The True Cost of Marrying Someone with Chronic Illness

The True Cost of Marrying Someone with Chronic Illness

 

Since becoming engaged last May, my life has been a whirlwind of dress shopping, venue searching, color picking, and the countless joys and challenges of planning a wedding. My fiancé and I have both worked hard to ensure the focus of our wedding continues to be our shared faith in God, and excluding some struggle with the guest list, planning thus far has been quite enjoyable.

img_1373
He did himself proud on the ring, amirite?

As long as I’ve known him, my fiancé has been incredibly compassionate and patient when it comes to my EDS diagnosis. He’s taken time to learn about the condition, my prognosis, what works for my body and what doesn’t, and never second-guesses when I’m just too tired or in too much pain to do something. He pushes me to stay committed to my physical fitness and does little things every day that make life so much easier for me.

When two become one, finances inevitably enter the conversation at some point. All along, I’ve been so thankful for the grace my fiancé shows when dealing with my health, and he’s made it clear that I shouldn’t feel guilt about this “burden” he is now helping me to carry. And until this point, I’ve agreed with him.

In the last few weeks, as we’ve been figuring out health insurance options, I’ve begun thinking about my medical costs. All things considered, it’s not bad. A few prescriptions, office visits and spinal procedures with my specialist here and there. But because I won’t turn 26 until after the wedding, I’ve been fortunate to always be included in my mother’s insurance coverage which, because she is a teacher, is the Cadillac of insurance plans.

Tonight I realized that I’ll soon be paying more for my medical care than ever before, and a large part of that burden falls on my soon-to-be husband. The amount of guilt I feel for this fact is colossal. I know that my health has nothing to do with why we are getting married, but I can’t help feeling regret for the enormous responsibility he is incurring by marrying me.

Fortunately, my fiancé does not feel this way. As he once again told me tonight, “it’s only money.” I’m abundantly grateful for the understanding and unequivocal love he has for me. Not only in the face of this financial burden, but in everything that comes with loving someone with chronic pain. He’s going into this knowing about the good and bad days I have. Days where I’m talking to him at million miles an hour because for once my brain isn’t foggy, and days where I can do nothing but lay on the couch out of sheer exhaustion and pain.

Words cannot express the thankfulness I feel for finding such a good man. I suppose the true cost, or rather the price to pay, for marrying someone with chronic illness is unconditional love. Because that’s what it takes to love me on my bad days. On those days, where I feel most guilty for asking him to put up with all of this, I also feel awfully blessed to have found someone who will love me through it all.

14500462_1197409500305585_4601655573301855540_o
Words can’t express my thankfulness, but maybe kisses can?
Advertisements
Spoons vs. PRs

Spoons vs. PRs

Some days I feel like I can conquer anything – I set a new squat record, have an awesome session with a PT client, cook a dinner that impresses my very kitchen-savvy fiancé…little things that mean big wins for someone with chronic pain.  But on other days, it takes everything in me just to get out of bed and make my morning pour-over.

training-barbell-muscles-hands-39613

Most who are remotely familiar with chronic pain have heard of the spoon theory – it’s a metaphor that describes daily life with chronic illness. Spoons represent the amount of energy one has to get through the day, and these “spoons” can only be replenished with rest.  Someone with chronic pain may have far fewer spoons than the average person, or it might require a greater number to complete a basic daily activity.

I often pretend not to identify with this metaphor, mainly because of my stubborn, try and stop me mentality. I try to be careful not to overdo things, especially when I’m not feeling well, but I usually fight to will myself into having the energy to get things done, no matter the consequence. Deep down, I hate being labeled as chronically ill and it lights a fire within me to accomplish everything I have to get done, even if it takes everything out of me.

This whole theory plays an enormous role when it comes to fitness, and I think this is where I have finally learned to give my body the rest it so desperately needs.  As I write this, I know I’m supposed to be at the gym for the dynamic upper-body workout I had planned, but I’ve been glued to my couch since 8 o’clock this morning thanks to being gone 15 hours yesterday for a wedding. I could will myself, as I so often do, into changing into gym clothes and driving the three miles to my gym, but even so, I know how poorly today’s lift will go and how dejected I will feel afterward when I haven’t accomplished all I set out to do.

I always tell my personal training clients that no matter how much you don’t want to come to the gym, you’ll never regret it once you’re moving weight and getting those endorphins flowing. And I truly believe that. But I also know that when given the options of training with blinding pain and balance impairment, or taking medication that will tame my breakthrough pain but force me to stay home much of the day, I’m going to take an elective rest day and get myself better. 

I guess my whole point here is that we have to give ourselves permission to rest. I know I’m not the only “spoonie” out there who feels immense guilt when s/he can’t muster the strength to do something they want to or should be doing. But it’s so very important to acknowledge our pain and allow our bodies to take a break from climbing the mountain that is everyday life. And I suppose that’s why I’m writing a blog post for the first time in three years. Here is my official recognition that today I am too tired to go to the gym, and that’s okay. I know that by taking a lazy Sunday to recover, I’ll be able to go in after work tomorrow and have a far more productive lift.

So to all you spoonies out there trying to convince yourselves to push through exhaustion, pain, depression, or whatever you’re battling…know that, just for today, it’s okay if you yield, just enough to lay on the couch with some dark chocolate, coffee and Netflix. Take care of yourselves, and save that can-do attitude for the week ahead!

I Think I Might Actually be Good at This!

I Think I Might Actually be Good at This!

I’m sorry unapologetic that this has nothing to do with EDS, but I am so overjoyed right now that I can’t not talk about it.  A lot of this story won’t make sense if you don’t have experience with horses, but I urge you to read on because it has a great ending!

I taught a riding lesson tonight with a 14-year-old girl I’ve known for years but just began working with about a month ago.  She’s owned a large Haflinger pony for about two years, but as she’s a beginner rider and he’s only five years old they both have a lot of room for improvement.  She has also ridden only western until recently, but she and I agree that they are both happier riding english, which is why I am working with her.  

So far we’ve worked mainly on Hannah (name is changed), fixing her posture and leg position, balancing her in the saddle, softening her cues (i.e. not kicking him and tugging on the reins all the time), and working on her confidence.  And from lesson to lesson I see noticeable improvements!  

She is learning to keep her heels down and legs wrapped equally around his belly, she’s sitting up better and is trying to keep her elbows in.  But Sammy (the horse) is still young and not only does he have a lot of learning to do, but he tends to take advantage of Hannah’s inexperience.  

Tonight we began with softening Hannah’s focus so that she uses more of her peripheral vision.  The idea was both to help her relax and to make her more aware of her surroundings as she rides.  After that we did some sitting and posting trot on the rail, then moved onto riding some large circles.  Neither rider nor horse are very experienced with circles, and as Sammy is still fairly young and Hannah’s balance is not great, this is the first we’ve attempted them. 

I had her sit the trot during the circles so that she could have better balance and drive him forward through the circle with her seat.  The shapes were more of ovals, rectangles and other polygrams that sort of resembled a basic circle.  It takes a lot of practice to have the eye to ride a decent circle, so I helped her use the proportions of the arena to map out her circles, and they did get better.  

We alternated between railwork and circles, but at one corner of our work area Sammy decided he was going to stop and turn toward the other end of the arena, and there was no stopping him.  The first few times Hannah yanked on his mouth and got pretty frustrated, so I reminded her of the proper cues (outside leg, outside rein, and guide his head with an opening inside rein – I don’t know that this is the perfect way to do it, but it’s my interpretation) so that she could push him in the proper direction.  

Sammy continued to ignore her cues, which were admittedly lacking in confidence as he became more and more disobedient.  At this point Hannah was obviously upset by the situation, so when we put him on the rail and asked for a trot she was a little too harsh with her legs and he ended up bucking and taking off at the canter.  

She managed to get him slowed down in about 5 strides and stopped within 8 strides, of which I was very proud.  Unfortunately this really shook Hannah’s confidence and tears soon erupted.  I’ve been there and I totally understood what she was feeling in that moment.  Unfortunately, I rarely had someone there to help me work through it.  

I had her walk until she was calmed down a little and ended up getting on him myself.  We worked through it for the next 20 minutes or so until he rounded the problem corner without stopping or bullying me.

When Hannah got on again she was much more relaxed, which reflected in Sammy’s behavior.  It helped that I got on and made him do his job the right way, but when her patience and confidence returned I could see his back swing more freely and he became a much happier, more comfortable horse.  By the end of the lesson they rounded that corner at both the walk and trot without slowing and with no resistance from Sammy.  And, Hannah’s cues were much softer than they had been at the beginning of the lesson.  In a half hour he went from balking and pushing her around to listening quietly and doing exactly what he was asked to do.  

Image

This is me riding the handsome Sammy in a generation gap class at the 2013 Crawford County Fair.  

It’s hard to explain on a computer screen how this felt to witness, or what it meant to me and to Hannah.  I’ve never witnessed a transformation like this come from something I’ve done to help someone else.  I was so proud of Hannah for the way she came back from a very frightening and frustrating moment.  She went from tears and extreme anxiety to laughing and walking on a loose rein by the end of the lesson, and I’ve never seen her so happy on that horse.  

I think this is a lesson she and I will remember for a long time.  When I started out I was fairly confident that I could get both Hannah and Sammy in better shape for the county fair next summer, but I’m realizing that these lessons go so much deeper than just looking good on the horse.  I have no formal training in giving lessons, but thanks to having two AMAZING coaches in college (Sid and Allison, I love you!), I’ve learned so much that I can pass on to new riders like Hannah.  

I am so excited to see how Hannah and Sammy continue to transform, and the lessons Hannah is learning will reach far beyond riding horses.  I feel so privileged to take part in this journey.  

I need your help!!!

I need your help!!!

I’m competing in the Dr. Pepper Tuition Giveaway contest for a $10K scholarship!  If I receive 50 votes I’ll be eligible to submit a video for their $100,000 scholarship as well!

This is an incredible opportunity to pay for a large portion of my medical school tuition but I need your help!

Please visit my profile, read my story and send a vote my way!

 

If you’re a student yourself and would like to enter, go to http://www.drpeppertuition.com/ and post your own story!

New Category!

New Category!

I’ve decided that during this transition year I must keep up to date on the nutrition world in order to maintain the credibility of my bachelor’s degree.  What better way to do this than to blog about it?

Expect more posts in the future relating to the world of nutrition, including anything from the truth behind organic foods and GMOs to diabetes research studies and why fad diets don’t work!

30 Things: Invisible Illness Awareness Week

30 Things: Invisible Illness Awareness Week

So I know it’s already Tuesday night and I’m just now talking about Invisible Awareness week, but I’m a new blogger so give me a break!

Although I’m very open about my dealings with Ehlers-Danlos Syndrome, there is still so much about EDS that many of my friends, family and acquaintances don’t know. Tonight I will share this blog with my family and friends for the first time, and I hope that they will read this entry and leave with a better understanding of what an invisible illness is and perhaps who I am. Deep breath…here goes.

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW:

1. The illness I live with is: Ehlers-Danlos Syndrome

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: Mainly 2006, but somewhat before then as well.

4. The biggest adjustment I’ve had to make is: Pacing myself. I tend to jump headfirst into whatever I’m doing, be it a workout routine, a riding lesson, homework (OK maybe not so much homework), cleaning ad nauseam. I’ve had to learn to slow down, stretch, warm up, and take more steps in order to protect my joints and my sanity.

5. Most people assume: I’m perfectly healthy. To look at me you’d never guess I suffer from chronic pain. The most common response I get is a surprised “but you’re in such good shape!” But the reason I can function is because I work to stay in shape.

6. The hardest part about mornings is: Getting a move on. Waking up can be hard, especially when I’m having sleeping problems, but depending on what I did the day before, the weather, or if the stars align I often have a very slow start to the day until my body warms up. Again, I have to pace myself.

7. My favorite medical TV show is: House, M.D. For a while I thought I wanted to become a diagnostician because of that show. And honestly I still think I’d enjoy that…puzzles fascinate me. Conversely, shows like Dr. Oz and The Doctors just piss me off…I can tell you that no fad diet that lets you drop ten pounds in two days is either healthy or long-lasting, and I have a bachelor’s degree in Nutrition to back me up!

8. A gadget I couldn’t live without is: My TENS unit. I don’t use it every day, but sometimes it’s the only thing that calms down persistent spasms and relaxes sore muscles.

9. The hardest part about nights are: Waking up unable to fall back asleep because of pain. Nights can be so long….

10. Each day I take __ pills & vitamins: 8 pills in the morning and 3 at night, plus supplementary pain relievers as needed.

11. Regarding alternative treatments I: Fully believe in their ability to supplement and sometimes replace a traditional approach. Craniosacral therapy does wonders for my symptoms, and I only wish I could have it done more often. The key is finding balance between the traditional and the holistic, and tailoring that to your needs.

12. If I had to choose between an invisible illness or visible I would choose: I would never wish for anything other than what I have. I believe I was given this condition for a reason, and although I wouldn’t wish it on anyone, I’m glad I can use it to try to make a difference in the lives of others.

13. Regarding working and career: Right now I’m planning to substitute teach until I get into medical school. From there, I’m not 100% sure what’s going to happen. But I’m very passionate about medicine and fully believe that in spite of the pain and difficulties I’m going to face, I will survive medical school and become a successful D.O.

14. People would be surprised to know: I haven’t experienced painlessness in at least seven years, probably much longer. I honestly don’t remember what it feels like to be without pain. But I don’t let it stop me from lifting weights, riding horses (even jumping!) and keeping a positive attitude.

15. The hardest thing to accept about my new reality has been: Honestly, I don’t know what the one hardest thing is. There’s the fact that I have a 50% chance of passing my condition on to each of my children, but it’s not going to keep me from having kids. I guess EDS’s impact on my academic performance has been the hardest thing to stomach. That and the ignorance some people have when it comes to chronic pain.

16. Something I never thought I could do with my illness that I did was: Compete over fences for the Ohio State Hunt Seat Equestrian Team and qualify for regionals on the flat. Honestly I never even imagined I would ride in college, let alone be competitive!

17. The commercials about my illness: Don’t exist! Sadly, I doubt EDS will ever receive much positive publicity on television. Maybe the work I do here will help make up for that!

18. Something I really miss doing since I was diagnosed is: I don’t know, I’m so fortunate that I can still do most of the things I used to, even if it is to a lesser degree. I do I miss feeling fearless on a horse. It’s not a healthy thing to be over-confident, but I can no longer gallop full-speed through the fields around my house like I used to!

19. It was really hard to have to give up: Bitterness. On my About Me page I talk about the accident that brought my EDS to our attention. I have never blamed anyone for the accident, but the way I was treated for the next two years brought me a lot of emotional pain. Learning to let go of that was unbelievably difficult.

20. A new hobby I have taken up since my diagnosis is: Blogging! Duh, you say. I just figured having a way to both fill my need for venting and to help others with the condition, as well as potentially raise awareness, was a healthy thing!

21. If I could have one day of feeling normal again I would: Take my favorite OSU horse, Devil, out for a good long hack and do some cross-country jumping.

22. My illness has taught me: Perseverance, forgiveness, patience, empathy…this list could honestly go on forever. I struggled a lot the first few years I had symptoms, but I’ve been blessed with such kindness and grace from so many people that I have no doubt in my mind of the good in this world.

23. Want to know a secret? One thing people say that gets under my skin is: But you look so normal! Unless you’re suffering from an invisible illness you cannot understand how upsetting that innocent statement is.

24. But I love it when people: Give me a chance to explain the condition without giving me the “oh yeah I have back pain” or “my cousin is double-jointed” phrases. Almost everyone has back pain, I get it. That’s not what I’m here to talk about. I also love and cherish the relationships I have with my physiatrist, his PA, my physical therapist (she’s the best in the world!), the x-ray staff, and everyone else who has been there for physical therapy, spinal procedures and lots of tears.

25. My favorite motto, scripture, quote that gets me through tough times is: Jeremiah 29:11. I know it’s a little cliché and overused, but it has brought me a lot of comfort over the years. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

26. When someone is diagnosed I’d like to tell them: Keep moving. Be proactive. Find your weaknesses and work to overcome them. Most of all, do everything you can to stay positive. You can either watch this condition take over your life or you can do something, anything, everything, to fight it.

27. Something that has surprised me about living with an illness is: I’ve become a much more positive person. It is so easy to let something like chronic pain get ahold of you and suck the happiness and optimism out of your life, but I’ve done the opposite. I feel so lucky to be able to have such an outlook, and I’m sure I wouldn’t if it weren’t for the incredible support system I have.

28. The nicest thing someone did for me when I wasn’t feeling well was: OK this has nothing to do with EDS, but when I was in the 3rd or 4th grade I got chicken pox and our neighbor/dear family friend brought over brownies and a kit with tape and construction paper “pox” for me to tape on everyone else so I wouldn’t feel so bad!

29. I’m involved with Invisible Illness Week because: If we don’t share our experiences, how will others learn that these problems exist? And more importantly, I’ve been able to take at least some control of my condition, and by sharing that I hope to empower others who suffer to do the same.

30. The fact that you read this list makes me feel: Humbled. I want to say exposed in case any of my friends/family are reading this, because it’s one thing to share like this anonymously, but another to share such intimate thoughts with those you know. But I’m humbled that you think this matters enough that you’re still reading, and I’m hopeful you’ll share this so that someone else may learn from my experiences!