Being Transparent About Chronic Illness

I’m in need of a new hairstylist since we moved to the South and I went for a consultation with one today. I told her that one of my considerations is that I’m chronically ill. For me, the way that affects my choices about hairstyle are:

  1. I have limited energy and often do not style my hair.
  2.  I’m on a medication (prednisone) that has changed the shape of my face from oval with defined cheek bones to round and puffy. I’m self conscious about that and need a style to compliment my current face shape.
  3.  This medication (prednisone) causes me to have night sweats, so I wake up soaked with my hair matted to my head–one more reason not to bother styling it.
  4. I need to be able to wear my hair in a ponytail due to reasons 1 & 3. When I first got sick I had just had my hair cut and it was too short for a ponytail and it was a nightmare. So I want a cut that is stylish but it can’t be too short.

I had to take BG with me to the salon so the stylist knows I’m also a mom and I told her that I need something low maintinence because I don’t have the time or money for anything high maintinence, though I wish I did (I used to…). I asked if she can do evenings or weekends so that my husband is available to watch BG, as hair is expensive and a babysitter for several hours on top of it is more than I’m willing to spend on myself at this time (especially because of all my f*ing medical bills).

The stylist was awesome–so easy to talk to, knowledgeable, and passionate about her work. I loved her suggestions, but they are beyond my budget–I said $150-$175 is my comfort zone. I guess I am really out-of-touch with reality because stylist said most of her clients will spend about $250-$275 per visit (I assume this is before gratuity and not including purchasing the recommended hair products). Stylist said many of her clients don’t need to return to the salon for 6-9 months provided they use the right products to maintain their color, and with that in-mind I can see the rationale of spending $300 a pop–$600 per year–on services. Mr. MLACS probably spends close to $30 every month for a haircut + gratuity, so about $360 per year, and that’s for the most basic services. So is $600 per year on hair too much for me to spend on premium services? I know some women who color their own hair at home. I know others that spend $1200 every few months for extensions. So I’m not sure what the “average” woman invests in her hair. In any case, I felt sheepish about it but I asked Stylist to work within my budget, so maybe not her trademark balayage, but some blonde highlights that hide my gray hair and a cut that is stylish but functional. Stylist said she had better ideas and would give me $250 for $175 to get me “hooked” (ha ha) because she has a vision and it is ombré. I said I certainly don’t want to take advantage of her and please only do what she is comfortable with. But she waved me off. So I have an appointment scheduled. I hope she’s not just offering the extra services because I told her I’m sick–I never intend to play “the sick card” and would be mortified if that’s what happened here.

I also went to the dentist today. I have gingivitis that is aggravated by my autoimmune digestive issues and the medications I take that dry out my mouth. I was also having constant mouth ulcers that were deep and incredibly painful. My previous dentist just kept telling me to floss, and since my gums were perpetually sore and inflamed and bled easily, and my mouth always full of ulcers, it wasn’t something I wanted to do.

I established care with new dentist in November and his treatment plan has changed my life! He gave me an iodine mouthwash that really helped clear up the mouth ulcers. Then he told me to start rinsing my mouth with hydrogen peroxide every day. His dental assistant went one step further and suggested I use half water + half peroxide in my water flosser. The dentist also told me to floss with dental floss, uhg. I followed directions except that I used my water flosser 2x per day and still didn’t use dental floss. After a month I was amazed when I looked and saw all my gum inflammation was gone! I wasn’t bleeding anymore when I brushed! I hadn’t had a mouth ulcer since starting the treatment!

Then I got sick. I actually had to cancel a cleaning scheduled for February and straight-up told them I was very ill and would call to reschedule when I was well enough *to drive* myself to the appointment. They were like “Uh, sorry you’re sick…call us whenev”. It was awkward but I really couldn’t be bothered to come up with a chipper lie on that day.

But no matter how sh*tty I have felt, I have kept up with my dental treatment plan. And today I got to experience the fruits of my labor–a pain-free teeth cleaning with ZERO bleeding! Omg! I cannot even explain how proud and happy I am. And grateful to this dentist. At my first visit I had asked him about doing clear correct braces (cheaper version of invisalign) and he said I couldn’t even consider it until my gums were healed. And I asked him in all seriousness if he thought that was even possible, since they had been in bad shape for years. He said yes of course if I followed the treatment plan. So I asked today if I am a candidate for braces and he said yes! But then my bubble was burst when I was told it would cost $6500 up-front. I also asked about porcelain veneers but when the dentist said $17,000-18,000 with plans to replace them every 20 years, I nearly choked. Sheesh. I remember my Mom making payments to my orthodontist, but nowadays dentists/orthodontists exclusively accept cash or credit up front. And they encourage you to apply for “care credit” but let me just be honest and say that my credit score is sh*t and I’ve been previously denied, so I didn’t bother applying today. FYI, I am working on my credit but it’s a slow process because *defaulted student loans*. I’m embarrassed about that but lots of people in my generation got f*cked by taking out too many student loans. And of course I have a few old medical bills in collections because *chronic illness*. So I will not be getting clear correct braces anytime soon, and that bums me out. I guess if it was that important to me then I would find a way to earn the $6500. But I have no ideas how to do that as a SAHM because I refuse to do any P2P marketing (no plexus/rodan + fields/lularoe/lipsense/etc.) and I don’t know what I could make to sell on etsy and those “work from home” things are all scams and clearly I am not in a position to go to work (at least not for “fun money” but if my family needed me to I would).

I know it’s ironic that I’m sitting here worrying about my appearance when I have a rotting colon. I definitely struggle to feel like I’ve “earned” the right to spend money on myself and my appearance when I’ve been laying on the couch and usurping my family’s time and money with my medical appointments and bills. I’m just trying to feel like my old self–trying to feel “normal”, look “normal”, act “normal”. But also coming to terms with the fact that chronic illness is part of who I am now, and I’m tired of glossing over it. There has to be a balance, right?

XOXO,

MLACS

Chronically Cray-Cray

I feel like I am losing my mind.

It’s the drugs. I have been doing better this past week–less blood, more stool, less urgency, less cramps (didn’t even take any Bentyl). So I decided I needed to try dropping my Prednisone from 40ng to 35mg yesterday.

Big mistake. HUGE.

I took my 35mg of Prednisone circa 3am Monday morning and went back to sleep, then woke up feeling tired (like chronically ill fatigued not ordinary tired), anxious and disoriented. It’s hard to explain but maybe a good analogy is I felt like an autistic kid with SPD in the middle of chucky cheese. I was freaked the f*ck out.

So what this tells me is, I was in withdrawal from that tiny 5mg Prednisone drop–this is typical. And it’s awful. But it has to be done.

I warned Mr. MLACS that I was “short on spoons” (click HERE to read about the ‘spoon theory’) and basically in survival mode. My goals were simply to:

  1. Take BG to her *very first* dentist appointment at 10am
  2. Not yell at BG for doing obnoxious toddler things that spike my anxiety and wear me out

I also wanted to sweep the incredibly dirty floors (have not even begun to catch up since my hospital stay 3-ish weeks ago) and do some laundry…maybe fold it (ha! who am I kidding? It lives in a heap on top of the dryer) and make something for dinner. Mr. MLACS told me to take it easy and just do what I can. Love that guy.

So I tried to get BG to watch cartoons or play independently while I tried to calm myself down and get my bearings. But she is a toddler and doesn’t understand when mommy needs space and quiet. I snapped at her quite a bit. I just needed to be left the f*ck alone. I just needed to stop sweating and feeling waves of panic wash over me. I just needed to escape. But there was no escape.

And BG wanted my attention. So I did my best. I talked to her about going to the dentist. I think we may have read some books or played something. And in between interacting with her I would ask her to be patient and “give me a minute”. But what I really meant was give me 10 minutes and toddlers don’t have that kind of patience so BG would start jumping on the couch or spilling water everywhere and I would start to lose my sh*t. This was our morning.

Then we had BG’s dentist appointment at 10am. It was hell trying to get us both ready, as I was physically dragging and when I have anxiety I am basically stuck to the couch, too overwhelmed to self actualize. If BG hadn’t been so goddamned annoying I probably wouldn’t have been able to pry myself off the couch, so we have her to thank for any and all productivity yesterday.

BG did very well at the dentist! So did I. To my relief we were the only ones there and the office was cool and quiet, which helped me to stay calm. There was a train running on a track along the perimeter of the room near the ceiling. BG is super into trains so she says “Alllllll abooooooard! Choo choo!” when she sees it. But when it exited to the next room and was out of sight she would whine and moan–that was like nails on a chalkboard. I very dryly told her the train will be back but she wouldn’t quit whining until it entered the room. Uhg. And I was trying to fill out her paperwork so her distracting me–when I’m anxious and have “brain fog”–makes this much harder than it would normally be. But I mean, what is “normal” for me anymore? I don’t even f*cking know.

Anyways.

So the dentist was a very gentle and soft spoken man. He had me hold BG facing me and then lean her back so her head was on his knees and he quickly and gently examined her mouth. Says her teeth look great but she has some plaque and we need to brush thoroughly along her gum line. I’m embarrassed to say that we let BG brush her own teeth and I had a feeling this was insufficient but she is happy to do it and I didn’t want to hold her down to get the job done. But I suppose we’ll have to because I also don’t want her to have a mouth full of cavities at 5 years old like I did.

BG did cry during her exam but the lovely dental assistant handed her a bag of “goodies” when she sat up and that calmed her right down. I was so proud of her because she said “thank you” to everyone and told everyone goodbye as we were leaving. I was drained but offered to take BG to the park. Instead of running and climbing she mostly played pretend–handing me handfuls of mulch to “eat”–and picked up rocks. She’s super into rocks. I’ve had to start limiting the amount of rocks she can take and keep. There were other moms with kids and I spoke to them but certainly wasn’t in the frame of mind to make friends. One of those instances where being a “chronic mom” is isolating. Luckily BG was disinterested in the kids and we stuck to ourselves, “eating” mulch and hoarding rocks under the playground equipment like a couple of trolls. It was just what I needed.

I fed BG snack at the park and we set off for home to make lunch and take a nap. I actually pulled together a good lunch for us and I felt good about accomplishing the dentist, park, and lunch. Then we cuddled up and took a 2 hour nap together. I felt a bit better when we woke up but still fatigued. I put on cartoons and decided to sweep up the floors. You should have seen the massive ball of pet hair that materialized. I’m disgusted. And I just cannot keep up with the house cleaning and neither can Mr. MLACS. I *refuse* to let our dream house get filthy like this once we move in (in August if it goes according to plan). So we will have to budget for a house cleaner to come at least bi-weekly. I feel so bad about that but I just can’t do it myself, at least not consistently–I don’t have enough spoons and I want to use my spoons for other things, like cooking and taking BG to the park.

I asked Mr. MLACS to pick up some things from the grocery store on his way home and threw dinner together–marinaded some chicken breasts in olive oil/lemon juice/lemon zest/salt/pepper and had Mr. MLACS grill them, then we assembled salads. BG does not eat salad. Also the dentist confirmed she is cutting her 2 year molars–that sh*t hurts. So I let her eat an entire container of cut up strawberries for dinner. And a popsicle.

By this time I had calmed down (it only took ALL day). Mr. MLACS was great and totally took BG off my hands so I could chill, and it really helped.

I was exhausted when we went to bed but couldn’t get to sleep until almost 1am. Then was awake from 5am to 6am to toilet and wait for my Prednisone to kick in. I tried 35mg again today but in addition to feeling like sh*t and mentally unstable, I began to have increase in pain and blood. So I gave up and popped that 5mg of Prednisone around 8am. And it helped. But this is bad bad bad that I cannot even drop 5mg at this high of a dose. My GI is probably going to say the Humira isn’t working and tell me to try a different biologic. And I don’t wanna.

XOXO,

MLACS

 

 

My Life As A Mom (with chronic illness)

I woke up this morning at 3:35am to the sound of BG softly crying “Mommy mommy mommy” and reaching out for me in a sleepy haze–we are still cosleeping and I was perpendicular to her 2ft away on the bed, and I reached out involuntarily and pulled her to me. She’s got a cold and is not feeling very well. Unfortunately my bowels woke up as well, and I have to ditch BG and urgently run to the restroom. Of course BG starts wailing since I’ve abandoned her and I’m sitting on the toilet frustrated as f*ck that:

  1. My kid is in distress and continues to cry no matter how many times I repeat “Mommy is just on the potty and I’ll be right back!”
  2.  I’m awake at 3:35am
  3. I’m stuck on the toilet until the cramps subside and then I’ll have to take my 40mg of prednisone before I climb back into bed to soothe BG

I finish toileting and hastily toss back my prednisone, hurry back to bed and scoop up BG and hold her and rock back and forth coo’ing “It’s ok, mama’s here baby” as she snifffles and buries her head in my shoulder. I then decide we should change her diaper and give her a dose of tylenol, so I have to leave her again to go grab a new diaper from the nursery and tylenol from the kitchen. Again she wails “Mommy mommy mommy” as I stumble around in the dark trying to get it together. I hear Mr. MLACS blissfully snoring in the guest room and am annoyed because:

  1. He gets to sleep through this while I am stressing
  2. He obviously is not wearing his CPAP mask like he’s supposed to

I return to BG and get her diaper changed and give her a dose of tylenol and a drink of water. Then I pull her close to me and nurse her on the “business boob” (my left side) as the right side is “closed for business” and no longer in use. BG tucks into me and within a few minutes she has drifted back to sleep–it’s almost 4:30am. I look at the internet on my phone for a few but I’m exhausted so I set it down and we sleep in until 8:26am! That never happens! BG has been up by 6am every day this week (yawn). But of course when Mr. MLACS is home she sleeps in. Naturally.

Mr. MLACS slept in too and greets us in the living room. I turn on cartoons and situate BG on the couch. Then I turn my attention to the leftover chicken wings from last night–I have been waiting to eat them for breakfast. Since Mr. MLACS is home I let him give BG her Stoneyfield organic strawberry beet yogurt and apple spinach squeezy pack for breakfast, while I stuffed wing stop original recipe mild sauce wings with blue cheese dip in my face like a true carnivore.

I sit at the table and in order to see BG and Mr. MLACS I had to move aside this gorgeous arrangement of farmgirl flowers that arrived yesterday wrapped in burlap and brown paper–a mother’s day gift from BG courtesy of Mr. MLACS. Some of my favorite flowers are included–pink peonies, lavender calla lillies, and purple tulips amongst exotic greens. It’s perfect. Mr. MLACS put very little thought into my birthday or our anniversary and I was disappointed, so the farmgirl flowers for mother’s day were his attempt at redeeming himself. Well done, Mr. MLACS, well done.

Mr. MLACS has turned on the movie “Zootopia” at BG’s request–the main character is a rabbit so BG will say “Bunny! Hop! Hop!” when she wants to watch it. Which is ALL the time. But it’s very entertaining because BG is in love with a song on the soundtrack called “Try Everything”, by Shakira. And in fact, she gets excited every time is comes on because she LOVES to dance! And the cutest thing–she actually has choreographed a dance with Mr. MLACS, complete with lifts and dips and a deep bow at the end. So as I’m stuffing my face with chicken wings, I am treated to a performance by Mr. MLACS and BG. I clap wildly and tell them they are wonderful dancers! My heart could literally burst every time I see BG dance with her daddy.

I have a 10am appointment at Labcorp to have my blood drawn to check serum levels of Humira prior to my injection today. Labcorp is a solid 40 minute drive from where we live. So I hastily wipe up my saucy-dippy mess and rush off to brush my teeth and change my clothes. I look in the bathroom mirror–yep–my face is still fat due to the prednisone. Aaaaand my hair is horribly frizzy. I wet down my hair and try to brush it into a ponytail without a bunch of little hairs sticking out–I wish I had some hairspray but I never ever remember to buy any at the store. Uhg.

Then of course I have to use the toilet and that tacks on 10 minutes to my already tight schedule. IBD is such a PIA (see what I did there?).

I transfer my keys and wallet from the diaper bag to my purse. Then go to kiss BG goodbye–she says “I sad mommy, I sad”, which is new and I have Daniel Tiger to thank for teaching BG about emotions. Maybe I am not such a horrible parent for letting her watch hours of PBS cartoons every day? I tell her “Don’t be sad! You and Daddy are going to play and have fun! Mommy is just going to the store and I’ll be back”. I kiss and hug her and she kisses me and says “Bye Mommy!” And I’m off.

I get to Labcorp and it’s actually not even crowded–a rarity. Sign in. Pay them money I owe. Decline to pay them the “estimated patient responsibility” because f*ck that–they can send me a bill. Am immediately taken back and have a warm conversation with the phlebotomist. Then off I go.

I called Mr. MLACS to see what they were up to and they were getting ready to go “do things”. I said I thought I’d grab a coconut milk chai tea latte from starbucks and then head to Trader Joes for a few things–namely fruit and gluten-free bagels. I was practically giddy about my little “mom-venture” even though it was really tame by any standards. To shake things up, I decided to go to a starbucks I had never been to before.

I know, I am SO wild and crazy.

But to further shake things up, I tuned my SIRIUS radio to a hip-hop station and cranked it loud enough that the people next to me at the stop lights could hear the beats. Yeah. I am a muthafuckin’ gangsta. Rollin’ hard with my car full of reuseable shopping bags, extra diapers, toys, and floor littered with annie’s cheddar bunnies and empty squeezy packs. Like a boss.

So I get to the “foreign” starbucks and am excited to see that it is right next to this faaaaabulous new grocery store I have been wanting to check out. I grab my coconut chai tea latte–a venti instead of a grande–because it’s muthafuckin’ muthas day yo.

Then park and walk into the grocery store… it’s AWESOME! Everything is new and it’s huge and first thing I see is cut up cantaloupe for $1.99 per package–what a deal! I meander around and see a container of strawberries for $1.97! Of course they aren’t organic but at that price I am willing to ingest a little GMO fruit laced with insecticide. Grab a few more things and go to check out–happy to see that *for once* I qualify to use the express lane because I have exactly 10 items. I am a bit jealous of the guy behind me because all he has is alcohol and I would LOVE to drink a large glass of  moscato with some of these GMO strawberries floating in it, but alas, I would be a fool to drink when:

  1. I’m actively flaring–alcohol is inflammatory. Nope.
  2. I’m taking Humira (which says “no alcohol”) and like… 10 other medications… so my liver is already working way to hard.

Giving up coffee and occassional alcohol sucks. F*ck IBD for that.

My check out girl is really pretty–hair fixed, make-up on, nails done–so I lean over and tell her she looks really pretty today. She lights up and flashes me a million dollar smile.

I put my groceries in the car and take a couple sips of my coconut milk chai tea latte. Then call Mr. MLACS, who is out and about with BG “doing things”. I tell him I had forgone the Trader Joes GF bagels and shopped at the faaaaabulous new grocery store instead. And now heading home. He says he’ll see me there, as BG is about ready for a nap.

Now here is my favorite part of the day: I turned on the radio and it was a mix of Nas’s album “Nastradamus”. Which is hip hop at it’s finest. I turned it way up and reminisced about my days as an exotic dancer–I used to love to dance to hip hop. I used to actually cross paths with all sorts of players, pimps, gangsters, club owners, promoters, etc. etc. on a nightly basis. They knew who I was (or at least they knew my stage name). I used to get off work at 4am or 6am and go to breakfast with the girls or to the grocery store when nobody else was there–just me. I had an exciting life, full of drama and intrigue. While I nodded my head to the rhythm and flow of Nas, I let those memories wash over me. I used to be such a badass.

But I was also very lonely.

I didn’t belong in that kind of life. I didn’t do drugs. I rarely drank. And towards the end of my exotic dancing “career” I yearned for a husband, a home, an SUV, and a baby. I just wanted to be “normal”.

Then I met Mr. MLACS in the club I was working at and that was it. I knew I was going to marry him when he said “You don’t belong here”.

But now that I’ve fulfilled my dream of being a suburban stay-at-home-mom, I realize “I don’t belong here” either. I have had a crazy life–one of the clubs I worked at in Hawaii was a front for New Zealand mafia. Those nights I danced at Spearmint Rhino in Vegas and met the real-life version of Tony Soprano. I could go on–I lived that double life for 10 years (me by day, stage name by night). Also, I’m chronically ill and that–moreso than my “double life”–makes me feel isolated from other people. At least exotic dancing is interesting. Telling people about your chronic illness never goes over well. Both of these things are huge parts of who I am, but I hide them.

People who see me now see a suburban mom driving and SUV through the starbucks drive thru on her way to the supermarket. They don’t see who I was before. They don’t see who I truly am now–my struggle with chronic illness.

I turned down the hip hop music as I entered my suburban neighborhood. When I turned down my street I saw Mr. MLACS and BG getting out of his truck and I rolled down the window and greeted BG–she lit up when she saw me and jumped up and down. I parked and she came running up to me with a gift bag, excitedly shoving it at me. She is really into “surprises” lately and we “surprise” Mr. MLACS with something every time we go to the store–things like chocolate milk or deodorant–and when he gets home I hand it to her and she goes running up to him saying “Daddy! Daddy! PRIZE! PRIZE!” So when I saw her bag for me I whispered “Is this a ‘prize for ME?!” And she clapped her hands to her cheeks and whispered back “Prize Mommy!”

She is so precious. So, so unbelieveably precious.

And in that moment life was beautiful and perfect and my heart was so full it felt like it would burst.

I am a Mom.

XOXO,

MLACS

 

 

 

 

A New Diagnosis

Just going to get to the point: I saw the IBD Specialist on Monday and she said that I have *Crohn’s Disease* not *Ulcerative Colitis* due to my fistula. That was not what I wanted to hear. Crohn’s is worse than UC. Crohn’s cannot be eradicated by surgery. Crohn’s is *forever*.

Luckily IBD Specialist had an opening for a colonoscopy at 11am the next day so I took it. I had to do a bowel prep and they gave me Golytely. It was THE worst bowel prep ever–an entire f*ing gallon of foul tasting liquid. Even mixing it with apple juice couldn’t make it civilized. I had stomach cramps, bloating, and severe dehydration. So for future reference–do NOT take Golytely–insist on something (anything) else.

I felt so bad (weak, muscle cramps, sore hemorrhoids and rectum, no sleep) by the time I was done with the prep that I had Mr. MLACS grab me a wheelchair to get from the parking garage to the office. Of course BG was with us too, and Mr. MLACS had planned to take her to the childrens museum while I had my procedure. Unfortunately, it was required that Mr. MLACS remain in the facility during the procedure so he and BG just ran the halls. God bless Mr. MLACS–he has had a tough couple of days worrying about me and keeping up with BG.

What the colonoscopy revealed:

  1. I have severe left-sided colitis. The photos look like chopped liver.
  2. The rest of my GI tract is pristine
  3. Official diagnosis: Crohn’s Colitis *or* Crohn’s Granulomatous Colitis

So IBD Specialist wants me to restart my Rowasa (mesalamine) enemas, and if I find I cannot retain them then she will switch me to cortifoam.

IBD Specialist is confident that she can get me into remission with drug therapy and did not even hint at surgery, so there was no discussion of surgery and no meeting with a colorectal surgeon.

I liked the IBD Specialist and her team, and I am relieved to finally be able to relax because I have a highly motivated and highly competent medical team. I only wish that I could keep them, but unfortunately they are the “House” (if you are familiar with that tv show) of IBD and they only take on problem cases and then once they fix you they send you back to your regular GI.

XOXO,

MLACS

ER Part II: Admitted

So to continue my ER waiting room story…

Mr. MLACS and BG dropped me off at the ER circa 6pm. Mr. MLACS asked me to check the tires because our SUV indicated low air pressure. I half-assed kicked the tires and didn’t see anything wrong. Well, Mr. MLACS did his due dilligence and took the truck to a gas station to check the air pressure. Lo and behold, one of the rear tires was missing 20 lbs of air! Clearly there was a leak. So he took BG to a tire shop down the street to have it repaired. Luckily we didn’t need new tires, just a patch job. More importantly, thank God Mr. MLACS was driving when this happened because I often ignore the truck’s “warnings”–most of the time they are false alarms. It could have been a dangerous situation.

I had packed a bunch of snacks for BG (organic squeeze packs, organic cheddar bunnies, organic string cheese stick) so she happily sat and ate her snacks and watched the guys working on cars through a picture window in the waiting room. The truck was finished by 8pm and Mr. MLACS took BG to Raising Canes for a late dinner of chicken strips (not the healthiest but we only eat out 1 or sometimes 2 meals per week so not a big deal).

By 9pm they were done but I was still waiting in the ER…

Now I was feeling anxious because I had not intended to be here more than 4 hours total–awfully naive for someone who has visited ER’s at least half a dozen times.

BG fell asleep in the car but apparently wet through her diaper and woke up. Mr. MLACS got her changed into her spare outfit and placed a blanket in her carseat as a barrier to the urine-soaked seat cover. BG was upset and Mr. MLACS sat next to her in the back seat while she watched cartoons.

Around 10:45pm I called Mr. MLACS and upon hearing the weary tone of Mr. MLACS’s voice and that BG was still awake, I was ready to give up and go home–but I wanted my lab results. So I decided to stand in line at the admissions desk to tell them I need to leave and ask for a copy of my lab results. I stood there for a few minutes, and then…

A nurse came out and called my name! It was FINALLY my turn! Ironically, just as I had decided to give up.

The first thing I did was ask for socks (hospitals always have socks and you get to keep them–they are non-skid and awesome) and a warm blanket because it was freezing in there. I changed into my gown but kept pants on. Went over my symptoms and medications with my nurse. Then a PA came in and informed me that I am anemic, but not “terribly” anemic–my hemoglobin level was 10 (I think “normal” is 12). But it was disturbing because my hemoglobin was 14 just three months ago–falling 4 points is a lot.

The PA left and after awhile a young MD and her “shadow” came in and talked to me and gave me a “digital rectal examination”. While the MD was there, the nurse came back and gave me zofran, bentyl, and morphine. The MD asked me what my anemia symptoms were and I listed them, and she said it would be a good idea for me to have a blood transfusion–usually your hemoglobin has to be below 7 for a blood transfusion, but I had fallen four points and had a lot of symptoms. If I agreed then I would have to be admitted to the hospital to have the transfusion. I said I would do anything to feel better and stronger.

I talked to Mr. MLACS and he said to go for it. I asked the nurse what she thought and she said do it.

By this time it was after midnight and I just wanted to either leave with my family or send them home to go to bed. The PA came back and was skeptical about me being admitted for a blood transfusion because my hemoglobin levels aren’t that low. She said the “hospital team” would have to evaluate me to see what they wanted to do. Uhg.

**somewhere in here I was wheeled away to have x-rays of my chest and abdomen.

I told Mr. MLACS to just go home because I was pretty sure I was being admitted. I begged him to be SO careful because of all the drunk drivers (I could feel his eyeroll through the phone but I had to say it because *anxiety*). I asked him to keep his phone close just in case.

I started to fall asleep and a new MD–a hospital internist–came in and talked to me. I told him the deal: been bleeding for 4 months, got better on Humira + prednisone but then worse when I dropped my prednisone too low, now current GI won’t do anything without 2nd opinions so I’m stuck like this until somebody/anybody helps me. He said “absolutely not” to the blood transfusion and also got an attitude when I asked about IV iron (which is preferred over oral iron for IBD patients)–Internist said it’s too expensive and I’m not anemic enough to warrant it. *rant* This offends me and pisses me off because he is “treating the numbers not the patient”. My symptoms and history show that I am in distress. Whatever it was 3am and I just wanted to be admitted so I could go to sleep. Internist said he wanted to put me on high dose IV steroids. I balked and said sure but only if I won’t have to wean again. He said I shouldn’t need to wean much if at all. So suddenly I was getting admitted for IV steroids instead of a blood transfusion. I had seen an ER MD, a PA, and an Internist MD and every one of them told me something different and confused the hell out of me. But I was proud of myself for keeping my wits about me even with their nonsense and my exhaustion and the morphine.

So I was finally wheeled up to a room and I vaguely remember texting Mr. MLACS my room number before I fell asleep. That was Friday. When I agreed to be admitted for a blood transfusion I was given the impression that I would be released the next day (Saturday).

The nurses woke me up several times to take vital signs/draw blood/give medications but I was exhausted so I barely opened my eyes and kept falling back asleep. Then there was a parade of doctors: Colorectal Surgeon, Internist MD, and Gastroenterologists. The Gastroenterologists were from the same group as the local GI that I *fired* because his nurse didn’t return my calls when I was serious crisis. I only saw that GI one time but these other GI’s kept mentioning his name as though I was still his patient. It was awkward for me to have to correct them–I said “things didn’t work out” with me and the local GI and that it was really his nurse’s fault and I know he is a good doctor. Whatever. They didn’t seem very interested. I was actually shocked when they told me I needed to stay in the hospital for the weekend *at least* and get pumped with IV steroids. That was so NOT what I signed up for! I want to wean off of the steroids! I wanted a blood infusion to quickly fix the anemia and give me some energy and sustain me until one of my GI’s “fixes” me. I wanted to go home to Mr. MLACS and BG. But one of the GI’s turned to me and said “I think you don’t realize how sick you are”, and I thought… she’s right but so what? I was worse off 2 months ago and never got admitted, so why now? I called Mr. MLACS in tears, apologizing over and over for allowing myself to be admitted because if I had only known they would pump me with steroids and keep me all weekend then I wouldn’t have agreed to it. I was SO frustrated. He told me not to worry and that BG was asking for me and they would be there soon to visit.

Mr. MLACS came to visit me Saturday, Sunday, and Monday. Of course Mr. MLACS had to take off work to care for BG and I felt guilty about that because he has a big project this week. But he pretended it was no big deal, which was sweet of him. When they would visit we would walk downstairs and grab snacks and walk around. BG was like a little goodwill ambassador and said “Hi!” to everyone that crossed her path–people would smile and tell us how adorable she is. Then we would hang out in my room and I would cuddle BG and we watched cartoons until she became restless and it was time to go. It was hard to watch them leave, but I won’t lie–it was good for me to just lay in bed and sleep for three days straight. On Sunday the GI agreed that I could be released the next day.

But on Monday the Internist MD came and told me that my hemoglobin had fallen to 8.9 and he offered that I could have an IV iron infusion and I jumped at the opportunity. He said I should be done and out the door by 10am. But no. It was almost 3pm before I was released. We tried to go and eat but BG had missed her nap and was obnoxious so we ended up getting our food to-go.

Today I have been fielding calls from ALL my doctors because they were all notified that I was in the hospital. My biggest problem right now is that I planned a trip to my hometown and planned to see my Midwest GI on May 1st. But then my current GI referred me to a *superstar* IBD specialist in his city and they also offered me May 1st. So now I have to choose. And much to my chagrin, I think I will have to cancel my trip home to the Midwest because I just dont think it’s wise to travel alone with BG for a week in my current state. It’s a 10 hour drive and then we’d stay in a hotel for a week. It’s 3pm now and I’m already anxious for Mr. MLACS to come home and take over with BG because I just want to lay here and not move. I’m still passing blood and going to the toilet 5-10x per day, I’m tired, and my rectum hurts. So… I guess the only reasonable option is to cancel the trip home. And I’ll be seeing the Southern IBD specialist on May 1st.

I hope she can “fix” me.

XOXO,

MLACS

Waiting In The ER: Real Stories

I’ve been waiting to be seen for 4.5 hours, alone because I refuse to subject my family to the germs and all the crazy ass people.

Story #1

I find it odd that entire extended families parade into the ER when only one of them is ill and not even *that* ill because they are sitting there talking to all the aunts/uncles/cousins. Some of them even brought pillows and blankets. I do not understand this “borg” mentality, clearly, as I chose to be alone. Even if Mr. MLACS was here we’d just be looking at our phones because we are not the “loud family reunion in the ER” types.

Story #2

I find it odd and inappropriate that people bring kids to the ER when they don’t need to be there. I saw 5 little girls skipping down the hall in front of 4 adults–surely *one* of the adults coukd have kept the girls? ERs are not places for kids. Also, I saw a birthday party of pre-teen girls–like 8 of them–carrying gifts for someone. And then there are a bunch of teenagers…

Story #3

Speaking of teenagers, there was a band leader and a baton twirler girl dressed in their band uniforms, sequins and all! There are also several members of a track team. And some honky-tonk trouble makers who think it’s funny their friend hurt his hand.

Story #4

There was a mama here with her husband, toddler, and infant. She was here before me. And I felt so bad for her and her family having to wait. They were clearly stressed out and uncomfortable. Finally I heard the baby crying and saw the mama’s head in her hands and went and quietly asked if she needed anything, because my husband and daughter were close by and could drop something off. Poor thing was toast and said no thank you and they left shortly after. I wish she had been seen. I would have given her my spot if that was an option.

Story #5

So Mr. MLACS is parked in the parking with BG, who is watching cartoons in her carseat with a very full belly and fighting sleep. He tells me there are a bunch of people drinking in the ER parking lot. Seriously?! I’m not surprised but it’s so lame.

Story #6

There are some suuuuuper sick looking older people scattered around the waiting room slumped over in wheelchairs. They look like they are ready to die. Kind of creepy.

Then there’s me. Lookin all Johnny Cash “man in black” in head to toe black sweats and a ball cap. Glad I wore the ball cap because it is easier to avoid eye contact with weirdos. I was feeling like crap and then I spiked a 100° fever and I needed to have blood drawn anyways, so decided to hop on over to the ER round dinner time, thinking it wont be crowded because its early. And it wasnt too crowded. But my rookie ass forgot that they take people based on priority. So even though I was here early, at least 6 ambulances have pulled up with messy traumas and then there’s all the people who look like they are dying. And the junkies faking chest pains to jump the line. I am SO screwed. But I already had blood drawn and I do NOT want to have to go to labcorp tomorrow and spend 2 hours waiting there after I “did my time” here. And Mr. MLACS keeps telling me to stay.

But it sucks. I’m sore and achey. I havent eaten sh*t in the last couple days and I brought apple juice but I’ve run out. I am having colon “attacks” and the pain is real and I sit here squirming around, clenching my butt and my jaw, lest they call me while I run to the toilet. I did go twice though and told the front desk my name just in case. Not that they paid any attention. I hate “exploding” in shared public restrooms but I had no choice. I hate that BG and Mr. MLACS are in the parking lot with a bunch of low-lifes. I worry that we’ll be hit by a drunk driver on our way home and it will be all my fault for this useless trip to the ER. But I am grateful to be better off than some of these poor sick folks.

XOXO,

MLACS

 

Decisions Decisions…

Saw the local colorectal surgeon on Tuesday (the one I saw about my hemorrhoids back in February) and saw current GI on Wednesday. Both appointments went better than expected.

Colorectal surgeon asked me questions, including “Are you sure you have a fistula?” and “Are you sure you have Ulcerative Colitis and not Crohn’s?” The answer to both questions is emphatically–YES–but with hesitation about the UC vs. Crohn’s diagnosis because I need a colonoscopy and biopsies to confirm a diagnosis. So far all tests (and my 13 year disease history) point to UC. But people with UC only rarely develop fistulas–that’s a characteristic of Crohn’s–so I see why all my docs are skeptical.

The Surgeon had me drop my pants and lay face down on her table. She commenced poking and prodding and the *highlight* was when she performed a “digital rectal examination” (finger in the butt).

But the good news is my fistula is superficial (only in the skin) and Surgeon only needs to “lance it and lay it open” (fistulotomy) and it will heal. This is great news, because many fistulas require more complex surgery, sometimes multiple surgeries, and can take months or even years to heal. I got super lucky to have an uncomplicated fistula, and I’m grateful to have caught a break on this one. I’m scheduled to have the procedure under anesthesia on May 10th. I could have it done outpatient but that’s not how I roll–prefer to be KO’d and blissfully unaware for procedures.

Saw current GI on Wednesday. To my surprise he actually suggested that I have a second opinion and told me he’s like to refer me to an IBD specialist in his city. I thanked him and said I’d be happy to follow his recommendation. I then asked if he’d mind if I saw my old GI in the midwest while I’m back home in May, and current GI was all for it! What a relief!!! I thought I would have to be the one to bring up getting a second opinion and I was dreading it.

I was so flabberghasted by the way the conversation went that I neglected to press current GI about my medication options to help me wean off the prednisone. But I honestly don’t think he wants to discuss it until after I get a second opinion. So for now I’m stuck at 25mg prednisone. Hating it (prednisone) because I have “moonface” and look chubby even though I’ve lost weight. Had hoped to be back to my old self soon. I really have to let go of my expectations.

Current GI examined me and again (2 days in a row) I received a “digital rectal examination”. He was going to stick a scope in my anus but I requested he not do that and he obliged.

So I need a colonoscopy and current GI said he *can* do it but indicated that one of the second opinion docs would be a better choice. I was surprised he said that. Initially I thought to have the procedure done by my midwestern GI when I see him during my trip home. But talked to his nurse and he is booked that week. Which is actually better because I’ll need someone to take me/pick me up and look after BG because I’ll have to be under anesthesia.

I decided to see if the local Surgeon can “supersize” my order and add a colonoscopy onto my fistulotomy, since I’ll already be under anesthesia and this way Mr. MLACS would only have to take one day off work. I called today and spoke with Surgeon’s nurse, who informed me that Surgeon prefers not to combine the procedures, but she will ask Surgeon and get back to me. Fingers crossed that Surgeon agrees to do both procedures on May 10th.

As for me, my symptoms are still the same, haven’t worsened or improved. Urgency, tenesmus, toilet bowl red with blood, passing very little stool, 5-6x per day. I’m fatigued but still managing quite well. However, I think I need to be checked for anemia. Been bruising easily and today felt winded walking through CVS. I really do not feel like messaging current GI to ask for lab orders and kick myself for not requesting them yesterday, although to my credit, I did inform the MA of my concerns when she was taking vitals and information–so GI ought to have mentioned it.

I started exercising again–tried my first pilates class using the reformers and LOVED it! It’s the perfect activity for me right now and I thought it was fun! The teacher is lovely and I did so well that she asked if I should consider becoming certified to teach. This made me feel good and also has inspired me to find my way back to the fitness industry. I love helping people reach their fitness goals (coaching) and I want to do something outside the home. I’m not prepared to seek certification or teach just yet, but I will start looking into it and find an opportunity when the time is right. Oh! I bet most of you don’t know that I was a fitness competitor and personal trainer for years. Love it but my UC started flaring in 2011 and I never fully recovered–it’s been a rocky few years–and sometimes I don’t see the inside of a gym for weeks or months. So I just do what I can, when I can. And I hardly feel qualified to motivate other people when I’m not in shape. Hopefully that will change soon via meds or surgery, because I miss my super active lifestyle. I’m a “jock” at heart.

We dyed Easter eggs with BG tonight and she was a riot! Threw the biggest fit until we were done coloring the eggs and then greedily shoved them in her Easter basket and clutched them to her chest. Then commenced playing with them–Mr. MLACS was a gorgeous blue “daddy” egg, BG was a radiant pink “baby” egg, and me… I was a cracked yellow “mommy” egg. Mr. MLACS teased me because his “daddy” egg was shining bright like a diamond and my “mommy” egg was plain and beat up. None of these eggs will last until Easter but c’est la vie–just hope BG doesn’t hide them where we can’t find them!

For Easter I bought BG a bunch of trinkets, like a slinky, silly putty, bubbles, stickers, etc. But no candy because refined sugar turns her from a mogwai into a gremlin–seriously, she loses her mind. Plus her idea of a treat is organic fruit snacks and chocolate graham crackers, so why ruin a good thing by showering her with candy?!

Hope you all have a lovely Easter weekend. We will be spending it just the three of us ❤

XOXO,

MLACS