Trudy Triumph's Neurogenic Bladder Blog

Enjoying Life and Getting Out

How old would you be if you didn’t know how old you are?

After school I was visiting with my team and we came to the realization that we all had bodies that were misbehaving..We got a good laugh because as we are all about the same age, we were all living the older version of life on the edge.
There is something crazy fun about a Friday afternoon at a High School. The kids are making plans. The staff is giddy with relief and so excited to spring out the door for a busy weekend. What a contrast to what I wanted to do when I first found out that I had a neurogenic bladder and had to use intermittent self catheters just to pee. Everything in me at first wanted to stay home, next to my toilet, and nurse my aches and pains.
Honestly the best thing to do when your body is going SOUTH is to allow your spirit to travel NORTH. Find a delight, take up a hobby, my new one is blogging.

What do you think?

Needing urinary catheters to accompany me on my daily activities I have found some stashing places that keeps me safe in case I run out and forget to bring them along.
1. My or my husbands car glove compartment.
2. Work
3. Kids or friends homes.
4. All of our home restrooms
5. I think all first aid kits should have one, don't you?

My Quest for Health

After the initial diagnosis of Neurogenic Bladder and the testing done to discover exactly why all I really wanted and still do want a healthy body.  WHAT ELSE CAN I DO?  How can I help myself?  I thought a naturopathic doctor could help me get on the right tract so I gave it a try.  She gave me many tips, here are some;

  • Drink lots of water.  Bacteria have a problem holding on to the bladder wall if you drink a lot.  Drinking throughout the day is important and you don’t need to feel thirsty.
  • D-Mannose, a Sugar found in cranberries is good to ingest. It binds its self to E-coli and is a good measure to fight against bladder infections. Beside eating and drinking anything cranberry, I also buy the D-Mannose in powder form at a health food store.
    • Use digestive enzymes.  They help if you need to take an antibiotic and kill of the healthy enzymes needed to digest food.  Probiotics are found in yogurt

 (Probiotics
Probiotics are bacteria that we eat and they’re good for our health. They are found in a number of foods that are readily available in the supermarket, and they taste good. You can support probiotic growth by increasing the amount of cultured dairy products you eat, such as cheeses and yogurt, and the foods that encourage probiotics from these dairy products to multiply even further: spices, tea, red wine, berries, apples and beans.

  • Use bio-identical hormones to the inner vaginal labia.  For postmenopausal women the labia become this and they become more prone to bladder infections.  The hormones help to prevent infection.
  • Exisercise at least four times a week.  Not easy for me!
  • Other health aids she suggested are; Vitamin C, Hydrocortisone, DHEA, Glutamine Powder, and  Berberine plus

        In the morning, I use my bullet blender put in a scoop of veggie protein, yogurt, blueberries, a scoop of D-Mannose, glutamine, a liquid form of b12, and a liquid vitamin mix I get from a mail order place plus a lot of what is listed above.  This mix gets me through a busy morning.

 We only have one body go for it!..More Later…

 

Did you know that people with a full bladder were able to better control and “hold off” making important, or expensive, decisions, leading to better judgement?
My mother always wanted me to be smart. Now I can tell her.

Slimy Tubes & Tricky Situations

 I had so much to learn in the beginning about the different types of catheters a person with a neurogenic bladder could use.  I was shown a few single-use catheters at my next doctor’s appointment.  I selected a Lofric single-use catheter, that is lubricated with water. It became a hassle to carry sterile water, so I then ordered small lubrication packets called E-Z Lubricating Jelly. 

Privacy is important to me.  I don’t want others to know about my hygiene regiment, so at times situations get complicated, when I need to pee.   At work, I work at a local high school, I tried restrooms closer to my classroom, but that arrangement did not work out. It didn’t work out for a number of reasons: the first is that I need a sink in the stall; the second reason is kind of funny.   Since I cath, I have the flexibility in how I stand when I relieve myself.   I have a penis of sorts and can stand facing the toilet.  What if someone notices the position of my feet?  The toilet in the nurse’s office is perfect because there is a sink in the toilet area; it is essential to wash my hands.  I also like to keep  a stash of catheters handy for me to use.  So, I now have complete privacy, except for the fact that there are a million kids that can see me leave the nurses office, at times.  I am lucky I work with a population that can be a bit self-absorbed and not even notice my trek to the nurse’s office.

When I am gallivanting around, I carry my catheters in a side pouch.  I know this sounds silly but I am afraid of not having them with me in case the big earthquake hits.   The catheters are not easy to dispose of when I am out and about, especially if I am visiting a home, where I know the person emptying the so I carry a zip-lock baggie, which I can just carry out.  I have a “don’t tell” policy; it is easier that way.

All was well with the single use catheters until I took a group of kids to Japan and the catheters I took, for an overnight excursion to Kyoto.  It was so hot there they melted in the heat. I would have had to go to a hospital, to buy what I needed, if I did not take along some sample catheters I saw on a website, called Speedicath.  They are what I use now.

Shield Health Products does not carry Speedicath.  I had to try another company.  My first order was sent with extra product, to bilk the insurance company, I suppose.  When I received my first shipment I was horrified to see that besides my little shoe-box size box of catheters, I was sent two huge boxes of insertion kits. An insertion kit contains sterile gloves, a pad, a container to collect urine, and a mask.  The idea behind the insertion kit is to care for the bedridden person that needs a caregiver to help with the toileting tasks.  These insertion kits were automatically sent along with Speedicath catheters.  They could be called little rockets because they are for women, who are on the go, like me.  I am not needy at all.  The Speedicath catheter can be used by a marathon runner who needs to pee in a porta-potty, really fast, wanting to win the race, without hand-washing; because of their firmness, there is no need to touch the labia. They are also lubricated and so compact. "Why the insertion kit, I tried to comprehend?"  A clown nose, I could use, but not that. No wonder we spend so much on insurance. " I was beyond upset getting the kits, because perhaps they gave me a picture of myself, disabled and needing help to pee. I feel healthy and vital and I am not willing to think of myself in that needy way.   So, I then called the company and they told me that the boxes did not come due to error.  With this new product, Speedicath, insertion kits needed to come along, too.  It was and is hard to comprehend why the company paired the two products up.  I could not use them together.  They are meant for two entirely different toileting needs. “NOT ON MY WATCH”, I thought!  After many phone calls and intent to change companies for my medical supplies, the bosses’ boss told me that I could be the exception to this rule. I still might change companies since I feel like what they did is dishonest. I am still not sure of the rationale behind the decision.  My new medical supply is taking care of me now, though.  I have no complaints.  I have now received several shipments from them and all is well.

I have to do WHAT to pee?

My first urologist was a rather young and very busy urologist.  On my first visit, I sat on a table much like the tables used at the OB GYN office.  I laid back with my feet in stirrups as the doctor inserted a tube into my urethra to empty a huge volume of urine from my bladder. He also took a biopsy of my bladder to rule out bladder cancer.   I was told I needed to come back the next day for self-catheter insertion training. The doctor reminded me again that I had lost my normal urge/feeling to urinate on my own, but that with intermittent catheterization I could have a very healthy normal life.
My first introduction to inserting a catheter was brief.  A nurse assistant came in and had me sit on the edge of a table and helped me just feel for the spot where I was to place the catheter.  I was surprised at how far back my urethra was; it felt like it was right next to the opening of my vaginal opening.  The training on inserting a catheter, which was quick and left me wanting, was over before I really did it myself.  I felt like I needed more time . . . yet I was sent off to start this life of using/needing an aid to pee.  The nurse’s assistant gave me two extra catheters. My first catheter was a fourteen French, a rubber, reusable type.  The nurse did not give me advice about the different types of catheters, which I plan to write about in another post.   She told me of the importance of continuing to self-catheterize. 
 I found out that I needed to get more catheters right away.  I had my prescriptions from the doctor, but learned quickly that you cannot buy catheters in drug stores.  You need to buy them online. The mystery was solved by Cornell Drug Store, who gave me an advertisement for “Shield Products”.  It was a relief to find what I needed, because the next day I was welcoming a guest teacher into my home for ten days.  I was not sure how I would handle a house-guest with my new project. But it all ended up well. With the regular cathing, I felt so much better and had more energy to enjoy my house guest.
When I got home that first night I was just so hungry for information.  The articles I found online about self-catheterization suggested I use a mirror. Ok, I thought, it is worth a try: it did not take me long to realize that one would need to use three hands besides needing more room and perhaps a flashlight between my legs.  Twas impossible to fit all that in the toilet bowl.   It was quite dark, so I finally gave up that approach and just slowly did it.  The urine came out and I peed like a racehorse again.  Now that I look back, I cannot help but wonder how many women use a mirror to insert a tampon for the first time?  I bet those directions were written by a man!

Not too many people would be brave enough to "like" me on Facebook. Neurogenic Bladder is not the most glamerous of disabilities, yet it is real. Some live the life and sometimes feel, perhaps, isolated. The purpose of this blog is to bridge the gap and give a platform to others that have or have friends with a Neurogenic Bladder. We can be the Susan B. Colman foundation for bladder issues. Our ribbons could be yellow.

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