Wednesday, May 20, 2015

Escaping Reality....Reality

Most people who read this blog see it through Facebook, so you know that we just returned from 10 nights at Disney World ...5 days in parks, and 5 rest days between, though a couple of them weren't complete rest days. It was Marissa's 18th birthday/graduation trip. I had so much fun with the girls and laughed a lot. I also fought a huge physical battle.

I know the Lord helped me, because there is no other way I could have gotten through a trip like that, especially with the new treatment I started and how much sicker I have been since Dec. and more so since April.  I went to Disney just over 2 years ago, and He gave me such a miracle that trip. This one was a little lighter on the miracle, and heavier on the helping me through it even though it was tough. Still it was not without some huge things. Lyme has been making my back hurt for a couple of months. A LOT. Severe, gasping pain when I move. But, during the trip, it never hurt once. A huge blessing! (It greeted me again yesterday.) And, despite times of being very sick, there were many times, especially through the days at the park, that He sustained me and gave me strength I don't usually have and kept me going when I didn't feel like I could.

We purposefully checked out of the campground late the day we left (Okay. So we didn't plan to be quite THAT late!), and it was dark as we drove out. I looked out the window, watching small lakes and palm trees (have I mentioned how much I adore palm trees? and, Florida?) quickly go past, and silent tears began to slide down my cheeks. The escape from reality was over. See, even though I couldn't have put my body through another day in the park no matter what, and even though I was drinking a Lyme treatment 3 times a day and having to plan our park meals around them plus extra pills through the day to keep me functioing, and even though I was having to take every other day off to stay in bed, and even though by evening every day, I was so exhausted I could barely get out of the wheelchair....I could almost forget how sick I am.

Getting away from sitting in the house every day, day in and day out, mostly spending my time alone, seldom with any trips away from the house except for doctor appointments, and doing something that is actually fun, is unbelievably freeing. Even when my current definition of fun is not always what most people think of fun....though I had some of that this trip, too. To just be away from doctor appointments, to be out of the house, to do those fun things, to see my children laugh and make memories, to escape the everyday realities, makes it almost possible to just forget if even for a short time.

So, leaving was hard. Knowing what reality would be when I got back was hard. But, God is in the hard, and He continues to help me here, too, just as He always has. (That's not to say that I don't laugh, have fun with my family, and make memories here. It's just different to be away. Just like any vacation, but infinitely more.)

So, reality. Reality is that I was so exhausted and weak, James had to support me to get in the house when we got home. After a day of rest, Daniella had a dance recital, so I pulled out reserves I didn't really have, and God helped me be a dance mom that day. I got out the hot sets and a curling iron and spent over an hour giving ringlets to a sweetheart who has such a massive amount of hair you couldn't imagine. And, off we went. She did awesome, by the way!

I've been resting for 2 1/2 days since the recital, and it's the 5th day we've been home from the trip, and I am barely functioning a lot of the day. The rest of the day, it's still tougher than normal. I'm not recovering very well, and actually feel much worse. A number of struggles besides fatigue and weakness. I had hoped to be able to start increasing my dosage of treatments back by now, but my body is not strong enough to handle any more yet. It's hard not to be discouraged and lose hope. God and my husband keep pulling me back to hope, though. Hope that this is not forever. Hope to keep going and fighting and to keep drinking nasty tasting treatments.

We do know the treatments are making an impact on the Lyme. That's why I am sicker. The ones I have done since Oct. were making an impact, but the Lyme was reproducing faster than it was being killed. I'm not responding like all his other Lyme patients. (I've heard that one before from all 3 doctors!) So, we try this new one. It, too, is killing it. Killing Lyme means getting worse before you get better. And, worse I am. I can tell a difference with this new one; that it is doing more and killing more. The side effects of the die off (not the actual treatment) are much worse
as it fights to stay alive, moving to different areas,  and it releases and floods the body with toxins. Which may be part of what I am experiencing since being back. Some of this could actually be feeling horrible from that instead of not recovering, although I do feel worse now  at a lower dosage than I did at the higher dosage before we left. It could be a combination of treatment and trip. (I decreased it for the trip, so that I could make it through. I couldn't do anything the week before we left, so I went from 22 drops 3 times a day down to 9 drops 3 times a day.) If I am able to start increasing it again, I will probably get worse still. The goal is 25 drops 3 times a day, adding no more than one drop per day. It's scary, but not doing it is even scarier. Because not ever being out of this place of sickness is the scariest of all. So, as hard and terrifying as it can all be some days, we step out in faith when it's time, and pray that God uses it to glorify Him and bring healing to my body and for the sake of our family. He has continued to lead us every step, so even when the emotions are overwhelmed, the faith says that God is faithful and will do what He has promised.

Thank you to all who pray! 

                            Our first day in Magic Kingdom

                            Our graduate with Mickey!
                       Goofy coming over and kissing my hand :)

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