As I sit down to write this post, I’m wondering, ‘How do I segway from writing about my spiritual awakening/ journey to writing about the day-to-day Bullshit of “real” life? ‘
Then I thought of that funky song from the 80’s by Soul II Soul ~~
Back to Life, Back to Reality, Back to the Here and Now…
So, on that Note..
After my Neck Fusion in 2020, the surrounding muscles/tendons/ligaments/fascia of the right neck/shoulder/upper back continued to ache and feel like a tightrope. This was one reason why I had the surgery in the first place; hoping to alleviate some of that constant pulling/taught sensation. Unfortunately, it was not any better and possibly worse now, due to the restricting movement. The surgery had helped with the numbness and tingling extending through my right arm and a little bit of pain but the surrounding tissues were still extremely sore.
During the Spring of `21 I found myself at appointment after appointment trying to find some kind of relief. I tried Acupuncture with mixed success: only the first treatment was wonderful, after that– nothing. I went to a wonderful Chiropractor for a few months (and consequently, discovered the amazing NYC Halal Eats whose Lamb & Rice Combo is TO DIE FOR!!!) Dr. Noomie did very gentle work to align my upper and lower spine, hoping to alleviate some discomfort. I felt on Cloud 9 after a session but the feeling didn’t last too long and eventually I stopped going. Same with Medical Massage — it felt incredible for a few hours, but never lasted! I even resorted to Neck Injections — again! All of these modalities provided a small bit of temporary relief, but nothing lasting. So I continued on, living in pain…
As soon as the COVID-19 Vaccine was available for medium-risk 50+, I jumped on board. Although I’m not officially in the high-risk “comprised” community, I couldn’t chance getting the virus given my situation. As soon as they were able, my husband and sons received the vaccine as well.
In May (just as Diane Hiller, medical intuitive had predicted) I had my 6th joint replacement/12th surgery (not including two c-sections); for the injured knee that had been “loose” since I was a kid. It had finally begun to really hurt and made stairs or any amount of standing/walking vey painful. When it came time to have it done, I went to one of the best orthopedic surgeons — Dr. Perry Green. I had met Dr. Green 22 years ago when he performed my very first joint replacement in 1999 — my left hip shown here, which is still going strong to this day! You can also see my Lower Lumber Fusion – 2010 also going strong!
The operation went perfect. I had a nerve block so that my entire leg was pretty numb for the first 24 hours or so resulting in minimal pain. I stayed in the hospital one night and recuperated at home. The hospital sent a Physical Therapist to my home for the first week to teach me the various exercises to ensure my knee did not stiffen up. I did my exercises diligently and eventually made a full recovery with wonderful range of motion and almost no pain! Once the incision was fully closed, I applied my THC/CBD cream which helped with post-surgical pain and scar healing. Now, the incision is barely noticeable. I’m able to walk and do stairs without any pain now. However, after being active for a while, it starts to swell a bit and gets a little achy. Just my reminder to sit down and take it easy!
So, somewhere a while back I came across this revised pain scale. I just had to print it out and save it. It now hangs in my studio. The creator is Allie Brosh, the genius behind Hyperbole and a HalfTM. I may just have to make copies and take to all my doctor appointments!
During the summer I was experiencing heart palpitations, exhaustion, and almost constant, relenting, all-over hot flashes. Any amount of activity would bring at least one (and usually all three) of these lovely symptoms crushing down on me. Needless to say, I wasn’t able to do a whole lot of anything and I was cranky as hell. With COVID-19 still in full swing, we were very careful and didn’t venture out too much; I felt like a caged animal: like an angry, sweaty, badger and since I wouldn’t be able to start HRT until the Fall, I had to “sweat” it out.
I turned my attention to my blood pressure. I had been on high blood pressure medicine years ago but then was weaned off and hadn’t been taking meds for it ever since. I purchased a new BP cuff and started using it regularly: it was evident that something was wrong — the numbers were incredibly high and I was worried. It took a couple of months and two medications to get things under control.
I finally decided to have a cervical surgery for my ongoing neck/shoulder/nerve issues. Over the past 7 years, I had done everything under the sun to get some relief including anti-inflammatories, opioids, muscle relaxers, medical marijuana and CBD, injections, massage, TENS, and physical therapy. Due to my J/RA for almost 50 years, my neck is auto-fused in two places and I have severe degeneration with both spinal and foraminal stenosis resulting in pain, tingling, numbness and nerve damage.
In mid July I had an Anterior Cervical Discectomy and Fusion (ACDF) C4-5. The incision is made from the front of the neck, the affected disc/s are removed and replaced with a spacer, and the surrounding osteophytes are removed. Then a small plate and screws are placed to fuse the level.
Overall the surgery seemed to help a wee bit but not as much as I had hoped. But more about that later…
January 13th, after 5 days in the hospital, while awaiting my new elbow components, my poor body had had enough! Early in the morning my IV began to really hurt – it hadn’t been moved since first placed on the 9th. My nurse had a terrible time finding a new vein that would cooperate — after two or three tries she found a spot that finally succumbed. I’m pretty used to this as I have very small veins, but it still hurts a lot. This episode would set the stage for what would be the most difficult day of my life…
The young phlebotomists came next for my morning blood draw. Once again, my veins were playing hide-and-seek. Every time they found a potential candidate, the vein would collapse, this went on for a while, until finally, maybe after 3 or 4 tries, my body finally agreed to play nice. By this time I was in tears, partly from the physical pain, but mostly from the emotional pain.
Pressure Sores
In the late afternoon, my splint/bandages began to pinch, hurt, and itch. I gently pushed aside a couple of layers and to my horror, this is what I saw…
… I slowly peeled back a few more layers… I was horrified. I called the nurse and showed her what I discovered and demanded she call my doctor. She called the orthopedic resident on staff — who of course was nowhere to be found — after he/she didn’t answer the call for what seemed like hours, I asked her to call MY residents who were part of my surgical team; of course they were in surgery!
Around 7PM my two residents finally appear. After showing them what I discovered, Dr. F began documenting on the computer, while Dr. L, who seemed annoyed and unmoved by my situation, took a closer look. He said they just looked like swelling/ pressure sores — basically no big deal. I told him it was really bothering me and uncomfortable and asked if they could please loosen the bandages — after all I was going into surgery the next morning. He quickly pulled out his cutting shears, cut through the top of the bandages and then ripped them apart in such a manner that I screamed in pain. No apology, no nothing… Dr. F came over, carefully took a look and seemed genuinely concerned about what he saw. They finished up the documentation, took a few pictures, and just left. They didn’t bother to put a clean dressing on or wrap my arm back up — they just left.
I sat there in disbelief about what had just happened; tears running down my cheeks, anger and sorrow in my heart. After a few minutes I worked up the courage to slowly pull all the torn, shredded pieces of dressing and bandages off my bloody arm and saw the full extent of the damage…
Pressure Sores
As I lie in the hospital bed, waiting for morning to come, the day of my second surgery, I started thinking about everything – everything this stupid disease has taken from me — all the things I could never do — and would not ever be able to do in the future — knowing full well that things will only progress and I will probably die young from some related heart issue. People with RA have a higher incidence of inflammation around the heart and typically die about 5 years earlier than their peers. When I was younger and more stupid, I asked a psychic how old I would live. 54 was her answer. I know it’s foolish to believe her, but who knows… it’s been in the back of my mind ever since. There are days I welcome the thought. When you live with a chronic disease all your life, your view on living and dying are very different than most. I recently read a quote from a lady in my situation, she said, “I’m not afraid of dying, I’m afraid of getting older.” I couldn’t have said it any better.
January 14 finally arrived and the poor phlebotomists arrive to take my blood early in the morning. I took one look and said vehemently, “NO!” I must of scared them, by the look in their eyes, I felt bad and explained that my veins had collapsed the day before and I’m barely hanging on here by a thread, and unless they ABSOLUTELY NEED MY BLOOD, THEY ARE NOT GETTING A DROP! They double-checked the order, confirmed it with the nurse and left!
A few hours later, it was surgery time. By now, my husband had come and joined me. I filled him in on the trials of the day and he felt horrible and wanted to kill Dr. L (me too!). While I was getting ready to head off to the pre-op room, the pre-op nurse, comes barreling in, exclaiming that I need a pregnancy test! My nurse was there as well, getting all the pre-op documentation done on the computer, I’d surmised. By this point, I had had enough, was so lethargic, and depressed, that I basically ignored her, muttered underneath my breath that I wasn’t pregnant and headed off to pee one more time. She comes to help me and I’m like, Bitch Please I’ve been doing this 10 times a day since I got here, all by myself, I DO NOT need or want your help!!! She kept insisting. I finally broke and yelled, “I am not pregnant! I am 50 years old and had a tubal 20 fucking years ago!” This time I didn’t feel bad — I’d had enough incompetence for the day — week — month — year to last a lifetime!!! My nurse came to my rescue and the two of them got into it – I must admit, as I sat pissing on the toilet – I small smile came across my face!
As I was in the bathroom – the two porters came to take me down to the pre-op. As you can imagine, I was in NO MOOD for jokes or humor. One of the guys kept trying to make me smile or laugh, I know his heart was in the right place, I just wasn’t having any of it! I wanted to punch him in the face as we boarded the elevator. You could tell the other guy could “read the room” and knew I was NOT happy. They delivered me to the pre-op room. My “lovely” nurse joined us. I apologized for biting her head off as did she. It was probably late morning/early afternoon by now and of course, by surgery was delayed. My OR was busy and my surgeon was at a different hospital finishing up surgery with another patient. So, we waited for a while. It was a nice breather after all the chaos.
An hour or so later, the pre-op stuff begins. Once again, the short respite flew out the window— My IV had stopped working properly and needed to be replaced, again, for surgery. The nurse tried without success, a few times. The anesthesiologist resident tried, unsuccessfully, a couple times. The chief anesthesiologist – who was in my first surgery was standing at the end of the gurney – I was staring into his eyes as the pokes continued – tears now streaming down my eyes then (as they are now as I relive this), I could see him tear up as well. Even after the ultrasound was called in so they could locate my veins – it wasn’t working. He finally sent the resident away and jumped in – locating a viable vien– eventually. All the while, I was praying for the Lord to just take me! Take me away from this life, from this pain…
By this time, Dr. Wiater had seen the images of the pressure sores. So when he arrived, an hour or so later, during our pre-op consult, he said he wasn’t sure if he could proceed with the surgery as planned; it would depend on what they found once in there — the extent of the skin wounds. I was so “dead” by this time, but I could feel my blood pressure rise as I glared into his eyes; I was speechless. Eventually I agreed to whatever he deemed best. Shortly afterward, as the drugs entered my bloodstream, I was able to find sweet peace…
Hours later, in post-op, I awoke to the most horrific pain — it was as if nothing was getting through or into my veins. I was crying and yelling. The nurse claimed they had given all they could, “I gave you Fentanyl, I gave you Dilaudid, I gave you the strongest stuff we have!” It wasn’t working. It wasn’t until she added Oxy to the cocktail that I began to feel any relief. Eventually, my pain subsided, my blood pressure calmed down and I was able to breath again. Once things were under control, I learned that indeed my elbow had been replaced; the wounds, though nasty, were superficial.
I went home two days later to rest and recuperate from the surgeries; my nightmare– my D-Day– one of the worst weeks of my life — was finally behind me.
In November I had my right elbow replaced by the same orthopedic surgeon that did the left in 2016, Dr. Michael Wiater. My right elbow has been bent ever since I can remember. Looking back at pictures of my childhood, it probably began at age 4-5. I remember doing physical therapy for it as a kid. I was very stubborn and didn’t follow up with the home exercises as I was instructed. It never hurt too bad, and as a kid, I probably didn’t pay too much attention since my ankle pain overtook everything else. Eventually, it continued to restrict and stayed in @ a 45° angle. Over the last few years, it really began to hurt and I became more self conscious of it, especially in short sleeves, summertime, etc. I knew this one would be much more of a challenge, but since the left elbow surgery was a complete success, I decided to have the right one done as well.
Dr. Wiater had a much more difficult time in the OR with this one. Usually it can be done in about 2 hours — it took him four! Apparently, my bones were very hard and even after the new elbow was in, the joint could not be fully straightened– probably due to the soft tissues. Needless to say, I was in more pain afterwards and recuperation took a bit longer. Physical therapy helped regain function and it doesn’t hurt anymore, but my arm may never be completely straight.
After this surgery, my painting life slowed way down and eventually came to a standstill. I found other creative outlets to keep busy and after a while I was afraid to paint. It’d be two more years until I would pick up a paintbrush again.
I have been distant from WordPress and blogging for quite some time. Life has been hectic but progress has been slow.
The boys are both back in school and into the swing of things, my husband has been traveling internationally for work, and I’ve been recuperating from my left elbow replacement surgery on the 19th of September and a pinched/aggravated ulnar nerve in the right arm due to overcompensation.
Once again, my mom has been a Saint helping me with household chores and the boys – I couldn’t do any of it without her💕.
Breaking Bad’s Walter White
Thank God for Netflix; with two “gimpy” arms, there’s not much else one can do! I watched the entire series of Breaking Bad over a three-week time period, discovered Versailles on the Ovation channel and watched several docudramas to learn about the French Monarchy from Louis XIV to XVII.
Prior to my surgery, I started a Portrait Class at the BBAC in the hopes that I would only take a few week hiatus to heal. After all, it is my non-dominant arm and I’m quite the pro by now at this surgery thing – I never anticipated my painting arm to be affected! I started PT this week and am using my at home TENS machine for the nerve. I’m hoping to get back to class next week. Fingers crossed.
I had also taken on a commission for a friend of mine that I began in September. I am working on it from time to time when I feel well enough. Thankfully she’s being completely understanding. It’s a double full-body painting of my friend and husband based on a candid photo taken during a professional outdoor photo shoot. It’s proving to be quite the challenge, but I am gaining on it, “elbow-it” slowly…
My hands have been hurting — a lot! So, I took a breather from class for a couple of weeks to rest my wrists and hands. X-rays reveled, to no surprise, the cartilage is gone and my wrist bones are all smooshed together. My elbows are also in bad shape! Come to think of it, my shoulders are the only joints left in my entire body that have not acted up! Yet! Touch wood, now! As my Indian family would say.
I fear that the very thing that I love to do will be the downfall of me — again!
The next few years would prove to be a very difficult time both physically and emotionally. I had two growing, busy, little boys and my arthritis was rearing its ugly head once again. I was having a lot of trouble with my lower back and the nerve block injections I’d been receiving for two years weren’t working anymore. My ankle joints had been completely shot for a long time; there was no cartilage left and the pain was getting worse. To make matters worse, I developed severe colitis that landed me in the hospital on Ethan’s second birthday. Needless to say, I fell into a deep depression…
Over the course of three years, it took a therapist, one GI Doctor, two incredible Orthopedic Surgeons, my loving family, and a fuzzy orange tabby, to put me back together again!
In March of 2010 I had my left ankle replaced using the (STAR) method. I had my right one done 14 months later. My surgeon, Dr. Gregory Berlet is a leading expert in the field and had been involved in a variety of clinical trials. He is a remarkable man and a terrific doctor. My life has been forever changed because of him!
In between the two, I had back surgery. After meeting with several disappointing doctors, I found Dr. Mick Perez-Cruet, another lifesaver! He literally “wrote the book” on minimally invasive back surgery and is also a wonderful, kind man. In December of 2010, I had a lower lumbar fusion. He discovered that the cartilage had worn completely out, thus causing my agonizing pain. Once fused, the pain was gone immediately! Compared to the ankle surgery, this one was a piece of cake! I was up and “running” in a few weeks.
Jennefer Chaudhry 