A life of IFs living in a world of certainty

Trying to get Disability Benefits  Ughhhhh!!!!

Does anyone else feel like they are living a life of what ifs in a world of certainty? What if I have a relapse? IF I  have a relapse then what? I know I don't look disabled but IF I have a relapse then I can't... walk, talk, bathe or feed myself or use my hands period... Not approved for disability?... IF I relapse though I can't work at all. IF I relapse I can't go out alone.I can't wear heels. (lol) IF i relapse I can't exercise! IF I relapse... I can't be 18,19, or 40! Ugghhhh I hate this life of IFs but the world says okay... that's IF you have a relapse. You look fine to me. Are you having one right now? No? Okay well we can't go off an IF. IF you stress too much. IF you get too tired. IF you can't do things for yourself. Well you can right now right? Yeah... we can't help IFs. Do you sometimes feel like your first name is IF and your last name is MS? The world often says well sorry Mr. / Mrs. MS we can't help you... Don't get discouraged. 

Disability  UGGGHHHHH!!!!

How many of us MS warriors can understand the frustration of trying to get disability benefits??? Doesn't t it just make you want to scream!!! Sure we look fine or in most of our cases "fabulous" but have one bad day, the smallest amount of stress and it's hello MRIs, solumedrol, wheelchair and physical therapy, sometimes even more than physical therapy, here we come(!!), for months or even years at a time; sometimes resulting in permanent disability.
I know I've wondered myself, "can I just catch a break and get approved so I can take it easy? So I don't end up having that one relapse that leaves me totally handicapped. Is this really too much to ask?..." Well guys, to them it is too much to ask simply because so many people abuse the system. Though we know that we may look fine one day and could possibly wake up and not be able to do anything for ourselves the next.  The people who work for the disability office do not understand and couldn't care less... All hope is not loss. If you are trying to get disability benefits never give up!! Know the difference between SSI (Supplemental Security Income) and SSD (Social Security Disability) you will probably be applying for both. Be sure to keep documentation of every single thing that happens to you. If you go to primed for a cold... It's because of your MS. You stump your toe and sprang it? it's your MS. Your fatigue is unbearable?  Of course it's because of your MS. Document EVERYTHING. Have your doctors document everything! When fighting this fight, documentation is everything. And most of all do not work. -at all- I know everyone has bills but if you can save up before applying while you can still work, that would be a good idea. (I would suggest saving enough to take care of yourself for at lease a year or two and knowing when a year or two before you are unable to work is hard to gauge but I think people should always save in general. You never know what life has up her sleeve.) The process is long , hard and frustrating and you have to be prepared for it if you can. keep track of your money too; from the time you apply forward. I mean really keep track, write it down. Do whatever you have to do to keep track of your money. SSI is usually temporary but they will want to know where every single penny went during your process. They want to know how you paid all your bills and which pennies paid them. (lol) I know memory is an issue for a lot of us... They don't care about that either. The interviewers are very heartless (which I guess they have to be) and they will MAKE you give them an answer. Most of all (over the last most of all lol) don't let them stress you too much as we all know, stress worsens symptoms. From my own experience: When I finished my interview, I had more noticeable tingling, numbness and Spasticity. But gues what? They couldn't see that either and wouldn't have care anyway. (lol). Well I really hope this helps someone.  Don't give up!!!!

:::I am not a social security worker or professional. I'm just sharing my experiences hoping to help other through them. If you are a professional or have some advice yourself, please comment below:::

ALSO: Check your local hospital for nonprofit organizations who assist with helping patients get disability and financial assistance with bills
-Don't be ashamed or too prideful to tell people that your struggling; you never know who God put in your path to bless you. :)

Keep S’myelin and stay Fabulous!

MS Care Bag

MS CARE BAG! Yes you need one...

Hello all of you Fabulous MS warriors. I haven’t posted in a while because of a SERIOUS relapse I just had its been about a month and  a half and I am still trying to recover. This was the worst relapse I have ever had requiring me to spend about a week in the hospital and transfer to UAB Hospital for further observation. (they feared I had a stroke) I could not walk, talk , swallow, had numbness and tingling, facial paralysis and chronic crying. While I was lying in the hospital with nothing to do but think, I thought, “I sure wish I had some of my own things packed in case of a time like this”. Which has led to this post! After this experience, I believe everyone needs a MS care bag. (especially us females) Well first thing’s first, you need a bag. I would choose a cute one. Maybe your favorite color, so you feel positive when you see it. Try walmart or target, Ross if there is one in your city. At the time of the relapse I had my cycle. So #1 on my list is Pads!

1. Pads or sanitary napkins (the pads in the hospital weren’t so good) or tampons

2. panties

3. your favorite bath soap or body wash

4. deodorant

5. snacks : jello, granola bars etc. (you can probably pack those IF you relapse so they don’t spoil

6. Hair ties, brush, comb

7. comfortable change of clothes, shoes, socks

8. blanket

9. tooth brush and paste

10. your favorite lotion

11. entertainment :books, ipad, music

12. you may not be able to  pack it but A Loved One

These are a few of the things I felt I needed. I’m sure you can think of a million other things. if so comment with the things you feel you need. Someone may need the same thing.

It Girl Files embrace your crooked smile

National MS Society

Pin Up 4 A Cure! Love this Sexy twist on health awareness

UPDATE: Can you say healing! severe facial paralysis and numbness (far left) A little better (middle) Im Back!!! (right)

Fabulous Friday

It's Fabulous Friday!!

It’s Fabulous Friday!! What have you done fabulous this week. What do you plan to do today, this weekend or next week?

• This week, I taught my first exotic chair class!! It’s crazy 2 ½ months ago I couldn't walk; now I’m teaching fitness classes. If that’s not fabulous I don’t know what is!! It’s a blessing to be functioning again. Born To Dance and Fitness Studio

World MS Day

Don't forget forget Wednesday is World MS Day! and guess what what!? The focus is Young people!! (Alabama- Mississippi chapter) So wear Orange! Be young and wild and free!!!   

You can inspire the world by participating in World MS Day's What's Your Motto Campaign   All you have to do is go to the previous link and follow the steps! Here's mine!

Here's my entry to What's your motto

You can also support by becoming an activist! Be An Activist! As activists, we draw on our personal experiences-on what we passionately believe needs to change-and devote that energy toward supporting policies and programs that move us toward our common goal of a world free of multiple sclerosis.

Here’s how:

1.       Follow and engage with the MS Activist Blog at: www.MSactivist.blogspot.com
2.       Join the Action Alert Network to stay informed about legislation that matters at: www.nationalMSsociety.org/MSActivist
3.        Tell people about how MS has impacted your life-and how we can cooperate to change things for the better-in person, on social media, in a letter to your local editor, and more!

Okay so it’s memorial day weekend and I know you all have some BIG plans! What are they? Tell me how you are going to be Fabulous With MS this week!! 

The National MS Society

FABULOUS FRIDAY!!

It's Fabulous Friday! Comment and tell us what you will do fabulous today, this weekend, or this week! You never know who your "fabulousness" may encourage. :)

Make me Chic

I'll start first. Well I will tell you what I did Fabulous this past week first. I had the honor of giving away a scholarship on behalf of The National MS Society ! This was such an honor.

 Fabulous for this weekend, I plan to hang out with some girlfriends. Who knows what we will get in to. Maybe we will hit the club. Oh and I will wear heels!!

 

Something Fabulous for the upcoming week is I plan to attend the Universoul Circus!! It seldom comes to my city so this will be a real treat!

Universoul Circus!

 

Your turn!! What will you do Fabulous!?

It's Fabulous Friday!!! Comment and tell us how you will Live the Fabulous Life With MS this weekend/week!!!

Fabulous Friday!!!

Okay everyone; this is the first Fabulous Friday! What will you do fabulous today, this weekend or sometime this week? We really want to hear all about it.

 I’ll start first. Some people think that once they get diagnosed, life as they know it is over. So, as some of you may know; I used to dance.

 Today I am going to Born to Dance and Fitness Studio’s Girls night out dance, chair and vertical class! How fabulous is that!! I thought I told ya’ll; MS won’t stop my groove!

How Will you be Fabulous?!

Born To Dance and Fitness Studio

My Facebook

We're Not Drunk We Have MS

National MS Society

Talk To Alabama

Who Says a Cane can't be Fashionably Fabulous

So. I have decided to make walking canes, wheel chairs and walking assistance tools Fabulous!

 I first thought of this during my last relapse. Before the relapse, I planned a trip to Miami, Florida. I have never been to Miami and had already bought my plane ticket so; I was determined to get to Miami; relapse or no relapse. EVEN IF IT MEANT LIMPING IN A BIKINI, WITH A CANE, ON THE BEACH! (lol)

 (I've learned, you have to laugh at yourself when you have MS) 

 I was blessed to be well enough to walk without assistance before the trip but it got me thinking. If I had to use a cane; what kind would I use? Would I use those plain black ones, or those silver ones, the wooden ones? Would I use a Walker? During the relapse unfortunately I had to be pushed in a wheelchair part of the time but I thought; if I needed a wheelchair permanently, would I use this same old boring one? The answer to these questions was heck no! I still need to be “Fab”. So I researched canes on Amazon and behold bejeweled, animal print, and colorful canes!

Fabulous Walking Cane!

Check these out that I found on Google

 I could have been fabulous with a cane, on the beach, in a bikini if need be!  Believe it or not there are a few celebrities who have used canes as accessories. Here is a photo of Rihanna with a cane and on the right Brooke Shields!

Brooke Shields

 She even has a music video “You Da One” where she has a cane. Back in the day pimps use to have canes a part of their outfit like they were watches or something!

Here's the video "You Da One" before watching :Remember: it's BAD Gal Ri Ri lol

I researched bejeweled wheelchairs unfortunately, I did not find any. However! That does not mean we can’t make them exist! So, I have a love affair with hot glue guns and hot glue guns love rhinestones! If you want to jazz up your wheelchair or customize your own cane or walker instead of buying one already bejeweled; just get some rhinestones from Wal-Mart or Amazon Rhinestones , a hot glue gun also from Walmart or a dollar store, plug it up and get to work!

 It’s fun and inexpensive. You don’t have to stop at rhinestones either! What about ribbon, fabric, studs or buttons? The sky is the limit. Go where ever your imagination takes you! If you have fine motor skill problems with your hands; I suggest you get a friend or family member help you with your project though. I would hate if you burned yourselves.

Last but not least. Do not be ashamed of your MS! Do not ashamed if you need assistance! Remember you have The Fabulous Life With MS! MS does not have you! 

PS: I want to start some thing called Fabulous Friday! Every Friday I would like you all to comment on any post and tell me and our brothers and sisters in MS how you will be Fabulous the weekend or the following week. Even if you don't have MS and you just support the people fighting it! Tell us all about it! :)

My Facebook :) <3

National MS Society Facebook AL- MS Chapter

We're Not Dunk We Have MS

Share Care

Online Support Group/Community

You’ll be surprised what you can do with your RIGHT HAND if you’re LEFT HANDED and your LEFT HAND if you’re RIGHT HANDED!!!

…Don’t give up and don’t take “it’s not working right” for an answer

Okay so, I had a recently had a relapse and could not use my right side and of course I am right handed. So, I could barely use silverware without dropping food everywhere, couldn't brush my teeth or my hair, you can just imagine the other things I couldn't do. (lol) But dear God the worst part… I couldn't do my makeup!!! 

This relapse lasted a while. (I still have not fully recovered) One day I just got fed up! I was tired of looking “sick” and I decided, “I’m doing my makeup today!” and I did it entirely with my left hand!! It was then that I realized that I could teach myself to be ambidextrous! I practiced my makeup with my left hand daily. Though it wasn't my best work the first couple times; it was decent. I taught myself to write with my left hand (sloppy but legible), brush my teeth with my left hand, eat and those other things I mentioned that you imagine.

My point is, never take no for an answer. You have MS. Don’t let MS have you. The human body is amazing! Don’t underestimate what it is capable of. Though you may have plaque on your brain, my doctor informed me that in many cases, your body will figure out another way of communicating what you are trying to do. I Know MS affects everyone differently but for those of you who have trouble with your hands and such, this is for you.

Some of the things I did to try to teach myself to be ambidextrous were writing my alphabet, doing more things with my left hand, and I plan to buy one of those tracing alphabet and shapes books for kids. Basically everything I did to learn how to use my hand I use naturally.

Now I can do a lot of things with my left hand that I couldn't do before! Give it a try and comment below! Tell me about your success! 

Ambidextrous

MyMS.org

We're not drunk We Have MS

My Facebook :)

Neurologist in Montgomery AL