Tag Archives: autoimmune arthritis

One Year Opiate Free

Went from 13 prescriptions to 3 and cannabis – in the span of a year! Sensi Star

Getting to this point was not an easy journey.  When I started, I was hoping to replace opiates because the DEA was causing shortages of the only opiate I was not allergic too.  My RA damage is severe, and the activity was still in the severe category at the time.  In the back of my head, I truly thought this cannabis experiment would fail.  Decades of raging autoimmune disease is rarely forgiving!  Persistence and being a stubborn horses arse paid off, because  a year ago I woke up knowing I didn’t have to take another opiate, and was not going to have any more withdrawal symptoms!  What a glorious moment!  If this journey ended there it still would have been a success, however – it ended up being SO MUCH MORE. 

Right now, I am off 7 daily prescriptions and 2 that were as needed.  So cannabis replaced 9 prescriptions total!  As a result, I lost almost 70 pounds!  Let me emphasize – I lost over 70 pounds of prescription side effect weight.  That led to being able to lower my infusion, which was a good thing considering how it is effecting my cholesterol and neutrophils!  I did consequently add in Lipitor for the cholesterol that Actemra is steadily rising, but hoping that lowering the dose will also improve the results!  (I was 95% vegetarian in between results, and my cholesterol has always been in the 120-150 range prior.  Side effects of biologics!)    All this sounds great, but how am I functioning?

Last January-May, I was in such complete flare and misery that I withdrew from most of the world.  This site was the only social media that I had the energy for, and people were actually worried about me.  My disease was still in the severe activity level range, and functioning was SOOOOOOOO HARRRRRRD.  I spent most of my days binge watching History Channel or YouTubing from my bed.  Hiking was an automatic NO and I was about 80 pounds overweight from medication.  January through May in Colorado is absolutely insane weather wise.  We get snow storms, hail storms, and things are rapidly changing with the air pressure.  There are also these storms that come in from the south that the mountains can’t buffer, so they hit hard.  This past week we had rain, massive hail/electrical storms, tornadoes, snow storms, and flooding (actually I think this was ONE DAY LOL).  So turbulent stuff for these months!  This is my “autoimmune season”.  This year I have actually been outside, maintaining my friendships better (energy for social media), keeping up with my Granddaughter who moved out in November, and have actually been able to function better.  This season, I have had several autoimmune days and suffered from germ warfare – but I am OKAY.  Am I running and jumping and climbing mountains?  Absolutely NOT.  My hands are hurting just from typing this, my knee is still deciding whether it wants to hold my weight today, and my feet are just being assholes.   Because I have increased my activity level, I am starting to see some extra hand pains and my feet are mad as hell – BUT I AM USING MY HANDS AND FEET!  That is an amazing thing!

I have a garden attempt going, have been out hobbling with friends, typing a LOT more than I would ever type before, and am enjoying this new recession in disease activity!  Winter/Spring transition is tough, but nothing like Hurricane Season, Tornado Season, The Yellowing, and Satan’s Armpit Season.  So over all, this has been a success.

While I am still living with RA, lupus, Sjogrens, and Reynaud’s, I am living.  My disease activity has significantly decreased, and my labs have been almost normal for the last 4 runs (watching cholesterol and neutrophils which were high and low respectively.)   I actually feel good enough to deal with some of these other symptoms/issues that were lingering in the background like neuropathy (improving s-l-o-w-l-y) and some deformation issues.  No, I am not cured.  I still have to plan everything I do, and half of what I plan never gets done because of pain or fatigue.  After each PT session, I usually have to rest several days to heal my joints good enough for the next session.  Cooking dinner and showering kick my butt as far as activity level goes, so I am still way behind what anyone would consider average activity.  But I am getting there.

Everything we do is temporary.  At some point, I know I will lose every ability I have.  Even this increased but underwhelming activity level is a blessing and an opportunity for me to collect an experience, pain or not.   I truly love life and can say hands down that cannabis is extending my activity level and allowing me to live.  My quality of life isn’t “normal” (that word needs to be stricken from every autoimmuner’s vocabulary) but it is good.  Happy Cannaversary to me!

10 Things I Hate About Autoimmune Arthritis

There are a LOT of lists out there about autoimmune  arthritis, and here is mine.  These are 10 things I HATE about these diseases.

1. Random injured body parts.   Do you have a wrist brace on one day, and an ankle brace on the next?  You may have autoimmune arthritis!  It tends to travel from area to area, just in case we weren’t paying attention!  This lovely little trait lends itself to our lack of credibility when we feel bad, because after all – once a body part hurts, doesn’t it always?  Holy cow, I hate this more than anything.  I have had body parts hurt for years then randomly stop hurting.  Sometimes it is not that consistent though.  This morning my ankle hurt, but now it is my neck.

2.  No 2 doctors say the same thing.  Oh the state our care is in!!!!!!!!  (Yes that was a lament!)  Maybe part of the reason we cannot get good awareness out, is because the medical profession that treats us is insanely inconsistent!  No two doctors have the same beliefs about autoimmune arthritis.  Some doctors don’t even recognize organ involvement with RA or Sjogrens, or that people can and do DIE from these illnesses.  This leads to so many roadblocks for patients, and ultimately contributes to an early death.

3.  Everyone also has “achy knees”.  (While mine do ache now, it isn’t my RA.)  Yes you can have RA in the knees, but this seems to be the response we normally get as soon as someone zeros in on “arthritis”.  The most common knee arthritis is Osteo, which is a totally separate thing.  (Very painful and disabling, but different.)  While well-meaning, this does get old after the first 100 times someone tells you this.  I almost feel like I need to walk around with a brochure.

4.   Never knowing how I will feel when I wake up.  This is FANTASTIC when planning things like LIFE, said no one ever.  Unfortunately, we all wake up with NO days.  Autoimmuners tend to have many of those,  making small things hard.  Ever need food but can’t move?  Better yet – get some autoimmune IBS with the inability to move.  Not so fun, huh?  I hate not knowing what I will be able to do the next day.  Every event is always a “maybe”, and friends eventually stop calling.  You can’t volunteer, because you are not reliable.  Sucks.

5.  Miracle cures that got rid of autoimmune arthritis in someone’s Uncle’s Roommate’s parakeet.  YES!  I actually heard that if you gather rhino hair by the light of the quarter moon, add it to rosehip tea, and chant in tongues – it will do absolutely nothing.    This is not a disease we did anything to get, but more likely a genetic one.  Yes there are environmental triggers that could be switched off, but most of those “cures” are hogwash or apply to osteo.  Again, I know people try to help, but it does get old.  If there was a cure – we would have done it.  Everyone is different, so you should try something if you want, but there is no cure yet.

6.  Feeling like I have Bird flu EVERYDAY, and going to work sick because I can never tell the difference..     Fevers, aches, stiffness, hot flashes, fatigue.  No I don’t have bird flu, I have autoimmune arthritis.  It makes you feel the exact same way, without having to purchase the pathogen!  What a great deal!  Many of us will not know if we have allergies, plague, or it is the arthritis being an arse.  We are so used to “sucking it up”, that we just assume it is disease and keep chugging away!  Sadly, what would knock most people off their feet, is just another day at the office.

7. Being searched at the airport EVERY TIME because of the insane amount of metal in your body.    Feel like the bionic person, or are you being followed constantly by scrap metal collectors?  Us autoimmuners usually have more fake body parts than most of Hollywood.  Unfortunately for us, it means we get very intimate with TSA every time we want or need to travel.  Those little cards the surgeons give you?  USELESS.    The best one was when I was asked if I could take my knee out for chemical testing.  Beautiful TSA.

8.  Being considered a junkie because a disease ate my bones and my body doesn’t make enough of its own pain killers to cope.   I have had autoimmune arthritis for life, and it has been super destructive since I was in my teens.  I am a granny now.  If I need opiates, then I shouldn’t have to feel like I am doing something wrong.  I also should not be punished for all those REAL junkies out there who are abusing their scripts.   At some point, cannabis may not work anymore for me.  (Hoping that never happens, this is awesome.)  Isn’t this why we have these meds?

9.  Walking like I am drunk because my feet suck.  People have actually asked my tea totalling rear if I was drunk before.  My feet don’t always work, so I wobble a LOT.  Now I just answer “Clearly.” and stumble off.

10.  Feeling like someone injected all my muscles with lead just for entertainment.  This is my chronic fatigue.  Muscles feel like they were injected with heavy metal and it take 4 times the amount of energy to complete tasks.  CFS is not being sleepy.  It is literally feeling like the undead.  Mindless, immobile zombie.  Hate it.  Completely.

While there are many more things I hate about autoimmune arthritis, these are some I rarely see mentioned (except 1-10).  Hopefully we can work together to change this and gain some legitimacy in our sickness.