Presenter: Nadiya Destiny

Group: Agape Learning

http://agapelearning.net

My Story

Tired all the time Diagnosis Treatments Facts About CFS Question and Answers

Who I Am Jennifer Kraft 29 years old Former special

educator Former Education

Technology Facilitator

Business Owner CFS Sufferer

Beginnings of My Disease Not sure when it started Signs point to massive dosages of

PrednisoneAt one point, between 6 and 9

Hydrocortizone shots in one yearConsistently off and on Prednisone, then on

highest dosage for 6 – 9 months Put on 90 pounds of stubborn weight

Life Pre-CFS

During the three years post-college graduation, IWas involved with three church choirsWorked with the youth at my churchHeld a second jobTook classes to get my Master’s DegreeParticipated in several community service

projects

Slow Down

Eventually, IQuit my second job – blamed it on classes

and churchQuit the bell choir – blamed it on classesStarted arriving later and later too work

○ Was disciplined for itStarted arriving late for all my activitiesSlept as soon as I got home until I had to

leave again – blamed teaching pre-k

New Job – Starting Fresh

I blamed a poor work environment and burn-out and got a new job.

Completed my Master’s Program Accepted a position in Baltimore as an

Education Technology Facilitator at a High School for Children with Special Needs – a job I loved and miss!

Started Out Well Good for the first

year I started getting tired

at the end of the first year, but blamed it on a bug that I got and couldn’t get rid of.

Youth Gathering

Attended ELCA Youth Gathering in Texas July 2006Slept A LOT

○ Blamed the heat○ Blamed the volunteer positions I had

Help line 4-12 midnight first weekBus Greeter 5 – 10 am second week

It was all downhill after this event.

Occupational Therapy Conference At the end of September 2006 Traveled to Kentucky for a weekend I missed my first flight My co-presenter was sick and we

shared a room When I returned I was sick

Coaching Volleyball Coached volleyball

at my school If I worked out with

the kids before a game the next day I wouldn’t be able to wake up to get to work on time

Final Straws Trip to the Credit Union

Campus of Johns Hopkins UniversitySteps+ Warm Day+ Half-way Across

campus = Inability to wake up next morning until 1 pm

Approached by bossMy concerned boss brought me in because

she was concerned○ Wasn’t arriving on time○ Work was slipping

Doctor Appointments

PsychiatristYou are doing well…nothing mentally wrong

Social WorkerYou are doing well…nothing mentally wrong

DoctorPoked and prodded for everything2nd Sleep Test – turned out better than the

1st

Blamed my weight

Golden Girls Diagnosis came when watching a Golden

Girls episode Dorothy is “Sick and Tired” and visits all

sorts of doctor’s Was told she was crazy Then finally given the CFS diagnosis Had seen it a number of times and

disregarded One time while home sick watched it and it

sunk in

Golden Girls Episode Synopses 1. Sick and Tired Part 1 :

Dorothy begins to feel rather sick for no apparent reason. She visits numerous doctors who treat her as though she is crazy since they are unable to diagnose her malady. Simultaneously, Blanche begins to write a romance novel.

2. Sick and Tired Part 2 : Finally, Dorothy is able to locate a doctor who is sympathetic to her problem. He explains to her that she does, in actuality have a malady entitled Chronic Fatigue Syndrome, that has just been discovered. Later, when the girls are at a restaurant, Dorothy encounters one of her previous doctors and embarrasses him in front of the entire restaurant when she delivers her sermon against the conceit and unwillingness of some doctors to believe their patients when they are truly ill.

This is Me!

Researched CFS on the Internet Read numerous sites Discovered that the list of symptoms

matched me Relieved and scared

8 Primary Symptoms of CFS cognitive dysfunction, including impaired memory or

concentration postexertional malaise lasting more than 24 hours

(exhaustion and increased symptoms) following physical or mental exercise

unrefreshing sleep joint pain (without redness or swelling) persistent muscle pain headaches of a new type or severity tender cervical or axillary lymph nodes sore throat

Source - http://www.cdc.gov/cfs/cfssymptomsHCP.htm

More Symptoms of CFS irritable bowel, abdominal pain, nausea, diarrhea or bloating chills and night sweats brain fog chest pain shortness of breath chronic cough visual disturbances (blurring, sensitivity to light, eye pain or dry eyes) allergies or sensitivities to foods, alcohol, odors, chemicals,

medications or noise difficulty maintaining upright position (orthostatic instability, irregular

heartbeat, dizziness, balance problems or fainting) psychological problems (depression, irritability, mood swings, anxiety,

panic attacks) jaw pain weight loss or gain

Source - http://www.cdc.gov/cfs/cfssymptomsHCP.htm

Strong Statements About CFS The fatigue is “a severe, incapacitating

fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.”

“Function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.”

Source - http://www.cdc.gov/cfs/cfssymptomsHCP.htm

Return to Doctor Agreed to sign off on forms

that I had CFS Didn’t believe it existed

However, CDC had just launched a campaign to make people aware of CFS.

PSA

Happy New Year! New Year’s Eve 2006

Went to sleep at 5 pmMissed the ball

Attempted to go back to work on Jan. 2nd

Went in two hours late Decided to use my

FMLA leave and recoup

Acupuncture

Began seeing an acupuncturist Best thing I did! She immediately said she could help

Opposite doctor I had been seeing

Began to make sense of thingsSomething in Lungs = Skin Problem that led

to the Prednisone that causes Adrenal Fatigue

WOW! Did I feel great!

Will Take Time

After the diagnosis, visited Psychiatrist – You’ll get well but it will take

timeSocial Worker – You’ll get better but it will

take timeAcupuncturist – We can get you better, but it

will take timeNew medical practitioner – It will take time,

but you will get there

Major Decision Because no one could tell me how much

time it would take, decisions needed to be made.

I wasn’t being paid under FMLA, just secured my job.

Rent was $800 +. No real support system outside of work. Or…go home and live off of mom and

dad.

Leaving it All Behind

On February 4, 2007, I resigned from my position.

Moved back home. Initially slept 20 hours a day. Eventually 15 hours around March. Then 10 hours in June. In January I found SL (Nadiya isn’t my

first avatar ;) )

Treatments Acupuncture Main CFS

MedicationsCymbaltaTopamaxProvigilLight BoxAmbien CR

Turmoil in December 2007 Brain fog rules my life, even today Paying bills was hard financially and

remembering where I put them and when they were due

Lost my health insuranceVisited the ERCouldn’t afford prescriptionsQuit taking all my prescriptions

Did get new insurance…but damage was done

Life Today

Still recoveringSome days are bad because I over-do itGetting sick knocks me back

See a Chiropractor that practices Applied KinesiologyTake a Multi-vitaminOther supplement varies from visit to visit

depending on what he finds

Work

Was following my goals and achieving them until I hit the brick wall (CFS)

Currently starting a business that will let me work at my own pace

Substitute Teach at local school district Part-time position as an International

Coordinator with Aspect Foundation Choir Director at local church

The Positives I slowed down a lot Learning to say “No” I stop and smell the

roses. Notice the little

things more.

Facts About CFS No test for CFS Disease of exclusion

You get tested and when everything is normal – you can be found to have CFS

Can look like other diseases – get tested for them all to be sure

No known cause No known cure Treatments will vary from person to person

Final Thoughts If you think there is something wrong, there

probably is. If one doctor cant help you, go to another

one. Try different treatments – there is no one

miracle pill or treatment – find the one or blend that works for you.

It’s possible to live with CFS, just do what you can, when you can.

Don’t over-do it!

CFS Resources

http://www.cdc.gov/cfs/ http://en.wikipedia.org/wiki/

Chronic_fatigue_syndrome http://www.cfids.org/ http://www.mayoclinic.com/health/

chronic-fatigue-syndrome/DS00395 http://www.cfs-news.org/