Week 1 - Day 1

Okay, I told everyone that I would keep you updated on the clean eating. And, as promised, I will give you my... ahem... starting weight. 218lbs.

The meal that I decided to start changing is breakfast. Got the amounts that I should eat from a clean-eating friend of mine, and here is what breakfast looked like, this morning:

I don't know about anyone else, but that's a lot of food. I was able to finish about half of it. It was good, just too much. Maybe as my body gets used to not having the continuous, sugary/salty snacks all day, I will be able to eat more of the healthy foods.

Anyway, that's where I am now. I will continue with breakfast all week, and will make another change, next Monday!

Aaron

Clean Eating

Hello All! Hope this entry finds all of you doing well!

It has been a... different past few weeks. Apparently, my body decided it did not like one of my CIDP treatments, anymore, and decided to start "reacting" to it. After many medication adjustments, we THINK we may have finally worked it out so that I don't have that issue, anymore. Which is good, because this treatment really helps me, and I don't want to have to stop receiving it. So, any thoughts and prayers you can send my way for that would be greatly appreciated!

But, the reason for this entry has more to do with something that I've been hearing about for the past year or so: clean eating. When I first heard about it, I automatically dismissed it as the latest fad diet. Lord knows there are enough of those out there. However, the more I heard about it, I started to get curious. So, I did some reading about it, here and there. No serious research into it mind you, but some light reading.

Then, the other day, a friend of mine from the hospital came down to see me when I was receiving my treatment. I couldn't believe how much she had changed. She had lost weight, and looked healthier (she has lupus) than I had seen her look in years. I asked what she had been doing and she said, "Clean eating." She said she hadn't felt this good in many years, and was off of her medications for the lupus. It was time for me to do some more reading. So, I did.

Turns out, clean eating isn't just about weight loss. Those who try to practice it say that it's about returning to the way we ate years ago, removing a lot of the junk and processed foods that have become staples of our diets, anymore. By getting back to the older ways of eating, our bodies have a chance to deal with illness and disease in the ways it was intended, instead of having to battle what we put in it, as well. Clean eaters also claim that this type of eating habit can help reduce inflammation and increase the body's immune system strength.

Now, I don't know if any of this is true. To be honest, I am naturally skeptical and don't buy into things, easily. But, after doing my research and listening to my friend's story, I was willing to give it a shot. After all, what could it hurt?

So, that's where this post comes in. I want there to be record of what it is I'm doing and if it works. I am going to officially start on Monday, after I've had time to get familiar with some of the recipes and types of foods I should and shouldn't eat. On Monday I'll also post my beginning weight (I must really like you guys) and what meds I'm on (for the CIDP). As time progresses, we'll see if my weight comes down and/or my medications can decrease.

This is going to be a slow process, though. I am only changing one meal per week (breakfast one week, lunch the next... you get the idea). I am doing it this way so that I can be sure not to overwhelm myself and ensure that I stick with it. I will report my stats each week (on Mondays), and I'll be sure to be honest about whether or not I was sticking closely to the plan.

If any of you have any questions, please feel free to let me know on here, or on Facebook. I am happy to answer any and all questions.

Prednisone

Hi All!

It's been several months since my last post. Suffice it to say that not a whole lot has changed. It appears I may be at the point where I'll be for a while, if not forever.

I attempted to ween myself off of prednisone about  a month ago (with my doctor's approval). That did NOT go well. My symptoms returned in just a couple of days.
The reason I bring this up is for those individuals who hate what prednisone does to the body. It makes the body retain water, gain weight and overall can make a person feel very uncomfortable, especially at high doses. What I would like for people with this condition to consider before coming off of steroids is this: are the side effects of the medication worse than the symptoms of the disease, itself? And, be honest. Is a bit more weight around the middle worse than the inability to walk? Is the often-excruciating pain better than some fluid retention and the need to take some supplements? In my case, the answers favored taking the prednisone.

What we have to do, as CIDP patients and medication, is a benefit to risk analysis. Is the benefit greater than the risk (or side effects, in this case)? We make these decisions, every day. When getting something to eat or drink, when deciding what to wear. When determining where/when to stop for gas. Just with medication and illness decisions, the results can, and often do, have dramatic effects.

Foremost, make sure you talk to your doctor before making any of these decisions. The doctor has prescribed these medications for a reason. Obviously, we go to these doctors because we want their help. Making wholesale changes to their treatment plan without consulting them can be dangerous. This is coming from a nurse who's done it. Not smart. It's kind of like hiring a lawyer, then representing yourself, anyway. Always keep your doctor in the loop of any and all disturbing or uncomfortable side effects or issues. Just don't make the changes before that conversation happens (unless it is something dangerous - like some type of SEVERE reaction. At which point, you should seek medical attention, immediately).

I guess, overall, what I'm saying is use common sense. Talk with your doctor, as he/she is your partner in improving your overall health!

Here's wishing you a Happy Independence Day! I hope the love and comfort of our Lord Jesus Christ shines upon you, your family and our great nation.



Please understand that this blog is not meant as a replacement for the advice of your health care professional. It is for informational purposes, ONLY.

Over a year, already? Wow.

Hi All! It has been almost a year since I've posted and over a year since my diagnosis with CIDP. You know, it's not that I don't have anything to say about CIDP, it's just that I don't want to bore anyone with it. Nobody wants to hear(read) about someone's daily trials all the time...that would just get depressing (for you AND me).

So, I took some time off. In that time, though, I've had some treatments that have done well with me and others that went over like broccoli at a kid's birthday party. I still get the IVIG every week. I want to thank anyone that donates plasma, as that is where my medicine comes from. It is very expensive, so I'm definitely thankful for insurance, as well.

One treatment that my neurologist is trying is the use of immune - suppressants. For those that don't know, those drugs knock down your immune system. In my case, it is to prevent my immune system from attacking, well...me. The first drug he tried was one called Imuran. I did feel better for a while, but it started making me really tired because it decreased my hemoglobin (the part of the blood that carries oxygen). Since that didn't work, he's trying another known as Cellcept. So far, so good. He just upped the dose, so we'll see if my body can hack it! LOL!

Something fortunate happened to me that many people may have seen as a bad thing... I lost my job. It was very difficult at first, as I wasn't sure what I was going to do with myself! But, it has given me time to heal without all the stress I was under before. As you probably know, stress is VERY bad for the nerves! I'll be back to work, soon, but hopefully not as much stress! :)

Wow. It has really helped me to be able to blog like this to all of you. I guess I didn't realize how therapeutic it is for me to do this. I guess the Lord has made a way for me to get things off my chest and I just need to use it. He has been far better to me, lately, than I have been to Him. I don't deserve His blessings, but I thank Him for them, all the same.

I hope this finds all of you happy and healthy!

- Aaron

Symptom Shift

Hey…I’m back. Yeah, yeah. I know it’s been a while since I’ve blogged. But, you see, I have this thing people call a “life,” and I was busy living mine. LOL! But, I’m back, and I’d like to share what’s been happening with me and my body’s unwelcome cohabitant, CIDP.

Many of my sensory symptoms have really let up, lately. Could be due to staying on a strict gabapentin regimen, or it could just be the natural progression/regression of the disease. It’s one of those things that I’m not sure if the change in symptoms is a good thing or a bad thing. Anyone from the outside, looking in, would say that it’s a good thing. But I’ve had a trade-off. My weakness seems to be getting worse. So, that’s something that the doc is going to have to wrap his brain around and let me know what he thinks. I don’t go back to him until March, but I’ll probably end up calling his office just to update him and see what he wants me to do.

I am trying to still exercise, when I can. Nothing major. Like most know, I was doing P90X (and doing it well, I might add) prior to getting sick. I am doing nothing even CLOSE to the warm up in P90X. I did, like, two games on Kinect Sports and I was ready for a nap. But, I did it. My lack of coordination has me looking like the Scarecrow from the Wizard of Oz (no brainless jokes, thank you). But, I did it. I have gotten to the point that I will push myself as hard as I can. I used to try and conserve energy and try not to get too worn out in order to make it to the end of the day. Forget that. I am doing what I can each and every day. Every minute of every day. Otherwise, my body is going to close up shop. As an instructor, I ask my students, “How do we tell our bodies that we want them to do something?” The answer, “We do it.”

If we want our lungs to work better, we walk, run or do some sort of cardiovascular exercise. If we want our muscles to get bigger, we lift weights that challenge them. If we want our nerves to work better, we do things that make our bodies conduct the nerve signals. So, if I want my body to get “better,” I need to do things that tell my body that I WANT it to get better. Sitting around on the couch and not doing anything is no way to get that message to my body. Sure, it gets frustrating sometimes. There are times when I shake really bad, and it makes it difficult to do much of anything and I HAVE to rest. Okay, CIDP…you win THIS round. But we’re gonna go ‘round again.

I would like to end this by asking for prayers for many of my friends and family. Whereas, I am dealing with a chronic disease, it is not threatening to end my life, nor has it stopped me from being able to work or spend quality time with my family. But, I have friends and family members who are suffering, right now. They are dealing with heart and lung disease, cancer, and others have recently passed away. Whatever prayers you may have said for me, say for those in my family who are ill. I have felt the hand of the Lord in my life, I know He watches over me. And I know much of that has come from the prayers of my friends and family. What a wonderful God we are serving! With all of the trials in life, none are so bad as to negate the blessings He has bestowed. That the One who hung the moon and the sun, makes the seas to rise and fall, put the stars in the sky and pushes that small blade of grass through six inches of concrete…He loves and takes care of me.

I do hope that this finds you all safe and warm during this bitterly cold winter. Please, stay safe and enjoy the time to get holed up with your families!

Just Plain Tired

Just Plain Tired

Okay, today may not be the usual spin on my disease. I try my best to be as light and as nonchalant as possible. But, sometimes, I just can’t. Sometimes, I’m just plain tired. Tired? Yep, that sums it up.

I went to work, today, after a pretty crappy week. Now, it is 6:50pm, and I’ve taken my medicines, sitting in bed, eating my crunchy peanut butter and honey sandwich waiting to go to sleep. What an existence. Sounds great to some, and it would be, if this was what I wanted. But, it’s not. I would love to be up and about, still doing my P90X, maybe even working in the garage since it’s not too cold out. But, when you’re forced to do this by your own body, it isn’t any fun.

You know what’s weird? It’s the type of tired. It’s not a “well, I’m a bit sleepy,” or “if I just rest a minute, I’ll be good.” No. It’s an “I’ve been going full-bore exercising to muscle failure” kind of tired, and nothing makes it better. The shaking gets worse when I get this fatigued. This blog has been kind of a chore, as my fingers aren’t wanting to cooperate. It’s amazing how out of breath just trying to take a shower will get you.

I try not to get frustrated, but I always have the thought in my head, “I get to do it all over again, tomorrow.”

Whee.

But, it could be worse…I could wake up in the morning not able to do what I did, today. I am able to maintain my current level of activity. This is not the case for many people, and I should be (and am) thankful for that. I could be in a situation where I was unable to rest when I needed to, but God has provided me a life where I’m able to do what I need to in order to cope with this disease. How can I be bitter when there are so many so far worse off than I am?

I wanted to let everyone know how much I appreciate you following my blog posts. It is, and always has been, my intention to help those that deal with chronic illness, or who are just looking for ways to help their loved ones cope. It is my hope that some of the information and insights that I’m allowed to bring to light may be a help to someone.

Thank you, again! And, may the blessings of Our Lord and Savior Jesus Christ be forever with you and all those you hold dear.

Port Day!!!

Well, this blog is going to be a little different. I am going to be blogging over the next couple of days, just to see how my outlook changes based on how I’m feeling.

Day 1: Well, tomorrow I get my port implanted. For those who don’t know, an implanted port is a device that is placed under the skin on the upper chest that has a line that is inserted into the subclavian vein. It is a device that allows for infusions and blood draws without having to get stuck in arm veins. I am a little nervous. It is a minor surgical procedure, but it is a surgery nonetheless. Any time someone is cutting into the ol’ body, the body doesn’t like it.

After speaking to the doctor, yesterday, I am confident that he knows what he is doing. He is a surgeon, and they by their nature tend to be kind of arrogant. But this guy seems to not like to take chances. He is going to try and insert the port more toward my shoulder (still in the chest), than my collar bone. He says this reduces the risk of a pneumothorax (collapsed lung). Yeah, I’m good with that. The down side is that if he doesn’t find a vein more toward the shoulder, he’ll have to go in by the clavicle, anyway, and then I’ll have two incisions. Oh, well. Better a second scar than a chest tube.

I also hope I don’t say anything stupid. They aren’t putting me completely out. More than likely, I will be given a drug known as Versed. This drug is known for making patients very drowsy, but able to be roused. It also causes amnesia. So, I may be aware of what is going on with the procedure, but won’t remember any of it. That’s just freaky. The anesthesia nurse called me, today, to make sure I got my preop orders and that I understood what I was having done. She asked if I had any adverse reactions to anesthesia in the past. I told her that unless bad jokes count, no.

Well, I suppose I’ll wrap this part up. Here’s hoping that I am writing to you from this same position on Thursday, and not from a hospital bed! Wish me luck!!!

Day 2

Too many drugs, too much running to blog, yesterday after the procedure. This morning, however, I’m doing well. The worst part for me, at this point, is the sore throat where they had to place the LMA – laryngeal mask airway. Not quite as traumatizing as an endotracheal tube, but not comfortable, either. So, here is how the day went, for me:

1.       Arrived at the registration desk @0750 (was told to get there at 0800)

2.       Got registered and taken back to my room at around 0830.

3.       Nurses/aide took vital signs, weight, and had me get into that sexy, backless number that all sick people find appealing. The aide then performed a friction scrub of my chest to ensure there were no contaminants that could cause infection. The nurse started an IV, got my fluids running and swabbed my nose to check to see if I had any colonized MRSA (I don’t to my knowledge).

4.       Anesthesiologist came in, confused me with another patient…not happy about that. Luckily, the surgeon was with her and straightened her out. She went ahead and ordered “relaxation” medication…night, night. (By the way, my surgeon was wearing a Cincinnati Bengals surgical cap, so his cred with me went through the roof).

5.       My procedure was to be at 1000, and I woke up at 1200, without anything having been done, yet. I, at least, got to nap. My wife sat there awake the whole time, poor thing.

6.       At 1220, the OR nurse came and got me.

7.       1230, I was in the OR. The anesthesiologist explained everything to me, placed a mask over my face and said my IV might burn, a bit.

8.       I wake up in my recovery room at around 1330. Very little soreness, but sticky from iodine (they use that to sterilize your skin prior to procedure).

9.       I was told by my nurse to keep the dressing on until Saturday, when I could then shower, also. I have a scopolamine patch behind my ear. What’s scopolamine? It is an antiemetic drug that helps reduce sea-sickness in travelers, and can reduce oral secretions. The anesthesiologist wants me to keep it on until Saturday to make sure I don’t get nauseous coming down off the meds.

10.   Overall, the rest of the day went well, even though much of it is kind of blurry.

Day 3

Woke up at my usual 0300, due to my steroids. Some soreness in my chest, but my throat is STILL worse. Got something to drink but just not real hungry. Usually, I would spend time in the Bible, this morning, but my eyes are so blurry it’s kind of tough. Typing is one thing, I can adjust the font…not so much with The Good Book. So, I’ll wait a bit before attempting my morning study. I am feeling better, today, than yesterday.

Oh, I forgot to say that the nurse gave me some great info about the port. I didn’t realize that I had to carry medical alert materials to let people know what type of port I have, or they may not be able to use it! I have a wallet card, a keychain card and a gray/purple bracelet that I wear to alert people that I have this thing.

All in all, I’ve been pleased with my experience. I know the port is going to be better than getting stuck for IV’s more than 52 times a year.

I got much support from friends and family, and I really appreciate the advice, prayers and good thoughts coming from my CIDP support group. Many of them have been where I am, right now, and do make this little journey a bit more bearable.

But, as is always the case, I will give the utmost thanks to Jesus. Without His guiding hand, there is no telling what kind of mess I could be in. He is my rock and my salvation, my master and my friend.

Thank you for taking the time to read this! I will post again sometime in the next couple weeks.