And the Jackass of the Month is ....

Every EDS-er comes across at least one to three doctors in their life time who deserves a 'Jackass of the Month' award. You know them. A doctor pretty good in his field, knows what he is doing in his speciality, but when it seems he or her can't help, understand or acknowledge your EDS, he/she turns into the biggest jackass you have ever encountered! Before my reasoning becomes apparent, I need to give you some background info first.

Almost two years ago to date, my jackass determined that my knee was shot to hell. I had been having problems with my right knee for a while and I could only bend my knee about 5 degrees. Around this time two years ago, I was scheduled for a Total Knee Prosthesis operation. I was to remain in the hospital for about 5-7 days. I went into the operation chamber thinking I was getting a Total Knee Prosthesis, but came out with a Partial Knee Prosthesis! I ended up staying about 3 months in hospital with many problems and when I finally left I was only able to bend my knee about 90 degrees.  Two years later I can bend my knee no further.  I always questioned the doctor why he changed his mind to give me a partial. Our Hate-Love relation had started.  Ronny my husband could not stand him, finding him a big mouth, cocky, egocentric man. I agreed with Ronny but still had respect for his work. I think we all know the kind, a know all, don't judge my work I never do anything wrong and I am a god kind of person.

Well a couple of weeks ago, my knee started swelling up, getting red and I began getting a fever. Walking around became difficult. At first glance, it looked like a possible infection, but my GP and I remained calm and first started doubling the anti-inflammatory meds and icing the knee. I already have a wheelchair for longer distances, but now I needed to use the chair almost all of the time. The pain is awful and knowing that I have high pain levels.  Luckily I was able to see my specialist pretty soon in a week's time.

The Appointment

I was at my appointment on time and arrived before people who had appointments and also arrived after me. Still, it was extremely odd that they were called in first. I had to wait more than an hour to finally receive my turn! It may have been coincidence but the mood was set! It gave me a feeling that the good doc did not want to meet with me.

He still knew who I was and seemed a bit edgy. He asked me what he could do for me. I started to tell him that I indeed have EDS HT with a possible overlap with the Classical, that I have been having a fever, my knee swelling up, like I mentioned above.  I then proceeded to tell him that it felt like something in my knee was moving around (not my kneecap) and felt like I could feel the prostesis move around in my legbone.

'DON'T YOU DARE STICK IT ON MY PROSTHESIS!'

Excuse me, did I say that the prosthesis was broken? Did I blame the doc for making a mistake? NO NO NO NO, I simply said that I felt like something was moving around!!!!!!!!

The doc went further with his very professional attitude:

'What are those crazy things on your fingers, you are not normal he! I have never encountered anything like it in my life and whole career.'

I explained that I was wearing silversplints and their function, while he just rolled his eyes. As expected he send me for some x-rays. Everything appeared normal, like by most EDS-ers.

Back in his office about 45 minutes later, he informed me that I had no reason to blame his work as everything seemed alright at first glance. He examined my knee further and told me that my knee was completely shot and that I need was of a Total Knee Prosthesis. I asked how to go on further, what the next step is.

'You are a problem patient and I will not treat, operate or follow you up any further. I will not do anything anymore except if you need some anti-inflammatory prescription I will write it for you.'

What!!!!!!!! I am not ready to sit in a wheelchair, something has to happen. Maybe an operation is not the right choice, but I can't walk around with a broken busted knee!!!!!!!

Well this zebra has met her Jackass of the month. I may be an empowered patient but this jackass had me stumped, flabbergasted.  How can you refuse to help a patient? Will I shot your good success records to hell? How about your code as physician to help someone in need?

He proceeded:

'I also don't believe that you can have dislocations of your knees or any of your joints! It is not possible to have dislocations so as you tell me. You are nothing but trouble and I will not have you as patient any more!'

How can an intelligent normally good physician make such statements. I can understand if a doctor does not know how to treat an EDS patient, but to treat me the way he did. Are you saying that EDS in my head is, that I am crazy!

JACKASS! is the only thought left in my mind. Not worthy of the doctor title!

Humour makes the Zebra Safari (EDS world) go round!

The last few days were heavy days resulting in a bad night of sleep (read not much sleep!!!), waking up quite groggy this morning! A true BITCH from hell. At least that is how I felt and I must have looked like one as well. Sadly, with a big smile, I have no picture to support the facts.

Luckily, my husband, woke up quite refreshed and good humoured! He helped me look at things and see the funny side of living in a zebra safari.

As I passed him I gave a quick hug and moved on not noticing that he veered backward to lean against me. 'He,' he said, 'I'm not as hyper-mobile as you!' I just helped him catch his balance on time or he would have been horizontal on the floor. That started the banter between us. Before I knew it we were in a stitch about EDS. OK, I realise that the situation may not be funny to you reader, but just imagine the scene in your head like you are watching a comedy on TV and I am sure a smile will appear on your face.

My husband is following a diet to lose a few pounds and I commented that he has no more love handles as I helped prevent a fall. My body, on the other hand, with EDS-HT with an overlap with the Classical, has many bumps and ridges. I'll admit it to you fellow reader, in plain facts, a gross amount of surplus belly skin leftovers from three pregnancies that never came quite right because of EDS. Not a pretty picture, I must add. I commented to my husband that he was nice and tight nothing like my flaps. Bless him as he told me that he loved my little mountains and that they were like rubber he could play with. Little mountains on which he could practice skiing and every day he could change the slope and follow another path. At first glance, my faithful reader, you may think that he meant this as an insult, but if you would have seen his eyes and the loving way he looked at me, you would definitely think otherwise. Dear reader just keep picturing the scene in your head and you will see the grotesque humour of it all. He grapped my tummy and slid the skin from side to side. Just at that moment I lossed my balance and my right leg went sideways with a dislocating knee in the most impossible stand that only an EDS-er can accomplish. Just picture the scene, I losing balance, arms wildly trying to catch my balance, my right hip and leg in a position and my knee bend in the strangest position, like the body of a jumper on the ground but then in mid-air.

Here the giggles came and we lay in a stitch. It was just too funny and too surrealistic like a slapstick. I said yes, I even can change the ski-jump in mid-air. We had tears in our eyes from laughing.

I can think of many such situations. Think about a group of Zebras eating together in a restaurant, all messing up with their food flying through the air while they all have their pinkies in the air like holding a cup of tea. Or the many times, a zebra just falls to the ground tripping over air. Or a zebra that hurts their toe because of an orange. I think any zebra could tell of many funny moments.

  

Or the fact that you strike a pose, like this picture from this morning and your husband says and places on Facebook:

'Ok, ze zit in een jaren twintig mood :-) dat ze maar niet de charleston gaat doen want dan gaat ieder lichaamsdeel een andere kant uit :-D' 

'Okay, she is fased into the twenties :-) She better not do the Charleston because then every body part will go in another direction :D'





You see dear reader, there is a humerous side of EDS, it is just on how you look at the situation. You yourself can choose to laugh or cry. I choose to laugh as it makes my Zebra life much better to cope with and it makes my Zebra Safari go round!

We are "Super women"......NOT!

Last month, I only published one item. There just wasn't time enough in a day to write or I simply did not have the energy to write more. Time has come to write a new article.

VICKY

CHARISSA

My best friend Vicky and I, were always convinced that we belonged to the "fitter" or "better" Ehlers-Danlos patients. We thought that our bodies were able to cope better and do much more than reality has learned us. That we both are worse off has been made clear to us, but more about that later!

The month January was a hectic month for both of us, in our free time as well as in our patient foundation time. The foundation has been inspirational to us, it has given us the feeling that we are can still mean something in this world. We give ourselves with full devotion and are gratefull to have the opportunity to mean something to others and ourselves. We are convinced that things are going in the right direction with the foundation and that together with the whole foundation's team we will start realising our goals.

Last month Vicky and I went to a seminar about eHealth hosted by the EPF (European Patients Forum).

EHealth, in today's technology, is becoming a standard, even if there is still a lot of work to perfect it. It has become apparent that patients will need to play more and more an active role in eHealth. Every patients has the right to know what is written in their medical reports, even the minute details. Even today, this right is not always exercised properly en should a patient get their hands on a report, it will dazzle the patient with all the medical mumble jumble.

The seminar was also more than just eHealth, "Patient Empowerment" is just another example of important topics that was discussed.

Patient Empowerment is a broad concept. Experience through workshops and discussions has taught us that in general the priority is mainly place on our rights. We have the right to read and look into our files, the right for the correct information, the right over our own bodies. We are not saying that it is not like that, but we have also duties: Patient Empowerment also means that we have the duty to learn how to take care of ourselves, taking care in the broader sense, that is. Coming up for our rights is one thing, but performing and doing things in the right and correct manner is another. Being assertive the right way!

We found it an educational seminar, good speakers, workshops and discussion with people from all corners of Europe. Everything was organized very well by EPF, beautiful hotel room, fine food, etc. Vicky and I have enjoyed ourselves, but mostly we learned a lot of new things and were able to broaden our networks.

Yesterday, we had an appointment at University Hospital Ghent for research and testing to show relationship of a dysfunctional autonomic nervous system and Ehlers-Danlos Syndrome type III. With three we were yesterday. Karen, Vicky and myself. We had several tests to do ... Next week we will go back to repeat everything again and then Kelly will be present as well. We are not going to disclose much of our research results, as we do not want to influence other patients that still have to undergo testing. We also want to give Inge the opportunity to present the results as part of her doctorate. At the end of the studies, we will disclose more.

The experience has again been extremely confrontational and we were forced to face the reality on how debilitating EDS could be. In our minds, we still are Super Women, but yesterday made us realise we are NOT!