Recovery notes, 1

This is one of five messy journal pages called Hospital Stays 1 & 2, 2025. I had four major surgeries in 2024 and many hospital stays. Unfortunately, 2025 started with two. I am committed to doing anything possible to avoid any invasive procedures or hospitalizations for the rest of 2025! Let's hope my body cooperates.

At this point, I feel I have significant medical trauma to work through. Medical trauma does not only occur from abusive or inappropriate medical incidences. It also applies to the incredible physical and emotional trauma you go through when you have a major illness and medical intervention for treatment.

While, most of my healthcare providers were wonderful, there were a handful that caused emotional and physical harm. It only takes a few people working 12 hour shifts to impact your hospital experience. But, luckily, these people were few and far between.

An overriding, soul wrenching experience in 2024 was the unbearable PAIN. The pain I was living with on a daily basis had become literally too much to bear. Multiple Percocets a day did not extinguish it, and I was reduced to barely moving at all. I could only be on my feet a couple hours a day and then had to lie flat in pain. I would not wish this on anyone. Along with your loss of daily functioning, you have to deal with unrelenting pain in multiple places in your body. Much of it was nerve pain, which is it's own version of hell.

I don't wanna revisit these terrible times too much in this post. I still live with pain on a daily basis, but it is not as extreme, and I look forward to it disappearing. I am also regaining much of my abilities such as using my dominant hand to write and eat with.  I am also gaining in my ability to be on my feet longer, and I am relearning to walk. I have a year to work on this and I'm hoping for a full recovery. 

I am also going back to some of my rheumatoid arthritis medication. I was off them for five months and boy did I feel it! I am still not cleared for my biologic injections of Enbrel, but I got to start my hydroxychloroquine and sulfasalazine last week. Hopefully the side effects from these medications will pale in comparison to the relief I will get in my many painful joints. I had to be taken off all my RA medication because medication for autoimmune illnesses suppress your immune system and I could not have that while I was undergoing sensitive surgical recoveries.

I feel such gratitude to my spinal neurosurgeons, nurses and anesthesiologists. Dealing with severe spinal compression is so delicate and complex. I am overwhelmed with appreciation for the people that went down this long educational tract to be able to save people like me from paralysis and death. Thank you, thank you, thank you. My neurosurgeons had to go through medical school, then go years for a specialty in neurology, and then had to go years in a specialty of spinal neurosurgery. It is one of the longest physician trainings.

This journal page is messy on purpose. It is chaotic and violent.  "Fall risk "was a label assigned to me in medical settings. This told personnel that I needed their hands on help for everything. I literally had alarms set on my bed and chair, prohibiting the slightest move towards independence. I do understand that this was for my safety. But the hospital definitely aired on the side of caution. As a fall risk, I had to fight with healthcare staff to give  me any privacy. The hospital's fear of liability in case I would fall kept me dependent in ways I did not need. The most private of actions had to be in full view and hands-on with 1 to 3 people. To say that I was impatient and crabby to be left alone is an understatement. The brick walls represent my struggle to breakthrough pain and demoralization to embrace recovery. The fiery colors reference  my pain and blood.

My rehabilitation is difficult.  It is a daily challenge that sees growth in very small increments. And my body is still not 100%. I am chronically anemic, my rheumatoid arthritis is flaring in several joints and my cervical and thoracic regions are still limited in movement and painful. This rehabilitation requires patience, which is a virtue I find lacking. I intuitively know that I must be grateful and hopeful to continue recovering. Cheers to that.

 Here's to a 2025 that is healthier, hospital-free and full of creative projects. Wish me well.

Spinal surgery #2

I am definitely a frequent flyer for hospital stays.  I listen enviously when I hear friends tell me that they've never broken a bone, ever had a surgery or hospital stay. I've had many of the above. So much so, that during this most recent two week stay, I had several nurses that remembered me from previous hospital stays. It was a friendly reunion that I believe got me better bedside service. Sweet.

My doctors suspect that it was my rheumatoid arthritis that degenerated my spine so severely. As you may recall, on September 24, I had emergency cervical spinal surgery because I had serious cervical spinal compression. I was left almost paralyzed. Three months later, in true Deborah fashion, I entered the ER December 26 and ended up with emergency thoracic spinal surgery! 

At the time of my cervical surgery, my neurosurgeons told me that I would need to deal with my thoracic spinal compression 'next'. The MRI showed spinal compression there as well, but the cervical spinal compression was the most important to repair first. Neurosurgeons work from the top down. When the spine is injured, it is most important to repair the cervical first because it nourishes all the vertebrae below it. Then thoracic and then lumbar last.We thought that we had more time to plan treatment for my thoracic T10, T 11, T 12. 

I have been suffering with back pain and inability to walk properly for sometime now. The cervical corpectomy and ACDF helped a lot but it mainly helped my hands. I was still wearing my prescribed neck brace when I showed up December 26 to the emergency room for my right side numbness. 

I had an appointment January 8, 2025 with Dr S, my neurosurgeon, to go over surgical options for my thoracic spine; but I began losing more basic abilities at an accelerated rate in December, 2024. By December 23, the right side of my body from my mid back down was experiencing occasional numbness that would last for 20 minutes and then be OK. And my right leg would buckle with no notice. I contacted Dr S and his team  and they moved up my appointment to December 27.

I wanted to get through Noche Buena (December 24th) and Christmas at home. I had been in close contact with Dr S's physician assistant (PA) by phone.  He told me not to white knuckle it, trying to make it to my appointment on December 27. With any new symptoms I was to go to ER immediately. He agreed with me that pretty much the ER would just stabilize and keep me in observation until I saw neurosurgeons on the 26th. I planned to go to the ER early the 26th, as my right side numbness was extending into my groin area and was more constant

Upon entering the ER, I was immediately admitted to the hospital. I saw Dr S's PA and spoke with Dr S on the 27th. They were scheduling me for surgery the following day. It was a Saturday, so I was the only operation happening that day. It was weird to be wheeled into an OR so empty as many physicians were on holiday. My anesthesiologist had to serve as surgical assist (instead of the Neurosurgeon Fellow).

Dr S told me that this was a "major, major surgery". The spinal compression was so extensive that instead of a 1 - 2 inch scar; I ended up with a 6 inch incision. I awoke with a wound VAC and two drains. I had a complication, called a dorsal dural bleb. As far as surgical complications go, I think having a "bleb" is so funny as that name conjures up a friendly, colorful, cartoon character. This is what I think a 'bleb' looks like.

Post op recovery was extremely painful, and despite having had numerous major operations, this was the first time I actually hallucinated. I told my nurse about it and she said "oh, that's the Dilaudid you were given post op that mixed with the anesthesia that was still in your system.”

My hallucination was innocuous and kind of funny. To understand it in context, I have to tell you its backstory. 9 hours earlier, my friend , DL, was trying to alleviate my pre-op anxiety and was talking about a cheesecake recipe he wanted to try.  It was called orange cheesecake dump pie. It contains orange cake mix, two packages of cream cheese and piecrust, among other things. I said firmly "No way, anything with 'dump' in the title sounds yucky!" Now, I often shoot down DL's proposed dishes because he has a way more adventurous palate than me. Also, he eats healthier and chooses ingredients that I do not think taste good. This eating difference has been a source of hurt feelings for him and frustration for me.  So he playfully teased me about not being open to new foods. When I was being wheeled into surgery and we had to say goodbye,  I looked at him and said "Hey D, make the dump pie. I'll eat a slice." He looked at me and said "Aw, you do love me" and I gave him a full face smile. We had a moment. Nice memory.

So my first post-op night in the hospital, I was semi conscious in my hospital bed, when I repeatedly heard a woman saying "$27, 27$!" Painfully, I raised the head of my bed, and lo and behold, I see a woman sitting near my feet. She had lime green light emanating out of her. Kool. . . And she was talking to someone that wasn't there. She was very angry with the cheesecake she had paid $27 for.  I told her that I thought she had gotten what is called a dump cheesecake pie, but she could not hear me. She was on an endless loop saying and doing the same thing.  I was in so much pain and loopy that I went back to sleep. That was an added perk to my hospital stay.

I was in the hospital for two weeks and I want to give a shout out to all the wonderful healthcare providers that helped me. Much appreciation to the dedicated nurses and techs of three tower two. I was thrilled that one of the PAs to my Neurosurgeon was a young black woman and I told her that I was proud of her for being a young woman of color in such a demanding, male dominated field. She appreciated it. My two surgeons were men of color, and I'm sure I had transference of my father.

Of course there were a few healthcare workers that I felt should retire. They were jaded, exuded indifference, and brought in a black cloud every time they were in my room. But they were the minority.

This story about my second spinal surgery is pretty cut and dry. But know that the emotional challenges that brought me to this point, and that I am now facing, were and are profound. I feel I do not have the words to describe how I felt slowly losing the ability to use my hands and to move and walk. Not to mention the misery of constant pain.

The chronic back and leg pain started close to four years ago and got worse to where it was unbearable all 2024. My invisible spinal deterioration began to manifest outwardly visible in the last two years.  Although living with chronic  24/7pain was the worst; dealing with living in a disabled body was a close second. I now have a long neurological rehab in order for me to regain as much of my abilities as I can. The road ahead is going to be fraught with other emotional ups and downs. No doubt I will write more about this later.

But for now, I am entering 2025 hopeful. Send me your good vibes.

Ouch

 

I have an appointment with my pain doctor this morning. After that, I have my infusion therapy. Ever since the awareness of opioid addiction swept the medical field, it has been very difficult to get pain medications for non addicts experiencing real pain. Ugh! The refrain I hear from my rheumatologist and other doctors is "I am not a pain doctor. See a pain doctor" whenever I ask for pain medication. Even for Tylenol with codeine. Even in the emergency room upon discharge. You go from dilaudid and morphine in the hospital to, if you are lucky, six tramadol upon discharge. When the condition has not been resolved!

I have severe pain in so many joints and throughout my GI tract (RA can affect organ systems too) that I have difficulty walking, holding a mug of coffee in morning, sleeping, eating and just being able to work a half day or shop for groceries. Not to even mention laundry or cleaning. Constant pain is awful and leads to depression and hopelessness. It is very isolating because you cannot participate in life with others. I cannot work now. 

My latest new pain came with a right shoulder rotator cuff tear from lifting a full carton of almond milk from my top shelf in refrigerator. YES!! I tore my rotator from lifting a carton of milk. RA is wreaking havoc on my shoulders and the whole joints are affected and predisposed to rotator cuff injury. Now, I cannot lift or use my right arm. Cannot carry any weight while lifting arm outward and do not have full range of motion. My insurance denied the necessary treatment.  So I am just left with a gimpy arm. My other shoulder had three partial rotator cuff tears and and I had to shell out-of-pocket $1200 for two PRP injections (which greatly helped) and had cortisone. It still hurts but is way better. Now my right shoulder. But no pain medication. Just heat and cold, rest and Tylenol. It throbs with stabbing pain all day. My fingers are numb. This new pain is added to my  daily pain in spine, neck, knee, hands. So I am eager to see my pain doctor today. 

Dr K, my pain guy, specializes in spines. I have gotten relief from terrible cervical nerve pain with two epidurals and we will address lower back nerve pain upon insurance authorization. Since I had to be taken off my DMARD methotrexate due to risk of intestinal perforation (I was SO sick for 6 weeks) , my RA flares have fully blossomed. I am now starting on biologic Enbrel. But the affordability of that medicine is a problem. With assistance and insurance, my co-pay is over $1800 a month for four injections! See separate posts about US laws that let pharmaceuticals patent life saving medications, resulting in diabetics and other illness patients not able to afford their life saving medication!!

When I see my pain doctor, I have to be drug tested each visit to ensure I am not overusing or doing drug no-nos. You are treated like an addict. The medical mantra is that pain management does not take away all your pain but rather the aim is to "help". They do not even aim to take it away. They will not prescribe potent painkillers ongoing. Each month I try to get  12-21 Tylenol with codeine. It is not enough at all but I dole them out with care and try to make it last for that month. It is like squeezing blood from a rock, lol. Frankly, I am at the point in my life that I do not even care if I become a functional pain med addict as long as I can resume some basic life activities. Really. But no, they won't let you. So, I am off to see Dr K and do our dance. I appreciate him and need him. 

I hate posting downers and complaining posts. But I need support and want to hear from or reach other chronic pain sufferers and our/my supporters. I know that most people are ignorant about chronic illnesses and RA in particular and we are invisible sufferers. So much change needs to happen for healthcare accessibility. Capitalist profits-over-people business model has hijacked the insurance, pharmaceutical and hospital systems. Good doctors cannot provide the care they know their patients need. 

I publicize my predicament to put a face to this political travesty. It is not a sexy issue like war and climate change, but it affects such a huge swath of people across the country and we are literally dying from greed. I urge activists to take on healthcare accessibility issues and I urge friends and loved ones to not turn a blind eye to the needs and predicament of their friends and comrades.

Keep your mind and spirit strong

This was a hard week physically: RA pain all over and intestinal issues. RA is an inflammatory autoimmune illness that primarily affects joints but also it affects your organ systems. Aside from deteriorated joints, my RA has manifested in inflammatory bowel disease. I have perforated my intestines several times, many hospitals stays and had two colon resections. So when I get a diverticulitis flare, I am scared. I am back on oral antibiotics for this diverticulitis attack but doctor said I may need to be hospitalized for IV antibiotic treatment (which I have had to do several times). Keeping my fingers crossed.

I am struggling with feeling sorry for myself. I have to stop my methotrexate while I heal but that just means more pain etc. Also, I am a vain grrl; so I hate that my hands/wrist are showing RA nodules and swollen joints. My hands are so pained and stiff in the morning, it is hard to carry a mug of coffee or write until they are warmed up. Then, they just ache and hurt the rest of the day. Hard to hold cell phone for more than a minute. The RA in my spine has me now getting epidurals for pain management and I have gotten cortisone injections in both hands, shoulders and knee. And PRP in my shoulders and knees. All these interventions hurt! But they give me some relief, however fleeting. I try to remain hopeful for  remission someday. But hard to stay positive when I have several health things hitting at once.

BUT,  then I remember how the fabulous Frida Kahlo continued painting and creating while bed ridden with severe pain and illness. And I think of Pierre-Auguste Renoir, French impressionist, who painted 400 canvases after he was diagnosed with RA. He became wheelchair bound and designed and developed a device that he attached to his hands just so that he could hold a paintbrush.

So, toughen up buttercup. And think positively. I remind myself to reframe my experiences and keep hope alive. And I remind myself to be grateful for all the blessing I do have. That's it, all I have to say on the matter. Thanks for listening.