Just call me "Share a Smile, Becky"

In 1997, Mattel released a Barbie in a wheelchair called Share a Smile, Becky. This was seven years after the passage of the Americans with Disability Act (ADA). A girl with cerebral palsy wrote Mattel when she realized that the Share a Smile Becky would not fit in Barbi’s Dreamhouse elevator. Instead of redesigning the Dreamhouse, Mattel discontinued the doll.

I share this because I had a Share a Smile Becky experience last week.

For the holidays, I wanted to share fun holiday experiences with close friends. With one I went to a Board and Brush event and made this Victorian Christmas tray. And for another, I bought tickets to a holiday event at the Bonnet House. This historical home in Fort Lauderdale was built around 1900. The man who built it was a rich artist eccentric in the early 20th century. This house was decorated fabulously for the holidays and every night of the week featured wonderful performances and decorations and liquor for an evening. I chose to buy tickets for a wonderful evening of jazz and champagne, plus a walking tour of the home.

Knowing I would be on my feet walking for hours, I knew I would need my wheelchair that evening. I contacted the event organizer and asked if the home was wheelchair accessible. She told me that it was, but that the parking lot was not. I made arrangements for a tram to pick me up in the parking lot. So it was all set and it was a surprise treat for my friend.

We get to the event and indeed the tram was fine; although it felt like I was on Mr. Toad's Wild Ride from Disney World. After loading my wheelchair, we were seated in the back of a deluxe golf cart, and the driver went so fast that my glasses actually flew off my face! I painfully felt every pothole and dip in the one and a half mile trek to the home. The ride back to my car was much better.

Life has a way to humble you; and I had to draw on my sense of humor to enjoy the evening because  I had purchased tickets to the wrong night.  I thought I bought an evening of jazz and champagne. But it was actually an evening with an Elvis impersonator and Old Fashioneds. Wow, what a difference; luckily my friend knew lots of Elvis songs and was having a fun time with it.

So I get to the first room to walk through and I realize it is not wheelchair accessible. I'm a little annoyed that I can't see this room but I move on. My friend was able to enjoy all the rooms. I could not wheel into room one, room two, room three. This historic home was not wheelchair accessible! 

I made a video in front the fourth room that I could not enter. 

All the rooms have a large concrete step and a wooden beam to maneuver to enter and exit. Just then, a staff person overhears me while I am recording and comes to me saying 'oh don't worry I will call maintenance and get the ramp'. After a very loud metal ramp is laid down and a lot of people are not able to enter the room and creating a bottleneck around me, she smiles and tells me now I can enter. But the ramp does not clear the entrance and I am still not able to get in.

At that point, she says they will carry me into the room, bring my wheelchair and carry me out. No way am I up for being a further spectacle. I said "no thank you, I do not want to be carried" She kept insisting and badgering me and now there's a large circle of other attendees trying to get into the room and wondering what the holdup is. I felt very exposed and vulnerable and at one point I have to just say "please leave me alone! I do not want to be carried. I will just make do."

What I was able to maneuver was the courtyard surrounding the entrances to the rooms. They were decorated with wonderfully crafted wreaths and garland donated by design firms in the community as well as artists. Luckily, there was one room that did not have a stair, nor a beam and I was able to go into it. Yay! It was the artist's studio! Exactly the room I wanted to see most. As a painter, I love seeing how others work in their studios and this was no disappointment. 100+ years later and I'm looking at the artist's palettes, drawings and paintings. The docents were full of wonderful anecdotes. 

By then I was on my second old-fashioned and being a cheap drunk, I was feeling good. My friend roamed the house and I was parked, talking to the staff, and having a good time now. I made it work. But I left with a feeling of being left out, especially when I was assured the home was wheelchair accessible. 27 years after Share a Smile Becky and I am also not able to visit this dream house.

I do not think the event organizer meant to lie to me. But it is absolutely not OK that I was expected to call maintenance for every room and have that person bring a metal ramp. And the worst error was that the ramp was not even put in place beforehand to see if it cleared the doorway. It did not.

If someone has to call for help to enter a room, then it is not accessible. Accessible would mean every room would have a ramp, installed permanently, that allowed a wheelchair to easily enter and leave.

I plan on writing the organizer and sharing my bad experience as well as what I enjoyed about the evening. I do not want my money back. I know how hard it is for nonprofits and I want these old historic homes to thrive with attendance. Just do better.

Presenté!

 

I am happy to announce that my "We Won't Go Back" small painting is now permanently displayed in a Miami Planned Parenthood reception area. I specifically asked that it reside in a center that has a large Latina population. It is hanging in the Golden Glades Health Center.

Seeing how small it is on those large empty walls, I wish I had done a much larger piece.

Planned Parenthood is one of the nation’s leading providers of affordable health care, and the nation’s largest provider of sex education. With or without insurance, you can always get services from them. 

Despite Trump's win, we can take pride knowing that millions of people turned out in support of abortion access. Now, more than ever, we need to keep our grassroots efforts strong. We need to support our organizations that represent our interests in their services, outreach and education. Please, consider donating to Planned Parenthood so that they can continue their work in ensuring reproductive freedom and justice.

Despite Trump's winThis loss doesn’t change the fact that millions of This loss doesn’t change the fact that millions of Americans turned out to support abortion access and reproductive rights champions.Americans turned out to support abortion access and reproductive rights champions. 

We know we are the majority, and we aren’t going anywhere.

This loss doesn’t change the fact that millions of Americans turned out to support abortion access and reproductive rights champions. 

We know we are the majority, and we aren’t going anywhere.

Throat chakra healing

This beautiful painting is by the artist, Rakia. She titled it "Open and Flow" and it refers to the throat chakra. That chakra is located in the center of the neck. In Eastern traditions, the throat chakra is associated with expression, creativity and speaking one's  truth. 

I am going through tremendous healing in my throat chakra right now. I have had healing spurts at different times in my life relating to opening up my throat chakra.

As a child, I used to have a recurring nightmare in which I was choking and could not breathe. It was not until my 20s that I finally dreamt about unblocking what was in my throat. In that dream, it started off as the usual nightmare in which I'm choking and clutching at my throat. When, to my horror, I started coughing up and vomiting all sorts of things like black spiders, crabs and slippery eels. It was disgusting. And then the dream ended abruptly. I easily interpreted it to be about me speaking my truth as a young lesbian and my activism. Little did I know that this cleaning out of my throat chakra blockages would take many years, decades even. But that was a good start. I've had other growth spurts, but none other so dramatic as the one I had this year with my cervical spinal decompression surgery.

This unflattering picture (what I do for a blog posts!) shows the trauma I've been enduring around my throat chakra. It culminated in the last several months. My cervical vertebrae were so damaged that they had compressed my spinal cord to the point of spinal damage. I had to have an urgent surgery in which they completely removed my C4 and replaced it with titanium, and then also had two cervical fusions.The surgeon went through the front of my throat to reach my vertebrae. The scar lies directly over my throat chakra! Poor baby.

Now, I am not saying that my spinal compression in my neck is due solely to not being able to express myself, but I do believe chronic trauma to energy centers in our body can contribute to illness in those areas. I believe my throat chakra has been blocked due to years of verbal abuse, constant criticism and silencing. I do not tolerate any of that in my life anymore.

I am using daily visualizations to gently wash away psychic debris throughout my whole body, but especially in my throat and neck area. And I am taking concrete steps to speak my truths and express myself.

Some of the healing involves speaking my truth when it's uncomfortable. This morning I broke through my fear of rejection to let a couple people I love dearly know how they had hurt me this past week. I was very afraid of their potential reactions but I felt I needed to say something. It was an overall positive step in my relationship with them. I hope they feel similarly. And while some parts of it were hard, I feel good about how it was left. 

I don't expect I'll ever reach a day when I have nothing to work on in myself. But it's such a good feeling to continue to grow and evolve in ways that leave me and my community more at peace.

 

Squiggly lines

 

I have not painted in months. The last thing I painted was a simple design. As you can see from this photo, my hands were not able to hold the brush with any authority and I was not able to make smooth lines or circles. When I saw this, I was so devastated for my lack of physical abilities. I put away my brush for several months.

My sister, M, and my friend S, gave me great advice: Accept where I am right now with my abilities and make that part of my creative expression. Create a new style of art that incorporates my squiggly lines.  It was affirming and brilliant, but I find it hard to get on board with it. Sigh.

Fast-forward several months and I am one and a half months post cervical spinal surgery. While I am dealing with a possible surgical complication, I have great improvement in my hand, dexterity and grip with my right hand. My left hand is still suffering with burning neuropathy and numbness, but since I am right handed, I am happy to report that the decrease in symptoms has allowed me to pick up a brush again.

I wanted to start with something not too challenging so I decided to design my own pumpkin for Halloween. I chose to create floating circles and on another one, floating shapes. My hands are still not totally normal in their dexterity, but I was able to draw pretty good circles with my right hand! I am thrilled.

I still have neuropathy, especially harsh in my left hand, and I do not know if that will ever go away. So my lines still are not as smooth as before. But I will work on accepting my art as a reflection of me as I am. My evolving artistic style may still incorporate squiggly lines . 

What is your version of squiggly lines?  Here's to everyone that has to accept less than perfect things about themselves.

Secret admirers and allies

I had a lovely surprise last night. My housemate, DL, answered an evening door knock, thinking it was a trick-or-treater. A nervous young woman handed him a note and said she was going to leave it on our car window, but decided to hand it to us in person. She wanted to thank us for our yard sign and flag, which were both supporting womens and abortion rights and Yes on 4 (a Florida prop on the ballot that would repeal the abortion ban throughout all of Florida).

I usually have one of 3 yard flags in front of my house (a free Palestine flag, an overall progressive flag, and an women's/abortion rights flag) For election time I have focused on women's rights and reproductive justice so I have my pink flag and a yes on four  yard sign.

Apparently, abortion rights is dear to her heart. I wonder if she feels the same way around free Palestine and other progressive issues. 

I plan to drop off a fun note and try to establish a neighborhood friend. It was fun to get a shout out from a neighbor. Presenté! 

To the Black and Latino men in my life

If you know me, you know that I am politically engaged with a  progressive agenda (check out the young me from my college days, lol). No doubt you have heard me extol the dangers of another Trump presidency. I know you may be disgusted with politics and think both sides are lying and full of shit, but I am making a special appeal to you to listen to me now. If you love me as a woman, as Latina, as someone who has always worked to make this country a more fair democracy, please hear me out.

Trump is counting on his machismo to appeal to men of color. He is trying to split black and Latino communities along gender lines. Everyone knows the best predictor of future behavior is past behavior. His abysmal history of harming communities of color, his project 2025 or his position on reproductive freedom that would be dangerous for your daughters, your sisters and all women you love are all just the tip of a repressive iceberg.

His macho posturing and reputation for "getting things done" (however illegal or morally reprehensible), is appealing to many black and brown men. And sadly, plain old sexism within black and brown communities is causing some men to vote for Trump simply because he is a male. 

I want to make a special appeal to friends of mine who are disillusioned with politics and tell me they do not plan to vote. To you, I want to clarify one thing. Casting a vote for one candidate is not sending them a valentine. It is not a love note to that candidate nor does it represent your total support of their platform. Voting for a candidate is simply a strategic chess move to reduce the harms to our communities of color, as well as our country.

Please, vote for Kamala Harris. She is not good on everything but she does represent a better agenda for all  Americans. Show your support for the first woman of color running for president on a democratic platform. 

I am signing off today by declaring "I am Puerto Rico".

Breaking up with your doctor: my dear John letter

My previous two posts detail a harrowing medical emergency. I mentioned how previous doctors dismissed my symptoms and if it had not been for my own personal tenacity, I would've ended up paralyzed or worse.

This is not the first time that I have experienced such medical dismissiveness. I realize that this medical gaslighting did not start happening until I became an older woman. See this past post. (And yes, I do acknowledge that I seem to often have medical emergencies. What can I say? I live with an auto immune illness that wreaks havoc on my body).

I remember when my mother had lung cancer and she kept getting misdiagnosed as having allergies or suffering the effects of a chest impact from a mild car accident. I kept taking her to emergency rooms and physicians for chest pain. Once when we were leaving an ER without any medication or referral, my mother turned to me and said "they just see me as an old immigrant woman; that is why they don't take me serious". She was right; and by the time they made the cancer diagnosis, it was beyond hope and she had suffered tremendous pain needlessly for nine months. Learning from this, I guess doctors just see me as an older, brown, overweight woman. All categories that get dismissed in our society.

Like most women, I have found it difficult to stand up to "professionals"- people in professions that our culture tell us are experts. We were taught that respect=smiling acceptance. We were taught not to rock the boat. This definitely applies to physicians. But this latest episode of medical dismissiveness nearly cost me my life, so I am definitely going to speak out.

I have been pondering what action I would take regarding the first neurologist I saw. His final diagnosis was that I simply had neuropathy in my upper and lower extremities and all my other concerns could be explained as the result of having RA. Never mind that my rheumatologist had been the one to say my lack of balance was not RA related and he referred me to this neurologist. I remember that I brought a friend to that appointment and even he was shocked at how casual this neurologist was in my appointment. It was even in his posture: the doctor sat slouched, one leg extended and one hand propped up his head. It seemed as if he was tired and maybe even bored with our discussion.

So I have decided that I will write that doctor and tell him about my recent emergency hospitalization and surgery. I want him to hear that 11 days after he dismissed me I ended up almost paralyzed. I am posting here the letter I am sending him.  I do this for two reasons. The first is purely personal. Speaking up and telling a doctor that he was wrong is hard for me so I am doing so publicly as an act of empowerment. Secondly, I hope this inspires someone who may be experiencing the same to speak up for themselves.

Dear Dr X,

I first came to you on June 26, 2024 for balance impairment and possible carpal tunnel consult. You ordered upper and lower extremity testing and consults with a hand specialist and a brain neurologist specialist. I came back to go over the results, July 25, 2024 but it turned out the MRI done on my brain was not inclusive of the one you needed so you ordered another brain MRI and I did not come back for all my results until August 15, 2024.

I remember telling you how my hands were not functional. My fingers were numb and I had burning in my thumb and second finger. I felt crushing pain and rigidity up my forearms. My walking was very problematic and and I was falling fairly regularly. I had to use a walker. Your conclusion was that I had carpal tunnel causing my hand problems and the effects of rheumatoid arthritis was causing the rest. You did mention that perhaps I might consider getting spinal MRIs in the fall/ winter. 

I was stunned by your conclusion as I knew something was terribly wrong with me, and it was not just from my RA, which I had been living with for years and felt I knew well the symptoms. Also, my rheumatologist had referred me to you in the first place because he said my loss of balance was not related to my RA. I did not feel carpal tunnel explained the muscle crushing pain and rigidity up my arm. When I asked you why I was falling, you replied "maybe you have an inner ear infection; perhaps you'll want to consult an ENT”.  I was very disappointed and felt you were not taking me seriously.

I want to tell you what has happened to me since our last visit in the hope that it will lead you to reevaluate what I feel were dismissals of my symptoms and concerns.

I left your office dejected. I felt I was on a runaway train that was going to crash and nobody was helping me. My physical decline was happening so quickly that I feared what my condition would be by January 2025. I sought a second neurological opinion.

August 26, 2024, 11 days after my final consultation with you, I had a consultation with another neurologist. Upon an extensive physical examination, she summarized in her notes ”On neurological exam, patient has impaired proprioception and vibration on bilateral feet and hands, positive romberg and Lhermitte sign positive. Given the symptoms, gait abnormality could be multifactorial due to sensory neuropathy and spinal spondylosis due to RA. Will obtain MRI cervical and thoracic to rule out any structural/demyelinating causes.”

I had my cervical and lumbar MRIs on September 16, 2024 and my thoracic MRI on September 17, 2024. On September 18, 2024, I received a message from the ordering neurologist “Hi Deborah, the MRI of your spine shows compression of your spinal cord. I recommend you go to the ED for urgent evaluation by neurosurgery.” 

This ER visit on September 18, 2024 resulted in emergency hospitalization and spinal surgery. The neurologists and neurosurgeons all said it was a miracle that I came in that night; that if I had jerked my neck in anyway, I would've been paralyzed. They said my symptoms showed severe myelopathy and questioned why I had not sought help earlier!

I ended up having spinal surgery: ACDF of C3 and C4, corpectomy of C4 and ACDF of C4 and C5. The neurosurgeon says my spinal cord has been harmed, and I am left not knowing if any of my impairments will be reversed.

As I mentioned earlier, I am writing you this letter to highlight what I hope was a rare lapse in

professional judgment. But I can tell you as your patient I left your office feeling you did not take me serious and I  almost felt hopeless. I know you got into medicine to help people. My hopes are that my experience will benefit you in your treatment of future patients.

Hospital

Upon reading the two sentences from my Neurologist (see former post), I was stunned. I doubted the urgency of what I was reading so I called the neurology department and asked for the on-call doctor. That neurologist, Dr. P, was wonderful. He talked calmly and kept me on the phone until he got me to promise to come in to the emergency department that night. He said "I am looking at your MRIs and I would get here as soon as you can."

Upon hindsight, I see I was in a stunned, stupid mode. It was Wednesday and I asked 'is it OK if I just wait until Friday when I see Dr. A for my appointment?" He replied "is that the soonest you can get to the ER?" I told him that frankly, I did not feel well; I was in pain and too tired to deal with a many hours wait in ER.  I asked "how about tomorrow morning.?" Again he asked "is that the soonest you can get here?"

It was finally dawning on me that this was an emergency. Dr. P said he was on call and said "how about if I wait for you in the ER and also I will let the on-call neurosurgeon know to be expecting you." Wow. So I packed a backpack with a change of underwear and toiletries because I was getting the feeling I might be admitted overnight.  Little did I know I would be there for eight days and undergo major surgery. 

I never had an ER experience such as the one I had that night. I was taken into triage immediately and ended up waiting about three minutes before I was taken back to a private room. They took my walker and said I would not be needing that anymore; from then on it was a wheelchair. Dr  P was waiting for me and told me they were starting me on high dose steroids to bring down the swelling around my spine.

I was pretty calm as I had a great doctor tending me very closely and a great nurse. I was still recovering from my hand surgery and had stitches in my right hand that were inflamed so the ER nurse cleaned and bandaged that wound. This would later be a point of contention with an unpleasant nurse.

I was held in observation for a couple days, getting steroids through an IV and NPO (no food or liquids) in case I needed to be brought into surgery. Many doctors and students came to examine me because Cleveland Clinic is a teaching hospital. I was finally getting very thorough and detailed examinations and it was there that I started hearing the word myelopathy. And mine was severe.

Eventually, I went to a real hospital room. There, they implemented the most stringent fall risk guidelines and I literally had alarms on my bed and chair that would go off if I tried to get up. I had to call a nurse just to go to the bathroom. My walking was so bad that my daily plan of action was simply 10 steps.
And I was given a big collar to wear around my neck. 

My dear friend, DL was there constantly and my sister traveled from North Florida to be with me. My aide lifted my spirits by taking funny pictures of me.

Dr P visited me often (loved him). At the end of the second day he asked me "you know what we're concerned about, right?" I said "no." He replied "paralysis." Again, I was stunned. 

Several medical professionals would later tell me that it was incredible timing that I came in that night because I was one casual step towards a catastrophic spinal emergency. They said any kind of fall, even a quick jerk of my neck could have caused me to be paralyzed. All the symptoms I had been having for six months were very serious and now I had spinal damage. And I had been walking around going to three previous doctors asking for help in this condition! I do feel it was a spiritual intervention of sorts. I feel my angels, ancestors, God, Godess, intervened, and brought me there. More on than that later.

Friday evening a neurosurgery physician assistant (PA),T,  finally came to give me their recommendations. I had been seeing neurologists up to that point and he told me that from then on I would be dealing with neurosurgeons.

He explained that my cervical spinal compression had caused severe myelopathy and that my spinal cord had already been damaged. I would need spinal surgery to correct the situation. I thought I had been dealing with nerve damage in my spine for the last year, so hearing the spine had now been compromised was tough. They speculated that a degenerative disease, like my rheumatoid arthritis, was a huge factor for the tremendous decline the past year.

He was happy to tell me I did not need emergency surgery, but rather they were scheduling me for surgery Monday or Tuesday. But they would not release me to go home and return. I had to stay in the hospital until the surgery as I was too high risk to be discharged. To me this felt like an emergency surgery!

I asked who actually would be doing my surgery and I emphasized that I did not want anyone touching my spine that was not a neurosurgeon. I was reassured that only neurosurgeons would touch my spine and they were not just neurosurgeons, but also had advanced training to also be neurosurgeon spine specialists.

 The head surgeon, Dr. S, was thinking of two different procedures he might perform: anterior cervical discectomy and fusion(ACDF) and corpectomy. He would decide once he had opened me up and could examine the situation firsthand. I ended up having ACDF of C3 and C4, a corpectomy of C4, and ACDF of C4 and C5.

He then told me we needed to talk about expectations. Uh oh. I had been telling doctors for the last four months to please focus on two things: giving me my hands back and back pain. While I wanted to walk normally again, losing the use of my hands/arms was more devastating. And the daily back pain I experience had become unbearable.

T broke the news to me that I also had spinal compression in the thoracic and lumbar areas and those would later need attention! He said spine medicine dictates that they work from the top to the bottom. Cervical issues are addressed first and are seen as the most important since they nourish all the vertebrae below. So my tremendous pain in the lumbar area would not be addressed at this time.

He also wanted to clarify another difference in their and mine expectations. T emphasized that the medical team's goal was solely to stop the progression of spinal damage, not to reverse or cure any of the damage. If I experienced improvement to my hand or feet functions after the surgery, that was great, but not the goal of the surgery. He stressed that the medical team could not tell me if I would regain any more use of my hands and legs.  They simply did not know how much of the damage was spinal cord related and how much nerve related. The spinal cord does not heal, but nerves may heal. With physical therapy, it will take about four months to a year to find out what I'm left with. 

This was sobering and sad. I am also mad that so many doctors did not take my complaints seriously and never ordered MRIs. And now I was left in this terrible condition. I will write more about this later.

My 4 1/2 hours surgery seems to have gone well. Call me bionic woman as I have so much titanium in my body: spine and knee. Because anesthesiologists manipulate and rotate your head while intubating you and putting you under, Dr. S determined I would have to be put under manually, without the aid of anesthesia. This was to avoid rotating my head/neck as I was so bad off they could not risk rotating my neck for fear of paralysis. This process was horrific for me and I'm still suffering from nightmares from it. No doubt I will write about this as well.

But I came through with flying colors (I think). And I live to write about it with the aid of my Macbook Pro dictation feature. I have to wear my neck brace for eight weeks and I start physical therapy four weeks after surgery. It has been weeks and my voice is still raw and I have occasional difficulty swallowing from the surgeons pinning back my vocal cords and esophagus. They went through the front so I have a scar on my throat. Kool! Hopefully it will lend itself to a mysterious air about me.

I have much gratitude for the people in my life that gave me love and support. My friend DL, my sister who came down from Northern Florida, my other sister who sent loving messages through the phone, friends with whom I shared long voice messages with, my aide who visited me outside of work hours and countless healthcare professionals who did their job efficiently, but also with care and concern. 

I have to be patient and wait and work for any improvements as a result of the surgery. I'll keep you posted on my recovery. And as the dust settles, I will write about other side experiences and also about lessons learned, of which there were many.

As the dust settles…

I have been experiencing writers block. You see, I have been on a health roller coaster decline for the last six months and it culminated several weeks ago with emergency hospitalization and surgery. This whole experience has been of such magnitude that I realize I am looking at my life as pre-spine decompression and post spine decompression. I find it hard to write about because I feel I cannot convey the magnitude of the life changing effect the last six months has had on my whole (physical, psychological and spiritual) body. No doubt I will write several blog posts about these experiences because there were many important things packed into this timeline.

I'll start with a brief summary of my physical decline leading up to hospitalization. There are so many healthcare providers I saw over the last six months and so many tests and imaging that I can only give a summary in broad strokes. There were conflicting diagnosis' and treatments offered. I was an advocate for myself and stood up to medical gaslighting. I endured what later would be discovered to be an unnecessary hand surgery. My physical decline and the medical trauma I experienced over six months have forged inner growth that I will talk about in another post. In times such as these, I loved looking at this sticker on my bulletin board near my desk.

As you know, I live with an autoimmune illness, rheumatoid arthritis. I have shared about the constant pain, decreased mobility, exhaustion and other systemic symptoms. But six months ago, I began a rapid decline in the use of my legs and hands. I sensed that something different was going on and it was serious. But my doctors kept telling me it was 'just' my RA and there was nothing much I could do differently about it.  My rheumatologist offered additional medication (sulfasalazine) which I ended up not taking because I was afraid of the side effects. I continued to suffer and decline in my ability to walk and in daily hand functions such as opening a bottle, using utensils, being able to dress myself! 

Two months later, I knew that something was terribly wrong with me. I had lost coordination of my fingers and strength in my grip. I experienced terrible burning pain in my thumb and pointer finger and all of my fingers were totally numb. I had crushing pain up my arms and my muscles felt like beef jerky- stiff and unbendable. I could not walk with one foot in front of the other, nor could I stand for any period of time without losing my balance and falling. I had to use a walker and wheelchair and even installed a chair lift in my townhome because I could not handle the stairs. And the pain up and down my spine was intractable. My quality of life was quickly decreasing. In addition to the loss of daily functional abilities, my days were filled with pain, pain, pain.

My pain doctor increased my nerve medication to its' max limit, gave me Tylenol 4 with codeine, a  muscle relaxant and we were planning for more spinal epidurals. I was miserable. Living in constant pain is no quality of life.

In an emergency visit to my rheumatologist, I was given a short course of steroids for inflammation. The terrible pain and burning and loss of function of my hands was attributed to carpal tunnel. And I was (finally) referred to a neurologist for my loss of balance and difficulty walking. This Neurologist wasted months of my time gaslighting me. He sent me to a hand surgeon who ended up performing hand surgery altering three things in my right hand, which I would later discover was probably not necessary. I will write more about that later. I do believe the universe keeps sending you lessons until you master them. Medical gaslighting was something I had difficulty standing up to in the past. I'm very proud of myself that I pushed past my self doubts and searched for another neurologist for a third opinion. It saved my life.

I researched neurologists with five stars reviews, and I decided to pick a woman, thinking perhaps a

woman would listen to me more. I found a brilliant young, black,  female neurologist, top in her field of multiple sclerosis, Dr A.  Her fellow conducted an hour long thorough physical exam, and took note that I was severely impaired. When Dr A came in, I looked her in the eye with tears and told her I felt I was on a runaway train that was going to crash because my symptoms were declining so rapidly and nobody was doing anything. She looked back at me and said "what's happening to you is not normal and we will find the reason. " She ordered blood tests for obscure illnesses that could produce my symptoms and a complete MRI of my spine.

Interestingly. when her fellow was finishing paperwork with me, she asked me how I came to choose this neurologist for another opinion. I told her I went by her credentials and high ratings, but that I also picked her because I felt a woman might listen to me more. Without missing a beat, that female fellow told me "We do."

The MRI's were divided over two days. Monday, I would get cervical and lumbar MRIs and I would get my thoracic MRI on Tuesday. I had to take tranquilizers to do the MRIs as I am very claustrophobic. On Wednesday, 6:30 PM,  I check my email and saw I had an email on My Chart app. Thinking it was an appointment reminder, I almost did not look at it, but I decided since I have MRIs pending results I would check it out. When I checked the message, it was from Dr A and her message was just two sentences:

“Hi Deborah, the MRI of your spine shows compression of your spinal cord. I recommend you go to the ED for urgent evaluation by neurosurgery." 

And thus began the beginning of my treatment. Finally. Someone had listened.

Invisibility

This wonderful painting is by a talented illustrator and designer named Cristal Gutierrez. Amazingly she

does not identify as a painter and I think this was her first painting. Exhibited in the art show The Politics of Womanhood", Crystal wrote "I wanted to illustrate what it feels like to be a woman of color in today's society and political climate. There is so much that is thrown in our direction from Eurocentric Beauty standards to misogynistic politicians. And it all feels like they're trying to knock us down and keep our voices silent, but despite all we persist, we take their "arrows "and crush them. Also, the monarch butterflies are in representation of our immigrant community".

I was bowled over by this painting when I first saw it. It is actually one of few artworks I select to hang on my bulletin board or on my walls other than my own. (A girl only has so much blank spaces! ) I did not need to read her meaning behind the painting to get exactly what was represented. I have felt this way all my life. Being a US citizen, of immigrant parents, and living in brown skin, I've been pierced by those same arrows.

I was fetishized as a spicy Latina off and on through to my late 40s. Of course that stereotype ended once I reached a "mature age", where women become asexual in the general public's eye. The exotic, dark lip, big hoop wearing, sexy attire trope was one I exploited at different times of my life. But I learned that embracing this stereotype was not helpful. It gave me fleeting, shallow validation and erased my real womanhood and experiences.

So, I learned to live in my own skin and present to the world, my own interpretation of my femininity race and culture. I am a brown skinned Latina with textured hair, full lips and nose, who grew up in the South being called "nigger" by neighbors, school children, even the father of one of the men I dated. My family and I suffered blatant discrimination, racism and even violence because we were seen as non-white.

I was constantly denied my Latina culture and conveniently considered Mulatta (black/white). White culture in the South knew I was not one of them, but they remained too ignorant to learn where to place me so I became "mixed" (black/white) in their eyes. They erased my immigrant Peruvian culture, my Spanish language and my US Latina experiences with racism. 

I do not experience these harsh realities on a personal level as much today. (On a societal level, I, along with all people of color in this country, are facing second-class citizenship with the rise of the far right. But back to the personal.) This is because I surround myself with considerate, politically progressive, intelligent people. But interpersonal micro and macro aggressions still crop up and the healing from the past traumas is an ongoing process. 

So it is surprising and painful when I am occasionally confronted with a friend's racist erasure of my identity. I have had white friends tell me, since I was a child, that they see me as white. That for them, they don't consider me "hispanic, like Mexicans". I know this is done in their hearts as a way to push aside, any bigoted feelings they have and make me feel accepted, but it actually isolated me further. 

What bothers me more is when other people of color, usually blacks, assign me as white or if they see me as an ethnic "Hispanic'" they sanitize and depoliticize what the Latino experience in the US has been. They often do not see Latinos as having experienced racism much. We are an ethnic "lite". Kind of like modern US Italians or Greeks.

This post was inspired by a conversation I had yesterday with a dear friend of 22 years. He is a 65+ year old black man from the South and knows intimately the racism in the US toward black men. In the past 22 years I have educated him that I am a person of color and I have at one point had a discussion about what that meant to me. He has read this blog and has even commented about my parents Peruvian lives and passages I have written describing racist aggressions against me and my family growing up. He knows.

So, imagine my surprise when he laughingly remarked several times how he "always forgets" that I am Latina. It came on the heels of me describing my niece's Guatemalan wedding plans and how some of my nieces and nephews are both Guatemalan and Peruvian. His amazement that yes, South American blood runs through my family's veins was such a slap in the face. I guess because I am educated, speak English without a Spanish accent and am lighter in comparison to his black skin, he keeps returning to his default setting that views me as white.

I was angered after the initial gut punch. But I know he meant no harm. I was having a hard reaction but decided to just sit with it and finish the discussion until I could sort it out. I am just very frustrated. This has happened before with other black acquaintances/friends. I think I understand why but it's still not acceptable. The history of black slavery was so heinous and the assault on blacks remains so prevalent, that many Black people have difficulty looking past their own experiences to fully comprehend the reality that US racism oppressed/es all people of color in deplorable ways. From the initial genocide of Native Americans to the stealing of Mexican land and subsequent oppression of all Latinos. Not to mention camps and enforced labor (slavery by different names) for other racial groups, forced sterilizations for women of color ... and the list goes on.  We need to see and understand each other's realities. And be allies and united in order to affect any progressive change. We cannot invalidate each other's experiences.

But one can only remain ignorant for so long. Once informed and educated, not growing in your understanding becomes a choice. As far as my dear friend and I, I continued the discussion and decided to  revisit it over the weekend. I needed time for a fresh perspective. Today I'm more saddened than I am angry. Aside from writing this post, I am not going to talk to him about it. I already have several times in the past. He may read it on his own and hopefully ask to talk about it with me.

I am at a point in my life that if I educate someone on my racial/cultural identity twice and they do not readjust their thinking with this new information, I will probably just leave it. God knows, this erasure has also happened many more times with white acquaintances/supposed friends. When it comes to my racial/cultural erasure, I feel sad for them. Because they are losing the richness of my experiences, my culture in their world. It is their loss. But sadly, it does pose some alienation within the relationship for me, but I am not going to spin my wheels on this.

It took me decades to learn that I can only do so much to affect beliefs and actions of others. What I need to spend my time on are my beliefs and actions. That leads to a more peaceful life.

PS: I refer to my Latino racial and cultural identity throughout this post. This may confuse many readers because most Latinos in the US are assigned white at birth and seen only as a cultural ethnic group.  This racial whitewash comes as a result of white culture's ignorance of Latinos. Latinos are a mixed race people. We have a racial composition of indigenous and European ancestry. This is the result of colonization.

I no longer check the white box on questionnaires that ask my race because I embrace my indigenous heritage. I reclaim my indigenous roots and since my experience in the US has been clearly as a non-white person I will not label myself as white but rather as mixed race. Not the mulatto mixed race that classified me as black and white. But the mixed race of my Andean indigenous blood mix with the conquerors European 

I once did the ancestry.com type of DNA profile. When I saw that I was a majority 'native' of South America (indigenous) and then European Iberian Peninsula, (ie Spain), I cried. l literally saw on paper the rapes of the indigenous women in my bloodline. Scientific evidence of the MFing European conquerors premeditated campaign to breed out the 'ignorant savages' they were trying to erase. They failed and I am here as testament.

PSS This picture of me was taken about eight years ago when I had fuller, semi straightened hair, but you can still see my ethnicity clearly. Other times of my life, with sun and natural hair... you can imagine. 

Rest in power Moumita Debnath

Trigger warning: sexual violence

On 9 August 2024, Moumita Debnath, a trainee doctor at R. G. Kar Medical College in Kolkata, West Bengal, India, was raped and murdered in a college building. This case has really shaken me. 

After a 30+ hour shift at the hospital, Moumita tried to catch some winks on site in a  student auditorium. The following day, her body was found dead, brutally gang raped, and murdered. Initially police covered it up as suicide, but as details emerged, it is an astounding case of brutality involving sex trafficking.

Many news outlets have chosen to cover the story without mentioning the actual acts of violence perpetrated on Moumita for their audience's sake. They are already prefacing the stories with trigger warnings, so why not tell the truth. We need to bear witness. Moumitas body was found with her upper half on a raised surface and her legs hanging off at an unnatural angle. She was covered with 113 bite marks, broken bones throughout her body, glass shards in her eyes, her legs were pulled so far apart that her pelvis was broken open and she contained enough semen to determine that over 17 men had ejaculated inside of her.

Just sit with that.

Doctors, healthcare workers, and the general population have been protesting, calling for justice. Doctors have gone on strike, canceling all elective surgeries. Public outcry has forced police to investigate the cover-up.

Moumitas parents were initially told she committed suicide. Their insistence on the autopsy report revealed the truth. We now know that Moumita was one of a long line of healthcare workers at that hospital who have died in suspicious circumstances. The one thing they all have in common is that they all began to suspect and attempt to expose sex trafficking occurring within the hospital setting. Clearly, an example was made of Moumita as to what would happen to women standing up for their integrity and safety. The many men involved in this murder have not been apprehended.

I asked a friend who is very up-to-date on international and political news if he had heard of this case and he had not. We need to spread this story around so that we bear witness to the sexual and gender based violence that occurs around the world. This is not just a problem in India. In our own backyards, there are women slain through male violence. It's so common. We can not just sigh and move on. Women are half the world, we can rise up and say no more! It will take organizing, courage, tenacity. 

Are you in?

Twin Peaks

 

In recovery circles, there is a saying, revolving around an acronym, HALT, which refers to stopping and re-grounding yourself when you find yourself hungry, angry, lonely, and tired. I recently found myself out by myself when I was physically in pain, very tired,  and having just come out of a disappointing doctors appointment. I remembered HALT. I needed to regroup. Luckily I have no qualms going to a restaurant by myself so I set about finding a nice place to relax and eat.

Among the restaurants near me was Twin Peaks, a sports bar a la Hooters. The draw at Twin Peaks are the waitresses which sport a teasing top, showing off their lovely Twin Peaks. It also has a great menu and televisions at every booth, not to mention the walls and bar. 

On that particular day, I was looking for a place to rest and watch the 2024 Paris Olympics semifinal in men's basketball. So I hobbled into Twin Peaks on my walker and was immediately buoyed by the loud cheers of the mostly male guests. The whole bar was watching the game and it was a good one! Electricity was in the air.

I was happy to be there. Now, I have been to Hooters and Twin Peaks several times and I always make a point to connect with the waitress and try to find something to genuinely complement her that isn't the obvious T and A. I complimented my waitress on her bling as her belt was completely bedazzled in rhinestones and her boots were as well. She told me about the Twin Peaks uniform guidelines and was enthusiastic explaining her choices as to how she personalizes her uniform.

I had a particularly nice interaction with this waitress so before I left, I told her that she was lovely both in personality and in looks and she radiated warmth. I told her that when I was her age (under 25), I looked at my body with harsh criticisms and felt insecure about my looks, but now, having gained and wisdom, I see how beautiful I was. I see now that I was beautifully flawed and quite beautiful. I told her that I hope she realizes how striking she is and she, in turn, told me her criticisms and unhappinesses with her body. I left her with a wish for her to see and appreciate her beauty now and not have to wait 40 years to do so.

I told a dear male friend about this interaction and he asked me why I make more of a point to try to connect with the waitresses in this particular restaurant over others and I replied because I am sensitive to the sexual objectification of these waitresses. He responded by saying those waitresses choose to work there and that they are making money off their looks; more than waitresses who do not dress provocatively. So how, he asked, how were they were being exploited?

Another male friend told me he felt that as long as we live in a society that does not provide free education, healthcare and childcare, women will often find they have to use their bodies to make the income they need. And that is exploitation. 

What do you think about this issue?

No matter what you think, if you find yourself wanting to catch a game at a sports bar, I do recommend the Twin Peaks Caribbean cocktail, pepperoni flatbread, grilled asparagus and caramel apple turnovers. Sit in a booth with your own TV.

And please, tip generously.

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.

People over profits - abolish step therapy

People with chronic illnesses and rare diseases are well familiar with "step therapy", which is also known as "fail first" policies. Step therapy is a policy US health insurance companies implemented to lower their cost. The aim of step therapy is to replace costly medications with cheaper ones. The problem lies in the fact that many of the medications that patients need are cutting edge, very expensive drugs. With step therapy, the insurance company only approves old and cheaper drugs when a patient is prescribed an expensive medication. The insurance companies will automatically refuse doctor's authorization requests for better medication until it is proven that the patient absolutely cannot tolerate the cheaper drug. And the bar for "not being able to tolerate" a drug is very high. 

In my case with my autoimmune illness, I was prescribed a biologic medication. My insurance company would not approve it and instead said I needed to try an older, much cheaper drug called methotrexate. Methotrexate is a chemotherapy drug that has very harsh side effects. But it is cheap to produce. My rheumatologist applied for authorization for my biologic injections several times, but kept getting denied.

I suffered tremendously from G.I. side effects from methotrexate for four months. It was not until I had been to the ER three times and was hospitalized one time with gastrointestinal problems that my gastroenterologist wrote my rheumatologist a letter stating that if I was to continue taking methotrexate, he believed I would perforate my intestines. Only then, armed with this letter, did my rheumatologist's subsequent authorization request get approved. While I do have side effects with my biologic (ENBREL) injections, they are far more manageable. I have not had to go to the ER once these past seven months. Patients who suffer, but not as dramatically as I did, will often never be approved for the medication their doctors want for them. They will continue to suffer with the cheaper drug. We must take the profits over people approach out of our healthcare system! Health insurance companies need to let doctors do their jobs without cost curbing policies getting in the way.

Patient advocacy groups have unsuccessfully tried to get limits on step therapy many times. The PAN Foundation, a US charitable group that provides financial assistance for patients who cannot afford their medication, is currently promoting the Safe Step Act (HR 2630/S.652.) to help patients access the best treatment for them, safely and efficiently. Please take a moment to ask your representatives to support this important legislation. Every email counts. Here is their link to a quick and easy action that voices your opinion that patients should come first over profits.

This post deals with the dangers of step therapy to patients in accessing their best medication. But there are other roadblocks to patients getting the medication they need. Once a patient is able to get the prescribed cutting edge drugs, then the issue becomes affordability. Even when insurance is covering part of the costs, the patient will often not be able to afford their co-pay. 

This is because pharmaceutical companies hold patents on their drugs that allow them to set their prices unchecked. These patents block any production of these drugs in a generic form. My Enbrel weekly injections cost me a co-pay over $2500 per month. I cannot afford this. Lucky for me, I have the technological means and skills to seek and apply for online patient assistance programs and I was awarded a grant from the pharmaceutical company that makes Enbrel. I spent four months trying to get patient assistance, all the while suffering from my illness without any medication. Mine is a yearly grant that I will need to keep  applying for. I am keeping my fingers crossed. 

So, we also need to take the profits over people approach out of the pharmaceutical industries. That is a formidable task and another blog post. But do not get discouraged. Just do your part today. All roads start with a single step.