Mid-October Update

Posted on 12. Oct, 2010 by in Journal

Today finds me very sad and discouraged. I miss my family and it seems like when you need people the most they just are not there. I am not sure if people are scared or if they just don’t know what to do or say. I am tired of spending day after day in bed feeling sick. The walls of my small house are beginning to close in on me. I am tired of everyone telling me what I need to do and how I need to do it. When I take the time to try to enjoy something that I have to do for my family like take my daughter to gymnastics, then I pay for it for days after. If I get up with my kids in the morning then I can’t do anything with them in the evening when we are alone. I hate that my kids are living off of pizza, fast-food, cereal, etc.. because I don’t have the energy to cook good meals.

It was scary this past week when I must have taken a fall, (I often get too weak or dizzy and simply pass out) I opened my eyes to my children above me trying to make sure that I am okay. This breaks my heart. They should never have to witness this and I fear the internal damage it is doing. I have not had a fall for awhile, but I was just doing too much again and wearing myself out.

I have been evaluated by my neurologist this past week who does not think that I am having seizures. She did not deny the fact that I have Lyme disease which was good, but she said that the symptoms that I am having are probably from the damage that the disease is doing to my body. She explained that the disease is damaging my nervous system and the pain that I am feeling is from all nerve impulses and messages going haywire or something like that. She had a whole new cocktail of drugs to try and told me that my days will get brighter. I will talk to my DR. before starting any new meds. Though I didn’t leave feeling awful like I have in the past, I am still not sure how to absorb everything. She repeated my MRI which came back normal and I must say that I am extremely happy about that.

The thing with Lyme disease is; When people look at you they don’t see the sickness, they have no idea what you are going through on the inside. I can’t remember what it feels like not to be sick anymore. My brain is forgetting much of my past and I am scared that one day I will wake up and not remember anything. I try to remember the good things but even they are a little fuzzy at times. Who would have thought that I would be dreaming about having a stressful senior year of college and cramming for finals… I would do anything to be back in that position again. I am disappointed that I ever complained about such nonsense.

The minute I start to move around a little bit then everyone thinks I am doing so good, but that is just not the case. I am trying to internalize all the pain and suffering so that the people around me don’t always have to see it. I don’t want my children to see their Mom like this anymore.

I am waiting to see the Dr. today I took myself off my injections for one day to give my body a break. The doctors here are not real comfortable with me getting this stong medicine pumped into my body every week and fear that I might be getting an infection or that I am not absorbing the medicine correctly. I should be reaching the point where I should be improving and I am just not doing that. My body is tired of putting a medicine in me that makes me more sick and where I’m just not getting positive results, it is very frustrating. I am sorry to say that giving up treatment has crossed my mind a few times this week, but I refuse to let the disease win! I cry a lot and get down and will talk to my Dr. about this today. I am going to see if he will call my Lyme specialist in NY and talk with him about possibly moving to the next step; IV’s. I refused them up until now but after the literal pain in my ass, I think I might be up for it. Who knows though….. I might get the IV and wish that I could go back to the injections. As you can see there is no winning answer in this situation. Either way it is painful and a test of my strength and my bodies ability to fight. One thing I know for sure, I will fight, it is my body keeping up that I worry about.

I love those of you who are here with me in this battle. I feel the love and prayers and I know God is watching out for us right now. My husband is extremely tired but continues to remain positive and is an endless motivator to get better. If it were not for him, I don’t know where I would be right now. There are many nights that I fall asleep crying to him rubbing my sore muscles for hours. It is often the only thing that will settle me down and keep me out of the hospital. I am grateful to have him as my partner and my friend through all this misery.

I can’t wait until the curtain closes and opens again to my new beginning.

Treshon remains well and strong. He begins to see all the specialists soon to rule everything out. I will keep you updated on his progress, and right now he has all the meds that he needs. I make sure of that and go without so that he can have whatever he needs.

Peace Love and Happiness!!

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