“Oh Worry, Worry, Worry, Worry. Sometimes I Swear it Feels Like This Worry is My Only Friend…. aka: ‘You Were Never a Sister to Me.'”

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Hello Again,

I must say, I really underestimated how wonderful it is to feel support. Thank you to those who took the time to read and/or comment on my last post. Knowing that someone is interested enough to bother reading my blathering means more than you’ll know.

Today was another difficult day. Ever since I became sick with LD and Bartonella, my relationship with my youngest sister (we’ll call her “Erica”), has done a true 180. It is difficult, and it saddens me.

I remember when I was still trying to figure out a correct diagnoses, and my physician called me to discuss the pattern of my ANA results (I tested positive, though low levels, with an autoimmune disease shortly before I was diagnosed with Lyme), I wanted to so badly to have her support. My “father” (we’ll call him “Bill”) has never been particularly supportive, and my relationship with Erica was fine at the time, so it seemed only natural to me that I could lean on her for comfort.

I remember texting Erica and telling her the results of my ANA were in. She said she would leave whatever party/hangout she was currently attending, and be home within an hour. An hour came, and an hour left, and yet no Erica. When I asked her the next day why she hadn’t kept her promise, she blew the question off and made some comment about forgetting. I then waited for her to ask about the results. Although only a few moments went by, it felt like an eternity. If she asked then she cared, right? It would be OK if she just asked now I told myself. She got up and walked out the door.

For the last few months my relationship with Erica has been null and void. The culmination came when she promised she would sleep at home while Bill was away, then told her friends at her work (who are also my friends) that she was sleeping at her boyfriend’s home. She went over her boyfriend’s and promised to be home by a certain time. When the time she promised she’d be home by came around she didn’t answer her cell phone. I went on Facebook and saw that she was online and messaged her (probably angrily), and I received the response “I’m sleeping at my boyfriend’s tonight. Bye.” This may not seem like much to the average person, but she is well-aware of my history of trauma and PTSD and my fear of sleeping in a home alone. She had promised Bill she would not sleep out, yet so casually was able to leave me scared and in shambles. I did not matter, and I still don’t. Fast forward 8 months, and she has never once asked me about my infections, offered any assistance, or provided any modicum of support. In fact, Erica does not even acknowledge me when she comes and leaves the house now.

Today, I wasn’t expecting to see her when I returned from the grocery store, struggling with many bags. She acknowledged me in some form, yet offered no assistance, and continued painting/watching television. After three trips between the car and the house, I was finally done. Bill had asked for someone to check the answering machine messages, but he was unaware that she was home, so only I had been asked. I asked Erica if she could please do this for Bill as I put away my groceries. I was worried about getting food prepared in time for my antibiotics, and was frankly tired from the trips. Erica responded by saying that she would do it, but not anytime soon. I informed her this would not work, as Bill needed it promptly, and she stopped looking at me and resumed watching television.

Starting to rage inside, thinking of the last 8 months, I tried to hold back, and did a fairly decent job initially. I reminded her about the communal living properties and responsibilities. I frequently clean Erica’s messes, and even though I’m very sick most of the time, complete almost all shared duties. Erica simply won’t participate.

Suddenly an argument ensued and I remember her making a remark about how I “treated her”, which sent me over the moon. I began yelling about how she has “treated me” with my Lyme Disease and Bartonella. How she has never offered support. How she has hurt me. How she has told her co-workers I “wasn’t really that sick”, and refused to acknowledge me for the last 8 months. Erica yelled back, and ended the conversation with “It doesn’t matter. You were never a sister to me anyway.”

Knife to the gut.

I have been there for Erica and will not waste my time going into examples of such, but she knows in her heart, as do I, that I have been supportive of her, and that her statement was a horrific thing to say.

Yet she repeated it two more times before leaving.

After she left, I remember standing there stunned. How did this happen? Am I simply the most unlucky person in the world, surrounded by cruel others, or is it me? Maybe I provoke this in people. Maybe I bring it out in others? Maybe I haven’t measured up to the “sister” ideal she had been looking for. I don’t know.

All I know is, I’m tired of fighting the world. I fight against these infections that have taken over my body and mind, I fight to stay in school, even though my abilities have gone down exponentially. I fight with my immediate family, and now my boyfriend often. I fight to not cry every time I walk into a room and forget why I walked in there. I fight not to fall apart when I can’t remember my debit card pin. I fight the urge to sob when I realize I can no longer multitask. I can’t answer a phone call while shopping at the grocery store without confusing the two.

I fight, I fight, and I fight.

I’m tired of fighting.

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LymeGirl6500… A Story of Sadness, Despair, and Hoping to Find Joy Again

Hello All (or maybe nobody if this goes unread)I was diagnosed roughly 8 months ago with Lyme and Bartonella. As a 28 year old woman in a Doctoral program the thought of having both Lyme and a co-infection was overwhelming, but relieving in a way, in that finally, after countless doctors, raised eyebrows, and mis- or no-diagnoses, I finally had a modicum of hope that with a diagnosis I would become my old self again. I knew nothing of the treatment of Lyme, so I was unaware of the long-term treatment, relapses, and consequences of medications, amongst other problems.

I can honestly say I was hopeful for the first month or so. I knew I was “herxing” (an increase in symptomatology that occurs as the infected cells die off), but then I appeared to flatline. It appeared as though there was little progress, until I was placed on Rifampin for the Bartonella and had a terrible reaction. I became someone I didn’t recognize. I could cry for hours on end for no reason at all, scream all day at family members for the most minute of issues, and knew I was completely out of control of my emotions.

I was lucky enough to, through a family friend, find a psychologist that also has Lyme, and a psychiatric nurse specialist that she works with. They, particularly my psychologist, I think saved my life. I vividly remember the first appointment where she commented about hope. My eyes teared up and I remember saying “There is no hope for me. No one can help me.”

While I no longer feel so hopeless, it feels like my struggles are insurmountable. I have only one surviving parent, that I live with (not by choice), and a day cannot go by without an argument. However, before the diagnoses we never had a particularly good relationship to begin with. I looked at him as a sick and sad mad, with a flat affect, possibly no emotions, and someone who had failed to protect me time and time again.

I’m still currently in the same state, except I had extreme cognitive difficulties, and the complications associated with my infections have wreaked havoc upon the relationship with my one and only source of support: my long-term boyfriend.

So, as I lay here, I wonder if this is just another worthless venture. Another attempt at curing me, the incurable, both emotionally and physically. I suppose I am just reaching out for support, but don’t anticipate any.

I leave you with a summation of my current state of mind, wrote more eloquently than I have the capabilities:

“No, I told you. You only cry for help if you believe there is hope to cry for.”-
Wentworth Miller