Health · Multiple Sclerosis · PAIN

Living with MS – Newly Diagnosed

Tracy8 Comments

SMACK!!! That’s what it felt like for me when I was told I had MS. Fear, anger, depression, confusion, why, why, why, and a whole bunch more expletive feelings which I will not mention! 😛

I see so many around the net with their well meaning advice to MS newbies. The problem is they are putting their MS on everyone else. Meaning, what happened to them will surely happen to you. And, yes, similar things may happen, but never the exact same.

I watched a video one day and the woman said that MS IS a progressive disease and at some point all will progress! Sorry, BULLSHIT! There are people who have MS and never ‘relapse’ or progress. They can stay in remission and never have another attack. This is the type of information that can send a newbie into a very quick state of depression.

We are all different in our MS as we are in our lives. No two people will have the same exact journey with their MS. It may be similar at times, but never the same.

My advice to newbies, listen to no one, not even me! lol Do your research, talk to your doctor, look into the medications to see if they are right for you. Research, research, research.

What I will say straight out, eat right [no more sugar free, no processed foods, etc], light exercise, yoga for MS, contact your local MS Society, find an MS counselor. My counselor, Margo, has helped me through many a hard time in the past 11 years. Find out about the medications, study up on them.

For me, and only me, I no longer do any injections. There was no proof they helped progressive forms. For me, and only me, the side effects were not worth it. I do however take medications for pain [yes MS can cause pain] and depression/anxiety. I did injections for 7.5-8 years. Since being off of them for 4 years now, I do feel better. BUT, that is my journey and it may not be yours!

You may never end up in a wheel-chariot, you may never need walking devices. So, do not let others scare you. Get your information on your own and never let anyone tell you what you need to do for your MS journey.

I wish you…

Blessings and Hope…

My mini disclaimer: These blogs are from my perspective of my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.

Ramblings

Snore-EX

Tracy16 Comments

So, I purchased the Snore-EX from Amazon hoping that it would stop my hubby doing the buzz-saw at night. And oh mercy it has!! Now I’m not saying it will work for your ‘snorer’, but for mine it did. No longer will he have to sleep in sofa city, or with one eye open. [in case the skillet ends up in my hand]

My Savior

The first night it fell out, and he snored. He woke up, got it back in and no more snoring. He molded it to fit him, and wallah, SUCCESS!! He had slight jaw pain last night, but nothing bad he said. He also said he felt more refreshed in the morning from not snoring. So, for us both, it is a win-win situation.

For the price, it was a gr8 deal!

I’m doing the happy dance here!

woo hoo

Blessings and Hope!

Ramblings · Sarcasm

I have a food confession…

Tracy4 Comments

I try so hard to live by my paleo lifestyle. It helped me to lose 20 pounds and feel better. It did not allow me to walk or ‘cure’ my MS. [MS CANNOT be cured, but it can be controlled for some] What the paleo lifestyle did was help my fatigue, my dizziness, my IBS/colon issues, and an array of other little issues. As stated before, it even helped me to lose weight with minimal exercise.

So, what is my confession you ask?  [I know u r asking] I have fallen off the wagon for a bit as of late. For the last 3 nights we have McD’s. The most evil food in the world. I am so mad at myself for eating it and for allowing my kids to eat that crap!! The breads alone will make you sick.

I know better, which is why I am so pissed off at me. I know I feel better when I eat the right way. So WTF is my problem??  I eat this crap and then hate myself for it. HELLO…wake up Tracy!

I quit smoking 3.5 years ago.

That was [so far] the hardest thing I have ever given up. Do i feel better for it, YES. Do I miss it every day…YES. But, I do not pick one up and start again. So, why can’t I quit the shitty foods?! And yes, they are shitty for EVERYONE!! Why do we think The USA is the ‘fattest’ Country. We are made to believe that it is ok to eat fast food. They have nutrition guides and use better oils!!  Ya, and I fell off the turnip truck yesterday!!

Ok, ok I’ll get off my soapbox… for now! We will be discussing this at a later date in my ‘Living with MS’ blog series anyways. Bet ya cannot wait!!

Anywho, I needed to come clean and confess my food splurge!! Even though it is all I ate on those days, it is still the worst things I could have put in my body. I will be paying for it for the next few days. It is already starting. Time to water up!

Blessings and Hope…

ps…if you need to find me, I’ll be in my bathroom!

Fear · Health · Multiple Sclerosis

Living with MS – part one

Tracy5 Comments

I’m going to start a series of blogs on, you guessed it, Living with MS. Each blog will have a theme to it, ie: newly diagnosed, medications, family issues, friendships, exercise and nutrition.

My mini disclaimer: All of the blogs will be from my perspective on my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.

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My Journey for the truth began after the birth of my son in 1994. I was overly fatigued and started to fall quite often. It was chalked up to bad ankles [from ankle breaks when I was younger] to postpartum depression. I had been diagnosed with CFS in 1986 at the age of 22, so they added that to the list. In May 1996 my twin daughters were born and walking became quite hard. I slept downstairs with the girls in their bassinets for the first few months. Fast forward to July 1997. For months my left ankle would twist and I would have serious trouble walking.  I had been to the doctor any times during this year and told the same things as before; bad ankles, postpartum depression, CFS. Finally I got mad and made yet another appointment. This time I saw a Physicians Assistant, he talked to me for a bit then asked me to walk for him. The next thing I knew he was setting me up for an MRI…a What? The next month was kind of a blur. Mri’s, evoked potentials, spinal taps. Then then the results, Mrs. Radford, you have Multiple Sclerosis. Silence!

I do not remember too much of the next months. More tests, learning how to inject a 1.5 inch needle into my thigh, crying, denial, more crying, then complete anger! At that point I had ‘the good’ MS. REALLY?! Relapsing-remitting MS. I may never progress, might be in a remission for forever even. Well, my remission never came, but my progression did.

During the next 7.5-8 years I got two second opinions at the UCLA MS Clinic by their top MS Neurologists. Damn, both said, “Mrs. Radford, you do in fact have MS.” Bummer!

From 1997, I went from ankle braces to crutch canes to walkers to manual wheel-chariots to my now power wheel-chariot.  Not really where I expected to be at 45 years old.

So, in a quick nutshell, this begins my journey. I am in the battle of my life. For some, this may not be the worst battle out there, but it is my battle and it is happening to me, so it is the worst out there. Living with MS is a journey for those with MS and the people who love them. Maybe, in some small way I can help someone through a rough time or even share a few laughs. Hope to hear from you.

Blessings and Hope…

Craziness · Fear · Health · Ramblings · Sarcasm

Yup, you guessed it…

Tracy6 Comments

Another ‘no sleep in sight night’ for me. But I wonder…is it because I cannot sleep or because I do not want to sleep? I had mentioned a while back that the night is my haven. It is dark and quiet. [the way I like it] My kids call me momma Vampyre. I am normal. No need to get up and go. No need to do anything at all. The house is ‘asleep’ and I can be whole, if only for a short time. Hubby is buzz sawing in sofa city again. The kids [off school] are quietly playing video games. And, again the big dogs are sound to sleep in here with me. Life, for me, can not get any better than this. As I read this, I realize it  may sound kind of  pathetic to those who do not know me. In all actuality, it is quite awesome. I can hear the occasional loud ‘snort’ from sofa city, and the kids pop in from time to time to get a hug and tell me they love me. That’s wicked cool if you ask me.

If I was well, life would be sooooo much more different. But, I wonder, would it be better? Would I be happier? The initial answer is HELL to the YES!! But, really, would it be? My husband would have a better wife, my kids a better mommy.  So for them, yes, I feel it would be better. Sadly, we will never know. Would I give my right arm for my legs to work again, fatigue to stop, MS to go the fuck away…YUP!! Cut it off, no anesthetic, whatever, just give me back my legs and take the MS back!! Hmmmm, ok maybe use anesthetic. lol I mean, I’m left handed…

I have been watching a buttload of movies and get so depressed sometimes. I hate people that can walk!! Ok, not the people so much, but their ability to walk. I get very jealous. Yup, I said it, I get jealous and yes anger plays a part as well. I’m human, it happens. I’m also honest. When I used to pick up the kids from school, I would sit in the van and cry watching all the moms standing around and getting their kids. Some holding babies or their toddlers. I barely got to do that with my girls because by the time they were born the weakness got very bad. I was much too afraid to carry them for fear of falling and/or dropping them. Even with the boy, I was afraid to fall and/or drop him. By then he was 2yrs 4mos. It really sucked! What they did get, was a mommy home with them all the time. Helping with homework, reading to them, being there for them 24/7. So, sometimes I feel they got more from me than from the ‘healthy’ moms. My time was for them. If anything, hubby got the worst of it having to do all the things I could no longer do. Aw hell, it builds character! lol

I used to get mad as for years I knew something was wrong. I was dx’ed with CFS in 1986. I guess they figured a 6′ tall, thin, healthy woman, did not need an MRI or anything then.  I was working and going to college. No wonder why I was tired. Then I wonder if I had know, would I have had children? Would I have married? My answer, most likely NOT! It’s now a tad late for the what ifs. So, I just keep on keeping on and wear whatever mask is needed for the day. My masks are my protection from the world. Those close to me know when my masks are on [sometimes]. Those not close to me do not need to know. It is better for them they do not see the real pain behind the mask. My way of protecting others I guess.

As 2009 comes closer to the end, I wonder…will 2010 look brighter? I guess the real question is, will I look to 2010 as brighter? Just like ‘how many licks to get to the center of a lollipop’… the world may never know! HA

Blessings and Hope …

Quotes · Ramblings · Sarcasm

My quote, my new motto…

Tracy6 Comments

So last night while creating my [medication induced] blog my mind went blank. As I was trying to find a ‘witty’ way of ending, I put down that I lost my train of thought. I looked at it a few times and and BAM… a thought hit and fit me perfectly. Hence the birth of:

Yes, yes I had to make a mini banner!! lol

Now, I am not sure if it has been said before or not, but for now, it is mine…all mine! 😛 I had friends telling me that it gave them a laugh and they loved it. It makes me very happy when I can turn a [sometimes] bleak blog into something that makes people smile. That’s how I roll! I try to always leave readers with a smile even when my blogs may get a tad depressing. My favorite emotion is laughter through tears, and joy from sadness, why I find a way of ending on a ‘happy’, even sarcastic note.

Out for now [at least a couple of hours]. As always:

Blessings and Hope…

Craziness · Fear · Ramblings

Hey Mr. Sandman……

Tracy13 Comments

So, another ‘Sleepless in California’ night going on here. At least no snoring issue! Poor hubby is in sofa city tonight. Thankfully, for him, it is a nice pullout bed with a nice mattress pad thingie. He can snore until the cows come home without fear of waking up with a headache! I actually have my room and my bed all to myself too. Usually when dad is in sofa city one of the girls come on in and bunk with the mom. They worry about mommy being all alone. [not knowing mommy loves to be alone…sometimes] I’m watching “Bride Wars’, playing in FB and blogging. Does it get any better than this, I think not! I was going to watch ‘Silence of the Lambs’, but figured maybe not when I am all alone! lol That movie freaks me out.

Chance [Border Collie] is sleeping on the bed right next to me and Sadie is on her bed on the floor. Dexter is in with the girls, so all is quiet on the western front.  Every now and then I hear Austin yell at his computer game. This is how I know he is here and alive. 😛

As I watch the movie [Bride Wars], I feel sad. I see such an amazing friendship and cry for one like that. I know it’s a movie, but I have heard others talk about their BFF’s and I feel detached  from it. I mean, I feel very close to a select few of my friends, but wish we all were closer to create the bonds of those who have grown up together and live near one another. I am probably not making much sense here. Shoot, I do not even know what I mean. Here I go, rambling yet again.

I mentioned in a blog before that I tend to write what I’m thinking and how I am thinking it. So, many times my thoughts are out-of-order and all over the place. If you can understand me, then you might be a bit nutty like me. lol Or like the song says; ‘I’m not crazy, I’m just a little unwell’. I have all these ideas and thoughts that pop in my head, but most of the time they make no sense whatsoever. They must be medication induced or something. I know some of my dreams [when I actually sleep] are. lol I just cannot pinpoint why I am all over the place lately. Usually I can focus on things. Now, not so much.

I truly hate leaving my home. Kind of scares me as at home I am safe and in control. When I go out, I am at the mercy of others and my wheel-chariot.  Others for help in reaching items on high shelves, my WC if the power dies. Others drive my van with me in it, as even though I am still able to drive, I prefer not to. I have this nagging fear in the back of my head that all of a sudden my right leg will go, like me left, and I will not be able to brake or accelerate. That has not really ever happened before, but the fear is there. And it is terrifying.

I keep having one dream that is the same. Maybe why I am having a hard time sleeping. I dream that I wake up and am completely paralyzed. Like the woman with MS that Dr. Kevorkian helped. So, ya, that might why I am having trouble sleeping. Hmmmm, think I’m on to something. I know that progression is in my future. The rate of progression is not known, and I am praying it is a slow(er) progression. Oh shit blah blah blah.

So, my train of thought has left the station.  Peace out!

Blessings and Hope…

Family · Health · Ramblings · Sarcasm

Sleepless in California…

Tracy14 Comments

The hubby is ‘softly’ snoring, kids talking as quiet as kids can, and I cannot sleep. So I am here to ramble…

Do you ever feel like something is missing, or you forgot to do something important?  I HATE that feeling! I am not one to forget things, and yet lately I forget everything. My MS is messing with my cognitive  skills, and that pisses me off more than losing the use of my legs. Shit, even more than incontinence issues. I actually forgot to pay two bills in the past months. That is so not me. Thankfully we are never late and I got out of late fess. Get this, I even have reminders…and i still forgot. It’s the damn ‘some-timers’; sometimes I remember, sometimes I don’t! 😛 So, if anyone out there knows what I am forgetting to do, please let me know. rofl

This blog may be out of sorts, as I have no clue about anything. My girl Ruby made it through her 11 hour back surgery with flying colors, so no more worries there. Christmas is over and it was good, but YAY it’s over, so all good there. A woman needing help, got help thanks to Laurie and her call to arms at Facebook. So that is really good.

I am feeling sad about my good friend Lu’s father, passing away. I so wish there was something I could do to help her through this time. Lu. if you are reading, know you are in my thoughts and blessings and if you need me, I’m here! I cannot imagine her pain. That is the problem with having friends so far away, I cannot get over to her home and give her a hug. Love ya Lu!

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I have so many thoughts going on in my lil head and cannot sort them out. ARRGGHH I get so frustrated when this happens. There is no sleep in sight and  deciphering my crazy thoughts. I start thinking about new designs for a bracelet, then POOF my mind goes to how can I get out and start doing some photography, then POOF thinking about a blog I want to write on finding my center. I try to concentrate on one, but then something catches my eye and I’m off to another dimension of space and time! lol

I have lil chicken scratches of things I think of and want to accomplish someday. I want a concert ukulele, but then I would like to try a zither or harp. I have heard the vibrations of musical instruments on the body help to center some, find a sense of peace, if you will. I re-tried to play guitar, but my hands were not strong enough to hold down the strings. We have a piano, which I mess around with, but it’s a lil big to have in my bed on bad days! So, I am looking for something small enough to keep with me. I need music in my life…

I figured by now I would be getting tired…NOPE. Just more goofy. Maybe it’s my meds. Ya that’s it, it’s my meds.

Hubby is no longer ‘softly’ snoring. Now he is buzz sawing it. It’s like razor blades being slid through my brain.

me...

I just ordered a snoring mouthpiece thingy for him. I so hope it works or he will be back in sofa city soon. I see visions of me, a wrought iron skillet in hand, and his head. I am thinking ear plugs before that vision becomes reality!! I can still hear him even when he is in sofa city, even when I have my ipod on. The house shakes. I’m thinking it’s it the big one [cali, earthquakes], but no it’s just him…snoring! I have some earplugs from when I had my last MRI. They kind of rock. Better than the ones in the store. But they suck to sleep in. So, pray for the hubby that the mouthpiece works, or no more cal king bed for him!! mwaaaahhhhhhhh

OMG, so hubby is snoring. Not too loud now as the plugs are in, but now one of the 3 dogs just popped a HUGE bean and it stinks!! Holy man…where is the spray? rofl This is so life in my world. I love it! Loud and smelly and I would not change a thing. [maybe get some nose plugs too]

I need Mr. Sandman please. Hope he’s cute, maybe Gerard Butler cute. Maybe not, as no sleep would happen if he was my sandman!! YUMMY man!

Ok, so now going to go surf the net a bit more, maybe play a game or two and hope for sleep. For those who made it through my ramblings, bless you. You are brave! Now I bid you good-night!

Blessings and Hope…

Health · Holiday · Ramblings

It starts with one person…

Tracy12 Comments

Barbara Rhyne tucker was to be without heat, without the basic human essentials in KC, MO. How can this be you ask? Well, even now we still have ‘slum’ lords in our Country that make money off of those less fortunate. Yes, here in the United States of America!

Laurie Zieber took action and sent a call to help out to all her Internet family. For Story, Click here.

This morning, I stood up with Laurie and sent emails to various news stations:

Does Ebenezer Scrooge really exist? He does for the tenants living in the apartment complex with Barbara Rhyne Tucker.
How can this be happening in our World today? How can we allow ‘slum’ lords to deny basic human rights for their tenants?
This man denied a heater to her because she took a stand against his tyranny and called the city on him. Someone needs to stand up and get her story told.
There are elderly in this building as well. In blizzard conditions and without heat, this could be devastating.
So, before you head off to your warm and cozy homes, Speak up and take a stand.
Let’s show the World that Christmas miracles really do happen!

Blessings,
Tracy Radford
http://afabulousflair.artfire.com
https://mittr.wordpress.com

When the world says, “Give up,”… Hope whispers, “Try it one more time.”

Steve Kaut from KSHB-TV responded:

We interviewed your friend and the story will run tonight.
Thank you for the heads up.

Steve Kaut
KSHB-TV

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As you see, it does start with one person, one person who truly cares. Laurie Zieber was that person. Thanks to her and the many people that joined her, Barbara and the tenants at her building will be heard. Stand up against tyranny, stand up against wrong, be the voice, and miracles WILL happen!

Blessings and hope…