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Wednesday, January 28, 2015

And the winner is.....

Finally got to my neurologist appointment.  Brought the hubby with me so he can listen to my options for new oral medications. I also wanted to discuss my current symptoms with the Dr. and have Keith hear the neurologist's assessments.  I think it's a good for him to hear from a "professional" every so often so he can be reminded this disease is always working on my body and changing whether  he can see the physical effects or not.  My fatigue is not something a good nights sleep or and hour nap can fix.

Once we were done with the regular assessment portion of the appointment the Dr./inquisitor peering over steepled fingers with a slight smirk(yeah I caught that)asked the million dollar question,
  "So, are you still taking the Rebif injections"

I looked him straight in the eye, plastered a huge smile on my face, slapped my hand on the desk and said,
"No. That's why I'm here"

I have never seen him laugh out loud in all the 10 years I have been seeing him, but he let loose at that.  I know he was testing me because I had  spoken with his nurse previously and confessed my injection indiscretions.  I told him I feel like a baby that I can't bring myself to inject Rebif anymore, but that is just how it is for me now.  He was very kind (like always really) and went right into explaining my options for oral medications.  I had already done some research on the subject and was prepared with and initial choice, but I wanted to hear from him as to what he would recommend. We discussed all three.


Gilenya  http://www.gilenya.com/index.jsp

Aubagio https://www.aubagio.com/

Tecfidera http://www.tecfidera.com/

We came to the conclusion that Tecfidera would be the best option for me.  Tecfidera was my initial choice and I was pretty thrilled that was the medication he was most leaning towards for me. I am not going to go into the specifics of each of the drugs.  You can look those up for yourself with the included links.  This a personal decision for everyone and one that should be made with your neurologist.

I had the initial blood work done and will be have an MRI in the next few days.  I am currently experiencing a flare- Boo Hiss- and will be having a round of IV steroids - double BOO HISS-so once I get over this bump in the road, I'll be able to get on with the new medication.




Wednesday, January 14, 2015

How are you feeling?

How do you respond when someone asks "how are you feeling?".  Are you honest if you're not feeling all that great? Do you fudge the truth to steer the conversation in another direction?  My answer depends on who's asking.  If it's family or a close friend I tend to be a little more honest.  If it is an aquaintence who knows I have multiple sclerosis, but I don't know very well I'll fudge it with "I'm good and you".

The sticky part comes when I am honest and the reply always seems to be "well, it's just the weather, everyone is feeling like that", or "well you seem like you're walking alright".  It is so frustrating because I know they are well meaning and trying to be supportive, but in the end I feel like my symptoms are being diminished. I mean jeesh you asked so please don't make excuses for me or try to reinterpret my symptoms.

Oh and if I get asked one more time when I start my new medication, I think I'll smack someone with my cane.  I understand sometimes people believe that medication is a magic pill that will never make me have another relapse again, but if that were true that would be a cure right?  Our multiple sclerosis medications control the disease to an extent.  If I stop taking my medication that does not mean I will have a relapse the next week.  The reverse is sometimes true. I can take my medication religiously as prescribed, but still have several relapses during the year. 

While we are on the subject of relapses,  a relapse for me is not just the inability to walk properly.  An exacerbation can affect my sight, my left arm, my speech, my cognitive thinking, or be extreme fatigue.  It is not cut and dry and even after 24 years this disease is always changing for me. 

Do find these things true for your situation?  How do you handle them?  For me the best place to be completely honest is right here.  Lucky you!





Wednesday, January 7, 2015

Apppointment or Confessional

My upcoming Neurologist appointment has been really weighing on my mind.   First off, I have to go in and confess that I have stopped taking my Rebif injections.
That  makes me nervous, just like going to confession at church. If you're Catholic you can relate and remember sitting in the confessional pouring out the great sins of your week, "I called my little brother a jerk, I though my mom was the B word when she didn't let me go Leeca's house, I yelled at Leeca and threw my roller skates at her and walked home in my socks" You laugh, but that was big time sin back in the day. 

These days I sit nervously in the exam room, and when the doctor comes in I hem and haw about how I'm actually doing then all of a sudden just blurt out "I'm sorry I haven' been taking my shots".  I don't want to be judged or looked at as "bad", but aren't I if I don't take my medication properly, or call my little brother a jerk.  The priest, I mean doctor just sits there stone faced and when you're done doles out my penance and feeds my guilt.   I always feel like I have let my neurologist down somehow by misbehaving and not taking my injections as prescribed.

 Depression, as I have written about in the past,  is something I deal with everyday.  I believe the Rebif truly was making it worse.  I feel better mentally since I have stopped the injections. Physically, I would say I feel the same, but not being able to see my lesions I really don't know. 
 That's the kicker.  I can't really see it so it's hard to believe the shots are worth the aggravation.  I can believe and have faith in a higher power, creator if you will, even though I can't see her, but my M.S. meds, not so much.  Rationally I know I have been having less flares than in the past before Rebif. Sometimes I feel like my whole existence is just one big exacerbation, and I just deal with it until I fall because my gait is so unsteady, or I can't lift my arms, and call for IV steroid treatments.  There are times when I feel like I'm only on medication to make my family happy.  Mr. HubbyMan thinks I'm being selfish if I don't take the medications because inevitably he is the one who is inconvienced when I have a major flare and has to miss work.  He wouldn't say that exactly, but that is it in a nutshell.  Others feel I am not taking care of myself properly if I don't investigate every means and medication out there, and I'm just playing fast and loose with my health.  Arrrrggggghhhh! I know I know who gives a shit what others think.  Sadly this girl does.

I want to give the new oral medications a try and will hopefully be a candidate.  I have read some side effects such as nausea and possible heart/liver conditions.  Yikes!  I just want to feel good and not have to stick myself with a needle anymore.  

So I will go this appointment and make my confessions, "forgive me Doctor, its been 3 months since my last injection".  Do my penance, "three blood tests, eye exam, EKG, an MRI-with contrast, new oral meds with possible liver and heart damage".
I will try to be a good M.S. girl and stay on my meds, but you know what they say about M.S. girls.........







Saturday, January 3, 2015

Good enough for today

I know I haven't posted in over a month, but now it's time to get back on track.  My last post was about how I planned to handle the holiday season this year.  I'm happy to say things went pretty well overall.  Of course there were a few bumps in the road.  I still let myself get a little crazed about decorations for about a minute then I let it go.  My daughters reminded me that they always love our house at Christmas time and that was enough for me.  Cookies got done in batches over the course of a week and that was so much more relaxing than trying to do it all in one day.  When the teens took a large batch to the elderly next door neighbor's house we recieve a phone call within minutes from son to say thanks and she was tickled to recieve the cookies.  That made all of us feel pretty good. The 15 year old  dancing queen/actor/playwrite/future Tony Award winner, designed this crazy ginger bread house, and printed up cards for all cousins.  They loved them.  The 17 year old swimmer/straight A student/lifeguard/swim instuctor/ future leading Neuroligist, reasearcher in the country, worked her booty off yet still made time to hang out with the family.  I am going to miss this girl when she heads off to college in August.  I will be getting over my driving induced anxiety to make the three hour drive to see her for sure.

I also touched on the fact that I plan on chaging M.S therapies this year.  I had to reschule my Neuro appointment for later this month but I'll be sure to write and update on what I choose.

Trying to make this the best year possible my family and myself. I always felt in the past that I'm just not enough.  Not a good enough wife, mom, housekeeper,friend,daughter,sister.  This year that has to change.  I'm starting to say "this is good enough for today, I'll see what happens tomorrow"  I've already had a run in with the Hubby about housework and the such. And I quote" you just haven't been pulling your weight around here.  I work my ass off and should be able to have a place to relax when I get home"  He later retracted the statement saying he was mostly upset with th girls not picking up after themselves, but it still stings.  Especially when he always makes suggestions for places I could work part time.  I'm on SSDI.  That's good enough for today.



Crazed Gingerbread House