Being Diagnosed - The Beginning of a Journey

I thought it would be a good idea to start a blog just to update not only my family and friends on the things going on in my life, but also to put the awareness out regarding Chronic Lyme Disease. I wanted to express how I’m feeling and describe the motions I am going through hoping to bring light to others experiencing a similar situation. I am in no way shape or form a writer by any means so please forgive me for all my mistakes. Originally I started to write this when I was diagnosed back in July, but as most of the things in my life, they are pushed off or forgotten because my to-do list is longer than Santa's naughty/nice list. I can't remember ANYTHING! I have to write myself notes just to remember to read my own list!

Last year (July 15th, 2009) I was diagnosed with Chronic Lyme Disease but I have probably had it for a very long time already. I do not know when I got this terrible disease but I do know it had to have come from a tick bite at some point in my life. It is so complicated and disturbing that I won’t even go into all the details of it. I can refer you to several websites (http://www.ilads.org / http://www.lymedisease.org/index.html) but it’s probably just as easy for you to Google it. There’s recently been quite a few news articles out regarding the topic due to a new documentary film released called “Under Our Skin” (http://www.underourskin.com/).

My goal is not to get a whole lot into the facts of Lyme but to enlighten you of how it has personally made a huge impact on my life and my role as a mother. A small part of me thinks it’s a curse, the other part of me believe it’s a blessing. Depends on which day you ask me and how I’m feeling. I just try to take it one day at a time, one step at a time.

It’s a curse to me because it’s debilitating my body and not allowing me to be the active person I used to be or the mom that I want to be. It has affected my entire body as well as my mind. There are days that I feel like I can’t move, think or speak. Other days I feel as though I can "pass" as normal despite all my aches and pains. Most days just do what I can to get by and take it one day at a time. I have learned how to almost ignore the daily health issues and pain I endure. It's been such a part of me for so long that I began to think it was normal. I somehow function through the day, but wonder at times how I did it when it's all said and done. Sometimes I don’t even remember the day I just lived or even a few moments ago. My brain fog seems to increase day to day and short-term memory loss is another symptom I really don’t appreciate very much. Word recall is frustrating since I am a person who likes to express myself. I try to voice my opinion about something and mid-sentence can’t remember the words to appropriately express my thoughts. Even better is when I lose my train of thought right there and then! All in all, I do my best to stay positive but there are days it's hard to do that.

However, I say it’s a blessing because it forces you to appreciate life overall. I believe that we are only given as much as we can handle. So, that being said, I know no matter what happens, it all exists for a reason. What that reason is could possibly remain a mystery...or not. Trails and tribulations are given so we can overcome them. I don’t have to understand it, I just have to embrace what has come my way and find a way to get through it. I have also seen that I am able to come to terms with the disease now that actually know what it is! Prior to that, I was severely frustrated with several doctors not knowing what I have and basically tell me I’m normal, I'm fine but maybe mental and a bit crazy. I was starting to feel crazy being told it so much! I knew that I felt there was something wrong with my body but no one could tell me what. I trusted my gut and continued to do more research. I was put on so many different drugs and medications that I could never pronounce. All of which mostly have to do with your nerves and mental state. I now know that this disease has also affected my brain and in turn I am not crazy, just ill. It helps me realize that I am blessed with so much in my life and this is just one hurdle I have to get past in order to enjoy all my blessings.

So where do I go from here? Since being diagnosed on July 15th, 2009 I have been on antibiotics. The long-term antibiotic plan is at least a year, I’m told, if not more. This will all depend on how well my body responds. Currently I’m on 3 different antibiotics and a ton of vitamins and supplements. I do feel slightly better but not as I would hope to be. My eating habits have changed drastically. Although I must admit I'm not the healthiest person in terms of my food. I used to be someone who didn’t really worry about food intake. Unless I was trying specifically to lose weight I normally would eat on the go and out a lot. I didn’t pay much mind to the health aspect of food but more so the taste. I love sweets and just good food. In the 6 months or so I've been through different stages. Although I must express I am not a freak about food but I mostly just try to eat within moderation. I’m slowly learning to change my old habits and the benefits of eating healthier. But if I feel like eating a cookie, I will. I have noticed improvements from this and so I will continue to follow that path as best I can. Many days I’m so weak and tired to even think, prep or cook a decent meal though. As a result my plan is still not 100%. Feeding the kids is a whole other story!

My kids…oh my beautiful kids. I have so many emotions with this as it takes a decent amount of energy and basically a full-time job when you have toddlers- especially two at 14 months apart! Not to mention I also work full-time and commute. My sleep is deprived and has been ever since I was pregnant with the first. I have permanent eye circles under my eyes. My daughter is now 3 and my son just turned 2! Both are still in diapers and starting to communicate their needs which helps. owever, mostly in the form of screaming, whines and crying! Such a fun age but very dependent on me still. They fight a lot as they are so young and cannot understand "sharing" yet. Both have a ton of energy and not a lot of fear, which in turn increases my fear, pushes my nerves to the max lowering the energy I have or lack of to begin with! I love them both so dearly but I desperately need help with the care for them. Luckily my illness is still manageable but some days I feel like it may not be. Especially when I get sick which is often. On those days, the only thing that keeps me going is the kids themselves. I live and breathe for them fighting myself to find the strength to just keep going. I won’t go into the details of my marriage that will be non-existent as of April 2010. But, needless to say I am a single mom and alone in my struggle. He never did understand what I was or am going through and refuses to believe it is affecting me as I say it is. I guess he figured if I’m not dead then it’s not that bad. He’s never really tried to understand the Lyme or me for that matter. Many may know that have gone through any Chronic disease, it is imparative that your significant others try to understand. And at the very least, support you even if they don't quite understand it allt he way. Anyway, that's life and in the end it's better this way than my children see us argue or fight.

My immediate family is helpful when they can but not as understanding or supportive as I'd like them to be. As most people they have their own issues to deal with. The same goes with my friends. Dear as they all may be, no one has really had taken the time to understand the depth of my situation. With that being said, I really can't expect anyone to understand or help. The only person I can 100% depend on is myself. Sometimes it is hurtful to me that I don't have anyone I can turn to other than someone paid to listen or help. In a sense this has helped me understand the strength, sacrifice and depth of being a mother. Strength is nothing more than how well you hide the pain (like when you are sick but have to keep going to take care of your kids that are sick too). The pain helps you push forward in order to see it all behind you and the rewards in front of you (like duing birth when you keep pushing to get that baby in your arms!). It's all part of the process and each of us sees the process in a different light. I am greatful for the light in my life to see it for what it is - A journey that has just begun. But I am most greatful for all I have been blessed with - especially my two beautiful children!