Tag Archives: National MS Society

Friends…How many of us have them.

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Friends…How many of us have them.

Friends, ones we can depend on…before we go any further, let’s be friends!! Do y’all know that song by Whodini? If not, Friends <<<Get you some!

I’ve spoken with so many MSers about how they lost family and friends after being diagnosed. Now some of the folks they lost needed to be lost and never again found. Then there were other situations where the MSer simply didn’t do their part. Look, Y’all know I get it. You don’t want to feel like a burden. Well guess what? It’s burdensome for your friends to wonder if you are getting out enough. If you might be depressed because you don’t hang with them anymore. Did they do something to offend or hurt you. It’s burdensome for your friends to wonder if you are just not interested in a friendship with them anymore. DO YOUR PART!! What does that mean? Welp. I’m here to tell you.

  1. When a friend asks you to join them for, let’s just say, tea. Now for us we aren’t just agreeing to the tea drinking. We are agreeing to all those things like showering, getting dressed, doing our hair and make-up and then recovering from the getting ready for this outing. We then have to assess will we have anything left to drive to said spot for this tea drinking, engage in witty banter whilst drinking this tea, and drive home and handle whatever is waiting for us there. All of this just  for…
    LiddAy8i4

    Tea anyone?

    See I get it. But here’s a solution. Impromptu is hard for us. So tell that friend you’d love to and ask if they can pick you up. And please save the guilt of “Oh that just seems like so much.” If it is, they’ll tell you and you all can schedule for a time when they can drive.. I assure you your friends don’t mind. Or maybe the rescheduled time will be a time when you can conquer all and proclaim “LET ME DRINK TEA BECAUSE MS AIN’T GOT SHIT ON ME!!”

  2. Next. Your friends have lives that don’t include you or your disease and that is just fine!! Get over yourself. No one’s life should include all of you all the time. So if you are looking from the outside in on all the great things your friend or friends are doing that don’t include you…get a life. Harsh huhn? I know. When you have a disease that is just set on taking your life’s activities from you, it’s hard to know how to get a life. Look. A life doesn’t mean you are out zip lining, skiing, bike riding, etc. or maybe it does. But if it doesn’t, it doesn’t mean you don’t have a life. Your life could be reading a great book, watching a movie, or sleeping. Sleeping is essential…oh and some days I look forward to it. Your life can be going to what seems like an endless amount of doctor’s appointments. This is going to sound so Iyanla Vanzant Belovedness, but find a way to even make those acceptable and possibly enjoyable. I actually had to learn this. I do things like take candy to the staff. (Which opens the door to some pretty funny conversation.) My point is, if you don’t have a life…don’t blame it on your friends or MS. Change your perspective. Because hating your life and everyone who isn’t helping you get a life…aintnobodygottimeforthat

 

3. Friends that don’t call as much as they used to. Call them!! And when you do, don’t have the expectation that the call will be a long one. Don’t get all caught in your feelings that your friend isn’t asking you about all the treatments and issues you are having or have had. No one (including you) wants to talk about MS and illness all the time. And if you need to talk about it, know who to call. Know your friends. I have friends that I know I can call and be a big arse baby if I want to be.(well one happens to be my little sister so jackpot for me.) Then I have friends that I can call and we will cut up about everything under the sun, but we don’t really talk about my MS much or their ailments either. But booooy do we talk about folks. I mean this political cycle alone has given us ammunition for decades to come. The GOP side looks like something from the Seven Dwarfs…dwarfs of menopause

Now where was I? Oh yeah. Just call, talk, and enjoy. If they don’t answer, leave a message. If they never call back…well Bye! Move on. Were y’all friends anyway? Or just acquaintances that were convenient for a time and now time’s up. Time expires on friendships too. Doesn’t mean they were bad friends or that you were, just means time’s up.

4. african-american-woman-clip-art-136153 <<<sometimes this is what I envision my friends and I look like when we are hanging out and sometimes this is exactly what it looks like. Then there are times when it looks like thisgirls-hanging-out-10467128  Just us hanging out at someone’s house eating cookies, talking, watching the kids run around and enjoying what is us. On these days, I have usually been driven to whatever the destination is. My friends understand that I may or may not be social. But in order for my friends to get accustomed to all that is me I have to be honest with them about what that is. I don’t pretend to be ok when I’m not. I ask for help when I need it. I tell them, don’t stop inviting me to <insert event> I’ll make one eventually. And they don’t stop inviting me. I am honest about why I didn’t attend an event. Lately I’ve had to say “I’m not going to make it because my legs ain’t loyal.” To this they’ll say ok next time or I’ll come get you. Either way, I did my part and they did theirs.

 

Friendships take work. Most of that work is honesty and communication. If you do your part…You’ll still have MS, you’ll have a life and you might just have a few friends.

clipmickeygang

Remember everyone has something. Don’t let your something rob you of everything. Now excuse me while I call around and see who wants to meet me for tacos…

Bye!

 

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Tecfidera, T-Cells and Copaxone…Oh My!!

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Tecfidera, T-Cells and Copaxone…Oh My!!

Oh yeah I was supposed to be all back and in the mix with y’all but *sighs* life happened…again. So where did we leave off. Oh I was still on Tecfidera. I sat in 97 degree heat over the summer and did pretty well (Although I don’t suggest it. I paid dearly but hey YOLO!! Yeah right I was in bed for a week after. We’ll talk about that later). Sooooo My Tecfidera journey ended with a call from the nurse that said “Don’t take another dose.” Yeah my T-cells went on vacation…or were evicted by Tecfidera. Because I have the greatest neurologist ever (Dr. Guy Buckle) I was monitored properly, removed from Tecfidera and called in to discuss other options. One of those options was Copaxone.

needles needles needles

Needles!!! Needles!!! NEEDLES!!

But before we go there let’s rewind and talk about Tecfidera.

Oh it was a wonderful blocker of all things MS. My lover must have found another, I thought. He gave me very few problems. I was at softball games, cheering, being a softball mom and loving every minute of it. I was living it up!! I would forget a dose every now and then, but for the most part my Tecfidera journey was non eventful. I didn’t get any new lesions, I had no relapses and last MRI showed no active lesions so I was loving this. I still had the fatigue of a million years of no rest, but hey you can’t expect a stalker lover to just give all the way up. Wouldn’t be natural. Then my lover  Michael EalyED my Morris Chestnut. If you have no idea what I’m talking about you must have missed The Perfect Guy.

The Perfect Guy

Y’all have got to see this movie. I mean it’s not in theaters anymore, but go buy it. Why? Well because the folks in this movie are just beautiful. Oh and it’s pretty good movie too. Anyway, Tecfidera kicked my T-cells arse and well I had to leave him alone. Tecfidera came in and basically turned off my body’s security system. Ole sneaky bastard. So I had to let him go. Good thing is I had a back up generator and my T-cells are fine now. My stalker lover hasn’t found out I am unarmed and hasn’t given me any real issues. But now I am faced with one of my biggest fears…needles. Now in case y’all don’t know, I am terrified of them. The pain is not the issue (I gave birth with no drugs. I can handle pain). The issue is seeing that needle pierce my skin!!

So Copaxone was up next and was chosen as the best course of action at this point. At least that’s what my neurologist was telling me. When he mentioned Copaxone I was like…WHET

But in the end I started Copaxone about 3 weeks ago and my next post will tell you how it’s going. Just know that all hands are on deck for this heah. My husband, children, friends, perfect strangers. Speaking of perfect, let me give y’all a peak at The Perfect Guy . Gwon pick it up. Michael Ealy and Morris Chestnut in the same movie… on the same screen?!!! *Swoons*

 

 

I hope you dance

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MS gives you so many reasons to shed a tear. These past couple of weeks it seemed to give me more than my share. But that girl I met in third grade challenged me to optimism. And I will not lose a challenge. Unless you challenge me to set myself on fire or be choked unconscious…yeah there are actually these kinds of challenges and folks more than happy to accept them. I actually watched one where two girls allowed two boys to basically choke them out or assist with them choking themselves out… hell I don’t know what I witnessed, but I  watched and thought their parents have to feel

Prince. Doves Cry

 

But back to my optimism challenge. (This is why my lover can’t keep me down long. I stray so easily). This week the pain, fatigue, brain fog, medications seemed to overwhelm me. Did I say pain? Maybe it was because our house was full of activity with back to school events and I really felt ill equipped to attack any of it. So as I slowly started to sink into my own private pity party I remembered my challenge. Every time a negative thought entered my mind I came up with a word to change the direction. The word was dolphin. Don’t ask me why dolphin. I have no idea *shrugs* But thinking dolphin did not stop the pain, medications, etc. I needed to physically do something for that. Then I saw this commercial

Yes!!! That is it!! I will what I want. Now that can be taken at least a couple of ways. For me. My will is what will drive me. So what did I do. I danced!! First I just did the chair/bed dance. You know where you are giving it all you got sitting in the bed or chair.

chair dance

And I don’t know if it was the music or the movement, but my spirits were lifted. The circumstance was the same. I still had all the things I had before I started to flash dance it, but my will, my spirit was saying “Get it girl!!” And the next day I was listening to music and cutting a jig. Every now and again I had to say dolphin because thoughts like “You will pay for this later.” and “You’re gonna fall. Sit down!.” would surface DOLPHIN DOLPHIN. I  am  living  my  life  in  motion!! <<<(Stolen from the woman below)

misty2n-4

Misty Copeland thanks for that commercial. It came right on time and for all of you out there…

I HOPE YOU DANCE

“Promise me you’ll give faith a fighting chance…” Can y’all promise me and Lee Ann that? Now

READY. SET.  DANCE

Ready Set Dance

MS moments

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So my lover thinks it’s fun to do things like hide my car from me. You know, you go inside the store and you concentrate real hard to do things like oh I don’t know walk. So I go into a store, grab a buggie as soon as I can so I can lean and then I shop. This is when my lover decides today would be a good day to play hide the car. Yep I check out, walk outside, and well panic sets in as I now realize I have no earthly idea where my car is. This is what I see.

parking lot

 

Somewhere my lover is doing this

Snoopy

 

So as I try to run through my brain to search for any recollection of where this vehicle could be, the heat begins to work on me. SO what do I do? Head back into the store’s Starbucks and have a Venti, Oprah Chai on Ice. I noticed I can out think my lover when I relax and don’t pay him no mind. So as I sip my Oprah Chai  that she created just for me and moments like this. Y’all know Oprah and I are friends right. She took me to Australia and everything!! So as I sit, sip and reminisce about Russell Crowe, Jay-Z, Hugh Jackman and Bono (These are a few people Oprah shared with me) I start to relax and remember. But then my legs are not quite ready to cooperate so I continue to sit as my lover tries to ruin a perfectly good afternoon of shopping. Hpmf. When will he learn. I will not be defeated!!

NO defeat

Because I am soooooooo

Team_Jacob_poster

I’ve been waiting for just the right post to include my werewolf love!! Well this is it. This man right here is a good enough reason to change your species. Now where was I? Oh yeah finding my car. I found it, loaded the spoils of my shopping day and then decided to go make an appointment with a new Primary Care physician. Oh how this was a huge mistake. We all know that as MSers we have to limit how many activities in which we participate in a day or disaster is sure to strike.

Sooooo I went to the address I thought I remembered correctly. Why was I counting on my memory? Because I left the paper that I had written the address on at home. Duh!!! So I went to building 1800 in the medical complex and just looked for her name on the directory. (I’m so smart) except I was researching two doctors…what were their names now? Uggggghhhh OK one name looks familiar so I head to suite 120. Score!! She’s an internal medicine doctor and the office looks pretty nice. I start to make my appointment, but then make sure I ask my questions first. What hospitals does Dr. So and So have privileges? The answer was none. Huhn. How can you be a physician and not have privileges at any hospital? What if I’m admitted for something? Was my next question. You can see the doctors that are on call. Huhn? Ummmm no thank you. So I left the building and decided I should utilize the google on my smartphone. SCORE!!! Found the initial doctor I was looking for!!!

Goal

^^^^In Honor of World Cup.

So I headed to building 1700  she was not there, but they thought she may have moved to building 1600…wasn’t there either. As a matter of fact she had moved her offices across town!!! Oh I was fading. I was exhausted!! Then a little lady told me of a doctor right next door. I went in, asked the pertinent questions, and tried to schedule an appointment. Nope booked all the way until December!! Ugggggh Then the nice receptionist whispers “If you can be seen today and finish your paperwork quickly I’ll squeeze you in.” I was seen that day and today I got all my test results back. Didn’t I tell you I was not to be defeated!! Neither are you!!!

NO Defeat 2

What were my test results? Let’s just say I still have work to do, but I will not give up! I just don’t have it in me. I apparently have no Vitamin D either…

Defeat is never an option when you have…FAVOR!! To God Goes the Glory!! 

 

 

 

 

Day 1 Tecfidera

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Day 1 Tecfidera

So yeah yesterday was my first day taking Tecfidera. Now let me tell you I had grave concern about starting this medication. Oh and not for the reasons you might think. It was vanity!! Pure unadulterated vanity. The side effect that scared me most was not the flushing, the lowering of white blood cell count, the possibility of being more susceptible to infections…nope it was the possibility of having diarrhea. Will I be having a romantic moment with my husband and….

OH THE HORROR!!!

I know. How vain can one be? You have no idea!!

So how did I fair serving my lover with yet another restraining order? Not too bad. I did as instructed…I DID NOT TAKE THE MEDICATION ON AN EMPTY STOMACH. I picked up the pill out of the pill box provided by “Tecfidera World” and noticed it rattles. What in the world is in this little pill. Oh how I had to fight the urge to open it up and peek in. The pill was light (in weight) and rattling. So strange to me. But I digress. I took the pill and it was a little difficult for me to swallow, but that has nothing to do with the pill, but everything to do with this lover of mine trying to fight in anyway he can. Nope I will not be defeated!! I swallowed that rattling pill and the restraining order was served.

Yep I was a bundle of nerves!! I stayed home and close to the bathroom. Then I got the hot head. I mean literally my head was hot. My scalp was hot and then my ears and then my cheeks. FLUSHING!! This was the flushing everyone was talking about. Oh it made it to my arms and then the itching began. But none of this was terribly bothersome. It only lasted 30 minutes at the most…and that was it. The first pill was as exciting as it got. The second pill I don’t recall any side effects. I took it right before I was going to sleep. I woke up a little…off but hey for every day this year I have awakened lethargic and off. So that wasn’t attributed to Tecfidera. It was my lover saying that he will not go off gently into the night…Hmpf I didn’t expect him to!! I expect day 2 to go pretty much the same way. If it doesn’t, you know I will surely let you know. The road to Tecfidera hasn’t been a crystal stair, but hey maybe just maybe now that I have arrived stairs won’t be so daunting!

stairs

 

 

 

 

The road to Tecfidera Ain’t been no Crystal stair

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Mother to Son

BY LANGSTON HUGHES

Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor—
Bare.
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
’Cause you finds it’s kinder hard.
Don’t you fall now—
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.
So yeah the road to Tecfidera ain’t been no crystal stair. I’ve been on Rebif and Tysabri. Didn’t do well with Rebif. Did great with Tysabri, but the threat of a fatal brain infection dictated I stop with that treatment. If you don’t know how I was introduced to MS take a look here https://themsmistress.com/2014/01/31/the-mistress-meets-her-ms/
So after being off any medications for about a year and a half I had a relapse. You can read about that here https://themsmistress.com/2014/04/20/you-me-and-he-what-we-gonna-do-baby/ Did the steroid thing and decided on Tecfidera after speaking with my neurologist, husband, and brother.
What I will say is once you get the prescription call this number 1-800-456-2255. That is the number to MS Active Source. Why do I say contact them first? Because it will save you a whole heap of aggravation and such. It took me over a month to get my medication delivered. That delay is not necessary. This post will just tell you how things will work.
  1. You will get a form from your doctor’s office once you make the decision to begin Tecfidera. This will come only after all the necessary blood work has been done and you are approved as an acceptable candidate. If this form is mailed to you you will have to fill it out and fax it back to your doctor’s office. They will then fax the form and prescription to “THE WORLD OF TECFIDERA”
  2. Call the number above and ensure they have your information. Once they have it you will receive this in the mail.
Welcome to Tecfidera

Welcome to Tecfidera

This is a pill holder and information on the medication.

When you receive this in the mail go ahead and call and ask them to send you the starter pack. This way you aren’t waiting on insurance approval and the such. I received insurance approval and thought my meds were on the way and then called the pharmacy that was due to send them and was told “Oh we ended our contract with your insurance carrier and won’t be sending it.” This is after calling this pharmacy for over a month to find out the issue. The pharmacy was caremark…ugggh!! Oh did I say they had just called 4 days prior for me to pay my $17.00 copay? double uggghhhhh.  So I called the new pharmacy and after 15 minutes on the phone they said there was a $600 copay. Say what nah? How in the hell…You know what nevamind. I hung up and called MS Active Source at 1-800-456-2255They sent me out a 30 day starter pack for free and said they would handle the insurance company and such as the new pharmacy probably didn’t have all of my insurance paperwork yet. They instructed me to just call them from this point forward. So instead of you going through all of that…Yeah just call them from the beginning get your 30 days free and let them handle all the paperwork and aggravation. The last thing you need right now is the aggravation.

When your meds arrive they look like this.

Welcome Tecfidera

You are gonna start with the 120 mg pills first 2x a day. (unless you were told something different). I just put them in the little pill organizer so I know what’s what. I think this is to slowly get your body adjusted to the new meds.

Welp that’s where it ends for now. I just took my first dose and well so far so good. I’ll post in a few days about how it’s going.

Hope these few little tidbits help your road to Tecfidera. The unknown can be sooo daunting.

MRI (Makes me Really Insane)

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So yeah I told y’all I would tell you about me and Mr. MRI. *Takes deep breath*

So in 2010 I was diagnosed with MS. This is when I was introduced to my lover’s partner in crime.  So yeah I was not happy about the not being able to walk thing and was in my superhero mode. I will get these roids and leap tall buildings in a single bound.

Supergirl

I handled the needle in my back to withdraw spinal fluid with no problem. (Well very little problem) Yep I am superwoman!! I can handle anything…Then my kryptonite was introduced to me.

What the Lex Luther is this heah?

MRI

So I’m in the hospital and they tell me I’m going to have an MRI. OK no problem. I am ready for anything, because after all I have got to get a firm diagnosis to ensure the treatment is exactly what I need. I shall walk again (I said this in my head and it was in my superhero voice). Now picture this. I am rolled into the room where the torture chamber is kept. I look at the contraption and think. Hmmmm not so bad. No needles. So I’m helped onto the table and I am given a blanket to cover up with and a pillow is placed under my knees. Wow this is gonna be fine. I’ll sleep all the way through this. The nurse places a “squeezy” thing in my hand and says “If you need anything just squeeze this.” Why sure. But what could I need? Mai Tai? Mojito? Margarita? I was handed ear plugs so the noise of my brain being scanned wouldn’t bother me. So sweet. And then this nice gentleman that had made me so comfortable turned into the devil’s spawn!!!  As I lay ear plugs in, eyes closed, holding my “squeezy”thing he locked my head in!!! This was some Hannibal Lecter mess!!! I haven’t feasted on anyone’s kidneys with a side of favre beans. What the hell?!!

Hannibal Lecter

 

Why am I being…wait this thing is going INTO this tube of darkness. Where will I get oxygen? What happens if someone comes in and kills this devil spawn? How will I get the hell outta here? Wait how long will I be in here? I can’t breathe!!! Why is my head locked in? I can hear the noise!! Is somebody gonna bring me oxygen? Can’t they see the fear on those scans they have to be looking at? Nope, because the devil’s spawn is dead and I am trapped in here with no air!! I want out!!!! Then I remembered the “squeezy” thing and I squeezed the hell out of it as I screamed “I can’t breathe!!!” (Which clearly wasn’t the case considering I was screaming like a woman giving birth to a full grown Shaquille O’Neal…Or hell an infant Shaquille O’Neal) Is O’Neal an Irish name? Wait back to the torture chamber. So the devil’s spawn came running in and released me from this contraption as he asked what was wrong. Are you shitting me? What’s wrong? Yo arse don’ locked me up in this Hannibal mobile and you want to know what’s wrong?

“I can’t stay in there!!”

“Oh I thought you said you weren’t claustrophobic.”

Now right about here if I was in my able body I woulda

Too the moon Alice

Dah hell you taumbought claustrophobia when you don’ locked me in this torture chamber?

“I can’t stay in there?!!!”

“OK we will get you something.”

Now I’m thinking what is he gonna get me? Who is we? Then the devil spawn’s friend emerges with needles and such. She was quick, and thorough…I was fading before I realized what was going on. They had me. Superwoman has been thwarted!! The Kryptonite would win this day.

supergirl-death

 

 

I woke up in my hospital room with a tray of mystery meat and green jello…and next to me was my husband watching TV and telling me that he had food that would be to my liking.

Chicken and Waffles

Thank you Miss Glady’s!!

Gladys Knight

And that is how this superwoman was defeated and driven insane…temporarily.