Friday, September 30, 2011

Moving On

I went into my August doctor's appointment frustrated and left discouraged for different reasons. During that visit I asked my doctor for her opinions around the path she saw for me after she didn't seem to like some of the ideas I brought up. She finally started shaking up some of my treatments and whether or not they worked, I felt like we were trying different things; not just another dosage change or another medication in the same class.

I know I've been contemplating a different doctor for some time, but I have a good rapport with her. There is a lot of back and forth between us. Even though I felt like things were finally changing, I was still frustrated from that visit. I needed to do a lot of deep thinking, but I had/have a great number of things going on and even found myself less prepared for my next visit than I like.

I had another appointment this week and I've finally reached that fork in the road where I can't procrastinate or use my shabby reasoning any longer and must move on. As I entered the waiting room, there was a sign on the window that said she was dropping my insurance. I was a bit shocked, but I also knew that was the big kick in the butt I needed.

We had a nice visit anyway. I told her I don't go out of network and she totally understood. She ended up giving me the names of four different neurologists. We both wanted to make sure that any of those doctor's could handle, let's say, my personality. I found part of our conversation a little amusing when she said she shares patients with one of these doctors and had seen one of these patients the other day.

Alrighty now, what question comes to your mind? Well, I flat out asked her why a patient from the other practice would come to see her. The answer? This is not a quote, but she basically said if a patient is too complicated for the other practice, they will send the patient to her. She grinned as I smiled, nodded and didn't say what was hanging on the tip of my tongue. If I've been questioning my doctor, why would I ever think about going to a doctor that gives away her patients?

I really do like my doctor. She is the best doctor I've had to date and we've really been through plenty together, but I know or have known for some time that I needed to move on. She even told me that if I ever need anything, she would be there and help me. I thought that was really nice especially because I believe that came from the heart.

I know what I've been planning on doing for a while, but just for giggles, I figured I would research these doctors anyway. Three of them ended up being out of network and the one who was in network, was the one who gives away her more complicated cases. Hahaha! I also looked at several of the doctor rating reviews. Yea, there would be no way I would ever even think about going to this doctor. However, while I was doing all of this, I was also gathering all of the research and paperwork I had done last February.

Yes, the first thing the next morning, I placed another call to my next doctor's office. As expected, I was put on the up to 5 days callback list. I like knowing what to expect, but that was another reason for my procrastination in calling this office back. The last time I called the office, there was some confusion in our trying to get together and every time I have thought about calling back, I tried to find 5 days in a row that I have free so I can drop whatever I am doing to take their call.

It's a good thing I have no choice to keep stalling this time. So now I play the waiting game and if there is confusion in our getting together on the phone, I have to keep pursuing it anyway. No excuses now and my phone is practically glued to me.

To finish off my doctor's visit this week, I had to have my iFMLA recertification form filled out again. I guess this is an example of how some doctors may view me as a little challenging, but I need a doctor who will work with me on important things like this. To avoid the same issues I had when I renewed my last iFMLA recertification, I told my doctor that I had the forms and to try to avoid some of the same 'confusion' from the last time, I had pre-filled them out, but also included a blank form if she preferred that.

She smirked as we made eye contact and communicated a lot without saying a word. I don't think she was very happy with the way the whole situation was handled by her office either. She took it the right way and managed it as it was already in my fax by the time I got back to work. This is something I will miss in a relationship with a doctor, but I want a cure! Ok, I'm back to reality now, I know there is no cure yet so I'll settle for a preventative measurement that controls my Migraines for now. Is that too much to ask??

More to come on the journey to my next doctor.


Sunday, September 11, 2011

Insulted at Church

I'm usually pretty easy going and can simply blow things off, but I'm finding it hard to not be personally insulted by something that happened in church today.

While attending mass for the past few months, I've been sitting in what they call the 'votive' room. This is a little room at the back of the church which doesn't have any doors, but is open to where mass is performed. They went the way of electronic candles a long time ago, so there is no smoke or anything funny coming from the 'candles'. It is not the 'cry' room where all of the families with very young, vivacious children go either.

Even though I wear a hat in mass every week, I still sit in the votive room because of my light sensitivities and because some people love to bath themselves in smelly stuff before going to church. This room has really been a win-win solution for me. There are a few regulars who also 'hang out' in the votive room to watch and listen to mass. Some of the people are a little older, some have walking difficulties and we even had someone with an oxygen machine in there once. The most we've had in there at one time was about five people although it will comfortably fit about seven.

Today there were only three of us; a married couple and me. They've been regulars in this room for the last few weeks although they used to sit in the last few pews before settling into the votive room. They don't know I sit in that room because of my sensitivities, but they always see me wearing my hats. Fortunately or maybe unfortunately, today was a day I could smell everything. No, none of those natural smells.

There is a point in our mass when we shake hands. They kissed and then took turns shaking my hand. As mass progressed, she put some lotion in her hand and shared some with him so they could both put it on. That looked so cute as it was transferred by what looked like a little hand shake or hold between them.

Weeelllll, due to my heightened sense of smell today, I could tell it was not hand lotion that they put on. I have a sensitivity to the smell of those hand sanitizers and today it hit my head like a brick wall.

If I am the only other person who they shook hands with, how could I not be personally offended when they use a hand sanitizer right after shaking my hand? What should I do next week if faced with the same situation?

Should I start wearing a face mask as well as my hat every week while sitting in the votive room? Should I sit in a seat that is a little further away from them in this pretty small room? Should I just bump their fists like the athletes do? Should I just wave to them? Should I leave the room before and avoid the whole handshaking situation all together?

I really don't need to shake their hands nor do I think they really want to shake mine. If there are other people in the room, they are going to do the 'right thing' and shake the other peoples hands. I could embarrass them by asking them to use the hand sanitizer outside of my 'sanctuary'.

I've got a week to think about how I want to handle this situation. I really don't want to embarrass them or make them feel uncomfortable, but I don't want to smell this in my haven especially on days I can smell everything. The problem with speaking to them is that they usually get there as mass is starting and scoot out as soon as it is finishing so it would be hard to talk to them. I really don't think it's appropriate to discuss anything during the mass. I could always hand them a note. At least they would know the result of their innocent (yet insulting) action has on me and then the ball would be in their court.

How would you handle this situation? It just happened so I haven't really given it much serious thought yet. I'm sure they have no idea - yet.


Saturday, September 10, 2011

Visible or Invisible

The first time I heard the statement "If I had to choose between an invisible illness or visible I would choose:" posed to me, I immediately jumped all over my answer. Since then, two years ago, I think about this question and try to figure out if I would answer it any differently.

How do you answer it? Would you rather have a visible or invisible disability? Why do you choose your decision?

My answer was and still remains invisible. I think in many ways this gives me some control over my disease that I don't always have. I can't always control when a Migraine is going to hit me, but I can have some control over who knows this about me. Of course there are times when my invisible illness has become more visible and my 'dirty little secret' gets out whether or not I'm ready or willing to talk about it.

My cube at work is really awesome. The light accommodation I have is so much better than when I had my own office. Where my cube is, where the lights happen to be over my desk and with the light accommodations, I have a low light flow when I am at my desk which has not ever attacked me.

However, this does bring a lot of conversations around my lighting throughout the day which definitely makes my illness visible. I have chosen to use this as an opportunity to start talking about having a light sensitivity and then bringing it as far as the other person wants to take it. Sometimes that's as far as it goes and other times, we can have great conversations either about themselves or someone else they know who has Migraines.

I have also learned to keep a few copies of the Understanding Migraines and Migraineurs letter for those who know the deal yet still choose to keep making stupid comments and other things. I have handed out a couple of these letters and it has stopped one person, yet again, from continuing with his constant snide commentaries.

I want to give you another example of why I prefer my invisible disability. I have an incredible nephew, who just started the first grade. He was playing in the park last month when he went over to some boys to see if they wanted to play with him. Their response? "No, you only have one arm." Do you think that's bad? Their mothers responses were "They can choose or not choose who they want to play with." Really? Seriously?

My nephew was born this way. I don't think he believes he is different from anyone else as he can do anything he puts his mind (and foot) to doing. He has incredible self esteem and unfortunately, has had to learn about other peoples ignorance's at a very young age.

Fortunately, his parents are very good about dealing with him and those who know not what they talk about. It's really mind boggling how much discrimination he had dealt with at his age; not only by other kids, but adults too. His teachers have been really wonderful in school too when another student innocently says something that can hurt his feelings and makes him feel different.

As you can see, my nephew does not have the option of only sharing his disability when he is ready to talk about it. He is faced with it everyday and someone can confront him with it at anytime.

My light accommodation as well as my moodiness might 'give away' my illness at times, but I still pretty much have the choice of sharing it with someone or not sharing. I still choose to have my invisible illness where I can have this one bit of control over it.

If you had to choose between an invisible illness or visible, what would you choose?