Tag Archives: Multiple Sclerosis

Whet the democracy????

Standard
Whet the democracy????

The “Whet” is not a spelling error. This election cycle is filled with so much insanity that a Bish Whet is in order.

bish-whet-bish

Let me just say that I love this little baby. He is just giving all the cuteness. Now about this train wreck of Whetmocracy. On the republican side we have narrowed it down from umpteen million candidates by giving the stage to the most vile, racist, sexist, showman I have seen in a political run for the presidency in my lifetime. We have allowed the things that are really plaguing this country to be upstaged by a baddest man hit my hand contest and it is reprehensible. I want to say America is better than this, but is it really? A country as rich as this and before the Affordable Care Act I couldn’t get insurance to help cover my medical expenses. This country which has sent men to the moon, couldn’t figure out a way to ensure all of its citizens had access to healthcare? Well anyway back to Ringling Brothers and the circus that should have never been.

Y’all look I don’t care who anyone votes for, but I do expect folks to make their decisions based on something other that jibber jabber my hands are small but my penis is bigger than yours there will be a wall and mass deportations and ion know how imma pay for it, well Mexicocalifragilisticexpiallidocious it will be great and you’re a loser. I thought a spoon full of sugar helped the bullshit go down. Ain’t nothing sweet about any of this…wait that was medicine. Mary Poppins would never say bullshit.

1453240480-4484a7cd-7d65-4344-a363-a8fed85f7487

I can’t even have my kids watch these debates. They are so interested in this process and I want them to see the debates on both sides. So far they have seen the Democrat side… There are grown men who want to lead a nation basically trying to out bully one another. Really? I mean just a few years ago we had grown men  who debated about their political and policy differences on how to lead this country and what they stood for morally. We had huge rallies where all were accepted and allowed to listen to what any candidate had to say even if they disagreed and hollered out that disagreement. The presidential candidates would respond with how they would address whatever problem was shouted out or they would ignore the outburst and continue with their stump speech. Why? Because the men of the past elections recognized that this is indeed a country that allows its citizens to check them when they are vying to represent them. They however never allowed for or commanded other citizens to harm anyone because of differences. As a matter of fact I would bet that, Republican or Democrat, none of our former candidates would have allowed for anyone to be attacked on their watch, at their rally, on their command. As potential leaders of this country they understood that they are to set examples for what is and is not acceptable. They were going to disagree without being disagreeable.

These are all the the people who were in the running to be leader of the free world

2016-presidential-candidates

Somewhere along the way we got so sick of the establishment and status quo so  we decided we would go with loud, disrespectful, racist, sexist, and just 50 shades of orange and wrong. I don’t want anyone representing this country who is not compassionate enough to ensure that he or she will know they are running this country appropriately by what he or she does for the least of us. In order to do that, he or she has to be willing to listen to the woes and sorrows of the disenfranchised. What does “Make America great again” really mean for the candidate who loves to shout it? When was America not great for the white, male, and rich?

Welp this heah post had not a thing to do with MS…or did it? Our lives are so much more than our MS. But having MS does have us look at the world a little different. I think more about health legislation. I think more about MS patients who are homeless. I think more about caregivers. I think more about people who really feel like they have no voice, no support and who feel they are as invisible as our disease is. I want a leader who accepts, fights for, and speaks for us all. In my opinion, if you do this for the least of us you will do this for all of us.

 

 

Advertisements

Friends…How many of us have them.

Standard
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!

 

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

Standard
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

Standard

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

Standard

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!! 

 

 

 

 

MS shoes

Standard

Walk a mile in my shoes…hell I can’t even walk a mile in my shoes soooo. As one with an invisible disease it can get frustrating sometimes when you KNOW people just don’t damn get it. No I can’t go to a concert with you in July that is going to be outside in 95 degree weather for 2 hours. Yes I have to sit down right now!! And although I do not have a handicapped tag or placard if I did I would not be explaining to some self righteous asshole why I am parking in the handicapped spot. I hear a lot of  MSers who feel so embarrassed and guilty about parking in these spots and the looks  and comments they get. Let me tell you this if you are one suffering from an invisible illness, you MUST find a way not to give two damns about how someone else views you or your needs. Now this not giving a damn can also expend to family and friends if necessary. If you need to sit down. Sit. If you need to sleep for 15 hours…sleep. Kay? Kay. The only one in your body is you. And if you neglect or abuse it, because of what you think others perceive, guess what? YOU are the one paying for it!! Now. Go grab a family member, friend, stranger, somebody and show them this post. I will attempt to shed a little light. But understand very few people who do not experience a disease like ours will ever fully understand. They just won’t. Change your expectation in that regard.

Now all non-MSers read and watch. And the next time you think “Aww it ain’t that bad. She/he looks fine.” Just remember we’re probably thinking “He/She can’t be this ignorant. He/She looks so intelligent.” *giggles*

 

Well sure you see me walking in these shoes

Stilletos

But do you know on the inside I am feeling like I am ALWAYS walking in these

Flipper Heels Flippers

MS is called an invisible disease because most people with MS don’t have any signs of being sick. We don’t have a deformity that you can readily identify. Although on the outside we look like

Stay-energetic

We feel like

exhausted

I recently came across a video that may give you more insight than the pictures I’ve shown. Take a look

 

The Quest of Tecfidera

Standard

Sorry you haven’t heard from me and my world of Tecfidera in about a week. This MS Fatigue and random pain has had me a little ummmm eeeeer PISSED OFF!! I mean come on now can a girl get a break? This lover of mine is not happy about my attempting to kick him to the curb and he is being very spiteful. I decided that yeah I’m not going to let him push me around. I have my provigil for the fatigue and I plan to use it. In case you don’t know what provigil is, it is just a medication that gives you wings…Yeah it’s the red bull of pills. Now provigil also helps with ADHD, depression and a whole host of other things that I had no idea about. Anyway this post is about Tecfidera and how I have done over the past week with the 240mg twice a day.

Welp no problems at all. No stomach issues (I still have no appetite), no more flushing or itching, my lady parts are back to their normal temperature, and I haven’t forgotten again to take not one dose. So the thrill is gone…no more excitement to inform you of. Whatever shall we talk about now? Hmmmmm. I did have interesting conversations with two of my friends who didn’t even want to read my blog because they didn’t want to know all that I go through. Have any of you ever thought about that? The fact that this disease can be so scary for the people that care about you that they essentially hide from it? I think I’ll ask a few of our fellow MSers about this as well as others that suffer from chronic illnesses. Since this post isn’t that long and there was nothing exciting to report in the world of Tecfidera and the MS Mistress, I’ll leave you with this video.

Warning: Grab a tissue.

Because of this right here Bruno Mars can no longer do any wrong as far as I’m concerned. AMAZING!!