Monday was the start of my “off treatment” antibiotic to get me through the week so I won’t be in as much pain. I didn’t have much time on Monday to tell if it was effective or not, since it was rather discouraging not only to me, but to the Lyme community. Symptoms tend to flare out of control when stress and anger is brought among us, and that is exactly what happened.
I took my medications and then headed toward work. I was happy and ready to see how this week will go. As I have said, this is the time that will determine if I can get my powerline out in the next few months.
It wasn’t too long after I got to work that I got the phone call. I wrote my post “Flash Steaming Mad” with details of what happened, but long story short, a particular person took the time out of her busy day to call my Dr’s office and complain about my blog, stating that I disclose protocols, dosages (not remotely true), and my pictures of my protocols.. just a bunch of complaining, even though I have disclaimers up the wazoo and have never given any names. They requested because of this person to change up my writing, and take my pictures down. This would take hours upon hours to change MY story. I was not impressed.
The detail stuck in my head that was said in the phone conversation. On my FB wall. Who knows who Kimmiecakes’ real identity is, and who my doctor is? I dwindled down my list of other patients, and it dwindled down to one. One that I know. One that I thought I was in good terms with, but apparently I was considered a threat in some way, shape, or form.
With a little background information without disclosing too much, when I first started writing, she told me to not blog because it would interfere with HER story. Huh? I thought we were all part of bringing awareness to this disease, and sharing what we are going through. She has knocked me down over and over again with little and very big jabs ever since I started seeing HER doctor. Many times I had asked for advice, or spoke of treatment in general as she is way further ahead in treatment than me and I felt I could learn a lot from her, but she always reiterated and it all came back to being the sicker one, like it is a competition. News flash, you can win, darling. I for one actually don’t want to be sick. For someone who claims to be “the worst case my doctor has ever had”, there was certainly enough free time and determination to call and complain about me.
Like I said, symptoms flare. I got very emotional. I did everything to hold it together but I was beyond angry. My body was shaking like hell and my head was pounding. My body was screaming at me. My parents tried their best to comfort me in their disbelief and anger that someone would go out of their way to hurt me, but I just could not “goosefraba” this away.
I just cannot believe someone who claims to be such an advocate with Lyme would turn on a fellow Lymie and try to silence my story. Over and over again taking jabs at me. But this broke the last straw. I thought we were all on the same team here? We all need to stick together! It is absolutely disgusting to me that this even happened. Why?
I finished up my work the best I could, then went to the bathroom before I left. Apparently, with the anger and sadness, I pissed my pants. Yes, you read right, I pissed my pants. I didn’t even know I did. My body was just out of control. Seriously? I wanted to get a tea at the store, but Little Miss Squishy Pants had to go home and change her pants and undies.
I called Dave on my way home, crying and I told him what happened. I think he was trying to process the ridiculousness that I had faced, and said we would talk about it as soon as he got home. About an hour later, I received a text. “Do not delete anything until I get home.”
We discussed everything as soon as he got home, and he told me to remove the protocol pictures, which no one would actually see even if they held up a magnifying glass, it was just to show all the highlighter colors, but we need to respect if someone could decipher it, as they could be liable. Understandable. I hold the highest respect for my doctor and his practice. Dave then said to me, “never change your story, don’t change who you are to appease anyone. This is your story to tell and it needs to be heard. Don’t you worry”. I obviously was in no position to go through months and months and change my story for the time being. He was bullshit. Bullshit about trying to change my life and my story, deleting bits and pieces of what I have gone through. He was bullshit that it was impacting my health. In a rage, he called the administration but they were already closed. It is probably for the best because the conversation wouldn’t have been so pleasant. He wanted blood for what was done to me.
Pictures are gone. There is no associations or dosages although there never were. Still have disclaimers up the wazoo. Said person deleted from my page. As I always say, snip snip, trim the fat.
I realized how burnt out I really am after this day. My legs were like rubber and my head was still pounding. My stuttering came back and I couldn’t stop shaking or stop the tears building in my eyes. I tried everything I could to cheer up. A movie, even online shopping. Shoes. My addiction that always makes me happy. But it just wasn’t satisfying enough to fill this hole in my heart that I felt, but I certainly did try.
After my post about the days events, I got so much positivity and support, and realized how many people love and appreciate my story. The informative posts to help others with similar issues and want to gain knowledge. Lymies and NON LYMES WANTING TO LEARN ABOUT THIS DISEASE. It made me feel like people really do care, and I needed that desperately. Even days later as I am writing this, although I feel better, my eyes are still watering, my throat feeling full, and I am holding everything back to not cry again.
That night I prayed. I never really do. But I did that night. I prayed people would not bring their negativity onto me. I prayed for a better month, a better tomorrow. I need this more than anything. This month means getting my line out or not. I need better progress. I cannot have my mind in a bad place. I need to focus on good health and healing.
I do feel like I am in a better place in my mind now even though I am still mad. Obviously.
I need to say to you Lymies.. please stick together. We all have a terrible disease that isn’t getting the attention that it deserves. We NEED to get the word out there and each and every one of us has a different story to tell. Although we all have a different story, we are all in the same boat. Hoping for remission and our lives back. Don’t forget to love one another.
End rant. xo