Now that I've started to feel just a little bit better and almost 6 months have gone by I expected to be a lot better by now. I hoped that I'd be back to work, or on a new path. I love my son and I appreciate this time, but I definitely didn't expect to be recovering at this point in my life. And now that things are starting to be a little more clear I'm trying to remember not to only think about all of the things that went wrong, I am trying to think about some of the wins.
So, I'll go back a little bit more. Let's see, tremors, ambulances, MRI, seizures, brother visits, bad doctor...oh wait. Bad doctor, let's go back to that. You see, it turns out that doctor I had at the very beginning wasn't so great. I had sought out other opinions, but I stuck it out with that very first doctor because I had hope in the system that he knew what to do. He was the one that put me on that zombie medicine. Well, it didn't work. It didn't work and caused some really strange side effects, like hammering nails (I'm actually pretty handy, I braced a shelf to the wall) at 3AM walking around yelling, deciding to burn papers in the fireplace.
The thing here, that I only realize now, is that if you don't have someone to walk into these appointments with you - you miss a lot. I had to have someone sit in the car with my baby or sit in the waiting room with the baby, so I was often in the exam room alone. I kept telling the doctor about all of the terrible side effects, but he just kept telling me that I was getting so much better. He was SO convincing. I never realized he never asked me how many seizures I was having, or what my quality of life was like, he just kept saying, it's getting better. But...he didn't have any proof.
But then he did have some...or so he said. We repeated an EEG and he was excited. Actually, I think he would have jumped up and down if it were appropriate. And he said there was some improvement from my test. (Quick disclaimer here - if you were in my life at all during this time you knew that everything I did was in sssllloooww motion. I walked slowly, I talked slowly, I was in jello. There was nothing normal about me at all. Even my eye movement was slow. AND I was still having multiple seizures daily, no matter what the EEG said.)
But, I was happy. Improvement was good! But the medicine was so bad. So I pleaded with the doctor once again to listen. Could you please change the medicine, there has to be something to add or change. He said he would add something to help. OK, great. Help is good. I wanted to change, but help is good. I'll try that.
It was about this time, that I started to realize I was being handed a piece of paper each time I left the doctor's office. It was something called "my chart" I kept throwing it away because I didn't really care. I trusted the doctor and was receiving care.
Flash forward. Nothing was getting any better. Seizures continued and now I knew I was not going to be able to return to work, I was going to lose my job and had to apply for disability. I needed to get off this medication. I finally signed up for the my chart because I knew the Neurologist wanted me to stay on the medication so badly that he was likely to tell me to switch to a new doctor.
When I signed up for my chart, I was SHOCKED to see that his notes reflected my complaints as "mild irritations" and that my seizures were subsiding. WHAT??? He never even asked me? How can a doctor put something in your record that is - flat out- just his opinion! I felt lied to and betrayed! I was so angry.
I immediately sought help from my Psychiatrist to continue medication and then found a new Neurologist and made an appointment. It took days to match up a Neurologist with my insurance provider, to make an appointment, to make sure I had someone who could watch the baby and drive me - it was so stressful it was enough to cause a seizure. What insurance companies don't tell you is that they don't update their systems very often, so you have to call the doctor's offices right after you call them to make sure that they are in network, because if you don't, you'll make and appointment only to find out that they don't really carry your insurance!
So an appointment was made after 2 days of searching and calling within a certain distance of my house so that I could make this work - God help me! I go to the Psychiatrist and update her, she is pleased I have an appointment, she will keep helping with the meds and with the disability form.
1 week later I get a call from the new Neurologist that they have quit their practice. My perfect house of cards had come tumbling down. I curled up into a ball and cried my eyes out. It was the only doctor on the list from my insurance left that would work for our family. We knew that the following year we would be on Randy's insurance but that meant that any new doctor would charge us the full rate for any visit in 2014. ($300-$500) and that did not include tests. Most likely any new Neurologist would want to complete his/her own EEG.
What were we going to do????
We talked it over. Full price was the only way to go. Then my dad called. His friend had epilepsy years ago, she and my dad had talked recently. She gave him the name of her doctor because she had a lot of success. It just so happened that we thought that was the name of our next door neighbor's doctor. (She also turns out to be the doctor of a very good friend who sees her for migraines). So, we decide to go with her. We are told she's the best!! Let's roll with it. You can't put a price on health and if she's that good, let's get her.
So, I call and make an appointment knowing full well that without my job and knowing that Randy started a new job, financially, we were going to be in a bind until we figured something out. My first question was, "Is she taking new patients?" The answer was yes! Nice. My next question was, "Does she take Randy's insurance for 2015?" The answer was yes! Awesome, we are on a roll. My next question was, "what is her full time rate?" Ugh...you don't even want to know...but then the receptionist asked me what my current insurance was and I told her and she said that they took it and that my insurance company must not have updated their system!!!!!!!!! That had never happened the other way around before!!!!
I couldn't believe it! Amazing, so it was going to be a copay of $35. Nice.
And this doctor is on her game.
And I'm starting to feel a little bit better.
And I don't want to end on a sour note...but well, yeah I guess I am.
You see, it's been almost 6 months of this journey. And I remember when all of this first went down.
I thought that in 6 months I'd be free.
I'd have this figured out. I expected this to be resolved and over.
And I'm still at home with Chance laying next to me while I type.
I'm still in my stay at home mom uniform with a knotty bun tied up and haven't showered yet today. The slow-zombie-ness is gone and the seizures are getting better but the sadness and loneliness is kicking in high gear.
That's the thing about feeling a little better and being stuck. You're still stuck. Only you're stuck and feeling a little better saddled with all the emotions you were too busy to deal with while you were in crisis mode for the past 6 months. And you don't feel good enough to do much more, only good enough to climb the stairs without breathing heavy.
I try to look beyond, like what are my next steps if I get better, what kind of work could I do? What will my future look like? Could I consult? Could I start a new career? Who am I? Who do I want to be? You know simple questions like that in-between naps and posts to Spencer's Newsgroup.
I guess I'm just putting it out there...
I've had a great time over the past couple of weeks being surrounded by friends and my mom and now I feel alone again. I'm just tired of the waiting game. I expected this to be over by now, and that was a big mistake.
I don't want sympathy, quite the opposite, actually There are people with much larger issues.
It's just honesty, plain and simple.
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