Still Here, Still Struggling

I dunno where to begin…bullet points perhaps?

  1. I took my 2nd dose of Humira on Saturday. I did feel immediate relief, but it was short-lived.
  2. Mr. MLACS was with us all weekend as he didn’t have to work. He gave me my injections, took BG to Little Gym, took her to the park, took us out to eat, shopped, cooked, cleaned, did laundry etc.
  3. I wanted, no, NEEDED sushi and hibachi grill in a way that I have never needed food in my life. So Saturday we went and I satisfied my craving. BG hated the hibachi grill (when chef puts on a show) even though we kept her 4 feet away from the grill when he flamed it. We took our hibachi to-go.
  4. I developed THE most excruciating pain in my anus, that I can only compare to a muscle spasm. I couldn’t sleep & Hydrocodone didn’t touch it.
  5. I’m trying to remember Sunday…but I really don’t. I believe I laid on the couch and Mr. MLACS took BG with him to the park and to run errands. She loved every minute of it. We watched Ariel the Little Mermaid and BG didn’t care. But she likes Kung Fu Panda, Zootopia, movies about dogs, and of course, Daniel Tiger.
  6. Sunday afternoon I got the chills and Sunday night I spiked a fever of 101.2. So I called the on-call line for new GI. Didn’t hear back for nearly 2 hours, but a doc eventually called and suggested Claritin and Tylenol. He told me to follow up with new GI the next day.
  7. I called and left a msg for new GI’s nurse first thing Monday. She returned my call a couple hours later and I told her about my fever, that I had dropped to 35mg Prednisone (not 30mg like new GI wanted), about the intense anal pain, increased leakage/incontinence, and I told her I needed refills on 2 prescriptions.
  8. I never heard back from new GI’s nurse on Monday. Then like clockwork, I got the chills and spiked a fever of 101 Monday night.
  9. Monday night was rough. A lot of pain and a lot of toileting. I have begun re-watching Sex and the City episodes to calm myself when I’m up late at night by myself.
  10. Tuesday morning I called the new GI nurse first thing and left an assertive message saying I spiked another fever and my symptoms were getting worse, and I needed to know what to do because I can’t handle it.
  11. I was ready to write off new GI and go crawling back to my current GI. I had standing lab orders from current GI and several test tubes to collect poop in, and given my symptoms I knew I needed to be checked for infections (especially c.diff). So I took the smelliest most disgusting poop and snapped on some rubber gloves to scoop it into test tubes.
  12. I cried. I threw myself at the Lord’s mercy.
  13. I could hardly get off the couch, but I was determined to do 2 things: 1. Take my samples to labcorp waaaay across town, and 2. Take BG to a park.
  14. I took BG to the park and all I could do was sit there with my head in my hands. I played with her some but I was counting the minutes after 15 minutes. I think I lasted 30 minutes. I felt awful.
  15. I knew BG would fall asleep in the car on the way to the lab–and that would mean I would miss my nap (as I nap with her every day now). I thought about going home. But I just kept driving to the lab–Jesus took the wheel on this one.
  16. I decided I needed a spicy tuna roll from a sushi place close to the labcorp. So I ordered one to pick up, and some seaweed salad.
  17. I arrived at labcorp thinking I could just toss my plastic bag of poop samples and walk out. I left the car locked and running in eyesight with BG sleeping inside.
  18. But I was told to sign in. Sonofabitch. I was feeling awful and stressed about BG being in the car. I was shaking. I was huffing and puffing. Could hardly walk. I definitely should have been in the ER. I kept checking on BG. Finally after like 30 minutes I was called. And the labcorp chick was SO annoyed that I didn’t have all my lab orders. WTF? They are sent electronically, why is this MY problem? I was literally laying my head on the counter while she b*tched about it. I asked to use the restroom and she denied me. I waited…until finally I had enough and said “I’m sorry but I have to go. I’m too sick to be here”. And walked to my car, got in, and let out a silent sob. I called Mr. MLACS and he talked me off the ledge. Told me to go get my sushi (I was considering just going home). But I started driving to the sushi place.
  19. Got good parking at the sushi place. BG was still sound asleep. Went in and got my stuff. Came out to car to unwrap it and eat some…there was panko crumbs on my spicy tuna roll. Gluten. Whyyyyy?! I was shaking. I had to eat NOW. So I started eating it. And then before I knew what was happening…
  20. I crapped my pants.
  21. I was wearing depends adult diapers though…
  22. So I kept eating my sushi. The seaweed salad was no good.
  23. I drove home, and BG woke up just as we pulled into the neighborhood. And as I was going to take her out of her carseat…
  24. I crapped my pants some more.
  25. I prepped the bathroom for a mess, which it was. But I got cleaned up. Got BG settled. Had another cry in the toilet.
  26. I STILL had not heard from new GI nurse. I was PISSED. So I wrote a very candid email “to whom it may concern” about the hell I was going through and my great disappointment in my doctor and staff. And wouldn’t you know it, about 45 minutes later the new GI nurse called. And I ignored.
  27. I fired off a message via patient portal to current GI’s nurse. Told her I had dropped off my lab samples, had dropped my Prednisone–probly too low at 35mg and going to try going back up to 40mg to see if it helps. And disclosed that I had seen a GI closer to home but was disappointed and definitely want to continue care with them–they are the best.
  28. Mr. MLACS came home from work and we had to rush to go sign the contract for our dream house to be rebuilt. I felt like death but managed not to crap my pants.
  29. I realized I had some sort of…cut? above my anus. It stung and was oozing a bit. Helped to put cream on it. I spiked another fever of 100.2, so, a fever 3 days in a row.
  30. Fell asleep with BG circa 9:30 and slept until almost 3am. Got up, struggled in the toilet, took 40mg Prednisone and some Bentyl, and watched some Sex and the City until 4:30am. Then went back to bed with BG until she woke up at 7am.
  31. Woke up feeling better. The 40mg of Prednisone must be the magic number right now.
  32. Huh, new GI nurse called at 7:30am, a full hour before they open. Ignored.
  33. Called the MA at current GI and left a message asking for refills and a call back. She called back and said no problem. *sigh of relief*
  34. Texted with friend who is dating a GI in the Midwest. He gave me some helpful suggestions.
  35. Played outside with BG and the dog. Grateful to feel up to it.
  36. Keep getting calls from new GI’s nurse. Keep ignoring. In the email I sent yesterday I said I would seek care elsewhere, so, we’re done here.
  37. Old GI nurse (rainbow unicorn that I love) called just to check on me! To see if I had started Humira and how I was doing. I told her everything about current and new GI’s and my issues. She was concerned and wanted me to talk to her doctor.
  38. So she calls back and YOU WILL NEVER GUESS who her doctor was on the phone with ehen she went to approach him about me–New GI called my old GI because they are “chummy” and he was worried about me. Old GI nurse encouraged me to talk to new GI, but I just can’t go back there. I don’t like his nurse. She failed me on my worst days and also she is kind of a robot. I need a warm and trusting relationship with my GI nurse. I was off to a rough start with current GI nurse, but we ironed things out and I trust her and the MA and the doctor.
  39. I told old GI nurse about the “cut” above my anus and she said it could be an abcess or something so I need to be seen. Yay.
  40. So I messaged current GI nurse about it.
  41. Mr. MLACS tells me he has to go on a business trip Mon/Tues/Wed next week. All the color drains from my face. I tell him I can’t do it alone. He asks if I want help. Uh, YES. So I text my babysitter (whom I haven’t used since mid-December) and asked if she can come over from 4-8pm Mon/Tues/Wed to help with playtime/dinner/bath. She said YES! Thank God, because I have no one else I can count on here. Which is sad.
  42. I get it though, I’m trapped in this bubble of negativity. Laugh and the world laughs with you. Cry and you cry alone. I’m used to it.
  43. I’ve been EFT tapping trying to clear my negative energy and make way for healing. I do it in my sitz bath at night. I am trying, I really am.
  44. But I still cry. I grieve the loss of normalcy and control over my life. I miss coffee. I miss waking up feeling all the possibilities of the day with my little girl. I miss working out. I f*cking miss grocery shopping.
  45. My EFT mantra:
  46. I am lonely. I am afraid. I am ashamed. I am angry. I am tired. I’m sad. I’m confused. I’m weak. But even though I have all these negative feelings, I leave room for the possibility that I might deeply and completely accept myself, disease and all. I want to heal. I want to feel better. I want to accept myself.
  47. And now, I have to get out of the sitz bath and deal with whatever happens tonight. And tomorrow. And every night until I am healed.
  48. I do thank God that this is happening to me and not my baby. Better me than her.
  49. My face is getting round from the Prednisone and my adorable short haircut is now shaggy and disheveled all the time. I don’t look good.
  50. I had Mr. MLACS get pizza hut tonight. I am trying to eat healthy (and did get veggies on my gluten-free pizza) but I didn’t make it to the store like I’d planned. So, pizza. And sprite.

XOXO,

MLACS

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White Knuckles

It’s been an interesting few days…

I got worse over the weekend. The more I declined, the more meds I was taking to try to make it bearable. I went from taking 1/2 Hydrocodone to whole Hydrocodones. Popping Bentyl like tic-tacs. And counting the minutes until I could take my next dose of Prednisone.

I felt like a zombie, and despite my efforts I was still in a lot of pain. Waking up every hour at night, rushing to the toilet until I could take my first dose of Prednisone–I started taking it earlier and earlier, like at 2am. After taking it I could sleep for more than an hour, but I’d wake up soaked with sweat, and scrambling to make it to the toilet, trying not to wake anyone else in the house. I started having more intense cramps and my hemorrhoids became very inflamed, and it was hard not to cry out.

Mr. MLACS had to go into work both days this weekend, and both days I had to ask him to come home by lunchtime because I was feeling awful and nodding off. He took BG to the park and did everything else too, while I lay on the couch in between trips to the toilet, sipping my apple juice and pedialyte and taking drugs like I was Lindsay Lohan.

Does it sound glamorous? It’s not.

Sunday was insane.

I had not had a bowel movement in at least 3 weeks. I also had not eaten more than a few bites of solid food. But all of a sudden, my cramps became unbearable and I spent the day sh*tting my brains out. So crazy because the blood just *stopped* when the poo started. Every time I ran to the toilet my heart raced and I felt on the verge of a panic attack. Then when it was over, I would collapse on the couch.

I started having a hard time making it to the toilet–incontinence–and began wearing depends (adult diapers). They’re actually quite comfortable, though I feel embarrassed about it.

Monday came and I’m so grateful that Mr. MLACS stayed home from work so he could take me to see the new GI and care for BG. He’s doing everything. Groceries, pharmacy, meals, bath time, play time, Little Gym, getting me whatever I need–he’s been strong and gentle.

So Mr. MLACS and BG dropped me off at my appointment and went to go buy pet food–BG is in size 3T now so I also asked Mr. MLACS to go to Carter’s and buy some play clothes.

The New GI is relatively young, maybe 40 years old, and not bad looking if you’re into “frat boys”. I came armed with my meticulous medical records, organized from 2004-present. He was impressed and mentioned that he knows some of the more noteable GI’s I’ve seen, like called them by first name “Oh yeah, I saw Matt last weekend at a conference!” And I’m like, “Who is Matt?” because I don’t call doctors by their first names.

Then we got down to it. He was not amused that I had raised my own dose of Prednisone to 60mg (because I was honest) and first off said I’d have to follow his care plan. I pointed out that I was scared, had gone to the ER, and my current GI wasn’t available–I usually follow care plans to the letter.

Then he told me I needed to drop the Prednisone from 60mg to 40mg immediately. Said anything over 40mg is basically a placebo and has no real value. He said after that we’ll slowly taper off of steroids. This raised the hair on my neck because I’m thinking “If I can barely get through the day now, how awful will it be if I crash from cutting 20mg at once?” After I had just agreed to follow his care plan. Sneaky bastard.

Then he told me that he doesn’t prescribe pain meds for his patients because they have more negative outcomes. I balked at that and said “I can’t do it without them!” He dropped it, but I realized he would never give me a prescription for it.

Why did I come here???

He said never go to the ER, always come to his office for whatever I need because “ER’s will just give you c.diff”. Which is cool, and there is an on-call 24/7 (I have none of these resources with current GI).

I mentioned my hemorrhoids. I have “thrombosed hemorrhoids” and they are very, very painful. New GI got me a consult with a colorectal surgeon the same week, to see about lancing them (ouch). He told me to take 2-3 sitz baths per day.

He asked me if I was going to continue care with him or see current GI, and I said “you”. Although, I wasn’t at all sure and it was stressing me out.

When Mr. MLACS and BG picked me up, they had a huge bag of play clothes from Carter’s. He picked out some cute stuff! I know I shouldn’t think like this but it’s reassuring to know that Mr. MLACS can handle everything without me.

I skipped my afternoon dose of Prednisone. And I was…ok. Tuesday was a blur though. I had a Valentines party/playdate to take BG to and I needed goodies to pass out. I had Mr. MLACS buy annie’s organic bunny fruit snack packs. But I didn’t like the valentines he chose (not that he had much choice the day before V-day). So I mustered my strength and made my own to stick on BG’s fruit snack packs. I got us ready to go, but I was huffing and puffing and feeling like I was climbing Mt. Everest. The party was lovely and the hostess went above and beyond with details. BG was happy to munch on the snacks and play with the kids. I, however, kept looking for places to sit down. I had a difficult time talking to the other moms, and they could tell I didn’t feel well. I managed to stay an hour. Then home and crumpled on the couch. I was hungry but nauseous. Panicky but lethargic. My hands wouldn’t stop tremoring. Somehow BG and I managed until Mr. MLACS got home from work.

But things got worse.

It seems I couldn’t make it to the toilet anymore, and I kept messing my depends. I probably wentbto the toilet 15x that day. I was in a lot of pain. And I felt like I was losing my mind. I came out of my sitz bath and fell sobbing into Mr. MLACS’s arms, and I said

I don’t want to do this anymore.

And what I meant is, live like this. I just felt so hopeless. Powerless.

Desperate.

I took 1/2 Hydrocodone and tried to get comfortable on the couch. I woke up at 12am, 1am, and 2am and urgently ran to the toilet–there was less blood, and less pain. But I needed SLEEP so I took my 40mg of Prednisone at 2am to quiet my colon, and I went to sleep with BG in the bed. And I slept 5 hours in a row! For the first time in weeks.

I felt less panicky today and more able to get up and move around (like to make BG breakfast and supervise her art project) without having to bolt to the toilet. Mr. MLACS left work at lunch to take me to the colorectal surgeon consult. He and BG dropped me off and went to play at a park.

I was surprised to find the surgeon was a reatively young woman (30’s I’d guess). Since I was there and curious about the surgery options for my disease, I took the opportunity to ask her (none of my GI’s will discuss it). She said she has better outcomes doing a 3 part surgery, which is

1. Remove colon and create a stoma for a bag (as in, poop in a bag).

2. Remove the anus and fashion the j-pouch

3. Reconnect intestines to the j-pouch and close stoma so patient can go to the toilet “normally”.

She didn’t think I should do anything more to my hemorrhoids at this time, but she gave me prescriptions for a lidocane cream and hydrocortisone cream.

And honestly, today has been better. Less visits to the toilet. Less blood. Less pain. Enough energy to make dinner (enchiladas) and an APPETITE! I ate like 3 enchiladas with sour cream snd avocado, and it tasted like *heaven*.

I should mention: I have lost 22 lbs in 22 days and I am weak. I want to get my strength back.

Then, Mr. MLACS had sweetly ordered chocolate covered strawberries from a store in my hometown, and they were delivered today. And I ate one. And it was scrumptious.

So it appears this new GI was right. It was good to drop from 60mg to 40mg Prednisone. It was good to stop taking Hydrocodone round the clock. My symptoms have improved.

I got my replacement Humira injection pen in the mail today. I will take my 2nd loading dose (2 injections) on Saturday and I can’t wait. I hope it makes a big difference.

I just have to get through Thursday and Friday. If you are the praying type, then prayers are appreciated.

XOXO,

MLACS

 

 

 

 

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.

XOXO,

MLACS

 

 

 

 

Unglued **trigger**

I called and thoroughly b*tched out both my CVS Caremark representative and CVS Specialty pharmacy (the people actually responsible for getting me my Humira). I was on hold for 40 minutes but I finally connected with the person who arranges payment and delivery, with overnight express shipping.

That night, Mr. MLACS flipped out on me for critiquing the way he was washing BG’s hair. He wouldn’t stop yelling and he said some hateful things–like basically I’m useless and need to STFU since he has to do SO MUCH more. If I could have divorced him right that instant I would have. He was despicable. Of course all this took place in front of our kid. Humiliating. I wanted to die.

Seriously, I wanted to die. I actually thought about it–that I am broken and ready to fly away. The Prednisone is really good at amplifying negative feelings.

He didn’t apologize. He kept telling me “What about what you did” but wouldn’t be specific (because I actually didn’t do or say anything mean to him. My offense was that I annoyed him). We went to bed mad, myself in tears.

We woke up and things were tense. He was smug and pretended to be chipper. That ate at me. We argued some more–I asked him to quit being mean. I was shaking. I went to do BG’s laundry.

And I came unglued.

I couldn’t stop shaking and crying. I ran to find my suitcases and I just started throwing things in them. At this time Mr. MLACS asked me “What’s wrong”, after he just finished telling me that he doesn’t care that I’m upset and that I deserve it and he’s not sorry. He came after me and I roared for him to stay the f*ck away from me. Every time he touched me I roared and pushed him away. Until I collapsed on the floor. BG didn’t see any of this but I know she heard.

The only person I hated more than Mr. MLACS was myself.

Mr. MLACS was clearly terrified. He had obviously thought he was playing some sort of game of wits with me. But no. I was so mentally and physically unstable at this point (day 12 of not eating, in pain, on corticosteroids), I had barely a shred of sanity to cling to.

And as I sat on the bedroom floor sobbing, I clung to that shred of sanity. But my dignity was non-existent. I wanted to die.

It hurts to write this. HURTS.

I was sobbing “Why couldn’t you just be nice to me? Why did you have to be so mean? I’m so weak. I have NOTHING left.” He had a look of remorse on his face, and he held me. That’s all I had wanted, for weeks–to be held and reassured. I wasn’t getting it from him. He was resentful. He felt like I was taking advantage of him by asking him to do his part and mine.

Why did I have to lose my mind before my husband could comprehend how I was struggling and show some compassion?

And then, the doorbell rang.

The Humira.

I was still shaking and freling like I was in the twilight zone.

But Mr. MLACS accepted the package and proceeded to open it and ask me what to do with the various parts. I received 6 Humira pens, and I needed 4 of them to come to room temperature so I could inject them. The others went in the fridge to be stored and used in 2 weeks.

I was nervously practicing with one of the practice pens the Humira nurse had provided–I had 2 practice pens, and BG had claimed them as toys. It makes me cringe (her playing with them).

Finally I decided to do it.

Mr. MLACS ushered BG away from the bathroom. And I pinched my skin, and pressed the trigger…

And it scared the sh*t out of me, I pulled the pen away from my skin, and the medicine ejected all over my bathroom.

Like, I should be the poster-child of what NOT to do with a Humira injection.

I was shocked.

I called out to Mr. MLACS and he and BG came running into the bathroom. I told him I needed him to do the injections. And take one of the pens out of the refrigerator to come to room temperature.

So he backed me up against the wall, pinched my stomach fat, took aim and fired…

It didn’t even hurt.

I looked over at BG though, and she lifted her shirt and used one of the practice pens to give herself a shot in her belly. She did it exactly right.

My heart broke into 1,000 pieces.

Mr. MLACS tried to reassure me that it’s no big deal to her. But it’s still sad and pathetic to me. Humiliating.

Mr. MLACS successfully administered the 3 remaining injections.

And we waited.

Oddly, I felt relief almost instantly. And over the next 24 hours my symptoms improved. I didn’t even need to take my Bentyl + Hydrocodone (for cramps/frequency) at all on Sunday. I had a couple blood-free toilet sessions.

But yeah, I knew it was too good to be true. My symptoms came flooding back in the wee hours of Monday morning. They are improved, but not to where I’d feel comfortable dropping my Prednisone dose.

I had emailed the b*tchy GI nurse and told her about the Humira. Told her I was on a liquid diet and had lost 13 lbs in 13 days. She’s all “Don’t expect too much, try to eat some solid food, try to drop from 60mgs Prednisone to 50mgs, yadda yadda”. Or, she said I can wait until my next Humira injections in 2 weeks, and then drop the Prednisone. I want SO badly to start weaning, but I can’t handle the cramps. They are so f*ing painful–debilitating. Like being in labor.

I told my Humira nurse that I f*cked up  my first injection (despite her thorough tutorial, practicing, and watching youtube videos). She was nice and have me a number to call for a replacement pen, and I called first thing Monday morning. Should be in the mail.

I have been lurking on online forums for Ulcerative Colitis, and I got some good info. I am concerned that I will flare when I try to drop the Prednisone. But I need to get off of it–it is the devil. So someone suggested adding an immunomodulator, such as 6MP or Imuran. I had heard of them but didn’t know anything about how they work. Turns out, they lower your white blood cells (thereby lowering inflammation) and could help quiet my immune system while I wean off Prednisone. They are also used to keep people from developing antibodies to Humira–once you have antibodies the medicine won’t work.

So I bypassed b*tchy GI nurse and sent a message to my GI doctor via the patient portal. I asked him if I should consider immunomodulators. I also asked that he give me another prescription for Hydrocodone, or refer me to a pain management specialist–I’m only taking 2 pills per day (5-325) and I split them in half to make 4 doses. So not a lot. But I can’t make it through the day/night without them. He’ll probably want me to make an appointment to discuss things, and that’s fine. But I wanted to write him so I might fully articulate myself.

Due to my medications, I’m hardly nursing BG. I’ve also been sleeping on the couch and letting her have the big bed to herself–works better for both of us because I don’t disrupt her, she doesn’t wake up and try to nurse at night, and the couch is pretty much the only place where I am comfortable. If I had my sh*t together I’d try putting her in her big girl bed. Due to my immune system being down, I have a cold sore, so I can’t kiss her. And I miss her. I miss feeling connected to my baby. I miss the cuddles and nursing. I feel horribly guilty for pushing her away right now.

I try to retain a sense of ‘normalcy’. I fed her a good breakfast. Got us both ready and took her to the little gym today. Fed her a good lunch (dinner I managed to cook last night). But I had laid down with her to nap, and I had to jump up and run to the toilet, which woke her up prematurely. And we were both grouchy. I let her watch 2 hours of Daniel Tiger until Mr. MLACS got home. I haven’t fixed dinner. I’ve just laid here on the couch with tears streaming down my face as I write this.

For the record, Mr. MLACS has been much more agreeable and now often asks me what he can do for me. I guess he just had to see how broken I am. Mostly I just want him to create space for me to focus on my needs. Not expect much or be disappointed. He is doing a great job being there for BG and the pets, and taking care of our affairs (getting things moving to rebuild the house) and all the mundane things–grocery shopping, dishes, laundry. I’d be completely lost without him.

I’m mostly lost.

XOXO,

MLACS

 

 

 

 

 

 

 

Is Everybody Pregnant?!

From my facebook newsfeed, it would appear that everyone is expecting.

Now pregnancy announcements don’t usually phase me much since I’ve been blessed with my BG. Sometimes I feel a small pang of jealousy, but I never brood over them (like I used to during my RPL and IF days).

I mean, I couldn’t even fathom having another baby until BG was about 18 months old. So why would I be concerned about how others are growing their families? I wasn’t.

But then today…there was a *surprise* pregnancy announcement…

This friend was married maybe a month after Mr. MLACS and I were married. She had two children and said she was done. She even chided me over the summer, “Don’t wait too long to have another one! If you don’t have another by the time BG is three years old then you won’t want to!” For whatever reason, those words stuck with me.

But guess what?!

She’s pregnant with baby #3 and due in August!

Yayyyyyy.

Now that I want to be pregnant but am ill-advised to try until my disease is under control…I felt it. A mixture of panic/confusion/jealousy/melancholy, and most of all–resentment–because it took me by surprise.

I think in IF/RPL, sometimes it feels like we are playing “musical chairs” and there are only so many babies to be awarded–we can’t all ‘win’. And I was in the game, circling, waiting for the music to stop, ready to claim my chair…

And this chick came out of nowhere and snatched MY m*therf*cking chair!

Does anybody feel me? It’s irrational to think and feel this way but I cannot be the only one, right???

In other news, CVS specialty pharmacy is taking their sweetass time getting back to me to arrange payment and delivery of Humira. I’ve called every day for the last 3 days. They made a note in my chart to “expedite”, but clearly no one gives a f*ck that I desperately need this medication. CVS specialty pharmacy gives me attitude and they sound condescending, as though I am being unreasonable to expect to receive my medication within a couple days of ordering it. They keep telling me that the time frame from when they approve the prior authorization to when I receive the medication is normally a week.

But my nurses, both my Humira Nurse and my former “unicorn” GI Nurse, have both said it shouldn’t take that long. So I am going to call CVS specialty pharmacy today and ask for a f*cking manager.

Fuck you, CVS Caremark.

F-U-C-K   Y-O-U!

XOXO,

MLACS

 

Humira Approved!

The title pretty much says it all–my insurance company has approved my request for Humira! It’s only going to cost me $5 and Humira will pay my deductible so ALL my medications will be cheaper!

Yesterday was rough. I was house-bound with BG all day, and the only way I could keep from running to the toilet was to lay on my couch with my feet up. I felt bad for not playing with BG and letting her watch cartoons all day while I was on my cell phone researching, but mostly trying to distract myself from the waves of cramps and pain from my toileting. I’m quite sure that the fact that I was ovulating yesterday played a huge roll in my increase in symptoms. Oh the irony–I am finally mentally/emotionally ready to become pregnant again, but my UC is preventing me from trying. I’m a little bitter.

Months ago I had purchased tickets to see Daniel Tiger–paid almost $300 for front row seats–and the performance was last night. I was not sure I’d be able make it, and that was stressing me out. My BG is completely obsessed with Daniel Tiger and I was dying to see her face when she spotted him on stage, live and in color.

Luckily, my last dose of Prednisone/Vicodin/Bentyl worked (it f*cked me up, but it worked) and I was able to get myself dressed and put on a bit of make-up while Mr. MLACS fed BG dinner and gathered our things (snacks–when you have a toddler you have to be in possession of snacks at ALL times).

We arrived and Mr. MLACS went straight to the souvenir stand and purchased a Daniel Tiger hoodie and a poster for BG–good thing because they were going to sell out. We found our seats and could hardly believe how close we were to the stage. BG was completely awe-struck upon realizing that Daniel Tiger and friends were within arms reach! She sat on my lap and I bounced her and sang every word to every song. Sometimes she looked entranced but then she’d snap out of it, turning to me and Mr. MLACS, she’d smile and giggle with delight ❤

Afterwards, we got to meet-and-greet Daniel Tiger. My kid is a real “fan girl” and raged when we wouldn’t let her cut the line and rush up to him.

She slept in her DT hoodie and has worn it all day, even though it’s 80 degrees outside. I’m not arguing with her today but I forsee many battles re: the DT hoodie in the near future.

I can’t believe I made it without having to go to the bathroom until we arrived home–a real miracle. I even managed to retain my enema for several hours after I went to bed (which has been impossible lately, but it really helps).

But I woke up at 5am this morning  doubled over with cramps and hobbling to the cabinet to get my pills. Luckily BG slept in until 8am, and by that time I was functioning and had her breakfast ready for her.

I’m not so sure about Apriso. At the beginning of this flare I switched from Pentasa to Apriso, and I think some of my symptoms are worse because of it. The Apriso is targeted to the lower colon (proctosigmoid) where I show inflammation (confirmed by 4 colonoscopies). But I’m having painful gas and bloating much higher up. So then, maybe I need a medication that covers the whole colon in order to keep the disease in-check.

So I called my GI nurse and she called me back on my way to take BG to a playdate at the park. GI Nurse was annoyed that I had called and clearly did not want to discuss anything with me. She actually said “I have a hundred patients and I can’t talk to you every day”. I get it, but I was still offended. I told her the truth, “My last GI nurse wanted me to check in with her all the time, at every step. But I get that this situation is different. That’s fine.” Then she backtracked and was like “Oh you can always call me if you have a question or need something”, which is redundant because WHY the f*ck else would I call her?! We’re not friends.

I told her I don’t like calling and I’d rather just email her anyway, that way she can get back to me at her convenience and I’m not waiting for the phone to ring–my last (awesome, magnificent, rainbow-unicorn) GI nurse and I emailed constantly. The current GI nurse sounded relieved and said I should use my patient portal account (which I had not received an invitation to). Why didn’t SHE think of that *before* lecturing me about calling?! I’m not impressed.

Then about an hour later she messaged me through the patient portal that my Humira was approved! Woohoo!

I called my insurance and they said they are just waiting on a prescription from my doctor, and said it would be quicker if it was called in as opposed to faxing it. I messaged GI nurse to thank her for her time and attention and to pass along the number she could call the script into.

If GI nurse sends my prescription today, then my hope is that I can receive it tomorrow (rush delivery) and have the Humira nurse come and administer my loading dose on Friday.

F*ck I hope this works.

If I end up needing a colectomy, the best surgeons are at least 5 hours drive, but there’s some good ones 1.5hr drive. I’m already researching surgeons. I want to be prepared.

XOXO,

MLACS