Musings from an Orthodox Jewish mom of twins with Autism Spectrum Disorders, ADHD, and one twin has encopresis, megacolon, and a cecostomy. I'm tired. :)

Archive for the ‘Health’ Category

DME Fun

After many hours on hold and many phone calls over the past month, Wilma’s DME will no longer provide us with supplies for her cecostomy. Need a company willing tp provide AMT mini one (or Mickey assuming they’re interchangeable), gravity bags and connectors, and gauze. Apparently this isn’t the only company having trouble billing Wilma’s insurance for cecostomy supplies—- the companies only want to deal with enteral patients. So now I get to call all the DME companies again like I did the week she had surgery 6 years ago. YET ANOTHER REASON I’M EXCITED TO MOVE FORWARD WITH ANOTHER SURGERY for her to get rid of this darn cecostomy. Hoping for ileostomy within the next couple of years. In order to do that, we go back to the specialist in May and then move forward with colonoscopy and colonic manometry on an autistic 16 year old—– and this is the easier part of my life with two teens with special needs.

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Fred’s Ankle

A week ago (a couple days AFTER the police/ambulance incident with Wilma)—– Fred was running to attack us (just a regular day around here) and fell and sprained his ankle really badly. He was in a splint for a week. NOT a walking boot, so for this week’s appointments I got to roll him in a wheelchair– -I like pushing him around. Today we took off the splint and he no longer needs around the clock pain meds…. but the limp is still super severe. If the limp is still this bad in a few more days I guess we’ll go back for more xrays— friends are telling me that the swelling that day could have obstructed a view of a fracture. Just like the week of my wedding when my mother in law whispered to me as I limped down the aisle “heel! Toe!” (I had knee surgery in April 1998 and got married in June 1998— I didn’t dance at my own wedding!) I’m telling him to TRY to walk normally— heel then toe. Heel then toe.

The sprained ankle slowed him down…… he hasn’t been able to run after us in attack mode in a whole week now— my blood pressure has been almost normal on both my blood pressure meds!

Summer Schedule Example

Monday— zoom meeting with board of dd tech people about a new requirement from the board of dd to help Wilma and then in person meeting with Wilma to go over it. Tuesday— Wilma swim lesson. Wednesday— Wilma meets with our board of dd behavior gal. Thursday—- Fred meets with our board of dd behavior gal (nope we can’t do both at once—– we DO do both at once for their meetings with the agency that does their pre-employment classes and it’s not going great…… they have VERY different needs).

Just a typical week around here. Stop asking me what I’m doing this summer, y’all. ūüôā Other than all that, I’m babysitting, running my business, ATTEMPTING to do laundry and clean my house, do medical treatments on a stubborn teen, do pharmacy time (takes a good 30 minutes every Tuesday to sort 30+ pills per day for three out of four family members (hubby deals with his own stuff), balance a checkbook that won’t balance, pay bills that eventually DO need to get paid…..

That Darn Colon

I had a GI appt for Wilma on Friday. The current update is….. no testing or procedures for the next year. Cecostomy use once a day on weekdays and TWICE a day on weekends. Yay, another reason for her to trigger her brother every weekend with her obstinate behaviors and fight with me about something. A year from now we start discussing resectioning and in order to think about that we have to do a colonoscopy. The fun of doing that (and colonic manometry to add to the fun fest) on an autistic 16 year old…… oh that will be a joy. As for her spring break this year, her friends went to CA and FL…. .she went to the dermatologist (kicking acne’s butt) and the GI doctor…….

Women Get More Autoimmune Diseases Than Men?

Just an article I found interesting and wanted to save on my blog to read again.

https://www.theatlantic.com/health/archive/2019/06/women-autoimmune-diseases-pregnancy/591901/?fbclid=IwAR35zZU8B5Y2GdPhme0kdT-QGCsY7T6cTAQcli02KruUwZR8NLthNrgywg8

My Health Sucks

I got a couple of new diagnoses this week and now I’m on a total of EIGHT. EIGHT. DAILY. MEDICATIONS. PLUS supplements. I don’t get the flu, I haven’t gotten covid, it’s been YEARS since I’ve had a fever. But I have all this chronic JUNK that affects me…. and I’ve had fourteen surgeries in my lifetime too. Taking care of my health is becoming a JOB. Just what I need— another UNPAID occupation, along with being a full time advocate with doctors, therapists, and schools to two complicated teens! I’m only 47, and only 50 pounds overweight really— which is obese, but it’s not like I’m even close to 200 pounds, let alone 300 or 400. I have more diagnoses than close friends at this point. At my doctor’s appointment on Friday I reminded my doctor why I’m there and what the recent bloodwork showed and he CONGRATULATED me on my new diagnosis. Hardy har har. Two of my medications are exactly the same as two of my husband’s. Getting older is…. interesting.

COVID 19

Well now all of a sudden we’re living what will be a chapter in our grandchildrens’ textbooks.¬† If anyone is living under a rock….. the whole world is passing around a novel coronavirus (it probably started in October or November and for most people it’s no big deal but the death rate for those who are elderly or suffering other health conditions is extreme enough that bit by bit over the last couple of weeks everything except groceries, pharmacies, and gas has been shutting down.¬† Places of work, schools, restaurants, entertainment venues….. it’s all on a long break.¬† As is my sanity.¬† I love my children but there’s a definite reason I’m not cut out to homeschool.¬† We’re about to start their second week of no school (and no time for mommy to work)‚Ķ.. it’s a disaster for them and us emotionally, it’s a disaster financially— it’s just a disaster all around.¬† THANK GOD, though, none of the four of us have this illness as far as I know.¬† I’ve been coughing and blowing my nose daily since January, some weeks worse than others but I think at my age (45) I’m finally beginning to develop allergies since I’ve never had a cold last for months.¬† When the dust settles I’ll go back to an allergist (I had a horrible case of hives in 2005 so I’d been to one before, but that allergy cleared up and I was fine since then).¬† However, I’d been functional (as functional as someone with all my other health stuff CAN be— I’ll get to all that at some point) enough to do my appointments, my kids’ appointments, errands, etc etc.¬† But now?¬† All day in my jammies.¬† Listening to my kids bitch about school work.¬† Breaking up my kids’ fights.¬† Fun times, y’all.

US Intelligence reports warned about a possible pandemic back in Jan and Feb.¬† NOW in mid March we’re finally shutting down and staying home.¬† I have so many political thoughts…. but…

Let’s look on the BRIGHT SIDE!

1) My kid who lives in pajamas actually gets to live in pajamas. I make her shower and change pajamas, but…. details.

2) We sleep as late as we want and nap when we want.

3) The “school day” is less than 2 hours long.

4) Gas prices went way down.

5) I’m still stressed because I have two autistic kids at home I have to keep on task and keep from killing each other, but it’s a different TYPE of stress. No more juggling 83 million appointments a week— all non essential appointments are….. vanished from the calendar. Even my surgery in June will likely be postponed because it’s not an emergency and nobody will be caught up by then.

6) MY HUSBAND IS HOME EVERY NIGHT DOING DAF YOMI BY SPEAKER PHONE! No, I’m not sitting there listening, but just hearing a bit of it in the background as I’m doing other things makes me so happy…. it’s a huge part of his life of which I’ve never been a part.

Having listed all the positives….. um…. let this nightmare be over SOON.¬† PLEASE?

I Need Another Surgery

This one will be #14 I think (I’m losing count).¬† This will be very painful, but a short recovery from what I understand.¬† This one is NOT kidney related.¬† Even though I’m sort of anonymous here, some of you do know who I am and I’m not sure I want to share surgery details this time– I’ll think about it.¬† If you know me super well, message me on facebook and I’ll tell you— I just don’t think I should put it out there for the world.¬† It’s a problem that I tried managing with medication and the medication made the pain¬† significantly better….. but caused another major problem.¬† I’ll see the surgeon on March 12th and then I’ll schedule.¬† Fun times.¬† During my hospital¬† VACAY (I get to NAP!¬† I get a break from chores and working on Wilma’s colon!) I will insist that hubby once again do Wilma’s colon— and once again he will need training because he hasn’t done it since once the last time I had surgery.¬† Remember when I said we’d only be using a cecostomy for a couple of years?¬† I lied.¬† There’s no way we’ll even TRY to wean until halfway through high school at this point according to the specialist.

Look What Came Out Of Me!

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The surgeon called yesterday and bumped my stent removal from tomorrow to yesterday! One was way down low so all the pain right there makes sense. Post procedure pain last night but for the first time in 5 weeks I can walk normally…. no stent pain!!¬† Today I did everything I’ve been WANTING to do….. tidy up, put away laundry, tidy up…..¬† ok, it wasn’t a fun day but my goodness I feel so much better physically and mentally!

The surgery to insert these puppies was at the end of September.¬† The surgery to take out the kidney stones and put these puppies back in was at the end of October. This health nightmare is now over.¬† Ok, aside from a 24 hour urine collection, ultrasound, xray, and follow up with the surgeon all in a month.¬† ūüôā

The stones were calcium oxalate so no more spinach or almonds for me.  Gotta be more careful with my diet.

Between Two Surgeries

I’ve had twelve surgeries in my 45 years thus far.¬† Only eleven, had you asked me last Thursday.¬† I’m now in a holding pattern between surgeries 12 and 13 because of COURSE I have time for all of this with all that’s going on with my children, right?

A couple of weeks ago I had weird tummy pains and diahhrea and I RARELY get diahhrea.¬† The last time I had tummy pains and diahhrea and it wasn’t a 24 hour bug…. I was in the ER with a UTI.¬† So because I had minor urethra pain¬† as well with these pains I called my doc and asked for a UTI antibiotic.¬† Without seeing me, he prescribed it.¬† A few days later, I was fine.¬† A couple days after that, I got a lot worse, so, self diagnosing again, I decided I was getting side effects from the antibiotics so I did what every busy mom does at some point— I took myself off the antibiotics.¬† For a few days I was fine.

Last Tuesday I had HORRIFIC pains in my right side.¬† They went away after 15 minutes and I was fine the rest of Tuesday and Wednesday.¬† I chalked it up to gas.¬† The pain wasn’t near the kidney, really.

In 1995 I had kidney stones and with great pain meds and a pee strainer was able to pass them on my own.¬† On Thursday afternoon when I had horrible kidney pain and started peeing blood I realized that the past couple of weeks had been leading up to this realization—- oh crap, the stones are back.¬† I called a friend to drive me to the ER and drive back home to wait for my kids to come home from school until my husband could be here.¬† I figured I’d get great pain meds and a pee strainer and go home Thursday night.¬† Wrong.

I have one small stone on the right causing all the pain and one LARGE stone on the left causing urine to back up to where it shouldn’t go.¬† The doctor at the ER on Thursday afternoon was far too peppy when he told me there was no way I’d pass the big one on my own, and off I went via ambulance to a different hospital for stent surgery.

I had last eaten at 11:00 Thursday morning while taking my kids to a double psych appointment (ironically at the hospital where I now was on Thursday night!). Surgery got delayed and delayed and delayed and finally on Friday afternoon at 2:00 (when I was feeling super weak and dizzy from not having eaten) I had the stents placed.¬† I was in the hospital until Saturday night.¬† Bikkur Cholim cooked our Shabbos and Rosh HaShanah meals and I’ve been home resting through Rosh HaShanah.

Now I still get minor kidney pain every couple of days but not as bad as Thursday, and I have constant stent pain.¬† I’m peeing blood 100% of the time now.¬† I am VERY much looking forward to the next surgery where they will go in and zap the stones!¬† Meanwhile, life goes on and I can’t lie in bed until whenever the next surgery gets scheduled so I’m¬† in a pattern¬† of…. do a little laundry, lie down with the heating pad….. cook a little, lie down with ibuprofen…… do Wilma’s colon¬† treatment, lie down to watch tv…….¬† I can’t say I mind the forced rest!

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