“Practicing” for recovery

I wrote yesterday about preparing for surgery, and although I have been through this a gazillon times, I forget to mention something very important.  Try to envision yourself with your Post -op limitations and practice overcoming them!!!!!!

Over the years, several people have asked me what I considered to be the worst part of having MS, while the worst symptoms may vary day to day, my answer is…

The worst symptom of having MS, is the one you haven’t learned to adapt to.  By adapting, I don’t mean accepting it, so much as I mean finding a work around or a way to still accomplish your goal.  Sometimes you have to get pretty creative, but most symptoms can be managed with some trial and error.

Getting around your house in a wheelchair

While I have been in a walking boot for a couple of weeks now, after surgery I will not be able to bear any weight on my foot, which for me means using a wheelchair.  I’ve had to use a wheelchair before, but not in this house and for other reasons.  So yesterday my first step was going through my entire house using the wheelchair.  The only trouble I ran into was trying to get into the bathroom.  First of all, the door is only wide enough for the chair, NOT for my hands on the wheels.  Whoops!  *Note to self another home improvement project for next year.

squatty potty The next issue I RAN into (literally) was the squatty potty.

I can not get close enough to the toilet, pivoting on one foot with the squatty potty there, so it had to move.

The pain pills are not going to help with my normal issue of MS and constipation, so better I just make a clear path for using the laxatives I know I will end up needing.  Even “power pudding” doesn’t help with the constipation from Norco.

Selecting clothing for after surgery

Again, I have been in a boot for a couple of weeks, so I know there will be some challenges putting on pants.  Not that I like wearing them anyway, post op visits and physical therapy will require some form of clothing for my lower extremities, so I have purchased some guys basketball shorts to wear for those occasions.  Even those will fit over the cast.

CLIMBING into bed

tall bedThis one may not happen for a bit.  I have one of those really tall beds that you literally have to Climb up onto.

Okay not literally like this one, I am totally being dramatic, but I discovered it is difficult to climb on my bed without bearing weight on my right foot, so I will be sleeping on the couch for a few days.

I have packed a small bag of things to keep me busy, while I am NOT sleeping.  Notebooks, phone and laptop with chargers, tv remotes, and a couple of books.  The only thing I am missing is a mini fridge and a maid.  But at least this isn’t permanent.  (putting the things in a bag will allow me to transport them to another room easily without worrying about dropping them)

Thank you for letting me share my tips with you.  To be honest, this is part of my mental checklist to prepare for surgery as well. I will write more about the MENTAL part of preparing for surgery later this weekend.  I hope you all have a wonderful holiday weekend.  If you do anything fun or adventurous please share pictures so I can live vicariously through you!!!

 

 

 

Teaching my phone to swear

Those of you that have ever talked to me on the phone, in person, gotten a text message from me etc, know that I have a “potty mouth”..  Not only do I frequently talk about “potty” and my bag of pee, but I just can’t seem to utter more than a few sentences without a cuss word or two popping out.  Popping, not pooping, although I do talk about pooping or not being able to alot also.

Last month, or the month before, I had to do a warranty trade on my smartphone, which in my opinion is Not very smart, although some would claim operator error. 😦

I have always struggled with the talk and type technology, because I speak quickly and do not enunciate.  This was proven when I asked my kids to “fix the damn phone” and they politely explained that I don’t enunciate when I speak.  To prove them wrong, I turned on the talk and type and said “ENUNCIATE”, the phone responded by typing E9C8!

SMDH AGAIN!

So now I have this ‘New’ smartphone AND I am cutting down on the number of cigarettes I smoke each day, in effort to quit on August 15, 2018, so needless to say I have been swearing a bit more lately.

After talking out a message that contained some “cuss words”, I forgot to turn off the talk and type feature on my phone before I said,

“It’s not duck, the word is fuck.  I really don’t understand your objection to ass, and on that note what the hell is wrong with shit or even hell?  It’s not like I used all the words in one sentence”

My phone typed….

” It’s not duck, the word is duck.  I really don’t understand your objection to ASK, and on that note what the he’ll is wrong with fit or even ****?

Immediately after reading that I said, “Bastard”, which for the record translated into “Last Turd”.

So I have decided to teach my phone to swear.  I have been correcting THEN saving each of the words that it misspells or ***** out.  So far I have added

piece of shit

fuck

shit

damn

hell

I cant say the C word, but it would probably come out as CANT anyway.

This morning I said, “I am coffeeing” which I know is technically not a word (its a way of life).  The phone typed doddering…which I left because I probably was.

Can you think of anything that I am missing?  When the day comes that I am finally ready to tell that ONE person that got on my last nerve off, I want to be prepared.

 

MS and Gastroparesis- My story

I am going to assume you have experienced Constipation first hand if you are reading this.  If you haven’t or have any questions, I recommend this link to Mayo Clinic for more information.  While Constipation is generally described as having fewer than three bowel movements a week, would you believe that some people are lucky enough to have consistent and almost timed bowel movements?  I personally couldn’t believe that until I starting talking about and asking about “Poop”. If you don’t have a bowel movement regime like that though, don’t worry it doesn’t mean you are “broken.”

My battle with Constipation started years ago, and for years I have jumped through hoops and tried so many different treatments with no relief.  At one point, I even ended up being hospitalized for it.  More people have seen, touched, or in some way “violated” my ass than there are days in the week.  It shouldn’t have been so difficult, THAT is why I am talking about it.

Eat more fiber and lose weight

I am angry that when I asked for help with constipation issues, the first doctor I saw shrugged at me and told me to eat more fiber, drink more water, get more exercise, and lose weight…. Sure I will get right with you on that!  BUT in the meantime….. What the hell do I do?  (Exercise?…. yes I want to run a mile with an extra 10 lbs of shit stuck in my gut.  You do realize I am sitting in a wheelchair right?!?!?)

What do I do in the meantime?

I went to another doctor for a second opinion.  I was all keen on eating better and TRYING to exercise, but being Stuck in a wheelchair didn’t make either of those things very easy.  With limited mobility, I often resorted to cooking prepackaged foods since they were easier to shop for and to prepare.  But I could work on that.  The exercise part still had me stumped though.  The second doctor I saw told me to start using laxative pills and if they worked, to just start taking one every day.

dulcolax warning labelHave you ever read the back of the box for laxative tablets?

On the box itself it says to talk to your doctor if you have to take them for more than one week.  But I’m just supposed to keep taking them EVERY DAY if they work?!?!?!  Seriously?!?!

I asked for a referral to a gastroenterologist.  (When you have an HMO and need to see a specialist, it can take a long time to get an appointment with a new doctor.)

Before I could get into the Gastroenterologist, I ended up in the Emergency Room, because after not having a bowel movement for 21 days, you are not able to add anything to your body.  I couldn’t eat or drink anything, and became severely dehydrated, and had to be admitted.

What is a Soap Suds Enema? What is magnesium citrate?  What is an Upper and Lower GI? What is an Endoscopy? What is a Hiatal Hernia? What is GERD?  What is a colonoscopy?  What is Biofeedback? What is Gastroparesis?

and why did I have to have all of these things before I was 35?  The ANSWER is Multiple Sclerosis.  I felt like I was attending medical school as a patient.  After being discharged from the hospital with a whole slew of new medications, I spent the next year changing my diet, adding more fiber, doing abdominal exercises yet nothing seemed to help.  I was lucky if I had a bowel movement one time per week (so I guess it did help, but still wasn’t acceptable.)

It wasn’t until last year, FINALLY, that I was introduced to Power Pudding.  It’s easy to make, natural, and it works for me.  I don’t know if it will help forever, but I am so tired of testing, drugs, and surgeries.  I don’t understand why the doctors didn’t recommend this first.  (I have ideas, but they involve conspiracy theories about not actually trying to find a cure when there is so much money to be made with Big Pharma etc)

Again, I am NOT a doctor.  I can’t promise that this will fix your constipation, but I can make you aware of it.  If you suffer from Constipation, please don’t wait to start something for treatment.  Of all of the testing I have been through, there was only one that didn’t make me want to cry, and that was only because the nurse administering the test was ridiculous.

The Gastric Emptying Scan

The doctor told me that the test involved eating eggs that would contain a small amount of radioactive material, and then being xrayed or scanned over the course of a few hours to monitor the rate at which food left my stomach.  UM ok?  Eat radioactive material?  I’m in?  When the nurse brought the eggs to me, she was wearing hot mitts like these full arm hot mittsand said, “Now don’t touch these eggs with your fingers because they are radioactive”.   I can’t touch them, but you want me to eat them?!?!??!  I assure you that is the only test I laughed at.

At least she didn’t come in looking like this: radioactive suit

Treating Constipation without drugs

CLEAN THE TOILET…

Best Cure EVER for constipation!!!  I kid you not!… oh wait maybe that’s Murphy’s Law?

It never fails, the same day I clean the toilet, I NEED to clean the toilet again.  (The same way that when smoking was allowed in restaurants, it never failed,  the second I lit a cigarette, my food would be delivered.)

Obviously just cleaning the toilet won’t FIX constipation, but I am trying to make light of one of the worst symptoms I deal with….MS and Constipation.

Does MS cause constipation?

YES, it can, and frequently does.  In addition to MS itself causing bowel issues, often the medications one takes to treat MS symptoms cause constipation as well.  (Yah fun!)….Not even a little….smh

Okay all sarcasm aside, Constipation, when left untreated can cause multiple, even life threatening issues.  I found this link from Mayo Clinic very helpful in providing information about causes and treatments for constipation.

I am not a doctor, so I can not tell you that one type of treatment will work for you versus another, but I CAN share what works for me, and you can talk to your doctor about trying it.   Power Pudding was recommended to me by a therapist, while I was going through Pelvic Floor Therapy. (I am not endorsing this clinic, but they have a good explanation about the therapy.)

What Is “Power Pudding”?

Power pudding is a natural homemade “treatment” for constipation that is frequently used in nursing homes and assisted living centers to help people find relief from constipation.

What are the ingredients for Power Pudding?

The recipe for “power pudding” is as follows: Combine the following, and store in an airtight container in the refrigerator

power pudding ingredients

1 cup applesauce

3/4 cup prune juice

1 cup Cream of Wheat (uncooked)

3 tbsp ground flax seed

When I began using power pudding, I started with 3 tbsp, followed by a 16 oz bottle of water each day for 3 days.  If I didn’t find any relief after 3 days, I was supposed to increase the amount of power pudding I consumed by 1 tbsp for another 3 days.  (same amount of water).  The goal was to have a bowel movement the size and shape of a small banana every day….. I literally LOL at that.  (Considering “My Normal” ,was maybe once a week if I was lucky, and only after using an otc drug etc for a couple days I literally LOL’d.)  I thought for sure they were as full of shit as I was (pun intended)

Does power pudding work for constipation?

I began taking it “as directed” and had a bowel movement on the second day.  Nothing like this banana she spoke of, but holy shit…I shit!!!!!  On day three, I had another Bowel Movement, (still not the banana type she talked about)…… banana

but having a BM 2x in one week had to be a record for me.  On day four, I increased the  “dosage” by another tbsp. and started having some kind of BM every day.  I am still “working it out”, but am so excited to finally have some relief I thought I would share. ( talking about poop, makes me feel like everything that comes out as an  innuendo)

The most full of shit I have ever been

21 Days without a Bowel Movement! No that’s not a typo– literally 21 days.  There are no words to describe the amount of pain I was in.  Phone calls to my doctors resulted in recommendations for OTC drugs and a referral to a Gastroenterologist.

otc constipation

Looking back I don’t understand why I wasn’t referred to the Emergency Room after the first week of trying their recommendations with no luck.  I chose to “self medicate” instead, taking 2 pain pills instead of one. ( making the whole problem even worse)…muttering something about hindsight.  By the 21st day, I did end up in the Emergency Room and subsequently admitted to the hospital for a week.  I am going to skip talking about the whole “cleaning out process” for now, but it did give new meaning to the phrase, “the shit hitting the fan”.

I know that the tone and language used in this entire post is sarcastic, that is how I deal with talking about difficult situations.  Most people don’t talk about “pooping” on the internet, but because constipation can be deadly, I thought it important to share a tool that I have found to help.  If you are suffering from constipation whether or not it is because of MS, don’t suffer in silence….talk to your doctor, talk to someone and realize there is help available.  I know that it’s an uncomfortable subject to talk about, but the consequences of doing nothing are way more uncomfortable.

LINK to MY HISTORY  (future)