Regroup

 
Just before Christmas my husband was working long hours and we were expecting two of our out of town children and their spouses and children.  The guest rooms needed to be ready, the gifts had to be wrapped and under the tree.  So, what else does a good mother and grandmother do but take care of it all herself.  Including the heavy lifting and bending to put sheets on beds and so forth.  I spent the entire vacation with immobilizing backpain and couldn't enjoy them like I wanted to do.  Since this was my fourth episode this year of pain that didn't seem to improve with time, I searched out a physiatrist to see if he could tell me what was going on.  He said well let's take a look.  All I hear was "whoa."  Then he said let's go take an xray.  And he said, "Here is the big story of the day."  Guess which picture below best represents my back.

Now, I knew I would be suffering a few setbacks, but really?  Three major ones simultaneously?  I'm tough, but this is going to require something more than tough.

 

I'm not in as much pain presently and am exercising to strengthen my back.  I was just starting to get back to my exercise routine last week when the headache started.  I took some advil and pressed on.  The next day I didn't get out of bed nor did I leave my bed for three more days.  I kept telling myself that I really should get a flu shot, but I hadn't had one in years and couldn't remember the last time I had the flu.  I have learned my lesson.  I will get a flu shot every year for the rest of my life.

Some people still look like a human when they are sick. Like the lady in the above picture.  I'm not so lucky.  I look and feel more like this:

 

 

Today is the first day I have been up and moving for most of the day.  However, because I had no appetite for five days I am feeling extremely weak and tired.  Today was the first day since getting sick that I have eaten a complete meal.

About the third setback I will only speak in generalities.  Sometimes a family member is in need of extraordinary support and everyone drops what they're doing to give support.  I have been in this type of situation as I'm trying to recover from the flu.

I'm still just as committed as I was before.  This doesn't surprise anyone who knows me, I don't back down too easily.  Life is full of setbacks. No setback is worth giving up something that is important to you.  Actually, when all is said and done you feel that you have accomplished something greater than what you set out to do because not only did you accomplish your goal, but you did it in spite of the setbacks.

That which doesn't kill you makes you want to die.

This life is long and short, happy and sad. And none of us leave alive.

I'm feeling a little discouraged today. I am having a hard day with plantars fasciitis. I have already come to terms with the fact that I may have a flair up of sorts on race day. And I do have to keep reminding myself that it isn't about the race itself. It's about the journey. It's about pushing myself to my limits, discovering what those limits are and learning what I am capable of. Unfortunately this journey comes with significant pain. But, you know, if I weren't training for this I'd probably still be feeling the same thing :)

In good news, I really have never felt better. I sleep well, I have not dislocated since yesterday morning! Yea for 36 hours free of subluxing and dislocation! I own and operate my own business making custom window treatments called WIndow Treatments by Melissa.. As I started work today I was overcome with foot pain. I tried so hard to work as I have deadlines Monday at 4 pm. I stood at my work table crying through the foot pain. I tried sitting on a stool to do my hand sewing and the ache still throbbed in my foot.

Basically, there was no way I was going to run today, work today or do anything. When you are sitting and resting with your feet up you have lots of time to yourself and lots of time to talk yourself out of things and focus on the pain. I can think of a thousand reason why I shouldn't run this race. And reason why? Well, there is only a hand full. And yes, the risks of training for and running this race outweigh the benefits by a wide margin. And why on earth would someone put themselves through months of pain just to run for a day and be in more pain?! Because they're loony, right?!

On days like this when I want to talk to the big man upstairs and say, "My body is defective, I'd like to exchange it for a new one," I just need to remind myself of my small handful of reasons for doing this. While I may have only a small number of reasons for doing this and much more reason why not to, the reasons for doing it are so much more important to me than the reasons for not doing it.

Things have always come very easily to me. I had no trouble in school graduating both high school and college with highest honors. I was pregnant my last year of college and was sick every single day. I went to classes anyway. Well, most of them. And I did often end up leaving to run to the bathroom and vomit every 20 minutes or so. But even with missing most of my classes I still graduated with honors. I never once had to pull an all nighter. Finished college in 3 years, etc. I don't say this to gloat, I am just saying that most of my life has been easy with things coming naturally. I have always been a fast learner and excelled in most jobs I have had. I played many musical instruments and have never had to spend time practicing because I look at something and have it figured out in minutes. I started a business from nothing and made it into a fully functional and operating company that employed nine people in a matter of months.

But when it came to excersizing and accomplishing something using my body, things were the opposite. Because of my EDS I have a difficult time doing things that should be natural. Everything is a struggle for me so I often don't do much that requires the use of my body. Because everything else in my life comes so naturally I tend to give up when something is even the slightest bit hard. If I can't get something on the first try I just quit. And that is why seeing this race through to the end is so important for me.

It is a challenge for me to even get out of bed in the morning, truly a herculean effort. Often times I don't even want to try and with a wonderful husband who takes care of the morning routine with my children I find that I often don't try and give in to the pain. So forcing myself to train for this race has put me in so much better shape that I can finally stop giving in and function well enough to take charge of my own life. It has definitely been difficult doing this and discipline has been hard. But I have stuck with it keeping in mind that I am finally, for the first time in my life, going to do something start to finish that is hard, difficult and certainly does not come natural by any means and I am going to do what it takes to do the best possible run that I can even though my mind keeps telling me to stop because I couldn't run 13 miles on the first try.

I want to convey this message to my children. I want them to be able to do hard things in their life and not give up on something just because it is hard.

I'll probably die in the process or have to have a knee or hip replacement :) But this life is either going to be great or it's going to suck, it's going to be long or it's going to be short. It just is what it is. I'm not going to leave it alive. So I'm going to live it! And use it! Use my life to teach others and teach my children! Challenge yourself.

 In finally doing something in my life that is hard and that I will likely fail spectacularly at, I am discovering so much about myself. I honestly think it has made me a better wife and a better mother. To get yourself to go from not being able to get out of bed to running several miles you really have to put your mind in a place of focus. I have been able to apply that focus to my family and my business and my life has been so much better. I feel like instead of gliding along through this easy life that I am actually seeing the mountains in my life that are around me and tackling them to make things that much better rather than just gliding around them. Does that even make sense? I don't know. All I know it that tapping into this other part of myself, this part that has to try and has to focus, I have become a better person, a better contributor to my community and I feel amazing both mentally and physically. And it is this outlook that makes the happy times of life happier and carries me through the sad times. It makes the long periods of life bareable and the short moments in life sweeter.

And that reason alone outweighs my long list of why I shouldn't run this race.

Bite me, Ehlers-Danlos.


M.

Go do something. Even if you might fail spectacularly at it. Just do something.

Dislocating and Sublexing before and after

Happy Monday, Readers!

This morning was a cold and frigid one here in Virginia. It was 26 degrees when I walked my son to the bus stop. I was so cold that I wanted to get back to my house as soon as I could. So I decided to run. When I got back to my house I noticed several things. First, my balance was great! I didn't feel wobbly while I ran. I felt stable and that gave me confidence. I also noticed I was hardly winded when I got back. 

I also wore shoes with heels for the first time in a long time yesterday! I felt very balanced. Unlike my mom, who walks better and feels normal in heels, I feel very unbalanced and disconnected. I think I look to other people like I am walking on stilts.

 I have made a lot of progress since starting my training for this half marathon. I started training mid November and I feel great! I feel like I am in one piece, I feel connected, I feel stable and my dislocations and subluxations are fewer than ever!

So here is what I am doing to train. First, I am building up my strength by doing weight machines. I consulted with my Rheumatologist, who at this point is my primary doctor for my EDS care, and also my physical therapist that I had to see after my daughter was born. Both specifically said to avoid the "leg press machine" as you use your knees to do all the work. And the recommended I avoid all floor excersizes such as lunges. 

So why avoid these excersizes but approve running? Well, they recommended that I do most of my training "off land." So I will be doing a lot of strength training using weights and endurance training on an eliptical and swimming. I will start running "on land" in March. (I do occassionally now, but am avoiding it for now to avoid injury until I have sufficiently strengthened the tissue around my joints an increased my stability). We will reevaluate and adjust my training plan month to month as we go until the race.

For now, I am using the following weight machines to increase my strength: 

Hip Adduction

Hip Abduction

Leg Curl

Leg Extension

Row machines 

For balance I also do some arm stuff too. 

My physical therapist helped me to learn how to excersize the smaller muscles around my ankle and in my feet. You can do this with marbles or even just a wash cloth under your feet. Put a washcloth or marbles on the floor. Pick up the marbles with your toes or scrunch up the wash cloth with your toes. This excersize has helped me feel much more stable in my shoes.

Then for endurance I do the elliptical or swim. This week I am doing eight miles on the elliptical and the goal is to do that in one hour and twenty minutes.

Mind you, I have worked up to this point. I started from nothing. All I did for excersize was chase my little kids around all day (which isn't bad excersize :)).  You too can work up to this point with the proper guidance and avoid injury. You just have to know what your problem areas are and strengthen those.

My problem areas are my hands and my hips. (Because my hands are my biggest problem that is why a Rheumatologist is my primary EDS doctor). My hips are my second worst area. So it is very important that I do the hip focused weight machines.

I have noticed a significant decrease in my subluxes and dislocations. I used to experience the following dislocations in a week:

Hips- daily, dislocating several times a week, subluxing 2-3 times a day at least

Knee- dislocate at least once a week while awake, dislocate 2-3 times a week in my sleep

Wrists- dislocate once a week

Ankles- Sublux 2-3 times daily at least

Shoulders- dislocate several times a week in my sleep

I am going to start recording my dislocations and subluxes to monitor the progress I am making as I strengthen the tissue around my joints through excersize. I can tell you that it is Monday today and where I normally would have experienced at least 3-5 dislocation in a weekend I only had one and it was at church and everyone heard it and it was so emberassing!!! Everyone looked around at each other trying to figure out what that bone shattering sound was. It was kind of funny, but super emberassing. I also did not dislocate once in my sleep at all this entire weekend.

I will be charting my dislocations and sublexes every post at the very top.

Keep reading! I am confident that anyone can do this with the proper guidance.

M.

If The Shoe Fits . . .

I love shoes.  I hyperventilate every time I go to DSW shoe store.  Unfortunately, my feet don't like shoes so much.  Most people with EDS I know have flat feet.  Actually when I'm sitting it looks as though I have a very nice arch in my foot.  However, as soon as I stand up my joints and tendons are not able to withstand the weight and flatten out like a pancake.  I grew up in AZ and we swam a lot during the summers.  When we would get out of the pool I would notice that everyone else left a very different footprint than I did.

 

Everyone else left a print that looked very much like A in the above insert.  My footprint looked very much like D.  My shoes were always uncomfortable.  Thank goodness I could get away with wearing sandals almost year round because they were most comfortable.

 

I love to dress up.  In college I majored in clothing design and textiles.  I love to design and sew clothes.  All us ladies know if your going to wear a beautiful outfit that shoes are an important finishing touch.  So, due to my stubborn nature, I buy shoes that EDSers shouldn't necessarily wear.    When I was teaching school I had to wear "sensible " shoes because I was on my feet all day.  I was very jealous of the other lady teachers who would come in stylish shoes that I could never wear more than five minutes.

 

Now that I'm not working, I only dress up for church, performances, etc.  Now I can wear the shoes I love because I don't walk very much when I go to these places.  Here are some of my favorites:

 

I actually feel I can walk better in heels than I can in flats.  I seem to walk every whichway but straight in flats, not sure why.  Maybe because I use different muscles walking in heels, I tend to walk a little more normal.

These are my comfy shoes I wear when I shop or when I know I'm going to be on my feet awhile.  Again, because I live in a warm climate I can get away with wearing sandals almost year round.

 

Now when it comes to athletic shoes, I have a very different mindset.  I absolutely need something that is not only comfortable, but is extremely supportive.  Most athletic shoes are made for "normal" feet and were never meant to hold up to the needs that EDSers have.  I have gone to athletic shoe stores and have stood in front of the massive display of shoes and my head would begin to spin due to the overwhelming choices.  Where do I even begin?  I can't possibly try them all on.  They claim to have good support, but how do I know until I have worn them awhile?  I have owned Nikes, Brooks and New Balance.  Though they are good shoes, I always found them lacking.  Keep in mind that I also insert my custom make orthotics and had my podiatrist insert a substance called Sculptra into the heel area of my feet for added cushion.  Even with that, these shoes weren't quite what I wanted. 

 

A few months ago I thought I would try a new brand, so I bought these Asics:

 

They felt wonderful from the minute I put them on.  At that time I was walking 3 or 4 times a week and doing some cross training.  They worked beautiful for that.  However, when I began to train for this half marathon I found they weren't quite holding up when I would run.  So, I went back to the store again to stand in front of that overwhelming display.  I told the clerk that I needed a shoe that would give me more support than any other shoe.  I was willing to pay whatever.  He suggested I try these Asics:

 

 



These are the Lady's Gel-Kayano 18's.  A little pricey ($150).  Wow! Do these feel great!  After putting my orthotics in them I feel I can run forever with very little pain.  I love the way they hold my whole foot together when I take a step instead of allowing my feet to go flat.

 

It's little things like finding the perfect shoe that will help me accomplish the big things like running a half marathon.  So, find a shoe that fits and see how far they'll take you.