Monday, January 4, 2016

Overwhelmed

We have new next-door neighbors. They are really very special people, with young kids. The cool thing is that one of the kids is a good friend of Azriel's in his 4th grade class! The two of them are are very excited.

We had them over for Shabbat lunch.
In our conversations getting to know each other, she told me about her extremely busy, productive life. She is in university, and working full time as an engineer. And five small kids at home. (I think she's at least 10 years younger than me, maybe more).

I told her my "before" getting sick life, and "after" life. I didn't actually go into any details of what happened to me, it wasn't a private enough setting. I just said I got sick 8 years ago, and have been through many surgeries and complications. I told her I'm not working at my careers now, for 8 years. She said "ah, so you're home". All-of-a-sudden I felt like a non-'go-getter', someone who gave up. I know that isn't the case, and I know she doesn't really know me or my family well at all yet. That's irrelevant. I told her that in reality, I'm not home so much. I have been granted the gift of being with my children in the afternoons, but many mornings I have to deal with all that it takes to organize and run a life of being a patient, and staying in as best shape as possible for my family (and self). I have many doctor appointments (which eat up TONS of time), tests, physiotherapy, and paperwork, just to keep myself in good working order. This is something that someone who has never had to deal with this sort of life could understand.  It is very individual, and that means lonely sometimes, and it takes a lot of belief in myself and inner strength in order to not feel inadequate in the presence of someone who is living a similar life to that which I had to leave. Meaning, society's view of what it means to be "productive". She told me she's dying for a vacation, or even a small break. I told her that she needs to take one whenever she sees a possible window of opportunity. What I didn't say, but was on the tip of my tongue, was that if we don't take a break when we need to, Gd will make us take one. I didn't want to scare her, though, or lay it on heavy. (she won't be reading my blog, they don't speak English).

In the meantime, life has been so heavy. Just so heavy. I have been to a few specialists about my throat problem, and it seems to be diagnosed as a "cricothyroid dislocation". That would explain the bump that happens every time I swallow, and the cut off higher range of my voice. Apparently it is not from the intubation tube, but rather my head being in a bad position for the 4 hours of my last surgery. What to do about it is still unknown. I am grateful that it isn't painful condition. That is a pure gift from Gd- a medical condition that is not painful. It's just that it is really disturbing my daily life.

I have to say, though, this specialist that I saw yesterday was as amazing as his friend was, the ENT who referred me to him. It was again like an hour consultation, and he didn't charge me *anything*. As "luck" would have it, an esteemed colleague called him while I was there with him. He took the opportunity to explain to her my case. She will now take my case, and she is the one who diagnosed it on the phone, just by hearing all the symptoms from the doc I was with. I don't yet know if there is a treatment plan. I pray there is, and that it is non-invasive. I am planning to go possibly to a "cranio-sacral" therapist, or... I'm not sure what else. I desperately want this problem resolved, it is really making me crazy.

The other heavy stuff in life:
One of my children is suffering in school, and things are so, so hard for him. I have a counselor in the picture who deals with placement of kids in the right schools for special education, and I pray she will be able to help us. It has been **very heavy** and hard on all of us.

My friend's cancer came back. This is the friend who was in a coma last summer when I was there with her almost every day. I am one of her "people"... she has no family here. She will need a lot of support. I can give it, but sometimes it is just so overwhelming.

My physical therapy is Hard. I know that is good, but it's so hard. Both my legs need strengthening, and I am getting stronger slowly, but it takes everything out of me to do that sort of physical work-out, daily. It still hurts. I just want to curl up in bed and lick my wounds, you know?

I think that's enough for now, don't you?
I have a migraine coming on... haven't been sleeping well, partly because of this throat click thing- it is so annoying when I am trying to fall asleep. It feels quite unpleasant to swallow, and it is amplified in my head so that it is an actual noise to me.

Sometimes things are just so heavy.

21 comments :

  1. She's not heavy. She's my sister. Love you.

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  2. We're here to help lighten your load, Sara. Delegate tasks, vent on phones and face to face. We've got your back. You have our hearts.

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    1. Thank you, my dear. That is good advice. I just don't have much time to hang on the phone these days. Especially without little ears around.

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  3. Oh lovie! Giving you a big fat hug.
    I can so relate to that conversation you had with your neighbor - believe me, it happens to me too sometimes when I speak to people! (as a matter of fact just two weeks ago also during a shabbat lunch when I heard someone say : I am putting my career on hold now for the kids but at least I am making a really good salary, I really earn a lot. LOL! That took me on a spin on story island in my brain. Glad I got out of that one alive). Keep believing in you, keep being the wonderful you that you are. I love you!!!

    Love you lots,
    Rivka

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  4. I'm with you, Honey. It has been very hard recently. I won't bother you with the cliches. Just a quick e-hug from the one who loves you.
    Robert

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  5. You are specialness made flesh... Did you ever long to be different, super special? Hmmm, just wondering
    Shulamit

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    1. It is certainly a comment that I get a good feeling about, but I am not really sure what the second part means... I'm not seeing out of the box with this one. Explain?

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  6. Wow, I hope it goes away. Usually, if something is dislocated, it can go back in place, can't it?

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    1. I'm certainly hoping so. I don't yet know how it can happen, tho.

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  7. אוי לא! נסי טכניקת אלכסנדר, פלדנקרייז, אוסתאופתיה, כירופרקטיקה ושיטת "ליברה" (שיטה שפיתחה ידידה שלי שגרה במושב אילניה ומחזירה למקום חוליות. בכל מקרה, זה יקח זמן. הרבה הצלחה ורפואה שלמה

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    1. Too many different practitioners and tachniques to handle. I alredy decided against chiaroprator. This is a very sensitive issue, and I don't think it is appropriate for this. The other ones, well, we'll see. I plan first to check out cranial facial.

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  8. Refuah shlema and if possible can we direct your creativity back to music, food, babies, and other fun stuff? Enough of coming up with brain-teasers for medical practitioners, please... Still rooting for you!

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    1. We don't know yet. I have a phone consultation this evening, and a few imaging tests to do.

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  10. I hear you. As usual too much on your plate. Hope the solvable problems get taken care of.

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  11. Hang in there. Sending hugs cousin!!

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  12. Dear Sarah, have an osteopath check your hyoid bone and surrounding tender points it might help. My wife had something like that once, it is worth looking into.

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  13. I am thinking about you and wishing you strength.

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    1. Beth, I am thinking about you and wishing you strength, too. My heart goes out to you.
      XO

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  14. Those lousy doctors. They try to repair one thing and cause damage in another part. Don't they know that a head needs good support in the right position all the time? Sue them! But that takes energy. Do they at least know what damage they caused you? Your needless suffering makes me boil inside. But that doesn't help you (nor me).

    So here's just wishing you that a solution will be found by whichever path you discover will help, Beezrat Hashem.

    Refuah Sheleima and all the best
    Judith

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