TECFIDERA IS WORKING! THIS IS MY TECFIDERA DIARY!

Jeannine Everett, Tecifidera Editor, MSnewsChannel.com

This is my first diary of my journey about this new drug: Tecifidera.  I started it in the beginning of July but due to an allergic reaction I had to stop.  Most doctors don’t understand that I am allergic to Benadryl (yes this is true), so now I just started again on July 26, 2013.  This is my first week at 120mg.  I will be taking this dose for a month before I begin to take the 240mg dose.  I want to kiss my doctor; this is so smart to do this.  I know this drug is expensive but I feel more comfortable with this way of thinking.

I feel this drug is working for sure.  It has many side effects that deal with your stomach so my first tip is to take Pepcid with your pill in the morning while eating something; I mean really eating something not just a nibble.  I have found that eating a big breakfast really helps the stomach cramps that you get while taking this drug.  Also avoid eating spicy foods..  I found that out by mistake so you would want to stay away from that stuff.  If you can as well, if you are not already taking one, start taking a probiotics every day.  I have been for about a year and I know this is helping.  So pick some up and start taking it before you start this journey.  Although there are side effects with this drug I feel they are manageable and a lot better than injections or infusions.  I feel a lot better taking a pill.
It’s funny when you think about it, your immune system

My first & last visit to the new nurse practitioner from HELL!

I had a bad exacerbation a few weeks ago, my whole body from my chest down became numb, (arms and hands included) and after 5 calls to my neurologist I went to have an MRI and it was found I had new lesions on my spine.  At that time it was decided that I would be given 4 days of high dose solemedrol steroids at the outpatient infusion center.  I was also on antibiotics due to an UTI, which probably caused this flare as well and was in my 6th week of Tecfidera and the meds I need to take due to this new medication.  Needless to say, I was really sick.

Be patient, I am setting this story up. I take Gabapentin, Lamotrigine (both for MS pain), high doses of Vitamin D, probiotics, cranberry pills, Tecfidera, and Clonazepam for really bad anxiety.

I had to go into the office since my primary doctor left (I know why now) and I needed to get a new prescription for Clonazapam since it had expired.  I take .5 mg once a day which I cut in half and take half in the morning and half at night.  I decided that since this office was close to the infusion center I would go after my 3rd infusion to see this new nurse practitioner.  OK MISTAKE, I was buzzing at this point but I was going to run out of my medication so I thought it would be ok.

She walked into the exam room.  She looked at my file on the computer.  She proceeded to tell me I was an addict.  I was addicted to all my MS medications (Gabapentin and Lamotrigine) and should go off them right away.  They are not serving any purpose.  She kept on repeating, “I know, I can look up these meds so you are not fooling anybody.”  She asked me about Clonazapam and asked me why I was on it.  Again she said, you are not fooling me,  I can look this up.  Really BITCH, I want to choke you right now; I am full of steroids.  I told her I have really bad anxiety which was probably due to MS, I get very frustrated and lose patience very easily which is not like me.  She then accused me of refilling this drug more than I should.  WHAT????  REALLY?  I can only get 3 months at a time and can’t refill it until 3 months later, it is impossible to do that.  She looked at me and accused me of getting it off the streets.  What the FUCK!!!!!  I told her no and then she told me it was just a matter of time that I did.  I was an addict, she knows because she can look it up.
She ended up giving me a prescription for Clonazapam with no refills and I left shaking.  I HAVE ANXIETY BITCH AND YOU MADE IT WORSE RIGHT NOW NOT TO MENTION THE BUZZING IN MY BODY FROM 3 INFUIONS SO FAR OF STERIODS.  She was lucky I didn’t have a gun.

Needless to say I left so sick and proceeded to be that sick for days.  She really messed me up so bad; I was having an EXASERBATION BITCH..

I really really hate people who think they know everything just because they are a nurse or doctor.  This nurse admitted she didn’t know anything about MS and I really think she didn’t know what the initials MS meant.

I am still steaming about this after 2 weeks now.  What a BITCH.  I am not ever ever going back there and have already acquired a new primary doctor.  In that practice they only have nurse practitioners working right now.  I know why my doctor left without any notice.  I really loved her and hope the best for her.  I just know this place is not good for her.


I am still so so pissed off and can’t let it go.  I have a brochure with this bitch’s face on it so I am taking it to my neurologist.  I will tell him about this visit.  I hope he calls her out of it.  Stupid bitch.


Carry on.

Im not taking any Multiple Sclerosis meds! I'm getting worse, lots of lesions! I need to put my big girl panties on and take medication! I will be taking Tecfidera!

I have always been afraid to take medication. I have been like that all my life.  Now I have Multiple Sclerosis, need I say more? 

I was brave and took all the ABCR’s as well as IVIG, steroids. I was a good girl but hated the side effects as well as the needles. Lots of medication now; some for spasms, some for bladder, some for anxiety, vitamins, etc., I am so sick of it! 

I just saw my neurologist a few weeks ago. I am getting worse, lots of lesions, hey I know it; I can feel it. After a lot of thought, I decided to be brave now. I need to put my big girl panties on and take medication. I will be taking Tecfidera. Ugh! 

TRAVELS WITH MY SOLUMEDROL PANTS

I've written 12 columns for you.
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of this page to read them!

A few months ago I had that talk with my neurologist.  I was having so many outbursts, a lot of frustration and felt I was losing control at times.  He looked at me and told me I was getting worse and that I should consider getting back on an MS medication (I have tried them all I think).  Anyway, he was right so I decided on Tecfidera.  I did it, I really did (I hate meds) but when I upped my dose after a week I had an allergic reaction so I was told to stop the medication and go see my doctor, which I did.  I started me again on the Tecfidera having me take the lower dose for a month and then go to the higher dose.  Ok, I could do that.

Anyway during that month my body on my left side started to go numb and quickly started on my right side. Then my whole body from my chest down was burning, tingling and just numb,  you know

MS & THE LONG ROAD TO DIAGNOSIS!

 
 Jeannine Everett, Columnist, MSnewsChannel.com

 I started having problems when my son was born in 1986.    OK off to the doctor where I was told that it was just because I wanted to be at home with my new son (I really did but that was not it).  A few months later same thing different doctor who told me I had Epstein Bar Virus with Chronic Fatigue (note to self, didn’t know there was a difference but I guess I am wrong).  He also diagnosed me with hypoglycemia. ugh. So ok, how do I go on with my life?  I just did.  At that time I had 2 children, one newborn and one 9 years old so how can you just stop?  I also found out at that time that not everyone's legs go numb when going in a hot tub. lol

I didn’t stop, how could I?  I had only finished some brief college courses throughout my life and at that time I got an opportunity to work for a large insurance company during the Y2K scare, those really nervous about the coming roll of 2000.

MOST OF MY FAMILY WOULD RATHER NOT HEAR ABOUT MY MS!

Jeannine Everett, Columnist, MSnewsChannel.com

Hi! Here's my weekly Column: My name is Jeannine and I have Multiple Sclerosis (kind of sounds like an AA meeting huh?).  Anyway I was diagnosed with MS August 2000.  I didn’t know what I had; I just knew I had something.  I am the oldest of 3 children and was the most daring of the three.  Little did anyone know, right now, I would have to be the bravest as well. 

We lived in New Jersey and when I was 17 my dad got a job offer in California.  Wow, all the cool people lived there of course, not really but I thought so at the time.  So off we went where I started my senior year in a new school suffering culture shock!  But I lived, married and had my daughter Erin (she is now 37 who has a brand new daughter and one more on the way) and eventually a son named Joe, who is now 27.

DATING & MS: I GOT BRAVE & TRIED ON-LINE DATING

Jeannine Everett, Columnist, MSnewsChannel.com

OK I will say upfront, I am not an expert on this subject.  But I do have a story with opinions.

When I was diagnosed with MS my boyfriend of a few years didn’t handle this diagnosis very well.  As a matter of fact I think he was as scared as I was.  Just 2 months after my diagnosis he decided he didn’t love me anymore.  I was devastated; I felt like a piece of trash that someone threw away and put out on the curb.  It hurt so much.

Chemicals, Side Effects, Pesticides & 4 Hour Erections! Oh My!

Ok I hate them hate them hate them.  I am talking about those white packets you get with your drugs, reading the back of anything you buy from drain cleaner drugs to food.  After reading those labels I promise I won’t drink drain cleaner, put a knife in the toaster or use the product is the seal if broken.  Ok have you ever read about what is in your food?  Do you even know half of what it is all those big words?  I don’t know about you but it just makes me wonder what it does and how it affects me.  My daughter recently went Vegan, totally organic.  It seems like the right thing to do thinking about all the pesticides now in our food and the whole GMO thing about adding chemicals in our food to make them grow faster, bigger and better.  UGH!  I was recently reading my popcorn box which should be mild with chemicals and they add “mixed tocopherols for freshness”.  What am I putting in my body and was this the start of my MS whacking my immune system with a baseball bat?  This is awful and why isn’t anyone stopping this?

Catheter Travels! Yes, I am really saying this…. I’m telling you my ugly truth - Catheters, those evil expensive things

Catheter Travels

Yes, I am really saying this…. I’m telling you my ugly truth - Catheters, those evil expensive things.  I don’t have the same problem that everyone else has (leakage only); I have to use those devil things that I now must to learn to love.  UGH. I wanted to give them another name but nothing rhymed with UGH, so they are, you know, sticks.  But now, I have both issues, I leak and cant pee.  There has to be a place in hell for this.  OK, does this mean I can’t have those trips with the girls to the little girls’ room, together like the old days? Do I now have to stand up and pee? DAM.

Anyway, my first trip to the urologist I was told that I needed to catherized myself at least 4 to 5 times a day since I was getting those wonderful UTI’s, and you all know what kind of fun that is and how it loves to give you wonderful MS symptoms.  Great.  No worries, it’s easy (right, you are really making me better now Doctor).  So they give me a picture of my privates, yes a drawing like I didn’t know what it looked like and where to put it.  It looked like I should color it and hang it on my wall.   I never in my life thought it would be so hard to find that hole lol.  I have used mirrors (I felt so stupid) but I now know where to find it and I am so sorry I didn’t listen in Health class but it is a lot easier if I was a man.

You have saved my life & helped my MS: thank you to the Post It Company

Post -Its

To anyone who has MS, need I say more?  Right now I am looking at my kitchen table, refrigerator and counter.  I have really a million posts- its showing what I need to do everyday.  In my bathroom I have a ton of them as well.  I never can see my face (which is good, I really don’t want to; I want to keep the dream of my 30’s still alive.).  I really should have bought stocks in this company.  It would have helped me a lot financially today.

Anyway, this is not a rant but a thank you.  Your tiny pieces of paper have become my brain.  Every time I think of anything I need to remember, I need to do or appointments before I can organize them on my calendar (my calendar if a different story), these memories go there.  I just stick them and don’t have to think of them until I see them.  In doing that I can now go on with my life and not have to worry about forgetting things.  This helps me in ways that normal people would not understand.  This has become my life.  I really have bad cognition now.

I have often thought about wallpapering my kitchen and living room with these papers.  I can do a multicolored theme, one for spring, winter, fall and summer using all these colors.  It would be so cool, my brain would be everywhere for everyone to see.

I also use them to write 3 things I can accomplish everyday.  As I do them I cross them off, this way I can see what I have done.  This helps me to feel like I am moving forward.  If I am not feeling well it can be little things like taking a shower, wiping down a counter or getting dressed.  When I feel better it can be little harder things like dusting, laundry, etc.  I see things getting done and that fact makes my mood more positive.  If by chance I can’t do one or two things on that list, I just ripe up that post it and make a new one by moving the things I haven’t completed and add some more to make those 3 things.  This task has helped me for the last 13 years.

So

Carry on.
thank you to the Post It Company.  You have saved my life.

My New MS Income

It is hard sometimes working full time and having MS at the same time.  I’ve done it and tried to do it with the best of my distorted abilities.  I made good money at one time; I could trade in my trucks or cars and get a new one, I could eat, pay my bills, go on vacations or even move where I wanted to go.  Then came MS; this thing that I had to share my body with.  I really tried to keep working but it came a time where I had to file that thing…. That thing is Social Security.

 I had heard it was so hard to qualify, that it took lawyers, lots of tries etc to get accepted.  I really don’t understand this because I did put my hard earned money into this fund.  But I did it, I filed by myself.  A few months later I got that call and was set up with an appointment with a case manager from the social security office.  We went through all the questions and when it was done they said they would notify me by mail if I was accepted.  Two, yes I said TWO weeks later I got a letter in the mail that I was accepted and it told me how much money I would make monthly and when that money would be deposited into my checking account.  What a relief and I couldn’t believe it, I was getting social security. Then it smacked me in the face….. I must be really sick.   At that moment I was scared.  Now I can take the next step, I can get on with my life. 

Now comes the rants -   I reread the letter, I was to get this $$$$$, huh?  This money wi

"I hate the heat! This heat slurs my words-gives me fatigue...Bad Bowels

I hate the heat1  I mean I really hate the heat.  I have to backtrack here for a bit so bear with me.

I was diagnosed with MS in August of 2000 having symptoms for 14 years.  I was diagnosed with everything under the sun before this happened, Epstein Bar Syndrome, Chronic Fatigue, Ulna constriction (which I have had 3 elbow surgeries), compressed discs in my neck(2 surgeries) and Hypoglycemia.    Well anyway, I was diagnosed with MS in San Francisco (I know about this because my neurologist gave me a MSbook to help me understand what it  was) and moved to Monterey, California.  It was cold and damp.  You think hot is bad, try cold and damp.  Anyway I got this wild hair and decided to move closer to my son in Arizona.  OK, that’s a good idea because in Monterey I could never get warm (everyone thought 80 degrees was a heat wave), so Arizona would be warm and I would love it.

What was I thinking #^%#(&^)^)(&_&*.

OK, yes it is a dry heat (and I want to hit the person who said that)   It is HOT.  I have actually wanted to crack an egg and put it out on my patio to see what would happen. 

Im not taking any Multiple Sclerosis meds! I'm getting worse, lots of lesions! I need to put my big girl panties on and take medication! I will be taking Tecfidera!

I have always been afraid to take medication. I have been like that all my life. 

Now I have Multiple Sclerosis, need I say more? 

I was brave and took all the ABCR’s as well as IVIG, steroids. 

I was a good girl but hated the side effects as well as the needles. Lots of medication now; some for spasms, some for bladder, some for anxiety, vitamins, etc., I am so sick of it! 

I just saw my neurologist a few weeks ago. I am getting worse, lots of lesions, hey I know it; I can feel it. 

After a lot of thought, I decided to be brave now. I need to put my big girl panties on and take medication. I will be taking Tecfidera. Ugh! 

But I am taking it because I need to be as proactive, I need to grow up. 

Seriously, I can deal with side effects; it is better than dealing with the things that may arise due to this illness that will be permanent and have already become part of my life. 

So man up and here I go (of course I will have to look at this medication for a few days before I take it but I will take it.)