Two Steps Forward, One Step Back

...is still one step forward.

Since I last updated I have been doing mostly very well. Pain levels and symptoms over all have been way down in intensity. My ND asks me to chart pain levels on a daily basis (0 being nothing 10 being extreme and needing to go to the ER for pain meds) and overall the last few weeks I've been rating pain at 1-3's... for me, that is GOOD and so rare. I even had one day where I rated pain at a 0!! Through this good stretch I could feel more of myself coming back a bit and I started to just live again. And it was so good. It's been refreshing for all of us. During the good days it becomes more evident how poor my endurance is, I've lost a lot of strength and muscle so even without experiencing so many symptoms I am limited in what I can do. Because of this I went through days of doing great and doing too much and then needing to spend a couple days resting and so on. I apparently need to work on pacing myself...

This past weekend I took what I thought was a sudden downturn and spent a couple days hardly able to get out of bed. Saturday overnight my pain levels jumped from 1-3's up to an 8! Sunday I tried to get up here and there but the holiday Monday I didn't get out of bed until 5pm. I saw my ND on Tuesday and he said I got heat stroke on Saturday which flared up my symptoms because the weakest parts of your body will suffer first after a hit like that. One of my other medical doctors I saw this week agreed and said he believes that the stress of that on my body threw my pelvic muscles into spasms as it doesn't take much to set them off. He said my pelvic muscles felt terrible and prescribed some muscle relaxants to try and calm the spasms down. I don't always accept these easily but I did this week because my pain levels are just too high right now.

Looking back I did make some poor choices which lead up to that... it is well known by us that I have poor heat/sun tolerance that has gotten much worse since getting sick and I have to take precautions because of that. Saturday was a hot day and in the morning I went to Lucas' first soccer practice and sat in the sun for two hours without drinking water because I had to go to the washroom and there aren't any there. By the end I wasn't feeling well and mentioned that to Kyle but I knew it was just because I was in the sun too long and once we got home I'd start to feel better. Then later that afternoon I went and 'worked' outside in the heat again as we were wanting to clean a few things up and then I suddenly got terribly nauseous, dizzy and panicky because I felt like I was going to pass out. I went in to lay down and by the next day I was in such awful pain and the fatigue, head pressure and dizziness was overbearing. Not knowing it was heat stroke that caused this and thinking it was another unexplained downturn was hard to cope with as the brain fog made it impossible to think straight. After my IVs Tuesday I am up and moving around a bit now but have spent a lot of time laying down or sleeping this week, so thank you to those who've helped me out extra!! Saying thank you doesn't feel like enough. I realize I am very blessed to have both regular and extra help when I need it.

One thing I have noticed throughout the ups and downs in the last two years is that when things take a turn for the worse and I'm in so much pain I just focus on surviving it, and the same when things start to improve, I mostly just enjoy it. Then later, once the "excitement" eases, that's when it starts to get tough emotionally. It starts to sink in how much I've endured, how hard this all is and how long of a road there is ahead yet. I need to keep reminding myself of the assurance I have that God has a plan in all this, he's not just throwing things my way to see how much I can handle.

On another note I think I have finally finished most of my specialist appointments now. The rheumatologists I saw came to the conclusion they suspect I am developing an autoimmune condition; either Lupus or a Connective Tissue Disorder (both of which are common misdiagnosis of Lyme disease). They have not said either way what they think about my positive IGeneX Lyme test besides it being "an interesting document", but they said it is encouraging that I am seeing some improvements from my treatments for it and said they are comfortable leaving me in the hands of my other doctors.

My white blood cell count has gone up. This is good news! If you remember me talking about my WBC count in my blog post after seeing Dr. C in Richmond I explained that I always sat on the high end of normal and after I crashed two years ago my WBC count dropped to low end of normal. That was the only clue in my lab results that something wasn't right but because it was still in normal range all the doctors I saw dismissed my concern. During the last two years they have stayed low and they're finally going up now! Maybe all those vitamin C IV's are giving my immune system the help it needs?! They tested all the different white blood cells and some are indicating I'm fighting what's most likely a bacterial infection as some are too high and others too low. Those doctors did not comment on what they thought I was fighting but seeing as they encouraged me to continue what I'm doing under the care of my other doctors I wonder if they maybe have a hunch I have Lyme. Even though I seem to be having so many ups and downs it is encouraging that things are changing and that I am experiencing some better days.

I also recently saw a gastroenterologist who decided not to do any investigating for my GI issues and abdominal cramping. She didn't seem very concerned and diagnosed me with Irritable Bowel Syndrome. (Surprise. Another common misdiagnosis of Lyme). After I showed her my Lyme test from IGeneX and the negative Elisa one done in Canada she asked me which one I believed. I said the American one, she said "O.K.", and went on to say that sometimes relieving your body of chronic infections including ones like Lyme (she was careful with how she worded that...) then your body usually functions better and many symptoms like GI issues tend to improve or go away. I was a little shocked to hear how she somewhat encouraged me to keep treating it in a round-a-bout sort of way.

Then the following week I found out that I tested positive for another pathogenic bacteria in my gut that my ND sent in because he thought it was important to find out if I had anything secondary like that going on. I am asymptomatic for it other than the cramping and GI issues that most doctors disregard so it was missed. This will be treated now along with the Lyme and co infections by Dr. C. When you have Lyme disease your immune system is suppressed so you become more susceptible to infections, parasites, etc. as you don't fight them off as effectively.

I also had a lung function test done which I was gifted a three day headache afterwards from trying to perform. The results were 'relatively normal', indicating that the muscles around my lungs are weak which they say could be contributing to some of my fatigue as I'm not breathing efficiently. I have been having some lung related symptoms for some time now so this isn't a surprise. Hopefully in time I will be recovered enough to be able to do some exercises to improve that as well.

A dear friend (and a few others who filled in a couple times!) picked up Brandon on Wednesday mornings this past season for bible study because they hold story time for the preschool aged kids at the same time. I wasn't able to go this year so this was very thoughtful, Brandon LOVED it! The quiet mornings for me at home were also so appreciated. Here he is after his last day holding his picture and name tag. :)

  Lucas waiting for his ride to school... Brandon seeing him off. The help with driving him to and from school has been incredibly helpful for me! Thank you.

My family doing the Take a Bite out of Lyme Disease Challenge for Lyme awareness.

 A typical late afternoon/evening around here and what Kyle often comes home to... this time of day usually hits me the hardest.... (and Lucas loves to play the minion game on Dad's old phone!)

We've received more cards, letters, emails, texts, flowers and comments either here or on facebook... thank you to those who have taken the time to reach out and encourage. It brings tears to my eyes at the thought, I can't always reply but please know they are blessings to us and how much they mean! Some of you also remind us that you pray for us often and that you wish you could do more... your prayers are so important and they are heard.

Thank you.