Updated: Jan 6, 2019
Since days before the new year, you've no doubt been inundated with the resolutions of the able-bodied. Losing weight, exercising more, working harder, playing harder, saving money, getting ahead...
Watching the flood of posts as someone with chronic pain, someone who can't work, who often struggles even to get out of bed- it's a bit odd.
I used to be a resolution maker. Before I got sick and the world went upside down on me, I made the same resolutions most people made. I spent years wishing I was thinner, smarter, wealthier- had a better job, had more friends, had a relationship. I resolved to exercise more, to eat better, to get ahead. And then I got sick. And resolutions for personal betterment shifted into longing for improvement. It stopped being about setting intentions and more about clinging to hopes.
I haven't set actual resolutions in some years. For one, my life has taken a track that diverges from most my age, and for another- well, looking back at years of frustration, it seemed to me that setting resolutions was simply pre-planning failure. So I stopped. This year though, reading post after post after post I started thinking about what I *would* resolve, if I were to take up that mantle again. What are the things I should strive for this year?
And I realized there are things, within my pain-limited life that I can aspire to do better.
1. I will recognize and respect my limitations, while listening to and honoring my body's signals.
2. I will rest when rest is needed. (Yes, even if I've just gotten up. Even if I haven't actually done anything yet).
3. I will require that others respect my limitations, and not feel ashamed for doing so.
4. I will be kind to myself.
5. I will allow myself my grief
That last one is probably the surprise on this list for most. But think about it. As people with chronic conditions, disabilities, pain, illnesses (invisible and visible) we are flooded with what I like to call, positivity porn. You see it especially vividly in the cancer community. The power of positive thinking! Think Positive! It could always be worse! I met a man with no shoes, feet, legs etc.etc.etc.
We're surrounded by demands to see the bright side, if not for our own good, well- then to avoid bringing down those around us. No one wants to see the depressed disabled girl moping about right?! That's not inspiring! And let's face it, that's what all of us disabled sickies are here for right? To inspire! :gag:
And I'm not saying don't find the silver lining. Find it, embrace it, find your joy and run with it (or limp or roll as the case may be). What I'm saying is there is a grief to being sick. There is a grief to being disabled. A grief to being in pain. And that is ok. It is ok to say, this sucks. To have a moment where you are stricken by your reality and you allow yourself to FEEL that.
In 2018 I already began embracing this and I plan to continue it in the new year. I live with constant, chronic, debilitating- often almost dehumanizing levels of pain. It has affected every aspect of my life. And though, for the most part, I find great joy and value in the things I am able to do and accomplish- every few months I will wake up and immediately be completely overwhelmed by the knowledge that this pain is never going to go away. That it is, in fact, going to get worse. Forever. Even at the age of 37, that's a lot to take in.
But where previously I would have plastered on a smile and ignored that pain, this year- I've done something new. I've given myself permission to grieve. To sit in those moments and allow my tears to fall, to yell into my pillow, to pull the covers over my head and sob heavy, hard, loud shaking cries. Because the fact is- it fucking sucks. And there is nothing wrong with acknowledging that. For me, these moments are now almost therapeutic. The unexpected catharsis of my life. Close friends and family can often hear it in my voice, and they've learned to give me both love and space. Time to mourn a little, room for a very small pity party- and the knowledge that in a day, or at worst- two, I'll be fine again. Back to my usual self, kicking ass, taking names, flying around in my chair and managing my new reality as best I can.
A few months ago at a regular doctor's appointment, I was having one of those moments. But as I had the money for the copay and the energy to get there- I wasn't about to cancel. I managed to stave off the despair until I sat in the exam room alone and waiting. But then, the tears welled over. I was exhausted, in pain, and suddenly- again- overwhelmed by this reality. Instead of fighting it, I cried. I was still crying when my doctor arrived, and I explained- I was just having a moment. They happen. Not often, but every now and then. And that in a day or two, I'd be fine again. It's just.. part of the cycle of this reality.
And true to form, by the next day- all was leveled out again. But part of the thing that keeps me from drowning in those moments is that when they come I allow myself to feel them. I allow myself to acknowledge that there is a grief to be had in this. And all that is accomplished by ignoring that grief and stuffing it down is to schedule a much bigger and much more dangerous breakdown for a later date.
There is health and healing in allowing yourself to grieve. Even when what you're grieving is your own life, your own sense of normalcy, your own daily condition.
And so, as the new year rings in- I wish you all the resolution of grief.
Because you are allowed to grieve, even when others would prefer you pop with positivity. YOU are living your daily existence, not them. And sometimes, that means honoring even your grief.
JANUARY'S FEATURED SHOPS
CAMPAIGN(S) OF THE MONTH:
Normally, each month, we feature 1-3 fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.
Jameson's Fight Against Cancer
Jon and I are currently facing the biggest battle I'm sure (I hope) we'll ever have to fight. Our precious 4 month old baby, our youngest son, Jameson, has been diagnosed with stage 4 Neuroblastoma. This has come as nothing short of a shock to us. Jameson has always been such a happy, easy baby. The EASIEST of our three for sure. He's always calm and content. He never presented any signs of anything being wrong. The only indicator I, as his mom, saw was a big tummy. And he's our chunky boy! But about a week before his 4 month check up (Oct. 4th), I started to wonder if maybe it was too big. I addressed this concern with our pediatrician at his check up and it was there after an x-ray we discovered his liver and spleen were enlarged, very enlarged. He had an ultrasound of his abdomen done the next morning and it was from that ultrasound that we discovered Jameson has three very large masses in his belly and they are cancer. This was beyond shocking and devastating news. Every parent's worst nightmare. We have been admitted to Children's hospital in Omaha since Monday morning. An MRI revealed his liver is currently taking up approximately 80% of his abdomen. We began our first round of chemo last night (Oct. 11th) and have a long road ahead of us. We need to shrink these tumors and chemo is our only option at this point. It is so hard watching my tiny baby's body be pumped full of this. I would take his place in a minute. I want to take all of this away from him, and it's killing me that I can't. I would give anything to not be in the situation we are right now. We have 3 kids Jonathan (7) Regan (4) and our baby boy Jameson. Our daughter, Regan, has many special medical needs herself. She survived a stroke in utero and has left Hemiplegic Cerebral Palsy. She needs orthotics, glasses, weekly therapies, specialty doctor visits. She has an amazing life and is such a hard worker because of all of this. We only have private insurance through my husband's work, and while he gets great coverage, the financial burden of her needs alone is heavy. I am currently a SAHM with plenty to do between taking care of Jameson, getting the older two to and from school and activities, doing all of Regan's appointments and therapies, taking care of our home, etc. So we are a one income family. And while we have been getting by just fine, Jameson's diagnosis has been absolutely devastating in every way imaginable, including financially. We have had many people who love our family and want to support us during this time, ask how they can help. That is why I'm here, asking for help. We need positive thoughts, prayers, healing vibes for Jameson. As well as thoughts, and prayers for his brother Jonathan and his sister Regan. And we also need any financial help available at the moment. Jon has had to take more time off than expected even in just this first week of treatment to not only take care of our oldest two, and keep them in their normal routine, but also to come to the hospital to be educated on everything that goes into caring for a baby going through chemotherapy. (Which is a lot.)
We are forever grateful for the support system we are blessed with. We are surrounded by people who truly love and care about us and we need it now more than ever, and will never forget how loved we are. If you aren't able to give, please share our story and keep our family in your thoughts. ❤️ Thank you so much.
Bella has been extremely sick for the last 5 years with a mystery autoimmune disease that no doctor has been able to properly diagnose. Her husband Brett, a Navy veteran, had to come home from deployment to be Bella’s care-giver 24/7, and now neither of them can work. Their 5 year old daughter has severe, non-verbal autism so Brett is caring for her also while trying to keep Bella stable and managing all of her meds and Dr/ER visits. After years of exhaustive testing and countless stays at Cleveland Clinic, they have been told they need to go to the Mayo Clinic for further evaluation and treatment. The problem is, Bella is too sick to fly. She is on constant IV meds and cannot sit upright or stand for long periods without her heart crashing. Therefore, they have been told to find a way to get an RV to drive from Ohio to the Mayo Clinic in MN. Our mission is to help them raise the funds buy a used RV so they can make the 10+ hour journey. They have also been told they are going to lose their house in the next few months and plan to live out of this RV until they can get back on their feet. Their whole story can be read on their blog. I share this in the hopes that you might be inclined to help. They have sold practically everything they own and are struggling to survive both literally and financially. This man who once served his country is now fighting to keep his wife alive and get her the help she so desperately needs.
Help Elce Manage Their Pain
My name is Elce, i've been dealing with debilitating chronic pain from Fibromyalgia, small fiber neuropathy, brain degeneration and a multitude of spinal injuries for 10 years and have struggled the find means of affording consistent pain management treatment with my current income.
I work full time and it leaves me with enough money to pay for rent, food, my bills and possibly one or two acupuncture treatments if i'm lucky. Working full time is wearing heavily on my body and causing even more pain effecting my quality of life drastically. I lay down virtually every second that i'm not @ my job and never seem to recover from over exerting myself. This effects my social life and relationships and in turn my desire to live.
I'm realizing that in order to get the pain management I require to continue living without everyday being a battle I need financial assistance so i'm reaching out to my community for help.
The majority of my pain stems from my connective tissue and ligaments being ROCK hard and manual therapies have been the most successful in softening my body and helping me to regain mobility.
Here is a list of the treatments that help me that i'd like to be able to receive regularly and their costs:
Rolfing: $180 (the most helpful out of all the available treatments) Myofascial Release: $150 Deep Tissue Massage: $120 Acupuncture: $40 Co Pay's for western doctors: $80-$200 a month Car's to treatments when my mobility is low $100 a month
I'm currently working towards being able to receive Rolfing weekly for 12 weeks as I've already noticed a difference in how far my fingers can uncurl/my posture from just one session.
I put the costs of other treatments above but these things won't be as regular as Rolfing - maybe monthly if possible.
The financial goal on this fundraiser may change - since I am chronically ill my treatment doesn't really have an end date, and there is always more work to be done for my body.
Thanks for taking the time to read this, please share this with your friends and family and circulate it on your social media.
Hope for Healing: Endometriosis Excision
I have endometriosis. It's a disease that not many people understand. Endometriosis is not a bad period. It is lesions that grow outside of the uterus on other body structures and cause bleeding, pain, and inflammation.
These lesions can also cause organs to stick together or to stick to your pelvic wall. The inflammation can cause fatigue. The constant and unpredictable pain can cause depression and complex PTSD. The disease can take over your life.
I started having symptoms at age 11. I was not formally diagnosed until last year at the age of 27 with a diagnostic laparoscopy. I saw countless doctors over those 16 years for the acute issue of pelvic pain, as well a myriad of related symptoms.
Traditional Western doctors, naturopaths, massage therapists, counselors, and acupuncturists worked with me. I had many tests that showed nothing (I didn't know that an ultrasound or MRI wouldn't generally show endometriosis), I was given plenty of pills and vitamin protocols, and I was told a few times that the pain was normal (just a period) or that it was all in my head and if maybe I stopped thinking about it then it would get better.
When I was younger, I loved school. I couldn't get enough of it. Reading was my favorite subject and in 2nd grade I even convinced my teacher to let me help her grade papers instead of going to recess. In 6th grade, when my symptoms began I started missing school. I just couldn't go.
I missed school because I was in so much pain and also because I was bleeding so heavily that I couldn't make it through a class period without getting blood on my clothes. Waking up in the morning and trying to make it to the bathroom without getting blood on my bed, my pajamas, and the floor was impossible. Cleaning up large amounts of my own blood became normal. At 11 years old.
Having my surgery last year was exciting for me. I thought it would change my life. The idea that I could live without pain was thrilling. And for a couple months afterward I had very little pain. I attributed the pain that I did still have to "healing." But then it kept getting worse.
I was devastated. My dream to be able to live my life again was not coming true and I had spent over $6,600 to try and make it happen. And that was on the surgery alone, not all the appointments and treatments I had tried previously. I'm still paying on that failed surgery and will be for another year and a half.
Soon I will be having a second surgery with one of the best specialists in the country. I am confident in her ability to actually give me my quality of life back. I will be having excision of my endometriosis, which is where the endometriosis lesions are cut out instead of just having the surface burned off like in my previous ablation surgery. I will also be having a presacral neurectomy, which is the severing of some of the nerves leading to my uterus.
I can't wait to feel less pain and fatigue. I can't wait to be less alienated by my peers because they just can't understand chronic illness and why I'm not "better yet." I can't to have hope that I will be able to have a family of my own in the future.
I appreciate everyone who is able to donate towards my second surgery. It will hopefully be my last. Endometriosis isn't a well known disease, but it affects one in 10 women. When I am able, I want to help educate others about endometriosis. Thank you for helping give me that chance.
If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!