A Little Update

Seems like its been ages since I've written on this blog.  Well, I guess it has been ages!  Time seems to fly by lately.
My hips doing good.   No major complaints.  Things are still healing but I'm 96% back to all normal activities.  The screws can get a little annoying at times but nothing I can't handle. 
No major injuries for the past several months.  Still in PT for cervical instability.   POTS has probably been giving more trouble than anything else.  But that's life!
For the past two weeks I've been working on opening up a studio and gift shop in town.  It been a lot of fun.  It feels good to work hard at something and get lots accomplished.  POTS has pocked its head in the door more than once during these weeks but its all about adapting and making the most of what you CAN do.  Setting up a shop has been a good experience.  Its been good to just step out and take a risk.  Learning new business terminology (ugh!), and what its like to have a lot on your plate!  I'm loving every moment of it and wouldn't want to do anything else right now!

Will post more about my business adventures and pics later!!

Ramblings

One bum shoulder (right) and with the fact that I'm right handed I figured I'd sit down and begin the art of mastering such tedious matters left handed!  Hip surgery is approaching and as I prepare for that I'm also busy with pre-op appointments, commissions ect. ect. ect.....

I had to donate over 500ml of blood for this surgery coming up.  With all honesty, I'm just starting to feel a little better from it and its been a week.   Losing all that blood really didn't help POTS;)

one of many paintings I've been working on!

LOVE it !!!!!

Good Ol' Summertime

My summer has been a busy one, but I can't complain too much.  I'd rather have things to do than nothing at all! It was only about three weeks ago that I really started reacting to the heat.  I'm so thankful for feeling a wee bit better this summer:D

Earlier in the week, I went on a trip.  It was lots of fun but sitting in the car for 10hours and then the trip to PT wasn't all that great on my SI joint and hip.  My SI came out of place the other night.  I was able to get it back in but during PT the next day it came out again.  My plan for this week is lots of time in the gym and no long car trips.  With POTS really giving me a hard time the past week I'll probably remain horizontal when I can't be vertical :)

I have to say that I have found my new all time favorite smoothie! A friend introduced me to green smoothies.  The sound 'green' smoothies made me.......lets just say it got me interested :) She really liked them and with that said, I was willing to try it.   Not because she was my best friend, more like I trusted her taste buds better than say....my brothers :D

It doesn't look all that green because I put blueberries in it.

You can put pretty much anything you want in it. Today I used bananas, spinach, avocado, blueberries and frozen orange juice.  Next time I'm going to put our homemade Greek yogurt in it!!  You pretty much put anything vegetable and fruity in it and walla!! Since I don't eat vegetables for breakfast this is a good way to have something full of protein and vegetables and still call it breakfast.  It even a good snack and also makes a good lunch :)

A few pictures from a rodeo earlier this month.

Gluten-free Granola Fruit Bars

I created this gluten free recipe but it wasn't without the help of a recipe on the back of a granola bag.  Both the recipe and the granola included gluten.  I used the basic concepts, used the same measurements and added different ingredients. Note.  These recipes do include oats which I can tolerate but are not officially gluten free unless you use gluten free oats.

Gluten-Free Granola Fruit Bars:preheat oven to 350*

In a bowl mix:

3/4 cup butter
3/4 cup white sugar
*1/4 cup brown sugar

2 eggs
1 tsp vanilla
1 cup Pamela's gluten-free Pancake and Baking Flour

1tsp salt

1 1/2 cups gluten-free oats (I use the regular Quaker Oats)
1 1/2 cups gluten-free granola **

1/2 cup shredded coconut

1/4 to 1/3 chocolate chips

*Last time I tried using a little less than 1/4 cup of honey instead of brown sugar and it was a little bit crumbly.

**You can use store-bought gluten-free granola or this is the homemade recipe I use with regular oats.

Homemade Granola: 

preheat oven to 350*

5 cups gluten-free oats or regular oats
1 cup shredded coconut

1 cup nuts

1 cup honey

1/2 cup canola oil

Mix the above ingredients in a bowl and spread onto a baking sheet.  Cook for ten minutes.  When it turns light brown flip the granola and sprinkle 1 cup plus of raisins, cranberries ect. and put back in oven for a few minutes until brown. 

Once the granola is taken out of the oven, it will need a lot of stirring until its cool. Otherwise, it will stick to the pan.

Blueberry, Banana, Peanut Butter Smoothie

Since I've been on a Gluten-free diet,  I always like concocting new smoothies. The other day I read about someone liking a smoothie that she called a Blueberry, Banana, Peanut Butter Smoothie.  At first I thought it would be pretty disgusting. But after thinking on it, I decided to be brave and try it (Something I'm really bad at when it comes to food. I had no recipe to follow so I just threw together the following ingredients.  IT IS SO DELICIOUS!!! Also note that I do not measure out my ingredients  so the following amounts are close to what I use.

In a blender mix:

1 banana
1 cup of Blueberries
1-2 TBSP Peanut Butter (almond butter, ect)
1/2 plus tsp of vanilla
1-2 TBSP of shredded coconut
2 cups plus of milk (almond milk, coconut milk, ect)

1 tsp of sugar (optional.  I have found with smoothies, sugar isn't always necessary)

1/2 to 1 cup blueberry Keifer (optional.  If using keifer...reduce milk some. Also Keifer is 99% lactose free!)

After blended add 1/3 cup granola

ENJOY!!

2012 Recap and New Year

Year 2012:
A year ago, things were a lot different for me.  I was in chronic pain and my joints would shift, dislocate and sublux a lot.  The previous summer I was diagnosed with POTS and EDS. It seemed like I went to Chemistry class every week with a different brace on.  A sling one week and knee brace the other.
Last February, I started six months of Physical Therapy.  At first I wasn't convinced it was going to help one bit.  But by the time I was discharged in June, I was 85-90% pain free.  My knees, hips, shoulders, and wrists didn't pop out and or shift.
To honestly say, I wasn't sure how to take it.  It was strange to be given a small taste of what 'normal actually felt like. Then the summer heat hit and POTS came with a thud.  It was so bad at one point that I could not get UP from the floor after an exercise because I was too weak and exhausted.  I couldn't sit down at the table and write a simple email for more than a minute (sometimes not even that) before I was hit with REALLY bad nausea and fatigue. Forming a sentence was exhausting. I had to draw laying on the floor sometimes.
At this point I had let go of a lot of things.  I had content with simple little things.  Being able to go surfing was amazing. Something I never thought I get to do.


As the summer months came and went, POTS never really let lose.  Then, in November, we switched doctors and now I have a WONDERFUL team working with me.  By the end of November I was put on a trial of hydration therapy (saline IV infusions).  It seems like such a small thing, but the difference it made wasn't.  I went from limited daily activity, juggling simple daily tasks, matching my physical abilities and taking all day to workout, to having more stamina and endurance.  School is less of a problems than what it was, and I can sit at the table and do projects and work.  My daily tasks have increased as well and my ability to keep up with 'life' a bit more has improved.

Current 2013:
Right, now I'm in PT again. This time for cervical instability.   I'm about a week and a half behind what my Therapist was expecting me to be. The therapy is mainly focusing on strengthening parts of the neck that 'normal' people would never have to strengthen.  My headaches have decreased but I still have a ways to go with my strength and endurance in my neck.

Although huge strides of improvement have been taken, I still have struggles and issues.  They haven't all gone away. And I'm fine with that.  A year ago I never expected to be were I am right now.  For me, learning to embrace trials and struggles has been a learning process.  God NEVER allows things for no good reason.  And I am thankful and blessed for all that He has given me and walked me through.....the good and so called bad. I'm better for it.  No matter how yucky and downright tough it gets, there truly is a purpose to it all. GOOD will come out of it.  Whether it was what we expect or not!

A few of my 2013 goals and projects!
-increase strength and get in better shape ( A life long goal)
-Go surfing!!!!! (I've been dying to get out there again and master the delicate art of balancing on a surf board!! Ugh......I'm still frustrated :P
-Make the most of every moment
-Get my drivers license....ahhh...scary:-)
-It's not exactly a goal (maybe a in the next two years goal), but I do want to get my hip surgery DONE......FINISH!!! Whether this year or next.
-Finish writing a story I started six years ago (we will see.....cough....how this one goes ;-)
-Scrapbook two albums
-Finish school
-Continue working on my reading list.
-Take a few western riding classes

Just got my 'sketch a day' sketchbook the other day!

 

Please pray for a dear friend of mine.  

http://www.caringbridge.org/visit/allisonworkman

(you will also find her link on my blog list)

Finally Getting Hydrated

I'm so happy with the outcome of the hydration therapy.  Can't believe how good I'm actually feeling!

SOME OF THE PROS:
-more energy
-can do school with less trouble
-tons more strength and energy with working out
-less nausea, lightheaded ect.

After going without an IV saline for four days, it took the nurse ten minutes and two pokes to find a vein.  I was so dehydrated that my veins had retracted significantly! 

I still have moments of feeling really bad but they are less frequent and I can usually take care of it with fluid, salt ect. 

Biking-good or bad for hip chicks.

Hm. Well, to answer that question........it's NO.  I tried several times but it just doesn't go over very well with my shallow hip sockets.  As my physical therapist said, walking is good for my hips but bad for my back and knees.  Biking on the other hand is bad for my hips and good for my knees and back.  So for now, until my hips are fixed I guess its time to put the bike away.  There's always another time.

While I'm at it, I might as well throw in the latest on my dear old friend....POTS!  This past week I have done two days of hydration therapy.  1.5L of fluid by IV, here at home.  If it continues to improve and really help me, there will be a discussion with my doc about putting in a port. One more week of treatment and then we will see him about what to do next.

Just Another Hip Chick: Part One

My left hip has been bothering me for several years.  Physical therapy has helped strengthen it but there has been something going on there that nothing has helped.  Honestly, I was wondering if I would get diagnosed with some type of hip dysplasia but part of me didn't really think it was going to be significant.  But when I saw a hip surgeon a week ago, x-rays did in fact show I have hip dysplasia in both hips.  Hip dysplasia is when your hip sockets are really shallow.  The joint doesn't sit in the socket correctly so subluxations, dislocations  and labrum tears are common (I also have a tear).  A Ganz osteotomy (loosely translated, as major hip surgery;) has been recommended.   My doctor encouraged me to make a decision of when to do it within the next three years. We are thinking sooner rather than later but haven't made a decision yet.  The recovery is challenging.  A week in the hospital, two months with no weight bearing on the operated leg and six months of rehab.

The day I was diagnosed with hip dysplasia I didn't really know what to think.  It was a mix of emotions.  I couldn't figure out if I was scared or what I was thinking.  What was I afraid of? What was expected of me?  I suddenly remembered you can look at it in two different ways and which way was I suppose to see it? Simple as that. You can view obstacles or what seems like a terrible thing as the end of the world, or you can realize that sometimes those are the times for the best opportunities to show up. It really isn't anywhere near the end of the world and with all honestly theres a whole lot more to life than a bum joint or a major operation.  A WHOLE lot more!
 

Resources:
 - How Stuff Works
 -Hip Dysplasia

Missing the ocean

Finally home after a week of vacation!  Its good to be back but at the same time I miss the ocean, waves, sun, and salt water.
I'm completely hooked on surfing now.  Getting up on the board was actually really easy but it was the balancing and standing part that was hard.  I was expecting the complete opposite so it was really satisfying to nail the getting up part but kinda disappointing about the standing.  I only had a hour out there so leaving was hard.  I had an itch to get out there and do it until I got it.  But I left with more goals and a hankering to get even stronger for next year.

The paddling wasn't a problem,  Just walking through knee deep water with strong currents was really hard.  Next time I'll just paddle.   My instructor was really helpful and understanding.  For the lesson he pushed my into the wave.

Besides surfing I had lots of fun.  We went shopping in lots of little art and craft shops.  Got to see tons of birds and a few dolphins!!  And went swimming whenever I could.

Beautiful sunsets!

Saying goodby

Since the weather has cooled down POTS has become a bit easier to handle.  Which is a nice relief to say the least.  I'm hoping to get a few projects done this week.......we'll see how that goes!

For The POTS Dictionary

Brain fog n- 1. the inability to focus and make sense of something. 2. lack of concentration and the inability to read or understand things. 3. the act of reading and having the words travel no further than the retina......forget about the optic nerve. 4. the act of listening and having the words go in one ear and taking ten minutes for them to come out the other in translation. 5. the act of relating to Gilligan's absent mindedness and stupidity in situations that shouldn't have taken that much thought. 6. being present in body and absent in mind. 7. when Where's My Mother by Dr. Suess is hard to understand. 8. the feeling of being an air head.

*Feel free to add your definition as well!!!!!!

A Summer with POTS

This past weekend brought 70 degree weather and with it, the first time I felt so good in a LONG time.  Anything over 80 degrees makes me feel pretty awful.  The heat is back today but this weekend gave me hope that I'll really will be feeling better within the next month or two.

During the last couple of months, I have had a hard time sitting at the computer for more than a minute before I'd feel exhausted and develop extreme nausea and the feeling like someone punched me in the stomach.  Hense the lack in posts, email, ect.  School and working out have also become extra difficult with brain fog, shear exhaustion, weakness ect. Since I also have EDS, putting off a good workout or even moving around is not an option........that is if I don't want to get right back to where I was at the beginning of this year (joints shifting, subluxing, and very painful ............NOT FUN.  But the workout has easily been taking the entire day as opposed to an hour or two.   My physical therapist is so encouraging but insists that as long as ALL of the 16 exercises are done and there is a day off inbetween,  my "Pokealong" workout is just fine.

It has certainly been a challenging and at times a very frustrating year.  I had to do a lot of letting go when I wanted to take over and make myself study or workout.  I don't make daily 'schedules'  and plans anymore because I know that my day is going to be totally unpredictable with POTS.  I really just have to go with the flow. There have been many times when I hated doing it but I had to close my physics book because in reality, with all the brain fog and inability to understand a sentence, I needed to find something else that I COULD do and be a little bit more productive in.....although sometimes it was nothing.

Really??

I got so much done yesterday.  I cleaned, worked out, worked on my essay, went for a walk, got some baking done.   I mean, what else could you ask for?  I was feel pretty good :-)
Later this morning, I started getting some pain in my left shoulder.  Then it got really bad and started going down my arm, all the way to my hand.  My mom thought it must have been from carrying a water bottle on my walk.  Honestly, I thought that I wouldn't have to deal with that...........it wasn't THAT much weight.  SO, I called my physical therapist and he agreed that it was probably from carrying a water bottle. The weight pulling my 'straight' arm kind of tugged on my loose shoulder.  Usually, when it hurts or feels like the joint has slipped out of place in the socket, I can move my arm a certain way and it will pop back.  It didn't work this time.  So I'm not sure what happened to it: just what made it hurt.  

The game plan is to ice it and when I go for a walk I need to make sure that my elbow is bent when I carry my water bottle.  The act of accommodating with EDS!!! I'm not sure about you, but right now I'm thinking...........who usually has to worry about how they carry a simple water bottle??  At least it sounds crazy :P

As for a little update.  My ankle still the same.  My hip is a little worse.  I have an appointment with a really good hip doctor for.................hmm.......well...........December.  We are on the cancellation list, don't worry :-)  I was officially discharged several weeks ago! And my physical therapist did say I could go surfing in a few weeks!! I'm SO excited!!! I'm trying to figure out what kind of braces I'm going to need to get. 

As for tomorrow, it's a horseback riding trial and a 2nd art class in the morning.  We will see if I end up sleeping the afternoon away :-) Tomorrow is my active day.  I try to take one day off and rest between active days.  It seems to work fairly well.  I just need to still pace myself on the busy days and not pack too much stuff into them :-)

"live life at your own pace" ??

That’s what you are told when diagnosed with POTS.  When I first heard that I kind of pushed it aside and ignored it, thinking it sounded really………….hmm…..can I say spoiled and……selfish.  I thought that if I just pushed through the fatigue and the ‘not feeling well’ and stopped slacking that I might be able to learn how to deal with it.   NOT a good idea.  I guess I'm sort of learning just what it might mean..........especially this week.  Sunday night I babysat a 2 1/2 year old.  For about an hour and a half, she literally screamed, fussed, cried ect.  It completely wore me OUT.  mom had to come over and put her to bed for me.....I was conked out on the sofa.  I think it was the noise and stress of trying to stop her crying that did it.  I ended up sleeping ok, and when I got back home in the morning I went back to bed.  I had planned on taking my last Chemistry test that morning because I had PT later in the morning and I had to babysit overnight again Monday night.  I figured that I would be too tired to it do later so it was basically then or never………so I thought. Mom was not convinced that I should take it because I bombed the same test a month or so prior partially because of fatigue and ‘brain fog’…….thanks to POTS!!  So I just rested for a little while and left for PT later that morning. 

The news with PT is short but a lot!  I have one more appointment before being discharged!!!!!!!!!!!! The other thing is I’m probably going to have to see a doctor for my hip to find out if they can’t do some non-surgical stuff to it.  And I’m not sure what’s going to happen to my ankle.  It still bothers me a bit and I now have tendonitis in it but it really doesn’t stop me from doing anything, only hurts occasionally. 

After PT and lunch, I slept most of the 2 hour drive home, and that’s including thirty minutes of waiting for mom to get out of the grocery store (something I never do).  Once I came home I went straight to bed and slept for about three hours.  Mom had to try to wake me up several times and each time I went right back to sleep.  I finally got up and had dinner.  Around that time I found out that the babysitting job had been canceled…………more sleep! I was in bed around eight thirty or nine and got up around nine thirty in the morning.  By then I think I felt like I was beginning to revive some, enough to take the test. 

This past week has been basically been about not overdoing it.  If I want or need to do something I have to prioritize and not do everything at once or in one day.  I’m not good at it and probably drive mom up the wall when I insist on doing stuff.  Hopefully I can get the hang of it SOON!

I can't say that "living life on your own pace" is selfish because sometimes you really don't have a choice.  You may insist on something but your body can insist on something entirely different and it usually wins.  It’s the admitting it and actually "living life at your own pace" that is the hard part. It’s not that you are giving up, it’s just you have to be more creative and unique with what you do and how.  

Five Days and Counting!

Mom and I start our trip down south in five days to spend a few days visiting friends !!  I also get to hang out with my oldest brother!

Right now its more of trying to get school done and some chores.  As a matter of fact, packing hasn't even begun and probably won't until Saturday.  First a chemistry test, finish a lab report and maybe another test or so.

I didn't go to PT today :( For the past few days my poor heart can't seem to make up its mind to speed up or slow down.  The plan was that if it wasn't better this morning that we wouldn't go to PT.  This morning it was better but just not enough.  We think its just having to do with my body getting use to the new medication and possible being too active Friday with a field trip and picnic and fun.  Huh.  More energy so more fun.  Crash.  POTS is so persnickety!

Finally I think its time for some humor.  How about my favorite character in Hogan Heroes with my favorite saying!

(Google image)

This is actually the back of a T-shirt!  Go here for more information.

(Google image)

Sgt. Schultz
(Google image)

A Peek into POTS

Along with EDS, I am dealing with POTS: Postural Orthostatic Tachycardia Syndrome, a dysfunction of the autonomic nervous system.   It is found in approximately 1/3 to 1/2 of those with EDS, hypermobility and classic types.  I just found this great (but long) video from DINET.org on POTS.  No one can see the challenges with EDS unless there is a visual cue.  When I wear my elbow or knee brace, I get questions like "did you hurt yourself playing volleyball?"  ".....basketball?"  Well, no.  Either of those would probably do damage to me!  (But I don't say that.)  POTS is even more "invisible".   There are no braces or ice packs to give anyone a clue that I'm in the midst of a very real challenge during a flare up.  I think this video gives a good glimpse into the hows, whys and the what-it's-like of POTS.

Gu Brew

My mom heard of a electrolyte tablet called Nunn and after looking around and finding some, we realized it wouldn't have nearly as much sodium as a 32 oz. Powerade and would cost a lot more.  A week or so later someone told us about GU Brew.  Most bike stores should carry it.  We found some at Dicks Sporting Goods.  I can say I definitely like it a LOT better than Powerade. First off, I get more sodium per fluid ounce from it than I would with a Powerade.  And most of all, it tastes better and is more refreshing, probably because it doesn't have all the dye and artificial flavoring.  The kitchen isn't cluttered with 32oz bottles of Powerade.  I just pop a tablet into my water bottle and I'm good to go!

 As far as PT and all that stuff, it’s going well.  I started hurting Monday evening.  I thought it was from sitting in the car all day to go to a doctor’s appointment.  I now think (since I'm still hurting) that it was also due to the weather.  I leave for PT in just a little while.  My hip and ankle are still the two main concerns. The outer part of my knee has gotten really tender again, so I'll talk to him about that.  My physical therapist started doing a new exercise on my shoulders since my left one seemed to have slipped out of place inside the socket two weeks ago. But, all in all, things seem to be ok.

I went to see my POTS doctor and he seemed fairly pleased with things - as far as blood pressure and all goes.  He did put me on another medication and is confident that it will help improve other POTS related issues I have been having.  School has become really hard due to problems with concentration and fatigue.  I'll start the meds in a day or so.