Adrift On The Isle of Couch

I’m feeling disconnected.

This is partially because I’m going through something traumatic–the biggest health crisis of my life.

Partially because I am on pain meds that make me feel stoned–in stark contrast to the corticosteroids that flood my body with adrenaline and cortisol and make me anxious.

Partially because I’m starving. I have lost 17 lbs in 17 days.

Partially because I just moved to this area 6 months ago. I live in a rental home (which I don’t love) and nothing feels familiar.

Partially because the people who know me best and still love me at my worst are 12 hours drive away, in my hometown.

I’m sure there’s more reasons I could think of to explain why I feel lost, but these are enough.

I’ve lost perspective. I don’t feel grounded. That makes it really stressful to make decisions.

I don’t trust myself. Or my body. I know that’s really bad, because supposedly disease comes from a disconnect between mind-body-soul. So being pissed at my body and disappointed in my mind is counterproductive to healing.

But seriously, I got my f*ing period today, full force, a week early.

Clearly, my body hates me.

I had a rough day Wednesday. By the afternoon, I was freezing and couldn’t get up off the couch. I had BG bring me books to read her, she made us a tea party, we sang songs and she danced, we watched the Wiggles. I asked Mr. MLACS to come home ASAP, and he did. That evening, I spiked a fever. We only had a temple thermometer and it read 97.3 degrees, and I knew it wasn’t right because I was burning up. So Mr. MLACS went and got an oral thermometer, and it was 101.3 degrees.

Which is a BIG red flag when taking Humira and Prednisone. It indicates some kind of infection, which can easily get out of control because my medicines weaken my immune system.

I knew I would be told to go to the ER, and I didn’t want to go. I wanted to put my baby to bed and stay on my couch “island”. I didn’t want to go in there and explain, again, to nurses and PA’s and MD’s galore, the mundane reason for my patronage–a fever. I put a call in to my Humira nurse and also called the nursing hotline provides by our insurance. Hotline nurse said I should go. But I decided not to, and I popped a Hydrocodone (which contains tylenol) and waited…my fever fell to 99.8. Then Humira nurse called and I told her the fever broke and I have an appointment with my GI tomorrow anyway, so not going to the ER. She said ok–unless I spike another fever–then I needed to go immediately.

Luckily, I didn’t spike another fever.

I saw the current GI the next day (Thursday). Mr. MLACS took the day off work and we made the trip as a family–there’s no way I could have managed on my own.

When we arrived at the appointment, I had Mr. MLACS drop me off and sent him and BG to a fabulous city park to go play.

I walked in the office and it was full. With one obnoxious lady being very loud on the phone. I had been sitting in the car for 1.5hr and sitting isn’t comfortable for me. I sat awkwardly in a chair and sipped my apple juice + pedialyte. And luckily I was the next one called–I think the nurses took a look at me and decided I needed a room.

The MA asked how I was, and I looked at her crazy and said “Miserable”. And stepped on the scale as she was telling me it will be ok… I looked and I was down 16 lbs in 16 days, and I started to cry.

The MA ushered me to my room and asked about my medications, did blood pressure, yadda yadda. I asked her in confidence if the doctor might consider working with another GI that is closer to where I live–it’s hard for me to make the trip so often, and I never dreamed I would need to be seen more than a couple times per year. She said to ask him. And I told her I might but not sure I had the courage, in case he might be offended.

I sat in the room on a chair for awhile, but eventually a lightbulb went on and I curled up on the examination table. Naturally, the GI doc came in just as I had made myself comfortable.

He asked me a bunch of questions. And I asked him my questions:

Q: Should I consider adding an immunomodulator (6MP, Imuran) to further suppress my immune system and help me wean from Prednisone.

A: Cannot consider them at this time because I spiked a fever and that is is very very bad.

Q: I can’t get through the day without pain medication and I don’t have much left. Will he prescribe more or refer me for pain management.

A: He gave me a script for 60 more Hydrocodone.

Q: How bad off do I have to be before they’ll admit me to the hospital? I’m ready now. I want to sleep and be monitored and tested and have good pain meds at the press of a button.

A: If he thought they’d admit me, he would have done so sooner! But alas, “the good old days of medicine are gone”. But he said never hesitate to go to the ER, for any reason–if I need fluids, or the pain gets worse, or if I feel mentally unstable (how did he know? is it that obvious?) or panicky for any reason, GO. And if I spike a fever, GO.

Now that I have GI doc’s  encouragement and my deductible is met, I will feel free to waltz into the ER whenever I feel like it.

Q: What about a colectomy? And j-pouch surgery? When do we start talking about getting rid of this thing?

A: My disease has only shown inflammation in the last 6 inches of my colon/anus (so, Ulcerative Proctitis). Should be manageable. I should want to avoid surgery as long as possible…(and flood my body with massive amounts of drugs with side effects instead).

The so-so nurse asked me how I was and gave me a look of sympathy on my way out. I almost cried but instead I managed “hanging in there”.

GI doc ordered a chest x-ray to make sure I don’t have latent TB or pneumonia, etc. and I was told to go to their imaging clinic in the adjacent hospital.

This required me to “register” as a patient and by this time I was starting to feel bad–pain and exhaustion. I literally shrouded my face with my hoodie and curled up on one of their tiny, uncomfortable waiting room couches until I was called. Shamelessly.

Had the x-ray and called Mr. MLACS to pick me up. I urgently had to go to the toilet first though. There was a lady in there washing her hands, and luckily she was out of there before I “exploded”. Shared public restrooms are a nightmare because of the insane sounds that escape from my bum.

I hobbled out of the toilet–yes, hobbled, because my swollen rectum and cramps make it hard to walk upright. Mr. MLACS picked me up, and about that time my Bentyl + Hydrocodone kicked in and the pain subsided.

We decided to stop at Qdoba for dinner on the way home, because I was craving it and BG likes a burrito bowl too. Ironically, I ordered BG a full-sized bowl and myself a kids-sized bowl. It was just rice, beans, chicken, cheese, and a touch of sour cream and guacamole.

I hadn’t eaten anything I wanted in almost 2 weeks, and it tasted like heaven. I stopped myself at half though because I didn’t want to be super sick.

I woke up this morning and practically ran to the kitchen to eat the other half!

Then I realized I had gotten my period–leaked on the couch no less. And that must be why I was craving food so badly.

I ate one of BG’s organic apple+banana squeeze packs too.

And since I had to go to Labcorp to pick up stool collection kits for more tests the GI ordered, I decided today was a good day to try the Pho Vietnamese restaurant just around the corner. I got brisket Pho (didn’t want to do raw meat at all). It was delicious. I couldn’t finish half.

But oh, did I pay for it. Bloated. In pain. Not sure if I would crap my pants on the drive home. Luckily BG fell asleep in the car and I left her in there (parked, garage open on a culde sac) while I blew up the bathroom, and then tried to recover on the couch. Then I brought her in and we napped together for another hour+.

I looked around and found a local clinic and made an appointment for Monday with a GI that supposedly specializes in IBD. They have a video of him on their website and he comes off a bit “douchebaggy”.

My current GI has better credentials and he has treated me well. But I just want to see what this doc has to say. So I guess I’m getting a second opinion. But thinking about establishing care? See I do NOT want to be making these decisions right now.

I could really f*ck things up.







11 thoughts on “Adrift On The Isle of Couch

  1. It truly all sounds like hell. So amazed you are hanging on to any shred of sanity. I only hope some kind of reprieve is coming. Your husband sounds pretty stand up. Glad he is so supportive.

  2. Sorry I’ve been offline so long. You’ve been in my thoughts, prayers and heart the whole time. I don’t know what to say… except I really hear you and wish there were an immune disease fairy for me to hire and come support you and help with BG, the animals, life. And make appointments and do doctor and any other desired research for you. This prolonged health crisis is soul crushing. Let alone all the physical ramifications. I kind of like the GI you have now but so wish it wasn’t such a drive. And that he had a warmer and more meaty nurse (for lack of a better word). So much love and tenderness streaming your way.

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