Life with MS & EDS

July 21, 2009

Reality

The past several weeks have been pretty decent.  I finally felt the positive effects of the lovely Solu-Medrol steroid experience.  Still being awake at 11 p.m. as opposed to exhausted by 8 p.m., not having any numbness in my left arm, and having still lips was worth it.  Never thought I’d say that!  Lack of exhaustion was certainly the best part of things.

Life has been keeping me pretty busy and certainly quite occupied.  The girls are having a great summer and we’re getting down the shore pretty often.  As a full-time teleworker, I’m fortunate that I rarely ever have to travel.  However, the past 4 weeks brought 2 unexpected trips.  One was for training in Baltimore and last week I ended up in Chicago for a great meeting (yes, surprisingly those do exist.)  It was my first time flying with Copaxone.  I put everything into that blue plastic travel case, shoved it into my laptop backpack and off I went.   At the security check-point, I unloaded the blue box along with my laptop, BlackBerry, iPod, and shoes (thanks a lot, shoe bomber, for making me have to stand where thousands of other people have stood without their shoes on – yuck) and through the metal detector I went.  As I was walking through, the TSA guard asked what was in the box and I said it was my medication.  He said I didn’t have to put that through separately.  Nice to know, but it just seems safer to pull it out than to have them wonder what these pre-filled needles are on the x-ray monitor.   I took it out on the return trip, too, although those people didn’t say anything.

Later this month we’re taking a family trip to Disney and I cannot wait!  I’m concerned about the heat as well as how much walking Little Sister will be able to do.  To test things out, we didn’t take the stroller on the boardwalk this past weekend.  She made it about a mile before she started complaining.  My husband, complete with a very  sun-burned back, had to carry her home the last 3 blocks.  This was without her DAFOs and with little stopping.  I can’t imagine that we’ll have an uninterrupted mile+ long walk while in Disney, so I think we’ll be okay.  I’ve built in break time and will arrange for shows, longer rides, etc. to split things up.

Planning these trips has been a nice diversion.  I’m also hosting a birthday party for my best friend 2 days after we return from Disney.  Having things to plan is a great way to occupy time.

Yesterday also brought great news!  When we moved here a few years ago, my work was stable, but my husband has been dependent on contracts, which have been slow coming the past 2 years.  After a bit of a drought, he got a great contract about 2 months ago.  It was fantastic to know that things would be steady for the next 6 months.  Never in a million years did we expect he’d get a call last night with an offer for a full-time job!  It’s also full-time telework with minimal travel!  We are so fortunate.

So, as you can see, things have been going pretty well.  Aside from that strange instance of vertigo and my eyesight not improving, health-wise things have been unremarkable.  I’ve been a bit more tired lately, but I’ve also been very busy.  I’d like to blame it on that and not the effects of the steroids going away.  I don’t want to do those again anytime soon.  Even my hip, which was giving me a lot of pain when walking long distances, has been great!  Walks on the boardwalk used to do me in, too, but I think the monthly chiropractor appointments are really helping.  It’s strange how being in alignment makes such a difference.

Reality has sunk in that I have MS and that’s just the way things are.  This was my primary focus for so many months.  It’s nice to have these other things to concentrate on now.  I suppose I’ve reached the “acceptance” phase.  Reality did creep up on me last night though when I was doing online check-in for the Breast Cancer 3-Day.  Phase One includes a medical questionnaire.  For the first time I had to check off “other” and put in not only Ehlers-Danlos (which was new last year), but also “Relapsing Remitting Multiple Sclerosis.”  Honestly, I don’t think I’ve ever written that out before.  Heck, I never even spell out MS anymore.  I found myself checking the spelling to make sure I had it correct before hitting submit!

May 18, 2009

Did Not Expect This

Filed under: Uncategorized — by mseds @ 4:13 pm
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Well, it looks like I’ll be seeing Dr. Specialist sooner than my October visit.  I called to talk with her nurse on Friday to ask about my latest symptoms.  My left arm from the elbow down is still getting pins-and-needles and that same sensation that was happening on my upper lip, left side, is now spreading across the lip and to the bottom lip.

The nurse returned my call on her drive home Friday night and said that she’d tell Dr. Specialist about the symptoms and that they’d look at my MRI results again on Monday morning.  I said that other than not feeling quite as fatigued, I’ve not noticed any improvement from the steroid treatment, which I finished on May 5th.  She said that it was probably still working in my body, which I thought was strange until my husband reminded me that antibiotics keep working well after you’ve swallowed the last pill, too.  Duh, that makes sense.

So, the nurse called back this afternoon and said that Dr. Specialist wants to see me and that they are fitting me in Wed. morning.  She didn’t elaborate and I didn’t ask, but I have a feeling Dr. Specialist wants to change my medication.  I’ve gotten used to Copaxone.  The shots don’t itch like they used to (except sometimes on the tummy.)  They still sting afterwards, but I’ve gotten kind of used to it and the ice does help.  I’m not sure what I think about switching, but if this drug isn’t working, then I suppose I need to try something else.  I’m not thrilled about changing to something that can cause liver damage.  My mom was just diagnosed with adult-onset Still’s Disease, which is an arthritis disease that causes liver problems, and several other family members have had liver disease, including my aunt.  This is going to be a big part of my conversation with Dr. Specialist on Wednesday.  In the meantime, I need to read up on the other drugs again.  I’m glad I wrote down what I thought of them back in December when I was doing my initial research.  It’s helpful to have something to look back on. I have a feeling she’s leaning towards Rebif based on my last conversation with her.

I’ll let you know what happens on Wednesday!

May 4, 2009

Prednisone – Day Twelve

Filed under: Uncategorized — by mseds @ 6:13 pm
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Finally, it’s my last day on Prednisone!  The end of this steroid treatment cycle has arrived!  Wahoo!  What a crazy two weeks this has been.  The past couple of days while on just 20mg have been pretty good.  I still have the metallic taste in my mouth, my senses are still heightened, I’m still wide awake at 11 p.m., I’m still overeating, and my reflux is still bad, although not as bad as it was.  My mood has returned to close to normal.  Unfortunately, my rosacea is also returning.  Oh well.  I knew clear skin was too good to last.

I’ve honestly not noticed any change in my symptoms after doing the steroids.  I actually developed a new symptom the middle of last week.  In addition to the tingling in my left arm that started last month, I now have a top lip that quivers, mainly left of center.  It’s not very noticeable and it comes and goes, but I can feel it and Hubby can see it if he looks very closely.  That’s two new symptoms in a matter of a month.  Hopefully this will slow down!

I’m not happy with the amount of weight I’ve gained in the past 6 months.  I think it’s about 20 lb., including the steroid-weight gain.  Tomorrow will be my first day off of the drugs, but it’s also Little Sister’s dental surgery.  So, starting Wednesday, Hubby and I are doing Weight Watchers again.  We shook on it tonight.  After Big Sister was born, I lost 50 lb. doing WW before Little Sister was born.  I’ve put all of that back on and more.  It’s time for it to go.  The MS Walk this weekend got me moving.  I need to keep that up.  I also need to stop eating like crap.  I’ll allow for emotional/stress eating tomorrow, but then we’re counting Points starting Wednesday.  Last time I had at-work meetings for support and accountability.  Since I telework and don’t have easy access to meetings, I’m going to go it alone, with just Hubby and friends who also count Points, and will try to use the blog to hold myself accountable.  We’ll see how it goes!

MS Walk 2009

Filed under: Uncategorized — by mseds @ 3:20 pm
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Six months ago I never expected that I would have spent this past weekend doing the MS Walk in Ocean City, NJ.  Six months ago I didn’t even know I had MS.  A lot has changed in the past half year.

The first time I heard of MS is when someone asked me to donate to the MS Walk.  I have cousins who do the walk every year and I’ve always donated to their efforts.  Earlier this year I thought about doing a walk, but at the time my girls didn’t know I had MS.  My girls know I’m a crew captain for the Breast Cancer 3-Day and that’s their only frame of reference for a “walk.”  I do that in memory of a friend who lost her life at the age of 35 after battling breast cancer for only nine months.  I still remember when she came to Big Sister’s birthday part in April 2007 and said she had just found a lump while nursing her baby.  From there it was a rapid slide from Stage 2 to Stage 4 breast cancer.  She passed away just before Christmas 2007.  I wasn’t sure how to tell my girls that Mommy has something people do walks for.  I had a difficult time getting past that since they know I do the 3-Day so that other girls won’t lose their mommies like our friend’s family lost theirs.  Even once we told the girls last month that I have MS, I still wasn’t sure how to tell them about the Walk.  I didn’t want them making any connections between the 3-Day and the MS Walk.  Yes, MS is important enough to walk for, but we’re not doing this because it can kill Mommy, because it won’t.

My last MRI is what motivated me to sign up for the MS Walk.  I felt helpless knowing that there are a ton of lesions on my spine.  That was quite a shock after thinking things were pretty good with only 3 spots on my brain.  Other than staying on my daily drug and doing the steroid treatment, there wasn’t anything I could do about it.  Then it occurred to me that there certainly is something I can do about it.  I can walk.  I can ask friends to walk with me.  I can ask friends and family to support me.  Together we can all do something about it.  We can raise money and awareness to fight this for me and the thousands of others like me.  It was empowering to take on this challenge.

Soon after I registered, four friends and someone I don’t even know (a friend of a friend) joined to walk with me.  I was so elated!  It all came together very quickly and in less than a month our team raised $1,000!  As important as raising the money and doing the 4 mile walk (which was a bit of a challenge for me) was the time I got to spend with these amazing ladies.  We’re very fortunate to have access to an old beach house, so we made an overnight of it.  We had great food and great conversation.  A get-away was just what I needed after Day Ten on Prednisone.  Many of the ladies are walking the 3-Day this year, so it was a nice training walk for them.  We even reminisced a bit about our friend who passed away.  She would have appreciated that we had a few laughs when thinking about her.

While it’s hard to fundraise for two important efforts, I decided that I’m going to give it my all and hopefully continue to make a difference for both.  From Mother’s Day through October, I’ll focus on the 3-Day.  Now from October through May, I’ll focus on the MS Walk.  Next year I hope to be able to do VIP Check-In.  We all deserve a world free of breast cancer and free of MS.  I hope I can do my part.

May 2, 2009

Prednisone – Day Ten

Filed under: Uncategorized — by mseds @ 9:07 pm
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I’m going to keep this very short.  Today was basically the same as yesterday, except I needed a morning nap.  It was a productive morning before the nap.  I called Disney at exactly 7 a.m. to get reservations for Little Sister to have lunch with Cinderella for her b-day later this summer.  It was as satisfying as snagging concert tickets!

We’re having a great girls’ weekend at the shore house.  This is just what I needed.  We got in a 1 mile trial walk today.  That’s all the prep I’ll have before the 4 miles tomorrow.  Hopefully it will go well.  At least I’ll have great company.

May 1, 2009

Prednisone – Day Nine

Filed under: Uncategorized — by mseds @ 8:14 pm
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Today was my first productive day in two weeks!  The birds woke me up around 5:30 despite the white noise of my fan.  I gave up on sleeping at 5:50 and have been going strong ever since.  I finally got some things done at work.  After that I packed away all of the clothing that doesn’t fit Little Sister.  Tonight I went through Big Sister’s stash of old clothing and found a ton of tops that will fit Little Sister.  Bottoms are in much shorter supply, but hey, that’s all the less money we need to spend.  I even found PJs and swimsuits!  So aside from terrible reflux, things are going well and that promise of steroid-driven energy seems to finally have come my way!

I called Dr. Specialist this morning about the reflux.  It was horrible last night.  My throat was on fire.  I got the okay to take 3 Zantac 150 a day instead of 2.  I always take one with the Prednisone in the morning.  I took an extra before dinner and I’ll take the last before bed.  I also bought a bottle of ultimate strength Mylanta to coat my throat.  Little sips every few hours seem to be helping.  Thank goodness!  Hopefully I won’t have to sleep upright like last night.

Today we also started getting ready for Little Sister’s dental surgery next week.  She needs to have at least 8 cavities filled.  Since she has hypotonia she has trouble sitting still (she is constantly moving) and they couldn’t get a clear x-ray at her last appointment, but it’s obvious that a lot of work is needed.  She’ll have x-rays taken again while under anesthesia on Tuesday and they’ll let us know the full extent of the work needed then.

I had a good conversation with the pre-admission nurse this afternoon.  I went through my basic blurb about Ehlers-Danlos Syndrome.  Things always take a bit longer to go through about Little Sister than the average almost 5 year old.  Most kids this age have not been in the hospital 6 times, under anesthesia 3 times, seen a bunch of doctors, have a diagnosed medical condition, etc.  Then we went through the basics like not being potty trained, fine motor challenges, oral-motor difficulties, and so on.  I was surprised by the number of questions they asked, but I’m glad they were pretty comprehensive.

The nurse was very nice and seemed to take down all of the things I said.  My main concern is that Little Sister has sensory issues that make her freak out a bit more than the average kid.  Getting her blood pressure taken is as scary for her as getting a shot.  I made sure to mention this and the nurse said they’d be willing to do it after she gets the “giggle juice.”  I just need to ask to talk to the anesthesiologist before the nurse does anything and ask that we change the order around a bit.  We may even try to get her changed into the hospital gown after the giggle juice.  She hates hospital gowns!  Now if only I can find a way to get them to agree to take the IV out before she wakes up.  That will be the biggest challenge.  If she sees the IV in there, she won’t use her arm for weeks.  She’s both stubborn and ambidextrous, so she can go quite a while using just one arm.

But, before Tuesday, I have a wonderful weekend planned to keep my mind off of everything.  I can’t wait to get to Ocean City, NJ tomorrow for our girls’ overnight before the MS Walk on Sunday.  It’s likely going to rain, which stinks, but I’m sure we’ll still have a great time.  I can’t wait for tomorrow!  For all of you who made donations, thank you so much!  We raised more than I ever expected.  For those of you also doing MS Walks this weekend, I hope you have a great time!

April 30, 2009

Prednisone – Day Eight

Filed under: Uncategorized — by mseds @ 7:39 pm
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Today was the first day I can honestly say I had any energy.  I made it through an entire day of work with no sick leave!  I actually think I was moderately productive.  I still don’t feel like myself.  My thoughts aren’t as clear as they should be and I still feel like there’s a wave of something over me.  I am edgy and my patience level hasn’t returned to normal.  Little Sister was screaming her head off this morning and I really felt the need to just get out of the house.  I couldn’t tolerate it.  Thankfully hubby got her on her way to school before I brought myself to depart.

My hunger level has reached a new high.  I didn’t think it was possible to want to eat this much in a day.  I’m trying to make healthy choices (e.g.,  oatmeal instead of eggs for a second breakfast; salad instead of junk-food in the afternoon; cereal instead of ice cream for bedtime snack), but it’s still three extra meals that I probably don’t need.  Of course this is only making the acid reflux worse and two Zantac 150s a day are not enough.  I need to get the eating under control and find out if there is other medication I can take or if I can take Zantac three times a day.  My throat is just burning and that makes me want to eat more to push down the acid.  It’s a vicious cycle.

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