…Unless you have it…
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:
- 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.
- 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?
- 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.
- 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.
- 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.
To recap my last post:
- I had the Stelara infusion a week ago and it is working–no blood in my stools and I feel better all-around.
- 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?
Y’all know I just spent all kinds of money getting my hair done. And now it is f*ing falling out.
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.
I have recently discovered Claudia’s blog about her life with Crohn’s disease–she is SO witty and SO blatantly honest and if you know me (as some of you do) then you know I like her style. So I’m re-blogging her latest blog. As for me, I’m just sitting here waiting for someone to call me back for my Stelara infusion…
On Fridays, during lent, I would make my family linguine with clams. For those of you who are not Italian, it’s a big dish in the Italian culture. Both my girls loved it. The 2011 Easter and lenten season would be a memorable one…for the whole family. While my kids were feasting on their linguine, […]
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- So my current IBD meds are: 35mg Prednisone + Humira 40mg/weekly injection + 50mg 6MP.
- 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.
- 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.
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.