Baruch Hashem!

הודו לה' כי טוב, כי לעולם חסדו!

Give praise to Hashem because He is good, His kindness is forever!

Just a few days after my last update, and after months of worrying, I finally got a call from my employer’s long-term disability provider. And B”H, all they need now is some financial information to determine my benefit amount, and it’ll be ready to go! I have no clue how much I’ll be getting each month, but I don’t even care, because something is way better than nothing! I can’t even describe how grateful and relived I am!!!

Bureaucracy and manna

I haven’t posted an “update” in a while, because there hasn’t been much to say. My health has been relatively stable; some days are better, some worse, but overall things have been mostly manageable. The main focus of the last 4 months has been dealing with endless forms, phone calls, and bureaucracy while trying to get various benefits squared away. I’m working with a (free) lawyer through the Cystic Fibrosis Social Security Project, so it took a while for them to obtain and review my medical records and decide on a course of action. Medicaid also took a stupidly long time to come together, and in the meantime Cobra and copays have sucked my savings dry. It feels like I’ve been spinning my wheels for months, with no choice but to wait for other people to make decisions about my life. Not exactly fun.

Finally, however, things are starting to come together. As of this month I’m back on Medicaid, and I finally started my Social Security application. It takes about 6 months for Social Security to make a decision, and there’s every possibility that I’ll then have to go through the denial and appeals process to make it even longer. But at least the journey has finally begun!

The current stressor, aside from reams of paperwork, is that my short-term disability from the state is due to run out by February. I still haven’t gotten a determination on my long-term disability claim with my employer, and there’s a chance it will be denied due to a pre-existing condition clause. So I’m preparing myself to go from “poor” to “destitute” within the next couple months, while also hoping that things come together.

It kinda feels like the Jews in the desert, who had to rely on Hashem to provide for their daily needs. Every day they received only the exact portion of manna that they needed for that day, and they had to trust that Hashem would provide what they needed again the next day, and the next, and all the days after that. For the last several months, it feels as though Hashem has been providing my exact portions as I need them, and no more than that. It has been extremely difficult for me to completely relinquish control, and to accept that most of the time there is very little I can actually do to prepare and plan for the future. Perhaps that is the lesson I’m supposed to be learning: that all my efforts and plans and the strength of my own hands is nothing but an illusion, and all we ever receive is that which Hashem gives us.

I’ll try to be a good student.

Grow

https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivowCwv9jzdrQSKgAst5DPdfv4-eQjt1Qwrdg_H0eYrXS_hyphenhyphenZfJoUYdElx44WkNKv8y1UPDPqb8Kma_kxoSZGf1R7L3lOHRbc-CmQM1TIZ4m7y1RWpn0rp_CxqBkGYx2kQAwes7XDjS9th/s1600/heartcenteredrebalancing5.jpg

New day

The start of a new day. A moment of unfulfilled promise and unfolding opportunity. Blinking eyes, a yawn, a stretch – perhaps a delay of “just a few more minutes” – but finally, inevitably, the stagnant comfort of sleep is left behind for another day of activity and purpose.

The close of a long day. A winding down, a recovery, a time to regroup and recover. A chance to lay down tasks and responsibilities and slip into unthinking comfort. A reward for the day’s efforts, and a chance to prepare for the next new beginning.

Two slavering hellhounds bracketing each day.

There is no ease in waking. Sleep brings blissful unawareness of the disease mercilessly ravaging my body. A host of symptoms escort my wakening, all clamoring for attention, and the day cannot begin until their needs are met. So I remain in bed, pretending to sleep, willing my existence out of existence for just a few more minutes – until, at last, my existence can no longer be avoided. Thus begins another day.

And then, at the close, there is no unthinking collapse into slumber’s sweet embrace. Oh, it would be so easy to drop the burden of self-care and be a normal human being for one night. But the consequences prey on my mind, leave me no peace, demand compliance with lengthy and uncomfortable treatments. So once again, I lay in bed, pretending I’m not yet ready for sleep, avoiding the reminders of my body’s weakness, until I can no longer pretend and finally force myself into the prison of my evening routine.

A bitter pill
Against my will
Until the day
When sleep will stay.

Asthma

https://asthma.net/wp-content/uploads/2016/10/IMG_5001.jpg

What's your theme song?

I really identify with Five for Fighting’s song “Superman.”

It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me

Since childhood, over and over again, I've heard people say how wonderful I am. I’m so strong, I’m so brave, I’m so inspiring. But guess what? I didn’t sign up for this gig. I didn’t want to be any of those things. I just wanted to be. I didn’t get a choice though, because if I wasn’t those things, this illness would have taken me long ago. So I'll continue being those things, in order to cling to whatever this world will let me have.

But I never wanted to be a hero. Remember that.

Courage

https://onmyfrontporch.files.wordpress.com/2012/09/quote-030912.jpg

Fear

Quietly, secretly, drowning in fear

Politely, unobtrusively –

Like the assassin crawling inside my chest,

Silently spreading from airway to airway,

Congealing

Suffocating

Destroying

So many masks…

A macabre carnival of deception and death:

A façade of strength and grace, concealing terror and despair –

A vigorous outer shell, concealing decay within –

Spin the wheel, round it goes, where it stops nobody knows

Which face will you see today?

Which place will I be today?

Where will the needle drop?

Planted

http://thedailyquotes.com/wp-content/uploads/2015/12/in-a-dark-place-christine-caine-daily-quotes-sayings-pictures.jpg

Let's dance.

https://fortworthtexasdentist.com/wp-content/uploads/2014/09/Optimist-is-someone-who-figures-that-taking-a-step-backward-after-taking-a-step-forward-is-not-a-disaster-it-is-more-like-a-cha-cha.jpg

Starting Over

It’s been a week of Big Decisions.

Returning to work hasn’t gone all that well. Shortly after returning I started falling apart again, and I wasn’t able to manage more than a day or two a week due to the exhaustion and shortness of breath. After a week and a half, I realized that this really isn’t working. I had hoped to be able to hold on for a month or two until I was able to get Medicaid coverage squared away, then move down to a part-time fee-for-service position at the outpatient clinic. But after the dysfunctional disaster that last week turned into, I knew I had to do something else. This trying-and-failing wasn’t fair to anyone involved – myself, my clients, or the agency. So on Monday, I met with HR, and explored other options.

The current plan is to finish up my remaining paperwork this week, then go back out on short-term disability. Once I use up the rest of my 6 months of state benefits, I will be eligible for my employer’s long-term disability plan. Within the next few months I will hopefully get my Medicaid reinstated, so I won’t need to worry about losing my health benefits. And then I will go along my merry way as a person with a long-term disability.

It’s not easy. I’m a very driven, determined individual, and slowing down is not part of my innate skill set. I worked hard to return to school and get my MSW, and I definitely planned on using it for more than a year and a half. But I’m trying this new thing now where instead of fighting against my body, I actually listen to what it’s telling me, and right now the message is loud and clear: Slow Down.

Maybe later I’ll be able to return to work part-time. Maybe, once I’ve had time to build my strength up, I’ll be able to go to the outpatient clinic on my terms, doing the job I love to whatever extent I’m able to manage, while also listening to and taking care of my body. This is my long-term goal, and I’ve set it as a guiding star in my sky, twinkling down on me whenever I care to look up and admire it. But just like the stars, it is a distant goal, a “maybe someday” goal that’s only fit for idle daydreaming right now. Right now, I need to be healthy. I need to get strong again, without worrying about how I’m going to pay my bills, or what my clients need, or how I’m going to get out of bed and manage another day of work. Right now, I’m going to focus on me, and on what I need, and on devoting the energy and attention I showered on my clients to myself for a change.

It’s my time now.

Back to baseline!

Another day, another doctor’s appointment. But THIS time, finally, tests showed that my lung functioning is almost back to baseline. After being home on temporary disability for over 6 weeks, I have FINALLY been cleared to return to work this Wednesday. Baruch Hashem!!!!

Freedom!

IV free is the way to be!!!!!!!!!!!!!!!

My wish list is weirder than your wish list

You know your life's kinda weird when home spirometry (lung function testing) equipment goes on your Amazon Wish List...

Still climbing

I had a follow up appointment today. The good news is that my lung function is definitely improving. The bad news is that it’s improving very slowly. So instead of being set free from IVs as I had hoped, we’re running another week of antibiotics. Sigh.

I’ve somehow been pretty Zen about the whole thing so far, but tonight I started feeling a little trapped as I wondered what to do about Shabbos this week. Someone had called earlier in the day and offered to bring me food, but I wasn’t sure what to do about company, or whether I can manage getting out for a meal. Just when I was starting to feel down, however, a friend called and asked if she could join me for Shabbos lunch. And just like that, I have Shabbos plans. Thank you Hashem for sending me just what I needed right when I needed it!

Progress!

Thank G-d, after a week of IV antibiotics I am breathing so much better! I'm still very worn out, and it's going to be a long, slow process to rebuild my endurance and work up to where I want to be, but I'm grateful for the progress I've seen so far. I really appreciate being able to do simple household tasks, like carrying in groceries or taking out the trash. Heck, even being able to independently run errands is a big deal! Hopefully soon I'll be able to get back to work and regular life, and will have the luxury of taking all these tasks of daily living for granted again.

I am so grateful to everyone who has come to visit, both near and far! Thank you so much for putting in the effort and taking the time to help break up the monotonous days and weeks! And thank you everyone for the phone calls, emails, texts, and Facebook messages!

Round 1

Round 1 goes to CF. We were hoping that a week of IV fluids (hydration therapy) would be enough to break up the junk in my lungs and get me back on track. Though I did make some progress, it wasn't nearly as much as we were looking for. So, for Round 2, we're bringing out the big guns: IV antibiotics. Fortunately I'm still being treated at home and am keeping out of the hospital. Unfortunately, I also managed to come down with a head cold this week, because I'm a drama queen. So right now I'm all runny nose sore throat miserable, which pretty much sucks. But hopefully by this time next week I'll be feeling miles better!!!

Anyone wanna brave my germs? Visitors welcome! 

On the plus side, I got a day off from treatments yesterday while they worked out the transition from hydration to antibiotics, and my wonderful friend Sandy came all the way down from NY to visit! Not only did I get a chance to get out and about all day without being attached to an IV pole (for the first time in a week!), I got to do it with a friend! Definitely lifted my spirits and gave me energy to buckle down for this next round of treatment. Thanks so much Sandy!!!!!

Community support

B"H, despite being sick, I had SUCH a nice Shavuot! I'm so grateful to live in such a caring community! From setting me up with meals close to my apartment, to getting me a wheelchair, to scheduling people to chauffeur me around town, everything was worked out to put my illness on the back burner and allow me to experience simchas yom tov. Cherry Hill rocks!

Health issues and adjustments

Some of you know that the last several months have been medically difficult for me. In October I had a significant CF exacerbation and was hospitalized most of the month. It took until March/April for me to really regain lung function and feel close to fully recovered. Unfortunately, my health started slipping again a couple weeks ago, and I'm currently going through another round of breathing problems. Fortunately I haven't been hospitalized, and we're hoping that a week of home IV fluids will help clear things up, but it's still a disheartening setback. Once again I'm indefinitely out of work and on temporary disability, and even once I get passed the stage of acute illness it's going to be another long haul to scratch and claw my way back to mostly-normal lung functioning. I've had to make significant changes in my daily life, and need to continue making more as I adjust to new medical realities. It's been difficult, and I won't pretend that my disposition has been all sunshine and daisies throughout the process. It's gotten easier to manage with practice though.

I'm pretty much on house arrest this week due to the ridiculous amount of pollen in the air these days. Truthfully, right now even walking down the hall is difficult for me, so I'm not much inclined to be out and about anyway. It would be lovely to have some company though to break up a long boring week. And for those who aren't local, prayers are always greatly appreciated! My full Hebrew name is Keren Eliana bas Sara.


On the bright side, my family has been awesomely supportive and I don't know what I'd do without them. My employer has also been incredibly understanding, for which I am so grateful. AND, despite all this, I still managed to move into a new apartment! Ok, so technically my family did all the hard work; I just directed. Thanks Mom and Frank!!! I'm so excited to be living near the frum community now (especially with yom tov coming!), while still having my family close by. Upwards and onwards to better things!