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.

  

Honoring legacies

 

My father was a larger than life figure to me. His influence on me was greater than the sum of his parts as father, husband, surgeon. Along with my mother, he instilled the importance of familial bonds,  loyalty, tradition and generosity. He was a good son, a good brother and a great provider to his wife and children. He also loved his native homeland: Peru. He and my mother created an alternate family circle in the Louisville (Ky) area with other Peruvian families. So we had substitute "tios", "tias" and "primos" to locally celebrate all the social and important events of our life. And they took us to Peru to see our real family while growing up.

The story of my parents' and oldest sister's immigration to the US is quite harrowing and is the stuff of a great movie epic. I'll save that for a future post(s). While he and my mother would have preferred to live in a larger metropolitan city. That was not in the cards. In the late 1950's, the US government sent foreign doctors to underserved areas in the US with the promise of citizenship for the entire family if certain obligations set by the US were met. So he was sent to be the doctor for  workers building barges on the Ohio river. As it turned out, it took many, many more years than promised for the US government to release my father from obligations and grant citizenship and allow him to open his private practice. My father was bitter about this his whole life. He felt he lost many of his prime years. 

That is how we ended up in Kentucky and that is also why a  small circle of Peruvian doctors ended up in Kentucky. All these foreign doctors had to repeat medical training because the US did not acknowledge their degrees and so they all pretty much ended as up specialists in their field. That is how my father became a surgeon. My father used to always say that if you ever needed a medical specialist (in those days), pick a foreigner; as they will have had double medical training: one in their native country, and again, one in US. 

In the early 1970's my dad joined the newly formed  Peruvian-American Medical Society (PAMS). Of course he and his fellow Peruvian colleagues all networked and socialized with (North) American doctors, associations and hospital administrators. But PAMS was where they found home. There they could network and socialize with other immigrant Peruvian physicians. And while it was never stated in their bylaws, I am sure it was a safe space where they could avoid the racism of the white dominated medical field in the 1950s through 1990s. Again, I will have to save some of the indignities and downright racist happenings for other posts. I will tell their stories.  It is important to know the history. 

PAMS created a charitable arm of their association. They saw the wastefulness of US hospitals and wanted to support poor clinics and hospitals in Peru. My dad used to complain and show me stainless steel surgical implements that are one-time use in the US. He told me how all the hospitals had to do was sterilize them and they could be reused again. The waste killed him because he came from a country that did not have enough medical supplies. So PAMS collected these types of reusable US medical supplies that they would then send to poor clinics and hospitals in Peru.

My heart aches for my young father as I think of him performing surgeries with white colleagues, who after the surgery probably considered him gauche for asking to collect all the surgical implements they were going to throw away. I feel protective of him as I am sure they saw him as, at best, a bit classless. But all the PAMS doctors did this. And after they collected a large amount of items, they would then select a clinic or hospital in Peru, usually on the outskirts of Lima, and send these packages to them so they could be safely reused.

Once, when I was a teenager, a Peruvian ambassador to the US visited Louisville. PAMS hosted a reception for this ambassador in my parents home. As I listened to the ambassador give a small speech. I was so moved when he recounted stories of all the clinics and hospitals that had received PAMS donations over the years. He told how much the medical supplies had meant to the population in those areas and cited numbers of patients seen and surgeries made possible because of these reusable medical supplies. I was very proud. My mother and father have long passed, but I am no less impacted by their memories and proud of them. 

Recently, I had a shoulder surgery in which I had to keep my wounds, clean and dry. In order to shower, I had to buy large pieces of Tegaderm. Tegaderm™ dressings can be used to  protect IV sites, enhance wound healing, prevent skin breakdown, and protect closed surgical incisions. I ended up with an open box of over 100 large sheets of unopened sterile Tegaderm. Ever the thrifty gal, I tried to sell it through Marketplace or Offer Up to no avail. I tried to give it away but no takers. Then I had an AHA! moment and remembered PAMS charitable work. I then decided I wanted to send this to a poor medical site that would appreciate it.

I found a group,  MedShare, that would send it to places where it could be used. They did not care that the box was open as long as each Tegaderm was unopened and sterile.This was a small act for humanity, but it was a huge act of tribute to my father's legacy.  I give money regularly to social justice causes and have donated money for medical supplies before. But this simple act was far more meaningful to me than any other. We all have ways that we can keep the memory and legacy of our loved ones alive and we can always practice paying it forward. The opportunities are always around us. We just have to be vigilant to recognize them.

We Won't Go Back

This a 12"X12" mixed media piece I just completed. The slogan  "We won't go back" has been adopted by outraged women everywhere taking a stand against the repression of women's bodily autonomy. Women's right to safe and accessible abortion is being outlawed across the country. We can't let it happen without a fight. We won't go back to the days of unsafe, illegal coat hanger abortions!

Women's choice over pregnancy and motherhood is a bedrock to women's equality in any society. Without it, she loses equitable standing in education and the work force. Without those, she becomes, at best, a second class citizen.

For me,  this makes an intersectional pro-choice movement one of the most important issues at this time. I know that is a bold statement and I do not say it lightly. I have thought long and hard about this. But when I think of all the many issues we need to be working on strategically, this issue cuts across class, race, religion, etc. If the outlawing of women's control over their bodies continues to be eradicated, our entire democracy will exponentially backslide.

As this piece evolved (I worked two days on an earlier version only to abandon it and restart), I saw anger coming into the piece. Anger that is righteous and fearsome. I welcomed it. I wanted an element of guerrilla grrl resistance. I chose ransom note type of font to imbue a sense of dread. The brick wall (un-coincidentally blue for boys) is no match for the woman breaking through it, amid blood red flames.

And if that is not enough (LOL), I repeat vaginal imagery thought the canvas. The woman emerging parallels a baby crowning somewhat. I wanted to evoke lightning with the yellow jagged line. And it was important to me that she gazed directly at the viewer. She is not passive. 

I feel good about this piece. While painting, I kept hearing my art school professors decrying the propagandist viewpoint as poster art, not "fine" art. But weren't Goya's paintings political? One good thing about being 62 is that I no longer internalize mandates that do not make sense to me about my art. 

Now, it is not necessary to have gotten all that from looking at this piece. If you are drawn to it for whatever reason, that makes me happy. If you like this artwork or the message or both, you can shop it in my Etsy store here.