Life with MS & EDS

March 30, 2010

Mirena Replacement

Filed under: Uncategorized — by mseds @ 3:53 pm
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Yesterday I had my Mirena IUD replaced.  It was about 4 months shy of the 5 year life of a Mirena, but I wasn’t taking any chances on averages and my GYN agreed to swap it a bit early.  Surprisingly Blue Cross/Shield didn’t fight us on it (yet they refused to cover a hand cream Rx for Little Sister and expected me to pay $97, but that’s another story.)

Removing the old Mirena was really easy.  One pull of the cord and it was in the GYN’s hand.  I thought it was going to be more painful, so that was a nice surprise.  What I had forgotten was how much insertion of a new Mirena hurts.  My first one was not too long after Little Sister was born, so I still remembered the pain of natural childbirth (the natural part wasn’t by choice.)  I guess at the time that was a good reference point to put this into perspective and I didn’t care as much.  But now, almost 6 years have passed since Little Sister’s birth and amnesia about the experience set in long ago.

One step of inserting a Mirena involves measuring the uterus so the doctor knows how wide to set the IUD.  This involves putting something to hold the cervix open so they can get an accurate measurement.  That’s the part that REALLY hurt.  The GYN apologized and gave up, setting the thing for normal.  Works for me!  At least I hope that was a good thing.

While she was trying to do this she mentioned to her nurse (she was in there to hand things to the doctor) that the Mirena kit now costs more and they no longer include everything the doctor needs to insert the IUD.  It was either the thing that holds the cervix open or the measuring device or both, I was too busy saying “ouch” and think I missed a word.  It was interesting to hear the doctor ponder what to do about that cost to the practice since there isn’t a way for them to recover that expense.  Just another minor example of the games played in the health care industry.

After she gave up on measuring, which was actually a quick decisions, she popped the Mirena in, at which point I had cramps.  The doctor and the nurse were really nice the whole time.  They encouraged me to lay down for a bit and came back in about 5 min. to check on me.  She commented that I looked red and should probably rest a little longer.  Laying on my back was making me cough (that’s another story, too), so the nurse elevated the exam table so that I could recline instead.  I rested for another few minutes and then felt well enough to head home.  If only it were quieter I would have loved a mid-day nap, but that wasn’t the case and the faster I could get home, the faster I could get some Aleve!

The cramping passed in just a couple of hours and I feel fine now.  I’m glad to have peace of mind that the chances of me getting pregnant over the next 5 years are less than 0.01%.  In spring of 2015 I’ll be 41 and we can decide what makes sense then.  At worst, I’ll have to do this one more time.  For the assurance of not getting pregnant again, this is worth it.

I’ve never been one with a strong motherly instinct.  Don’t get me wrong, I love being a mom and have always wanted kids.  But being an only child and having always wanted a sibling is the only reason we had more than one child.  My husband and I have a rule of “one big body to one little body.”  Our current balance is perfect.  I don’t even get that “urge” that others seem to get when they see babies.  I’m not even one who likes to hold babies.  I’m most likely to ask a new mom if she wants me to hold her baby so that she can have some time empty-handed to do other things.  As long as I’m seated with something under my arm to support the baby, all is good (Note: don’t hand me your baby for more than 5 minutes if I’m standing and you don’t want to risk me dropping the little one!)

So, we’re certainly DONE having kids.  Between rough pregnancies (7+ months of hyperemesis) and rapid deliveries (thanks, Ehlers-Danlos!), not to mention the fear of going off of MS medications for about a year are plenty of reasons in addition to our nice ratio to know that we’re done having kids.  Yet, something about me would much rather have a removable IUD than to have something permanent done to my body or my husband’s.  I’m still not sure why that is.

March 22, 2010

Health Care Reform Bill Passes

While I don’t think the health care reform bill goes quite far enough or accomplishes as much as it should, I am very thankful for its passage.  As a parent of a child with a diagnosed life-long disease, I no longer have to worry that she won’t get medical coverage or that we made any wrong decisions while trying to figure out what was wrong with her.

We first knew something was wrong with Little Sister when she was 9 months old.  She wasn’t rolling, wouldn’t lay on her stomach, and couldn’t sit up, among other things.  We started with physical and occupational therapy and began down the path to determine what was causing her delay.  We went to a pediatric neurologist.  We ruled out Cerebral Palsy and Spina Bifida with an MRI when she was one year old, but ruling things out didn’t bring us closer to knowing what was wrong.

We moved around the time she was two.  The old neuro told us to ask the new doctor for genetic testing.  Great, sounds simple enough, right?  Take some blood and know if one of hundreds of things were wrong.  It’s not so great actually.  As parents we wanted to know what was wrong with her, but knew that the answer could prevent her from ever getting health care coverage or life insurance in the future.  Thankfully, as a government employee, I knew we would not get dropped immediately, but what if I ever lost my job and needed to qualify for other health insurance?  It was a difficult decision.

We decided that knowing what was wrong outweighed the potential risk, so we went forward with the karyotype.  It turns out that the test didn’t show anything wrong.  We were offered the opportunity to do more extensive genetics testing, but decided against it.  Part of me didn’t want to know if she was susceptible to specific diseases or illnesses, but a bigger fear came down to future medical and life insurance considerations.  Not only did I not want to know if she had a gene that could lead to something down the line that we hadn’t even considered, I didn’t want anyone else to ever use that information against her.

One of the last conversations I had with our friend before she died from breast cancer was about genetic testing.  She was dying from a rare and aggressive form of genetic breast cancer.  She had two little girls.  She talked about not wanting them to have the test to determine if they had that potentially deadly gene.  We talked about fear of our girls not having health care coverage when they needed it most.  Trust me, it’s a really hard decision to make.  Knowing that you have something that could potentially be treated before it can do damage meant that insurance companies would also know and decide you were too much of a risk to take on.

With this health care reform legislation, I no longer have to worry about Little Sister obtaining medical insurance.  It’s okay that her medical records indicate she has Ehlers-Danlos Syndrome.  EDS is a very treatable disease and generally not life-threatening, but it’s still a pre-existing condition.  We need to monitor her heart, getting electrocardiograms every 3 years and yearly during puberty.  We have expenses for DAFOs (ankle-foot orthotics.)  We had expenses for therapy, but now the school system provides it (this could change.)  In general, it’s not an expensive disease.  I cannot imagine what parents of kids with costly and life-threatening diseases go through.

Compared with EDS, my MS is a very expensive disease.  Between brain and spine MRIs every 6 months (these will eventually be further apart), disease modifying drugs, and three neurology visits a year (sometimes more), I cost insurance companies quite a bit of money.  I hope that our Senators, Congressmen, and President continue to press of even more improvements to health care.  No adult should be penalized for pre-existing conditions and risk losing their insurance when they need it most.  Everyone deserves access to high-quality medical care, without it bankrupting them.

March 19, 2010

Sesame Place Challenge 2010

Filed under: Uncategorized — by mseds @ 9:14 am
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The Variety Club is doing the annual Sesame Place Challenge on April 25, 2010.  If you have a child with a disability, this is a fantastic event!  We go every year and really appreciate it.  I hope the weather is as nice as last year and that I won’t be on steroid treatment this time.

I just registered us for this year.  Sadly, my favorite part of the process is that “Ehlers-Danlos Syndrome” is actually on their drop-down list!  I don’t have to check “other” and then say what her problem is.

Thanks Variety Club and Sesame Place!

March 9, 2010

Update on BNAC’s CCSVI Testing

Filed under: Uncategorized — by mseds @ 10:43 am
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I just received a letter from BNAC regarding my application for CCSVI testing:

Thank you for your request to be seen by our office for evaluation of CCSVI.  We are writing to inform you that we are currently waiting for Institutional Review Board approval to begin our “Liberation Study” with The Vascular Group PLLC.  Once we obtain that approval, we plan to move forward with scheduling patients.  At this time we are unable to provide you with any additional information.

We understand that many patients are traveling from long distances, and we will do our best to make arrangements so as to accommodate your travel requirements.

When our approval is in place, we will provide additional information.  We look forward to having you as a patient, and are dedicated to raising awareness and understanding about Chronic Cerebrospinal Venous Insufficiency, or CCSVI.  Please feel free to contact our office any time with questions or concerns.

March 8, 2010

How to Spa with MS and EDS

Last week I was on a fantastic business trip in AZ.  Since I telework, it’s great to get to see my team, but it’s even nicer in a beautiful surrounding.  The resort and the views were amazing!

While I was there, I treated myself to a spa appointment.  Their list of services was so fantastic that it took me about 3 weeks to decide what to do.  I couldn’t fit in more than an hour, so that limited things.  I also knew I couldn’t take advantage of their hot tub or steam room, not without risking an MS flare-up (heat like that messes up my optic neuritis.)  I used to love to have facials, but rosacea has made those tricky and I wasn’t up for chancing it while on a business trip.  That narrowed the list down to massages and wraps.

I decided on a hot stone massage.  In general, it was quite nice.  I tend to get cold easily, so the hot stones were nice.  There’s something comforting about laying on a row of warm stones and having more piled on top of you.

At the start of the treatment I told the lady that I had MS, but didn’t mention the EDS.  I usually don’t unless someone really needs to know because it takes too long to explain.  Given that my symptoms are pretty low, other than the heat with MS, I hadn’t really thought of how a spa appointment would affect either the MS or the EDS.  I soon figured it out.  The problem was with the use of the stones during the massage.  My left shoulder blade area is bruised.  I guess anything even slightly deep tissue is a bad idea!!!

Lesson learned.  I think I’ll try a wrap next time instead.

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