Sunday, October 19, 2014

I Hold a Grudge

Rant alert. Over the past month, I've been thinking about how people have started to treat me differently since my heart paused in August (first time it was caught on a monitor), and I got the pacemaker. I've been sick for 3 full years. Throughout that time, I've repeatedly told doctors, acquaintances and family members of my symptoms........particularly heart ones. Do you know how many times over those 3 years I was blown off by everyone except 1-2 doctors and my immediate family? How many times I was told that everything could be cured if I'd try massage, accupuncture or stress relief? Too many to count and I'm very angry about it.

It's like people hear the words "chronic Lyme" and think "Oh that's not serious, she's just exaggerating. Lots of people have Lyme. It's just some joint pain." NO!!! It isn't!!! Hate to burst your bubble guys but you are all at risk to get this just as much as I was and ignoring me and pretending this doesn't exist isn't going to protect you from it. You don't think my symptoms or those that others with Lyme have are serious? You don't want to hear about it? You think that massage can help my heart to stay in rhythm, stop my fevers, raise my BP, heal my autonomic nervous system? Okay.......I hope you never get Lyme, but if you do, maybe you'll realize how insensitive and hurtful those comments are to someone who has chronic Lyme; someone who has legitimate and serious medical symptoms and needs legitimate medical help and can't get any because so many doctors have the same attitude as you: an attitude that stems from pure ignorance.

Since getting the pacemaker, nobody has said a word about massage, stress relief or acupuncture as a cure-all to my disease. Most people are no longer doubting what I say regarding individual symptoms. I'd bet that if I needed to see a doctor now who doesn't know me, they'd be far less likely to blow me off and dismiss my symptoms or attribute them to anxiety and depression. Why is that? It's solely because of this little pacemaker device jutting out of my skin and the reputation of the doctor who implanted it; not because of anything I say or do. I'm still a piece of paper and a test result to most doctors (and even some acquaintances) not a human being. The opinion of another doctor combined with a machine.......a more valuable and taken more seriously than my word, and that's very sad. I knew exactly what my heart was doing for 3 years. I was accurate. However, in order to get help I had to prove everything I said objectively. How many people don't have the physical or emotional energy to do that and therefore never get appropriate help? Thousands? Millions?

So now that most of my friends and acquaintances are no longer blowing me off, everything's fine right? No. I hold a grudge. I don't forget easily. I will never have the same relationship with the acquaintances that only truly believed that my symptoms were real after a doctor that they've never met confirmed my suspicions and treated me. These people know me!! They should have believed me! Not some stranger they've never met just because he has MD after his name! I needed support rather than suggestions of treatments that had absolutely no chance to help me. News flash: when you suggest a treatment that does not match up to the seriousness of a persons' symptoms it's belittling, trivializing and hurtful. So don't do it. Think of it this way: If you come to me one day and tell me you have cancer, MRSA or diabetes, how would you feel if my response was "You're exagerrating. plenty of people with your disease feel completely better with Reiki or massage. Why are you even bothering with chemo/antibiotics/insulin?" Does that sound logical or appropriate? Yet plenty of people with Lyme face this "advice" from friends and even doctors constantly.

I'm no longer going to tell these people how I'm doing. They didn't care before and I can't be certain if they truly care when they ask me now or are just trying to make up for their inappropriate assumptions from the past. If they really want to know how I'm doing they can try searching through the hundreds of Lyme blogs that exist and figure out which one is me.

The fever last week accompanied by severe pain was a Lyme herx and not a pacemaker infection. How do I know that? How else? I gambled with my life once again by waiting it out and trying my normal herx remedies to see if it would help: alka seltzer gold, a few doses of Quina and Mora (added into my consistent Lyme protocol), Benadryl and tons of fluids and salt. I knew if I called my cardiologist or anyone at his office, there would be no way that a "Lyme herx" or chronic fever would cross their minds. They would likely attribute the fever to the recent pacemaker and remove it. I really need this pacemaker and I don't want to go through another surgery over my "normal" chronic fever and herx reaction to starting a new med for Lyme. The herx remedies worked and the fever ended by the next day.

Another problem this week has been with exercise and my heart. When I walk or jog and get my heart rate up to over 170, I start to feel an irregular rhythm hit so I stop moving. The irregular rhythm hitting near my maximum heart rate is new since the pacemaker. After I stop, my pacemaker snaps me.....HARD..........and gets me back to my paced maximum of 155. I don't know what that is but it's scary and makes me fearful to exercise to the level I normally would. I suspect that I'm being paced at a high voltage ventricularly because my pacemaker is detecting a sudden drastic drop in HR and may see that as a pause. I used to drop from near 200 to 30's in a second or two during exercise prior to the pacemaker. I couldn't flag my worst episode on my heart monitor because I didn't have the flagger with me that day, but I have flagged two less severe but similar episodes since then. If I don't hear from anyone, I'll assume it's normal.....I'm trying to be more trusting of the cardiologist.