FUCK · Health · HELL · Love · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

MS and the Losses We Suffer

Facebook has brought me together with some fabulous people who battle the MonSter with me. Heather Leffel is an amazing young woman who shares so much of herself and of the struggles we, fighting MS, go through. Recently she did a video on “MS and the Losses We Suffer“. Together, with Kate Milliken, a video was compiled of excerpts from people suffering from MS [all types] and the losses they have experienced.

I am honored to be a part of this amazing project! I believe the Universe sends us messages from time to time, when we truly need them. I have been going through a very rough time as of late. I was losing hope… Then, BAM, the finished video showed up on my FB feed. As I watched it through my tears, I felt the hope returning to my soul. I was so inspired by those who shared their hearts.

So, without further ado…

 

Anger · Fear · FUCK · Health · Hope · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM

Surgery – not so much…Graphic

Surgery, June 10, 2014

****WARNING graphic photos below****

I did not come out of the dark until June 26. Sixteen days of what they call ICU Psychosis. Sixteen days lost to me. To everyone around me I was awake. For me, I was in a dream, not knowing where I was.

Backtrack… The surgery was to help me get some semblance of life back. To be able to go out more and to help those taking care of me. It did not go as planned. All seemed well when they finished and stapled my tummy back together. Sadly they soon knew there was a problem. I’m no doctor so this is in layman’s terms. The stoma was not producing and I was filling up with bacteria. After a week of excruciating pain and testing, of which I have no memory, they realized I needed emergency surgery as my white blood count shot up over night and they new right away I had a serious infection.

Once the un-stapled me they realized they had to stop the colostomy and re-route everything by ileostomy. Sadly the area was highly inflamed and the wound needed to be opened more. So, now, I have a large open stomach wound which will take some months to close.

***GRAPHIC PHOTO***

open wound

At this time I have to have a wound vac done twice a week. Sorry, but it’s fucking painful every time.

After wound vac is placed:

vac

Basically once it’s covered, it vacuums out any type of infection, and helps the wound the slowly close back up. Mostly I’m bummed because I might lose my cute belly button. Kind of sucks. ;-P

At this time it has closed up over 6cm in a short time. My surgeon says I’m the strongest person she has ever met. That even when it got really bad and they the I might go septic, my body fought hard and won.

Honestly, I don’t feel strong right now. The nausea is awful, it’s hard to sleep, and I’m in constant pain… but I will NOT give up now. I’m looking forward to the day they can hook me all back up.

My biggest issue is the anxiety from all of this. It’s a fight not to just break down in tears. But crying makes it hard to breathe and I have to be careful. Sneezing is a bitch as is coughing. But, again, this too shall pass.

I’m thankful to be home. Sadly the second day I got home my house flooded…

Go figure! 😛

Peace

FUCK · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM

 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.

Like global MS network ♥

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Peace!!

Anger · Fear · Health · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM

Depression and money!

I’m finding out that depression for me causes over-spending. Now this would be okay if I had an endless supply of funds. Some turn to food, I turn to online shopping… okay food sometimes! 😉

I’m sure many know the feeling. Being homebound with the internet shopping world at my fingertips makes it so hard to ‘just say no!’ Now, I rarely pay for shipping and always get discounts, but it all adds up. I love jewelry and that’s the one thing I can wear all the time, in bed or not. Candles and perfumes are my downfall as well. Clothes for the kids and fun stuff for hubby… the list goes on and on and on.

Depression is a bitch and it comes with many ‘costs’.

I know where my depression comes from, but it’s something i cannot find help for. I get depressed for the obvious reason, my MS, but there is an even bigger depressant I won’t go in to. I’m searching for help with it as I feel my doctors have dropped the ball.

I’m one of the poster children for the saying, “Life sucks and then you die”!

Peace out

Health · Hope · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM

September 3, 2013

A day for me to look forward to!!! Finally!!

My new wheel-chariot is only a heartbeat away… I hope!

Quantum Rehab
Quantum Rehab

On Tuesday a representative is coming to my home to see if I qualify for this rehab chair. Then they’ll take measurements and get started on getting me the chair of my dreams. I want it to recline, elevate my legs, and be able to rise up a few inches. I am hoping to get the base in orange for MS and animal awareness.

This is a huge deal for me. With the leg elevation option I’ll be able to get out of my bed more and maybe be able to get back to making some jewelry.

I haven’t had much to look forward to for a long time. Some may think looking forward to a wheelchair is silly, but when a wheelchair can mean independence, it’s not so silly. I love my old chair, but it cannot elevate my legs and I really need that and the other other options the new one has. I feel like a little kid getting ready for Christmas!!

Love and Light!!

Anger · Craziness · Family · Fear · Health · HELL · Hope · Love · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · RANDOM · Stupid Stuff

Just thinking out loud

Things I can’t do anymore:

dress by myself, get out of bed, go to the tinkletorium, drive, walk [duh], sleep on my side, lift myself up, use the stove/oven, go out in the sun, put on shoes, garden, laundry, vacuum, travel, cook, hold my bladder 😉

Things I can do:

sleep on my back [boring], watch endless amounts of tv/dvds/netflix, use the computer, manage our money, sleep [I’m the pro], love, hope

I know I’m in a state of limbo right now. Not sure what to do or how to do it. Knowing is the first step. Coming out of it is the hardest step. I’ll get there…

Love and Light

“Knowing you’re falling is the first step to getting back up”  – T Radford

Christmas · Hope · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM · Stupid Stuff

Wheel-Chariot of my dreams!

Quantum Rehab
Quantum Rehab

This is the chair I need, want, and must have! It has a leg elevating option which will help my ankles not to swell. It reclines and can elevate a few inches to help reach things. I’m working on getting this sometime in the next few months. I have to jump through insurance hoops, but I’m used to that. MY neurologist is sending the store my diagnosis report, then they get with my insurance to see how much, if any, they will pay. Once that is done a representative comes to my home to get measurements, etc.

Insurance will not help much. They feel a wheelchair only needs to get you from point A to point B. It does not need elevating legs, recline, or elevation. They call those ‘luxuries’!  Are they fucking kidding me!! It’s a ‘luxury’ to elevate my legs, to recline, and make it easier to reach things? WOW!! I guess it’s a luxury to be crippled too! grrrrrr I didn’t ask for MS so why is it so hard to want to be able to have a chair that helps me live my life with MS.

I’ll do whatever I have to, to get this chair. I spend my time in bed as the chair I have is a basic model. After 20 minutes of sitting my legs swell and my lower back is in pain. This ‘new’ chair will allow me to get up and get going. I will be able to make my jewelry again because I’ll be able to elevate my legs at the table. I haven’t made anything for so long and I miss it terribly. If I have to, I’ll sell myself on the boulevard… Okay probably not, but you get my point. lmao I really need this chair. When I found it whilst surfing the net, I started crying. I saw my ‘new’ life with this chair. I want an orange base for MS and animal awareness. It will be so cool. I feel like a little kid waiting for Christmas!

I’m  back to getting the excess weight off again. I figure, if I have to be in a wheel-chariot, I’m going to be a hot bitch in a wheel-chariot! I’ve never been heavy. So this weight gain is very depressing for me. I look in the mirror and cry. Why I don’t look in the mirror much. I know if I lose the weight it will be easier for me and those who help me on a daily basis. I even turned down cherry cheesecake danish today. OMG, it was not easy! Paleo and gluten free is my lifestyle. I will do it this time… I have to.

Love and Light

Anger · Craziness · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm · Silly

Are you freakin’ kidding me!

Another sleepless night here at Casa Radford! When this happens my mind cannot quiet down. After watching some eye candy on The Vampire Diaries, namely Damon, Klaus, and Stefan, crazy thoughts went flying through my head. Get your mind outta the gutter!! lmao

Yummy!!!
Yummy!!!

Things that irritate me:

Chewing with your mouth open

People who can’t put down their cell phones when visiting. RUDE much. Stop freaking texting.

Those who answer a question WITH a question.

People who complain about getting fat, when the only thing ‘fat’ is their head!

Dealing with idiot nurses at my neuro’s office.

Angelina Jolie’s lips. Get that woman some Chapstick for fucks sake!!

Dark thoughts:

Anxiety strikes when I can’t sleep and depression sets in, then anger, then craziness. I go from crying, to wanting to just punch someone in the face, to giggling. Time for the huggy jacket! [in black please with silver studs]

My new room!
My new room!

Psycho Babble:

The next thing I know is I’m singing songs in my head. I find myself rockin’ out as I’m lying down. Hmmm, this is exercise for me. 😉 Then I ‘write’ down, in my mind, what my next blog will be. It always sounds better in my head then when I actually start typing it out. Although they don’t make much sense either way. I think sometimes I might be a tad A.D.D… Oh look, a shiny penny.

What I will say, is that being in my head can be fun. Being a tad off is much more enjoyable than being ‘normal’. I’m also kind of lucky. I may be trapped i a body I hate, but I still have a window to outside world. I have an awesome adjustable king size bed, a cool hospital type table on wheels for my MAC [my link to life], and a huge TV on my wall with wireless capabilities [Netflix, You Tube, etc.]. I’m pretty spoiled by my hubby. He’s all right… for a guy! 😛

Until next time.

Love and Light

Anger · Craziness · Family · Fear · Health · HELL · Hope · Love · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Silly · Strength

5am… Oh Mr. Sandman!

Nights like these are beginning to piss me off. Mr. Sandman must have lost my freakin’ address. My night has been watching movies and trying to sleep.

I realized after reading yesterdays blog, I really haven’t gotten out of bed for a while now. I’ve been thinking about the ‘why’ I haven’t. If I am truly honest with myself, I know the reason… “What’s the point?” I could get up and sit in my wheel-chariot, but then my ankles become kankles, and I really hate that. I’m no longer able to drive, so I can’t just get up and go out. Unless I have help, I can’t even get out of my bed to get in my chair. So, again, “What’s the point?” I feel safe here. I really hate being out in public. I’m in a body I hate, and frankly I don’t like people. I’m not me anymore.

Some might say I’m feeling sorry for myself. Well DUH! I’m fucking human, of course I do at times. Anyone dealing with a progressive illness is lying if they say they never feel sorry for themselves. It’s human nature. I also feel anger, sadness, emptiness, loneliness, and the list goes on. My body is broken and it’s messing with my head. I try so hard to find the ‘positives’ of life, but when you can’t even sit up in bed without someone pulling you up by your arm, positivity is hard to find. Then the fear sets in. Will tomorrow be the day I wake up and my body no longer moves at all? Every night that thought crosses my mind. I’ve lost 2 dear friends, younger than me, to complications of PPMS. It’s fucking scary. And please don’t anyone say it could be worse! This IS my ‘worse’. Death would be easier. I’m so tired of fighting this all the time. But, I’ve never been a quitter, so death is not an option. But, I’m just so fucking tired!!

I know some of my emotions right now stem from the loss of my mom. But honestly, there’s nothing wrong with telling it like it is… the cold hard truth. So many people with with debilitating illnesses keep their inner thoughts to themselves for fear of what others might think. Yes, I think of death, and how much easier it would be. Will I go there? NO! But, the thought is in my head at times. It’s much healthier to talk about it then keep it bottled up inside. People with disabilities unite!! It’s okay to be sad, it’s okay to feel sorry for ourselves, it’s okay to be angry as hell. We need to vent it out in order to heal our minds. Honestly, if the ‘healthies’ and/or others don’t like it or want to hear it, fuck them! They’re not worthy of us in the first place. You really do find out who your try friends are when illness [serious illness, not a cold 😛 ] strikes.

People tell me all the time to think of the good things; family and my friends who love me. DUH, I know this, but I’d also like a little quality of life. No one but me lives in my body. No one but me feels my emotional and constant physical pain. My body no longer works, I can’t do anything without someone there to help me. My independence is gone. When my kids are in school and hubby is at work and I’m home alone, it’s terrifying. I can’t get out of bed or do anything for fear of falling and hurting myself. It feels like i’m in jail.

There’s a line from one of my favorite movies, Last Holiday, that sums it up. “I would like to be cremated. I spent my whole life in a box. I don’t want to be buried in one.”

I know kind of depressing, but my feelings in a nutshell.

 I’m not getting better. I will keep progressing. Scary part is that progression at this point is heading towards total paralysis. Oh joy!

I am looking in to a new neurologist. After 16 years with the same one I feel he’s getting a bit lax. I’m also looking in to a wheel-chariot that has a reclining and raising option. I’ve been looking for clinical trials for PPMS, but most say the patient needs to be able to walk 20 feet to qualify. Are you fucking kidding me. I even looked in to a trial for incontinence, and didn’t qualify. SERIOUSLY!! I’m the incontinent Queen for fucks sake. If they can help me, they can help anyone! 😉 There’s all kinds of new medications for RRMS. Shit, if they could find a medication for the progressive form, that works, they could control RRMS completely. Get on it you researching fools!!

Well peeps, it’s now after 6am. Think I’ll find another movie to watch. Preferably something boring that will put me to sleep. Where’s my ole economics professor when I need him. lmao

A quick note, I’m reading some cool spell books. Who knows i may be able to cure myself. I believe in the power of nature and balance. Damn, I’ve tried everything else, it can’t hurt to give this a go. I’ll keep you posted.

Ta-Ta for now. Love and Light