One year recovery anniversary through lens of my art journal

September 19th is the one year anniversary of my emergency hospitalization for cervical myelopathy that resulted in cervical surgery (corpectomy and fusions). Three months after that on December 27th, I again had an emergency hospitalization and that resulted in thoracic spinal sugery (T9-12)

You see, my entire spine has sustained a lot of damage over time; to the point that the spinal compression was severe enough for paralysis and fatality. I ended up having two complicated neurosugeries  (cervical and thoracic) over three months. 

I am coming up on my one year anniversary of my first emergency hospitalization/surgery. I want to share with you two different art journal entries I created this year about my recoveries. To hear a much more detailed story with visuals, check out my You Tube video here. 

This first page was made five months post op from my cervical surgery. As you can see, I felt stuck, angry and sad. This was most optimistic page I created at that time. I tried to envision hope with the yellow at top. But falling over and pain were paramount in my mind. The overall sense in this piece is being unable to break through brick walls, tears, pain and not being able to walk or balance. I felt defeated.

In the second art journal spread, I focussed on the physical realm and the emotional realms. 

Having been to hell and back in both those worlds, I have adopted the phoenix as a special animal symbol for myself. Legend has it that the phoenix re-births itself after being consumed by fire. 

Yes. She swooped up beside me and I felt the wisps of flames licking my skin as she flew by.

You still see tears but I am now releasing some emotional tears (blue), not just the red ones of pain and fury. I incorporated butterflies for transformation and drew on the wisdom of my ancestors through the High Priestess tarot card. 

I only used paper that I had drawn on, painted, stamped or altered in some way. I like working in layers. Can you spot the three hospital bands in each art journal piece? They are white, red and yellow. They were color copies of the actual bands I wore for a month. You can find the white band in the video.  This photo cropped it out.

There is so much to say about this first year of recovery. It is like an onion. But what I take away is resilience, acceptance and yet, still I hold onto hope. And maybe one more . . . gratitude. Yes, I'll leave it at that.

Disabilities SD 480p

How I live with my disabilities.

Hard won improvements: hands edition

 

This is a happy post. As some of you may have already read in past posts, the last two years have been very difficult for me. I have an autoimmune illness (rheumatoid arthritis) that has attacked my body in so many different ways. I believe it has attacked my gastrointestinal system. It has attacked all my joints, and it has wreaked terrible havoc on my spine. At least that is what my neurosurgeons speculate happened to my spine.*

In August of 2023, the pain in my back (and other places)  became so great that I was not able to work anymore. It was difficult to just be out of bed and walk. At the same time, my hands started becoming painfully, numb and lost dexterity. I went to three doctors trying to figure out why I was losing my balance and why I could not even hold eating utensils or a pen. I was misdiagnosed as simply having carpal tunnel. And the rest of my difficulties were chalked up to the effects of rheumatoid arthritis. Never mind, the fact that my rheumatologist was telling me that these symptoms of loss of balance and inability to control my foot placement was not an effect of RA.

Long story short, upon my third doctor and a second opinion by a neurologist, a full spinal MRI was ordered. That neurologist reached out to me the moment she saw the results and told me to head to the ER immediately, I had such severe spinal compression that I was close to paralysis. By that time, I was already using a walker and I could not use my hands for anything. I was totally dependent on an aide for all daily activities. I had an emergency corpectomy and cervical fusions in my neck on September 24, 2024. I ended up in a neck brace for 3 1/2 months post-op.

The day after this intensive surgery, I felt relief from the neuropathy in my hands. While I still suffer with it in my left hand, it is a far cry from the debilitating and agonizing burning pain I had been feeling in my hands 24/7. The crushing sensation I felt up my arms would dissipate over the next couple months. When I realize how close I was to paralysis from the neck down, I thank God and all my angels.

I have been doing physical therapy for over a year and while I am an impatient person, I am seeing great results. They may be subtle to the outside viewer looking in at me; but for me, I feel them as big steps. The biggest improvement has been my right hand, regaining much control. I do believe this was a blessing from God. I remember talking with my chief neurosurgeons before surgery and telling him that if they had to choose between saving my hands or my legs, to please save my hands. Not being able to write, dress myself and most importantly not being able to make art had robbed so much joy from my life. And the pain! Wow. I would make do with mobility aids if I could have my hands back and as I write this, I am happy to report my dominant hand is now about 90% healed ;my left hand not so much. But I'll take it.

Five months after my cervical surgery (February 2025), I sat at my art table and tried to paint some basic designs. This was the result . I

could not even draw lines well; I could not paint clean curves. My brushstrokes were visibly shaky. I was disgusted with myself and so utterly sad that I stopped sitting at my art table for months. Lots of tears. 

Three months later and eight months post op from cervical decompression, I again tried this same exercise. I am delighted. I doodled the image at the top of this post. My lines are more confident, controlled and solid. While my right hand is still a little shaky with fine lines. I am thrilled to be this improved. And grateful.

I now sit at my art table at least 5 days a week and I am enjoying my creativity again. I need to remember this improvement when I lose patience, especially around walking.

My emergency thoracic spinal decompression on December 28, 2024 stopped an impending paralysis as well, just lower in my body. I have not regained the ability to walk unassisted yet. I worry I'll never walk by myself again. But I need to remember these two drawings and know that with patience and hard work, I will improve. Or at least I'll be better, if not totally, ambulatory.

While I am frustrated about not being able to walk unassisted, I have to remember that I got my wish. I remember urgently telling the Neurosurgeon to save my hands and that is what has happened. If I am able to walk unassisted in the future, it will just be the icing on the cake. But I do hope to have a happy post like this one around my walking  abilities in the future.

*Since this post is about my hand recovery, I will not go into the thoracic spinal decompression surgery that I had December 28, 2024.

News from the front, with Bimi, cat activist

 

Yesterday, my friend, DL, went to a May Day rally in Coral Springs. Unfortunately, the SURJ group he was meeting up with (to walk to the main rally together) was nowhere to be found. Very odd. SURJ organizers are known to be responsible. Not sure what happened there.

But the take away for me was sitting (pun intended) with my feelings of "less than" again. Due to my autoimmune illness, rheumatoid arthritis, I live with constant pain and am currently disabled, using a walker and wheelchair. (That may change in the future. If I have anything to do about it that will change!) Getting out is a bit challenging for me. It depends on my pain level that day and time. I also need to research whether places I want to go to are walker and wheelchair accessible. Gone are the days of committing to activities in advance and always being able to maneuver the locales and actions. And that makes me sad. It makes me feel left out. And in these political times, I really want to be part of community organizing.

While I am well aware that I need to take ownership of my life as it is and seek out ways I can be involved; I still felt left out. And then it hit me. I could send a proxy to events I am not up for. And who else could represent me but my trusted feline daughter, Bimini.  She is feisty and very vocal - as all guests who visit my home remark. She talks a lot and has a dramatic presentation. 

Bim accepted this job and will be reporting from the field on meetings, rallies, marches, etc. Yeah, this will be fun. Stay tuned.

 

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.

Loving support

Lately, I have been struggling with more physical challenges. I am going to more specialists for answers. There is a question as to whether my additional symptoms are just advanced  RA or some other thing, like multiple sclerosis. It is not uncommon when you have one  autoimmune illness to get another auto immune illness.

Throughout this difficult time, I have gotten support from some of my ride-or-die friends, as well as my beloved sisters. This has meant the world to me. Through regular check-ins, I inform as well as metaphorically cry on shoulders. It is hard for me to let others see me so down, but they have shown that they can hold it safely. I am so lucky.

Of course, conversation and hugs offer the most emotional support. And I do not take for granted the physical labor TDH gives me when he fixes things, put things together, unload things and just helps me out in general. But, this month, I have also been blessed with unsolicited financial gifts to help me! 

I can no longer navigate my stairs without tremendous pain and I have gotten stranded twice on the staircase, unable to go up or down. That was the wake up call I needed to realize that the time had come for a chair stair lift. I bit the bullet financially, and ordered the lovely lady pictured here.

I told my girl friend CW about it and lo and behold, I opened an email telling me I had received a financial gift to be used toward the purchase of my chair. The memo in her Venmo transaction stated something to the effect of 'friends help friends'. My heart swelled. I  have to think of a name for my stair chair and I will keep CW in mind with the name I choose. I suspect some of you may know of whom I speak, so fun suggestions welcome.

Aside from stairs, I have also been having difficulty going places with my cane/walker for any sustained period of time.  I need to sit down fairly quickly due to pain and weakness.

So I have also been looking for travel wheelchairs that can load in and out of my car easily. With that I would be able to go out for strolls, walking along the boardwalk, visiting farmers markets, etc. 

I had been looking for cheap, used ones, but none of them were suitable. I went to a medical supply store and was comparing the different types of wheelchairs. I called my sister for advice on the two that I was considering, but was worried about the big expenditure, I really only intended her opinion on which one to get when all of the sudden my sweet sis M stated firmly "I will buy it. Get the nicer one."As it was so expensive, I was left speechless. I still get teary thinking of this generous gesture.

And for the cherry on top, this month, saw me getting a surprise gift in the mail.

Rheumatoid arthritis leaves me especially pained and stiff in the mornings. I rarely make morning plans with others because it takes a couple hours after waking for my hands to start working better. I often have difficulty using a standard coffee mug for my morning Java because my stiff, uncoordinated fingers cause me to spill things frequently. I have looked into kitchen aides for people with limited mobility. And they are horrible looking; someone can make a fortune if they produced trendy mobility aides. I have been resistant to get the institutional-looking double handled mugs that people with hand issues use. I do not want to feel I'm in an institution. And lo and behold, my dear DL searched and found a beautiful, handmade artisan double handed mug for me. I love drinking out of this every morning. It helps so much in a concrete way as well as in an emotional way.

In these trying times when I often find myself feeling low, I have to remember how loved I am and how special people in my life have made me feel. I am so grateful and love so much my dear friends and my sisters. Their generous and loving gifts for my physical comfort, help me live better with my autoimmune illness. My angels are at work all around me and some of them come in human form.

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.

My RA story

Note: This post goes in some detail about my RA journey. It may only resonate with other chronic illness sufferers. But, if you love someone with an autoimmune illness, I encourage you to read my story and familiarize yourself with autoimmune illnesses. My particular autoimmune illness is rheumatoid arthritis. Autoimmune diseases are so isolating to patients. So much ignorance and misunderstanding. Most people think RA is just achey joints. But RA is debilitating and affects your entire body with inflammation - even your organ systems.

Right now, I coming out of an RA flare. A flare is when your RA becomes very active and produces severe symptoms. Yes, even though I take a light chemotherapy cocktail of drugs to treat my RA, I still get flares and have the additional burden of the nasty side effects of the medication. Since rheumatoid arthritis is a disease in which your own immune system attacks your own body, the treatment involves drugs that stop my body from doing this. These are the same drugs that are used in chemotherapy to get cancer cells to stop replicating.Terrible side effects. But, these drugs have given me back my life and it still a better quality of life with them. Here is my coming-out RA story.

Early RA symptoms are lighter than more advanced RA, so much so that I lived with RA for many years before my official diagnosis in 2022. In truth, I had been plagued with fatigue, low grade fever and gastrointestinal issues since my college days. But I just dealt with it. It would not be until 2022 that I learned that much of my GI issues were either exacerbated or directly caused by RA and it is probably the reason I am so susceptible to diverticulitis, colitis and IBS.  But I treated all my GI issues as isolated issues and developed very familiar relationship with my gastroenterologist since college and my colo-rectal surgeon since 2011.

In my 30's and 40's, I noticed that I was fatigued a lot and had bad knee pain but I chalked that up to me just being a sleepy head and arthritic from sports injuries. I started with steroid injections in my knees. In yearly 50's, my hands started to bother me. Pain and stiffness, especially in mornings. In 2015, I finally went to an orthopedic doctor about my hands and started with cortisone shots in my worst fingers: thumbs and middle fingers. I developed two trigger fingers. Important to note that most RA patients first notice the joint pain in their hands and/or feet.

In 2021, I had my second colon resection due to perforated diverticulitis. And within a matter of months, my left knee blew out all on its own. I was not doing anything special when it just gave way and I was left in excruciating pain and unable to put any weight or walk on that leg. It had finally given up the ghost and could not be brought back to any functionality. So I ended up with a total knee replacement months after my second colon resection. 

I was very sick and had become immunocompromised from the strains my body. Doctors kept wondering why I was so easily sick and had difficulty healing from things. Both surgeries resulted in incision infections and developed complications. My health never bounced back after the second colon resection and the knee replacement pushed me over an edge. I became very sick. I had extreme pain all over my body (standing and walking was difficult), ongoing daily fevers over 100 and severe exhaustion all the time. I was not able to work full time anymore; I struggled to even work part time. And I was scared. Because I knew something was wrong.

In 2021, my symptoms became debilitating and I started a two year process of bouncing around from doctor to doctor, alternative therapies and self help treatments. I went to internists, orthopedic physicians, infectious disease specialist, as well as acupuncture and chiropractic doctors. I sought second opinions and finally in 2022 I was referred to a rheumatology specialist. 

Halleluja! After a long and thorough medical history and review of all my different issues and surgeries, he felt certain I had an autoimmune disease and he set about testing for what type. He treated my immediate symptoms with oral steroids, Celebrex (anti inflammatory) and reassured me that he was going too help me. I cried in his office that day. 

Sure enough, detailed testing showed I had rheumatoid arthritis And my blood work showed so much inflammation and other bad things that he started me immediately on methotrexate injections and hydroxychoriquin and folic acid. I had several hurdles to clear before I started these meds because they are so potent that I need clearances from two different doctors stating I was healthy enough to be on them. But I finally started my RA treatments in April 2023.

I was SO excited to start my new meds but I soon realized the treatment was a double edged sword. Yes, my daily fever disappeared! My pain improved by 70% and my fatigue was lessened! I was able to work part time and was able to stand and walk without excruciating pain and a cane. I had hope fore a recovery. RA is not curable but with right drug therapy, my doctor thought I could get up to 90% improvement. I was so happy. Of course the other shoe had to drop. I was severely nauseated by the methotrexate. Vomiting and diarrhea. I got a medical marijuana license and started with CBD tinctures for the nausea, it helps a little. 

My drugs are in a class called DMARDS (disease modifying antirheumatic drugs). They are commonly used for cancer chemotherapy. Just as they stop cancer cells from replicating, they stop my immune system from attacking my own body. But the trade off is that they compromise your immune system in the process. It makes me even more immunocompromised and I get sick easily and have hard time getting over things.

I was willing to tolerate the side effects but they started getting severe. Several embarrassing drastic GI crisis' and a four day stay in the hospital for severe abdominal pain and distress caused my gastroenterologist to recommend reevaluating whether I could continue with methotrexate. I still fought to stay on it. But I had also started getting so many different types low grade infections that did not respond too treatment. Ongoing gynecologic infections, colds, ear infections, etc. They kept coming back to back. My gynecologist wanted to put me on a six month course of medication to treat resistant yeast infections but needed a clearance from my rheumatologist because that drug harms your liver and methotrexate does also. My rheumatologist refused to give clearance. He said I could not continue with methotrexate as my immunity was too low.  And it is too bad as that drug is the best for RA relief. The side effects were just too hard for my body.

I was very, very disappointed. He then put me on Leflunomide and hydroxychloroquin. That combo has less harsh side effects but it is also less effective in treating RA symptoms. I have been on that combo for a month. While, I am hopeful that it will work better over several months, I am sad that it has not eradicated my RA symptoms as much. I do not have the DAILY fevers and excruciating pain to stand or walk. And I am not so fatigued all the time. But I still have moderate too severe pain in joints and need to nap many days. And I get flares with fever and terrible pain and have to stay in bed sometimes. So much so that I now see a pain doctor who is offering injections in my cervical and lumber joints and I get cortizone shots in my hands and shoulder. I have also added PRP treatments for my shoulder.

And that brings me to today. I am on my DMARD medications. I hope to incorporate biologics if and when it becomes covered my insurance. Part of my impetus for writing this blog is to share about living with RA and to possibly hear back from others with chronic illness about their lives.

Also, just to have a space to share about my struggles and experiences with this illness. And if it educates anyone, that is good too!