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...

Archive for 2019

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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November 27, 2019 Feeling, letting go, moving on

By | Published Wednesday, November 27, 2019





I started working with my psychiatrist, Dr. Mirsky, two years ago. It took a couple months of being on meds for me to realize I'd fallen into a deep depression. Recognizing my depression was the first step to coming out of it.

I also realized I had developed PTSD anxiety from the night I had gotten sick. Urged by Dr. Mirsky, I began cognitive behavioral therapy with Christina.


This past weekend, for a variety of reasons, was a hard one for me. When I try something, and it does not work, at first my anxiety flares. When I pull back to regroup, it's very easy to fall into depression.

Letting myself feel sad, letting myself cry, is healthy. It's only when the crying is too frequent that it's a problem.
Grieving for my losses is important, but I don't want to get lost in the grief - when lonely images start to populate my thinking, depression's setting in.

Managing all of my invisible disorders – vestibular, visual, PTSD anxiety/depression, and irritable bowel – is no easy task. Sometimes I really hate it. Setbacks are hard to recover from, and chip away at my self-confidence.


When I draw, I try to get caught up in the activity, not over think it. Take a color, put it to paper, see what happens.




I discovered that the list of activities of daily living - ADL - that I did with Christina could be added to, which surprised me. I'm lucky to be able to do a lot of basic things on my own. I also wrote up my own list of what I enjoy -


I don't want to dismiss my difficult feelings - I need to let myself register ALL of that. But it's OK to let go of them - I don't need to hold on to them. I need to also let myself keep going.



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November 16, 2019 Look what I can do! And gratitude

By | Published Saturday, November 16, 2019



During my session last week with Christina, she wrote up a list of all of the routine/activities of daily living – ADL – that I'm able to do. At the end she noted that more than half of them I am able to do without any help from Ron.

Then we moved on to a list of things that I enjoy that I'm able to do. Whether or not any of these can be expanded on I don't know. I think that doing this gave her a better idea of my daily life. It also gave me concrete evidence of how far I have come.

The buttons - plus a few bigger items - are a visual for me, of all the stuff I've done in recent weeks. Some routine, some not so much.

Since doing this exercise with Christina, I realized how much I have maintained even while trying to stabilize from my setback the beginning of October. Maintaining my ADL is a big deal.

I also remembered that when my mother emailed me that it was impressive that I had gone to a furniture store with Ron and Leena to pick out new dining chairs, I had downplayed it. But it was a big deal – difficult yes, but I did it!

I managed the Saturday a couple of weeks ago when our old living room windows were taken out, and new ones installed. Thinking through to make sure that the pets were safe, and dealing with the disruption.

I realized when talking about pacing with Ann (VT) that I underestimate what I am actually doing. Given the fact that I am living a new normal, I really need to give myself credit for all of the challenges I DO take on.

It's so, so easy to focus on the deficits, so I am going to make a point every week to focus on what I'm accomplishing.

here's some of the buttons I sorted, a visual accomplishment -

I'm incredibly grateful that my medical team - Dr. Margolis, Ann, Christina and Joyce – for never giving up on me even when I'm struggling.

Finally, I am fully aware, and very, very grateful and appreciative of the support I get from family to be able to still be traveling this medical journey of mine.



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November 9, 2019 - "me" still there, even in my new normal

By | Published Saturday, November 9, 2019



Looking back at the last 30 years, I've gotten involved, taken action:

1) I helped co-found a flute choir (Lakeside Flutes - still in existence) in 1988,

2) volunteered when my daughters were in grade school,

3) got involved in our congregation's Sunday School - serving on the Youth Education Committee for over 10 years,

4) got involved with the community band I played in after Lakeside Flutes, 

5) Got my diagnoses, and treatment - after I got sick - another form of taking action, and

6) Got involved with the Vestibular Disorders Assn. - VeDA - as an Ambassador.

In the present - right now - I know these three things -

1) my therapies are not bad for me - quite the contrary, they help me, as long as they're tailored to me. Patience also matters - speed is never a thing with neurological rehab.

2) I can't completely control (I wish!) all the factors that can impact me, bring on symptoms. I can only do the best I can.

3) Doing is important. Trying things. I still like the idea of volunteering "out there."


I need to try out volunteering in environments where I'm comfortable, where getting there is not difficult, and where I know the people will be understanding, and willing to accommodate.

To that end, I am re-approaching our local West Deerfield Township food pantry about volunteering there.

I've also floated the idea of some kind of volunteering at Dr. Margolis's office. Yes, my doctor's office.

I don't know if either of these volunteering opportunities is going to work, but I need to try.  I also don't know how my therapies and volunteering will fit together; it's going to take some experimentation. And I have to do the best I can to take care of myself.

Life can be so unpredictable. Trying things that I actually choose feels like taking back a little bit of control over my life. I believe that "me" - the one who DID all those things I listed - is still there.

My skills are still there, but my current health situation definitely complicates matters. I hope that there's a way, even in my new normal, not for what I'd once envisioned, but for something "out there."



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November 3, 2019 - My new normal

By | Published Sunday, November 3, 2019



I'm special... no really, I am... I'm part of the roughly 1% of the population that has migraine associated vertigo... when I add in my vision disorder, PTSD Anxiety/Depression, and Irritable Bowel Syndrome (IBS) - well, there's just not a whole lot of people out there with my mix of diagnoses.

I know, looking back, how I've spent the last 8 yrs. 8 yrs from now, I don't want to look back and say "well, congrats Tamar, you spent the last 8 yrs feeling sorry for yourself, and angry"... nope, life's too short for that - I don't want to get stuck in sadness, frustration, etc.... I have to do the best I can, make the most of what I've got.

I'm not really thinking 8 years down the road right now. I'll start with one day at a time... but I'll keep in the back of my mind that retrospective thought.

I'll listen to as much audio material as I'm able, which gets me outside my own head, and allows me to learn.

Make music - flute, piano keyboard... listen to whatever comes out of me.

Listen to music - there's SO much wonderful music out there, and I'm grateful I can still listen, in small doses.

Draw - when the mood strikes.

stay connected - however I'm able, with friends and family.

Write, when I have something to say - the stats I gave above may not be accurate, maybe there are more people out there suffering than official stats indicate.

How many out there are looking for answers as I once was? If I can help even one or two people with some of my writing, that's worthwhile.

Enjoy nature - I love the colors of nature - that's why spring is my favorite season when everything bursts to life. The picture I started this piece with, was taken by my daughter Leena some time ago. Lovely, isn't it?

I'll take pleasure in walks with Cosmo, and Ron, and go when possible to the Chicago botanic Garden - I'm lucky to have that gem just a 20 minute drive away.

Here's a picture from a visit this past summer -

Share info and music on my public Facebook page  - trying to spread awareness about invisible disorders – whether vestibular, visual, or mental health.

I want to try to fill my new normal with whatever purpose, meaning, contentment, joy - in bits and pieces - is possible for me.
One more CBG picture 



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October 26, 2019 - Acceptance, and perspective

By | Published Saturday, October 26, 2019



During the last eight years, I've had multiple consultations with medical professionals, and have been tested, all in a quest for answers, for diagnoses. Fortunately, I've gotten lots of info. Treatment for these diagnoses has been both meds, and various therapies. Take a look at "My story in a nutshell".

One of my diagnoses is convergence insufficiency - a vision disorder, diagnosed by my developmental optometrist, Dr. Margolis. I just recently saw him for a progress report, and he could see from how I handled his examination of me, that though I'm by no means back at square one, there has been regression from my recent setback. This didn't surprise me.

He's determined to try to still find ways to help me. He wants to try using yoke prism lenses to see if that helps my peripheral vision. I gave back the green syntonic filter lens glasses. The benefit of the green unfortunately fights against visual distortion that comes with wearing the glasses, so I don't have a net gain. He agreed this was unacceptable, but isn't giving up yet. I'll see when I have my next vision therapy session in November, what I do with Ann.
  
I next see Dr. Margolis in January, so I'll see how the next two months in vision therapy unfold.  I want to remain open  - in general, not just in VT - to possibility, to an opportunity that may present itself, that I have the capacity to explore.

But there's this sense in me, this inner voice that is saying "yes, see how these two months go... but don't be waiting on these two months like something amazing is going to happen... it's time for acceptance…". I know there comes a time when I need to say to my medical team "Enough. It's time for maintenance, and for me to see what my life looks like."  A time for me to accept, and make the best of the circumstances I have.

So I'm asking myself what I know, and what I have, right now -
Some realities -
I have disabilities - that's simply a fact, and not one that's going to change.

I need to pace myself - depending on how I'm doing, the pacing may vary – right now I have to be more careful than when I am not recovering from a setback. But I always, always have to pace myself.

I have to limit my screen time – this is difficult, and can be really frustrating in this high-tech era, but is very necessary.

Some positives -
Take pleasure in my pets,

be grateful for being able to play simply listening to myself on my flute, and on our piano keyboard.

Enjoy having houseplants - here's a picture of our aloe plant, much happier in its' new pot :-)


Be grateful I have so much audio material I can listen to.

Enjoy, and be grateful for every phone call with friends or family. And any time I can spend in person with friends or family.

Be grateful that I am physically able enough to do enough household management that Ron and I can stay in our house.

Certainly grateful that we can manage our finances sufficiently to be able to stay in our house.

We got a postcard from my daughter who is in Scotland. If it had been any longer, or her handwriting not as neat, I could not have read it myself. I had to read it more than once, but I was able to.

When I was done, I thought to myself how much perspective matters. I can be angry and frustrated at how little I can read, or I can be grateful in the moment, that I was able to read her postcard. Yes, I needed to take a break after reading it, but I was able to read it myself.



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October 19, 2019 Tiny is powerful... it all matters

By | Published Saturday, October 19, 2019




To state the obvious, experiencing vertigo doesn't make you feel safe.  Because of my recent setback, I've thought about the night I got sick. I think whenever things don't go well, I think about that. I think the opposite of feeling safe is feeling in control.

I've also thought about the losses I've had. Having a chronic illness means, for many, some loss. I'm no exception to that. Part of my loss has been a loss of connection, community. Not just the musical activities in which I participated, but also being more active with our congregation.

So how do I solve these problems? I believe the control answer comes from showing up for my therapies, and doing my brain retraining home therapy. Small bits really do matter. Baby steps. And when I say baby steps, I really mean baby steps - I found a video that does a pretty good job explaining the power of the tiny.
Here's a link - https://www.youtube.com/watch?v=VHkOFs67d9A 


So what do I do that I care about? Continuing to shine a light on invisible disorders. I can do this through my writing. I can also do this by calling new members monthly for the vestibular disorders Association – Veda.

Many times I only leave a message, but I always follow up with an email. Sometimes I receive a reply, and occasionally I speak to someone. They are always very appreciative.

I don't know what else I will find, if anything. I do know that the two things I just described – my writing, and what I do for Veda – both matter.

Community can come from a number of places. I have family, and I want to stay connected - that means attending family gatherings whenever possible, and phone calls. I also need to build on my phone calls to friends. Whenever I do connect with someone, it's a positive for both of us.

I may not always get it exactly right, when I do, when I try things. I'm not going to be able to control everything all the time, which may result in a setback. But I need to keep going. Remember that the keeping going is where I really build my strength. The coming back after a setback.


Giving myself reminders – concrete reminders of what has worked, what I've accomplished - is important. So, even while dealing with this setback - for which recovery is not an exactly straight line - 

here's a list of what I've done -

Went to a BIG furniture store with Ron and Leena to order new dining room chairs.

Did some texting with my daughters.

Went to a morning Yom Kippur service.

Walked the dog by myself.

With a shorter hair cut, I'm going for haircuts every 4 weeks.

Writing and editing this piece, in small bits.

Showed up for vision therapy. Ann said she didn't think I'd regressed from my setback, which was encouraging.

Trying out a new step in syntonics - using a special green filter at home. Here's a picture.


Started up vision therapy brain retraining at home again. A little bit, to get back on track.

Picked out the first part of the song do re mi from the sound of music, on our piano keyboard.

Taking breaks – even a minute or two makes a difference, just like the baby steps of doing makes a difference. My breaks are a time to really focus on doing good breathing.

Do something each day that matters, that I care about, that makes me feel connected. It doesn't have to be big. Tiny can be powerful.



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October 13, 2019 An informed patient, & time...

By | Published Sunday, October 13, 2019



This picture makes me think of a slow, gradual journey... 

My gastroenterologist diagnosed my irritable bowel syndrome - IBS - about two and a half years ago. I remember he explained about how the intestinal nervous system gets confused, and involved when there's migraine issues. IBS is, apparently, a common diagnosis when migraine conditions are present. This info was very helpful. I can have only mild migraine symptoms, and also have distinct IBS symptoms (sometimes in the moment, sometimes delayed).

My doctor prescribed IBGard. Unfortunately, he didn't give me any directions on how to take it. I wish I had asked more questions at the time. I have now, finally, educated myself by looking at the IBgard site, which thought somewhat repetitive, is also pretty informative. I listened, and now understand much more about IBS, how IBGard works, and how to use it.

It's going to take time for me to recover - at least a few weeks. Hopefully not more than that. If I'm not seeing definite improvement in a month, I'll contact my doctor, but  I know it's too soon now. One of the main ingredients in healing, is time. It's so hard to be patient. I hate that setbacks feel like they hit so suddenly, but recovery is always a gradual process. But that's how it is.


One day at a time.
One day at a time... keep breathing... take care of myself.... one day at a time.

Note: please consult your doctor for a diagnosis, and for treatment. What I'm sharing here is not meant to take the place of medical advice.

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October 10, 2019 Pacing, meds, & one day at a time

By | Published Thursday, October 10, 2019


I was asked by several people "what happened? why this setback?". It's a fair question, since I was doing pretty well. Here's my answer -

1) Pacing - I've heard all my therapists say "you're really good at managing, you have good self-awareness" etc., etc. I appreciate the vote of confidence, but the reality is this - I don't ALWAYS get it right. As I said to my older daughter, pacing isn't fun. It usually means missing out on something.

I went to morning Rosh Hashanah services last week, did a little bit on the computer, and did a 1 1/2 hours each way trip out to Marengo to see family for a Rosh Hashanah gathering, including some out-of-town family. If I'm being honest, I didn't pace myself well enough.

The following day, I went to the Deerfield optimist installation dinner, to support my husband being installed for his final year as president of the club. I wanted to be there, but going to an evening event the day after Rosh Hashanah was a lot for me.

It's really hard sometimes to pace myself, because I want to DO, to feel normal.  But I need to not beat myself up for making mistakes re my pacing, especially since I pay for it when I don't pace myself sufficiently, which sucks. Pacing ALWAYS matters... taking breaks... even when I feel like I'm doing OK, it's good to stop and say "do I need a break, even a couple minutes?".


Was there more to this than my pacing?
2) Meds - the last time I had an irritable bowel syndrome (IBS) flare up, my body responded well with the med I can take as needed. This time I wasn't responding as well.  I remembered I wasn't on any other meds when my IBS was first diagnosed.

I also remembered having stomach trouble when I tried to go up in dosage on one of my meds, and had needed to go down. Maybe I needed to go down again. For various  reasons, I'm on more than one antidepressant, so lowering the dosage of one seemed safe.

So I e-mailed my psychiatrist, was polite and gave concrete information, & got the OK to lower the dosage of that one med some more, to help my IBS.

I also need to always bring my meds - especially the as-needed meds - when I go on an outing. That goes double if it's challenging.

3) Diet - my diet matters, and despite trying to communicate with the coordinator of the optimist dinner, my food was not prepared exactly as I have requested. Lesson learned - try really hard, on the rare occasions I eat in a restaurant, to speak directly with food provider/chef.

4) glasses - switching back and forth between my distance and near glasses can be annoying. Switching may even challenge me enough that I need to take a break, but I need to wear them. Given my sensitivity, even a few minutes in the kitchen without my glasses makes a difference.  My glasses - all three of them - help me. Chances are if I feel like I need a break, it's not because of the glasses.

Final thoughts –
One day at a time.
Give myself credit for problem-solving.
Remember self compassion, which sometimes means self forgiveness - I can make mistakes (pacing is so hard sometimes - I mean who DOES want to miss out?).
Try to be in the moment, in the here and now.
Notice ANY subtle positive change, not just negatives.


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