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.