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

 

 

 

 

 

 

 

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

ER Twice In One Week

20170129_133616Both times it was to get STAT labs done, with negative results. I don’t regret going to the ER twice this week, but I am frustrated that I spent time and money only to find that I’m having an acute UC flare (of which I was already aware).

After I wrote about being super f*ing sick on Thursday, I felt strange and weak. So I decided to go to the ER to be checked for anemia, as I had been bleeding a lot and my GI nurse had suggested I go to the ER on Monday. So I went, they drew blood, poked me, started an IV and gave me fluids, and I was quite surprised that they gave me Morphine for the pain. I am not anemic. At all. In fact my Hemoglobin was 14.3, which is high/normal. WTF? How can this be when I’m bleeding so much? So I was released.

I decided to take 60mg of Prednisone and it has been helping–particularly my morning dose of 40mg (the 20mg evening dose is not as effective). Going to the bathroom less frequently and having less pain throughout the day. I have also put myself on a liquid diet, which sucks. I haven’t eaten solid food since Wednesday. Instead I drink apple juice mixed with pedialyte, water, and a cup or two of hot cocoa. Luckily the Prednisone curbs my appetite and gives me energy, so I’m not dragging too badly from not eating.

But I am hungry. And I am tired.

BG woke me up at 4am this morning and I couldn’t get back to sleep. I had posted on an IBD forum and one of the people who responded said I need to be checked for C.diff. At first I blew it off, but then I realized my recent symptoms have been very atypical for me. All this watery diarrhea, blood, and cramping. And I had just been on antibiotics for my vaginal tear, while also taking steroids–this often leads to a C.diff infection. I also know that taking steroids while infected with C.diff is THE worst thing you can do, so I decided I have to be checked at the ER today, because otherwise I couldn’t have the test until tomorrow and it would take days to receive results.

So here I am.

In the ER.

Again.

My C.diff test was negative. Which is good. I’ve received a full bag of IV fluids, which is also good because I’m losing a lot of fluids. The nurse just gave me a shot of some anti-spasmodic in my butt. That hurt. But if it keeps me from having debilitating cramps and running to the bathroom then I’m all for it.

The ER Nurse says I’ll be out of here in 15 minutes.

The Humira Nurse came to my house on Friday to talk about how it works. I need to talk to my GI Nurse tomorrow morning and see if my insurance has approved the Humira. I’m hoping to get approved, have the medicine shipped, and have the Humira Nurse come to my house and help me administer my “loading dose” this week. Might be wishful thinking to get it started this week. But fingers crossed.

And then, pray that it works.

XOXO,

MLACS

 

Close Call (sick as f*ck)

BG woke me up this morning at 5am, and I could feel it–the war inside of my body.

I was uncomfortable, my guts churning, cramping, with the building urge to defecate. I felt dread. BG wanted to nurse and snuggle (per usual) and I just wanted to get her settled back to sleep before bolting to the bathroom. I lay there, fighting the urge, for 20 or 30 minutes. BG was just on the cusp between sleep and awake, and I knew if I moved that she would startle and cry when she realized I was gone. But I couldn’t hold it any longer. I ran to Mr. MLACS’s room (he sleeps in the guest room since I cosleep with BG) and I told him “I’m sick, go lay with her” as I rushed into the guest bathroom. I heard her crying and I began to cry too…silent tears, muffled sobs.

Immediately the toilet bowl was crimson with blood.

I couldn’t stop bearing down–it was like a contraction. Waves of contractions that I was trying to breath through. And the pain–the pain of my hemorrhoids and my swollen bloody anus, as I was bearing down under these waves of contractions–is excruciating.

The contractions finally slowed enough for me to get up from the toilet. But I felt no relief. I tried to sneak into the master bedroom because all my meds are in the master bathroom, but BG was not asleep and she saw me creeping across the room. I felt defeated as I rummaged through my drawer and held the prescription bottles up to the nightlite to be sure I had the right ones. I popped 20mg of Prednisone and two Hycosamine tablets. BG sat up as I exited the bathroom and cried out to me. I told her and Mr. MLACS to go ahead and get up since she was awake and he needed to get ready for work.

I curled up in the fetal position on the couch and tried to look chipper as I said “Good morning baby” to BG. But it wasn’t long before I had to run to the bathroom again. More blood. I began to feel shaky and panicked, like things were not ok.

Again I exited the bathroom and sunk into the couch, curled into the fetal position. Mr. MLACS asked if he should go to work and I looked at him, exasperated, and said “Well you can’t just stay home every other day for me”. I felt ashamed. Pathetic. Desperate. But I tried to muster courage and hope, that the Prednisone and Hycosamine would soon bring me some relief and allow my to care for myself and my child.

He left for work and I had to run to the toilet again. More blood. So much blood. I was shaking. I knew I wasn’t ok. What do I do? Do I try slamming a couple more Prednisone (renegade without consulting my GI nurse)? Is it time to go to the emergency room? When do I surrender? What will happen if I do? What will happen if I don’t get help…

I decided to pull a Hail Mary and slammed 20mg more of Prednisone.

Time stood still as I waited to find out my fate.

Within 5 minutes I could feel my immune system “retreating” from battle. I could feel the bleeding stop. The pain subsided. The contractions stopped. And that’s when I realized how close I had come to being hospitalized. To needing a blood transfusion. To NOT being ok.

I’m so grateful that the prednisone worked. And I kick myself because I KNEW 20mg wasn’t enough in the first place. I knew I should’ve dropped the Uceris and replaced it with 20mg of Prednisone. I just didn’t want to argue with my nurse.

I’m upping my Prednisone to the max dose of 60mg/day. I’ll take 40mg in the morning and 20mg in the evening. My nurse is out of the office until Monday and by then I’ll know if it worked, and if it worked and she’s pissed I didn’t follow directions then she can kiss my ass. The Humira isn’t even approved by my insurance yet (and obviously since my nurse is gone until Monday nothing will happen before then). Plus I doubt Humira would put me in remission if Prednisone can’t, since Remicaid didn’t work for me. I need to be under control before I start it.

I don’t care about the weight gain, the insomnia, depression, moon face, and all the other sh*tty things that come along with Prednisone. I just want to stay out of the hospital. I just want Mr. MLACS to go to work. I just want to take my kid to the Little Gym for her class in an hour. I just want to fix dinner for my family. I just want to live my life OFF OF THE TOILET.

XOXO,

MLACS

 

Cautiously Optimistic

I’ll just start with the good news–my GI nurse said, quote “I have never had a patient pay more than $5 copay for Humira”. I was like “Come again? My insurance told me I’d have to pay the deductible and then Humira would help me out. My deductible is nearly $3000.” GI nurse shook her head “STOP making calls and let ME handle it. Trust me.”

I f*ckin’ hugged her.

The Prednisone is helping. I’m still having symptoms, but going to the bathroom much less frequently and there’s less blood. I feel stronger. I told my nurse “It brought me back to life”. I was gray and withered yesterday, and now I feel more robust.

But it didn’t “shock” me into remission, as I’d hoped it would. And there’s a good chance I won’t achieve remission from Prednisone.

 

I had blood drawn at the office, to check for anemia, WBC’s, and other inflammation markers. I had to have it done twice because the doc didn’t order Quantiferon Gold or Hepatitis B blood tests, which I must have in order to move forward with Humira. No big deal, the phlebotomist was top notch. Then I talked to the GI nurse about Humira and she explained how things will work. The GI doc isn’t entirely sure we’ll use Humira because he thinks the Prednisone will do it. The nurse seemed to think I should get on Humira before I finish tapering off Prednisone, so that I stay in remission (assuming I achieve remission on Prednisone, which remains to be seen).

I don’t know what to think. I would rather not take biologics (Humira) because I’d rather not take them during pregnancy/breastfeeding (assuming I become pregnant, which remains to be seen, and I can’t TTC until this flare is under control). FTR, Humira has shown no ill effects when taken during pregnancy or breastfeeding. It’s considered as safe as any of the other stuff I take. But still. On the other hand, if it would improve the quality of my life (and by extension, my family’s life) then it’s worth a shot.

**I’m typing this from the toilet. My quality of life could most definitely improve.**

It looks like going forward with Humira is my best option. If I don’t achieve remission with Prednisone, it’s a no-brainer. If I do achieve remission with Prednisone, then it is still a good idea to begin Humira before I finish my taper, in order to maintain remission.

The doc wants me to start tapering off Prednisone after only a week (but keep the Uceris). I have my doubts. He also wanted me to cut it in half from 20mg to 10mg and then done in 2 weeks. I asked if I could do a slow taper and step down 5mg at a time–that works better for me. So I’m supposed to taper 20-15-10-5 and done in 4 weeks. He said he wanted to do a quick taper so I “don’t gain too much weight”. I like this doc but he always fat-shames me and I’m kind of incredulous. I’m 5’9″ and a size 12. I weigh a lot (close to 200lbs) but I’m well proportioned and I’m athletic (built like a brick sh*thouse). The doc is thin but all of his staff is out of shape and at least as “curvy” as I am. So are his patients. I have to wonder if he harrasses all of them about their weight? This is not the first time he’s mentioned it. I told him that I am VERY frustrated that I have not been able to consistently work out due to illness/injury/circumstances and that it is a priority. Also I know that Prednisone wastes muscle and encourages fat storage in the midsection, so I need to eat high protein/low carbs while on steroids to stave off weight gain. I can do it.

But not today m*therf*cker. Today we went to the Cheesecake Factory after the doctor and enjoyed ourselves. It was quiet, BG behaved, the food was great–awesome gluten-free options, and Mr. MLACS and I enjoyed sitting across from each other having a conversation in a restaurant in broad daylight.

All-in-all it was a swell day. I was treated very well and received good news at the GI appointment. Mr. MLACS and BG found a wonderful park and played while I had my appointment–they rarely have daddy/daughter dates since he is working so much, and they had a blast. We shared a great meal.

And the contractor came back with the estimate to repair our (burnt to a crisp) dream home–under budget. So we are getting ready to begin repairs and it is supposed to take 6 months. God willing, we will live in this house that we are paying the mortage on.

XOXO,

MLACS

Seeing Red

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Oh man you guys, I wish I had good news. I wish I could say “Crisis averted!”

But no.

I’m weak. I had my period and the bleeding in my colon increased, so I’ve just been bleeding and bleeding for over a week. So much red. I go to the bathroom more than a dozen times per day and every time the toilet bowl is bright red.

I made an appointment to see my GI last week, when I realized the Uceris isn’t working. I was still hoping it would start working. But it’s not. The appointnent is tomorrow. When I talked to my nurse I asked her what she thought the doctor would say about next steps–Humira? Steroid enemas? But (unlike my previous nurse who would discuss my treatment with me) this nurse balked and wouldn’t touch the question–said I’ll have to discuss with the doc. Meh. I had preemptively discussed it with him at my first visit so I’m pretty sure it will be one or both of those things.

In anticipation of this, I called my insurance to see if they cover Humira and Budesonide enemas, what I have to do to get them (prior authorization? appeals?), and how much they will cost me. The Humira is covered, but requires a prior authorization, plus I have to meet my deductible (I believe $2800) plus another $2000 on top of that. However, Humira has a program whereby I shouldn’t need to pay the $2000, but I’m not sure how much I’d actually have to pay. With my previous insurance I did Remicaid and with their assistance program I only paid like $300 per infusion.

I don’t want to shell out $3000+ dollars for this sh*t. I want to take a family vacation. Or pretty much anything besides buy f*cking medicine.

On the other hand, the Budesonide enemas are “only” $90 for a 30 day supply.

I meant to take BG to the Little Gym today, but I couldn’t. Finally around mid-morning I had a particularly painful round on the toilet with debilitating cramps. A wave of panic washed over me and I felt dizzy. I knew I needed help, so I called Mr. MLACS and he came home from work. I apologized, I felt guilty. But he said not to worry and he played with BG all morning and into the afternoon. Before Mr. MLACS came home BG was clingy and climbing all over me as I lay on the couch, refusing to go play with all her toys just steps away. But she relaxed and played very well after Mr. MLACS came home.

I called my GI nurse and told her what was up–I haven’t had a solid bowel movement in days and I’m basically pee’ing blood out of my bottom. I told her I’ve had my period and that has made it worse–I’m weak. She surprised me by telling me to go to the emergency room, because I need labs to see if I’m anemic and possibly need a blood transfusion. It hadn’t ocurred to me that I might be *that* sick. I balked and asked her where else I might do the labs because I don’t feel sick enough to warrant the ER (if you can ever avoid going to the ER, avoid it–it’s always full of weirdos, criminals and drama queens, plus germs, plus it takes for-ev-er, they can’t do much besides treat the symptoms, and it costs a lot unless you have medicaid/medicare). F*ck that. The nurse said she wants the labs stat and most places (including their office) don’t do stat. But I offered to go to labcorp (still a PIA but waaaay better than the ER) and she said she’d check with the doc to see what he says. I also told her that I can’t go on like this and I know Humira will take awhile to get approved–I have a bottle of Prednisone (I have a bottle of pretty much everything) and I can pop 60mg and try to shut it down (meaning, stomp on my overactive immune system). She said she’s get back to me.

I tried to nap with BG but that little turkey wasn’t into napping today. She lay quietly for a bit and looked at a book, but eventually we both gave up and joined Mr. MLACS in the living room. Meanwhile, the GI nurse called and relayed that the doc wants me to take 20mg of Prednisone (in addition to Uceris) and they will draw labs at the office tomorrow. Fine by me.

I bet they will also draw a Quantiferon Gold to check that I don’t have Tuberculosis. That came up in conversation the other day with the nurse. She was telling me “Well before you can consider Humira you have to take a TB test and yadda yadda…” I told her I can’t pass a TB test–I fail them every.single.time–and my allergic reaction is so bad that I refuse to be subjected to one ever again. The Quantiferon Gold is a blood test that is actually more accurate than the TB skin test. One particularly nutty GI doctor even insisted I have a chest x-ray in addition to the blood test, and upon passing he STILL insisted I should be treated as though I have active TB. I fired that m*therf*cker. All my other GI’s agree he was being ridiculous (including Dr. Targan at Cedars Sinai). Nowadays the first thing I do when I meet a new GI is show him my negative Quantiferon Gold and ask him if he agrees that I do not have TB.

I took my 20mg of Prednisone and surprisingly I passed out with BG for 2 hours while Mr. MLACS went and did the grocery shopping. I feel better, but usually I feel wired like a crackhead on Prednisone. I am shocked that I am still laying on the couch, exhausted.

I am really f*cking sick.

XOXO,

MLACS

Wait And See

So I didn’t hear back from my Gastroenterolgy office on Wednesday. I woke up Thursday and was in a fair amount of pain (hemorrhoids, backache, vaginal tear) and having frequent bloody diarrhea.

I was absolutely determined to right myself, as I had committed to take BG to a playdate at the zoo with a new mom’s group. It was a beautiful day, I really want to meet more moms, and we have season passes to the zoo–I was determined to go. So I popped a Hycosamine (anti-spasmodic, which reduces the ‘sudden urge’ to run to the restroom) and a Vicodin (for pain–I am only prescribed 40 pills per year and I am quite sparing with them, but needed it today–I do not feel impaired when I take them and they actually make me a bit hyper). And although I hadn’t heard back from my GI’s office, I took a Uceris pill because I need to take it in the morning and I really couldn’t go another day without it.

I got myself and BG together and we made it to the zoo right on time to meet up with the group. I felt pretty good–almost “normal”. BG and myself thoroughly enjoyed ourselves. There was an awkward moment when my GI nurse called and wanted to know what my symptoms were–I told her I wasn’t comfortable discussing that at the moment but that they were “the usual” and I had left a detailed message. She understood and agreed that I should take the Uceris and that I do not need to come in for an office visit–yet. If my symptoms haven’t resolved in 2 weeks then I’ll have to be seen. Fair enough.

Both myself and BG were exhausted by the time we finished our zoo playdate. I buckled her in snd then checked my phone, realizing I had missed a call from my OBGYN office, regarding being seen for my vaginal tear. I called them back and they informed me I had an appointment in an hour! There was no way in hell I could make it, so I rescheduled for the next day (Friday). The Uceris was definitely working because I stopped having to run to the bathroom for the rest of the day.

Friday I woke up feeling better, but still uncomfortable. I had to rush to the restroom a few times, but at least there was no blood! Yay! Mr. MLACS came home in the afternoon to watch BG so I could go to the OBGYN and see about my vaginal tear. My appointment was with a Nurse Practitioner, not Dr. Soul.

I have never had a female OBGYN that I’ve liked or trusted. And this Nurse Practitioner was no exception. She was brusque and cold. She said my vaginal tear is right down the middle (I thought it was askew, but it’s hard to evaluate your own vagina). She said it looked like it might be infected.

Then she swabbed me…one of THE worst experiences of my life…it felt like she was rubbing fire ant venom on my vag! It BURNED like nothing I’ve ever felt before. I think she enjoyed hurting me–she certainly didn’t apologize (sadistic). She told me the culture won’t be back for a week or so, but assuming it’s infected, she wants me to take antibiotics and use a cream. I can’t go to spinning class or really do any sort of vigorous physical activity until it is completely healed–this SUCKS–I am gunning to get in shape and have been really great about my workouts lately! And obviously I can’t have sex–no TTC–in fact my period is due next week and I presume I can’t use tampons. Ick. I asked the NP what I should do to prevent tearing during sex (because I tear every time, just not usually this bad) and she said to use lube–coconut oil is best–and stretch the vaginal opening. I’m so annoyed because I don’t like sex to be some big production. And FTR, I use lube, but it’s KY and the NP said it has alcohol in it and is drying, so no good.

She asked if I was allergic to sulfa drugs and I told her no, but that most recently I’ve had success with using Doxycycline. To which she replied that it will ruin a breastfeeding child’s teeth (stains them). She is now the 2nd doctor to inform me of this. I have been on Doxycycline for weeks at a time (per my prior dermatologist and also Dr. Angel). Greeeeeat. So I may have ruined my child’s teeth. Awesome. Yay.

I left to go check out and the MA comes running after me to tell me–get THIS–they *used the wrong swab* and if I want it to go to my preferred lab (the one my insurance is contracted to) then I’d need to have the swab done AGAIN. She saw the HORRIFIED look on my face and quickly added “or we can have it processed here in our lab, which your insurance will still cover but maybe not all of it”. I stood there, mouth agape, but finally said “I am NEVER doing that swab again, go ahead and use the one you have”. What. The. F*ck.

I stopped by target afterwards and took my time since BG wasn’t with me. Grabbed a starbucks and just meandered (well, and I grocery shopped). That was a nice way to decompress. I picked up some liquid coconut oil, an act of optimism, that I will heal and have (non-painful) sex.

I picked up Bactrim (my antibiotic) and a cream from the pharmacy. Used them last night and I’m happy to report that my vaginal tear feels better. But my stomach is upset from the antibiotic and I had explosive bloody diarrhea again this morning, so….

F*ck it. Just have to wait and see if any of this sh*t (Uceris, Bactrim, cream, etc.) actually works.

XOXO,

MLACS

It’s Not Fair

Yes, friends, life is not fair. We know this. And my problems are first-world problems. But still…

I’m sick and tired of being sick and tired–and in pain.

I have a mouth full of mouth ulcers. Under my tongue. On the inside of my bottom lip. I even get them on my gums. They burn every time I eat something–anything. To keep them at bay and to improve my gum health, I have been using the water flosser with a solution of 1/2 water and 1/2 hydrogen peroxide, every night. My new dentist suggested that, and it has helped. And I rinse with Chlorhexidine gluconate solution. I want to get my gums healthy enough to do invisalign braces (had braces as a tween, teeth are crooked again). But I’m not sure I’ll ever be able to achieve the level of oral health necessary to move forward with invisalign.

Then there is the Rosacea. It’s a constant battle and I’m losing. My face is red and blotchy and I have some acne. I don’t want to use oral meds, ever, because my liver has enough to process already. But the topical stuff isn’t really working these days. I don’t like how it looks but I rarely bother with make up. Sometimes I wonder what people think when they look at me. I don’t look at myself much. I used to be vain.

Then there’s the more serious stuff–my colon is bleeding. My abdomen is swollen and tender. I’m going to the bathroom frequently throughout the day and every time it’s explosive bloody diarrhea. It smells like something died. And I’m sitting on the toilet straining, my hemorrhoids bulging inder the pressure, while my toddler and my dog get in my face–toddler opening all the drawers and playing with her bath toys, while I am practically incapacitated on the toilet. And when each “episode” is over, I go to lay down on the couch. I am depressed/angry/exhausted. And then BG wants to climb on me, or jump on the couch, and all I want is a moment of peace and for my hemorrhoids to stop throbbing. A lot of times I snap at her. All she wants to do is play with me, and in those moments all I want to do is be left alone to soothe myself. Every time I see blood in the toilet it upsets me–it’s an undeniable sign that I am sick.

I’m sick and I have to admit that I’m sick.

I HATE taking big-gun meds and I’ll deal with these symptoms for weeks in hopes of them resolving. But I’m so tired and it hurts and “resting more” is not an option. Mr. MLACS has been working 7 days a week, 14+ hour days (I see him 2 hours per day) and I have a toddler 24/7. So I waved the white flag and left a message for my GI nurse this afternoon, asking to begin Uceris (steroid specifically for UC). Haven’t heard back yet. If they insist on an office visit (so pointless) then that’s a 2hr commute each way. I have seen them 2x in 6 months so I hope they don’t insist I be seen. I wish they would just bill my f*ing insurance without wasting my time and *limited* energy.

There’s more…

I had sex 10 days ago and I tore, and it still burns when I pee. It’s not healing. This might be a symptom of my Lichen Sclerosus or maybe my hormones are still whacky from breastfeeding (maybe I need estrogen cream). It’s frustrating to only rarely feel up to sex. Because I’m sick. Because every time we have it I tear and am in pain for days, wincing when I pee. This time it’s been 10 days so I took a mirror and looked–there is a pea-sized HOLE next to my vagina. A huge, gaping tear. No wonder it hurt as bad as it did after giving birth. I might need stitches. I have to call Dr. Soul’s office in the morning and see about getting in today or tomorrow. It’s a f*cking 50 minute commute each way, but I definitely need to be seen.

People don’t know what my life is like. I got up today and went to spin class. I took BG to the Little Gym for her class. I made lunch. I layed down with BG for nap but didn’t sleep. I went to Walmart. I made dinner. I gave BG her bath. I took a shower. I am able to do all these things, and I AM grateful. But being ill is a burden and it makes everything So. Much. Harder. I struggle to have a “normal” day like this. I cried when I saw the hole in my vagina.

You see, I’ve been saying to Mr. MLACS for days that either I am pregnant, or I am dying. The animals and BG have been super clingy. The dog follows me room-to-room (he never does that). I’ve had vivid, strange dreams. Backaches. Cramping. Some yellow cervical mucus. Feeling dizzy. More hungry than usual. WAY more emotional. And we weren’t even TTC this cycle, if it did happen then it was a long shot, but I haven’t felt like this since I was pregnant/doing fertility treatments.

But I cried tonight after I saw that hole in my vagina. All my “pregnancy” symptoms are just symptoms of my health issues. I’m NOT pregnant and I shouldn’t want to be, given all the issues I have right now. I don’t want to take Uceris (or worse) while pregnant. But yet, I’m sad. And I feel stupid for symptom-spotting (that is some rookie sh*t).

What the f*ck is wrong with me?!

This sh*t is not fair.

XOXO,

MLACS

**I don’t need anyone to tell me they are sorry–I didn’t write this for sympathy. I wrote it because I need to tell my story. Maybe it will help someone else. I hope something good can come from me sharing.