February Part 12 – Lymies Don’t Unite?

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

26 thoughts on “February Part 12 – Lymies Don’t Unite?

  1. It’s sad how people can affect us so drastically, especially with how vulnerable we are when we are going through hardships, major changes or traumatic events in our lives, and it’s hard and difficult to not let it affect us.

    For a long time, I would easily be affected by others when I was just trying to be me and move through this experience. It would affect my everyday, my every being.

    I have learned this, you can’t ever control others, there are always going to be people with their opinions and thoughts no matter how good, bad or indifferent you are. It’s important to just keep doing what you are doing and not let anybody stop that.

    Also, I think it is sad that there is so much this way is better then that way in the Lyme Community, when we are here to support each other, that’s the whole part of human existence. We are all together in this world and moving through our challenges and hardships.

    My point is, keep doing what you are doing and remember to stay strong.

  2. Keep doing what you do, Kim. Sadly, Lymies don’t always unite as we should. You’re helping many here, and I know I’m not the only one who has trouble reading that is grateful four what you do. Many thanks Darlin!

  3. Keep your good work. It’s helping me a lot. I am so sick that I don’t see much friend and your daily email help me to go through that horrible disease. I am frustrated that someone is bugging you like that. You don’t need that. I wish you a peaceful rest of the week and month and enough improvement to have you i

  4. What a selfish person, does said person realize how your STORY has helped so many people. This person is obviously threatened by your talent to write, and allaberate not only your story but advice.. Omg, they are so in competition! Who the hell would even want to compete with such a dreadful disease. I am so sorry this person made you feel the terrible way you felt ( I’m def feeling rage as I type).. I have recommended your blog to my family members in HOPES they would read as you have the gift to write and explain what I fumble around to say.. Wow, such a selfish person- who is most certainly insecure, not on our team with spreading awareness on Lyme disease- because if they were they’d have Pom poms waving in the air – all the time and effort you have put into these blogs – and the fact that you sugar coat nothing. I look forward to each read, like a good book you just can’t put down. I have laughed and cried reading your journey. I’m still grateful I stumbled across your blog, your journey. I will continue to look forward to reading them. Again, I’m sorry this saddened you so much, and I know you are going to come out on top. You are the gifted one, that is smart beyond your years.. Keep It Moving ( KIM) for short, and no doubt in my mind that is exactly what you will do, Keep It Moving!

  5. It will all work out. Maybe “the other patient” is suffering from some of the psych symptoms for this horrible disease. Maybe this whole deal is to remind us lymies that we still need to protect our LLMDs (you didn’t put yours at risk, but it is a good reminder–I don’t think those who are newer the LD community realize that their doctor, in many cases, is putting his/her practice on the line to treat us). In any case, the bright side is that you HAVE continued lyme education, just in a different way. ((hugs)). BTW, you’re not the only one who has peed herself under stress 😉

  6. I am so happy to see everyone commenting and offering support. Kim, you’re blog is REAL. You’re REAL. There are many Lyme blogs out there, but people take long breaks because they are sick and can’t keep it up. You post almost every day, without fail.

    This matters, Kim. You matter to so many of us, as is clear from the comments above.

    I am certain that this person that is still reading your blog (no doubt) sees all this and feels ashamed. Jealousy is the worst sin and will ultimately ruin your life. She must be an absolutely miserable person.

  7. snip, snip,..cut the fat. You got that! Kim, even though I have healed by alternative methods for a few reasons (allergic to antibiotics, mostly penacillin) have had this disease for 24 yrs and am multi susceptible to Lyme, mold, etc.) I do wish for a cure or some relief to others with this disease. I enjoy reading your post (you are real) and am also looking for the unicorns for you with your treatment……….as you say ‘snip, snip…cut the fat’ we all have that choice. That was a big part of my recovery. Besos mi amiga, Kiki

    • thanks! I will get there. And I think it’s great you are doing herbals! I have incorporated some into my treatments. I started with a combination as I saw a naturopath, whom I think is wonderful! They are seriously underrated. And anything natural is a great thing!

  8. I don’t know you and really don’t know your story. I really hope that I can get to know both. I cheer with excitement when I hear that someone is getting better and beating back this disease. My heart breaks every time someone finds that the battle goes on. I don’t compete with anyone. I know without a doubt that there are people out there that are way sicker than I am and pray I never am. There are also people out there who are not as sick as myself, to that I say “thank you Jesus”. I am sorry that you have had to go through this. I get so confused about all the different treatments out there. Hearing about different things that work for others, gives me hope. I understand how so many doctors need so much secrecy. But for someone to go to such lengths to cause trouble for you, I just can not understand. I can not grasp on lymie coming against another. To me that borders on pure hatefulness. I could go on, but won’t. I pray with all that is in me, that your news is great news for you and that you continue to beat this disease back. Congratulations with how far you have come. Much love, hope and peace to you. I for one, back you, if that means anything!

    • It means a lot! It is hatefulness, and it is unfortunate. Other than the phone call from my doctors practice, I think being blindesided when you think you have built a decent relationship was terrible. I always try to make friends and apparently I was not.

  9. Dear Kim, I was so saddened, AND Furious!, when I read what has happened to you. I was worried that you would want to stop writing, and that would be such a loss to all of us who follow you and who benefit, Enjoy and APPRECIATE your posts…I hope you are not too discouraged and that you will continue to keep writing about your journey!!! That was a very unkind act on behalf of the person that contacted your Doctor. I feel sorry for her if she is tormented by the idea that you are helping so many others coping with the same disease. Put into perspective, there is only one of her, but so, so many of us that want to keep hearing from you!!! I am sorry this happened to you Kim, but you are a Warrior, and I am sure you will keep on keeping on!! I am grateful for, and look foward to, all of your posts!! They are full of warmth and humor, as well as good, sound, reliable information that you so generously take the time to provide…You’re a Warrior and a Sweetheart!

  10. I am so glad you have your husband, family and the better part of any person with one bit of commen senses support. It helps tremoundsly when someone is out to inflict pain with thier behavior. Please do continue to be you and encourage others. I am unable to read most days so I sometimes save up your posts or struggle through it to reach a goal for the day. You are an inspiration. Finding your blog when I first began treatment last year for chronic nuro lyme helped me to not feel so isolated. Thank you for stepping out and taking the hit, on my behalf. You are a very talented and strong young lady. Well wishes and prayers said for any negitive to run the oppisite direction from you and yours. Looking forward to your next post.

    • Thank you Heather! Neuro Lyme is not very fun at all, but I assure you it will get better. It takes time but once you find what works for you,, you will feel a lot more clarity. I have better days (still not 100%) and still have really bad days, but it is nothing like a year ago. I’ll keep kicking butt and you will too.

  11. Kim keep it up! Don’t let anyone dictate what you do out of their spite and meanness. Your posts are enlightening, humorous, and give us a glance at what it is to have lyme and it needs to be called attention to as well gives you a documentation of what you have gone through. I love your posts, don’t stop. Continue your healing! De

  12. Oh Miss Kimmie, it saddens and angers me that you even have to ride this emotional roller coaster. Like you don’t have enough already! I love your blog and the way you write. Don’t stop, please. Don’t change your ways; just keep being the cool lady that you are. You are helping me and so many of us. And please tell Dave we think he is pretty amazing too!

  13. This happened to me on my blog too. There are real haters out there and the fact is it’s usually fumed by jealousy, Lyme rage, general misery in life, or something else that has NOTHING to do with you. You inspire so many people with what you write and at the same time you are healing your own emotional aspects of the disease. When this happened to me I thought my heart would pound outside of my chest I was so pissed. WHY CAN WE NOT SUPPORT ONE ANOTHER? But then, you come back down to earth and realize that it’s sad they are in their own misery. I actually responded to my hater a couple of time and finally ended with a “and I lovingly invite you to no longer visit my blog if it bothers you so. After all, it is a choice.” A pleasant FUCK OFF, and it worked. xo Andrea

    • Yep. Too much negativity. I learned being angry doesn’t make it better by giving it back either. Solves nothing. Lots of bad things going on in the Lyme community right now with others too. Lots more love needed amongst us!

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