Life with MS & EDS

February 25, 2009

Alternative Shot Locations

Filed under: Uncategorized — by mseds @ 12:42 pm
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Okay, I give up.  The outer sides of my thighs were no better than the top.  I feel like I have a new Tuesday routine.  I spend all of my free time (which I don’t have much of) analyzing my body fat to determine alternative shot sites.

Last night I had a conversation with my husband that I never in a million years expected to have.  “Tush or thighs?” I asked him.  He looked at me funny and declined to answer since it’s my decision to make.  I explained that I don’t think thighs are an option anymore and it’s time to find other body fat.  So, we went on to discuss other fatty locations.  I never would have thought, “Yes, that looks fat to me” would be a good thing to hear from him!  Realizing that I was already using the other fatty locations, my bottom seemed to be the only place left to try.  Not being able to see my own bottom very well, I asked him to help me pick a spot.  My criteria: 1) not close to the center as to avoid the sciatic nerve, 2) not near a visible vein, and 3) can pinch at least an inch (that’s not a problem!)  I know it was as strange to ask the question as it was for him to answer it, although probably stranger for him.  Never before has looking at my tush been that un-sexual!  He found a spot that looked promising and I sat on the heat pack for 5 min.  Then I realized that although I am pretty bendy (thank you, Ehlers-Danlos), doing the shot there myself wasn’t wise.  So, I asked him to do it.  I’ve had him press the AutoJect button once before while I held it, but never has he actually done the shot for me.  There was a bit more blood than usual (that could have just been the nature of the spot), but otherwise the shot went very well.  The pain was completely manageable and I’d rank this as good as arm shots for me.

I have 3 more scheduled thigh shots before I finally see the specialist and plan to replace them all with tush shots.  I have zero medical advice to go on for this one since the Shared Solutions folks can’t comment, but it is so much better than thigh shots that I’m just going to keep doing it.  I feel strangely rebellious.  I’m not usually one to stray from medical advice, but I just can’t imagine that doing something that hurts that much is good for me.

February 23, 2009

MS Walks

Filed under: Uncategorized — by mseds @ 8:15 am
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I was looking at the list of upcoming MS Walks in my area.  There’s one at a zoo not far from here and it’s a 2 mile walk.  That sounds like a great goal for me.  Until I found out I had MS, I had always planned to walk the Breast Cancer 3-Day which is a 60 mile event.  I’ve accepted that this goal has to be revised, so I’ll continue to crew that event.  My daughters know that I crew the 3-Day and that our friends walk in memory of our friend Karen and to raise money to eradicate a horrible disease.  They are proud of me for helping.

I’d love to tackle a 2 mile walk.  A zoo sounds like a perfect location.  It would be a fun way to raise money and awareness and the girls have enjoyed that zoo the other times we’ve been there.   As I’m thinking this through, it occurs to me that the 2 miles wouldn’t be the challenging part.  The bigger challenge would be how my older daughter would take this.  She doesn’t know that I have Multiple Sclerosis.  She just knows that something is wrong with my eye and that I’m taking shots for it.  She’s almost 8, but freaks out very easily and we saw no reason to stress her with giving this problem a name.  That’s the tricky part.  Doing the “MS Walk” would give this a name.  She couldn’t handle knowing that Mommy has something that people do walks for.  To her, walks are for people with serious illnesses, things like breast cancer that killed our friend.   MS certainly isn’t killing me.

My friend offered to do the MS Walk with me at the zoo and have the guys do something else with the kids, but it would make me too sad to do it without them there.  I’d want them there cheering me on.  I’m still struggling with hiding my MS from them.

So, I looked into something else, assuming that the Walk is just going to have to wait a little longer.  One of the big events in the area is the City-to-Shore Bike MS.  Our family is fortunate to have access to a house in Ocean City, NJ, the “shore” location for this event. We’re often down there the weekend of this event and see the riders on the boardwalk.  I always thought these folks were doing such a great thing.  A friend of ours has done the ride and it sounds pretty neat.  Instead of doing a walk this year, I think I’ll try to volunteer to help out with this event.  It would be a great way to thank all of them for what they are doing.  It never occurred to me that this event would someday benefit me.

February 17, 2009

One More Reason I Don’t Like my Thighs

Filed under: Uncategorized — by mseds @ 1:52 pm
Tags: , , , ,

I’ve been on Copaxone for a week and a half now.  Last week was about as crazy as it gets for us, which was both good and bad.  It didn’t allow me a lot of time to focus on starting the shots.  I just had to do it.  Work was very busy.  Big Sister got sick on Monday and was sent home from school.  Last weekend, Little Sister found my 2 pound dumbbells and before we could stop her, swung them behind her pinching her middle finger in the process.  It’s swollen, but thankfully not broken.  I was amazed at how well she did during x-rays.  Since it was badly injured, she has her right, middle finger taped to her ring finger for two to three weeks.  Thankfully she’s a bit ambidextrous.  She’s used to switching to her left hand when her right gets tired from her hypotonia, so this isn’t quite the inconvenience this could have been.  Just when I thought our week was going poorly enough, my husband’s grandmother passed away.   That obviously took a lot of our time and energy toward the end of the week.  Now, other than Big Sister still being sick (now it’s an ear infection), things seem to be calming down a bit.

The last time I wrote, I was getting the hang of things.  I figured out that applying heat for 5 minutes before the shot, then using a cotton ball for about a minute before applying ice until the ice pack wasn’t cold anymore seemed to do the trick.  The shots stung a bit, but all was going well.  That was because it was before I got back to doing my thighs again.  I’ve always hated my thighs and now I have one more reason to hate them.  Shots there HURT!  I’ve not yet managed to get the right depth or the right location or something, but I really dread Tuesdays and Wednesdays (those are my leg shot days.)  After pain on Tuesday night, I got so flustered preparing for the Wednesday shot that I pulled the red cap-remover off the AutoJect before the thing was tightened together and the needle went flying out the back end and landed in my sweatshirt!  Needless to say, I had to through that one out. It was far from sterile at that point and I think some of the medication came out, too.

The next day I called the Shared Solutions folks.  I requested a replacement dose (they’ll send one for free this time, but I’m not sure what they do if I mess things up again.)  I also asked for advice.  I would love to find another body part to use instead.  They said I’d have to ask my doctor.  Of course the doctor I see now doesn’t know anything about doing these injections, so I think I’m stuck (ha) until I see the specialist in March (3 weeks from tomorrow and counting!)  They also said to make sure I wasn’t getting close to the inner thigh, but said nothing about the outer thigh being off limits.  Hmmm, there is more fatty tissue there….  I called my “peer” contact last night (she’s been great!)  She suggested making sure that my leg was relaxed when doing the shot so that the muscle is not tight at the time.  I had not thought of that, but I’m sure it’s been tense.  I will have to give that a try tonight.  If anyone has other thigh tips, please pass along words of wisdom!

During the craziness of last week, I did have a milestone.  It was the first time I did a shot 100% by myself.  Thankfully it was an arm night.  I find those and the stomach to be the easiest.  My husband was at his grandmother’s viewing, so I had no choice but to do it myself.  I usually rely on him to know I am at a 90 degree angle, that the site looks good, etc.  He also always helps me with clean-up so that I can focus on hanging out with the ice pack.   For the arm, I found that sitting on the floor with my arm straight out, wrist resting on the sofa works well.  Now if only I could find a thigh trick!

February 7, 2009

Getting Better at This

Filed under: Uncategorized — by mseds @ 9:06 am
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Day 2 on Copaxone was similar to Day 1.  The injection site was Left Arm.  I did the heat pack for about 3 minutes and then did the injection.  I went up to an “8” on the AutoJect since Day 1’s “7” wasn’t deep enough.  Some of the medication still seeped out.  Within 2 minutes, the stinging started and it lasted for about 20 minutes.

But things improved on Day 3.  The Shared Solutions folks called yesterday afternoon to see how things are going and to ask a few survey questions.  I explained Day 2 and they said that if I can pinch 2 inches, to go up to a “10”, but cautioned against going into the muscle and explained how that would feel (not good from the sounds of it!)  They also offered to send me anything else I may need.  I asked for 3 locked fridge boxes (those are on back-order), a travel kit (which hold 15 doses, I think), an extra AutoJect (just in case), and another ice/heat back.

Fearful of going too deep, I went up to a “9” on the AutoJect.  This time it was the Right Arm.  I’m right-handed and while I do pretty well with my left hand I was still concerned about how this would go.  I increased the heat to 5 minutes, then did the shot.  No seepage!!!  No blood!!!  “9” seemed to be the right depth for my arms (that or I got lucky).  After a couple of minutes I applied an ice pack and kept it on for about 15 minutes.  The stinging started soon after the shot, but was very manageable with the ice pack.  Hopefully this routine will work well again tonight.

My husband has been helping me out with the shots.  He helps with the prep and clean-up.  I also need his judgment about what is a 90 degree angle because I usually cannot tell.  Having someone to review all of the steps with and to make sure I’m not forgetting something (which I tend to do when nervous) has been wonderful.

February 4, 2009

First Day on Copaxone

Filed under: Uncategorized — by mseds @ 6:31 pm
Tags: , ,

5:40 a.m. – The school district calls to say there’s a two hour delay (we finally got a decent snowfall.)  So much for sleeping in a bit longer.  If I’m woken up after 4 a.m. or so, I can’t get back to sleep.

7:30 a.m. – 1:00 p.m. – Ate lots of chocolate and tried not to think about the shot.  I eat chocolate when I’m nervous, or upset, or worried, or… you get the picture.

1:15 p.m. – The nurse arrives to do the training.  She was extremely nice and very knowledgeable.  She was reassuring and comforting.  I cannot imagine someone would last long in this business if they weren’t.  She walked me through a booklet they have put together about doing the Copaxone injections.  We practiced on this round blue thing with placebo syringes using the AutoJect and doing it without the device.  We talked about the various injection sites.  I was hoping to avoid the arms, but it doesn’t seem like that’s advisable (although I’m not sure why.)  She showed me proper injection techniques, including making sure I wash my hands, swab the site with alcohol and let it air dry while getting the rest of the stuff together, etc.  She gave me a hot pack, but we didn’t use it for this first time.

Then it was time for me to actually do the injection.  I’m  a wimp and know this.  I easily get nervous.  I stalled a bit.  Then I finally held the AutoJect on my left thigh and eventually pushed the button.  It REALLY stung!  I’ve never been stung by a bee (thank goodness), but apparently that feeling I had from the shot is what that’s like.  I got slightly light headed (but that’s nothing unusual for me;  I get dizzy just standing up), but that passed quickly.  That stinging feeling lasted for about 15 or 20 min.!  There was a bit of seepage and a drop of blood after the shot, so I need to adjust the depth of the AutoJect next time.  We started at about 7, but I carry all of my excess weigh low, so I’ll have to go up to 8 next time.  Lesson learned.

6:15 p.m. – I’m feeling okay now.  There’s a red mark on my leg, but it’s no different than when I got allergy shots and its fading.  I’m tired, but was woken up crazy early so I’ll blame the fatigue on that.  I’m glad I know what to expect now.  I’ve always had a fear of the unknown and am generally not a risk taker.  Now that I know what to expect, I think I’ll be able to handle this better tomorrow for my next shot.

February 3, 2009

Medication Arrived

Filed under: Uncategorized — by mseds @ 10:07 pm
Tags: , ,

My first shipment of Copaxone arrived today.  Three boxes of it are now sitting on the top shelf of my fridge, hopefully out of reach of the girls (I couldn’t order the locked fridge boxes yet.)

I didn’t mention anything to my little one, but I did finally say something to my older daughter.  She’ll be 8 years old soon.  She knows something is wrong with my eye and we’ve left it at that.  Today I told her that I am going to start medication tomorrow to help my eye and that it was in those blue boxes.  Then I showed her the red sharps box that is on top of the fridge, which is when I said that the medication is shots.  She looked really concerned.  Then she said, “shots in your eye?!?”  Then I clarified that although they are for my eye, I get to do the shots in my legs, tummy, arms, hips, etc.  She was much better after that.  She knows a couple of people who take insulin, so I explained that it’s just like that.  She hasn’t asked about anything else, so hopefully that was a good enough explanation for her.  She’s a very emotional kid who worries more than she should for her age.  I hope we get to keep this simple.

I’ve always hated having things hid from me.  I’m an only child and still feel like I get treated like a kid sometimes.  My family doesn’t tell me the important things that are going on and always try to shelter me.  I didn’t ever want to do that to my girls.  I hope that as they get older that I can be more open with them.

Tomorrow is training day!  I’m more nervous than I expected (hence the spiked hot chocolate and slice of chocolate cake I’m having for bedtime snack.)  Hopefully I’ll be calmer tomorrow.

February 2, 2009

Blog Amnesty Day – Celebrating MS Blogs

Filed under: Uncategorized — by mseds @ 2:32 pm

I’m grateful for the big blogs in our MS Carnival who have taken us little folks under their wing.  Their guidance and wisdom are extremely appreciated.  From one little guy to the next, here’s to Blog Amnesty Day – February 3, 2009!  Check out these great blogs that you may not have had the chance to explore:


A Florida Journal

A Short in the Cord

A Stellarlife

Access denied-living with multiple sclerosis

AnnSawyer’s blog | The MS Recovery Diet

At Last! Time to Deal With Multiple Sclerosis by Homer

Atypical Multiple Sclerosis by Cindy


because I think I have something to say…

Behind Blue Eyes by Zee

Bifurcate In The Road

Blindbeard’s Multiple Sclerosis Blog

Brain Cheese

Brass and Ivory

Breaking The Dress Code by Katja

Bubbie’s Blog

bugs, bikes, and brains


Camille’s MSadventures

Can You Hear Me Now? by Donna

CarePear by Carolyn

Carnival of MS Bloggers

Carole’s MS blog

Carolyne’s MS Odyssey

Chain Reaction

chapter 7 – the daily tissue

Chemo is Not a Pony – (HiCy) patient

Clods and Pebbles

Conquer Multiple Sclerosis

Curiouser and Curiouser- Life with M.S

Curmudgeonette by Pamela


Dancing with MS by Lazscott


Delving Under the Covers by Charlene

Did you know Montel Willams has that?

Disabled Not Dead

Down the MS Path

Emms’ Bits

Everyday Life With MS by Lora

Everyone Here Is Jim Dandy

Fingolimod and Me


God Lives

halt stop forget relax

Hazel is in the Eye of the Beholder

I hate MS

If You’ve Got It, Flaunt It!

I’m an MS Activist


Irreverence is Justified


It Is No Bad Thing To Celebrate A Simple Life by Pam


Jen’s MS blog

Jim’s DEEP Thoughts

Judi B’s blog

Libbi’s MS Journey

Life with MS & EDS

Life with MS – Trevis

Living Life as a Snowflake

Living Life One Day At A Time

Living Life with Multiple Sclerosis

Living well with Multiple sclerosis

Living With MS by Lauren

Living with Multiple Sclerosis by Laurie

Living! with MS


Looking Forward with Multiple Sclerosis

Lorna’s Blog



Managing Multiple Sclerosis

Mark and MS

Maybe I’m Just Lazy: One Woman’s Journey Through MS and Life

Me, myself and MS

Melissa Summers

Merely Me’s Writing to Survive

Messy Stuff: A Life with MS and Other Ramblings

Mima’s doings

MS AND ME. by MS Mom

MS and Zen

MS Dissonance by Shannon

MS Maze by Mandy

MS Musings

MS News and Notes by Deb

ms not just a diary.

MS Observer

MS Strength by Jen

MS. by ME

Ms. Jan

MSB’s Podcast by Charles

MS~LOL: Life Of Learning by Amy

Multiple Sclerosis

Multiple Sclerosis

Multiple Sclerosis

Multiple Sclerosis & Faith

Multiple Sclerosis & Life

Multiple Sclerosis Blog by Charles

Multiple Sclerosis Notes

Multiple-Sclerosis-Chiefs-Oracle-Dad by Jamie

My beloved monster and me…

My Demyelination

My husband’s health (and mine now too)

My Journey with MS

My Journey with MS

My journey with Multiple Sclerosis

My Journey: Living Well with MS by Diana

My Life and Dealing With MS

My MS Journal

My Story of Life with Lyme and MS


Navigating the Journey of MS

Newly Diagnosed MS

No Empire No More

No time for MS

One Crazy Chick

one life

Persnickety by Dianne

Perspective Is Everything

Planning The Unpredictable

Pook & Lexi by Cynthia

Postcards of my Life


Rayne’s World by Jayme

Real Life & Loves, Living With Multiple Sclerosis

Reality Chick by Keli

Rebooting Kathy

Retired Waif

Ricks MS Weblog

Say It Isn’t So by Mouse

Serina’s Blog

Shake & spear

Shoester by Doug

slipping through my fingers

Sunshine and Moonlight — A Journey with Multiple Sclerosis

Surviving Multiple Sclerosis by Robin


The Barber Three by Iainaks

The Intelligent Person’s Guide to Beating MS by Rebecca

The Lemon~Aid Stand by Erin

The Life & Times Of Sancho Knotwise

The Life of BMW by Brian

The Multiple Sclerosis Companion by Pat

The Secret of My MS

The Zen Pretzel Trick

These Pretzels Are Making Me Thirsty

Tippy Topple

‘Tis Herself by Kell

Travels with Lucy

Tysabri — for those with MS it’s the best option by Deej

Vicki’s Blog

Victoria Mary Plum

viva la vida by Fatty Boombah


When it is raining cats and dogs!!!

White Lightning Axiom: Redux

Word Salads,the Demyelination of Me and the Breakdown of a Marriage

» WTF « by Chris

YodaMamma MS & More

It looks like I have a lot more reading to do!

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