Tag Archive: intercostal neuralgia

Seven things I’ve learned since being sick

1. Doctors are human. Since first going to the emergency room Feb. 4, naively believing that if  I pointed to a stabbing pain in my stomach I would be instantly diagnosed, I have had to claw my way around a medical system that has wrongly diagnosed me with things ranging from shingles to wearing the wrong bra.

I have gone through treatments that have done exactly nothing for me. I have had to go back to doctors over and over and over and over again because they were dismissing my symptoms and then I have had to find new doctors. Every specialist I have seen has diagnosed me with whatever they specialize in, regardless of how much if varies from my previous diagnosis. Every specialist appears to have been wrong. And even though they’re charging you and  your insurance company $300 for a 10 minute visit, they still often come off like you’re totally appropriate questions about your body are annoying.

2. Insurance companies are as bad as everyone says they are. They wrongly code things and charge me $400 for immediate care visits that should be $30. They apply everything to crazy high deductibles, and then after you meet that, they still apply things to your yearly limit. They don’t apply co-pays to anything. And they make it impossible to get things pre-approved. Try explaining to your neurologist that you can’t get your MRI pre-authorized because your insurance is based in Michigan, where your company headquarters is, but your hospital is based in Illinois and the two can’t seem to connect. I may have insurance, but I still have thousands of dollars of medical bills to pay from all this mess, and it’s only June 5.

3. Being in constant physical pain drains the life out of  you. It sucks your happiness from your soul. It makes you want to give up. And it all happens so much sooner than you’d expect. Before any of this happened, I would have thought that four months of daily physical pain was not that long. I would have assumed that leaning on my faith and my loved ones would get me through it. And I would have thought that I could have kept my hope.

I would have been wrong.

It takes about three weeks for the realization to set in that your life is changing, and after one month the depression starts. For me, April was a completely lost month. It was before they had me on a sleeping pill strong enough to handle the situation, and before I had any relief from the pain at all. I was suicidal. Looking back, I’m not sure what kept me going. And even today, sitting here, typing this, while stabbing pain shoots through my right ribs, it’s hard to tap into that thing that all of us have that keeps us breathing.

4. Priorities come into focus very quickly. As the daily pain took over my life, everything around me has started to slip through my fingers, and I’m only able to grab hold of the things I really need. There are small things, like folding laundry and doing the dishes on a daily basis that just don’t happen. Showering daily takes too much energy, and I have to hand over my car keys whenever I’m with anyone over 16 because driving hurts like a stab wound hurts.

But there are big things too. Suddenly I have found myself working from home three to four days a week for my full-time job. And with my youth ministry work, I’m only leading on Sundays. All the leadership meetings during the week, and the bible studies have disappeared from my life. And actually, sometimes even the Sunday classes are hard. There’s weeks when we just play a game the entire night for youth group. Or when I’m too sick to get to morning sunday school and my boyfriend has to lead at the last minute. Before I was in pain all the time, I never, ever would have ever dreamed of cutting back on my ministry work.

5. Cutting back on my ministry work, does not mean cutting back on God. This lesson had to be nailed into my head with a hammer. And I doubt that anything beyond constant stabbing pain in my ribs would have done it. But I have learned it regardless. I know now that scaling back at church is separate from scaling back on my faith. That pulling away from my responsibilities there is different from my relationship with God.

In the beginning I wondered if this whole thing was the Devil trying to get me to stop my work there. If “the enemy” saw all the good work that was going on with the youth group and he was pulling a Job on me, and taking away my health to see what would happen. I worried that if I gave in, I would be in a way giving into the Devil. But the pain has driven home another lesson for me. That God loves me for me and he knows my pain, and he understands. He understands when I can’t get out of bed to go to church because I feel like there’s a metal knife in my ribs. He, if no one else, understands when I need to pull away from my work there to focus on healing. And God, and probably God alone, truly feels how horrible it is to live with this constant pain.

6. We all need help on this little blue planet. I’m not so great at asking for help. And my chronic pain is such that when you see me, you might blink and miss it. You might think to yourself, “She looks pretty healthy to me.” And so, I have struggled to find help I desperately need right now. I have reached out in every way I know how, but that hasn’t always been enough.

I have been leaning like dead weight on my mom and my sister and my grandma and I am truly thankful for family that’s here for me when my life is so dark. They live two hours away, but it seems like my mom still folds all my laundry and my sister is always helping me out with the youth group and I’m pretty sure my grandma’s prayers are the reason I haven’t committed suicide yet. They are the trinity of love in my life right now and I only wish I could see them more often. They give me strength when they are near me, and it gives me hope to know that they would do anything in their power to make me better.

I have also depended on my brother Steve, who lives with me. He has brightened my spirits just by being the only other human being I see many days. And, because he has lived with me for a couple years, he has seen the before and after me, and knows how sick I truly am. He understands how many days I don’t leave the couch because of the pain. He knows how hard it is for me to get to get to the grocery store. And he never judges me for going days without showers.

I have also relied on my boyfriend Eric to talk to me all day on the phone, everyday. Especially on the days when I can’t leave the house. I have called him at three in the morning, crying in pain. I have vented to him about the craziness of the medical system, and he has sat with me at many, many doctors appointments. He has argued for more aggressive treatments on my behalf. And,  he has also done everything possible to try and take my mind off the situation with lots and lots and lots of greats dates. Maybe more important than any of that, he has stayed with me despite it all.

7. Sometimes prayer doesn’t work how you want it to. I have prayed to get better 1,943 times. I have prayed on my hands and knees. I have prayed while peeing on the toilet. I have prayed while sobbing in my bed, unable to find any position that is comfortable. I have said the Our Father during MRIs and Intercostal Nerve Block procedures. I have prayed while contemplating suicide in the car.

I have prayed and prayed and prayed and prayed and prayed. And I honestly don’t know anymore if God is listening. But I hope He is.

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21 pills a day.

I go back and forth between wanting to do every possible thing there is to do in the world and wanting to kill myself because the constant pain and the constant stream of pills is too much to bear.

I calculated it last weekend, and I’m on about 21 prescription pills a day. That’s 21 pills every single day just to survive. It’s 21 pills just to make it from sun up to sun down.

Every single day, I wake up in horrible pain because all my medications have worn off.

The hydrocodone and the gabapentin from the night before are no longer in my system, and my right rib hurts so bad that it’s hard to breath. It’s hard to even reach over and grab the bottles of pills and count them out and put them in my mouth and then grab the cup of water I put there the night before knowing I would need it and then take a gulp and swallow it all down.

I have to use every ounce of strength I have in my bones to get up and reach over and grab those pills every morning. And of course it doesn’t help that my brain is fighting off the fog of the sleeping pill I took the night before.

I hate it. I really hate it.

I want it all to be over so bad.

I don’t understand it, and the doctors don’t seem to either. The pain specialist and Loyola told me that he doesn’t know what caused it, he doesn’t know what will cure it and he’s pretty much just hoping it will go away on it’s own.

My primary care doctor told me to make an appointment at The Mayo Clinic, and after realizing that I just can not live my life by depending on two hydrocodone every four hours, I decided to take his advice. So I reached out to them this week, and then they said they would need a referral, which my primary care doctor gave them. But then they said they had to decide whether or not they would take my case.

Did you read that? They have to decide if they going to take my case or not. The Mayo Clinic is just about my last resort on this stupid blue planet and they could end up deciding that I am not worthy of their care.

They said they would tell me their decision in 10 days.

Whatever.

Just like everyone else, they think 10 days is a short amount of time, but they don’t seem to understand that for someone in chronic pain, 10 days feels like 10 years.

I’m so frustrated.

I hate dealing with this every day.

I know it could be worse. I know I need to pray and lean on God. But it’s just so hard to get up out of bed every single morning and reach over and grab those pills.

And then to have to take a bunch more four short hours later because my right ribs are screaming in agony.

I want to be healthy. I want to do all the things I used to do. I want to be awesome at both my jobs. I want to be an over achiever.

I want to be able to hop in a car and drive out to see my mom on a moment’s notice, or help my boyfriend clean out his office, or decorate the youth room or go to the grocery store anytime I want without having to calculate how much pain I’m going to be in at the first stoplight I hit.

I want to reach over and give my boyfriend a big hug without horrible pain radiating throughout my body. I want to cover a candy show without having to lay down behind the booth throughout the day because the pain is unbearable and I can no longer stand up. And I want to love being alive again.

And I can’t do any of those things right now. In fact, I can barely get out of bed.

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I’m still in pain. And I still don’t know why.

I’m still in pain.

Like all the time.

I haven’t killed myself.

I figured I should a write a post saying that in case you’re the one reader here who’s not my friend in real life or on Facebook and you’re worried I ended it all based on my last post. 

I haven’t.

I’m still in near constant pain though.

My only symptom seems to be horrible stabbing pain on my lower right ribs all the time and then it hurts when you even slightly touch anywhere on my right rib, including my right boob. (I can say “boob” right? Even though I’m a youth leader? Or is there a more Christian term for that part of my body? I can’t think of one).

Anyway, so they laid a small tube across my right chest during the MRI I had of my spine and my throat Monday and the tube was connected to something I could squeeze if I needed help. Within minutes I was crying from pain because it was too much pressure on my chest and I had to have them move it. And I can’t wear a stretchy tank tops because it’s too much pressure on my chest and it hurts like hell. (“Hell” is in the Bible. I can say that).

The pain has been very hard to deal with.

My friend told me yesterday that his dad used to say that nothing deteriorates your mental health faster than constant physical pain. He’s right.

If you seriously knew how often I genuinely considered killing myself over the last couple months you would be shocked. I’m shocked.

I’m trying to sleep a lot and I keep waiting for the next doctor’s appointment hoping that I will finally get some help, but it hasn’t happened yet.

Prayers are appreciated.

Basically, the MRI’s of my spine and my throat came back clear, which means I don’t have a pinched nerve. They don’t think it’s costochondritis because it doesn’t seem to respond to anti-inflammatories. They’ve given up on the idea of shingles. They have no idea why the intercostal nerve block didn’t work.

The pain specialist basically told me on Monday that it’s nerve pain. They don’t know what caused it. They probably will never know what caused it. They don’t know how to make it stop so they’re just going to keep trying different medications to see what works. And they have no idea how long it will last, but they’re kind of just hoping it will go away on its own.

I cry a lot. But crying hurts.

I tried to Google some things. But my official diagnosis of  “intercostal neuralgia” is rare enough that not much comes up. It was like the first page of results that suggested marijuana might help.

I want it to stop. I want my life back. I want to be able to take a full shower without crying. I want to able to wear a regular bra again. I want to be able to drive into work without sobbing. I want to able to walk around a Wal-Mart without feeling like I’m going to die.

And I want to know why the heck I was fine on Feb. 2 and by Feb. 4 I was in the emergency room with stabbing pain in my right ribs and nobody can tell me what caused it.

 

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