Chesapeake, Virginia for Christmas

Friday December 21st we left for Norfolk Navy Base where my son Jason is stationed.  Actually they live in Chesapeake, Virginia.  It took is 9.5 hours to get there and they were all standing outside waiting for us.  They included Jason, Rose, Junior, Jarrett, Josh and Jonah and FAITH!!!! It was so good to see them all but especially FAITH.  I had not seen her since she was 12 and she will be 20 in February.  She has grown into a beautiful young woman that is a Sophomore in College with plans to go to Florida State next year. Hugs were happening.  We had a nice Christmas Eve service at their church and Hors d'oeuvres and Honey Baked Ham after..  Did shopping and the NAS exchange and drove around and saw the Naval base and all the ships. I did not know there are only 10 active Air Craft Carriers now.  He is on the USS Theodore Roosevelt.  He is the Air Operations Officer for the flight deck.  They are giving it a complete makeover and it will be back out in the water this summer.  
We had an awesome visit, a great Christmas, got to experience some of their family traditions and more.  One of their family traditions is to listen to a CD of my mom singing Christmas Carols while they unwrap presents.  We also told the kids about our favorite Christmas growing up.  That was nice. Santa was good to everybody and the trip was too short.



On the Lupus end of things.  My legs, knees were never worse.  I had to be helped out of the chair almost every time I got up.  I believe it was due to the bedroom being on the 2 nd floor ( all the bedrooms were) so I had to go up and downstairs several times a day.  I avoided it as much as possible but I paid dearly..I am taking 3 cellcept now.  2 in morning and 1 at night. I see my rheumotologist next week.

Other than that it was a perfect trip!!!

For to us a child is born,to us a son is given,
and the government will be on His shoulders.
And He will be called Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.
Isaiah 9:6

Thanksgiving Weekend

Thanksgiving Day 2012, on Prednesone which may be a good thing to get me through. I had a tooth pulled and am now experiencing a dry socket but all the family coming to our house!! So excited.
Jason and Rose
Regina And Dave
Heather and Matt
Jason and Becky
And 12 of our 13 grandchildren.  Total of 23
It was a awesome long weekend.  Lots of excitement and lots of help from my daughters.  Heather, Gina and Rose stayed in the kitchen and helped which was wonderful.  Hubby washed all the dishes from Christmas dinner by hand. All of them.  So wonderful. My Lupus did not keep me down and it was a wonderful Thanksgiving.  I am so blessed.

Thanksgiving Week

Itching all over again....Lupus....the wolf.....I have not slept in 3 nights. Unfortunately I don't think hubby has either.  I Called my Dr. And she's put me back on prednesone for the itching.  Too tired during the day to do anything.

Absessed tooth which is causing pain in ear, neck glands and shoulder.   Had to get tooth extracted yesterday.  The day after pain is still very real.  Alternating tramadol and ibuprofen.  Had to go downtown Atlanta for a meeting. . I barely made it through I was so uncomfortable.  Thanksgiving is in 2 days and 23 family  members coming.

The hardest thing to do is not clean like a lunatic like I usually do.  I just can't and they don't care anyway.  15 minutes after our four kids their spouse and 12 grandchildren are here it won't matter anyway and I am more excited to just be with my family then anything.

The best made plans of mice and men often go astray.....

I wish it weren't true - but I can't act like it isn't: I have joint pain BEHIND my knees, plus a wave of fatigue that can't  be ignored. Bummer! It really should come as no surprise, given all the times this has happened as soon as I get off Prednesone but typically the pain is in my kneecaps....so another place to hurt...great....

The good news is I saw my Rheumy yesterday and she is starting me on a new medication called Cellcept.  I have researched it at this point and the research was positive..... if I just don't read the side effects.....

When I went to pick up my Cellcept the pharmacist ask me if I was having a organ transplant?!?!?!?!?....hence the research.... Uh...no....she then explained it is used for many things and when I said I have Lupus she was quick to nod and tell me it is used for  autoimmune diseases as well.....

The plan had been to have the Benlysta IV treatments but my insurance wants a $2400 deductible which we don't have....so doc thinks this will do the trick.  I take my first one tonight....

The best made plans of mice and men often go astray.....

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11 NIV)

I blew out my knee (well it felt like it!%!%)

Kielce mountain camping trip.  We have been looking forward to this all year!!!!
It's been a year since we have been here...a year since we have camped...A year since I was diagnosed with Lupus.  A year since I started blogging.

The Weather in North Carolina was great! The lows in 40's highs in 60's beautiful weather.  Only rained one night which made good sleeping in the camper.  Pretty sure we hit peak leaf color but they just weren't as brilliant as usual. Very few red leafs.  Yellow is everywhere and by far the most  prominent color.

We have had great family dinners with Teena and Gary in their cabin as well as our camp site.  We drove on the Blue Ridge Parkway and visited our favorite spots like the apple orchard and made many trips around Kierce Mountain in the 4 wheeler.  I didn't drive that much this time.  Mostly Rick drove and we couldn't go anywhere that Marley wasn't right there with us.

The first couple days here I was doing good, with little pain but I could tell the 4 steps up into the camper were wearing on my knees.
Hip pain was bad mostly getting in and out of Ricks truck.
Knee pain continued to get worse even though on prednesone...

Thursday was a bad day.  We went to Burnsville and shopped a little and I came back to camper and laid down most of the afternoon.

Friday worse day yet.  We did a tour of Hwy 197 climbing in and out truck to take pictures of beautiful scenery and waterfalls when we got back I was walking from camper bathroom to kitchen which is  down 2 steps and I had a pain piercing like a knife to my left kneecap.  I applied heat with a heated rice bag and later with a hand and foot warmer like hunters use and an Ace bandage. This make a great heating pad. Took extra Flexeril and max of pain and other meds I can take for one day and still in pain....

The nights were good and we slept well.  We were loving our flannel sheets.

Today Saturday is the last full day here...seems we have experienced the quickest week in all of history....

My left knee cap is swollen I will try to take it easy the rest of the trip but pretty sure it's serious as I can not bend and apply any weight on it.  As long as I keep it straight it's ok.  I have to remember to lead with my right leg.....

I have a  Rhuemotologist visit next Friday but I am thinking I will have to see her before then....

All in all a great trip.  We love our camper.  We love the North Carolina mountains and just getting away has done us both good. We thank God for the majestic mountains and the beautiful scenery that we love so much up here.

We thank God for loving us and keeping us safe and even for our pain.  Getting old is not fun but we find we are still blessed beyond measure.

NOT MY KNEE  :)
But how it feels!!



And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
 2 Cor 12:9-10

My Lupus is in the active stage...

My visit (Sept.28) with Dr Jonnala, my Rheumotologist was very interesting.  First of all I was hurting bad...I had been hurting this week and was ready to get some answers. When she walked in the first thing she said is how long have you had that skin rash?  I told her I had it when I was there the last time but not as bad so I had it over a month. She ask me how I was feeling and I told her about my severe hip pain, knee pain, lack of energy and she immediately said my "Lupus was in the active stage and we need to get it under control.  So we need to get you on Benlysta.". She told me it was an intravenous drug and I would have to come in every 2 weeks for a 1 hour treatments for 6 weeks than if all was going well I would start on monthly 1 hour treatments.  This is the new medication they talked about at the Lupus Symposium. I was so glad to hear her recommend it before I had to ask her about it.  I am very concerned about it but it sounds like the only thing to get my Lupus under control.....please pray for me that this works.  It has tons of side effects but according to her I am a prime candidate for it and I will feel so much better once it gets in my system.  I guess it takes a month or so....but FIRST we have to see if my BCBS Insurance will cover it. Then the dr orders it specifically for my height, weight etc...it may take up to 2 weeks to get it set up. Thanks for your continued support in my Lupus Journey....and yes, I am back on Prednesone....

• Deuteronomy 7:9 (NIV)
  Know therefore that the lord your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments.

Lupus Symposium

I went to the Lupus Symposium  Sept. 22.  I am so glad I went.  I learn so much and was even empowered to speak to my doctor and even challenge her about being so quick to use prednesone and not using the new medication that just came out.  (Belimhmab)

I also learned Plaqunel the medication I am on that was also used to treat Agent Orange also has been used for 50 years for Lupus because there was nothing else other than prednesone and aspirin.

AND if you were diagnosed with Lupus 40 years ago you were told to go home take these meds and you might live 5 years!!!!! Wow!!!

Lupus is still a misunderstood disease and needs a lot more exposure and research to get a cure...the symptoms are so off the charts and different for every patient it is sometimes years before you are diagnosed correctly.

I believe I had it for years looking back over my symptoms before my Dr diagnosed it but I am so thankful she did and it only took 2 doctors not 4 or 5 like so many have to do.

They had  4 Drs that spoke 2 Rhemotologist , a cardiologist and a neurologist.  They each spoke for about 20 minutes on their aspects of lupus and how it effects the organs and then they gave us 1 hour to ask questions.  It was so inspiring to hear all these ladies from ages 8 yrs old to elderly have the same thoughts questions and concerns as me.  At the end there was a Patient Panel with several stories.  Very inspiring..

John 6:2 (NIV)

and a great crowd of people followed him because they saw the signs he had performed by healing the sick.

Lupus is trying to control me...

I have been off the prednisone 1 week.  Friday the 14th  started Hip pain. More like the groin area ( do women have groins?) both legs at the top.  I had allot of walking to do at a meeting downtown with my work.  Walking back to my car it was evident that the pain was back AGAIN....  Saturday started stomach ache no appetite and major diarrhea.... Today Sunday morning brought on low grade fever continued stomach issues and fuzzy head feeling.....ugh!!!

I have decided to go to a "Living with Lupus Education Symposium"on Saturday the 22nd.  It is being done by "The Georgia Chapter of the Lupus Foundation of America" I hope to learn more about Lupus.  Would anyone like to go with me?

I have an appointment on the 28th with my Reumotologist.  She told me if the week worth of Prednesone did not straighten me out we would talk about changing some of my medications.  I was fine after the 2nd day of Prednesone but 2 days at most after taking it back comes the joint and muscle pain......I hate this!!!!

Life is to the point where Lupus is starting to control me and I WILL NOT DO THAT!!!!! Hoping I get answers at the symposium...

Luke 6:19 (NIV)

and the people all tried to touch him, because power was coming from him and healing them all.

Where Did August Go????

Where did August go ???

We got a call that Ricks mom had taken a turn for the worse.  We left on August 3rd she was in so much pain. On Saturday I got out my IPad and as Rick and I sat with her I sang His Eye is on the Sparrow.  She just smiled so big.  I was so glad I was able to do that for her...after  hospice was called in and for the next 2 weeks she laid in a morphine like coma to keep her out of pain..

   We saw our 29th  anniversary come and go on August 6th. Forgot my granddaughter Hope's birthday the same day.... I Did a constant family text to keep everyone at home up to date on Donna.  She died on August 16th.  The viewing on 19th funeral on 20th.  Such a bittersweet weekend....so glad she is not suffering anymore....

Got back to work on Tuesday the 21st and was off Thursday 23rd to prepare for Jason and Roses cross country move and a long weekend visit on the 24th.  Jason's family got here on Friday.  So,excited to see his  family and spend time with the boys.  Went to a few old favorite restaurants of theirs Rocky's and Brusters and went to the pool a couple times.  Great weekend.  Sat between both kids at church and Heather led choir and Hope sang "Amazing Grace My Chains are Gone."

Back to work Tuesday 28th and got a call Jim Mayes had died.  Great friend and as classmate at church.  Viewing Thursday with Honor Guard and funeral Friday with 21 gun salute and bagpipes.   The song they sang was "Amazing Grace My Chains are Gone."

11 year old Caeleigh called that evening and told us she led her 10 year old sister Makenna to Jesus!!!

A Lupus Flare started Wednesday 28th with extreme pain in my hips / upper leg joints and knees.  Thursday was horrible. I was in Kroger after work and didn't think i was going to able to walk to the front of the store....pain was sooo bad.

That night at Jim Mayes viewing i had to sit alot....Went to rheumotologist Friday. Put me back on steroids.  I told her I felt like I was going backwards... Have had alot of knee pain.  Hard to stand up after sitting or driving. She said to take prednesone for a week and if it works fine but if I have another flair in the next month she may have to change my autoimmune medication.  That makes me nervous.  Well now it's labor day weekend which we are so thankful for.lots,of resting, naps, church, movies and just resting with my hubby.....where did August go???? it was just a whirlwind for us.....

  I had an appointment with Dr  on the 30th  and by then the pain was worse.  She started me back on Prednsone for one week.......

Ecclesiastes 3:5 (NIV)

a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing,

No one knows the day or the hour....

As my hubby turns off the light last night to say goodnight it was like God spoke to me and said that's another day...gone...Did you live it to the fullest? Did you love to the fullest?

As we get older time seems to be so much more important..is it that we see it differently because of our health issues? Because we have precious grandchildren that are our heart walking around outside our bodies? Because we see the shape our country is in and know how close we are to the end times? Whatever the case I think last nights thoughts and prayers were about my mother in law.

Ricks mom is living on borrowed time so to speak....she was diagnosed with type 4 lung cancer on March 29th of 2011, (Rick's birthday). She was given 3-6 months. She has been up and down, good days and bad. 16 months later with extreme back pain and more test we were told the cancer is in her lymph nodes and her bones. Her time is growing short. Lord knows the Doctors do not when the time will be BUT GOD knows.

It brings to mind that all of us are going to die and no one knows the day or the time...keep your loved ones close. Live every day as your last.

Please pray for Donna that she has strength to continue to have daily radiation. Pray for strength for her husband who has been her one and only caregiver for these 16 months.

"No one knows about that day or hour, not even the angels in heaven, nor the Son, but only the Father. Mark 13:32

I have been dreading this week...

I have been dreading this week but it is here… My brother David died 5 years ago on July 25^th which just happens to be my son Jason’s birthday.  David would have been 60 on July 18^th…. How can that be.? We are still young kids…aren’t we? Until we look in the mirror…who is that looking back at us?  I heard mom say that so many times over the years.  She died one year ago this Saturday, July  21^st. One of the worst days of my life….How to get through these days?  The 18^th through the 25^th hold horrible memories… How do you just think about the happy times…they always end up being sad…..  I have tried and tried to push it away…don’t think about it… just don’t think about him…her..… recently I have been able to speak my mom’s name…that’s big…….. I have not had the courage to go through all the boxes of journals and pictures piled in my bonus room and guest room…it still hurts too much… In my life I have lost my brother Dale when he was 33 to 2 Drunk Drivers hitting head on…he was a passenger and the only one killed…  I lost My Dad to Bone Cancer in 2003, My Brother David to Liver Cancer 5 years ago and my Mom to Congestive heart failure which led to her fall and the broken hip she never recovered from… Sometimes it just seems like too much… WHY??? But God.. He knows and I try not to question because without Him, I would not be able to face these days coming up.  Thank you for your prayers as I go through these days and remember His mercies are new every morning.  Great is Thy Faithfulness…

Update: God is good all the time. My week was nothing like I dreaded because my God was in control.

The answer to this should be interesting....

Started itching 6/18/12 called Dr Jonnala's office and ask to speak to nurse. The front desk lady said I needed to talk to the dr and she would have her call me..By Wednesday the itching was not so bad and I never received a call. I had some vacation days to take a break and Thursday and Friday were pretty good days. Saturday we went to the pool and unfortunately I got too much sun . I started itching bad by Sunday night I had to take Benadryl it was so bad. I felt like I was being ate up by something...Rick was not itching however we checked the dog for fleas and found nothing...we keep K9 Advantex II for fleas and tic and mosquitoes on her religiously...I was trying to figure out what in the world was going on....I have red bumps and spots on my legs and arms and some on my back and chest....I've tried aloe and still am itching like crazy. Needless to say I have put in another call to the Dr reminding the lady about our conversation last week and ask her if I should see my primary Dr or keep waiting for them to call me...I'm pretty sure I should hear back soon....
Just a note I have been on Cymbalta for 6 weeks...itching, rash is a side effect but would it take 6 weeks to have the reaction???? It sure is working for my pain...I actually love it......could it be from getting too much sun? I never hurt from the redness but I was very red..still am a little bit..but have been using aloe for it......right now I just need relief. Yes, itching is also a symptom of Lupus....The answer to this should be interesting.....

Update: Rheumotologist thinks its the Lupus. A flare is what it's typically called.....off to the pharmacy to start on prednesone. If the itching stops with that..it's for sure Lupus...if it doesn't it's most like side effect from one of my meds....

Itchy night symptoms..but why?

Well I have been very happy with the new medication Cymbalta, the Dr. put me on for pain.  I have had less pain.  No thigh pain and no arm pain. Mostly just back and knees and not real severe so I have been happy with it effects.  A few nights ago (June 18) i started Itching… all night.. Last night was even worse.  Today I am still itching not extreme but itching all over.  Head neck, ears,back, arms everywhere..... At night it was all over stomach, legs, thighs, everywhere… Decided to Google it and found 2 things… One of the many symptoms of Fibromyalgia is itching and one of the MAIN side effects of Cymbalta is ITCHING…. So I called my Dr. to see what she thinks… Waiting for her to return my call. Well today is the 20th and I have still not heard from my Dr...so I thought I would post this. It's much better during the day but nights are itchy...I will call her tomorrow...not happy about that....anyway since all this we had Fathers Day and it went well. Dinner was at Longhorns Steak House with Rick and Heather and Matt and kids. I put some big red beautiful flowers on mom and dads headstone. Now I am looking at a 5 day break from work and I am VERY excited!!

I pray it continues....

I haven't blogged lately so I must catch up on the latest Lupus updates. The muscle pain in my left thigh and my right arm that I have suffered with for over a year has not hurt in over 2 weeks. When I saw my Rheumatologists in May she gave me a medication for Fibromyalgia, Cymbalta ( keeping me on my Lupus meds) I am amazed how after 2-2 1/2 weeks on it the difference it has made. I am still tired requiring daily naps which I never did before and may be a result of the 5-7 meds I take daily. But whatever the case I remember last year at this time....mom was in the nursing home...having horrible dementia and I would sit with her and just ache. Especially my right arm muscles and that continued up until 2 weeks ago even though I am on many drugs for pain and muscle relaxers etc...so I am thankful and happy for the new medicine even though I was apprehensive about another drug...I have now went from 6 pain pills a day to 2. When I saw my Dr this week it was the first time i was able to tell I had no pain!!!!! Praise The Lord!!! I pray it continues.

A Whirlwind Weekend to New York City

Start spreading the news, I'm leaving today!
I want to be a part of it NewYork, New York!

And so we did. Me, Heather and Hope. The timing would be God's timing as I would be in New York City with my daughter and granddaughter and not sitting home missing my mom on my 1st Mothers Day without her.

Rick dropped us off at ATL at 6:30 am. He was spending the weekend in Florida with his mom. After checking in and being scanned by the big new machines, we grabbed some Starbucks and awaited the flight. It was a fairly good flight to begin with but the landing had a bit of turbulence...when we arrived at Laguardia we were met by a man holding a sign with my name on it.

We followed him out to a Lincoln Town Car that took us straight to The Alex Hotel. Room 409. We didn't waste much time in walking to Grand Central station which ended up being aprox 4 blocks from our hotel. That's where you catch the subway. We figured out with some help how to get a card loaded with money to be able to ride to see Battery Park and The Statue of Liberty and The World Trade Center.

Both were highlights although we did not take the boat out to Ellis Island. It was very windy and a 4-5 hour trip. We did pick up some souvenirs from some street vendors and bought double decker bus tours for Hope and I to do tomorrow while Heather was doing her shoot with Prevention Magazine. After much walking to ground Zero I was feeling the pain.... Alot. But it was so worth it. We took a cab back to the subway and at this point walking was out of the question for me. At our return to Grand Central Station Heather hailed a cab and when we told him we were going to The Alex he said you can walk there!! It's just around the corner!!!( everything is "just around the corner" to these people!) I said I can't walk..He said I can't drive you there! After Heather mentioning again I could not walk that I am in pain. I said I have Lupus...I can't walk....He took us just around the corner with the meter off and charged $5.00....I knew at this point I had to be more proactive with my meds and do less walking and more cabs if I was gonna see this town!!

After getting back to the hotel I took an emergency dosage of Prednesone which my Dr had me keep on hand for times like these. Heather and Hope went to TIme Square and I went to bed. The next morning I felt much better and at 7:00 am we were in a cab headed for Rockerfeller Plaza with our signs in hands to be on The Today Show with Lester and Amy. And yes we were on and had fun doing it.

It was time then for Heather to meet her group and do her shoot and us to get on the double decker buses and do our first tour but before we did I had to run in a pharmacy to get some icy hot and some heat patches for my back as standing the 1 1/2 hours at The Today Show I was having back pains. We got all set with that and off we went on the tour bus. It was a 90 minute tour of Time Square, The Theatre District, Time Warner Center, Lincoln Center, Central Park, many Cathedrals, Apollo Theatre, Grant's Tomb, many museums, we saw where John Lennon was killed, where Brad and Angelina stay when they come to NYC, Carnegie Hall and lots more. We both had dead camera / cell phone batteries and were ready for lunch so we split a meal at Planet Hollywood and went back to the hotel to charge our batteries.

Once we caught our breath we started our 2nd tour this ended up being 2 hours long and not as interesting but we saw soooo much. Again Time square which is where we ate and shopped. Macy's , The Empire State building, Union Square, Madison Ave., Broadway, Greenwich Village,Soho, Chinatown, World Trade center (from a different view) its now taller than the Empire State Building this week! We saw the South Street Sea Port, lower east side, United Nations,Waldorf Astoria, and back to Rockefeller Plaza and taxied back to The Alex Hotel. Arriving 2 minutes after Heather. Great timing.

Heather was exhausted from her interview and shoot. I cant wait to see the pictures and article about her success on The Couch to 5 K Program. I know she said they took tons of pictures and her face hurt from smiling so much and they were jumping on a orange couch in a park in South Brooklyn near the ocean. Can't wait to see that!!!

We were all hungry so on the advice of some of the people she was with that day we went to a diner right across the street (yeah!) and had a great meal and then took a little walk to a bakery called crumbs and celebrated our trip with a delicious cupcake. Mine was specifically for mothers and it was yummy!

Back to the hotel and beddy bye. At 7:00 am we are up and packed and pulling our carry ons we catch a cab to Grand Central Station, got on a subway headed to Brooklyn, NY to my dream trip highlight to hear the Brooklyn Tabernacle Choir SING in person!! We ended up having to shuttle between 2 subways due to construction around WTC and then caught another cab and arrived just as we had planned at 8:30 am we were dropped off at the front door. Some quick pics, check our bags at the door and we are on time to hear the choir practice.

It was a wonderful experience, the choir was awesome the spirit was there, Jim Cymbala honored his 97 yr old mother, the oldest in the church. Then we grabbed our luggage, grabbed a cab and off to Laguardia. I was pulled aside at baggage claim and had my hands swabbed to be sure I was not carrying explosives and then we had time to sit at the IPad tables (they were everywhere and FREE) and eat a quick lunch (we built our own burger on a computer and they brought it out), put some pics on Facebook and pass the time till our return flight to Atlanta. That flight was a little bumpy too and although I ripped the armrest off my seat we managed to get home safe and sound...

Matt, Bella and Ben picked us up at the curb and took us home. Now that is what you called a whirlwind trip to New York City!!!

Thank you Heather what a great Mothers Day. One I will never forget.

The Lupus Walk 

Thanks to all who donated to Lupus to help find a cure for this debilitating disease. 

I am sure from other post that those who know me heard that my daughter Heather was supposed to walk with me to quote her from her blog  “Ironically, Saturday at 3:30pm I was supposed to be on my way to downtown Atlanta to participate in the Walk For Lupus that I had been collecting donations for over the past few weeks. My mom has Lupus and we were going to walk together. John Powell, our Youth Minister was my biggest supporter of that walk. His wife also has Lupus. The last time I spoke to John Powell was to give him a big hug and thank him for supporting me and the cause knowing that his wife was dealing with the same thing as my mom. I had no idea that instead of participating in the walk that he had generously donated to on that Saturday that I would be singing at his funeral.”

So….I was on my own and determined to go because so many had donated to support me and of course we are walking for a cure to this horrible debilitating disease….

So the day of the walk is here…It was 85 degrees.  With my new Nikes on, sleeveless purple shirt (sunscreen over applied) and white caprice I leave the house at 1:45 pm.
I drive to Indian Creek Marta Station and the ride was pretty much how I figure only no other apparent “walkers” that I could tell….  It was crowded and I had a seat by the door.   The last man in was face forward to my side and as we were riding along, I felt wet droplets running down my arm! Not sure if it was drool or his sweat but either way…UGH!! Had to change Marta’s at Five points, go downstairs on an escalator (PRAISE!) and get on the Marta going North.  There we got on a Bus to take us with-in 2 blocks of Piedmont Park.
 
By now its 4:15 pm and I had to Register, get a  t-shirt, a butterfly on a stick for those with the disease to carry and a rubber bracelet.  By this time I was so hot, I stepped under the 1st EZ Up to get relief from the sun and ask where the water was.  By the look on the elderly ladies face I must have looked like I really needed it because she opened up her personal cooler and handed me a bottle of cold water.  I accepted it graciously.
 
OK it was 45 minutes till the walk started I had no chair to sit in and no way to rest other than a far off shade tree and the ground so off I went.  I was not sure if I would be able to get up after I sat down but at this point I didn't care.  I had to rest.

 
The walk started promptly at 5:00 p.m. and was led by a band.  It was hot and at this point I had unfortunately lost most of my energy.  I had the Nike GPS on my IPhone so I was tracking how far I walked.  The Brochure said there was a ¾ mile walk and a 2 ½ mile walk.  At this point I am thinking I am doing the ¾ mile walk …. After 1 mile appeared on my GPS and no sign of a ¾ mile walk anywhere,  I along with many others were ready to turn around due to the fact we knew it was a mile back from where we started.  Not counting getting out of the park and back to the bus stop.

When I finally made it up the hill toward the entrance of the park I saw a police woman and a Grady Ambulance…. A cool ambulance would feel really good right now… But I ask the officer if I was going the right way to the Marta Bus Stop and she said, Ma’am, I don’t know their schedule!  (Well that wasn’t what I ask but I had no energy to argue or I would probably be writing this from jail)… GREAT!  I kept following the ones that were straggling out hoping it was the right way and it was.  I even found a little bench to sit on in the shade.  The bus pulled up before long and as I approached the first empty seat with a good size woman I fell into the seat, the woman said, “You almost took my arm off!”  Near tears and not much caring if I did take her arm off and whack her across her face with it, I apologized and tried to ignore my pounding head and beating red face…… Back at the Marta station I ask her about which way I was going she mumbled something and left me in my misery….
Head pounding, shaking all over from I am sure at this point heat exhaustion I find the up escalator and ask around to be sure I am headed toward home…. 12 minutes later I am in a crowed but cool Marta train.   I am sure my face must be as red as a Fire Engine because of the looks I am getting. I just got out my Iphone and pretended to be busy until we get to the end of the line.  Indian Creek Station…..
 I find my car and am never so thankful for AIR CONDTIONING and my own surroundings.  The whole day is playing over in my head and unfortunately I am having quite a “pity party”…. My phone rings and it’s my hubby anxiously asking how my day went… And I erupt like a 2 yr old… Everything came pouring out tears and all…. Then I realized I couldn’t see to drive because the half of can of sunscreen is burning my eyes…I told him we would talk when I got home ( I know he couldn’t waitJ)
 
When I finally pulled in the garage my hubby was waiting for me.  He carried in my shoes which I had taken off as soon as I got in the car and whatever else he could grab to help me. I head straight for the shower and take a nice cool one.  Grab a robe and head to bed. The tears started flowing and I think I cried for 30 minutes…I am not sure what I was crying about…Probably frustration, exhaustion, fear, shame, feebleness, pain….

He offered to go get my favorite foods but nothing sounded good… He insisted on my favorite lemon pepper wings and chocolate Malt which was at 2 different restaurants, but he didn’t care…Such a sweetie… I rested, he left and returned and as I thought I couldn’t eat. A few gulps of Chocolate malt and I was sick at my stomach….I went to bed, as I fell asleep wondering if Lupus patients aren’t supposed to overdue it in the sun why they would have a Lupus walk in Atlanta at 5:00 pm…..

Thanks to all who donated to Lupus to help find a cure for this debilitating disease.  Really!

Next Doctor Appointment is tomorrow May 2^nd.  Anxious to talk to my Rheumatologist .

Nothing is what it was to be.........

The weekend for the Lupus walk is upon us. But nothing is what it was to be... Here I sit alone at home on Friday night. What was suppose to happen was Rick was going to an annual Bass Fishing Tournament at Lake Hartwell tomorrow and I was going to go walk for A Cure For Lupus with my daughter and one or 2 of my granddaughters, Hope and Isabella. What actually happened. Rick went this afternoon so they wouldn't have to get up in the middle of the night and drive to Hartwell and what else happened is just horrible. The Youth Minister at Sanctuary Baptist Church died. John Powell, apparently a heart attack in his sleep. He was Hope's youth minister, Matt's mentor and my daughter Heather's whole family not to mention her whole church's very wonderful friend, brother in Christ for years. I ache for their loss. So I am praying for them all. Please pray for the Powell family and the church family. The funeral is tomorrow at 3:30 and Heather is singing at Johns funeral. Pray for my granddaughter she is taking this so hard...you know how close youth are to their ministers.... And please throw in a prayer for me too for strength, clarity of mind and pain free joints. I am a nervous wreck I will get either mugged or lost....finding my way down town alone via Marta to Piedmont Park to the Lupus Walk tomorrow afternoon at 3:00... Thank you!

Happy Birthday in Heaven

It mom's first birthday in Heaven.  She was celebrating with dad and her parents, her twin and other brothers and sister, dads parents and brothers and sisters, my 2 brothers and so many more. Here we celebrated at Heathers house like the 7 years before Isabella and mom had their party together. I missed her so...

Dad's birthday is Wednesday.  I know they are rejoicing together.

Blessings

April 22nd. Moms 1st birthday in Heaven....I knew as soon as I woke up...but I thought I could do it...just another day, right?... As we sat Rick drinking coffee, me my Chai tea, Sunday morning, time to get a shower and get ready for church, our conversation turns to a news story that Rick wants to show me...not just any story I discover but one about a special singer, one I was very familiar with. Laura Story. And what song is she singing on this news clip none other than "Blessings". A song that has helped me Deal with my grief over the last few months, this song has helped me keep going and dig in deep when I found out I had lupus...

Here are the lyrics to the song, Blessings,

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise.

Thank you Laura Story!!

So at this point I am blubbering, he is apologizing and I am a mess mentally and physically ( my knees are swollen and stiff and aching), time for church comes and goes, we didn't make it this morning but we had some time to remember. Later as hunger brings us back to reality we grab some lunch, take in a movie I have been wanting to see (The Lucky One)and even manage to get new Nikes for The Lupus walk next weekend. All in all it was a bitter sweet day thanks to my sweet hubby and my Lord and even Laura Story.

And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.  (Philippians 1:6)

A Walk Down Memory Lane

Rick and I walked A Walk Down Memory Lane sponsored by Abbey Hospice in memory of mom. Her birthday is this Sunday and I finally felt I was able to deal with facing this pain I have been holding off...it went well. There were many many people there walking for their love ones as well. They gave us shirts and as we walked there were signs posted for us to read that brought special memories to us. There was a 3/4 mile walk and a 2 mile walk. I had not walked in almost a year and with my Lupus I was not sure if I could do 2 miles so we walked the 3/4 mile, then we walked the 3/4 mile again and part of the 2 mile so I could take pictures of some of the signs. I figure all in all I walked the 2 miles and now I am more motivated to walk the Lupus walk in a week and a half at Piedmont Park. I have raised $310 so far and hope I can raise the other $190 and meet my goal.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  (2 Corinthians 12:9)

I am a "LUPIE"

Why We Walk...

I am a "LUPIE"

My Pain - Is real and it's different everyday
My Fatigue - Does not mean I am lazy
My Rash - Is not bad Hygiene
My Hospital Stays - Are not a spa retreat
My Needle marks - Do not make me an addict
My Forgetfulness - Is not selective memory
My Weight gain - Is not by choice
My Clumsiness - Does not mean I'm intoxicated
My Stress - Is not a bad attitude
MY SMILE - Is my signature and I hope to have it for a very long time.
My Disease is LUPUS and it's my Journey...No cause and No Cure!

Jordan Clark's Poem, I am a "LUPIE"
Jordyn Clark, a 22 year old senior at Savannah State University, was diagnosed with lupus in 2009. As you read her poem, you will be inspired by...

As much as I needed her…. HE wanted me to need HIM…

At our Beth Moore Bible Study on James Wednesday night our Pastors wife, Telesa,  said something that made me have a GOD  moment…She said something to this effect. That “ when we are already going through a storm, going through all we think we can handle and then more is piled on us that is the time to be even closer to God.. Not to step away but to step closer because that is the time Satan can get a foothold in an instant if you let him….”

Here is what God told me Wednesday night but I have to tell you a story for you to understand.

 I have really struggled with the fact that I was diagnosed with Lupus 2 months after my mom died, it was like I didn’t have time to mourn and I was struck with this disease.  It was scary and I wanted to tell my mom. But I couldn’t.  And I ask God why…Why did I sit by her bed 2 months and not know…. I knew I was hurting and I knew something was wrong in fact I had questionable blood work done right before she fell and broke her hip and shoulder and pelvis. I had put it all on hold because I couldn’t leave her.  I had rescheduled my Rheumatologist appointments 2 times and finally one day about 6 weeks into her illness  I made a decision to go ahead and go to my Rheumatologist appointment as much as I hated to leave my mom’s side but I needed something for my joint and muscle pain. Not knowing what was wrong at the time I just thought I was tired from the whole experience of her fall, surgery, Nursing Home, Hospice situation and I never left her side except to get a few hours’ sleep…..  My daughter Heather said she would sit with mom while I went to the appointment…

My appointment was 3:30 pm in Lawrenceville at Dr. Lawrence office (I will never forget this experience!). 

I arrived early hoping to get in early and get back to mom.  Their office closed at 5:00 so it couldn’t be that long right?  When I arrived I explained to the check in lady my mom was in Hospice and I really needed to be here because of pain but I was anxious to get back to her …And so began my wait, as I sat I was hearing comments about someone had been back there for 2 hours…what was taking so long, etc.. At 5:30 pm,(again the office closed at 5:00) I was taken to the back and sat in a room.... I told the nurse I needed to get back to my mom and ask how much longer it would be…She assured me it would not be long….…. At 6:30 pm I was in tears, having never met or even seen this Dr. Lawrence, sobbing and exhausted mentally… I walked up to the front desk, reminded her what I had said when I got there and ask for my co-pay check back…

I walked into the waiting room and there were still many people still waiting, complaining…… I told them “I couldn’t confide in a Dr. that didn’t respect my time any more that this and they shouldn’t either!”  

 I stumbled to the nearly empty parking lot and I drove back to the hospice in tears and yes, I got lost on the way back. (I am in tears right now just remembering the mental torment I went through)…That I took those hours away from being with my mom, for NOTHING….

But God did not want me to know I had Lupus yet…..Because my mom did not need that burden on her death bed… He knew what He was doing even though I didn’t at the time….

 As much as I needed her…. HE wanted me to need HIM… WOW…

Thank you God for showing me this through our James Study, Mercy Triumphs!

2 More Weeks Till Lupus Walk

I was off Friday and Monday and we had a quiet Easter weekend. I did go to the Yellow River Game Ranch with Heather, Bella and Ben on Friday. It was fun.

We had a nice church service and then went to put tulips on mom and dads headstone. Had dinner with friends. .

Continuing to have extreme pain specifically top left thigh muscle and tops of both legs in groin area. Worse when not changing positions for a period of time such as sitting in church, Sunday school, at a meeting today, watching tv at night, sitting at dinner table, sitting in car...I am contemplating calling dr about my concern......this is with all meds....

2 weeks till Lupus walk and the most I have walked is the Yellow River Game Ranch...

April, A Big Month Is Upon Us.....

April, the month for birthdays (Mom and Dads) and Easter and the Walk for Lupus. So far I have only raised $70 and I haven't walked any to prepare. So I have a little work to do. I set my goal at $500, a little high I guess but I hope to raise at least $100 so I can get the shirt:). I am so happy my daughter and 2 of my granddaughters are walking with me.

Lupus updates, although I have been tired and requiring more sleep than normal, I have been feeling pretty good. I have aches and pains but nothing that has kept me down. Most days require a nap when ever possible which is so strange because a few months ago I would of told you I am not a napper, now I can nap at the drop of a hat. But thats ok.

In the last 2 weeks I know 2 ladies that have been diagnosed with Lupus. We have to find a cure. Please help support me as I walk. www.lupusga.org

A Tresure Hunt

I was on a mission this St. Patrick's Day morning to find my "Lucky Shirt". Just a grey shirt with a green shamrock that says lucky shirt....but as I entered the closed door of our guest room I was drawn to a little treasure chest...it is a jewelry box my mom left me...I don't go to those things very often...it's still so hard..as if I didn't go there that maybe it didn't really happen....just a few minutes looking into the bags for my shirt made me realize this hunt was not going to be worth wearing a shirt one day so I gave up and just as I was closing the guest room door the treasure chest caught my eye again....maybe I'll just take a peek.....and what caught my eye, caught my breath...yes, I have looked before but never noticed "The Butterfly". The sign for curing Lupus. I was diagnosed 2 1/2 months after mom died but she left me a butterfly. One of my "new favorite things". Another way God shows me, He has me in His hand...He has my back! And what I thought was going to be a cry fest turned out to be a bittersweet smile and a warmed heart.

So thank you mom for the treasure I found at the end of my treasure hunt on this St Patrick's Day, I found your butterfly gift instead of my lucky shirt, what a blessing!!!

Matt. 13:44a The Kingdom of Heaven is like a treasure, hidden in a field, that a person hid and found.

Please click here and support my walk for Lupus

Dear Friends and Family,

I will be walking in the 6th Annual Walk for Lupus on Saturday, April 28th the largest LFA walk in the country! I will be walking on Team Darlene to raise funds and awareness for the 55,000 Georgians with lupus and the Georgia Chapter of the Lupus Foundation of America.

My personal goal is to raise $500 since I was diagnosed October 3rd of last year. I walk to give hope, to inspire, to make a change and to find a cure! The funds raised in the walk will ensure the chapter continues to provide and expand the only statewide free educational programs, advocacy and awareness efforts including seven lupus symposiums and new support groups across Georgia.

Will you support my commitment and help me reach my personal fundraising goal? Lupus has touched me and my family.

Please visit my personal webpage of my lupus journey at
http://mylupusjourneymylife.blogspot.com/ or copy and paste it in your browser.

I have ANOTHER website at the bottom where you can track my walk and my fundraising goals. Just type in my name when you get to the sight.

Use a credit card on the secured website to receive an emailed tax receipt. You can also send a check payable to the Georgia Chapter with the form available at the website.

Ninety percent of every dollar stays in Georgia ensuring the chapter continues to be a lifeline and a voice of hope raising awareness and fighting for lupus families, the chapter also supports the national research efforts funding and advocating for investment in lupus. Ten years ago, no one spoke of lupus, there was little awareness and understanding of the signs and symptoms and very little investment in research. 1.5 million Americans have lupus, men, women and children and finally there is hope with the first new drug approved for lupus in over 52 years in 2011. Enclosed is a lupus fact sheet, to find out more and to get involved, visit the chapter website at www.lupusga.org

Thank you so much for your support! 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 make a tremendous difference!

Follow This Link Or paste it to address bar

http://www.lupuswalkatlanta.com/faf/home/default.asp?ievent=1001936&lis=1&kntae1001936=5206AD8DB93B484893C1806E9B125CF5&login=t

to visit my personal web page and help me in my efforts to support Lupus Foundation of America - Georgia Chapter

With much love and thanks!
Darlene

The Spoon Theory

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.


As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Another Kidney infection......or still have a Kidney infection......since 2/17

March 5,2012

Went to Dr Tanase she said I had a kidney infection. Blood and white cells in urine.

Prescribed Ciprofloxacn 500 mg. 1 x every 12 hours and Phenazopyrid 200 mg every 8 hours.

Rest with moderate drinking.
If pain persist let her know was concerned possible kidney stone.....

Feverish weekend

This morning March 3, 2012 I woke up freezing. I have been under an electric blanket on high with another quilt on top, fuzzy slippers and 2 sets of PJs. FREEEEEZING! When I finally got warm enough to get up I took my temp and it was 100.8. My normal temp is 97.4. I was also having lower back pain which makes me wonder still,if this is kidney related...after regular morning meds as well as Tylenol I got to feeling better, at least I am not freezing....but an emotional day. Felt like doing nothing.....did nothing. Was not what we had planned.... My sweet hubby went ahead with our plans and with a portion of our income tax return (which is a whole new thing to us since his business is not doing well) and went out and got us a new Vizio TV. That made me feel better:) The whole weekend I didn't feel well, had no appetite, had lower back pain and low grade fever. Today is Monday I called my Rheumy and she said to see Primary today to see once and for all if I have a kidney infection. At this point I have read that low grade fevers are a symptom of Lupus...there are so many...symptoms..

Thank you God for my hubby, for a job that I am able to take time to feel better and for knowledgeable Drs (primary is right around the corner) and Oh, and I love the TV :) I know it's a material thing but it's enjoyable when you're not feeling well.....

Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. James 1:2,3

It's a Flare

Well Dr Jonnala called and we discussed my symptoms and sure enough it's a Flare......ugh...back on Prednisone....it will take care of the pain and replace it with an all consuming hunger and no sleep but I will gladly trade at this time...Still trying to cope with and understand this thing called Lupus.......leaving for Florida as soon as I get my meds, finish packing and drop Marley off at Ashley's Pet Center for her Doggy Camp.

"But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'"
2 Cor. 12:9

Is this a flare?

Is this a flare? The last few days my joints have been really hurting. It would be so easy to just give in to the pain....but I have to work...I have to keep going....I worked half a day today...I am taking all my meds everyday which includes without ceasing morning and night tromadal which is a pain pill.... I take plaquenil which is for my Lupus symptoms and at night I take muscle relaxer called flexiril as well as a sleep aid ( the name escapes me) and another plaquenil and a tromadal. So......I have to wonder how I would feel if I was taking nothing......but I guess that is not important...it's that I am taking it and I am still hurting........I am not so sure my Kidney Infection is gone either so maybe that is what set this off....



Today I am hurting from my neck to my shoulders, my hips and my knees...last night sitting in a Bible Study was really hard because I couldn't stretch my legs out and they were cramped. By the time I got home I just laid on the couch...the cold leather felt so good to my aching body...I could not get up from the couch...I never ate dinner and when I finally just gave in to tears my hubby helped me up so I could go to bed.....ugh!!!!!!! I am waiting on a return call from my rheumotologist because I am worried about this continuing to get worsen.. We have a 6-7 hour car ride tomorrow to go see my mother in law who is very sick with lung cancer. Makes me feel so ridiculous to complain when she is so sick....

Lamentations3:22-23
Because of the Lords great love we are not consumed, for His compassions nevr fail. 
They are new every morning;  Great is Thy faithfulness.

Kidney Infection

So apparently it's a Kidney Infection... Rick is on his way to pick up the antibiotics and the Cranberry Juice. I'm taking this as good news at this point and I am sooooo glad it's Friday night!!!



Waiting on a call and hoping for the best

Well the test results are in… Blood work was all good.  But I have white cells in my urine which is not good.  It appears I have a bladder infection with the lower back pain and the other symptoms I am not surprised I just hope it is a simple infection and not Lupus deciding to attack my bladder… It does that so I am told………..with no notice………….. so I am a little disturbed. Waiting on a call from my Dr. who was out yesterday when the nurse called to tell me… Hoping an antibiotic will do the trick….to be continued….



P.S.  Decided against the sleep study.  Rick and I are just sure I don't have sleep apnea and we are going to concentrate on the issues at hand :) 

Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. Phil. 3:13-14

2nd check up. 4 months since diagnoses...

......Had my 2nd checkup with my rheumotologist. Good news my hair has stopped falling out. This means the Plaqunil is working. She did more blood work. Results in a week. Biggest complaint continued knee pain. Sometimes it's one or the other or both. Doesn't last long. It is a pain in the evenings or staying in one spot for a long period of time. Then getting up..its not easy. She did not change any of my meds. I am on tromadal (pain meds) all day and at night which is a slight concern to me..not to her..I have to wonder how I would feel without them....Still not feeling rested in the mornings. My arms still go to sleep at night but doesn't seem to be as bad. I can wear arm brace and that helps some at night only. Also if i keep my arms and wrist straight it helps. Neurologist determined I have carpal tunnel which evidently goes right along with Lupus.... When I come home from work, I fall asleep everyday whether I want to or not. Dr is wanting to do a sleep study..... Not thinking I am resting at night...duh...but wants to figure out why...not sure I want to do that but she is......to be continued......

How cool would it be if mom had a mobile?

We were driving to church yesterday and thought we would get a quick update on Rick's mom's health. Since Rick was driving he ask me to place the call. We both have iPhones and in order to place the call you hold down the "home button" until voice control comes on then you say the persons name and what phone you are trying to reach them on. In this case he said say, mom's mobile....when I said "mom's mobile" it hit me...what if MY mom had a mobile? Wouldn't that be cool???? Just to hear her voice...
I could just imagine the conversation we would have....MOM, How are you? Did you really get a new body? I miss you so much!! How is Dad? Is he really not blind anymore? Is his Parkinson's really gone? Is his cancer gone? I miss you all so much!!! Did you find my brothers David and Dale? Are they there? Are they healed? Did you find little baby Sharon that was stillborn? Did she know you? What does she look like? What about Grandma and Grandpa? Can you see me from up there? What is it like? Did you meet Jesus? Does he look like all the paintings you painted of him?

My questions go on and on in my head....meanwhile Ricks conversation with his stepdad is over. His mom is not doing well. She has stage 4 lung cancer...She's on oxygen..I know.....it won't be long.....Wouldn't it be cool if our mom's had mobiles?

John 14:2 In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you.

More test...

I continue to have really bad arm pain at night in both arms but left arm is worse. My Arms feel prickly, numb, burning and throbbing. Interrupting my sleep although I am on several nighttime medications... I spoke to my Rhemotologist, Dr Jonnala on Friday ( she answered the phone when I called!?!?) and she seemed sure these symptoms were not part of Lupus but something else. ..Sooooo Today I am sitting in Gwinnett Neurologist Dr. Syed waiting room. To see if they can figure out why this is happening.... I am praying for an easy cheap fix...so far it's looking like carpal tunnel, which Dr says is not unusual for lupus patients....more test....

Happy New Year

The holidays are over. We made it through. I missed my mom but we changed things up and it was different than normal. Rick's mom is doing fairly good dispite the congestion and coughing. Ricks sister is having surgery to remove her tumor on the 6th. My Lupus is still concentrating on my joints giving me fits when I overdo and especially at night. But all in all we had a good Christmas. New Years we saw our kids and grandkids in Florida, my sister and her husband and spent New Years Eve with the Drummonds (Rick's mom) A day off to get the tree down and back to work today on the very cold Tuesday. Not suppose to get out of the 30's. Brrrrrrrrrrr.........
We are praying for a good 2012 cause 2011 really about did us in....