My Potterybarn Life

So of course the house won’t be finished on schedule. My gut instinct (and plenty of experience dealing with contractors) told me as much. They said it will be a “couple more weeks” and we can deal with that–but no more than that.

Meanwhile, I have been entertaining myself by shopping both online and in stores. It’s been quite a thrill! Mr. MLACS and I agreed on a budget and he has given me carte blanche to do as I please. I’m happy to say that I have been able to buy a lot of my first choice high-end items (potterybarn, restoration hardware, crate and barrel, west elm, williams sonoma, etc.) and then some lovely modestly-priced items as well (target, wayfair, hayneedle, home goods, etc.) and even some custom pieces from etsy and local artists.

But the “pièce de résistance” is my PB comfort slipcovered custom sectional sofa in “everyday linen”. I have always dreamed of having a potterybarn slipcovered sofa and I ordered exactly what I wanted–even upgraded to the feather down filling.

I also bought a PB leather recliner that I adore because it is very stylish, but it’s really for Mr. MLACS–mostly as a decoy so he doesn’t sit his greasy a** on my PB couch when he gets home from work or comes in from playing outside with BG and the dog. Mr. MLACS has been wanting a recliner for ages, so it’s win/win for both of us.

I see my facebook newsfeed full of fiery indignance about politics/politicians/social injustice/other very important things that I should be more aware of. And I wonder if I’ve truly become a shallow person, because I give no f*cks about any of it. None. I watch cartoons all day and sing songs and play playdoh and buy groceries and sweep up gobs of pet hair and cook dinner. But do you know what really inspires me??? What really matters to me???

My muthaf*ckin’ potterybarn sofa sectional. That’s what.

Sorry to disappoint you if you thought I was better than that. I’m not.

I have literally spent hours agonizing over which throw pillows to accessorize my couch with. HOURS. Who does that???

Me. I do that.

All the pinterest’ing and online shopping has been great because it keeps me off social media (I love/hate social media–mostly hate) and gives me something to look forward to. I feel giddy every time the doorbell chimes and I see the UPS/FedEx/USPS carrier making haste toward their vehicle, because I know that means there is a special delivery for moi! BG gets excited too and loves to open the boxes with me and reveal the “prize” (BG’s short for “surprise”) inside. It never gets old for either one of us.

I could sit here and wax poetic about all the faaaaaaabulous things I’ve recently acquired (the boxes of which are cluttering my foyer and the UPS guy has to wonder WTF is going on because I can barely open the door).

But let me also enlighten you about the current state of my colon.

I will see the IBD Specialist this Thursday (so 3 days from now). I need to discuss some things with her:

  1. I’ve still got this perianal fistula. Lately it itches a bit–is that good or bad? It doesn’t hurt though. And I’m still slightly incontinent (anal leakage). So I’d like to see one of their Colorectal surgeons and get their opinion. Also, I want to know if they will do a laser fistulotomy. And if they are capable of doing a colectomy laproscopically. Sh*t I should probably already have asked, but did not have the presence of mind to even consider until recently.
  2. The Stelara is working, but I worry. I just hit the 3 week mark post-infusion and I’ve read the half-life of Stelara is 3 weeks. I woke up today with a bit of blood and mucus. Is it wearing off already? Or is this a blip on the radar? My concern about it “wearing off” is legit IMO because I “failed” Humira due to my serum levels never accumulating to theraputic levels–because as IBD Specialist phrased it, my body “clears it too quickly”. So, like, maybe it’s clearing the Stelara too quickly? They have me scheduled to take my Stelara injection 8 weeks from the initial infusion, but they could move the Stelara up to every 4 weeks. My question is: what has to happen for them to give me Stelara every 4 weeks?
  3. I’m very determined to wean from the prednisone, and I’m down to 27.5 mg, but I was supposed to drop to 25 mg today and decided against it due to the blood and mucus. Frustrating.
  4. As my prednisone goes down my weight goes up. Isn’t it ironic? Prednisone was like dexatrim for me at higher doses. I lost almost 30 lbs. And now I’ve gained like 25 of it back. I feel much stronger physically and much sharper mentally, so I’m grateful for that and I would WAY rather be chubby than sick. But, it’s still disappointing to have a fat face from prednisone and now a giggly tummy to match. This is definitely something I have some control over and I need to go back to recording my food on myfitnesspal and making better choices. However, it’s harder to make good choices when I’m tired and sore due to prednisone withdrawal–the fact is that I crave sugar. I should probably see an endocrinologist regarding my hypothyroid and adrenal fatigue.
  5. I still want to start TTC soon and I need to know the IBD Specialist’s criteria for when it’s in the realm of possibility. I don’t intend to wait until everything is peachy and perfect, because that likely will never happen. I just want to safely muddle through a pregnancy before having my colon surgically removed–this doesn’t require me to be in full remission, as half-assed remission will suffice.

Ok that’s all for now because BG is peeved that I have not been catering to her this morning and I’m afraid she’s going to complain to HR. Gotta go.

XOXO,

MLACS

 

 

 

Daring To Dream

To recap my last post:

  1. I had the Stelara infusion a week ago and it is working–no blood in my stools and I feel better all-around.
  2. I’ve gained 10 lbs and lost a lot of hair since I started taking 6MP (mercaptopurine) a few weeks ago.

Well, I spoke to the IBD Specialist’s Nurse Practitioner via email (patient portal–so convenient) and she told me to go ahead and quit the 6MP. So I have not taken it the last 2 days and so far, so good–no blood.

Speaking of blood though, I am having my first *real* period in 6 months–it’s very heavy but not painful, just uncomfortable. It’s a good thing though, because it means my body has healed enough that it is willing to consider getting pregnant.

I was cleaning the guest bathroom yesterday and stumbled across some brown paper bags of medication, and I knew they were mine not Mr. MLACS’s, but I had to stop and think of what it was…??

And it stung me like a bee–it’s Crinone (progesterone to support a pregnancy). The Crinone I had bought and paid for back in December after I met my new OBGYN and expressed to him my desire to start TTC (trying to conceive) again. Just before all hell broke loose with my UC-turned-Crohn’s. I shelled out $300+ for this stuff, and I wonder if I will ever get to use it.

Mr. MLACS has been very flirty with me lately, and instead of feeling “blah” about it, I have felt more interested. I got a babysitter and we went on our…2nd?…date, just him and me, since BG was born (28 months ago). We went out to eat at a fun Caribbean-style restaurant–I even had half a glass of wine! I had been thinking about having a glass of wine and I finally felt good enough to try it, and I was tipsy but my liver appears to be worse for the wear. We talked about having a second baby, and we are both ready to try (Mr. MLACS is most def ready to resume our sex life).

We are actually in a much better position to TTC *now* than we were before I became ill. Before I became ill, we had no idea how we were going to get our (burnt to a crisp) dream home repaired. Our marriage was strained from the stress of moving to a place where we knew no one, our house burned down as soon as we signed the contract, and Mr. MLACS’s job was grinding him to the bone, leaving me alone with BG and to do ALL the things by myself. We were miserable. And *then* I got sick and that was the “stick that broke the camel’s back”. Things had to change, there was no trudging on the way we had been. I couldn’t. And at first everything got much, much worse. But when you hit rock bottom, the only place to go is up… So things have been steadily improving. Most importantly, our trials have made our marriage stronger. Well that, and I am not afraid of being unable to parent BG through a pregnancy and another baby, because I managed to do it through my illness. Plus, Mr. MLACS really stepped up and now him and BG are very close–she doesn’t need me as much. If you recall, he was away for work most of the first 18 months of her life, so we were all used to me being the primary caregiver, even when Mr. MLACS was home. But when I got sick, he had to take over and that was actually a good thing, because they have a very strong bond now.

So there are silver linings to my illness–we are stronger as a couple and as a family. We have had time to settle our affairs and we are going to move into our new home soon–we are finally out of the stress and the depression/funk we had in the wake of our house burning down. Mr. MLACS’s job has become a much less toxic place and new management is very “pro-family”, so he is home on time a lot more and a lot less stressed.

We are in a good place to have a baby.

I just have to wean off the prednisone before we can try. I’m going to drop from 32.5mg to 30mg tomorrow. I can’t imagine that my weaning will go completely smoothly–I’ll probably have to hold several weeks at various doses, pending my symptoms. But I am daring to dream that the Stelara will quell my immune system and allow me to wean off the prednisone, given patience and time.

Assuming I can straighten myself out, then we’ll *just* have to work on getting pregnant (ha ha ha ha ha–because it was SO easy–it *only* took 6 IUI’s to conceive BG).

I mean, everybody’s gotta have a dream, right?

XOXO,

MLACS

 

Hair Today, Gone Tomorrow…

Y’all know I just spent all kinds of money getting my hair done. And now it is f*ing falling out.

I’m pissed.

My shower walls are covered in hair (as it comes out in clumps when I wash it). My shower drain is clogged. I’m pulling huge hairballs off my brush almost daily. There’s hair all over my clothes, the floors, etc.

I don’t know exactly why this is happening but my best guess would be the 6MP that I started taking a few weeks ago. The same sh*t that facilitated my gaining 10 lbs since I started it. Nasty sh*t. And I’m only on 50mg/day. That’s not even a proper dose for my size. Technically it is not supposed to “work” until you’ve taken it for at least 6 weeks, and it’s not considered very effective as an immunosuppressant at such a low dose. So *technically* since I’m no longer taking Humira and don’t need 6MP to keep antibodies at bay, my IBD Specialist told me I can quit taking it the last time I saw her. But I thought it was helping so she said “If it makes you feel better (as in, mentally better because she doesn’t believe I could have a clinical response sooner than 6 weeks) then you can stay on it until after your Stelara infusion”.

Well, I’ve had the Stelara infusion and it *is* helping. I feel better! I even felt brave enough to drop my prednisone from 35mg to 32.5mg on Monday. So hey, given all the sh*tty side effects and the fact that IBD Specialist thinks the 6MP is *moot* in my treatment, then I should just quit… right?

But I’m scared. I’m afraid that it (6MP) is working to some extent and that quitting will impede my prednisone taper. And I want off the prednisone NOW–I want my *face* back (because “moon face”).

Which brings me back to… Maybe instead of f*cking with all these drugs, I should just have the (permanent ileostomy) surgery already. I know a stoma is forever and it wouldn’t make my life “gravy” but I am pretty f*ing sick of my current set of issues and I might like to trade them in for a new set–you know, for variety.

And also, I would look horrible bald.

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

 

More Drugs or Less Colon?

How many more drug therapies do I want to try? When will I feel “ready” for surgery (to remove my diseased colon)? Which surgery option is best for me (permanent illeostomy, j-pouch, k-pouch)?

These are the questions I have been agonizing over since I received results from my colonoscopy on May 2nd and blood tests from these past couple weeks. I have been anxious to learn what the IBD Specialist would recommend at my follow-up appointment this past Monday May 22nd. I was afraid she would only offer options I didn’t like and then bully me to pick one.

I went to the city for the appointment and left Mr. MLACS and BG back home, which was actually good because I needed the 4 hour round trip drive time to myself.

I was trying to act casual when I saw the MA, like “Hey girl” but my blood pressure gave me away–148/80. It was higher to begin with, like 150/90. I groaned and leveled with her that I had been stressing about the appointment. Filled her in on my progress post-colonoscopy: first few days thought I might die, added Cortifoam enemas and they helped, now I feel as good or better than I did pre-colonoscopy *but* it’s moot because I’m still on 40mg prednisone since I got sick when I tried to drop to 35mg. So basically, nothing has really changed.

Then I sat in the small, stark, window-less room by myself for 20+ minutes freaking out until IBD Specialist knocked and entered.

She wasted no time. Asked me questions. Discussed my test results. Then launched into a flow chart of treatment options, during which I was laser-focused, taking it all in and formulating questions to ask at the conclusion of her presentation. Must say, I love well organized notes and flow charts, so I appreciated her giving me the visual.

My test results:

  1. Colonoscopy showed severe left-sided colitis. However, there was no inflammation outside the colon (good) and all biopsies came back clean. I tested negative for CMV.
  2. I tested NORMAL for TPMT, which means I CAN metabolize 6MP and Imuran, so these ARE treatment options for me! Yayyyyyy!
  3. My Humira serum levels were pitifully low (2) and IBD Specialist said this indicates that the Humira isn’t doing anything for me. However, I tested negative for antibodies (to Humira) so it remains an option, albeit a weak one. Boooooo.

So with this in-mind, IBD Specialist presented me with treatment options:

1. Humira + Imuran

I went into this knowing my first choice would be to add Imuran to my Humira. I know the Humira HAS helped me (even if it doesn’t seem like it clinically)  and I’m used to it–no negative side effects–so I don’t want to gamble on a different biologic. Since my Humira levels were low I asked about increasing my dose from 40mg/week to the max dose of 80mg/week, but IBD Specialist said 80mg has not shown to be any more effective than 40mg so she doesn’t prescribe the 80mg dose. Frustrating, but ok. Moving on. She said I can try adding the Imuran in hopes it will “boost” the Humira and make it more effective. I was SO relieved she gave me this option.

2. Remicade + Imuran

Even though I tried and “failed” Remicade, IBD Specialist suggested I try it again and heavily medicate (benadryl, tylenol, etc.) in hopes of avoiding a reaction. Like, apparently I should try it even if I do have antibodies. But after further discussion about my experience with Remicade, she decided it’s not an option after all. I was not at all interested in trying it again.

3. Stelara + Imuran

Stelara is a newer drug that has had great results for a lot of people–I’ve been reading peoples’ experiences on forums and it looks promising. It may take only a few weeks to reach “theraputic levels” or it may take months. It’s my second choice after Humira. I hesitate to switch though because I fear getting very ill again if I quit Humira, potential side effects of Stelara, and I want to have a baby and Stelara is a newer drug so there’s nothing to say of it’s safe for pregnancy or breastfeeding. But glad it’s an option.

4. Entyvio + Imuran

Entyvio is also a newer biologic and plenty of people who “failed” Remicade and/or Humira have found success with Entyvio. But it is slow to work–definitely slower than Stelara. So it would be my 3rd choice… except…

I’m really leaning more towards surgery.

5. Diverting Illeostomy (I think it is called?) Where they would disconnect my colon and give me an ostomy (poop in a bag), which could allow my colon to rest and heal. I crossed this off immediately, saying that if I am to have surgery then it will be THE surgery to remove the diseased colon.

IBD Specialist perked up and said surgery is a great option for me. However, as a “Crohn’s Colitis” patient I am not elligible for the J-pouch. Which I already knew. But I need a 2nd opinion before I will accept her diagnosis, and rule out the J-pouch as an option. I intend to seek a second opinion from the Cleveland Clinic. I have not shared this with IBD Specialist, because she acted indignant that I questioned her diagnosis in the first place. So that leaves the permanent illeostomy or a “continent ostomy” in the form of a K-pouch (I’m not considering BCIR). The illeostomy would *theoretically* be the simplest surgery (with no pouch to fashion) and much less chance of complications now or down the road. IBD Specialist said that since I have never shown inflammation outside the colon there’s maybe only a 2% chance of disease reappearing after surgery, so I could expect to live *MED FREE* as in no more pills, injections, infusions, enemas, steroids, etc. Buh bye medicine cabinet! Which is what I want–no more disease, no more meds, living life to the fullest. But then you have to deal with caring for an ostomy and learning to live with the bag. How will I wear clothes–what will be comfortable? What about when the bag leaks (everyone does sometimes)? What about the audible noises a stoma makes as it empties into the bag–will I avoid eating to avoid embarrassing noises in public? What if my skin is super inflamed by the adhesives used to attach/seal the bag to me–I do have reactions to adhesives (like from bandaids and the sticky pads they use for an EKG, etc.) so this is a serious concern for me. If I wanted or needed to remove my entire rectum it would require a 2nd surgery (I thought it could all be removed at once but apparently the rectum removal is complex). The resulting wound from rectum removal may take for-ev-er to close and many people are ‘oozing’ for a year post-op. So, it could be cut-and-dry or it could be more involved.

The K-pouch removes the entire colon and creates a resevoir pouch akin to the J-pouch, which holds waste and gives you some time in between needing to empty it. You have a “valve” on the outside and when you need to empty your pouch you use a catheter, insert it into the valve and it drains your pouch. You can wear your regular clothes without concern for concealing a bag underneath. You decide when to empty your pouch–no spontaneous noises drawing attention in the middle of a quiet room. No worries about a bag leaking, or changing your bag, or skin irritation from adhesives/leaks/etc. But since it is more complex it is also more prone to complications, and since K-pouches are relatively rare (only a short list of surgeons even know how to perform the surgery) you may well have issues finding someone local to treat you in the event that something goes wrong. Is it worth trying?

The J-pouch is most peoples’ preference because it removes the entire colon, fashions a resevoir pouch (J-pouch) out of your small intestines and then reconnects the pouch to the anus so that waste exits the “normal” way, albeit one can expect to need to empty their pouch at least several times a day so it’s still not ideal. The J-pouch generally requires at least 2 surgeries, though rarely will be performed all in one surgery–but that is not best practice. Many people require 3 surgeries, and that would be me. First they’d remove my diseased colon and give me a temporary illeostomy for several months. Then the second surgery they would create the J-pouch. Then several months later the final surgery would close the illeostomy and connect everything together. Three surgeries is a lot. Then there’s the chance that there would be lingering disease in my anus and it would either require me to take meds like I do now or have a 4th surgery to remove the J-pouch and go back to an illeostomy (or possibly convert to a K-pouch). Then there is “pouchitis” which some people (a lot) end up having “chronic pouchitis” and this requires them to be on antibiotics and who the hell knows what else to deal with it–not f*cking cool. I worry that I would be one of the “lucky ones” to have endless issues with the J-pouch, and what I really want (after 13 years of this disease) is to have surgery and be DONE with it.

Thinking about all this stuff is enough to make my f*cking head explode. On one hand, I’d rather have control over when to have surgery and where (such as traveling to Cleveland Clinic) and if I wait until I’m so ill that surgery is my only option then I may end up with a mediocre surgeon and far more complications. But on the other hand, I’m scared. I don’t want to regret whichever surgery option I choose (and FTR surgery is inevitable, just a matter of when). I have discussed it with Mr. MLACS but he’s not got much of an opinion except that he supports me having whatever surgery I choose. I wish my Mom was alive. Not because she would tell me what to do, or hold my hand, but because she would make me feel brave and go forward with whatever surgery without fear or regret. And I could count on her to help me and take care of BG afterwards. I can’t dwell on the way I wish things were, but I wish she was here.

So then, what is my plan?

  1. Humira + Imuran…except I tried the Imuran this week and it made me feel AWFUL. So now I’m going to try 6MP. If I can’t tolerate it at all then I will be so f*cked. Pray for me.
  2. Stelara + 6MP…or if I can’t handle 6MP then Stelara alone…maybe…or…
  3. Surgery

My goal is still to get into remission and off prednisone with drug therapy, and then try to have another baby. Or maybe even to try to have a baby with an illeostomy–but I don’t think I’d try it with a K-pouch or J-pouch simply because they would take awhile to heal and I’m about to be 38 years old, etc.

This…this is what I am working with right now. I actually left my appointment on Monday feeling sad, but relieved. The drugs might work, but if they don’t then surgery could be a great option–provided I don’t end up with complications. I mean, even with complications most people say they would do it again, so…

XOXO,

MLACS

 

 

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