My ribs still hurt.
Yesterday was awful. I was working from home and I managed to stay with my laptop until about 3:30 p.m., but then, after that, I just laid in bed and watched hours and hours of TV while I prayed for the Hydrocodone to work. But it never really did.
Today was sort of alright, so I took a shower. I know. Crazy, right? To be honest, I’m pretty much at a stage in my life where I only shower two or three times a week. All the effort and the moving my right arm to wash my hair just seems to make my ribs hurt more, and it’s just not worth it to put myself through that every single day. I used to at least put dry shampoo in my hair on the off days, but that stuff doesn’t really work that great, so I’ve pretty much given up on that now too. Instead, I just throw my hair up in a bun.
It’s called: Working from home.
I do shower the one day of the week I drive into the office, or when I’m traveling for business. Obviously. Gawd, people, I have some standards.
Speaking of work, I’m flying to Atlanta tomorrow to go to the National Convenience Store Show. It’s my third business trip in six weeks. After this though, I should be in Illinois for the rest of the year.
My boyfriend’s technically from Atlanta, although he only spent five years of his life there. I spent four years of my life in Macomb, Illinois going to WIU, but I barely even remember how to get there. He, however, still roots for the Atlanta Braves like they’re his hometown baseball team. I think it’s because the Cubs (his second favorite team) well, let’s just say they have problems winning and stuff.
Anyway, I miss my boyfriend. Lots. We are still managing to see each other at least once or twice a week, but the long distance thing sucks. Lots.
And my ribs still hurt. I think deep down he’s still hoping I’m going to get “cured” but that’s looking less and less likely.
I did get in to see a doctor at the University of Wisconsin-Madison recently.
It’s university-level care, so it should be top notch. He was pretty cool, and he didn’t seem overwhelmed by my case, so I’m going to stick with him for awhile.
He referred me to their pain specialty department, but they won’t even make an appointment to see me until they get all my medical records from Loyola. It’s been three weeks and Loyola still hasn’t sent the records though. So I’m basically in holding pattern.
And I’m spending my days trying to space out my hydrocodone waiting to see a pain doctor who hopefully won’t freak out about me being on opioids. The last two refills I got on that drug have been from primary care doctors and both of them have been super weary about giving it to me.
They’re all “You take four a day? EVERY day???!!” And I’m all, “Yes. When I said level 8 or 9 pain every day, I wasn’t joking.”
And let’s be honest. If only need four in a day, I’m having an AWESOME day.
On aside, my new doctor did say my symptoms were very severe for someone with intercostal neuralgia. He said he thought I might have Complex Regional Pain Syndrome (CRPS) in my ribs, although he followed that up by saying that CRPS is usually only in your arms or legs. And everything I read online seems to confirm that, so I’m not sure how correct that was.
He also added a new medication to my list of prescriptions, but it doesn’t seem to be helping much. Although it’s one of those long-term meds, so it takes at least a month before you know if it’s working.
And, as of right now, the pain is still horrible.
I was having a hard time eating yesterday because I was in so much pain, and I turned to my mom and I said, “Well, I guess I have good days and I have bad days.”
And she said, “What’s a good day look like? I don’t think I’ve seen one of those.”
My pain psychiatrist used to tell me that pain signals have to travel along your nervous system up to your brain, and that if you send other signals through your nervous system to your brain at the same time, sometimes they can sort of act blockade and by extension lessen your pain.
Like, for example, if your brain is focusing on a really intense episode of Burn Notice, where Michael has to blow up a building and all he has at his disposal is a paper clip and an electric toothbrush, then your brain is probably not nearly as focused on the excruciating stab wound feeling in your right ribs.
It’s not a 100 percent cure or anything like. Even Dr. Samsi admitted that at best the refocused brain could probably only take a level 9 pain down to a level 6.
It’s three little notches, but it’s three notches I’ll take.
And it’s why I spend hours and hours and hours watching old episodes of Burn Notice, tuning into HGTV even though I don’t own a home, and why I love makeup tutorial videos on YouTube.
It’s also one of the best things about living with my family.
Yes, I did technically live with one family member before I moved in with my mom. But, my brother Steve and I would often go days without seeing each other because of opposite work schedules and because we shared a rather large two-bedroom for just two people. I mean, it wasn’t a mansion or anything, but we each had our own full-size bathroom, and we would often joke about having our own “wings” in the apartment.
Now though. Well, now I share a bed with my 14-year-old sister.
Yes, a bed. Not a bedroom. A bed.
Five of us are currently sharing a two-bedroom apartment with one bathroom.
My clothes, which used to breathe in a gigantic walk-in closet, are now hanging precariously on a rack in the laundry room. My poor brother’s bedroom is actually just one of the couches in the living room. And everything I’ve collected over the last 11 years of living on my own is now in boxes in my mom’s one-car garage.
But I love it.
I love that when I’m in pain there is always someone around to talk to me. I love that I when I’m feeling hopeless or sad or in despair, there is literally nowhere I can go to be alone. I love that I am always with people I love.
I love it when my mom comes in the and wakes me up in the morning because she knows that the combination of the sleeping pill I’m on the fact that my pain pills have usually worn off by 8 a.m. make it incredibly difficult to get out of bed.
I love it when we have lunch together and eat dinner as a a family and have ice cream nights.
I love it when my brother and my mom and I go for a three-mile walk and pretty much do a full-circle around the entire town of Byron, because it’s actually that small. And I love that they never complain about going super slow so they can keep pace with me.
And I really, really love it at night, when my little sister lays in bed with me and we turn on some horrible junk TV, like Obsessed with the Dress reruns on the Style Network, and then we talk about how crazy Beau is to the staff, and for a few minutes my pain signals are blocked off by sisterly love.
There is big difference between laying in bed alone, in the dark, in pain, wanting to die; and laying in bed in the dark, next to your sister, in pain and not wanting to die.
It’s three little letters. But it’s three letters I’ll take.
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.