Life with MS & EDS

May 20, 2009

Thank Goodness!

Filed under: Uncategorized — by mseds @ 8:08 pm
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Today went far better than expected!

Other than the long wait for the doctor, the visit to Dr. Specialist went very well.  I did the full battery of drunkard tests again and they spent more time checking my sensations (does this feel as cold or less cold than this, can you feel these vibrations, etc.)  Things didn’t feel quite as cold and the vibrations were not quite as strong on my left arm and hand, but I could feel everything and that was a good sign.  My lip is definitely getting pins and needles, but it’s not numb.

It occurred to me that my optic neuritis which comes back each October is usually gone by Memorial Day, but other than the pain going away, I’ve not seen any improvement in my vision.  I’m worried that it is here to stay this time.  At least I still have 20/20 vision in the bad eye.  I was able to read almost all of the bottom row of the eye chart with my bad eye if I squinted (I couldn’t tell if something was an 8 or a 0, so I just said it was something round) and the color red wasn’t quite as bright as it is looking at it with my good eye.   It looks like someone took a gray tint over it to make it dull.

This is obviously both good and bad news.  Yes, there are two new symptoms, but they aren’t bad and they could clear up in a month or maybe they won’t.  But, things are good enough right now to avoid steroids!!!  YEAH!!!!  It didn’t even occur to me that she may have wanted me back on them so quickly, so I’m thrilled that I don’t have to do that again.  Also, she didn’t bring up changing my medication as I had feared.  I imagine she’ll bring that up during the October visit if things don’t improve.

So far, so good!  If things don’t get better in the next month I’m supposed to call back.  I assume that will mean another round of steroids, but I’m trying not to think about that and am hoping things improve before then.  Also, if things get worse or anything new appears, she wants me to call back.  All in all, it was a pretty reassuring visit!

The best news of the day is that my husband has a new client!  YEAH!  He’s an independent consultant and work’s been crazy slow for a while now, so we’re very excited that this came his way.

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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 14, 2009

Copaxone Injection Sites – Updated

Filed under: Uncategorized — by mseds @ 3:05 pm
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After posting my injection site rotation, I kept fiddling around with it.  Too many sites were too close together.  I took the advice that you don’t want to use an injection site more than once every 7 days very seriously.  Not only did I not want to use a site twice in a week, but I didn’t want two shots within a site anywhere close to each other.  I know that on a few occasions I’ve thought I was spreading my shot locations apart, only to realize after I do the shot that I’ve messed up and those usually hurt more.  My husband still has the urge to get out a permanent marker to identify spots!  I think I’m getting better at it, but it’s certainly not fool-proof.

I took another stab at seeing how far apart I could get the injection sites within each shot location.  I’m still not injecting in my thighs, so I’m using my tush/bottom as the alternative shot location.  Also, while I used to like doing shots in my arms, I’m no longer fond of that location!  Those hurt now, but I’m not quite ready to ditch them from the rotation.  I’m not even sure what other spot I’d use.

Here’s what I came up with:

Injection Sites - Updated

Injection Sites - Updated

I did receive some useful guidance from my nurse at Dr. Specialist’s office.  She advised me that I can use far more of my stomach area than I am currently using.  I can go further up as well as further out, even around to what I consider my hips (not what Shared Solutions considers my hips.)  I’ve not yet figured out how to work that into my shot rotations.  I’m basically saving those outer tummy areas for times when I can’t do another shot location for one reason or another.  For example, I still need someone to keep an eye on the red line for me on some of the shots behind me (I can’t always hear that little noise the thing makes.)  I also realized I was pushing too hard on the AutoJect, so Hubby will help me hold the thing so that I don’t press in too far.  However, I imagine there will be a time when someone isn’t around to help me for those shots, so I plan to use the other tummy/hip options then.

May 10, 2009

Happy Mother’s Day!

Filed under: Uncategorized — by mseds @ 9:37 pm
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I had a fantastic Mother’s Day!  It started with breakfast in bed courtesy of Hubby and Big Sister.  They got Little Sister involved just before bringing it into me so that she could join in the fun, too.  I got to eat breakfast all by myself and got to watch the morning news for a change.

After that they headed off to Sunday School and I got to have the house to myself.  I cooked almost all of my favorite recipes (zucchini bread, baked brie, corn cheese quiche) while listening to my favorite CD, at top volume, of course.  I actually like to cook when I have the house to myself and can concentrate and when I don’t get interrupted or side-tracked.

We had our moms over along with my aunt and dad for a nice brunch.  I ate far too much and only have 1.5 Points left in my weekly bank that will have to get me through Tuesday, but it was all so good!  Last time on Weight Watchers I learned not to beat myself up for rare splurges, so I don’t feel bad in the least.  It will all balance out and the important thing is that I’m not eating like this everyday anymore.

The girls gave me such sweet presents, all of which were handmade.  Little Sister actually wrote her name in the card she made me at school!!!  That brought a tear to my eye.  She usually flat out refuses to write her name.  She’s working on it with her occupational therapist, but it’s a real challenge for her.  She’s very stubborn and usually refuses to even try.  She won’t even trace the letters if we draw dotted lines on cards.  Some letters were backwards or a bit twisted, but it was obviously her name and I’m so proud of her!

Happy Mother’s Day everyone!

May 6, 2009

Little Sister’s Dental Surgery

Filed under: Uncategorized — by mseds @ 8:49 am
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Yesterday Little Sister had her dental surgery.  This was her 4th time under general anesthesia and she’s only 4.  That was definitely a concern, but at least this was the easiest time.

We decided to tell her about the plans the night before.  Hubby explained to her that she was going to get her teeth fixed the next morning and that she’d sleep through it.  Surprisingly there were no tears at all!  She’s so used to doctors, so this was nothing new to her.  Perhaps that helped or maybe we just got lucky.  We followed that up with letting her pick dinner (nuggets, mac & cheese, and mozzarella sticks with a crescent roll) and dessert (mint chocolate chip ice cream sundaes.)  We even ate in front of the T.V. and she got to pick the show.  Pretty good deal, if you ask me!  She was even okay at bedtime.  She was concerned that she wouldn’t get to drink in the morning, so we did an extra sip of water before bed and she was fine with that.  I was very impressed.

The next morning we got her up an hour and a half early and threw her into the car in her PJs.  We were at the hospital by 7 a.m.  Check in was quick and we were brought back moments later.  We never used the word “hospital” with her, but it was very clear we stepped into a hospital at that point.  I was worried that she was going to freak since it looked identical to the emergency room we were at there after her tonsils were removed.  Thankfully she didn’t seem to notice and was pretty calm!  She even let us change her into the special PJs from the nurse.  She started to get a little nervous then, but she willingly walked to the scale to get weighed.  They gave her a cute purple teddy bear to keep that was obviously hand-made by a generous donor.

We got back to the room and turned on PBS.  Then a nurse wanted to take her blood pressure, but I asked that they wait until after she’s at least had giggle juice.  They had no problem with that, thank goodness!  Little Sister HATES getting her blood pressure taken.  Soon after that the anesthesiologist came in and we chatted.  They let me give her some giggle juice and we waited for it to kick in.  She definitely got very, very loopy.  It was so funny to watch!  Her smiles cracked me up, as did her fascination with her hand.  I wish we could have gotten some of that to take with!  During this time we got to talk with her dentist.  I mentioned the few things I have been concerned about, but that they don’t get to check during regular visits because Little Sister just doesn’t sit still enough and because she’s generally not calm at the dentist’s office.  The dentist said it would take between 1.5 and 2.5 hours.  By 8 a.m. they were wheeling her away.

Hubby and I got breakfast and waited in the lobby area.  An hour and a half passed quickly.  At 2 hours we started to worry.  We just hoped that they didn’t have to pull a tooth, because Little Sister would have freaked.  At that point we thought we’d be lucky if there were just root canals and caps.  Big Sister had that, so hopefully Little Sister wouldn’t mind.  Then at around 11 the dentist came out and said Little Sister did great!  She only needed 8 cavities filled and they used all white fillings so she won’t even know!!!  WAHOO!  She also did a very good cleaning and had to do some work along the gum line.  We had asked about geographic tongue, which her other dentist mentioned at her last exam.  This dentist saw one area that may have looked like that, but apparently these things come and go, so it’s not clear if she has it or not.  We did learn that her Ehlers-Danlos is affecting her tongue.  About one out of five taste buds are larger than the others.  It’s  a collagen thing.  I thought that was interesting.

We finally got back to see Little Sister at around 11:30.  While she did very well before surgery, coming out of anesthesia was not pleasant.  She was pretty upset.  Like most other kids, the IV was upsetting and they had the darn blood pressure cuff on her that scared her to bits when it randomly tightened.  We finally got her to agree to try a popsicle, but she said it tasted funny.  We moved onto apple juice and got her to drink all of 1 oz.  Apparently that was good enough because around 12:30 they agreed to take off the blood pressure cuff and got the IV out soon thereafter.  We were headed home around 1 p.m.

She was groggy the next couple of hours, but perked up around 3 p.m.  She was ready to play and to eat something.  By 4 p.m. she was demanding to do something fun.  We had a Cinco de Mayo party to go to that night, so we were out the door by 5:15.  She did great!  She looked drugged and her mouth area was a bit swollen, but otherwise she was fine.

Thank goodness this is over.  My goal is to stay out of doctor’s offices until I see Dr. Generalist in July!

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.

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