Personal Log

The combination of a patient who does not speak well and a doctor who does not listen well is clearly a train wreck waiting to happen. No reason for fault finding, it is what it is. Part of my daily routine for some times has been to write in a journal eventful things. In an attempt to better communicate with the doctor my progression of CIDP, I’ve started tracking my symptoms in my journal. I am also logging because I want to have a perspective over time. The focus for me is usually “in the moment” which has the potential to distort reality.

Summary of condition for Dr Shabani Visit on February 15, 2018

1. Feet completely numb and pain level (5) at night.
2. Ankles shocking pain 7 when rotating during yoga session.
3. Tingling moved from back of legs and arms to front, back, back of neck, chest and roof of mouth.
4. Back pain, walking and breathing becomes labored after walking for 10 minutes or more.

Conditions after 3rd Steroid Treatment February 24th, 2018

1. Feet no longer hurt and began tingling again.
2. Walking much easier with distance.
3. Fatigue and labored breaking is worse (8).
4. Tingling is almost non-existent in legs and chest. Arms front and back a little less.

Condition after last Treatment February 26, 2018

1. Noticeable increase in feet and lower leg tingling (7). Arms and chest tingling is almost non-existent. Right calf seems to ache most of the time (3).
2. Severe fatigue and heavy breathing for a short time after treatment.
3. Assessment seems to be where I was when symptoms first started but in both legs – not just the right.
4. Noticeable weakness when raising arms for short time.
5. Slept little 1st and 2nd night. Rested well 3rd night and remaining nights.
6. 4th and 5th days seemed more high strung.

Condition log February 28, 2018

1. Left work early. Nausea started last night, generally not feeling well.
2. CIDP symptoms seem to be back at the same level – a little stronger with tingling
3. Feet and right leg up to knee hurts (4).
4. Tingling areas: Arms and shoulder (8), legs (5), feet (4), chest (3).
5. Overall weakness (6) most prominent in arms.
6. Breathing not labored all the time but seems to be tired chest, not lack of oxygen.
7. Back pain (3) from strain – possibly from change in how I walk.

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Help is on its Way

Yes, I should be grateful. I am grateful. Another trip to Houston for a followup consult and a plan is in place. This afternoon I got a call from Home Health Care and a 5 day IV steroid regimen will be sent FedEx to the house. Hopefully when the five days are up, life will be as it was.

What happened that would have dampered such glorious news? My neurologist broached a subject that I am ultra sensitive to – anxiety inflicted symptoms. Clearly I am biased on what I am experiencing which I have mentioned in previous posts – I’ve questioned how much of the fatigue is “real”. I cannot explain how or why nerves seem to be affecting my muscles as they have. I would expect blood pressure, lung capacity or oxygen levels – but nerves? I cannot say definitively how much is self inflected and how much is CIDP. I do know that in a span of less than a month after being relatively healthy – I now struggle to walk and I am completely washed out by the end of the day.

I think that one of my problems is that I have been trying to compensate my struggle to walk with more oxygen. Any distance other than room to room feels like I have run a mile. In my mind either consciously or subconsciously I have been breathing heavily thinking that it will help strengthen my muscles. From now on — feel the urge to breathe more — fight it. Lack of oxygen isn’t the problem.

It amazes me that the diagnosis is based on my ability to apply upward pressure for 2-3 seconds with my right leg and right arm. Is it within the realm of possibility that fatigue cannot be measured with this methodology? Certainly over a long period of time a doctor could comparatively surmise that degradation has occured, but not just after two visits.

No doubt I am super sensitive to the suggestion and I will get over it. It’s just not something that I expected to deal with. I left the consult feeling that my symptoms were not taken seriously, the doctor at times joked and even mocked me for my questions. It was a demoralizing session. I have been encouraged by several that Houston is the place to be. Treatment will continue to be the focus and Houston (with this doctor) is where I need to be. The doctor quoted his experience for CIDP is 20% never take treatment and it just goes away; 70% with treatment – CIDP goes away or goes in remission.

Grateful that the end is in site, grateful for the odds and trusting that God is in control and nothing else matters.

Life is good.

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Change of Priorities with CIDP

I have committed to once again do yoga on a daily basis. I have read a couple of books in the past that enumerate several benefits – one was Scott Eblin’s book Overworked and Overwhelmed. Scott was diagnosed with MS in 2009. I do not pretend to know enough of CIDP or MS to have any expectations on how yoga can help with CIDP. I just know that I cannot continue on this downward trajectory while I wait for treatment. Last night after coming home from work – the slightest movement left me gasping for air. I have given a couple of half hearted efforts in the mornings since my diagnosis but never on a consistent basis. This morning I made it through a 15 minute session and focused primarily on breathing. It was a good workout. The tingling sensation radiates significantly with circular motions in my hands, arms and feet. For the last 2 days, the sensation has changed a bit to also feel a little heat and my back is now having sensations. I was encouraged with my breathing during the “yoga” session. It is most likely that subconsciously or involuntarily my body is in a panic state and I have been taking short shallow breaths.

Stem cells could be on the horizon. I will be bring it up on my followup consult in Houston on Thursday.

Last night I was very discouraged but this morning after a somewhat restful night and an end to a long work week, I am looking forward to a productive day working on a long neglected to do list around the house.

Life is good.

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One Annoyance from CIDP

I would have to say that one of the most noticeable annoyance CIDP has given me is that it has turned me into a mouth breather. Unless I am in a chair or laying down – my body constantly feels deprived of oxygen. This is one aspect of CIDP that I do not understand. I was diagnosed with this rare auto immune disease last week. I was a relatively healthy individual about a month ago with no noticeable issues. One month later and I’m struggling to breath with the slightest of motion. I have the same lungs, the same lung capacity, the same muscle density. The only difference is that my nerves are under attack by my immune system.

At times I question how much of what I feel is in my mind. At times I try to focus on ignoring how my body feels and other times try to focus on everything but the symptons. Nothing seems to work. The most difficult thing for me to do is raise up from bending over or from sitting. Doing so just seems to suck the life out of me.

From the response of most people at work or church seem to have the impression that I am in pain from my movement. There is no pain other than the biopsy site – just utter fatique. The tingling sensation is in my arms, legs and back. There are times I struggle with writing. In my line of business, most is done on the computer so my productivity has not suffered that much at work. I am still waiting to start treatment. I’ve had a couple of calls into my neurologist here locally. The plan is to start me on steroids as a short term approach. Long term may be either the IV monthly treatment. I am also exploring the possibility for stem cell treatment.

I am so grateful for a loving wife who has cared for me. I know that there’s a 13% chance that I could be severely disabled. My church family has also been supported and their fervent prayers are appreciated.

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Finding the name

Up until just recently I had never heard of CIDP. I had suspected that I had neuropathy for several months but my doctor insisted that I was too young. I had only had issues with my feet, but one morning I noticed that the tingling sensation had moved up the right calf. Neuropathy was still suspect since it was only on the right side. On January 31, 2018 at 4:44PM I was diagnosed with CIDP.

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Why Micromanagement Is Really a Trust Issue (and What to Do About It) | Eblin Group

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Is Repetition Enough?

I have read books and listened to several blogs that discuss methods for developing good habits. The window for repetition generally is twenty to thirty days. The thought process is that after repeated behavior changes, we either drop our old habits or develop the desired new one.

I have a task that I perform without fail every day. It is to take a daily vitamin and low dose aspirin. I can only accomplish this by using a pill box. It requires little thought or effort, the benefits are without quesiton; yet I can never remember if the pills have been taken. Question: if I can not remember if a task has been done – how can it be that it can be considered a habit?

One could propose that the answer would be to take the pills as soon as you take your first cup of coffee. And therein lies the focus of this blog. I would like to discuss two thoughts:

Repetition is not enough – triggers are the key.

Habits are shallow – disciplines are life changing.

More to come. Life is good.

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First Things First by Stephen R. Covey

Step two: Identify your roles. Pain in life comes from neglect in one or more roles due to the neglect from focus on other roles. The ideal balance isn’t from spending time in each role, but from utilyzing roles to accomplish your mission. Role change throughout life but consider including personal development and sharpen the saw (physical, social, mental and spiritual). Covey suggests that we spend so much time focused on sawing through life that we forget to sharpen the saw.

Roles should not be depatmentalized but should be viewed as a whole. Set goals for each role. “The key, however is not to prioritize your schedule, but to schedule your priorities”. Analogy of putting rocks in a jar is that if you don’t fill the jar with big rocks first, you’ll never get them in the jar.<br>Set a specific time of the day for goals. Quadrants I and III usually do not have any problems grabbing our attention. Deliberately methodically place big rocks in the jar.<br>Life is good.

I have in my schedule every year around Thanksgiving to replace the batteries in all the smoke detectors in the house.  I have been an outside consultant since ’89.  One year my wife called at 3am in the morning with two smoke detectors chirping due to low batteries.  We ended up in a crisis with me being out of town with chirping smoke detectors 14 feet up in the air in the wee hours of the morning.  It is important for me to replace batteries in the smoke detectors once a year.  Neglecting to do so could end up turning into a crisis.

First Things First – Kindle

Life is Good.

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The Effective Manager

Reading the Effective Manager by Mark Horstman

Does 4 things:

  • Gets to know your people.
  • Communicates about performance.
  • Pushes work down.
  • Asks for more.

Know your people through one on ones. Single most do as manager to improve – get to know strength and weakness of people. Most efficiently is meet regular. Not strategy, task assignment, resource planning or prioritization: it is in getting to know your people who has the skills and get the work done. Short term effective with threats. Retention if included sours. Do not treat everyone the same. Everyone does not want to be treated equally.

Top performers expectations are different. Most managers manage the way they want to be managed. The problem is that it only works with people like you. People and behavior is what will deliver to the organization, not system, process, computers, machines, results are the primary responsibility.

The Effective Manager

Audible – The Effective Manager

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Article: The Science Of Gratitude And Why It’s Important In Your Workplace

The Science Of Gratitude And Why It’s Important In Your Workplace

Many studies also on the health benefits. 

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