Featured Posts

RSS FEED Looking for the RSS feed? Sadly it's currently broken, but I will keep you updated if you join the SuperRachel facebook group (HERE). I am working on repairing the code so the RSS feed works again.

Read more

How to survive those sick days with toddlers... I'm 29 years old and should be in the prime of my life, yet I'm talking about survival. Not survival in the literally sense, but how can I survive those trying days when even the healthiest of parents...

Read more

Dear Doctor ... Dear Doctor I saw today (and several more from the past), Please understand that I am not seeking attention.  I would give anything not to feel this way.  I came looking for your help.  I even set...

Read more

Just ONE . . . http://www.youtube.com/watch?v=9YPH8AuufjU I am ONE A child of God perfectly knit in my mothers womb given an illness, invisible to most but known by Him who sits on the throne   There...

Read more

Finding the Silver Linings . . . In order to have silver linings, there first has to be a storm. As the saying goes, when it rains it storms. Matt and I have definitely our share of storms in 2010. Here's a snapshot of our life in...

Read more

Road Trips with POTS

Posted by rachel | Posted in Uncategorized | Posted on 17-09-2014

0

Traveling with POTS, if done wrong, can result in a POTS crash that ruins the entire trip.  While I can’t eliminate all symptoms, I have found several tips that make road trips much more enjoyable for POTS patients.

  1. Take frequent walk breaks  – When blood is allowed to pool, POTS symptoms flare.  With this in mind, it is vital to take frequent breaks.  Every 90 minutes or so take a walking break.  When you first get out of the car, you will feel very dizzy.  This is because your blood has pooled and you need it to circulate.  Use your friend’s support to walk for about 5 minutes.  You should feel more energetic and less dizzy as the time passes.  If walking short distances is difficult for you on a daily basis, then be sure to do leg lifts or other leg strengthening exercises hourly to keep the blood circulating.  Going to the restroom and back is better than nothing, but not enough to consider it a “walk break.”
  2. Pack lots of snacks and drinks – These snacks aren’t the typical junk food most consume on road trips.  It is important for POTS patients to have frequent small snacks that are high in protein and high in sodium.  The human body works most effectively when fueled approximately every 3 hours.  I have found that because our bodies work much harder to perform even the most basic tasks, we tend to need higher protein intake than most.  The increased sodium intake is recommended for most POTS patients in an attempt to increase the blood volume.  Be sure to check with your doctor.  While most POTS patients benefit from increased sodium, some patients have other health concerns that may not allow a high sodium diet.  It is also easy to dehydrate when traveling.  Intentionally drink plenty of fluids.  Water, Gatorade, and coconut water are all great choices.  Steer clear of caffeinated and carbonated beverages.
  3. Turn your seat into a recliner – It is most important to be properly restrained in your seat.  I remember as a child, I would always prop my feet up on the seat next to me and lay across the bench seat.  Although, this helped me feel better and reduced the pooling in my legs, it would have resulted in horrible results if we were ever in a wreck.  So how do you reduce the pain of sitting upright while staying safely restrained?  I turn my front passenger into a recliner.  I slide it all the way back to allow as much leg room as possible.  Next, I fill the floor board with a large comforter so that my legs can stay extended like in a recliner.  I’m short and have plenty of leg room, but others may need to cross their legs slightly.  Be sure to only use soft things such as pillows and blankets in the floor board in case of a wreck.  During times of my life that I have been dependent on a walker, I would also have to cocoon my upper body in pillows while slightly reclined.  During times like these, the strength of sitting up for 8 hours could even be too much physically.  Of course, always buckle the seat belt before placing your pillows and be sure they don’t limit the functionality of your seat belt.
  4. Plan Accordingly – Even after taking all preventative measures, you are bound to crash the day after traveling.  Plan for it!  The first day in a new location should be devoted to resting and recovering.  If you immediately jump into all of the sight seeing, you will likely have a major crash by the end of the week.  Rest now before your body forces you to rest later.

Many of us travel states away for doctors visits.  I mastered this road trip technique myself while traveling from Texas to Tennessee multiple times in attempts to gain control over my POTS.  Yes, there are POTS doctors in Dallas.  I absolutely adore one.  I’ve worked for him and would send anyone to see him.  I am thankful for the hard work he does and how much he cares for each of his patients. The other, I would and did run far far away from at all costs.

Look for a future post on tips for airplane travel with POTS.

Just ONE POTS patient trying to overcome

Posted by rachel | Posted in Uncategorized | Posted on 12-09-2014

2

What is POTS?

That is such a loaded question.  The actual definition of POTS is a rise in heart rate 30+ bpm  within 10 minutes after standing.  When you talk to someone who knows little to nothing about POTS they may ask you to say the full name (Postural Orthostatic Tachycardia Syndrome).

For those of you without much medical training it literally means its a syndrome where the posture of standing up causes your heart to race.  Sounds simple enough right?  WRONG! It is over simplified.  Yes, my heart rate increases when I stand.  In fact it often triples, but that is the least of my concerns.  I’ve learned how to pace myself, drink plenty of fluids and “deal” with the tachycardia.  The part I can’t handle as easily is all of my other symptoms:

Hot flashes, joint pain and inflammation, hypermobility, numbness in limbs, inability to regulate temperature, delayed nerve function, migraines, blind spots, seeing stars, unequal pupil dilation, shortness of breath, chest pain, skin sensitivity, food intolerance, delayed gastric emptying, constipation, diarrhea, excessive unexplained weight gain/weight loss, tremors, numbness in face, stroke-like symptoms, high and low heart rate and blood pressure, adrenal rushes, excessive thirst, water retention, discoloration of hands and legs, excessive bruising, brittle hair and nails, weakness, chronic fatigue, extreme temperature intolerance, sensitive to smells and chemicals, flushed face,  brain fog/memory loss

Sadly, some doctors hear POTS and assume it is just positional tachycardia.  For this reason, I often report to new doctors that I have a form of Dysautonomia.  Once I know that they are listening to me, I can explain my POTS in it’s entirety. Not all POTS patients have dysautonomia. Personally, dysautonomia is one of my diagnosis.

Please never lie to or mislead your physicians.  It is hard enough to treat our condition when patients are completely honest.

Dysautonomia is a dysfunction of the autonomic nervous system (the ANS controls all of your body functions that you “don’t have to think about”)  While many POTS patients have dysautonomia, not all do. There are also many forms of dysautonomia that are not related to POTS.

Remember that POTS is a syndrome.  It is just an observed set of symptoms.  We have found over 500 possible causes for POTS.  Some are easily fixed by rest, exercise, and/or medication, but others are not.  There has been a lot of promising POTS research lately.  Both the Mayo Clinic and Vanderbilt Autonomic Clinic are great places to look for the latest research.  The most promising research for my particular case is described as the Driscoll Theory.  (I’m sure that will be a post of it’s own in the near future.)  Other possible causes include genetics, Lyme disease, caffeine overdose, and Ehlers-Danlos Syndrome.  Remember there are over 500 different possible causes.

So once you reach a diagnosis of POTS, there are usually two goals from the physician’s stand point.  First, try to manage the symptoms.  There are many successful techniques for this which it yet another post.  The second is to search for possible causes.  This is literally like looking for a needle in a haystack.  Many can be ruled out through urinalysis and blood draws but that often comes back with no results.  If your symptoms are not controlled, don’t give up.  Continue searching for answers.  I have now been symptomatic for 18 years and STILL DO NOT know my actual cause.  We have several possibilities and have ruled many causes out, but we do not know the cause.  If you choose to search for your cause, be assured that it will be a long, hard fight.  That is why I encourage you to not drive yourself crazy looking for answers if your symptoms are easily controlled.

But what about when a friend asks “How you are doing and what do you have again?”  Do you give them the entire story of your illness?  I typically don’t.  I want my friends to know me as Rachel, not that sick girl that is always complaining.  I usually start by saying “I have a chronic condition called POTS.” If they ask “what’s that?” I say, “It’s an autonomic condition where my heart races when I stand up and  anything that your body does that you don’t think about can go wrong in me (like digestion, fine motor control, hormones, etc)”.  Then and only then, if they continue to ask about my health I share the whole story.

Since my full health history is enough to fill a library, I don’t want to burden my friends with every little detail.  There are a few friends that I let know the full story, because it is important for my emotional well being to have someone in whom I can vent all of the illness related frustrations. I want everyone else to see me as being as “normal” as possible.

So, what is POTS?  It’s a recognized syndrome that is finally getting decent research attention, but is still mostly unknown.  It’s a horrible illness that I don’t wish on anyone, but it is MY illness.  I choose to overcome.

30 questions about POTS and ME (A flash back from Invisible Illness Week 2010)

Posted by rachel | Posted in Uncategorized | Posted on 12-09-2014

2

1.The illness I live with is:

Postural Orthostatic Tachycardia Syndrome (POTS).  I’ve also received many other diagnosis, but most simply explain the array of odd symptoms that are related to the POTS.  Example diagnosis include hypermobility, fibromyalgia, chronic fatigue, and irritable bowel.

2. I was diagnosed with it in the year:

1999

3. But I had symptoms since:

I could say since birth (1985), but the severe stuff started in 1996.

4. The biggest adjustment I’ve had to make is:

Realizing that . . . . “I can’t “do it all”. . . “His plans are not my own” . . . and “I’m not superwoman”

5. Most people assume:

I don’t know what they assume.  I think many people (even those close to me) forget my limitations.  They remember me as my good days and get taken back when I have to remind them of a limitation.  I prefer it that way though.  I don’t want to be seen as just this sick person that can’t do anything.  I may have to be more effective with my time and more creative, but I can still accomplish great things.

6. The hardest part about mornings are: 

The pain and dizziness that happens with the first few steps.

7. My favorite medical TV show is: 

Don’t know . . . I like the real ones . . . like the ER shows on TLC.  I get annoyed at medical TV shows where the writers don’t really understand the medical part.

8. A gadget I couldn’t live without is:

My heating pad!  It is always in my bag if I have to spend the night some where, and mom has learned to keep hers handy for me as well.

9. The hardest part about nights are: 

Nights are actually pretty good for me most of the time.  I need more sleep than most, but thankfully have very few sleepless nights.

10. Each day I take __ pills & vitamins. 

Currently “0”!!!!!  This is very rare for me though, and I’m on a pill that I take as needed every other day.  I have taken as many as 185 pills a week though.  I’ve been in a couple research studies and have had to wean off the pills for the studies.  If I hurt with or without them and they only are supposed to treat the symptoms then I try not to take pills unless absolutely needed.  Plus there are no FDA approved drugs for my condition.  All the medications we used are meant for other ailments.

11. Regarding alternative treatments I: 

I salt all my food until I can see it, drink lots of water and salted Gatorade, used to sleep on an 8 inch incline, use medical support hose, and exercise for healing (not vanity).  I’ve also tried some other techniques such as massages, biofeedback, yoga, water therapy, and homeopathic therapy.

12. If I had to choose between an invisible illness or visible I would choose:  

Neither.  I can’t wait to have my perfect body in heaven.  But seriously, my POTS has turned into a visible illness many days as I have large tremors or have to depend on the walker for mobility.  I slightly prefer the “visible” days because I don’t get crazy looks for parking in the handicapped spot.  I get looks of genuine sympathy and concern.  There are less mind games to play when the illness becomes visible.

13. Regarding working and career:

This is probably what I miss the most.  I’ve always been an over achiever, but now I am physically unable to work.  I’m a certified strength and conditioning specialist (the certification most college coaches are required to obtain).  I’ve worked in many areas of health and fitness, but currently can not do it.  There have been times when I’ve been determined to put mind over matter and work despite poor health, but too often it did not end well.  I was often stranded by the side of the road unable to continue driving, or if I got home safely I would have no energy left for myself or my husband.  Despite the financial difficulty and shot to my ego involved, I now stay home.

14. People would be surprised to know: 

That this was the hardest question to answer 🙂  I guess I could say the fact that shocked the doctors the most is not only the severity of my heart rate variability while standing, but the fact that my blood pressure tends to fluctuate even more.  This is very atypical for my condition.

15. The hardest thing to accept about my new reality has been:

That I am not in control.

16. Something I never thought I could do with my illness that I did was:

Stand during my own wedding and enjoy my honeymoon without getting sick.  God blessed me with about 6 months of great health right before, during, and after the wedding.

17. The commercials about my illness:

There are none.  Many doctors don’t even recognize it.

18. Something I really miss doing since I was diagnosed is: 

Since my condition worsened . . . I miss running.  It may sound crazy, but I absolutely loved running.  It was a stress relief, an outlet, a passion, and it is now gone.

19. It was really hard to have to give up:

Working.

20. A new hobby I have taken up since my diagnosis is:

After I had to stop running, I started some light gardening.  I loved it, but now can barely do it.  I’m now trying to get into sewing and similar crafts.

21. If I could have one day of feeling normal again I would:

Catch up on all the things around the house that I wish I could do, but know I can’t.  I’d edge the lawn, weed the flowerbed, deep clean the baseboards, finish the laundry, then go for a long run.

22. My illness has taught me: 

That Christ is in control through ALL situations.  I don’t know how people can live with this without knowing Jesus Christ personally.  He has been my rock and my shelter through all of the pains and heartache.  Matt loves me more than I can fathom and has been force to show the “through tough times and in sickness” love more in the first 4 years of our marriage than either of us ever imagined.  People can be cruel, but it is typically through lack understanding.  Even the most professionals with multiple degrees don’t have all the answers.

23. Want to know a secret? One thing people say that gets under my skin is: 

If I try to politely get out of an obligation without having to tell my life story, it really irritates me to hear “Yeah, that bug is going around . . . “bob” had it last week.”  Really? Do you know me at all?  I think it all boils down to the point that I greatly appreciate my friends, family, and church members that genuinely care about my well-being.  I don’t want or need anyone’s sympathy.  If you don’t really care to know how I’ve been feeling this week, or what the latest news is – DON’T ASK!!!!

24. But I love it when people:

Check in on me with more than casual “How’s it going?”  I love it when I can tell you honestly care.

25. My favorite motto, quote that gets me through tough times is:

Funny, but . . . “Life’s tough and then you die”  I wasn’t placed on this earth to live a perfect life.  Only Christ did that.  I was placed here to grow in Christ and do His work.  My life on earth is meant to have hard times, but when I die I know beyond a shadow of a doubt that I will be standing with Christ in Heaven and all of this will be as a vapor in the wind.

26. When someone is diagnosed I’d like to tell them:

You are not alone.  Call me ANYTIME you need to talk or have a question.  It was about 12 years after I was diagnosed before I met anyone else with POTS.  We are not alone.

27. Something that has surprised me about living with an illness is:

The amount of stuff in this life that really isn’t as important as we once thought it was.  Also, I’ve been amazed by the incredible amount of stuff I can accomplish with only 3 hours of energy on my good days.

28. The nicest thing someone did for me when I wasn’t feeling well was:

 Matt  gave me a “get better or else” gift once.  It wasn’t the gift itself, but the time, energy, and emotion put into it.  Just sitting with me goes a long way too.

29. I’m involved with Invisible Illness Week because:

Lis Copen and Rest Ministries helped me emotionally get through the first several years of battling with POTS.  God spoke to me through the Rest Ministries email devotionals.  I do not despair over this life, and they helped me open my eyes to that reality.

30. The fact that you read this list makes me feel: 

Loved.  I have a purpose, and as much as POTS hurts and slows me down, it is a vital part in that purpose.  Jeremiah 29:11

Crippling fear …

Posted by rachel | Posted in Uncategorized | Posted on 11-09-2014

0

I know that Christ is with me even in the valleys, but it’s hard to accept that comfort.  By God’s design, I am a planner and an organizer.  My closet is even sorted by color and sleeve length.  Even my 2 and a half year old daughter has picked up on several of my idiosyncrasies. My ability to excessively plan and organize my life has allowed me to actually get more done despite my lack of energy from being chronically ill. In the future, I’ll share several of my home management templates.  Yes, I really do have them and use them.  I would be lost without my weekly schedule.  The same attributes that give me the freedom to live life to its fullest can also be my down fall.

The same mind that can manage and organize large tasks with ease can also over analyse the smallest of details.  It is easy to think I need to be in control.  As a result I take the reigns, thus I also unknowingly stop trusting God and His ultimate plan for me.  When one little thing goes wrong, or worse everything in life seems to be caving in, we easily forget to turn to God and trust his plans.  Instead I start thinking through all the what ifs and make contingency plans.  The problem is God holds the future in his hands and knows every hair on our head, yet we don’t even know what tomorrow will bring.  Why would you purposefully take control away from the one that created the heavens and the earth?  Seek God’s wisdom and as hard as it may seem, don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.

The events of the last couple days would make it easy to give into anxiety and fear.  Normal stresses still happen when you are chronically ill. One night, we discovered and tried to repair a electrical fire hazard in our kitchen, investigated a mystery smell coming from my daughters closet, and struggled to keep up with the typical household chores.  All of this was on my Husbands birthday none the less (sorry, Matt!).  The next morning, I woke up in a potsy crash that didn’t improve with my typical helpful measures.  I naturally began to run through all of the what if’s.  “What if this is the end of my health as I know it?” “What if I can no longer care for my children?”.  The list goes on and on …

While it’s only natural to think about the “what if’s”, it is not healthy to dwell on them.  Infact, such stress and anxiety only worsens many chronic conditions including POTS.  Trying to fix everything myself only leads to more anxiety and fear which creates and endless cycle. Instead, trust in God and lean not on your own understandings, In all your ways acknowledge him, and He will direct your paths straight. It is hard to trust God in the darkest of valley’s, but when we do He leads us beside still waters and makes us lay down in green pastures.

How to be a supportive friend to the chronically ill

Posted by rachel | Posted in Uncategorized | Posted on 10-09-2014

7

  1. Create “normal time.”  This is time set aside to talk about everyday things.  You can do or talk about anything from the weather to politics, but no talking about anything medical.  Call it your night of normalcy.  Rent a movie and play a game to escape the reality of life with a chronic illness.  It may be very hard not to talk about anything medical, but make it a fun challenge.
  2. Listen to our venting frustrations.  Be a sounding board and a shoulder to cry on.  As a close friend or family member, it is only natural to try to offer solutions to fix the problems.  Don’t try to fix it!  We have already tried.  We need a moment for an emotional release so we can fight another day.  We will ask for help if we need your advice.  What we need most is for someone to listen and understand.
  3. Do chores or run errands.  We pride ourselves in being able to live as normal a life as possible despite our illness.  This means it takes much more energy to accomplish the smallest tasks.  Most likely, our laundry is piled up, floors need vacuuming, and meals need cooking.  If you ask, we are too prideful to accept help.  Instead find a way you can help anyway.  We might complain to be politically correct, but inside we are overjoyed for the extra help.
  4. Include us in your plans.  We may never RSVP and cancel last minute on you a million times,  Our excuses and inability to commit are extremely frustrating, but it frustrates us even more.  We desperately want to be apart of the “real world” even if that means we have to live vicariously through you.
  5. Go the extra mile.  It could be as little as when my husband bought bite size snickers and cut all of the chocolate off for me.  He knew I loved snickers but couldn’t eat the chocolate. Or it could be more extravagant like the time he bought me a new mobility scooter, walker, and shower chair.  *** Be careful when buying durable medical supplies.  Many of reach a point of physical need for these devices long before we are emotionally ready for them.  If you see the physical need, but they are not emotionally ready it could back fire and cause more harm than good.  In this particular case, I was beyond physically ready for the scooter.  I was sick of making my husband carry me everywhere.  Emotionally, I had come to the realization of the need but could not handle shopping for it myself.
  6. Research our illness, symptoms, doctors, and potential cures as thoroughly as we do.
  7. Diet with them.  If they have been put on a special diet to help with their illness, follow the same diet when you eat together.  It may be hard to cook and eat on such a strict diet, but they have to everyday.
  8. Be careful what you say!!!  Never tell a chronically ill person “I hope you feel better soon” or “yea, that’s going around … my uncle was sick last week”.  It shows how little you actually know.
  9. Find things you can do together.  It will be hard to find things that you can do together but it is worth the effort.  I can’t go to a movie theater without getting sick, but I love watching movies at home with my husband.  We love to play tennis, but I’m often too sick to play.  That hasn’t stopped us from playing seated wii on the couch.  Be creative.
  10. Most importantly, PRAY without ceasing.  Prayers really do work miracles.  I can’t tell you the number of times that someone has been urged to pray for me in my hour of need.  If you don’t know what to say, the Holy Spirit does.

How to be the best patient for those you love.

Posted by rachel | Posted in Uncategorized | Posted on 09-09-2014

1

  1. Share the happy times too. We run to those we love when we are sick or afraid.  Sometimes we forget to share the little victories too.  When I was in college.  I would call my parents during a POTS crash when I was absolutely miserable.  A few days would pass and I would begin to feel better, but my mom would still be worried sick for me.  They are with you during the hard times, they deserve to experience the good times too.
  2. Cut them a break.  My husband can naturally get all the emotional backlash after the extra sick days and horrible doctors appointment.  Its easy to pass blame on them for all of your troubles.  Be careful not to.  They love you and feel helpless in this situation.
  3. Let them help you.  When people ask how they can help, tell them.  They will either be glad to help, or quickly learn not to ask ;). I know it’s not my nature either, but people really are searching for ways to bless you.
  4. Keep great records.  One of my favorite patients brought a brightly colored sheet of paper to each appointment.  On it she had typed out her vital medical history, current medications, current problems, and any major changes since her last visit.  It helped to appointments go so much smoother and I have begun to do that for myself as well.  As a healthcare employee, I greatly appreciated this type of effort.  It should result in better treatment as well.  In addition to that, you need to keep a log of each medical appointment you have, with the dates and billing information.  Medical billing is notorious for errors.  Keep good records to help save your family money.
  5. Brag on your supporters!  We often can’t make it through the day with out their help.  Let them know how much we love them and appreciate them.
  6. Conserve your energy.  One of the hardest decisions I ever made was to stop working on my masters degree as well as to quit work.  I realized that I was giving 100% of my energy to work and school.  By time I got home, I had no energy for the ones I love.  In fact, I had to rely on them to help me finish my day.  Making my family first priority when it comes to my energy is one of the best decisions I’ve ever made.
  7. Find others that suffer like you do.  For the first 13 years of my illness, I was lead to believe that I was alone in my struggles.  My condition is rare.  At the time of my diagnosis, there was only one doctor in Texas and a few world wide that even knew of my condition.  That doctor had a horrible bedside manner which made me feel even more isolated.  After subscribing to Rest Ministry’s Devotional email, God opened my eyes to the vast number of people (many sicker than myself) that are being used for his glory despite their ailments.  Since then, God has allowed me to meet and mentor many people struggling from my exact same illness.  That has been another blessing in itself.
  8. Choose to be happy and overcome.  My dad used to always say “Life’s tough and then you die.”  For those of you thinking WOW THAT’S HARSH, it’s really not.  My dad is a great man of God that loves me very much.  He is also wise enough to know that in life, you will have struggles.  I could choose to dwell on the sorrows of the day or I could choose to be happy and overcome.  God says to “consider the birds of the sky …” and know that he cares for you much more than those.  This life on earth is not our destination.  My home is in heaven with Christ.  He says “in this world, you will have sorrows and tribulation“, yet when I die I will be in heaven with my Lord.  So, yes life on earth is really tough some times, but always remember Christ overcame the world.

RSS FEED

Posted by rachel | Posted in Uncategorized | Posted on 09-09-2014

0

Looking for the RSS feed? Sadly it’s currently broken, but I will keep you updated if you join the SuperRachel facebook group (HERE). I am working on repairing the code so the RSS feed works again.

Just ONE . . .

Posted by rachel | Posted in Uncategorized | Posted on 08-09-2014

3

I am ONE

A child of God

perfectly knit in my mothers womb

given an illness, invisible to most

but known by Him who sits on the throne

 

There is ONE

suffering in silence with doubt all around

seeking answers with none to be found

She aches and she shakes but no one can see

the struggles it takes to make it to tea

 

Be the ONE

that hears our grief and sees our pain

medical ignorance is such a shame

don’t ignore us and just walk away

we envy your health and hear what you say

 

We’re just ONE

of over a hundred mill

not seen, yet chronically ill

This struggle is lonely yet it’s not very rare

We’re half of your town, needing your care

 

It takes ONE

to stop and say hi

Know that we’re human, know that we cry

We have souls, dreams, and goals

but for this illness they’re all put on hold

 

Please be the ONE

that shows us you care

Use the phone, or write a note if you dare

to bring hope to the hopeless

and peace from despair

 

*Special thanks to creative commons for photos used in the video.

10 Signs you found the Perfect Doctor

Posted by rachel | Posted in Uncategorized | Posted on 28-08-2014

0

While I’ve had more than my share of horrible doctors, there are a few that I absolutely love.  I wish all doctors could be as good as these diamonds in the rough!

Attributes of the Perfect Doctor:

  1. They are well staffed and the office is well organized – Even Dr. Perfect needs a great support staff.  An average doctor can seem perfect if he is wise enough to surround himself with a great staff.  On the other hand a Great doctor can receive poor reviews with horrible office staff.  Recently, I went to an understaffed doctor near closing and found the nurse labeling over 60 viles of blood from that morning as they came out of the centrifuge.  How can you trust those test results when the tubes were not properly handled or properly labeled?
  2. They take a thorough health history and do not zone out or place judgments before treating you.
  3. If they don’t know about your condition, they ask for more detail and research it themselves, rather than pretending they really do know.  The pretending usually ends up with the doctor mispronouncing and incorrectly describing the condition multiple times.
  4. They are willing to think outside the box when a patient doesn’t fit the textbook profile.
  5. They are not quick to label with generic diagnosis or call conditions they can’t fix psychiatric.
  6. They practice evidence based medicine and are up to date on the latest research.
  7. After seeing an extra hard case, they actively seek answers.  They study more, consult colleagues, and wake up at night with a new idea to try.
  8. They don’t let their pride get in the way of truly treating the patients that come seeking help.
  9. The listen and partner with the patient to bring health and healing.
  10. They Fear the Lord and Pray over their patients daily.

Dear Doctor …

Posted by rachel | Posted in Uncategorized | Posted on 28-08-2014

0

Dear Doctor I saw today (and several more from the past),

Please understand that I am not seeking attention.  I would give anything not to feel this way.  I came looking for your help.  I even set my standards low, knowing that you would not know my existing diagnosis’s or have any patients like me.  Yet, I still bawled in the car on my way home.  All I asked was for you to listen to me.  Hear my health history and my current complaints, then help me find solutions for my current ailments. You didn’t even take my health history even though I offered it many times.  When I mentioned the latest research about the symptoms I am complaining about, you roll your eyes like I’m trying to be some google-doctor wannabe.

If you took my history as requested, you would have learned that I have been dealing with this particular heath issue much longer than you have been practicing medicine.  You would have also learned that before having kids, I was employed as an exercise physiologist by a cardiologist.  In order to reach this level of employment I had to undergo upper level medical training.  Also, the only way most people get diagnosed with my condition is by fighting for a diagnosis.  We don’t just sit reading web md trying to scare ourselves.  We seek answers ourselves through sources like pubmed and published articles straight out of research facilities.  These self seeking searches only began after doctors have come up empty.

In fact, I’ve not only been a lab rat in research studies, but I have been published in research journals as a healthcare professional.

Don’t get me wrong I love your profession, or what it is meant to be.  But too many of you have forgotten that your job is to help those of us who are sick.  You have forgotten your love for learning.  You have become to wrapped up in your self pride.  You have lost your love for the people of your community.  I forgive you for your short fallings.  Please forgive me for expecting too much from you.  I will continue to fight for my own health.

Please look at some of your colleagues who are adored by their patients and take note of the differences.    These cherished doctors go above and beyond by simply listening, being truthful, and helping us seek answers.  These doctors are very intelligent, but admit that they do not have all the answers.  When they come across a problem to which they do not know the answer, their pride is not struck.  They take it as a personal challenge to find the answers and heal the sick.  They continue to research and study until help is found.  It even wakes them up at night.  They don’t simply slap a diagnosis or prescription on a “problem patient” to make them go away.  Please try to become more like them.

– Your Never Again Patient