Just call me Grandma!! bahahaha
NOT MY LEG!! Wrong gender. lol Just say no to Jr. High tube socks!! lmao
So the orthopedics office called and said these braces will be better for me to start with, due to the tightness of my tendons. These will help to stretch them out easier. I CAN work these bitches. First NO tube socks, no man legs, cute different colored laces, some fun cute socks, and my hot skinny calves! Maybe even some Swarovski crystals all over. Yeah baby!!
Again, I got this!!
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***
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:
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
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.
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!!!
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 ♥
https://www.facebook.com/globalmsdirectory
Peace!!
A day for me to look forward to!!! Finally!!
My new wheel-chariot is only a heartbeat away… I hope!
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!!
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
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
Yup it’s that time again. I seriously have slacked off this year with the promoting of the walk. My walk is this Sunday, April 15 at the Rose Bowl.
I roll so no one will ever have to hear the words, “You have MS!” No child should have to watch their mommy slowly lose her abilities. No child should have to see their mommy be taken away in an ambulance. No mommy should have to explain to their children why she can’t get out of bed, why she can’t drive them places, why she can’t play with them. (Daddies and others also have MS, but this is what has happened to me) MS is a family disease, not only the person with MS is affected.
My fabulous team, Tracy’s MSKateer’s, is comprised of the best people ever from NBC/Universal. Best looking team too! 😉
If you are able to help, please click on the banner below and donate to help find the cure. If you are not able, please share my page and/or blog as maybe someone you know is able to donate.
I hope for the day when I can get out of my wheel-chariot. If that doesn’t come for me, I hope with research no one else has to ever be in a WC again.
I’ve been asked recently why I haven’t blogged, honestly, I’m just blah! Lately not much on caring or really even trying. 2012 started out with flu going through my house. 
I have not had the flu for years thanks to my MS. Yes… thanks to my MS. My immune system is so overactive that colds and flus go right past me. The Tysabri infusions suppress my immune system, so, lucky me got sick! As we all know the flu makes ya all weak and shit. Times that by 1000. I’m already weak so the flu pretty much paralyzed me. Happy fucking joy joy! I’m trying to be positive that since the year started out so horribly, it can only get better. <insert sarcastic evil laugh> When I used to think that way I went from legs braces to a cane to a walker to a wheel-chariot. So the ‘it can only get better’ comment doesn’t mean all that much to me.
On a positive note… I’m getting a Picc Line inserted in the next month or so. My veins are pretty much non-existent and it hurts like a beotch when trying to find my veins. So this is a good thing. It’s a damn good thing I’m not an intravenous drug user! Seriously!! lmao
Now to share an amazing song my kid’s former nanny, Marilyn, hooked me up with. We are so blessed to still have her in our family after all theses years! She knows me so well, this is my song!
Hard Life – Brad Paisley
_______________________
Lyrics
Stop starin’ at me
Leave the sad looks at home
Everybody feels bad,
And you don’t understand,
It’s not like I’m alone
‘Cause everyone has battles to fight
And I don’t need your sympathy tonight
Yeah, it’s a hard life
But I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
And yeah, I have a hard life but in some ways everybody does
There’s a lot I can’t do
But don’t be judgin me
I’m in a body I hate
But I have my faith, more then what you see
So what if I can’t kick a soccer ball into a goal?
I feel like I can lift 500 pounds with my soul
Yeah, it’s a hard life
Oh, but I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does
And some like me have lost their battle
But they will be the sun that gives you warmth,
And lights the way so we can shine on
Yeah, it’s a hard life
But I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does
Yeah, I have a hard life but in some ways everybody does
_______________________
Love and Light! xx, Tracy
As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.
One major side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. This medication suppresses my over active immune system due to my progressive MS, which can lead to this viral infection. I will be monitored for medicinal hepatitis [liver damage] and UTI’s. Now that my system will be suppressed I am more prone to getting other issues.
When getting ready for my appointment we [hubby and I] discussed the possibility of PML. When Roger looked at me and said that this way I can get my wish, to die, I sat open mouthed. I have stated, when in depression, that death is freedom and sometimes I do not want to wake up in the morning, I guess he took it literally. With tears welling up in my eyes I explained that I do NOT WANT to die, I just want the pain to go away. I want to walk again, to be able to hold my bladder, to be able to go out in to the sun, to be able to drive, to not have mental and physical pain… I want to play with my kids!! I will be honest… there are days I do not want to be here anymore. Unless you suffer from a serious chronic illness it is hard to grasp. But, in all actuality, I do not want to die. I just want my life back, a quality of life back.
I’m not even asking for much from this medication. I just want to be able to drive again and hold that bitch of a bladder! 😛 I’m not expecting much, as when I do my hopes are always dashed, so I am just waiting. It’s all I can do. I’ll keep fighting until my strength is gone. I need to be here to annoy my kids for a long time to come. It’s what I live for! lol
I will now go once a month for the two hour infusion. They [who the hell are they] say it can take 6 months to a year to see a difference. I’ve waited this long, so what’s another year or so. My problem is when I want something, I want it now. MS has certainly taught me patience… for the most part! [I try, really I do]
A new adventure is happening, and as always, I will go in head first! Wish me luck!
Love and Light!
Making it Through the Rain 