Life is about more than cookies and doughnuts. It is about hope. Positivity. Friends.
Life is full of things. Big things. Little things. Job things. And even cat things. Life can always use more cat things.
This is a story about one of those things.
The big thing. In my reality, it is the one thing. The sick thing.
Sometimes, the fact that I am sick comes out to play. But, more often than not, it seems to catch people by surprise.
I am not the kind of sick that has treatments that cause the loss of hair. I am not the kind of sick where my disease will shorten my life expectancy. I am not the kind of sick that will get you sick (as long as you don’t count this nasty cold that I have just about kicked).
And maybe sick is not the right word. Disabled isn’t any more accurate.
But I promised I was going to fight harder this year. So I am doing ketamine infusions.
And while I spend today in a hospital room, IVs beeping, a resident hovering and the groan of the blood pressure cuff as it auto-inflates every five minutes, I want you to see.
I want to come out of hiding. Sure, I’ve told you I am sick before, that one time I had to defend myself and my decision to use Western medicine as my main form of treatment.
I have never read so many kind words.
So, I thought I ought to follow it up. Since Rare Disease Day is next week. And since I am a rare bird. And my since disease wears an invisibility cloak.
People who I don’t get to see often will comment about how good I look. About how I must be doing better.
But here’s the rub. I’m not. And I may never be. This baby is rare. And it hurts like hell.
Thinking hurts. Being hurts.
Raging, burning, searing pain. Pain that is worse than getting a finger chopped off.
And there is nothing they can do. Well, other than feed me some hallucinogenic drugs after they turned me into a robot. I need you to understand the level of pain I feel on a good day.
Here, dear friends, is where this story begins.
I have lived without real hope of living pain free for a while now. We are working on getting the rapid and vicious swings under control. Implementing coping strategies. Finding a way to live a life that is as close to what other single ladies my age are doing is incredibly important. Things like last weekend’s outings with my gluten-free friends prove life goes on.
But this isn’t about that. It is about an argument I recently had with a friend. An argument about how I shouldn’t bother to hope anymore. Particularly since all we can do is manage some symptoms. I am living without a cure.
You read that right. He said hope was a waste of energy. And on some level, I can agree. Sitting at home, wallowing and wishing is a waste of energy.
I thought maybe we just have a fundamental difference of opinion about the definition of hope. But our argument made me think a rereading of Webster’s definition wouldn’t solve our inability to see eye to eye on this.
No. He really, truly thinks that hoping, believing that there is something better is worthless.
I just can’t go there. Five years ago they told me I might never walk again. I ran a 5k. I sure showed them.
Two and a half years ago, I was given a diagnosis for the knee injury that wouldn’t stop hurting long after the tendons had healed and strength had been recovered. Every treatment option has given me something to look forward to. There was Brutus the interthecal drug pump that I carried around in a giant purse. There was the lidocaine patches. And the sympathetic nerve blocks. And trips to shrinks.
I have made it this far because I have hope. (And an amazing support system of friends and family who give me something to hope for).
Not delusions. Just hope. Because if I don’t hope that this treatment will help, why bother even trying? And if I don’t bother, what is to keep me from utter despair?
Yes, I am sick. And yes, it really effing stinks. But I refuse to be a shell of a person.
I refuse to be defined by the ski trips I can’t enjoy. Or the special rides through the air port on one of those little carts.
I am going to keep finding ways to live my life like your average getting close to thirty single lady.
I am going to surround myself with friends and family.
I refuse to let my disease define me.
This is how I hope. By fighting. And by believing I have something to fight for.
The whole point here, is that there is no reason to give up hope. No matter how black the day. No matter how much you want to just fade away. No matter how much you would do anything to stop the pain. To make it all just go away.
I know how it feels. When the tears come at night because no one understands. When journal articles and research studies show no promise of a cure. When cutting off your leg seems like a sensible solution (FYI it isn’t. Apparently the pain would stay).
You, dear friend are not alone. Whether your affliction shows up on a list of rare diseases or it touches 1 in 3 women (heart disease!), there is hope. And if there is hope, you can be assured you are not walking forward alone.
Sure, it is going to be tough. It is what you are going to do to survive. And you are going to hope (and work towards) more than merely surviving.
That is what the hope is for. Reminding yourself of the possibility of better.
Sometimes, when I start to falter, I turn to cupcakes. And while they are an excellent form of therapy, sometimes it takes a real soul soother. Soup. But not just any soup. Hearty, flavorful soup. The kind of soup that reminds you of the joys of eating.
- 2 carrots, peeled and roughly sliced
- 2 stalks celery, sliced
- 2 medium onions, roughly chopped
- 2 cloves of garlic, minced
- 2 tbsp butter
- 6 cups chicken stock
- 10 ounces red lentils
- a thumb-sized piece of fresh root ginger, peeled and sliced
- 1 tablespoon tomato paste
- 7 ounces spinach, cleaned and torn
- sea salt and black pepper to taste
- Melt the butter in a large pot, add the onions, carrots, celery, tomato paste and garlic until the carrots have softened and the onion is translucent.
- Add the stock to the pot, then add the lentils and ginger.
- Stir the soup and bring to a boil. Once boiling, reduce heat to a simmer. Put lid on for 10 minutes or until the lentils are cooked.
- Add spinach and cook for 30 seconds.
- Season well with salt and pepper.
On Thursday, February 28th, let’s take a stand for rare diseases. The awareness color for CRPS is orange, and I will be wearing it to show support. Will you join me?
You are an inspiration. And that friend needs to be an ex-friend if he does not believe in the power of hope. Keep fighting and know that you have people in your corner, hoping right along with you. And lets do dinner soon.
Thank you! And yes!
Let’s go in a ‘ski trip’. But instead of spending money on lift tickets and ski rentals, we’ll just drink spiked hot chocolate by the fire instead. 🙂
And I have no words for this “friend.” Other than it really must suck to be them sometimes.
I like that plan!
And surprisingly, I hear stuff like that all the time, it is just harder when it comes from a friend.
Sniff, sniff. I love you big time, Mary Fran. You’ve got this….and when you think you don’t, we’ve got your back. xo
<3
Thank you!
(and I miss you!)
Thank you for this post. I, too, have a rare disease (shout out to us NORD-ies!) but I’ve never written about it on my blog because I didn’t feel like it was really relevant to my blog topic/content. But then I told you last night on Twitter that it’s “your blog, your content, your choice”… So I guess I’m planning a personal post on my blog for February 28 now. 🙂
I can’t to read yours!
It is hard to know just how much of myself to put into this site sometimes, but I always find that when I share it feels like the right decision!
Thank you for your inspiring words and sharing your thoughts with so many. I am happy you and Candice are able to share your glutenfree recipes and stories. I truly wish you didn’t have to share your RSD/CRPS stories with each other. I DO HOPE AND PRAY you and Candice will find a way to live painfree!!!!! We need to HOPE AND PRAY for this!!!! Thank you for all the support you have given to her. I wish you all the best!
Lynn – I hate what Candice and I have in common too, but she is an incredible young woman and I am so very lucky that I have had the chance to get to know her and her story!
I was directed to this post + I’m so thankful I found it. I may not know exactly what you’re going though, but last June I was in a serious car wreck where I broke my back + it caused spinal cord damage. Along with that came paralysis + daily pain. Some days are better than others + I refuse to take any sort of pain killers.
I know how you feel when people make rude comments like that. It’s so sick to think that people think because i’m “handicap” that I serve no purpose in life.. and yes, people have said that before.
All I can do it pray + ask God to give me the right direction in life. I will keep you in my prayers, too.
God bless.
I am so sorry to hear about your accident! Cars can cause one heck of a lot of damage.
Stay strong and know you have purpose!
Big hugs!
I’m sorry you’re in so much pain all the time, I never realized the actual extent of it. I’m generally in pain all the time, too, but apparently no where near to that degree, so I really shouldn’t complain about it, eh?
Pain affects us all differently. And being in pain all the time, no matter the severity, isn’t something to compare. Our struggles are very different, and my journey does not invalidate your pain. If it hurts, speak up! Your pain is real!
I hope very much that you can find answers and relief for yours!
I hate that you are in pain all the time, and I hate that people say silly things like that to you. (I also hate that you choose a picture in which yes, you look adorable and lovely, but I look hungover as death. 🙂 ) You should always have hope! It is a beautiful thing. And you know that, nine times out of ten, I am available for late night phone calls and tears.
You look just fine silly lady! I miss you, and I do owe you a call. Hopefully one without tears, although it might have to wait a couple of days so I can process what the doc said yesterday.
You need a ski weekend in a chalet, rugged up around a roaring fire with schnapps, and some excellent board games!
That sounds like exactly what I need!
Oh my gosh. I don’t know what you have, but I’m sorry. And I suffer from fibromyalgia and chronic fatigue syndrome which there is also NO CURE for, and is chronic, but so far not fatal. This post resonates with me more than you could EVER possibly know. This is inspiring me to write a post like this. THANK YOU.
Glad you wrote an update 🙂 Enjoyed seeing your facing smile in so many bloggers recap of the GFAF expo 🙂 My family wore their jeans to support Rare Disease day 🙂 PS, your recipe looks awesome! 🙂
Cindy
Thanks for your support!
You give me hope!!!!!
Remember there is always hope!
I’m amazed by your strength and perseverance.
On a lighter note, I loved your soup recipe as well and linked to it on my recent post for tasty fall soups.
Have a great week!
Beautiful words. Scrumptious recipe. Amazing woman. I agree with you; hope means life. God bless.
Thank you for stopping by!
You may have already checked this out but just thought I would mention it. My husband had surgery on his rt. hand 6 yrs. ago and it didn’t go well. It was thought that he had developed CRPS/RSD. In my research to find out anything that might help him, I came across research that showed that Hyperbaric Oxygen treatments had shown some success in treating CRPS/RSD. I spoke with a technician that handles the Hyperbaric Oxygen treatments at a local clinic and he confirmed that they had had some success in that area also. Thankfully for him his diagnosis was wrong. He still has many problems with that hand and chronic pain but it isn’t to the level of CRPS/RSD. Just thought I would pass this info along. Thank you for sharing with us about your life. Hopefully, many people will be encouraged by reading this article.