Oh Injections

I do the Rebif injections three times a week.  I am fortunate I guess that I don’t have to do them everyday but it would still be nice to take a pill instead.  Just today it was announced that the first oral (pill form) disease modifying drug will be available in coming weeks.  You can read the article here.  I’m not one to jump on any form of new treatment so I would like other people to test this drug for me for a few years so I may feel safe taking it one day.  That other new magical treatment sounds great too but I’d like to see that successful for a few years before I go under the knife.  People have died from this radical new treatment (and no one has ever died from MS).

My injections go something like this:

Step 1:  Alcohol swab the area to inject.  I can choose legs, stomach, butt or arms.

I was told to rotate and never do the same site twice within two weeks.  I was also told that I could skip one area so I NEVER do my arms.  I tried once and it was horrid.  My stomach is the easiest and least painful and Hubby helps me do my butt shots.  When I inject my legs they twitch like mad.  After a month or so on Rebif my Neurologist told me that I can actually do my stomach like 30 time in a row just not in the exact same place.  Needless to say I do my stomach like 30 times before I rotate to my butt or legs.

Step 2: Load the Rebiject.  I use the auto injector.  It causes some extra bruising but I like it better than holding the syringe and poking myself.  It stings a little bit and I sometimes twitch when I inject my butt but it could be worse.

Step 3: remove Rebiject and press cotton ball on injection site and wiggle around for a couple minutes to spread the medicine.  Lately this part hurts like hell and I don’t know why.  It hurts worse than the injection.  As soon as I press the cotton ball onto the injection site it shoots a weird pain deep down below the skin.

Step 4: Remove syringe from Rebiject and clip with BD Syringe clipper.  The nurse who came over and taught me how to use my Rebif told me about this little gadget.  Once you clip the syringe it is no longer Biohazard and can go directly into the trash.  She also said that this clipper should last me about nine years before it’s full.

Side effects? Not really.  If I’m dehydrated I can get a pretty nasty headache but if I chug water it goes away within an hour or so.  I do my injections on Monday-Wednesday-Friday right before bed.  Since there is a bit longer stretch between injections from Friday to Monday, I quite often get a headache on Tuesdays.  Annoying.  Once I forgot my Friday syringe when we went out of town and boy was I wreck after my following Monday shot when we got home.  I try not to plan too much on Tuesdays just in case I get my “Tuesday Headache”.  One thing about staying hydrated to avoid the headache is my bladder control issues.  Headache or pee my pants?  Living with MS is all about learning my limitations and making decisions to make myself more comfortable.

I’m still learning how to adapt and adjust and I’m still irritated by my limitations.  I find myself avoiding situations so that I won’t feel embarrassed (like playing catch with Hubby) or have to explain things to people.  Since I look normal, people don’t quite understand why I need special accommodations.  I want to print this out for everyone in my life.  Even my Hubby, the closest person to me and who knows me better than I know myself, doesn’t totally understand and forgets about my limitations.  I try to explain things to people but I have found that it doesn’t always help.  I mostly tell people that if I over do it or get stressed out that my legs don’t work.  That seems to have an impact but they see me walking fine because I’m stubborn and proud and don’t want people to see how bad my legs really are.  My Cog Fog can be played off like I’m ditzy (which I never have been) or that my hearing is bad.  My urgency to pee can be played off as I had too much coffee.  My shakey legs can be blamed on my legs fell asleep when I stand up to walk.  When I stop pretending and tell people what is really going they either don’t hear it or get uncomfortable about details.  For now, I’m so grateful that I am unemployed so that I can figure this stuff out in the comfort of my own home.  I’m almost wishing that I don’t get the job that I interviewed for this week but I want to help contribute to this household financially……I’m getting quite used to being between a rock and a hard place.