Wednesday, June 30, 2010

Gaining Water Weight While Traveling the Waters of Alaska

When leaving for vacation on this Alaskan cruise, I was concerned about gaining some of the weight back which I have worked hard to lose in the past six months.  While on the cruise, I was pleased to see so many wonderful food choices.  However, I did seem to be thirsty much of the time.

The result of mild dehydration was water retention and I did weigh-in at 11 pounds higher than when I left after the 10-day vacation.  In the post linked below, I share that the morning after I returned already some of that weight was 'lost.'  On Monday, more dropped.  The scale continued to go down on Tuesday and even today.

So far I am back to 242.9 lbs which is only 1.7 lbs heavier than my lowest weight in the past month (or several years for that matter).  I'll take it.  If the most I gained after eating well (yes, I did enjoy cheesecake and plenty of tasty goodies) was 2 pounds, then I'd call this a success!!

Water weight is interesting.  It can come on quickly, but it also goes away quickly.  Folks who are watching their weight might get frustrated with the up-and-down, but this is one reason why you really should only weigh once a week under the same circumstances. 

Read this post in its entirety:

Cruising and Dieting: Is it possible to do both at the same time?

Tuesday, June 29, 2010

Disease Management and Gender in MS

Today we will discuss possible differences men and women may have in health-related quality of life, symptom management, treatment management, and even personality.

Compliance and Disease Management
A recent study published in the Journal of Managed Care Pharmacy (JMCP) sought to evaluate gender differences in self-reported clinical characteristics, symptom awareness, and perceived ability to manage therapy among MS patients taking a disease-modifying drug.  How do we respond differently to our MS?

Of 4700 patients surveyed, only 44.1% responded.  Of those 2022 patients, 80.6% were female, 82.3% were relapsing-remitting, and 83.1% were taking Avonex (33.4%), Rebif (15.9%), or Copaxone (33.8%).  Curious that Betaseron, Tysabri, or Novantrone were not called out as well, only referred to as the 16.9% who were not using one of the drugs mentioned above. 

The flip side of the 2022 patients who responded is that 19.4% were male (4:1 ratio, women to men) and 17.7% were progressive.  Comparatively, the men were typically older and a great proportion of them had more progressive MS.  This reinforces what we discussed in MS in Men vs. Women: Does Gender Matter?

Read this post in its entirety:

MS in Men and Women: Disability, Compliance, Personality, and Mental Health

Sunday, June 27, 2010

The Rainbow Connection

When planning to stop in Seattle before the cruise to Alaska, there were several things which I really wanted to do.  One of those was to meet with MS bloggers who live in the area.

Diane of A Stellarlife has already detailed the day we had, laughing, giggling, harassing each other with big smiles and kind eyes.  I had no idea until reading Diane's post that she had a difficult morning that day.  She didn't let on at all.  But then again, we were immediately laughing so much that anything which had happened up until that point didn't seem to matter much anyways.

Webster drove up from Tacoma, braving the traffic and distance to come meet.  When Webster arrived, it was amusing when this sweet lady walked around the corner into the Bistro area where Jen, her mother Mary, Rob, and I were already getting settled.  Amusing because she was recognizing and identifying Jen and myself.  I was thinking "is this Gretchen, Webster, Zoomdoggies or somebody else?  Please tell us soon who you are."

As soon as Diane came downstairs, the cameras and camcorders were brought out.  I shot a few short videos while observing the growing chaos, but since I did say that they wouldn't end up on the website, they won't.  And Webster, I still believe that your clip is one of the funniest of that introduction time.  "But you never know what we're going to say," says Webster.  So true, so true.

When Gretchen showed up, it was pretty exciting for me on a couple of levels.  Shortly after I first ever mentioned that I had both MS and RA, I received an email from Gretchen sharing that she too had both diseases.  Over the years now (I can hardly believe that it's really been years that I've known many of these folks online), Gretchen has provided lots of RA/MS support.  We even both use the same IV treatment, Rituxan, which is cool as it is not at all as common as some of the other RA drugs.

Jen of MS Strength was one of the MS bloggers I met in April at Joan's place in Delaware.  It was completely difficult to remember that this day in Seattle was only the 2nd time I had ever met Jen in person.  Very surreal to feel as though she lives across town and we've known each other for a long time.  And Jen, I so wanted to include the clip in which you stuck out your tongue, but I didn't.  Maybe next time.....

Along for the ride were Rob, my boyfriend, and Mary who is Jen's mother.  The four of us, plus Jen's friend Norene, later toured Seattle and boarded the cruise to Alaska on the next day.  There are so many stories to share about these adventures that I will save them for future posts.

However, before breaking up our meeting at Diane's place, Diane gave us all a special treat.  She sang a special rendition of "The Rainbow Connection."  I might be the only one who got it on film, so it must be included below.  Diane, you did such a wonderful job and I'm glad that we can share that with our wider MS blogging community.

Diane, your kind words to me as we were departing are very special and I thank you for those!!  Also, thanks for allowing a little hug.  We can leave the kisses to Jen.  She's good with the smootches apparently.  ;)

The Rainbow Connection and MS Bloggers Meet in Seattle

Saturday, June 26, 2010

Back Home and Asleep

Finally home from a 10-day trip to Seattle and beyond.  There is so much to tell about what occurred during this trip that I will have to share each story one at a time.  Trust me, there is lots to share.

Now that I'm home, I've been downloading photos and videos onto my computer and sleeping for most of today.  I also note that a couple posts I had scheduled to go up while I was gone did not post.  So several are going out today, but with their intended date marked.  ;)

On the trip, I got to meet several wonderful individuals in Seattle and on the "Cruise for a Case" organized by the Multiple Sclerosis Foundation.  This cruise went up to Alaska and made a stop in British Columbia.  Lots of photos will come later.

One of many highlights of the trip included meeting other MS bloggers in Seattle.  Diane of A Stellarlife hosted a gathering and even serenaded us with a special rendition of "Rainbow Connection."  After putting together a brief video of the event, I will post it tomorrow. 

So many MS bloggers were met on this trip.  So much great scenery.  And much more great company.  More information to come!

Thursday, June 24, 2010

Happy Birthday Rob!!

I'm sure that we're having a great time 
in Victoria, British Columbia.  :)

Tuesday, June 22, 2010

The Pregnancy Hormone and MS

Estriol and Pregnancy
Pregnancy is characterized by the presence of potentially immunomodulatory and neuroprotective hormones including estrogens, cortisol, progesterone, and prolactin. It is believed that the secretion of these factors are important for the CNS neuronal and oligodendroglial cell lineages during development of the baby.  The mother’s body goes through many other changes as well.

Estriol is the estrogen hormone which is most significant for multiple sclerosis.  It is produced by the placenta during pregnancy and seems to have a protective quality on the immune system, as well as the central nervous system, for the mother.  Used therapeutically, estriol has been shown to have anti-inflammatory as well as neuroprotective effects in women with MS.

Read this post in its entirety:

MS in Men and Women: The Role of Estriol in Women

Monday, June 21, 2010

Men, Women, RA, Sex, and Relationships

Studies repeatedly acknowledge that there are differences concerning the sexual health between women and men with RA, as noted in a literature review published in 2009 focused on the sexual health of women living with RA.  Investigating areas categorized as general sexual problems, sexual satisfaction, sexual desire, sexual performance, and sexual functioning, researchers share that RA affects the sexual health of women as a result of pain, reduced joint mobility, fatigue, depression, and body image alterations.  Very few solutions were offered in the literature with the most common being the need for increased information and communication, as well as physiotherapy.

Among 52 female RA patients who participated in a 2006 study, 62% reported difficulties in sexual performance, of whom 17% were totally unable to engage in sexual intercourse because of arthritis.  Sexual desire or satisfaction were diminished in 46% of patients and completely lost in another 46%.  Sexual disability correlated with disease activity, hip (but not knee) joint disease, seropositivity, and diminished desire.  Pain, age, and depression were significant determinants for sexual dissatisfaction.

Read this post in its entirety:

RA and Sex: Relationships Matter

Saturday, June 19, 2010

Multiple Sclerosis Seminar Near Washington, D.C.

Do you live in Virginia, Maryland, or Washington, D.C.?  
Do you have MS or want to learn more about MS?
Come to the Annual Fall MS Seminar 2010

Multiple Sclerosis: A New Decade
Saturday, September 25, 2010

Westin Tysons Corner Hotel
7801 Leesburg Pike
Falls Church VA 22043

(Tentative Program)

8:00 a.m. to 8:15 a.m.


8:15 a.m. to 9:15 a.m.

Alternative Medicine, Complementary Medicine and MS

9:15 a.m. to 10:00 a.m.

MS Medications in the Next Decade

10:00 a.m. to 10:30 a.m. – Break and Displays

10:30 a.m. to 11:15 a.m.

Focus on Nutritional Health
Mary L. Hunt, RD

11:15 a.m. to 11:45 a.m.

Maximizing Your Medical Care

11:45 a.m. to 12:30 p.m.

The Stresses of Coping With MS

Dr. James Simsarian is my neurologist at the Neurology Center of Fairfax and D. Michelle Smith is my favorite neuro nurse.  You've heard me talk about her before.

This seminar is NOT limited to patients of the Neurology Center of Fairfax.  It is open to all patients who wish to attend, regardless of where you come in from.  I will share contact information for registration when I receive it.

Thursday, June 17, 2010

Carnival of MS Bloggers #65

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Future, Our Friends, and Overcoming Denial

Raggling One’s Bed by Katherine, aka oligoclonal
at Properly Referred to as "That Stupid Disease"

The clinical version of MS “fatigue” is certainly a different breed of animal than what I understand to be in the “normal” range for people who do not suffer from MS.
Today, after a full night’s sleep, proper diet and hydration and pretty standard low-intensity household activities, I began to crumple. Within an hour of trying (as always) to fight it through, I was face down on my mattress as unmoving as though asleep. Were sleep only a possible relief, that is. My mind, though “foggy,” was pristinely alert; though not suffering from actual paralysis (another different animal altogether*) I could not make my body move — from a corporal weakness felt not even by long distance runners after a full day of ankle weights.

So, for two hours I laid motionless. As soon as I felt the possibility of movement, I sat up and walked into the kitchen to start prepping a dinner salad for three. I then went into the pool and came, with the cool water bringing my core body temperature down, more awake than I had been all day. The “cog fog” lifted into the clear blue sky and I was able to swim heartily, and laugh.

I will never again be certain of what tomorrow will bring. The thought of that no longer frightens me, but it does bore me to pieces.

*Having MS makes friendships and general life activities difficult because when attending an event or invited to someone’s home there is no predicting which animal from the zoo will accompany you. There will always be a monkey on your back (a given cliche) — but sometimes, too, a tranquilized elephant or angry flightless bird. And your friends or strangers will not know which you’ll happen to have with you.

Or, perhaps, think of me this way: if you are my friend and invite me over, know I will be bringing an infant with me who screams at random intervals and cannot be consoled.

Untitled #2 by Katherine

It's not always about me
by Catherine at A Life Coping With MS

Getting frustrated about things I cannot change is something I usually don’t indulge in. I’ve always had the attitude that what’s done is done so you’re better to face it head on than stress about the stuff you can’t fix.

My approach to my MS diagnosis has pretty much followed this path and it has stood me in good stead so far.

However, there is one aspect about having MS that frustrates greatly - and it’s something I will never be able to change. And that’s the impact my illness has on those around me.

This hit me hardest when first diagnosed. While I was striding forward, convincing everyone in my wake that this really wasn’t the worst thing to happen, I watched my husband and parents struggle to come to terms with it all.

Looking at things from their perspective I would probably be the same. After all, when someone you love is hurt, whether that be a cut on the knee or a life changing diagnosis, you want to kiss it better.

But they must look at me and I think, ‘What can I do to help?’.
In truth, despite not having a magic wand to make me better overnight, they have helped massively, in all sorts of ways.

My mum helps with practical stuff like the ironing and she has this unbelievable gift of coming into my home like a whirlwind and somehow leaving 60 minutes later with a clean house left in her wake - genius!

My dad just keeps the jokes coming ... and then, every so often, we have a heart to heart where I get to off-load lots of stuff I’ve been thinking and/or feeling and I feel miles better.

And then there’s my darling husband who worries like mad and takes the brunt of any mad mood I may indulge in. He has held me tight while I’ve sobbed (which I might add happens so rarely I think he’s sort of glad I’m actually having a cry so I’m not trying to be superwoman all the time!) and told me very patiently that no matter what the road ahead brings, we will face it together.

The Parking Permit or How I Conquered Denial
by Karen at Meandering...One Moment Please

How come...before I got my Accessible Parking Permit, the only empty spaces in the lot were the handicap ones, and now that I have my permit - those spaces are all full?!!

About a month after I was diagnosed with MS, I got my Accessible Parking Permit. I had to go down to the DMV and get my temporary copy to use while I was waiting for the spiffy laminated one to be delivered in the mail.

Driving home, I was thinking, I will probably never use this, I don't really need this... nah, I won't use it, I won't even need to use it! (DENIAL) I pulled into my driveway and turned off the car, took the permit from my purse and thought, where should I keep it? In the glove compartment maybe, or tuck it in the visor. As I sat there trying to make this momentous decision, the "funniest" thing happened. I was looking at the permit, and saw the initials P/D on the front. Hmmmmm...wonder what that means? Underneath the initials, was one word; PERMANENT. Huh? What are they talking about, this is my temporary permit, I will be getting my permanent one in the m.........

At that moment it felt like all the air had been sucked out of the car! It was hard to breathe, I could feel my heart pounding hard in my chest, my throat tightened as a low guttural scream struggled upward, trying to escape between my taunt lips, tears welled up in my eyes. Then it happened...IT HIT hit me right smack in the face! I have Multiple Sclerosis, it's for real, I'm disabled, and it is definitely PERMANENT!

That one little piece of paper said it all, and denial was no longer an option. I just sat in the car and cried for about half an hour. Finally, trying to pull myself together, I hobbled out of the car with my cane, permit in hand, and made my way into the house.

Hubbers was just in from work, and as he helped me take my boots off, I said, "Got my parking permit today". "And how did that go?" he asked? "Not so good", I whispered tearfully, while poking at the word permanent on the permit. He nodded, and I saw his eyes moisten, just before he wrapped his arms around me.  He held me for what seemed like the longest time.

It was a torturous night for both of us, neither of us able to sleep or even talk much. I spent most of that evening transfixed by the flames in the fireplace. At some point I had obviously drifted off, because I woke, the fire was out, and I could smell the aroma of bacon wafting out from the kitchen.

Hubbers heard me stirring, and brought me a hot cup of tea  served with a smile and a kiss. At breakfast, we talked a bit about our plans for the weekend, and he mentioned that we had yet to start our Christmas shopping. With a pained groan, I said oh no, not the mall, we can never get a parking spot at this time of year...

And the history ;)

This concludes the 65th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 1, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 29, 2010.

Thank you.

Comments for this post.

Wednesday, June 16, 2010

On the Road Again

Very much too early this morning, I boarded a plane headed to the great Northwest.  Seattle here I come.  Tomorrow, I will be meeting up with some other MS bloggers and MSers in the area.  Then Friday, it's time to hop on a ship to cruise up to Alaska.  Yippee!!

Please feel free to continue leaving comments, but know that I will not be able to respond to them in all likelihood.  I'll see you cats when I get home on June 26.  Until then keep the blogosphere company.  LOL.


Tuesday, June 15, 2010

Sex Hormones in Women with MS

Estrogen hormones affect female sexual development and function.  Both men and women produce estrogen at varying amounts.  The most important types of estrogen hormones include estradiol, estriol, and estrone.  Estrogen hormones are produced in the ovaries and in the placenta during pregnancy.  Just like testosterone, small amounts are produced by the adrenal glands in both genders.

Estradiol is the most commonly measured type of estrogen for non-pregnant women, according to WebMD.  Levels vary during the menstrual cycle and drop to a very low level after menopause.  Estriol is produced in large amounts by the placenta during pregnancy and can be detected in the blood and urine.  Estrone can be used to measure estrogen levels in women who have gone through menopause.

Just as in men, sex hormones can provide neuroprotective effects in women who have MS.

Read this post in its entirety:

MS in Men and Women: The Role of Sex Hormones in Women

Monday, June 14, 2010

Grants Awarded for CCSVI Studies

The National MS Society announced the recipients of 7 grants focusing on the role of CCSVI (Chronic Cerebrospinal Venous Insufficiency) in MS totaling $2.4 million.  Over the weekend, I've read conflicting opinions from MS patients as to the implications of the studies which received these grant commitments, both negative and positive.

Rather than give a rundown of the situation, I'd like to send you over to read the latest post by Marc (The Wheelchair Kamikaze), a man who has an elegant way of expression and knack for getting to the heart of the matter.  I was working on collecting my thoughts, then found Marc's post in my feedreader.

Keep in mind that CCSVI as it stands now is a theory.  A theory is simply a hypothesis, tentative in nature.  A hypothesis must be falsifiable in order to be considered scientific.  That something is "falsifiable" does not mean that it is false.  It means that IF it is false, that can be shown by observation or experimentation.

An attempt to disprove a theory does not necessitate that the one conducting the experiment believes the theory to be false or worthless.  It is simply a part of the scientific process.  And in science, especially in medicine, theories must be validated and experiments replicated.

While some patients are feeling impatient with the need to adhere to the scientific process, I will remain neutral and observe the responses reported by patients who have had the CCSVI "liberation" procedure.  There are negative, positive, and even neutral stories to be found on the web of those who have undergone either angioplasty or stenting.

The wait will be a long one, but I will eagerly look forward to the early reports from these 7 researchers and their teams.  In the meantime, sign-up to attend the live webcast "What's new in MS research and treatment" which will include an international overview of CCSVI among other topics.

Saturday, June 12, 2010

Life Interrupted: Interview with Author Chris Tatevosian

What happens when life is interrupted by chronic illness or disability?  Illness affects not only the individual but also their loved ones, and this often puts stress on one's relationship.

Chris Tatevosian is a man living with multiple sclerosis, a man whose illness killed a relationship, and a man who found love again.  After writing his book, Life Interrupted, It's Not All About Me, Chris's purpose in life has become a ministry providing awareness and support for individuals to deal more positively with the stresses illness brings.

To listen to a recent interview with Chris at, follow the links below or go here.

Audio Podcasts
“You have to think harder to think things through but it CAN be done, you can’t just give up & get depressed lay in bed for the rest of your life..”
– Chris Tatevosian

How Chris came to write his book, overcoming the stress & anxiety, depression, and the "poor me" attitude caused by his chronic illness. And how you have to think of the loved ones around you.

“You have to be conscious of what you do & say… it’s difficult enough for your spouse and family members to watch you struggle… there’s nothing they can do about it.. but you can’t just let that misery be taken out on them..” – Chris Tatevosian

“To be honest I think this book applies not only to people with chronic illness but most of us who don’t have a chronic illness.. we act the same way…like spoilt brats we feel the world should do what we want.” – Naren, CEO & President of

The fears Chris faced: meeting a woman, never having a purpose again, possibility of having to move into a nursing home. Also, where you can purchase Chris book, and about his talk-show Winning Life through Pain.

“I asked Jane, why would you even consider dating someone with MS? It’s like buying a vase with a hole on the bottom and her response was…” – Chris Tatevosian

Friday, June 11, 2010

Blog Designs and Chocolate

I've been updating the appearance of the blog today.  Do you like it?  The colors are bold and I'm trying to clean up the sidebar.  Things are still a bit of a mess (please pardon that). 

But in the meantime, I thought I'd share a memory of Switzerland.  Oh howdy, do I wish I could go back to that chocolate shop.  Yum!!

Thursday, June 10, 2010


One year ago today, Sherry lost her daughter Nicole. My thoughts go out to you today as I'm lighting this virtual candle in Nicole's honor. 

Wednesday, June 9, 2010

Happy to be 11% Less

I am happy to report that I've achieved my first 10% weight loss since January 2010.  The last few weeks have been bumpy with holidays, visits with friends, and extra doses of steroids.  Water weight drastically increased the number on the scale.  However, in less than three days, 10 pounds drop off quickly.  Crazy roller coaster.

This afternoon I weighed in at 242.3 pounds. Even less than seen above.  :)

Read this post in its entirety:

The Weight Loss Journey May Have a Few Twists and Turns - Celebrate Each Success

Tuesday, June 8, 2010

Testosterone and Men with MS

Testosterone is a hormone which affects sexual features and development.  Men have about ten times more testosterone in their blood than women.  Yes, women do have testosterone which is produced by the ovaries, and both sexes have a small amount produced by the adrenal glands.

In males, testosterone levels are low before puberty, increase during puberty, peak around the age of 40, then gradually lessen as men age.  Coincidentally, or maybe not, men are diagnosed with MS more frequently just as their testosterone levels begin to drop.

Protection from MS

Testosterone seems to protect young men from developing MS. Used therapeutically, it has a protective quality, inducing anti-inflammatory and neuroprotective effects. A recent small pilot study involving 10 men with RRMS has supported this finding. As the study used a crossover design, each patient served as his own control with a 6-month observation period followed by 12-months of treatment with gel containing 100mg testosterone (AndroGel®) applied to the upper arms once per day.

Read this post in its entirety:

MS in Men and Women: The Role of Testosterone in Men

Monday, June 7, 2010

RA and Sex: Hormones and Methotrexate

When you think of rheumatoid arthritis, you might picture swollen joints, stiffness, pain, deformity, and a lifetime of medications and doctors’ visits.  Do you ever think of sex?  Does your rheumatologist ask about your sex life?  Should she or he?

In case you didn’t already know, I have both multiple sclerosis and rheumatoid arthritis.  Since MS is a neurological disease, the majority of bodily functions can be affected in one way or another.  Sexual function is one of those.

As part of a routine neurological office visit, I am asked about symptoms I may be experiencing.  Near the end of the list is always - “Are you having any problems with bladder/bowel function, or experiencing any sexual dysfunction?” 

Read this post in its entirety:

RA and Sex: Could Estrogen Levels or Methotrexate Affect Your Sex Life?

Sunday, June 6, 2010

New FDA Warnings for Xenical and Alli

Last week the U.S. Food and Drug Administration (FDA) announced the approval of revised labeling for the prescription weight-loss drug Xenical (orlistat 120 mg) and its OTC version Alli (orlistat 60 mg). 

The revised label carries new safety information regarding cases of severe liver injury that have been reported with the use of orlistat.  It is important to note that these cases have occurred only rarely, estimated at 13 cases out of the approximate 40 million people worldwide who have used this medication since its approval in 1999 (Xenical) and 2007 (Alli).

Of the 13 cases of severe livery injury, 12 were foreign reports associated with the use of Xenical and one was a U.S. report associated with Alli use.  Two patients died from liver failure and three patients required liver transplants.  A causal relationship has not been established as other factors or drugs may have contributed to the development of severe liver injury.

Read this post in its entirety:

Weight Loss Drugs, Xenical and Alli, Receive New FDA Warning Label

Saturday, June 5, 2010

Summer time and medical stuff

It's Saturday afternoon and I'm in North Carolina for the weekend.  (I live outside DC.)  It is extremely hot and Rob and two other families are at the park taking in a walk.  I've opted to stay in the air conditioned home with two dogs who are off sleeping.  Maybe I'll close this computer soon and take my own nap.

I'm finally feeling emotionally better than I was on Thursday.  I didn't talk about it here, but did mention my unfortunate nurse/IV experience on Facebook and Twitter.  In short it took 3 hours, five nurses, and nine sticks to get an IV started on me for the Rituxan infusion.  Ultimately it was the head ICU nurse and her best pediatric ICU nurse who got the IV started.

Sometimes you really can't control how your body physically reacts to situations.  I think it was about the 7th or 8th stick where all the blood retreated from my extremities, which didn't make the situation any easier.  Deep down fear will do that to you.

I had brought my own heating pad with me to try to get the veins in my arms or hands to plump up extra large.  It came in handy when the ICU nurse was calmly taking her own look for a vein and noticed that my fingers were ice cold despite my arms being wrapped up in significant heat.

She was the nurse who called for back-up and knew who could get an IV started.  She was also a nurse who sat with me while we waited, talked with me, and literally held my hand, even stroking it calmly.  Now that's a special touch, truly.

We finally got the drip going at about 12:45pm when I had arrived at the Outpatient Infusion Center at 9:00am.  It was a long day, but at least I was done in 8.5 hours.  Two weeks ago the experience took 10 hours.

This time it took until after 2 hours of Rituxan and getting up to a drip speed of 300ml/hr that I started experiencing the infusion-related reaction.  I spoke up quickly, we got more steroids and benadryl onboard, and slowed down the drip speed.  I was pleased that my body took longer to get to the reaction which has happened during each infusion so far.  That's progress!!

So far Rituxan has been good for me.  It has definitely helped my RA and I think that it might be helping my MS too.  A bonus with the infusion is the boost of steroids which come with it.  I notice an immediate improvement in how my legs feel afterwards which is something I have to talk to my neurologist about.  We had talked about maybe doing pulse steroids but were holding off.

One thing which really bugged me on Thursday was that the infusion nurses kept talking about me getting a port installed for easy access to my veins.  Of course it would make their job easier.  But I'm not so sure I'm ready to have surgery to get something permanently installed in my chest and threaded through a big vein.  That just seems so much more "medical" than getting an IV started every once in a while.

Something to seriously consider.  Besides having MS and RA, I've been pretty healthy.  The only surgeries I've had were to remove my tonsils and wisdom teeth.  I had stitches in my leg when I was 8 yrs old.  But nothing else.

I guess I'm really a scaredy-cat after all.  IV infusions, MRIs, etc don't bother me all that much and I've never really been afraid around needles.....until this past Thursday.  I experienced fear.

Fear of being hurt further.  Fear of not being able to get my treatment on schedule.  Fear of messing with something which seems to be working.  I didn't want to postpone, especially since the veins would not likely be any better a day later.  I had this trip to take and in two weeks I'll be on a cruise to Alaska.

I've got things to do and a schedule to maintain.  I've got life to attend to.  Thankfully the ICU nurses got the job done.  I was so happy and pleased, and definitely relieved.  Unbelievably relieved.

So maybe I should go take that nap.  Tonight we will have 8 adults, 6 children, 2 dogs, and 2 hiding cats here for dinner.  It's going to be chaos.  It's life and I'm staying part of it.

Happy Saturday to all and keep cool.  ;)

Thursday, June 3, 2010

Carnival of MS Bloggers #64

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Inspiration and Attitude

by Kaleidoscope Muff

Not so much as Carly Simon sang it (I’m really dating myself, aren’t I? Actually it was one of my lullabies. Now watch nose grow…) Anyway I know I am vain, but I have no reason to be. I’m certainly nothing special to look at, but then again, I don’t spook the horses in the street! I’m intelligent, but not so much that I’m in any unique intellectual category. I’m talented in different areas (or was,) but so are many others, and they even more so. So why does conceit find an established dwelling place within me? Maybe it’s a defense mechanism – I feel so un-everything because of what this nasty MS has done to me that I try to build myself up? Who knows? I’m just aware of the fact that when people compliment me, I beam. It used to be that if someone admired anything about me, I’d go about with the whole humble act.

“That’s a beautiful outfit,”
“What, this old thing?”

“You look great.”
“Oh, I do not. You’re just saying that.”

“You do such nice [drawing, painting, stitching..”]
“Oh, go on. I’m not that good.”

Okay, maybe that’s exaggerated, but I never accepted compliments well. Now, they fill a need in me that I never knew existed. I’ve been watching myself lately, and I’m embarrassed of ME for being like this. This past week, someone admired something I was wearing, and I actually just said “Thank you” and meant it! The same went when a worker at my mother’s nursing home, said to an assembled group of people that I was so intelligent, and I knew so many things. (That was brought on because I had helped her get through several activities when she was unsure of herself. And that day (a cooking demonstration) I had explained to her what ‘crêpes’ were. Then I conversed with the chef a little in French.) So, I felt very accomplished when she said this. Yesterday, my hair stylist told me I was walking better, and using my hand so well. (She has watched me decline over the years.) I thanked her, and then I actually began to believe her! For the rest of the day, I actually did feel as if I were somewhat better! I know it’s all in my head (literally AND figuratively) but what a difference it made in my attitude.

Now I’m thinking that if I can keep being vain and accepting compliments, maybe I’ll just keep being better. Or is it really acting? Could there be some underlying significance to this?


by Dan Digmann

We wanted to share with everyone the link to an incredible multimedia package about us that is in the April 25 Morning Sun’s print and online editions.

The project started when Morning Sun photographer Ryan Evon approached us about following us around to develop a photo essay for the area daily newspaper. This package represents more than a year’s worth of his work, and we couldn’t be happier with how it turned out. We are grateful for the opportunity to share our story and increase MS awareness.

Click here to see the story, photos and videos that tell our story and how we try to help others to move forward. Please check it out and share it with others! Thanks for checking this out and for visiting us on our blog!

This concludes the 64th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 17, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 13, 2010.

Thank you.

Comments for this post.

Wednesday, June 2, 2010

Veins, IVs and Weight Loss?

Just puzzling today.  Could weight loss potentially make it so that veins have more room to recede back into your arms?  Ya know, less fat to push them to the surface.  Probably not.

I don't know.  But I've been drinking water and Gatorade (almost) like crazy in order to plump these suckers up.  I don't see any sign of improvement on easy vein identification.

Fingers crossed that tomorrow it takes fewer than six sticks and three nurses to get an IV started.

That's all.

Tuesday, June 1, 2010

Men and Women, Living with MS

Some of the issues identified in relation to gender and MS include:

* MS is more common in women, but severity of the disease may be worse in men.
* The prevalence of MS and ratio of women to men has increased during the 20th century and continues to increase.
* In studies involving men with MS, male gender was predictive of a shorter time period before an assistive walking device was required. For example, men were quicker to need devices such as canes after diagnosis.
* Men have a higher rate of cerebellar involvement and a higher risk of primary-progressive disease, both of which are factors associated with a poorer prognosis. A study has found that progranulin gene variability increases the risk of PPMS in men.
* The disease in women tends to be more inflammatory with greater number of gadolinium-enhancing lesions. Men tend to develop more “black holes” as seen on MRI scans.
* Some studies have shown gender has no effect on life expectancy in MS. Some studies have shown shorter than expected life expectancies of men with MS, others have shown longer than expected life expectancies. Perhaps MS in men doesn’t make a difference after all in longevity.

Read this post in its entirety:

MS in Men and Women: Does Gender Matter?