Tuesday, May 14, 2013

There is No Cure

Those are tough words for me to wrap my head around. I've worked all my life to fix things, to mend whatever is broken. I grew up thinking if a person worked hard enough, they could do anything they set their mind to. To now accept that I can't do something I love, no matter what, because I am physically incapable is both frustrating and humbling at the same time. After discussions with my general practitioner, physical therapist, orthopedic surgeon, and gastroenterologist, they all agree that I have no choice but to limit my daily activity to things that will not continue to overstretch the joints in my body. My shoulders and knees are shot and there is nothing anyone can do about it. Since the problem is my connective tissue and not the joints themselves, surgery isn't an option.

The worst part was the looks on their faces when they described how this was going to play out.

You see, my body didn't come with enough collagen. It is called Joint Hypermobility Syndrome. My body can best be described as being similar to a marionette. Very little is holding all the joints together and what is there has no strength to keep me upright. Everything is controlled by the strings, or in my case the muscles. If the muscles are allowed to go lax, I'll end up a big old pile of bones.  If I stretch too far in any direction, I risk injury. If anything were to yank on my arm, for instance a goat, I would have to start all over on the healing process. Which I have done three times in as many months and I am still nursing the last one.  I've pretty much used up all of my physical therapy allowance from the insurance company. Now I am being transitioned to an exercise physiologist who will teach me how to avoid further injury, but still strengthen the muscle.

The doctors winced because it's not going to be pretty.

I am going to be in pain every day for the rest of my life. But the reality is, that's nothing new. I was born this way. I've already been in pain every day of my life. Now I just know why. Now I understand why I had horrible growing pains as a youth. Why I've had so many sprains and dislocations. Why my neck is constantly out of alignment. In a way it is a relief because now I know I'm not a wimp. There is a reason I hurt. There is a reason I have trouble keeping up with everyone else. I get it. Now that I fully understand it, I can work within those parameters.

It does, however, mean I am going to have to change my lifestyle.

They were very specific when they told me, "No more catching escaped goats or flinging hay bales." Pretty much every farming task you can imagine is on the things-to-avoid list. At this point I can't even walk my dogs on a leash. Which, by the way, the dogs were thrilled to hear because they want no part of this whole exercising thing. They are far too busy holding down the porch. I will have to give up the full-time ag position at work. A position that would be my dream job, if only I had an able body.

It would be easy to have a negative outlook on all this.

But the reality is, I know far too many people in much worse situations. I have lost far too many friends and family. I know far too many people living with chronic disease. I am not going to sit around and focus on what I can't do. I am going to focus on what I can do. I can get up and walk across the room, many people can't. I can fix a meal for my family, many people can't. I can still enjoy some of my hobbies, many people cant.

I'll miss the animals, but I can still visit. Many others can't.

Someday I will be able to look back on this and understand the reason this has come to light in this time of my life. There is always a reason. Until then, I'll just keep swimming.

27 comments:

Kim said...

You are awesome, and I KNOW that the BEST is yet to come!
Kim
P.S. You can still spin, though, right?

Jean said...

Hugs coming your way! Hope you can still spin and quilt and write.

Julie-Ann said...

You have a good attitude! You can now focus on the things you can do and that you love to do. And, when you hurt you can join the dogs on the porch!

Angela said...

Oh honey I am so sorry. Wrapping your mind around it all takes time. And I can totally understand the "now you know" part. You are not crazy or a cry baby. You simply hurt! Get into your writing and wooly goodness and sewing. Channel this into your other passions. You got this!!!

Michelle May-The Raspberry Rabbits said...

And what you can do, so very well I might add, is take incredible photos of the animals and write amazing stories about them. Your outlook is wonderful and to be admired. Hugs and best wishes.

Christine said...

:) Yes, Kim, I can spin!

Michelle said...

Oh Christine, I wish I could wrap my arms (gently) around you for a big ol' bear hug and some shared tears. God was leading when you had to give up the farm and found your beautiful old house, and hopefully you can still do all the fiber craft demonstrations at work. Yes, many others have it much worse, but it IS okay to mourn a little as you move on.

Love and hugs from Boulderneigh.

Milah Frost said...

You know I too have had a dose of reality lately. :(
And you're right, no matter how difficult things get, there is always someone who is worse off. The good news is it's not fatal, you will learn your limits and make adjustments, thank God for that.
And I think Michelle is right, God has been leading you all along. I think you have a book or two in you, Christine, maybe the time for that is now.

Elaine said...

Kim is absolutely right--the best is yet to come. I'm very happy to hear that you can still spin and maybe a little knitting, too?

Christine said...

Oddly, knitting is a bit of an issue for me right now. But I think that will improve once this latest injury heals.

Sunny said...

I know that you will thrive within your new constraints. You have a great can do attitude, even if you can't do it all. Best of Wishes!!!

Lynda said...

If you are like me, physical limitations drive me a bit crazy because I am an active person. However, like you, we cut back to avoid injury. Mine & hubby's is just arthritis though - - - not the major deal you have. Although you don't want to have to wear apparatus equipment - - are there any kind of braces, etc. that will help with stabilization, e.g, a neck brace. That would help decrease over-stretching? I don't know - - - am just trying to comprehend what you have ahead of you - - and am so sorry you have been dealt this hand. Even if others have worse to deal with, it does not sound like an easy road to travel.

Robin said...

What a discovery! I'm sure it's a relief to finally know what is wrong and what to do so it doesn't become worse. I'm glad you can still spin. I'll bet you'll find other talents that you aren't aware of yet. . . a new adventure.

Earlene Landis said...

You have a wonderful attitude through all this.
Like you said...at least you know and you can go from there.
((((Huhs)))
Earlene

Tombstone Livestock said...

What's the saying "For every door that closes a window opens" ... yes life is a series of changes, but you still have opportunities. Your ability to know what you limitations are will help you enjoy the things you can do. Enjoy Sheville, keep taking critter pictures, just let someone else do the wrangling for you. Take care, and keep blogging.

Becky Caudill said...

I'm sad to read that you're going to have to give up something you love so much but as someone that struggled for years thinking I was just lazy and had no reason for my aches and pains, I can tell you a great weight is lifted in knowing that there's a reason to it all (even if there's not necessarily a cure for you). And while it sucks so much to have this affliction, I'll let you in on a little tip: since a lot of your life is going to suck because of it, make it work for you when you want to get out of doing something. "I'm sorry, my body just hurts so bad today. It's that damn illness." People will never push you to do things you don't want to do. :-)

Karen Anne said...

I would get yourself to a pain center at the best hospital you can get to and work with a pain doctor. He or she will tell you that you and they may have to try several combinations of things to reduce pain, but those guys are the people to see if you're looking at chronic pain. They're the specialists in this.

Also, I wonder if you qualify for Social Security disability. I know it generally takes a couple of appeals to get this, but replacement income is nothing to sneeze at.

Jayne said...

Well, damn. I read the whole paper about JHS that you linked to in a previous post and I have to say: that pretty much sucks. I'm sorry you have to give up the ag position--I know how much you loved it. Can you still volunteer there?

I agree with Milah that you have a book or two in you. The photos that you've taken of the animals and the funny stories you tell about them could make a charming children's book, and be a good fundraiser for the historic site if the books are sold in the visitor's center.

Florida Farm Girl said...

I'm sorry to hear that you won't be able to continue with the job. I know how much you loved it. But, as you said, there are other things to do that you CAN do, so good for you for realizing that and looking forward to them. I wear a purple bracelet that says "we've got this" for a 3 year old great niece who has an inoperable tumor. So, hugs and good luck as you find a way to move forward within the parameters that you now face. Hugs, again.

Susie Q said...

Hi Christine, it is always difficult when you have these types of news given to you. I know I did when they told me I had breast cancer and our Youngest was one year old. But twelve years later I am here and yes I have had to change things but humans are very good at adapting. I wish you all the very best in the next few months as you change things up and know that we are all thinking of you. Hugs Susie x

12Paws said...

So very sorry--I will keep you in my prayers. In a sense I know where you're at, altho I'm far older than you. I had spinal stenoses for over 20 yrs until I found a surgeon who knew how to fix them. BUT, the nerve & muscle damage to my lower limbs is extensive and my leg strength is very compromised. I'm still independent but I do grieve over all the things I just cannot do. I keep focusing on my belief that God is good & He is in control. Your home is enchanting--your craft/fiber room is a dream. Take care of yourself & unexpected good things will happen.

Christine said...

From what I understand the braces are a bad idea. They want the muscles to do all the work in order to stay toned. In theory if I continue to safely work out I will eventually start to feel better. Assuming I don't do anything stupid and hurt myself. THAT is my biggest challenge.

Lori Skoog said...

You have a wonderful attitude and I'm pretty sure you will take full advantage of all things you CAN do. I hope you can get a handle on the pain part. Big hugs from Skoog Farm.

Dinah said...

Sending hugs to you, Christine. Remember the old saying about "When one door closes, a window of opportunity opens." You have SO many talents, I know you'll have something great to tell us about soon!

-Dinah

julieQ said...

Yes! Swim, swim, swim!! I love your spirit, and am sorry this is what you have to deal with...one day at a time!!

Mary said...

Thank you so much for taking charge of this ugly disease and sharing the challenge. You may not be able to let goats, dogs, or other special friends drag you around, but you have a beautiful way with words, and great insight. You'll make a perfect advocate for CTD's and no doubt raise awareness and support for zebras such as you and me.

If you haven't read Brad Tinkle's book about it, please do - it will explain many of those odd injuries, aches, and pains that have made your physicians scratch their heads over the years, and if like me, raised self-doubt to new, depressing heights (or rather, lows).

Give away roller blades - check. Give away ice skates - check.
Donate marathon training books to the library - check.
Give away the racket ball racket - check.
Give away the tennis racket - well, not yet, but it hasn't been out of my closet in 4 years.
Give away my spirit - I pray to God never.

Thank you again. You have touched my soul.
Mary, a red-speckled zebra

Jenn said...

Hi Christine, I just wanted to let you know that your story touched my heart. My sweet mother in law Mary has Joint Hypermobility Syndrome also. I know this may be too much to ask but she doesn't know anyone else with this disease and I thought it would be a comfort to both of you to be able to communicate with someone who is going through what you are. If you are interested in contacting her please email me at jennifera.wilbur at gmail dot com. Thank you so very much for writing about this in such an uplifting manner.