Disability Musings

This midweek finds Ron and I both doing alright.  He has his good days and his bad days.  As do I.  We take them as they come and try to keep in mind that our good days and bad days do not always synchronize.

Saturday was especially bad for Ron.  He slept late and was super grumpy all day.  He had no interest in doing anything.  He didn’t want to eat or talk or go outside.  I made many suggestions, all of which were shot down.  I asked how I could help and he said I couldn’t.  He told me if he were an animal, he would crawl in a hole because he felt so bad emotionally and physically – he just wanted to be left alone.  Ouch.  I tried not to take any of it personally.  After discussing it with his hospice nurse later, I learned that I really should just leave him alone when he feels like that.

On Easter, Ron said he felt up to making the trip to Alma.  I was shocked, after such a bad day Saturday, but he wanted to see his family, especially those who do not get to come visit.  So, we made the drive.  I dropped him off with his family and went to spend four hours with my parents.  I was the only kid who was home for the holiday and I think they were relieved to have someone visit.  We ate a normal Sunday meal and just hung out like normal weekends of days past.  It felt so normal that I started to feel weird, since nothing in my life is normal anymore.  How strange, to just sink in and visit and not have any responsibility for four whole hours.  We went and saw my grandmother, who is now residing at a fancy nursing home, since her husband passed away in late December.  I was glad to see her, as she seemed happier than I had expected and looks like she is doing well there.  I went and retrieved Ron in the evening and he was pretty exhausted and in some pain.  We made the drive back home and he slept on the way.  I got him back inside and in bed and he went to sleep and slept through the night.

Monday morning started out good, but he quickly got exhausted and was in bed and sleeping again by early afternoon and slept on and off through the evening and night.  Yesterday, he had an awful day with a great deal of kidney and back pain, which also radiated to his front lower right abdomen.  He was so hurt he didn’t even want to smoke.  He spent most of the day in bed.  We had two volunteers who came to the house – a really sweet, wonderful husband and wife team.  The husband mowed my yard . . . in the snow, mind you.  The wife sat inside reading, not trying to engage Ron in any way (because he feels awkward with people he doesn’t know “babysitting” him), but within earshot if he needed her.  This allowed me to go into town to see my therapist and to run some quick errands.  I was super productive with my time out of the house and it felt good.  After the volunteers left, my brother and sister-in-law brought out pizza for dinner and we watched a movie.  Ron was quiet, but said he felt a little better.  He didn’t sleep well last night . . . which means I did not sleep well, either.

Today, Ron has been feeling better.  He got up fairly early and ate and got in the shower (a production that takes an unimaginable amount of energy for him).  He rested for a bit and then we went to the hospital for his procedure.  I took a walk around a lake with a friend while he was at the hospital.  It was a nice, cool, sunny spring day.  Seeing the sun reflecting off the water and noticing the delicate blossoms emerging did me good.  On the way home, I drove on the back roads so that Ron could see lakes and trees with blossoms, too.  He remarked several times about how beautiful it is where we live.  I have to say that I agree.  Since we started dating in the spring, this is kind of our season.  I get giddy, nostalgic feelings every time I see an apple blossom. 

Came home to good and bad.  The good: dogs that are so happy to greet us, morphine restocked to keep his pain level down, our friend, Kim, dropping off another meal, and a phone call from my lovely sister out in Texas.  The bad: my denial letter from the short term disability claim.  Fortunately, the good outweighs the bad, right?

Ever since reading this five page document, I have been up in my head.  It is so surreal to read about myself in this way, as the reviewer goes over letters, medical records, paperwork, etc. to weigh them against the criteria they are looking for.  It seems I made a crucial error in writing a “very organized, coherent, intelligent, and well-written” letter to accompany the claim.  Clearly, I am functioning far too well cognitively to be impaired emotionally in any significant way.  Additionally, after reviewing notes from the past YEAR that I have been in therapy to deal with all that has happened and come up since Ron was diagnosed, she concluded that because I have been talking about being overwhelmed by various stressors, but still working up until two months ago, I should be able to continue working like I had been all along.  Somehow, the reviewer (herself a mental health clinician with credentials nearly identical to my own) is unable to make the correlation that with Ron’s illness progressing and him growing more physically incapacitated and dependent on me and approaching end stages of his life, I would grow increasingly stressed, depressed, and anxious, which could interfere with my ability to perform my essential job functions.  Not to mention the toll that unrelenting, constant, growing stress can take on a person’s emotional wellbeing. 

There were a few other issues that were not quite up to par with how they like things to be filed.  The short versions of these issues are: 1) I was supposed to see my doctor on 2/14/12, but the office messed up my appointment time and I couldn’t.  Rather than reschedule, the office manager told me I didn’t actually need to see her because I just saw her in November and she was willing to fill out the paperwork based on that appointment.  So, I trusted that, but it was wrong.  I should have seen her that day so she could write a note/prescribe me to be off work.  2)  My therapist took a trip out of the country right around the time I stopped working, making it appear that I dropped out of treatment, since I didn’t feel like getting started all over with a “fill-in” therapist for only a few weeks in her absence (not to mention being busy with caring for Ron).  We corresponded while she was gone and then I resumed seeing her when she returned.  But, the disability reviewer saw this as a month that I didn’t need treatment and doesn’t seem to understand that I have resumed now. 

Ahhhhhh!  I am so frustrated.  I am grappling with what to do, and still have not decided.  Do I appeal this decision and fight for myself?  I am fighting to declare myself psychiatrically impaired; is this even something worth fighting for?  Appealing involves me writing a letter and presenting more medical records.  Well, there really are no more medical records than what she reviewed.  The way I see it, I could make another trip to my primary care to see if she would be willing to write a letter explaining things.  And, I could ask my therapist to write yet another letter explaining her absence and that we maintained correspondence while she was gone.  For me to write a letter . . . well, sure I can write and explain it and advocate for myself.  But, it was my first letter, which apparently was too articulate to indicate any kind of mental impairment, that contributed to the decision to deny me in the first place.  So, me writing to advocate for myself does not seem like a good step in this situation.  The steps needed to appeal are not colossal, but are they worth following through with at all?  I feel like even if I do, it indicates I am capable of follow through, which is interpreted as me being able to work.

I feel like it is a lose-lose situation with this claim.  I don’t know that I will ever be able to convince anyone, (other than those who know me, are closely following my story, or have been in a similar situation themselves) that I am not capable of working right now.  My therapist and doctor support me being off work, but the disability company does not.

In so many ways, this disability reviewer’s job is similar to aspects of my own.  I know I would have had a hard time approving myself.  In fact, as I write this, I think, ‘Maybe this is karma or something.’  How many times, before I wound up in this situation, did I deny someone treatment because they were grieving?  “Normal bereavement is not considered a severe or persistent mental illness,” I can hear my old-self reciting.  I would refer folks who were in “normal bereavement” to community resources, like grief support groups, rather than authorizing payment.  Now, I look at my old-self, and this reviewer, and I think, ‘What a bitch.’  Since Ron became ill, I have become much more understanding of the toll this takes on family members, particularly caregivers.  My responses at work had become less calloused.  If anything, this whole experience has given me more empathy and wisdom for when I encounter situations like this in the future . . . and for that, I am glad.  For the ignorance of those who have not been here or just plain lack the skills to understand and are only worried about protecting their company’s financial resources, I am incensed.

There is a lot of discussion going around lately about the inclusion or exclusion of grief in the DSM-V.  The DSM (Diagnostic and Statistical Manual of Mental Disorders) is like the Bible of mental illness, spelling out exactly what criteria are needed to diagnose someone with each specific mental illness.  We are currently using a revised fourth edition, with the fifth anticipated to come out in May 2013.  Some people worry that to include grief would pathologize a normal reaction to the loss of a loved one.  Generally, I agree with this.  (As an example, I rejected my doctor’s offer to place me on psychiatric medications.  The way I feel and experience this loss is part of the process.  Why would I want to numb that, even if it is painful?  If I skip feeling it now, won’t it show up later, in other ways?)  Today, however, I realize that to include grief in the DSM would mean greater access to care and to support (for example, with this disability claim).  Yet, this becomes kind of sick when we think about the fact that we have to pathologize a natural response in order to have it recognized by insurance companies and therefore taken care of.  Can’t a natural response be disabling?  Doesn’t a natural response warrant care and support in its own right?  The politics of it all are sickening.

So, as I close this post and try to move on with the night, I still don’t know what I am going to do.  I have some time to decide and I am open to suggestions.  Do I let it go and move on?  Do I fight and appeal?  If I fight, what am I fighting for, really?  Recognition from a third party insurance company that my current state of mind really should be realized as preventing me (and others in my situation) from working?  Or the financial gain of 60% of my income?  Or both?  Are either of those things worth it, especially when I have so many other battles on my plate right now?  For Ron and I, it is often a fight just to get through a day.  Do I really need one more thing?  Even if it is not too hard to go through the appeal process, the likelihood of this decision being overturned seems very slim.  Rather than be defeated again, wouldn’t it be more pleasant to just let it go?  Or would I regret that decision?

OK.  There.  I have vented about it (probably to the extent that you readers are bored to death) and now I need to be done, at least for tonight, with worrying about this. 

Oh, and on the gratitude side of things, thanks to those who have reached out in response to the last blog post.  Ron and I both want to be clear that we do not want anyone to be put out financially or to feel pressured.  If you are struggling yourself to make ends meet, our call for assistance was NOT intended to go to you.  Take care of you and yours first and foremost.  Just, for those who have a bit to spare, we are and will continue to be grateful.  We are always touched by others’ support, big and small, financial and emotional.  You all help us get through each day.