An update, finally

Good evening, my dear family.

I’m sorry that I disappeared back into my shell. Sometimes, we all need to take some time to hide in ourselves to learn. To heal. To just let life be because sometimes it’s just too much. I feel like I finally found the “too much” in my life when I broke my wrist and everything that came after that.

This post will be real. I will hold nothing back and I’m going to close my eyes and let myself fully feel in order to give you guys the best of me right now. I apologize if I offend anyone — those aren’t my intentions. But I think that sometimes closing your eyes, to stop being such a picky editor about everything you write make the post honest. Blunt. Proof that we are still in this and fighting without holding back for the sake of anyone.

Since I broke my wrist, I had a lot of downtime. Happy to report that I’m out of the cast, things are moving (in the right direction, of course) but I’m still sore every day. The pain came become pretty unrelenting. An interesting parallel to those of us with fibro — my arm doesn’t like grossly broken anymore (I’ll spare you those pictures), but I can still feel the pain as my nerves try to balance themselves out. Yesterday, my hand (pinky and ring finger) were numb and tingly for almost 12 hours straight.

A couple of weeks ago, I was home with my family before my dad left to go back overseas for work and I walked the pups with mom one night. I’m not sure exactly what happened, but I was limping by the end of the walk. Two weeks later, when I finally decided that the excess swelling wasn’t healthy and that I was still in pain, I finally had my foot looked at. I tore the tendon on the top of my foot — I tore a freaking tendon while I was walking. The doctor I saw said it wasn’t bad enough for surgery, so he put me on Prednisone (dun dun DUN) and said it should heal itself once the prednisone allows the swelling to come out. For those of you who don’t know, the Hulk ain’t got shit on me when it comes to this steroid. I haven’t been on it for a long time, so as soon as that first dose hit my system, I think my eyes partially bugged out of my head and everyone knew what was coming. I’m irrational, I’m emotional, I’m mean and I feel like I have no control over it. I feel like I am truly fighting a demon inside of me that wants to be let out, but I know that if I start allowing the prednisone to win my emotional battle along with my physical battle — that it would lead to no recovery time because I don’t think I’d have anyone to recover with. I don’t not want to be a constantly angry person. I know what anger and misunderstandings look like and I don’t want to be that person.

 

20140112-184928.jpg

 

One of the things that I think is so strong in my own struggle is that sometimes, I can try to push my pain aside or ignore it (knowing full well of the hell I’ll have to pay later) just to help others that are sick. My gift, in this 8 year journey, was being trusted with the gift of compassion. Empathy. The desire to want to fix anyone and everyone.

“Compassion hurts. When you feel connected to everything, you also feel responsible for everything
And you cannot turn away
Your destiny is bound with the destinies of others.
You must either learn to carry the Universe or be crushed by it.
You must grow strong enough to love the world,

yet empty enough to sit down at the same table with its worst horrors.”

– Andrew Boyd

I’ve noticed lately that I’m back making others struggles my own again. Not in the sense that I’m running around and say “OOH I HAVE X Y AND Z BECAUSE THEY DO TOO!” (Big spoonie no-no) — but rather I say something like “I can help you, fallback on me, you’re not alone”

And those words, those promises, leave alone. You are put into their battle path. Once the agreement is made, you can’t turn back. I do not turn my back on my friends and my family (unless there are some legal issues, blah blah, you know what I mean).

But in doing so, sometimes you get the blunt of the sword. You are the enemy now instead of the shoulder to cry on. We give everything we have to the people in our lives. Everything. We would push all of our energies to save the people around us because we know what it’s like to not have anyone pushing for you.

Sometimes, just sometimes, I think it would’ve been better to leave baby in the corner. Let her find her future on her own and see how many people find that inspirational. But I’d always be the one pulling baby out of the corner. “Embrace yourself. Be strong. Be confident. I know you can do this” — the words are the right words to say, but they’re hardly words that I believe.

20140205-181558.jpg

I believe that even if Mayo does find something wrong with me, that it will not make my life honky doory. I know very well that with any diagnoses I receive, it will be work to get their long-term plan in place and that my life sill not become substantially better in the week plus I’m in Mayo working with those doctors.

Now that you know a little bit more of what’s going on, here’s how we go from here…

I head to the Mayo Clinic in less than 3 weeks now to work with a team of doctors to try to figure out what’s going on with me. My doctors, aside from my PCP who has been a GOD SEND, have all said “we’re out of options. Tell her to learn to live with the pain.” I wasn’t not given any recommendation as to how one is supposed to “live without the pain” when the doctors have not listened to you or even helped with your “coping  mechanisms” that somehow will save the rest of my life. Step one: believing in yourself when no one else does. I’ve been hearing for years that I should go to Mayo and when they finally accepted me as a patient, it’s turned into “oh shit, she was serious about that”. Yeah, I was serious about being healthy, or as healthy as I can be because these last two months have me reconsidering what Hell is actually like.

A vacation is being the family over a holiday and I’ve shared with multiple members of the family that I am less than thrilled to go. Years ago, I went to Rochester, NY with my big sister to visit our brother at college. The day before we were supposed to leave, I started feeling really sick. My sister had to cut her activities short so she could drive me to the ER — where the staff gave the order of “give this girl medicine and just get her home.”  I was apparently a less than ideal companion and my sister dropped me to my parents and a sentence of “get her away from me” and then didn’t speak to me for a couple of days.

So get this. The bahamas over thanksgiving. I DON’T KNOW WHAT TO DO. That will be 3 weeks before my first finals at the Graduate level and that just screams “STRESS” and I’m not going to be doing cartwheels, running marathons the day after Mayo. That’s just not realistic. But my concerns were pushed aside. Because I shared my concerns about the travel and uncertainty of the trip and how, if i someway managed the flights, I’d likely be in the hospital when we get there — and that’s thousands dollars of debt because of me and a very large potential of ruining vacation for the entire family.That being said, i was told I was being far too negative and that I was just asking for it at this point.

Right now, I can hardly walk. Being in compressed air is probably not going to go over well. I’m going to get off of that airplane and be in an automatic flare when we walk off — this is not being negative, this is my reality. This is the reality that you and I face every day, but to have your family resort to name-calling and an undertone of guilt.

Photo

How do you handling travel with Chronic Illness? How do you explain what we feel to family members because they’re just not getting.

I mean, I say “I’m stressed out about the entire trip, but such is life.”  and then just blowing it off. I’ve tried explaining it to them and I think I just talked to a brick wall. My mind was made it for me after that and I received tickets to get the bahamas and to get back.

I’m frustrated. I’m exhausted and haven’t received more than 3 hours of sleep in the last week and I’m going to snap soon because of these medicines and the added stress.

I’m sick of being the fall back person in life. I hate that I’m capable of being that person because I’d rather the finger be pointed at me because I’m used it than have it pointed at someone else who isn’t equipped like we are to face the ridicule, humiliation and guilt.

I wish that this world could understand that we understand our body better than anyone else. If I’m telling you “I think that’s too much” then PLEASE listen to me. Don’t tell me I’m borrowing trouble. Don’t tell me that I’m a negative person. I understand family time. I understand the message behind it and that I have a lot to be grateful for — I just wished I was listened to without judgment and someone tell me that I’m just thinking negatively.

Am I overreacting? I was really hurt by what was said — I’m trying to forgive the names that were called, but I face so much pain every day that there was no other way for me to do it.

How do work with your family and the people in your life who think that you’re a “negative Nellie” when you’re just trying to explain how your body works and why the travel is so hard on me and I’ll be prepping for finals.

I don’t think that spite was intended, but really? Do you feel the pain we feel every day? Does it radiate throughout your ENTIRE BODY, relentlessly and yet, society expects  us to be normal.

I’m sick of putting on a brave face for people who are just going to treat me like this. I do my best to not intentionally hurt them by letting them see my pain and my struggles, but then everything is turned around when my health is an inconvenience.

I’m tired, I’ve probably slept 14 hours in 10 days. I’m so tired, I’m so frustrated.

But we can’t just give up, can we? There are too many people who are counting on teaching them how to be strong. There would be a lot of people disappointed in us for giving up because we just can’t handle it one day and need a break.

I’m frustrated, family. Do you have any advice to get people to listen and maybe even understand?

I need your help — tips/tricks — how do you help them understand. Especially when they think they already know but clearly treat you differently.

Advertisements

Lacking eloquence

Sometimes, we struggle to find hope. Sometimes, we just plain struggle and there’s no sense to the struggle — there’s just heartbreak and physical and mental anguish.

Disclaimer: Today, my heart hurts. My life is heavy and I have no eloquence left to spare. I have no energy left to spare and I’m so far into negative spoon territory, it may be 2016 before I hit positive territory again. I’m sorry for not having eloquence. This post will be blunt and all of it may not be positive. But I suppose that’s life, right? Not everything will positive and sometimes a dose of reality is what we need.

I just re-read The Fault in Our Stars by John Green. A book that I have a love-hate relationship with. Part of me wants to urge you to go read it. The other part of me can’t fully recommend it because it breaks you. I have yet to read it without sobbing hysterically. So, if you read it, you’ve been forewarned. It’s truly beautiful, but as a good friend of mine once said: “Don’t you know that things that are most beautiful in this life are the most deadly?”

Lately, I have forgotten the beauty in the world. Since April 30, I have suffered a chronic migraine almost every day. I’m lucky to get four hours of sleep a night. I’m lucky I’m still walking considering the amount of pain that I’m in with each step. I didn’t really take the opportunity to enjoy the moment of moving to a new apartment with my boyfriend — a bigger apartment that’s beautiful and that I’m truly blessed to be in. I haven’t been able to breathe fully without wincing, I can’t stand very long and even though I try to push through the pain, my body rebels twice as hard as it was prior to whatever it was I was trying to do.

“That’s the thing about pain — it demands to be felt.”
– The Fault in Our Stars

Over a month ago now, I’d officially reached my breaking point. I’ve been fighting some sort of disorder or illness or pain since I was 16 (I’m 24 now) and I finally threw my hands up after my rheumatologist said, for the twelfth time, “I can’t do anything else for you. It’s time for you to learn to live with your pain.” Ultimately, that was what I needed to crack. I’m now scheduled to go to the Mayo Clinic in Rochester, Minnesota at the end of June — nothing short of a miracle since they denied me as a patient many years ago when this first happened. Clearly, putting “8 years” as my answer for “How long has this been affecting you?” got their attention. I’m going back to graduate school in August, I can’t afford this pain in my life anymore — at least not without some sort of answer, some way to manage the pain.

But do we ever manage our pain? Or do we simply just “learn to live with pain”?

Our bodies can only take so much. I sit here marking four months with a temperature that will range from low-grade up to 103.4 and no one knows what’s causing my fevers. Is it just a result of this pain or is there another cause?

Last night, I walked out of the bedroom around 11:30 pm, allowing my boyfriend to sleep peacefully. I tried sitting and watching tv, but gave up on that around 1 am when I couldn’t sit anymore because it wasn’t comfortable. I can’t sit, I can’t stand and laying was even worse.

I will fully admit that I just laid on the floor and cried last night for hours, whimpering softly to myself so as to not wake anyone. I have officially had roughly 9 hours of sleep in almost four days.

For me, being tired goes one of two ways: I get goofy and just laugh so hard I cry at everything — or I just cry. Sometimes, I think the best therapy is reading books like The Fault in Our Stars and My Sister’s Keeper so that you’re almost forced to cry.

Hear me out on this: We spend so much of our lives trying to be strong for everyone else. Our hearts are rarely on our sleeves because we can’t handle disappointing the world. We cannot hurt the people we love by telling them how much we hurt and how much we actually struggle.

That’s why we have our separate Spoonie Family, right? Because we are unabashedly ourselves. This family knows no limits, it knows your pain (which is sometimes all you need — someone to say I understand and know that they actually do) and can empathize instead of sympathize.

This journey has been so long and so pain-filled. My family watched me struggle closely for many years as I was still living under their roof. Now, it’s my boyfriend who sees most of it and my family only rarely (though they do hear about it when I’m broken down and can’t hide it well). He frequently asks me “How are you? What can I do to help? Can I get you anything?” and checks on me hourly — making sure that I’m drinking water, force-feeding me some days and making me laugh even when I think a smile is impossible. He reminds me there is hope every day in just caring for me without reservation. Without thinking I’m a burden…or if he thinks it, he doesn’t tell me. And sometimes when you lose your ability to hope — ignorance can truly be bliss.

“Nobody is biting it from the plague or smallpox or yellow fever or whatever, because there is no glory in illness. There is no meaning to it.”
-The Fault in Our Stars

So, until June 25, I choose to go between mild hope and much ignorance. Sometimes, it’s better to not be fully in reality. Sometimes, reality just bites.

But against all odds, there is always light in the darkness. There is always the knowledge that even when it’s storming outside and dark as can be, that when the night is rough and you’re crying not knowing how you’re going to get through it — the sun will always rise again. There will always be sun behind the clouds.

So maybe I’ll try mild ignorance and much hope while I struggle to keep my head above water. After all, we are warriors, are we not?

Until next time my dear, dear family.  If you made it down this far and read all of it and maybe comprehended my scattered thoughts, please know how truly I appreciate you (I appreciate you even if you didn’t read it all and can’t blame you for not trying to comprehend my pain-laden thoughts).

Love, spoons and all the hope I can muster comes to you all ❤

“It occurred to me that the voracious ambition of humans is never sated by dreams coming true, because there is always the thought that everything might be done better and again.”
-The Fault in Our Stars

Relatable rant…I hope

I write today out of exhaustion. Frustration. Misunderstanding. Hypocrisy.

This post will be blunt. There will be very forward statements made and I’m warning you that if you can’t handle this, you may want to stop reading right now.

To date, I have been diagnosed BY MEDICAL PROFESSIONALS (in no particular order) with the following:
Depression
Anxiety
Fibromyalgia
Endometriosis
Potential PCOS
Asthma
Hypoglycemia
Chronic migraines
Chronic nerve pain that is separate from my fibromyalgia
Carpal tunnel in my right wrist from my break
IBS with potential IBD in my colon but I’m not strong enough to endure those tests again

I’m sure there’s more, there’s always more, but those are the ones that come to mind.

I have spent weeks fighting the nay-sayers. I haven’t slept in five days. Every time I doze off, I wake up screaming and with an inability to move from the pain. I’m trying to pack and be able to get my apartment ready for the move and the constant bending up and down is killing me.

Truthfully, I feel like I’m being killed from the inside out and there’s not a damn thing that anyone can or wants to do about it.

A few weeks ago, my panic attacks came back. There was no trigger, but I was back to hyperventilating. Back to hiding in a small space where I felt safe and shaking like I was having convulsions. I couldn’t let my boyfriend in the room to help. No one could help. The space just kept getting smaller and I just had to self-soothe my way through the end of the attack. But what do I know? That was just me being dramatic, right? I don’t need to go see my counseling PA about that at all because it will pass and adding more chemicals to the mix will surely make things worse.

Until I started having them 3 times a day and I was bashing my head into a wall during the attack. Still think I don’t need help?

How about the depression that can be so crippling without the assistance of the chemical to balance my brain back out, I have no desire to do anything. I cry. I fight. I’m mean. I’m cranky. And I have to fight demons that tell me I’m not good enough and that I’ll never be good enough for this world.

Depression is a chemical imbalance in my brain. It is hereditary. You are not crazy with a diagnosis with depression — you have a CHEMICAL IMBALANCE AND IT IS OKAY TO SAY THAY YOU NEED HELP. I cannot will my chemicals to get better. I cannot pray my way out of this. I have to bite down, claw, scream and cry my way to survive. But what do I know? I only live in my body and feel how WRONG it is without medication. I only fight the demons that encourage self-harm and suicide when I’m not on these medications helping me. I know nothing of what’s best for me. The cymbalta must be poison because it makes me feel like a normal human being instead of a mopey, emotional, raging teenager.

The medicine for my endometriosis, continuous birth control to stop the growth of the tissue, is one of the only medications that doesn’t get fought. Why? WHY? Because you saw me vomiting from pain? Because I was forced to CRAWL when the pain was so bad I couldn’t remove myself from the fetal position? Why is this one of the only medications that’s OK but has some of the riskiest side effects and is the medication most likely to interact with everything else? Why?

I’m tired. I’m frustrated but I am too exhausted to continue to fight the same battle every six months or less to be bullied anymore.

Listen to me: a daughter, a sister, a best friend, a girlfriend, a granddaughter, a niece, a neighbor, a HUMAN BEING–no one should have to live like this. No one. But instead of looking at the cross that I continue to bear, you are looking at Calvary and not offering any way to carry my cross for me when I am too weak to get from point A to point B.

I contemplated buying diapers, in all humility, yesterday because that’s how much of a burden it is to walk 3 feet to my bathroom.

I laid on the bathroom floor and cried when my shoulder and elbow joints on both arms were so swollen, I couldn’t reach around to give myself a suppository to stop vomiting.

It’s my hope that some day there will be understanding. That some day, society will realize the pain that we manage WITHOUT narcotic pain relief because our doctors, like you, believe we are seekers.

I’ll tell you what we seek. Pain free life. The ability to function without screaming or crying. The ability to do whatever we want, whenever we want, without repercussions and judgment. We seek freedom from the bodies that hold us prisoner.

So thank you for telling us that we’re poisoning ourselves. Thank you for telling us, however so politely, that I’m fat and that’s the source of all of my problems. Thank you for the reminder of why I feel I need some of this medication because having someone you love tell you you’re overweight and that’s the problem is JUST what we need to hear when we’re flaring.

Whatever happened to, “I’m sorry. I don’t understand what you’re going through but how can I help?”

When did “maybe you need to lose some weight” become an okay substitute?

I rarely eat because I’m so nauseous but my eating is the cause of my pain.

Thank you for your support. Truly, it means the world to me.

</3

Sporadic thoughts

Bear with me family. My head is spinning, my pain levels are high and my nausea is higher. And don’t even get me started on my fever.

I’ve called my primary doctor, psychologist, and rheumatologist. My rheum in all of her WISDOM, came back with “I’m sorry that you’re in so much pain you’re vomiting and that you’re still running your high fevers but I’m not going to do anything for you. There will be no change in your plan (what plan? The plan where I see you every six weeks, you see test results that show HORRENDOUS internal inflammation and just blow then off like they’re nothing?).

Nothing. There will be nothing done.

Paragraph there of the Hippocratic Oath–the oath that all doctors swear to uphold when they are sworn in.

” I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.”

Doctors need to go back to school for compassion.

Never do harm to anyone? YOU DON’T LISTEN TO YOUR PATIENTS.

Never do harm to anyone. “Your inflammation levels are off the charts but we’re not doing anything about it”

How do we defend ourselves and fight them when they can threaten back?

Anyone else stuck?

20140327-124908.jpg

At a loss…for everything

“Anything worth having is worth fighting for.”  
― Susan Elizabeth Phillips

I write to you today from the lobby of Embassy Suites hotels in Louisville, Kentucky. When I was in college, I traveled a lot for journalism conferences and let me tell ya — this hotel is defninitely one of the nicer hotels I’ve ever been in. Five stars, Embassy Suites, five stars.

We’re here to visit my sister (and her dog, of course!) neither of whom I’ve seen since Christmas. The joys of growing up, yes? If I could, I’d live around the corner from my family my entire life. Unfortunately, that’s just not realistic.

The drive from home to here was approximately 8 hours — we brought our two puppies, so there were some more frequent stops for potty breaks for them. Let me be perfectly clear, I don’t remember the last time that a “simple” trip has been so grueling. By lunch, I was virtually in tears because of the amount of pain and stiffness I was feeling. I was in one position with the dogs on my lap for the majority of the ride and they kept going to sleep or having that really painful prickling feeling.

“You will never be entirely comfortable.
This is the truth behind the champion – he is always fighting something.
To do otherwise is to settle.”
-Julien Smith

Since my doctor and the majority of my family is against pain medication, I have none. Nothing to numb the pain, nothing to ease thedesire to crawl into a hole and cry until the pain passes. I knew it would be worth it. My sister is my best friend and my dogs are part of my family and family, in case you haven’t figured it out, is life. But for those 8+ grueling hours in the car, unable to move, unable to figure out how to do physical therapy on my wrist without getting turquoise thera-putty all over the car…and my dogs, there was just one option left.

Endure.

Do you ever get frustrated with people asking you how you’re doing when you’re clearly in pain and just trying to manage? Maybe it’s because I’m a silent sufferer, but when it’s obvious, just let it be.

“If you listen closely, silence can be deafening.”
-Truth Devour

Sometimes, I just want the ability to be. I want the ability to be in in a quiet place in my head where there’s no one but myself, to be able to listen to my body and really try to figure out what it needs and how I can fix the situation.

But alas, we walked into the hotel yesterday to three different high school baseball teams talking about grotesque night parties, an 8-year-old’s birthday party (pool party) and the screaming commenced. I was on sensory overload. “Katie, don’t push…” AHHHHHHHHHHHHHHHHH LOOK AT THE DOGS “How are….” THEY LOOK LIKE BOO! OMG OMG OMG OMG! And I won’t even begin to talk about what these high schoolers had planned because even as a mature adult, it disgusted me. My anxiety went through the roof, I wanted a quiet place, I wanted a close, a hole, under the bed — somewhere.

But instead.

We endure. [[and for the record it was worth it, I love my family and it’s great to be here with them]]

“Life is going to beat you up, it wouldn’t be fair if you didn’t throw some punches back at it”  
-Bradley Bowman

We endure through pain and tradgedy. We endure through the injustices of this life in order to look and act “normal” when we are far from because this world was not made for us. This world was not equipped for us. This world is not ready to hear what we have to tell it and quite frankly, this would is ignorant and I don’t think they want to hear it.

We fight silent battles every day that no one knows about. Sitting in a room of 10 people is almost crippling to me now.

But we’ll endure.

Why?

Because we have to. Because we know what it’s like to not. Because we know what it feels like to see someone lose the battle and we know that hurt. Because we know we don’t want that for anyone else.

But most of all?

We know what it’s like to live and no one will take that away from us.

“Words are what you fight with but what you fight about
is the differance between having something to live for
and not having something to live for.
Me I have something to live for not something to prove.
As long as you dont mess with what I have to live for then you will keep your pride” 
– Kevin Skeens