Saturday, June 26, 2021

One Small Step

Like so many others in the chronic illness community, I've been super anxious about going anywhere in public. Especially as everything is opening & mask mandates are dropped (prematurely, if you ask me), there's the legitimate fear that the unmasked all around us may be unvaccinated, exposed, even carriers of the coronavirus, and we the immunocompromised are at even greater risk.

At the same time, there's the hope & the longing to get back out into the world. We don't want to live like this, as hermits, going nowhere but to our medical appointments. We want to see our loved ones, our friends, our families. We want to go out, to socialize, to run errands, to just … be.

And we don't want our loved ones to keep missing out in order to protect us. We know that they take extra precautions for us. They run extra errands because we can’t (not to mention all the extra they’ve done since we got sick or disabled, long before this virus even existed). They avoid gatherings that might be safe for them, because they wouldn’t be safe for us. They don’t plan vacations, because it is not safe enough for us to travel. They don’t make plans with other couples, because even that feels too peopley for us. We know they don’t mind; they feel we are worth the sacrifice. Whether they admit it or not, we know that it really is a sacrifice … and though we often feel guilty for that, we are also incredibly grateful.

But the world is scary right now, and I think we're all trying to find our place in it.

So I took a step today. Hubby & I went out to eat - at a restaurant with an outdoor seating area, one I know has taken precautions to keep its staff and guests safe during this time. I still had my face shield and mask (a simple one, but still matching my tank top, sweater, and cane scarf, of course … and though it’s all faded now, there was a time when my hair matched this ensemble, too 😘). It was more crowded than I had hoped, but still mostly socially distanced.

It’s such a weird space right now. For just a fraction of a second, part of me automatically falls back to the comfort I’ve had in this type of environment for the first 45 years of my life. But then I catch myself, and panic.

I can’t get comfortable, it’s just not safe. Look at all these people, laughing, talking, breathing their germs all around … and did that breeze just send their germy breath over here from its original six feet away?

But I catch myself again; I’ve got to rein this in. It would be so easy to let my head spin out and get consumed by these thoughts. Instead, I put my mask back on after we’ve finished the guacamole, while we’re waiting for the plantains. It’s the one thing I can control in that moment. And I look around again, reminding myself that everyone else really is several feet away. If hubby can barely hear me talking just from the other side of the table, then perhaps the breath of people 2-3 times as far away won’t really be coming for me - at least that’s how I’m trying to rationalize.

I’m not going to pretend that the rest of the day became as easy and carefree as pre-pandemic, but there were some moments I really got to enjoy. A toast with my husband, to taking this step, knowing there are more steps to come. A delicious meal, and the look on hubby’s face as each item arrived (especially the “secret” lobster taco). And best of all, the smile on his face when he looks at me, filling me with love, gratitude, and hope. It’s that hope that will get us to the next step, and every step after that.

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Thursday, February 11, 2021

Vaccine Variables

Graphic shows NY/DOH logo, with the Q: When should I get the vaccine? and the A: As soon as it's available to you. The DoH will continue to share information on where and when New Yorkers can get the vaccine as more vaccine doses become available.
A few days ago, they announced that in NY, people with a list of conditions would be eligible to receive the vaccine as of February15. I meet a few of those criteria, so I’m certainly eligible.  My rheumatologist said I should definitely get the vaccine, given that I'm immunocompromised and high risk for not only contracting the virus, but for a more severe outcome if I do.  So I was excited about the announcement, thinking I could get my first dose next week, and be one step closer to feeling safe.

As I started looking up where I could get the shot and how I could schedule the appointment, I came across an FAQ page that included the question "Are there any reasons a person should not get vaccinated?" As expected (and as is the case with most medications), this was broken down to the “you should not get vaccinated if …” list, and the “consult with your doctor if …” list.  Included in that second list, I saw “people who have been treated with … intravenous immunoglobulin (IVIG) in the past 90 days.”  Yikes!  I was looking all of this up from the #infusion center; I was literally getting my IVIG treatment while reading that my IVIG treatment might keep me from getting the vaccine.  I kinda freaked out a bit.

I reached out to my neurologist, hoping she would say that it was ok for me to get the vaccine, and I’d be good to go.  Unfortunately, it wasn’t that simple.  She said that IVIG could interfere with the formation of antibodies after the vaccine, but she felt that 90 days before and after was too much.  Her suggestion was to allow 30 days before and after the vaccine, thereby only skipping one round of IVIG. However, even that was too simple to become my reality.

Photo of me at the infusion center, wearing a floral mask and clear face shield, holding up my arm with an IV line and hospital bracelet

One problem with that suggestion was that we’d recently switched my treatment schedule from 4 days every 4 weeks to 1 day every week.  We made that change in order to make the treatment more tolerable, as I’d been having severe headaches after my treatments, and my blood pressure was getting higher and higher each day with the infusion. But in order to get a full dose of IVIG before the vaccine, I’d have to go back to 4 consecutive days, even if just for now, then wait a month for the infusion, a month after that, and then back to my weekly infusion schedule.

But again, that was too easy to work out that well.  I asked at the infusion center if we could make this change, and set me up for 4 days next week, so at least we could get this process moving.  Unfortunately, they had no availability for the extra 3 days next week. No luck for the following week either.  Fully booked through the end of February.  I asked if we could do it the first week of March, and they were unable to tell me yet – they’re still working on that schedule.  I’m currently waiting on a phone call to let me know if/when they’ll be able to get me in for 4 consecutive days.

So now instead of getting the vaccine next week, I’m hoping that I can get it a month after 3 weeks from now. And since it’s not just one dose, that means skipping more than one round of IVIG, too: it’ll be a month before the first dose of the vaccine, then a month until the second dose, and then another month before I can get back to my weekly IVIG infusions.  So if all goes perfectly from this point on (hahaha), I won’t be fully vaccinated until May, and will have to go 3 months without the treatment that has been really helpful for me over the past year.

Naturally, I’m disappointed that it will take so much longer than expected, and I’m definitely worried about going so long without the infusions. But what’s so frustrating is how uncoordinated the whole thing is; how poor the planning, how minimal the information sharing.  Since the previous administration had no national system, the new administration is just playing catch up, and as it trickles down to the states and localities, it feels like some decisions seem to be made on a whim.  If they’d laid out a plan for the phases of eligibility, then I could have planned accordingly.  If I’d known a month ago that New York would open it up to people under 65 with certain underlying conditions on February 15, I would have planned for it a month ago, doing that full week of IVIG back then, so that I could schedule my first dose of the vaccination for next week, rather than hoping I can get it nearly 2 months from now.

What that all leads me to, beyond myself, is how many other people living with chronic illnesses, immunocompromised by their conditions and/or their treatments, are in the same boat as me.  It upsets and angers me to think of the thousands (or millions) of people who have been living isolated for nearly a year, basically told they are expendable, waiting on pins and needles (literally!) for the chance to feel safe again … only to learn that they have to wait another month or two.

More than that, I worry about the thousands (or millions) of people living with these conditions who might not take the extra steps of reading the fine print, of reaching out to their doctors.  If they simply take the eligibility date and schedule from there, their current treatments may interfere with the desired activity of the vaccine, making it less effective (or ineffective).  That would leave them with a false sense of security, making them even more likely to contract the virus when they think they are protected from it.  That would be extremely dangerous not only for them, but for anyone else they may unknowingly spread it to.

So where does this leave us?  For me, it leaves me disappointed, frustrated, upset, angry, worried, stressed, and probably a few more emotions I can’t even think to name at the moment.  But for you, it leaves me sending out this info, this warning, this plea, to be sure to read the fine print: check to see if your conditions or treatments may have any impact on the vaccine, or on its effectiveness. Consult your doctor to see if you need to do anything differently before you can get the vaccine.

Close photo of me holding my hand up in a peace sign, wearing a mask that reads PEACE, LOVE, SANITIZE

In the meantime, it leaves us all with the basic precautions: wear a mask (or two), stay socially distant & avoid crowds, wash your hands (a lot) and/or use hand sanitizer (a lot).  And while we may be isolating because we don’t feel safe going out into the real world, don’t forget that connection is still important.  We’re so fortunate to be living in a time when technology offers us so many opportunities and ways to connect.  Read a blog, join a group, zoom a zoom … just know that despite how lonely it may feel at this time, you are not alone in this.

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Monday, October 19, 2020


Photo of my hand, writing on a spiral bound journal; next to it, a coffee cup with a peace sign on it.
This is not what I wanted to write.

I was actually planning to write a blog this week (yes, I know, it’s been over a year – I’ve wanted to, a lot, but … well … life gets in the way).  But this week was actually 5 years since I was first (finally) diagnosed with sarcoidosis, and I wanted to write about what that diagnosis has done for me, and how much my life has changed since then.

But alas, life gets in the way.
More accurately, #SarcLife gets in the way.

While people around the world have been hunkering down at varying levels due to the pandemic, those of us with chronic illnesses like sarcoidosis, arthritis, and thousands more have had to take more drastic measures due to our compromised immunity and higher risk for not only contracting COVID-19, but more severe outcomes if we do.  My primary doctor’s way of putting it to me: “the only thing we have right now is extreme social distancing [and masks, and hygiene], and for you, that means extra extreme.”  For many of us, in addition to avoiding social situations and switching to shopping online whenever possible, that also meant postponing non-emergency medical appointments.  That’s kind of a tricky thing, though, because the main way many issues stay non-emergency is that we maintain routine monitoring & care.  Additionally, it’s one thing when these issues get held off for a month or two (like we initially thought corona would last); when it’s looking more like a year or more, that is really too long to wait.

So I’ve started to schedule some of these other medical appointments, and over the last few days, it all just caught up to me.

On Thursday, I had a Physical Therapy evaluation for myopathy.  I generally say that I’m a walking, talking, disaster mess, so I expected the evaluation to show that.  Seriously, it’s not just like one bad area – it’s my arms, and my legs, and my neck, and my back – weak muscles everywhere, so we really need to work on strength & endurance.  But there’s also a 6-minute walk test, and that threw me a little.  Or a little more than a little.  It wasn’t just getting tired (and the PT kept reminding me we could stop any time I needed to), but my breathing that really seemed worse than I’d realized.  I know I get short of breath easily, and that it takes a while to catch my breath again … but this just felt even worse than usual.  And seeing the PT so concerned kinda reinforced the idea that this is really bad, not just my imagination.  Prior to this, I’ve said that though the sarcoidosis is in my lungs – which helped lead to the diagnosis – that’s actually the area where it affects me the least.  My biggest problems have always been musculoskeletal; more recently, it’s gotten on my nerves with small fiber/autonomic neuropathy (see what I did there 😉).  But now my breathing has really become a problem.

On Friday, I had my (long overdue) annual physical.  I had a list of things to tell my doctor about – things that are being addressed by other specialists, things that need to be addressed by other specialists, things that we don’t need to do anything about now, but I’m just keeping him informed (which, of course, turned into something that needs to be addressed by another specialist).  I left that appointment with 2 referrals and a lab order (plus a reminder to schedule a follow-up with another of my current specialists).  And as we made the appointment for my 6-month follow-up, I laughed a little (and cried a little) thinking about how many times I’ll have to reach out to him before that appointment comes.

Over the next month and a half, I’ve now got appointments scheduled for my rheumatologist (arthritis, fibromyalgia, & sarcoidosis), endocrinologist (Hashimoto’s thyroiditis), neurologist (small fiber/autonomic neuropathy & headaches), mammogram, cardiologist (that breathing thing), weight management doctor (body by prednisone), gynecologist (issues), dermatologist (cutaneous sarcoidosis), and pulmonologist (pulmonary sarcoidosis) … not to mention IVIG infusions 4 days every month (~9 hours each day), therapy weekly, and now physical therapy twice a week. And of course, we’ll have to add any additional testing or follow-ups that these doctors want to do (there are a few things I’m expecting, but also expecting the unexpected).  As if that weren’t enough, I got a message from my doctor yesterday afternoon: based on the results of Friday’s blood work, he wants me to repeat some of those labs, and also get a sonogram.  Great.  Something else.

It’s … a lot.

And it’s got me feeling a bit overwhelmed.  Or maybe a bit more than a bit.

Now this is the part where I’d usually turn things around, where I’d find the silver lining, talk about the good that has (or will) come out of all of this.  But I don’t want to do that today.  I’ll be ok, I’m not too worried, really.  Most importantly, I know I’m not alone in this experience, and I’m not alone in feeling this way.  I know some of you have been there too.

And that’s why I’m not going to jump right out of this feeling.  Of course I’d rather be beaming out rainbows and buttahflies; it’s my natural state as a happy hippie.  But even I have my moments – no one can be that happy all the time.  And that’s ok.  I think that’s really the part I needed to get to, the message that I need to convey, both to myself and to you: it’s ok not to be ok.

We’ve got to break free from the stigma that surrounds mental health issues, from the negativity about negativity, if you will.  Everyone goes through periods of being more down than up, and those of us living with life altering, sometimes disabling chronic illnesses surely have understandable reason to feel overwhelmed, anxious, depressed, and more (not to mention anyone with a diagnosed mental illness who may struggle to manage these feelings as well).   Where this becomes even more problematic is when we think we have to keep these feelings to ourselves, to put on a fake smile for the world while crying or screaming on the inside.  It is so important to share these feelings; whether with a friend or family member, a live or virtual support group, a professional therapist, or even a blog post 😉, what matters is that we are able to unload, to share that burden with someone we trust, with someone who can say “I hear you” and “I’m here for you.”  

That’s really what we need more than anything – even more than answers, sometimes – that connection that lets us know we are not alone, even in this … especially in this.

B&W photo shows a woman with dark hair wearing a dark shirt; white text overlay reads: Staying positive doesn't necessarily mean being happy all the time.  It just means that even when you're feeling low, you know that it will end, and that there are better days  on the other side. I TheMindsJournal

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Wednesday, October 2, 2019

Patients Need Protections in Mid-Year Formulary Bill (A2849)

For most of my life, I was an overachiever: I excelled in school, worked multiple jobs, and volunteered to help others as often as possible.  But in my early 30s, I was forced to slow down.  I began to experience a mysterious combination of symptoms that no one could explain: pain from head to toe, debilitating fatigue, weakness, dizziness, nausea, and later, severe joint swelling and a variety of skin reactions.  It took 8 years for doctors to figure out what was going on, with countless tests, misdiagnoses, and treatments that did not work along the way. Eventually I was diagnosed with a rare inflammatory disease called sarcoidosis.

At its worst, this condition left me completely incapacitated: the arthritis in my hands, elbows, back, hips, knees, ankles, and feet was so severe that I could hardly move. I needed support to stand, shower, and dress; at times I couldn’t even hold a phone in my hand to ask for help. When we finally found the right treatment, my world changed. Literally overnight, there was a noticeable difference, and I continued to improve for weeks and months. There is no cure for sarcoidosis, but thanks to my miracle drug I’m able to participate in, and contribute to, my life and my community.
My miracle drug

Wednesday, July 24, 2019

An Honor to Be Nominated

Patient Leader Hero
and Best in Show: Blog
For the third year in a row, I have been nominated for a WEGO Health Award (two, actually!).
The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. It provides the opportunity for community members to thank and support the Patient Leaders and patient-centric initiatives they admire. (
Though it sounds cliché, it is an honor to be nominated for these awards.

I say this not to brag, not even to ask for your endorsement.  I am truly grateful for the nominations, and so glad to know that my friends and fellow warriors see me this way.  That is what I’m always striving towards – not the recognition for myself, but to make that kind of impact on others who need it.  Seriously, my heart is overflowing with this idea.

But if I’m being totally honest (and what else is a blog for, if not total honesty?), what I feel most of all is … unworthy.  Perhaps in previous years I could understand the nominations, could even almost believe that I deserved them (not to win, mind you, but at least to be nominated).  But looking back on the past year, it’s just been a mess, and I don’t feel like I’ve lived up to it.