Invisible Illness

I have a friend with Rheumatoid Arthritis (RA).

My mom has it too.

RA is an invisible illness. People with invisible illnesses have no visible symptoms, so many folks don't understand why they can't do all the things that most people can do. There is some sort of spoon theory that they use to try to explain it; long story short, people with these invisible illnesses only have so many spoons to get through each day. They have to think about how they are going to use each spoon because they can't go get more spoons at the spoon store, and I can't give my mom or my friend some of my spoons to get through the day.

I found out my friend was thinking of a project involving spoons; she's real crafty and creative like that. I made it my mission in life to go find my friend lots of random spoons. I went to the local flea market hoping to find some spoons. I found a bunch of random spoons and bought lots of them for my friend's project. This made me happy.

Then, I got sad. I was sad because I can't give my friend any of my metaphysical spoons, even though I often have more than I need to get through my day. I would gladly give up some of my spoons for my friend or my mom, but I can't. That isn't how spoon theory works. Maybe some day, science will have the answer to that conundrum, but right now that is still "fringe science"; I get enough fringe science from my Sunshine, as he studies the neurophysiology of addiction.

I sat and thought about spoons, and I was sad that I can't give my spoons to those who need them. Then I had a moment of extreme giddiness over the saying we have in recovery about how "spoons are for stirring coffee." This is especially funny to addicts, because we have some insane uses for spoons.

Then I remembered that movie The Matrix. There is no spoon. This has the potential to take me down the paths of fringe science, but I get enough of that from Sunshine.

So rather than be sad about not being able to share my metaphysical spoons, or travel down the path of fringe science, I went shopping.

I went to an antique shop, and I bought some spoons. I bought some really neat, rather fancy, really random spoons. They are my gift to my friend.

See, I sat in a meeting last night with other recovering addicts, and I realized that the fellowship is all about the therapeutic value of one addict helping another. We addicts share our experience, strength, and hope with one another. We share our metaphysical spoons.

While I may not have an invisible illness that leaves me debilitated on some days, I do have a disease that can't exactly be seen. The treatment for my disease involves sitting around with other recovering addicts and sharing our spoons with one another.

While it may not help my friend get through her day better (physically) for me to send her some fancy antique spoons, I know that it will make her heart smile, and that's what helps her get through the bad days - just like another addict's experience, strength, and hope helped me get clean.

Today, y'all are part of my circle of recovery. Y'all share y'all's spoons with me, and that's some awesome shit.

And until fringe science catches up with us, we'll keep stumbling along the best we can. And I'll keep buying up random spoons for my friend.

This isn't a story about my depression or Post-Traumatic Stress Disorder. I've seen many posts on these topics, so I can completely relate to "We are none of us alone."

Today, I'm writing about what the doctors tell me is nothing. According to them, there's nothing wrong with me.

Well, I say bullshit.

In November of 2010 I was feeling very depressed and, upon speaking to my doctor, made the decision to go on medication again. It wasn't the same medication that I'd used in the past. After two weeks on this medication, I began to see blood in my stool. As the pamphlets advise, I went to my doctor's office immediately. The secretary there told me to go off the medication and, stupidly, I did so without consulting my doctor.

Not too long after that, I stopped using the other antidepressant, as well.

The bleeding didn't stop, and it was bad. I cried in pain while using the bathroom and when I saw the toilet paper covered in blood, soaking entirely though.

I made an appointment with a nurse practitioner (read: don't have to wait two months for an appointment) who referred me to some sort of bowel specialist. After seeing him, I had an x-ray done on my abdomen and made an appointment with him again, this time at the hospital.

Upon my arrival, I was told that I was to remove my jewelry (impossible without pliers) and that I was having a scope done with no medication. Yeah...not having known in advance that I was booked in for a scope, I walked in there and ended up walking right back out.

Before I left, the doctor came out and in his thick accent told me (I think) that in the x-ray he'd seen a lot of waste in my intestines. He advised me to reschedule the procedure.

I didn't.

In February 2011 I fell while ice skating and instead of eating shit, I turned my body so the force of the impact didn't result in two black eyes and a bloody nose. By doing so, I landed on my right knee and shoulder. While that seemed better than looking like I was in a horrible bar fight, it may not have been the better choice long-term.

I knew it was going to hurt, perhaps for a while. But when I was still in pain after four months, I decided I needed to see a doctor. I booked in with my family doctor and waited two months for the appointment. I was sent for x-rays on both my right knee and my shoulder.

While there I told him about the doctor I was referred to by the nurse practitioner and my experience. He didn't think this was the right doctor to be referred to for this type of problem, so he referred me to a surgeon.

When following up with the doctor's office on the x-rays on my right shoulder, right knee, and abdomen, the secretary told me she saw the x-ray and didn't think anything was wrong.

Yeah, you read that right. She totally looked at my x-ray and decided to be a doctor.

I told her that I would like to speak to the doctor about it so, after some fuss, I got another appointment. The doctor said he couldn't see anything wrong according to the technician's notes. I was then referred to an ultrasound technician for my right shoulder, as my knee had stopped hurting by this time.

I waited for that appointment, as well as the appointment with the surgeon, for another two months. Finally I got in for both appointments! The ultrasound technician said she saw nothing to be worried about and forwarded her notes and findings to my doctor. The surgeon booked me for a scope during which I was to be asleep. He also took a biopsy in a couple locations to confirm there were no problems. I found this out at my follow up with him two months later.

By direction of both the ultrasound technician and the surgeon, I had a follow up with my doctor (read: another two months waiting). He has completely dismissed my shoulder pain and prescribed me some cream to use for my other pain, saying I have a crack or something down there causing the pain.

I feel I am being told that there's nothing wrong with me but, still, I'm having so much pain and (thankfully less) blood while using the bathroom. I also have quite a bit of pain in my left shoulder now, and occasional pain in the right. It's hard to work some days when the pain in my left shoulder is too bad, or both shoulders hurt on the same day.

It's almost impossible to work when I start having bowel issues, as I sometimes need to use the bathroom frequently. Other than the blood, I have much flatulence; sometimes the frequency and urgency can be unbearable.

I love my country, but even though I don't directly pay for my Canadian healthcare, sometimes it's a real pain in the ass to have to wait so long for appointments for just about any doctor. I also live in a small town with no walk-in clinic, so the options are doctor, nurse practitioner, or the emergency room.

So there's my story on invisible illness, I don't know what exactly is wrong with me, and the doctors seem to act like it really is invisible.

Between working doubles, keeping the kids busy, and keeping up with my husband's work schedule, this summer has been a busy one. So naturally, now would be the time for my Ehlers-Danlos to act up.

I've always had swallowing issues (dysphagia), but lately, they've been getting progressively worse. In addition to my occasional choking episodes, I have acquired some volcanic acid reflux, shortness of breath, tachycardia, and a pain/pressure right under my diaphragm that feels like someone hit me in the chest with a baseball bat.

Coincidentally, I happened to have a GI appointment, and after going over my medical history and current symptoms, my specialist looked at me, paused, and said, "I really don't know. Let me get my colleague."

Sweet, can't wait.

After about 10 minutes, the doctors come back in the exam room:

"We are not sure what's going on; it sounds serious enough to warrant new testing."

"What kind of testing?"

"All of it."

"Awesome. Just bill Blue Cross. They love surprises. It'll be like Christmas."

So, I'm signed up for another barium swallow test; gastric emptying study (I get to eat glow in the dark eggs . . . yummo); and an endoscopy that I'll have to be put under for since my body doesn't like to metabolize some of the drugs correctly.

I went to the ER back in April for severe epigastric pain that felt similar to pancreatitis, except it wasn't. I had MRIs, CAT scans, X-rays, Contrast, everything.

And fucking nothing.

Sometimes, I feel like I'm going nuts. Honestly. How the hell can I feel like I'm falling apart and yet nothing - absolutely nothing - has showed up. I can't be completely crazy; choking and abdominal spasms can't be normal. The problem is, it comes and goes.

I think it's part of the dysautonomia aspect of Ehlers-Danlos Syndrome - my autonomic nervous system decides it's not going to function properly, so things like gastric motility, cardiac function, and body temperature regulation go right out the window. There's no rhyme or reason.

Summer is generally a better season for me, unlike winter which is like hell on Earth. I've been eating and exercising better, which has been a big help. However when your nervous system decides to crap out, there really are no preventive measures to take, so just hold on for the ride.

For now, I'm just careful with solid foods, and try not to eat when I'm alone because choking sucks. I really don't want to end up with a feeding tube, and I'm sick of playing guessing games with medications that probably won't end up working.

It's hard to explain to people who don't understand what's going on with you. 

Yes, I know I take forever to eat. It takes me my entire 8-hour shift to eat my lunch. If I try to eat at a "normal" pace, I pay for it by either choking or having horrendous epigastric pain (see previous comments about the baseball bat).

Yes, I know I barely eat. You would too if your body's response to solid food was a volcanic eruption of stomach acid and stomach spasms.

I suppose this is all part of my learning curve: learning to take things as they come, because there are days when I'm functioning borderline "normal."

If all I have to do is pop my joints back into their sockets where they belong, then that's an awesome day for me - life is good. If I'm battling blood pressure drops, body temperature dysregulation, and dysphagia . . . not so much.



It's important not only to have someone in your corner who gets it, but it is equally important, if not more so, that YOU get it. Understand that it is an invisible enemy. Your own body will fail you. It will fight dirty, and there is not a damn thing you can do about it - except, accept it. You can not change it. Understand and respect your limitations, which is something I have a hard time doing.

The more I fight it, the harder I fall, the more I hurt. Ehlers-Danlos is a very serious, life-threatening disorder. The dangerousness, in my opinion, lies within the unpredictability. This is why it is so important to be vigilant with your care. Do not ignore symptoms, even if they come and go. And always preserve your strength, not just physical, but your emotional strength as well.

I take the good with the bad; luckily, I have an amazing support network between my husband, family, and friends. My body may fall apart, but that doesn't mean that my emotional well being has to. Don't get me wrong, I get frustrated, I cry, I get angry, and I GET PISSED.

You have to allow yourself to feel your emotions - to be in that moment in order to grow from the experience and gain strength. But it's only a moment. You have to be able to gather yourself and move onward and upward.

Ehlers-Danlos is something I have, but it is not who I am. I do not want to become my disease.

I have more to offer than that.

Happiness is...

Happiness is so many things to so many people. For some, it's tinkering around in the garden. For others, it's talking on the phone with a friend. For still others, it's getting an hour-long massage from that super-hot masseuse.

On this day, Happiness Day, August 8, 2012, we at the Band want to know what makes YOU happy?

Where do you find Your Happy?

Last week I was telling someone about how, as someone who suffers with an invisible illness, I try to put all the good I can out into the universe. Not because I expect something back, but because just the doing of it makes my heart lighter.

If you have any chronic condition, you know how awesome it is to find what lightens your load.

I truly don't care if the good karma or vibes or glittery covered cupcakes ever find their way back to me. I don't do these things to gain something, it's just about giving someone a smile.

This last Saturday, it all came back.

ALL OF IT.

Saturday started a weekend of travel for my boyfriend and I. We were heading to the coast where his band was headlining a local fair and then we were headed to my hometown to spend a belated birthday with my son.

We set out around 1pm Saturday full of high hopes. About an hour and a half later, we were broke down in a little town that I didn't know existed. We spent the next four hours trying to get our car to stop overheating. We finally had it stabilized only to have it completely die about a mile outside of this little town.

In the middle of nowhere.

In triple digit heat.

Thank the lucky stars that my boyfriend has Roadside Assistance included in his insurance policy. They sent someone out, and my boyfriend started calling friends and family to beg a car to borrow. I was sure we were doomed and was already mourning the loss of my mini vacation with my son.

I was wrong.

A short list of good deeds that day:

The tow truck driver drove us back into the town and helped to unload all of my boyfriend's musical gear. He then towed our car back to our apartment, over an hour in the opposite direction.

The young lady working at an adorable coffee shop allowed two sweaty, irritable and stressed people (us) to store all their musical gear and traveling paraphernalia in the back of the shop while we awaited our ride.

My boyfriend's aunts came to the rescue with a car to borrow for the remainder of the weekend.

My boyfriend's band had to start the show without him, but when we arrived? The crowd started cheering for him as he rushed to get his gear set up on stage.

And, after not having eaten since ten that morning, when we stopped at the local Subway, the two teenagers working stayed open a few extra minutes to make our sandwiches and let us eat them there. They'd also had a rough day, but didn't hesitate to go out of their way to help us and make us feel welcome.

When we finally fell into bed that night, tired, filthy, and stressed, we had smiles on our faces. Who knew there were so many good people left in the world?

If I hadn't believed in it before, I most certainly do now. Pay it forward, folks, send out some goodness. Not because you want to get something in return but for the joy in it.

You just might be amazed to find how the universe will repay you.

And in case you were wondering? We spent the next three days visiting with my son. The three of us got to bond as a future family and my mother and I actually got along. I may be broke with a busted car in the driveway, but I've just won the lottery of life.

Nearly 3% of the US population has Bipolar Disorder.

This is her husband's story:

When my husband and I were newlyweds, he had these moments in which he made really poor decisions.

He was sometimes depressed, spent money without considering consequences, as he charged into huge grand plans that didn't work out. Sometimes, I wondered what on Earth I'd gotten myself into.

Like the night he and his buddy went out and he spent $200 that we didn't have. I was sick about it. I had to ask my mother for help to pay some bills. 

I was ashamed; I had no good explanation about the money - I had to tell her the truth. She resented him for it.

I vented about it to my best friend.

She asked, "Is he bipolar? That sounds exactly like the kinds of things my brother did before he was diagnosed and medicated." 

I turned to the Internet where I found an online test. I took the test based on what I knew about my husband. If the test were scored like a scholastic test, he'd have gotten a 90%. It may sound odd, but I was THRILLED to have an answer to his unexplainable behavior!

That night, when he got home from work, I had him take the test. He scored even higher than I'd thought. We made an appointment with his general practice doctor.

We hadn't chosen this doctor specifically; he just happened to be the only doctor my husband had seen for an unrelated issue. This doctor was old and judgmental, but we thought he had my husband's best interests in mind. We were very honest with him, confiding in him my husband's previous drug addiction and his attempts to turn his life around.

When we went in to talk about the possibility of bipolar disorder, I never imagined the doctor would suspect that we were faking it.

I didn't realize that the doctor thought my husband was a drug-seeker.

The doctor handed my husband a piece of paper. I was excited to see that it was the same test I'd found online! In my mind, that meant that we really were on the right track! We were finally getting him some help!

I smiled and mentioned to the doctor that it was the same one I'd found on the Internet. He gave me an odd look and left the room to let my husband fill it out.

He came back in and read the answers on the paper, the same look on his face. He looked at ME asking my husband, "Were you coached about this?"

My jaw almost hit the floor - the doctor was implying that I was helping my husband to FAKE being bipolar to get drugs! I was so offended I could hardly stand it! I wanted to call in all the people who knew me at the hospital to tell this jerk doctor that I would NEVER do that.

He referred us to a psychiatrist whose waiting list was four months long. Before my husband got to his turn on the waiting list, he was offered a job out-of-state so we moved.

After adjusting to a new life in a new town, we talked to our wonderful nurse practitioner about the possibility that my husband was bipolar.

She believed us; helped to get my husband the help he needed. He's been treated by a psychiatrist for over a year now and the medications have made a huge difference for both of us.

I wish I could go back to the doctor who was so horrible before and slap him in the face with the paperwork showing my husband's diagnosis.

Serves him right.