Saturday, July 24, 2010

When Everyday Becomes a Chore

It's interesting how quickly this disease, or I guess any long term illness, can take a toll on you. Everyday life is quickly becoming a chore. I'm not saying it's a chore I won't "do" but it has become a lot of work just to be alive right now. My whole day sees to be centered around my medication schedule. I take medication all day long except when I'm sleeping and trying to coordinate what I eat and do around taking pills and naps is exhausting. I really have to try and focus on getting a good routine down for my treatment. My life has always seemed a little hectic and crazy and certainly unorganized. Now, however, not getting breakfast and grabbing a coffee and muffin a few times a week means much more than some extra calories and fat I packed on. All of my food choices have taken on a new meaning. They can seriously impact how my fight on lyme goes. Just one of those things in life that is easier said than done. It's not telling a junk food junkie to cut back, it is telling a junk food junkie to stop all of the good stuff. No sugar, no alcohol, no gluten, limited dairy, lots of green leafy things...Certainly not what I am used to. I have been and continue to try to eat better but I realized recently I have got to try harder.
With the way things are going I am now going out on disability from work. I know it's the best decision but it doesn't make it an easy one. I won't ever feel like I've tied up all of the loose ends at work. I also know that I can't give my best when I don't feel good. I can't feel safe doing my job if I am not at the top of my game. It is true my day to day tasks at work are not anything big to worry about. It's the emergency part that becomes a problem. If I have to work in the Emergency Operations Center during a big wildfire this summer or respond to a large structure for an investigation I have to feel good not just physically but especially mentally. I won't put other people at risk. I value my guys and the public to much to screw up. With that said, Lord knows how I've wanted to be a stay-at-home mom but this isn't what I meant. My time away from work is going to be so focused on getting better, not on just being free to do what I want. With this disease it means getting worse before it gets better. More pain, more fatigue, more exhaustion, more mood swings. I want to feel like I can participate in my familys life and not just be a by stander or more so a burden on them. Helping your children understand something like this is a tough one. I would like to never give the excuse again that mommy is sick and can't do something. As a lot of people with the disease have to deal with, on the outside we may look totally noraml, especially on a good day. But good days can still be bad and symptoms can come and go in the blink of an eye. Like on of my lyme friends said, we still make an effort to get up, get dressed, put on some make-up and a smile but that doesn't mean we are not in intense pain or still sick. You can't see the bacteria turning my insides to swiss cheese, but I can feel it. If I didn't get up and try it would be way to easy to give up. I can see how this disease could take over and I could become just a depressed heap of a person. I don't want that to happen. I know how much I want to snap my fingers and have everything be better but there are going to be some great memories during this time and I don't want to miss them just to avoid the pain and suffering. Just because I feel like everyday life is becoming a major chore, it's a chore I'll accept and do my best at!

Friday, July 2, 2010

Still Angry

I've realized over the past week or so that I am still angry over the fact that I have this stupid disease. I don't know how quickly someone goes through the different stages of emotions when diagnosed with a chronic disease. I guess everyone is different. I don't know why I expected to not really have much of an angry stage. Maybe because I was so fed up with not having an answer about what was wrong with me, I assumed when I got an answer I would just be grateful. Believe me, I am grateful. I am so thankful God has blessed me not only with an answer but wonderful doctors as well. That however does not take away from the fact that I am still angry. Angry when I am counting out my weeks' worth of pills. (I think I have finally reached close to 35 a day) Angry that my whole day revolves around taking meds and supplements. That schedule runs your life for a while. Thryoid pills can't be taken with food. Antibiotics have to be taken with food so you don't throw up. One of the antibiotics can't be taken within 2 hours of dairy or minerals with calcium. Probiotics should be taken in between meals and 2 hours away from some meds. Angry that when my medicine is working and the bugs are dying I feel like crap. Angry that I may have given this disease to my girls. Angry that my 7 yr old feels the need to run over and try to hold my arms down when I'm twitching. Angry that I have to reduce my work schedule right at the begining of fire season. Angry that everyday I am to tired or in to much pain to just live a normal life. So right now...I am just angry! I know it will pass. I have my good moments and my bad moments. Sometimes my anger makes me want to fight back hard and other times it makes me cry. I know deep down God has some crazy awesome things that are going to come out of this but sometimes it is hard to remember that.
So I went to my doc last week and got some updated blood work. One test I was excited to have (if that makes sense) is called the CD 57. In simple terms it is a way of measuring how well your immune system is working. Lyme docs want you number to be over 60. Mine was 66 so the doctor was happy. However, normal ranges are much closer to 200. My immune system has a lot of room for improvement. It is much better though than a fellow lymie I've met who actually has the same doctor as I do and whose lowest number I think was 8. I think she is at an 11 now. She has basically been told she will never get better. My doc thinks I will. My vitamin D level was really low. Crazy because I love dairy and drink milk. The low end of normal is 32 and I was 23. So another pill for that.
It was really interesting though that when he had to fill out papers for my leave he put down my three things under my diagnosis- Lyme Disease, Fibromyalgia, and Peripheal Nueropathy. The fibro is because of all of the wideapread pain, and the nueropathy is for how the lyme has messed up my brain. Still it was a little hard to swallow. Then when he had to put a time frame on how long I would be dealing with this he put 3 years. That certainly makes me look differently at if we will ever have any other babies. I wanted another one. I wanted to try for a boy. I know God is in charge and miracles do happen but until I know it's gone, I couldn't take the chance of passing it on. I may have already have given this horrible disease to my two precious angels. How do you explain to them that mommy made them sick? How do you tell your children that they may go through some of the same pain and torment that they have witnessed mommy go through. I don't even know how to tell them they have to get tested.
I'm guessing it's time for me to go to bed. I have a busy weekend ahead, including work, and although I've gotten some things off my mind, I'm starting to cry. So goodnight for now.