Things I Miss

In being sick for such a long time there are some things I discovered. I miss things. Not physical things but life things. Here are the things I'm missing after 3 years of dealing with Lyme and co-infections.

1. Making my own decisions. Oh sure I make hundreds of small decisions a day but in reality I've had much taken away. I had no choice but to give up my nursing career of almost 20 years. I miss the adrenaline rush and I miss helping people. Decisions should be mine.
2. I've had no real choice in my treatment plan. Even now, my LLMD tells me what she thinks is best, I may get a choice on which path but reality is if I don't do this, this disease might kill me.
3. What I feel I can and can't do on any given day. Somedays I feel well enough to venture to a store. Other days, putting on socks exhausts me. I don't get to decide that. My body does. I'm merely there to cooperate with it or suffer the consequences of poor self care.
4. Keeping a facade. Lyme patients have to have a facade. In a sense it keeps me sane because for a few moments I get to be normal and like everyone else. People look at me and say, "You don't look sick." Sometimes I am grateful for that. If I sit and think about the magnitude of this disease and what it's done to my family, life and relationships I can get very depressed. But my kids and husband need me and if I spend every waking moment crying I'm not much use to them. They do see me cry and struggle and see me at my most raw moments. But there is still life to live. My facade is holding up just fine thank you.
5. I miss thinking. Lyme fog is awful. Cognition is non existent at times. I live my life by sticky notes and wonder some days if my thoughts will make it from my brain, down my arms and onto the keyboard or paper. If it does-will it make sense? What did I forget today? I'm still volunteering at church and in the homeschool community (by computer mostly) because it keeps my brain active and people still value my opinions (I hope). It makes me feel like I'm still contributing in some way and that my brain still has a few active cells left.
6. Playing. I miss playing ball and running (any physical activity really) with my kids and being able to go see their activities.
7. Traveling. Anywhere.
8. Being spontaneous. Not that I was every really spontaneous. Those that know me know I am the well planned out girl. But sometimes it would be nice to just get in the car and go without having to worry about when the next dose of medication is due or to take the kids out for icecream instead of knowing that the trip will be too much for me. With being spontaneous comes planning ahead. I can't do that either because I never know how I will feel.
9. I miss my hobbies. Gardening especially. Digging in the dirt is very cathartic and meditative for me. Growing the food is providing something for my family.
10. I miss being trusted. Trusted to know that I was/am ill, trusted by my doctors, trusted by family and friends to know that I am making the right decisions for me at this very moment.

At this moment, it's all I can do.
Bev

Lyme Update

I thought I would post this photo of my what my Friday morning routine looks like when the IV nurse comes to draw blood and change my PICC line dressing.

I'm holding my own for now. I saw the Lyme specialist on Friday. We (she) is doubling my dose of IV Doxycycline and adding in 2 more oral antibiotics. Since I had such a bad Herx reaction a year ago on IV Rocephin she is taking it slow. We did a few months of oral antibiotics, eased into the IV and now we pull out the big guns. I learned my brain lesions were in my frontal lobe. Well that explains a lot. She told me to prepare for some days of suckiness.

A few things have improved. My pain level is a bit better, I'm walking a bit better and I don't get chest pain and palpitations 24 hours a day now. I haven't had a Bartonella/Lyme rash in over 2 weeks. Small blessings but at least I know the meds are starting to work. And my kidneys and liver are so far holding their own and not protesting too much from all the meds so I guess that's good too. How frustrating though that it's been 5 months of various treatments and the meds are JUST starting to work.

Things that have worsened are my headaches and I'm having tremendous difficulty with processing, word finding difficulty and following conversation. I forget words and transpose letters in typing. Yesterday I could not make a coherent sentence. It was kind of frightening in a "I'm having a stroke" sort of way.  My typing skills have also deteriorated. Blog posting is painful and tiring. My vision has also significantly worsened, much worse after my IV dosing. My brain feels swollen.

 It perhaps is.

I'm tired.

 It's a tired I can't explain to people other than to say, "Run a marathon...then do it again as soon as you finish."

My family is feeling the stress of doing what I cannot. Laundry, chores, running errands, my crankiness and mood swings. It's a life change for all of us. I'm grateful for them.

2012 has arrived. I am fighting this. I have to. It's taken up too much of my time and my life. I will endure what ever suckiness it feeds to me. I am stronger than this. I will be stronger than this.

Bev

Lyme Lasagna

Lyme Lasagna. Sounds appetizing doesn't it? My Lyme story gets longer and longer with twists and turns and many layers...like a lasagna. One layer of the story doesn't work without the other.

I've finished week 2 of antibiotics and had my check up with the Specialist. I cannot convey the feeling of general crappiness that I feel. The Nurse Practitioner that I see was quite pleased with my Herx symptoms-herxing means the antibiotics are working. I'm glad someone is enjoying them because in all honesty this is a horrifying process and if I didn't have a really strong support system I don't know how I would get through it.

I'm back in my angry phase. I'm wondering how 9 doctors could have decided to NOT treat me. Nine doctors-not one or two but nine. I'm wondering how after 28 different medication trials for Fibromyalgia that they didn't stop to think that Lyme could still be the culprit. They made that decision to not treat despite what was in front of them. Does anyone else find that shameful? What ever happened to "first do no harm". Their medical training teaches them to worry about the implications of long term antibiotics as harmful and to only rely on medical science for diagnosis I guess.  What ever happened to listening to the patient? And in my case I had 3 positive co-infections documented and the Bartonella is pretty definitive based on symptoms and the classic rash I recently went through. I suppose I'm faking the brain lesions too.

I don't know what kind of function I'll get back after treatment.The NP already told me I was in a for a long haul. It's hard to be positive in the middle of treatment when you see little or no improvement. I know it's only week 2 so all the other lymies out there are telling me to be patient.

Treatment sucks. I'm tied to my house. You either spend your days hooking up your lines, infusing, playing with syringes, IV flushes, alcohol swabs, dragging an IV pole through  your house, figuring out how to shower, managing spells of rage and crying, waiting for medical equipment deliveries, managing the symptoms from the die off, unhooking, more line flushing, waiting for IV nurses and dressing changes, submitting forms to insurance companies, fighting payments (or lack there-of), getting blood drawn, sleeping (or trying to sleep), or just trying to breathe. Put that on top of taking care of kids, home, cooking, everyday life-yeah you get the picture. Treatment is a full time job.

This week I'm dealing with bad headaches and neck pain, and awful chest pain and air hunger. I can't really call it shortness of breath. It's more like when you were a kid and you swam all day and then at the end of the day you tried to take a deep breath but couldn't because your lungs had had enough. It's that feeling that you can't take a deep enough breath. It's Lamaze breathing 24 hours a day. Walking to the end of the hall exhausts me.

My vision is awful with floaters, black veils, photophobia and blurriness. So now I have to see an Ophthalmologist in Boston that specializes in Lyme vision. The NP isn't hopeful that I will get my full vision back considering how long this has been brewing in my central nervous system with no treatment. Thanks so much sucky non-believing doctors. Spend a day in my shoes and see how long you survive or if you think your decision and former beliefs about Lyme were right. Oh and when you change your mind about what Lyme really is, then we'll make you wait 3 years for treatment. How does that sound?

After my initial 30 days of treatment are done, my IV dose of medication will be increased. Double dosing. O' Joy. Yep-herxing through the holidays. The NP let me know that I have to stay on antibiotics until I no longer have active symptoms and then she does pulsed therapy for how ever longer that takes. In the midst of treatment we do some repeat MRI's to see where we are. A very long haul.

I am trying to focus on that fact that I now have a NP that listens to me, that is treating me aggressively with antibiotics and who is hopeful for my future instead of the lyme naysayers. What I say to my former doctors-I'm not really sure and haven't decided. I'm not sure saying anything would help change their mind. Probably not butat the very least-they will have heard me.