Team Expansion / Bad Fatigue

Well, the good news first. My support team has grown to include a nutritionist. Her name is Marilyn Fuller. I have my first appointment on Oct. 12. She's going to help me get the food stuff right. As there is no diet for MS, she's going to help me find a diet that will get me back some energy in my days and help with sports training. That sounds great to me. I know it isn't a cure, or a be all end all, but every little thing you do helps in the end.

I'm still very very tired and fatigued. I'm having trouble staying awake in class this week or during a conversation with someone. I feel like the walking dead. I shuffle around and I'm moving but I'm so not there. I was looking forward to a hike on the weekend but I don't know if that's going to happen or not. I love hiking, its so freeing. It'd be good to get one more in before the snow comes. I'll do what I can to make it, but I just don't know at this point.

There is so much that is weighing on me. Life is getting difficult. All I want to do is sleep. But really, all I want to do is stop feeling dizzy, like I'm falling over. I walked into like 5 walls today. I hope nobody noticed. :S I had a few moments in the morning this week where I just felt like crying. But I refuse to cry alone or in front of crowds, so its all good. This dizzy feeling is making my regular life difficult. I want it to pass. Like even today, it was hard to get around. Though it was better than yesterday.

Sometimes I think people forget that things are difficult for me. That is by far hardly the rule, but the odd person does. When they realize, they often tell me not to over work myself. I wish I felt as good as I did at the start of the semister. Oh, I was ready to go. All full of energy.

Despite what I have been writing, I am staying positive. I don't want anyone to worry. :) It's just a temporary setback, until I get used to the meds and what ever else is happening passes. So everything will be ok. Regardless what happens next or on top of what is right now. So no worries. Cheers.

:)

Here's what's happening

Today is what I would call a "bad day" or "one of those days." It actually started last night around 11:00pm. I became extreamly tired and began feeling like I was nodding off. I put down what I was reading and tried to watch a little TV before bed. I kept getting the sensation like I was falling through my bed. I kept trying to self talk myself out of panic mode. I thought maybe it was the medication increase that was doing this. Anway, I kept at it until I finally just got out of bed at 1:00 am. I kept trying to tell myself I wasn't going to die, don't be foolish. But I rarely listen to myself.

I have no idea what spurned all this but I'll tell ya, today isn't much better. So here's the skinny:

I feel very weak in the muscles, especially legs and left arm. My eyesight is giving me trouble and I feel a little dizzy. And of course I am very tired.

Possiblities: 1. medication side effect
2. Relapse - having a MS attack
3. Losing my mind

While 3 dosen't seem like much of a possibility, 2 certainly is and I'm hoping it's only 1.

I missed school today because of this. I wonder if stress brings this on. I'm totally worried about my student loans. The papers havn't come yet in the mail and I need to get on this right away before too long. Money so stresses me out.

The course load isn't so bad, I mean I'm handling it ok.

I know I'm not getting enough exercise but I was going to start a remedy for that today until all this happened.

I went up for bloodwork and to reschedule my missed appointment with Jean, but both the lab and her office were closed. Perfect. They knew I was coming.

What I'm doing about it all:
Well, I'm going to continue to do as much work as I can in the mean time. I'm going to make an appointment to see Dr. Leckey ASAP. I'm going to take it easy and try not to panic. I felt so good on sunday (well not physically but I was pretty up in spirit) it's hard to place how I am now--this is all so sudden. But I guess that's the way MS works.

I can sit here and type all day how this is effecting me but what I really need is to get past it all so I can get back to "life" out there in the real world. Interesting... when did my disease become a part of an imaginary life. I think I need to work on that. Hasn't this thing been brought into my mainstream life yet? How long will that take? Sometimes I feel it slipping out, other times it is a part of who I am and I am comfortable with it all. Today, not so much.

Full Dose

Finally up to full dose. Had a bit of a night last night, with some headaches, mild fever I think and some definite unpleasentness, like muscle pains. Getting close to my first set of post Rebif blood tests to check my liver, to see if you body is handling the treatment.

The Optic Nuritus is still a problem and the blurry vision is most annoying but I'm still handling it. Still doing Judo, school, plays, teaching, etc... I wish my eye sight was a little better though, to speed up my reading at least. I have a lot of readings to catch up on.

I have some small injection site irritation on my stomach area. Just some redness around the entry site; nothing too serious I don't think.

Injecting into my legs has become a strange sensation, I think because I'm getting a bit of the muscle. There isn't much extra skin on my legs so I might try adjusting the needle depth just to see. Maybe I will call my Multiple Support nurse and see what advice she has for me.

I heard today about a new drug out that is supposed to help combat fatigue in MS patients. Any chance I can get some of that over here? Energy would be a welcomed visitor.

Thanks for the weekend support, Jess. Liked having you around as always! But stop falling asleep so early, I'm the one with energy issues, remember??? ;);)

Update

Current Meds:
1. Rebif (50%) X 3 per week
2. Tylonol (With Rebif shot)
3. Citalopram 15mg

Current Symptoms
Physical: fatigue
Sensory: Optic neuritis in left eye
Psychological (memory/mood): difficulty concentrating
Medication side effect?: headache.

I had a pretty bad headache today. I speculate it is from my injection last night. I've been so tired lately too. I need to get more physically active I think. It will be really hard at first but I think in the long run it will be better for me. I have energy when I need it but I'd rather have it all the time rather than just when I force it out.

This Friday is my first injection with 100% of the solution. I feel a little nervious about that.

I missed my appointment with Jean on Monday. :S I was so caught up in school that I forgot to plan for my doctors appointments in my book. I'll remedy that soon and reschedule the appointment. I felt aweful about forgetting that.

I've also increased my Citalopram dose as well. Moving it up to 20mg. That will make me drowsy for a while, so no help there for the energy. I have to pace myself and start taking afternoon naps so I can get work done in the evening. I'm glad I'm not working more than I am, with my course load and the play in progress, I have only enough time for what I am doing.

Thanks everyone for the positive responses. I appreicate reading them. :) Continue.

Activity and Clinical Pharmacology of Rebif

To my science friends: more than you wanted to know about Rebif.

Rebif (Interferon beta-1a) is a purified , sterile glycoprotein product produced by recombinant DNA techniques and formulated for use by injection. The active ingredient of Rebif is produced by genetically engineered Chinese Hamster Ovary (CHO) cells. Interferon beta-1a is a highly purified glycoprotien that has 166 amino acids and an approximate molecular weight of 22,500 daltons. It contains a single N-linked carbohydrate moiety attached to Asn-80 similar to that of natural human Interferon beta.

The specific activity of Rebif is approximately 0.27 million international units (MIU)/μg interferon beta-1a. The unit measurement is derived by comparing the antiviral activity of the product to a in-house natural hIFN-B NIH standard that is obtained from human fibroblasts (BILS 11), which has been calibrated against the NIH natural hIFN-B standard (GB 23-902-531).

Interferons are a family of naturally occurring proteins, which have molecular weights ranging from 15, 000 to 21,000 daltons. Three major classes of interferons have been identified: alpha, beta, gamma. Interferon beta, interferon alpha and interferon gamma have overlapping yet distinct biologic activities.

Disposal of needle. Thus ends the photo journal of self injection.

Doing the deed...

Loading the needle into the auto-injector.

Injection equipment, ready for the use. (Needle, alcohol swab, needle clip, auto injector, disposal unit)

up to 50%

Current Meds:
1. Rebif (50%) X 3 per week
2. Tylonol (With Rebif shot)
3. Citalopram 10mg once daily

Current Symptoms
Physical: very mild tremors, fatigue, stiff legs
Sensory: Optic neuritis in left eye
Psychological (memory/mood): difficulty concentrating
Medication side effect?: Fever/chills, aches and pains, nausea.

Just a note. 50% sucked last night. I don't like being sick. But at least one person was able to restore my "faith" in humanity this morning. A lot of bad things happened last night and they've left me feeling rather exposed and unsure about much. So many uncertainties. And I'm running on very little sleep.

Citalopram failing... what the hell is going on in my head???

Uh oh... someone needs a hug. ;)

Anyway, there's no amount of chocolate in the world...

Tired

Current Meds:
1. Rebif (20%) X 3 per week
2. Tylonol (With Rebif shot)
3. Citalopram 10mg once daily

Current Symptoms
Physical: very mild tremors, fatigue
Sensory: Optic neuritis in left eye
Psychological (memory/mood): difficulty concentrating
Medication side effect?: slight injection sight reaction.

I'm tired. I'm stressed. That was the bottom line at Dr. Christians today. I guess a lot of things are finally catching up with me.

He increased my dose of Celexa. Actually, I made a mistake telling him I was on 20 mg when I should have said 10mg. So I have to get that sorted out before I go pick up the new perscription. Which is fine by me because I'm about to increase my Rebif dose to 50% and no one's quite sure of the drug interaction yet. I like being a test subject. Not!

Anyway, I really hope this Celexa increase will work for me once I get the right dosages adjusted. Just feeling blah, and not very positive. I feel kind of lonely and useless today. I guess everyone has those days. But for me, this day just keeps going, right throught the week.

Where are the horns that were blowing?

Thanks

Current Meds:
1. Rebif (1 injection 3 times a week)
2. Tylonol (With Rebif shot)
3. Citalopram 10mg once daily

Current Symptoms
Physical: very mild tremors in left hand (usually worsens with physical exertion)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: slight injection sight reaction.

A big thank you to my friends, colleagues and prof's at the University. It was good to see you all again. Looking forward to another year!!

Several injections later, I've learning something about my injection sites. I was talking to Lynn, my support nurse, today and told her it was difficult to inject into the triceps area. She told me that most men have trouble with this becuase of muscle mass and that if I couldn't do it to use my "love handles" if I had them. haha. Yeah, I have them...

SO that should make it a little eaiser.

The injections are going well, I've hardly had any difficulty with the Rebif. Only that one time I had some nasty aches and pains. When my dose increases it may affect me a little more. I should be able to handle it given how I've done thus far. I'm currently taking only 20% of the injection and will be starting 50% on friday. Hopefully my body will be ready for it and it will go smoothly.

By the way, I'd hate to do this without ice... ouch! Get's a little painful at times. But it is not killing me. For anyone who has never selfinjected before: in the beginning it is totally a mental challenge to stick hollow steel into your skin and inject fluid. It only hurts for a second so it gets kinda fun (but I'm a bit of a nut that way). Thank you judo for making pain a funny thing!!