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Wednesday, February 1, 2017

The Three Words that Changed My Life

In September I had one of the most important medical appointments of my life.

Zebras are the mascots of rare conditions

But before I get to the diagnosis, lets get a little history.

As a child I remember many things about my body and health. Most importantly I remember not following my passion for dance into a career, though I wanted to, because I didn't think my body would make it and I didn't know what else I would do. I remember always feeling like my body was old and often saying I wished I had a new one. I remember spending most days in the nurses office after lunch due to stomach pain. I remember spending more time than I would like sitting and waiting on the toilet (sorry TMI).  I remember fainting more often that I would like. Once at my cousin's high school graduation, once at the flea market, once at home alone I tried to get to my room in time but ended up hitting my head on the way down. I remember when I didn't faint I often felt like I might, especially when I had to wash the dishes, and of course my parents didn't believe me, who would. I remember nearly fainting during a track meet, it was my last. I remember frequently hyper extending my knees during athletics. I remember being very flexible and trying out tricks, which included comfortable ways to sit that grossed my mother out. I began to experience shooting pain from my hip to my feet or from my shoulder to my wrist that seemed to follow my menstrual cycle. We visited a doctor who said it wasn't arthritis and that was the end of her help.

As I entered high school I started dancing. Flexibility came in handy here and I enjoyed it. I started experiencing very sharp pains when we would do across the floor exercises with turning or leaps. These took place in my ankles and in my neck and were scary as well as painful. I also started having to take my shoes off in class after practice because one of my ankles/feet would swell and my arch would drop. I also remember really working on not hyperextending my arms when we were supposed to have straight arms, which was hard. One odd incident that freaked my out happened in  a crowded hallway. A very big and tall football player was heading right toward me and I had no space to move so I quickly moved my shoulder to close my chest, and my sternum popped, quite painfully I might add.

In college the fatigue hit. I was on my college dance team and I had trouble getting out of bed and feeling faint. I had a weird partial faint during that time frame, but the nurse on campus assured me that my short stature was the cause of my fainting.....yeah she did. Around this time the back spasms started, at first painlessly then not so painlessly. I also had one trip to the ER for hip tendonitis, after starting a walking class.

Years later I began dancing again and always seemed to have some injury. Sprained ankle, sprained knee, same old sharp shooting pain in my neck or ankle, a torn rotator cuff (no known cause), a bulging disc in my neck, and my personal favorite rib subluxations. (A subluxation is a partial dislocation).

Fast forward to 2016.....

I was having a really rough time, I had a "back strain" that I had been dealing with for a year. I could barely walk due to knee pain and hips that kept going out of place, my ankles had begun to give out on me and hurt daily, my ribs were often out, and I kept spraining my wrist. I was doing one of my usual late night web searches when I happened upon those three words EHLERS-DANLOS SYNDROME. The journey began.

I initially saw a rheumatologist who said that I had Joint Hypermobility Syndrome, usually thought to be a benign condition, and would feel better as I aged. His response to my question about what to do for pain was " I don't prescribe Hydro". My mother told him that I wouldn't take that if he gave it to me. He then said "well take Aleve". When I said that Aleve didn't help he said "well don't take it if it doesn't work".

I was left confused but somewhat optimistic there was an answer. I found a few groups on Facebook and joined. I decided to give it one more chance and I set an appointment with a Geneticist and waited a few months for the appointment. To my great surprise this doctor was different. He not only diagnosed me with Ehlers-Danlos Syndrome Hypermobility Type but also Postural Orthostatic Tachycardia Syndrome or POTS (which explains the fainting and tummy trouble) and indicated Mast Cell may be a possibility. Now I have the alphabet on my medical chart EDS, POTS, MCAS

I am still dealing with the changes that all of this has made in my life. I am currently working my way through the grief of the life I had and the life I wanted to have.  A few years ago I was running 3 miles, doing zumba 2-3 times a week and getting at least 10,000 steps a day. Now I have some days where I have trouble putting on my shoes due to pain. But I still teach dance and try to get steps in. I have been told that running is out ( I have dents in my ankles due to all of the instability caused by the hypermobility) and I have been told I really shouldn't do zumba but with modifications I was told it is okay.

I think the hardest thing about all of this is that though it answers the questions I have had about my body for as long as I can remember, there is no answer as to what to actually do about it. Each person is impacted differently and not all approaches work for everyone. There is no cure for a genetic condition such as this. All I can do is learn about proper ways to do things, strengthen the muscles around my joints to try to reduce pain, listen to my body and prepare for fatigue, and buy as many braces, tools, and pain aids (ice, meds, creams) to have on hand for bad days.

I am a zebra warrior and my biggest advocate in this. I have met an awesome dazzle of fellow zebras and found even more strength than I ever knew I had. I have also found support in close friends as well as friends that I didn't know cared as much as they do.

Wednesday, July 13, 2016

The one piece of advice you need about womanhood

Forget all the other pieces of advice you have heard

This one actually matters........
As you prepare to become a "full adult" and as you move into new phases of life you will often encounter "shoulds " for each stage. These messages of what you should be doing can come from family members, friends, teachers, mentors, or targeted posts on social media (have you noticed that things are placed on your timeline based on your searches or demographics?). I have read more than my fair share of "What you should do by the time you are 30" or "Things to do in your 20s" type posts and I want to share my own wisdom.

Life is a unique experience for each person. I have known women close to my grandmother's age that went back to school for a first or new degree. I have met a woman that decided to take up sky diving at the ripe age of 70. Living your life based on others, especially others who don't know your story, is a great way to set yourself up for failure and disappointment. You will be trying to meet guidelines for someone else's life and may find later that you haven't done what you want to do with your life. Another side effect of reading and subscribing to these lists is thinking that if you haven’t been able to check things off yet that you should just throw in the towel. i.e. haven’t started college by 20= school's not for me.
So with this in mind, my advice is much more practical and it involves clothes.

One piece from my Cato's shopping trip

When you are in school {high school and college}there are always opportunities to purchase a shirt for this or that thing. Also there are plenty of times when you can get shirts for free. These shirts can seem meaningless and may be something you consider tossing when you are "so done with childish things". I would suggest keeping some and also getting a few of them in a size or two bigger than you currently wear.

  1. Not everyone gains size changing weight as they age, but everyone's body changes (boobies, babies, muscle gains)
  2. Nothing can prepare you for how nice fitting into a high school or college shirt in your 30's feels
  3. People stop giving you free shirts as you age and when you have to pay to stay in a hotel, pay for away from home food etc. for reunions trust me you will want a shirt in school colors that is $free.99
  4. There will come a time when you want to remember the experiences that made you who you are, for many people those times occur in school

End practical advice, go enjoy life.

Wednesday, May 25, 2016

What its like turning 30

This post was originally going to be titled "How I Know I'm Old" but I could hear the mouths of everyone reading over 30 so I chickened out. 

I want to preface this by saying I am not old. I know in the grand scheme of things I am not old. BUT in terms of how old I have previously been thus far in life....I am old.

That time I asked for a robe for Christmas

  1. I find most hip hop/rap either incredibly stupid or am appalled by its disgusting nature. 
  2. I can't stomach most pop music because it repeats the same 10 words over and over though that is what I used to love about it 
  3. I was picked for a Anti-aging product test, 30 is not old enough for advanced intervention facially, at least not for me. 
  4. The idea of dating and dressing up has lost its appeal.... Can't I just wear my sweats?
  5. I wait each week to see where the new grays will pop up. I remember being excited about them before.  Now I dread them,  because they are stubborn and short and I will have to wear wigs when I am fully gray.
  6. I take a lot of pictures like this....
  7. And the most annoying of all of these is the aches and pains. If I hit my finger today it will hurt the rest of the week, but I won't remember the reason. If I sit how I've always sat my knees will randomly decide they have had enough. Or I will switch positions on the couch and strain my hip (like literally this happened to me).
I have been very upset but this new thoughtful music selector me. Why do I care so much what idiotic thing a rapper used to rhyme his verses? Why can't I mindlessly sing along like I used to?

I think the answer to this is that now I care what my choices say about me. I am a professional and a person that hopes to be a parent one day. I think it matters who I support and represent through my choices. I also can't be a hypocrite when I talk to my under 18 clients. I have led discussions about healthy music so being caught in the grocery store parking lot singing along to "Trap Queen" might not be a good look.

Overall really my only complaint with getting "old" is saying goodbye to some facets of the old me. Though I can say that I am really enjoying so many aspects of this stage of life. This year - first as a 30 year old- I have crossed many things off of my to do list. I began singing again, I broke my dance training hiatus, and participated in two productions that built my acting skills.

I am more adventurous and realize that there is no time like the present. While as a child I may have dreamed of being a dancing, singing, acting celebrity. I never imagined finding a passion in my career field that was in no way related to these things. For many years I felt that this career path meant that I had to give up those dreams that were still very much a part of my being. This year I said "that's stupid, you dream for a reason".

So that is it my wisdom about getting "older". Things will change, so will you, but you can be an even greater you. If you want to, and put in the work to get there.

Tuesday, November 10, 2015

Open letter to my former dance teachers

Dear Former Dance Teachers,
I really wish that I could say that I have many warm memories of our time together but I do not. I joined the team after having danced for four years in high school with instructors that as a whole encouraged, supported and pushed me to be greater. While on your team I had two directors one lets call her Ms. Scale (because she made us weight in prior to performances) and the other lets call her Mrs. Put Down (because she questioned why I even made the team) who effectively broke my spirit.

Below you see me kicking with teammates during football season.
When I made the college dance team I was overjoyed. It was something I  dreamed about since I discovered dance. I went into the first semester with a great group of girls who were welcoming and fun. Unfortunately, I had also left home for the first time and knew no one going into my first year of college. There were also some issues back home that were never very far from my mind.
As football season got underway I was moving ahead with a relationship which would set the tone for my adult dating life. My boyfriend was doting and romantic by most accounts. He was also possessive, jealous, angry at the drop of a hat, and demeaning at times. Dance had always been my outlet so I looked forward to getting to practice.
I thought it was weird that we had to weigh in before practices but I went with it. After all Ms. Scale knew best. When I noticed a really sweet teammate not make the weekly cuts week after week, though she was a beautiful dancer, I was worried. When my body was sore from daily practices and aerobics class I asked you (Ms. Scale) if I should drop aerobics. Your response still haunts me, as you said I should stay in it for my weight. At this point in my life I had never thought about my weight. I was 5'3" about 120-125 lbs. (As you see me above.)
So after my first injury that year I kept going to practice, aerobics and now the trainer. All of which worked my injured shoulder with no rest. I also began to think around this time that my relationship was not as great as I had thought, but couldn't really seem to get out of it. Then a change happened. Mrs. Put Down took over the reigns.
At first I was excited to get to know you (Mrs. Put Down), but this quickly changed. During this time I was having health issues of the female variety. I often felt weak, had trouble getting out of bed and fainted from time to time. I also suffered some dance related issues including a pulled groin and ankle issues. While we prepped for competition you saw me get knocked out of the air and land on my ankle. You of course suggested I sit down that day but there was not much time to recoup. So I struggled to understand your lack of empathy for my difficulty doing turns on that same ankle.
I never saw a doctor during this time. Like many students in that time period I had no health insurance. Based on your attitude I felt like I should just be able to do better. You said to my face that you were not sure why I had made the team at all. You went on to say at a later time that I could not do switch leaps, triple turns, or fouettes. I thought there must be something wrong with me. Though I was not sure how anyone could do turns on the cheerleading mat, but if you said it I assumed it was just me.
Dance was no longer my outlet, it was the dreaded part of my day. Tryouts for competition came and for the first time in my life I did not make the cut. As if this was not hard enough I was the only person on the team that had been cut. I was expected to come to practice to run a routine I would not be a part of. At this point for the first time in my life I gave up. I could not bring myself to show up to practice. I contemplated quitting, which made no sense as dance was my life.
Prior to tryouts you told me that I needed extra practice with you, but you never scheduled it. You also told me that I needed to take dance classes over the summer, but I had no idea how I would pay for that. After I was cut you told me that next year you could see me on the football season team, but that you saw your elite dancers performing at competition. I understood you to mean this did not include me. So the message I received was that you had no hope for me improving. Even with the dance classes I needed you had counted me out.
So I decided not to tryout next year and spent the next three years of college missing dance. When I left school I got back into dance immediately and spent five years as a senior company member and dance teacher. I competed and performed often, once aboard a Carnival! cruise. I did triple pirouettes, switch leaps, and fouttes. There was something so empowering about being told that I could do something even though I could not do it initially. I still struggled with that shoulder and that ankle. Now 11 years later I still have trouble with my ankle. I finally saw a doctor and was told that my old injury had resulted in a torn ligament. The dancing that I had done on my unhealed ankle led to a loose mend that still causes instability. I also had a torn rotator cuff but I am not sure when that happened.
As I look back to my first year in college. I have some good and fun memories. I also realize that I was depressed and in an emotionally/mentally abusive relationship. I believe this had a lot to do with my performance on the team as well as the physical injuries that needed appropriate time to heal. I also realize that my weight became a major concern in my life. Ever since I have been attempting to "keep it under control" I have felt unable to. I also still struggle with feeling that I am good enough as a dancer.
I have tried to get over my experiences with both of you, Ms. and Mrs., and struggle with this. It wasn't until I was talking to a fellow therapist that I realized that this time was traumatic for me. I was a well adjusted young woman in regard to my weight and now I am fixated and feel like a failure for not being able to control it. I also avoid reunions with the team because if I was at risk then I am a disgrace now. I remember the first time I saw Mrs. following graduation, you said "did you finally graduate?". Its like just being cordial is outside of your abilities when it comes to me. I started college in 2003 and finished in 2007 I think I did pretty well where time is concerned.
It has taken me a lot of work to get back to accepting myself as a dancer even though I can not live life without dance. I wish that you knew how much your words hurt me at a time that I was already so vulnerable. I looked up to you as someone who was doing what I wanted to do. I trusted your opinions and your suggestions. Tough love is something that works for some but for me it is deflating.
If you get nothing else from this letter I hope that you understand the need to support other women. Accept them for what they bring to the table because everyone brings something. Also as a coach you should be a person that your team members can go to for support. I needed someone on campus to notice what I was going through. Things could have gone very bad for me, I could have ended my life or had it ended if my relationship had continued down the path that so many do when they start with emotional abuse. I came to dance because I was good at it and because it was a welcoming place. Both of those things were taken from me and I am still working on my recovery.
Unappreciated/deflated young dancer

Monday, July 6, 2015

Silver Lining Living

I remember hearing that "every cloud has a silver lining" and thinking that was a stupid way to say the situation won't suck forever. I never really agreed, how could there be a silver lining to losing a loved one or getting fired?

I experienced something recently that let me know that I am maturing as a woman and it is pretty awesome. A coworker of mine recently pointed out that I had been goofier than usual for several weeks. I, of course, quipped that I have been goofy all my life, but I realized that he was right. I thought about it and wondered if I was suppressing my feelings. I mean I have lost a loved one, a close former coworker (that was the subject of one of my earlier blogs) passed away, and I ended a relationship with a man I thought was perfect for me. So why was I so seemingly happy.

After pondering this for a while I believe that the reason I have been so much more like my normal self is that I am celebrating. I still wake up each day with the rest of my life ahead of me. I also made a choice to end a relationship with someone who was choosing not to put any effort into keeping me. That is a big deal! I didn't resort to name calling, I was clear about what my needs and expectations were, and when I saw that things were not changing after giving some time for change to happen- I got out. How mature am I?

I mean it still stings that someone who seemingly wanted to be with me so much in the beginning could give up and blame it on a busy schedule. Everyone everywhere is ALWAYS busy. Relationships are about making sacrifices and working to make things happen. It is true that things are often easier with the right person but you have to work at it as well. I will (I am sure) never know why things changed between us, but it doesn't matter.

Years ago I would still be in the relationship being neglected and sad, or I would have been breaking up and getting back together with him just trying to get him to see he needed to give me more. I am so proud that I made a decision to stick to my guns without being disrespectful. This was my first healthy, adult relationship. I am glad that I didn't ruin it by turning into a child because he couldn't own that he no longer wanted to date me. I hate when people push you away so they don't have to be the bad guy but hey at least I know that I am mature.
Yes that was shade.
I'm not completely reformed. :)

Sunday, February 1, 2015

How to save money and get things for FREE!!

I am a frugal person by nature and love a great deal......

My favorite price for an item is FREE

I have always looked for ways to save, really my mom started me on it and it just grew
from there. We always shopped clearance racks first,
 second hand stores, and discount stores for items
before checking full price retail stores for what we needed.
In the age of the internet purchase came new ways to do similar things.

I shop online pretty frequently especially since my move to a bigger area
 because I don't like lines. When shopping Online I earn money
 back by going through ebates.

The run down

  • is a website that offers you a percentage back when you shop online
  • The company gets paid to help online retailers observe online shopping experience
  • The company then passes that along to you in the form of cash back
  • The company alerts you to deals with companies you like or may like
  • The company also alerts you to extra cash back opportunities
I have been using this service for several years and find it worth it. You can join here.

Walmart Savings Catcher

I recently added the Walmart Savings Catcher to my many apps. I was skeptical
at first because why wouldn't they simply say
no matches were found? Yeah I am a little cynical...
but when I began using the app and actually getting money back?
I was happily surprised. Slowly but surely the cash back is
 adding up.

The run down

  • You shop as usual at Walmart
  • You upload your receipt to the savings catcher app
  • the Savings Catcher searches local advertised prices for what you purchased
  • If you paid more than the advertised price in your area Walmart sends you the cash back
  • You then have the choice of getting an e-gift card back when you are ready
  • Added bonus * the app keeps your uploaded receipts in the app
You can sign up here or here

I have also been aware of Freeflys for quite a while. I was sure that this
was going to be some sort of scam for spam....but I was proven
 wrong the first time I received free products in the mail. It is fairly simple
 to receive items and with Facebook page liking, and twitter updates you
don't even have to watch your email to know when things are being offered.

The run-down

  • Freeflys is a database of samples/coupons that can be requested
  • The samples usually just require your address but occasionally for you to sign up for a membership( I don't do those)
  • There are occasional sweepstakes (I don't do that either)
  • You wait at least 2 weeks
  • Check your mail
  • Enjoy your free things
I love this idea because it is like a surprise every few weeks. I often
 forget that I have requested a sample and when it arrives I am pleasantly
surprised. There are some times that I don't think it wise to enter my info
 on most sites but most of the time the items are from reputable companies.
You can sign up at the following location here

Local grocery chain deals

So I was going to link to Kroger which offers a free item
most Fridays.I feel like an extreme couponer when
I go through with several items and pay nada.
But then I realized based on your location this may be of no help to you.
I believe it is worth it to sign up for an account at what ever grocery store
 you use because most offer gas discounts, special coupons, birthday
coupons and lowered prices for members.

Walgreens and CVS

Just like mentioned above you received benefits for joining up with these
two. Frequent, almost more coupons than you can use.
Also (and this is my favorite part) Walgreens often sends
emails that have codes allowing you to get free picture prints
or photo books. I have personally used this many
MANY times. Have I mentioned I like FREE!?!?!!

If you know of any other ways I can save PLEASE let me know. I love free and cheap things ( that are equivalent to things at full price)

*This post contains affiliate links*

Monday, December 15, 2014

My target haul!

In September I took a new job, it is exactly what I want to be doing but it is a position in which I earn less than I previously did. This has meant that I have had less money to shop. I love when I am able to find good deals.
Check on my finds from a recent shopping trip.

The pink and white stripped dog sweater was $3 and the proceeds go to the ASPCA. The knee socks were $2.50 each and really help keep my legs warm in the winter months. The Oxfords were under $8 and have replaced tennis shoes when I go casual at work.
Summer modeling her new sweater! So cute!!!
My first day wearing my new shoes.
So it is possible to work with less and still have the occasional opportunity to add to your wardrobe with some items or replace things. Glad I made that impromptu trip to Target!