I'm not going to cry as I type this post. Okay, maybe just a little.
Because of my CIDP (chronic inflammatory demyelinating polyneuropathy), I have inflammation. Sometimes I have mucho inflammation. For the past two years, my wedding ring has been so tight I can't get it off. Can you see where this is going? I mean, can't get it off regardless of what I try. My husband has said for two years, "That ring will have to come off at some point. You can't live like that much longer."
Two years later and he came home from work yesterday to find my finger red, inflamed and just gross-looking. I pulled out all the stops..."It'll be better tomorrow", "You'll cut my finger if you try to cut it off", "Let's just wait a couple of hours". You name it, I said it.
It didn't work. He wasn't backing down. So he and DiMarco went out to the garage to hunt for wire cutters and I hid. Not very well because they found me. It took awhile, but Chris cut it off and I cried like a baby. Not because it hurt. It didn't hurt one bit. I cried because...well, I don't really know why. It's just a gold band. Just a "thing".
I cried because this "thing" represents the union between two best friends who love each other and have promised to do so forever. I cried because this was actually my second wedding ring. Early in our marriage, we were flat broke and had to sell our original rings to pay the rent. That's a whole other story! I cried because this "thing" was a symbol. A symbol of a beautiful marriage.
As the night went on, I cursed CIDP. It has changed my life and now it has taken my ring. I was just so stinkin' mad! Then as it got later, my finger started to look much better and I became much more rational. I realized I could be angry about this or I could choose to find hope it this situation.
My marriage is my marriage with or without a wedding ring. I have been blessed with an amazing man and an amazing marriage. I can't imagine life any other way. What a journey the two of us have been on! A ring is just a ring. I have the real thing, not just a symbol.
In time, we'll save up enough money for another simple band. Until then, I'm thinking about buying a ten dollar fake one. Whatcha think?
CIDP, you can take the ring, but you can't take the real thing!
With hope,
Kristen
Friday, September 26, 2008
How Many Of Me?
As if I have extra time on my hands, I came across this today. As dorky as it is, I'm passing it along. Kinda interesting! Let me know what you think. Oh yeah, if you're one of the other Kristen Reyna's in the USA, let me know!
Tuesday, September 23, 2008
FDA and Gamunex
For those of you with CIDP I'm sure you've heard the news!
It seems that the FDA has approved Gamunex for treatment of CIDP. This is the current IVIG I receive and have for some time now. From what I can figure out, Gamunex has been designated as an orphan drug to treat CIDP. Not sure what that means other than financial incentives for manufacturers.
This is obviously great news because I received the announcement from GBS-CIDP Foundation International as well as it being all over the internet for over a week now. Hopefully someone has the answers to my questions...
My questions are: What does this mean for those of us with CIDP? Does it mean the cost of Gamunex will likely go up or down?
Does it mean Gamunex will be harder or easier for me to get?
Does this mean Gamunex will be available to those without health insurance?
I'm thrilled because this is a step of progress and any step forward is a step in the right direction!
Exciting and hopeful days ahead!
With hope,
Kristen
It seems that the FDA has approved Gamunex for treatment of CIDP. This is the current IVIG I receive and have for some time now. From what I can figure out, Gamunex has been designated as an orphan drug to treat CIDP. Not sure what that means other than financial incentives for manufacturers.
This is obviously great news because I received the announcement from GBS-CIDP Foundation International as well as it being all over the internet for over a week now. Hopefully someone has the answers to my questions...
My questions are: What does this mean for those of us with CIDP? Does it mean the cost of Gamunex will likely go up or down?
Does it mean Gamunex will be harder or easier for me to get?
Does this mean Gamunex will be available to those without health insurance?
I'm thrilled because this is a step of progress and any step forward is a step in the right direction!
Exciting and hopeful days ahead!
With hope,
Kristen
Tuesday, September 16, 2008
It's Here! It's Here!
It's a glorious time of year, isn't it? After all, the Pumpkin Spice Latte is back! That's right! Head on down to Starbucks and check out my favorite "comfort" drink. It's just a beautiful thing. Makes me want to turn off the AC and open the windows. Oh wait...it's still South Texas and we can't quite do that yet. But I can still pretend it's fall.
Enough of my Fall-weather-people envy for now! I'm hosting a small group in my home each week which kicks off tomorrow. Twelve sweet ladies will join me in a Becky Tirabassi study called "Let Prayer Change Your Life". Can't wait! Becky will be the guest speaker at the Living the Life Conference and I'm thrilled to get to meet her in person. If you haven't already purchased your ticket, this is an event you won't want to miss. Check out www.livingthelifecc.com for more info or email me.
I hate to admit I'm a little nervous about having 12 women in my home every week. I have friends over for coffee all the time, but I'm not the best housekeeper. Let's face it...with chronic illness you have to pick your battles and keeping a clean house is low on my list. I have clean floors and clean bathrooms. Anything else I need to worry about? We'll be doing the study in my living room, but I'm curious...What's the number one thing you notice when you walk into someone's home? Is it the dust on the furniture, dirty dishes in the sink or do you notice the smell of a great candle or clean mirrors? Help me make my priority list to prepare for my sweet friends. Thanks!
With hope,
Kristen
Enough of my Fall-weather-people envy for now! I'm hosting a small group in my home each week which kicks off tomorrow. Twelve sweet ladies will join me in a Becky Tirabassi study called "Let Prayer Change Your Life". Can't wait! Becky will be the guest speaker at the Living the Life Conference and I'm thrilled to get to meet her in person. If you haven't already purchased your ticket, this is an event you won't want to miss. Check out www.livingthelifecc.com for more info or email me.
I hate to admit I'm a little nervous about having 12 women in my home every week. I have friends over for coffee all the time, but I'm not the best housekeeper. Let's face it...with chronic illness you have to pick your battles and keeping a clean house is low on my list. I have clean floors and clean bathrooms. Anything else I need to worry about? We'll be doing the study in my living room, but I'm curious...What's the number one thing you notice when you walk into someone's home? Is it the dust on the furniture, dirty dishes in the sink or do you notice the smell of a great candle or clean mirrors? Help me make my priority list to prepare for my sweet friends. Thanks!
With hope,
Kristen
Friday, September 5, 2008
Field Trip
In another attempt to organize my life *grin* I came across an old journal entry dated May 7, 2008. Sharing that with you probably tells you how unorganized I really am! Because this journal entry is a reflection of life with chronic illness, I'm posting it here.
May 7, 2008
Field trip today with DiMarco's class to Austin. We had a great time together. He's such a fun, sensitive, loving guy and I just love spending time with him. We started our day at 4 a.m. Makes me nauseous to get up this early. We chartered buses which was nice so we didn't have to drive. Needless to say the bus was filthy and disgusting, but all the parents rode on one bus making it much quieter than riding with noisy fourth graders!
Arrived in Austin. Went to Bob Bullock Museum for my first time. Great museum, but lots of stairs. I mean LOTS of stairs. I started out great, but cratered eventually. Sent DiMarco on with his group and just hung back...couldn't keep up. I was okay though because DiMarco wanted me just to "be" there.
Then off to the Cap. Building...beautiful detail and architecture. More stairs...no really, more stairs than you could possibly imagine. Lagging WAY behind now, getting a little teary-eyed and then DiMarco said, "Hey Mom...come over here and let's stop and take pictures." Did he read my mind? We stopped and took pictures and I don't remember what we started laughing about, but we laughed hysterically until tears were streaming down our cheeks! My exhaustion was a distant memory. Then more stairs, but I just kind of meandered around and went at my own (snail's) pace reminding myself this was all for my son.
We ate lunch on the beautifully manicured grounds outside State Cap. Bldg. Moms brought blankets and spread them on the grass, but I knew if I sat down I wouldn't be able to get back up. How embarrassing that would be. So I ate on a nearby park bench and watched DiMarco and his friends eat and play. All the other moms sat together and for a split second I wondered what they were thinking. Only for a split second. I knew they were probably thinking I was antisocial, but I realized I really didn't care what they thought. I was doing what I had to do to get through this trip and their opinion didn't matter one bit. Truth be told, they didn't have a clue what I was going through. Invisible illness is a blessing and a curse.
DiMarco had a wonderful trip and loved the fact that his Mom was there. I'm exhausted and this will take days to recover from, but I feel such a sense of accomplishment. I certainly don't enjoy this level of exhaustion, but I DO enjoy the fact that despite CIDP, I did it! I made it and was there for my son. As we loaded up for the long trip home, DiMarco went to his bus and I went to mine. Before he did, though he said, "Mom, this was a great day. I'm so glad you came with us." Ahh...music to a mom's ears! A beautiful melody to the ears of a mom with chronic illness.
May 7, 2008
Field trip today with DiMarco's class to Austin. We had a great time together. He's such a fun, sensitive, loving guy and I just love spending time with him. We started our day at 4 a.m. Makes me nauseous to get up this early. We chartered buses which was nice so we didn't have to drive. Needless to say the bus was filthy and disgusting, but all the parents rode on one bus making it much quieter than riding with noisy fourth graders!
Arrived in Austin. Went to Bob Bullock Museum for my first time. Great museum, but lots of stairs. I mean LOTS of stairs. I started out great, but cratered eventually. Sent DiMarco on with his group and just hung back...couldn't keep up. I was okay though because DiMarco wanted me just to "be" there.
Then off to the Cap. Building...beautiful detail and architecture. More stairs...no really, more stairs than you could possibly imagine. Lagging WAY behind now, getting a little teary-eyed and then DiMarco said, "Hey Mom...come over here and let's stop and take pictures." Did he read my mind? We stopped and took pictures and I don't remember what we started laughing about, but we laughed hysterically until tears were streaming down our cheeks! My exhaustion was a distant memory. Then more stairs, but I just kind of meandered around and went at my own (snail's) pace reminding myself this was all for my son.
We ate lunch on the beautifully manicured grounds outside State Cap. Bldg. Moms brought blankets and spread them on the grass, but I knew if I sat down I wouldn't be able to get back up. How embarrassing that would be. So I ate on a nearby park bench and watched DiMarco and his friends eat and play. All the other moms sat together and for a split second I wondered what they were thinking. Only for a split second. I knew they were probably thinking I was antisocial, but I realized I really didn't care what they thought. I was doing what I had to do to get through this trip and their opinion didn't matter one bit. Truth be told, they didn't have a clue what I was going through. Invisible illness is a blessing and a curse.
DiMarco had a wonderful trip and loved the fact that his Mom was there. I'm exhausted and this will take days to recover from, but I feel such a sense of accomplishment. I certainly don't enjoy this level of exhaustion, but I DO enjoy the fact that despite CIDP, I did it! I made it and was there for my son. As we loaded up for the long trip home, DiMarco went to his bus and I went to mine. Before he did, though he said, "Mom, this was a great day. I'm so glad you came with us." Ahh...music to a mom's ears! A beautiful melody to the ears of a mom with chronic illness.
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