Neuro # 3 - Whatcha Say?

I have to say, Neuro number 3 is the best so far. Although we waited 40 minutes in waiting room number two (aka the exam room), it was worth it for someone who gave us his attention and didn't rush us.

He asked me some questions and got caught up on my current stats. Fatigue. Ringing/Buzzing in Ears. Vertigo. Blurred Vision. Heat Sensitivity. Dazed Vision. The list goes on and on.

We asked a few questions, and I even asked about CCSVI, which he was very familiar with. THANK YOU! I don't care what your view is on it but if you're a part of the MS community, especially if you're an MS Specialist, and you haven't heard of CCSVI, I'd rather not deal with you.

He gave a gracious opinion about the works going on with CCSVI and thought that if it is truly something that could help patients with MS, he would be elated.

I brought up my fatigue, my new found symptom that's probably been around for a while but what I'm just now admitting to. He offered me a drug (can't remember the name, sorry) that comes with two very specific side effects and one benefit.

The Benefit - It's used to fight the flu. So come flu season if I'm still on it, I won't need to get my flu shot. Doesn't really matter to me anyway since I've never had a flu shot in my adult life.

The Side Effects - Brace yourself. Number one: Your legs will turn blue. LMAO! Yes, blue. He even said that it would look like I was wearing blue fishnet stockings. Sexy! Sexy! Number two: I will have a very specific dream. The dream will seem as if someone is looking in my bedroom window.

When he said that, the hubs said, "Nope!". LOL!

(Little info about me. I am very aware of my surroundings and extremely guarded, you can say, when it comes to people knocking on my door, walking behind me, whatever. If you knock on my door and I don't know you, you can assume I'm packin'. LOL! Simple enough, I will not be a victim and MY children will not be victims either. PERIOD.)

So when the doc said that, the hubs said, "I don't want bullet holes in my bedroom windows." LOL! Which would probably happen. I would seriously freak out if I had a dream like that. Eek!

So with those two side effects, the doc said that this pill is the safest on the market. Really? Blue Fishnet-like legs minus the fishnets is safe? Ok. He offered a couple of other solutions too. Like, take a 30-minute nap right after lunch but be sure it's no longer than 30-minutes.

That would be great but...

a) How do I know when I'll fall asleep so I'll know when to set my alarm to wake me up?
b) If Sean is around how will he know when I'm finally asleep so he'll know when to wake me up?
c) How will I fall asleep? Really, how? I'm not a napper unless I'm really just blahhh.... and that's rare.

After talking for 30 or 40 minutes, I did some sort of speed walking test. I was wearing my 'Got Sexy' heels and wasn't making good time so I ditched them and went at it bare footed. Yuk! I hate walking around anywhere other than my home with bare feet but what can ya do.

4 seconds! YES! I'm thinking that's pretty good. :)

Then I got sent down to the lab. Dammit! Did you know I hate needles? Yeah, I see the damn things everyday but, well, technically I don't see them going in so it doesn't count.

I had to give a couple of tubes over to Satan's li'l helpers so they could see if my liver is being affected by the Copaxone and also make sure my white blood cell count is ok. Results to come. If you're on Copaxone, supposably you're supposed to get tested for those two sometime after starting the meds. Neuro number 2 never mentioned it but I'd rather be safe than sorry. Something to mention if you haven't done this and you just started a med. I think it goes for all the Fab-Four crab drugs.

C- Copaxone
R - Rebif
A - Avonex
B - Betaseron

So that's about it. Once I get the prescription for the fatigue stuff (I didn't remind him of it before we left because I wasn't too interested so he forgot to write it out. But his nurse called and said they would mail the prescription just in case.) I'll let you know the name when it comes in, just in case you hate the flu and love blue fishnets.

Oh! I just remembered a couple of things.

1. He said that caffeine may help with my fatigue issues and that our bodies get fatigued when our body temperature rises. He said that our body temperature is at it's lowest at 4am, and at it's highest at 4pm. Makes sense to me, I'm usually on my third or forth burn-out come 4pm.

2. He also said that people with Multiple Sclerosis suffer from an over-active immune system. Contrary to what I wrote in a previous post. I was so bummed when I was told that our immune systems are weakened due to MS but it turns out, according to my doc, they're not. And with Copaxone, it's fighting off about 1/3 of additional crap.

So there ya go!

Fuming

I received this invitation in the mail over the weekend. It's from Shared Solutions, the people behind Copaxone.

When I opened it, I saw the name of my former neurologist and I about screamed. I am extrememly frustrated that this incompetent, money stealing woman who claims to care about her patients is the "Featured Speaker" at this meeting. WHAT?!?!

I posted a few of the encounters I had with her last year while trying to get a diagnosis. You can read here and here and there's probably more.

I don't know what to think of it. To me, it seems like a joke. When I first saw it, I thought, "Great! Finally something to go to that's talking specifically about my situation and possibly updating us on upcoming treatments."

I'm unsure about what to do. Just ignore it, and let other people believe she's this excellent doctor in the field of neurology. Because she's not. Do I call Shared Solutions and see why they thought she was the best doctor in the area to deliver this speech?

I see myself sitting at this meeting (which seems to be very informal since it's taking place in a Bistro) and just getting so angry as I listen to her. I have a vision of me standing up, throwing my arm into the air with my finger pointing straight at her and saying, FRAUD!

LMAO!

Oh goodness. What to do? What to do? I would say that I would bring the hubby along for support but I think he may be more unhappy with her than I am.

So I'm not sure. I may just go for the last two words printed on the invitation, Dinner Served, and see what the slacker has to say. And then maybe I'll tell her that the seizures she said I had, weren't really seizures at all. And the brain MRI that was no worry of her's and was probably fine, had three lesions on it. And had she actually given me longer than 12.2 seconds to explain my symptoms and test my neurological response, she may've discovered quite a few more things pointing to Multiple Sclerosis.

(INSERT VERY BIG CUSS WORD HERE)

Video of Me Injecting My Arm

This video was made to help a fellow MS'er who was having trouble injecting her arms by herself. Hope it can help others too.

Copaxone Injections - Video

Again, lovely start. LOL!

Video Update

Please excuse the lack of clothing, I was in my PJ's. And the lack of makeup. Eeekkk!

Video Update

Happy Holiday's!

By the way, another lovely starting image on the video.

I Think Not

This morning was another shot to the thigh.

I HATE injecting my thighs.

Whoever said the arms were the worse (which is most people), they aren't for me. I have a trail of bruises on each thigh. Light to dark, old to new, less pain to more pain. Accompanied by swelling and redness.

It's lovely!

So this morning while wrapped in a bath towel, I stared at myself in the mirror. Talking myself into getting the thigh shot over with. My mind started to give in to the pain and I thought, "Screw my thighs. That shit hurts!" Honestly, I am very near the point of stopping the injections on the thighs all together. Every other area, hips, stomach, and arms, are way less painful and less traumatic than the thighs.

It's only been 5 shots in each thigh but I can still see every one of them. And feel every lump underneath the site.

On the brink of tears, the Hubs walks into the bedroom. He tosses something in and then walks right back out to tend to Bean. "Whew!"

I look at myself again in the mirrow, and begin to over analyze every inch of my body. I hate it. Well, half of it. I think, "we have to start running soon". I have hated my legs for almost a decade and these damn shots aren't helping that feeling. Just more of a reason to keep them covered up.

Again, I think to myself, "Once I get out of this slump (and blow dry my hair), I'll talk to the Hubs about running. I HAVE to do it! Have to!!!

Then the 'crazy woman' thoughts take over. "How can anyone love me like this? Ugh! I'm a wreck, my legs are hideous, I'm damaged goods". LOL! I can't help but to laugh at that because then I think, "Shut up Sarah. You're totally making this out to be way worse than it really is." I know that's the case because my husband tells me I'm perfect just the way I am.

I am such a Woman.

Now I know why my husband gives me that "What the hell are you talking about WOMAN!" look. Totally get it Babe!

Thoughts interrupted.

"What time do you wanna leave?" asks my husband.

"9:45am" I say.

Another neuro appointment.

It's All In The Ink

It's much easier to ignore a crappy diagnosis when it's spoken. In one ear, out the other. Of course, I didn't ignore mine but still, that letter makes it a little more real.

Yesterday was 30 days of Copaxone.

I started with heat before and ice after but during our getaway to San Francisco, I didn't use either. And I haven't since. I discovered while in San Fran that the heat and ice really didn't help much. To me, it was just an extra 10 minutes of nothing.

Now, I head to the bathroom and spend maybe 2 minutes doing my injection routine. Much quicker and still the same amount of pain. Now that I'm somewhat experienced (and I use that term loosely) with the injection process, I have to get my depth setting right. The depth setting controls how deep or shallow the needle goes in (holding back the vomit sound).

I saw my physical therapist last Thursday and complained about my neck, back and head pain. Lucky for me (his words), I had a headache when I arrived so he was able to show me how to easily get rid of it. It worked, for about 10 minutes, until it came back with a vengeance and lasted until Sunday morning. Crap!

He did some deep tissue massaging of my neck and loosened up some of those areas. I'm still not feeling any better but I have another appointment this Tuesday, hopefully it'll improve over time. He's thinking that I may get tingling in my hands because of a pinched nerve. I doubt it's just a pinched nerve but we'll see.

To other MS'ers, and anyone else who can understand...

When I visit places/people that I have to disclose my current health issues to, I'm discovering that I'm almost like a science project to them.

Nutritionist: "I've never dealt with anyone with MS before so I've been looking up a lot of stuff and it's quite interesting." And "So what do those lesions do?"

Chick at the Gym: "Oh, MS. Wow! Um, well we have these panic buttons over here." And "Maybe you should just workout when staff is here." And "So what's it feel like?"

Physical Therapist: "So, what causes this?" And "How long have you had it?" And "Can you tell me where your lesions are located?"

General Doc: "So you're taking Copaxone, what does that do?"

I think I'm going to create a business card that has "Important Facts About Me and MS" on it so I don't have to explain this crap over and over again. Some of the questions were legitimate but many of them I just had to breathe through in order to keep from laughing.

Oh and I forgot one....

The Vitamin Shop Girl: "What's that?"

Needless to say, I won't be taking her advice on which vitamins will work for me.

My Video Hello!

I thought I would do some video blogging today. Or, what I like to call, Vlogging. :) It's my first time so bare with me.

Tell me if you like it. Or if you don't. I won't mind. :)

The first video is about 5 seconds, it's part one. LOL! It's the "raw" footage and you can even see me mouth my favorite bad word. I'll give you a hint, it starts with a DAMN and ends with an IT.

Here's part two. And by the way, that door bell in part one was Mr. UPS guy dropping off my Copaxone.

Good God! Those still images of me before the video's start are horrendous! LOL! And it totally looks like I tossed Max but I'm sitting maybe 2 feet off the ground so...it's not as bad as it looks. LOL!

I thought an anonymous vote would help. Share your thoughts on the whole Vlogging thing.

Nutrition, and Heart Palpitations - Good Times!

Last week I mentioned that I was starting my new diet. One week down and so far so good.

Starting weight: 163.6

Today's weight: 160.0

I saw my nutritionist today and he said 155lbs is a good weight for me judging off of my BMI and height. Sounds good! Now if I can just get on the exercise wagon.

~~~~~~~~~~~~~~~~~~~~INTERMISSION~~~~~~~~~~~~~~~~~~~~

I started this post yesterday afternoon but had to stop after experiencing what I now think was heart palpitations. It ended up lasting about an hour and a half but 30 minutes in I texted the Hubs to see what he thought I should do.

He suggested I call Shared Solutions, the "Care Center" if you will, of Copaxone. It never dawned on me to call them and after I read his text I started crying. I have no idea why but a few minutes later I got on the phone with a nurse from SS. I told her it had been happening for about an hour at that point and that it comes and goes. With it, I feel shaky but not on the outside, I feel like the inside of my chest is shaking. Wierd.

She said that palpitations is a side effect of Copaxone but since I took it almost 8 hours earlier she found it odd that it was happening now and wasn't sure if it was directly a result of the Copaxone. She said that if it continued to happen for another hour that I should go the the ER.

"Great!" I thought. "Our first weekend of no soccer games or errands to run and I'm going to be stuck in an ER". I called the Hubs after talking to the nurse and burst into tears again. I was perfectly fine while on the phone with the nurse, joking even. But something about hearing my Hubs' voice made me very scared of what was happening and I gave in.

Luckily, about 20 minutes after the phone call my palpitations started to taper off. My chest felt a little shaky for another hour or so but after that I was good.

I guess I need to start keeping track of all this crap. I'm gonna find a fancy journal and fill it with MS crap, dates of symptoms, and whatever else falls under the "WTF" category. :)

I Hit a Vein Today

It HURT!!!

Really bad.

It was in my left thigh, I fired and everything was fine. I waited my 10 seconds as the Copaxone slowly transfered from the syringe into my body and when I pulled the Autoject away, I almost passsed out.

BLOOD!

LOTS OF IT!

At the very moment I saw it I thought, "Ugh, that's not good". I cleaned it up and luckily it stopped bleeding pretty quickly. I sat on the side of the tub for a moment and took a look at my new word art, For My Life! "Yes, it is" I thought.

I cleaned up the 'scene', applied an ice pack, and went into the living room and sat next to the hubs. He asked, "What's wrong?" and I just shook my head, "Nothing". Clearly lying.

I knew the veins hurt like hell. Lesson learned. Mark the 'shot spot' before applying heat so I can actually see what I'm doing.

I Don't Wanna

This morning was shot number 5. A full row of Copaxone completed. This morning was also the first morning where I stood there for a moment and thought, "I don't wanna do this".

Each time I start a new spot, today was my thigh, I hesitate a bit. But this time it was a little different. I thought about the pain that was sure to come after injecting. I thought about the needle (inconspicuously hidden by the Autoject) going in. It may be covered but I have an excellent imagination and can see it shoot through my skin.

Then I got dizzy and had to pause for a moment.

A reminder to myself was recited over and over in my head, "Sarah, you gotta do this. Sarah, you gotta do this." Dammit! So I stood up, took aim, and fired. POW!

Shot 5 completed.

One Shot, Two Shot, Three Shot, More...

"Bonnie the Nurse" called me Friday night and said that Saturday would work for her if it was ok with us. I said, "Yes" and she was set to arrive at 8:30 Saturday morning.

Wow, that happened fast, but I was ready to get it over with.

Come Saturday morning we were all ready to get things started. D was instructed to keep Bean busy with cartoons and toys back in their bedrooms. When she arrived we immediately dove into the instruction.

It seemed fairly easy but at times I found myself in sort of a daze. Not really listening nor caring about what she had to say. "Just give me the facts, let me get it done and move on", I thought. She was really very sweet and helpful and even allowed my crazy bloggin' ass to take a picture of her (above).

After showing me how to do it and practicing a few times, Sean did the same. He did a good job and was excited about possibly giving me a manual shot one day (should I be upset by this?). That'll never happen. We learned using the Autoject and also practiced the manual a couple of times just in case.

I administered my first shot with Bonnie and Sean watching. I did fine except for the pricking part. You're supposed to pull the Autoject straight off so the needle doesn't prick your skin. Sounds simple enough but it's easier said than done. It's hard to grasp what is 'straight up' when you're shooting into the back of your arm and can't get a good look.

Here's the effect from my first shot...

Note to self: Must tone arms.

I had some swelling which you can see in the middle of the redness. It went away in about an hour or two and the next day (Sunday) I was left with a small bruise. No biggie. It was sore that whole day but I could only really feel it if I touched it or rubbed it up against something. I went to the Hesperia Zoo shortly after receiving the shot so really, all was well.

My second shot was administered myself and was in my right arm this time. That one went much better, no pricking and no bruising afterward. Still the same redness and swelling as the first but it went away in a couple of hours too. See below.

I'm administering them in the morning. So far it's been between 8:30am and 9am which has been working for me. I'm able to get up and do my morning routine without the rush or worry of getting my injection done.

When injecting, I don't feel the needle at all. However, there is a major sting that happens once the medicine gets in. A bee sting (in my opinion) is an understatement. I've been stung by bee's before and they don't hurt that bad. But it is better in different areas.

This morning (Monday), I injected my hip for the first time (no pics for that one) and the sting wasn't nearly as bad and it didn't last as long. I still had redness but there was a lot less swelling and now, 50 minutes after the injection, it's barely noticeable. I've heard the arms are the worse and after injection 1 and 2, I kind of believe it.

It's still amazing to me that I'm able to do this. I don't think about it until the moment I have everything laid out on the counter and then I tell myself, "No biggie Sarah, you've already done 1 (or 2 or 3 and so on), you can do this".

And I do. I don't have a choice. For me, that's the best way to look at it.

Meds - Check! Insurance - Thank You!

I came home yesterday to see this sitting in my kitchen.

Looks like I'm getting an organ transplant.

I knew it was coming but still, I felt a little queazy when I saw it.

However, the little (warning) penguin on the top was quite cute.

The Copaxone has reserved a spot next to...


Sean's caramel syrup. I swear it's not mine. Really.

With this new addition in the fridge, we had no choice but to inform D (8 years old) of mommy's current health situation. I don't think any 8 year old should have to hear that their mommy is chronically ill and will need to give herself a shot everyday. So we sugarcoated it a bit.

We told him that mommy is sick but everything is going to be OK. And that mommy will have medicine in the fridge that she has to take everyday but he is not to touch it. Maybe I should put it next to the onions instead of the yummy caramel syrup?

He took it very well. Sean asked, "Do you have any questions?" and D said, "Nope! Can we do something fun today?".



Meet my worst nightmare

Needles. My needles. Dammit!!!

And...

the needle injector aka Autoject.

Much bigger than I expected it to be. I guess I was hoping for mini syringes and a mini autoject which would surely mean, mini pain.

I use to (and still do) feel sorry for diabetics. I remember thinking, "I could never inject myself like they do." Surprise, surprise. I know there's an oral med in the works for MS so I can't wait for that to come out.


On to the BILL


Take a look below...

HOLY MOLY! For ONE month of Copaxone my bill comes to a total of $2,610.28. WTF!

And DUE IMMEDIATELY from me is $0.09.

No Problemo!

I can guarantee you that if I didn't have insurance, I would NOT be on this stuff.

Thank you Sean. 143!



I asked the hubs if he thought I could just tape a dime to the bill and mail it back? LOL! He came up with an even better idea.

He said we should tape a dime to a bill to Copaxone for $0.01. HA! HA!

On a serious note, I am really handling this well. I'm ready to start this stuff and get to the point where everyone say's "It's easy". I'm a little worried about the side effects and I'm not sure if I should 'shoot up' in the morning and get it over with, or in the evening so I can sleep through the pain. I'm sure I'll find my way soon enough.

Right now, I'm waiting on a call back from my nurse so we can set up an appointment to teach me how to do all of this. Thank goodness for that, I'd be a wreck if I had to figure it out myself.

Have a good weekend everyone. :)

Some Complaining - I am Human

I’m noticing things now. Things that I do that annoy the hell out of me (and probably everyone else), that are most likely due to the MS. Like starting a sentence and pausing halfway through because I can’t remember the word I wanted to say. If I want to say, “Put your plate on the counter please." I’ll say, “Put your plate on the….. (then in my mind I’m thinking, is it the cabinet? The drawer? The table? The……oh! It’s the counter.)” But there will be a long pause before it comes out. Usually, my son or the hubs will finish it off for me. I feel like an idiot standing there with the ‘DUH…’ look on my face. Trying to figure out a simple word that is there, but it’s floating around my head and I’m not able to quickly get it to ‘fall’ out of my mouth.

And lately when I write, I notice I make a lot more mistakes. I’ll write “of” when I meant to write “if”. Or I'll write a complete sentence that seemed to make perfect sense to me at the time but when I go back to read it, I sound like I'm five. Very irritating. I’m a little OCD’ish when it comes to those kind of things.

Anyway....

I’ve made a decision on a drug. But I’ve been second guessing my decision to take Copaxone* since the day I made it. I think, “I don’t wanna be on this sh!t forever.” But then I remind myself that as of right now, MS is a forever disease. (Dammit!)

I got a call from Shared Solutions (Copaxone) on Friday. Way sooner than I expected. The lady on the line confirmed my information and asked me if I could remember the day I was diagnosed. “That’s an easy one. Yesterday.” I said. She told me that my medication and autoject* would be arriving in the next 5 business days. (Dammit!) She also said, “a nurse will be calling you soon. If she calls before the meds arrive, take down her number and call her when you receive everything. She’ll then schedule a time to come to your home and teach you how to use your autoject and medication.” FAN...TASTIC!

Friday evening, ‘Bonnie The Nurse’ called me. She gave me her number and told me to give her a call when everything came in.

This is all happening so fast.


*Copaxone: Disease modifying drug (supposably slows progression) that comes in prefilled, ready-to-use syringes and is delivered just below the skin with a small needle.

*Autoject: A re-usable automatic injection device.