Chronic Illness in America

So I’m not sure what its like in other countries.  Or what it has been like here in the past.  But this is a theme I might visit on as this continues with me.

Yes, I am fortunate to have family that helps me.  Way more than they should.  But the fact is that if I didn’t have them I would be screwed.  Seriously screwed.  My parents covered our rent for the past two months.  They have been covering groceries now and then.  They paid for my daughter’s school needs (clothes, supplies etc).  My dad paid two months of my car payments.  And they have paid for one month of my medication.

Prior to this illness, I was the “breadwinner”.  I am a nurse with close to ten years experience.  When healthy, I make decent money.  Enough money to support us in a three bedroom apartment in a nice suburb in Texas, to have one car payment, to put food on the table, to have internet access and satellite.

We got married in June.  We paid for the entire wedding ourselves.  It was not a lavish affair, and when it was planned, I wasn’t sick.

I required two weeks off leading up to the wedding for more tests to determine exactly what I had going on with me.  I returned to work for three weeks and my condition worsened.  I would like to say my workplace was supportive of me pursuing the best care by giving me time off and being sympathetic.  But that wasn’t the case.  My mother in law passed away mid-July and the day before I was to start my bereavement leave, my former supervisor sat me down and told me that I was too sick too much of the time and that she fully intended to make me account for my frequent absences when I returned.  I pointed out the dates she was concerned about and how the correlated to a specific medical event and how it now related with my current diagnosis.  She said she didn’t care.  And this is supposedly an educated nurse in the field of compassion.

While I was assisting my husband and his family up north, my condition further deteriorated.  I don’t know if it was the environment up there, the cigarette smoke (my father in law is a smoker) or the stress, but I returned early so that I could see my docs in hope of starting treatment (the dreaded methotrexate).

When I came back and they saw me, it was determined that I could not return to work until the methotrexate was started and the inflammation was halted.  So essentially I have not worked since mid-July.  I have not had a paycheck since the end of July.

I have paid into a short term disability account which I have not received one payment from to date.  My physician has kindly filled out all the forms required of them, including my FMLA forms (and the FMLA forms in a hurry because I have been threatened with termination if I don’t produce such and such forms by “x” date.  Termination means I no longer have insurance benefits for myself, my daughter and my husband.)  Today I called the short term disability company and was told that my case is “on hold” because my employer has not sent them the proper paperwork.  So I send an email to HR at my employer, sweetly asking them to send said paperwork, today if possible (I figure if they can do it so can I) and have yet to receive a reply.

This is my life.  We barely made rent this month.  I was able to cash in my FSA funds from my many many many co pays (that was another adventure all its own) and that was where I got the rent money.  My parents, again, have assisted us with some groceries.  They started shopping in bulk and are sharing whatever they get with us.

I may lose my job for good next week as my FMLA runs out.  I see the rheumatologist for a regular monthly check up next week.  If I am unable to return 100% to my previous duties, they can terminate my employment.  I have been told that they will not “create” a new position for me, one that could use my talents that I still retain.  I have to come back 100%.

I’m not sure if I ever will be 100% as long as I continue to take methotrexate.  I don’t think that anyone can be.  It is a poison.  It degrades cells, that is its job.  My cells are out of whack and are attacking its own tissue to such an extent that my body is requiring poison to whip it back into shape.

At this current time, my limits are 20 minutes.  I can do sustained activity for 20 minutes.  That usually breaks down to cleaning (dishes, laundry, a shower etc), driving, typing.  Walking, make that 5 min.  After said activity, I need to rest.  Sometimes I completely “conk out” and sleep for one or two hours.  My limit for doing activity in a day is usually 3-4 of these little segments of activity before I can’t do anymore.  And depending on the activity, I may feel worse the next day.

This in no way reflects my current job description.  Prior to becoming ill, I was responsible for 12-14 terminally ill patients in a rural part of Texas.  My radius spanned in some places to 50 miles between patients.  I was driving 100+ miles per day.  Because I was driving so much, I wasn’t able to get my charting in at the bedside, so as a consequence, I was finishing my charting at home.  I could be responsible for helping a patient reposition in bed, drawing blood, starting an IV.  I could also be exposed to a number of diseases, viruses and unsanitary or dangerous living conditions.

I am currently looking for any type of work I can do from home.  I used to do telephonic nursing from a call center when my daughter was an infant.  I did health coaching type work, calling patients who were just out of the hospital or patients that fit a specific criteria and discussed ways to remain healthy.  I can still use my brain, my knowledge and my experience to help people.

I still require many doctor appointments.  And I still have vertigo, nausea, pain and days where I just sleep.  And I look like hell.

I am improving.  I have done more this week than I have been able to since starting methotrexate.  But it is a slow improvement.  Too slow for my employer.  Too slow for these bills to get paid.

But it is improvement.  And that is positive.