Revisit, revise, reset, renew (?)

It has been a long time since I’ve posted to my blog, and it is not for lack of things happening. That is not the case, at all. There has been A LOT going on in the background as it relates to dealing with lupus. As you may know, there is no cure for lupus right now and the nature of the disease keeps us (and doctors and researchers etc.) guessing when it comes to new manifestations and treatments. 

For me, since my last post (a billion years ago–ok, 3!), there are things that I am not ready to share just yet (although, I would LOVE to because these are important issues to discuss as it relates to #lupus, living with chronic illnesses, managing an invisible illness and being immunocompromised). However, I will share a very brief update. Part of it is just feeling like I want to give back (I did have a purpose to starting this blog in the first place), but also, given the state of the world, I wanted to share a few thoughts on navigating as someone who “looks fine” but has considerable worries.

 NOTE: I like to try and explain things more or filter searches for you, but this will have to do for now (sorry!).

• Sun sensitivity 2019 – I have become even more sun sensitive, where the effects are more outwardly apparent than before. Not only do I feel “sick” after being out in the sun (I’ve always told people “I am allergic to the sun), I have now developed bad rashes and swelling in areas exposed, even while doing my best to cover up and/or use sunscreen regularly (I will eventually describe this, but here are some helpful articles and resources I’ve been using).
  • https://www.hss.edu/playbook/lupus-sun-sensitivity-what-you-need-to-know/
  • https://www.lupus.org/resources/uv-exposure-what-you-need-to-know
  • https://www.lupus.org/resources/research-on-photosensitivity-among-people-with-lupus
  • https://www.coolibar.com/
  • https://www.google.com/search?sxsrf=ALeKk01epY__2w4BARnWHf26ifHkdDTNNg%3A1596665730423&ei=gi8rX62qGaKuytMPru2bmA4&q=sun+tent+with+spf&oq=sun+tent+with+spf&gs_lcp=CgZwc3ktYWIQAzIICCEQFhAdEB4yCAghEBYQHRAeMggIIRAWEB0QHjIICCEQFhAdEB4yCAghEBYQHRAeMggIIRAWEB0QHjoECAAQRzoHCAAQFBCHAjoCCAA6BggAEBYQHjoICAAQFhAKEB5Qti9YwURgkkloAHABeACAAUWIAbcEkgEBOZgBAKABAaoBB2d3cy13aXrAAQE&sclient=psy-ab&ved=0ahUKEwit876ti4XrAhUil3IEHa72BuMQ4dUDCAw&uact=5

• Stopping plaquenil (hydroxychloroquine) January 2020 – Because of long-term effects on my eyes noted around November 2019, I had to stop taking the medicine I’ve been on for over 20 years. I was told by my special ophthalmologist that “the lights won’t go out”, but stopping the plaquenil would slow the progression of possible partial loss of vision. It was hard to not have this “crutch” that, up until last year had served me extremely well and been my only consistent medicine (other than prednisone) to manage my lupus. (I will eventually describe this, but here is a link to a Google search I did for my particular situation).
  • https://www.google.com/search?sxsrf=ALeKk03KgKashV-PpDR0yJ9bfG1l9JHlTw%3A1596664846062&ei=DiwrX6W6A6iFytMP0PyJ6AY&q=rpe+detachment+and+plaquenil+and+lupus&oq=rpe+detachment+and+plaquenil+and+lupus&gs_lcp=CgZwc3ktYWIQAzIFCCEQqwIyBQghEKsCOgQIABBHOgUIIRCgAToHCCEQChCgAVCblwFYpaEBYIykAWgAcAF4AIABXYgBwQWSAQIxMJgBAKABAaoBB2d3cy13aXrAAQE&sclient=psy-ab&ved=0ahUKEwil-eWHiIXrAhWognIEHVB-Am0Q4dUDCAw&uact=5

• COVID-19 – As many immunocompromised people who have been managing illness for a number of years, I felt ‘prepared’ to protect myself from contracting COVID. When anyone is sick at work (or anywhere around me) I’ve always kept a distance, washed my hands consistently, and otherwise been cognizant of exposure to communicable illness. Perhaps it is a function of that, as well as generally being a “homebody”, but staying at home is not a social problem for me. I don’t NEED to go out to socialize, even though I know cabin fever has set in for many people. I am glad to be moving, relatively free of physical ills to live my life relatively safely. However…my frustrations are many:

• It’s been said…it’s not about YOUR discomfort, it’s to protect yourself and others. I don’t care if you feel fine! You may not know you are a carrier. You can be asymptomatic. Your choice to not wear a mask (say, in a store where it CLEARLY says you need it to enter) is a sign of disrespect and selfishness. There are people around you (like those managing chronic illnesses and those who are immunocompromised) who will be affected and potentially die because of your choice. There are many options for face coverings; do the research and find the one you like and can “tolerate”. I don’t want to die because of your discomfort. None of my people (i.e. chronically ill, immunocompromised) want to die because of your discomfort. 
• I have been so angry listening to people talk about their rights to refuse to wear masks and throwing tantrums in stores. I choose not to go to stores primarily because of this stupidity, but I also have the luxury to order my essentials from home and to work from home. Many of us CANNOT stay home, and are trying to stay as safe and healthy as possible. 
• I can gripe more about this issue….but I won’t.

• Is anyone else ASHAMED that we have not gotten over the first wave after six months? Is anyone else TIRED that because people do not heed the warnings that we will be in this for the long-haul? I understand people want to go out. I understand people want to socialize and live life as they had before. But this is not our current reality. Be flexible, which is something people who manage chronic illnesses have learned to do over time. Yes, many people are new at this, HOWEVER, you MUST learn to adapt. You MUST learn to listen to REAL EXPERTS! For the love of humanity…

• (Hopefully) full recognition of the barriers and need for equal and comprehensive medical care.
• Whether it is because of my personal health issues or my professional life trying to find ways to help people manage chronic illness (I guess that makes it personal, ha), I have known for years that being informed about how to take care of people is not and should not be solely on the shoulders of the “patient”. It takes:
  • Individuals (yes, the patient should feel empowered – this is a much larger discussion)
  • Family and Friends or other loved ones
  • Institutions – Wider community, resources, ACCESS (community design etc.), hospital management, staff, doctors, EMPLOYERS
  • Policy – ACCESS. HEALTH EQUITY. BASIC CARE FOR ALL PEOPLE

• The Stress of 2020
  • Stress can exacerbate flares (at least that is something I’ve learned for myself). I have learned to meditate, to take time off, take more rests etc. over the years, but it has been hard in 2020:
    • COVID: (check)
    • magnifying glass on racial inequities in this country: (check)
    • highlighting the failure of the ‘system’ at multiple levels to acknowledge, address, and make change (check)
    • Everything else…(check check check check…)

I have so much more to say, but I was moved today for multiple reasons, including taking part in numerous discussions about societal inequities, poor access, lack of resources or confusion about how to access programs to help in hard economic times, having a disability (invisible or not) etc.

I hope everyone is doing well: managing ok and taking things day by day as you can. I hope if you were affected personally by COVID, that you are ok and taking steps to recover or grieve. I hope you are able to find the resources you need, be it financial, emotional, informational or medical.

While the current times are frustrating, and very hard, here’s hoping that there are good things happening in the background and that our resilience will shine through.

Peace and love.