weren’t migraines in the normal sense of the mediocre understanding we have of migraines.  Perhaps I was manifesting my back pain in my head in the form of migraines.  If so, maybe I didn’t injure my back when I went under the root ball, maybe I injured it in 1987 when I fell from the teeter totter and broke my wrist.  Maybe that fall coupled with the deformity I have of my SI joints due to being born with both hips out of socket, are the cause of my migraines….

Which makes me wonder if the pain I’ve been experiencing in my arms, legs, spine, and now my hip, isn’t possibly related to my spine.  Perhaps those limbs don’t hurt in the traditional sense, maybe the nerves that go to those limbs were damaged at my spinal cord and it just imagines they hurt and therefore sends pain signals to my brain about it.

Oh wait, that is pretty much what CRPS is.  The nerves think they hurt, so they become hyperactive in an attempt to heal themselves… But what if the real spot of my CRPS isn’t in my arm or shoulder or hip or lower legs?  What if it’s in my spinal cord?  Is it possible that all the spots I seem to have pain, aren’t really in pain and it’s my central nervous system (located in the spine and brain) that have been damaged and therefore manifests the pain in other places?  

This might explain why I don’t have visual changes to my skin at my arm, even though it’s tingled and hurt for 24 years.  Could the same mechanism that exhibits itself as a migraine be why I have lower leg pain even though I don’t appear to have CRPS in my lower legs?  Also, could this be why none of the alternative therapies for CRPS have worked?  Could this also explain why Ketamine and Butalbital work for me when steroids don’t?  Both depress the central nervous system.  Butalbital is a barbiturate, a “downer” in street drug lingo.  

Despite having developed sway back as an adult (I did not have scoliosis as a kid) and having two bad discs in my lumbar spine, I rarely have back pain.  I should in fact have it very often, due to the scoliosis and being a top heavy female.  Sometimes, it’s hard not to wonder if the problem is my spine as opposed to the places where I “experience” pain.

Ouch

On Tuesday morning, I had just gotten up and was sitting down at my computer.  I work out of the garage, so of course, my my chair rolls easy enough since the floor is concrete.  I have a tiny LED bar light that connects to a cabinet over my table.  

However, recently I removed the table and replaced it with an actual desk.  It isn’t nearly as long nor as wide as my table was.  Anyway, Tuesday morning, I went to install that light, it has a magnet on the back which is why it goes where it goes.  As I reached up to attach the light bar my chair tilted forward and then rolled out from under me.

I landed with my right butt cheek on the base of the chair, where the rollers are.  It took about five minutes for my right butt cheek to swell up. 

I ended up not getting much done that day.  My pain skyrocketed with that bone head move that did leave a bruise along with the swelling.  It made for a rough day.  

Another Sinus Infection?

The afternoon of Thanksgiving, I started feeling pretty lousy.  Tired, so thirsty, and congested.  By Friday morning, I was thinking I had a full blown cold.  And stomach upset.  Fun stuff.  

I felt crappy all day Friday, all day Saturday, and into Sunday.  I really wanted to sleep the entire time, but my body doesn’t allow for that.  It doesn’t matter how sick I get, my body does not like to lay around in bed anymore.  

Sunday, I did get an hour and a half nap, but that was it, because at that point I had to get out of bed to take pain medication. 

I awoke to a blizzard warning for Missouri….”Excuse me mother nature, you realize it’s only November right?”  

The two are related.  Every time the weather has had a severe change, I’ve gotten sick since September.  Thanksgiving day, November 22, it was 55 degrees Fahrenheit in Missouri.  Friday, it had cooled to the mid-40s.  And then Sunday, a blizzard.

Now in 2004, I had rhinoplasty and a tonsillectomy.  The right side sinus cavity was shrunk, lifted, and the drainage passages out of it were widened.  Why?  Because every time the weather changed, I would get a sinus infection, it didn’t matter if it was Winter, Spring, Summer, or Fall, I would get a sinus infection.  And tonsillitis.  And dreadfully, a sinus migraine that was rivaled some of my normal migraines.

I’ve had one of those this year.  In late September, I got a sinus infection.  For the first three days of it, I had a sinus migraine that was so severe, I couldn’t lay down and I didn’t smoke.  Saturday morning, a similar sinus headache accompanied my “tired” and lousy feeling, which is when I decided maybe it wasn’t a cold, maybe it’s a sinus infection dogging me again.  Perhaps the one in September did not clear up with the antibiotics… 

And that would be on par with my pre-rhinoplasty sinus infections.  I kept a mild sinus infection at all times, one that no antibiotics on the planet could get rid of.  And since this is the first time in 14 years that I’ve had 2 sinus infections in a single year, I can’t help but wonder about it.  

At any rate, I remain sick with a brutal sinus migraine, sore throat, and hoarseness.  By the way, I am done with this Winter.  

Two Things

I read a blog post the other day, that I had written and something jumped out at me, my punctuation, which is normally questionable was atrocious.  But the post was dictated.  I don’t always remember to insert things like commas when I dictate.

The second is all the crying faces on Facebook in response to posts about my CRPS.  It does suck and it has taken over a large part of my life.  But I rarely blog about it just to whine about it.  I blog about it for the same reason I blog about serial killers, politics, and conspiracy theories.

I have a forum that’s open to whatever my mind thinks of….  And with nearly 5,000 followers between my blog, Facebook, and Twitter, I can pass along information via my blog to others.  And when one of those 5,000 people who reads my blog and meets someone new and that person says “I have CRPS” those readers will not have to ask “what the hell is that?”

And ultimately, that is my goal.  Or worse, if their daughter or granddaughter or neice breaks an arm and a year later, it still feels broken, that reader can say “Look, is this a possibility?  I follow a writer who has it and she went 23 years without an accurate diagnosis, because she had to wait for it to take hold in another area and the pain to be unbearable.”  There’s no test for CRPS.  Some people have visual changes to the skin around the area.  My hip, buttock and thigh on the right side are massively swollen all the time.  That hip gets a mottled red and white and it feels slightly colder to the touch than the rest of my body, even when I’ve been up and moving around.  Some people have the opposite, it feels warm to the touch. Some people lose their hair in that area.

When I mention it probably started in my right arm when I was 14, doctors touch that arm and inspect the hairs on it.  The hairs are normal as can be though.  It doesn’t change the fact that it always hurts a little and it always feels like it has a small electrical current passing through it.  I have a neuropathic twitch in my pinky on my right hand.  I also have it in my thumb.  Neuropathic twitches are common with CRPS.  Sometimes I know it’s coming, sometimes, I don’t.  And there’s one in my thigh and one that will make me kick out my right foot.

Usually, once a day, I can sit and watch a nerve near my groin twitch.  It makes my entire thigh “jump”.  Why the foot kick?  Because we are fairly certain the nerves in my groin aren’t the only ones afflicted in my hip.  It would appear my sciatic is as well on that side.  When that nerve twitches (the sciatic is the largest and longest in the legs), my foot uncontrollably kicks out.  And my toes point.  It doesn’t hurt, it’s just annoying as hell.  The twitch usually lasts less than 5 minutes.  Sometimes it will last 10-15, but that’s incredibly rare for me.

For years, I didn’t know the symptoms of RSD/CRPS.  So I didn’t know the neuropathic twitches in my fingers and at my wrist could be signs.  I also didn’t know that radiowave nerve ablation is one of the worst things that can be done for it.  So in September 2017, when we didn’t have a diagnosis, but knew the pain was nerve related, we did nerve ablation in my hip.  My hip hurt before it was done, no doubt about it.  But it wasn’t as bad as it was now.  I could take Tylenol 75% of the time and that would help the pain.

Only after nerve ablation, did the Tylenol stop helping.  That was when I had to have something stronger all the time.  I have talked to a dozen other people with CRPS who, like me, didn’t know they had CRPS and went ahead and tried nerve ablation only for the pain that was bad to get instantly and insanely worse.  By sharing my story and struggle, I hope to help others.

I hope that if someone new comes into your life and says “I have CRPS/RSD” my readers will know exactly what it is, keeping that person from having to explain their misery.  My other hope is to keep someone from going diagnosed for a long time, like I did.  And maybe stop them from doing something that is irrevocably worse for the condition, like I did.

Here’s the thing, it normally affects women, but about 20% of my support group members are male.  Also, I have mothers in the groups who are there because their 7 year old daughter has it, or like one, her 6 year old son has it.  Both of them got the disease after breaking a bone.  That’s the most common initiator of the disease.  But it isn’t the only one.  I have talked to people who got it after spraining a wrist or ankle.  I’ve talked to people who got it after tearing a nerve in a car accident.  The cause of this neurological disorder is unknown, why does one person get it, but not another?  Who is at risk?  From what I can tell, anyone… It doesn’t seem to have an age preference, or a ethnic preference.  A 40 year old German woman is just as likely to get it as a 10 year old African American girl.

Some research suggests there is a genetic component, but it is probably a multi-gene component.  Some one may be required to have multiple gene mutations at different points, which would explain why I have it, but no one else in my family does.

And it usually starts in a limb.  That’s a big thing.  It didn’t start in my hip.  It spread to my hip.  Why?  Possibly one of two reasons; I have had very, very mild arthritis in that hip since I was in my early teens.  I was born with both of them out of socket and my right leg is approximately 1/8th inch longer than my left.  It could have been triggered to spread to my hip from arthritis that is so mild not every radiologist even marks it on the list when I have an X-Ray of that hip done.  I also have a cartilage tear in that hip.  Nearly all cartilage tears heal on their own.  Most people don’t even know they have one.  I didn’t.  But it showed up on an arthogram.  A procedure that left me in brutal pain for 2 days afterwards.  My hip did not appreciate having dye injected into it.

And sometimes, it just spreads on it’s own and no cause for the spread can be found.  Since it’s on my right side and my right side seems more prone to CRPS (it started in my right hand and forearm when I was 14), neither of those things could be responsible for it moving to my hip.  It may just be one of those things.

It’s working, my goal of educating others about this.  Since I started blogging about my battle with CRPS in the fall of 2017, two of my readers have been diagnosed.  One had been misdiagnosed.  She broke her foot about ten years ago.  She messaged me one day to say that her foot never stops hurting.  Never.  And one foot is a shoe size bigger than the other.  Standing on it, is awful she told me.  Her doctor told her it was nerve damage from the break.  They weren’t doing anything for it though except Gabapentin.  She took what she had learned from my blog to her doctor.  And after a couple of visits where her pain was evaluated, they decided she had CRPS.  Another reader, took what she had learned from my blog to her doctor for her mother.  Her mother had fallen on some ice several years ago and was experiencing terrible pain in her shoulder after breaking her upper arm in the fall (from what I could gather, she broke the head of the bone off in the socket and had to have surgery to fix it).  Once they brought it up to the doctors and had a thorough evaluation, it was decided both of these women were indeed suffering from CRPS.  Interestingly, one of them messaged me after my gallbladder surgery and my discussion about how much better I’d felt after getting ketamine for the surgery.  She took that information to the doctor and got her mother approved for oral ketamine tablets.  The doctor told her it probably wouldn’t work, but they’d try it for 2 weeks and then evaluate the side effects v. pain relief.  She says her mom is doing fabulous on it, no side effects and the pain has decreased enough that she is able to garden again, one of her great pleasures.

That’s why I blog about it.  Admittedly, most blog posts are triggered by an event or comment or question or my need to vent my frustrations when I can’t do something because of it.  But it help others, not just me.  And that helps me too.  Yes, I have this awful thing, but if my blogging about said horrible thing can help someone else?  Then maybe it’s worth it?

 

 

Lord Byron & the Vinegar Diet

George Byron is an 18th century poet, politician, philosopher, and terrible role model for young ladies, who identify with Lord Byron because he did indeed write some very moody poetry.  Lord Byron was a bit of a kook.  Born in Britain he eventually moved (or was sent to India – I don’t remember, Byron didn’t leave much of an impression from my Brit Lit classes).  However, Byron comes to mind every time someone tells me to drink apple cider vinegar to cure what ails me.

I don’t, because Lord Byron proved a vinegar diet wasn’t good for you way back in the 1700s and 1800s.  This might need a touch of explanation, since Lord Byron wasn’t exactly sickly.  He was your average guy who wrote poetry as a member of the British nobility.  But he had a secret, he was very sensitive about his weight and terrified of becoming fat.

Lord Byron made the decision that vinegar would keep him slim.  And he began to drink it every day.  He believed it aided digestion so that you wouldn’t need to eat as much.  The logic is sort of there.  Lord Byron began having stomach problems shortly after starting his daily vinegar intake.

The symptoms sound like an ulcer, but could have been almost anything.  Vinegar is an acid after all.  Drinking vinegar can lead to esophageal issues, stomach problems, and it destroys the enamel on your teeth worse than citrus, carbonation, sugar, and starch from foods like potatoes (for the record, potatoes are worse for your teeth than sugar).

He also developed symptoms of malnutrition at one point, possibly because he wasn’t really eating he was so sick from the vinegar intake.   Although in his defense, it was keeping him slim, he suffered digestion problems and couldn’t eat very often or very much and reportedly he developed horrible diarrhea which is always fun.  Of course, just to make sure the vinegar was capable of working, Byron who was a vegetarian most of his adult life, sometimes went weeks subsisting on wine and crackers.  And, when he did indulge in food, he often purged it afterwards even before starting on the vinegar diet.

And while he died at the ripe old age of 36, it wasn’t from malnutrition, dehydration, or anything else that should accompany a vinegar diet.  He died from a fever contracted in India, I believe.  However, a doctor friend of his claimed his dieting habits had left him weak and susceptible to terrible illnesses.

Apple cider vinegar isn’t any better for you, it just has a slightly improved flavor over white vinegar.  Pickle juice which does contain vinegar can actually be quite good for you, commercial pickle juice is a mix of vinegar and a brine solution.  The brine solution uses salts that the body needs to help with all sorts of things (including potassium).  But one should still not sit down and drink a jar of pickle juice, unless you are also drinking lots of water, brushing your teeth religiously with an enamel protective toothpaste, and eating regularly.

Small amounts of vinegar are actually good for you.  It can aid with digestion as well as help clean up microbes in the mouth, and surprisingly, provide us with nutrients we don’t get from most of our foods.  But that’s the key, vinegar should be consumed in food products, not drank like a glass of water (pickled vegetables (beets, jalapenos, pickles, sauerkraut, etc).

For the record, dieting fads of the 1700 and 1800s are fascinating and strange and mimic modern dieting fads.

November

I was recently told November is CRPS Awareness month.  For the record, it’s failing, since almost no one has heard of it.  However, I’d like to share something about it.  In the last year, I’ve gotten some comments about there being no reason I shouldn’t be able to write more with my disease, after all, it does allow me to sit down, which is all you need right?

These people are not giant assholes like this question or statement implies, they are just uniformed.  In March of this year, I was still being treated by Dr. Wonderful who told me I needed to change how I thought about my CRPS.  He told me I needed to stop thinking of it like other pain conditions, because it isn’t.  Lupus, fibromyalgia, even diabetic neuropathy are similar to some degree, but they aren’t similar enough to use for comparison purposes.

All of these diseases get progressively worse and they all cause pain, so I was constantly thinking of CRPS like these diseases.  He told me that CRPS is not like lupus, because once you have lupus, you may have it forever, and it’s hard on the body, but it doesn’t spread and for most people lupus hurts less than CRPS.  How do you discern something hurts less?  Medically, it’s about physical symptoms.  Most people with lupus do not have to worry about their pain getting so high they might pass out.  I do.  I have had more nose bleeds in the last year than in the last two decades combined, because my blood pressure gets high and stays high, eventually causing a nose bleed.  These nose bleed episodes on their own don’t constitute a massive problem, but the cause does.  Every time my blood pressure gets that high and stays that high, it runs the risk of damaging my heart and my brain.  Why does it get so high, because my pain gets so high.  And something I’ve only learned in the last six months is that it is also wearing out my heart.  Since I was 15, my resting pulse rate has averaged 100 beats per minute.  Many thought it was my anxiety and dismissed it.  But my hands and arms have hurt since I was 15.  Now that my hip also hurts, it averages 120 beats per minute at a resting rate.  I can’t imagine what it would get to… well say the night I walked to Arrowhead and then climbed steep ass stairs to the get to seats because that was what my nephew wanted for his birthday.  I was in so much pain by the time I got to our seats, I thought I was going to puke and/or pass out.  I walk stairs every day, but they are normal stairs not the steep stairs that proliferate stadiums.  Regular stairs don’t bother me all that much.  But those stadium stairs were like being slugged by a sledge hammer on that hip.

Dr. Wonderful told me I need to think about CRPS as if it were cancer.  Because CRPS spreads, it moves to different areas of the body, causing extreme pain when it does.  For many years, I was able to mostly deal with the pain in my hands, especially during the winter.  It was bad, but not unbearable.  When this disease spread to my hip, it became unbearable.  And at 38, my body is getting older which means more issues with cartilage damage, tendon damage, nerve damage, so today it’s my hip and forearms and hands, but next year it could be my hip, forearms, hands, an ankle, and the shoulder I had to have surgically repaired.  Because as I age and these small damages accumulate, it’s going to spread the disease to those areas of the body.

Also, the pain isn’t an ache.  For me, it feels like the bones have been broken or shattered.  It’s sharp and intense.  I have days I wake up and wonder if it hasn’t already spread to some of these areas, as my entire body will have this feeling that my bones have been crushed.

I have a bulging disk, no big deal really, quite common especially in women who are heavy in the upstairs lady bits department and women who played sports…  Both of these apply to me.  But my new pain management doctor has asked me about it a couple of times.  He doesn’t want to fix it, he’s evaluating the type of pain and intensity, because even something as common place as a bulging disk, can spread CRPS to the spine.  And there are days I wonder if it’s already there.

Also, like cancer, there is no set treatments.  What works for Darlene or Sherry, two of my favorite support group ladies who also suffer this horrendous disease with me, are using different treatments.  Ketamine works for Sherry, I think it would work for me.  However, just because it works for Sherry and me, doesn’t mean it would work for Darlene.  Treatment is patient dependent.  There’s a list of things that can be tried, but each of them is a crap shoot.  Epidurals, steroid injections, nerve blocks, electroshock therapy (like from a TENS unit), physical therapy, none of these have helped me.

The Lyrica and muscle relaxers also don’t help a ton.  But I know people in my groups that are on the exact same medications and they work well for them.  Dr. Wonderful told me the day I needed to change how I think of it, that I was among the unlucky ones.  There is probably never going to be a treatment that works really well for me, consistently.  It does happen.  So I have to try to remind myself to be grateful that the opiates work.  And I know people who have been on them for decades now and do not suffer addiction or other side effects to them and they are effective for them, they’ve never had to change the type or increase the dosage amounts.  How?  Because opiates seem to work differently for people with CRPS.  I think it’s because it doesn’t make us pain free.  Nothing makes me pain free.  Even the ketamine simply reduced my pain, it didn’t take it away.  Nothing does that.  I’ve been given Dilaudid, morphine, and nubain for my pain when I’ve done stupid things or fallen because my hip didn’t get solid when I put weight on it.  Not even the nubain made me pain free.  For those that don’t know, Nubain is like Fentanyl, it’s considered an end of life drug used only for severe pain.

If nubain and ketamine don’t make me pain free, nothing will and that’s fine.  A simple reduction of pain is all I ask for and I get it, even with hydrocodone.  It helps a little for a short time.  It brings my pain low enough I don’t feel dizzy or like I’m going to pass out in order to stay focused enough to work.  And sometimes, sitting is not comfortable and neither is standing.

And no one with CRPS can hope to be pain free.  We can only hope for small reprieves given in whatever way we can get it.  And hope like hell we don’t wake up tomorrow with this horrible pain somewhere else.  So when you hear I support opiate use for chronic pain, this is why.  It may not be effective long term in people with lupus or fibromyalgia, or any number of other diseases, but it is for those with CRPS and for lots of us, it’s the only thing that works.  Last winter, I had to deal with the first suicide by someone in a support group of mine.  Since then, I’ve emotionally dealt with two others.

Alive, But Not Living

On the 24th, my hope of better living was dealt a huge blow.  I cannot get a prescription for oral Ketamine and my doctor doesn’t think the infusions will help the way I think and my insurance won’t pay for them, so no Ketamine infusions either.

And I am expected to be grateful for the 2 hydrocodone a day that I can take.  This puts me at the alive, but not living stage.  I’m supposed to remain active and have a fulfilling life, but I can’t get the tools to do so.  Because everyone has to be punished for the actions of a few.

And that is exactly what it feels like.  There are more homeless veteran’s in the US than there were opiate overdose deaths in 2015.  Why don’t we have a homeless Vet crisis that the news covers every freaking night?

In 2015, there were more deaths from influenza than opiate overdoses and those overdoses include prescription opiates and heroin.  Why don’t we have an influenza crisis?

We’ve all heard about the Opiate Crisis from somewhere and the tragedy of addiction and deaths and complications from opiates.  Let’s look at some realistic things:

Addiction is a disease and people don’t need opiates to become an addict.  My father, god bless him, is an alcoholic sober 33 years.  But he fucking got addicted to aspirin for several years while I was a teen.    And he isn’t the only one.  In 33 years, you meet a lot of people in the program and I have seen them addicted to a specific brand of water and I know it was an addiction because one of them once drove 100 miles to get a case of that particular brand.  Of WATER.  Addiction isn’t like Lupus, it’s like depression, it’s a mental disease more than a physical one.

And my best friend is proof that addiction is a disease.  She is incapable of it.  She can smoke, not smoke, drink soda, not drink soda, drink alcohol, not drink alcohol… all the things people complain causes addiction, she doesn’t get addicted to.  And there are different strengths of addictions.  After 19 1/2 years I was able to stop taking my Clonazepam cold turkey.  No withdraw, no side effects.  Nothing.  Just stopped.  No problem.  But I have a harder time quitting smoking, partly because I like to smoke, I like the taste and I like the smell of a lit cigarette.  Weird I know.  But I’m not as keen on the side effects of clonazepam or opiates.

I can’t go to the grocery store without wondering whether I’ll have enough medication to get me through the month.  The closest to understanding the pain of someone with CRPS that most will get is to stab yourself, leave the knife in, and try to go about your daily routine.  I was serious when I said my surgical incisions on day 2 after having my gallbladder removed was lower than my daily pain level.  But I was allowed to take 10mgs of Hydrocodone every 6 hours for that pain.  And I’m only allowed 2 a day for my hip, even though it hurts more.  Why?  Because CRPS and opiates hasn’t been studied.  And because I must suffer since 37,000 people overdosed on opiates in 2015.

Does that make sense?

Let’s apply this logic to the rest of life.  What if you weren’t allowed to buy Tide anymore because of the Tide Pod Challenge?  Would you as a Tide user feel this was fair?  Or rational?

Did you know the CDC does recommend using opiates for chronic pain?  Probably not.  But they do.  Even long term.  Even for those diseases they say they don’t work on long term like Lupus and arthritis.  The CDC says that taking them under the supervision of a physician is preferable to the increased expense and decreased quality of life of not using them.  You know who decided we shouldn’t use them?  Not doctors.  Not watch dogs of health like the National Institute of Health, not the Centers for Disease Control, politicians.

And to that end, they have repeatedly ignored recommendations of the CDC and NIH and made it harder for patients like me to get a prescription for anything that might help me and made sure the DEA (Drug Enforcement Agency) had the ability to shut down doctors they felt were misusing their prescription pads in the treatment of their patients.

That’s why I can’t get a prescription for 3 hydrocodone a day anymore.  If my doctor prescribes that, he can serve prison time… as well as lose his license.

Do you know why?  Because parents of teens that overdose or misuse prescriptions (usually stolen prescriptions) for opiates are sympathetic.  They look great on TV.  I feel bad for the woman in Pennsylvania who lost both sons to illicit opiate use at a graduation party in 2015.  I really do.  They mixed hydrocodone that had been stolen by another kid from an elderly grandparent with alcohol and both boys died.  It really is sad and tragic.

But I and my fellow chronic pain sufferers are being punished for it.  I don’t even live in the same state as the family this happened to.  Not even close.  But my doctor can go to prison for helping me attain some sort of quality of life because of tragic incidents like this.

I try to be very responsible with my medications.  When I leave the house, they leave with me.  When I have company over, even when it’s my niece and great nephew, the bottle goes into my pocket and stays until they leave.  Not because I have concerns about her stealing them or even any of my friends, but because that’s not a risk I feel I should take.

Yet no matter what I do to safe guard my opiate prescription, I am still being punished and held responsible for the actions of others that didn’t even involve my opiate prescription.

At this point, death is my best choice for treatment.  None of the alternative forms have helped; not nerve blocks, not steroid injections, not dietary changes (which are impossible since I’m allergic to most meat), and not the spinal stimulator  because I’m allergic to metal… And treatment isn’t one size fits all anyway.  I’ve talked to people ketamine hasn’t helped and talked to some it has helped greatly.  And I’ve talked to those who get epidurals monthly and those work great, but mine didn’t. But the two medications I have found that do help, I can’t get because we have a drug problem in this country and somehow I’m responsible.

But I am not supposed to get depressed or angry over my lack of ability to live my life.   I’m supposed to be grateful that I get 2 hydrocodone a day and smile and pretend I don’t want to die in my sleep when I go to bed at night.   I talked to 3 others recently who also have CRPS and feel the exact same way.  Sheri is getting Ketamine and while it helps a ton, it doesn’t cure it, god forbid she go grocery shopping, but since she is getting Ketamine she doesn’t feel like she can ask for anything to take on those days that she has to do stuff (like live) and the Ketamine isn’t enough.  Or Darlene who has a stimulator and has been taken off her opiate prescription, because you know Opiates are bad and we are in the middle of a crisis, but again, the stimulator keeps her from killing herself when she sits down and does nothing, but doesn’t keep up with her pain if she has to do something like go grocery shopping or god forbid have some kind of life.  I’d suggest the 3 of us meet up and commiserate, but not a single one of us is in a position to travel to get to a convenient meeting place and once there, we’d be in too much pain to do anything more than put our heads down and sob uncontrollably, which we can do in the comfort of our own house while Skyping.

Exploding Head Syndrome – Generalized Panic/Anxiety disorder

When I talk about my anxiety disorder, I leave a lot of stuff out.  And I recently realized I was doing a disservice to all the mentally ill people that I love and support and all the people who aren’t mentally ill who love someone who is.  I have generalized panic/anxiety disorder.  This means I’m often irrationally anxious over things.  I’ve been dealing with it for 23 years now.  Sometimes it gets a little better, sometimes it is crippling, literally.

Things that make me anxious for no reason – a ringing telephone.  My phone lives on vibrate simply because I can’t handle it going off all the time with news alerts, phone calls, text messages, SnapChats, weather alerts, etc.  It annoys J that I won’t turn my ringer on, ever, but that’s because he doesn’t understand.  And I get it.  There are mental illnesses that even as someone who is mentally ill, I don’t understand.

Other things that make me anxious: the sound of the wind, falling asleep, knowing I’m going to dream when I sleep, large groups of people, doing something new, going somewhere new for the first time, meeting someone knew for the first time, publishing a book, talking to my pain management doctor about changing some of my meds, beyond the Ketamine change.  Life, life makes me anxious.  And any of these things can cause me to have a panic attack.  But there are a few on this list that are not normally found in generalized panic/anxiety disorder.

When I was 18, I went through a period of time when I slept in hour or two hour chunks of time due to my anxiety.  I’m a lucid dreamer and it’s hard to tell my dreams from reality, even after I have woken up, and I have Exploding Head Syndrome with auditory hallucinations when I am very stressed out.  I know a bunch of people just said “what the fuck is Exploding Head Syndrome?”  When I am very anxious, I hear what sounds like explosions in my head, usually when I’m trying to fall asleep.  Sometimes the explosions are quiet enough they sound like gunshots, sometimes they sound like cannons, sometimes they sound like the neighbors house has exploded.  The sound is loud enough, I will jump, and it will startle me into being fully awake if I was on the verge of falling asleep.  Thankfully, my Exploding Head Syndrome symptoms are usually confined to when I am falling asleep.  To accompany this, when I’m very stressed, usually as I fall asleep, I hear a man with a very deep voice call my name.  Deeper than James Earl Jones even.  And while I “hear” it, I also imagine I “feel” it, as if it were on the same frequency as a roar from a big cat.

Oh and I have nightmares, a lot of nightmares.  And before you start telling me to lower my caffeine intake and stop watching/reading so much horror.  I’ve done those things in the past without any change in symptoms.

I’m afraid of sleep, no, not just afraid, phobic of it.  I have a phobia of dreaming.  Since being taken off my Clonazepam in February, I have started drugging myself with Benadryl or Tylenol PM at night.  Because both of these cut down on the number of dreams I remember from the night, and they help me not wake up because of a nightmare.  Which is what my clonazepam did for me.  On it, I might remember three or four dreams a week.  I remember more than that on the OTC drugs, but any decrease is good.  And when I do have several nights of dreaming that I remember, my body causes panic attacks when I enter that almost asleep stage to wake me up.

Sleep phobia, Exploding Head Syndrome, auditory hallucinations, and the panic attacks when I am nearly asleep, these things are not common with Generalized Panic/Anxiety Disorder.  These symptoms are more consistent with Post Traumatic Stress Syndrome than generalized anxiety/panic disorder.  My psychiatrist in the 1990s told me this as we embarked on the quest to find medication that worked for me.  3 months and 11 medications later, all of which made me crazier than I already was, and we settled on Clonazepam.  Clonazepam (Klonopin) is actually really good at treating PTSS as well as generalized anxiety/panic disorder.  Considering I don’t handle medications that mess with my brain very well, it was a good choice and fit for me. And I used it as prescribed for 19 1/2 years.

In February 2018, I was given a choice, treat my pain or treat my anxiety.  Clonazepam can cause you to metabolize hydrocodone exceptionally fast, which is why I was only getting a half hour to an hour and a half of relief from the medication.  And here’s the really fucked up part, the Brand name Vicodin was more effective than the generic Hydrocodone.  Brand name Norco is not as effective as Brand name Vicodin when I was taking Clonazepam.

Now, I still think I metabolize hydrocodone too fast and I still need to get the test to prove it.  But symptoms of Exploding Head Syndrome have returned.  As have my panic attacks.  I’m not sure I want to go back through the trial phase of medications to see if they help.  At one point I nearly had a psychotic break in the first set of trial and error anxiety treatments.

Where I failed to help my fellow sufferers of anxiety: I have never mentioned that my generalized anxiety/panic disorder has elements consistent with PTSS (formerly PTSD).  I’ve never mentioned Exploding Head Syndrome, which is rare, but more likely to happen in people with severe depression and severe anxiety.  And I’ve never mentioned the auditory hallucinations which again are rare, but can affect anyone with severe depression or anxiety.

For the record, my first psychiatrist was amazing.  He and I discussed whether to list my anxiety as generalized anxiety/panic disorder on my medical charts or whether to list it as Post Traumatic Stress Syndrome.  In the 1990s, it was rare for anyone but a combat veteran to be labeled with PTSD and for the sake of not being treated like I was a fruit loop for the rest of my life, we went with Generalized Panic/Anxiety Disorder.

But I am a fruit loop.  And my anxiety is not generalized.  I no longer mind people thinking I’m crazy.  I am.  I often consider walking into mental health facilities and asking them to hold me for 72 hours and please oh please make the dreams stop, make me stop worrying that if I leave my house, it’s going to burn to the ground or get hit by a meteorite, or that I’m going to be burgled.  Or any one of a million scenarios in which seriously bad shit happens.  J tells me not to think about them.  Which is all well and good for him, but I can’t stop my brain from thinking about them.  I can’t just magically turn it off.  If I could, I would sleep better.

I also know that at least a dozen of you thought “why would she have PTSD?”  My psychiatrist and I went through my memories looking for a cause and found several possible triggers for PTSD.  We’ll start with my first memory, ever.  But before we do, I want everyone to realize I love my parents very much, they aren’t perfect people and at the time of my first memory, my father was a heavy alcoholic who drank nearly his entire paycheck every week.

My first memory ever, I was maybe 3, maybe 4.  My father was not abusive towards me or my sister.  And he was an emotional, crying drunk (sorry dad).  It was evening and my father wanted to go out drinking.  It had been a bad day for him, he’d been required to be a father and take care of me and my sister.  I had a fascination with taking things apart.  I got hold of a case knife (a butter knife) and managed to take the oven door off, because my father was drinking in the living room, not paying as much attention to me as he probably should have been… for the record, in the 1980s, when a father took charge of the children for a while, he was said to be babysitting.  My dad was not a good babysitter.  And my father could not get the oven door back together or on, oh and I didn’t just remove it from the stove, I dissembled it once it was off.  He had to wait for my mom.  An argument ensued.  My parents fought, but for some reason that night, the fight was different.  Maybe I expected my already drunk father and my totally sober mother to beat the crap out of me (for the record neither of my parents ever beat the crap out of me) and despite the problems, I grew up in a house where I knew I was loved.  Anyway, during the fight, I crawled behind the couch and hid.  My mom wasn’t mad at me, she was mad at my dad, because everyone was aware I did this kind of shit, I had dissembled a half dozen tricycles and my sister’s brand new 10-speed by this time along with other stuff.  My psychiatrist told me that since that was my first real memory with detail from my childhood (there were others much later), it may have left an emotional scar.  My mother did eventually get the oven door put back together and on the stove.  But I refused to come out from my hiding spot and actually fell asleep back there for a while.

Moving forward, I was 7 when I was sexually abused by my 16 year old step sister.  I point out her age, because she was definitely old enough to know what she was doing was wrong.  As an adult, I can say that I believe she was probably molested or sexually abused as a child if she was an abuser at 16.  I don’t have a lot of memories of the abuse.  I actually don’t remember being 7 hardly at all.  I don’t even remember what teacher I had in school.  It’s not uncommon for people who have been sexually assaulted or abused to have gaps in their memory.  And while I had never fully forgotten that I was sexually abused by my step sister, it took my psychiatrist realizing that I had a huge memory gap before I would talk to him about it.  The sexual abuse is another possible source of my anxiety disorder.

Move forward another year and I knew of a kid my age that had been murdered.  Thankfully I didn’t have the details at the time, I just knew that my father who had been in AA for a while by then, told my step mother about it, she was the daughter of a friend of his in the program.  The little girl had been abducted right out of her front yard.  And I learned that her abductor had sexually assaulted her before killing her.  It was hard for me not to connect her to my own experience with my step sister who had once told me if I didn’t do what she said, she’d have her friend kidnap me, assault me, and kill me.

So there’s another possible trigger.  I didn’t tell either of my parents about the abuse.  I was scared.  I was ashamed.  I felt guilty.  And I felt it must have been my fault.  I refused to go to my father’s anymore after that.  I would have a full on meltdown when they would try to make me.  The only thing I ever told my parents was that my step sister was mean to me.  And after learning my step sister was being mean to me, which my mother assumed was kicking, biting, hitting, because I did occasionally have bruises I couldn’t explain, she stopped making me go.

I was 11 when I accidentally overhead my dad on the phone with the grandparent of the murdered girl.  He was his sponsor in AA.  She had been raped, beaten, and then hung from a tree with barbed wire and that hanging was what killed her.  Mark that down as a possible trigger.

Oh and my real sister who is also mentally ill, had let her friends torment me when I was very little, one of them sat on me and forced me to watch a Nightmare on Elm Street, I was younger than 5, because when I was 5 we moved to an apartment and my sister moved in with the family of a friend of hers.  Another possible trigger for PTSD.

Or it could have been all of it together that triggered PTSD.  This post has gotten very long.  However, all of this information must be included if one is to understand why I am mentally ill and how I have not been faithful to the concept of helping change the perception of people with mental illness.

And while my mental illness was triggered by external factors, my psychiatrist told me that I probably had been destined to have generalized panic/anxiety disorder, even if these things hadn’t happened, because worrying about things like meteorites hitting your house if you leave, belongs more in the generalized anxiety/panic disorder than PTSD.  Even if my life had been absolutely perfect with no emotional traumas beyond the norms of childhood, I would still need to be medicated for an anxiety disorder.

I referred earlier to my anxiety being crippling at times.  What does that mean, how can anxiety cripple someone?  There are times when it hurts to breathe I am so stressed out.  And it gets much worse if I am supposed to mail something.  I don’t know why the mail triggers me to be anxious, but it does.  My editor is waiting on me to send her some Scentsy Car Bars.  Every time I try to put them in an envelop to mail out to her, I feel like all the oxygen is being sucked out of the room.  I even see spots before my eyes and feel faint.  It’s stupid and I know it’s stupid.  It’s just mailing something, but even though I know it’s ridiculous, I can’t stop my brain from working itself into near hysterics over it.  I have a postal scale and still worry I’ll get the amount needed to mail said envelope wrong.  I worry my terrible handwriting will result in it getting delivered to the wrong place.  I worry the bars will break in transit.  I worry I’ll put them in the wrong type/size envelope and they’ll break a machine at the post office.  I worry the package will tear open and she’ll end up getting an empty envelop because the stuff fell out after it was torn.

All of this nonsense filters into my brain every second, of every day, and mediation only helps a little, because I am phobic that if I manage to stop thinking, I won’t be able to start again.  This has gotten much worse since I started on Lyrica.  And I’m afraid of being bored, because if I’m not putting information into my brain, then I am left alone to think about things like meteorites hitting my house.

And a side effect of the PTSD is that I can be very distant.  And sometimes, I struggle with feeling emotionally dead.  Surprisingly, writing helps.  It’s why I write.  I don’t fill my characters with my mental struggles, I am trying to escape those problems.  For a short time, I can be those characters instead of being me.  And even “being” the emotionally stunted Aislinn Cain is usually better than being me.

If you want more information on Exploding Head Syndrome, I’ve linked to WebMd for it because I couldn’t find it on the Mayo Clinic site.  Because much like CRPS, you’ve probably never heard of it.