Update: Good news on the home front

I have not posted anything in quite a while.   Sometimes I disappoint myself.

 

There is good reason though.  I’ve been working!

 

Hooray!  I’ve been working.

 

My health has improved enough that I had not been hospitalized in a long time so I decided to try my hand at employment again.

 

In 2006 I worked at a physical therapy clinic, and that’s what I’m doing again.  I’m so blessed.

 

I didn’t realize that my blogging experience would come in handy at a PT clinic, but I’ve been able to coach someone, a client of the clinic, to set up and begin a blog.

 

Because of my medical condition giving me so much idle time at home, I was able to become really good at blogging.  This is not the only blog I maintain.  I also have some blogs that you can see linked-to in the sidebar.

 

I’ve been very happy.

 

There is an unfortunate development in my life, though.  My illness, my medical condition had finally taken its toll in my marriage. 

 

Regardless of whose fault it is,  the fact is she’s living with another guy and his teenaged daughters.

 

I think my new  employment and the church I began attending has helped me through a depressing time.  I think  God has helped me too.

 

I’ll leave it here nor now.

 

If you are struggling, just keep digging.  Wherever you are in life, you can make good use of your free time.

 

Maybe you should start a bog.

 

If you want help with this task, leave a comment and I’ll give you some easy  to follow instructions.

UPDATE: Big Life Changes Abound since last Post

For all of you regular readers wondering why it's been so long since I last posted, lets just say my life has encountered some big changes.

I wrote a post several months ago explaining my chronic illness' effect on my marriage.  That issue has grown and I am now separated from my wife.  It's sad because I was just on the verge of another change which would have helped our relationship.  This other thing still came to be and now I am enjoying its benefit as a single man.

The other event is a new job.  I became employed in July at a physical therapy clinic where I work as a therapy aid.  My duties include helping therapists, patients and cleaning.

The clinic's owners are rich in love and faith and endeavor to allow God to use them as vessels for His purpose.

I also began attending a church near my home.  I really like the church and its people.  Our stated mission is to bring hope to the hopeless.

That said, at the clinic, one of our clients is in the process of becoming employed at the clinic as (among other things)  a blogger.  She's actually developed a name for a business and intends to do some great things inspite of being afflicted with Cerebral Palsy.  Here goal with her blog is to inspire and encourage folks with disabilities.

Anyway,  I, along with her speech therapist  recently started  assisting in her effort to set up a blog and I have been  giving her advice on writing (not that I am a great writer).

So you see, I have been quite busy.  

I wrote in a very recent post that blogging was therapeutic for me.  Little did I know my blogging knowledge and experience would eventually be used to help someone else; possibly in the same fashion.

Chronic Illness Blogger's Unexpected Benefit

What to write, what to write?  

It's getting more and more difficult thinking up topics to write about.  I suppose it has something to do with my improving outlook.

My intention here over the past few years had been to inspire as well as inform about my Protein Losing Enteropathy struggle.

My hope has been that visitors might learn something from my experiences.  Furthermore, since this chronic condition has caused me to become legally blind,  I've been able to expand the scope of my writing to include coping with this issue.

As I'm writing this post now, I'm struck by the realization that all the writing I did was therapy for me.  All those posts Id written were in effect therapeutic  journaling. 

If you are dealing with the effects of chronic illness, maybe this is something you should try.  

As I felt overwhelmed with pain and tests and hospital stays, I began writing about my experiences.  I was even able to inject some humor in many of my posts..  (Google, "Hospital Woes Overcome") to get a feel for what I was writing.

After writing such posts, I did feel better.  And, I know there are people out there who will benefit from my writings.  That said, there are people out there who need the encouragement that your thoughts (your words) can give them.

When I look back through this blog, I can't believe how personal many of my thoughts are.  Yet, I'm not ashamed or embarrassed. in any way.

Think about sharing   your  chronic illness struggles with others..  Think about your words and how they might help others.  If you focus on this  goal, you just might discover (as I had) that  you'll be helping yourself.

Amazing Update: Reclast is possible source of Protein Improvement

I expressed my apprehension about being infused with the drug, Reclast.  This drug, taken to increase bone density, also has some complicating side-effects, one of which is osteonecrosis.

If I have to have a tooth extracted after taking this infusion, I might experience my jaw not healing... and possible jaw-bone death!

So, I was extremely hesitant to take this drug and consciously or unconsciously, avoided this for as long as possible.    I finally 'bit the bullet' and got the drug a few weeks ago.

Approximately 3 days later, I noticed my wedding rign was much looser.  It was loose to the point that it fell off into the bottom of the deep-freezer while reaching for something.

So, I weighed myself.  My weight decreased 15 pounds from what it was at the doctor's office.

I also noticed an energy increase.

I called my doctor and informed her of the new changes.  She said that it was "interesting" because Reclast has some T-Cell effects similar to Humera; which seemed to help me for a time.  I had to discontinue Humera because of some negative side effects.

 The bottom line is that for my idiopathic Protein losing enteropathy, one medicine, Reclast, may be helping with two problems.  

I'll let you know how long these positive effects last.

Update - Doing Pretty Well - Protein Stable

I've been doing surprisingly well over the past several months with less severe edema and  low energy.  

I've been able to begin a more serious exercise regimen and have seen an increase in muscle tone as well as an increase in muscle strength and endurance.

At my last doctor appointment  my Albumin and total serum protein were still lower than normal, but higher than they have been in the not too distant past.  If my memory serves me correctly, my albumin was around 1.9 and my total protein was about 3.2.

My Rheumatologist  attributes the stability of my protein  to the drug, Spironolactone, and increased my dose from 25mg to 37.5mg.   I've been taking this new dose for about 2 months now.


I often wonder if my desire to exercise, and my subsequent actions, are related to my protein level.

What psychological (inner speech) is leading me to exercise at this point?

Consciously, I tell myself I need to exercise.  I thought and told myself,  I was looking bad.  I told myself many times, "You need to start working out again."  

So, is it because I have the energy that I began exercising?  Or, is it because I like exercising, or think I really need it.  In other words, If my protein level drops will I begin to stop my exercise program despite my desire to continue?  I don't know if I will have a choice if my protein falls again.

For now, I'm  enjoying my wellness and taking advantage of this up-tick in energy.

Update - Still Kickin' - Protein still Low But Stable

I know it has been a while since I checked in.  Sorry about that.  I have been blogging; getting a little political, and it has taken up much of my time.

That said, I'm taking tome out from political blogging to write this post informing you of my progress and a medication change that was made.

I'm taking Spironalactone (not sure on the spelling I don't have the bottle in front of me).  The medication's stated use is 'a water pill'.  It's adiuretic.  I suppose it does help me to urinate, but the major impact of this drug seems to be how it helped to increase my protein.

Since beginning this drug, I've been able to live my life without frequent hospitalizations.

I foret the dosage, but I'd been taking 1 pill once per day for a long time.  At my doctor appointment, I was told to try increasing my Spironalactone dose by 1/2 a pill.

With just one pill, my albumin has risen from .8 to 19.  My total protein went from 1.1 to about 3.2.
We hope the increased dose will improve my condition even more.

This sounds really good.  I do have my reservations though.  Is it really the spironalactone that's helping me?  I'm not sure.

I started exercising lately.  I've been working my staff most of the summer, but over the past week I've been doing puss-ups and pull-ups.  I cut the grass one day last week and will probably cut it tomorrow, as well.

The point is, when I get enough sleep, I seem to have more energy to do productive things.

Thanks for reading my posts.  God Bless.

No Downside to Exercise

Exercise.  You have to make yourself exercise so you can be stronger and so you will develop stamina.


I know what it's like to want a break, but there are times when we cant leave poor health alone.


Does exercise have to be boring drudgery?  I say, no it does not.


Riding a bicycle, playing in the yard with the dog, gardening, yard work, and hiking are a few things you might try.


Sometimes you can combine activities to create even more interest for yourself.  You could ride your bike to the beach, then hike a little, or go swimming.


You could  walk your kids or grand kids to the park and take pictures.  


If you are wheelchair bound, you can do stuff to keep your body and mind active.


Have you ever thought of painting?   How about writing poetry.  Maybe you could learn a few exercises using items around your home as weights.


You could, for example, use a broom as a bar-bell.  With 2 hands lift the broom over head and down.  Repeat 10 to 20 times.  You could move it side to side, and push it out in front of you parallel to the floor... then bring it back to your chest.


You could use liquid washing powder and 'curl' it.  When we say curl, we mean you'll hold your bottle down at your upper leg with your arm strait... and you'll lift it, bending at your elbow, holding your elbow in a fixed location at your side.  You'll then lower the bottle back down.  You could press it up over head a few times and remember to switch hands and exercise the other arm.


Exercise is good for the mind and body.  While walking or riding your bike, you 'll have time to contemplate problems at home.  You'll have time to organize your thoughts and you gain the energy to deal with issues at home.


In most cases, there is no downside to exercise.  I highly recommend it.