Walk for Lupus Now – April 25, 2009

I will be walking in the 2009 Walk for Lupus Now on April 25, 2009 to raise funds for the Lupus Foundation of America, Georgia Chapter. My personal goal is to raise $500 to help the thousands of families affected by Lupus and to help the chapter expand the valuable programs for the 55,000 Georgians with lupus. Will you support my commitment and help me reach my personal fundraising goal?

Life is a series of events that we can use to either build us up or break us down. I, for the most part, have felt that I have benefited from both the triumphs and the adversities in my life. Although I lost my mother at a very young age, I took pride of the fact that I had the ability to overcome many of life’s obstacles. You see, I have always viewed my glass of life half full and never half empty.
Initially, Lupus was one of those “obstacles” that I scoffed. I was able to hide my struggles for years. However, as of late, Lupus has been the one thing that has forced me to swallow my pride. Although I have grown plenty because of this disease, I have also lost some of myself. It has interfered with my ability to enjoy the outdoors; it has affected my sense of well-being, my interactions with those I love and sometimes even my confidence.

Although it is hard for me to ask for help personally, it is not hard for me to ask for help on behalf of my family or a wonderful organization like the Lupus Foundation of America. Did you know that it has been fifty years since the FDA has approved a new drug to treat Lupus? As a matter of fact, many of the drugs used to treat the disease are drugs that were intended to treat other disorders and diseases (i.e. cancer drugs, steroids, anti-depressants, etc.). These drugs often lead to devastating side effects. My course of medicine and supplements continues to increase. I am now taking 15 to 20 pills each day and well over 100 injections each year. The realization of side effects such as permanent joint damage, heart disease, internal bleeding and muscle degeneration are inevitable without a cure. What’s amazing is that I do not have it as bad as some others.

Please visit my personal webpage by clicking on the "Follow This Link" at the bottom of this page and donate to my efforts. Use a credit card on the secured website to receive an emailed tax receipt, you can also send a check payable to the Lupus Foundation of America to my home address.
90% of every dollar donated funds the Chapter’s programs, the only statewide valuable resources to help thousands of people with support and information, physician referrals, public and professional education and grass-roots advocacy on the state and federal level. Our passionate, volunteer leaders are committed to expanding these programs, e.g. the free, semi-annual “Living with Lupus” educational seminars, new support groups including Teen and Hispanic Support groups and a Lupus Awareness Day at the GA state capital on Wednesday, February 18th!
Thank you so much for your support! Remember no gift is too small! I will keep you updated as I reach my goal, and please feel free to forward my request to anyone you feel would support me and/or my team in the Walk for Lupus Now! Together, we can create hope and awareness, advocate for increased support, find a cause and a cure and improve the lives of all those living with lupus.

Follow This Link to visit my personal web page and help me in my efforts to support Lupus Foundation of America – Georgia Chapter
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Jowanna Daley

On the Road Again

The past several months have been quite challenging. I could no longer ignore my flares … they became rather frightening.  This “thing” exposed my deepest vulnerabilities. However, by opening up, I was able to see that I had the mother I needed and it also made me more confident in my decisions.

There is a lot that I should have shared. It was just overwhelming. I still battle with the “Lupus” tag. I am so much more than this disease, yet I know that I have the ability to inspire others.  I have had to come to face my Pride.  I have tried to change some prideful behavior, but I am not ready to let go of all … I sometimes wonder if I should completely let go. I don’t know … maybe the combination of my pride and humility makes me balance.

I will figure out this balance — I just need to give this Lupus thing a break. I need to concentrate on other parts of me for a while. I hope to continue writing entries with more frequency. I think it’s time to focus a little more on my professional aspirations. We’ll see…

I’ll continue to take it as it comes.

My Rose Petals

I have been stubbornly acknowledging my life with Lupus over the past year or so. While I have had this disorder for years – I am still stubborn and partly in denial. However, I have been working on letting my family and friends become part of this monogamous relationship I share with my disease.  Last night I came across a site that has made it possible to explain what I go through to my loved ones what living with Lupus is all about (I have added the link below). This one is a little emotional for me because it is a bittersweet breakthrough.

I give Christine; author of The Spoon Theory, all the credit for my analogy for it would not have existed without hers. In her article she is finally able to get her best friend a sense of what everyday is with Lupus. Since I love flowers, I will use them to draw an analogy that those who know me can relate to.

Like Christine’s Spoon Theory, my roses represent the things I do each day. I enjoy doing things for people, learning, playing tennis, being around the people I love, meeting people, and my profession (to name a few). I was a person with plenty of roses. Each day I would give away plenty of my roses and sometimes keep one for myself every now and again. It really didn’t matter, because I had a garden full of roses. So between writing business plans, keeping the kids a grade a head, having long chats with my children, going to school, doing things for my husband, chipping in behind the scenes at work, opening my door to those that needed a place to sleep, being a cheerleader to others, being a post for others to lean on and even being the horse they can ride.

Flowers were plentiful! I did not mind handing them out because there was always one for me that I took only if I needed it – even if I did not have one for myself because I could always plant more. Over the years my beautiful flower garden has dwindled. I didn’t even realize it dwindled to just one single rose. However, sometime last year (or maybe even the year before), I looked at my husband and said “I want me back.” Instead of being the socialite that knew everyone, my introverted husband was forced to be the one that interacted with teachers, neighbors, friends and associates.

I started hating to be around people because I did not want to have to explain myself to people. I dreaded meeting new people because I did not have the energy to maintain a new relationship. I stopped playing on tennis leagues, because I grew tiresome of having to explain why playing in the sun was not good for me or that it cost me my entire day because I could not do anything else for the remainder of the day (and sometimes week).  I dreaded going to some of the events I once loved. Slowly but surely my plentiful garden became scarce.  When I would have just a handful, I would excitedly give them away, forgetting that I did not have a beautiful garden anymore. I would then be left with the inability to give something to anyone and certainly not myself. Today I have one rose, with petals missing. My goal is to build back up a garden. Maybe not as beautiful, but enough where I can at least do one thing everyday that brings me joy.

Please take the time to read the wonderful article that I referenced below. 

(http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf)

The Face of Devastation

I have not blogged in a few days because keeping a Lupus Diary sounds like complaining. That has been one of my issues with coming to terms with keeping a diary. Although it allows me to reflect back to share my progress with my doctor and to maybe connect with other people that suffers with a chronic disease (or know someone that does), it’s still not comfortable for me.

Today I was complaining to my husband because for the past week I have been dealing with a mouth sore and earache courtesy of the disease. I also had to go to the doctor the day before to have blood work redone because my electrolytes were off. Given my Mom died because of fasting and not drinking water, it alarmed me. Needless to say, I have not been in the best of moods.

I am now sitting here watching Oprah. She is interviewing a family that was involved in a terrible car crash that took the life of the limo driver and a little girl in the limo. The next time I am frustrated and complaining – I will remember what real devastation is. Devastation is a mother holding her daughter’s decapitated head on the side of the road moments after a head-on collision with a drunk driver.

Mountain or a Mole Hill

Good lord I look back at my recent posting and I just want to delete it. However, I am going to commit to keeping a journal of the highs and lows of this disease. It is the hardest thing for me because I am way more than this.

I have had a trying time lately. The hardest thing is to feel myself slowing down and to recognize my mood swings … or even learn more about myself – like the fact that I never knew I was so controlling. No I don’t try to control others … I just like to have control of myself. I always promise myself as a child that when I was an adult I would choose to be happy and ensure that I work hard to fulfill my dream.

The truth is I am absolutely neurotic and dysfunctional. My dysfunction manifests itself in a way that has helped me succeed and reach milestones that had once seemed impossible. I look to progress on my goals each day as I look back in my day I always take an inventory on the deed(s) I have done to get me closer to one of my goals.

I am beginning to think it is an obsession. Because now I go bananas if I come home and take a 4 hour nap after work and follow-it up with going to bed early. It is important to laugh at ourselves … believe me I crack myself up!

Lupus Gage

Pain – about 6

Fatigue – 5

Mood – steady

Facing Reality

I am home sick this week from work. The slight nudging of my doctor urging me in a round about way to change my lifestyle has turned into a big shove from mother nature. I always insisted that my disease was not bad as most. I did not even see the need for me to be on some of the aggressive treatment I was prescribed. Honestly, until recently my record for taking my medication was not that stellar. I even drove to Texas (twice) this year.

The truth is I have been secretly denying the increase in the intensity of the symptoms of the disease. The only one I would let in was my husband; however, I would still pull away, fearing that it would try his patience. On my first trip to Texas, I secretly suffered the first few days of recovering for the trip. For me, it was worth it, that time that I spent on the rode alone was great! However, this second trip took a toll on me. Rather than just the joint pain and fatigue, I could feel my mind wandering. My inability to grasp things as quickly as I usually do at work. My inability to get enough sleep no matter how many hours I slept. Old pains coming back. Each joint and many of my major muscles letting me know that sensation exists.

This morning I woke up with a symptom that I had not had in possibly years – the pain in my chest and the congestion that doctors sometimes seem not to pick up. So many things are happening to my body including the exaggeration of some other issues. I hate to admit that I have to accommodate this disease more than I have in the past. The main adjustment is adhering to my doctor’s wish that I work from home and avoiding the sun. How do you avoid the sun? This means not going to as many of my son’s events, this means keeping the blinds down when I enjoy the natural sunlight, this means wearing clothes that cover up my body … this means saying no to tennis when friends call.

How do you get people in your life to understand that sitting on the porch may lead to a week of exhaustion? How do you change family outings to the movies and a night round of the tennis court? I don’t know how to adjust, but I know I have to.  How do I let my pride go to build the appropriate support system?

I don’t know what the future brings, I know adjustment is necessary.  I know acknowledgment of what is slowly happening inside me will allow me to take care of myself a bit better than I do. It will also make me admit that deep down inside I don’t think my family can make it without me – it exposes my obnoxiousness. 2008 is a year for change and transformation. I guess I really did not realize the depth of the change or the fears I would have to conquer.