Yes, that is a toothbrush in the photo. I’ll explain that in another post. It’s what the kids call an Easter egg.
My overall thesis for my blog has always been that we have more in common than we think, like with cancer and scleroderma. Autoimmune illnesses like scleroderma, and cancer are completely different illnesses; but both used to be death sentences. Many cancer drugs, like methotrexate, are used off-label, improving the lives of countless patients with autoimmune diseases. I am one of those patients.
Methotrexate slows the growth of tumors, cures deadly pregnancy complications like ectopic pregnancies, and slows the progression of deadly autoimmune diseases. Methotrexate has a wider range than Mariah Carey.
Methotrexate isn’t the only drug that can be used for autoimmune illnesses. I was prescribed Ofev in 2022. Ofev is a lung cancer drug now approved by the FDA to treat pulmonary fibrosis. I’ve taken a lot of medications for scleroderma, but this cancer drug is the first to send me games and a journal. Ofev has a program called Open Doors. It’s a patient support program.
I went to Ofev’s website and filled out some online forms. A nurse from Open Doors contacted me. The nurse’s job was to ensure I understood what I was being treated for, and the side effects of my treatment. I was given phone numbers and was told I would be sent some things to help me communicate with my friends and family.
Of course, I will always talk to my doctors and pharmacists first about my treatment. Open Doors does not replace my doctor and pharmacists who manage me directly. This is for information about dealing with side effects and questions about the drug and tracking my reactions to treatment, and oh the schwag!
Remember the Big Pharma schwag from the 1990s? They had the best pens and stress balls. But this time, instead of pens, I was sent a deck of cards with conversation prompts, a journal with positive writing prompts, and material about managing side effects. This is the first time a pharmaceutical company has sent me something helpful to cope with the side effects and provide a source for questions about Ofev itself, and now I have a ton of writing prompts.
I love writing prompts, especially when it comes to writing about my experience. If you’ve read my blog before, you’ve seen that I tie things together. Sometimes I take the whole hayride to get to my point, and writing prompts make the hay ride shorter.
I’ve challenged myself to use the cards to write something once daily for thirty days. I won’t be posting my daily posts from these prompts to leave myself the option to write about “wounds” in this exercise. “Scars” are former “wounds” that have been processed in therapy that I’m comfortable talking about. I’m going to use the hell out of writing prompts.
References
Methotrexate History
Methotrexate in Rheumatoid Arthritis (2013)cancer,
We all have a friend who starts talking about something and then takes us somewhere we had no idea we were going. It’s me. Hi, I’m Karen. This post is all over the place and I’m taking suggestions.
My goal with the blog and now my podcast- I have yet to update – is to bring chronic illness awareness outside the scleroderma community, but there’s more to it. After twenty-seven years, I finally understand why I am so pissed off about American Healthcare. American Healthcare is the problem.
Since being diagnosed with my second chronic illness, I realized scleroderma was only one of my issues. It’s never just scleroderma.
But first, scleroderma. Like many with chronic illnesses, I felt isolated because I knew no one else with scleroderma when I was diagnosed. I used to get upset when friends and family went to cancer fundraisers, but never my scleroderma walks.
It’s not that they didn’t like me. It’s that scleroderma had never touched their lives on a daily basis like their loved one with cancer or whatever wasn’t scleroderma. So I began to look for things I have in common with other people or illnesses. The one thing I found constant in everyone is that we all face challenges. One challenge is not more valid than another. It’s not a contest. Also, when there are breakthroughs in conditions or diseases other than mine, this elevates care for all.
Everyone knows about cancer. But did you know that cancer medications like Ofev for lung cancer treat pulmonary fibrosis in scleroderma? Do you know how they found out? Because when a drug is developed and approved by the FDA, the research doesn’t stop there. It continues. Things change as more information is studied, and then studies are studied and repeated.
I have pulmonary fibrosis due to scleroderma. The good news is that in the research of medication to treat lung cancer, someone noticed some benefits for individuals with pulmonary fibrosis. Recently, that medication was approved to treat and prevent pulmonary fibrosis with scleroderma by the FDA.
The situation I faced was not unlike what all Americans faced during the COVID vaccine roll-out. Is the benefit worth the risk?
Now, like the covid vaccine, Ofev is relatively new. Both medications were not created overnight. Although it felt like it with the covid vaccine, it was not created overnight. Here’s why: In my case, I had my radar up because I knew that someday my lungs would harden enough for me to need supplemental oxygen or a lung transplant. So when my prescribing physician told me the FDA approved something for pulmonary fibrosis with scleroderma, I wanted it yesterday.
With the Covid vaccine, there were already vaccines available for the viruses like Covid. Once we were able to genetically code it (and by we, I mean researchers doing actual research. not blog comparison), it was tested, approved, and tested more and then approved for the population by the FDA. No one pulled this vaccine out of their ass. Just like no one pulled Ofev out of their ass.
With Ofev, the side effects and complications risks were present, and I had to learn how to manage them so my body could continue to tolerate prolonged use. Was I going to try it, even though it’s relatively new but has been deemed safe by the FDA? Fuck yes. Because I am lucky to have lived long enough to stop the hardening of my lungs.
The risk of side effects and even death, is worth it to avoid more hardening of my lungs. This is an opportunity to keep my lungs functioning without supplemental oxygen or the need for a lung transplant.
So if you come at me with the whole, Covid vaccine is new, and you’re declining your vaccination because some guy with no medical training tells you it’s not studied enough, I will have to tell you to fuck yourself. That’s how medicine works, asshole.
Those who refuse to get vaccinated for anything that benefits public health (if your health allows you to be vaccinated), you put millions of other Americans, including me, at risk of dying. Due to the way medical necessities are handled in the United States, many freedoms are already taken away from disabled and chronically ill Americans.
So we’re restricted by the shitty American healthcare system, and then there are self-righteous anti-vaxxers restricting us even more.
We already receive the bare minimum of assistance that helps us thrive in our community. We are at the mercy of our caregivers, the for-profit companies that pay shareholders instead of staffing best for patients. We are forced to wait for life-sustaining care or given equipment that crates more problems because everything is cost over convenience.
I honestly don’t know my mission for this blog yet. But I know that Americans with disabilities and chronic illnesses are treated like shit here in the United States. And I’m fucking tired of it. Non-profit foundations compete for funds. Every year chronic illness patients have to travel to the capital of our nation and beg our representatives to help us get better research and care. Every time I see it, I admire the struggle these patients have to go through so whatever representative can have a photo opp saying, “See, I do care.” And then the same representatives vote against assistance programs after the photo opp. I am tired of seeing chronic illness patients and disabled Americans struggle needlessly.
I’m trying to figure out a way to show Americans who believe that Social Security and Medicare should be removed. That is a stupid idea. We need to make it better. And recent COLA increases are a start. When someone’s evaluated, it’s like a guilty until proven innocent thing. It isn’t enough to have the diagnosis; we must live at the lowest rung of the economic ladder.
I am lucky. I have veterans benefits in addition to Social Security and Medicare. People have told me that I should get the best because I’m a veteran. But you know, everyone who serves their country knows someone who has to choose between medicine, food, and rent. All Americans deserve the best healthcare. The reason we all don’t have it is because insurance companies can afford to pay lobbyists to keep it that way. It’s probably more complicated, but can we all start thinking about this?
The only suggestion I have right now is to look at who you’re voting for.
