Tuesday, August 31, 2010

Ramblings, Updates and Fall Resoultions!

  • I need to join a gym. It will be good for my body. It will be good for my MS. So why can't I get my lazy self to the gym to sign up? Trying to motivate. . . the local YMCA is right down the street and they even give a discount to people w/ MS. So I need to look into that some more! Sept is a crazy month for me including a 10 day vacation so my goal is to join in Oct. Trying hard to motivate!
  • I need to find time to scrapbook. I miss my favorite hobby very much and I'm very far behind. I need to finish my Ireland vacation and start my 2010 scrapbook. I love scrapbooking and really haven't done any all summer so time to get back on track!
  • I'm in the VERY beginning stages of starting a private practice. There is a lot of upfront paperwork I have to do w/ insurance companies and it is a long process. But you have to start somewhere so that is what I'm doing. I also plan to design a professional website, business cards, pamphlets, etc. So this should keep me very busy but I'm excited about it b/c it will keep me involved in some adoption work and make me some extra money. Oh and I've also decided I'll do a "How to start a private practice" post at a later date. There is no to do list to follow out there so maybe I can help someone else in the future. I'm just happy I have a few people guiding me along the way.
  • I feel confident that no bed bugs came home w/ me. I did end up w/ several bites on my stomach and the back of my neck but I know those happened while at camp. So far no new ones since being home and it has been over a week. Keep your fingers crossed that all those little critters stayed at camp!
  • If I am being completely honest I have not been 100% caffeine free lately. I do have coffee some mornings at work or the occasional Coke. If I'm struggling w/ fatigue I need it to get through the work day. The good news is I'm sleeping pretty good lately (still taking sleeping pills though).
  • I love looking forward to and planning vacations. I'm going to CA at the end of Sept and I can't wait. I hope to go to London and the Italian Rivera in May (to visit Stacy) and to Oregon sometime next summer (to visit Meghan). Also hope to do a quick weekend trip to NJ to meet my Godson, Rais.
  • I'm in the process of planning a MS fundraiser at a bar for late fall (hopefully). I hope to pull off a great event but it is going to be a lot of work.
  • So I've come to realize that what I thought it true - most of the time I'm writing to just a handful of people. I really expected to hear from a few more people who I thought were reading? Hope my few followers/readers are enjoying! :)

Ok not sure if after writing that all day I feel better or more overwhelmed! Haha! Sometimes it is just good to get all the random stuff in my head out. Plus now I have certain things documented to hold me accountable!

I'm going to be hosting a blog hop on a chronic illness blog. So I need to come up w/ a question that other people w/ MS and/or other chronic illness will answer. What is something you want to know about people living w/ chronic illness? Ideas and suggestions would be appreciated.

Monday, August 30, 2010

The Many Faces of MS: A Roommate's Perspective

Here is the 4th installment of "The Many Faces of MS." If you haven't read the other installments read those first. You can find them here:

A Friend's Perspective

A Father's Perspective

A Mother's Perspective

This week Stephanie is my guest blogger. Stephanie was my roommate for two years and was the lucky one living with me when I got diagnosed. She was the first person I told (besides my parents who were w/ me) and she was such a great friend through it all. Steph just finished law school and will be working in LA starting in Oct. I'm flying out to CA at the end of Sept to help her move from San Fran (where her parents live) to LA. We are going to have a fun vacation!! I hope you enjoy Steph's perspective.


When you first learned that I had MS what went through your head?

When I first learned Jodi had MS, I was shocked. I knew she hadn't been feeling very well and had been experiencing some numbness in her limbs, but I remember Jodi trying to rationalize it after she had closed her foot in the door and thought she had pinched a nerve! I knew she had a doctor's appointment the morning she was diagnosed, but when she wasn't home later that day, I called her to see what was up. I was very concerned by the diagnosis she shared. MS? What does that mean and how was that going to affect her life?

I was even more concerned knowing that she had to stay in the hospital for the next week. One day everything was normal and the next things seemed to be turned upside down.

What did you know about MS (if anything)?

I knew next to nothing about MS- probably only the most extreme cases came to mind and this scared me. I had no idea at the time why Jodi would need to be hospitalized for a week and that was pretty scary too, especially since I am terrified of hospitals, but wanted to visit her just as soon as I heard the diagnosis.

My life has changed since I was diagnosed with MS. What about me living w/ MS has made the greatest impact of you? How have you dealt with that?

I think as Jodi's roommate at the time, the thing that made me most aware of Jodi living with MS was the constant shipments of shots to our house, and that they were stored in our fridge. Needles (like hospitals) also freak me out! But Jodi was so matter of fact about the necessary adjustments she needed to make in her life, much more so than I would ever be. It was difficult knowing that she would often be sick after her shot, but it was impressive how Jodi would never let the shot get in the way of a fun night out- she'd just plan around it and have plenty of Gatorade on hand!

Do you think I have changed in any noticeable way since being diagnosed with MS?

Honestly, I don't think Jodi has changed so much since her diagnosis. She just has a new cause! Since I met her Jodi has always been a champion for causes such as Habitat and the AFC Mentoring Program, amongst others. She always seemed to be volunteering for something or other, and now she just has a new cause that she has devoted herself to!

Anything else you want to tell my readers about what it is like to be "Another Face of MS?"

I think that something positive that came out of Jodi's diagnosis was the opportunity to really get to know her awesome family better. When Jodi was diagnosed, I think I had met Paula & Bob one or two times in passing, but after that day when her parents came to the house to pick up a bag that I had prepared for Jodi for the hospital, I have had the opportunity to share in more positive interactions with her family and they are terrific and amazingly supportive! It's been a real treat to get to know them better during the MS Walks and also sharing some holidays with them as well!

Knowing that Jodi is living with MS it also puts things into perspective for me. One sleepless night is nothing compared to the exhaustion I know Jodi has faced, and I guess it just makes you more aware of the people around you and particularly the idea that MS is somewhat of a silent disease, in that it doesn't necessarily manifest itself in a way that is visible to outsiders, so that if you didn't know Jodi, you wouldn't know that she has MS. So it just makes you a little more sensitive to the fact that we each have our own story, and that there's always more to someone than what just meets the eye.

Thanks so much for sharing your perspective Steph! I look forward to our vacation very much!

I hope you are enjoying "The Many Faces of MS" series. Unfortunately this will be the last installment unless any more of my family or friends would like to contribute. I would love to hear from more of you so just let me know!

Sunday, August 29, 2010

MS Does Not Like Busy Weekends!!

I had a very busy weekend following a very busy week. Stephanie is in town visiting so we went to dinner for Boston Restaurant Week (restaurant review coming) and then met Lynne for drinks. Then the following night I had an Elon alumni Happy Hour. So 2 nights out in a row after working is not usually a great idea for me. But I pushed it a little more and went to the Marshfield Fair with Taylor on Friday night which got me home late. Saturday I got up early (8AM on a weekend is early!) Stephanie and I were ready for shopping even though neither of us should be spending ANY money at all on clothes. We started out at the Christmas Tree Shop then to the Natick Mall and ended the day at the Wrentham Outlets. We were both exhausted by the end of all the shopping and walking and my legs/feet were screaming at me but I pushed on and we went to Franklin to babysit my nieces. Well anyone who has ever been around a 18 month old and 2 1/2 year old know that they have a lot of ENERGY! So we took them to dinner and for ice cream got home and did baths, pj's, played, read books and bed. I could have fallen asleep them but we decided to watch a movie "When in Rome" which is the WORST movie ever I might add. We ended up sleeping over there but didn't get to bed until after midnight and were woken this AM by to energetic cuties rearing to go at 7AM. So we got up and went out to breakfast with them. I think I was home in my own bed by 10AM and I crashed. I took a 3 hour nap and when I woke up still felt terrible. I was tingly, exhausted, had a headache. . . so back to sleep for a little long I went. Forced myself up to take a shower around 4 and met up w/ Stacy to take some photographs of her and her dog, Wallace.

A little more excitement tonight when I got a phone call from Steph (who is on the Cape w/ her boyfriend) stating that he was in the hospital and needed his appendix removed and she was stranded at the hotel w/ no car. Thankfully my mom lives on the Cape and came to the rescue. He is in surgery now and they are at the hospital. Lots of excitement and hoping he will be ok!

So if you aren't tired from reading that then you should tell me your secrets. I'm laying in bed watching the Emmy's and blogging. Hoping my MS will forgive me for such a busy weekend. I promise to be better behaved over this coming long weekend (maybe)!

And b/c you know I can do a post w/o pictures here are a few!


Love these girls SO much!

Peyton wanted to use my camera and she took this pic of Ella and I. Not too bad for a 2 yr old!


Seeing my nieces LOVING Dora and Diego. . . PRICELESS
(if you read the previous post that will make sense)

Peyton was so happy that she wanted to pose for 100 pics w/ Dora. She took Dora in the car w/ us when we went to dinner. When we got home I told her to go upstairs so we could do baths. She said, "Is Dora a bath toy?" I said "sure" and she proceeded to wash Dora's body and hair w/ soap then dried her all off when we were done. At bedtime she got her all settled in her bed w/ her other "friends." I really think she thinks blow up Dora is REAL. Ha ha! And Thank God Ella is flexible and willingly accepted Diego as her own since there is no way Peyton was going to separate from Dora!!

Marshfield Fair

Time spent in car from my office to Taylor's house 1 hour 45 minutes

Time spent in car from Taylor's house to Marshfield Fair 30 minutes

2 admissions $20


2 orders of delicious cheesy fries $13

Playing the dart game twice to win Dora and Diego for my nieces $10


Many rides at $1.25 per tickets and most rides needed 4 tickets $ ???

Kettle corn, cotton candy, lemonade and more $???


Continuing a 3 year tradition at the Marshfield Fair with Taylor. . . PRICELESS

Posing for silly pictures. . .
PRICELESS

Seeing cows pee, seeing the pigs eat a ton of food and petting goats. . . PRICELESS



Spending time with old friends. . .
PRICELESS





Taylor and I have gone to the Marshfield Fair together for the past 3 years. This year for the first time our friends Jenny, Max and Emelia joinned us too. I love that we have traditions that we have made together and look forward to eat year. Another favorite tradition is apple picking which is right around the corner!


Taylor "mooing" at the cow in 2009


On the Merry-go-Round in 2008

Wednesday, August 25, 2010

Rings for MS at TANIA Salon and Spa!

Rings for MS are everywhere (well not really but that would be cool). Rings for MS are now at
TANIA Salon and Spa where my social work collegueage also works part-time. After seeing my rings she asked her boss if they could display some at the salon which is in Wakefiled, MA. So hopefully I will sell some and be able to donate even more money to MS!!! If you live in the area feel free to go and check them out and while you are there get a haircut or a massage! Haha.

If you have not read about Rings for MS yet go here and here to learn all about my fundraiser and see pictures of the rings.

Tuesday, August 24, 2010

Knock, Knock. . .

Who's there?

YOU! (I hope)

The question I need answered is who exactly is you? Family, friends, strangers? I want to hear from you all. Sometimes I think nobody is even reading my blog. I know some of tell me you read but I want to know just how many of you are following me. So will you do me a favor and leave me a comment and tell me you are reading and how you found my blog. I would REALLY appreciate it!

If you wanted to do me an even bigger favor you can "follow me." Right now I only have 11 followers and I would love to have at least 30. You don't have to have a blog to follow me. So what are you waiting for?

Lastly for those of you on twitter will you follow me there. Twitter is much more fun when you have followers and people to follow. So if you follow me I'll follow you too! :) I'm jodibean328 and I have 19 followers. I'm hoping to get it up to 40!!!

THANKS in advance.

Monday, August 23, 2010

The Many Faces of MS - A Friend's Perspective

I hope you are enjoying this series of The Many Faces of MS. If you haven't read the others you should do that first!

A Mother's Perspective

A Father's Perspective

This week is part three and it is by my friend, Cara. Cara and I met in 2001 working at Riverside Outpatient Center (before I was an official Social Worker but she was). We have stayed good friends through the years and have the "social work connection" aka know what it feels like to work really hard helping others for low pay. Haha! I'm glad we've stayed so close and even though we don't get to see each other as often as we would like when we do we pick up right were we left off!

Cara and Jodi at the 2010 Boston MS Walk


When you first learned I had MS what went through your head?

When I first found out that Jodi had MS, I was in shock..Jodi is such an active and busy person, I was scared that this may change her life forever, in a negative way.


What did you know about MS (if anything)?

I knew a little about MS..my stepsister has MS and she is is her 50's and has had it for a long time. I also used to see a client that was wheelchair bound due to her MS and saw her inject the stinger from bee's into her. Therefore, my understanding of MS was complicated, yet I was able to see that there can be variations in the disease and that not everyone who has MS has the same symptoms, some are worse and some are very manageable.


My life has changed in so many ways since I was diagnosed with MS. What about me living with MS has had the greatest impact on you?

The greatest impact on me was when you told me that you had to take shots to help with your MS and also that you seem to have dealt with it very well because I don't think many people may have dealt with it as good as you. You rarely complain about your symptoms and if you do, it is in a humble manner. I feel that you have completely turned around a life-changing illness and turned it into a positive thing by dedicating a lot of your time and efforts to increasing awareness of MS.


How have you dealt with that?

I have dealt with this by reminding myself that what matters most are your friends and family...this is what is most important in life...helping your loved ones out in bad times and being there to make memories in the good times.


Do you think I have changed in any noticeable ways since being diagnosed with MS?

I think you have changed in that you seem to be more conscious of what you need and how to take care of yourself. Before you were diagnosed with MS, I feel that you put a lot of other people before yourself and i think that now this has enabled you to look at being just as good to yourself as you always have been to others in your life.

Thanks Cara. I appreciate you participating and sharing your thoughts and feelings with my blog readers!

Sunday, August 22, 2010

Camping on the Cape

Another fun weekend spent on the Cape except this time I wasn't staying in my parent's condo with all the comforts of home. . . this time I was "CAMPING!" I say "camping" because we were staying in cabins, had running water and food cooked for us so it is kind of fake camping but still fun none the less.

This is the 3rd time Taylor and I have participated in the AFC CAMPING TRIP. For those of you who don't know I'm a mentor and have been mentoring Taylor for just over three years now! I volunteer through an amazing, local organization called AFC Mentoring . The annual camping trip is one of the great perks we get to participate in along with Red Sox games and other fun group events. Taylor and I also do a lot of cool things on our own and have even made scrapbooks to document it!

Here we are in 2007 on our first camping trip just 2 months after we were "matched." Of course s'mores are a high point of every camping trip!

Here we are in 2008 wearing our tee shirts!

Here we are in 2010! Unfortunately Taylor and I weren't able to go last year due to scheduling conflicts. Oh and helpful hint - when taking a photo of yourself make sure you do not lean back like I'm doing making it look like I have no neck! Not the most flattering pic but Taylor liked it so I kept it for her! Haha.

On the first day we spent time at the lake. I think this is one of Taylor's favorite places at camp (besides the cafeteria). We had a great time canoeing and didn't fall in which was great.

We rowed all around the lake and were pretty fast. It was a beautiful day for being out on the lake.

Taylor did a lot of swimming. She is a fish! I didn't go into the lake - I know I'm no fun. I just can't deal with water that is cold and dirty. I'm such a girl!

We ended the day with what else but s'mores! Taylor and I both had good self control and ate 2 each. Oh and a few plain marshmallows too.

Today we did the climbing wall. It is such a fun challenge. I did it 2 years ago (pre MS diagnosis) and was able to get all the way to the top. This year I went 3/4 of the way up and then stopped. My arms were shaking and I just felt too weak. I'll blame it on my MS fatigue and lack of good sleep the night before. :)

Taylor tried the wall for the FIRST time this year and I am SO proud of her for trying. She was a little nervous because it is pretty high but she conquered her fear and did it. We were both climbing at the same time so I didn't get to see her but thankfully had a photographer! Good job Taylor!

Throughout the weekend we did a lot of team building exercises and fun games. Here is Taylor in the finals of the "wa" game. It is a crazy game that takes a lot of concentration and is a lot of fun to play.

We also did the low ropes course which was a lot of fun. It required a lot of trust and good communication. Our team did great. I was not a big fan of this spider web because we had to army crawl for part of it. Taylor did great.

It was such a fun weekend and so much cooler than in past years. We are so appreciative to AFC for making this all happen and to the camp staff for all their hard work. One really neat thing about the annual camping trip is that each year we see some old friends we've made and we make new ones! We hope to go again next year!

P.S. So the only not so fun about camp this year was BED BUGS!!!!!! This is my first experience with bed bugs and thankfully I didn't find any in my bed or stuff. But someone in our cabin did so to be safe we had to put all of our stuff (sleeping bag, pillow, clothes, etc) in a trash bag and the camp director put it in a high heat dryer to kill any that may be there. So our stuff is safe now and we should all be fine. The trash bags cracked me up so I had to take a pic. Should we place bets on how long it will take me to unpack that trash bag which is now sitting on my kitchen floor?


P.P.S If you are interested in becoming a mentor check out the AFC website for more info:
http://afcmentoring.org/requirements.html

Friday, August 20, 2010

My First Blog Award!!!

Today I received an email stating that my blog was selected as one of the Top 50 MS Blogs for 2010! I am so excited. When I started this blog I was hoping I would help others with MS so I feel honored to get an award from the Medical Assistant Schools. Check out my blog award on the right side of my blog!

Here is the link to see the other blogs in the Top 50:

http://www.medicalassistantschools.org/top_multiple_sclerosis/



Wednesday, August 18, 2010

COMING SOON. . . Oral Meds for MS!!!

As most of you know there are currently no oral meds for MS. Like many others I inject my medication which you can read more about here.

I am fortunate that Avonex has and still is working well for me after almost 2 years. So the big question will be - do I stop using something that is working and try oral meds? This will have to be something I think about and talk over with my doctor once these meds become available. While I don't want to mess with a good thing (the Avonex working) I would prefer to stop doing shots and just pop a pill. . . .

For those of you interesting in learning more about the oral meds I've borrowed this info from the National MS Society website:

FDA Gives Priority Review Status to Application for Oral Cladribine to Treat Relapsing Multiple Sclerosis


Jul 28, 2010

EMD Serono has announced that the U.S. Food and Drug Administration has accepted and given Priority Review to its application seeking approval to market cladribine as an oral disease-modifying therapy for relapsing forms of MS. A Priority Review means that the FDA will review the drug in less than the usual amount of time. This designation is given to drugs that offer major advances in treatment, or provide a treatment where no adequate therapy exists. The goal for completing a Priority Review is six months from when the application is submitted, meaning that the agency’s approval decision could happen in December 2010, but it might take longer.

In a large-scale phase 3 clinical trial, cladribine tablets significantly reduced relapse rates and other disease activity in people with relapsing-remitting MS. Read more about this study.

In November 2009, EMD Serono announced that it had received a “refuse to file” letter from the FDA for its original cladribine application submitted in late September, which usually means that the agency deems the application incomplete. On June 8, 2010, EMD Serono announced that it resubmitted its application to the FDA for approval of cladribine.

Another oral therapy for MS, fingolimod (Novartis International AG), is currently undergoing final review by the FDA after an FDA advisory committee recommended that it be approved. The agency’s approval decision for fingolimod is expected in September 2010.


For those of you with MS will you try oral meds when they come out?

Monday, August 16, 2010

The Many Faces of MS - A Father's Perspective

If you didn't read "The Many Faces of MS - A Mother's Perspective" go here first.

This week it is my dad's turn. Let me introduce you to Bob.


Bean

This will not be easy. Needless to say I did not really know anything about MS and I never really gave it any thoughts. I will always remember that day in the Doctor's office and him telling us that you had MS. Needless to say I was shocked and my first thoughts were that I would have preferred to have it be me instead of you. The hardest thing to live with regarding your MS is the not knowing what the future for you will bring. As a parent your mother and I have lived a good life and the last thing you want for one on your children is for them not to have a better life then what we have experienced Physically I do not see any changes in you; however, mentally I know that you have become a better and much stronger individual.

Love, Dad

Short and sweet! Thanks dad for sharing your thoughts with me and my blog readers!

Sunday, August 15, 2010

Another Cape Weekend With My Nieces

***WARNING
IF YOU DO NOT ENJOY LOOKING AT PICTURES OF ADORABLE LITTLE GIRLS YOU SHOULD STOP NOW. YOU'VE BEEN WARNED!!!!

On Saturday morning I picked up Peyton and Ella at their house and we headed to the Cape so that their mom and dad could have fun at a wedding and sleep in today!


After a day full of swimming in the pool and playing we decided to take a walk with Grammy on the beach.

Of course I was trying to capture a few (hundred) cute pictures!

Peyton made sand angels. . .

then the girls walked hand in hand along the ocean. . .
(this is my favorite picture - I love their footprints in the sand!) (oh and right after this pic Ella took a spill and got all wet - got thing she thought it was funny and laughed!)

and sat for another photo opportunity. . .

then after dinner we went to the "jumpolines" as Peyton likes to call them. . .

and we jumped. . .

and belly flopped. . .

and fell down. . . and laughed. . . and giggled. . .

and then rested on the bench. . .

then we looked at the pretty flowers before getting some ice cream. . .
(I bought the girls 2 new dresses and leggings for the fall but decided to try these on them since it was a cool night. I love them!)


and we ate sorbet and ice cream. . .

Ella really enjoyed hers. . .


Peyton ate her whole ice cream. . .


then we came home and put on new pj's. . .
(I couldn't resist)

and the next day after the playground we went back to the beach to play in the sand. . .

it was a little to cold for swimming but Peyton liked posing with the crabs. . .


and sat on the rocks. . .
(while nervous Grammy was freaking out!)

and of course Peyton wanted to walk on the rocks. . .

and so did Ella. . .


and finally before leaving the Cape a picture with their Great Grandmother, Ma. Ella was still being a little shy w/ the pout! Peyton was won over by Ma after Ma gave her some gummy candy. Haha!

Taking care of 2 little ones is exhausting! After swimming, running, bouncing, sliding and so much more it is time to go to bed early! It was all worth it - love these two.