Feet

Feet...

God must have a sense of humor. Why else would He have made such strange things on the end of our legs?

I'm not fond of feet. In fact, they kind of gross me out. My husband refers to my toes as "sausages". I admit, he's right. I have incredibly chubby feet...Incredibly chubby. As a woman, my feet are probably the only body part I don't really mind being chubby. My toes also go in order from tallest to shortest and this is one thing I actually like about my body. Hee hee...

Today, my feet are aching so bad I could just scream! They're throbbing just under the balls of my feet through the top just below my big toes. One of the perks of CIDP, I guess.

I had a pedicure just last week and it felt wonderful. If you have CIDP or any type of neuropathy, please consider indulging yourself a little and having regular pedicures. I resisted doing this until a few months ago because I hated the idea of spending the money and of someone else touching my feet! My feet are much healthier now and it's amazing how good a pedicure makes me feel. Finding someone who can do a pedicure the right way is the hard part.

Aching feet somehow keeps me grounded. The pain makes me stop and realize the strength I have isn't my own. "Be still and know that I am God." (Psalm 46:10) Maybe I wouldn't "be still" if I didn't live with pain. I can't live with CIDP on my own. I can't even get through one day on my own. My strength comes from you, God. I am nothing on my own...just a woman with chubby feet!

CIDP and the heat

Yesterday was such a beautiful day! The sun was shining and not a cloud in the sky. To be honest with you though, I didn't enjoy one bit of it yesterday. Sunday, I enjoyed the sunshine and spent the afternoon at the beach. It was beautiful, cool, and clear. Yesterday, the sunshine was a reminder of just how difficult summer can be for those of us with CIDP. Any excessive heat and my hands and feet go numb. I mean, completely numb and it feels horrible. I just don't deal with this very well at all. For some strange reason, it makes me mad. No, it makes me furious! I don't want to waste even one minute of my life being mad, so I'm open to any suggestions as to how to make the summer heat more bearable this year. Have any?

I think I could handle it better if I gradually went numb and not instantly. If I'm in the car and get hot, it's miserable. If I'm walking from the car to a store and get hot, I'm miserable. Even yesterday, just going from the car (in the garage) to the back door of the house in the heat...I was miserable. I will NOT be miserable because of the weather this year! Please send me your suggestions for staying cool. I'm sure things are the same for CIDP patients in extreme cold, right? I'm looking for suggestions I can use in the car, running errands, going to and from work, etc. I usually stay plenty cool when I'm home because we keep the air turned down so I stay comfortable. There's a ceiling fan in every room of my house and a fan that I point on myself while doing my hair and makeup in the bathroom. I'd love to hear your thoughts. Sorry if I sound like a whiner, but this is real life with CIDP. It can be so frustrating!

I'm very thankful for a cold front that came in this morning. At least I'll stay cool this week! Thank you, God for the crisp, cool air even if only for today.

Great News

I received great news yesterday!

First of all, when I arrived at Dr. B's, the office told me Dr. B was no longer in network, which means the coverage isn't as high. Not a huge deal, but testing like the Nerve Conduction Study can be expensive out of network. By this point, there were was no way I was leaving. So, I just told her that I was prepared to pay 100.00 and I asked her to go ask the doctor what exactly I should do now. As I thought he might, he said "Take the 100.00 and get her back here! She'll never come back if you don't!" Maybe he knows me pretty well, huh?

Now for my news...The Nerve Conduction Study showed no dramatic worsening since my testing over a year ago! Thank you, God! The changes weren't enough for concern and we agreed to continue my treatment as we are now. As for the swelling...not sure yet. My cholesterol was 219 which should be below 200. That was frustrating, but not devastating. My dad had high cholesterol and my lifestyle hasn't been the healthiest. So, not much of a surprise here. Dr. B was quick to say, "The medicine I think you should try is...", which was quickly followed by me saying "No way!" I absolutely will NOT take medicine until attempting to get this under control with diet and exercise. I'm not a fan of any type of prescription medication unless I HAVE to. Have you guys struggled with this or do you have any suggestions for me? (I'm sure all the eggs I ate for breakfast didn't help any...ha!)

Nerve Conduction Study

Unfortunately I'm having a Nerve Conduction Study in the morning and I'm not looking forward to it. I guess you could say me and electric shock just don't mix. (Google "nerve conduction study" for explanation) Thanks to "Anonymous" for the accountability! Hopefully Dr. B won't decide to do an EMG this time because it's even more painful. I plan to go back to work after I'm done. Let's hope I don't get put in a room and forgotten about this time! I'll post my results tomorrow.

I sure hope the new socks I ordered arrive soon. I'm anxious to find something comfortable before it starts getting so hot here. Uncomfortable socks in the summertime heat is more than I can bear.

I haven't been successful with making breakfast the last few days. Just don't seem to make the time for it. To be honest, I haven't noticed a drop in my energy level either. I guess the eggs weren't doing much for me. What to try next?

Today was the day

Even though I didn't want to, I HAD to have a treatment today. Once every thirty days, I receive IVIG for about 4-6 hours. I put it off long enough and for what reason, I'm not sure. Anyway, my day started with taking the two younger kids to school, dropping off a cd for our upcoming Women's Conference, and then back home. I threw in a load of laundry, tidied up the kitchen and the nurse arrived...my sweet Randi!

I followed protocol (surprise!) and drank plenty of water beforehand to help with side effects. Poor Randi couldn't get the needle in! Bless her heart, she tried twice before her supervisor took over and got it on the first try. Her supervisor was there to do my yearly paperwork and made her nervous, I think. It only hurt for a second, but my arms look like I've been in a whale of a fight! Randi felt just awful about it because she usually gets a vein on the first stick. She's great.

The rest of the treatment went without a hitch...other than having to drag the stupid pole with me every ten minutes to the bathroom! Supposedly, if I don't drink lots of water prior to the infusion, the side effects are worse. I'm not sure which is worse, the side effects or the constant trips to the bathroom!

I was done in plenty of time to relax for a little while before going to pick up the kids. I have to admit, I drove to Starbucks in my pajamas and barefooted for a frappucino. Such a dork!

BTW, Randi and her supervisor both noticed the swelling in my hands this time and wrote it in their chart. Yikes! I have a follow up appointment with Dr. B on Tuesday, so maybe they'll be a simple explanation for this. I also have to have a nerve conduction study on Tuesday. Hate those! It's nice to be able to chart the NCS results from my initial diagnosis to the present, though. It wouldn't take much for me not to show up, so if you wouldn't mind holding me accountable...that'd be great.

Hopefully, the side effects will be minimal this month. At times I've had migraines, vomiting, hair loss, joint pain, and felt like I was hit by a truck. So far, no headache today...just nausea and dizziness. I can deal with that. I have a conference meeting tonight that I've really been looking forward to and I refuse to miss it. These meetings aren't "work" to me, they're a blast! Hopefully, I'll at least feel like putting on a little makeup before then!

Cream of the Crop

I'm so thankful for my nurse, Randi. She reminds me when I'm overdue for a treatment and does it with such kindness. She called me today to give me a gentle nudge, reminding me to call and schedule my next treatment. Thanks Randi, for being so genuine in your concern for my well being. I appreciate your kindness.

I went through many, many nurses to find Randi. The home health agency I'm with is fantastic, but sometimes it just boils down to personality and style. I had one nurse who refused to wear gloves, one who left his trash in my living room, one who was too overweight for my furniture, one who slept through my treatment, and others who were just plain rude. Randi is the cream of the crop. Love you girl!

Just to Clarify

I received an email today asking me if I was okay and if I thought I was getting worse. I soooooo appreciate the concern, but I am NOT doing any worse than I have in the past. This is certainly an up and down disease. I'm just being honest with all of you and with myself. Denial is not healthy. I'm unable to help others until I've helped myself. I NEED to be able to write down the truth about CIDP and then let it go...the same way I always have. The only difference now is that I have the desire to share my life with this disease in order to help someone else. Who knows if there's someone out there reading this suffering silently? You just never know and I don't want anyone to feel alone in their suffering.

I don't want to worry anyone or cause any undue alarm by the things I write here. If things are worse than they've ever been, I'll share that with you. Trust me, I NEED you guys. I'm just trying to be honest. Again, I can't tell you how much your love and concern means to me. Have a good night!

Britney Spears

I've been incredibly saddened by the life of Britney Spears lately. (Crazy thing to post about, I know.) I just feel so sorry for her. Her life seems so out of control and she seems so helpless. I guess no matter how much money we have or don't have, no matter how successful or unsuccessful we are in life, deep down we're all alike. We all have our own secrets and our own struggles. Britney's struggles look different than mine, but we both have them. You have your own secrets and your own struggles. My life with CIDP is no more challenging than the secrets and struggles you battle with or the struggles Britney battles with. They just look different. I'm reminded that God knows every single hair on my head (Matthew 10:30). If He knows the number of hairs on my head, surely He knows how my joints ache and I that can't feel my feet today. Surely He knows the torment in Britney's confused mind. Surely he knows the secrets and the struggles in your life. I'm comforted by His knowledge of every aspect of my life. If He cares about the number of hairs on my head, surely He cares about the rest of me! I pray you're experiencing the same comfort I feel tonight.

I Did It

Thanks to a couple of great friends, I did it! I fasted last night and had my blood work done this morning. Thanks to Alene and Araceli for holding me to this. I got the kids squared away this morning, got ready for work, and headed straight to the lab. There wasn't another soul in the waiting room, so I signed in and they called me back immediately. It was absolutely seamless. It couldn't possibly have gone any smoother. Yeah Quest Labs! I'm calling Dr. B in the morning to make an appointment next week for follow up for my labs and to schedule my Nerve Conduction Study. Waah!

As I walked back to my car from the lab, a lady using a cane was walking slowly across the parking lot. She was maybe ten years older than me, wrapped in a shawl and was obviously struggling with the strong wind. She was carrying a book and her purse and she dropped her pen when I was about 6 or 8 steps away from her. I told her to hang on and I'd get it for her, which was funny to me in a strange sort of way. As I picked up her pen and handed it to her, she looked at me with great big tears in her eyes and said, "Thank you so much." I told her it was not a problem at all and continued on my way. I smiled to myself thinking that to anyone else, I would've been moving much too slowly and they would've picked up their own pen. To this lady, though, I was more than capable. I was sad for her because she looked so distraught and it occurred to me that my life is so blessed. I can walk to my car, pick up a pen for a stranger in the parking lot, go to work, and do so much more than the sweet lady I met today.

Are you able to walk? Then get out and WALK in the beauty that surrounds you! Can you lift weights? Then go to the gym and LIFT until you're a sweaty mess! Can you stretch? Then STRETCH and feel the burn! We're all at different levels of physical health. Make the best of the level you're at and challenge yourself to rise to the next level.

Want What We Can't Have?

Ever find yourself wanting what you can't have? I admit I'm a late night snacker. I love a good snack after the kids have gone to bed. Because I'm having blood work at the lab first thing in the morning, I've been fasting since 8 p.m. This is ridiculous because it's killing me not to eat or drink anything tonight. All of a sudden, I'm starving and dying of thirst! Definitely psychological you say...ya think? I'm working on some creative writing with a gazelle like intensity trying to get my mind off my hunger, but it's just not working. I've decided to treat myself in the morning after I leave the lab, but treat myself to what? Hmm...should it be Starbucks or Krispy Kreme (donuts would probably send me into shock!) or a big taco? I'll let you know what I decide tomorrow...For now I'd better focus on the monologue I'm writing or I'll end up in the kitchen. Hee hee!

Super Bowl Sunday

Super Bowl Sunday was certainly super! We watched the game with friends while our kids all played and had a wonderful time. The game was disappointing until the last quarter even to ME and I could care less about football. Unless, of course, my son is playing! The food and the company was great, but I ate a little too well if you know what I mean. I went a little overboard on the ice cream tonight (AND the pretzel sticks dipped in chocolate!). Holding my head up through the football game was a little difficult, but I'm praying this is just a temporary issue due to fighting this cold. The swelling in my hands and feet is still there, but it's not any worse.

We witnessed two glorious baptisms this morning at church and I was reminded of that mountaintop moment in my journey. How unworthy I am of such marvelous grace!

Communion was powerful, but difficult because we held the elements and all communed together. My hands seem to shake almost every time I hold the small cup and the piece of cracker now. This is so frustrating to me and I find my focus shifting from the sacrifice and the glory of God, to my stupid shaking hands and the spilled grape juice in my lap! Ugh! Oh well...such is life! I need a raincoat for my lap I guess! Ha!

I think I have the egg-thing down now for breakfast. I ate breakfast again this morning and had Whataburger for lunch. The burger gave me a migraine and I hopefully learned my lesson this time. My challenge this week will be to carry a healthy snack in my purse so I don't find myself starving between meals. I'll grab an apple, cheesestick, or granola bar and put it in my purse tonight before I go to bed. I'm hoping if I don't let myself get so hungry, the shaking will subside. I have to fast Monday night though, in order to have my blood work done Tuesday morning. I don't want Alene coming after me!

Have a great week!

Socks

With CIDP, even something as simple as a pair of socks can be painful. I grabbed a pair of dress socks to wear with my boots this morning and I should've known better. My boots are incredibly comfortable and I could wear them all day/everyday, but my socks on the other hand are pure torture. CIDP changes the way things "feel" and if my socks are made with any synthetic component, it feels like broken glass inside my shoes. I know it sounds strange, but it's incredibly painful. After a couple of hours I'm just a bit irritable to say the least.

You would think I would have eliminated all socks other than cotton, but I keep hoping next time will be different. I keep hoping I'll put them on one day and feel like a regular person. When my oldest daughter was learning to put her own shoes and socks on, she'd throw an absolute fit if the toe line on her sock wasn't perfectly aligned. Now, it's ME that wants to throw an absolute fit about it! Maybe I shouldn't have been so frustrated with her about her socks back then...strange twist of fate.

By the way, I had eggs again this morning. Yea me! I had breakfast with a sweet friend of mine today. Don't you wish you could carry the burdens of those you care about sometimes? I wish I could do more for her in this difficult season of her life. I'm praying for you, Ash.

Haven't had anything for lunch yet, but I plan on doing Keva Juice (love that place!). Their Strawberry Squeezer is the best...easy on the apple juice...worth every penny! We're having a slumber party birthday celebration tonight for our oldest, so I'll have pizza for supper. I'm trying to post what I eat each day so I can keep track of how I feel based on what I eat. I'm sure diet has a lot to do with how I feel just like it does for everyone else.

I'm attempting a proactive instead of reactive approach to CIDP...actually, to my entire life. This is the life I've been given and it's a great one. It's up to me to use the resources I've been blessed with to make it a better one and bless those around me. One step was this blog, another was documenting my diet. One step at a time...one foot in front of the other.