light bulb..

I love how some days I feel completely fogged over and other days my mind is as crisp as a fresh fall apple!! Today is a crisp day!! I am sprung with numerous ideas and thoughts that are actually conceivable!! I mean this stuff totally motivates me!! Gotta say its a good day!

I must begin work on some of my 'plans' :)

Dropping in on frustration..

So, I sometimes feel like the world is spinning and everyone is moving but me. I feel like that time goes fast and I stand still. Ever have that feeling? I think I am completely losing it. :) Well not really I suppose, however I keep seeing in slow motions things happening to me that I tend to not realize is my reality. For example, I was preparing myself a protein shake about a week ago and put the lid on it and went to put it away when the lid slipped off and bamm! protein powder everywhere!!! I mean I saw it all happen like out of body. My MD so graciously fooled me into thinking that I had tightened the lid and then the slickness of the container slid right out of my hands. You see this is not just a weird scenario, this is my life whether I approve or not. More and more things are affecting my daily routine, I even have pain from writing or typing too much because my hands ache and are cramped up for hours afterwards. Strangely enough, I have yet to find another person with EDS and MD - Charcot Marie Tooth Disease. Finding 1 person in this world of 7 billion who can understand me would be worth more than a lot of people think!

I have a word of advice for any parent or grandparent out there. Whatever your case may be, whether you are healthy are constantly sick, please document ANY and I mean ANY thing that may have caused a death in the family or even illness!! I thought I knew everything about my family even after I talked to my living grandparents!!! Unfortunately, some things were forgotten and names were not documented and when I did find out more and more about my relatives and how much I had in common with them it was too late. Meaning most of my relatives had passed and anyone that could relate to me was no longer there to talk to. We have to keep the lines of communication open to our children and grandchildren!! I am not saying that knowing some things ahead of time would have prevented any of my diagnosis, but being able to talk to someone related to me who could give me positive advice would have been priceless!!!!

So please document illnesses or any other diseases!! :)

Thought for the day;

Control your thoughts; they may break into words at any time.

yo

Well did my first yoga class this morning. I was very nervous! I had a really great support system from my friends and family and once I got going into the class everything seemed to fall into place.

I don't really have much more to write. I think I may try to aim this blog towards healthy alternatives when you bake, cook or maybe even reasons to take certain vitamins. I need to give it a little more thought though.....

then there are those days;

So some days I want to do a lot and feel really good about it, but as I am busy accomplishing my many tasks I began to realize my joints are hurting and weakness is setting in. This isn't a feeling you can ignore and like a tornado it comes on quick and damage can be felt even quicker. No permanent damage [usually] occurs however for the next 12 hours I will feel good about everything I have gotten done but angry at the fact I can now barely move my joints.
The wonderous joys of EDS is that the ligaments are weak and not stable so even though I can still work out
 and get errands ran and cleaning accomplished; the fatigue of muscles kicks in quite quickly. Then the MD causes tingling and sometimes burning sensations thru my hands and feet. Similar to having a limb fall asleep and then begin to wake up that is what I go thru almost daily.

We cannot control what happens to us; but we can control how we react to it.

misc and more....

Well a group of us ladies went to a women's conference in Fort Wayne. It was quite moving, entertaining, emotional and left an imprint on my heart. The women there have gone so much and have made a complete turn around in their lives by staying close or coming close to God. Anyway, we had a fabulous time and a quote I left the conference with was 'The messiah can take any mess and turn it into glorious message.' :)

When things in my every day life happen I think 'man I need to blog that' and I have it all written out in my head...until I get the time to type it. It doesn't work out quite Like I want it to. Maybe its the emotional state I am in when the event or thing occurs or maybe its just looking back and realizing it wasn't as important as I thought it was. For example, this morning while getting ready for church I dropped my bottle of facial lotion. Not necessarily a big deal to a normal person, but to a person with Muscular Dystrophy - CMT it is a multi daily occurrence that drives me nuts and reminds me of what I have. I HATE to complain and even worse I hate what MD does to me. The trouble I face even down to trying to button my daugthers' shirts/pants or putting a necklace on myself is enough to make ANY person extrememly frustrated. Anyway, positive thoughts right?? Thats what gets me by...

vent....

This is short entry but I had to vent. I went to what is called Midwest Mania in Chicago on Wednesday evening. Basically its a weekend long event that offers almost any fitness certification you could possibly imagine. I was going to get certified in Yoga.
So we arrived at the hotel Wednesday night [I went with the owner of the gym I work at and some wonderful other instructors]. Anyway it was late so we opted to eat at the hotel restaurant. No big deal, I ordered a salad with chicken. The chicken breast was huge and they only split it in three which were still to big to eat alone. So I started to cut the chicken, however there was a problem. The knife and fork were so heavy and with the motion of cutting the chicken I failed miserably. You don't know your limitations until you are brought to almost tears from a knife and fork. I don't know why they had to make those utensils so heavy [no one else obviously had a problem] and I could not bear to mention my dilemma I just acted like I was cutting it. I guess between the EDS and the MD I have lost more control that I actually have admitted, although this will not define who I am! Okay that's all for now I had to vent somewhere without judgement or pity.

where to begin, when the begining just began

Starting a new way of living and thinking after 34 years was one of the hardest things that I have yet to accomplish. Let me back up...

I was born thru a normal delivery [my mom may argue with that statement :) ] never the less I was born March 13, 1977 at 9 lbs. 5 oz. I grew up with parents that separated and divorced around the time I was 1. Both remarried and both got divorced again. Both parents are remarried and both are active in my life.

Early on I knew I was different from my double jointedness to my strangely bony toes and high arched feet. I grew up with hyper extending limbs a lot, sublaxing and twisting of ankles frequently with no knowledge that all of this could and would eventually rotate back to a disease I knew nothing about. After graduating from high school I had more and more problems with hips 'dislocating' and unexplainable pain in other areas. I saw multiple chiropractors and even a orthopedic surgeon about why I was having on going hip problems at an early age. Inconclusive as always.

After the birth of my son when I was 21 I had a prolapse uterus which is basically my uterus decided it didn't want to stay and tried to break free when I delivered my son. :) Weird yes, reasoning from doctor no.
Moving on, more hip pain and knee pain as my son got older I began working out which seemed to alleviate the pain for a short time. However, again the pain always returned with no explanation. The pregnancy of my daughter did bring some worries however I delivered her free and clear of any issues. I began working out again and this time more intensely.

[moving forward quickly to avoid pain and bored ism on your part]
The change of workout plans this year brought quick change in my body along with a lot of discomfort that finally led me to get a second set of x-rays on my hips and a ANA blood test. Of course all of these tests came back as 'fine and normal'. I was told to take Tylenol...*sigh*

Advancements in technology has really made it easier for people to find reasoning to what could be causing issues within the body. Technology is also amazing enough that people out there experiences the same 'symptoms' that can relate to what you may be going thru!

So I went home, googled my symptoms [this did take a while and a little tweaking] to finally find potentially what was wrong with me!

Ehlers - Danlos Syndrome or EDS. Something I have never heard of and honestly didn't figure I had. But I made an appointment with a geneticist and a month and a half later received the official diagnosis. WOW. That is all I could say. The geneticist was also concerned about my bony toes, high arched feet and family history of muscular dystrophy type Charcot Marie Tooth disease. So I made a neurology appointment for a month after that. And I left with a diagnosis of CMT [Charcot Marie Tooth]. After leaving the geneticist office I read everything I could on EDS and so many things began falling into place! After leaving the neurologist I was confused and felt things had just gotten extremely complicated.

This is all a shortened version of my life to this point. I know things could be 100 times worse, however this is my reality. I have grieved, been angry, felt sorry for myself and now have finally reached the 'okay' point. Day to day, hour to hour and even minute to minute.

I still work out almost daily, however it is all tweaked to fit my body. I worked out today and feeling like my feet weighed a ton and I could barely move them thanks to CMT I felt alone and boxed in. I felt like nobody in this world understands what I am going thru.

I find people who have EDS but not Muscular dystrophy or people with Muscular dystrophy but not EDS.
I go numb in my feet and achy in my finger joints. My stomach has two hernias from surgery last year that need repaired. My daily pain changes daily. My ligaments grind when I workout. My attitude changes in the blink of a second. My mind wonders if I would be better off without knowing. My limbs are weak. My neck hurts some days so bad it hurts to smile. My balance is worse than a 80 year old. I hate complaining and know that although family has good intentions and want to support me....I know they don't understand and I am OK with that. I love them all.

Well off to a finally kid football game...