Site Changes and Life Updates

It’s been quite a while since I’ve published a new article here! There are many reasons for that, from a long period of extended illness (which seems to be getting under control now thanks to a change in my treatment) to sudden and very exciting new life changes that I am eager to share with you now!

I have a lot to catch you up on, so I’m going to keep this as brief as possible.

The extended illness I mentioned was tied to my hormone replacement therapy, which had apparently not been adequate for a while. Namely, my gonadotripins– the hormones that regulate your sexual health (including menstrual cycles). Normally, birth control is prescribed because it is an effective hormone replacement tool that also regulates menstrual cycles very well. I had been taking birth control for years, but I started experiencing uncomfortable symptoms that seemed to be caused by the pill.

I asked for a change in treatment to check and see if I would do any better on individual synthetic non-contraceptive hormone pills, estrogen and progesterone. Unfortunately, the pills I started taking to replace the contraceptives were apparently not adequate enough. I experienced major bouts of fatigue and weakness, and I was not having regular periods. After my body started skipping my cycle altogether for months at a time, I decided to try birth control again because it had worked in the past, side effects be damned. The symptoms I was experiencing without the pill had been much worse. After an initial period (I am not sorry for the pun, thank you) of discomfort and increased fatigue as I started on birth control again, my body started to adjust, and my overall feeling of well-being improved! I started noticing a difference in my daily energy levels, and I was able to increase my physical activity enough to stick to a healthy exercise routine most days.

I literally just finished a telehealth appointment with my endocrinologist before finishing this article, and he says my lab results show my levels are looking good! Woohoo!

I’m dealing with an acute illness right now that has had me stress dosing since last Thursday, but things seem to be improving slowly but surely, and I think I’ll be back on my feet again fairly soon. Other than this minor stumbling block, I am feeling a whole lot better overall and I intend to use this energy for good!

That leads me to my next announcement!

Some of you who have been following me online for a while are already familiar with my advocacy and awareness efforts in regards to chronic invisible illnesses, disabilities, and rare diseases including my own.

Since I started feeling better, I began increasing my activity within the rare disease community at large by seeking more involvement in activism on behalf of the National Organization for Rare Disorders (NORD), which is a nonprofit I have been supporting all throughout my journey as a patient advocate. I signed up for a virtual discussion group being hosted by their Rare Action Network (RAN) division in my state, and not long after I met our Indianan RAN state ambassador, they asked me to join the team!

It was one of those situations where I found myself in the right place at the right time. They had an opening for a leading volunteer position, and they apparently liked my gusto at that discussion group. I was happy to accept, and now I’m the official Community Engagement Liaison for Indiana RAN! Basically, I’m in charge of helping to raise awareness and organizing grassroots efforts to support causes which impact the rare disease community. It’s a lot of the same stuff I had been doing on my own for years, but now I am an official volunteer for NORD via RAN, and that will enable me to be a way more effective advocate! I am honored an excited to be a part of this team!

Since a lot of my volunteer work for RAN centers around working with my representatives to support rare disease legislation, I decided to also get involved with another group where that is their main focus. I signed on as a volunteer for Rare Disease Legislative Advocates (RDLA) and I’ll be participating in Rare Across America, which will enable me to meet with my representatives and discuss rare disease legislative causes that are important to patients like myself. I’ll get to share my personal story living with rare diseases and hopefully build some empathy that will help them decide to support key rare disease legislation.

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I’ve also been volunteering on for the Pituitary Network Association as a patient advocate resource as well as moderator for their Facebook support groups. I’ve already got a lot on my plate right now, but we’re discussing some potential webinars I might be able to host with them! I’m really looking forward to doing this, but that might not be for a little while so I’m not spreading myself too thin. Once Rare Across America concludes, I should have more time and energy to dedicate to helping PNA with more of their activities.

I also plan to write more!

I haven’t written many articles here lately, and I intend to change that! I’ve also started cleaning up around my site to make it more clearly a blog for rare disease and chronic invisible illnesses, so there have been some slight changes in design. I’ll probably continue to nitpick until I get things looking the best I can, but that’s not my top priority right now. I am just going to try to keep things more up to date on here and keep you all posted on my activities!

That’s all I’ve got for now! I hope you’re all staying safe out there! ❤

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