Unanswered Questions

Several people have noted that some of the questions they have submitted—usually pregnancy related— have gone unanswered. Generally speaking, I think that there could be several different reasons why someone might not feel comfortable speaking about a certain topic. Sometimes it brings up painful memories that they aren’t ready to talk about. Sometimes they feel like it brings down the vibe of an otherwise lowkey blog. And sometimes, they are not allowed to speak on a topic due to a NDA as part of a malpractice case.

I am truly sorry if it seems rude and I assure you that it was never my intention. I hope that everyone can understand where this is coming from.

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Storytime: Kids Say the Darndest Things

As many of you already know, our son has classic autism and is in a special class at school for children on the spectrum. A few years ago, he had a classmate who was very talkative and loved to ask a lot of questions. He was fascinated by my wheelchair and often said things like “OMG! Your legs still don’t work!” or “You can’t feel your legs. Can I touch them and see if I can feel them?”

For obvious reasons, the teacher tried to explain that it’s not really appropriate to focus on someone’s disability and encouraged him to make small talk like they practiced in their social skills group. The next time I visited he was prepared with a long list of socially acceptable questions. Some examples include :

Where did you go to school?

Did you play sports in middle school?

Did you play sports in high school?

Who are your parents?

Did they play sports?

What is your favorite section of the library?

After he quizzed me throughly, he asked my husband the same list of questions until he came to the part about his parents. Completely serious, he asked if my husband and I had the same parents. Of course, our first reaction was to laugh, but then we explained that we are married and N’s parents. He was very confused and got a little agitated.

“But my mom said, only normal people can get married and have kids,” he said sadly.

“When was this?” I asked.

“She was talking to my dad. She said I would never have a wedding or a real life because I’m not normal. Are you sure N isn’t your brother? ”

This broke my heart, because I have worried about the same thing. The world can be cruel. I know that my N is a wonderful person, but could someone see past his struggles and accept him as is? I decided that I would tell this child what I plan on telling N in the future.

I began “Honey, I think you misunderstood your mom. Sometimes it’s hard to find the right person, but when you do they won’t see you as different. They will see you as special and the perfect person for them.”

My darling husband continued with ” I have loved being married to GG and I wouldn’t change anything about her, including the wheelchair. You don’t have to get married, but that’s your choice to make when you’re older. You can do anything you want. ”

The moral of the story is that no one’s future is set in stone, but especially with kids. A diagnosis can be a stumbling block, but it doesn’t dictate what we can do. Also it’s important to remember that our children are always watching and our attitudes can affect them tremendously. Let them see themselves through our eyes and see how awesome they truly are.

Gimpy Story Time: The Night That I Accidentally Became Part of a Drag Show

I’m going to warn you that this story is going to sound too weird to be true, but it’s not even the weirdest story I have.  However, it is the most fabulous one, featuring a glitter beard, a crocheted ball cap with an attached unibrow, and  veggie burgers.

Before this pregnancy sapped the life out of me, I had a little side gig.  It was basically gimpy mystery shopping, but instead of just reporting on the service, I also had to evaluate wheelchair accessibility and any other accommodations offered.  This job was at a little club that specialized in drag shows and comedy sets.  It was like a knockoff Hamburger Mary’s.

I did my first walk through right before they opened so that I could see what kind of arrangements would be made for my service dog.  I didn’t take her to the actual show because I felt like she would be in the way since she’s a bigger dog.  This turned out to be very fortunate because she probably would have misunderstood the situation and thought I was being attacked.

Once the show started, we were seated at one of the few tables since a booth would be too difficult to transfer into.  This put us right in front of the stage and I was having a ball.  We already had a couple of customers come up to admire my super weird Sasha Velour tribute bald hat with an attached unibrow that I crocheted and my burly husband’s pink glittered beard.  (He’s just as weird as I am).  Keep in mind that I squeeze myself into a 16 inch child sized wheelchair because it’s easier to maneuver in small spaces.  The people who came up to us noticed the chair, but I doubt anyone else did.

Since our tickets, food and travel expenses were paid for by the owner, I decided to use the $100 I would have spent to tip the performer and the waitress.  I’m not sure if it is like this everywhere, but here, you don’t throw money on the stage.  You hold it up and they come by to take it during the performance.

I’m not sure if she thought I was a VIP because we were seated so close or if she was just excited about the $50, but she grabbed my hand and tried to pull me onstage.  I shook my head, but she kept pulling.  My husband and I both started yelling “I can’t!” and point to my  wheelchair. At first I was afraid that she couldn’t hear me over the music.  Apparently she did because she tried to pick me up.  Now this wasn’t some delicate flower.  This 6 foot tall drag queen was determined to pick me up.  Unfortunately, seatbelts are designed to keep me in place through falls, car accidents and, apparently, attempted drag queen abduction.

An audience member next to us figured out what was going on fairly quickly and had the DJ turn off the music so the DQ could hear me.  She was horrified, but the rest of us were laughing like big donkeys.  It was so crazy that everyone assumed that it was part of the act.   To make matters worse, my condition causes my joints to be hypermobile and my shoulder dislocated.  It literally happens 3 or 4 times a week, but it did look really scary when my husband popped it back.

I thought the manager and the DQ were going to have heart attacks.  Once I assured them that I was fine and having a great time, they went back to the show.  The lovely queen refused my tip, but she did take my crocheted “wig”.

Christmas on Wheels

I think I should start off by explaining that although we are a Christian family, we are not allowed to celebrate Christmas as a religious holiday.  We don’t have midnight mass or nativity scenes, but we do like the love and charity of the holiday spirit.   There are a few challenges presented by my health, but we still manage to have lots of fun.  Below are some tips that I have found to make the season a little easier.

 

Just Say No:

It goes against everything that you hear, but if you don’t have the time or energy to do something,  then say so.  Between friends’ parties, kids activities,  family gatherings,  and work celebrations,  it can get really hectic.  It’s no wonder that people are so stressed out this time of year.  That kind of stress is harmful to anyone, but especially those of us in poor health.  It’s just not worth it and your real friends should understand.

 

Save a Little Dough with a Little Dough:

Being ill is very expensive so most of us don’t have a ton of money to spend on gifts.  I decided to just make cookies or other homemade treats for most of the adults on our list.  A great way to save time and money is to make one base dough and then use add ins to flavor each batch differently.   I will be sharing the recipe in an upcoming post.  If you can buy the ingredients at a warehouse store like Costco then you could make these for pennies.

 

Release Your Inner Martha Stewart:

Cookies might not work for everyone since some people have special diets or food allergies.   Try making some of your presents.  There are plenty of tutorials on easy projects to make on a small budget.  You can even convince the kids to make a few, Tom Sawyer style.  Here are a couple of videos to get you started.

 

 

Find Out Ahead of Time If a Venue is Accessible:

I have gone places that I assumed were wheelchair friendly only to find a makeshift ramp/deathtrap or worse, a burly dude who offered to drag my wheelchair up the stairs with me in it.  Some people feel okay with it, but I am just too paranoid about falling.  It may seem a little embarrassing to ask detailed questions, but it is better than being turned away at the door.  It’s not just ramps that you need to worry about.   Doorways can be too small for a standard size wheelchair so take measurements and call to see if it will fit.  If you are hosting a party and plan to have guests, you can usually rent temporary ramps from medical supply stores.

 

Cut Back on Decorating:

Trees can be beautiful,  but they are time consuming.  A freshly cut one is expensive and messy, plus it takes up so much room.  You could hang a few of your favorite ornaments around the house and drape the garland around the doorway.   If you can’t do without a tree, try a tabletop one and you can even recreate the scent with a few drops of pine essential oil.

 

Be Frugal,  But Charitable:

I’m one of those people who doesn’t want gifts.  It’s not that I don’t appreciate the thought.  I just feel like it’s a children’s holiday and I don’t want someone to spend money on little old me.  For those who insist,  I ask for them to make donations to my favorite charity.  It’s a special needs child/adult daycare and their clients are always in need.  We like to donate money as well as hand out cookies and things I crocheted throughout the year.   It really gets us in the Christmas spirit to see how happy it makes everyone.  The next time you struggle to find something for the person who has everything,  this might be the perfect solution.

 

A Feast Fit for a King…But Not for a Celiac:

Parties are full of food which can be disappointing for someone with dietary restrictions.   If you are limited on what you can eat, don’t assume that there will be something available.   Even well meaning hosts may think a dish is safe, but youh might need to worry about cross contamination.  I simply pack my own snack.  It might look weird, but at least I won’t get sick.

 

 

 

 

(NSFW) In the Words of Salt n Pepper…

Let’s talk about sex, baby!

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I have had several people ask me about my sex life or just gimpy sex in general.  I thought it would be fun to answer them all in one monster post.  I do think that I should warn you that I don’t have a filter and I’m pretty open about sex.  If you are more modest then this may offend you.  The following post will contain discussions about human anatomy, fetish, sex therapy, sex workers, etc.  If you aren’t comfortable with any of this, then I understand and I will see you in the next post.

Do you have real sex with your husband?  If so, how?

This was by far the most frequent question asked.  I have to admit that I laughed at the “normal” part.  I never really cared for “normal” anything,  but I’m assuming they meant vaginal intercourse.   I have had 4 vaginal surgeries so we couldn’t do it that way while I was recovering each time.  There are other ways to be intimate and we took advantage of them all.  When I am okay for intercourse,  we do it like anyone who is able bodied.  I can even get on top if I am careful and hang on to the headboard for leverage.

 Do you still like sex?  Isn’t it just numb?

The spinal cord is a funny thing.  Someone can be paralysed or, in my case, have partial paralysis and still have quite a bit of feeling below their injury level.  Many people can’t feel anything superficial, but feel deep pressure in the muscles underneath their skin.  Some report that their nerves act strangely after.  For example, someone could be touching their back, but they feel it in their butt.   Others, like me, experience increased sensitivity and actually enjoy sex more after their injury.

 Is there anything different that you have to do, medically or otherwise, to have sex?

For me, not really, but a lot of wheelchair users do have some special needs.   Catheters are very common in the wheelchair community.   I have a sacral nerve stimulator that helps to stimulate the nerves that empty my bladder, but not completely.  I only need to cath 2x a day so I use a straight cath that is inserted to pee, then removed.  For those of us who can’t pee on their own at all, many people use an implanted catheter which means that it stays in the bladder.  A Foley catheter is inserted into the urethra and to have sex, a man can tape the tubing up the shaft of the penis and cover it with a condom.  A woman can simply push the tubing to the side.  This can be very uncomfortable so a supra pubic catheter  (a surgically implanted device that accesses the bladder through the belly) is often used.  Depending on the severity of the injury, men can have issues getting or maintaining an erection.   Viagra and vibrators can help tremendously.

Can you recommend anything that could make sex easier for someone with poor mobility?

Sex swings are very helpful and a lot of fun.  Many of us have a hydraulic lift that can used as a gimpy sex swing.

https://avacaremedical.com/pmi-hydraulic-patient-lifter?fee=14&fep=11212&gclid=Cj0KCQiAi7XQBRDnARIsANeLIetVdSlSwRDCNKu9_b7b-HkKYrdElLy9iS84gQk9yhkuEcm7rw9NCRgaAl0HEALw_wcB

pmi0087_hydraulicpatientlifter1

Sex furniture is very popular with able bodied people.

https://m.bonanza.com/listings/liberator-esse-lounge-chair-sex-lounger-64l-x-24w-x-24h/434098180?goog_pla=1&variation_id=221967627&gpid=173784728461&keyword=&goog_pla=1&pos=1o17&ad_type=pla&gclid=Cj0KCQiAi7XQBRDnARIsANeLIetgLF6pGuJqFHE894b60sBQlgYFAAylnW2sv7A2OqqbYrc7hDN7QqoaAvJ3EALw_wcB

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https://www.amazon.com/dp/B00690D9WQ/ref=cm_sw_r_cp_awdb_hXBdAbP4421M3

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For those who have problems with movement,  The Intimate Rider can assist with thrusting.   It’s basically a sexy, gimpy rocking chair.

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So does your husband have a fetish and that’s why he is still with you?

I won’t comment on my Hubby’s kinks in general,  but I will say that he isn’t a devotee and he isn’t trolling the medical supply store for dates.  A devotee is someone who has a fetish for disabled people.  I’m fine with whatever happens as long as it is safe, sane, and consensual, but I do have an issue with using someone as a gimpy sex toy.  Don’t use us as some weird bucket list item, but then refuse to date us.  We’re people, not sex slaves on wheels.

 

 The Happy Ending

This has become a ridiculously long post, but I think I covered most of the questions.  I hope this is helpful for curious able bodied people,  but also for wheelchair users who think they can’t have sex.  Doctors and caregivers often overlook sexuality in the disabled.   Many treat us like children which is very unfair.   Sex and intimacy are an important part of relationships and life in general.   I also wanted to note that I am not a doctor and this isn’t a replacement for medical advice.   This is based on my friends and my experiences so other people do things differently.

Gimpy Spice

Sometimes it’s possible to find something as simple as spices and herbs that can reduce pain and treat inflammation.   Here are some of the ones I use.

 

Capsaicin:

This is of course not a food itself, but a chemical compound found in peppers. You can purchase it in pill or a cream, but it is so easy to add to your diet. You will find the highest concentration in chili peppers, but it is also in bell peppers, jalapeno peppers and cayenne peppers. Capsaicin has little to no side effects overall, but if you have an allergy to peppers or sensitive to hot food you would probably want to stay away from it.

Capsaicin is still being studied, but it has shown positive results in arthritis,  lupus, and other types of inflammation. Recent studies are also showing that muscle pain specifically is affected by the Capsaicin because it has phytochemicals that target it.

Turmeric:

The Mayo clinic and other prevalent research institutions are still studying the exact reason that turmeric is so effective, but it is known to treat pain such as joint swelling and stiffness. One of the chemical compounds in turmeric that has anti-inflammatory properties is curcumin. If you don’t want to go through the entire process of making a meal with turmeric in it, you can take it in pill form. If you notice that you have some stomach upset after you take your turmeric you will want to cut back the dose, higher doses can occasionally cause digestive tract discomfort.

Cherries:

I love cherries so I was very excited to find out about this one. The chemical compound in cherries that makes them turn red is also the compound that will help fight pain in your body, that compound is anthocyanins. It is these nutrients that are antioxidants that help to boost your immune system response and fight off inflammation. Those who have studied how the body responds to anthocyanins will tell you that they have the same effect on your brain receptors as the compounds in basic pain relievers such as aspirin and Aleve.  You can also drink fresh cherry juice or use frozen cherries in your morning smoothie.

Ginger:

This is another spice that can be added to foods or made into a tea. Ginger has been a favorite for calming upset stomachs. Ginger is known to block the certain receptors in the brain that causes vomiting, but calming your stomach shouldn’t be the only reason you reach for the ginger. It is known to help with inflammation, chronic joint pain, migraines, standard headache pain and arthritis. Ginger is a very easy supplement to take because you can put it in so many different things.  Ginger ale contains little or no ginger and a lot of sugar so it’s best to avoid it. You can, however, use ginger in smoothies, juice, make tea as well as cooking with it. There are lots of great recipes with ginger, but my favorite is Asian style stir fry. It can take 7 days to start working, so be patient.

Yogurt:

Chances are you have seen commercials about yogurt being good for your digestive tract, but you likely haven’t heard that it can also help you when it comes to chronic pain. The same bacterial strains that help with the bloating you can get in your stomach attack inflammation if you start ingesting it on a regular basis. The key is making sure the container says active live cultures on it. If you don’t have a yogurt with those cultures in them, chances are it will not work.

I am certainly not a doctor and can’t give you medical advice.  I just wanted to share some of things that have helped me based on my own experience.

Gizmopal 2 Review

This is not a sponsored post. We have really enjoyed using N’s and I just wanted to share our experience. It has given us a wonderful sense of security that is worth more than gold.

I suppose I should start with a little background on N. He was diagnosed with classic autism before ASD was redefined. I’m not trying to get into a “my kid is more autistic than your kid” contest. I just wanted to illustrate his level of disability. He is verbal with people he knows well, but even then he has a very hard time reading a situation and communicating what is going on. For example, he is convinced that Jesus is a zombie because He rose from the dead and no one can convince him otherwise. It’s adorable, but he would really be at a disadvantage if he needed help.

When we decided to send him to school part time, I really worried that he might get lost and not be able to ask a stranger or even a police officer for help. It’s a very real threat that often ends badly. This study shows that almost half of all children with ASD wander regardless of where they are.

https://www.autismspeaks.org/science/science-news/study-confirms-autism-wandering-common-scary

We both wear medic alert bracelets for our genetic disorder, but it is so rare that it is more likely to confuse EMS rather than help. I looked into a GPS device so we could at least track him if he wandered off. Some were crazy expensive and some were very unreliable according to other reviews. I had a hard time finding something that would work for us and still be durable enough for a nine year old boy.

As luck would have it, dropping my phone in the tub was the best thing I ever did. When we were at the Verizon store, our friendly sales associate immediately offered to show us the new Gizmopal. He has worked with us before so he knew about N’s condition. It’s going to sound like I am exaggerating, but it really is this awesome and the perfect solution.

Some of the features include:

  • Program up to 4 numbers that can be called by the device. Other numbers can’t be dialed.
  • Two way calling so I can call him and it will automatically pick up after 10 seconds
  • GPS tracker that can be checked in real time through the Gizmohub app
  • The app is super easy to use. I am not very tech savvy, but I was able to program his numbers and set location boundaries in a couple of minutes.
  • It’s very reasonably priced at $80 with a contract.
  • The best part is how kid friendly it is. In addition to making phone calls, the buttons make cool noises and tell time. Of course, it is comfortable, durable and waterproof.

Here is a link to more information and a store locator where you can pick up one of your own.

https://www.verizonwireless.com/simulator/LG/gizmo_pal_2/embedded.html