Lessons learned from 2020

So it’s once again time for A Chronic Voice’s monthly linkup. This month’s words are beginning, symbolizing, enduring, revealing, gracing.

As it is January, I’m going to write about the concepts these words bring up for me and what lessons I’ve learned from 2020.

Beginning the new year with new medication coverage

The headache started in August 2019, and I don’t think I’ve had more than a few hours without it since then. The medication the neurologist recommended for me has helped decrease the intensity, but we haven’t been able to break it yet.

I started Botox treatments about nine months ago, despite my insurance being a bit ridiculous about the pricing (over $700/round). My neurologist found a workaround for me, but we couldn’t find an affordable way for me to try the newer medications that he thought might help me.

With Covid-19, one dose of Botox was delayed, and it left me appreciating how helpful it was. The other available medications are ones that I can self-administer, so I don’t need to worry as much about those appointments.

I use Medicare and distrust Medicare Advantage, so my basic insurance each year is original Medicare.

However, I do change my medication (Part D) coverage every year.

The process is a bit of a headache, but it allows me to choose plans that make my medication as affordable as possible.

When I went through the selection process this year, I put in all the migraine medications my doctor thought might help.

I found a plan that covered most of them, charging only $40 to fill a monthly prescription, when my previous plan would charge $315 for the cheapest option.

So this is going to be the year of medication trials.

My first priority is the migraine medication—there’s an oral form I’m trying first (my pharmacy should already have the prescription), and if I don’t have a bad reaction, I’m going to try the injectable forms.

Once I feel like that’s sorted out, I may also experiment with my antidepressants. I’ve had almost no sexual desire for the past several years and I miss that aspect of my life.

While there are several possible causes, antidepressants are generally known for decreasing libido, and I’ve been on the same antidepressant for most of the past 15 years. I know it’s helped, but I’m simply unsure how much I need it or if there isn’t another medication that might help me and help me reboot my sex drive.

It’s probably time to at least look into trying something new.

My goal is to find the right medication mix this year so that next year I can hopefully find a cheaper plan (I’m paying nearly $100/month for this plan, when I usually pay under $30/month) that precisely covers the right medications for me.

In the meantime, this plan is still a deal, since paying $140/month for the plan plus the new migraine medication is still way better than paying $345 (or more) each month.

I’m grateful to have this space to experiment with my medication, and hope that it will help me improve my quality of life even more!

Symbolizing rebirth

Following many pagan traditions, the winter solstice is often seen as a time of rebirth. The old Sun (very often a deity) dies, and the new Sun (often that deity’s son) is born.

Christmas is really built on that same idea, with the date having been shifted when we shifted to the current calendar system.

Our New Year’s celebration and timing is likely related as well.

Turning the page on the calendar, adding another year to the count, this time is often used as a symbolic clearing of the slate and an opportunity to start again at whatever you felt should be done better this time.

While last year I was just focused on continuing to post, this year I am ready to work on selling my support programs.

Many people make New Year’s resolutions and other such commitments to themselves to improve their lives in one way or another.

I’m certainly not exempt from this, as even in this post, I’m writing about resolutions and new goals and commitments I’m making to myself.

As a coach, this is also, in theory, one of my best times to find clients—as other people are also committing themselves to creating a better life or improving their own situation. That’s what coaches and many other service providers are supposed to do!

So coming out of a tough time of year for me, I’m trying to prepare a big sales season so that I too can find a few people who are trying to improve their lives and help them do so!

While it’s technically possible for anybody to commit to themselves at any time, there is this societal push this time of year to commit to self-improvement, and that is a unique annual event.

While I’m sure some people find that pressure exhausting or disempowering, I know that there are also many folks out there who, like me, try to use that social pressure to commit to some improvement.

I suspect the reason why so many people fail to make good on their new year’s resolution(s) is that they are often too big and/or too nebulous. For example “live healthier” or “lose weight” really aren’t so useful as goals because how do you know if you’ve done it?

I like the idea of having SMART goals (Specific, Measurable, Achievable, Realistic, Time-bound), and feel it is a reasonable model.

For example, one of my goals is to have a new blog post published every Friday for as long as I run this blog. So far, I’ve managed it, but with the way my FND works, sometimes that’s a stretch goal (so all I get done that week is the post) and sometimes that’s just a small part of my achievements for the week.

With our community, it’s not always useful to have time-bound goals, but sometimes that’s one of the best ways to focus yourself. I would suggest, though, that you pick one specific thing to focus on, and let that be the thing that will help you most improve your life.

For example, getting affordable insurance or applying for charity care may help you a lot more than trying to earn money to pay excessive medical bills.

You deserve stability, and the more reliable and manageable your income and expenses are, the better chance you have of reducing your stress and improving your quality of life.

So with this new year, what reasonable goals can you set for yourself?

Enduring the self-doubt

I have been primarily supported by SSDI through most of my adult life.

I’ve created two businesses, taught at community colleges, successfully completed graduate school, and have been doing this blog for almost three years.

I’m still afraid.

I’m worried I won’t give helpful advice (although every conversation I have with a client or potential client seems to be very helpful for them).

I’m afraid I’ll never earn much of anything (despite having several clients under my belt).

I’m afraid that I’ll earn too much and mess up my benefits (despite knowing the rules and having multiple plans on how to manage my income).

I’m afraid nobody will read what I write (even though I know that there’s a growing number of folks—including you!—reading my posts each week).

Despite my fears, I’ve kept going.

Despite my fears, I will keep going.

I try to keep improving things.

I hope my writing is improving. I know that I am offering more services and supports, and feeling more confident about what I’m offering. The challenges this year have left me with a higher level of anxiety and has forced me to dig that much deeper to keep finding hope for myself and our community.

I want to feel closer to my readers, and better understand what you want and what I can best offer you.

I want you to feel better understood by me and to know that you can count on me to provide you with the information or support you need.

When it comes down to it, I really want to help others dealing with disabling conditions to feel better understood, more self-assured, and better prepared to manage the challenges we face.

What can I do to help you? I’m getting past my own self-doubt and fears—how can I help you through yours?

Revealing my next step

As this is coming out on New Year’s Day, I want to share my plans for the new year! I’m proud to have more business-oriented goals now, rather than just personal.

I’ll be doing a talk/presentation on January 19 at 7 p.m. While I am not positive about the title yet, the talk will be about using the uniqueness of your situation/diagnosis as a tool for getting the right medical care.

My focus for the moment is on finding new clients for my medical care coaching program. As a small business creator, it’s always important to have goals, and so my goal is to find two or three clients for this larger program, or at least two or three new clients a month for my social welfare support program.

I’m grateful to have my SSDI as a reliable source of income, but I would love to be able to support myself independently, or at least have some extra income so that Al and I don’t need financial support from our families.

In the meantime, I always want to provide quality free support, both in the form of these posts and in whatever other ways I can (like my talk later this month).

I’m hoping to be able to create more helpful online courses and provide free and/or affordable support to help you create your best life with your condition.

Honestly, there’s been a fair amount of proof that people use support more when there’s a financial commitment.

I want to help people actively improve their lives, and while I understand that many of us are struggling financially (which is why I want to price my offers affordably), I also want to help folks actually take the steps they need toward success—which means having some cost attached to much of what I offer.

My blog posts are designed to help and give guidance, and let you know that I care, know what I am talking about, and am committed to helping. But if you need more, I want to make sure that you commit to those next steps—so ask you to put some money down to get yourself to that next step.

What I do try to do, though, is keep my price reasonable.

For my support for assistance programs, I’m asking for much less than you’re likely to save in your first month of support. I know that often the biggest challenge for these programs is convincing yourself to apply because of all the shame often associated with it.

My goal is to help you get past that so that you can get the help you need.

My program to help people with SSI or SSDI is less than half of the lowest first payment you’d get on SSI (SSDI generally pays more), and way under the amount of income a person could earn without endangering their benefits.

My newest program for managing medical care is still less per month than an appointment with a specialist if you are uninsured and less than many forms of diagnostic testing.

With the goal of the program being to streamline your medical treatment process or get through a complicated and/or emotionally intense medical procedure, I’m sure many folks will find it well worth the financial and emotional investment.

I’m hoping to develop more online courses related to medical care and how best to use the social welfare system.

I think it’s deeply important to understand these things and to be able to adjust your mindset to best improve your chances of being happy with yourself and your life.

I hope you’ve been enjoying my work and are ready for more!

I’m open for feedback and requests, so please feel free to let me now what topics you might like me to talk or write about in the future. And feel free to join my email list so you don’t miss anything I may have to offer!

Giving myself grace (I encourage you to do the same)

Giving grace is a very important concept for me, and something that’s deeply important within our community. My ability to give myself grace is improving each year as I continue the practice.

What I mean by this is very simply holding flexible expectations for yourself and being truly okay with not meeting all your goals or deadlines (and sometimes not meeting any of them).

Most disabling and/or chronic conditions have a great deal of uncertainty tied in with them. Not only are our bodies and/or minds less reliable than the average person’s, but also that degree of unreliability is also often varied.

I know that I have good days/weeks/months and bad ones and that my definition of “bad” and “good” also can vary dramatically over time.

I suspect that’s true for most of us.

If I tried to hold myself to any of these standards consistently, I’d be disappointed (and occasionally feel like I wasn’t doing enough), so instead, I create overall goals and rough deadlines, but enough space to be okay if a deadline flashes past or I don’t quite reach my goal.

I also have a mental “ideal” and “good enough” for much of what I do. For example, early on I resolved to myself that I would get a post out every Friday, no matter what. I have. I have had a post completed every single Friday since I started my blog in early March 2018.

The quality of the posts have varied over time, all being the best I could do at the time, but the details have varied.

When I’ve felt very traumatized, I’ve written specifically on that subject (for example, my constant migraine triggered a visit to the Emergency Department, which got a very long very lightly edited post due to the migraine), while other times, I’ve written on topics I felt were necessary or useful, with lots of detailed links to additional resources.

I let my needs and experiences guide the post topics, figuring that if I’ve had to deal with it, others likely have too.

I try to follow up my emotional writing with more educational posts on the topic (like the series of posts on emergency room trips that I put together about six months after sharing my ED trauma).

I don’t always try to do it right away because sometimes I need that recovery time to process what happened, or simply to recuperate from associated events.

In the case of the migraine issues, I still have a constant headache, but with my medications, I’ve been able to shift it from an almost constant 4 to now mostly being a 2 or 1.

The six months between my ER trip and my writeup series was mainly because the headache was so constant and it took that long to mentally and emotionally adjust to it enough to feel okay to do the deeper research needed for that particular series of posts.

This past year, I’ve struggled some because the Covid-19 pandemic took away some of my usual self-rewards and some of the stresses I’m used to having.

I’ve had to give myself grace and understanding about a lot of things, including my multiply-increased anxiety and my (self-percieved) lack of drive to take next steps.

I chose to push myself a bit by investing in a coach for my business, but made sure to recognize the progress I was making and the stresses I was managing.

While I’m not where I hoped to be, I’ve definitely been making progress and continuing to make progress with this business and my health.

I’m proud of myself for how I’ve done, which is much healthier than if I felt bad about not quite reaching my goals.