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!!
I’m finally back to seeing my neurologist on a regular basis. Last month we decided to have me re-fitted for AFO braces to stabilize my ankles. [foot drop]
I was fitted for both ankles yesterday. While I am unable to walk, we are hoping these braces will help me to stand up using my sit-to-stand. I have not been able to stand due to my foot drop[s] and weakness in my knees and hips. I am hoping for a good outcome. I know it will take some time and a lot of pain, but even the pain will be worth it to me. It was tough fitting me for the braces as my feet literally just hang down. It took some serious stretching and pain to get my feet casted. But, WE DID IT!!
This month my neuro and I decided I will start Tysabri infusions again.
I started Tysabri back in 2011. My blog mentioning it is here. After some time on it I contracted hepA [medicinal] from the medication[s] I was taking. This time I am going to be very careful of the other meds I take while on Tysabri. I will be staying away from acetaminophen and any other med that may cause organ damage. I am being tested for the John Cunningham Virus (JCV) first, as JCV could lead to progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. I had no issues with this 4 years ago and am hoping I have none this time around. After my AFO fittings were finished, I went by my neuro’s office and I signed all the paperwork to get the process moving along. I will try anything to help myself as I truly have nothing to lose.
Last time I ended up having a power port inserted in my chest for easier infusions, as my veins are shot. I am so glad I did not have it removed when they stopped the infusions. Maybe, somewhere inside of me I knew that one day I’d give it a go again.
I’m trying to keep a positive attitude about all of this. I know I will still have my nightly cry, but I have to get it out somehow. Thankfully, my caregiver and BFF Steph, never lets me wallow for too long.
I GOT THIS!!
Any person who abandons a senior animal (or any animal) at a shelter has lost all their humanity. These people should not be allowed to ever have another animal. It is a privilege to have a pet in your home, they are not property, they are family. People who do not feel this way, should not have any pets.
Remember, adopt don’t shop!
Blessings to all the animals unwanted, abused, and thrown away! You all deserve(d) so much better.
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
So, my friend Steph wants me to do an ‘Ask Tracy’ sort of thing. For some reason she finds me funny and refreshingly errrr, brutally honest.
Right now I’m pretty much bed-ridden, a prisoner in my own body. The boredom is making me a bit nutty… Even more so than normal. lol So I thought this could be fun.
So, if anyone has any kind of question, ask me in the comment section of this post. Remember, I am brutally honest, so if you do not want to hear/read what I think, then do not comment. 😛
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!!!
It’s sale time at MzTracyr Designs! EVERYTHING is now 35% off in my shop.
I’m working on getting new pieces in my shop. New and different designs; gemstones, sterling, copper, decorative pieces.
So, come on by and enjoy the savings. Remember, Christmas is right around the corner!!
Love and Light!
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!!
Funny stuff!! 😛
Love and Light!
Making it Through the Rain 