I had an appointment with my MS neurologist last week.  She had not seen me since February.  I had other appointments with her but she pushed me off on her PA (physician’s assistant) each time….because my insurance is Medicaid and she doesn’t accept Medicaid.  In the past, her office instituted a policy whereas they found that a number of their patients were going without their medication in order to be able to pay her for her appointment expertise – so, she had a plan where those of us who were unable to pay or were on Medicaid were exempt from paying.  That lasted a year and then we were no longer worthy of her time and she stopped the program.  My frustration over this issue is beyond measure – we had a choice to find another neurologist or pay cash for our visit.  Thank God for my lovely church family, who started a fund for me back when I was first diagnosed.  We were able to get the church office to pay for the visit ahead of time.

Please don’t read into my frustration.  I have been on both sides of the issue – having worked for doctors through medical transcription and billing for a number of years.  I know they have a lot of overhead – leasing/owning a building, professional licensing, malpractice insurance, employees, etc. etc.  This neurologist own her building, she owns the MRI testing machine in her building, she gets awarded huge grants to run numerous drug studies for major manufacturers of MS medications and she gets paid by people with insurance or in cash.  My frustration over a $65 fee (Medicare rate) is because she has a whole lot of income, has had a PR team working hard to publicize that she is the best MS neurologist in the city….and yet, those of us who need her services but cannot afford them are left out in the hot Texas sun to bake.

Oh yeah, it’s my fault that my husband has been unemployed for seven years and I am unable to work anymore.

I also realize that a large number of people, including some in my extended family, think that because I’m on Medicaid, I have to take what I can get because I do not deserve more – I’m unworthy based on a lack of income.  I also know that I am considered the dregs and drain on society because of my lack of income – hence, they feel I should take what I can get and get over it.  Quality healthcare is for those who can afford it and they should be treated first.  Oh yes, I get that, too.  Unfortunately, my lack of income is directly related to my MS.  At this point, I am on Medicaid because of my disability status and I will be switched over to disability Medicare next year.  That will bring another host of problems as just as many doctors won’t accept Medicare that don’t accept Medicaid, but we will cross that bridge when we get to it.

Back to my appointment.

My neurologist talked about the symptoms I am experiencing, did a few strength tests on me and then looked at me and said, “Well Tammy, it seems you are worse now than when you were diagnosed nearly two years ago.  Perhaps the Copaxone* isn’t working for you.”

DUH

She would have known this if she’d ever read my chart after my numerous visits and telephone calls with her PA since February.  Obviously, I was again unworthy.  And, she was busy. 

She nearly tripled my muscle spasm medications that I take, she ordered a new MRI for my brain and she decided to put me on Betaseron* injections and to discontinue the Copaxone*.  Unfortunately, the muscle spasticity has not been medicated away – I still have them at all hours of the day and night though not as frequently as before I saw her, they still hurt and make it difficult to walk.  The migraines that we had been able to medicate away have come back, though I believe this to be a result of being off the Copaxone*.  And they aren’t the never-ending migraines that I had before – they may last for a few hours or a day but rarely do they come back the next day.

She also decided to have the lab in her office take six tubes of blood to run all sorts of tests on – the most important being a full autoimmune panel as she thinks we may be dealing with more than one autoimmune disease (rheumatoid arthritis, lupus, etc.).  We are still waiting on their office to send us the results of those labs – they are not in a hurry and we are at their mercy to await the results.

Yes, I am frustrated.  Yes, I do not feel good most of the time.  Yes, I want to get better to be the wife my husband deserves.  And the bottom line is that yes, I want to get better so at least I can be a mother my children deserve. 

I battle with myself over the hypocratic oath vs. the hypocritic treatment I am receiving.  I feel I should be worthy of the best treatments available and the best doctors available for this relentless disease – even if I have to pay cash for my care, I should have the CHOICE.  Multiple Sclerosis is not all that common when you look at the big picture of the number of people in the world vs. those with MS.  Perhaps once I get on Medicare I will not be treated quite so poorly by those experts who look down their nose at me now.  I do not know.  But, I certainly don’t feel like I should be left in a bed in the hallway until space becomes available in the janitor’s closet and ignored by everyone who passes me by.  And that’s truly what it feels like to be on Medicaid.  And to have a world-renowned physician who specializes in MS not realize for nearly a year that the injections I have been taking are not working and I am now worse than I was a year ago because she does not accept Medicaid, she is most certainly culpable and allowed this disease to get out of hand in a short time when it could have been prevented had she taken the time to see me or read my chart.

Not to mention the total lack of support from most of my extended family and some friends.  They don’t want to hear that you’re sick.  They don’t want to even whisper that you have a disease.  Very few of my extended family even talk to me anymore, once they found out about my MS diagnosis.  So now, I’m cut off from the love I once shared with many AND I’m cut off from quality healthcare. 

But I know, it’s my own fault.  I am a drain on people and the system.  I get it.  And when I get upset over all of it, my husband reminds me that it’s he and I against the world.  He will fight for me, he will take care of the things I can no longer take care of and he will work even harder to make sure our children are raised in the way we both agreed we wanted them raised like.  I just keep myself to these hills of Texas and enjoy what is right in front of me – because anything beyond these 20 acres brings me pain and brings our household suffering. 

And to those of you who don’t want to hear about it anymore – I get that, too.  Go ahead and live and love in your little worlds, I’ll be just fine.  I have lived most of my life feeling unworthy and will continue to do so. 

This is not a pity party – this is the reality of my life living with MS. 

*Copaxone and Betaseron are two injectible medications that are prescribed to help limit the instances of MS lesions in the brain and/or area where active demylination of the nerves is occurring.