Being a Lyme Mom

August 30, 2010 · Filed under Uncategorized · Tagged Lyme Lyme disease bartonella babesia ticks LLMD

Several people have encouraged me to write about what I’m personally going through as a Lyme Mom…that’s tough, because I think as a mom and wife you always put your kids and husband first.  I know that I could work up a really good whine and heaven knows I’ve cried more than my share of tears over the last year, but honestly, going there isn’t going to help anyone, including myself.  I’ve really pushed Jenna to be straightforward and upfront with people through this ordeal, so I guess it’s only fair that I try to do the same.  Here goes…

I’m angry at the so-called specialists who never took us seriously, delayed the diagnosis, and actually had the nerve to suggest that I was making up problems so I could put Jenna through testing.  Yeah, watching your child go through a spinal tap is a real trip.  I’m angry with the insurance companies who have put LLMD’s in a position that they can’t accept insurance and therefore patients have to come up with huge sums of money upfront.  I’m angry that these same insurance companies practice medicine without a license when they decide what’s appropriate treatment and what’s not without ever having met my daughter or reviewing her medical history. 

I feel guilty – a lot.  I should have pushed harder to get Jenna diagnosed sooner.  I should be able to do a better job of taking care of her and our family.  I should be able to keep ahead of the house and laundry and gardens. I should be working part-time to help with the financial situation.  I should be better at managing paperwork.  I should be more organized and put together.  I should be more dedicated about helping her go gluten-free.  I should be better at keeping her on schedule and pushing her to get her school work caught up.  I should, I should, I should…I could — go on for hours.

I’m scared.  I’m scared that we’ll run out of resources before Jenna is better.  I’m scared that she was diagnosed too late and will have permanent damage.  I’m scared that I won’t be able to help her when she needs it.  I’m scared that Chris and Joe feel abandoned since I spend so much of my time with Jenna.  I’m scared that Jenna will have to put her dreams on hold and then won’t be able to pick up where she left off.  I’m scared that I won’t be able to find work when I go back.  I’m scared because I don’t know what we’ll face every morning when we wake up.

I’m thankful.  Thankful that we were able to get Jenna set up with one of the best LLMD’s in the world.  Thankful for all of the support and prayers sent our way.  Thankful for a strong close-knit family that I can call for anything anytime.  Thankful that Jenna has a wonderful young man in her life who can make her laugh and smile on even the darkest days.  Thankful to the people at BSHS who are helping Jenna make the best of her senior year.   I am thankful for my faith and to Jenna for helping me to strenghthen it. I’m thankful that I’ve gotten to spend so much time with Jenna and that we’re closer than ever – even if the circumstances that made it happen are really crappy and it means I have to learn high school chemistry and algebra all over again.

I’m frustrated.  I’m frustrated that even though I’ve spent hundreds of hours researching this disease I’m still a long way from knowing what I need to know.  I’m frustrated that people who haven’t spent any time learning about Lyme still question what we’re doing and the treatment path we’re following.  I’m frustrated that Jenna feels that she has to “act” or “look” sick any time I’m able to take her out of the house because others have publicly questioned whether or not she’s faking it to stay home.  I’m frustrated that Jenna can’t qualify for SSI or that I can’t even apply for unemployment because I quit my job to take care of my sick child.  I’m frustrated that I haven’t been able to get my VA business to generate money.

I’m amazed.  Amazed at how much there is to know, not just about the disease, but how to handle treatment.  I am giving my child   chemotherapy at home with no formal medical training (American Heritage Dictionary:  The treatment of disease using chemical agents or drugs that are selectively toxic to the causative agent of the disease, such as a virus, bacterium, or other microorganism.)  I’ve had to learn how to change picc line dressings and flush her tubing, mix medicines, load IV’s, treat herxheimer reactions, how to maneuver a person who is unconscious or working through a seizure, plan out medicine schedules, and be attentive to any possible reactions.  I pray every day I give her treatment that I don’t make a mistake that will hurt or kill her.  If this were any other disease, Jenna would be in a hospital or treatment center at least once a week. 

I’m hopeful, but afraid to hope.  I am cautiously optimistic.  I am envious of people who don’t know what it’s like to have their child tell them that they know they’re dying and make them promise to follow their wishes for their funeral.  I am saddened that Jenna has had to grow up way too quickly and has missed so much along the way.   I am disheartened that Jenna has to learn so much about life the hard way and that I can’t do anything to cushion the hurts along the way.  I am thrilled that she still finds joy in so many ways every day. 

I’m…done.  I could go on and on, but the point is that being a Lyme Mom is kind of like living in a tornado.  Sometimes you stay in the center of the vortex and watch helplessly as your world spins out of control around you.  Sometimes you’re in the swirling winds, getting dizzy and tired, and beaten up by the flying debris that you never see coming.  Sometimes you feel powerful and unstoppable and sometimes you feel deflated.  Most days, you just do what you gotta do to get everyone through and hope that you didn’t screw up too badly along the way.