Once more pain gets in my way

Once again pain gets in my way.  Some friends of ours invited us to the rodeo chili cookoff, and I want to go sooooo badly, but after talking to my husband, it's not going to happen.   Both of us agreed that there just isn't any way I can take that much walking.  It sucks so much.  I soooo badly want to lead a normal 30's kind of lifestyle, but my joint pain gets in way all the time.  Yesterday I decided to go get a few things from the grocery store, so I stopped after I picked up the kids from school.  You know how the produce section is the first thing you go through?  Well yeah, I was in so much pain just from walking through the parking lot to the store and then getting a few things from produce.   I wasn't sure how I was going to finish getting everything I needed.  In fact, I skipped a few things on my list simply because they were located across the store.  I just have to keep reminding myself that eventually there will be an end to all this pain.  My CD57 numbers came up!  My last blood test results said I was at 196!  Which is freakin awesome.  So for 30 days the Dr wants me to take no antibiotics and go through a detox.   I have to eat clean and do this detox program Unicity.  I am still left with all the crappy side effects from the Lyme, ie join pain, chronic fatigue, etc.   I will redo my bloodwork in 30 days and hopefully my numbers will remain good.  She doesn't want me to get my port out until we see if the Lyme stays gone.  Pray it stays away!   Now to just start living a normal life.   Sigh.....that may take a while.  

Do I feel good enough for that?

So we have some friends of ours that we haven't seen in a long while and they want to get together and see us this weekend.   Well, that's great, but since they haven't seen us in a while, they don't realize how sick I am.  Even though I've told them about my daily IV infusions, my stomach paralysis, my tiredness, my brain fog, and even my tremors.....I still don't think they get it.   Bless their hearts, I know they are just trying to be nice and invite us out, I'm afraid they think I'm being rude because I keep telling them sorry, I can't do that or this or whatever.   Like first they suggested the Humble Rodeo, and yeah that would be fun, if I could even walk it.  Then they suggested dancing, well that would be cool if I could even dance, let alone drink, I can't do either of those.   Then they suggested drinks at their house, then I said I still can't drink there either.  We finally just settled on meeting them for dinner.  I guess they will have to deal with the fact that I can't eat hardly anything either.  I'm telling you, Lyme disease puts a huge crink in social plans.  I had to sleep alot today just so that I can have enough energy to go to dinner tonight.  Ugh.  Just plain ugh.  Please God, let them understand that I'm not being rude, just overcome by a terrible disease.

First time hubby starts port

O.M.G. tonight was my husband, Craig's, first time to try and start my port.   Oh geesh!   He did get it on the first try, but I thought he was going to push it through my whole body.  He was pushing so hard......the nurse said, "ok, now try the saline flush and let us know if it burns."  I said my entire arms hurts right now, I can't tell if the saline burns or not.  The one blessing in this is that at least I have a husband that cares enough to do this for me right.   He cares enough to be my nurse every day.  That is a blessing.  So today was the start of his "Lymie" nursing career.  Thanks hun!

Fighting for my Life

Not many of my friends on facebook or instagram know what I go through on a daily basis, and many of them don't even know that I am fighting for my life everyday.  For the past twelve years I have been battling a devastating disease called Lyme Disease.   Recently it has moved into the Chronic Lyme stages and things have gotten drastically worse.  I have been in active treatment for the past 13 months and have suffered major set backs and am still no closer to a cure.  I just got word from my LLmD that my CD57 dropped to 37.  That was a big blow to my treatment.  I was up to 103 and then down to 73 and now 37.  Kinda hit a downhill spiral I guess you could say.   From now on I'm going to be vocal about this very lonely disease.  I will not hide it anymore.  I am out and I am fighting!   2014 will be the year I beat this awful bug!