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.

  

Resistance in Bloom

I created this 12”X12”mixed media canvas inspired by the brave Palestinians living in horrific conditions while enduring a genocidal onslaught by Israel. I look at videos by people one the ground there and am heartbroken and enraged. One thing stands out to me within their misery; and that is the Palestinian people’s perseverance to still display their culture and joy for life. Amid ruins, you see them in groups dancing their Dabke and cheering each other in joyful expressions. Facing famine, Palestinian chefs, living in tents, are making videos of how they cook versions of Palestinian dishes with whatever food they can forage. Their determination to survive is expressed in everything they do. 

This art piece consists of collage, acrylic ink and paint, pencil and gelatos.

I went for a grungy background with muted keffiyeh designs floating on surface. I included two black bullet holes. I overlayed this with collaged brilliant flower petals, symbolizing the joy for life coming through. I scribbled messy black outlines over my flowers. 

Although I initially saw the piece being about the Palestine struggle; while creating it, I realized it also speaks to all people enduring battles and not just surviving but thriving. And for me, it really hit home regarding my struggle as an artist living with aggressive RA.

You see, I wanted to create floating flowers over the background that would really pop. So I cut each petal out of vibrant papers I had painted and printed.

But my hands were not cooperating. Due to my RA, my hands and fingers are very stiff, painful and I have lost dexterity. Cutting and gluing the flower petals was very difficult. Just holding paintbrushes and such  results in constant drops. It was maddening.

But I persevered. I took more breaks and it took longer than before. My art is my version of brilliant flowers floating over my private war zone. This piece also speaks to all people who choose to celebrate joy and spread love while dealing with their own struggles. If you like this piece, you can buy a print of it in my Etsy shop.

When I feel defeated as an artist by my body’s inability to move pain-free or with my loss of hand dexterity, I often draw inspiration from the life of renowned Impressionist painter Pierre-August Renoir (1841-1919).  Few people know that in the last several decades of his life, Renoir lived with debilitating rheumatoid arthritis. At a time when little could be done to treat the disease, Renoir, confined to a wheelchair, used his own ingenuity and positive thinking to devise and build contraptions that would hold the paintbrush to his crippled hands. 

Over 200 of his beloved impressionist paintings created during these years hang in museums around the world. He is one of my heroes.

Art journal 1

I have committed to a three month exploration of art journaling. I meet with 13 women from all over on zoom  and we create and share. It is led by a teacher/facilitator. I did not know any of these women, I joined a Meetup.com group for this creative project. I am using this as a form of art therapy for me. I think I will like it. This is my first page.

We set intentions for this 12 week creative process. I choose to focus on my physical healing recovery from autoimmune disease. Interestingly, several women in this group are also dealing with health issues. My body and it's distress are something that preoccupies my life right now and is the  source of much sadness, disappointment, worry  and anger. I am working with natural healing efforts as well as pharmaceuticals. Yet I still am living with a lot of pain. My RA is spreading at a fast rate and I am facing several secondary problems that require yucky interventions. Spinal epidurals, possible joint replacement (again), steroids. It is difficult to perform daily activities. I am really down about these developments. 

The evening we got together for our first journal page, my hands were in severe pain. Painful nodules encompassing joints and new fingers now affected. Even though my hands hurt, I was determined to create with them. That is why I started by covering the bottom half of my page red. Red for pain, inflammation, anger. I wanted to start with that and envision a brighter future with a light yellow rising above the red.

Tree imagery resonates with me. I love their grounding presence and am comforted by their shade and solidness.

They teach us a lesson of perseverance and letting go of what does not suit us. Trees breathe and get moisture through their leaves. When it is summer, leaves grow plentiful and when temperatures drop and the tree does not need so much moisture, they shed their leaves. One of my group sisters shared that analogy. Trees are also home to critters and a place to play. 

I love my childhood memories of special trees. As a 5 year old, I found a magical tree with which I could control the weather. I used a coat hanger stuck in one of it's branches to perform my feats. I charged a penny to hot and sweaty neighborhood kids to lower the temperature a few degrees! We really believed it worked. I was a tree whisperer. Around eight, I loved sitting under a huge honeysuckle tree. The shade and sweet flowers and their aroma was so soothing on summer days. Pulling the center filament out of the honeysuckle flower and dabbing the sweetness on my tongue. Honeysuckle has remained a lifelong favorite scent of mine. As an adult, I have had crushes on special trees that I came across. I would constantly touch them, spend time under them and make small offerings to the tree.   Even my family adopted the imagery of a full branched tree as a source comfort and nurturance. My parents' tombstone displays just such a magnificent tree. This is a painting inspired by their tombstone.

Our facilitator helped me quiet my inner critic as I bemoaned that I did not have the right supplies and that I did not like my page. A few multicolored tear drops, collage pieces that point to writing and art as a vehicle for healing and a fiery purification float across the page. The little owl symbolizes my innate wisdom that I learned to recognize over decades. The vertical strip on the left side of the page is an homage to my mother. My mother was a whiz with mathematics and financial affaires. She used to use an old fashioned keyboard calculator, complete with a paper roll displaying the sums. When she died, I found many unused rolls of calculator paper. I could not throw them away; so I decorated them. I stained, stamped and embellished these archaic office supplies and now incorporate them into letters or journals etc.

I reluctantly offer up this journal page for viewing. It is practice for letting go of my inner critic stranglehold on my creativity. My art journal incorporates artistic expression, but I do not see them as "works of art". But it is fun, releasing and getting my creative juices flowing. And the group process of journaling together is a wonderful healing tool. Even my feline companion, B, joined me in this process. 

She sensed my apprehension and vulnerability, so she held my "paw" entire time.

Touch therapy

I have a gift/skill that is a double edge sword. I somatize feelings and energy that I pick up from others or that I experience myself.. This has helped me in my life because I can trust my spidey-sense when something is off. It is an early detection signal for potential hazards. It also facilitates an easy energetic and emotional connection with many people.

The downside is that I also pick up negative energy around me and that energy gets stored in my body. And of course, my own distress gets lodged in my body. This all causes pains and dis-ease. Since I live with chronic pain and discomfort, I constantly need to assess and release stagnant, unwelcome  energies in my body.

I have learned that stretching, movement and therapeutic touch is super effective in releasing these stored energies. My massage therapist comments how he can literally feel my knots and tension ease up right under her hands. 

My favorite massage place is an Asian business that bills itself as a reflexology spa. Yes, they do reflexology, but really the two men there practice Tui Na.Tui na is an ancient Chinese practice that works with acupuncture meridians to diagnose and treat illness. My Tui Na therapist tells me it is seen as

medicine in his country; not just a relaxation practice. 

I love it. It feels great and noticeably produces improved body function. The massage space is one large room with  comfortable couch beds. I like the communal feel. The business employs two therapists and they do everything. They speak minimal English so I use my phone translator. You may hear other people around you in hushed tones. And your therapist may answer the phone to make appointments during your massage. There is no “front desk person”. It is done very low in volume and discreetly.  You start in the reclining position, clothed and draped with a soft blanket. He works on your feet for 30-45 minutes; a warm foot soak, scrub, lotion and then you lie flat and he works 30-45 minutes your back. I like that I remain clothed and despite the focus on feet and back, all parts of my body get attention. My guy works on my specific areas that need attention; it is totally customized. I  regard my sessions as healing treatments and a vital partof my self care regime.

Since I am an incest and (stranger) sexual violence survivor, I have a lot of trauma stored in my body. I believe it has physically made me unwell and I continually work to release and transform that energy. Along with therapeutic massage, I take care of my body in conscious loving ways. Health-wise as well as pleasure-wise. Acupuncture, yoga, chiropractic.  I want to improve in areas of nutrition and exercise. 

An important part of my self care involves befriending and loving my woman's body. Especially my sexual and sensual self. 

As a woman, I believe all of us need sexual healing because of growing up in a patriarchal and often woman hating culture. For me, I had to understand what the early abuse did to me and release the shame. Then I had to reacquaint my body with loving, playful and consensual sex. This sounds basic; but it has taken me until my 50’s to start really making big strides. And I can now say, at 61, that I have the best sex life in all  of my life.

I started this process by coming out as lesbian in my early 20's. Only allowing sexual and emotional connections with women was crucial in my healing. It was a sexy and safe harbor. I learned to love my body after I loved their bodies. I felt emotionally safe enough to explore and experiment. I was man-free for decades. I loved my community of women. There are so many lessons and tales from these years. Many more posts to come!

I returned to dating men in my 40's. Figuring out I am bi, I felt ready to try out my sexual persona with men, even with all the potential for sexist and ignorant attitudes. At first, I got used and hurt. But quickly, I learned and toughened up. I took charge and maintained a super independent attitude. I went on to a decade of single adventures. More stories to come on this topic as well. 

I reacquainted myself with my sense of femininity and joyfully returned to my more traditionally femme style.  And I sought out and found men who could appreciate my sensuality. I am now very selective in choosing a lover.  I learned what  technical sex acts and maneuvers I like best with men. And when I found someone I trusted enough, I let down  my guard slowly and let him really pleasure me. It took years.

Now, I experience sexual healing regularly. Women! Get yourself a partner(s) that will give you yoni massages, get kinky and always exhibit a non-judgemental playful attitude. There is somebody for every fetish or kink or desire. 

Good sex provides tension relief, emotional nurturance, and plain ole thrills. My lover(s) heal me when they lie with me. I see my sex life as part of my self care. I soak up the energy and visualize it swirling in me from top to bottom. I plan on staying sexual as long as I live. Modifications will continue to be made to accommodate age and health related issues. But I will continue to avail myself of this powerful  medicine.

What do you do for physical self care?

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!

Back again

Hola dear friends. It's me again. I once published a blog called Van Gogh Chica in the early 2000's. It focused on my Buddhism, my art, sex positive tales and every day musings. I loved it and it provided a creative release for me. After several years, traumatic events in my life caused me to retreat and I did not feel safe expressing myself freely for the world to read anymore so I deleted it. 

Sigh. I do regret that. I wish I had just taken it offline so that now, decades later  I could go back and wander through my pages. At the time, I felt vulnerable to judgement and criticism and so I even trashed my many handwritten journals that I had written from the mid 1980's to early 2000's. Again, I regret that. C'est la vie. 

Almost 20 years later,  I am in different place and am now returning to my creative and expressive practices. I liked my former blog name, Van Gogh Chica, because I am a painter and love Vincent Van Gogh; and I am Latina (hence, the "chica".) So I kept it. I tried to get a Van Gogh Chica url but it was not available. So the url is vangoghchica3@blogspot.com. This new blog will continue to be personal writings about my life and thoughts. Hopefully some art and some laughs as well. 

I was single, dating and adventurous in the original Van Gogh Chica. With the new Van Gogh Chica, I am now coupled but in a nontraditional way. Still adventurous. Two big differences from my former life are my entering the grey revolution and the sad fact that I now live with an autoimmune illness: rheumatoid arthritis. Both these developments  are undesirable but I try to make the best of it and plan to share how I maneuver them with flair, optimism and humor. 

Let's dig into old photos and show you me back then and me now. 

Total disclosure, the top picture in my kimono was taken few years post first Van Gogh Chica, but I could not find one for those years. The bottom picture is from 2023. Hair is thinner. And I am softer and fluffier, lol. And I pretty much do not wear heels anymore, which I had on my cute feet in  above photo. The kimono  pic was taken by a date who came to my place for a rewndez vous.  I was feeling myself in a Hugh Hefner-esque sexy pajama look. I still love kimonos and sensual lingerie but not so much 3"+ heels anymore.

I am now a silver fox but I cover my grays and you only see them peeking when it is time for a root touchup. Also, I wear much less makeup than I did 20 years ago. Back then, I worked in cosmetics so I wore a full face of makeup for work and play. Aside from the fact that I can't see well enough without my glasses to do great eye makeup, I now prefer lash extensions and very light makeup. Still love lipstick though.

I am not as fit as I was  back then. Due to the effects of rheumatoid arthritis and other GI issues, I have not been able to return to the active walking, cycling, weight training and swimming I once did regularly. Now, I aim for chair yoga and aquacize. Hope for more in the future.

Now, I have a a medication arsenal that is very taxing. The rheumatoid arthritis medications are a light form of chemotherapy (methotrexate, hydroxychloroquin, leflunomide). It is a double edge sword. I am so grateful for the lessening of daily fevers, exhaustion and severe overall pain; but in return, I am debilitated with GI issues and a severely lowered immunity. So my health issues weigh heavy on my spirit and body these days.

In the earlier Van Gogh Chica, I championed a sex positive feminist lifestyle. I am still the same sexy and fun spirit, just in a 61year old body. That is a trip. I totally feel our societal erasure of older women's sexuality. I buck against that. And menopause has packed a whallop to my  eminine identity. I'll write about that here too.

So, bookmark this blog and come back to me.  Drop me a line if you want. (but trolls will not be tolerated.) I'm baaaaaack.