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.

IVIG Infusion Day

IVIG Infusion Day

Well, today was my IVIG infusion day. I get these infusions weekly (every Monday) in order to treat my CIDP. For those that don’t know, let me explain a bit about IVIG.

Intravenous Immunoglobulin (IVIG) is a medication that is derived from plasma from thousands of different donors and concentrated to be administered by way of IV. What does it concentrate? Antibodies. You see, someone with CIDP has hard working antibodies. Those antibodies work so hard, in fact, that they even attack parts of the body that aren’t supposed to be attacked (in my case, the myelin that coats my nerves). Studies have shown that administering high doses of “good” antibodies helps to counteract the effects of those radical antibodies bent on destroying perfectly healthy tissue. For some, this is an effective treatment. I know it has been for me, so far. For others, not so much. Unfortunately, not everyone’s body reacts the same to every treatment, so much of it is trial and error.

So, today I went in and got my infusion. Just wanted to give you guys an idea of what an infusion day is like.

0500 – Woke up. No, not because I wanted to, but that just seems to be what happens. Took my medicine while still in bed, giving it a chance to kick in prior to testing the ole’ legs.

0520 – Up, fix coffee (decaf), fix a peanut butter sandwich to take my steroids with. Prepare my coffee with caramel macchiato creamer (mmmm…good stuff)

0530 – Spend some time reading the Bible and drinking my coffee. This is great meditation/preparation time for my day.

0600 – Get clothes ready, shower and get dressed for the day.

0630 – Make sure my girls are up and at it, warm up the car and get what I can loaded into the vehicles (depending on how I feel, it may not be much). Now, I usually lie down for about 30 minutes before leaving.

0700 – Wife and I take kiddo to school, stop for some breakfast and then on to the Ambulatory Care Center.

0800 – Called back by my nurse, Michelle. Starts an IV, gives me my pre-meds (600mg ibuprofen, and 25mg Benadryl I.V.).

0830 – IVIG arrives from pharmacy, and Michelle begins the infusion. Because this medication is derived from blood products, they have to take vital signs VERY often throughout to ensure that I’m not having a reaction. I’m not complaining, I’d rather they err on the side of caution.

0900 – I’m snoozing. The Benadryl had knocked me out, by this point. I’ve been told they can hear me snoring at the nurses’ station…oops. But, hey, it’s a great nap.

1030 – I’m usually up from my nap by this point, and having to pee. So, I get to drag my IV pole to the bathroom and back, which I’ve gotten pretty good at!

1045 – I drag out my laptop and attempt to get some work done even though I’m still hungover from the Benadryl. Usually ends up with me sending a few work emails, then realizing that I can’t get anything done in that medication-induced haze, and me on Facebook.

1130 – TV time. By now, I’m bored, tired and stiff. It’s hard for me to sit that long, and the medicine is starting to make me really tired. I’m just ready for it to be done.

1300 – Winding everything up. Generally, my last bottle is finishing up by this point, and Michelle is giving me my discharge instructions. She removes the IV, bandages me up and sends me on my way (with my chaperone, of course).

1330 – Depending on how wiped I am, we may stop and get some lunch. It’s usually at Bob Evans, simply because it’s inexpensive and on the way home. If I’m too tired, we just head home, which was the case, today.

1400 – Got home, out of the car, and barely made it to the couch before my legs gave out. From that point to now, I’ve spend the greatest portion of the day in the reclined position, sleeping or watching television.

2100 – Sitting in bed, writing this blog, hoping it makes sense!!!

Tomorrow, I visit with a surgeon with whom I will discuss getting an infusaport surgically implanted. IVIG is very hard on a person’s veins, and since I’m getting that medication every week, a port is a good idea to save those veins from damage. It’s a minor surgical procedure that usually takes about 20 minutes to perform. I spoke with several of the nurses in the Ambulatory setting, this morning, and they had some pretty good things to say regarding this doctor, so that was encouraging.

I’ll tell you, I have the greatest group of doctors and nurses caring for me! My neurologist and his staff are AMAZING, and the nurses that do the infusions are some of the best nurses I’ve had the privilege of dealing with. I have been greatly blessed in this, and could not have asked for any better.

I hope this finds everyone doing well, and may you and your family be blessed this Christmas season! 

No Spell Check

Sorry I haven’t posted in a while. Things have been busy, and I don’t like to post if I don’t have anything to say. I have decided to write the majority of this post without using my spellcheck or backspace button. Why? I think it would be a good indicator to some as to what has happened to my coordination with this CIDP. Obviously, we all make errors without an illness, but mine are quite numerous, and sometimes funny! This is going to be tough for me, as my OCD is going to kick in, and I’ll probably end up with a nervous tick by the end…but, here goes:

I do for my ltewt infusion today. I have’t had onn for a week and a half, and I’m starting to feel really tired. The doctor, last week told me he want to up the regquntcy to evey week os that he can stay adhead of the disease. This mediicing is very hard on the ol’ veins, so I also have an apopointmey with the surgeon, tomorrow to see about getting a subclavian port placed . This is supposted to make it a little easier to reciefve the medications and safv me from being studck every week. It’s a minor surgical procedure and should oly take about 20-30 minutes. The biggest risk in infrction, which if the nurses access the port properly that shouyd’t be an issue.s  So, wish me luck!

Okay, that’s enough. Was that as painful to read as it was to actually type? I mean, I make mistakes without being sick, but that’s ridiculous! LOL!

Yesterday, I made some fried rice for the family (couldn’t stand for very long, so I pulled up a stool to the stove!). What was I thinking? Me and a bunch of loose grain together at meal time? There was so much rice flyin’ it looked like someone just got married. Going to have to make better eating choices. Not just for my diet (which DEFINITELY has to improve), but for my ability to eat! If I can’t stab it, maybe I shouldn’t eat it…there’s a thought. I’m going to have to start carrying a bib. My wardrobe looks like over-sized toddler clothes with all the stains on them.

Well, I hope everyone stayed safe and warm, this weekend. It’s about time to get back to the grind. After a great weekend with the family and too much football, yesterday, it’s time to head back to work. But, I am blessed in that aspect. I LOVE my job. I LOVE my students, staff and coworkers. I can NOT think of a better place to be, right now. No place is perfect, but I am where God wants me to be at this point in my life.

Here’s to hoping all of you have a safe and beautiful Christmas season. May the blessings of Christ our Lord be upon each and every one of you, and may He keep you safe and healthy in the year to come. 

Herman Munster Ain't Got Nothin' On Me

Okay, so I’m walking through Wal-Mart (an adventure for anyone on a good day), and I start off pretty well. I’m able to heel-toe walk like a typical human being. But, the further I go toward the electronics section(which is obviously located furthest away from the front door) the more I get that overwhelming fatigue in my hips.

I decide to keep going.

Maybe it’ll pass. Maybe it’s not going to get any worse than this. I can tough it out. Heh, heh. Nope…nice try, buckaroo, but that’s not how the game is played.

You get tired, you sit down…period. There is no “pushing through.” That leads to bad, sometimes comical things. The wife and I like to call it my “bag of random tricks.” I may knock something, or someone over, may stumble and fall myself, drag my foot (which leads to the lurch forward, like I’m drunk), or, and this is the best: the Herman Munster walk. That is awesome! It’s Halloween everyday! Imagine looking like Uncle Fester and walking like Frankenstein…no weird looks from anyone, then, huh?

Oh, and the tremors are even better. Give me a whisk and a stainless steel bowl and I’m a human Kitchen-Aid. I’m probably one of the only people who can create merengue without an electric mixer.

It’s okay…laugh! I am! This disease is what it is. Things happen to everyone. Nobody gets out of this world alive, much less unscathed. Yes, this disease sucks, but there is nothing more I can do to change it than what I’m doing. So, I decided to have fun with it the best I can!

*Laugh at the things that are funny. Walking like Herman Munster, I’m sorry, is funny.

*Keep a positive attitude about the things that aren’t funny (the pain, for example). It WILL pass. And, it usually comes from over-doing it, and I can be thankful for what I was able to do.

*Remember, what doesn’t kill you makes you stronger. Maybe not physically, but emotionally, mentally and spiritually. But you have to be willing to take the experiences and LEARN from them, not just chalk them up to chance and something to be ignored.

*Try not to hurt yourself…easier said than done. Especially when you’re not the one pushing the wheelchair. Not going into detail, but I thought I’d lay that out there.

*And, finally, don’t let your condition define you. I am Aaron Taylor, and I have CIDP. I am NOT CIDP. It is a part of my life but it is NOT who I am. I will take it and use it the same way that I use anything that God has given me: as a gift and an opportunity.

“Are you nuts? A gift?”  Heck yeah! I’ve learned more about the nervous and immune systems in the recent past than I ever knew, before. I’ve learned about medications that I never knew existed (that’s awesome for us nurses). I’ve met so many new friends through support groups that I would never have had the blessing to meet, otherwise. And, to me this is the most important, I get to help others. I get to be a support to someone else, and maybe help make this a little more tolerable for them as they go through this.

So, next time you’re in the Corydon Wal-Mart…watch out. You just might get run over by Herman Munster.

The New Normal

The New “Normal”

What do you consider “normal” in your life? Please take a second and really think about that. What habits do you have? What do you feel compelled to do EVERY morning before work, after dinner? What TV shows do you almost refuse to miss? Who, in your life, do you expect will always be there, being able to do the things they’ve always done?

“Normal” is an illusion. The reason I say this, is because it holds a different meaning for everyone. What one person considers normal, another may think is just plain weird. What one person says they can’t live without, another will say there’s no way they could live WITH. So, basically, normal is what YOU say it is, and it is open for change depending on your circumstances.

We have events in our lives that change our “normal”: graduation, marriage, the birth of children, the loss of loved ones, deeply religious experiences, illness (of ourselves or loved ones), and tragedies that touch our lives. Any and all of these things can have an impact on what we consider part of our daily life. And the way they impact us can help us to grow as people, or make us want to crawl into a hole and tell the world to go away.

What I would like to discuss is what “normal” means to me in regards to CIDP. My normal has changed. Gone (for now) are the days when I could just wake up, hit the floor running and not look back until bedtime. Driving is a hit and miss proposition. Eating can be an adventure, as food generally doesn’t like staying on a fork that’s bouncing like I’m on a treadmill. And, walking like Frankenstein can take its toll on your self-image, LOL!

But, the above is now my “normal.” Until my treatments become more effective (IF they do), that’s what I have to work with. I get tired…quickly. I have to pace myself throughout the day to make sure I get through the day. I walk slower than I used to in order to make sure that my legs hold up and I can get where I am trying to go. Working out? Not like it used to be. I was doing P90X when this illness hit. Now, I’m happy to rip off 12 knee push-ups. I even eat more slowly because my jaw muscles get so tired, just from chewing. My “normal” has changed.

This happens to everyone that has CIDP or Guillaim-Barre’. We, and our families, HAVE to make adjustments to our lives to ensure that we can meet the needs of our families. There are times when we can’t go to some events; there are activities that we just can’t join in, anymore (even though we used to, and WANT to). We have to be smart about our limitations, as pushing past them can lead to feeling horrible, relapse, and even injury due to excessive fatigue (I’ve almost hyper-extended a knee a couple times).

So, why even bring this up? Seems pretty straight forward. I mean, if someone is sick they should take care of themselves, right? The problem is that people with CIDP don’t always LOOK sick. If you see someone with CIDP one day, you could think they look great, and then the next day they can barely walk. This is confusing for some. Sick is sick, and well is well to most people. The one phrase that many people with this condition hear is, “But you don’t look sick.” Ouch. Many people don’t realize what it’s like to feel like you’re coming apart at the seams, inside, while the outside seems to be fine.

With me, that’s not an issue. It’s pretty obvious what goes on with me, as I have a difficulty functioning at various times throughout the day. And, I have a great group of people that I call my family, and a wonderful employer. I can NOT ask God for any better situation in which to be ill. CIDP happened to me, and God has given me the necessary support. My family, coworkers, church and friends have all been incredible.

But, for others, they suffer by themselves. Their spouses think they’re just being lazy. Their employers don’t understand (or don’t care) and force them out of their jobs. Their friends get aggravated because they can’t do the fun things they used to do. Kids don’t understand why Mom or Dad doesn’t play with them like they once did. And there is ridicule that follows these situations which doesn’t make it any easier. Others, often, don’t understand that those with CIDP WANT to get up and go as they please. They WANT to do their jobs, effectively. They WANT to still go and hang out with friends and WANT to play with their children.

And, they CAN. They just have to make adjustments. They need to be able to rest when they need to. They need the time off for treatments. The activities may need to be altered as to not promote a “flare up.” But, this takes understanding of ALL parties involved. It takes patience. And, it takes love.

This is not to make anyone feel guilty. This is just me stating where people with CIDP are coming from. There are going to be “woe is me” days. There are going to be days when I’m just mad at the world for having to deal with this. It’s not personal…it’s just me being human. And there are going to be days when I am happy, doing well and not complaining a bit. That’s what happens with this disease and how it affects us.

Please know that, personally, I am grateful to all those who have been a comfort and support for me and my family. I don’t want to list people by name, as I’m afraid I’ll leave someone out, and I don’t want to do that. The one I will mention (and will ALWAYS mention) is Jesus Christ. He has helped me more than anyone. He has been my confidant, my guide, and my comfort through all of this. There is no way that I get through this without Him.

About CIDP and Guillain-Barre' Syndrome

Since this is the first time I’ve ever “blogged,” I hope that you’ll be patient, as this may seems like indiscriminate rambling.

My intent with this is twofold:

 1. To get information out about a condition known as CIDP. I want people to understand the effects it can have on the patient, their families, their work and just their overall well-being.

 2. I need to vent. Having dealt with this disorder for a little over a month, now, I can tell you that this disorder sucks on gigantic proportions and there are times that I just want to rail against feeling so darned bad.

What I want to do, first, is tell you a little bit about CIDP (Chronic Inflammatory Demyelinating Polyneuritis). Many people have heard of Guillain-Barre’ Syndrome, but not many have heard of its cousin, CIDP. Guillain-Barre’ Barre’ (which usually sets in after the patient has had an immunization or the flu) is an acute (short lived) disorder of the autoimmune variety. Meaning, the patient’s own immune system attacks them. In the case of Guillain-Barre’, the immune system attacks the patient’s nerves, removing a signal-conducting coating known as myelin. With the myelin removed, nerve signals cannot travel to the muscles, thereby rendering the patient immobile. This is very dangerous, as ALL muscles may be affected (including the diaphragm), and the patient may need to be placed on life-support. Guillain-Barre’ comes on very quickly, usually reaching its peak in 3-4 days (sometimes a week). It can take several years for a patient to regain their strength, and most (85-90%) make a complete recovery. To date, it is unknown how or why Guillain-Barre’ occurs. It has been speculated, however, to have a genetic component.

CIDP is known as the chronic form of Guillain-Barre’. CIDP can come on over a period of weeks, but progresses, usually, much more slowly. Weakness, tingling and lack of coordination in the lower extremities are usually the first signs that there is a problem. Pain in the lower back may make the patient believe that they have a back issue, and delay getting checked out (I am guilty of that). The disease mechanism for CIDP is very similar to Guillain-Barre’. Myelin is removed from the nerve endings, but also affects sensory nerves (touch, taste, smell) as well as motor nerves. Weakness/stamina are the biggest issues with CIDP, with patients reporting that they have markedly decreased endurance. Imagine trying to run a 400hp electric motor using stereo wires to conduct the power. That’s just not going to happen. That is what it is like trying to get your body to run without myelin on the nerves. The signal won’t conduct, so the muscles won’t work. So, while CIDP is not as aggressive, it is more persistent. CIDP can last anywhere from a couple of months to the rest of the patient’s life. It has been shown that the longer the patient has the active condition, the less likely it is for them to make a full and complete recovery.

Treatment for both disorders is very similar in practice, but varies in scope. With Guillain-Barre’, the treatment is aimed at getting the acute phase of the disorder handled, and making sure that there are no life-threatening implications, such as the loss of the patient’s ability to breathe. Plasmapheresis, IVIG infusions, steroids and ventilator support may all be used (although plasmapheresis and IVIG are the two most accepted treatments). Once the acute phase is under control, therapy for GBS patients is essential. Patients need to re-learn how to walk, eat, bathe and other daily tasks that their muscles/nerves have forgotten how to do. This portion of the recovery was often overlooked in the early treatment of GBS, but has since been recognized as one of the most important aspects of treatment.

CIDP is treated with plasmapheresis or IVIG, along with high dose steroids, gabapentin, baclofen and other medications to deal with the various symptoms. IVIG (intravenous immunoglobulin) is given at a dose/frequency determined by the physician. The dose is based on patient weight (which needs to be monitored while the patient is on steroids) and the frequency is based on how well the treatment is working and how long the effects last. These infusions may be given at home by a nurse, or the patient may go to an outpatient center at a hospital, as the patient has to be monitored for any signs of a medication reaction. The medication is given at a very slow rate to minimize the chance of a reaction, and may take up to 4-5 hours. Some patients receive these infusions so regularly, that they need to have an implanted port surgically put in so as to “save” the veins in their arms.

To speak, personally, I am currently undergoing bi-weekly treatments of IVIG, and I am on gabapentin and steroids (although I am tapering off the steroids). To this point, the IVIG has helped, but for very short periods of time. The doctor says I may need to go to treatment every week, but we’ll see. I am very fortunate that I have a neurologist who understands this disorder, and is working diligently to help me get it under control. If this is something that I’m stuck with for the rest of my life, so be it. I would love to see it go away, but the evidence has shown that probably won’t be the case.

One thing I do believe in, however, are miracles. Sometimes those miracles don’t come in the form of healing, but in the trials and tribulations that come your way. They redirect your path and show you where you’re going wrong. Sometimes, they show you what’s important. I will accept whatever it is that Jesus has in store for my life, as He is the one who made me, and He understands where my meager mind fails.