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!
By the end of 2020, I was deep down the rabbit hole of self-pity and depression, as mentioned in my previous post, Dark Night of the Soul. I needed to get help. Months prior, my rheumatologist had given me the name of a social worker who was also her patient but I hadn’t called.
I hate starting with a new therapist. I had tried it years ago when the boys were little. But it wasn’t helpful. It’s difficult finding a therapist that I like that has experience treating a person like me — with a life-time of chronic illnesses that affects your mental, physical and emotional being; not to mention how it influences all relationships — especially marriage, children and maybe, and most importantly, the relationship to yourself! Could they understand why you act selfishly, always protecting; in that fight-or-flight mode? Why you may get defensive very easily because you feel constantly under attack, internally and externally, and misunderstood by everyone. Can they help with your loneliness and difficulty relating to peers, even your closest friends, because it feels like they live in a completely different world? Can a therapist understand how these diseases have shaped me so profoundly and impacted my every choice, decision, action, every single day of my life?
Let me back up and give you some history of my journey, so that you may have a better of understanding of why I was so painfully depressed
1972
I was diagnosed at age 2 with Juvenile Rheumatoid Arthritis after a week long stay in the hospital, upon complaining that my legs hurt. In 1972 parents weren’t allowed to stay with their children so I was alone most of the time. I was told that they had trouble finding a good vein (a challenge to this day) so they used my neck.
Fast forward to my earliest memories with this disease. Grade school was extremely difficult — by the time I was five years old, the JRA was attacking my ankles and knees mostly but would eventually attack every joint in my body and I hurt all over. I’d wake up extra early to soak in a steaming hot bath and take medication every single day and night so that I could function. I couldn’t walk the two blocks to school with my classmates because it was too far. In gym class, I had to sit on the stage and watch everybody else have fun and play. I couldn’t sit on the hard gym floor during assemblies so I took a seat on the sideline with the teachers. I hurt so much that I couldn’t make it across the field to the playground and had to hang out by myself or with the teachers who never provided me a seat because they were unaware. I couldn’t focus on school work and felt so different than all the other kids. I couldn’t walk home from school so I’d wait up to an hour sometimes in the office for the cab to pick me up because both my parents worked and the taxi company had forgotten me.
I missed a lot of school because of doctor appointments and suffered through countless blood draws of tiny veins that rarely cooperated. I learned how to “read” x-rays by the age of 8. Monthly gold injections became the norm and enormous needles drained my giant swollen-grapefruit-knees. There was often PT with endless lists of take-home ROM exercises to keep my joints from freezing up, which I hated, and rarely completed. It was difficult to play with neighborhood friends; to keep up with them on a bike, to play hide-and-seek because I could never get away fast enough.
The world was a very lonely place. I spent a lot of my childhood alone, inside and by myself. I had a lot of time to think and I pondered the big questions about life — the type of things that most people don’t even begin to question until maturity — if at all. I viewed the world as unfair, uncaring, unknowing. I felt so isolated, sad, angry and depressed. I questioned why God would allow a child to suffer so much…
1971 – 1978
1982
Thankfully, by middle school, the active inflammatory JRA finally quieted down a bit and I was able to have some fun, make more friends and just be a kid. However, the damage caused by 10 years of the disease had begun to take a toll on my joints and this part of the disease — the breaking down and eroding of cartilage and damaging bones and surrounding soft tissues — continues to this day. My first surgery was at age 12 for a loose knee-cap. The surgery didn’t work and that knee-cap slid back-and-forth for 40 more years until I finally had it totally replaced. My second surgery I was 15 and a sophomore in high school. I woke up one morning and couldn’t move my left ring finger; the arthritis had eroded my wrist which severed through the tendon causing my finger not work anymore.
1980 – 1984
1988
My freshman year in college I fractured my calcaneus, or heel bone, from walking too much. On the up side, I was allowed to have a car on campus. That’s when I obtained a handicapped placard — at the ripe old age of 18!
1999
When I was 29, and newly married, my left hip started locking up and causing excruciating pain. There was no more cartilage left and it had to be replaced. That was my first joint replacement, a total hip, which is still going strong 23 years later (touch wood!)
2003
When I was 33, and pregnant with my first son, I contracted Viral Meningitis and was taking Vicodin (per my doctor) so that my head would not explode. Two months later we found out there was something wrong with our baby. After several blood tests and ultrasounds it was confirmed that he had a neck mass. During the remainder of the pregnancy, I had countless ultrasounds and MRIs. Thankfully the mass was growing at the same rate as him so I was able to proceed with the pregnancy. Two weeks before Dylan was due, our hospital told us they wouldn’t deliver him because we were too high risk and were transferred to U of M where we knew nobody. At my 40-week check up they noted his heart rate dropping, admitted me and began Pitocin. I labored painfully until dilated to a six before getting an epidural.
Eventually his heart rate dropped again and they performed an emergency C-section. The cord was wrapped around his neck three times and he couldn’t breathe because the tumor encroached his airway. He was whisked away immediately and intubated. Baby Dylan had life-saving surgery at five days old. He stayed in the NICU for three weeks until we could finally take him home. During that time we stayed at the adjoining hospital hotel while I recovered from the C-section and was pumping breast milk around the clock.
During the first year of his life we fought to keep his weight up because he couldn’t latch on and had difficulty sucking from a bottle. We did local occupational therapy and had many trips back-and-forth to U of M Hospital. In the end, he pulled through everything like a champ but by October I hit bottom and fell into a delayed postpartum depression. I began taking antidepressants and slowly came back around, but my challenges would continue. Dylan had two more surgeries by the time he was five; one to remove the rest of the tumor and the second to close the gap left behind in the pharynx. He had many years of speech therapy, some occupational, then later vision therapy.
I am so happy to report that he has become an exceptional young man; brilliant, caring, and kind with a gentle soul. I know that although he had a very difficult start in life, he is meant to be here and will help to bring positive changes to this world!!!
When Dylan was about two-and-a-half, we started trying for another baby. By this time I was considered “old” at 37 so I had to undergo genetic testing. Plus, we wanted to understand the odds of having another baby born with challenges. As soon as we had the “all clear” I had a spontaneous miscarriage. Then a second at 10 weeks along and I was heartbroken. We had heard the tiny heartbeat and we were so happy. I had a scheduled D&C and we never found out the sex of the fetus — it was too sad.
2007
Ethan Michael was born via C-section in February 2007. He was healthy and adorable with a full head of hair – just like his big brother. I had gained about 30 pounds and was “all baby”. However, the strain on my lower back was excruciating and I asked my Doctor to please deliver him as early as he safely could. Ethan’s start in life was so easy — he slept really well and had a voracious appetite. At his 1-year check up he was 30″ and 30 pounds!! He was the happiest little (big) guy and adored his big brother! He made all kinds of noises and his hearing was just fine but actually said very few words by age 21/2. He was diagnosed with Delayed Speech and had to do therapy for a couple of years. I am happy to say that Ethan has a wonderful vocabulary and has no issues with speech anymore.
2009
February 1, 2009 I landed back in the hospital. The prior months of 2008 I had been experiencing a lot of diarrhea and had lost about 20 pounds (which is a LOT for me because I’m petite to begin with). I was in so much pain in the gut that I couldn’t keep anything in. Everything hurt to eat or drink, even water, and I became super week. So, on my baby’s 2nd birthday, instead of seeing Elmo On Ice, I was having a colonscopy in the hospital. The biopsy confirmed that I had Lymphocytic Colitis — inflammation of the large intestine; my second chronic autoimmune disease. It was around this time I began to experience occasional severe night sweats. After blood tests and an MRI everything came back just fine — I wasn’t “sick”, I had begun peri-menopause at age 39!
By the end of 2009, I had had enough!!! Enough pain, enough sadness, enough challenges to last a life time. My boys were now 6 and almost 3, I was a full-time stay-at-home mom whose body was falling apart and whose mental health was hanging on by a thread. My lower back felt broken, my ankles were mush, I had sciatica running down my right leg, and my colon was a wreak. I was taking pain pills daily along with my other cocktail of prescriptions, adding alcohol into my coffee in the morning and crying all the time. I had support from my mom, who helped me tremendously with the boys and my husband did his best to support and comfort me and take care of the boys when he could in the evenings and on weekends. But, I was in agony and seriously thought about taking that entire bottle of pills more than once.
2010/2011
In March of 2010 a small ray of light peaked through the clouds when I had my first Total Ankle Replacement. After being turned down from the only local orthopedic surgeon performing total ankles at the time, for being, “too young” at 40 I did my research and found a doctor in Ohio who would prove to be my knight in shining armor. Dr. Berlet said my ankles were basically “mush” and that most people would be in a wheelchair by now. In December of that same year, after 2 years of failed back injections I had an S1-L3 Lower Lumber Fusion. In the summer of 2011 I went back to Ohio and had the right ankle replaced. I wrote a previous blog post about this time called Lost and Found.
Finally, I had a bit of a reprieve from the worst of my disease. For the next 5 years I focused on being a mom, a wife, and following my passions. I volunteered at my boys’ school, we took a few incredible trips, including the Dominican Republic, Paris and New York City. I took several art classes, learned oil painting, and created this website.
2016
In 2016 I decided to have my left elbow replaced. It had begun to bend and was starting to hurt. In the summer of 2017 I had surgery to remove part of the underside of my tongue due precancerous cells from Oral Lichen Planus; my third chronic autoimmune disease. In November, I had my right elbow replaced for the first time. After this surgery my painting quickly came to a halt but I found other creative outlets such as Family Genealogy and taking on-line classes to learn about Essential Oils. In the summer of 2018, I injured my right knee in Cancun and in the Fall I fell off a bike and broke my right clavicle and suffered a black eye.
One year later, in the Fall of 2019, I finally picked up a paintbrush again and took a class from a well-known local artist which I detailed in several previous posts. The class was incredible — I learned more in that one class and met the most incredible group of women — I was in heaven, but it wouldn’t last. I had put way too much stress on these new elbows by carrying over the weight limit (10 pounds each) and painting furiously. I suffered the consequences dearly and had loosened both components of my right elbow. Another surgery to kick off the New Year! Yippie!! That’s the one that was my D-Day — a foreshadowing of the year to come, not just for me but for the world at large. Cue the High Blood Pressure (fourth autoimmune disease), unrelating hot flashes, and first neck fusion in the summer.
2021–
So, by the beginning of 2021, I was more than ready to make that call to the therapist — the one my rheumatologist had recommended over a year ago. I knew I was drowning and needed a life-preserver. Even if she couldn’t solve my full-blown existential crisis, she could relate to me as a woman, as a wife, as a mother and as someone living with chronic disease.
We talked for many months over the course of the year. She was able to empathize with my situation probably more than a “typical” therapist ever could. It really helped to tell all my bullshit to somebody objective, who didn’t judge, and who wasn’t related! I felt a bit less alone and a bit less depressed. Although we didn’t create any miracles, I do feel that she helped me take one small step out of that deep dark hole. And for this I am grateful!
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.
This is gonna be a tough one to write about – but hopefully it will be cathartic. Although I’ve shared the details with my family and close friends, it’s still hard to relive it again. Red wine is poured — here we go…
Going into my elbow revision surgery on January 9th I wasn’t too phased or worried, I just wanted it over and done with so I could be back home, recuperate, and get back to life and painting again. Afterall, this would be my 10th surgery related to my arthritis/autoimmune issues– I could practically sail through it in my sleep – or so I thought.
Prior to the 9th my doctor was concerned about an infection being the reason for the loose components, even though I shared with him that I had probably caused it from overuse and lifting over my limit of 10 pounds. I had preliminary blood work done to check for any signs of infection — all cultures came back negative. We had talked about the possibility of a two-part surgery; the first to remove the damaged components while antibiotic spacing beads would secure the arm and the second, a month or so afterward, to place the new components. Needless to say, I was less than thrilled with that idea but agreed that we needed to do what was best. On the day of surgery, he proposed a revised plan.
On the 9th, while in pre-op, Dr. Brett and I discussed the surgical plan. He would remove the components today, place the antibiotic spacers, run more tests to be sure I was infection-free, and if all went well I would have the 2nd surgery in about 5 days. All while I stayed in the hospital. I agreed that this was a much better plan and we proceeded.
The first surgery went well. He was able to remove the components and place the antibiotic beads without trouble. I did learn however, afterward, that the anesthesiologist had a difficult time with my airway. I was not surprised, my neck is severely limited and this wasn’t the first time I’d heard this. I did tell him this fact on the pre-op screen, but it was more difficult than he’d planned. So, now officially I have, “A Difficult Airway” going forward. Just great… Another thing to add to the list…
My surgery was a bit delayed, so by the time I was out of post-op and in my room it was evening. I don’t know if my nurse was new or just bad, or both, but it’s really not the sort of thing you want just after surgery. She kept referring to my “shoulder replacement”, would forget things I asked for, and never seemed to be available when I needed her.
And maybe I’m hypercritical or spoiled because for all my other surgeries at this hospital my stepmother was the well-liked and well-respected CNO (Chief Nurse Officer) for the entire hospital system – I was treated very well! She retired last year and still had many friends, but the hospital had recently gone through many changes. I still had a private room and a few of her friends came to check on me – but it didn’t feel the same this time.
Anyway — besides my first nurse being a complete ditz, the hospital didn’t have my main anti-inflammatory medication on formulary and worse yet, an anti-inflammatory wasn’t even listed on my post-op orders. If you’re not familiar – things move very slowly in a hospital. It took many hours before I had my medicine and at the next shift change — I had to go through it all over again! It wasn’t until a few shifts later that they finally got it right!!
If you have a small bladder like me – make sure you get a catheter or bring your own Depends because it takes the nurse or assistant F-O-R-E-V-E-R to come once you press the Call button– If they come at all!
Here I am, drugged up and being pumped full of giant bags of antibiotics (just in case) and medicine intravenously, I’ve got the “sucky-blowy” anti-blood-clot things on my legs, IV in my left arm, giant heavy splint on my right arm with attached drain port to a machine on the floor, and I have to pee every freaking half hour! It sounds comical now, but believe you me, it was anything but funny at the time. Eventually I got the hang of doing it all by myself — I had to — there was no other option!
The food wasn’t too bad, once they got my order right! For the first 2-3 meals I was sent up a tray that I didn’t even order. And I was starving!! Again – someone screwed up! My order had gotten put in the system twice or something screwy like that – anyway – again, it took forever to get that corrected! And speaking of food and eating – do you know not one person – nurse or assistant – offered to help at least cut up my food? I know it sounds petty, but when you have surgery involving your dominant arm/hand/elbow, wouldn’t you think they would make a note and at least offer to help the patient? Again – I managed to figure it out by myself. Of course my food was always cold and kind of gross by the end – but I managed.
About 3 days after the surgery, the splint/bandage began to really hurt and feel as if my circulation was being cut off around my wrist and hand. A PA on the floor was able to loosen the contraption for me and it felt much better for a while.
Oh, I almost forgot to mention, just so you get the full picture here – I was having full blown awful hot flashes during this time — like every hour out of the blue I would be drenched in sweat. They were able to provide me with a small portable fan that I kept on and I had turned down the room temperature really low just so I could survive. Every time someone came in they’d say the same thing, “It’s freezing in here! Are you O.K.?”
Going a Bit Stir Crazy
Between cat-naps, daily blood draws and Heparin shots, gallons of IV fluids, 5 a.m. doctor rounds, and a gazillion bathroom trips, I eventually fell into a bit of a routine while waiting around for my next surgery. My family and friends visited and would bring me real food and Starbucks and I even wore my own comfortable clothes from home. I caught up on a few movies on my IPad and watched the HBO docu-series Chernobyl. (Outstanding, by the way, if you haven’t seen it, please do!) All my results were coming back negative for infection, as I knew they would, and things were looking good for the second surgery.
By this time, I had been painting for two months, at least 3-4 days a week outside of the classroom plus class time. When I paint at home I usually start in the evening and paint into the wee hours of the morning. My right arm— fingers.. hand.. wrist.. elbow.. neck.. shoulder— were all getting very sore. I carry my supplies in a Husky roll-cart which is very light on wheels to pull around. However, once full, it is very heavy for me to lift into/out of trunk (I’m limited to lifting 10 pounds per elbow due to my replacements). I thought I was being careful, but not careful enough.
In mid-November, I noticed a small protruding bump about three inches below my elbow that was painful to the touch. I made an appointment the next day to see my orthopedic surgeon. He confirmed what I suspected; a small fracture of the radius bone. What I was not expecting to hear was that both components of my elbow replacement were loose! Dr. Michael Wiater passed me over to his brother, Dr. Brett Wiater for the revision process; apparently he had more experience in the area. From here on out, Brett would now be my surgeon. I would have to have my elbow redone or “Revised.” Since it wasn’t painful and the fracture would probably heal on its own, we set a surgery date for January 9th, 2020 — my 21st wedding anniversary!
Well, at least it’s something you can use! said my friend when I told her I was getting a new elbow for my anniversary.
Needless to say, I had to leave Nancy’s class and slow down — again. I was very disappointed and depressed. Once again, I felt like my body let me down and fucked me over.
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…
For a few years now my ultimate goal was to turn my passion for painting into a small business. I had a plan in mind of how I would get there:
Practice, practice, practiceCreate LogoPaint, paint, paintBuild WebsitePaint, paint, paintDesign Business CardsPaint, paint, paintStart Selling via commissions and E-commerce
I’m happy to report that much progress has been made toward my plan. However, I am stuck somewhere around Step 6.8. Over the summer I only completed one painting! It’s very difficult to paint with the boys home full-time in the summer. So I turned my creative attention to designing my website and business cards.
I took a couple of classes at the BBAC, one on the Business of Art and the other a one-day Portrait workshop (No, you didn’t miss it – my results were not blog-worthy!) Next week, I am taking a three-day Portrait workshop, hopefully the results will be better and I will post some pics.
The end of summer is always hectic with kids and the beginning of school is crazy. And, on September 21st I am scheduled for an elbow replacement due to my arthritis. Compared to my ankle replacements, it should be a piece of cake. Since I’m starting with the left (my non-dominant side) I should be back to painting after a week or so.
My goal is to paint like the wind October – December and have the e-commerce portion of my website up and running in January 2017.
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 