Just Waiting…

Hey peeps! Last we spoke, I was headed to see the IBD specialist’s Nurse Practitioner. Well that happened a week and a half ago, and I figure I should update you on my colon.

  1. I am starting Stelara ASAP. But (there is always a “but”) the infusion center scheduled me *way* far out on July 12th and that is not acceptable, so together with my IBD MA (medical assistant) we are working to figure out WTF is up with that.
  2. I haven’t spoken of it in awhile, but I still have a perianal fistula. Looking forward to getting that resolved one way or another in the near-ish future, I hope–fistulas are tricky, fickle things.
  3. I managed to drop my Prednisone from 40mg/day to now 35mg/day. I accomplished this by dropping 2.5mg instead of 5mg. I plan to stay at 35mg until after my first Stelara infusion, unless for some reason I am compelled to drop to 32.5mg–but my symptoms have increased a bit so I doubt I will attempt that.
  4. The 6MP does appear to be working. My toileting is down to 2-3x per day, mostly formed (albeit oddly), with only a little blood and mucus. I do still have “urgency’ when I need to poop, but I can’t complain–I am SO much better than I was a couple months ago. Amen.
  5. Plan is still to try Stelara and then have the surgery (ileostomy) if the Stelara doesn’t work. I feel so close to remission right now–as if I’m hobbling toward an imaginary “finish line” in a nightmare-ish marathon. It will really crush me if I have come this far but can’t reach remission. Like come the f*ck on.
  6. So my current IBD meds are: 35mg Prednisone + Humira 40mg/weekly injection + 50mg 6MP.
  7. I am also still breastfeeding BG at naptime and bedtime. She is healthy as a horse and has only had a few minor headcolds in 27 months (no croup, never had to suction her nose). I really feel the breastmilk is what boosts her immune system, and since my immune system is so f*cked up I am elated that BG’s is functioning so well and will continue to breastfeed her for awhile. So at least my body is doing something right.
  8. People have been asking me if I’m going to have another kid. My answer is I want to, but I have to get better first. What I don’t bother mentioning is that even when I do “start trying” I hardly expect things to be easy or timely, because that is not my lot in life. But I really, really hope it works out.

XOXO,

MLACS

June 16th

It was three years ago on June 16th that I conceived my BG upon my 6th IUI (intrauterine insemination). It was a “hail mary” attempt, as I had not planned to have an IUI that cycle. According to my RE, I had cysts on my ovaries and likely wouldn’t ovulate anyway (due to massive amounts of fertility drugs–I’m talking 400iu of Gonal-F, which is an IVF dose). But I decided to go see my OBGYN, Dr. Angel, and have him take a look mid-cycle to see what I was dealing with. And what we saw was one perfect follicle (no cysts) getting ready to ovulate.

And this fire was LIT inside me, that I had to try this month after all. I didn’t think it would work–truly I didn’t–but I could not stand the thought of not trying.

Of course Mr. MLACS was 3,000 miles away working. So I did the only sensible thing–I told him to ditch work and bring his ass home to impregnate me. I was 110% serious. He offered to fly me to him but that would have cost like $2,000 and I said I would rather put that money toward IVF (because again, I did not think this was going to work). We argued. We fought. We both cried.

I had another option, but I didn’t want to consider it. I had a vile of frozen sperm “on file” at the RE’s office. But he. (the RE) was such a f*cking pompous prick to us after our 5th IUI, that I did not ever want to set foot in his office again. However, my desire to “try” this cycle trumped my desire to punch the RE in his face. So without monitoring, I simply waited until I got a “smiley face” on the CBD ovulation predictor–this happened on a Sunday. And first thing Monday morning I called the RE’s office and “ordered” my husband’s thawed sperm as one might order a mcmuffin at mcdonald’s. The receptionist balked but offered to check with the RE (who was on vacation). And luckily, I was given the “green light” to come in for an IUI at 11am. I was glad the RE wasn’t there and his nurse unceremoniously inseminated me. I didn’t even lay there or put my legs up like I normally would–the moment she left the room I pulled my pants on and got the hell outta there.

During the TWW (two week wait between ovulation and menstruation) I ate what I wanted, exercised vigorously and drank a lot of wine at a wedding–things I wouldn’t normally do after an IUI. This is NOT to say that it worked because I “just stopped trying”–that is bullsh*t and don’t ever suggest that to a couple who is struggling to get pregnant. But it is to demonstrate how little faith I had that I was pregnant. I was sure I wasn’t–every other month I swore I was pregnant but this time I didn’t bother. I was busy researching IVF clinics.

But I actually was pregnant–finally–a year after my 2nd miscarriage and so many infertility drugs and needles and vaginal ultrasounds and fights with Mr. MLACS and worry and TEARS…so many tears…

So June 16th is one of the best days of my life, because that is (without a doubt) the day I conceived my BG.

XOXO,

MLACS

California L❤ve (plus an update)

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So we had an absolutely WONDERFUL time in California! Steph and I are old college buddies (HPU Sea Warrior alumni) and we stayed with Steph’s family (see Steph’s blog HERE and follow her on instagram @stephmignon) and Steph fed us and entertained us and her house is beautiful but it also felt like home and not a museum and our kids adored each other and it was such a treat to see her and spend time with her family in the intimacy of her home. Like, it just couldn’t have been more perfect. Steph–you are my favorite ❤!

And get this! I got to meet Jo from My Hope Jar (click HERE to check her out)! I was privileged to meet her family and she got to meet mine and truly we did not have enough time together but it was lovely and really comfortable because it’s like we already know each other from the blogs. I didn’t feel nervous about making an impression because Jo *knows* how cray I am and still made time to meet up with me. Love you Jo!

Both of these ladies are beautiful and kind and real class acts. I’m very proud to call them my friends.

Disneyland far exceeded our expectations–BG absolutely lost her sh*t over Minnie Mouse at “Mickey’s Surf’s Up! Character Breakfast”. It was a buffet and there was plenty of gluten-free stuff I could eat–scrambled eggs, sausage, bacon, and breakfast potatoes. But then you can also special-order gluten free pancakes, so *of course* I had to try them and they were marvelous! I did feel a little twinge of disappointment that they were “regular” pancakes while the buffet had waffles in the shape of a Mickey mouse head, but I am 37 years old and need to get over it. FYI, all the food was delicious. BG hugged and kissed and danced with Minnie and Mickey and my heart swelled so big I thought I might actually die of the preciousness. She lit up every time Minnie visited her and she cried and reached out for Minnie every time Minnie left our table. I was stunned by her fangirl reaction. And the thought occurred to me that she might love Minnie mouse more than me–that’s how gaga BG was over her. We wheeled her away from breakfast in her stroller with the promise that we would see Minnie again, but it was her (Minnie’s) naptime. BG was seriously pouting and really could’ve used a nap herself.

It was overcast and kind of cool outside, which was *ideal* weather for us because I can’t handle the sun and Mr. MLACS doesn’t prefer the heat. The weather was like this the entire trip and everyone kept apologizing that we weren’t getting the “beach weather” we had expected but honest-to-God I was very content with the cool weather and gray skies. The South is hot and humid these days and I can hardly stand it.

Let me just condense the Disney trip and say that we walked around and we rode the carousel and BG played at Goofy’s playhouse but we didn’t bother to stand in line to ride any rides–BG does not have the patience and she was already overwhelmed and overstimulated. We took her to build-a-bear and made a stuffed Minnie mouse that cost like $60 and of course BG gives no f*cks about stuffed Minnie and is instead obsessed with a Minnie mouse ink pen, a mini pink cell phone, and a couple other junky little overpriced trinkets.

BG fell asleep in her stroller for a bit and Mr. MLACS and I celebrated our awesomeness as parents for the “home run” at Disneyland and it was actually very romantic–I now see why people do Disney as a couple. We left on cloud nine, albeit exhausted.

Another thing I love about California–Disneyland included–is that there are a lot of Starbucks. I had a lot of coconut milk chai tea lattes while on vacation. And Steph made some strong starbucks coffee every morning and even though I knew better I still had some. Because vacation.

I also ate stuff I shouldn’t have eaten and that was no bueno. I now realize I “glutened” myself at least 2x by eating mochi from whole foods–I thought mochi was just rice flour but then looked at the ingredients on a box of mochi at Trader Joe’s yesterday and it very clearly said “wheat flour”, which would explain the horrible gas and bloating. I can’t believe I was so irresponsible! Stupid stupid stupid. I felt bad blowing up Steph’s guest bathroom, but she pretended not to notice (thanks Steph).

My colon was reasonably well behaved while on vacation but by the end of the week I was feeling pretty rough from all the food and activity (and apparently, gluten). I was hurting by the time I left. And SO BLOATED. OMG. I am still up 6lbs from when we left and I think 3lbs of it is in my *face*–I have “moon face” from the prednisone so bad that I almost don’t recognize myself. It’s awful. But I still took plenty of photos and just tried to get angles that made my face look less pudgy–not an easy task.

And this makes me feel desperate to get off the prednisone–I’m having way more side effects since adding the 6MP a couple weeks ago. I feel polluted. And I got some blood test results from IBD Specialist while in Cali and they weren’t good. My Humira trough level is still at *2* and needs to be at least a *5* to make any real impact. It’s not going to happen.

I have officially *failed* Humira.

That is utterly disappointing and I’m freaked out because I said I’ll try Stelara and then if it fails I’m done with drug therapy and having surgery.

It feels surreal. Like how did I even get here? 6 months ago surgery was the furthest thing from my mind.

I have to make the 4hr round trip to the city to see IBD Specialist’s Nurse Practitioner this Friday. I have to take BG too, which is SO convenient when I’m trying to talk to a doctor (sarcasm). Although, I took her with me to the dermatologist on Monday and she was good as gold–but their office is great–big, clean, no waiting, lots of tv’s.

So guys this is it. I’m going to try Stelara and if it doesn’t work I’m about 90% sure I’ll have a permanent illeostomy before the end of the year.

Glad I took my colon to Disneyland when I had the chance because I’m pretty sure it’s about to RIP.

XOXO,

MLACS

 

 

 

 

 

 

 

 

 

 

 

 

California Girl

I’m going to Disneyland!

Hey guys, I’m currently packing and getting ready to go to California to see my good friend and fellow blogger Steph Mignon (click HERE to check her out–she’s fabulous) and while there me and Mr. MLACS have planned a day trip to take BG to Disneyland. I’m finally getting excited! Took awhile, what with all the literal sh*t hitting the fan around here–I dared not hope that this vacation would actually happen. But here we are, 2 days from departure and my health is stable, I feel pretty decent and I appear to have my sh*t together-ish. I might even skip taking my valium for the plane ride (anxiety post-9/11) because I dealt with my fear through EFT tapping and I don’t feel freaked out like I normally would. I forsee us having a great time with our friends and making precious memories with BG.

Oh! And I get my hair done tomorrow–fingers crossed that it makes me feel like a “California Girl”. Got some cute dresses to wear on vacation too (couple new, couple I just never wear because I live in sweats and leggings).

But I don’t get to leave chronic illness at home. It comes with.

I had to buy a lock for my suitcase to make sure my kid and Steph’s kids cannot get into my vast array of pills. I had to buy a cooling bag to carry my Humira injection pen. I have a bikini for the beach but I have to wear a rash guard over it because I am so sensitive to the sun (I feel flu-like when I get too much) and now I’m also prone to skin cancer due to the drugs I’m on. And I always have to wear a hat.

Fingers crossed that my health stays stable and that I don’t catch any horrible viruses due to being on 3 different immunosuppressants. The IBD Specialist had me get a flu shot and a pneumonia vaccine (Prevnar 13) so at least if I do catch the plague I might be spared.

But hey, I’m going to Disneyland! Yay!

XOXO,

MLACS