Dealing with Seizure & Vocal Tic Disorder

Everyone who knows me has known about my struggle with Leukodystrophy and Seizures. But for the past three months, I have been dealing with vocal tics. Having both Vocal Tic Disorder plus Seizures have been a challenge for me to deal with. Sometime I will have tic attacks leading into a seizure, which can take a major toll on my body.  

When People Stare

  People have always looked and stared at me because of my seizure helmet, but now when I have my vocal tics even more people look and think there is something wrong with me. Some of them walk away like they are scared to be around me. 

Loud

  Sometimes my vocal tics can be really loud. At times they can be small and quiet as well. I wish I could keep them under control. I have had a total tic meltdown in the middle of Wal-Mart at one time.

Sleepy

After having tics all day most of the time it will leave me feeling tired and sleepy. Sometimes I will have high blood pressure after a major tic attack. The last time this happened I was forced to take five days off from work. 

Adult Diaper Review: Rearz Rebel (ABDL)

Todays review is the Rebel diaper from Rearz Inc.

I just purchased this diaper from ebay and I must say that this one is very unique. This is the first diaper I have seen with a cool skull and bone pattern on it. I have also found other matching apparel that Rearz offers such as adult training pants and adult onesie with the same skull and bone pattern. 

Now about the diaper, it has a cool design on it. Just like all of Rearz products it has all of the same features of the rest of the diers they offer.

Lots of absorbant padding, great leaks guards, and thickness. I must say that I really love this diaper, I love the really cool print. I highley recoment this one to any Little in the age play community.

Causing my own seizures, banging my head against the wall.

   I do have Epilepsy, but sometimes I am so frustated with my life that I will go into a state of depression and hit myself in the head causing even more Seizures. I want to share this because there are so many people out there who deal with Epilepsy with Depression togrether. Even though I have a great support system, I still have times I have a sence of worthlessness. I think one of the things that make me feel this way is because even though I have different treament options such as VNS and medication, I feal slowed down and not being able to keep up with the world around me.

 This is the first time I have talked about this in my blog, simply because of what people might think or say. The only reason I am sharing this now is because I know that know that there are others out there who may have the same problem.

   Other ways that I have cause my own seisures include, dinking with medication, staring at the wall, and watching strobe videos on YouTube. 

  Well I hope my honesty has helped those reading. If you struggle with the same thing please comment and share bellow.

Wetting Myself

There many things that I  lose cotrol of during a seizure. One thing that happens to me a lot is I end up wetting myself, I do of course wear adult diapers to aviod embarrassment. I have had so many problems with seizures that I have become regularly incontinent, that means I wet myself even without having a seizure.

With my incontinence it hase become rather expensive. I use about 2 cases of 80 diapers a month. That is not includig wipes creams and pouders. The only time I save mony is when I find diapers at thrift stores.


Wearing in public can sometimes be a  problem. Carrying an extra bag for my diapers, or wearing a diaper in the airport. Most of the time it is hard to hide the fact that I am wearing, or wet. Changing a wet diaper is a big hassle in a public restroom. Most of the time I have to use the large handcap stall to have enough room to change.

It is really hard to tell the hospital that I wear a diaper. They see these types of things all the time, but it is still hard for me to tell them that I need a change, or that I'm wet. 

I do have a lot of challenges being incontinent on a daily basis. I just wanted to write and share my own personal experience

Deaper Review: FAB SENSE CityPrint

Hello, today I want to ealk with you about a new adult diaper that recently got in the mail. It is the City Print Brief by Fab Sense. After wearing these I would have to say that these are very comfortable. The padding is very thick and absorbant. I can wear these at least 12 - 14 hour with no leaks.


Here are  some of the key features of this diaper.

Super Absorbent Cotton Core

Plastic Backed Surface

Refastenable Tapes for extended wear

Double Leg Cuff Design

Elastic Waistband

Colourful and fun city print

3,000 ml absorbency

All Cases are shipped in plain discreet boxes

Sizes include Medium & Large

This is a very fun diaper to wear. The price is very reasonable, for the confort and quality.

Why Some Epileptics (ABDL) Age Play

   Some people don't why some of us like to age play. For a lot of people it's never for the same reason. Some ABDL's do it for stress relief, or some just miss that sense of reliving there childhood.
   

There is another group of people I want to talk about to today, something I don't think people know exists. People like myself, a person with epilepsy. Someone reading this may say this is ridiculous, but it's not a crazy as you may think.
I have many reasons that I age play, one of these reasons is my struggles with urinary incontinence.
Because of this I have to wear adult diapers, but this is not something to easily accept. To help myself accept this I have started to age play with baby toys, adult baby clothing, and ABDL clothing. With this new change in my life I have been a calmer person, have had less seizures, and I have felt more confident in my need for adult diapers.
    There are sopme people who may be angry or upset with this article. Some who my say, I have epilepsy and I don't wear diapers and act like a baby. To those people I would like to say, all of us who deal with this are different. Also we all have different things going on with our health and how we choose to deal with our problems is different as well.

Epilepsy & Wearing Diapers

One question that a lot of people ask. Is it normal for adults with epilepsy to wear diapers. The answer is that it is a matter of preference if the person with epileptic incontinance feels it is necessary for them to wear an adult diaper. Some people are OK with wearing them, while others are turned off by the idea.
     When I started having problems with incontinence it was a very hard transition because in my mind I thaught only babies and old people wear them. One day I had an acident after having a seizure in public, I wet myself and it was an embaressing moment in my life. All I knew is that I never wanted that to ever happen again. In my opinion, it is better to wear an adult diaper then it is to have an embaressing acident in public.

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My Bucket List

One thing that I have been thinking about as my life goes on is things I want to do bwfore I get to old, or before my condition gets to bad. I have been making a list of things goals in lfe that I want to accomplish in my life as well as places that I would like to go. Life is to short and we should do everythingf we can to live our dreams no matter how old or how old we are, and no matter what obstacles are put in our way. 

I have my own list that I want to share, I will be working as hard as I can to check some of these of soon.

• 1 Go to Wrestlemania
• 2 Visit another country
• 3 Make a film about Epilepsy
• 4 Earn a YouTube Silver and Gold Play Button
• 5 Take my family on cool vacations
• 6 Help young people, who strugle with depression, and substance abuse.
• 7 Go to VidCon
• 8 Have a meet up to meet some of my subscribers.
• 9 Visit NYC and see the 9/11 memorial

   There are probably a bunch of other things I can add to my list that I haven't thaught of yet. My piont is this, do as munch as you can while your here, because if you sit around, life might just pass you bye.

Diaper Review: Rearz Spoiled

This is one of my all time favorite diapers thus far. This diaper is a play diaper for ABDL, and for those who are into age play. It is a very comfortable fit, for the money you spend on it. The diaper is very thick, and holds a lot, it also does not leak. The longest I have worn this diaper is about 10 hours. I have had no problems keeping mioster away from my skin I was still very dry after use of this diaper.

Features

1. Brand name 4th Generation SAP gel:

• This crazy gel has a 4x faster acquisition rate
• Better retaining power - even under pressure!
• Higher capacity
• This ingenious polymer also swells more than the cheap gel that ALL our competition uses 
• Why don't ANY other manufacturers use this gel?  It costs 3x more money so they can have a higher profit margin.  We don't care about anything other than the BEST QUALITY materials available.

2. Boasting a 4900ml capacity (yes that is 169oz/20 cups)

3. Brand name tapes

4. Soft and generous core with USA grade A Fluff to prevent shifting when wet

5. Tall standing leg guards

6. Elastic waistbands front and pack

7. Adorable print

8. Reinforced frontal tape that allows refastening

9. Thick Vintage style PE backing that has not been seen in at least 20 years

Sizing

As a genaral note these run larger than "standard" sizing, closer to the sizing of Abena.

Size 9 (Medium): fits 32" to 42" with 3" of overlap on each side

Size 10 (Large): fits to 52" with 3" of overlap on each side

If you think you might want to try this diaper visit the link Here

Hard Shell Seizure Helmet

For a bigger part of mylife I've had to wear a seizure helmet. Since 2009 I have baught about five different helmets including the most recent one that I have now. Most of the ones before were foam rubber or leather. The most recent one is a hard shell helmet with a foam rubber liner on the inside with hard shell ear covers. 

The reason for the hard shell up grade was because aboutt a month a go I was shopping a Wal-Mart when all of the sudden I passed out on the floor. The next thing I knew was that I was waking up with a manager telling me that I had a seizure. He told me that I had fallen pretty hard, and man did I feel it the next couple of days.

  The next couple of weeks I was to scared to go anywhere by myself . This is when I decided to try and upgrade to a hard shell helmet. My reasoning was that this would be more durable, and it would make me feel more safe.

  I will begin to tell you that seizure helmets are not cheap. This particular helmet cost me about $470 thats including the shipping cost. Being someone who works in fast food, this was not easy to come up with the money. 

  On the news I saw  stories of how some people were able to get help using croudfunding services.
One particularly was GoFundMe, so thats what I did I set up a page and in about a month I was able to get my helmet.

  I am so thankful that a lot of my friends and family could help me raise the money for my helmet. Now my brain feels a lot safer because of it.

Need For A Hard Shell Seizure Helmet

    Most of you who come here and read my blog  know that I have seizures. The cost of me trying to keep myself healthy and safe can be rather expensive. Well just last week I passed out at Walmart and had a seizure I woke up later and the manager was standing over me and told me not to move and that I had a seizure. Thank God I had my foam rubber helmet on. I did however drift in and out of consciousness. The next day I had extreme headaches. 

   Now that I'm 40 I find that I have a need to be safer and protect myself fom injury. I have been wanting for some time to have a hard shell helmet, I believe that it is much more durable and will protect my head better than a foam rubber helmmet. I have beenn looking and pricing them out and the one I need with all the options I want the cost is around $470.00 and that includes shipping. I am in desperate need to be safe, I have set up a GoFundMe page for anyone who would like to help me. If I can I will try to keep everyone updated on how much money I have raised.

Special Needs @ Allegro Medical

Being an epileptic there are things I need in the form of medical supplies. The one place I trust for theses needs is Allegro Medical. They have the best prices on everything from walkers to shower safty seats, to adult diapers.  Anything that a person with any type of dissability might need. The difference between Allegro and other suppliers is that Allegro's prices have a lower markdown below normal retail (about 30-60%). So you are garenteed to pay less than any other Medical Supplier online. Allegro Medical is where I purchase all my adult diapers, adult bibs, and all my other medical supply needs. I have not found any other better prices than I have at Allegro Medical.

Adult Diaper Review: Prevail Perfit Cloth Backed

I just got this brief today and I must say it is the most comfortable diaper I have tried yet. I wore it for an entire night and had no problems with it moving or coming undone like most diapers I have tried. The diaper is cloth backed and not plastic like some of the other Prevail products I have used. here is some of the feature of this product.

1. Easy - Lock Fastener (ELF) Reataching fasteners securely grip and hold without being sticky.
2. Maximized breathable zones.
3. Targeted aquisition zone with blue stay-dry strip.
4. Fecal containment zone.
5. Odor Guard Protection helps prevent odors before they even start.

I highly recomend this product. I like this diaper very much.

Visit Med Street on Ebay for all your incontinence needs

Adult Diapering (Comfort vs Value)

My monthly diaper stash

When it comes to adult diapers everyone is looking for something different. For some people it's comfort that is the most important and for others it's price and value, it's almost impossible to get both.
No matter what your looking for adult diapers are expensive even if you save a buck or two. There are other factors to concider, how many diapers do you use per day. For me I go thru about 6-8 diapers a day. At first comfort used to be imortant to me but now that I've been in diapers for some time now value and price have been more important. I get my diapers from multipal sources solme from Ebay, Some from discount diaper sites, but the best deals I've found is from Goodwill Stores on 50% off days. Now when I go to Goodwill a pack of diapers is $6.00 but on 50% off  day you get them for $3.00 a pack. Each pack has 18 diapers  that means if you buy 4 packs you just baught a case of 72 diapers for $12.00 and normaly a case of 72 costs about $56.95 online. Now I will confess that if I have extra money I will pay for comfort, my diaper of choice for comfort is Tena Ultra I pay $68.00 for a case of 80 diapers and I buy two cases normaly. So now you can see there is a big differance between confort and value but whatever way you want it it's still expensive.

Digestive Probems

Today I want to talk about a problem that most people who take seizure meds have, and that is digestive problems. Some times we puke them up, or they end up in the tiolet after we use the bathroom. The one question I asked is should I retake my medication since it had not fully digested. The Answer by a Dr. Young on a health site was this:  In general in you throw up more than 15-20 minutes after taking your meds, there's no need to redose. Further to this point, unless you actually see pills in the vomit, I wouldn't suggest redosing, because there's a good chance the medication has been absorbed already. To see my source go HERE

Product Review: Attends Breathable Briefs

There is a new product that I tried and here is the review. I this is a great diaper for those with heavy incotenance. This adult brief is great because it does not feal like other briefs that cause you to swet a chafe between the legs. This brief is breathable because it is made of soft material instead of unconfortable pastic.

Features include.

Contains additional super absorbent polymer and cellulose fibers for maximum absorbency

Triple-tier moisture locking system delivers superior performance and leakage protection while promoting skin wellness and managing odor

I love this product because it is super obsorbant 

and it helps you last through the night and helps 

you stay dry all night long.

I highly recomend this product to anyone needing 

incontent products.

This is a great value for a great product.

Leukodystrophy: waiting for death.

As the white matter slowly deteriorates from the brain, things can be quite unbearable  for those waiting to die. Death for people with Leukodystophy can be anywhere between 5-20 or even 30 years depending on the age of the person when diagnosed. My personal experience with this disease has been a hard road to survive. Even though I am still able to work a part time job I still struggle to make it through the day. When I first started having problems I could push myself through the day with the help of medication to control the epileptic part of this disease. In July of 2012 I had a procedure doe to better improve my quality of life VNS (Vagus Nerve Stimulation).

 This is like a pacemaker for the brain that sends electrical stimulation to help control seizures. Even though my seizures have been dramatically reduced this still does not stop the progression of this disease. Now that I am almost 40 I find that I have days that I can't move, talk, walk or even see clearly. Another thing I have started to deal with is strange mood swings and behaviors. Some if not all of these things are a part of the  progression of Leukodystrophy. One thing I know is that I cherish the good days I have but also know that things could go bad in a matter of seconds where I will lose total control of my body and have to have a care taker to help me along while I painfully wait to die. Anything can happen but I try to get around the hurtles put in front of me even though tomorrow could be my last day.

(Electric Magnetic Feilds) EMF Sensitivity on the Brain

(Eletctric Magnetic Feilds) EMF is everywhere from cell towers to cell phones, even your computer and wireless routers, basically anything powered by a large amount of electricity. High EMF can have a huge and dangerous impact on the brain especially someone like myself, simply because I have epilepsy. I have really noticed EMF sensitivity at my workplace because there is a lot of computer monitors and electrical equipment for preparing the food.

This is especially bothersome with my VNS (vangus nerve stimulator) when I go to work it feels like I'm constantly using the VNS magnet over and over again. I will say that high EMF sensitivity has never been a factor or problem for me until I had the VNS implant. Even for people without epilepsy  EMF sensitivity can cause a variety of other problems, Headaches, Migraines, Irritability, behavior disorders, Insomnia, ADHD, Alzheimers Parkinson's Stroke, Seizures, Nerve and/or muscle pain Fibromyalgia, Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME),  Multiple Sclerosis, Tumors, cancer, Heart attacks, and cardiac arrhythmias.

Feeling Burned Out

Almost every day I am feeling tired worn out and burned out. Sometimes I feel like I might start having seizures or have a relapse. I have been trying to get somewhere back to a normal state. Maybe I have been pushing myself to hard, I'm not really sure. Between working, meds, and VNS stimulation, I find myself out of order. One thing I do know is that it's taken me this long to get this far, so there is no turning back. I just have to keep moving forward, and I will eventualy get there. If things don't work out at least I tryed.

Exorcise and Epilepsy

Some people with epilepsy avoid exercise because they are afraid they will have a seizure during the activity. In fact, it is extremely rare for a person to have a seizure while exercising. Rather than triggering seizures, their epilepsy may improve with exercise. Although the reasons are unclear, studies demonstrate that abnormalities on EEG (a test that measures electrical activity of the brain) decrease during exercise. Overall fitness and a feeling of well being have been shown to help reduce seizure frequency. People feel better and may improve their seizure control with regular exercise. One report suggests that exercise improves self-esteem and social integration, regardless of seizure control. It has also been shown that regular exercise reduces the number of overall health complaints, such as muscle pains, sleep problems, depression and fatigue. Most sports activities are acceptable as long as people avoid overexertion, dehydration and hypoglycaemia (low blood sugar). If seizures occur, it is most likely after the exercise (15 minutes to three hours after exercise).