2 weeks down. The easy part is over. Today my nurses drew blood for another Lyme Disease panel. I hope to get the results on Monday to see how everything is coming along. My test results from last week showed my C diff is normal and my electrolytes are good, but my white blood count keeps dropping. I just started another medicine that will help my intestines to hopefully digest better. I have been on it for a day and a half and hope it improves soon. I will find out Monday what direction my treatment will go.
As I am sitting here doing my infusion... I received the comment that I look like I am hiding from someone with my hat on. I responded with "From the world, I guess." I feel so run down and have little care about how I look right now. There are always other women in here with amazing hair, clothes, and lots of perky energy... I'm over here looking like death, (in my opinion!) This place treats a variety of infections so Lyme patients are less common. Which means a lot of people at 8am on their way to work afterwards.
The first week I felt the exhaustion from the meds, (mind you on top of all my Lyme symptoms,) and my intestines stopped digesting everything. I have had constant diarrhea since day 3. Some days I can't even leave my house because of it. Fun, huh?
The second week I felt even more exhaustion. It would start around 11am and my brain would just shut off. Every day there was a new excruciating pain somewhere in my body. The diarrhea was causing the nausea and my sense of taste is shot from the antibiotics, and still is.) I spent most of my afternoons asleep in bed, on the couch, or going to the bathroom. It would lessen around 4pm to 8pm at night. Later in the second week I gradually started feeling the effects by 10am and lasting just as long. ONE day was pain free and I was SO excited! I spent much needed time with my oldest and watched movies with the kids. It was a great day! I yawned a lot and kept the bathroom occupied but it was great!
Today is day two of my third week. Yesterday I came home and only made it to the couch. When I was in the middle of my IV drip with Rocephin I instantly felt the effects. I finished up, hogged the ladies room and made it home in time to crash on the couch. I stayed there... For a while, hat on, and everything.
Today is a little better as far as exhaustion but not for my poor bum! (Sorry! That's my life right now... My relationships consist of being friends with the couch, bed and toilet!)
I have been able to keep up with very little compared to what this busy body is used to. I have been very blessed to receive help from family and friends with meals, babysitting, and house cleaning. My husband has filled in where he can but our children come first. During the last year I have spent more time cuddling kids and talking to them then keeping them on task of chores, service and school work. Their eating habbits have worsened and whining has increased. I know they have gotten away with a lot this last year. I also know that I will get better and slowly get our family back on track as well.
When a family member is sick it weighs on the rest of the household, too. Especially when the sickness lasts for months. Spouses feel strained and exhausted taking on extra responsibilities. Watching their loved one go through the course of the illness is emotionally hard as well. The children are not able to fully understand why this is happening. For Lyme Disease patients you have to get worse before you get better... It makes it even harder for children to witness it. My kids now approach others with conversation starters like, "my mom is sick" or "my mommy is not here because she is sick." They are walking stress balls and we try to bring some laughter into it all with positive outlooks and attitude.
My kids keep me fighting this head on. I cannot let them think I am helpless or a victim... Mostly because I'm not. I'm a fighter, a warrior in their eyes and this too shall pass. We look ahead and in the now enjoy catching up on movies and TV series we have missed. I have had a lot of time to ponder... Spiritually it has been humbling for me. I have goals to redirect my life. Continuing to help others, teach my children the gospel and to serve as an instrument in the Lord's kingdom. I feel the HUGE need to purge my home and live with less. (This was my goal last year when school started and after getting sick since October it has stopped.) I want to be out doors every day... My backyard was my sanctuary and now it is trashed, unloved and dead. I will have a lot of work getting it up again but I can't wait to start. I am one for being outdoors so its ironic that I contracted Lyme! I plan to build a playset/ club house outside for my kids and I to "hangout" and to plant grass again. I wish I could make the WHOLE yard grass... We will see! I hope to paint walls to liven up the place and to establish our school corner again. I plan to help others as we have been helped... Before I did it out of love. Now I know I will serve with more empathy... More understanding. Accepting help is hard when you are so self-reliant and always serving others. Being in the accepting position is humbling. I have learned so much. (I am in tears now thinking of having my life back... Being functional again!) I am impatient but know that I will have to gradually work my way back. I miss Zumba and fun date nights... I miss playing with my kids and jumping for hours on the trampoline without being tired. I miss camping and road trips with family and friends. Most importantly I miss being able to remember what I read and to function mentally enough to take care of things. I'm the primary president in my ward and I am VERY excited to get back. We have amazing kids and they have such sweet spirits. My counselors, secretary, teachers, music leaders, scout and activity days leaders are awesome and I couldn't do this without them. I am surrounded by love and am truly am thankful.
My son is wanting to spend time with me and has been patiently waiting... Well, sort of. But he needs me, so I better stop now! Thanks for being patient with me! Love you all!
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