September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

January 11, 2020 - Keep going...

By | Published Saturday, January 11, 2020


I heard big news from my appointment with Dr. Margolis (vision therapy) - I no longer have the diagnosis of convergence insufficiency!

He did a couple very specific motion tests, and said that the reason I still have trouble - for example, with reading - is because my visual vestibular integration is still giving me some trouble.

He's worked with me for a long time now, and says that there's been overall steady progress. He pointed out some of the ways in which I've made progress -some more obvious like glasses, and some somewhat less obvious like how will I tolerate something.

He also said that it's important for me to do work at home. He said even a few seconds of something matters.

It's hard to be traveling such a long, slow road, but if I hadn't kept going, I wouldn't have gotten to the point of him saying that my convergence insufficiency diagnosis is over. I still have work to do, and feel like I owe it to myself to keep going. I realize that I'm very, very fortunate to have the support to keep going.

I don't want to be so glued into doing vision therapy that it prevents me from doing something else, which would mean taking an occasional week off. I feel like taking breaks with such long term neurological rehab is important for my mental health.

I still have my vertiginous migraine disorder, which presents sensory problems, and I still have PTSD anxiety/depression. But it's incredibly encouraging to hear that something that I didn't think would be fixed - I mean, I've been doing VT for 6 1/2 years! - has been.

To anyone out there reading this, who's also traveling a long, tough road... find people to encourage you, and don't give up on yourself.


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December 14, 2019 - Taking stock... a lot to be grateful for

By | Published Saturday, December 14, 2019



What do I know for sure?

1) I got sick eight years ago. Here's a link to my piece with more details about my journey -
https://visiblepersoninvisibleproblem.blogspot.com/2018/10/october-24th-2018-my-timeline-of.html

2) I am always learning about my various invisible disorders - management, etc.

3) I have to limit my screen time - for example, check my e-mail once daily (unless truly urgent), limit my texting, etc.

4) Comparing myself to others has limited value. Seriously, there are millions and millions of people in the world – of course there's someone out there better off than you, and worse off.

Medically speaking, comparing myself to myself earlier in this journey might be valuable if I can learn something.

As a person, comparing myself more generally to myself might be helpful when thinking about what I really care about. For example, I loved the connections I had with other people through my musical world. Having connections can come from other sources.

5) there is value in asking myself "am I still getting something out of my therapy?". This question applies to each of them. If I'm still noticing change, something different - in a way that impacts my life positively - even if it's not BIG, the answer is "yes". Because this means my brain is learning. That's what brain re-training is all about - learning.

6) There's a lot that I don't know for sure. Life is full of uncertainty, and it's actually better, I believe, to recognize and accept that.

7) I want to try to enrich my life where and when possible. Trying out volunteering at our local food pantry, to see if that's a good fit. Trying out some kind of volunteer project at Dr. Margolis' office.

8) that I'm determined, tenacious, a good problem solver and intelligent. Whenever my life presents difficulties, challenges, I use these qualities to approach whatever is happening in my life. As cliché as it sounds, it really is true that every time I encounter a difficult stretch in my medical journey, I build self resilience.

9) I have disabilities.

10) I am strong and compassionate.

11) I have a family who loves and supports me.


12) the sun will rise and set each day - hence the pictures with this piece.

13) I have a lot to be grateful for.

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December 7, 2019 Still here

By | Published Saturday, December 7, 2019



If you know me, you know I love cats and dogs. As a child, I had a beautiful, wonderful cat named Poppyseed (Poppy for short). As an adult, I always wanted to live someplace where I could have a pet again. When our daughter Leena was five, and our daughter Cara was nearly three, we got Goldy. His picture got top billing for this piece.

When we had to put Goldy down five and a half years ago (wow, hard to believe), it was after taking good care of him as his health deteriorated due to liver cancer. It was very difficult to say goodbye, but we did - our vet was wonderful.


Maisy 

One month later, we found - or rather, Maisy found Leena, at our local pet shelter. We still had Cosmo, my 12 1/2 year old baby boy. We also now have Molly.


Cosmo

Whether it's the loss of a family member, a friend or a pet, loss is never easy. But we go through the process of saying goodbye. I've thought about this process a lot lately, in terms of my health situation.

Molly

I've shed plenty of tears, and have shared some of my moments of sadness through my writing. But loss due to chronic conditions/disorders is very different than losing a loved one. While there are moments throughout each day that remind me of my various disorders, there's no definite ending.

I know that while Goldy is dead, I am not. I am very much alive. I am changed, but I'm alive. I am angry about what happened to me, but I am here. I'm angry at some doctors who did not do right by me, for whatever the reason. I need to give my anger space to breathe when I feel it, just as I do my sadness. But I also need to give space to everything else I feel.

I need to live my life always thinking about my disorders, making choices due to them, each and every day. But I still need to live my life. And I need to really see, hear, live the person I am, who is still here. At my core, that person was there eight years ago, and is still here. I need to pay attention to that person I am, who continues to grow, to be.


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