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)

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)

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

Project 365: Week 28

Monday- Fireworks in Marietta

Tuesday- This is what Spoonies do when they're recovering from a weekend trip!

Wednesday- Morgan was fascinated by the carwash!

Thursday- I didn't actually take this photo, but a good friend of mine gave birth to baby #3 early Thursday morning!

Friday- baking brownies with the kids!

Saturday- dinner at my grandparents'. Nice evening.

Related articles

• My Spoonie Mantra (reflectionsbyrebekah.blogspot.com)
• fireworks (hollywithay.wordpress.com)

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)