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!
Wednesday, February 27, 2008
Tuesday, February 26, 2008
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.
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.
Wednesday, February 20, 2008
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!)
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!)
Monday, February 18, 2008
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?
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?
Friday, February 15, 2008
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!
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!
Tuesday, February 12, 2008
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!
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!
Monday, February 11, 2008
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!
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!
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