Strive to Keep your Illness from Stopping you

That's right!  I have had a rough few years. I had surgeries, amputations, lost my spleen, became legally blind, almost died, broke my leg for no reason just before last Christmas, and by the grace of God, I've been able to do the following.

This breif rundown of my issues doesn't do my situation justice; not by a long shot.

If I was able to bounce back after all those setbacks, you can surely bounce back yourself.  All you have to do is refuse to give up.   

New Diagnal Exercise Video

If you are hospitalized and feel up to exercising, and if your doctor says it's okay,  try this diagnal exercise.

If you are obese and have  too much weight to walk comfortably and want to start getting in shape, give these diagnals a try.

This is a video of me trying to explain how to do them.  They might look easy, but by the time you are done with one series you'll know this is serious stuff.

My Doctor (Diagnostic) Team

It is an exaggeration to say my doctors are members of a team... of a “doctor team” focused on finding me a diagnosis.


That said, I have seen many different specialists in the search for  that diagnosis,  but  where did I start?


I started with a primary care doctor who had me tested for all the common conditions that cause my symptoms. After she exhausted her knowledge/skill level, she sent me to a Gastroenterologist (G.I.) specialist.


He literally had me scoped up one side and down the other, had biopsies taken, cut my abdomen open to look at my bowels, and a number of other studies that revealed … “nothing remarkable“.


Next, I was referred to a Rheumatologist (auto-immune specialist). Dr. Sanders has (unofficially) assumed the role of de facto primary care in my mind because since introduced to her, she’s seemed to take a personal interest in my case.


Dr. Sanders had me tested for a variety of autoimmune diagnosis, but has been unable to find one that fits my situation.


She referred me to a Geneticist who examined me looking for any physical or family history of any other condition that might have protein losing symptoms. He too was unsuccessful.


Although not referred to look for my diagnosis, I did see a few other doctor types for secondary issues. I saw a doctor who specialized in communicable diseases, and I saw a neurologist. Additionally, I’ve had broken bones, legal blindness, pulmonary distressing conditions, and cardiology tests; all of which required different doctor types.


All of my doctor’s except the very first one; the one that discovered my protein was low, was a general public practitioner. All the others were, or are, veteran’s administration doctors.


I called one of my doctor’s today and asked about non-veterans with my condition getting diagnosed. I asked for her advice to people trying to get a diagnosis.


She said, primary care not withstanding, her recommendation is to start with a Gastroenterologist. She also said that VA doctor’s aren’t normally as aggressive as civilian doctors so someone seeing a G.I. doctor outside the VA might have better results finding a diagnosis.


I’m writing this because I was recently asked if I knew a doctor who might be able to make a diagnosis in a case much like mine. I wish I could. And, it’s from this desire, that this post is generated.

Why Is Getting A Rare Disease Diagnosis So Difficult?

The following is an excerpt from about .com. Recently I was asked if I could recommend a doctor for someone. This prompted me to start looking.  I did go to the Mayo Clinic in Rochester, MN in 2007. 

I saw a specialist there who ordered some tests which indicated "Menetriers" disease.  The VA unsuccessfully tried to verify this diagnosis.

I had a upper-GI (EGD) endogastric duodenoscopy, as well as a few other tests.  I can't remember that doctor's name.

I came across the following article that I think explains some difficulties we have when trying to get a diagnosis.

It can be a long, frustrating process
From
Updated August 21, 2009
About.com Health's Disease and Condition content is reviewed by their

You have been waiting forever to see a specialist
It’s difficult to get an appointment with some doctors, most of all those who specialize in rare diseases. It may be 3 to 6 months before you can see someone who has a heavy schedule. It can be disappointing to wait a long time only to be told that they’re not sure what you have or that they want you to go see another specialist.

Telling your story was easy the first 50 timesI know a mother of a child with a rare disease who has typed up some pages explaining what her daughter’s disease is, her medical and surgical history and her current medications. The mother hands copies of these pages to each new doctor who examines her daughter so she won’t have to repeat everything yet again. You may feel as frustrated as she does, having to give the same information many times. It may seem as if the doctors don’t read your chart or look at your test results. Seeing new doctors adds to the stress of getting a diagnosis.

CLICK HERE FOR FULL ARTICLE!!! It is very good.Mary Kugler, R.N., former About.com GuideMedical Review Board

Is the Albumin Infusion Safety Question put to Rest for Chronically ill?

In the following video, the speakers refer to the use of Albumin infusions as related to ICU patient recovery... using Albumin in place of normal saline.


I'm curious about the longterm effects as a treatment for chronic hypoalbuminemia.


Forwarding myself as a study subject, so far, I have not noticed any adverse side effects. Here is the video mentioned:

Coming to Terms with my Chronic Illness Allowed me to Live Again

My head was spinning when the doctor informed me about my condition, and although I heard her, it took quite some time before I actually believed her. I didn’t want to believe her.


So, I wasted lots of time holding onto the belief that a mistake must have been made, that somehow I was exempt from chronic physical illnesses and I would prove it to everyone.

That was me not coming to terms with my illness. That was me who vented my frustrations at my wife as my life began to change.


I felt like I was transitioning from an independent, productive, working man to a dependent, disabled, burden, and I was afraid.


So, after a couple years of feeling this anger and fear, I began to realize that I may as well be dead. I mean I wasn’t doing anything to make my life better, and I decided to do something about it.


I accepted my illness for what it is. Yes, I am inconvenienced by it often, and it has caused much pain. Yet I refused to be only a spectator in my own life.


If you allow yourself to be ’only a spectator’ in your own life, you aren’t doing anything to make your life better.

Patient? To be or not to be (Reactions to Hospital Situations)

Being hospitalized in a facility that employs highly educated people, you might think they have answers to every situation that arises.

Let me say that things aren’t always what they seem.


During my last hospital stay, my roommate was restricted from eating anything after midnight due to a procedure he was having the following day.

The morning of his procedure, he was told by his doctor that the procedure was cancelled, so he could go ahead and eat.


He was happy because he could eat, then another doctor cam in and told him they were ready to take him to his procedure. A few minutes after explaining what the first doctor said resulted in a nurse telling him to just wait till the doctor put something in the computer.


You see, at the VA hospital the nurses do not do anything (even if it is the right thing to do) if it is not in the computer.


Sometimes I think I could have a gushing head wound and the nurse would have to check the computer before covering it with something.


When these types of situations arise, I personally feel like it’s perfectly okay to be impatient., though I refrain from displaying my angst.


Another situation I encountered during this past hospitalization had to do with my other roommate who wasn’t eating much.


I became hospitalized on Tuesday. My other roommate was there already, and he didn’t have much functional movement, although he was able to speak.


The first night the man’s food was brought to him and the CAN helped him eat. The next 3 days, each meal was brought, but the guy didn’t get any help eating.


Each of those 3 days the food service guy would come back to get the tray, he’d ask, “Did you have enough?” to which the man would say yes.

 Why A nurse  didn’t come in and help him eat is unclear to me.  That said, this is another instance when being patient was a stretch for me.


Another situation when being patient was difficult was when the nursing assistan  would not listen to me concerning morning weight checks. The doctor ordered them to track my diuresis accurately. That said, the beds the VA has have built-in scales that are seldom correct.


I told the CAN I had to have accurate weight measurments, that the bed scares were inaccurate, and I would be more comfortable with the portable scale I had to stand on. She actually argued with me, and requested that I lay on the bed anyway. I did as she asked, then told her, “That weight is not right. Get the stand-up scale”. She eventually retrieved it, and there was a 6 pound difference.


As you can see from my examples, sometimes there is plenty of reason not to be patient, but it’s of no use to allow these issues to overshadow the help the hospital provides.


In my case, the hospital staff did meet the goal of my fluid loss, and I went home feeling much better.


The guy who was going to have that procedure eventually got to feeling better and he was discharged the same day as me.


The guy who wasn’t helped with his meals was finally taken care of after I mentioned the situation to a nurse.


When each of the issues are addressed with compassion and a genuine desire to provide good care, being patient is much easier.