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.



30 thoughts on “Still Here, Still Struggling

  1. There are no words for all that you have to endure. It’s hard to pay attention to anything or anyone else when your health suffers. I’d divorce new GI as well. The nurse didn’t do her job when you needed her the most. Just want to send you some love and hope that relief comes soon. ❤

  2. It’s just not fair! There has got to be some relief somewhere. I hope maybe new GI will realize that crappy nurse is making him lose patients and that his patients are suffering in the mean time. That’s not right to ignore you like that! They couldn’t have been so busy that they couldn’t call someone back who is as sick as you. I’m sorry. I really wish I could help you. I’ll continue to pray.

    • Yeah I think the new GI’s nurse was being a b*tch, though I can’t prove it. I didn’t like her tone when last I spoke with her and I’m sure she didn’t like my tone when I left a message the next morning, so I believe she ignored me. XOXO

  3. Maybe old GI could stress to new GI that you’re not in a position to be neglected right now? Their incompetence cannot be your concern or to the detriment of your care. Hugs and healing thoughts x

    • Oh I imagine old GI feels bad for new GI because old GI’s nurse is a f*ing genius and new GI’s nurse clearly sucks. I don’t think new GI stands a chance of hiring a better nurse, just based on what I observed of the office staff. Sucks to be him. XOXO

  4. Reading what your going through, it makes me realize how much I should treasure the things I have. I was complaining earlier about how sore I felt from my workout. It’s amazing the small things we take for granted.

    I’ll pray for this to ease. I hope some normalcy can return to your life.

  5. I tried writing a comment last night but came up woefully short. I want to be encouraging but I’m struggling. There is just so much. I want to honour instead how awful and LONELY this is. And let you know I care, love you, support you in demanding that the medical profession accept this is not living and not good enough or as good as it gets. F*ck.

  6. Gosh that labcorp girl sounded awful, so unnecessary to be so rude! I’m really sorry to read about all you are going through lately. Annoying too how the sushi place got some gluten on your order! Glad the babysitter will be able to help out when your husband is on his business trip.

  7. I read this last night and couldn’t find the right words to comment with. Honestly I still cannot. All I know is that my heart goes out to, living this way day in and day out must be so increadibly hard. I’m sending you all my love and hoping things improve asap.

    • Today (so far) is a nice reprieve from how sh*tty things have been lately. I took BG to her Little Gym class and had enough energy to participate. I’ve eaten well, toileted less, and pain is minimal. Today is a better day–I feel hopeful. ❤ XO

  8. Oh hon, I simply can’t believe all you’ve had to endure. It’s just unreal. I would have absolutely fired the new GI doctor too. His staff are a reflection of him and his practice. I’m sending you all the healing energy and vibes I have. Huge hug hon.

  9. I find it so shocking that you’re going through such an awful time with so little support from the medical teams who are meant to help. Surely their attitude can’t be sh*t happens (literally) and then leave you to get on with it. It’s not sustainable for you to keep living like this while trying to care for your family. They need to do whatever is necessary to help you and not just leave it to you to constantly chase for the support you need. Thinking of you and sending get well soon love x

    • Right?! I was aways under the impression that when you are “broken” modern medicine can “fix” you. I never dreamed I would be expected to live like this while waiting to see if the medicine works–can take up to 3 months and I’ve only been on it for 3 weeks (sick like this for 2 months). And then if the Humira doesn’t work then they will want me to try another biologic called Entyvio, which would then require another waiting period to see if it works… I don’t want to live like this for several more months… how the f*ck do people live like this for months and years??? I will surely lose my mind if I don’t feel better soon. Thanks ❤ XOXO

    • Hey chicky! I’m improving. I’ve had better sleep, more energy, and have felt much more emotionally stable for the past 3 days. Mr. MLACS’s business trip was canceled last-minute yesterday! That. Was. Awesome. How are you? XOXO

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