Ridiculous

Guys, it’s been a roller coaster. So, bullet points:

  • Mr. MLACS saw the Cardiologist after his “episode” and Cardiologist surprised him by saying he is now a good candidate for the ablasion surgery!
  • Mr. MLACS has lost over 100lbs this year, but still needs to lose 57lbs to get under 40% BMI for his height, so we thought he was disqualified from any procedures until he lost more weight. *side note: the BMI chart is stupid*
  • Mr. MLACS accepted a job up North, so we are moving. He HATES his job here and his old company made him a good offer, and we decided to go for it.
  • After Cardiologist said ablasion surgery was a “go” pending his discussion with his colleague, Mr. MLACS decided he wanted to do it before we move up North. He was SO excited at the prospect!
  • Mr. MLACS became panicked from stress at his current job and the stress of waiting for the *official* job offer. He was having heart palpitations and said it was similar to what was happening prior to his last “episode” (defibrillation). So I packed up my kid in her jammies and my pregnant self and took him to the ER at 8pm on a Wednesday in monsoon rains. They said he’s fine. I asked him to work from home for the next 2 days so he could calm down.
  • Friday we saw Cardiologist again, anticipating scheduling the ablasion…
  • Cardiologist says his colleague reviewed his case and said he’s not a candidate for ablasion surgery. Ever. Due to what happened during his initial cardiac arrest.
  • So the Cardiologist has been pushing Mr. MLACS to lose weight for this ablasion for *a year*, never bothered to consult about it, and then CRUSHES Mr. MLACS by telling him it’s not even an option.
  • Oh and instead, Cardiologist puts him on a new med (Amitriptyline)  with serious potential side effects to help his arrythmias.
  • And *then* Cardiologist says “You really must lose that 57lbs because the way you are going you are going to need something (like an LVAT) before you’re 50. Even though none of your tests show no abnormalities, the fact that you’re being defibrillated every 6 months indicates there is something wrong.”
  • Mr. MLACS starts crying while I sit there numb, in disbelief. And Cardiologist backpedals trying to make it seem not so bad.
  • I try to comfort Mr. MLACS after we leave. But it’s hard because it does not feel like things are going to be ok. Ever.
  • I bottle it up and morbid anxiety-induced visions of the future plague me for the next several days. Visions of my little girls grieving because he dies, because they find him dead or he dies right in front of them, or of him becoming disabled/incapacitated.
  • I throw myself into trying to figure out this move. It’s overwhelming.
  • After I found a house I like, it is revealed that we cannot buy a house because Mr. MLACS’s federal student loans are in default–he didn’t even know and I found out from a mortage broker. I’m livid because I’ve been checking with him periodically and emphasizing that he MUST keep them in good standing or they can and will garnish his wages and it will ruin his credit. He blew me off and also never bothered to check his credit report. I hate being right sometimes.
  • So then he tells me his choices are to pay $1100/mo for 9 months to get the loans out of default/collections (and I assume keep paying $1100/mo) *or* pay $50k in a lump sum.
  • I don’t want to bring my baby home to a rental house in March. I don’t want to move again. I’m f*cking exhausted at the thought of it. I don’t want to “waste” money on rent.
  • I have the money from my inheritance, but my own federal student loans are in default. Why should I pledge my/our nest egg for his mistake? True, he gave me $333/mo for 5 years to pay off $21k private student loans while I was a SAHM…and he was a total dick about it. He yelled at me “Well I paid your loans!” But what he’s asking is not fair or equal. And the fact that he is demanding it when he made me grovel is the definition of irony.
  • I am really sick of him. Sick of worrying about his heart because he ignored my pleas for him to quit smoking and lose weight and now the damage is done. Sick of him acting like I should use my finite inheritance money as income. Sick that he thinks he’s entitled to it for his student loan f*ck up–this hypocrite lectures me any time I spend too much at Target. Sick that I have to move out of my dream house and drive my 7 months pregnant ass and my kids north for 3-4 days *through the snow in January* to live in a rental home, so Mr. MLACS can have a job he likes–but there’s only a 2-3 year contract so if he stays with the company we have to move again. And again. And again. Or settle somewhere without him. I’m sick that even though he’ll be making $2k more per month he tried to tell me I had to pay $1100/mo for his student loans. And this is in addition to A LOT of other stuff I’ve been paying for, like preschool and dance classes and clothes and lawncare and date nights and all my bills–this is from my inheritance money, I don’t work outside the home. I’ve vowed not to use any of the rental income as personal income for awhile (it stays in the business account) because it’s not consistent and I need to invest in repairs b/c some of the houses are in shambles. But all of a sudden he treats me like a bank. My Dad died. My Grandma died. And even though he’s been supporting us for years he is acting broke.
  • I wish I didn’t have this money (well actually I *do* appreciate being financially secure) because Mr. MLACS is greedy about money–it has always been a thing with him. And me getting this inheritance makes him act like Ebineezer Scrooge, whereas we were in a good place before that.. after years of him being a dick about it, berating and degrading me when finances got tight even though it was NEVER because *I* was financially irresponsible.
  • And now he has f*cked up financially BIG time several times this year alone, and he expects me to dismiss it, without him taking full accountabilty, offering sincere apologies, or giving an explanation of how he intends to do better. Nope, he just wants to sweep it under the rug.
  • Oh and then use my inheritance to fix it because I’m over here “freeloading” as a wife and mother.
  • I found a house to rent up North, since we can’t buy, and I had us fill out credit and background checks last night. This morning I get a call from prospective landlord asking to explain *the 2016 eviction*. I’m like “You must be mistaken”. But no, apparently Mr. MLACS cosigned a lease for his mother before he met me…we have been estranged from her since BG was born nearly 4 years ago. She’s a horrible person and Mr. MLACS was the family scapegoat. Well, now we have to get a lawyer to fight *her* eviction on his record. I explained everything to potential landlord and gave proof that we were not living in that state and in fact have an excellent reference ftom the property management company we were *actually* renting from. But it’s a mess.
  • I own several rental properties and I have money, but I can’t buy a f*cking house. Now I can’t even rent one. This is ridiculous.
  • Did I mention BG has been sick for the last several days and I haven’t gotten any sleep and she is needy and whiney and wants to be on me like velcro 24/7? I have no space to think or breathe. I am low on energy. And then today I’m having back spasms and my uterus felt tight.
  • I called Mr. MLACS crying and I found it insulting when he asked what’s wrong…EVERYTHING is wrong and he KNOWS it. He told me to take it easy.
  • I asked Mr. MLACS to help me get the house ready because the listing agent is coming over tomorrow.  He yelled and berated me for every little thing, like that I hadn’t unloaded the dishwasher. He was insufferable. I finally turned around and said “FINE! I’m not selling this house, I’m staying! I don’t even want to move at this point! So do the dishes, don’t do the dishes, I don’t f*cking CARE! YOU go work up north. I’ve dealt with a metric ton of your bullsh*t this week and I’m DONE!” He says “Well you’ll have to explain that to her (BG)”…and I’m thinking…you probably won’t live to see her graduate highschool so she may as well get used to not having you around…but I didn’t say that.
  • Mr. MLACS is a great dad. And he loves me. But he needs so much f*cking therapy. When he gets stressed or feels threatened (or when there’s money involved) he turns into a monumental dickhead. He’s *my* dickhead. But I f*cking hate him when he’s like that. And I hate it when I have to sink to his level to deal with him–there is no progress with taking “the high road”.
  • After declaring that I was done trying to tidy the house because IDGAF if goes on the market, I went and laid down on a heating pad and left him to do (or not do) the chores.
  • He did them.
  • Why’s it always gotta be like this? With all the drama. We are a magnet for drama.

XOXO,

MLACS

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It’s Benign!!!

Hallelujah! Praise the Lord! It was not melanoma, or any variety of skin cancer. It was a blood mole–I had never heard of such a thing and google is a b*tch for never suggesting it could be anything other than melanoma. In fact google took my paranoia to a whole new level by informing me that in men nodular melanoma is usually on the trunk of the body, but in women it’s on the legs! I almost had a brain anneurism.

Here’s how it played out…

I cried off/on all weekend and had visions of what treatment would be like, how my family suffer through the same painful process that *I* endured when my Mom was diagnosed with terminal breast/lung cancer. How awful it would be for BG to have to grow up without a Mom–would she remember me? Would any of the memories be good ones? Would Mr. MLACS die too and would my good friend and fellow blogger Steph Mignon have to raise my kid??? So. Many. Thoughts. I was overwhelmed by all these thoughts and feelings.

I had a hard time getting to sleep and when I woke up Monday morning I wasted no time–I was going to ambush my dermatologist and insist he cut this thing off/biopsy it, and let me know how screwed I was. TODAY. I didn’t even make my coffee (you KNOW it’s serious) I just got in my car, called the dermatology office, and by some miracle they had an appointment with my doctor in 30 minutes, which was precisely my commute time.

I sat on the edge of my seat as I waited, my body buzzing with anxiety. And when the nurse called me back and asked me why I was there, I tearfully told her I’m afraid I have melanoma on the back of my leg. She looked worried and gave me a gown to put on. I was in suspense as the doctor walked in and I quickly moved to show him the black growth on the back of my leg. And he said…it looks like a blood mole but we’ll take it off and biopsy it. A blood mole. He told me to call if I hadn’t heard from them by Thursday.

After rebounding from the fear of cancer and the revelation of a blood mole, I sheepishly asked him if he had time to do my botox. He did. So I left the office with a hole in my leg and a face full of botox–I haven’t had botox since before my wedding in 2012 but my 20 year highschool reunion is coming up, I’m 38 years old and I have the money, so don’t judge me, ok?? Thanks.

Anyways, I called Mr. MLACS to give him the good news, and decompressed on the way home.

But then as Thursday approached and I hadn’t heard from my doctor’s office, my anxiety started to build. What if…

I called early Thursday (yesterday) morning but no one called me back. I thought “This is a bad sign”… I cried. I rocked back and forth. And I called again…the nurse put me on hold and I thought “Oh God, maybe she’s getting the doctor so he can tell me the bad news…” But she returned on the line and said gingerly “It’s a benign mole”. BENIGN. As in NOT cancer. A wave of relief washed over me.

But lemme tell you, this experience made a profound impact on me. I am slathering BG with sunscreen, even on her ears, because *90% of sun damage occurs during childhood*. I mean I used sunscreen and hats on her before, but now that she’s a threenager it’s a chore, as we do lotion on the face/neck and spray on the body. But I make sure she’s covered because it doesn’t take long to get a sunburn and just 5 sunburns in childhood DOUBLES your kids’ risk of skin cancer. So fight the good fight with the sunscreen folks.

As for me, I diligently use sunscreen but I also cover up a lot with hats and rash guards (shirts made of SPF50 material), since I am somewhat allergic to the sun these days. But I used to blow off moles that looked suspicious–now I am on high alert.

I’m also writing a piece for a local moms blog cautioning them to be ready with the sunscreen and also to take care to have themselves looked over by a dermatologist annually and pay attention to their skin. I feel like this experience was my “call of duty”, and I’m on it.

XOXO,

MLACS

 

Try, Try, Try, Try it Again (learning curve as an ostomate)

In the words of Daniel Tiger, whom BG loves to quote, “Keep trying, and you’ll get better! Try try try!” She will sing this song to me at the most frustrating moments–like when I’m fumbling trying to work the tv remote to find the cartoon she wants. Bless her heart.

Well this weekend was an exercise in futility.

I had FIVE bag blowouts.

Like as in, my colostomy bag leaked/fell off and I had to clean up a literal pile of sh*t.

Five times.

I was doing SO well for the first 10 days post-op, until Friday, when I started to have sharp pains on the right side of my stoma. The pains would come and go, and I found they were worse when I had any sort of compression on the bag. So I tried to wear slightly less restrictive underwear (which I tuck the bag into–these are not ostomy-specific undies, just high-waisted Wacoal briefs I bought at Dillard’s last week). On Friday I saw my home health nurse but didn’t change my bag until after she left. Lo and behold, I found my skin was pulling away from my stoma on the right side where I was having the sharp pains. I was freaked out because:

  1. There was “output” (aka poop) in the crevice and I thought it could be infected.
  2. I had no idea how to address it–there are literally thousands of different products and appliances and I have a bathroom full of samples but needed to google what they are even for and how/when to apply them. So I’m all up-in-arms because I was woefully unprepared for this when I decided to change my bag. FML.

An ostomate wants to be prepared to change their bag. You want to have all your products that you might need within arms reach, otherwise if you have to jump up and search for things with your bag off and your stoma decides to “output” then you have a mess and it becomes a stressful situation.

I tore through my boxes of samples and found some seals–these things are supposed to help you get a good seal around your stoma and prevent leaks. My thought was that I could use the seal to cover up the open wound/crevice on my right side of my stoma, to keep it clean and hopefully make it stop hurting. So I nervously molded the seal and placed a new bag on, and it seemed to do the trick. The next day we got up and collectively took BG to her Little Gym class, where I mostly sat while Mr. MLACS participated with BG. Then we decided to go to a pumpkin patch about a 1.5 hours drive from where we live. We all got ready and I was pleased that I had managed to coordinate our outfits in a fall theme of blue jeans and shades of gray and navy blue–hoping to get a cute family picture. We get inthe car and 5 minutes down the road…

BOOM!

I feel my bag fall off and a warmth in my pants…

So we pulled over into an empty parking lot and I proceeded to clean up the mess. Poo everywhere. Luckily I came prepared–baby wipes, hand sanitizer, ostomy supplies (new bag, scissors, adhesive remover wipes, barrier wipes, gauze), fresh change of clothes and a ziploc bag to put my soiled clothes in.

It probably took me 20 minutes fumbling around in the drivers seat, but I got myself cleaned up and the bag changed. Then exhaled a long sigh of relief. It happens to everyone at some point, and at least I was prepared–I almost walked out of the house without that extra change of clothes and the ziploc bag, but my guardian angel must have been looking out for me.

We went to the pumpkin patch and had an absolutely wonderful time! There were pumpkins galore and lots of fun activities for kids. The air was crisp and the sound of childrens laughter echoed off every tree and hay bale and corn stalk under a clear blue sky. Perfection.

Then we got back to the car and I noticed my bag…was starting to come away from my skin…and I had no more bags and no more clothes, and a 1.5 hour drive home.

F*ck.

I had read that some ostomates would use medical tape or duct tape to hold their bags on in a pinch. And here in the South there is a Dollar General store like every few miles, even on the country roads. So I held my bag on until we reached a DG store and send Mr. MLACS inside to fetch ALL the tape. And chocolate. Because post-op my body craves a lot of chocolate, especially in emergencies.

I quickly duct taped the perimeter of my bag and said a silent prayer that it would hold another 45 minutes until we arrived home, and stuffed my face with a couple Ghiardhelli chocolate squares as I squeeled the tires out of the parking lot.

Just before we reached the house, I felt the bag coming unglued and reached my hand under my seatbelt to try to hold it on a couple more minutes until we reached the house. Then I hobbled inside the house, shouting for Mr. MLACS to bring me a trash bag and a pack of wipes. It was another ridiculous mess. By the time I was done cleaning it up I was thoroughly exhausted and my nerves were shot. My peri-stomal skin was also thoroughly irritated from all the bag changing. Someone brought us dinner, which was absolutely delicious, and we started to watch a Harry Potter movie (in honor of Halloween) and I think I fell asleep on the couch about 5 minutes in.

Then I woke up at 4am, with ANOTHER f*ing bag leak.

F*CK. F*CK. F*CK.

It wasn’t too bad but I had used a different bag/flange and the adhesive made my already irritated skin red and raw, so I had to try to address that. I googled and decided to dry it with a hair dryer and put some stoma powder on it. The first bag wouldn’t stick at all, so I had to cut another one. But finally, I got a bag on.

I was exhausted and laid around all morning, but since Mr. MLACS cannot drive for 6 months since he had his defibrillator/pacemaker placed, I amthe designated “errand runner”. And we needed some stuff from walmart–namely a warm undershirt and tights for BG to wear under her minnie mouse halloween costume at soccer practice that afternoon. So I rallied and schlepped myself to walmart. Got BG’s stuff and a few groceries. Tossed in a bag of peanut butter M&M’s for myself. Got back to the car and…

BOOM!

Bag leak #4 was in effect.

This time, I didn’t freak out. I sat quietly in the drivers seat and ate my peanut butter M&M’s.

Got home and it was chaos because we needed to get ready to leave for BG’s soccer practice. Mr. MLACS got BG ready while I addressed my bag–this leak wasn’t too messy so it didn’t take me long to clean myself up. We went to practice and I took lots of pictures while Mr. MLACS participated with BG–I love soccer so I usually do it with her but not that day, and to be fair 12 days post-op is a bit soon even on a good day. Then we came home and again someone brought us dinner (so lovely being everyone’s favorite charity case as of recently–I certainly won’t refuse a home cooked meal). And again I collapsed on the couch, exhausted and frustrated.

Woke up on Monday morning to…

Bag leak #5!

This was a couple hours prior to embarking on a 1.5 hour drive to see my Colorectal Surgeon and Ostomy Nurse. My skin was still raw and I knew they would have me remove the bag again, so I didn’t try anything fancy, just slapped on a one-piece drainable bag.

We got to the surgeon’s office and my blood pressure–which has been low since surgery–was like 140/80. Clearly, I was stressed out. I asked the surgeon’s nurse if he would “fix it” (meaning sew the skin back to my stoma on the right side) and I was surprised when she said “No, probably not”. Like…what? So he would just leave me with this hole that is causing me leaks and potential infection? WTF?

The Ostomy Nurse came in and explained that the body will “heal its self” and she has seen the skin pull away from the entire stoma and nothing done to repair it. Apparently, this is not uncommon and is actually expected in someone like me because my skin is thinned and my ability to heal weakened from the long-term  high-dose Prednisone I’ve been taking since January. I was disappointed because I wanted my stome *fixed*.

Instead the Ostomy Nurse took a look at my peristomal skin and decided to use an anti-fungal powder in the red areas. Then she chose to fill in the crevice between my skin and stoma with a bit of stoma powder, followed by “caulking” around my stoma with paste, prior to applying a new type of bag–the Coloplast sensura mio flex two-piece drainable bag/base. She used Hollister Adapt stoma powder and paste, and Cavillon 3M barrier/adhesive spray.

I spoke to my surgeon and told him things had gone well up until these bag blowouts, which really makes me wonder if I’m cut out to be an ostomate or if I ought to consider the j-pouch. It is stressful to have peri-stomal skin issues and to live in fear of bag blowouts, on top of the other adjustments of life with a bag. The surgeon said it will get easier. I hope he’s right.

So far, I’ve gone 24 hours without a bag blowout since the Ostomy Nurse fixed me up yesterday.

I’m hoping to have a somewhat relaxing day at home with BG and Mr. MLACS, doing a bit of cleaning and I want to bake a banana cake with cream cheese frosting. Then we’ll trick-or-treat this evening.

And Mr. MLACS returns to work tomorrow. I’m not ready for him to go back, mostly because I just like having him around and also because I’m scared of him going back to work and being stressed out and something happening again–he collapsed at work, if you recall. He was working 12+ hour days and he wouldn’t tell them “No”. He has said he will advocate for himself and insist on shorter hours and will not stray from doctors orders. I’m still freaked out.

But you know you gotta “Keep trying and you’ll get beeeetterrrr! Try! Try! Try!”

XOXO,

MLACS