A-Z Challenge for June

Q is for questions.

I have more questions than answers right now. Why was this not diagnosed years ago? Why did so many doctors miss it?

I want to believe the first dermatologist suspected and didn't want to put me through what it would take to find out. I also was way younger than the average person to get it. The age range is 14-44 and I was only ten. Why did no one connect my cold hand's and feet with Raynaud's Syndrome before I was in my late 20s? Why didn't someone check when I had mono in high school? Why when I tested positive for an autoimmune disease in 1993 did they only test for HIV?

All this goes through my head while I wait for the ology appointments to come. The first one is next Thursday. I'm also not the most patient person in the world. I want my ologists to all play nice with each other so we are all on the same page.

I'm not sure how to ask my questions when I do finally meet my new ology team. I know I meet them one at a time. I know I have questions for each and every one of them. I just have to get the questions right. The only ologist I'm waiting on is the most important one, the rheumatologist who deals directly with the lupus. Once the appointment is set with her, I know I'll be better. No, I'm not expecting miracles, I'm expecting answers. I want options. While I really don't want more meds, I do know they are probably in my future.

So, I'm in question mode for now.

TTFN

A-Z Challenge for June

P is for progress.

I now have my allergist appointment set. Still waiting on dermatologist and rheumatologist. Had a rheumatologist appointment, however we are changing the rheumatologist.

Also in case you missed the Facebook memo. My book came today so I can begin seriously studying about lupus.

I am excited about delving into it, however I want to finish the book on relaxation. Then I'll get into it. 

While yesterday was a no energy day, today was better. (If you consider I slept half of it away.) I got a book returned to the library, some grocery shopping done, and took myself to dinner. All in all not a bad day.

TTFN

A-Z Challenge for June

O is for overt.

Lupus does not always have an overt symptom. It is not always something you can see. Here's are some facts you should know about lupus:

• Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
• Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
• Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
• Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
• Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
• More than 16,000 new cases of lupus are reported annually across the country.
• It is believed that 5 million people throughout the world have a form of lupus.
• Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most people will develop lupus between the ages of 15-44.
• Women of color are two to three times more likely to develop lupus than Caucasians.
• People of all races and ethnic groups can develop lupus.

This information was taken from the Lupus Society of America. (http://www.lupus.org/)

For those of you who know my age, I am outside the range it hits. Being an overachiever, I should have been tested and diagnosed at age 10, five years before it should hit. While most people it only takes six years to get a positive reading, I am one of the rare ones whose doctors quit looking when the first test was negative. Which it is why it has taken 51 years for me to get a diagnosis. This little gem has been attacking my interal organs for a long time. 

Today is a fatigue day. I have no motivation and am tired. I look fine. I don't feel bad, just no motivation. I have no overt signs or symptoms. Very sad, but true. Ah, hem.

TTFN

A-Z Challenge for June

N is for ninja.

Ninjas are warriors. I have taken up the warrior call. My call is to become an expert on lupus. I am further called to share the knowledge I gain with others.  Let me start with a definition. Everyone wants to know what it is.

According to the Lupus Society of America (doesn't that sound like something you'd want to join?)

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

Now we ninjas are all on the same page, let's spread the word.

TTFN

A-Z Challenge for June

M is for mission.

I am on a mission. Before I'm done, I will have a Ph.D in lupus. With a friend who also suffers from lupus, we are going to start a support group in this area. At this time there is none.

Knowing what the disease does and how it has affected me, I am hoping to help others. My mission has a new theme song.

https://www.youtube.com/watch?v=xo1VInw-SKc

It seems appropriate.

I'll keep you updated on the how the mission goes.

TTFN

A-Z Challenge for June

L is for love.

Love of family, love of friends, love of the Lord.

I am most days surrounded by love and I know it sounds strange as most of my family is over 900 miles to the north of me. But, they reach out by phone. Some text. They reach out. I know I can count on them if I need to.

I have an abundance of friends here. I see most of them every Sunday in church. Some I see again on Monday at Next Steps, some I see Monday night at Bible study. Others I see Tues. morning at Bible study. The rest touch base during the week. They have become my make shift family and surround me with love.

Love is not lacking if you take the time to smell the roses as it were. I find love in each new day. In my surroundings and in watching people. Those who do for others and those who don't. It's amazing when you see an act of kindness. Knowing the recipient walked away with more than they ever hoped for. That's love.

Share some, give some.

TTVN

A-Z Challenge for June

K is for kicking.
I'm not referring to kicking a person. I'm referring to me kicking and screaming. No, not a temper tantrum. I'm not going to roll over and play dead because the doctor gave me a horrendous diagnosis. I'm going to do everything in my power to correct this problem.

I'm kicking up my walking and swimming. Exercise is good. I'm learning to really relax and let my mind take over some of the healing. We all know the mind is powerful. I'm doing my best to figure out what I am eating to screw up my blood sugars. Not that my diet has changed, from the past five years.

I'm learning to cook creatively so, I don't get into a food rut. I also know the foods I can eat without having an allergic reaction so am focusing on them.

Me, give up?? Me, roll over and just die??? Not likely. I'm going to hold on for as long as I can and go out kicking and screaming. You with me?

TTFN

A-Z Challenge for June

J is for journal.

I find keeping a journal is a way to keep my goals on track. I am once again keeping a food journal. The idea is to find where I have messed up my diet and how to fix it. It makes me accountable for everything going into my mouth.

Jounaling is a good way to get your feelings out without saying something you will later regret. I must have a dozen or more journals. They cover different periods in my life, different topics. I have a journal on how to be more creative. I have a journal including some of my poetry.

I use journals to catalog my days when on vacation, so I can put the words with photos  in a scrapbook or write a travel article. It also tells me when I look back if I was just existing or really living. Most tell me I've been living my life.

If you don't keep a journal you might try it. Not a diary of your day, but something you return to for memories or ideas. I journal sad times as well as happy times. Life has both.

Have you started a journal yet? Personalize it, make it special.

TTFN

A-Z Challenge for June

I is for incentive.

Everyone needs something to work for. It could be a pay check, a raise, some kind of dream trip, or any number of things.

In my case, the incentive is to live. Today I had to admit I am seriously ill. My blood sugar has been through the roof and I cannot figure out what is going on. The doctor suggested I might have lupus. I figured with everything currently going haywire in my body, I would test positive. Joke was on me, I again tested negative.  Do I have lupus, most likely.

My incentive to live has me doing my own research. It has me revisting eating plans I've had in the past and it has me out walking every day. I am not ready to be on a dialysis machine 4-5 hours a day three days out of the week.

My daughter has already offered a kidney should I need one. I am not there yet and I hope I don't get there.

What's your incentive?

TTFN

A-Z Challenge for June

H is for hope.

After seeing the podiatrist today and learning my foot issue can be cured within a week I am feeling hopeful.  He also suggested I read a book by two Harvard doctors, titled Relaxation Revolution. I am excited to read it and see if some of my issues can be cured with my mind.  The mind is a powerful tool when used correctly.

I have hope the future will be much different than I originally planned. Much is happening in my life, on a non-medical level. I am building relationships, repairing relationships, and growing in some neglected relationships.

Without hope, there is nothing. I have hope, for a bright tomorrow.

TTFN

A-Z Challenge for June

G is for grace.

I am not known for my grace. However, I find grace is all around me. I am graced with wonderful, interesting people in my life. People who show me grace and allow me grace.

Since I have come to South Carolina I have become a volunteer with Next Steps Johns Island. A fledgling program to help those in need. This is not a hand out program, the is a hand-up program. We refer people to agencies and others in the community who can help them.

We've found hearing aids, reading glasses, and sent a person to a job center. We've helped a person keep their home from blowing up as well as with some repairs to said home. We only work from 9am to 1pm on Mondays with participants. The rest of the week we spend our time finding the sources, agencies, and personnel to help them take the next step to improving their lives. It is rewarding when they return and have accomplished what we set up for them to do. It is humbling, they have so much confidence in us. This program could be useful in every state. No it's not run by the government. It's run by trained volunteers with the support of local churches. This work gives me a chance to share grace.

I meet Monday night with a group of people who have become my family of sorts. They bring grace. We study different Bible teachings. We all come from different congregations and religions. We all come for the same reason, to have a better relationship with God. We lift each other up in times of struggles. We come together when one of our little flock is in need.

Soon my Tuesday morning ladies will be meeting again for a different type of Bible study. Again these gatherings abound with grace. They are also filled with love and laughter.  We begin with prayer and end with prayer. What more could you ask for?

The church I belong to is also a second family. It is not a perfect church as the pastor reminds us every week. Nor are we perfect people. There is however, grace in coming together and communing together. They, too, take on the burdens of those in the church family through prayer and MOMS (Meals on Monday). Every Monday morning the ladies take to the kitchen to prepare hot meals for needy families and shut-ins. They try to pack grocery bags to help carry these families through the week. I've seen them in action and they are amazing. Yes, more grace.

So, while I am as clumsy as the next person, I've found ways to bring grace into my life. As a result I am blessed.

TTFN