Hair Today, Gone Tomorrow

I've had a bad hair day for about five years now, or has it been more like ten?  Regardless of how long, the fact of the matter is that my hair is noticeably thinner and I'm not liking it.

Lupus requires my taking a cocktail of medications that include Methotrexate, Plaquenil along with  Prednisone and cortisone injections on and off for as long as I can remember.  Those combined with the reality that I'm in full blown menopause and my stress level has been through the roof with the sad passing of my step-father 4 months ago, and, well,  it's clear my hair is paying the price.

For the record, I'm 53 years old with dark brown hair but do not color my hair yet--  Because I only have 17 gray hairs, and yes, I've counted them.  Despite my older and younger sisters all requiring the assistance of Miss Clairol, I'm still far from the monthly hair color ritual (knock wood).  So, that's not contributing in any way to my hair falling out.  Phew.

It is my understanding that on average a person loses 50-100 hairs per day.  I'm waaaay past that level so my Rheumatologist and I discussed the state of affairs--  Overall, my lupus symptoms (fatigue, joint swelling, shortness of breath) are cutting me a break in the past several weeks except for the alarming amount of hair on my pillow, in the sink and on my brush.  I prefer not to rock the boat by changing any of my meds so a more natural approach was my chief topic of conversation.

Biotin, specifically Vitamin B7, was the suggestion.  I stopped at the pharmacy on my way home and asked the Pharmacist which brand was best and of course he recommended the store's brand.  I bought a bottle and started taking one small table a day.

Three weeks later I can't say I actually see a difference in my hair.... yet-- But I'm hoping I will.  I have, however, seen a significant improvement in my finger nails-- They're growing like crazy and are stronger too.

Have you had any luck with more natural options for hair loss related to your lupus or other auto-immune disease?

Until next time...

Joanna J. aka Lemon-Aid

Photo Credit: © .shock - Fotolia.com

Acceptance

This time of year is a tough one for me.  Thanksgiving is my all time favorite holiday and in my past life (translation: before being diagnosed with lupus and everything that goes with it) it was filled with recipe planning, list making, grocery and Farmer's Market shopping, baking, slicing, dicing, basting, simmering, roasting and cooking, cooking, cooking.  I loved it!

All that changed in 2004.

I was ten years into my diagnosis and, despite some major health ups and downs over the years, had always managed to dodge being sick during Thanksgiving.  I'm a big foodie and got great pleasure out of preparing a huge traditional dinner with all the trimmings for my husband's very large family-- usually more than 30 people.  Nothing made me happier than to see his smiling face at the end of the dining room table surrounded by all of his loved ones.

That Fall had been a rough couple of months filled with extreme fatigue-- the hit-the-wall-crash-and-burn kind of tired, along with significant pain in my joints that left my hands and legs weak and sore, and a few other sinister ailments rearing their ugly heads.  

My rheumatologist had just given me his best "skip the holiday cooking" speech trying to convince me to put myself first-- (I despised that speech) and as I drove to meet my husband for lunch I cried all the way.  I had 32 people coming for dinner in 9 days and I didn't know how I was going to make it all happen.

And then Frosty The Snowman started playing on the car stereo and that pushed me over the top.  I had to pull the car over to the curb and cursed to high heaven, crying and slobbering the whole time.  It's a silly, harmless holiday song but man-oh-man, I was a crazy woman.  I had no idea how I was going to manage Thanksgiving and here some bozo radio station was already playing Christmas caroles.

Truth be told, I'm sure the massive dose of Prednisone I was on at the time helped jack up my drama, (or at least I'd like to blame it on that) but I was a wreck.  Eventually I sucked it up, applied a massive amount of make-up to cover my red nose, put on a happy face, and headed over to our favorite coffee shop to meet Husband.

The minute he saw me the look on Husband's face was proof I wasn't fooling anyone.

We've been eating at this family owned coffee shop for years and know the owners and staff well.  My husband and I huddled at a corner table holding hands as I once again cried-- The staff instinctively knew to just leave us alone for a while.  After about 15 minutes, I vaguely remember the owner slipping a stack of napkins on the corner of the table as I was clearly out of Kleenex.

Finally my waterworks stopped long enough for Husband and I to have a meaningful conversation about how to feed our gaggle of family on Thanksgiving.  The thought of a supermarket prepared turkey dinner reduced me to sobs again.  The idea left me completely defeated.

Then over my shoulder I heard the magic words...  "Do you want us to make your Thanksgiving dinner?"

Paul, the owner of the coffee shop, which by the way, is only open for breakfast and lunch, was offering to not only make us a huge dinner, he was also offering the entire restaurant to our family.  He would rearrange the dining room so we'd have one big family table and serve all the food family style so people could eat as much of whatever they wanted-- just like at home.

Did I mention it is very rare for my husband and I to meet on a work day for lunch?  I have no memory of why we had arranged it that day after my doctor's appointment, but there we were.

The thought of Paul's generosity and kindness makes me cry again just thinking of it-- And honestly, I'm not a big crier, despite all the crying mentioned in this post.  He truly saved me and our Thanksgiving.

I've never cooked a full Thanksgiving dinner since.  Each year, we're back to the coffee shop for Thanksgiving and our family loves it-- The turkey is delicious and moist, there are two kinds of stuffing and potatoes, a river of gravy, multiple vegetables and on and on...  The food is all "homemade" and lovingly prepared.

That Thanksgiving was a significant turning point for me.  To some degree I "surrendered" and finally accepted my health limitations realizing I didn't have to be Wonder Woman" all the time.  It was a hard one to swallow, but ten years after my diagnosis I'd finally learned to actually respect the illness and that there are times I have no control over it.... No matter how hard I may try.

This time of year I am reminded of the true meaning of Thanksgiving and in many respects I owe it to Paul and his coffee shop.  I am thankful for the kindness and generosity of people around me and for the understanding I receive when my health limits my participation in life.  I am thankful for my doctors and the medical community and their quest to keep me well.  I am thankful for my husband who never once has complained about the limitations my illness can sometimes place on me and I am thankful for my family.

This year may you all be blessed with good health, great family and friends and lots of leftovers to enjoy!

Until next time...

Joanna J. aka Lemon-Aid

Photo Credit: © GeraKTV - Fotolia.com

Back-up...

Living in Southern California means being prepared for earthquakes.  I learned that lesson the hard way when we got hit, big-time, in 1994 with a whopping 6.9 quake that left me more than shaken.  In short, I was not prepared and that was the last time I'll ever let that happen again.

To say I've purchased an abduance of emergency supplies is an understatement.  I have copious amounts of water, *nasty* dehydrated food, clothing, blankets, candles, batteries, blah, blah, blah-- all the usual stuff one would need should you lose power, clean water or god forbid, your home for a short period of time.  It's kept in our garage and in a storage area in the back yard.

Honestly, my family and friends think I'm a bit over the top *borderline hysterical* with my "natural disaster supplies" but I remember vividly in 1994 that ours was the house they all showed up to after that earthquake and my supplies were limited to what I had on hand-- which wasn't much!  So I'm prepared-- for one and all.

By the way, it was the 1994 earthquake that rattled my nerves and health so badly that I had a gigantic flare up and was finally diagnosed with lupus.  It was a scary time and I ended up sick as a dog.

Call me slow, but it just dawned on me to gather an extra stash of meds for an "emergency", because  the ramifications of missing doses in a time of crisis is the last thing I'd want to happen.  I bit the bullet and paid for them myself since insurance wouldn't cover "emergency supplies".  Ouch.

But now, I'm not sure what to do with them.

If we're hit with an emergency of some sort, what happens if I can't get to the bathroom my supply is stored in.  I can't keep them in the car-- Los Angeles heat would surely melt them, and outdoors with heat and mositure isn't a safe place either.  I'm kind of at a loss...

So since all parts of the country have "emergencies", my questions is-- Do you have an back-up medication supply and if so, where do you keep it?

Thanks for your input.  I really appreciate it.

Until next time...

Joanna J. aka Lemon-Aid

Photo Credit: © flucas - Fotolia.com

Helping A Friend

A friend, with RA and recently diagnosed with a complicated muscular autoimmune disorder, called me in a panic yesterday because she was just prescribed Methotrexate.  When the doctor explained the medication to her, all she heard were the words "a chemo therapy drug" and she freaked out.

About 16 years ago when I was first prescribed this somewhat scary medication I freaked out too-- Big time.  I'm not talking a little freaked, I was over the top freaked.  At that time I actually had to sign a 12 page legal disclaimer from my doctor to even get the drug and that scared the daylights out of me! 

That was pre-Internet and researching the medication on my own brought detailed medical explanations with little in layman's terms for me to understand.  So I talked to the folks at Lupus International* who brought me together with patients actually taking the drug.  These kind people talked me through, based on their experience, what I could expect and helped me feel better about my decision to start the treatment.

But that was a long time ago and frankly I can't remember much about my original side effects other than I know, without a doubt, my stress level over the legal disclaimer requirement and what side effects might/could/perhaps/possibly happen, pushed me over the edge.  

In the beginning, each weekly dose of Methotrexate brought me far more stress than was actually necessary.  Call me a drama queen but I imagined the worst possible scenario every time I swallowed my little yellow pills.  The anxiety surrounding my medication day made me literally sick to my stomach even though my body was responding positively to the treatment.   Not smart and eventually I figured that out.

Now I've been on the Methotrexate for so long, probably a combined ten of the last sixteen years or so and I find it to be a very useful drug in managing my lupus.  But I can't really give good advice to my newly diagnosed friend as to what to expect as she ramps up her dosage and starts on this journey.

Do you have any experience with Methotrexate that you would share please?

Thanks for your help.  Until next time...

Joanna J. aka Lemon-Aid

Click here for more on Methotrexate

Photo Credit: © Scanrail - Fotolia.com

*Under a different name at the time

Pushing My Luck

That is so not me.  I don't find moving that much fun.

Traveling, especially by commercial airlines, usually spells trouble for me.  It seems no matter how hard I try or how careful I am, a gigantic cold (or worse) is usually my vacation souvenir.  As a lupus patient, my immune system is often less than glowing and my recent travels reminded me of that fact.

In the last four months, I've made five round-trips between Los Angeles and Ohio to spend time with my family.  My sweet step-father recently passed away and Mom just moved from their large home into a senior living community, so I've been back home pitching in and helping with all the things you'd expect that comes with the events of the past few months.

This time though, my usual semi-below average energy level kicked into high gear and I was able to go non-stop, day and night, on every trip.  Perhaps it was a sort of "crisis management" mode or maybe all the adrenaline from losing my dad and trying to make Mom's move as smooth as possible, or perhaps I was just plain lucky on my first four trips.  But on trip number five, I came home with a miserable chest cold and am fighting to make sure it doesn't get any worse.

Why I was able to go all out before I crashed with this cold remains a mystery.  My sisters were amazed, and frankly I was too, that I was able to do so much physical labor on so little sleep during a very stressful time.  I did a ton of work-- packing, schlepping, hauling and running around without so much as a Prednisone booster shot.

I've learned over the years not to question these rare bursts of energy.  I'll take 'em when I can get 'em and greatly appreciate 'em while they last.  There seems to be no rhyme or reason as to when or why they appear and disappear at random but I sure wish I knew how to trigger those "Energizer Bunny" activities on command.

This cold is kicking my butt and yes, my joints are beyond sore and swollen from all the heavy lifting, stair climbing and the likes from packing back in Ohio, but we got the job done for Mom and that makes my current health state worth the trade-off.

I do not like that phrase-- "Trade-off--" but it's my reality.  Deciding between how much I do versus how I will feel as a result is a slippery slope sometimes.  I make smart choices regularly on how best to use what energy I have, but at times like this, my "smart" choices are a little more clouded with what I feel I need to do versus what I really should do.  This time around I'm grateful I had the energy when I needed it making this cold a small price to pay.

Do you juggle your energy and how's that working for you?

Until next time...

Joanna J. aka Lemon-Aid

Photo Credit: Msaario Beauregard - Fotolia #22061180

On A Mission

These are my friends BB and Rosebud-- They are cousins, best friends and two determined nine year olds on a mission.

Despite a very serious kidney disease of her own, Rosebud (pictured on the right) fund-raises all year long for lupus because her mom has the nasty disease. With BB by her side every step of the way, you'd be blown away by the amount of support and money these two dynamos raise... All of this while Rosie is fighting to keep her kidneys functioning.

This week the girls are having a huge bake sale and then on Sunday they are running in the 5K Lupus International Race For Life. Here's what Rosie says about it in their own words...

Why I run …


I run the Lupus Race for Life to help people who are sick, like me. I have HSP IgA Nephropathy. It’s not fair to have people feel the same way I do. People with lupus go through some of the same problems as me.


Running this race makes people feel good inside—those who are sick and those to can run. It’s because we all come together to make a difference. Even if you are sick like me, you can still make a difference. Like George Lopez does for kids with kidney problems at the Painted Turtle Camp. I got to meet him this year—he was really nice and funny too!


So here I am. Trying to make a difference.


I don’t feel good when my mommy is sick. It makes me sad. I am the only one with kidney problems in my family.


I help people who I don’t know, but I am helping the most important person—my mommy who has lupus. What’s better than a daughter and mommy relationship?


My favorite hobbies are running, surfing, pitching and relaxing. I run every year. That means I am helping myself and people with lupus feel good.


I won first place when I was four years old for the 1 mile. It was hard, but fun. Even if you just take a step at least you try. I just really want you to try. Last year I came in last, but I finished. I didn’t give up.


All you have to do is participate—run, walk and/or give. So why not? Plus, after the race, you can get breakfast. They serve pancakes, sausage, eggs, tortillas and fruit.


Will you run the race with me and help people with lupus?


You will feel good about yourself!


xo Rosebud

I adore these girls and I myself have lupus so I especially appreciate their efforts. Please help me cheer them on this Sunday October 2nd. Make a pledge, say a little prayer or read more to understand lupus.

Thanks a million.

www.LupusInternational.com

Until next time...

Joanna J.  aka Lemon-Aid

Former Sun Worshiper

I used to be a sun worshiper floating around on a raft in the swimming pool for hours at a time perfecting my tan.  Oh yes I did!  That was back in my teens and well into my 20s *ahem*the*1970s*and*80s*.  I sort of knew better but a tan was a tan and I wanted one.

In my early 30s, each year, I spent the week between Christmas and New Years relaxing on the beach in Maui-- soaking up the rays and sleeping 20 out of 24 hours, waking only long enough to eat meals and rollover when my then boyfriend, now husband, would nudge me.  I wasn't sure why I was so exhausted all the time but I assumed vacations were for resting and didn't give it a second thought.

Then I was diagnosed with lupus and the you know what hit the fan.  No more sun and no more suntan for this girl-- Well almost.  First I spent a few years in denial and continued to tempt fate by spending way to much time in the sun-- my skin unprotected.

The sun's UVA and UVB rays can kick-start auto-immune responses in people with lupus causing a butterfly-shaped rash across the nose and cheeks or trigger lupus flairs including joint pain and fatigue.  Of course, being the smarty pants that I was, I ignored the importance of good sun sense and continued to tan.... until I got that nasty rash.  Then, I learned my lesson big time and have the remaining facial discoloration to prove it.

The first time I got slammed with the rash was after a week-long gardening project in the glorious California sun.  The red rash across my face was definitely lupus related and there was little I could do at the time but ride it out and reverse the err of my ways in the future.  The remaining results of my foolishness are half inch wide, half moon shaped, brown patches on my cheeks that some 15 years later are still present.

I see a cosmetic dermatologist on a regular basis to try to diminish the brown spots but typical "laser peels" aren't an option because of my lupus.  Bleaching creams have helped somewhat but still, the brown patches remain.

Today, I follow my doc's orders and slather myself in sunscreen-- He actually recommends the cost-effective, over the counter, Neutrogena SPF 85 which, if I let it absorb for a full 15 minutes, doesn't leave me feeling like a giant grease ball.  My second choice is the more expensive Lancome's Bienfait UV SPF 50+ for the face which is fabulous under make-up.

And I put sunscreen on usually twice a day-- On my face, neck and arms-- any area that's not covered and could see the light of day.  I generally always wear long sleeves and pants or skirts but I'm mindful that when I pull my sleeves up, even when I'm driving, the sun can get to me so I either pull the sleeves back down or apply more sunscreen.

Then there's the gigantic hat collection--  The brims on my hats-- not the actual number of hats.  They're all the size of a circus tent.  Seriously, you could spot me a mile away wearing one, but I'm bound and determined to never get a sun induced rash again or expose my brown patches to the harmful rays-- because the sun will make them darker and who wants that!

As I type this post, I'm sitting at a lovely resort in Palm Springs, California.  It's a blazing 108 degrees out.  Covered in sunscreen, wrapped in a towel, and wearing long yoga pants and a long-sleeved cotton blouse, my hat helps protects me from any possible glimpse of sun that might peak through the shade tree I'm under. 

The pool waiter has brought me about three gallons of ice water today to help me stay cool and more than a few people have given me funny looks.  I'm used to it.  This is not my first rodeo-- and not my first time in the desert-- or a beach-- sporting event-- outdoor flea market-- farmer's market-- or county fair for that matter.  I love being outside in the sun.  Sure being covered from head to toe is H.O.T. (and a little odd looking) but hiding inside and missing all of the fun is, well, not fun at all.

Have you had problems with the sun in dealing with your lupus?

Click HERE for sun protection info from Lupus International.com

Until next time...

Cheers, Joanna J. aka Lemon-Aid
photo credit: © Julydfg - Fotolia.com

Invisible Illness Week

Generating awareness for "invisible illnesses"-- you know, the less known,less sexy ones, including lupus and it's related diseases, is a topic of conversation in Blogland this week.  Hosted by Lisa at Invisible Wellness here's my offering to raise awareness of my "invisible disease"...


1. The illness I live with is: Systemic Lupus 


2. I was diagnosed with it in the year: 1994 right after the big Northridge, CA earthquake that threw me into such a huge flair up it was (finally) easy to diagnose.


3. But I had symptoms since: Probably high school


4. The biggest adjustment I’ve had to make is: Learning how to respect the illness. It's not as easy as it sounds.


5. Most people assume: I am far more fragile than I am which just goes to show assumptions aren't all they're cracked up to be.  


6. The hardest part about mornings are: Trying not to throw the alarm clock across the room and my very stiff ankles


7. My favorite medical TV show is: Does "General Hospital" count?


8. A gadget I couldn’t live without is: Sadly, my iPhone but my electric toothbrush is a close second.  It's way easier to use when my hands are sore than a manual one.


9. The hardest part about nights are:  Climate change!  The meds sometimes make me really hot or really cold.


10. Each day I take between 10 and 19 pills & vitamins.


11. Regarding alternative treatments I've:  Tried several and found yoga and breathing meditation to be the most helpful.  Most of the others for me were a waste of time and money.


12. If I had to choose between an invisible illness or visible I would choose:  I'm totally vain.  I'd definitely take the "look good feel bad" kind but I sure wish more people knew about the disease and could get diagnosed sooner.  


13. Regarding working and career:  I was very lucky and worked successfully from home for 15 years... mostly in my pajamas.


14. People would be surprised to know: How much I miss being out in the sun.  It's hard being covered from head to toe with a hat the size of a circus tent when I'm outside, especially on a hot day.


15. The hardest thing to accept about my new reality has been: Prednisone is a huge help but, i yiyi what it does to my weight.


16. Something I never thought I could do with my illness that I did was:  Blog about it.  I didn't talk about my lupus for a very long time.  I was afraid it would have a negative impact on the career.


17. The commercials about my illness:  Are few and far between.  There is no "big money" drug to advertise so there aren't many TV commercials for lupus.  


18. Something I really miss doing since I was diagnosed is:  Spontaneously doing things-- like opening a jar or better yet, picking up a baby.  Some days the pain makes that nearly impossible.


19. It was really hard to have to give up:  The idea that I could work full time in "Corporate America" with traditional "9am - 5pm" job responsibilities. 


20. A new hobby I have taken up since my diagnosis is:  Yoga.  Before lupus, I'd have never given it a second thought-- Who knew!


21. If I could have one day of feeling normal again I would:  Wake up early, take a ballet class, meet loved ones for lunch, go to the park and hang upside down from the monkey bars with the kids then still have energy to make a great dinner and go out dancing with my husband..... without paying the price for doing all of that the next day.  


22. My illness has taught me: Grace


23. Want to know a secret? One thing people say that gets under my skin is:  "You look so tired." on the rare occasion I'm actually not!


24. But I love it when people:  Make me laugh out loud 


25. My favorite motto, scripture, quote that gets me through tough times is:  "When what you're doing isn't working, try something different."  Wyatt Webb  Simple, right?  But that took me a long time to learn, especially when dealing with my doctors.


26. When someone is diagnosed I’d like to tell them:  "Call me, we'll talk."


27. Something that has surprised me about living with an illness is:  I've learned to appreciate the small stuff that I never seemed to notice before.


28. The nicest thing someone did for me when I wasn’t feeling well was:  An acquaintance arrived at my home unexpectedly and brought all the ingredients for homemade chicken soup.  I was pretty sick at the time and she kept me company while I napped and the soup simmered on the stove all day. 


29. I’m involved with Invisible Illness Week because:  I know so many people with autoimmune diseases and we need all the help, support and awareness we can get!


30. The fact that you read this list makes me feel:  Pretty darn happy!  Thank you.


Until next time...
Cheers, Joanna J. aka Lemon-Aid


Photo Credit: © 89studio - Fotolia.com #25094176 

Let's Get Started

To blog or not to blog, that is the question.  Actually it goes a little deeper than that.


I was 35 years old and a just-married advertising executive when I was first diagnosed with lupus.  It was 1994 and honestly, the only other time I'd even heard of the disease was when a co-worker died of complications from it.


I was scared out of my mind!


Since it was pre-Internet *cough*that*makes*me*sound*ahem*really*old*cough*, I limped to the book store and found a few less than promising and outdated books to read. They talked in terms of "5 year life expectancies" that left me feeling hopeless and lost.  I had no idea where to turn for information, advice or help in dealing with what had been a very long and difficult illness to diagnose.


My Rheumatologist was terrific and informative but unable to soothe my fears or address my then Type-A workaholic personality that was running on empty, so he turned me onto Lupus International (then called a different name) for support and the rest, as they say, is history.


Which brings me to this new blog.  As a Lupus International volunteer, I'll be blogging about life with lupus and the winding road to wellness that I've been on.  I hope to get to know you and vice-a-versa as we share our experiences, a few laughs, maybe some tears and the latest news about lupus and related diseases.


Thanks for stopping by,  Please leave me a comment and I'll stop by and say hello to you too.


Until then...
Cheers, Joanna J. aka Lemon-Aid
Photo Credit: © yellowj - Fotolia.com #26348539