Life with MS & EDS

January 30, 2009

The Ball is Rolling

Filed under: Uncategorized — by mseds @ 7:47 pm
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Well, I finally scheduled my first shipment of Copaxone.  The delay was because my neurologist had already sent a prescription with the initial fax over to the Copaxone folks at Shared Solutions, but my mail-order pharmacy wanted a different Rx.  There seemed to be a miscommunication about this with the doctor’s office and it took some calling around to get things moving.  Both the Shared Solutions folks and the pharmacy were very helpful.  There must have been a note or something in my file about this because when the pharmacy called this afternoon and I said “finally”, they responded as if they knew exactly why I said that.

So, the drugs should arrive on Tuesday.  They are sending a 90 day supply, which is going to cost me $30 more than I expected (I should have read about the co-pay increase for 2009, but didn’t.)  They are also throwing in a sharps container and alcohol wipes free of charge (how generous.)

After we talked about the logistics, they asked if I wanted to talk with a Pharmacist.  I wasn’t even sure what I’d ask this person, but I did want to make sure they were shipping the 29 gauge needle (they will), so I said I’d like to talk with them.  A really nice guy greeted me and made me feel very comfortable.  It was nice to talk with someone who wasn’t from Shared Solutions.  It made me feel like I was getting a more objective opinion.  He spoke highly of the medication and gave me some good tips and useful information:

Don’t ever shake the medication.

Store it where you would milk or eggs in the fridge.  Make sure it’s not towards the bottom or where it could freeze.

The medication can be kept out up to 86 degrees for 30 days, but it should be kept in the fridge.  Leaving some out while traveling would be okay though.

Doing it before bed seems like a preferred time of day.

Take the medication out at least 30 – 60 min. before doing the injection, but a few days worth can be left out at a time.  I think I’ll take one out the night before and that way I’ll always have one at room temp.

About 1 in 10 experience shortness of breath or rapid heartbeat at least once while taking Copaxone.  If this happens, sit down and breathe normally for 10 minutes.  Don’t panic (I’m sure I’ll panic, but will try to keep this in mind.)

To inject into the arm, place the arm over the back of a chair.  The AutoJect will make injecting into the arm easier, too. (He made sure I already had one.)

And lastly, what seems to be the most useful tip, don’t use ice on the injection site.  Instead, use a warm compress for a few minutes to warm the area before doing the injection.  This seems to minimize injection site reactions.  That made complete sense.  Freezing the area makes the blood flow slow, which keeps the medication in one spot longer.  Warming the area allows the blood to flow faster and therefore carries the medication away more quickly (although I suspect this could increase bleeding at the injection site, but I have zero medical training, so this is just a guess.)  I’m curious what the nurse will say about this during training.

After talking with the pharmacy, I called Shared Solutions again to let them know things were finally moving forward.  I asked for a few more supplies (fridge containers with locks since I have young kids, travel cases, an extra AutoJect – if I am forgetting something, please let me know!), but they said they can’t send anything until I’ve actually started the medication.  They did call the nurse who will train me and left a message for her to call me.

If anyone has any other Copaxone tips they have picked up, please let me know.  I’ll be shooting up with you soon and would love any advice!

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January 23, 2009

Someday a pill will come

Filed under: Uncategorized — by mseds @ 3:44 pm

There’s promising news on the horizon that there will someday (hopefully someday soon) be a pill for treating Multiple Sclerosis.  Merck release a statement that they are a step closer to releasing oral medication to treat MS called cladribine.  They conducted a promising study in Europe which showed a 60 percent reduction in relapses.  While data is not yet available on the effectiveness of cladribine in slowing the progression of MS, they anticipate data will be available soon.

Although this doesn’t change anything at the moment and there’s a good chance this medication won’t be the next greatest thing in MS treatment, it gives me hope that I’ll someday have an alternative to shots (should I ever get to start taking those in the first place!)

January 22, 2009

Slow Process

Filed under: Uncategorized — by mseds @ 3:31 pm

It feels like I’ve been waiting forever to get started on Copaxone.  I saw my neurologist on Jan. 7th and that’s when the ball started rolling, but it must be headed up hill.  He faxed over forms and the prescription to the SharedSolutions folks.  I called to follow up with them to ensure they arrived.  I had a nice conversation with them and they have sent several things in the mail to me since.  One package was the AutoJect2.  Another was a DVD and information on how to talk with children about MS.  Another was just an intro to ShareSolutions.  The latest was just more information on the drug.  The nurse even called to say hi.

What I’ve yet to receive is the drug!  I’ve called every 5 days or so just to follow up on how things are going.  Today I learned that they got approval from my healthcare company to cover Copaxone for one year.  That got things moving with the mail order pharmacy.  The Shared Solutions rep said it could be another 3 – 5 days before I hear from the pharmacy, but she offered to check with them regarding the status.  I’m glad she did, because they told her they are waiting on a new prescription from the neurologist, even though he sent one with the initial set of forms.  My goodness!

So, I’ll be calling the neurologist shortly to see if the office has already sent over the new script.  My “to wait or not to wait”  decision is being made for me!  It’s difficult to get all psyched up for something and then have this long delay.  I know it’s only been a couple of weeks, but it seems MUCH longer.

In the end I’ll probably be thankful for these few extra shot-free weeks, but right now I’m feeling kind of inpatient.

January 20, 2009

Jan 20th is Finally Here

Filed under: Uncategorized — by mseds @ 7:52 am
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I’ve always been interested in history and am particularly excited about being able to participate in events and moments in time that I know will be remembered for years to come.  Today is one of those days.  Our country will inaugurate Barack Hussein Obama as president today.  I think this is a giant step forward for our nation.  I’ve always heard the United States of America described as a “melting pot”, but that is never what I saw.  What I saw looked more like stir fry – take a bunch of ingredients and throw them together into a skillet.  The various components generally work great together and produce a sum greater than its parts.  However, what I see in President Obama is that infamous melting pot.  I’m proud of our country and how far we’ve come.  While there’s still much further to go, I have hope.  I have hope that President Obama will make the changes we need.  Selfishly, I especially hope that President Obama will make changes in our nation’s health care that will benefit us all.

January 16, 2009

Music to the Rescue

Filed under: Uncategorized — by mseds @ 2:07 pm
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The past couple of months I’ve been almost constantly tired.  I generally get 7 – 8 hours of sleep every night (usually closer to 8).  That seems reasonable.  I can’t figure out a way to get to bed much sooner than 10:15 each night and I get up every morning at 6:20.  I try to sleep in on weekends, but it doesn’t work.  I’m up by 7:00 anyway.  The slightest noise wakes me up.

It occurred to me yesterday that I’ve been eating during the day to stay awake.  Not good.  Coffee isn’t an option for me.  One small cup of regular coffee sends my low blood pressure up at least 30 points (I have proof thanks to a Starbucks screw-up between doctor’s visits.)  Apparently this isn’t uncommon with EDS and the cardiologist said to avoid caffeine.  Thankfully he okayed my decaf coffee addiction.

Anyway, I’ve probably put on about 10 pounds in the past 4 months.  The weight gain has to stop because it’s probably only making me more tired.  So, today I’m trying something new – listening to music.  Our iPod needed to be restored and is currently empty, so I found our stash of CDs.  Thank you REM, Barenaked Ladies, John Mayer, Indigo Girls, and Simon and Garfunkel for getting me through the day without constantly eating.  It’s mid-afternoon and I’m still tired, but this seems to be working.  I’ve not had a snack yet today.

January 14, 2009

Delaying Kindergarten

This morning we met with a nice group of people at our school district to hear about the transition from early intervention to kindergarten process.  There was the supervisor of special education, a school psychologist, someone from the Intermediate Unit (that’s where early intervention is coordinated here) and someone else.

For the past couple of years we’ve been on the fence about when Little Sister would start.  This past summer we were about 90% sure that she would stay in pre-school one extra year.  Then we received the “based on your child’s birthday, she is eligible to start kindergarten in Sept. 2009” letter.  There was an option for a transition meeting.  We decided to set one up so that we could talk with the school district and ensure we knew all of our options.

Our options were:

1. Sign her up for kindergarten for the 2009 – 2010 school year and have her evaluated to determine what services she may receive.

2. Have her stay in pre-school and receive the same services she does currently (which are physical therapy and occupational therapy, once a week each) and start kindergarten during the 2010-2011 school year.

We did learn that if we sent her to private kindergarten she would not receive the same services.  They offer very limited services to these children and PT and OT are not on the list.  So, Little Sister would have to remain in a pre-school setting.  That was okay.  We’re happy with her pre-school.  Until recently, we thought we’d do what we did with Big Sister who went to private kindergarten for a year and then started public kindergarten.  We did that for a number of reasons and it worked very well for her.  But, this isn’t an option for Little Sister and we’re okay with that.  It’s more important that she gets an extra year of PT and OT than it is for her to be more ready to learn how to read.

After they explained our choices, they asked about Little Sister’s strengths and weaknesses.  I am not sure we gave them everything we could have if I had thought this one through before hand, like I do before IEP (Individualized Education Plan) meetings.  I think we gave a pretty accurate portrayal of what she can and cannot do.  Her hypotonia (which is caused by Ehlers-Danlos Syndrome, hypermobility type) affects her in a number of areas.  While she’s on track cognitively (she knows her letters, numbers, asks great questions, was quizzing me last night at dinner about what starts with the “ch” “t” etc. sounds, and so on), there are many gross and fine motor things that she just cannot do.  She’s 4 and a half years old and not potty trained (still in pull-ups, rarely uses the potty).  That’s certainly our biggest problem right now (I cannot imagine her going off to kindergarten without being potty trained!)  She cannot sit still (moves constantly to keep her balance.)  She doesn’t have a lot of endurance (tires very easily and her skills rapidly decline.)  She’s just starting to alternate feet when climbing stairs and forget going down a full flight of stairs without hesitation, holding hands, or going down on her bottom (thankfully we have a split-level house with short flights of stairs.)  Her fine motor isn’t great (she switches from right to left back to right again when her hands get tired; she’s just now learning to draw basic shapes, but little else; she’s working on pre-writing skills using Handwriting Without Tears, which is actually going pretty well!)

They asked what kind of therapy she gets now and how often.  We said that she was just discharged from private OT since we were supposed to be doing aquatic therapy there, but they lost access to the warm-water pool.  They did ask if she has MAFOs and we said that she wears DAFOs (Dynamic Ankle-Foot Orthotics) and that she’s switching to Sure Steps (should allow her to have more movement in her toes.)  They also asked about social interactions.  She’s not a budding socialite, but she does okay with friends.  We also talked about her developmental milestones (walked at 26 months, etc.) and the medical testing she’s had (brain and spine MRI, EEG, genetic testing, etc.) and we talked about her Ehlers- Danlos diagnosis.  I’m sure they asked some other things, too, but I’m drawing a blank.

They explained how kids qualify for services.  There are 13 areas (they didn’t list them, so I’ll have to look them up.)  They did say that since she doesn’t qualify for speech (that was dropped last summer when her speaking really improved), that she’ll have to qualify based on her medical condition.  Thankfully medical is one of the areas.

They asked if we wanted to proceed with the evaluation process.  We could always change our minds and hold her back a year at any time (preferably by the kindergarten registration cut off of May 15th so they would have adequate time to do any evaluations.)  If we went forward, they’d meet with her teachers and/or therapists for input, watch Little Sister in her classroom, do evaluations, review existing paperwork, etc.  At this point we told them that we think it’s best for Little Sister if we wait a year.  I couldn’t tell based on our conversation if they thought she’d qualify for services or how many she’d be able to get, but I did get the feeling that they thought we were making a good decision by deciding to delay kindergarten a year.

While I’d love to know what the evaluators would think of Little Sister, I really don’t want to waste anyone’s time.  My curiosity can wait a year.  It seems that Little Sister will certainly benefit from waiting a year.

January 10, 2009

First Quality of Life Issue

Filed under: Uncategorized — by mseds @ 7:22 pm
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It occurred to me this morning that there is something I’ve stopped doing because of MS. For years I straightened my loose curls every time I washed my hair. About 3 years ago I stopped straightening it all of the time and over the next year did it less and less. Now I rarely straighten it at all. I love my hair when it’s straight! It looks so much nicer. I miss the straight hair I had as a child (hormones are evil – my hair went curly when I was a teenager.)

Every now and again I’ll still try to straighten it. This morning was one of those times. I was part way through when I regretted my decision. Because of the heat from the dryer, my optic neuritis was aggravated which made my eyesight worse. My hands also aren’t as strong as they used to be and I tire more quickly. Straightening hair, especially like mine, doesn’t seem like it should be too difficult, but it was.

It was definitely strange to realize this and to admit it. Now that I know I have MS I realize why straightening my hair the past couple of years has been more of a challenge than it should be. Thankfully this isn’t something major, but there are times when we have someplace to go and it would just be nicer to have my hair straight. It’s a bit of a sacrifice that the choice between curly and straight isn’t as simple as it used to be. I probably sound petty. There are certainly much worse things in the world than not being able to style your hair, but other than the optic neuritis and being tired, I really don’t feel like there’s anything wrong with me. This was a bit of a slap in the face.

My girls, especially Little Sister, love when my hair is straight because then I look like them. I usually just tell them that I don’t have the time to straighten it, but wouldn’t admit to them that it’s just too much effort. Hopefully this will be the only quality of life (although minor) change for a long time.

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