Chronic Illness - I Refuse to Stop fighting

A tough condition like yours and mine has an anatomy, and I’m not talking about ‘the illness’ in itself. I’m talking about all the aspects of a person that an illness touches.


I wrote this letter to a fellow on television a few years back. I feel compelled to include it on this blog to let you know a little about my illness anatomy.


Here’s the letter: I don’t want to die yet. I have a young spirit! There are things I want to do. I’m not one of those old people who refuse to do things because those things are jouvenile. I love laughing, riding my bike, camping, hiking and I have interests.


I was a brick layer/ block layer as my illness raised it’s ugly head, and I remember my last day on the job when I couldn’t see good enough anymore to lay some soldiers across a lentle at a Corky’s BBQ Resteraunt. While driving home that morning, I could have caused an accident as I skidded through an intersection because I couldn’t tell that it’s light was red until I was only a short distance from it. That was also the last time I’ve driven my car on the streets.


There was a while when I placed 2 donation cans in a local convenience store, we didn’t have money for food, or Christmas, and the usual food bank was out of food because it had already given out its inventory because of the holiday.


We’ve had to file bankruptsy and only have about 2 more years to pay on it. I am getting social security disability, and until recently I had a job as a physical therapy tech. I was having to go to the hospital too much, and my supervisor could see I was trying to work through a lot of pain which I was unsuccessfully trying to hide. They eventually replaced me because of this. I loved the job too because in 2002 I had just about completed COTA certified Occupational therapy assistant college and finally had a chance to feel like I was benefiting others by using a lot of what I learned.

Coping Day to Day with Chronic Illness

I don’t believe anyone can tell you how to cope with your chronic illness. I know I can’t.

I won't.

 What I will do is explain how I cope with mine, and offer some advice.


Let’s be frank. Nobody knows the extent of your physical or emotional pain. Nobody knows how it makes you feel when you are dependent upon others to meet many of your day to day needs. You are not a child after all! Yet, sadly, some of us feel relegated to the status of a dependent child. 

That said, nobody knows your particular emotional state better than you. And,  you are entitled to your feelings. You have every right to be angry, frustrated and insulted when people say, “I know how you feel”, or “stop feeling sorry for yourself.”


Having said this, and keeping in mind that I am afflicted with a chronic illness, it’s how we choose to deal with our feelings that will either help us, or make the situation worse.  It's my firm belief, therefore,  that no matter what our situations are, we can change our outlook by changing our thinking.   

 I chose, for example, to pour my energy into positive activities like writing and engaging in my favorite hobby,  rather than waste my time dwelling on my pain. I have found the more attention I pay to these activities, the less pain I feel.  Conversely, the more I allow my thoughts to center on my pain, the more negative my attitude becomes.


When I volunteered with a physical therapy clinic, I even experienced a spiritually rewarding warmth that I had never felt elsewhere. I would not have experienced this if I had not become afflicted.


So, while I can’t ell you what to do to cope, I can suggest that you get your mind off your problems by immersing yourself in something positive that you enjoy.


If you successfully cope, what are your strategies? Leave a comment below, or in the guestbook.


Thanks.

Deemed Disabled? Now What?

You've been Deemed Disabled, Now What?


Everyone in my life has told me I am disabled.  The government agrees with them and sends me a check every month.


As a result of this determination, and since I can no longer work, drive a car, or do many of the things that previously made me feel good about myself, I have a lot of time on my hands.

I'm sure you've heard the saying, the idle mind (or hands) is the devil's playground, right?  Well, I can attest to this point, but I won't.


I wan't to talk about what I have actually done to fill the new-found void in my life.


I went and got myself a hobby.  I thought about some of the things I've always wanted to do, but never had the time, and I picked one.


I became a ham (amateur) radio opeerator.


How has this helped me?


When I worked as a Brick Mason, my co-workers were my contact (my connection)  with the world outside my home.   That said, the community of hams have since replaced the void that I felt after  I could no longer work.


Amateur radio is more than talking to people over the radio  In fact,  it is club/community events as well that I enjoy immensely.


I'm not necessarily advocating that you should become a ham.  I'm merely suggesting  that you  search your own mind and find something into which you can  immeerse yourself.  Write poetry, build models, write a book, join a book club, play cards,  scrapbook, learn to play an instrument, try out new recipes, the list of possibilities is as varied as people themselves.


As in my situation, the added activity can take your mind off your problems;  if only for moments at a time.


Being disabled doesn't mean your life has ended,  means you might actually be enabled with time to spend on new endeavors.  Taking advantage of  the opportunities that present themselves will keep your mind and hands active.

Update - Albumin & Total Serum Protein is Up! Why?

Considering the fact that I was just in the hospital about 50 days ago, I'm doing remarkably well.

Prior to that hospitalization, my doctor and I decided I'd try a medicine that acted 'like' spironalactone, but didn't have the hypotesterone side effects.

A few weeks after that change, my protein began slipping to a low of .8 for Albumin and 1.1 for total serum protein.

I had anasarca, weighing 194 pounds upon admission to the hospital for diuresis, and was discharged 5 days later weighing 173 pounds.

Sinse that discharge, I've maintained a low edema-weight of about 175 to 180, and I attribute this stability to the resumption of the spironalactone.... and so does my doctor.

Now, If you are interested in my story; my trials and tribulations, its all in this blog.  Use the link list in the sidebar to find a topic.  After clicking, scroll down through titles till you see one that interests you.

I have many articles here related to my contition, and many still related to chronic illness and the medical community as a whole.

Relationships & Chronic illness

If you are like me, you have people in your life who have to go out of their way to help you.

I can't drive a car, for instance, so my wife has to take me anywhere I want to go.

I can't tell you how many times I've wanted to go somewhere but didn't want to have to ask my wife for a ride.

This situation  relegate my relationship with her  to that of a child.  She's the parent, and I'm the child.

Yes, since I've been diagnosed with ideopathic protein losing enteropathy, my relationship with my wife has changed.

I've had sleepless nights due to pain, and while my wife snored away. I was sitting up clutching my foot.

So not to wake her, I'd get out of bed and go get on the couch.  This is how we started us sleeping in separate rooms.

Relationships can (and do) change.  In some ways it's better, and in some ways it aint.

You have to realize your illness is affecting every loved one you come in contact with.  How you approach your illness is usually how others approach you.

Be positive, smile, talk to your loved ones.  Let them know you love and appreciate them.  You may not have much time left, so mend those broken relationships.

High Protein brownie Recipe

If you have hypoproteinemia like me, you might want to try this recipe.


The brownies in this recipe are high in protein, and low in carbohydrates.


They guy uses the recipe in terms of muscle  building, but this could potentially be a positive for folks with low protein.

Update: A couple weeks after my last hospitalization

You can see from the post below this one that I went to the hospital a few weeks ago to get the Albumin replacement.


Since my albumin was less than 1, I stayed for several days getting transfusions.  I also received IV Lasix immediately following each albumin dose.


My current weight is 173.2 pounds.  This is very good since my weight has not increased since I've been home.


This means that my edema has not been increasing.


I have noticed some fluctuation in my energy level, and at times seem to feel bloated.


Upon getting exercise (cutting the grass with a push mower) Sunday,  I have felt energized.


I have been able to do a lot of stuff today (Monday).


Do you think you need albumin replacement?  Tell me about your symptoms.  If you need a sympathetic ear to talk to, sign my guestbook or leave a comment and spill your guts.


Take care.  Remember, God loves you and you will be blessed if you follow Him.