What Lyme Has Taught Me~ Lesson One
I've just started taking B12 shots again. The pharmacy was kind enough to give me longer and larger gauge needles than what I was using before. So I had to toughen up and just do it. I am a human pin but at least it is giving me some energy to keep up with my life. It does make me wonder how long I've been dealing with this deficiency. I have always felt to some degree that I just don't have the same get up and go like everyone else. I always thought it was a personality thing. I have no idea until my test results come back. This situation does remind me of how I felt when I first realized I was positive for Lyme Disease.
I was so mad that no doctor thought to test me for Lyme Disease or even give it a moments thought. For so long I was told you are faking it. I even had a nurse one time write on my medical records in the office that I was a hypochondriac and looking for attention. I scoped out the notes she left behind when she wasn't looking and my heart sank. The tears started to well up inside of me. I was not making this up! Believe me I had better things to do with my time like raise my son and run a house.
Now I don't give my doctors that much power anymore. I try to do my research before I enter the office, talk with friends that have seen the same doctor or type of doctor, and I usually give a call to my insurance company to make sure what is covered or not.
The best compliment was when I went to see my primary care doctor and asked him what he thought about ruling about some possible genetic illnesses that I might have besides the Lyme Disease that could be complicating my recovery from the Lyme. He was up front with me and suggested the Rheumatologist to rule out Rheumatoid arthritis which I have in my family on both sides. I tried to think of every option including a Cardiologist and Neurologist. He told me they probably wouldn't believe the Late Stage Lyme Disease would be causing my symptoms and I had no evidence so far of family history that would push us in that direction. I appreciated his candor. I realized a very important lesson that day. Go into the regular doctors office with the facts, no heavy feelings, and do your homework before hand. Be your own best advocate. And in the end he told me he wished his other patients new how to advocate for themselves they way I did that day. I felt pretty good leaving his office. I felt empowered.
And yes to answer your question, I did meet with the Rheumatologist and my first words were, "I was diagnosed with Lyme Disease but that's not why I am here. I have Rheumatoid Arthritis in my family and I want to rule that out." Once I made my objectives clear, I had opened up a line of communication that he and I both understood. Also I had a personal reference from a Lyme friend who saw this Doctor and she came to appointment with me to give support and extra knowledge to work with in case he gave me any trouble. I did have elevated Rheumatoid Factor which is common with a Lyme Disease patient but the levels were not high enough to qualify for RA. I was having lots of joint pain and he did examine me for that and said it was tight muscles and tendons that were my problem. So he did prescribe a minimal dose of Tramadol which I did end up using for over a year. Now I don't need it anymore since going gluten free. It took over a year of being gluten, and wheat free before I could benefit from it being out of my system. I'd rather not eat gluten than be on a pain killer for the rest of my life.
I just wish more Lyme Patients could benefit from an Advocate who understood their journey. It breaks my heart that more and more Lyme Patients are ending their lives because they are so overwhelmed. Recovering from this disease is such a long process. It seems to suck the hope and joy right out of you. I just hope one of these days I can be the advocate for another Lyme Patient. Then I can say all of this craziness has come full circle and been a true benefit for someone else. I guess that's why I tell my story and try and listen to my fellow Lymie's. I want to "Pay it forward." If you haven't seen that movie you should. The lesson it shares is ground breaking and simple.
I was so mad that no doctor thought to test me for Lyme Disease or even give it a moments thought. For so long I was told you are faking it. I even had a nurse one time write on my medical records in the office that I was a hypochondriac and looking for attention. I scoped out the notes she left behind when she wasn't looking and my heart sank. The tears started to well up inside of me. I was not making this up! Believe me I had better things to do with my time like raise my son and run a house.
Now I don't give my doctors that much power anymore. I try to do my research before I enter the office, talk with friends that have seen the same doctor or type of doctor, and I usually give a call to my insurance company to make sure what is covered or not.
The best compliment was when I went to see my primary care doctor and asked him what he thought about ruling about some possible genetic illnesses that I might have besides the Lyme Disease that could be complicating my recovery from the Lyme. He was up front with me and suggested the Rheumatologist to rule out Rheumatoid arthritis which I have in my family on both sides. I tried to think of every option including a Cardiologist and Neurologist. He told me they probably wouldn't believe the Late Stage Lyme Disease would be causing my symptoms and I had no evidence so far of family history that would push us in that direction. I appreciated his candor. I realized a very important lesson that day. Go into the regular doctors office with the facts, no heavy feelings, and do your homework before hand. Be your own best advocate. And in the end he told me he wished his other patients new how to advocate for themselves they way I did that day. I felt pretty good leaving his office. I felt empowered.
And yes to answer your question, I did meet with the Rheumatologist and my first words were, "I was diagnosed with Lyme Disease but that's not why I am here. I have Rheumatoid Arthritis in my family and I want to rule that out." Once I made my objectives clear, I had opened up a line of communication that he and I both understood. Also I had a personal reference from a Lyme friend who saw this Doctor and she came to appointment with me to give support and extra knowledge to work with in case he gave me any trouble. I did have elevated Rheumatoid Factor which is common with a Lyme Disease patient but the levels were not high enough to qualify for RA. I was having lots of joint pain and he did examine me for that and said it was tight muscles and tendons that were my problem. So he did prescribe a minimal dose of Tramadol which I did end up using for over a year. Now I don't need it anymore since going gluten free. It took over a year of being gluten, and wheat free before I could benefit from it being out of my system. I'd rather not eat gluten than be on a pain killer for the rest of my life.
I just wish more Lyme Patients could benefit from an Advocate who understood their journey. It breaks my heart that more and more Lyme Patients are ending their lives because they are so overwhelmed. Recovering from this disease is such a long process. It seems to suck the hope and joy right out of you. I just hope one of these days I can be the advocate for another Lyme Patient. Then I can say all of this craziness has come full circle and been a true benefit for someone else. I guess that's why I tell my story and try and listen to my fellow Lymie's. I want to "Pay it forward." If you haven't seen that movie you should. The lesson it shares is ground breaking and simple.
This is great advice, Angele. Thank you. I love the idea of laying it out and setting the boundaries when you go in to an office and wish I would have done that on many occasions myself. It would have made a world of difference. Thinking of you and hope you are well. XOXOX
ReplyDeleteThank you so much for this. I have been seriously challenged to deal effectively with doctors over the last few years. Having Lyme disease is hard enough, but the work involved in coordinating all the various medical providers and protecting myself from the sometimes negative messages is really draining. I have been close to giving up on more than one occasion. Thank goodness for good friends who understand what I'm going through.
ReplyDeleteEleanor
I thought for the longest time Kathy that you just don't argue with the Dr. And Dr. knows best. I am not saying they don't know a thing but it's always good to be educated about your own body. I was put on several meds when I was younger that made so sick but I kept sticking with it anyways because I thought that's what you are suppose to do. I know otherwise now. I just hope this lesson saves others from the same heartache. Eleanor believe me you are not alone. The coordination alone should prequalify use to run the country! Its lots of work and I can't image doing it forever. I do sympathize with you :) This illness is hard work bottom line! Take care this week, Thinking of you both
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