The less I try to make things fit into my preconceptions, the more they make sense.

Two things that people often tell me are that I have low self esteem and that I make things too hard for myself.  So, when I saw that the next group was going to be on shame and guilt, I prepared myself for a grim and fruitless struggle with my guilty conscience knowing I would never be free from the bondage of my shame.

When I think about my shame and guilt, it is through a  lens of what (I think) a healthy, normal person would have done, not someone with the disease of addiction.  That is how sneaky it is; we addicts are more comfortable seeing ourselves as mean spirited, lying, manipulating, stealing, evil minded selfish monsters than admitting we are sick people.  People who, if we were in our right minds, would never have done the messed up stuff we did while in our addiction's sway.

And it was our loved ones that got the worst of it; their love and trust was a great resource for helping feed our addictions.  But that addiction is an illness.  Instead of attacking  on a cellular level like other illnesses, addiction clouds our judgement and makes us susceptible to making bad choices.


Emotions like guilt and shame are useful only because they warn us that other people can have real consequences of our behavior. In order to stop me from hurting other people, I built a jail and lined the walls with my shame and guilt.


Our facilitator asked if, since we got clean, were we still doing shameful things?  I can honestly say that in the last 24 days, I have not. I did those shameful things because I am sick, not because I am a bad person.  I am a pretty decent fellow, capable of loving and being loved, respecting of others and worthy of their respect.

Alcoholics and addicts in recovery strive to change their behavior first, then their thinking.  Next, we are urged to "clean house" by examining our old bvehavior, especially those behaviors that affected others and making amends to them.

I have been sick for a long time, not just the last few years.  My drinking and drug use has always been irresponsible since I was 19 (the drinking age in Ohio in 1983).  One of the things that has motivated me these last 3 weeks is that I have 20 years of amends to make.

In movides and TV,when ever some goes into recovery from addiction, they immediately begin to make a series of awkward and insincere amends.  They are apologies are for their benefit only,  "I don't want you to be angry at me any longer." or their amends are simply thinly disguised resentments.

Right now, I am working to get better.  Until then, I won't be able to process and appreciate my responsibility in my actions.  Only then, will I feel worthy of asking you for forgiveness.

Until then, every day that I don't use, I get stronger and my disease gets weaker.

On Being a TAB

I love the church we joined, it has been an amazing experience for me.  However, going to a Methodist church in a red state is an experience unlike anything I had seen previously in my swinging, hippy liberal churches in the north.

But when in fellowship, God's love is present, flowing through everyone and to us all.  Way better than intermission at a Dead show.

There is one couple that Adrienne and I had a bond with from the very first time we saw them because she is the primary care giver to the husband, who late in life became afflicted with a debilitating, chronic illness that affects his nerves.  There was a period when they thought he would never leave the hospital, let alone walk again.

But he proved them wrong.  He gets around with his walker and motorized wheelchair and has a daily exercise regime that is truly impressive.  He spends hours everyday, either at the gym or in the pool, working out.  She, of course, is tasked with the things he cannot do for himself.  She told us about the many steps she has to go through whenever they travel; on over night trips, she has to repeat the process every morning before they can leave the hotel.

Today he shared that he has suddenly lost a significant amount of strength in his legs; this is never good news.  Even though even though he didn't sound upset or even concerned, I felt alarm for him and his wife.  


Of course, I quickly realized that that is going to happen to me someday.  I mean, happen to us.

For a while there, I used to rail at the TABs (Temporarily Able Bodied), but I stopped when I rejoined their ranks.   Most of the time, I take it for granted that I will never be paralised again.  The weight of that knowledge is too much to carry around everyday.

Good News

It turned out that my potentially new doctor was an even bigger tool than my present one so I decided to stay with the devil I know.  The guy took a phone call during our meeting, badgered me to hurry up, then abruptly ended the appointment, telling me to make a follow up.

Plus his office staff was really rude.

I will  say this for my present doctor, I needed to have five prescriptions refilled this week and his office got four out of the five sent to the pharmacy before they close of business.  Although, of course, all without returning any of my calls.

But, I said there was good news to be told and here it is:

I had asked for a consultation with a pain specialist and yesterday was my appointment.  I was there for three hours before I got to see her-all of that spent waiting.  The only reason I stayed that long was so I could give her a piece of my mind about leaving me waiting so long.

Anyway, I am glad I stayed.  Not only did she have some strategies to help me, she also thinks I can get along with out my AFOs!  It is going to take some therapy, time, and probably some sweat also, but WAHOOOIE!

In other news, I decided to attend the stone setting at Natasha's grave in June.  It will be nice to see Vermont, especially some dear friends there.

If the thunder don't get you, then the lighting will

Tomorrow is the second anniversary of my first hospitalization and since anniversaries are significant, I haven't been able to think of little else this weekend.  I have been grieving my old like, my pre-disability life horribly;  I miss bending over to get something out of the cabinets, walking in a straight line, etc.  Lately, when I think about those early days, I am gripped with horror.

Before CIDP,  I lived my life swinging from pollyanna to panic. I spent half of my life telling myself that I would be lucky and escape the tumult and turmoil others had.  When I wasn't telling myself that, I was paranoid, crippled with fear that the opposite would turn be true.

A Simple test

I discoivered a great test to find out if I am being listened to; If the person speaking to me continues to talk after I have told them I agree with them, they have not been listening to me.  I asked my new doctor for a percocet refill, he agreed.  When I told him my last doctor had wrote a 90 day prescription, he freaked out and began to lecture me on why he refused to do that.  I never asked for a 90 day supply, my old doctor gave it to me and being new to the community of prescription narcotics consumers, I thought nothing of it.  I certainly don't have a problem with doing it monthly and I told this guy that, but he continued to lecture me about the inapropriateness of asking for a 90  day prescription.

And when all was said and done, he doubled my dosage.  What a jack ass.

Anniversaries

This was me, a year ago.

God is good.

I've given myself permission to spend today in bed, even though it looks great outside and the temperature is (relatively) cooler.  Tomorrow is  my first IVIg in 31 days.  This is the longest I have gone between infusions so far.

I am not sure if that is why I feel so rotten (really tired, lots of pain, unsteady on my feet) or if there is another reason.  When I had the flu last December, it took months for me to recover; it is plausible that my exhaustion might be left over from the move.

I feel guilty about wasting a beautiful day like today.  But the idea of doing what I need to to do get out there is beyond my capabilities right now.  Good thing Alex is here to drain the dogs.

Georgia-Land

We have made it to Statesboro after visiting with my sister in Kentucky and then a long and gorgeous drive into the South.  I still feel pretty disoriented, but it is getting better.  Little things like getting a library card, Internet access and meeting my new neurologist, Dr. Patel (another transplant, I think) help.

Hazy, hot and humid

It is amazing how fast the seasons changed from cold, rainy and damp to hot and damp.  Living in an unairconditioned house is an endurance test.  Wearing long pants is insane.


I took a long walk yesterday before it got too hot. I have been struggling with wearing shorts and my ankle-foot orthotics. It is humiliating to expose them this way: the alternative would be to stay home or wear long pants.  


While walking, I had an epiphany: I was the one putting limits on me, not my CIDP. My desire to hide my AFOs was restricting my activity level when they are supposed to do the opposite. Wearing them means I can walk almost as fast and almost as far as I used to be able to walk.


What is the matter with me? Like anyone is going to care that I have these things on. 


 Like I care what anyone else may think about me wearing them.


Please feel free to leave your comments below.

Iron Ore

Update:

I saw the neurologist Monday and things are going well. Despite the ever present weakness, fatigue and pain, no CIDP symptoms. I am going to continue reducing my prednisone until it is 5 mg a day. I am going to start tapering off my IVIg-once every two weeks, then once a month and finally, as needed.

They are popping open champagne at my insurance headquarters over that! Last time I checked, my IVIg was over $16,000 a treatment.  I have had around fifty since last March.  

In other news, I am now married to a doctor. Adrienne received her PhD on Saturday. Next week, we will travel to Vermont to visit friends and pick up Mercedes. I can think of little else than seeing her again. There are also the preparations for moving to Statesboro, which will happen early in July. Of course, the house is still unsold.

Online Support

When I got my first diagnosis last spring I began to search the Internet for other people with the same diagnosis.  It was a great opportunity to learn about Google's Blog Search and how to create a Google search.  So now, whenever a blog has CIDP or Chronic Inflammatory Demyelinating Polyneuropathy in it, I get a notification on my homepage.

One of the things I was looking for was an online community to be a part of.  There are a few out there and today I found this one on a blog called Kenny Kellogg, Scott Orn's Personal Blog:

New CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Support Network

Just a quick heads up that Ben's Friends online support networks went live on a newonline support network for CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). We're still populating all the features and rolling it out to patients. A group of patients saw what we were doing on our other networks, and asked for this, so we obliged. :)

Handi-can't

I am done being handi-can't.  
I am driving.  I am walking the monster dog.
As soon as I  get air in my tires, it is time to get the bicycle out.

Take that, CIDP.

Ash Wednesday

After our morning coffee in bed, Adrienne and I went to a local  beach so she could have her morning walk on the beach. There were several groups of people doing their morning exercise routines, some with personal trainers and bright equipment. Most walked or ran across the white sand.

Fat Tuesday

We flew into Naples last Friday night (and boy, were my arms sore!).

Monday's Blahs

I cancelled last Monday's physical therapy appointment because I was not feeling well.  Exhaustion from a busy weekend, four hours a day driving, then whirlwind visiting with my family coupled with only a few hours sleep the night before left me with a couple of painful cold sores and the sniffles.  There is also a buzzing sound in my ears and objects seem to sport a lightly radiating gloriole  around them.

I hope they won't charge  for the missed appointment.  Which askes the question, am I really too ill to go or am I playing hookey?  I feel guilty about choosing to stay home.  In my heart, I should have gone and just been sick.  It will be my fault if I will have to pay for this out of my own pocket.  I should never have gotten sick.  It is my own fault.  I should have...

My Gratitude List

I have been feeling a little gunky emotionally lately.  New tough time of year, I guess.  I have been so busy thinking about what happened last year that I am scaring myself.

People used to comment on how, during the worst of it,  I was keeping my spirits up, that I had an optimistic attitude, and I was relying on God to see me though the bad days and bad moments.  To my thinking that was because I was making the choices to do those things.  I didn't want to get lost in fear and despair.  It was like a big hole in the road that I could either go into or go around.

On Anniversaries

 I still have no idea how to understand this change. I still cannot properly describe what it means to have been a person who knew she could do anything and to discover she can do so little. But right now that doesn't matter. I am still alive. -Missy Y. (formerly A Case of You)


My first anniversary of the onset of my chronic inflammatory demyelinating polyneuropathy is just days away and I am all abuzz with excitement.  The symptoms appeared at the beginning of March, but I went into the hospital on March 19th; I am not sure which date will earn the badge of being the most significant.  That is not quite sarcasm.  Perhaps June First would be a better date; that is when Dr. Boughaba correctly diagnosed my chronic inflammatory demyelinating polyneuropathy (and the date I began to improve). I don't really believe that the actual dates mean anything.  They are more like convenient markers that can measure the distance I am getting away from the horrid events of 2010.

I can dish it out, but can I take it if I dish it out to myself?

Thursday, February 17, 2011 

I am preparing to recognize a milestone-my symptoms first appeared early in March, 2010. Whether I am going to celebrate or curse remains to be seen.
It depends on my perspective on the events of the last twelve months. A year ago I was healthy, employed, and looking forward to vacationing with my wife; two months later I was paralyzed and totally dependent on other people for everything.

Sunshine and Unicorns

Today is more than just a good day; the weather has been kind, permitting me to go about outside in the (semi) warm air and sunshine.  Plus, I have more energy than I've had in a long time. It is a great day. 

I picked up my ankle-foot orthotics yesterday.  I am still a little uncomfortable with them, but I know that is just until I get used to them.  They have been very helpful.  I had them on for about two hours today while I went grocery shopping and I was amazed at how much of a difference they make.

There was more that I wanted to share, but I am tired, so it is off to Napland.

Did you get a flu shot before you CIDP or GBS? Spotlight: Flu Vaccines and Neurological Problems | Philosophers stone

I haven't had a chance to completely check if this is one person's opinion or if there are any facts connected to it.  I am posting it now to start a conversation.

Durring my hospitalization,  I heard doctors and nurses talk about how rare it was to see so many people with GBS.  My mind went back to the previous summer's influenza vaccination frenzy.  I don't usually get flu shots, but did in Fall of 2009.

Spotlight: Flu Vaccines and Neurological Problems | Philosophers stone