Tuesday, June 30, 2015

A--Z Challenge for June

Z is for Zyrtec!!!!!

Allergist was today. I can go back on Zyrtec. Have already taken it. Yeah, I will be able to breathe again.

Good report. Lung function is good. Has ordered a generic Flonase for backup and my Avi Q epi pens. Pharmacy called while I was on the way home. Meds won't be in until tomorrow. Of course, Heaven forbid my docs would order anything they keep in stock. LOL.

Z is also for zip. As this is the end of my A-Z Challenge. I'm thinking of doing another in Sept. Between now and then I will be doing my usual ramblings.

Many thanks to those who've been keeping up with the start of my journey. I appreciate your well wishes.


Monday, June 29, 2015

A-Z Challenge for June

Y is for yesterday.

I felt so much better yesterday after I finally got some sleep. I did well most of today. Then without warning I had dry heaves, I'd rather just be sick and get it done. I'm thinking this is a reaction to the Glucovance for my diabetes. I'm hoping my body will adjust to it soon. Dinner might not happen tonight. Need to get the stomach settled first.

Will not make it to Bible study, which makes me mad. I was looking forward to it. We always have good discussions.

So, I am longing for a day more like yesterday and to keep those days consistant.


Saturday, June 27, 2015

A-Z Challenge for June

I'm taking poetic license to say X is for Xhausted.

Part of the exhaustion is my blood sugars being too high. We are working on those. Some of it is due to my body still acclimating to the heat, this, too shall pass. Yet some is due to the lupus. There are days when I just don't want to get out of bed because moving requires the use of muscles and I have no energy.

I am not going to succumb to exhaustion. I'm going to push through it. Some days, I may push slower than others. I am not ready for spending the rest of my life lying around. I have way too much to get done.

Today I made a sign to put outside my door. I'm tired of people being worried about me.

Now, no one will have to worry about me. I'll just hang it outside every morning.


Friday, June 26, 2015

A-Z Challenge for June

W is for wondering.

I'm wondering what next? Thyroid is showing signs of acting up. The one thing I've always tested negative on is thyroid.

Wondering how to find old doctor's records. Will be starting with the Mayo Clinic as they ran some labs on me. Labs were drawn at Burns Clinic which is no longer there. Also trying to hunt up my first doctor in West Branch to see where I might find his records. I have a fax number for them to fax records to my new doctor. Wondering if we can nail this down?

Wondering if there will be more questions? Suspect the answer is yes.

Then there is just my every day, every moment wondering. But, at least I no longer feel crazy. So, you all can stop wondering about that.


Thursday, June 25, 2015

A-Z Challenge for June

V is for viscious.

Lupus is a viscious cycle. It has the power to attack any organ at any time. You can treat one organ and be well for a while. Until lupus rears its ugly head and finds another one. The problem is you don't know in advance what organ is going to be next.

While lupus is viscious, I intend to be victorious. I'm going to battle this beast head on. Everyone knows how stubborn I can be. I'm just going to dig my heals in and pull until I have lupus over a barrel.

Cheerleaders positions are waiting to be filled.


Wednesday, June 24, 2015

A-Z Challenge for June

U is for unique.

Symptoms of lupus are unique to each person. There is no pattern. Some things can happen in all lupus patients, but not necessarily at the same time. And they symptoms mimic other diseases, making it harder to diagnose. It mimics fibromyalgia for one. The person with lupus can be suffering great pain, with no determined cause.

Because all symptoms are unique, all treatment is unique. Some people with lupus take the same drugs. Others take different drugs. It all depends on what your symptoms are and how you react to the medications.

Some lupus patients reject the meds given, which is another uniqueness. Others tolerate the meds well.

We shall see which one I am going to be.


Tuesday, June 23, 2015

A-Z Challenge for June

T is for tenacity.

Something I have in spades. I will be the one hanging in there until the final strand in the rope breaks. then I will crash and burn. But I'll hang in there.

I am tenacious to the point of extreme. I don't give up even when everyone is saying, "Let go!" Nope, not me. I am the champion of lost causes to the bitter end.

So battling lupus means the disease has met its match. It doesn't stand a chance. I'm working on learning all I can about the disease. I'm going to work with my medical team to find the best treatment options for me and above all I'm holding onto a big thick rope for all it's worth. I'll let you know when the first line breaks, but don't expect it to be anytime soon.


Monday, June 22, 2015

A-Z Challenge for June

S is for scratchy.

Which is how the back of my throat feels. Since I also have an ear canal feeling plugged, I don't know if it is sinuses or if I've picked up a virus.

Right now I'm going to find my blankie, take my scratchy throat, and snuggle into my bed.
Night all.


Saturday, June 20, 2015

A-Z Challenge for June

R is for research.

I'm starting here:

Funny to learn you have a disease people have known about since 855 AD. Yet, we are still no farther ahead in getting a diagnosis. Lupus is the Latin word for "wolf" I knew I'd get your attention telling you. However it does not mean I am a wolf. It means my body is devouring itself. Lupus is described as the disease which not only ate the flesh but also the internal matter. 

Now if it isn't enough to ponder, there are different forms of lupus. Unfortunately for doctors, it reacts differently in different people, which is why it's hard to diagnose. 

All those little tabs on the book are telling me which chapters I need to focus on first, then I can go back and read other chapters which might be of interest or relevance to me. 

My siblings and my daughter are going to get sick of me sending them little tidbits about what it going on with me. None of them are afflicted with it. No surprise there. If anyone is going to get something out of the ordinary, it will be me. 

So, while you are relaxing at the beach, I'm going to be indoors reading. I have been told sunlight is not good for me...maybe there is a little wolf in me after all...werewolf?


Friday, June 19, 2015

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.


Thursday, June 18, 2015

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.


Wednesday, June 17, 2015

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.


Tuesday, June 16, 2015

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.

Monday, June 15, 2015

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.


It seems appropriate.

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


Saturday, June 13, 2015

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.


Friday, June 12, 2015

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?


Thursday, June 11, 2015

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.


Wednesday, June 10, 2015

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?


Tuesday, June 9, 2015

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.


Monday, June 8, 2015

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.


Saturday, June 6, 2015

A-Z Challenge for June

F is for Fabulous!!!!
I feel fabulous. I'm not dwelling on the medical issues in my life. I'm not dwelling on the fact, I am livng in an apartment instead of a house. I have a roof over my head.

It was a beautiful day here in paradise today. The sun was shining, the temps were around 89. The skies were pretty clear. I can still see sunlight through the leaves in the woods behind me. It has been quiet and peaceful.

So, I have not bothered to dress and be human. No big deal, was not expecting company. Have managed to finish the crochet part of the afghan I'm making. Now I have to cut 144, 88 inch strands of dark blue yarn, 144, 88 inch strands of baby blue yarn, and 96, 88 inch white strands of yarn. I'm not complaining. I can't wait to see it finished.

Have I communicated with the outside world? Only via text or instant messaging. And that's okay. Sometimes being away is good.

I've been blessed by a design team who is working to release my new short story, The Heir. Then re-release Target of Vengeance and finally rename and release Cold Case: Sleeping Dogs Lie. Once done with those they are looking to release the Romanian version of Sihastrul a book by Doris Plantus put out by Lilac Publishing. Finally they will work on Death Wind by Margaret F. Laing to get it out this year. Yes, I have been blessed.

So, yes, today has been fabulous!!! Hope yours was, too.


Friday, June 5, 2015

A-Z Challenge for June

E is for English.

The language I speak. The heritage of my ancestors. A subject studied in school.

The language of my country.

The English flag known as the Union Jack.

English tea, something I learned to drink at an early age in life and still do.

There's a lot to be said about English, but I'm keeping is short.


Thursday, June 4, 2015

A-Z Challenge for June

D is for decisions.

We are faced with decisions daily. Some are small and others can be life changing. Keeping mine pretty simple for the moment.

Buy a house:

Simple, find a house you like, make an offer, secure the loan, and move in. Unless of course, the one you like has already accepted an offer. So, you are back to looking for another you might like.

Build a house:dea

For me, I want a small ranch house, no basement, no neighbors that close, and nothing looking like everything else in the neigborhood. Plus side to buildinng, I get what I want and everything is new when I move in.

The third possibility is getting a remodel loan. Buying a house I'm okay with, but it needs work before I can move in. Not real sold on the idea and the Property Brothers don't work with small budgets.

In the meantime, I'm still looking. No decision has to be made right this moment.

Other decisions include what I'm going to do with my day and what I might want to eat during the day. 

Where am I going with regard to my writing is another decision. I'm happy with it it where it is. I have much on the writing agenda and need to clear it off before I take off on another tangent.

When am I going home, for how long will I be there, and who might I see. Those questions plague me daily. 

For now I'm taking one decision at a time and like Scarlette O'Hara, I'll think about the rest tomorrow.


Wednesday, June 3, 2015

A-Z Challenge for June

C is for content.

While there is a lot going on in my life right now, I find I am more content than I have been in a long time.

I have changed where I live, yet I still have a roof over my head. There are still changes coming.

These are my books which have been published through my company Lilac Publishing.  There are currently three more with my awesome design team and I am working on a fourth for them.  This gives me great content as they are actually providing a monthly income.

Yes, I am in love with my best friend. The best part is he loves me, too.

So, yes even though I am 900+ miles from family and loved ones, I am content.


Tuesday, June 2, 2015

A-Z Challenge for June

B is for blessed.

I truly am. First, the blood work this morning was quick and easy. Second, I had a wonderful brunch at Sunrise Bistro. Third, the man of my dreams is trying to get his sister to visit me while she is in the area. Fourth, I just had a call from Focus on Women Magazine and they want a 1000 word essay on how I became a writer to feature me and one of my books in their magazine. Fifth, for all the wonderful people, family, and friends God put into my life.

Yes, life is a blessing. May I always remember to count them.


Monday, June 1, 2015

The A-Z Challenge in June

A is for anticipation.
            The first flowers in spring.

Seems pretty straight forward. You might be looking forward to a package in the mail, your next vacation, the birth of a child, the list goes on.

My anticipation is the results of blood tests which Lord, please will explain what is going on with me. The downside is knowing you have a disease, but it only shows up during a flare up. Here's hoping this flare up continues for a few more days.

So, I'm looking forward to blood work in the morning with the anticipation, some of my questions will soon be answered.

In the meantime, I will anticipate every moment of the day so I can live it to the fullest.


It's a Dreary Sunday: Day 7

Morning pages were done with distractions today. Not a good omen. Especially since I woke up tired to rain. According to the news last ni...