Anger · Craziness · Fear · FUCK · Health · HELL · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Sarcasm · Strength

Too much of nothing

I started this blog with the hopes of chronicling my MS and my thoughts, etc.. Im realizing that with Primary Progressive MS, there is not much to chronicle. There are no more medications for me to try; hell there are no medications for PPMS. Wait, I’m lying. There is ONE possibly coming to a drug store near you, winter of 2017. But, not for me. Yes, it will be the first medication for PPMS, but I don’t qualify. My EDSS score is too high. I’m between 8 and 8.5. In other words, I’m too far gone! Well okay then.

I sit/lie here 90% of the time. I’m not even sure where I’m going with this entry. I’m not even sure why I’m even blogging it. Maybe out of boredom. I guess this is my personal diary that I just happen to share. A place for me to come back to and ‘remember’, the good and the bad. A place for me to vent. A place where I can say whatever the fuck I want.

I just wish I knew how to get my thoughts out of my head and onto here. A jumbled crazy ass rollercoaster is the only way to explain my thoughts.

“Outlook is grim”, has been the description of two doctors regarding my life now. Well no shit… But, did you have to say it out loud!! RUDE much. 😛 And, I know I know, anyone can die at anytime. They could walk out of their house and get hit by car. I get that. That would be easy. We start dying the minute we’re born if you want to get technical. Picture yourself  lying in bed 24/7 while your body slowly but surely dies daily from illness. It’s not for the weak. With PPMS, there is NO cure, NO remission, NO parole. So, the next time you want to use the ole. “well anyone can die just from blah blah blah”…don’t!! Above all… DO NOT compare one illness to another, especially if you, yourself, do not have said disease. You will never ‘get it’ unless you ‘get it’!

Scary part is that sometimes I really believe I’m going a bit mad. Seems par for the course…

madhere

Anger · Fear · Ramblings

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!!

Fear · Ramblings

MS and Me…

Here’s my MS in a nutshell; cannot walk, cannot sit up on my own, cannot get out of bed without using a Hoyer lift, daily pain, double stoma girl (colostomy, urostomy), numbness, fatigue, migraines, shakes, occasional bedsores, unable to shower alone, degenerative disc, obviously bed-ridden and wheel-chariot bound, drop foot, stiffness, pain, did I say PAIN, living in a prison that IS my body, no independence, unable to drive anymore, insomnia (severe), primary progressive MS (aggressive), hot and cold issues, memory issues, brain fog, kaleidescope eyes, dizziness, depression, anxiety, and the list goes on!

I fight every day, and the fight is exhausting.

I won’t stop fighting.

Hope is paralyizing. I won’t stop hoping.

I want to give up daily. I won’t give up.

95b79e44821977e43c74ea2e8bd726dd

I will be strong!

Craziness · Fear

Losing my mind

Since my last surgery in May this year, Im actually becoming “Tracy” again. I’m gaining back some strength and actually getting out of my ‘prison’ occasionally. I know I’ll never walk again, but if I can transfer on my own I’ll be happy.

this makes me happy!
this makes me happy!

Now here’s the kicker…when I start feeling even a tad bit good, I tend to over-do-it. Badly… I want so bad to be ‘me’ again I push it too far.

Some say the face of MS is invisible. For the majority of people with MS it is considered the invisible disease. But, for 5-7% of MS’ers I’m also the face of MS. The face no one wants to see or think about. Bedridden, wheel-chariot user, pain most can’t comprehend, and my MS list goes on. I’m the dreaded [badly] progressive form. So when I feel ‘good’ I want to do all the things that get put off. Then I crash and burn. And alas, I’m crashing.

I will get the rest that I need for a few days. I pray it’s only a few days. My last crash landed me in Hospital and then a 3 month depression. People, even some MS’ers, can’t comprehend the terrible pain and loss I have had. I hope with all my might they never have to.

Today I knew a ‘crash’ was coming, but I will no let it kill my spirit as I have in the past. Shit, my friend Stephanie won’t let me. Right this minute though I feel like I’m losing my mind. And, yes it’s spelled losing, NOT loosing! A huge pet peeve of mine. Sorry, I went off track a smidgen. 😉 My sleep is back to noooo sleep tonight. Muscles spasms and shakes are taking over my being. I think Aliens are coming for me to do some probing. Although, that may be fun…hey, it could happen. Now I really am losing it. Lack of sleep will make you insane. Trust me I’m there.

hope-hands1
it’s all I have…

Now I will sit here in the dark with the light of my MAC illuminating my room. Will I ever find my peace, my center? I do not know. But, I will always be searching for it.

Peace!

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

Fear · HELL · Medical · PAIN · Ramblings · RANDOM

Ain’t it nifty Tracy’s 50!

On March 12th, I turned 50. I told myself that on this day I would be able to stand up again or at least be able transfer to my wheelchair. Well, didn’t happen.

I’m sitting here, on my bed, listening to my baby Gatsby cry.  When everyone left the house, they left him in the from of the house. I can’t do anything to get him in here.  It’s killing me that I am not able to get out of my bed. I’m so pissed off right now!!!! Frustration Central here!!!

This was’t supposed to be my life! And for those who might say that life’s not fair… Fuck You! I know this first hand. The funny thing is that the people who usually say that, have no health issues or anything else for that matter! I think I’m allowed to be be pissed!! Since my fall five months ago, I’ve been bed-ridden, unable to get get up w/o using the 900.00 lift I had to buy, and utterly alone.

I do put on a ‘happy’ face most days, or at least I try to. This is why I have not blogged for some time. Even when I’m angry and depressed I usually add a dash of humor or attempt to be funny. I make fun of my illness to get through… but ya know, it’s NOT funny, there is no humor in this. I’ve been fighting since 1986 according to the MS specialists at UCLA. I’m fucking tired. I’m trapped in a  body I hate, ummm, scratch that… I’m trapped in a prison that is my body. Try spending 24/7 in bed, relying on, begging people around you for help. No privacy, no independence, feeling like a burden, in constant pain. [knees, back, chest, shoulders, neck, etc.] Thankfully not usually at the same time.

Just shoot me!
Just shoot me!

Next month I go back to an MS specialist to get on a new poison err medication to try and help me get a lil something back. Those who know about this wonder why I’m not excited. Why? Well the last 4 MS meds actually helped and I got excited… but the excitement faded when the side effects were killing my liver so I had to stop. The more excited I get, the bigger the fall. So, excuse me for erring on the side of caution. I’m tired…

I truly wish I had something funny to end with, but it’s just not in me right now. Think I’ll take something to help me feel no pain so I can get through the shit that is my life. Call me the pity party Queen if you will. Frankly I don’t give a shit. Hmmm maybe I’ll go buy some shoes I won’t wear anytime soon…

BTW… being 50 sucks!!!

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

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