Thankful Thursday 11/1/12

Just a hodgepodge of thankful thoughts today...

I am thankful that all we got from Sandy was a little wind and rain. My heart goes out to all those on the east coast.

I am thankful to live in a country where I am allowed to VOTE! My husband and I exercised our right to vote early on Monday.

I am thankful for a little pill called Relpax. It (most of the time) nips my migraines in the bud.

I am thankful my oldest daughter is learning to cook a few simple things. Tonight she is making soup and grilled cheese, and I get a break!

Thanks for stopping by. What are you thankful for today?

Update on One Little Word 2012: Health

I didn't follow through with my One Little Word album this year, but I have been reflecting this past week on what I have accomplished toward my goal of health. Some things were deliberate, and some just luck. What else can I do in these last few months of the year?

Physical health- Through some rough medical treatments, time, and a little luck, I am now in remission from Meniere's disease and Relapsing Polychondritis. I returned to work in December of last year. I have worked hard to lose over 50 pounds so far, and have been able to discontinue two of my medications. Good progress here!

Mental health- Feeling good physically has definitely helped my mental outlook as well. I can't think of anything I've really put into practice to help in this area. To do: re-establish weekly "Thankful Thursday" posts. This is such a great way to keep perspective.

Relationship health- I think I've done a great job here this year. My family and I took a long-anticipated vacation to Disney World this past spring, and we all had a great time! We made some great memories that will last for years to come. I (only partially willingly) took a new position at work, and I've worked for months to accept the realities of my new job. Some of the benefits are that I am able to establish a different sort of relationship with the families I support, and build new professional connections as well. My husband and I just celebrated our 12 year anniversary with a quick get-away. We considered various locations, but in the end we consciously spent our time at a secluded cabin. This trip was about US, not about doing stuff.

Financial health- I admit, the report is not so great here. Sure, we're paying all the bills and afforded a couple of vacations this year, but our savings is still stagnant. To do: make a plan to boost up that account a little- E-bay? Making and selling cards or crochet projects? Yard sale?

I have three more months to focus on health, and I'm looking forward to what I can accomplish. I hope that health continues to linger in my mind, as calm (my One Little Word from 2011) has thus far. A few ideas are percolating pertaining to next year's word, too! Some seem obvious to me, but one or two words caught me by surprise but are persistently creeping into my conscious- one of these words keeps popping up in my blog posts. Can you guess what it is?

Do you have a special word or quote that helps move you forward?

Then and Now

What a difference a year makes!

Last year about this time, I was sick. Really, really sick. Dizzy and in pain, on tons of steroids, unable to work. Felt terrible, looked terrible. Back then, I wrote about the Face of Prednisone, about how cruel life-saving drugs can be. I was on the medication from about May 2011 to April 2012. Here's what I looked like in November of last year:

 

Since I went back to work in December, I have been working hard to lose the steroid weight and get in shape. After losing about 20 pounds on my own, I got serious and joined Weight Watchers Online. I know it's not for everyone, but it has worked for me in the past, so I jumped on a sale they ran at the end of April. So far, 51 pounds gone! Here's me, this past weekend:

I am a work in progress. I still have a lot of weight to lose. Next up is adding regular exercise into my life. But I am feeling stronger and healthier every day. I can carry a load of laundry up the stairs without pain- I can take a walk at the park without being dizzy- I can drive myself to work- that's such a great feeling!

What a difference a year makes.

This post was inspired by The Bug's post about her own then/now.

Project 365: Week 7

Pretty standard week around here. I tried avoiding my usual pics (dance, cheerleading...) and kept perspective in mind. I think I did a fairly good job of adding some photos taken from different angles and distances, rather than all font-on shots.

Sunday- Finally getting around to doing our taxes. There's one task to cross off my February to-do list!

Monday- Can't start the week (or even day) without a cuppa!

Tuesday- You can't spell HEART without ART- the art teacher at school does face painting every Valentine's Day.

Wednesday- The 7am moon.

Thursday- M is ready for rain today.

Friday- This is my Meniett device, which I use 3 times a day to treat Meniere's Disease.

Saturday- Beautiful day for a walk in the park.

Visit this blog for other 365 participants.



One Little Word for 2012

Ali Edward's concept of One Little Word has totally changed the way I think about New Year's Resolutions. I don't make a list anymore, although I could... lose weight, save more money, blog more, plan a family vacation, go on more dates with my husband....

My word for 2011 was chosen from a short list that all had potential to guide me through the year. 2012's word practically screamed at me! 

My poor physical health this past year certainly had something to do with my choice, but as I really thought about this word, I realized it was perfect for so many more reasons, and it can have so many more meanings... physical, mental/spiritual, financial, relationships...

This past year I thought about my word a lot, blogged about it, and even took some action. But I wanted more. More ways to incorporate it into my life, more ways to document my journey with my word, and more accountability. So I am  taking a class (led by Ali) that will give me monthly prompts and assignments, plus a group of women who are also documenting their word for 2012.

I can't wait to create and share my One Little Word scrapbook! Do you have a special word for 2012?

Revisiting CALM

Lately I have been contemplating my “One Little Word” for 2012 and it occurred to me that it’s been a long while since I talked about CALM, this year’s word.

As many of you know, the past several months have brought me serious health problems and an inability to work. Stressful stuff on many levels. Besides being ill, I worried about finances and how my children were coping. Not really calm-inducing thoughts. Despite all this, I did find some ways to reduce stress and deal with life. Panic was kept to a minimum and we all made it. In the midst of all the uncertainty and fear, here is what helped me cultivate CALM as much as possible:

Do what you love. For me this meant reading and scrapbooking when I felt up to it. My sister set up a small scrapbooking area for me on the first floor of our house so I wouldn’t need to climb stairs to my craft room. Hubs took me to the library almost every week so I was always well-stocked with reading material. I spent a lot of time on Goodreads, looking for new books and authors.

Get it out. Writing and talking about things really helped me. I even had an article published concerning being a parent with a chronic illness.

Don’t isolate yourself. My health kept me from many normal activities, but I did manage a weekend with my college girlfriends, a brief visit with my coworkers, and a few family get-togethers.

Ask for help. This is not easy for many people, but being honest about my limitations and allowing people to help was one of the best moves I made during my illness. Child care, running errands, cleaning, and meal preparation were all things I couldn’t do by myself. I found that being specific about my needs gave me some control over my life but still allowed for people to help.

Seek out a support group. In addition to family and close friends, I belong to an on-line support group comprised of other individuals with my rare autoimmune disorder. Venting to people who have been there can be very cathartic!

Get professional help. When my daughters were struggling and worried that I might die, I was fairly clueless about how to help them. A few visits with a counselor gave me some good ideas and peace of mind. I found a way to balance the truth with reassurance.

CALM was definitely a challenge this year, and it wasn’t always possible. That’s ok.

“That which does not kill me makes me stronger”. -- Nietzsche

Around Here, November 2011

Hey readers! I decided to grace you with my presence once again, and fill you in on the goings-on around here.

Around here, I am slowly regaining my health. I had a small procedure done yesterday to accommodate my new Minette device, which will hopefully "cure" my dizzy spells and get me back to work!

Around here, electronics are dropping like flies! Laptop, camera, and flat screen- poof! Thankfully, Christmas is coming soon!

Around here, Morgan has finally found her niche. She is performing in Stone Soup this weekend, and has loved every minute of rehearsals. She even has a solo! One parent complimented us on her singing and acting skills, and asked us how long she has ben taking lessons... it really does my heart good to hear her praised by a stranger.

Around here, I still need to drag out my winter clothes. Can we say "denial"??

Around here, I am in Christmas card production mode. It's been 2 or 3 years since I've made them, and it's been nice having a large-ish project to occupy my time.

Around here, my house is a disaster! So I'm off to clean...be back soon!

Related articles

• Christmas Card round up! (moo.com)
• Best Colllection Of Christmas Email Templates Cards For Professional Business (eisgrup.wordpress.com)
• Around Here, August 2010 (ReflectionsByRebekah.blogspot.com)

Invisible Illness Awareness Meme: 30 Things

Last week marked "Invisible Illness Awareness" week. Here is my contribution to the information bloggers around the world have been sharing:

1. The illness I live with is: Relapsing Polychondritis, Meniere's Disease, fibromyalgia, IBS, Migraines, undiagnosed Central Nervous System disorder (tremors and muscle spasms)

2. I was diagnosed with it in the year: RP and Meniere's (2000); fibromyalgia and IBS (2009)

3. But I had symptoms since: Maybe childhood? I have had ear and sinus problems since I was very young. Obvious RP symptoms began mid-1999.


4. The biggest adjustment I’ve had to make is:  Not being able to participate in my children's activities as much as I would like. I try to make it a point to find fun, low-key things we can do together to make up for it.


5. Most people assume: I think some people assume that when you take a bunch of medications and go to the doctor frequently, that the only option is to get better. Unfortunately, not true. The symptoms of RP and Meniere's can perseverate, even with treatment.

6. The hardest part about mornings are: Not knowing how I will feel each day. Every day is a crap shoot, health-wise, regardless of any plans I have made.


7. My favorite medical TV show is: House! I find it fascinating.


9. The hardest part about nights is: Pain, racing thoughts, night sweats, and medication side effects often keep me from sleeping.

10. Each day I take __ pills and  vitamins: 12 pills; 7 vitamins and supplements (all doctor recommended); PRN prescriptions for pain, dizziness, and muscle spasms


11. Regarding alternative treatments: The only one I have tried is massage- I used to love it, but now find it painful. Cost prohibits me from trying other treatments.


12. If I had to choose between an invisible illness or visible I would choose: Neither! I don't see how one is "better" than the other.

13. Regarding working and career: I have had periods when I could not work. My doctor told me to stop working again last month. I am an educated and driven person, so this is so hard! And financial difficulties from not working just add to stress.


14. People would be surprised to know: Some days something as simple as taking a shower can totally wear me out.


15. The hardest thing to accept about my new reality has been: Being "forced" to quit working.


16. Something I never thought I could do with my illness that I did was: Get my Master's degree.


17. The commercials about my illness: Well, RP and Meniere's are very rare, so there aren't any commercials!

18. Something I really miss doing since I was diagnosed is: Going to my monthly scrapbook get-togethers. I usually don't have the stamina for a 6 hour crop, and transportation is an issue (see #19).


19. It was really hard to have to give up: Driving. I am dizzy most of the time, so this is not a safe activity! The loss of independence can be very depressing.


20. A new hobby I have taken up since my diagnosis is:  I wouldn't say I have any new hobbies- I have been a scrapbooker and blogger for a while now. But I certainly have more time to devote to them now!


21. If I could have one day of feeling normal again I would: Do something active- go camping with my family, take a hike, try Zumba.


22. My illness has taught me: Asking for help is ok, and not a sign of weakness.

23. Want to know a secret? One thing people say that gets under my skin is: "Just hang in there". Really? What do you think I'm doing?? I know people mean well and usually just don't know what to say, but...this one is really annoying to me, especially when a doctor says it!


24. But I love it when people: Just help me without me asking. I have a group of close friends and co-workers who regularly drop off meals, send me restaurant gift cards, or do other random things that really help.


25. My favorite motto, scripture, quote that gets me through tough times is: "That which does not kill me makes me stronger". I know I am going through this for a reason, and that somehow I am a better person for it.


26. When someone is diagnosed I’d like to tell them: Read everything you can, join a support group, and be prepared to advocate for yourself.


27. Something that has surprised me about living with an illness is: I have made new friends because of my illness, not just in spite of it.


28. The nicest thing someone did for me when I wasn’t feeling well was: Buy 2 air conditioners for me and my family during the worst of the summer heat. A cool house helped my fatigue and overall well-being!

29. I’m involved with Invisible Illness Week because: There is strength in numbers.


30. The fact that you read this list makes me feel: Empowered and hopeful.

Related articles

• invisible illness awareness week: Sept. 12 to 19 (phylor.wordpress.com)
• Living with Chronic Disease: My Mom was Chronically Ill (reflectionsbyrebekah.blogspot.com)
• 30 Things About My Invisible Illness: 2011. (sixuntilme.com)
• "30 Things About My Chronic Illness" Meme (dancemajorwitharthritis.wordpress.com)

Thankful Thursday 9/15/11

Having trouble maintaining my "gratitude attitude" lately. A little Thankful Thursday should fix that!

I am thankful for my wonderful little brother, who took me to a doctor's appointment and a couple of stores this past Tuesday.

I am thankful for co-workers who are still sending support in the form of sweet notes and gift cards.

I am thankful we worked out a way for my girls to be able to participate in their chosen fall activities- Drama for Morgan and Dance for Vivian.

I am thankful for two whole days without vomiting this week! (It's the little things, people! This medicine I'm on is almost as bad as the disease!)

I am thankful for the opportunity to be a guest blogger for the American Autoimmune Related Disease Association tomorrow. I wrote about parenting while having a chronic illness. I'd love for you to come check it out!

Living with Chronic Disease: My Mom was Chronically Ill

Me and Mom, Summer 1996, less than a year before she died.

I was in 5th grade when my mom was diagnosed with Rheumatoid Arthritis. A few years after that came lupus.  She was often in pain and had low stamina. As the oldest child of four, I picked up a lot of the slack at home.

Dishes, vacuuming, taking my younger siblings to their activities- I felt like I was constantly doing "mom stuff", and often felt resentful. And there were scarey times, too.

I remember being 16, calling my mom from a friend's house to see if I could stay out later. On the phone, she was out of breath and I could hear the pain in her voice. She told me she was lying on the couch and was in too much pain to get up. I raced home to help her, my night out ruined. We spent the evening at the ER; she had broken a rib by coughing.

There were sad times, too. The summer before I entered high school her health had deteriorated so badly that my siblings and I moved in with our dad because mom was moving to Florida so her mother could care for her.

1994, High School football game

There are so many more good memories, however... She attended each and every football game I performed at as a Drill Team dancer.  She stayed up late one night typing my poetry book assignment in Junior High. Baking dozens of Christmas cookies every year. Her teaching me to crochet. Hearing her play the organ at church. The wedding dress fashion show she organized for my Girl Scout troupe. Her absolute devotion to the TV show "Dallas", but no other soap opera. She wouldn't drink coffee, only Constant Comment tea; but she still bought me a coffee pot for Christmas when I was 16.

My mother was very ill for many years before she died, yet looking back, I don't remember feeling cheated or that she wasn't a part of my life. Did I have extra chores in order to help her? Yes, so do my kids. Did I often have to stay home when she didn't feel well enough to take me to the mall? Yes, so do my kids. Was I raised to be responsible, independent, caring, and empathetic, in part because of my mother's illnesses? Yes, and so are my kids. For I am chronically ill, too.

Related articles

• Explaining Rheumatoid Arthritis to Children (everydayhealth.com)
• Two Doctors, Two Diagnoses: RA or Lupus? (everydayhealth.com)
• Rheumatoid Arthritis: Starting a Family (everydayhealth.com)

Another Post About 9/11 (Talking to Your Kids About Death)

Source: http://www.coforse.com/?tag=world-trade-center

Ten years ago I was at work when the towers went down. We huddled around the television in the conference room, work all but forgotten. My doctor's office called to reschedule my appointment because the doctor was too upset and had gone home.

The 10th anniversary of the terrorist attacks have generated lots of news coverage, bringing the topic of death up and front and center around here. Even more personal, my deteriorating health condition has recently prompted my kids to ask if I'm dying. (For the record, my condition is serious, but I'm not planning on going anywhere for a while).

At any rate, professionals seem to agree that when death for a loved one is imminent, or your kids are just at that age where they start to ask about dying, the best thing to do is talk. Keep it age appropriate, use clear terms (no "going to sleep" or "God called them to Heaven"), and reassure them about the practical stuff. Let them ask questions, and admit when you don't have the answers.

The following websites have some great information to help you with your conversations.

http://www.parenting-ed.org/handout3/General%20Parenting%20Information/death.htm

http://www.hospicenet.org/html/parent.html

http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Emotional+Health/Talking+with+Children+and+Youth.aspx

http://www.helpstartshere.org/health-and-wellness/living-with-illness-tip-sheet-talking-with-children-about-a-parents-serious-illness.html

Related articles

• In post-9/11 America, no one is untouched (cnn.com)
• The New Grief: How Modern Medicine Has Transformed Death... (psychcentral.com)

Taking Time

It's been a week and a half since my doctor said, "no driving, no work". At that time he optimistically guessed at August 22nd (this coming Monday) as my return-to-work date. Just guessing. I knew in my heart that I wouldn't be ready. Really! I don't even start my new immuno-suppressive therapy until Tuesday! How was I supposed to recover in that amount of time?

So yesterday I calculated how much paid time off I have left, and called my boss. I told her, "Let's try for September 26th". I sighed; she sighed. I love my job and hate feeling like I'm leaving people high and dry, or like I'm abandoning the families I work with. I know it's not life or death, but I'm good at what I do and I provide a valuable service. (I work with kids with disabilities). After we hung up, I felt defeated and guilty.

But today I am feeling relief. I know I am not capable or working right now. I am dizzy, often nauseous, shaky, in pain, weak, and sometimes brain-fogged to the point of not being able to follow a conversation. With this longer time frame, my employer can make plans to change services for my kiddos. With this longer time frame, my meds will (hopefully) have time to start working and I can make the trip to Cleveland Clinic.

Taking time was the right decision. Even so, there is still ambiguity. There is a chance this new medicine won't work. We've already tried three different drugs in as many months. The chances are equally good that I could snap out of this flare within two weeks, or my condition will worsen and I may never work again. That's a big question mark, I know. But the question marks are part and parcel of having a rare, complicated, fluctuating disease.

For now, I need to use my time to relax, heal my body, and calm my mind. Taking time is good.

The Face of Prednisone- It Ain't Pretty
My Spoonie Mantra

The Face of Prednisone- It Ain't Pretty

When you have a chronic illness, sometimes the treatments are as bad as the disease itself. Take, for instance, my love/hate relationship with Prednisone, a steroid. When my autoimmune disease, Relapsing Polychondritis, flares up, one of the main drugs to treat the inflammation is Prednisone. In high doses. Side effects include hunger, night sweats, irritability (think roid rage), facial hair, weight gain, bloated abdomen and upper back/neck, elevated glucose levels, and moon face.

Ahh, moon face. People see your face first. And when it is puffed up on steroids, the change can be shocking.


This is what I looked like two months ago:

And now, after weeks of 60mg a day oral steroids and 3 1200mg IV infusions:

Like I said, shocking. People who haven't seen me in awhile stare. Sometimes they ask if I am pregnant. I had a verbal 2 1/2 year old client tell me I was getting fat. Sigh.

I know this will pass, but it's still a bitter pill to swallow. Be kind to moon faces!

Related articles

• Relief for Prednisone-Related Face Swelling (everydayhealth.com)
• Prednisone, A Blessing and A Curse (jenlynn401.wordpress.com)
• Mood Swings From Prednisone (everydayhealth.com)
• My Spoonie Mantra (reflectionsbyrebekah.blogspot.com)

Project 365: Week 31

Pretty boring week around here. Way too much time driving around for work and at the doctor's office/pharmacy.

Thankful Thursday 6/16/11

Some much needed perspective....

• I am thankful to be seeing my new rheumatologist today. He really seems to listen. So important.
• I am thankful that Vivian's dance recital is almost here. Just one more practice!
• I am thankful that I have had a little extra cash this week to treat myself to some beauty treatments- hair cut and color, eyebrow wax, and manicure. When you're chronically ill, a little pampering can go a long way!
• I am thankful for having three days off work this week. No explanation needed!
• I am thankful that my kids have been ultra cooperative in the mornings this week. No whining!
• I am thankful to have Facebook friends from all over the country to keep me company in the wee hours of the morning when I can't sleep!
• I am thankful for my new car and its awesome gas mileage!

I will continue to look for silver linings and small moments of gratitude. Will you?

Monday Morning Musings

So I've been awake since 3am. I finally got out of bed at about 3:30. Here's what's rattling around my brain this early Monday morning!

• Why am I up so early? Prednisone. Lots and lots of prednisone. Continuing my love/hate relationship with this stuff. Mood swings. Racing thoughts. Hunger. Hyperactivity. Irritability. I may feel a little sorry for myself, but I really feel worse for the people who are riding this roller coaster with me!
• Some anxiety about my busy week ahead. Three dance rehearsals, three doctor appointments, dance recital, work, reading camp, Father's Day cookout, and a promised trip to the amusement park. WHAT was I thinking??!!
• Thank goodness for Facebook. I have friends in enough different time zones, so there's always someone to talk to, no matter the hour.
• I'm a little afraid of raccoons. We have a family living in our garage, which we don't use much so that part doesn't really bother me. However, running into them in the dark at 4am is a little unsettling. (I was taking out the trash. Really, what does one DO at 4am??)
• Need to get on the ball with making Father's Day cards. I don't really have any "manly" stamps. Ideas??
• I need to color my hair (home job) and get a haircut. Which one goes first for best results?
• Coffee and brownies are awesome at 5am. Just sayin.
• Worried about my oldest daughter. Hubs and I are talking to a psychologist today about her. More on that later. Yep, I'll put it all out there. I only have about two blog readers, anyway!

I think that pretty much sums it up. I think it's a decent hour (now 5:30am) to start getting ready for work. I have so much time that I'm sure to look gorgeous today! Have a great one!

Project 365: Week 24

Sunday- Morgan is not too sure about my homemade BBQ sauce!

Monday- Picture night at dance. Three costume changes and 2 1/2 hours!

Tuesday- Very cute but unwelcome guest on our porch the past few days.

Wednesday- Learning how to play Boggle. We told her she was a little too young, but she found about 6 simple words on her own.

Thursday- my purple lilies have bloomed. Love the color on these!

Friday- Strange rash on both arms. Diagnosis? I am thinking reaction to steroids, or heat rash.

Saturday- Dressed up for date night with my hubs!

My Spoonie Mantra

First off, what's a Spoonie? You really need to read this to get the full meaning, but in a nutshell, a Spoonie is someone with a chronic illness, especially those people who may not look sick.  "Spoons" are the amount of energy each daily task requires to complete. Here is my personal experience with spoons...

• Each task can use up a different amount of spoons, depending on the day. For example, most days I can get out of bed, shower, and get dressed, then complete the rest of my day. No prob. But sometimes, standing in the shower and raising my arms to wash my hair completely wipes me out.
• Heat, humidity, and other environmental factors greatly influence the amount of spoons, or energy, I have on any given day.
• I make fewer promises than I used to...I may feel great when I agree to do something, but when the time comes to do it, I may feel like crap and have to break my promise. That sucks.
• Some medications can be deceiving. Right now I am on steroids to control my Relapsing Polychondritis. At just the right level, I feel AWESOME. Lots of energy!! I must constantly remind myself that this is a LIE. I do not feel great, the meds are just making me think I feel that way. If I over-do it while I'm "feeling great", I definitely pay for it later.
• I cannot save spoons for another day. I try, but it doesn't always work. Each day is unique.
• However, I do ration my spoons. If I know I have to go to the grocery on Wednesday, I may plan for an easier day on Tuesday and/or Thursday. Just in case.
• I feel guilty when I "waste" feel-good time by resting when I don't seem like I need it. This is stupid, I realize, because I always need it. So here's my new mantra:

I am a Spoonie. Today, I will willingly rest before fatigue and pain force me to do so. Today, I will accept my limitations and focus on the things I did accomplish. Today, I will leave beds unmade and dishes dirty. Today, I will take care of myself without guilt.

Related articles

• 4 Strategies for Saving Energy With Chronic Fatigue Syndrome (everydayhealth.com)
• Continuing to Work When You Have an Autoimmune Disorder (everydayhealth.com)
• Thankful Thursday 3/10/11 (reflectionsbyrebekah.blogspot.com)
• Thankful Thursday 3/31/11 (reflectionsbyrebekah.blogspot.com)

Project 365: Week 22

While it has been a busy week, as usual, I only took 35 pics this week.

I have a good excuse, both for that and for not blogging much lately. 

Unfortunately, my health problems have resurfaced, and I am having a flare of my Relapsing Polychondritis. While everything is manageable right now, I am more tired than usual, and have been advised by my doctors to take it easy. Less work, less stress, more rest. I have an uneasy feeling about this flare, so I am being the best patient I possibly can and abiding by their advice, more so than I usually do! So forgive me over the next few weeks as I post less and visit your blogs less!

Sunday- saw a gorgeous double rainbow in Columbus. The big one on the bottom actually made a full arch!

Monday- This is a section of a traveling mural made by people with disabilities, as part of the 20th anniversary of the Americans with Disabilities Act.

Wednesday- Second dance practice of the week. We are gearing up for the recital!

Friday- Met a coworker for lunch at Panera.

Saturday- Morgan actually kicked the ball at today's game!

Post- It Note Tuesday, 5/10/11

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