PFAM ~ Blog Carnival ~ How to get the right people to pay attention.

Patiently Impatient ~  How to Get the Right People to Pay Attention!

 

How do you get your healthcare practitioners to take you seriously and give you the time and attention you need?

 

It has been quite a while since I last shared or hosted a PFAM blog carnival.  I am hoping to get back to sharing a bit more as life continues to evolve.

 

 

Well we are pushing the 9 year mark this year.  Nearly 9 years ago our lives were turned upside down.  The auto accident that I was in where the 90 year old man didn’t pay attention and pulled out in front of me, cost me a lot.

1.  My health
2. 3 Businesses
3. Social Life
4. Dignity
5. Independence
6. Freedom
7. Financial Security
8. Time
9. My husbands health/sanity
10. (Listed below)

Well it cost a lot.  What it hasn’t cost is my marriage.  I still wonder how I got so lucky to find such a great man.  Who has stuck with me through thick and thin, who could have left me at any point during this long road and not been to blame for doing so.

Through this entire process I do find it amazing that the truths I once thought to be a reality, were in fairyland.

I grew up thinking that doctors knew everything, all you needed to do was to tell them what was wrong with you, they would listen and they would believe you and they would give you a diagnosis that would repair you.

I also grew up thinking that life would only get better and better as I got older.  I wasn’t naive to think that it wouldn’t take work but if I worked hard that I would be rewarded with an increasingly better life.

For the first year we listened to the doctors, they kept telling me that I would get better I just took a little longer than others apparently and that I just needed more time, after all there wasn’t really anything wrong with me.

After that first year, I started my journey to a greater awareness of how the “system” works or doesn’t work.  Especially for “Zebras” like me.  (A Zebra is a person with rare conditions, un common differences.)

I began letting my fingers do the walking.  I was in the process of loosing it all, bankruptcy, loosing the car I had earned, loosing my three businesses.. and loosing the idea that my doctors had any clue what to do with me.

I’d been soda free for years, and I had IBS before the accident, and I had been milk and ice cream free for years, other than that nothing was wrong with me before.

What I’ve learned.

Doctors don’t always listen to the patient.  Especially if the patient is a woman.  Sad to say, even women doctors have this issue.  Preconceived ideas settle in and your words just fly right through their perception net.

How I learned to fix this issue.  Have an advocate.  A person who speaks up for you and verifies what you are going through and puts pressure on for a correct solution.  This could be your husband, wife, friend, person on the street… seriously, it just needs to come out of someone else mouth for the information to register.

Now don’t think I am hating on doctors, I am not.  One of our girls is a doctor, but seriously they can’t know it all, and they get overwhelmed with the processes they must legally go through and the problems they have on the day, not to mention the patient or two before them that was difficult or who wouldn’t follow their instructions although the doctor was trying their very best to help them.

Patients can be the problem too.  When you don’t give a good honest try to the therapies or ideas shared for you to do.  You don’t quit smoking, etc..  people keep coming back with the same problem expecting different results even though they weren’t willing to change.

I understand the frustration.  However I am not one of those patients.

If a doctor still does not listen, it is time to find a different doctor.  Or the doctor listens but says, I really don’t know what I can do for you, I understand these are problems, I am just not the right doctor to find the solutions for you.  I respect this doctor.

Most of the time they just become frustrated or angry or give you the same things to do more and more that didn’t work and tune you out.  Then you also know you need to switch.

When you find those great doctors who identify with where you are at and understand or want to understand what can help you, then you should hold on to them.  It doesn’t mean they are the only medical professional that you are going to need but they are going to be a great home base for you.  That relationship is very important.  Don’t be whiny, be strong and be committed to your health.

Even more important than your relationship with your doctor is your commitment to yourself.  If you don’t have this you can’t be upset at anyone else for their lack of commitment to your cause.

1.  Follow every lead or idea you get whether or not it comes from your doctor.  Consider everything!  (Friends of mine ended up figuring out two of the issues I had wrong before the doctor’s came up with the ideas)
2.  Research everything on your own as you are able.  Your care givers can’t do it all.  If you are in a position that you can’t do this then find someone who is willing to do it for you. (believe me.  I am not used to reading all of this medical stuff either.  I am not a book smart person.  But I am capable of learning.)  This has helped me bring to my doctors other ideas that may be beneficial.
3.  You don’t have to agree with every medication or procedure, do your own research and get second or third opinions.

If you aren’t willing to stand up for yourself, you can’t expect anyone else to.  Create within yourself honest expectations.  Caregiving is not easy.  Consider how many ill/disabled friends you had before this.  How often did you stop and see them?  What did you do for them?  Were you concerned with their care?  How involved did you get?

Most people have people drop out of their lives only to never bother to see them again, or find out what happened.   You can’t blame people for this.  Life has a fast pace and you may no longer fit in it.  You’ll need to go through the anger over loosing your life and your friends and all of that sort of stuff.  But soon once you have released all of that, you will find there are a whole different group of friends that you will make.  Often I have found these relationships to be more fulfilling than the one’s I had before.

I was blessed to have been brought up with a desire to still go visit my grandmother when she slowed down, to stop in and spend time with my granddad, and hang out with friends who didn’t have the same abilities as me.  I had friends who I still made time to visit when no one else would.  It is another regret #10.  Not being able to be there for my grandma in her last years.

I can’t be mad at other people for not visiting me.  If they had come by, much of the time early on in those years I was so medicated that I wouldn’t have been much company.  I was blessed to have had a great exchange daughter and others in my life along with Jason during some of those early years.  For most others I fell off the grid and no one really knew why.

These days with social media, isolation is what you want it to be.  If you don’t want to be around anyone you certainly don’t have to be, however if you’d like to keep in touch, that has become much easier.  It might not be in person but it is definitely easier.

Soon, before you know it you’ll have attracted the right people in to your life.  Professional and personal.  There is great value in getting to this point.  Your quality of life will improve, you will be less angry, and happier.  When you can let yourself be happier you will be healthier.  When you are happier more people want to be around you.

These people will also be more supportive when you are going through the rough stuff.

Being a Zebra isn’t all bad.  You may find that you have to dig deep and you may have to give your life all you’ve got.  But there is nothing at all wrong with that.

You’ll soon find that life takes beautiful turns when you’ve been able to accept where you are at, and at that point you can begin to thrive again.  This started happening for me the minute Luka arrived!  Luka also meant that Jason could catch a break.

Luka gave me some independence, and freedom back.  I was safer when Jason would be at work, and when Jason was home he would feel more at ease because Luka was so great at helping me get around.  While Luka has his own issues these days having been diagnosed with a canine form of Lupus, he is still concerned for me.  Hazel does the helping around the house, and if Jason isn’t here, or someone else isn’t here, I just don’t leave the house.

My friend told me about Ehlers Danlos… I saw a geneticist.. and he agreed.

The next important change came after my diagnosis that my bones were slowly falling to bits.  I started a shake and cleanse program that I still am on today.  I was able to start taking less medications as well as having increased energy to deal with the pain.

I began having injections in my cervical spine.  The series of these gave be the ability to sit up once again and hold my head up on its own.

My friend came to visit, she had something called Celiac.  I made food that she could eat… later I realized that this may also be my problem..  Sure enough!

I knew I had a brain injury.. no one believed me for YEARS! until this physical therapist figured out that may be why I was still having so many issues.

Sure enough.  Dr. Nedrow a very special neuro-optometrist, he confirmed this and was able to treat me and my Traumatic Brain Injury (TBI).   Life continues to improve!

Trying the ideas presented, keeping an open mind.  Sometimes it is me who is the one I need to remind to pay attention.  So much of my recovery has depended upon my listening skills and my willingness to be open and aware of what treatment I am getting and what options are.

The last thing I will share is to create a list of all of your issues, symptoms, medical, and personal history and family history.  Put this together along with prescriptions, which doctors diagnosed you with what and when that was.  What other issues even the minute ones are that you have.  Sometimes it is the little things that can help someone recall a treatment or connection.  Include what makes you feel better and what makes you worse.

This should be as brief as possible, while containing as much detail as possible.  Carry this information to every professional that you see.

Be open to change!  Change can be amazing!

 

Blessings,

PinkDoberman

You’ve now read my two cents..  read what the other’s have to say.  Go to this post:  http://hiddencourage.wordpress.com/2013/06/17/pfam-june-2013-getting-the-attention-you-need/  to be connected to them all!  Thanks, Abagail for hosting!

 

[…] Tonja at the Pink Doberman adds her own perspective of living with a traumatic brain injury and getting the help that she […]

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