bathroom · Darkness · Depression · FUCK · health · HORROR · medical · multiple sclerosis · nightmares · primary progressive MS · Ramblings · RANDOM · sadness

 What living with MS feels like..

OMG…this says it all! In tears reading this. WOW! Someone does understand! Although I am not able to walk anymore, it was exactly like that when I was.

What living with MS feels like..:

When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…

1- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

2- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

3- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

4- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

 5- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

6- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

7- Tingling: Stick your finger in an electrical socket – preferably wet.

8- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

9- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

10- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

11- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

12- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

13- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzzzzzzzzzzzz

 14- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

 15- Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

 16- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

17- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.

18- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

19- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

20- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

21- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appear.

22- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

23- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

24- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

25- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

26- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

27- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

28- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

29- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

30- Swallowing: Try swallowing the hottest chili pepper you can find.

31- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms – welcome to our world.

Then Finally…

32- After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

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Peace!!

bathroom · family · HELL · joy · love · Ramblings · sarcasm · shower · Wheelchair

My Trip, err I’m a trip? I do trip…

Before we left I called the Courtyard Marriot to make sure my roll in shower with bench room was still reserved for me. I was told yes. Well woo hoo… maybe not. Ten minutes later the hotel’s manager called and said their room was a roll in but had no bench. :-O But… the Residence Inn Marriott had one and would be reserved for me. Well cool beans..

We hit the road for Carlsbad late and finally got to the hotel around 10:30 pm. Check in was nice and easy, the rest… not so much. The first place I looked when we got in the room was the bathroom. Yup, roll in shower, Nope no bench and no places to put shower essentials. Ya know a shelf! Roger went to get some ice from the refrigerator and it seemed clogged. When he opened the ice maker there were two Smirnoff Ice drinks, one broken from freezing. He had to take out the ice maker and empty it to make sure no glass was in the tray/box. NICE! Then in one of the fridge drawers the previous customers also left more drinks. Does no one clean the fridge? By now I’m a wee bit irritated. I ring down to the front desk and ask about the shower. They tell me they have a portable folding shower bench they will bring to me. Really, I could bring my own. The attached benches are much more sturdy and safer. I politely declined their offer. WTF!! You would think if you ask for a roll in shower with bench and they say they have one, that’s what you would/should get. The worst part for me, is when these things happen it’s so in my face that I’m crippled in a wheel-chariot! Guess if your crippled, hotel stays are not for you…

BUT, as always, Hell hotel would not ruin my trip.

The next day we headed out to my uncle’s dentist’s office. I was prepared for bad news per the dentist from my area. Guess what, not nearly as bad as the ‘liar’ said. I had a bit of decay [2 small cavity areas] which Greg filled. Then one, not two root canals were needed. We made the appt. for the nest day. Greg also filed down my two top front teeth as they always jetted out a bit on the bottom. Took two minutes and now my front teeth look so cool! Next I had the best teeth cleaning ever. We headed back to the parents house and my sister Laura and her new adorable puppy [Finley] came over. It was a nice night with great food!

The next morning we got up and Roger washed my hair in the sink and I did a hooker bath. Fun… We then took off to the Endodontist’s office for my root canal. As root canals go, it was fabulous. Not a smidge of pain and fabulous people there. It was great. Then the parents took us to lunch…I had soup. lol Next was the moment I’ve been waiting for for 3 weeks; off to see my nephew Max!! YIPPEE.

Baby Max

This made up for the crappy hotel that we will never occupy again.

Max is just a love and the cutest baby ever. Instant love!! My brother Ed and his beautiful wife Kelly did a good job! If fairy tales are true this family IS The Fairy Tale!

All in all the trip was fabulous. Yes the hotel sucked, but I always make it through. The good, however, outweighed the bad; my teeth rock now and I got to hold my and meet my Nephew Max.

Have a fabulous Sunday peeps!

anger · bathroom · Depression · FUCK · HELL · multiple sclerosis · Ramblings · RANDOM · sarcasm

Hotel HELL

In my head I do not ‘see’ myself as crippled. I just see me. Unfortunately there are little issues that pop up to remind me.

Next week we are heading to Carlsbad/San Diego so I can go see my Uncle, the dentist. Finally going to find out what’s happening with my painful mouth. We usually stay with my parents in Carlsbad at their home, but it can be rough for me with no ‘crippled’ access. Roger and I decided we would stay in a hotel nearby with the roll in showers and accessible rooms. We had stayed at the Hampton Inn Carlsbad once before and it was perfect. Now, here’s where the fun starts. I called to make a reservation making sure I could get a roll-in shower room. They said they were booked for those rooms on those dates but had an ADA bathtub room. I explained that will not work for me and he said to try the hotel next door, the Homewood Suites by Hilton. Okay, cool. I thanked him and called. The Homewood Suites had no availability for these rooms either so he said he would call the Hilton Garden Inn Carlsbad. By now I’m feeling a bit nervous and stressed and crippled. All this to get a hotel room? I figured 3rd times the charm, right? Wrong!

The Hilton Garden Inn had roll-in shower available rooms. Woot woot! Not so much. Now we could pay for and ‘reserve’ this room…but…they can not guarantee we will get the roll-in room. Ummmmm, what? I’m paying for the reservation [reserving] the roll-in room, but you cannot guarantee it. WTF! Basically, we can pay for it, but once we get there is may not be available and we will get an ADA bathtub room. Now I’m not only confused but getting angry and tearing up. I ask the guy why the other hotel has the rooms and also has them reserved for the people. [why I couldn’t get one there] He’s sorry but there will be no guarantees for the roll-in room. I explain that if we pay for it and it is not available that I will need to cancel and get my money back so I CAN find a hotel with the room I need. He explains that no money will be refunded as it’s a two day cancellation policy. I then explained that the ADA will not be happy to hear about this.

After a few no so nice, yet adult like comments, I hung up. Wow, I can’t even get a hotel room… I really am crippled! Fuuuuuuuuuuuuuck!

I call my parents and burst into tears explaining what happened. After a few minutes, I calmed down, [thank you Cheryl] regained my composure, and realized I can tough it out for two days in their house. It’s just the bathrooms that cause me stress.

Now that I was composed, I noticed there was a Marriott nearby as well. I figured, maybe the 4th time is the charm and fuck Hilton! 😛

Dialing the number, crossing everything, I call The Courtyard By Marriott Carlsbad. [oh please, oh please] My first question to the sweet voice on the other end was, “Do you have roll-in shower rooms?” She says yes. My second question was, “If we reserve one, will we be sure to get one?” She says yes, they will reserve it and put a block on that room for me!!! HALLELUJAH…HALLELUJAH Really, I heard music! So this  lovely girl made our reservations, blocked the room, and instantly sent me a confirmation.

Marriott - a crippled persons dream! :p

My stress was lifted, my spoons replenished. I will NEVER deal with Hilton again. They may be and have accessible rooms, but they are NOT cripple friendly. Marriott, you are my new love, Thank You!!

Love and light peeps!

bathroom · hope · joy · mindless-thoughts · multiple sclerosis · Ramblings · RANDOM

My Crippled Access bathroom…

happy roll...

My bathroom is now useable and the tile is all done and my shower is ready for my crippled ass!! We still have to paint, and replace the toilet. [adding a toilevator for extra height] Just basic finishing touches. I am getting frames for around the toilet and shower chair for extra security and to make it easier for me to get up off the seats. The commode is going buh-bye!! Maybe we will have a ceremonial bonfire! Until the seat frames [rails] come I still need help showering. Luckily Roger ‘likes’ this chore! lol The perv! 😛

Now that we have this out of the way, it is time to move on to the next chapter of fixing up my home 101. lol It’s de-clutter time and make my home more cripple friendly. Mainly, I want to get rid of the junk, and make my home my castle. 😉 We are going to paint the interior, exterior, hopefully tile the rest of the main walkways and into the TV room, weatherstrip doors, fix dents in walls [no idea how those got there!] It’s not all going to happen overnight, but it will happen. Sadly, patience is not a virtue I have, but I am learning…

xx, Tracy...

 

anger · bathroom · Fear · health · health insurance · healthcare · Ramblings · RANDOM

Money, Money, Money…

They say money can’t buy you love, happiness, etc. I beg to differ, but not in the way most would think.

I need, I want...

In my situation money would buy ‘comfort’. Money will not cure me, but it would make my life and my families much easier. You see the stars with MS and other chronic illness’. Montel has his own cook, nutritionist, physical therapist, child-care. Trust me, if I had that it would make life much easier and less stressful. So in this case, money would buy ‘comfort’! Most of he people on these shows with chronic illness depict the success stories. The ones who run the marathons etc. Their MS is the less severe form, and being in remission is a great thing and I am happy for them. But, where are the stories of the those with the severe forms, who have families and live on modest incomes with no extras like a cook, a nutritionist. You get the idea.

There are treatments out there that insurance will not cover, so in those cases money would buy me better health care.

Not sure where this is coming from tonight… maybe because I tried to take a shower in my partly done shower and realized it is not going to make that much of a difference. Roger got the seat and a couple of bars installed, which help. But I have to be careful as it is not all grouted and we have to be sure the water does not get all over the place. The shower itself was fabulous the aftermath, not so much. I am coming to the realization that even bars and a higher chair do not help me get up. My legs are near useless and I sat there and cried, why??? This was not supposed to be my life. Why not strike those who commit heinous crimes and those who do to want to be a giving part of society. WHY? And yes it is my right to ask why. There is no reason for this. I did nothing to deserve this, as many of my friends did nothing to deserve their illness’. So why?

I’m not naive and I know there is no answer for this question.

I sit here, again, wondering if I will be able to get in to my bed tonight. Will I be able to get up easier in the morning? I know these answers will not be ones I want to hear. I hate feeling this way. I am no quitter nor am I a whiner. But as of late I read people complaining about their colds and allergies and runny noses and want to scream at them, “Your piss ant issue will go away, mine wont!! So shut the fuck up and get over it!!” And that is not me either. I hate being this bitter, this angry. I think from all the times I hold it in, it is finally too much to take.

I’m lost and am slipping away from me more and more and I’m scared…

As Always…

xx, Tracy...
anger · bathroom · Darkness · Depression · HELL · multiple sclerosis · Pain · Ramblings · RANDOM · sadness · sarcasm

Fuuuuuuuuck

I know, great title for my blog. Haven’t blogged in a bit and here it is, in your face…fuuuuuuuuuck!!

You may ask yourself, ‘Why?’ I’ll tell you why. It’s now after 11pm and I wanted to go to sleep. You know, lie down, get comfy, sleep. NOT! After 4 minutes of trying to lie down I gave up. I cannot seem to get my legs up on the bed. I get one up the other slides off. I pull on my jammie pants leg and my hand cannot hold on or lift my leg. Now I could scream for someone to help me, but they are all asleep and have to get up early for work and school. Hubby is on the pullout sofa as he snores so bad he wakes me up all night. So, I’m sitting here with tears rolling gently down my face as sleep is not coming yet. Even if I get my legs into the bed it take me forever to get into a position comfortable for sleep. Once I lie down I have to pull each leg up in a bent position or my lower back hurts. As it is, if I do not sit in the right spot before I try all of this, I may end up too high or too low on the bed. I am not able to ‘scooch’ into a comfy position. I get one shot. I guess I’m lucky, as once I do finally get comfortable I’m ready for sleep, as doing this easy task takes all of my spoons. Just getting into bed is a fucking chore and it pisses me off. It’s not fucking fair!!!!!! And don’t tell me it could be worse!! It’s going to get worse so shut your mouth. And don’t tell me it could be worse, it could be cancer… this IS my Cancer!!! It has and will continue to take my life from me. Just in a slower mode.

February 8th, marks the 2007 death of my MS partner in crime, Tina Richardson. Her progressive MS killed her. She got caught between a heavy power chair and bathtub and slowly suffocated to death, alone and I’m sure frightened. She could not move and could not scream. So, do not tell me no one dies from MS. They do every fucking day. If she had not had MS she would not have been in that position. I know others that have passed away due to pneumonia from being immobile and the MS basically killed their lungs. Tina was only 40 years old and my friend and I miss her every day. So fuck you and your,’it could be worse!’

As of this moment, it’s only going to get worse for me and I’m petrified. I am in a wheelchair 24/7. I am tired, fatigued 24/7. I run on fumes every day and try to be funny and crack jokes. I hide behind a smile and most days I wish it would all just end. I have pain 24/7, incontinent at 46 years young. Migraines, weight gain, unable to do the simplest tasks. The next time you feel the need to bitch about running errands, doing the dishes… be glad you can run errands and have the strength to do the dishes. I would trade you in a hot second to be able to do all those annoying tiresome chores. The next time you take a shower, thank your God you can. Even taking a shower is a chore for me and after I usually need to sleep as there goes some more spoons.

I try to keep the pain to myself, me feelings, my MS. This is my blog, and you can read or not. Tonight, all the lil things going on in my life, and then the tip of the iceberg,  not being able to just get into bed, hit me all at once and hard. Seven months, still no bathroom finished, haven’t even seen them in over 2 months. Promises to here then no show, no call. Losing more leg movement and the list goes on… depression has hit and it has hit me hard. Will I make it through this one… Hell yes! I always do. I’ll find my inner strength and pull my boot straps back up and move on. But, now and then I need to let go, and let the idiots know to watch what they say. God help them if they ever had to deal with a real illness… my comment to them will be, “Hey asshole, it could be worse, you could have MS!!!”

 

xx, Tracy...