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?

 

 

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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.

 

Personal Responsibility

I’ve been researching the hell out of Ketamine the last month trying, increasing my knowledge to show my doctor that I really have thought about it a lot and I’m not just trying to rush into getting a Ketamine prescription all willy-nilly.  As well as reading case studies, I asked in my support groups for any personal experiences they’ve had with Ketamine and their CRPS.

Most of the responses were along the lines of “we keep it in the backs of our minds as a maybe in case all else fails”.  I’m pretty close to the “all else failed” part.  The hydrocodone helps, but trying to keep to just 2 pills a day sometimes is maddeningly awful because sometimes my pain is far greater than what 2 hydrocodone can handle.

But this one woman floored me.  She wrote “my best friend overdosed on Ketamine one night after getting drunk, so I am trying to convince my state’s government to increase restrictions on prescriptions of it.  Um, what the fuck?!

It’s a tragic story.  And ketamine does run the risk of death and coma, especially if mixed with alcohol, as does almost every other medication available.  However, you want to take away a medication from the X millions of people in your state because your friend made the decision to ignore the “DO NOT MIX WITH ALCOHOL” warnings?  That doesn’t even make sense.

Ketamine can be used as a last resort medication for some types of depression, as well as lowering pain levels in some people with chronic pain.  Why would you even think this was okay?  What happened to forcing people to take responsibility for their own actions and decisions.

If I weigh the risks of ketamine use against the effects of my disease and then my doctor and I decide that Ketamine is an option for me, it seems like I should be allowed to use it regardless of what Joe Blow did that resulted in his death.

If I take it and it kills me, that’s just the way it goes, I knew the risk was there.  It will be sad for my friends and family and readers, but none of them should raise a banner to get Ketamine banned just because my body decided to react badly to it.  Or because I made the choice to ignore warning labels and probably a discussion with my pharmacist where I had to sign at the end to say that I had received verbal counseling on the risks and understood them.

Ultimately, I am responsible for making those choices, regardless of the outcome.

 

All Talk

My pain management doctor has told me at every appointment, we need to be aggressive with our treatment of my CRPS even if I am beyond the 1 year remission window.  We have done a lot of things that haven’t worked, but we keep trying, hoping something will eventually stick.

Monday I noticed sadly that the Ketamine was wearing off.  I called and got the exact dose I’d been given 10mgs of IV Ketamine.  Cool.  I went online and started researching Ketamine and found that most of Ketamine’s side effects can be treated with benzodiazapenes, including the psychotropic ones like hallucinations and insomnia (I only experienced insomnia).  The most common one used to treat ketamine side effects is Klonopin, a drug I was on from November 1998 to February 2018.  I tolerate it well.  So maybe it will be enough to combat the side effects of the ketamine tablets if I have insomnia on it.

Now, we’d have to move me off Vicodin and onto to Percocet since Klonopin basically negates the effects of Vicodin to deal with my very active days, but that’s okay, because I could see my need for pain meds greatly decreased with the assistance of Ketamine and my quality of life improve as my pain decreases and I can return to doing some of the things I love to do.

Anyway, after much research, I called my pain management clinic to let them know that at my next appointment, I want to discuss adding Ketamine to my pain regimen.  I was told I could discuss it with the doctor, but not to get my hopes up because Ketamine is not a medication he uses.

Well, what the fuck?!  How does one not get their hopes up?  I had two weeks of the lowest pain levels I have had in over a year.  Ketamine worked better than opiates, nerve blocks, steroid injections, and even better than an epidural.  Yes it’s a sedative and yes it can have some serious side effects – hallucinations, insomnia, dream like feeling, nerve twitches, and loss of appetite.  But my disease also has some serious side effects.

So I am gearing up for that conversation later this month.  It’s one of those things where I know it’s not the best solution for everyone with CRPS, but I think it might be the best solution for me.

 

One final thought on my surgery

I had fajitas Thursday night, they were amazing. I mean really amazing, even though they kind of screwed them up.

However, I am back to eating pretty much anything I want. No veggies bother me, not even spicy ones.

I have felt bloated a few times after meals but was told this was probably a response to my body getting meals again every day and it would probably be a week or so before it adjusted to eating at least twice a day again, I often skip breakfast.

They put four holes in me. The bottom two were for the camera and blowing are into my abdominal cavity. I see the surgeon Tuesday to discuss my surgery.

I had a realization during my recovery week that I need to share with everyone. Late Thursday night, after the leftovers had been put in the fridge, and I was lying in bed trying to convince my brain to freaking shut down for the night, my brain latched onto a thought and refused to let go.

I often talk about my pain levels, but it is exceptionally hard to understand someone else’s pain if you have never experienced it. It doesn’t matter how empathetic you are as a person.

However, at no time last week, not even when I first woke up in recovery from the surgery did the pain from my surgical incisions hurt as much as the pain in my hip when I have done nothing to aggravate it.

In other words, my disease causes me more pain than laparoscopic surgery. And I have another 30 years or so of this, maybe. Waking up day after day and knowing that the pain in my hip is worse then the pain of laparoscopic gallbladder removal surgery.

Well that’s fucking depressing.

I don’t even know what to do with that information. And worse, when you tell someone that they think you are exaggerating or lying or misremembering.

But… here’s one of the things that made me start thinking about it. I take a Vicodin for the surgical pain and for a few hours, there is no surgical pain. That doesn’t happen with my hip pain. Not even this week. And I have not once regretted waking up because of the pain of the incisions. Most days, I have only taken 1 Vicodin to deal with the pain of the 4 incisions. That is less Vicodin than I take to deal with my hip pain even on days I don’t overdo it.

I have spent a year trying to explain in words the entire world would understand the insane amount of pain CRPS causes and I have always failed. But there it is. I would rather have surgery than deal with the pain in my hip because a laparoscopic surgery is less painful.

This is why CRPS has such a high suicide rate. It isn’t because they are weak it’s because you can only spend so many years dealing with pain levels higher than those you have in surgical recovery after a laparoscopic surgery. And you know that it really doesn’t get better.

You try to stay positive, but it can be next to impossible, for even those whose “glass is half full.” I am still working on my book about it. Maybe next year I’ll get it published if not this year.

Ketamine is not my friend

Ketamine during surgery Monday was necessary and I hope to never need it again. It is not my friend.

I awoke sick from surgery. They gave me two doses of nausea medicine before I left the hospital and when I described my symptoms the nurse said “oh yeah, that’s the ketamine.” Well dandy.

At 2:30 am the morning after my surgery, I found myself wide awake with the urge to do something. I thought at first it was my pain levels, but once I got the urge to get up and do something, I realized that wasn’t pain talking.

And so I found myself prepping vegetables and meat for a soup I was going to make on Tuesday. And writing a blog post. And then surfing the net looking for info on the definition of a cult (cool blog post coming at a later date on that).

And then I searched for Ketamine side effects because I have experience with everything they gave me at the hospital except the Ketamine and it can cause insomnia and manic episodes… hence the meal prep at 2:30 in the morning.

Somewhere between 4:30 and 5:30 am, I fell asleep. I awoke feeling refreshed. No clock in the room and my phone was in the kitchen. I got up and walked into the kitchen and found a clock that told me it was 7:30 am. Good grief. That’s a lot less sleep than I normally get.

I had expected to sleep until late afternoon, but nope. I was wide awake after just 2 1/2 hours of sleep.

But oh man, my incisions hurt, but my hip doesn’t. I had talked to a few of my fellow CRPS sufferers and some of them said a single dose of ketamine can bring their pain down for a few months at a time, no week long clinic infusions necessary. It will take more than a single day to know for sure, but I have my fingers crossed that maybe the same is true for me. That would be awesome.

So why not try Ketamine before now? Because no one knows why ketamine helps with CRPS pain, mostly because we don’t understand CRPS, not really.

Meaning while Ketamine side effects might suck, they go away and if it will bring my pain down for even a week, I’m willing to deal with the side effects and we might have another pain management option, which would be amazing.

The Best Laid Plans

My surgeon set my surgery 13 days out so that she could get everything set up to go smoothly.  I had multiple calls from her staff who were coordinating with my pain management doctor.  And the stars were aligned…

And then a comet broke up the alignment and yesterday definitely did not go as planned.  I am blogging because I am in agony and can’t get comfortable enough to sleep.  Almost all positions hurt my body except one, and that one allows me to type on my computer, so I am.

The anesthesiologist walked in and told me my requests were going to be ignored.  I would be getting a normal surgical routine of propofol and nothing else.  A few minutes later, my surgeon enters and tells them to hold off on the IV.   She sits down and tells me the anesthesiologist she had set up to do my surgery had taken the day off due to a family emergency.  She had spoken to the anesthesiologist on duty and he didn’t believe in Complex Regional Pain Syndrome, so he wasn’t going to do anything special to prevent it and I had a couple of options…

She had been studying up and a therapeutic dose of Ketamine via IV was enough to prevent the spread of CRPS during surgery.  We could do the therapeutic dose of 6mgs via IV injection or we could reschedule.  And no nerve block because Anesthesiologist All Mighty was refusing.  Wow.  Well.  What now?  She did tell me if the CRPS spread as a result of my agreeing to the surgery, she would back me in a malpractice suit against the anesthesiologist at a later date since both her and I had informed him that I had CRPS and she had even brought literature to the surgery that said a Ketamine drip was the recommended way to proceed with surgery on a patient with CRPS.  As were nerve blocks.

I went ahead with the surgery simply because this month has been torture when it comes to my daily pain levels and my pain management doctor thinks this could be because of the gallbladder dysfunction.  And I was already pretty sure the nerve block wasn’t going to work anyway.  And she was willing to do the therapeutic Ketamine dose that has proven to be helpful in preventing the spread of CRPS.  She gave a touch more, since most therapeutic doses are 2-4mgs.

I awoke in agony.  My own moans and groans of pain penetrated by brain before it wrapped itself around the fact that I was in a ton of pain.  The nurse rushes over and asks me if I would prefer Fentanyl or Dilaudid.  Well that’s easy, I can’t take Fentanyl… I hate dilaudid too, but I don’t have the side effects to dilaudid as I do to Fentanyl.  I manage to tell her dilaudid and she asks if I am sure?  Yep.  I hold up an allergy bracelet to her, in it are the words Fentanyl and ALL METALS – the metals really was in all capitals.

I also feel sick.  Really sick.  She tells me that most people who receive therapeutic Ketamine wake up sick.  She pushes a does of nausea medication.  Then we have to do another dose of dilaudid, because my blood pressure is still rising after the first dose.

Then she tells me a secret that I didn’t know before, people with CRPS usually have trouble getting their surgical pain under control because our central nervous system is already overloaded from the disease, adding to it, doesn’t help.

As I prepare to leave, the nurses, two of them, remind me that I must stay on top of my pain, regardless of the fact that I feel sick and the dilaudid is already starting to give me a headache.  What happens if I don’t stay on top of my pain?  This…. Blogging at 1 am because I hurt too badly to fall asleep.

Here’s where I screwed up.  The Ketamine/Dilaudid mix made me heave my guts up when I got home from surgery.  I did make it home thankfully before it happened, but after tossing my cookies, I might as well have not received the dilaudid.  At that point, I should have started taking the pain pills they sent me home with.  Instead, I decided to go to bed and sleep some of the side effects off.  I took a partial dose and slept until 4ish pm.  After that, I got up ate a sandwich and took a full dose of medication.

Oh H!  Why?!  I’m in quite a bit of pain, completely my fault of course.   Why would you do something so stupid?!  …I have this terrible fear that I am going to accidentally kill myself with medications.  I have a lot of medication sensitivities and I don’t actually have much narcotic tolerance.  Adding hydrocodone or oxycodone to lots of Dilaudid worries me.  So I tried not to take them.  Eventually I had to give in and take the full recommended dose, but it worried me.

Which contributed to my inability to sleep.  And my writing of this blog post.

Despite the plan going awry, I feel my surgeon had my best interests at heart and wouldn’t have agreed to do it at all if she hadn’t found a way to limit the possibility of spreading the CRPS.  I think if she had not found research that a therapeutic dose works, she would have walked in and said “I am so sorry, we are going to have to reschedule your surgery because Dr. Asshole All Mighty refuses to listen to reason and I can’t take any precautions against this disease spreading as a result, so we need to do it when I can offer protections to you.”  

The surgeon was a general surgeon, meaning she does a variety of them.  If I ever have to have surgery again, I’m going to try setting it up with her.  She put me at ease, even when the plan went all to Hell.  More impressively, she was willing to let me walk out yesterday morning and reset up the surgery with her.  I don’t feel most surgeons would have offered that.

Recovery time wasn’t really given to me.  I was told it would be slow and it could take a week just to recover from the surgical incisions.  And my pain management doctor said he would be surprised if I was fully healed in 3 weeks.  I meet with the surgeon in a week to discuss the surgery and after effects and my daily pain levels at the sites.  I have four holes, three of them seem to be in weird spots.  I knew they were going in through my belly button with the camera, and they did, but there is a hole about four inches from my belly button on the right side, as well as two nearer to my gallbladder, and one that is slightly left of my stomach.

But since I didn’t get to talk to the surgeon afterwards and for some reason my mom is no longer listed as someone that can talk about my medical procedures (need to redo paperwork).  I don’t actually know what they found during surgery yet.  I suspect in the month leading up to surgery, I did develop a gall stone, but I don’t have confirmation of that…  I am looking forward to my meeting with her in a week.

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