Wordless Wednesday

Take Three: 61 days post op

It has taken me three attempts to post on here. Because I think my last post exhausted me. But I have been in s funk. A place that has me in tears and not wanting to do much. Maybe that post was the spot of truth against the mundane?  Days go by quick and it is easy to barely acknowledge your feelings (at best) or convince yourself that things are temporary (at worst).

In 30 days the kids are back in school. Summer came quick and it may be the heat but my energy and my thoughts are blank. I keep thinking about what it will be like when school starts. I do not want another school year like last year. It was awful and marred with illness and surgery. And illness and surgery. I do not have the energy for another year. School pick ups.  Homework.  Friend anything... cue, guilt.  Everything is still hard. Less painful. But still hard. And I do not like that. I want to scream not so much for things to <stop> but for them to <turn back>.  Like when you are conscious enough to know you're dreaming but not alert enough to end the dream sequence.

I have trouble sleeping, trouble readjusting in bed, trouhle getting in and out of bed.  A couple weeks before surgery we bought a new bed and while it is better on the back, and our old mattress needed to go, I cannot help but feel like when that mattress hit the dumpster so did my last shred of mobility.

I struggled out of bed on two occassions today.  I feel like my head is full of cotton.  But seriously how to cope when school starts?

The Eulogy to my Working Self

In college I stopped walking. I fought that steep and jagged slope for as long as I could. I considered graduating high school early so I could take a semester to get strong (I did not do this) and contemplated moving cross country so I could attend a microscopic college campus outside of Los Angeles (I did do this).

But when I actually got there a switched flipped. I was done walking I just did not know this at the time. My legs acquiesced to a completely chair bound routine and my hands picked up the burden my legs could no longer bear. It was the start of a love-hate, and completely codependent, relationship with my hands and arms which led to three surgeries in the ensuing years. 

I had a hard time accepting these changes... Instead of choosing them I chose to cope in a series of strategies that ranged from fairly innocuous, to certainly maladaptive, and even severely jeopardizing.  The sum of which led me to the counselor who saved me. 

She suggested having a walking funeral. And while the idea certainly was not mine, and I was puzzled by the idea, I took it upon myself to create a space that I could literally and figuratively leave behind. I won't lay it all out here but I will say that it involved wine, wine, and cake. 

And ice cream. 

So much like that I feel like creating something that captures the past three years.  I think I needed to write this out to help expel the funk I have been in for the past couple weeks.  Because as anti-climatic as not working is, and as far back as I can trace the origins of the decision, it still feels jarring.
...

In 2010 and I was happily married and expecting my second son, and was working full time. One day in the spring I got a letter from my neurologist informing me of my upcoming yearly visit. Her office is notorious for randomly scheduling folks and being inflexible about rescheduling.  I requested that the date be changed so I could save the requisite paid time off for my maternity leave.  I gave them my due date and asked that the new appointment correspond with my leave. 

I thought it was a simple enough request.  Instead I received another letter stating that my appointment had been moved to just before my due date. I did not go to the appointment.  Instead I spent that day in the hospital soaking in my newborn son.  When I held my cuddly younger son I knew that I wanted to be home with my baby and not working. But I could not take care of him on my own and we could not afford it even if I could.  So I returned to work nine weeks later and I cried everyday for the first two months.  Between the tears shed and milk pumped, the days past quickly.   And with that I fell off the neurology radar. 

--

It took me two years to make myself go back to this doctor's office. I was a few months' shy of my 30th birthday. And this "reunion" brought back some bittersweet, nay, simply bitter, feelings. Between that and my heightened physical weakness my doctor thought it was time to work less or no longer work at all. And she does not keep her opinions to herself.  But I knew I had only so many working years in front of me. The idea was a very vague, nagging concept. I knew I would not be someone who worked until retirement age but I did not know when things would change.  Maybe in my 40s? 

As the months progressed after that neurologist visit, I started to realize that my body was changing and that the pains and discomfort I was having probably were not fleeting.  I had had my children when I was 24 and 27, and the thing is, pregnancy exacerbates my neuropathy. Allegedly. I do not know if it just the added stress or the added immobility, some combination of the two, or simply the catastrophic effect of the years flying by like flashes of lightning.

I had been casually flirting with the idea of changing jobs to one with fewer hours or that required less of a commute.  But now it was becoming increasingly evident that I needed this change. My thirty two hour work weeks and 45 minute rush hour commutes were too much; however, things don't click just because you want them to. Most positions required one of two things: 1) at least a basic license, if not the highly coveted clinical license, and/or 2) for the employee to do home visits. Not the ones where I met clients in a McDonald's (I never ordered anything) or the handicap accessible, public library, because these prospective clients were ill and home bound. And the last thing I needed to do is smash someone's walls with a slip of my wheelchair or compete with them for proper parking. So to broaden my options I became licensed. And around the same time I began the daunting process of seeking treatment for a bad leg that was making sleeping impossible. 

At the very beginning of 2014 I interviewed for a part time position developing a new program for underserved cancer patients. And it so happened that the agency was five minutes from my house. We had had a massive snow storm the day or two before the meeting. The roads were a mess but luckily my husband could take me. The interview left a sour taste in my mouth.  My would be supervisor had called me the day before to confirm that we were still on in spite of the snow, yet she was very late to the appointment because she got caught in traffic. I had tried calling the office and knocking on the door but no one answered.  It is a weird feeling waiting in the hallway in a multi suite office with no one answering you.  But at least I was inside and not in the cold.  I thought the person who was meeting with me could have at least called me from the highway to cancel or delay the meeting.  I got over being inconvenienced, we began the interview, and she interrupted it to call another candidate to confirm if they were still coming in.  As the interview went on I grew progressively less interested.  The job was contract work and they were trying to secure additional funding for beyond the first six months.  OMG. I should have trusted my gut because initially I was not going to accept any offer. 

I was not surprised when I got the call a week later with an offer. I needed to think about it and discuss it with my husband. I scheduled a follow up meeting for the day after my 31st birthday. The odd thing is I wanted the job. Something changed and I really wanted to believe that they would keep me on board. So with my husband's blessings I would up saying goodbye to my fresh-out-of-grad-school social work job and parted with clients who I had known for over half a decade.

And my new job was bordering on dream job status. I was creating a niche for myself within the agency and the community at large, while doing what I loved doing. I went to work after dropping off my 7 year old at school and got home in time to get him from the bus. And on Fridays I wasn't working so my 3 year old had bonus mommy time.  And as far as funding I was told I had enough for my first year there. It was, work-wise and family-wise, a great spring and a great summer. Just not health-wise. 

I was no closer to answers or relief with my leg and I was out about 1K in medical bills during my ::quest:: for a better leg/life/sleep.  Then in September I got some weird month long respiratory bug that wasn't pneumonia and wasn't bronchitis but wasn't going away. I abandoned my leg relief attempts and decided that if I could just sleep I could deal with the physical and emotional aspects of whatever the issue was. Or, maybe more importantly, I could deal emotionally and physically with the fact that the problem didn't quite fit into any one diagnostic or treatment category. So began my romance with ambien. It was the path of least destruction so I took it even though it was not exactly what I had in mind. But that's probably what every person on sleeping medication says, no?

Enter October and my supervisor quit. I was so mad at her because I quit a job to work with her and she was leaving me. I know how mature that sounds but she was leaving me to fend for myself financially. She agreed to look at my finances before she left. I brought it up again on our last day together. She told me the agency absorbed my funds into operations by the close of the fiscal year (June) with the intention that they would reallocate funds back to me when the grantors asked for follow up. Which they never did. I was asked if I really wanted to fight for my position or begin looking for other work. I did most of her job and mine in very few hours a week. I kept my program running and also prepared for its close.   My funding, and what I had to offer, simply were not priorities. 

The director of the agency called me in to go over how much longer they could afford me and to declare my official end date, which was scheduled for two weeks before Christmas.  I applied and interviewed for several positions in that time. I squeezed as much as I could from every pay check. And on my second to last week I was told that my hours were miscalculated and I lost two days' of pay.  Around this time my cubical and carpal tunnel pains began (more than a coincidence I am sure!). My first couple days of being a SAHM I managed to save my tears for once my husband got home. I dreaded having to explain the circumstances surrounding my departure from my previous employer to prospective employers and did my best to keep the prospects coming. But the pain got so bad I cut out all computer use , especially online job applications. In a daze I went on my last interview, just after my 32nd birthday.  I gulped down silent sighs of relief when the hiring manager profusely apologized for an oversight he made concerning my candidacy. As it turns out I did not meet their qualifications completely, but more notably I became aware that the increasing burden of my limitations precluded me from working. Or thinking about working.  Or coming up with start dates.

And so the story went. Within the last two years I have had three tenuous respiratory infections (1 pneumonia, 1 bronchitis, 1 illness N.O.S. and four rounds of prednisone), three MRIs, six x-Ray parties (sessions?), 15 orthopedic appointments, 3 neurology appointments, 1 return to the pulmonologist, 2 surgeries (4 incisions total), and 5 PT/OT appointments.  And in all that I have still struggled with the idea of not working. I wanted to choose to not work rather than have my limitations force the decision for me. I had placed my goal to work till I was 35 but I was tired of bargaining with my body for three more years. So in March I purposefully crossed what feels like a blazing hot social work line and applied for disability, blissfully unaware that I had already crossed the line between "can" and "should not" work.  And in spite of all the obvious, I expected a fight. 

Full Circle, so goes the story

When I found out I was having surgery on both arms I knew there was no point in looking for work. My previous job ended eight days after the pain started.  I have known for the past few years that I would have to stop working soon enough and apply for disability. 

So in February I began the application process. My application was submitted to Social Security in late March.  The decision was made at the end of May but it was audited.  Tuesday I received my approval letter.

Obviously I Thank God it was approved. But the whole process happened in ninety days - again I am blessed for this - but it means my health is just that bad.  As a social worker I have worked with several folks who were in the process of applying. But it took longer than this.  And a lot of them were denied. So this feels awkward. 

I have only known school->college->graduate school->work my whole life. All of a sudden because of my health I am off that track. 

A few hours after I got my mail I had my final post operation appointment, six surgeon visits, two surgeries, and two pre operative counseling meetings.  My arm continues to get better but recovery is tougher. Transfers hurt. Sitting up hurts. Writing is hard. But I am getting by and I believe it will get better.

Crazy that the application and surgery dances ended on the same day.

Slow down

This is not a post about solutions. It's a post about patience and compassion towards one self. And a bit about surgery. 

Surgery^Squared happened exactly a month ago and I think that I am where I expected to be, that is if I slow down and think rationally. This is my dominant arm after all. And last time it was six to ten weeks before I felt the struggles in recovery subside. 

I am terrified when I try transferring onto my  toilet that my arm will give out and I will fall; not completely fall, more like a half fall somewhere between the toilet and the wheelchair and the ground. And I will either be lucky enough that I can manage to slump over my tub and onto the toilet (which happened the day my husband returned to work) or I will gracelessly find the least-worst way to hit the ground. So I can call for help. Before during and after which I no doubt pee myself.  

Adjusting to my new mattress and a weaker arm. And having to ask my spouse got help to change positions. Even if it means waking him. And trying to accept this as my for-now-reality. And also being terrified of feeling like I have somehow surrendered. 

I have to take breaks during a meal because feeding myself hurts and tires out my recovering arm.  And possibly need help from finish the meal. 

Index Finger

It used to move a little. Very little. But now three weeks after surgery still no dice.  Should I remember and scrutinize or simply let go??

Celebrate with a BANG(LE)

These poor arms deserved some sparkle. 

As it turns out

... I am not the only one who thinks surgery is a mindfuck and makes a graph. Pardon the language it has been a painful couple days in recoverydom. 

Here is my graph: http://atrophydlifeforatrophywife.blogspot.com/2015/04/7-and-8.html?m=0

14

I've lived on these cups during both surgeries - keeps cold drinks cold and warm drinks warm. I use to hands to use cups so these have been great during recovery. 

I bought mine at Target but here is a similar one at Kmart: http://m.kmart.com/despicable-me-minions-jar-tumbler/p-011W008297799001P?sid=KDx01192011x000001&pla&kpid=011W008297799001&kispla=011W008297799001P 

Comparable price to the one I bought.   And the mason jar size means it holds a lot. Being a kids cup you do not have to worry about dropping it and having it break. 

13

Been reading lots. My new thing. Started because of my right arm being in a cast (now it is supposed to be in a splint but I take lots of breaks, ssh!). I used to never read but I hope to keep this hobby.  So far during surgery I have read:

Likes:

Gone Girl

The Light Between Oceans

The Vacationers

A Hundred Summers

Dislikes:

The Ocean at the End of the Lane

Currently on:

Wild

12

Steering with a splint is hard. Correction it WAS hard. 

The hand that needed to breathe.

Oh neuro

PSA. My neuropathy affects both motor and sensory nerves in the extremities. While some motor pathways simply do not work, and some areas have diminished sensation, there is nowhere in my body that is immune to sensory perception altogether.  So even if I cannot move something it can still hurt, making pinched nerves o so wonderful...

I bring this up to vent about a bad experience when I saw my neurologist...I am there with my arm heavily bandaged from surgery a week ago, and she knows I did this for pain relief.  She knows I had it done on my left arm a couple months ago.  She finds it appropriate to re-chastise me about not being able to move all of my fingers, as in, asks me to show her whether I can move the fingers that are controlled by the ulnar and median nerves to prove her stance on surgery.As in don't do it because you won't reap the full benefit, even though the last six times were game changers.  That attitude, along with feeling like a second tier, untouchable patient, make me want to vomit all over her.

That's lovely lady, go do research on monkeys, not people.

--This PSA sponsored by the letters C, M, T, F, U                                         

11

The remote basket. $3 at Target. Game changer. 

10

9

New book.

Doritos.

Viamin D.

8

Today was doomy and gloomy.  It rained and was unseasonably cold.  As though Mama Nature was setting the tone for my neurologist visit.  In which case I am honored that God chose a sentiment that I could match.  PS shawls are amazing when you are carrying about fifteen stitches in your arm.

  

7

If you are going to have surgery pretty much all over your arm may I suggest using an XL ice pack - one designed for back pain?

6

Had to redo the wrapping ourselves today.  Not too shabby, eh...

5

Sorry about the castbomb.  As you can see I am laying on my side, my arm propped up on pillows...my dog has nestled up with my surplus pillows.  Tandem midday slumber.