Who am I From Your Perspective?

My perspective:

Cognitively, I feel like I'm back on my game. Physically, I'm sore and achy, but I can deal with that. According to my doctor, sore and achy are very minor side effects when beginning Rebif (my interferon MS medication). Things are going well, really well. My health is stable at the moment and I'm making every effort (almost) to keep it that way. The almost refers to my slide back into carbs.

Daryle's perspective:

He's trying to keep me as I was, or what he thought I was. He's trying to help, but still doesn't really know what that entails. He's trying to understand what I'm going through, my mood swings, my silence, my desire to run. It's difficult right now.

Close friends and family's perspective:

My guess is that they see that I'm struggling, but trying to keep a brave face. They want to help, but really, what can they do? Just keep talking to me. That helps. A lot.

Everybody else's perspective:

I can see. I can walk, talk, drive and answer "not bad" when they ask how I am. So... to the rest of the world it appears that I'm fine. Nothing amiss. From their perspective I'm the keen mom who loves to participate and take on new challenges.

At Cubs last night, once people heard that my vision has returned almost to normal, they seemed to think that it's all better. That somehow I'm through with MS. Cured. Wouldn't that be nice? I wish that were the case.

It was been implied that I should be taking on the same duties that I had initially planned on when Beavers wrapped up last spring. You know - keep my word. Okay, they're right. I had planned on being a Cub leader and continuing my role as the popcorn fundraiser co-ordinater. But a lot has changed since then. Last night one of the leaders who is normally quite chatty and personable, completely ignored me, refusing to acknowledge my presence when they walked past. I'd like to think that they're not aware of what I've been going through, but they do know. I realise that they've been put under more of a load because they had to fill in because the group is short by one leader and they've been burdened with handling the popcorn fundraiser this year, but can't they understand that I need to focus on my own health right now? Sorry, but they'll have to enlist someone else's help this time around. Give me a year or so to get my bearings.

Now I feel guilty when I shouldn't. I have every right to focus on taking care of myself. I have every right to focus on my family. I'm finding it very difficult not to be angry. Hell, I'm finding it difficult not to scream, not to be bitchy, not to tell the world to to f*** itself.

So, after my rant, of which there seem to be many these days, who am I from your perspective? Likely, I'm now the cranky bitch digging her heels in.

Injection #1 - Done

Finally, I'm on medication for holding off the next relapse.

Nurse Delvin spent about an hour with me to show me exactly how to take care of my own injections. Luckily, almost anything that could go wrong, did. Now I know not to panic when things do go awry - I know exactly what to do. The needle didn't eject properly (required dislodging with tweezers) and the medication appeared as a droplet above my skin at the injection site (required a quick wipe with the alcohol pad and applying pressure).

Thank goodness the actual injection didn't hurt. I was amazed. Of course I was expecting it to be quite nasty, but in all honesty, I hardly felt it. The injection site was a bit tender a few minutes later, but that was taken care of with a cold compress.

Also, it will take a little while to ramp up to the full dosage. For the first two weeks I'll be receiving a 25% dose at each injection, followed by two weeks at 50%. Afterwards I'll be receiving the full dosage, by which time I should be used to the medication.

Mr Roboto is Here!

No, that's not Mr Roboto. Darn - I'd happily sit for him to do my injections three times a week. Ha! My apologies in advance if my entry is a little disjointed. I just can't stop replaying OGG dancing to Jack White's Shakin. This song has been stuck in my head for weeks - can't wait for the CD to arrive. Whenever it's played on the radio while we're driving, the family is temporarily vaporized while I disappear into the music. Of course the family returns along with reality as soon as the song ends. Hee-hee!!

Anyhow, I digress...

Yesterday's mail delivery to the office included a nice big box containing my new robot! Like an excited child, I brought the box into my office to disembowel in privacy. The box was jam packed with all sorts of goodies: the RebiSmart auto injection unit, impact-resistant carrying case, 2 travel bags, instruction booklet, packages of needles, alcohol wipes, a "sharps" disposal container, and the all important robot battery.

Okay, now I need the medication. I've been procrastinating with calling the pharmacy to make sure that the Rebif is in the correct format. Cartridge, not pre-filled syringe. My heart was actually pounding as the pharmacist checked in the fridge. Had to keep saying to myself: I will feel better in a minute, I can deal with this, the wait will be over any moment now. My scribble paper looked like a war zone by the time the pharmacist returned to the phone. She confirmed that they had a package of four cartridges waiting for me. Excellent. I felt much better. What's wrong with me? Why on earth did I get so stressed out about the medication? Honestly, I had a very difficult time dealing with it and actually felt nauseous while I was waiting. I feel like I'm becoming, or have already become, quite a head case.

When the pharmacist said "that'll be $385" I replied that I thought my benefits card should be covering most of it. "They already did. They paid $1585"

$15.85?

No, one thousand five hundred eighty five dollars.

Oh.

Now that my cartridges of liquid platinum are safely stowed in the fridge, I'm ready. Ready to take on a second job, that is.

Time to call the nurse to set up an appointment. Leaving messages on voice mail is not my forte. I'm actually quite terrible at it. Often I have a rough script written out on my scribble paper before I make a call. However, I made the call to the Multiple Support Nurse Program cold. Cold is bad, very bad. My train of though derailed at least twice while I tried to navigate my way through leaving the message. I should call back and say that I wasn't sure if I had included my phone number in yesterday's message. This time I'll prepare. Here we go: I've got my paper in front of me, a pen to scribble with and some notes to help me with the conversation.

In the meantime I've made a list of questions to ask:

How long is it expected that I stay on this medication?
What are the various injection sites I can use?
Do I need to take the sharps disposal container with me when I travel?
Am I able to get a prescription for the supplies like the needles and wipes?
What time of day do I take it?
Will I be able to get flu/shingles vaccinations?
Are there any medication conflicts I should keep in mind?
Can I have a drink or two?
Will I get some of my cognitive function back? Energy?
Do I really have to store Mr Roboto upright? In my fridge? In its case?

Look at how thick the booklet is! Yowsa... I think I'll have some really good nights of sleep in the near future, with this as my reading material.

It's How Much? Shocking!

It's criminal how much is being charged for my medication. It's a good thing I was seated when my pharmacist called me the other day:

"Ms Newland?"

Yes, speaking.

We've just received your prescription. We don't carry this medication in stock, it won't be available for pick-up until tomorrow. Are you aware of how much it costs?

No.

$374 a week.

Pardon? A month?

No, a week. (I almost fall off my chair)

Do you want us to proceed with filling the prescription?

Ummm, yes. I think so. I don't know. How much again?

Have you advised your health benefits company of your Fair Pharmacare confirmation number?

No, I don't know if I have one or not.

Here's the phone number for Fair Pharmacare, you should call them and your benefits company right away to co-ordinate your coverage.

Thank-you very much for letting me know, I appreciate your help.

Click.

I'm stunned. Who can possibly afford this medication? If I had no extended medical coverage, it would be highly unlikely that I'd be able to go on the medication. It costs almost $20,000 a year. I'm very fortunate that 80% of the cost will be covered under my benefit plan.

So, after double-checking with my benefits plan, Fair Pharmacare and again with the pharmacist, I've got the the "all-clear" to pick up my vials of platinum. Now, if only the nurse would call to set up the appointment to teach me how to shoot up. Er, self-inject.

It Hurts To Tell...

How do you tell your baby that you're sick? Very sick.

Last week, on a quiet afternoon, I sat beside Daniel while he was reading on his bed. It seemed like a nice time to talk. He has been such a strong, supportive boy through my struggles this summer. From helping to guide me when I could barely see, to carrying things now that my left arm is weak. He's been my rock. I love him so much.

So, my conversation started there. Telling him how much I've appreciated his thoughtfulness, his help, his support. Then I asked him if he knew what was happening with me? He said he thought I've been sick. "Yes, there's a name for the disease I have. It's called Multiple Sclerosis." I almost broke down in tears, but I managed to hold them back. He doesn't know how scary this disease is or can be and I don't want to frighten him.

I curled up beside him on the bed. "Do you have any questions?"

"Is it called MS?" - yes

"Will you get better?" - yes, my vision is much better and I'm hopeful that my arm will feel better in a few weeks. But something else will happen to me as time goes on. Together we'll deal with it when the time comes.

"Can I enter the read-a-thon?" -what read-a-thon?

"Chick a Dee has a page about an MS read-a-thon to raise money. It's right here... look..." - let's check into it. I'm so proud of you for wanting to take action. Big hug.

Trying to Get Medicated and Thoughts on Sleeping

As usual, I’m playing the waiting game with the MS Clinic. This time though, I’m waiting to hear if my prescription has been faxed to my local pharmacy. Once the prescription is in place I’ll wait to hear from another nurse about setting up an appointment to show me how to self-inject the medication. I mustn't forget to ask her some questions about travelling with this medication and the necessary needles. Will I need a note from the doctor? Sounds like fun doesn't it?

I've been thinking a lot about the specialist that I see. I think I’ll request that I see a different neurologist next time around. Perhaps even at a different MS Clinic. Dr. Traboulsee just seems too focused on his many ongoing studies and not on his individual patients. While I understand that his study work may be groundbreaking, highly important... I just don’t feel like being a guinea pig. I want what’s currently on the market that works. I think it's unfair to push studies on newly diagnosed patients before they have even had a chance to come to grips with their diagnosis. Right now I’m feeling a little vulnerable, exposed, lost even. The rapidity at which my MS attacked me the second time shocked me. Clearly, my MS isn’t on the two year plan as I had hoped. The sooner I can get started with medication, the better.

Dr Blaney is hopeful that along with the meds and better management of my triggers (lack of sleep and stress) I'll be able to stretch out the remission periods and minimize the relapses. I'm to review information on sleep hygiene and get my sleep patterns under control. Okey-doke. Easier said than done. Here’s what I’ll try to achieve better sleep tonight: no caffeine after noon, no major exercise after dinner (that will be difficult to keep - ha!). Give Andy a bath and a nice big bowl of cereal. If Andy sleeps better, so will I.

From what I've read on other ms blogs, sleep seems to be a pretty big issue. What’s the deal with that I wonder? Why? I’m sure we’re not all lying there in the dark fretting about our futures. I’m not. I’m losing sleep wondering about the future, I'm concerned about being able to function the following day on next-to-no sleep. This morning is a perfect example of my zombie-like state after a very poor night’s sleep. I’m having difficulty articulating my thoughts, spelling is atrocious, even my foot felt funny on the gas pedal this morning. It was as though I couldn't get the van going - it just wanted to creep along at a royal snail’s pace, very much the opposite of my usual zippy, speedy commute. I felt like honking at myself. “Wake up! Get moving!”

I Can See, I Can See!!!

Ahhh, I'm so glad to present some good news.

My appointment yesterday at St Paul's went very, very well.

My vision has returned almost to my prescription and my blind spots have vanished. During the field-of-vision test the technician didn't need to comment "click the button the FIRST time you see the light." Yesterday, I felt like a button-clicking dynamo. While Dr Anderson didn't estimate the percentage of healing for my vision, he did say that I don't require a follow-up appointment. I'm to make an appointment when necessary. Yay!!!

Although at first I felt he was a very cold fish, he seems warm and personable yesterday. Could it be that his giving me good news has influenced my perception of him? Naw, couldn't be... However, with any luck I won't be requiring his assistance any more. I'll happily let my memories of the hallways and waiting rooms at St Paul's Hospital slip into oblivion. It's not that my treatment there was bad, it's just that I'm thrilled to have healed enough to not require a return visit.