It’s Only One Day, (But You’re a Superhero!!)

Thinking about things like upcoming holiday gatherings with large crowds of people can bring on anxiety for people who don’t even usually have anxiety issues. Face it, the holidays are stressful. When you have bowel troubles, being in crowds, coupled with food to which you simply cannot say no, and a sketchy or unknown bathroom situation can make the already “standard level anxiety” explode into a world of unknown possibilities that would make Willy Wonka’s world of pure imagination seem dull. I spend the holidays with Crohn’s disease and anxiety together, and it always makes me wonder if I am on Santa’s naughty list. I seriously wish I would just get a lump of coal instead.

I spend the holidays with Crohn's disease and anxiety together, and it always makes me wonder if I am on Santa's naughty list. I seriously wish I would just get a lump of coal instead.

Christmas Before Chrohn’s Disease

When I was a little girl, we always spent the holidays at my grandparents’ house. It was a huge, old, three-story home, complete with a creepy basement. There were lots of wooden pillars between each room and a beautiful wood and marble tiled hearth, with a mirror around the fireplace. The stairway was located down the hallway between the family and living rooms. The stairway “secret passageway”, as I remember calling it, mysteriously somehow led into the kitchen, the basement, and the upstairs area where the bedrooms were, all behind the same magical door.

The bathroom was upstairs, also. The one bathroom. The one bathroom in the whole great big house. The one bathroom that all of us, and there were over fifty people, had to use when we gathered for the holidays at Grandma and Grandpa’s house. There was even a little couch on the landing area just up the stairs that sat outside the bathroom, because you were inevitably going to have to wait for it to be your turn. As a child, this didn’t bother me at all. I used the time to explore the upstairs bedrooms and look around at all of the things I wasn’t allowed to touch. I was particularly interested in my Grandpa’s ship in a bottle – I still don’t know how that thing got in there!!

Crohn's Disease child adult focus chronic illnes holiday strategies

Christmas with Crohn’s Disease

Now, if I had to go to a one bathroom house for any kind of get together, I would panic. There is no way I would be able to negotiate any kind of celebration with that many people and only one bathroom. Even if there is a super comfy couch to sit on and wait my turn. Because of Crohn’s disease, I can’t wait. When I have to go, I have to go immediately. And the thought of just being somewhere that I don’t have immediate access to restroom facilities creates a level of anxiety that freezes me in my tracks and keeps me from doing so many of the things I want to do. Even if the people are family and understand my situation, it doesn’t make the anxiety stop – not even a little bit. It does make me wish I just got a lump of coal instead, though.

Holidays & Social Anxiety

The feelings of “what if this,” or “what if that,” happens regarding my bowel issues are one thing – and a horrifying thing at that. But then there is the social anxiety that I have to contend with on top of bathroom anxiety. I don’t like large crowds. I don’t like loud noises, especially sudden or startling noises. I don’t like to hear small children or babies crying uncontrollably. It is very difficult for me to make small talk, even if it is with people I know and genuinely enjoy being around. It’s actually terrifying for me. And I cannot explain what it is, or why it is, in any way that makes sense to someone who has never felt this way. It’s just emotionally and physically painful. I always try to fend off these feelings with humor and sarcasm, laughing so I don’t appear so uncomfortable. But deep down, I’m in very real agony. I’ll take that lump of coal now instead, please.

Crohn's Disease social anxiety family stress Holiday strategy

A lot of people say they get it. I often hear, “I understand, I don’t like crowds either,” “I don’t like loud noises,” or “The screaming kids get on my nerves too.” No, that’s not exactly it, but I appreciate the sentiment – sort of. Other times I’m met with a downright denial of my feelings altogether, “It’s just one day, you can get through it.” I honestly wish it were that easy.

Anxiety around the holidays for me is two-fold because not only do I fight with the anxiety of being around a lot of people, I am also fighting the fears about the bathroom situation at any given time. It’s been years since we all gathered in the one bathroom home of my Grandparents. My family gets together now in places with multiple bathrooms, which helps ease that problem just a little, but bathroom anxiety never truly goes away when you have bowel problems.

Well-meaning Relatives…

There is always that kid that pounds on the bathroom door even though they just saw you go in there. There is always that super overly concerned, but well-meaning relative that asks you if you are okay all three times they see you come out of the bathroom. There is the other relative who automatically knows how you feel and tries to empathize with you because they have a lactose issue or a spastic colon. So they have to make a huge deal about how alike the two of you are – usually loudly and in front of everyone – doling out the same ridiculous advice they give you every year that is sure to “cure” all your problems. And then there is the jokester, who tries to make fun of you going to the bathroom again and again. Even though they are trying to be funny to make you feel less self-conscious, they always end up making you feel worse. But hey, it’s only one day. It takes several weeks to mentally prepare and four days to recover from that one day, but, it’s only one day. Lump. Of. Coal. Please

There is always that super overly concerned, but well-meaning relative that asks you if you are okay all three times they see you come out of the bathroom.

Not Just One Day

For me, and so many like me with anxiety, it isn’t just one day. It isn’t just one hour. It isn’t just sucking it up and doing something you don’t want to do like emptying the cat litter or getting that pesky flu shot. It is literally all the days leading up to that one day. It’s the fret and worrying and concern and overthinking that is involved in mentally trying to prepare for every possible scenario that might occur in that one day. It’s also knowing you will never be fully prepared enough, so you start freaking out about that. Then it’s the actual event itself, which is almost never as bad as it seemed like it was going to be all the days, weeks, or sometimes months before that you worried about it. Except, even knowing that doesn’t ever stop the pre-worry. It doesn’t end there, though.

It’s also all the days after the events suffering from extreme exhaustion and the need to come down from the high levels of stress and anxiety and all the interactions with other people. The physical fatigue and genuine body pain from having to endure such a distressing ordeal, coupled with the havoc that it all wreaked in my gut, puts me out for days afterward – even if it is just having dinner with my family at Christmas. It’s all of those days and it’s exhausting. I feel that anyone who has to deal with chronic illness in any form, on top of the normal holiday stress, deserves superhero status and a sweet cape.

I feel that anyone who has to deal with chronic illness in any form, on top of the normal holiday stress, deserves superhero status and a sweet cape.

It’s not about not wanting to be around my family. I desperately want to be around them because I rarely see them. I desperately want to spend time laughing and eating and having a good time enjoying the holidays, or any other celebration, without a care or second thought about anything – just like I did at my grandparents’ house when I was little. But now, anxiety happens. I can do my best to control it, I can take my medication, I can do my self-care, and I can be funny and pretend I’m okay. But the bottom line is the anxiety is still there. The irrational fear is still there. The “what if’s” are still there. I get that, technically, it is just one day – except it isn’t. I do understand what is happening. I even have insight into how illogical it is. That doesn’t make it stop, though. I wish it were as simple as being able to tell myself that it’s just one day and I’ll get through it. Seriously, where is that lump of coal instead?

This, my friends, is what makes people with chronic illnesses so very special. We really are superheroes. Everyday superheroes endure these kinds of situations, mostly silently, and we do it well. We’ve done it for years and we will continue to do it because that’s what superheroes do. That, and we don’t really have a choice. So let’s go don our invisible capes and get through our holidays and remember, that when it’s all over, we don’t have to do it again for a whole entire year! Now, isn’t that more fun than just getting a lump of coal? Eh, I’m still not sure. Happy Holidays!

About The Author

March 9, 2019November 24, 2019

The Internal Struggles We Face with Multiple Chronic Illnesses.

Chronic illness is like eating potato chips – you can never have just one. At least that’s true for me. I was diagnosed with Crohn’s Disease in 1995 and since then I have had an avalanche of multiple other chronic illness diagnoses. From Depression and Anxiety to Fibromyalgia and Bile Salt Malabsorption to Irritable Bowel Syndrome and Insomnia. I think the chronic nausea and diarrhea are there just for fun. I might have even missed a few, but you get the idea. I have a gamut of chronic nonsense happening writhing my body.

The Day to Day: What will flare and what won’t?!

Sometimes everything can remain in check. My bowels remain relatively calm and only give me somewhat minor issues. My depression and anxiety are held at bay with more positive things that might be occurring in my life. My insomnia gets tired and finally goes to sleep so I can rest. And I can sometimes even manage to move just enough, or just little enough, that my Fibromyalgia is mostly quiet and I don’t hurt as much as I usually do. Though these moments are super rare, they do occasionally happen. It’s never for long and never, ever predictable, but the moments do occur. And in those moments I feel like what I imagine a healthy person feels like; or at least someone less like myself.

Then there are the days when everything works against each other to cause complete and total anarchy in my body and brain. A typical day like that is one of the toughest because I’m not only fighting one of my chronic illnesses, I’m fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It’s like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.

I'm not only fighting one of my chronic illnesses, I'm fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It's like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.

Inside My Mind and Body with Chronic Illness

Follow me down this rabbit hole of chronic illness overload to experience what my body goes through, and how it talks to itself.

It usually starts in the early hours of the morning between 4:00am and 6:00am.

Brain: “Wake up!”

Anxiety: “Hey remember that feeling you get in the pit of your stomach when you’re going down a roller coaster? That weird adrenaline rush feeling? Here you go. Do you feel it?”

Stomach: “Ahh! What the heck??!!”

Body: “Please, I’m tired. Let’s sleep. Nothing is going on. I’m safe. I’m warm. I’m okay. Just sleep. Please.”

Anxiety: “Nope. We have things to worry about.”

Body: “Don’t wanna. Wanna sleep.” Tries to roll over but realizes it hurts. Elbows and wrists are stiff and achy. Legs feel heavy.

Brain: “Nope. Not happening.”

Bowels: “Hey, guess what’s up? I am! And I gotta go. NOW!”

Brain: “Can’t we ignore you, bowels? You never play fair.”

Bowels: “No way – gotta go – NOW!”

Body: Manages to sit up. “Ouch, my back!”

Body: “Must to run to the bathroom.” Quickly realizes everything hurts. Screams silently from every muscle and joint but knows we must make it to the bathroom or we’ll have an accident. Curses bowels.

Bowels: “We’re done. For now. Heh, heh.”

Body: “Please let’s go back to sleep now. Everything hurts.” Manages to lay back in bed and get covers on top of me.

Brain: “You can try but it isn’t going to work. I’m getting cranky.”

Anxiety: “Remember that thing that you said but you should have said this instead? Let’s think about that and replay the conversation twelve different ways over and over even though we know it will never happen. C’mon, it’ll be fun!”

Brain: “No, that’s dumb. Don’t think about anything. Just lay here and be quiet.”

Body: “Yes! Let’s sleep more.”

Bowels: “NO! Let’s go again!”

Body: I’m so tired. I hurt so bad. Okay, I guess we’re doing this. Throws covers off and runs to the bathroom again.

Brain: “Maybe I am tired now. But now I hurt. I’m going to ache and throb now.”

Depression: “I hate everything. I wish we could just hide under the covers and never get out of bed again. Like, ever.”

Body: Drags self back to bed. Attempts to get comfortable.

Stomach: “Hello? Yes, I still hurt. I’m still here. Here’s a bad cramp because I’m feeling left out.”

Anxiety: “What if…”

Brain: Throb, throb, throb.

Body: “Drink water. I need water. I’m dehydrated. Get up and get water.”

Stomach: “Don’t do it. I’ll reject any sort of hydration or nutrition you give me.”

Bowels: “If Stomach doesn’t reject it I will. Oh hey, let’s go AGAIN!”

Body: “Ugh!” Runs to bathroom again. “I’m so tired. I just want to lay down on the floor. That bathroom rug looks comfortable. Let’s lay down.”

Brain: “That floor is going to hurt so bad. You might get down there but how are you going to get back up?” Throb, throb.

Bowels: “Oh we’ll make sure she gets up. Heh, heh.”

Body: “Fine, forget the floor. I’ll go to bed.” Finally gets back to the bed and gets somewhat comfortable. “Why do I hurt so bad? I did nothing yesterday that would cause this pain. I need a hot shower. Hey Bowels, how long until the next …. oh!” Runs to the bathroom again.

Bowels: “Yeah, we’re doing this every fifteen minutes. No shower for you today!”

Body: “Meh, I’m too tired to shower now anyway.”

Brain: “What time is it now?” Throb, throb. “Oh, we’ve only been awake an hour? It’s going to be a long, bad day.” Throb, throb, throb.

Depression: “I’m so tired of this. No one possibly understands how bad this is. No one cares. This isn’t living. This is terrible. If we lay here still enough can we just stop breathing?”

Anxiety: “But what about all the things you need to do? What about all the things you have done? Let’s stop and reassess everything in your life right now. Hey, remember that time in third grade when…”

Brain: Throb, throb, “No please, no. Just everyone shut up! I’m hurting.” Throb, throb, throb.

Body: “Hey, I’ve been hurting and just want to sleep but no one is listening to me!”

Inside my mind and body with multiple chronic illnesses. Sometimes all I want to do is sleep!

Stomach: “I don’t feel so good either. Brain pain is making me feel sick. I think might throw up.”

Body: “Oh no, I cannot handle retching right now. It’s going to hurt so bad and it already feels like someone took a baseball bat to my back. Let’s try to lay back down.”

Bowels: “Haha! No!”

And so on and so forth throughout the day as the never ending cycle of what happens when all my chronic illnesses come together and work as one, slowly feeding off of each other in another attempt to destroy me. It’s excruciating and it’s exhausting. But somehow, every single time I make it through. These days are the worst, and even though at the time when my body is continually arguing with itself, I somehow always know that I will make it through. The next day might not be so bad, or the day after that. So I hang on, just one more day. Because eventually, I will get one of those good days where all my chronic illnesses play nice with each other. And those are the best days.

Jenni Lock is the creator of Jenni’s Guts blog and writes about her journey with intestinal nonsense and other chronic health issues. Her sense of humor, sarcasm, and willingness to talk about the things most people just think are all part of her charm. Jenni is a nurse, however is unable to work due to struggling with Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea, Fibromyalgia, Anxiety, Depression, Insomnia and PTSD. Learn more about Jenni and her guts at http://JennisGuts.blogspot.com.

July 5, 2018June 21, 2019

Chronic Illness Means Taking One Day at a Time

Life Altered by Multiple Chronic Illness Diagnosis

Chronic illness has completely altered my life. I went from a two sport varsity athlete in high school to a person who functions at a pain level that would leave most people bedridden. Now life has been consumed by handfuls of pills twice a day, at least one doctor’s appointment a week, constant pain, exhaustion, and more difficulties. After struggling for over a year to get an accurate diagnosis I finally ended up with several: Rheumatoid Arthritis, Sjogrens Syndrome, Graves’ Disease, Fibromyalgia, and Irritable Bowel Syndrome.

Seeking Sobriety and Answers

I can’t tell you when the pain started. I spent years as a full time heroin addict, and while I was using I wasn’t in pain. But every attempt to get sober left me in agony even after withdrawing from the drugs; which only lead to relapse after relapse. Every attempt at sobriety would lead me to a different doctor for an answer, but every doctor assumed it was Post Acute Withdrawal Syndrome. I knew in my heart there was something seriously wrong, but I couldn’t find anyone who believed me. Eventually I managed to get sober and continued my fight for an answer to my pain. Every doctor I saw just assumed I was looking for drugs, even when I told them I didn’t want any narcotics. I went from doctor to doctor looking for someone who believed me and would help me finding an answer. I finally found one, over a year after I began my search. A few months later I got my answer. It came with a laundry list of health problems.

Chronic Illness Diagnosis Too Much to Bare

A few weeks after getting diagnosed with fibromyalgia and rheumatoid arthritis I landed in a mental hospital for a suicide attempt. I was so overwhelmed by the idea of dealing with pain everyday for the rest of my life that I assumed I couldn’t do it. I didn’t really want to die, I later realized, I was just afraid of a life of constant pain. Fear is a completely overwhelming emotion and I was terrified thinking of the kind of life I was being forced to live.

Struggling to Stay in School

Throughout all of this I struggled my way through college. I am currently studying the prerequisites to get into the nursing program. Just this past semester I developed a serious infection that was sensitive to only five antibiotics. As it turned out I was allergic to four of them. I spent weeks covered in a rash because of constant allergic reactions. I ended up with a PICC line to take the final antibiotic that would work, which was only available as an IV antibiotic. It took three weeks on that medication to heal. Thankfully it worked and I was finally free of the infection. But throughout all of that keeping up with classes wasn’t possible and one had to be dropped.

Immunosuppressant Therapy for Chronic Illness

Once I was free of the infection I could start my treatment for the Rheumatoid Arthritis- it was an immunosuppressant. This medication, which is also used in chemotherapy, makes me sick for at least one day, usually two. Once I realized this fact my mental health took another turn for the worse. This time going to the hospital was not an option. It was only a few weeks away from finals and past the date to withdraw from the class. The doctor upped the antidepressant which caused suicidal thoughts. I decided that if the next change my doctor made didn’t help I would take my parents wrath and go to the hospital for help. Thankfully the change the doctor made worked. I was no longer suicidal. The depression remained as a hard consequence of chronic pain.

Looking for Positive Side of Chronic Illness

Everyday is a struggle to keep looking for the positive when it all feels negative. Sometimes I think the light at the end of the tunnel is just a train that’s going to hit me at full speed. And sometimes that is what it feels like. But I searched for a group of people who understand the kind of struggles I have. Thankfully I found a few and began to make friends with others who have similar challenges. I began to talk to my family members who also struggle with chronic illnesses. I created a beautiful new relationship with my mother who struggles with almost the exact same situations as me. Anyone can find help through The Unchargeables Chronic Illness Support Group.

Chronic Illness Self Care

I realized that I can’t look at my whole life at once but instead I now try to take it a day at a time and go easy on myself. I can’t control what may or may not happen in the future, but I can control what I do today. And today I choose to allow my doctors to attempt to put my body back together while I focus on what I can do to better myself. I do what’s put in front of me: run the errands, study, go to appointments, and on and on. When things get overwhelming I do some self-care. It’s hard for me to do self-care because I tend to forget about it with everything else going on. I love taking baths and writing poetry and that’s what I try to do as often as possible. Life is still hard, but every day I do something, even if all I can do that day is get dressed. I’m grateful that today I have people in my life who understand my struggles and love me through them.

About the Author

Chris Thoman is 23 years old, a college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. You can follow Chris on Instagram at https://www.instagram.com/foreverandalwaysarebel/

April 19, 2018April 19, 2018

How Marya Found Grace Through Chronic Illness

I’ve been diagnosed with cervical dystonia, a neurological movement disorder, since 2010. As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life including limiting my driving abilities, my capacity to work and to be able to take my son with special needs, to some of the extracurricular things I’d like to see him be able to participate in.

“As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life.”

I’ve been diagnosed with Irritable Bowel Syndrome for years and figured that every quirky GI symptom I’ve had was just the IBS acting up. But for the past few months the more distressing symptoms were intensifying and I was noting more blood in the toilet when I went to the bathroom.

As a special needs mom of three, one of whom is a heart patient, I’m pretty good at doing research. So naturally, I started Googling “Inflammatory Bowel Disease” and started to wonder if that was what was going on and scaring the daylights out of myself in the process.

Finally, I went to the gastro in January, who ordered a colonoscopy. I procrastinated about getting that procedure done for a few months and finally got that done in April of this year.

Well.

For some reason the prep didn’t seem to be going as well as previous times. When I came out of the procedure, the doctor told me that the prep was indeed poor, and that I had colitis but they’d have to do biopsies in order to confirm what type it was. The doctor didn’t think anything major like cancer was going on.

Afterwards we stopped for breakfast at one of our favorite places just like we’d done in the past. I ordered some food, but then I began feeling horribly nauseous and couldn’t eat. The nausea became overwhelming and then I lost consciousness in the restaurant in front of my husband. A retired law enforcement officer, he started trying to give me mouth to mouth right away. Luckily there were some medical personnel from the local hospital there too and they called an ambulance.

“I lost consciousness in the restaurant in front of my husband […] he started trying to give me mouth to mouth right away.”

I spent several hours on ER having vitals checked as well as an EKG. I was super nauseous for several hours and couldn’t go to the bathroom by myself for awhile. My vitals all checked out as normal, but every time I tried to stand up the nausea came back. They gave me some meds or that and when it finally seemed to be under control, I went home to rest.

The doctor told me that it didn’t matter what I ate, but again… special needs mom that I am, I question standard medical advice. Also, I’m pretty holistically-minded about everything. I knew about the Gaps diet and was able to source a few things immediately. Something about being told my colon was “oozing” was very motivating to get started right away!

I’ve already begun to see some slow improvement but I understand that this is a major lifestyle change. I’d already made lots of changes over the last couple of years including a 40 pound weight loss and a food plan that was comfortable for me. But now I’m having to make more changes. I miss my morning oatmeal, coffee, and other creature comforts that help to keep me sane.

“30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me.”

Checking in with my mindset about everything, although I complain about the food restrictions on the Gaps diet, I think I’ve handled it all relatively well. 30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me. For me this looks like daily devotions, meditation, yoga, and writing. A little dark humor and sarcasm goes a long way too. Unfortunately that list also used to include a good cup of coffee, but I guess that’s out for now until I’m more stable.

I’ve learned that my life’s journey is a marathon, not a sprint. Sometimes there’s going to be awful days. Situations that I’m totally powerless over. At times like these it’s perfectly okay to lay low and focus on what I need to.

At this point I haven’t had the follow up with the doctor or got the lab results back. Honestly, I am a little anxious about it after doing some research and seeing the the possible treatment options are, how invasive they might be, how much is this going to cost and how cooperative will my insurance company be?

“I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.”

But believe it or not, it isn’t consuming me like it might have at one time. I stay busy with my blog, my dogs and my self-care practices in order to stay grounded. I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.

Marya Mesa is a special needs mother who writes at www.ChronicMomLife.com about chronically sober living with faith, intention, & self care.

March 29, 2016

My story of Adenomyosis

Hi my name is Stacey, this is my story of life with adenomyosis. 18 months after having my second child(at 21 years old) I started getting heavy periods, not just the usual heavy, but to the point I was sitting on the toilet for half an hour as I was too heavy for sanitary towels or tampons, shooting pain during and after sex(with awful cramps) and spotting after sex too. I had scans and blood tests and nothing was showing up. I ended up having the mirena coil, then after A year my partner and I decided to have a 3rd child. After having our little boy, my periods seemed to never stop, I was heavily bleeding 21 days at a time with a 4-5 day break! The pains could throw me to the floor. I had a feeling it was endometriosis as I’ve heard so much about it. Anyway, after going for yet another scan they see that I had thickening of the uterus wall. Which led to my diagnosis of suspected Anenomyosis. The problem with Adenomyosis is that the only true diagnosis is a hysterectomy! You need a very good sonographer who is trained in what to look for to be able to diagnose this disease. Luckily 2nd time around I had one. I am currently on the mini pill and this is helping with my periods (now every two weeks at 5 days long but I’m happy with that after what I’ve been through!) but the pain is just as bad. I also have IBS which from what research shows is very common with Adenomyosis.

Adenomyosis was originally called Endometriosis interna which means endometriosis inside the uterus. The only issue with it being inside, is there is no cure other than hysterectomy. No way of getting rid of all or some the nasty symptoms the only choices are the pill, mirena coil and trailing injections. Being 23 I am not allowed to make that choice of a hysterectomy. Even with 3 children and deciding we have completed our little family. I am constantly tired, run down and in pain, but this is not enough for any surgeon to help me so young. This disease can start at early teens the start of your menstrual cycle or after you’ve had children or even surgery. Unfortunately not enough awareness or research is out there to say for definite what causes this. All we know is if you have this, you’re likely to have endometriosis too. I only know so much, I’m sure I have missed out an awful lot so please bare with me! I was diagnosed only a few months ago after years of hell, so still have a lot to learn. I just hope, I can raise awareness for this debilitating disease that ruins so many women’s lives.

February 26, 2016March 2, 2016

Spoonie Story: Heather

My name is Heather, and I am currently 30 years old. I suffer from Chronic Pelvic Pain, some chronic bilateral knee pain, IBS-C (C for constipation), migraines, and worst of all, Chiari Malformation. My Chiari is not formally diagnosed yet, but the MRI evidence and symptoms are there.

My Chronic Pelvic Pain started when I was still 26 and still Active Duty Army. No cause was ever found, despite extensive work-up. My knee pain also started in the Army while I was 22. My right knee has a partial ACL tear, and my left knee has some early degenerative arthritis, but that didn’t start until 2 years later. My IBS and migraines started in my teens. My Chiari symptoms likely started in the summer of 2013 when I was around 28 (my birthday is in the middle of summer).

My migraines weren’t responding to Excedrin as well as they did before, but it wasn’t until after I was medically retired in early 2014 that I had imaging done on my brain and the cerebellar tonsillar ectopia was found. They haven’t diagnosed is as Chiari Malfomation because most medical providers still go strictly by the old measurement criteria. I finally got my doctor to put in a referral for me to see a specific specialist, so hopefully I can find better treatment options.

I still try to do what I can despite my symptoms, including fun things like attending a Like A Storm concert last night. I knew what to do ahead of time so that I could enjoy the whole night… and yes, I do have a jar with spoons in it on one of my necklaces there. I also made a small poster for the concert last night too. Didn’t hold it up, as it was a small venue, plus I don’t care for too much extra attention, but I did at least get my husband to take a pic of me holding it up before the show.