Friday, July 29, 2011

"All or Nothing"

I have always been an "All or Nothing" type of person but this has always caused havoc to me personally and those around me. I would give 100% to my children and fall behind in my sewing for my alterations business Never-Ending Possibilities. Then I would put 100 % into my company and my daytime job would suffer because I was so tired from getting no sleep. But mostly my life evolved around my job as Director of IT Services at a large regional accounting firm. It was challenging and satisfied every part of me. It was the 1st job I got after I got out of technical school during my separation. It was the job that allowed me the freedom to be there for my children as a single parent. So it became my life outside of my children.

So needing balance is something I have always needed but never been able to accomplish. This is not something I am use to. I always finish everything I start and I do it to perfection. Disclaimer is needed here. For everyone but me! I don't know where it got imbred that everyone or thing was more important than me. I remember someone saying don't be selfish share with everyone and take care of your mom and brothers and sisters. So I did.

Interesting that I transposed taking care of myself into being the best at my job when in reality it was a way of avoiding myself. Long hours at the job for recognition of my abilities became more important that who I was inside.

I am reading "The Shack" by W. Paul Young. In the book he refers that The Great Sadness had descended. When I read that phrase I started to cry because all of a sudden it dawned on me the great sadness had descended upon me. It started 8 years ago when I was having strange continual random illnesses that couldn't be explained. These kept getting worse until the day I was officially diagnosed with the autoimmune diseases of Sjogren's Syndrome and Rheumatoid Arthritis in 2009. This rocked my boat and my "All or Nothing" became if I can.

During the last year and a half I have been living in "The Great Sadness", I am too sick, if I can, and sorry I am too sick...too tired.

My husbands birthday was yesterday and the only birthday present he wants from me, "Is for me to control my life. Not let my disease control my life.". But he had more. He wanted me to start sewing my Life Tapestries starting with mine, finish redesigning my website, and be creative even paint. Since I can't work the way I am use to he feels that doing my home-based business will bring more money into the household taking into consideration my physical limitations. God thank you for this amazing man.

Long and short of it is I need to be more positive, take control of my life, eat better, exercise, sleep more, spend time with God Creator, and start to live a life in BALANCE.

Several friends of mine on Facebook said "Start with mini steps". This is the best advice I can recieve since I am an "All or Nothing" type of person. So now I need to see how living a life in balance in mini steps will look for me.

Thanks to all of you who love me enough to be honest.

Quote for the day
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” - Albert Einstein

Wednesday, July 27, 2011

Surviving my melt down

So what caused my meltdown? It wasn't one thing it was an accumulation of things. But when I meet with my doctor yesterday the tears just started flowing and continued for hours.  It wasn't a "Why me I am feeling sorry about myself" type of melt down. It was a "WHY" break down!

Quote for the day
There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love. -  Washington Irving

Melt down #1
I went to the hospital Monday to request copies of all my medical records there since I moved to Wisconsin on April 1, 2010. I don't know how many pages yet it will involve or how much they will be charging me. Then I got sent to radiology for Cd's of their tests. WHAT A SHOCK I HAD! I got 2 Cd's. She said she put each year on a separate one. When I got to lunch I realized that the 2 Cd's where just for this year and there were 10 dates. This is not a good year I am only at the end of July and have been there 10 times. Then I got a call that she didn't realize I had so many and she had my 2010 CD. I wasn't too excited to go back and see how many on the CD. Guess what, 5 dates for 2010.  All the money spent, owed, etc.

Positive thought:
Thank goodness for medical insurance and that my husband has a job he loves where they appreciate how outstanding he is.

Melt down #2
Recently I took 5-1/2 months (Oct 2010 through part of April 2011) to heal a broken cuboid and also fractured toes. I had to quit my job since it involved walking all day hooping commercial embroidery machines. The Doctors wouldn't believe me when I said my toes were fractured but they couldn't understand why it was taking so long to heal. So they ordered an MRI. Surprise toes were fractured as well as the cuboid and I ended up with a $4,500 ultra sonic machine. Well after 1 month of using this machine it healed.

Positive thought:
Now I have this great ultra sonic machine so maybe I can rent it out and help recoup some of the cost. Thankful that I can walk and chase after my dog who broke it because I scared him when I hit a high note singing. Yikes I never could sing. I got a lot of Facebook/Castle Age playing time and read lots of books.

Melt down #3
Since about March I have had lumps on 3 places of my neck and the back where the dowagers hump is. The doctor called it "buffalo hump". First thing they thought was it's a side effect from steroids, Cushing syndrome. NOPE never took any steroids. So both my internist and RA doctors sent me to an Endocrine specialist. The Endocrine specialist had me do the cortisol tests. Chewed on cotton for 3 nights. Normal. Stumped them all. Three MRI's of the neck scheduled. Still have the lumps so they were talking about biopsies. Funny think they did blood test again on cortisol when I was in the hospital sick. The test came back and it was normal. Saw the doctor yesterday and he said no explanation but no cancer or anything to worry about. LOSE WEIGHT. MAYBE that will help. Yuk...wearing a turtleneck in the summer is not an option.

Positive thought:
Praise God I do not have cancer or Cushing syndrome. Eating better is recommended by my family and nutritionist as well and I will feel much better with less weight on my joints. Hey I am a seamstress so I should make some clothes that hide this with all my fabric stash.

Melt down #4
I ended up in the hospital the last week of June for 4 days due to high fevers caused by a bacteria UTI and bacteria in my blood.The doctor in the hospital said to quit reading the Internet on my diseases and to leave my care to the doctors who are trained. I almost fainted. This same doctor took my IV drip from 200 to 125 and my blood pressure dropped critically low then he decided to pump a full IV bag in my quickly at 500 (not sure of measurement other than I saw 500). An hour later I had a fever to 101 and my heart was racing I couldn't breath and I was coughing like something was in my lungs. An hour later my temp was up to 102 and my chest was getting worse. I finally got a 2nd nurse to listen to me that I was getting worse. He called the doctor. Finally they pulled off everything and removed the IV not the port and within 1 hour my body calmed down but now I had had fluid in my lungs. Great job Doctor. Oh he was not my internist or my RA doctor. He refused to call them for consultation.

Positive thought:
I have a great best friend Kathy (since we were 12) who is always there for me. She dropped everything she had going on to get me to the emergency room and she sat with me till they finally admitted me. She made sure I was taken care of and she kept my mind busy with other things. This was a sacrifice of love because she and her husband Dan own Dark Acres Pheasant Hunts and this is the crucial time when they are growing baby pheasants. 

My son Greg and his wife drove down to take care of our dog and make sure the doctor was taking care of me. They were so supportive and made sure when I finally got released that I slept and ate properly till my husband Phil got home from PA to take care of me. The best part was their acts of love. They mowed my large lawn, cleaned out my cupboards throwing away unhealthy and expired food, and went shopping to have healthy food available when I got home.

Melt down #5
A little over two weeks ago within 36 hours from when I finished my meds from the hospital I started having blackouts. Went to get my hair done in a town 20+ miles away when I stood up to go to the bathroom everything went black. I tried to ignore it but it kept happening every time I stood up. When I got out to the car after the haircut I prayed to God to get me home safe. I got home safe, took a nap and when I got up every time I tried to walk my vision went black and I had to put my head between my knees. Back on the phone to doctors and now they were talking about monitors they wanted me to wear. Hey wait I am going on vacation the next day with Kathy. They wanted me to get to someplace to get my stats read. Around 5 pm I was feeling better but thought I better do it. Kathy to the rescue again and she took me to a nurse she knew. All stats where okay but pulse was 102, too high. I decided to let it go and see it if went away. It did.

Positive thought:
Friends are wonderful. They love you no matter what. God will heal you if you let Him so I choose to not panic and wait on His timing. I got to go on vacation the next day because I choose not to make this episode more than it was.

Melt down #6
My doctor yesterday confirmed that I still had a UTI infection and in fact that I had 10 in one year. So he was referring me to a Urologist specialist to get to the root cause of what was going on with my bladder. Oh yuk I have already had 7 bladder surgeries. More money being spent.

Positive thought:
Got my meds to take with refills and waiting for more test results to come back. But now I will drink more water. I am so thankful that they caught it and we are still working on healing it.

There is great freedom is writing out all your feelings. It gets everything out and one doesn't feel so stuck on oneself. Hopefully someone will read this and they will be impacted by something I said, enough to change something in their life today.

Blessings and prayers to all of you.

Tuesday, July 26, 2011

Facebook AGAIN.......

My family and some friends (not Facebook friends) gets upset because of the amount of time I spend on Facebook. I have tried to explain why......but they can't seem to get their head wrapped around it so I decided to write about it just to get this issue out of my head.

In the fall of 2009 I was very ill and had 2 surgeries within 2 weeks. I was basically bed ridden for most of the fall. A very wise Urologist Doctor knew there was something seriously wrong with me and started me on my journey of specialists.  I did go back to work eventually but I struggled with my health. During this time we bought a retirement home back where I grew up. We had it rented and we had a 5 year plan for retiring. Then the bomb dropped. That was the dreaded time I found out I had Sjögren's Syndrome and other autoimmune diseases.....INCURABLE! Whoa at least I knew why I was so sick for the past 7 -8 years. So after almost 11 years of working for the accounting firm I resigned and moved to our retirement home to heal.

During this time in bed I decided to venture into the world of Facebook. Why not I was a Director of IT Services for a distinguished Accounting firm. We had a Facebook page. I really blame it on Marie she worked with me. She and her sister got me started playing Mafia Wars. Then I really started making friends of friends and my friend list grew. All of a sudden someone invited me to join Castle Age. Yikes if I had only known......I wonder if I still would of joined Castle Age aka CA.

So why do I love Facebook?
  1.  You can be friends without worry that it interferes with your job performance or someone will tell your bosses your thoughts.
  2. There is always someone you know online and ready to I'M.
  3. I now have friends in almost every corner of the world and I am learning more about their countries and customs. I have also learned that some countries have a thicker skin and can say it like it is without worrying about hurting feelings.
  4. I have made many Spiritual friends and we support each other with prayers and healing.
  5. We share our lives and we encourage each other.
  6. I have found many people and groups with medical issues like mine and some much worse but we all support each other with information, prayers and support.
  7. I can connect with all my sewing friends and we share clothing design ideas, design troubles, pictures, etc.
  8. I get to see what my children and their friends are up to. Yes I know they don't really want me to comment on their profile pages. I send private messages instead. And I only check occasionally. I'd rather talk to them.
  9. If you remember earlier I said I was a Director of IT Services well my gift my whole life has been managing people. I am strategic and a mentor. So admin'ing for our CA team filled the void of no longer working. I get to organize and mentor people everyday. It is very rewarding to watch them grow up to be better players.
  10. Competitiveness. Yep guess you better add that to my personality. The CA guild/festival wars take care of this part of me. I just wish the guild wars were 3 hours max not 5. And it covers strategic as well. I love planning how to win again people I can't talk to. I should of been a general.
  11. Organization...ah yes the lists and making things flow well. All satisfied by admin'ing CA team and Guild.
  12. Friends. Did I mention friends well it deserves another  mention. Wow what great friends we laugh, complain, share our hurts and joys and encourage each other. Our friends and family are always so busy to see us. You have to make an appointment. My FB/CA friends I just have to log on and there they are.
I do have to agree with my family and friends that I need a better balance in my life. I need to eat better, sleep more, and have more of a REAL life. I do promise to not be on all day long and I have handed off some admin'ing responsibilities. But no I can't and don't want to give up Facebook, Castle Age and all my online friends.

Quote of the day:
“This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.” - Author Unknown

Sunday, July 24, 2011

Day of Rest

Sunday has always been known as a day of rest. I think my body is silently agreeing. The last 2 posts I talked about the pills I take and needing sleep. Well I forgot my pills and got behind in my sleep so today I have no energy and am exhausted. Last night I slept 8 hours but you can't catch up in sleep in one night. Shucks I could when I was younger.

Oh wait I am over 50 and hum I have you know what. No I am not mentioning what I have today. It is a day of rest....but I am a good girl today. I took my meds, am eating small meals, and drinking plenty of water.

Today I am playing and napping. No cleaning my dishes or house. No reorganizing.

Castle Age (Face Book game) was great this morning we won in Festival. Tough fight but apparently we won by % though our math showed we lost. Hey who am I to argue with CA.

I went into my tweeter account. I got caught up in redesigning the page and reading what I was missing. I linked it to my Facebook not my Castle Age playing account but my business account. Now I need to figure out how to associate it with my blog account.

After I am done blogging I am going to read a book, "The Shack" (Where tragedy confronts eternity) by Wm. Paul Young. But I guess I need to get out of my pj's just in case someone comes up my long driveway to visit unannounced.

So on with my day of rest...........

Quote of the day:
"How beautiful it is to do nothing, and then to rest afterward." ~ Spanish Proverb

Saturday, July 23, 2011

Naps are good

So I bet you are wondering why. First I need to explain what my symptons are so you can relate to what I am saying. I am only using the SS symptons since the others share the same symptons.

Sjögren's syndrome is a systemic disease, and its symptoms are felt throughout the entire body. Picture is from

Okay so what does this all mean.

My symptoms are:

  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips
  • a change in taste or smell
  • increased dental decay
  • joint pain
  • vaginal and skin dryness
  • digestive problems
  • dry nose
  • fatigue
  • brain fog

So I bet you are still asking where am I going with this. Sleep is important to me for many reasons.

Because of my dry eye's if I don't have them closed for more than 5 hours they become very dry and I can't see out of them. For those of you who wear contacts/glasses it is like when you 1st take them out/off. Even the eyes drops I use to keep them wet don't help.

When I don't get enough sleep my brain fog is more pronounced. Last night I slept 5 hours and yesterday I didn't take a nap. Because I didn't get enough sleep I can't remember simple and big things. Like if I took my pills today or even filled the slot in the pillbox. So now if I don't get my medicine I become sick and if I take too much I get sick.

Fatigue and joint/muscle pain become more prominent when I don't get enough sleep. When this happens I just sit around and read since everything else is too much effort. I really do need to clean house once in a while :)

So see sleep is good. Think I'll go take a nap.

“Sometimes the most productive thing one can do is to sleep.” - Author Unknown

Friday, July 22, 2011

Yuk Pills!

Since January of 2010 after 37 blood tests used to verify the 1st test showing that I had Sjogren's Syndrome and RA then verifying and adding that I had lupus as well, they started me on a medicine called Plaquenil aka hydroxychloroquine. So what was this toxic medicine that I would be on for life.

I went to Sjögren’s Syndrome Foundation (soon to become my favorite Internet website) to see what they had to say. Also I watched the video that explained how my body misunderstood and starts to attack myself rather then help heal myself. You really need to see this....

I had to search the Internet for a more detailed explanation of what I was taken. After reading as many sites as I could find and finding that they basically have all the same things in different ways it narrowed it down to the following:

Definition: Hydroxychloroquine is classified as an anti-malarial medication and is one of a number of drugs that have been used for many years in the treatment of malaria. It is also useful in treating systemic lupus erythematosus as well as rheumatoid arthritis and Sjögren’s Syndrome (all rheumatic disorders).

Side effects: Are difficult to anticipate. Generally side effects are not common, but can include (for short-term treatment of acute malaria) abdominal cramps, diarrhea, heart problems, reduced appetite, headache, nausea and vomiting. The symptoms for prolonged treatment of lupus or arthritis include the acute symptoms, plus altered eye pigmentation, acne, anemia, bleaching of hair, blisters in mouth and eyes, blood disorders, convulsions, significant vision difficulties, diminished reflexes, emotional changes, excessive coloring of the skin, hearing loss, hives, itching, liver problems or failure, loss of hair, muscle paralysis, weakness or atrophy, nightmares, psoriasis, reading difficulties, tinnitus, skin inflammation and scaling, skin rash, vertigo, and weight loss. Hydroxychloroquine can worsen existing cases of both psoriasis and porphyria.

The most common side effects are a mild nausea and occasional stomach cramps with mild diarrhea.

Eyes oh no......One of the most serious side effects is a toxicity in the eye and requires regular screening even when symptom-free. Toxicity from hydroxychloroquine may be seen in two distinct areas of the eye, the cornea, and the macula. The cornea may become affected (relatively commonly) by an innocuous vortex keratopathy and is characterized by whorl-like corneal epithelial deposits.

The macular changes are potentially serious and are related to dosage and length of time taking hydroxychloroquine. Established maculopathy is characterized by moderate reduction of visual acuity and an obvious "bulls eye" macular lesion. End stage maculopathy is characterized by severe reduction in visual acuity and severe atrophy of the retinal pigment epithelium.

So my family and friends ask me why do I forget to take my medicine when I get so sick from forgetting it that I become bed ridden. I have struggled with this answer all this time and now I finally get it. Because though it is good for me it is also toxic and I do not want to lose my eyesight. I love to read. I can read several books a day when I am in the mood. I love sewing, designing, and am a very visual person. I can't imagine not being on Facebook playing Castle Age with my friends. I can't imagine not being able to see Kat get married or my grandchildren when my children start to have kids.

But maybe I am looking at this all the wrong way.....instead of looking at the negatives I should be looking at the positives. That though my life will never be filled with my unstopping energy and activeness of the past it can still be rewarding. I am able to get up each day and I can still see and design. Beside why to do I want to be hyperactive like the past. I never slept more than 4 hours. I really like the 8 hours I get now :)

Quote for the day:
“People deal too much with the negative, with what is wrong...Why not try and see positive things, to just touch those things and make them bloom?” ~ Thich Nhat Hanh

Thursday, July 21, 2011

The Beginning

I have been blessed with children who love me and want the best for me. When they were little I prayed everyday that they would grow to be adults that were loving, caring, and self sufficient. I am thankful that they are all I prayed for. What I didn't realize was that they would be so much more than I prayed for. It is a wonderful to not limit God when you pray.

My son Greg and his wife Miranda are chiropractors and they worry about my medical and physical side. They give me advise on eating right, exercising, and getting chiropractic adjustments. Eating and exercising is critical for me as my autoimmune diseases eat my stomach lining, esophagus, and destroys my teeth enamel. My arthritis is located in my neck, lower back and hips. Chiropractic adjustments are critical to help with migraines and to enable me to sleep with less pain and the need of Advil every 4 hours, which of course messes with my stomach which is already ulcerated. They are concerned because I don't move enough and I need to move my body no matter how painful it is. Checkout their website:

Kat, my daughter, is a writer and works in Hollywood. Kat is my conscious. She worries about my spiritual side and how I am surviving in my everyday life. She is the reason I am starting this blog. She understands the part inside me that is so sad and lost. As a writer she understand how healing it is to get your bottled up emotions out. More important she understands that it's okay to talk about the bad things but to move on to positives things and that I can be an inspiration to others from this blog. Check out her website:

What has been so hard for me is my family and friends wanting me never to talk about anything that is happening regarding these diseases. If I can't talk to them then who can I talk to. How do I get it out of my head and heart if I can never mention it? It has gotten to the point I am afraid to tell them when I am ill because they don't want to hear it. I can feel them cringe as I speak.

I fully understand how it upsets them but I haven't gotten it settled in my head/heart that I even have Sjogren's and RA. Not sure why I am so thick headed about it. DENIAL!!!! Most one wants to admit that they do not have the body and health they want.

When I envisioned my life at this age I never saw this. I saw myself riding bike, skiing, hiking, running basically doing anything I wanted.

I just spent a week with someone who is like a mother to me. I watched as she did nothing all day long. She didn't clean her house (though is was clean it needed vacuuming, spider's and aunts taken care of), she hadn't planted her flowers yet or weeded her garden, and she wasn't taking care of house things like getting her septic pumped, and getting her hearing aid fixed. She couldn't remember what she was doing or just did. (Another side effect of SS is brain fog much like dementia but accelerated if I don't eat right and get enough sleep but only temporary). What this did for me was to hold up a mirror that said this was who I was becoming if I didn't start to make changes NOW!

Stay tune for my baby steps forward........