testing testing 1. 2….. testing 1 2 Now I feel like dancing lol
You’re getting Botox Where?!?!?!
IN MY BLADDER
Who? What? WHERE?!?!?….. In your bladder?!?!?
(Jokes about a bad connection or needing glasses)
Seriously though, in my bladder (although some other areas could maybe use it to)
I have neurogenic bladder which is described as:
Neurogenic bladder is bladder dysfunction (flaccid or spastic) caused by neurologic damage. Symptoms can include overflow incontinence, frequency, urgency, urge incontinence, and retention. Risk of serious complications (eg, recurrent infection, vesicoureteral reflux, autonomic dysreflexia) is high.
FOR ME, personally, this means when I have to go I have to go. Get the hell out of my way it is coming NOW!!! Most times I can tell that I have to urinate before it happens, but not always, and just because my brain sometimes gets the message that I have to pee, it doesn’t mean it lets me know that I have to go more than 10 seconds before it starts to flow…… smh… yeah yeah “it sucks to be me” I know.
Just to keep it interesting though, my body seems to have forgotten HOW to pee. So my brain gets the message (most times) “Hey you should probably RUN”, and I attempt to move as quickly as possible toward the nearest “facility”. I get there, and then NOTHING! Not even a drop sometimes!….ARE YOU FRICKING KIDDING ME?!?!? How do you live with that?
Learning how to Self-catheterize
For starters, I self- cath. I have included this link not only to show a “carton image” of how the whole thing is done, but because it cracks me up that even a medical site doesn’t really “get it”. One hand to spread your labia, your second hand to insert the catheter, and your THIRD hand to hold a mirror?!?!?…lol yeah good luck with that. Either way I have figured it out, and it helps.
I try to pee on a “schedule”, and before I leave the house, or before I have sex, or go to the store and and and. I’ve also learned which drinks aggravate my urgency (surprisingly water is worse than coffee) but more on this at another time.
Percutaneous Tibial Nerve Stimuation (PTNS)
I’m not even going to try to explain how this works, but it does help with the urgency. Here is a link that does explain the science behind it, if you are interested. I’ve also copied a portion of the site here:
Percutaneous Tibial Nerve Stimuation (PTNS) is a low-risk, non-surgical treatment. PTNS works by indirectly providing electrical stimulation to the nerves responsible for bladder and pelvic floor function. During PTNS treatment, the patient’s foot is comfortably elevated and supported. Also during treatment, a slim needle electrode is placed near the nerve at the ankle known as the tibial nerve. A device known as the Urgent PC Stimulator is connected to the electrode and sends mild electrical pulses to the tibial nerve. These impulses travel to the sacral nerve plexus, the group of nerves at the base of the spine responsible for bladder function.
By stimulating these nerves through gentle electrical impulses (called neuromodulation), bladder activity can be changed. Because this change happens gradually, patients receive a series of 12-weekly, 30-minute treatments. After the 12 treatments, when the patient’s response to therapy is assessed, occasional treatments may be needed to sustain symptom improvement.
The last time, I went for my “maintenance treatment”, (which is every 4 weeks) the nurse let me take a short video showing how the procedure is done. I have posted it to my Youtube channel if you want to see.
Botox Injections for Urinary Incontinence
Okay FINALLY to the point of this post. I am having surgery next week for Botox injections in my bladder. Yes fricking surgery….AGAIN!!! The Botox website SAYS that the procedure can be done in the office, and it can, but for me it has to be surgery. 😦 I can’t really explain why. I used to drive to Chicago (2 hours away) to have the procedure done at the University of Chicago, and then drive (albeit uncomfortably) the 2 hours home, but I had a “falling out” with one of the doctors there about the frequency I felt I needed it and the frequency she was willing to perform the procedure so I have been having it done locally for the last 2 years.
Why does it have to be surgery?
The doctor who performs the procedure locally does not have the equipment or permission or something to do it in his office, so I have to go to the hospital. To use the operating room at the hospital, they have to call it surgery? I have to go through the whole sedation game and get a driver because of that. I have asked them not to sedate me when I go, hell they can even skip the numbing part if they have to, just do it and be done, but that hasn’t worked so far :(. So next week, I am having surgery, if I can find a ride. ( weather permitting) What a lousy day!
Surgery will be in the middle of the day. They will require me to get there with only one cup of coffee in my body. (They finally agreed to this after dealing with me with NO COFFEE, it wasn’t pretty…. people got hurt ) The check in, vital taking, meeting with the anesthesiologist, (countless nurses), and some doctors too will take approximately 4 hours, and then I will come home and sleep….smh…what a waste of a day. Oh well, it is what it is, and for me the Botox injections have been the most helpful treatment for my bladder issues.
If you want more information about the procedure ( how it’s done, what bladder conditions that it treats etc) here is their website. If you have any questions about Botox, or PTNS, self cathing or any other bladder treatments, feel free to send me a message. Again, I am NOT a doctor, but I have a lot of experience with testing and treatments. ( I was part of the FDA drug trial for Botox too). I have lots of bladder stories, including my diagnosis which I will write about later.
If you are having symptoms of bladder urgency or incontinence TALK TO YOUR doctor. I know it’s not a “fun” topic, but there are many things you can try to not have to suffer in silence.
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.
Have 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 
and 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: 
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
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)…… 
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.
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)
Help! I don’t know how to be a “GIRL”
Ok, Ok, you all know that I have the X chromosomes… (there are two right?)
I was born a female. I have not had any surgeries or anything like that to change that fact, nor do I want to. (well except for this one time, when I had a hysterectomy... medically necessary NOT elective) But I am struggling with how a “girl” is supposed to look, act, dress etc. You see, I’ve never actually TRIED to “fit in”, BUT now…
Thing ONE is getting Married in March!!!
I am THE MOTHER OF THE BRIDE…. who knew that was such a thing? I mean I know I’m her mother, but I apparently don’t just get to sit there and watch my kiddo get married, I actually have to SHOW UP, (like dress up and say stuff and…..whoa)….
When she was a little girl and it was just the two of us, I envisioned being the one to walk her down the aisle, and that’s as far as it ever went. I never thought about “giving her away” or her father walking her down the aisle. I am glad that Einstein is doing that part, since I don’t think I could say the words when asked, “who gives this woman?”
DRESSing up to SHOW UP
I guess it makes sense that the first part for me then is choosing a Dress, since I was informed that I can NOT wear sweats and a Tshirt. I was also TOLD that I could not wear a Tuxedo as I have in 2 previous weddings. DON’T JUDGE!!! (I had “stereotypical male roles” as an Usher in one, and a Best Man in the other, so it was fitting, AND cheaper.) 😛
Best Man Speech @ Brian’s Wedding
“Contract” that I could wear a tux
As an Usher with Thing 1 and Thing 2
Picking out a mother of the Bride Dress
Thing 1 and her bridesmaids told me I was not allowed to wear a tent, or an old matronly type dress either, because I am not OLD….. well THAT got my attention….DO TELL!!!! So I agreed to wear a dress if they helped me pick one. We went to David’s Bridal and the fitting person asked me what kind of a dress I would like….um….well…. um… I repeated the bridesmaids directives and added a few of my own:
- The dress could NOT be matronly
- It had to be the Color Plum (to compliment the bridal party)
- The dress had to be long so I could “hide my bag of pee” if I needed it that day (and to hide my tennis shoes, if I could get away with wearing those)
- I get hot very easily, so no long sleeves
The “fitter person” took my measurements, suggested a size, and the bridesmaids all took off running to find the “perfect dress”. SO Many dresses…..smh I was exhausted by the time I had tried them all on, so I told them to vote and pick one. They did. (and I spent a boat load of money on a dress)
Time for shoes!
My kiddo, told me I could wear my tennis shoes under my dress because they are custom fit with orthotics to keep me upright…so for the most part that is covered. ( I do own a nice pair of black flats for pictures so that part is covered too)…. I think I’m good to go…..but
What about your Hair and Make up?
Yes I have hair, no I don’t own makeup. Next?……(apparently it is not that simple)
Hiring someone to do your hair and makeup for a wedding
My daughter presented me with 3 options for having my hair and make- up done. I am pretty sure she doesn’t really care how I show up as long as I show up, but she wanted me to feel included. She told me there are 3 packages available for make up (hair is included)
- Regular make up
- Airbrush makeup
- “24 hour” makeup.
I honestly don’t know what any of that means and all would be a change for me, but ok here goes. So, I called the place that she hired to do everyone’s hair and make up and asked them if they have something like SHELLAC that they could apply over whatever they decide to do to my face….they laughed… I WAS SERIOUS!!!
I expect to bawl like a baby, not bad tears, but happy ones, but lots of tears nonetheless. And I am a horrible crier…
I look NOTHING like Jennifer Love Hewitt in Ghost Whisper who looks more beautiful with each tear she sheds.
So please just make it water/tear proof.
I even enlisted Tiara from DGGYST to ask for make up tips. (she really is kind, even in real life…not just “celebrity mode”) and she didn’t laugh at me when I asked for help.
Choosing Bridal Jewelry
Now I am stuck on Jewelry/accessories. How the hell do you chose those? Do they have to be the color of the dress, or do you pick something for the style of the dress? Since I don’t really own any jewelry, I suppose I should buy something that I can wear again. (like maybe when thing 2 gets married)
I do have pierced ears, but only because the holes never closed from when I was 12 and pierced my own ears to shock my parents. So I was thinking maybe matching earrings and a necklace?…I am really stuck though.
I am afraid to ask anyone I know in real life to go shopping with me, for fear that they will try to talk me into a full wardrobe makeover….and then our friendship would have to end….and well let’s just say it’s better that I don’t ask them.
So here I am asking for help. Any advice on how to Choose jewelry? I would like to draw attention AWAY from my port. (I know I am very self critical, I am working on that.) I am excited about the Wedding, and I am getting excited about dressing up, it’s just been so long since I have, that I have forgotten “how to be a girl”.
MS Graceful...NOT! 