Tag Archives: MS treatments

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!

 

Advertisements

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!! 

 

 

 

 

You. Me and He…What we gonna do Baby?

Standard

Yep me and my lover are at war…he is trying to take control of my body totally and I am not having it!! Now let me apologize to you for letting him keep me away from you. He is such a jackass. So as you know I suffered a minor relapse. No big deal right? I mean after all the use of your limbs is soooo overrated. Well thank God this time my lover didn’t decide the left side of my body belonged to him only and shall not be moved. I guess he has learned that that battle he shall never win. So what’d he do this time? He decided that eating for me was not an option…and that being able to actually feel my limbs was a luxury I could do without. Oh and pain he would serve me pain on a silver platter. He had several plans for me, but I won’t bore you with all of them. So how did I fight back?

Well it all started like this

My lover is a vampire...

My lover is a vampire…

Well this is how I started to fight back. After months of this dysfunctional relationship I decided to seek help. So I made an appt to the MS Center to see my world renowned neurologist, Dr. Jeffrey English. In that room I poured my heart out. He listened, told me how Tysabri may not be the weapon of choice this time. Began talking to me about Lab work and Tecfidera. I heard nothing after lab work. Have I mentioned I am terrified of needles? Oh. Well I got my drug handout (see below) and ended up being sucked of several tubes of blood and bandaged up. See above^^^ Does anyone have any experience with this Tecfidera stuff?

tecfidera_360288_360289 Reading later

When I finally recovered from

Nurse

OK maybe I didn’t do all this heah, but in my head I did. (Although the lab tech is wonderful and has never once had to prick me more than once and we end up talking through the entire process.) This is the scene that plays out in my head and I fully prepare myself to be beautifully shame for my dramatic faint!! Now where was I? Oh yeah, so after labs and what not, the juice was ordered and get this I was getting a home nurse because my lover wasn’t allowing me to leave the house!! Asshole!! Anyway when I got home I read the information in Tecfidera and thought. I don’t want to be a

lab rat

 

But this drug has been used in Europe for years, but not for MS. Uggggh I don’t want to think about this now. I’ll think about it later…after I get my juice and MRI. Oh yeah the drama with the MRI…I shall share that with you later. So back to the Juice. Y’all do know that the Juice is administered intravenously right? So the nurse comes in to do this.

I shall calm this lover of mine

I shall calm this lover of mine

And when she was done I looked like this

Dramatic Faint

Have no fear tho because in my head as I began to pass out this is what happened

The POTUS to the rescue!!

The POTUS to the rescue!!

Because if it wasn’t for Obamacare I 1. would have health insurance that I was paying a premium on, but wouldn’t cover my treatment and 2. Probably wouldn’t get the treatment because it would cost me a fortune, but I digress.

So as I sit hooked up to the good stuff (Not really, but hey you can see that my imagination is active.) This stuff is not good. It leaves a metal taste in the back of my throat and a little light headed with blurred vision. But that’s short lived. So I just call on Scotty and followed the drip. (Yep I mixed Star trek and Robin Harris.) Y’all should be used to my brain by now.

Juice me up Scotty

Juice me up Scotty

I just follow the drip

Drip. Drip. Drip.

Drip. Drip. Drip.

My lover was determined to hold on to me and I was determined to keep him at bay. *sighs* The juice usually peps up my appetite but this was breakfast.

Yep there's a theme to this

Breakfast of Champions

And this was lunch…You don’t need to see a picture of dinner. I’m sure you literally get the picture.

Yummmmm

Lunch of…well you get it

Oh yeah I use the children’s allergy so that I can be somewhat coherent…But I’m never coherent sooooo…

So after three days of being juiced up and drinking boost (Which was surprisingly yummy) I felt…the same. Well actually a little worse. But I wasn’t telling anyone because I was going to the beach DambIt (Yes I meant dambit) and I wasn’t going to let my lover steal this away from me…or my family!! So to the beach I went…I’ll have to share that experience with you. Yep. Me, my family, and my lover…That never turns out well…Or does it?!!

 

This post is dedicated to my girlfriends who…insisted that I get back to posting.

I love my girls!!!

I love my girls!!!

And Ms. Jackson I will admit to being Toni…but only because she is sitting on the exam table!! Wait is this the episode where she is pregnant? Oooohhhh Hellll nawl!!!

 

My fight with my lover…I surrendered

Standard

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.” -Eleanor Roosevelt

Why am I posting this quote again? Because it seems to be the running theme in my life these days! Not only is my lover rubbing fear all over me every chance he gets, but life has been throwing curve balls that I keep thinking I am incapable of dealing with. I keep proving myself wrong. Get this tho’ it is the times when I just surrender all that all works out as it should. This concept is a difficult one for me.

When I was diagnosed I decided to fight, but fight sometimes, as I have learned, means simply surrendering. Surrender all notion that you are in control of any of it. Sounds crazy to a person like me. When they said you may not walk. I thought “The hell I won’t!! I am going to will and fight myself into moving this left side.” And for a while I thought I did. But as the years go by and I have more time with my lover I realize that I have surrender fought, more than I have fought, fought. Do you understand what that means? It means the minute I accepted that there wasn’t anything I could do about having this lover invade my body, I was surrendering. But not a give up kind of surrender, but a give it over kind of surrender. The kind of surrender that says “This is not within my control and I can not give into it, but I also can’t cure it. So I must surrender any notion that I can.” There was peace in that for me. I didn’t have to figure out how to fix it. You see I gave that over to God. And throughout this affair there have been several instances where I have surrendered. I have looked fear in the face. The fear of losing my independence, the fear of losing my words, my ability to speak (And anyone who knows me knows I MUST SAY WHAT I GOTTA SAY), my ability to walk, run, play with my children, nieces, nephews. I feared losing me. And what we all know is that you can not lose you in any relationship…especially one that is a s dysfunctional as the relationship I have with this lover of mine. So as I prepare to go in and get MRIs, blood drawn, tests run and results read, I understand that the fear I feel is normal. It is ok. It is also ok surrender this fight.

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.” -Eleanor Roosevelt

The strength, courage, and confidence I have is in God. The blind faith is the thing I thought I could not do and that frightened me before the experiences that showed me that with faith I can do the things I thought I could not do. This lover that was introduced to me has transformed me and I must say I am the better for my challenges…and I never would have thought that’s where I’d be 4 years after losing both my parents and being told I have an incurable chronic disease.

“We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.” 
― Maya Angelou

FAITH NOT FEAR

FAITH NOT FEAR

Don’t interrupt me

Standard

Today was a busy one for me and I almost didn’t get in an entry, but I couldn’t go without at least checking in. This week has been blah. Yeah the asshole is knocking on the door and I am trying not to answer, but he is a persistent little thing. He is trying everything in his power to get my attention. It started with the little things. Things like tremors in my left arm, spasticity in my legs, numbness, cold feet, hot feet, and the list goes oooooon. and the list goes oooooooon. I usually ignore these pleas for attention. The ones I can’t seem to ignore are the muscle spasms, fatigue, random pain, vertigo, and just his overall annoyance. Uggggggh, why can’t he get a life? Can’t he see that I am ignoring him? It looks something like this.

ignoring

Ok without the cigarette, red hair, and well ok this is not me at all, but I am ignoring him. It just seems that no matter what, he continues to interrupt me. So now I must find a way to calm him down once again. I think I’m going to Arnold Schwarzenegger him. Yep calling my doctor and ordering up the roids…(steroids for all of you who didn’t get the Arnold reference.) Steroids is another treatment that seems to keep my lover at bay. Right now he is getting on my damn nerves…literally. This is going to be one of my shorter posts simply because my lover is calling. So

I'll be back

The MS Mistress Strikes Back !!

Standard

For an entire year I was on Tysabri. Once a month I went in, gave my blood for testing and answered the questions about my health The tripping and losing balance was less, the pain was less, the cog fog was less, the numbness was less, the attacks on me were less. The anxiety before every infusion even begin to diminish. Have I told you that I was terrified of needles? The MRI’s showed that my lover was backing off. The restraining order was working!!! I was enjoying the monthly “outing” with my friend Tammy and even looking forward to taking chocolates to all in the infusion room. Every now and then there would be someone in the infusion room that just couldn’t deal with being newly diagnosed with a disease that was incurable and trying to take them down.

I remember one lady that was just devastated and kept talking about all the things she wouldn’t be able to do anymore. I asked her one simple question. Can you tell me what you can do? She went on to tell me those things she could do and I said there’s nothing wrong with you, but you need to refocus. Were you climbing Mt. Everest before the diagnosis? No? Oh. Then why are you focusing on not being able to climb it now? She looked at me for a minute and seem to settle into this new normal and new adventure she was going on. She was in for steroids so I never saw her again. But I often wonder if her restraining order took. There was also the time I went to a support group and this man kept saying he would never  be able to fly a plane.  I asked “Do you have your pilot’s license?” “Well no.” He responded. So you don’t have a pilot’s license and haven’t flown a plane before now, why are you so distraught that you won’t be a pilot? Refocus. Sometimes with this disease it literally and figuratively all about your mind.

After a year on Tysabri my neurologist took me off the treatment. I was doing well and the longer I was on it the more at risk I was for developing PML. That was in 2012. How am I doing now? My lover has reemerged and he is still just as big an asshole as he was before. But I’ve been here before and I will not go down without a fight. So I am slipping on my stilettos and preparing to administer a good ole fashioned butt kicking.

The MS Mistress Strikes Back!!

The MS Mistress Strikes Back!!