Tuesday, August 06, 2013

Dem Bones

 I know that ya'll are more interested in what's going on around the house and gardens and chickens than these other agendas I may be interested in, so I'll beg your forgiveness today, because I wanted to post this for all the people who suffer from this condition.  Today is the official Klippel-Feil Awareness Day and from what I've experienced since being diagnosed, there really needs to be more attention paid to this disease.  I'm not looking for sympathy or trying to incite other people to become paranoid about their own health but because KF can be so easily diagnosed I just want to share any info I may have in the event it can help even one other person know what is going on with their health.  All it takes is one cervical (neck) X-ray by most any decent orthopedic doctor to diagnose KFS.  Most will then order an MRI to see how extensive the damage is and/ or more X-rays of the rest of the spine.
Now, as with most people, I had no idea KFS existed when I went to my doc.  All I knew was that my symptoms were getting worse as I grew older.  Common symptoms are frequent headaches or outright migraines.  Aching or sharp pains radiating through the neck upwards or down into the back or arms.  Numbness or tingling in the arms and hands.  A mild cough that comes and goes for no apparent reason.  Hearing difficulties and sinus issues; frequent sinus infections etc.  Trouble with vertigo or motion sickness.  Vision problems; blurriness etc.
People with KFS can present a wide variety and amount of symptoms ranging from quite severe to very mild.  Because it is congenital, many people are diagnosed when they are born or still very young.  In these people the KFS is usually in a fairly severe form and evidence of something being wrong can been seen just by looking at the child.  In a great many folks though, including myself, the disease does not present itself until later in life, often times the 40's, and the person usually appears to be perfectly healthy looking.  Because of this one factor many people, including doctors, do not take the adult patient serious and this often just adds to the frustration and isolation one diagnosed with a rare condition often feels.  It's bad enough to live in pain and endure other troubles without having people smirk or scoff at you because you have trouble doing some things.  For example, I have always had trouble with motion sickness, inner ear trouble and my hearing and all my life I have had people ridicule or get plain mad at me because I would always get sick on a boat or an amusement park ride or even in a car.  I finally just quit riding any such thing (except cars!) but then they get mad because you won't do that or feel you are just trying to be a party pooper. 
Now that I actually know what is causing these issues though, it has not helped much in making people understand what's going on.  Most people just blow you off, avoid you or try to ridicule you into "behaving normally".  Now, I understand completely that I have always been a hard worker and active so that may be why some people kinda doubt what I'm saying but things can change for people as they get older.  I have only told a few people in person what is going on with me and from what I've experienced so far I won't be telling many more.  I am trying to spread the word through this blog and other means though, so that some willing people may come to understand the condition, either because they have it or may know someone else with it.
 I also realize I am fortunate to have Jack who understands and does not make me feel bad when there are times that I am having trouble.  I am determined to keep on with this house and my pottery and he helps me by picking up the slack on something I may have trouble with.  I was throwing some new pots yesterday afternoon when my back went out again and I had to get him to put the finished pots away, help me around and get us some supper.  He does it all without complaint and I am grateful for that.  It's very frustrating and scary to lose even a little of your ability to do things for yourself and just a kind word or gesture often means a lot. 

So, I'll leave that subject alone now and ya'll won't have to worry about me yapping about it all the time.
It's raining here again now but we had 2 really nice days over the weekend and in that time my Turk's Cap or Turban lily bloomed for the summer and this year it has 3 blooms!!!  Yay!!!  I was excited.  I hope they last a few days and the rain doesn't beat them to pieces.  I wish I could find some more growing around here but so far no luck with that.  I will keep looking though.


Rita said...

Annie, I think it is so important that you share with us about this disease. These are the kinds of symptoms that are hidden for a while and when they begin to make themselves known in a strong way others don't believe it. It's sad to me that our families & friends lack compassion. You just want them to know what your are going through and it is a hard learning to adjust. Right now my sciatic nerve is driving me nuts and I can hardly walk. You know that only my daughter asks about it. No one else. I will be fine but when that pain strikes I'm not sure I will be. Take care and share whenever you like. Many of us will appreciate knowing how you are and about the symptoms.

HermitJim said...

You know that my thoughts are always with you and Jack.

Just do what you can and don't overdo!

ErinFromIowa said...

I have learned so much from your blog over the years. It surely has been of help to people looking for information on a variety of topics.
The current one I can relate to on many points. I think you and Jack make an excellent team on many levels. Hang in there and take good care of yourselves.
Your lily is a gorgeous specimen!

Anonymous said...

Thanks for sharing and educating us on this syndrome. A lot of folks have health issues where they look fine on the outside but just in agony on the inside and it is painful. I dealt with this and my sister's health last year. Even doctors treat you like you are a psyche case or drug seeker. I hate ignorance. We all need a bit more education.
Hang in there and praying for relief from your pain. Delighted you have Jack to help you out. Pace yourself. :)Tammy in LA

Podunk Paul said...

Annie, your blog means a great deal to me -- it's a glimpse into the life of a wonderful human being. Keep up the good work, as I know you will.

Anonymous said...

Hey Annie, I actually looked up KFS the first time you talked about being diagnosed with it. The symptoms sounded simular to symptoms my sister had been having for years. Turns out she doesn't have KFS, but she does have Chiari Malformation, a condition where your brain protrudes into your spinal canal. Very, very scary. So, thank you for sharing your condition, since she probably wouldn't have gotten the MRI when she did without me pushing for her to get tested. I'd been meaning to email you about all this, so I was glad when I saw this post today! Just wanted to let you know you helped us!
Take care of yourself, Annie, and to hell with what other people think, it's just their ignorence talking. And thank goodness for Jack!


JO said...

It's good that you educate folks on these symptoms. I have CPFD to many Drs. said I had gout because the symptoms are pretty much the same. But the cause is NOT. Mine is a build up of calcium that gets into the joints and crystalizes. Thank heavens I found a really good Dr. and have been going to him now for 15yrs. While there is no cure it does go into remission.

Keep you head up and don't like others have said overdo.

edifice rex said...

Hey Rita! thank you and yes, I know just what you mean; it's sad to me too. I hope your nerve pain goes away quickly!! I know that pain too so you have my utmost sympathy.

Hey Jim! Oh yeah, I know! thanks man!

Hey Erin! thanks! and I'm glad to hear you have learned something from this ol' blog! That means a lot really.

Hey Tammy! thank you! oh, i hate it when the doctors just act like you are a moron or a druggie just because you ask a few questions or whatever. Grrr! Glad I have Jack too!

Hey Paul! That is a very sweet thing to say and I appreciate it very much. I will keep going.

Hey Vonne! Wow!! I'm so glad your sister found out a diagnosis. I hate that she has that problem but I'm glad she knows now and maybe they can help her. I'm also so glad you told me this and let me know I helped somehow. That just means so much to me.

Hey Jo! thanks! and I hate to hear you have that problem but glad you have a good doctor. I have yet to find one that is helpful or even takes it serious but I'm optimistic maybe I can find some help.

Beatrice P. Boyd said...

Thanks for this post, Annie, it has educated me. I am sure you have also helped many others. Not knowing what your problems may be can be just as scary as knowing. Glad that you have such a helpful and understanding partner too in Jack.