All Journal Entries Journals

Bits and pieces

Sep 04, 2010 - 0 comments

  Ahhhh, went to bed too late and alarm came too early.  Up at 5:15am to make muffins for vball and make sure kids up and getting ready.  Kids not up even after I flipped their lights on and had made it half way through muffin making.  We were all beat. They stayed up too late for high school football and dh and I did too just wrapping the day up.  

  By the time I made it to the tournament site with the lunch and snacks at 9 am, they had already played their first match and were warming up for the second.  Dh and I had tagged teamed it getting the food to school just in case the coach wanted them to eat earlier rather than later. Good thing cause by 10 am they were done with pool play and heading to another site to play in the gold bracket. The coach wanted them to eat on the bus there.  Once the handoff was made, our job was complete. Sweet.

  Don't get me wrong, I enjoy participating in a support role in lots of activities. It may seem tiresome and not worth the effort to some but really the kids (mine and the ones who get the support) really do appreciate it.  Making a difference in a small way is huge to the person you are impacting.  Yet sometimes I am glad when I have completed my support role and just moved into parent watching mode.  Besides with everything happening in our household recently we are all a bit cranky, sleep deprived and hungry.  There is just too much going on at the moment so anytime we get a break, it's sweet.

  Suffice to say it's been another long day and it's not even half way over. I headed home before they finished the tournament to eat lunch and let the dogs out.  Actually the pool is looking might good now and then I think a nap will be in order.  Can't decide which site I will inject tonight.  Do I want Saturday to be my other arm or should I try a hip?   Humm.  Wonder if it will feel the same as last night.  The injection site on left arm really is next to nothing.  The nurse said the key is chosing the depth of the needle each time depending on the site you are injecting. Too deep and you will be very sore, too shallow and you will get a welt.  Maybe I will just do my other arm since I already know the depth there. She gave us suggestions for each site but you just never know.  Dh and I discussed how best to handle if he is on a business trip.  Not sure I want kids to be responsible should I go into a panic attack.  He feels they could handle it.  Fortunately he doesn't have business trip planned for near future so we can put off thinking about that for the moment.

  Ellen the nurse said copaxone doesn't have any known drug interactions.  This means that should I need to take anything I don't need to worry about it effecting or being effected by copaxone.  She seemed surprised that I had made it to 48 yrs with absolutely no daily drugs of any kind.  My cholesterol is in the mid 140's and my LDL/HDL risk ratio is 1.9.  Not bad.  Still my medical file isn't really a binder but a large plastic box.  Everything that ever happened to me medically in the past had a beginning and an end. This doesn't. Now, I am collecting massive amounts of paperwork from the drug companies, the dr's office and SS by the minute. Half the stuff I am not reading.  I am only looking at what I have to then moving on to the next thing.  Dh did ask Ellen how to dispose of all the needles. She suggested we call the health department. They could pick or we could drop off for a small fee.  It's a whole new world.

  Random thoughts- I am really digging the Zac Brown band. Don't know a thing about them other than they look pretty raggy and I LOVE their music.  Everytime I hear one of their songs I just gotta have it. Also, had a wonderfully sweet juicy orange today. Yum.  And I heard an old song that I use to love back in the day called "Love is the Answer" by England Dan and John Ford Coley. Wow, great mentally floating back in time while I drove with the windows down.

  My physical sx seem to be ever so slightly still there but not all the time.  Faint numbness or sensations in my right foot and arm sometimes. It tends to turn up in volume when there is a stressful event going on.  I am getting better and recognizing it and settling myself down.  Sure hope that in time it will just go away and won't return unless or until I have a "relapse" (I am shooting for at least 10 yrs out). Sometimes there is a slight sense that my internal body (the very center of me so I guess that would be my spine) is humming.  I don't mean like humming a song but like humming like it's turned on.  Apparently this is very, very common with MS.  The doctors haven't been able to explain why it happens or what it is even from.  I am hoping this goes away.  It is alittle odd and I don't want to get use to it.  All in all when I think about it having no physical impairment after having MS for close to 20 yrs it's wonderful. There are people who get the "bad" kind that comes and never leaves. And there are people who get the milder form but move into a progressive slide after each relapse.  I am shooting for not only no impairment but no nothing after 20 yrs and moving forward to the next decade. Time will tell as it always does.  But things have a way of working out or they just haven't finished working themselves out.

  The l'hermittes sign continues to diminish.  I did catch myself looking down at my shirt to see if I spilled something on it earlier today and there was no obvious odd sensation.  Yippeee.  But I am not changing my course though.  I can bend down, I can get on my knees,  I just can't actually bend my head downward in a tilt. I have to keep my head over my shoulders and my chin up.   No one has said anything to me so I guess I don't look that funny.

Sleeping positions seem to be less thought about and more natural now.  In the last couple of months especially it's been hard finding a comfortable position for the numb side, the neck or the back. Now I don't have to think about it as much as the challenges seem to be diminshed to the point where there just isn't a lot of thought about it.

After a swim and a walk with the dh and dogs, it's back home for dinner prep.  I am reminded of my next shot each time I pass the dining room that has all the stuff Ellen brought us last night.  Tonight's shot is going to be at 8:30pm.  I am moving back the shot time to about 9 pm but doing it slowly.  It is a 24 hour medication so it's only as effective as your last shot.  One 1 ml syringe is taken out of the laundry frig to warm to room temperature. It takes about 7 seconds for the entire syringe to dispense into the body.  Hum....not looking forward to doing it without the nurses help tonight. Take a quick shower to relax (not sure how effective it is) and am ready to go.

  Dh has the LSU football game on. The kids are zonked out.  It's been another too long day and it's not even 9pm yet.  Put the auto injector together and put syringe in.  Wipe part of my arm but as I am getting ready to inject realize that I might not have wiped entire area.  Do again and wait to dry.  Dh standing to my right as I am injecting my right upper arm.  Last night my tendency was to push too hard on the injector. Dh's job is to make sure I don't do that as well as make sure I am putting on skin at 90 degree angle.  Okay, we fiddle several times making sure we both are happy with placement.  Gently push the two pieces of the injector together and press button in.  Wait to hear and see that all med goes in.  We pull it out and it looks to be a success!  Small amount of blood that I press with a cotton ball, briefly ice and move it around.  Feels similar to last night. Hot and sore for a few minutes then it calms.  Feels a little less intense than last night actually.  Ahhh, what a relief.  This will get easier as I get more experienced. For now, I am glad it's over and am heading to bed.  Today has been a bit disjointed and was a challenge at times to get through.  It seemed to come in bit and pieces and I am ready for it to be over. Off to bed I go.


Post a Comment