Update on Symptoms:
- Continued numbness on right side (and left arm)
- Body feeling constantly achy in the bones
- Weakness in my legs and especially arms & hands
- Right leg extremely sensitive to touch
- Bladder issues continuing
- Extreme fatigue
- Tingling throughout my body, much like I'm being poked with tiny needles
- I cannot bend my arms or legs for more than a few minutes without losing some circulation in them. ie. if I sleep with my arm bent at the elbow, my hand will become cold.
On the improvement side:
- Limp is still gone
- hands still fluctuate between cold and warm
Well, it's been a few weeks now of this fatigue and pain. I'm beginning to think this is my new "normal" -- where I long to just be in bed. Part of me wants to scream, part of me is complacent and defeated yet another part of me feels like I got ripped off. Let me explain.
I am hearing of so many people receiving treatment for CCSVI, and having their azygos vein checked and treated. I am not even sure that mine was looked at! I felt so great the first week post-treatment, where my left vein was ballooned. I felt like a gift was given to me, and then taken away. Is my physical decline just because I was "due" for another MS attack and I will get better down the road? This is all part of the waiting game. It is so difficult to just take this one day at a time .. waiting to see if I physically improve. I have had to stop reading people's stories of their Liberation .. it's just so hard to constantly see people have these miraculous recoveries, while mine seems to have stagnated. Does treatment of the azygos vein mean the difference between increased recovery and plateaus? Would I have had greater recovery if my azygos vein had been treated? I wish I had the answers.
My sister had angioplasty done for a heart issue, and she told me that post-procedure, her heart still had the same issues as prior to surgery. She thought that the procedure didn't work, but months later, she no longer struggles with the heart problem that she had before.. the procedure worked! It took time to heal. This is what I have to cling to -- that perhaps I need months to heal and that this is just a long recovery road for me.
I find this time of my life to be the most challenging so far emotionally. People keep telling me that I am such a strong person -- yet inside I feel like a broken person, each day striving for the strength to remain positive and upbeat for my children and others. (Even my hubby tells me he wishes I would be stronger). Maybe this is all part of God's plan to perfect my character. Have you ever prayed, "God, increase my faith, change my character to become more like yours"? Hmm.. I think I have. And (jokingly), I sometimes wish I could go back and retract that request! Seriously however, no one finds character-building easy. On hard days I wish I could go back to being 4 years old again, a time when things were simple and easy -- a time when mom would bake cookies and cuddle me after I woke up from naps. My reality, however, is that I have MS. Some days it feels like a nightmare -- an unbelievable turn of events which I wish I could wake up from. It is my constant struggle with becoming bitter about my life and the other option of embracing all that the Lord brings my way, with grace and thankfulness. I pray that I can be a positive witness to my kids to follow the Lord in whatever life brings their way.
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Dawna,
I have read your entire blog which is saying a lot! It's long, LOL! But captivating and beautiful, and keeps me hoping for more. I feel we have much in common. I realize you don't know me but I'd love to get in touch with you somehow. No weird stuff, just a Christian dx'd with MS and struggling, too. I think you need a long distance hug from a total stranger who honestly gets it. Anyway I'll understand if you say no but if you'd like to talk, I'm here. Just let me know the best way to connect.
Pam
PS - I love "Carry Me to the Table" -- makes me cry, too!
Thanks Pam for your encouragement. Yes, it is a LONG blog (for that I apologize!) Oh my gosh, I hope you at least had a strong coffee if you read it in one sitting!!!
I would be more than happy to get in contact with you .. just message me privately and we'll go from there :)
Dawna ... In strength there is weekness ... it is a strong person that still fights, is vulnerable and keeps it real! ... you are strong because you are still fighting ... you are seeing the weakness in yourself when others see your strength. You are still reaching out, fighting for more, trying to believe in the best. Many if given the same burden to carry would have never been able to bear the load. Keep on keeping on ... God WILL see you through. Remember he will not give us more then we can bear. Hold onto that promise ... as you know I relate on so many levels. I struggle with so much of the same things you do. If we hold eachother up in thought & prayer the journey will be a little easier. HUGS, HUGS, & MORE HUGS to you today. You are beautiful woman & I experience you as strong. You inspire me to keep fighting too ... my make me feel tankful for all that I still have ... my journey has been so much easier & yet I still complain. Don't ever doubt the strength you have ... just reading your section called "The Begining" ... who could deal with what you have ... only someone who is strong!
As tears run down my face, I thank you Gloria for your encouragement. I hit that "wall" again at 4pm today, and didn't know if I could even go downstairs to join our homegroup -- my energy was down to zero. I ended up joining in .. and was glad that I did. We watched a video on how we are to look at the cross when life gives us deep troubles. It asked all the same questions I asked.. it was almost as if it was written for me. In the end, instead of blaming God, or telling Him He doesn't love me, I need to look to the cross and know that He has gone through pain and suffering too .. and that He does love me - so much He died for me. Yet there is still that huge part of myself (the one that longs for comfort) that still says "yes, but if you loved me, you would heal me." I have so much learning to do .. learning to trust and accept is my biggest struggle. You say 'many if given the same burden to carry would haven't been able to bear it'. You know, there are so many moments throughout my days when I feel like I'm at that moment, and I cannot do it anymore. Tonight, I pray for a good sleep and that He will provide me with the strength I need for yet another day. Again, thank you for the blessing you provide to me through your encouragement... I cannot express how much it means to me -- how much it spurs me on to push through my weakness.
Just wanted to pop in and tell you I'm praying for you today. I know what it's like to have others think you are strong when inside you feel so broken, and also to have a hubby who wishes you had more strength. In fact, my hubby and I had a very similar discussion last night. The one thing I hold onto is that I am totally welcome and invited to crawl up on God's lap and just be broken. He doesn't ask me to be stronger, but keeps on walking with me and eventually I realize He's giving me His strength to get through and keep on pushing myself even when I'd rather crawl back in bed.
Yesterday while paying duty at the border after being honest (when I really didn't want to be), it dawned on me that I felt like God "owed" me for being honest. It seemed like God should have made that border guard say, "Oh thank you, Sara, so much for being honest. In fact, why don't you just go on home and have a good rest of the day. Don't worry about paying duty. You deserve a break after being so good." Inside my heart I was acting like a toddler reminding God of all the great things I've done and how much He owes me for it all. It was embarrassing to realize what I was doing, and then suddenly God let me know that He was listening and totally loving me through my brokenness. This may not be coming out right, but what I'm trying to say is how amazing it felt to feel God loving me even though I was clearly so broken. He let me know that He loves walking with me both in my physical journey of brokenness and hopeful healing as well as my broken attitudes.
I hope with all of my heart that He lets you feel His love in the midst of your heartache today and that He shows you what a delight it is for Him to have a chance to carry you.
Sara from the Bridge
you are beautiful!
Sara Sara .. thank you so much for writing what you did. I completely understand what you are saying (as I go across the border at least twice a week myself). One can easily draw a parallel to the physical realm .. feeling like as a Christian, we deserve healing from God. After all, we are His children and therefore He should desire to heal us, no? I certainly get caught up in that. How difficult it is for me to say "You are in charge, and I will follow". I'm a tough nut to crack! Thanks for the reminder, Sara (and by the way.. do you know how many Sara's there are at the Bridge? hehehe .. the mystery continues)
Gloria, thank you! Funny, how I found it difficult to let myself click "ACCEPT & POST COMMENT" on that one. (I'm not very good at receiving compliments. )
:)