Personal Costs (Or The Costs of Having to Let Go of Dreams)

At the age of 15-when I was diagnosed with Fibromyalgia- I had dreams of going to Saint Louis University as a pre-med student and then following that up with a stint at Saint Louis University Medical School.  My ultimate goal was to either be a surgeon or an ER doc.

I made it to Saint Louis U and started out as pre-med.  At that time, I really didn't like how managed care was progressing and wanted to be able to help people, but do it without insurance companies dictating my treatment plans, and so I switched to Social Work.  (The irony of this is that I ended up as the "red tape" in a managed care organization-a publicly funded managed care organization-for a number of years.)  But I made a conscious decision to change my major and focus of my education, and while there are definitely times I wished I had stayed the path into medicine, I'm mostly happy with the career path I've chosen.

I want to emphasize that I chose those changes.

I've worked in a variety of fields under the social work umbrella, but my primary focus has been mental health.  I've got experience working with kids and adolescents, adults, families, foster care, adoption, trauma, serious mental illness, and a variety of other areas, but one of my biggest areas of expertise is that of mental health policy.  I worked in Quality Management and Compliance for a number of years, chairing meetings, consulting with county and state personnel, and just generally making a pretty good name for myself throughout the state for my knowledge and participation in the policy arena.  I was one of the best in the field.  I was on track to become a Mental Health Director one day.

But then my health had other ideas in mind.  I went from being a non-stop one woman show (because of the way the county I worked for was structured, I ended up with a lot of oversight responsibility) to barely being able to get out of bed most days in a matter of a couple of years.

Bye-bye dream of being a Mental Health Director.
Bye-bye to being a force to reckon with in the policy arena.
Bye-bye to my good reputation.
Bye-bye to my working full time.
Bye-bye to a solid retirement plan.

Please don't get me wrong.  I love what I am doing now.  I am still in mental health, working as a clinical director, and getting to do a lot of things I really enjoy like training and clinical supervision. I couldn't ask for a better group of people to work with.  But I am not working full time.  (I am also building a private practice.)  And I would have liked to been able to choose this path in a way that didn't damage my reputation or my financial stability.

What other things have these conditions cost me?

I don't have the energy to spend as much time as I'd like with friends and family.
I don't have the energy/lack of pain/hand strength to enjoy being out with my camera as I once did.
I don't have financial security.
Because of the financial changes and the amount of debt, I worry constantly (and the added stress isn't helpful for any of the conditions).
New cars, new clothes, fun trips--those things that many seem to take for granted fall way down the list when it comes to buying things.

And for the people who say things about individuals with invisible illness not wanting to work?  I've generally found those with invisible illness tend to be an overachieving sort of people until our bodies give out on us.

A link to the definitions listed in my medical chart

Suppressed Immune Systems (Or My Body Is So Busy Attacking Itself, My Immune System Can't Fight Things Off)

It's a busy day at work and suddenly, from across the room, someone sneezes. Immediately, my senses go on high alert and my mind goes into Def-com 5 mode, running through the lists of my "avoid illness" supply list at home.  Or I'm spending time with family, and someone coughs a bit, I try not to make it obvious as I avoid being close to them.

And no, I'm not a hypochondriac.

The unfortunate reality is that a common cold or the latest flu virus that makes a "normal person" sick for a few days can knock someone like me out for a few weeks.  The fact is that when someone's immune system is occupied with attacking one's own body, there's not a lot left over to fight off the viruses and bacteria that are out there that makes people sick. And so it means that it doesn't take much exposure to something to make one of us sick and we can get sicker with the bug and for longer than the average.

All this in addition to the pain and fatigue--how did we get so lucky!

I currently have a cold that my husband brought home with him.  As soon as he felt something coming on, we went through the steps.  Zicam for both of us, check!  Healer's Chai Breath Drops for me, check! Halls Vitamin C Drops, check!  He got over it very quickly, in maybe a day and a half.

I'm on day 5 of the cold, and it seems to still be picking up steam.

Chronic Pain Conditions, Autoimmune Conditions, and all that are associated already tend to isolate those individuals dealing with them, but to have to avoid people during cold and flu season?  That tends to just add to the feelings of isolation.  So how does one deal with all of this?  Please note: This is not a substitute for medical advice from your physician. Always seek out a physician for medical advice pertaining to your health circumstances.

Here's a few tips I use to try to stay as healthy as I can:

• Good sleep hygiene
• This means going to bed at the same time and getting up at the same time everyday;
• Minimizing television and other computerized device usage in the evenings before bed; 
• Minimizing caffeine intake in the late afternoon and evening; 
• Minimizing alcohol intake (it can keep people awake and disrupt sleep); and
• Minimizing sugar in the late afternoon and evening.
• Good hand hygiene
• Not sharing utensils or drinks
• Regular light exercise
• Stress Management techniques
• And the utilization of homeopathic/holistic treatments when necessary.  (Please note that I am one of those individuals unable to take the flu vaccine, and the common antiviral medications make me more sick than the virus does typically.)

The fact is that I know I won't be able to avoid getting sick in some instances, and then I rely on water, tea and honey, homeopathic treatments, and good ol' soup (seeking medical attention when the symptoms appear to be more severe or different from what is associated normally with a cold or flu virus).  

And I tell my family to buy stock in Kleenex Tissues.  :)

Definitions of Medical Conditions Listed in My Medical Chart