Friday, December 31, 2010

Ringing in the New Year quietly, but with GREAT cheer :)

In my last entry I wrote about all of the things I’d been accomplishing lately – working on Christmas cards, cooking, cleaning the kitchen some, driving to the grocery store with mom. God’s been doing great things for me. I re-read that entry and it helped me deal with where I am today. Today I’m on day 3 of no energy and feeling stuck in bed again. I’d been feeling very down about it. God got me to read that last entry and I realize the things I’ve been doing that are causing me to feel so tired. A big one is that I want to jump out of this bed and just start back to living full force, but I can’t. Being sick, weak, and living in bed for over 2 years means I need true physical rehabilitation to get back to living. My muscles need conditioning – just basic walking and stretching exercises. I need to be patient with my body and with my brain. On Wednesday I had what I term a “mini episode” type of seizure. No grand mal seizure activity but started out crying for no reason – which often happens right before a seizure – and then it was like I was crying so hard – not sobbing – but crying from the depths of my soul. It was one of the few times in my life where the crying was so intense it was as if I were listening to someone else cry – like it couldn’t be me making that noise. In a way I think I was crying out to God. I had to put an Ativan in my mouth and M put my oxygen on me just in case. It went away within 15 minutes, but afterwards I was exhausted and slept for 2 hours, ate dinner, and then slept some more. My cries to God may be as simple as a three year old who needs a nap but hasn’t taken one. It was also God’s way of showing me that I must slow things down, as much as I hate to do that. I’ve simply been so excited about all of my improvements that I have been pushing myself to get up and do even when I feel so tired and cranky. I keep thinking, “Just get up and do a few things and you’ll be in a better mood because you’ll feel good about accomplishing something.” That’s not true all the time – in my case, well, it just was too much pushing and not enough resting.

We’re also going to run tests to check my hormone levels. Two years before I was diagnosed with Lyme, my estrogen level was almost non-existent, as were my progesterone and testosterone. The doctors had even put me on synthetic hormones to get me on track with my cycle. They never worked. Now it’s like I’m a teenager going through puberty almost – my oil glands are more active, I’ve had this craving for anything with vinegar on it (from salad to pickles), my mood swings aren’t as “violent” but they cycle much more rapidly, and I will cry for no reason. I think all of these things indicate a possible hormone imbalance. I think as I start to get well my hormones are finally trying to work and they may be overcompensating after all this time. Women who suffer from seizures are close to 3 times as likely to have a seizure during their monthly cycle (best way I could say that where men wouldn’t go – “ewww” – hahaha). BUT, I so many of those symptoms and feelings also happen when my Babesia flares. I’m supposed to take my anti-parasitic drugs 6 days a week for 3 weeks and then go off for a week. This happens to be my week off and I have gone downhill more as each day passes without taking them.

All of this points us in the direction we feel God has been leading us – to start treatment on the Babesia again. Not just the anti-parasitic meds, but the Mepron (a prescription drug normally used to treat malaria) and start Azithromycin – both standard forms of treatment for Babesia. I had been on both while in K.C. but I was on so many other drugs that my body was too overwhelmed to handle those as well. And as much as I’ve been hoping to have my PICC line pulled in January, we’re going to talk to the doctor about oral Azithromycin versus the I.V. form because there’s some data showing the I.V. form to be much more effective. However, I am SOOO READY to get my PICC line out of my arm. The thought of taking a normal shower without having to wrap my arm and worry about it getting wet – well, that seems like a dream come true!

And, although I was back at home this Christmas instead of being in Kansas City at the IV clinic last Christmas, I still didn’t get to spend it with my family. If you live in Birmingham, Alabama then you probably feel like I do – everyone in this town is sick with something! The flu, strep throat, bronchitis, and other bacterial and viral infections have been making the rounds. One of my nieces had strep throat one week and then the next week was down with the flu. The week after that, my mom had a viral infection and the doctor put her on Tamiflu even though her Influenza blood test was negative. I say all of this to explain that as much as I wanted to go to my sister’s house Christmas morning and visit with mom, dad, my sister & brother-in-law, and my nieces and nephews – well, my immune system couldn’t chance it.

And here at my house it didn’t feel very “Christmasy” either. Neither M, recovering well from his shoulder surgery, nor I were up to the task of decorating the house and I knew I wouldn’t be up to cleaning up the decorations after the holidays were over. With the great expense of my medical treatment, M and I were once again not exchanging gifts with each other, or with any other family members, so I wasn’t even online shopping, much less going out to shop. The only thing I did that differentiated this time as the Christmas season was sending out Christmas cards. It’s a big task because I like to write inside each card and I hand address every envelope. I was proud that I got them done and that my shaky hands were able to complete the task! However, when Christmas morning arrived, I felt depressed. No tree, no presents, no family visits…nothing. I wondered why I felt more depressed this year here at home than I had last year while in K.C. and I realized it was because last year I did celebrate Christmas, at least a little, with my treatment friends. Here it was just me, M, and our furry, 4 legged baby, little m. I was disappointed. I was pouty. I was feeling sorry for myself – note to self, this could have been the hormone issue or Babesia talking, haha. Then I went to the kitchen and saw it was snowing. We haven’t had a white Christmas in Birmingham in, well, in the last 35 years that I’ve been alive. The snow was nice but I almost overlooked it because there was no traditional Christmas breakfast, so I was still pouty in the kitchen. It took me until that afternoon to realize that God had “stripped down” my Christmas to show me some very important things. First, and most importantly, was to realize how much the commercialism of Christmas has become what I equate the holiday with. We may use the saying, “Jesus is the reason for the season”, but honestly, without decorations, gifts, traveling to be with family, and the other rituals, you may have felt just like me, disappointed. So, I had to focus more on the true GIFT of Christmas – God’s gift to the world – JESUS. God’s son sent to earth to pay the ultimate price for our sins. I thought about just how BIG that gift is. It’s not just a gift at Christmas – it’s a gift we benefit from every day on this earth. And I felt ashamed that I hadn’t seen that sooner. Then I realized all the wonderful gifts God has given me, especially lately, as I am beginning to see the possibility of a much more normal life for myself. I re-read my last entry and thought, “K, how in the world could you think you hadn’t received gifts this Christmas? God’s been giving you gifts every day of the month!” So, I needed to be reminded and halfway through Christmas Day I realized how blessed I was to have my sweet husband, my baby dog, my loving family (even if they weren’t with me), and getting to see snow falling was my Christmas present. Weeks ago I had told M that the only thing I would miss about being in K.C. for Christmas was the snow. Last year was the first white Christmas I had ever experienced. Then here I was at home and God was covering the ground with a fine white mist of snow. It made me realize how stupid I had been. Maybe I needed this “stripped down” version of Christmas to really change my perspective on Christmas as a whole. I wouldn’t have realized just how many other things I think of, Christmas trees, Christmas music, decorations, parties with friends and family, when I should put more focus on what Christmas is really about. It’s Jesus’ birthday party! That’s what we should be celebrating! Thank you God for reminding me what Christmas is truly about – which is celebrating Jesus and thanking you for the most amazing gift the world will ever know – a Savior who would die for all of mankind’s sins. I’m not saying that I won’t buy Christmas gifts next year or that I won’t think being with family is important. I would like to think that God likes the so-called “Christmas spirit” of being kinder to one another, thinking of what others would like to receive, having family and friends close to you. It’s just that this year, well, I got to see what it would be like without all the muss and fuss!

Now I’m going to spend the last day of 2010 in the bed with great hopes that 2011 finds me out of this bed much more often! I feel that God is leading me out of this tunnel and I just have to keep my focus on Him to find my way out of here. The light at the end of the tunnel IS God and His plans for my future. I can’t wait to see what happens next!

As I lay in bed, wanting so badly to get up and out of here, well, that “mini episode” reminded me of something. Only GOD knows when it’s time for me to be up and out of here. So, after thinking on that this verse seemed very fitting:

“Be still, and know that I am God!” Psalm 46:10

I wish you all a wonderfully happy and healthy New Year!!!
Much love to you all!
K

1 comment:

Paul D- said...

K
Bless you - your insight is remarkable - You have come a long way - the road will be long and sometimes rocky - but you have the will power to over come and succeed - I am one of many praying for you, AND continuing to pray for you.
Be truly glad. There is wonderful joy ahead !- I Peter 1:6