Author: Barney Arronson

Surgery, bad outcomes and Rheumatoid Arthritis

| Barney Arronson

So, I have had both knees replaced. The first knee went well, I was moving around a little ahead of schedule. I did everything I could to get the knee back into shape. You really have to work when it comes to knees.

The second knee, my left had actually been my strong knee. It carried me as the right knee was in worse shape, more painful and so was the first to be replaced. Now everything has flip flopped. I lost most use of the left knee around October 2020, I had a replacement scheduled for February, first available, I really wanted this done.

Well early 2020 Covid hit, craziness at all hospitals and my surgery was postponed until the end of May. When I went in to get it replaced it started out bad. I was given an epidural which didn’t work or whatever. Within 24 hours I was screaming in pain and had a whole nightmare begin.

The situation with opioids has created a climate where hospitals are now reluctant to give pain relief beyond Tylenol. As it turned out, I had blood clots in my legs and one in my lung. I am lucky to be alive. I was in the hospital for about a month. I went home in very bad shape and the wound would not close, I was losing blood daily and wound up back in for a new surgery to *button things up*.

The buttoning didn’t go well, and I wound up in wound treatment getting hyperbaric oxygen treatments, which worked, after a few months. It is a pretty big commitment, 2 hours a day, 5 days a week for a couple months. It worked though, and that is what counts. Also, the treatment is painless and easy, just a lot of time.

After that, I had swelling which I still have. My left leg is now very weak and very swollen, 40% bigger than the other knee. I was told a few weeks ago, I need a new right shoulder and I don’t know what to do. I never want to do surgery again frankly…nobody discusses the chance that there is a problem, a bad outcome. I can’t imagine having a serious issue with my dominant arm…what’s a boy to do?

The net net is, pay attention to the details. Ask what can go wrong and you need to mentally prepare for that. Your doctors won’t focus on this and very well may just not address it. It only happens to a small number of cases. BUT, once it is YOUR case, it changes big time. AND if you have Rheumatoid Arthritis, you are at greater risk. I am not saying avoid surgery, I am saying, people have bad outcomes.

Interestingly, the same doctors that don’t talk about bad outcomes will have a lot of stories about their cases once you have had a bad outcome…and you will be surprised at the AMMOUNT of these stories your doctor will have for you. Bad outcomes with Rheumatoid Arthritis happen more often than you would think, and you need to be ready for it. I wasn’t, and it has taken a lot to get my head around it.

So, make sure you are ready for surgery, when it starts getting discussed. Go get a second opinion, I did, that didn’t matter, but you should get one anyway. This is really serious stuff, you are dealing with your life and mobility.

When Life sends you something other than an RX… :/

| Barney Arronson

Meditate, meditate, meditate…really, and it worked, it works…it should work. It is definitely worth a try :p I just saw an email and I find myself at the intersection of frustrating and …really? At the end of the day, figuratively and literally in this case. We all find ourselves facing challenges from time to time. Sometimes, the time is end of day, which has the potential to linger.

If you are a meditator, meditate, right? Uh, I forget sometimes or I get too frustrated to think about it. I am a pretty simple creature, I know that when I write stuff down and think about it, it happens more, so …

Get, meditation during challenges or mindful breathing if full mediation isn’t feasible into your mental tool shed.

I am inspired, I am going to do an *end of day when the day had challenges*, meditation … one day.

Mobility Issues, the tip of a very big iceberg.

| Barney Arronson

Mobility issues face a LOT of people and it was a driving reason for me to start this blog. Over the years as my issues continued to escalate I have been witness to countless mobility issues, from mild faux paux to egregious violations of human civility.

There is an awful lot to unpack here. The impetus for this post was started two days ago when I went to a place that will remain anonymous for now for coffee and to do a little laptop work. My situation was very bad two days ago, as those of you with RA know, severity waxes and wans over the days and 2 days ago it was in full effect. I was walking with a cane, clearly in pain and having a lot of difficulty walking and standing.

I found myself waiting at a hostess stand at a relatively empty large restaurant with open tables within a few steps of where I was standing. The hostess was dealing with something at the stand, and after what felt like too long, she asked if she could help me, I replied, I would like a table for one as close as possible as I was in pain and needed to sit down.

The employee was immediately flustered explaining no one was working in the front section, (close to entrance/hostess stand) then she proceeded to check charts and things to see where to seat me. I understand that this was a part of her job, to evenly balance the load of tables over the open sections in an effort to provide better service and even amount of work and tips for the servers.

So, shortly after this exchange she walked me to a table deeper into the restaurant. I struggled to the table and that is how my breakfast started. I had a similar situation this morning, with a different hostess, who once again, flustered wound up bringing me all the way into the back of the restaurant.

I have to say I wish these were isolated incidents but they aren’t. These days, restaurants struggle to deal with labor shortages triggered by Covid and all that followed. I imagine I will be writing a whole lot more about this subject. It affects people a little on the fringes, medically impaired and seniors. These are large swaths of people with disposable income that really should be given a lot more attention than they are.

There are accommodations required by law, but beyond that consideration falls off quickly IMHO. There is so much to consider not the least of which is the slip and fall. The HIGHEST risk and exposure of a slip and fall is to those higher at risk to suffer one and beyond that, they are more likely to have a bad outcome and put the business square in the sights of expensive civil action.

The reality of employee management and policy implementations that shape the way employees evaluate these situations, especially in establishments that are part of bigger organizations where *taller and stronger guardrails* around how the employee performs their job functions encourages less consideration of the customer and more concern in *not doing anything that will get the employee in trouble* IMHO. The net net being a poor customer experience and added risk to the establishment. It is baffling and understandable at the same time.

As I find myself at the end of this rant, I wonder to myself what is the solution? I guess we need a simple set of guidelines, suggestions and tools that will help businesses accommodate this significant market segment with disposable income.

Expect a lot more from me on this subject as it is increasingly difficult for me to navigate life and I really get frustrated that simple. no cost, seemingly simple changes to policy could have a positive impact on both businesses and customers are either not considered or ignored.

Ok, done for now…

Do I have Rheumatoid Arthritis?

| Barney Arronson
RA can get this bad, GO SEE A DOCTOR!

Regardless of what you heard, rheumatoid arthritis is an Insidious awful disease. it affects one and a hundred people and by a margin of 3 to 1 it affects women more than men. When caught early a lot of irreparable damage can be avoided and it is critical that you get this checked quickly by competent medical professionals. it is Progressive and chronic, stays with you forever and gets worse. 

Wow, when I think back, I was sure I had a minor knee injury from a fall on ice  a  week or two before my first appointment at an orthopedic clinic. I then had  X-Rays done at the knee and the knee looked fine and I kept complaining so they did an MRI oh, and then the MRI looks fine. but the strangest thing happened a few weeks later, the other knee started hurting.  So I went back to the orthopedic doctor and Clinic and they did another X-ray and that came up negative and then they did another MRI and that came up negative.  I had a follow-up appointment after the second MRI and that was when I was introduced to a different doctor in the orthopedic clinic. and the first thing he did was look at my hands. He talked to me for a few minutes and  he said he would like to do some blood tests.  I would later find out that it was dr. Calvin Brown the head of rheumatology  at Rush Presbyterian in Chicago.So that’s how I found out.

 Rheumatoid arthritis is a very sneaky disease. It is commonly misdiagnosed and if you don’t catch it early the damage That is done cannot be repaired. Beyond that, this is a progressive disease that is chronic and stays with you for the rest of your life. You have to keep it in check ! it is very serious, Everyday you lose by not taking care of it becomes more serious as the disease progresses. The good news for you is that there are a lot of other diseases that have similar symptoms that are not chronic. The Fact or here means you need to get checked, you need to get tested and you need to get it sorted out.

Primary care physicians I’m not always on the lookout for rheumatoid arthritis. What you’ll see  below  is the difference between the criteria used in 1987 as opposed to the criteria that was approved in 2010.  I was in the right place at the right time and was diagnosed early on. But many people are not Diagnosed early. I have found there are plenty of videos for doctors, from doctors, about rheumatoid arthritis that state rheumatoid arthritis is misdiagnosed quite a bit. More importantly people don’t even think about rheumatoid arthritis when they start seeing symptoms. 

1987 criteria

  1. Morning Stiffness lasting at least one hour.  Incidentally, many Rheumatoid arthritis patients experience morning stiffness 4 several hours. I know for me it’s 2 to 3 hours when the disease is active
  2. Soft tissue swelling or fluid in at least three joint areas simultaneously. it’s interesting, when I was diagnosed I had no swelling except in the knees that I was aware of, furthermore, it would only affect one knee at a time and only for a little while Less than a week
  3. At least one area is swollen at the inner wrist mCP or pip joint , Which is all in the hand. Once again I was very lucky to be diagnosed so early on in the late 90s 
  4. Symmetric arthritis, meaning the same thing on both sides. Again focusing on the hands
  5. Rheumatoid nodules,  I still don’t have these
  6. Abnormal amount of serum rheumatoid Factor. This is discovered with a particular blood test but if you don’t get the blood test well … 
  7. erosion sarbani decalcification on X-rays of the hand and wrist. Again really focused on the hand and wrist. add a recent doctor visit with an  internist who assumed that I had very mild r a because I didn’t have the proverbial jacked-up wrists. 

Anyway, you need four out of seven of these to  be diagnosed with rheumatoid arthritis back in the day. I didn’t have morning stiffness. I had soft tissue swelling in one joint but then it would move to another joint and then back to the other joint and it would do so over the course of weeks. I had no swelling in my wrists or pain anywhere and I didn’t have symmetric arthritis. I had one knee bothering me at a time. rheumatoid nodules I didn’t have but RA factor I did have.  And again I did not have anything going on in my hands so it would be unlikely that they would have done an x-ray of the hands and seen  erosions. For what it’s worth I’ve had rheumatoid arthritis for over 20 years and I still don’t have noticeable erosions in my hands and I just had it checked a few months ago.  Some important points here,  x-rays only catch these are oceans after 40% of the damage is already done.  I’ve been dealing with pain in my hands since my flare up over the past 3 years. The joint space is still intact for now but I have visible swelling in my hands and it’s very painful at times. Other times it’s not as painful and I’m convinced that my hands were saved because of the treatments I had early on.

 It is very important 2 call out here that Rheumatoid nodules don’t show up until the disease has progressed quite a bit and an x-ray cant catch the intrusion caused by rheumatoid arthritis until 40% of the damage is already done. There’s nothing you can do at this point to fix it. You can only slow it down and you really want to make sure you’re doing everything you can to slow it down and address Rheumatoid arthritis early on.

So again this is 1987 criteria but widely taught and updated in 2010 but according to this I didn’t have our a at the time. Fortunately I had Dr. Calvin Brown Involved in my case early on. My RA was caught very early and I’m sure that I enjoyed my 30s and 40s a lot more than if my disease had not been caught so early.

2010 Criteria 

The new criteria For diagnosing rheumatoid arthritis is  now done on a point system. 6 points means you have Rheumatoid arthritis.  Below is a slide from A presentation I found published by the Icahn School of Medicine. The net net here is they look at blood and joints And the duration of symptoms 

So Using the new system I had two large joints which gave me one point, serology I had hi CCP three points and duration of synovitis was longer than six weeks so I got a point there and I had abnormal CRP making 6 points which unfortunately for me was a winner.   So I really wish I didn’t have rheumatoid arthritis but I am now very grateful that doctor Brown figured it out so quickly.

But, I already know I have  rheumatoid arthritis oh, the question is do you? 

Deep Sleep Videos on YouTube

| Barney Arronson
Humpback Whale Breaching

Sleep videos can be very helpful to those having trouble getting and staying asleep. I started using them when the pandemic hit. It was weird, my RA was flaring up, my mind was all over the place. My father to whom I was a caregiver had serious issues with a wound that wouldn’t heal. He was facing a visit to the hospital when hospitals were places for covid patients. It was so scary!

I remembered a trip to the lake region of Chile. There were naturally heated pools of geodesic heated water next a small stream. I fell asleep twice outside next to the stream. At night I would fall asleep the minute my head hit the pillow.

That experience had me reaching for the remote to play a video of a babbling brook. Again, I fell asleep very quickly and when I woke up to go to the restroom in the middle of the night, the soothing sounds had me back to sleep in no time at all.

I started looking into these videos and using them and they worked. In my searching for holistic alternatives to rheumatoid arthritis I noticed the healing tones included in some videos and tried them out and I felt better. All in all, I decided to make my own videos with my own content while leveraging what I had learned from the other videos. I feel like natural sounds are….well…natural and soothing and helpful while going to sleep. By all means, please try out my videos. I am hoping to help others who struggle like me.

Sleeping with big trees :)

| Barney Arronson

These are the coastal redwoods close to Willits, Ukiah and Leggett. There is an amazing 20 mile drive on Hwy 20 just loaded with these beautiful trees and hiking. Unfortunately, I have mobility issues but there are wonderful little areas where you just pull off the highway and walk around and take pictures. Even some with improved trails. Really great for those with mobility issues. I will be posting some video I took while driving. This video is a compilation of images I took with healing frequencies and calming music. I use these videos to sleep. I used to sleep with the TV on just playing news and stuff. Now I use these sleep videos, they are nice, they have good energy and I sleep great while listening to them 🙂 Give it a go

Diet and RA and ugh!

| Barney Arronson

I have been heavy all of my life. My Mom was big and she was a big proponent of the *clean your plate club*. Over the years I had a few big swings in weight where I was able to lose over 100 lbs twice. Why is it so much easier to put it on than take it off?

Anyway, with RA we need to do what we can to reduce stress on the joints and weight loss is at the top of the list. Furthermore, the new information on inflammation and impact on those with Rheumatoid Arthritis demand that I try to adjust.

I have just ordered some raw, plant based, sustainable chips from Citizen Raw! Run by a friend, these chips are small batch and locally produced. Seems like a great place to start. I am getting a few other things as well and we will see if I can walk the walk so to speak.

I will keep y’all appraised of the situation 🙂

3 1/2 hours of Classical music with Hummingbirds

| Barney Arronson

Hey there! So I have been futzing around with making image sequence videos using photos I have taken and some music I found on YouTube’s free audio. I am pretty sure anyone logged in with a gmail account gets free access. I grabbed a few of my favorites that I thought went well with this cute little birds.

I have tens of thousands of photos of them. I figure in volume lies some success 🙂 what can I say? It is really hard to focus on them when they are moving…and they are always moving! I am just amazed at some of the pictures I am able to get with this little guys.

Sometimes I get them with their tongues sticking out, which I love. This shot is just beautiful. Anyway, I did one of my videos which is good to run in the background while you work. Here it is for convenience!

The Delta variant, a booster and RA

| Barney Arronson

So, besides Xeljanz being used for treatment of treatment of Covid pneumonia there is nothing out there I can find regarding the impact of a booster shot with a google search of ra+delta variant+ covid. Currently, vaccinated individuals account for 9-11 % (depending on what you read) of people contracting covid.

Anyway, just yesterday I wrote about my experience with the vaccine, prompted by the glut of news stories regarding the Delta variant and the increase of cases. Furthermore, Pfizer is building a Delta variant specific booster and is saying after 6 months there is a drop in efficacy. At the same time experts are saying a third shot should be sufficient for a long period of time.

Here is the deal, get vaccinated, get the boosters, get it get it get it. Seriously? How is this even a discussion…unfortunately it seems that some politicians and news outlets are still pushing freedom from oppression and the government cant make me do it. I am all about freedom as long as it doesn’t intrude on my freedom. And a highly contagious diseases like polio, the measles, rubella and others have long been forgotten due to vaccines just like the ones for Covid.

Frankly, it is shameful to politicize this life threatening issues IMHO and it is all the more reason for us, those with autoimmune diseases to ensure we do everything we can to protect ourselves and our families. GO.GET, VACCINATED!

Rheumatoid Arthritis and the Pfizer vaccine for Covid

| Barney Arronson
Covid Pfizer Vaccination

Before I start, I want to say I FULLY endorse getting vaccinated. My experience was difficult but I know several people who died from Covid as well as friends that had it and are now dealing with lingering problems. GET VACCINATED!

So I got the first dose of the vaccine around the beginning of March and I remember my 2nd dose being 4/1 …on April fools day of all days. I had a sore arm overnight with the first dose and no other impact. I was sure that I wasn’t going to have any of those issues people with Moderna were having. At least that is how I remember it, boy was I going to learn how wrong I was. I was really excited at the time. I planned a road trip with my sister for 10 days who had just gotten the vaccine and we would be clear in the beginning of April.

Fast forward to April Fools Day…the first thing was the injection felt like it was *on* my collar bone. The nurse stated she was doing that for a reason and I can’t remember for the life of me why and I went home. Within a few hours I started feeling sick and wound up laying down and that was all she wrote…wow. Later in the evening I felt like a train hit me.

I was running 101 fever which lasted for 3 days and beyond that, I experienced what I will call, a super flare up. I had experienced significant morning stiffness and this was the ultimate ultimate stiffness. The pain had me in tears in the mornings and wondering what would happen. I was constipated, swelling everywhere, I started going to doctors, I went and went and went. I probably had 7 appointments. Rhuematologist, Primary care, orthopedic, gastro, and finally, Pain management. It took about 7 weeks to get help, the help came from pain management.

The Pain management doctor gave me a Steroid Taper pack which is a 5 day steroid course that starts with 6 pills,5 pills…until you are done in 5 or 6 days. The affect was fast, within 24 hours I began feeling AMAZING, the next day was amazing. The impact of a course of steroids during a flare up is hard to explain. You need to experience it. Anyway, I got about 6 weeks of relief and I am better than when the ultimate ultimate stiffness started. Most importantly, I know for a fact that I am protected. I was exposed to an entire 6 person extended family who had covid at the party and discovered it with 36 hours of my contact with them. Two asymptomatic (mother daughter) the others were down for a couple weeks with a serious case of it. Beyond that I am really living my life, unmasked whenever possible because of that vaccine.

So the net net is ( I like saying words twice) I know I am protected, I am very glad and grateful to be vaccinated and I would do it all over again in a heartbeat…just ASK FOR A STEROID PACK if you have a reaction!