Life with MS & EDS

July 28, 2011

Goodbye Rebif

Filed under: Uncategorized — by mseds @ 8:12 pm
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In a modest white house,

There was a fridge with blue containers

Stocked with hated Rebif shots

and a woman sick of dealing with…

 

Evenings wasted each week – three

The need to drink water til the constant need to pee

 

Heat packs and popping two Aleve

Itchy shot spots nothing could relieve

 

Shot spots that were also black and blue

Constant fears of waking with the flu

 

An auto-injector that’s too powerful

A medicine’s whose effectiveness is rather doubtful

 

Goodbye hate and fear.

Goodbye drinking til my pee is clear.

 

Goodbye Aleve.

Goodbye time thieve.

 

Goodbye auto-injector contraptions.

Goodbye injection site reactions.

 

Goodbye flu-like side effects.

Goodbye mounting skin defects.

 

Goodbye six full sharps containers that live on top of my fridge.

(Oh wait, I’m stuck with those since no one will take them from me!)

 

GOODBYE REBIF!

 

Here I come, Gilenya! Hope you and I get along well!

(Obviously inspired by, “Goodnight Moon”)

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June 28, 2011

Dear Rebif

Filed under: Uncategorized — by mseds @ 8:38 am
Tags: , , , ,

Dear Rebif,

It’s time that we part ways. I’m moving on as you don’t fit well in my life.  You are far too high maintenance.  You waste three nights a week and the occasional next morning.  If you were as easy to inject as insulin, maybe I’d keep you around, but you’re not.  Before injecting, I need to make sure to drink at least 2 liters of water, sometimes closer to a gallon.  If my pee isn’t clear, I won’t inject.  I have to take 2 Aleve, warm the injection site with a heat pack, rub on alcohol, wait for that to dry a bit, then finally inject, endure the pain, put heat on again, and ensure to go to sleep within an hour so that you don’t make me sick. For months you gave me the flu.  Yes, it was gone by around 11 the next morning and yes, it’s a rare occurrence now, but I still need to plan for the chance you’ll wreck my sleep and the next morning.  You’ve also abused me.  I am tired of the itchy red spots that turn black and blue.  I bet people think my husband has been abusing me, but no, that’s all you, Rebif.  I’ve had enough.  I can’t even tell if you are doing any good and studies are questioning if you are of any use.  I’ve thankfully had no disabilities (unless you count Optic Neuritis) since my symptoms arrived in 2001.  I took nothing until 2008 (not intentionally, but that’s another story) and can’t say I’ve noticed any improvements since starting injections for MS.  You can take it personally if you want, but it’s not just you.  I dumped Copaxone before you.  You CRAB (Copaxone, Rebif, Avonex, and Betaseron) drugs just aren’t my type.  You’re cramping my quality of life.  It’s time to try something new.  I’m going to give Gilenya a try.  Hopefully the pill will be more my speed.

Take care,

Ivy

 

April 11, 2011

I did it!

Filed under: Uncategorized — by mseds @ 8:52 pm
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I finally did it!  The up side of doing 20 days of Lovenox injections without an auto-injector is that I was finally able to do a Rebif shot without the autojector!  I pinched an inch, put the needle in, slowly pressed the plunger (was still to wimpy to do that quickly), pulled it out, let go of the pinched area and there wasn’t any pain!  I’m not quite ready to self-inject other body parts, but will keep doing it this way on my stomach.  I’m curious to see if I bruise any less.  I still have a lot of black-and-blue marks from the Lovenox injections, so I’m not convinced this is going to make one bit of difference, but it will be an interesting experiment.

October 24, 2010

Tucks – A Rebif Tip

Filed under: Uncategorized — by mseds @ 8:29 pm
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I’m so sorry I’ve not written much lately.  I’m quite far behind in things I’ve wanted to post.  I got a great tip about Rebif site reactions that I just had to pass along.  If your injection site gets red and itchy, get Tucks pads and rub it on the spot.  It stops the itching immediately for me and keeps the itch away.  It’s the only thing I’ve tried that works for me, so I had to share this tip!

September 8, 2010

What’s one more pill?

Filed under: Uncategorized — by mseds @ 9:46 pm
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I used to hate swallowing pills.  I think that’s why I avoided vitamins for so long.  Then came injections for my MS.  After Copaxone and now Rebif, what’s a few pills?  My New Year’s Resolution was to start taking a multi-vitamin every day.  So far, this is the only New Year’s Resolution I’ve ever kept.  I added extra Vitamin D to that routine, so I now take 3 pills every day.  On Rebif shot nights, add to that 2 Aleve.  I’m up to 5 pills some nights.  So, what’s one more?

I recently read about Vitamin B12.  Until learning about CCSVI, I never would have thought to look into B12.  The more I learn about MS and CCSVI, the more it occurs to me that we need to be looking at the whole body.  MS is a complex disease and cannot be looked at through the narrow Central Nervous System lens.

Symptoms of a Vitamin B12 Deficiency are very similar to MS symptoms.  Per Wikipedia:

Neurological signs of B12 deficiency, which can occur with or without anemia, include sensory disturbances (due to damage to peripheral nerves caused by demyelination) and irreversible nerve cell death. Symptoms include numbness and/or tingling of the extremities, altered proprioception, impaired sense of smell, loss of appetite (anorexia), disturbed coordination and, if not treated in time, an ataxic gait especially in the dark when there is less visual reference[2]. In extreme cases, B12 deficiency can lead to a syndrome known as subacute combined degeneration of spinal cord.

B12 deficiency can also cause symptoms of mania, psychosis, fatigue, memory impairment, irritability, depression and personality changes.

Not all of these symptoms overlap with MS, but the majority do: fatigue, depression, sensory disturbances, demyelination, tingling of extremities, and so on.  Neurologists are just recently starting to talk about the importance of Vitamin D, but why on earth are they not mentioning B12?  My suspicions about neurologists continue to grow.  Why is it that the are so quick to prescribe expensive injections and other medications when something as simple as popping vitamins isn’t even mentioned?  It’s completely frustrating.

I’ve also learned that B12 plays an important role in anemia.  I’ve always just thought that was iron-related.  I’ve been anemic my whole life (I haven’t eaten red meat since I was 12 and rarely ate it before then.)  Every blood test I’ve ever had has shown that I’m anemic.  While pregnant I was told by my OBGYN to take iron, but no one ever mentioned B12.  At least the OBGYN was willing to discuss vitamin supplements, unlike my neurologists.  Dr. Specialist sees my quarterly Rebif bloodwork results, which always show anemia, and she just blows it off.  Dr. Generalist and my general practice doctor have ignored that, too, even though I’ve specifically asked each of them about my iron levels.  Again, very frustrating!

Speaking of anemia, from what I’ve read, B12 deficiency can occur with or without anemia, so you can’t only go by your regular labwork reports.  It looks like I am going to have to ask them to specifically check my B12 levels.  Not that I want them to take yet another vial of blood, but it seems that this information would be at least as critical as knowing whether Rebif is killing my liver, right?

The more I search on the benefits of B12, the more blogs and other websites I find that talk about the relationship between B12 and myelin.  Wikipedia has an interesting scientific explanation about the relationship between myelin and B12.  It’s a bit over my head, but still worth a read.  I wish I would have come across this information sooner.  I wonder what else is out there that is so painful obvious and simple to address that I’m missing because I’m not informed enough to know to go look for it?  If it wasn’t for my mom-in-law mentioning B12 and sharing an article, I never would have thought to Google it in the first place.

In honor of the Jewish New Year, I’m adding onto my New Year’s Resolution and adding B12 to my routine.  I hope B12 is as great as Vitamin D has been.  I’ll keep you posted!

August 20, 2010

CCSVI – 3 Weeks After Angioplasty

Filed under: Uncategorized — by mseds @ 4:07 pm
Tags: , , , ,

I must admit that today is the first day I’ve felt exhausted.  However, given the day I’ve had, I think anyone would feel exhausted, so I’m trying not to read anything into this.

The day started with Little Sister waking up with what seemed to be a couple of sores on her left arm that didn’t look right.  They seemed to have pus in them.  She complained that they hurt.  Her skin looked irritated, so I covered two spots with band-aids and called the doctor as soon as they opened.  I swear calling the pediatrician for an appointment is like trying to get concert tickets before the Internet.  I managed to get one of their first appointments, so we got ready for the day and rushed out of here.

While at the doctor we talked about her various skin problems.  She’s only 6, but psoriasis and it’s been pretty bad this summer.   Hydrocortisone  cream 2.5% seemed to clear a lot of it up on her back, neck, front, and arms, but it still looks bad behind her ears and on her belly button.  She has terrible cradle cap on her scalp, too.  We’ve been using Head & Shoulders every other day this week, but no progress yet.  So, we had a long discussion about Little Sister’s skin and will be going to the dermatologist in a few weeks.  The doctor managed to clean off the gross looking areas on her arm and eye lid.  I wasn’t about to chance that at home and thankfully the doctor didn’t think I was crazy for not attempting that before calling.  There’s a good chance that they were just boogers (go figure), but she said that they hurt and I wasn’t about to question her.  It’s really hard to know what physically hurts her and what is a sensory reaction.  I swear if you put fake blood on her skin when she wasn’t looking and then she noticed it, she’d say it hurt and would cry.  If even the slightest thing looks wrong on her body, that’s just as bad as something actually being wrong.  I still don’t understand sensory processing issues, so she throws me for a loop every now and again.

After that we headed to camp and of course encountered road closures along the way.  It’s nice that they are fixing our roads, but driving around the area right now is challenging.  Thanks to the GPS, we only drove around an extra 10 minutes.  As soon as I dropped them off and was glad to get back to work, I remembered that I had to get to the dentist!  I was so focused on my daughter that I forgot about me.  At least I remembered with 45 min. to spare before having to leave.

Things went well at the dentist.  I needed 2 fillings, both on the right side, but top and bottom which required 2 separate shots of novocaine.  He apologized for the pain and I said it hurt less than my Rebif shots.  I think this is the first time I’ve had dental work done since starting any of the CRAB drugs.  It was kind of shocking to realize that novocaine hurt less than Copaxone or Rebif.  We had a nice discussion about how there needs to be pills for MS treatment and branched into a discussion about how messed up it is that pharmacuital companies aren’t in the business of helping people, but are all about their profit margin.  It was a nice way to pass the time.

I left the dentist with the whole right side of my mouth and most of that side of my face numb.  If that wasn’t enough, I’ve been having MS problems with my mouth again.  This week was the first time I’ve noticed this in a while and certainly the first time since angioplasty.  My upper lip, left side gets pins-and-needles that come and go.  This week I’ve noticed that this part of my lip hangs lower than the other side, although not consistently.  I called Dr. Generalist earlier this week and we decided that monitoring it was the best approach at the moment.  I don’t see any reason to go on steroids for this.  My MRI in June was clean and I don’t have any other relapse signs.  The only good part about all of this is that I could justify a Rita’s Gelati for lunch.  Yum.

The moment I pulled into the driveway, my cellphone rang.  It was camp.  I needed to bring Big Sister a change of clothing.  Lovely.  Just what I wanted to do was another trip to camp.

I managed to put in another hour of work before going back to camp to pick the girls up for the day.  Now I get to make dinner (as soon as I can feel most of my mouth again) and wait for Little Sister’s new DAFOs to be dropped off.

What I really want to do is crawl into bed.  But, that’s not quite an option yet.  I can’t wait for my husband to get home from his business trip.  I handled the rest of his trip just fine.  I was proud of how much energy I had and that I was doing things so well.  Then today came.  I need to remember that opening my veins didn’t make me superwoman.  It certainly helped me a lot, but I shouldn’t expect to be invincible.  I think anyone would be tired after all of this and I just need to keep reminding myself that even typical people become exhausted every now and again.

August 4, 2010

CCSVI – A Few Days After Angioplasty

Filed under: Uncategorized — by mseds @ 8:34 pm
Tags: , , , , ,

I had intended to try to write every day, but have been quite busy and have had less time at my laptop than I expected.  Day 2 after angioplasty brought a trip to a new children’s museum with the family.  I walked around all afternoon, making myself sit down every now and again so that I wouldn’t push it.  I would have felt even more fantastic if it wasn’t the day after a Rebif shot.  I’ve decided that my Rebif side effects are even more annoying now that I know how good I can feel.  Rebif side effect on an already worn-out me were annoying, but they are far, far more annoying on the new me!  Although I take Aleve before my shot, when I stay up too long after my shot, I get the chills, my teeth chatter, and I feel awful.  This was the case Saturday night.  I’m so used to my fatigue sending me to bed early and have basically forgotten what the signs of “normal” tired feel like.  I did my shot at my regular time, but was so awake that I stayed up until 11:30.  Then I was suddenly nauseous (that was a new thing) and had the chills!  Whoops.  Note to self: ensure to go to bed within 1.5 hours of doing the Rebif shot.  I was nauseous again in the morning in addition to my normal fever of around 100 degrees and feeling achy and worn out.  Post-angioplasty is the first time I’ve ever had nausea as a side effect.  Lovely.

Okay, enough venting about Rebif and back to how great I feel otherwise.  Since angioplasty, I’ve had much more energy, my hand and arm strength have improved, my appetite has significantly decreased, and my sense of smell is far better than it’s been in years (yes, I know, that’s strange!)  Don’t get me wrong, I still get tired.  I was yawning away this afternoon.  I was hoping that my incessant yawning would go away after angioplasty, but it hasn’t.  It’s decreased, especially the first couple of days, but it’s apparently not gone.  I’m trying not to read anything into that!

One of the best things is that my stress is gone.  I’ve been feeling some level of stress since I first found out about CCSVI.  First I couldn’t wait to find out what my veins looked like.  This past April I finally got that answer.  Then I was stressed about finding someone to fix them.  Now that they are fixed, the stress is gone!  Sure, I’m a little worried about when/if they are going to close again, but for now I am really enjoying my victory.

I was quite interested to see how my neurologists were going to react when I told them I had angioplasty.  I know neither of them is on board.  Today was my six-month check up with Dr. Generalist (my local neuro.)  As I was sitting down in his office he asked me how I was feeling and if anything was new.  I opened with, “I had my veins fixed,” and he looked at me curiously.  I went on to tell him the story and about how great I was feeling.  Much to my surprise, he didn’t have a negative reaction.  He actually seemed interested.  I was his first patient who was persistent enough to not only do the research, but to do something about it and he was impressed by that.  I don’t think he’ll be sending patients off for angioplasty any time soon, but I think he’s going to be open minded and follow the research and how I’m doing.  I can live with that.

He also gave me a tip about managing Rebif side effects.  I’ve only been taking 1 Aleve (220mg) before a shot.  He said to try 2 Aleve one hour before a shot and to take another Aleve if I’m up in the middle of the night (which of course I am because I drink so much water before a shot that I have to pee by 4 a.m.!)  I’ll let you know if the extra Aleve helps at all.  Since he seemed to be in an open-minded mood, I decided to push it and asked about LDN.  I got the same response I got from Dr. Specialist — some seem to do well on it, but there’s no scientific proof, so I’m not on board with prescribing it.  Oh well.  One battle at a time.

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