Tag Archives: MS

Whet the democracy????

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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.

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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.

 

 

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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*

 

 

The Quest of Tecfidera

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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!!

 

 

Tecfidera and lady parts O_o

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Things were going as they had been going all other days. I took my first dose for the day and then went on about my day. Then as I was preparing a feast for Father’s day, it happened. I had no idea what it was at first. I thought “Did it all of a sudden get hot in here? Wait what is this? I need to sit in a tub of cold water!!!!”  Was this because of my husband being near by? Ahhhh nope this was not a hunk of burning desire. It was…well I don’t know!! But

I was sure this is what was going on in my pants.

burning-text-effect

 

Now surely this kind of burning and such only happens when somebody delivers this kind of news.

*Giggles* So glad I finally found a reason to use this clip. It cracks me up!! Now back to the raging inferno that is happening below. Once I got myself  together (Removed my jeans and put on a dress that allowed some ummmm eeeer ventilation) I realized that a moment before my lady parts fire I felt the scalp and face flushing so surely that’s what this was. Like clock work it disappeared as quickly as it had come and all was right again. I told y’all I would give you ALL of my experience. Hope it wasn’t TMI. This happened on day 4 and hasn’t since. As a matter of fact I haven’t had any more flushing AND I have even tried taking the pills on an empty stomach again. I did it just for you. Oh and because a fellow MSer told me eventually I would be able to with no problem.

She was right. I took the pill on an empty stomach just to see if there would be some severe consequences and repercussion. There were not. Now I advise that you ALWAYS have something on your stomach when you take the your pill because honestly it is not worth the risk. So as far as the 120mg twice a day start, it has not been that difficult. I will let you know what things are once I start the 240mg pill once a day. Oh I still get the itching thing, but it is less and less. Wait I may have spoken too soon!! I just took my first dose today about 30-40 minutes ago. FLUSHING!!! OH NO!!!!

FIRE IN THE HOLE

Day 7 started like ^^^

TO BE CONTINUED…

 

 

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.

Fatal Attraction

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As any abusive lover mine tries to alienate me from my loved ones…Why? Because he loves me most right? He wants all of me to himself. This is a fatal attraction kind of relationship

Fatal Attraction

and well I can’t participate. I don’t really care for rabbit.

Rabbit       Rabbit 2

I guess you are saying how are you not going to participate? You have MS. Yep I do, but get this that doesn’t take away my ability to make choices. When you are fighting against a chronic illness there are so many emotions you go through. One being that the people around you just don’t understand. They don’t understand how hard it is just to wake up and move. They don’t understand what it takes to do all the simple tasks that make up a normal life. They don’t understand how low your lows are. And you’re right, they don’t understand…and they never will! Stop placing that expectation on them. How dare you!!

Righteous Indignation

It’s just not fair. But understand this. Just because they don’t understand, doesn’t mean they don’t care. Just because they don’t understand, does not mean they don’t want to or can’t help. When there are events that you can’t make, it doesn’t mean that you are not missed. When you are invited to said events, and you are at a low it is not “them” being insensitive. Most times it is just the opposite. It is them trying to connect in the way they know how. It is them trying to help. If you always say no, yeah the invites will start to dwindle. (It is just normal. Nobody wants to always be told no) If that bothers you, then you schedule some time with your friends that works for you in an environment that works for you. Some people will be able to make it. Some won’t. Do not take it personally. Go ahead with your plans

I usually start off with something like this in my head

Dinner Party

Yes I will have an elaborate, fancy smancy, dinner party!!

This is what it usually turns out to be

Dinner party 2

Friends, Fun, no frills. everyone bring yourself, a dish, and be prepared for pure unadulterated fun. And that is exactly what ensues. Yep I get tired, the pain starts to creep in and my lover starts to make himself known. I don’t try to hide this. It’s the hiding and pretending that makes us feel alienated. Everyone is laughing and having fun and you feel like someone is stabbing you all over your body.

THIS BITCH RIGHT HERE!!

Stabbing

You gotta give to these lovers they are persistent. Well guess what you can fight back!! Don’t let them take your life from you. Fight back!!!

Kick

I fight back by not scheduling anything after a hectic week. I also take an over the counter pain med before everyone arrives just to take the edge off and not be so drugged up I just wanna go to bed. I don’t try to host the event. We are all friends here. They know how to serve themselves and whatnot. I also don’t expect too much from myself or them. We are just getting together to talk about whatever, dance, sing, just do whatever. The fun that ensues is…well it’s good for my soul. You see you are not a burden to your friends, and they don’t see accommodating you as an imposition of some sort. I’ve gone to plenty of events where my friends have said. “Let me swing by and pick you up.” They may not understand what it feels like  to have a chronic illness, but they do understand in some cases what I need. Driving a long distance, hanging out, and then driving home sometimes can be too much for me and can be a deciding factor on whether I attend or not. Guess what I KNOW THIS TOO!! So in some instances I just ask to be picked up. After all by us riding together we get to start the fun a little sooner. My point is don’t withdraw from people because they don’t understand or that you are feeling a certain way about how they must feel. 9 times out of 10 you are wrong. Your true friends don’t get what you go through, but they sure do care about what you go through. They want to be there for you. They want to hang out with you. Don’t have the expectation that they SHOULD get what it is like to live with your lover. All they have to get is you and understand that when you throw an event one of them must bring cake!!

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