Craziness · Health · Ramblings · RANDOM

Hope is in the air.

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]

afo

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.

tysabri

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!!

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!

Ramblings

Shop Re-Opening!

Well, it’s getting there. Left Artfire and now back on Etsy. I stopped 2 years ago as my MS took over. Now I am trying to take my life back. Am hoping it works as I need the boost. It’s going to be a long process getting all my jewelry listed, but it keeps me going. Just hoping for some success here. Only time will tell..

Come on by..
Come on by..

Love and Light

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 · Ramblings · RANDOM

Etsy: Policy Changes

UPDATE: Etsy is a joke. The site is still there and some cards as well, just a word change here and there. I guess poking fun at religion and showing ‘a dead guy’ on a cross, as the shop owner puts it is also okay in Etsy’s book. Wake up people…

Policy Change: Prohibiting Items and Listings That Disparage or Promote Hate

For me and many others this is a day late and a dollar short. They are making it look like it was a lil mishap and they took care of it straight away.  NOT!!! This shop had complaints going for weeks. Nothing was done except a few blanket responses.

It took over 16,000 signatures and a spot on Jane Velez Mitchell’s show for them to even give a shit. One of Etsy’s own designers purchased from the shop and wrote how the cards were hilarious.

To understand my disdain go here: Leaving Etsy.

All their “aren’t we awesome cause we wrote new terms of use blog” did was leave a poor taste in my mouth. If not for the signatures and the Jane Velez Mitchell spot, the cards would still be there. They care nothing for how it made some fellow Etsians feel.

I am proud of the stand I took!! My reply to their blog:
I, for one, am very glad Etsy finally took a stand. For me however, the stand came much too late. That terrible site was left up for much too long. Myself and many friends are already leaving the Etsy site.
For those ‘wondering’ about other unsure items, you must have been out of the loop regarding the site in question. The site clearly harassed certain groups of people, which was already in the terms. Still wondering why it took so long to remove.
My only regrets is no longer selling or shopping here. Funny thing is one of the Etsy designers purchased from the shop and thought the demeaning and harassing cards were funny. Go figure!
Good luck to all…

 

xx, Tracy...
Health · Ramblings

Acceptance – for Robin

ac·cep·tance n.

1. The act or process of accepting.
2. The state of being accepted or acceptable.
3. Favorable reception; approval.
4. Belief in something; agreement.
5. Abbr. acpt.

a. A formal indication by a debtor of willingness to pay a time draft or bill of exchange.
b. A written instrument so accepted.
6. Law Compliance by one party with the terms and conditions of another’s offer so that a contract becomes legally binding between them.

————————————————————-

When it comes to ‘accepting’ my disease, I choose not to. You have those who say, “If you do not accept it, you cannot move on!” I disagree. I will never accept the fact that this is my fate. I know i have MS. I know what it has taken away from me. Bottom line, I know how much it sucks! 🙂 I guess I feel if I use the word ‘acceptance’ that it really means I have it. I know that sounds strange, but that is the only way I can explain it. I deal with it, I ‘live’ with it, but I will not accept it. Believe me, I was in denial [no, not the river in Egypt] for the first 2 years of my dx [diagnosis]. I actually had 2 second opinions as I knew in my mind it had to be something else.

The first year of my dx I had my first second opinion at the UCLA MS clinic. Yup, you have MS. Then in the third year went back to UCLA again to see another doctor doing some new research. She said if she did not know my histroy she would dx me with Progressive-Relapsing MS (PRMS), the worst course. The look on my face must have killed her as she quickly said since knowing my case she would stay with Secondary-Progressive MS (SPMS). I steadily progress, [SUCKS!] but hopefully I will stay at the ‘plateau’ I am at now. Wishful thinking, nah…HOPE! Knowing me, I’ll get a third second opinion one day! rofl

Again, I know my disease, very well. I know I have it. I deal with it and live with it every day. This does not mean I EVER have to accept it. I think I see acceptance, in this case, as giving in to it. And that will NEVER happen. Some say I am too much of a BITCH [babe in total control of herself] 😛 to ever let it take me over. Personally I take that as a compliment. I am stubborn, strong, tenacious, driven, and a bitch! lol But, this is what keeps me going, keeps me fighting. I am not a quitter and will never stop looking for the answer. I do believe the cure WILL be found for MS. I hope in my time, but if not I hope for the next generation.

So, you see, for me acceptance is not an option. As long as we live our lives and not let our diseases overtake us, we are the winners!!

Blessings and Peace!

Ramblings

Mourning Independence – for Ruby

I have a friend dealing with back issues, surgeries, pain, and the feelings of loss. She is mourning her independence. And rightly so.

When  person becomes ‘disabled’ [whether is is permanent or temporary] life, as they have known it, changes. Simple things that we could once do can no longer be done. Simple things we take for granted, we do not take for granted anymore. Just getting out of bed can become a huge chore. And forget about trying to shop or clean or in some cases even get out of your house. Even showering can take every ounce of strength.

It truly is life altering and, in my humble opinion, deserves a mourning period. It is as if part of your life, your own self, has died. So, why is it we feel bad for venting or talking about ‘mourning’ our losses? I guarantee if it happened to a ‘healthy’ [as we once were] they would be talking until the cows came home. I think sometimes it is because they do not want to see someone they love in pain. But, sadly, some just really do not give a shit and do not want to know. So I say to the haters…move the hell on and do not read or talk to the person. We are better off without that kind of ‘friend’ anyway.

I think when a person becomes disabled they can remember what they once had, once were. I can remember walking, and sometime the sadness of that loss takes me to the edge.

I watched a program once where young kids in wheelchairs were featured. Most born with a disease that disabled them. One young boy, maybe 8 or so, said to an older boy that it is ok to be mad when your abilities suddenly are taken from you. That he was born this way and never knew what it was to walk. He understood how someone who loses the ability to walk later in life can become angry and depressed. They have the memories that might tear at them. WOW! Did I ever cry and talk to the TV. What an amazing young man and outlook. I never thought of it like that. It was then I realized where a lot of my sadness came from. The memories of what was.

So, mourn the loss of your independence. It is ok to do. Any person would as it truly is like a part of you has died. Just remember to not let it take over your life. As with anything, we mourn and [hopefully] are able to move one!

Blessings and Peace!

Ramblings

A great article from Truthout!

Truthout.org

Being a person who lives with a disabilty, healthcare is a very serious area for me. I have private insurance and still have to jump through hoops for care with my insurance company. Meanwhile the rates are raised consistently. It took 8 months to be paid for my power wheel-chariot. 8 MONTHS!!

Then, constantly denied medications and/or tests until my doctor calls their rent-a-doc to get permission! WTF is that about? I think my doctor knows a hell of a lot more than their over the phone, who the hells knows who they are, what are their credentials, rent-a-doc! This is ridiculous to me.

The article, IMHO, shows what all the problems are about. The big M word; Money!!

Blessings and Peace to all!