Wednesday, May 9, 2018

Life Lessons in a Bottle

Growing up in Ohio the first 17 yrs of my life we had no pool, no lake, no river and no ocean.  Just a little creek. Up to your knees.  Enough to cool off and have fun.  We knew little about the dangers of the sun.  Mom warned us not to get burned but a tan was a young girls thing to do back in the 60’s....  I never learned to swim but I did love to tan as I got older. Suntan lotions were made to enhance your tan not keep you from getting one...  I spent a few weeks one summer in Upper Sandusky, Ohio and we played in Lake Erie.  My cousin and I used mercurochrome and baby oil to tan! We had no idea what we were doing......

When I was 17 we moved to Florida and I continued the baby oil process until I had 2nd degree burns complete with blisters on my chest.....I remember many times using vinegar cooled clothes to take the burning from my legs...I worshipped the Florida Sun year round....

Once I had kids I realized the importance of sunscreen. I used it on them at the beach and pool. They learned to swim and to use sunscreen on themselves and their children.  

Through out my adult years I still loved to tan and went through a tanning bed phase in my 40’s...we then moved to a swimming pool community where we have lived for 21 years.  I continued to go to the pool from May to September several times a week and use sunscreen. I now had grandkids and used sunscreen religiously. I started to understand the consequences of my neglect...

Fast forward to my 60’s... 

I have had 7 Basel Cell Carcinomas.  2 Squamous Cell Carcinomas. The worst one I had was a squamous cell on the front of my neck in the early 90’s... It was my first skin cancer. It was the size of a quarter and looked just like a hicky. That was the worst experience with a dermatologist and the procedure and the healing.  He cut around about 1/4 of my neck to be able to lap the skin back over so not to leave much of a scar..... It was horrible....So much pain.....

Now here I am home from having two biopsies that my (new and improved) dermatologist suspects are 2 more squamous cells. One is a little crater in my forehead. The other one is quarter size on the side of my  neck...praying my experience will not be the same as the first one I had.......Trying to turn it over to God.....The pool opens in a week and......Results will be back in 7-10 business days...Sunscreen has been purchased...Losing the longing to go to the pool.............


Sunday, April 29, 2018

Scooting Around

Well I have had basically a month of no hip pain.  It has been wonderful.  Wonderful!! Today is April 29th.  I had the Floroscopy March 28th.  Today I felt the first twinge of pain returning to my right hip.  Weakness and pain... Not a lot but enough to know it’s coming back.  Of course I knew the injection was ...a bandaid...Not a fix.... Dr Albert discussed that with me before both of my Floroscories... It relieves the pain... Not sure how long it will last.  The first one lasted 2 months... I expected this one to be at least that long.... Hopefully it won’t get that bad too fast because you can only get the injections every 6 months...

Before my injection I was hurting so bad I could barely get around.  I was using a cane and still struggling.  Walking in Walmart was not even possible. I had to resort to a scooter cart which I hated using cause I know how people judge you....... Or not go.

I had talked to my Rheumotologist about this and she said she would help me fill out the paperwork to order a scooter.  I could no longer do extended walking. Around the house I was ok. But a Scooter would be great for fall festivals, craft fairs, camping, lake house and going to the park or pool etc.  I was considering it but not sure how much Medicare would pay and can’t really afford it right now.  But need it. Want it.

A friend told me about a place called FODAC.  Famlies of Disabled Adults and Children.  They get donations of wheelchairs and walkers and scooters. Fix them up and donate them to people who need them. She told me to call and check on them and see what they say.  Well Praise the Lord they said there was no charge except for batteries and there was no paperwork or prescription needed.  I got an appointment for the following week and left there with a Blue Pace Saver Scooter.  It’s not new but it doesn’t need to be. It works and it is just what I needed I am getting used to driving it although I have not needed it because my pain has been minimal I am using it to ride around a bit outside. I did go to our Neighborhood Garage Sales on it and it worked GREAT! Much easier than getting in and out of the car which is difficult with a painful hip.  I just drove right up to the sales and most of them I didn’t even have to get off.

So there it is... Praying the pain will stay away longer and fortunate to have a scooter...


#Mayislupusawarenessmonth #Lupus #SLE #KnowLupus #NoLupus #LupusSTRONG #LupusAwareness#FightLupus #Findacure #mylupusjourneymylife #ineedacure

Saturday, March 31, 2018

Floroscopy is NOT SO BAD after all!

2nd Fluoroscopy

March 28th, 2018

2nd Floroscopy 

Took 5 mg Valium the night before
Day of Injection took regular meds with a Tramadol. Then I took a 5 mg Valium when we pulled in the parking lot. As directed.

The staff was nice and everything went like clockwork.

AS they prepared me for injection they talked to me about other things (Our trip to Tampa, Lisa etc) Dr injected numbing meds, then she injected the dye then the 2 cortisones.  It was just slightly uncomfortable.  Mostly pressure.

Sent home with instructions to ice if needed.  I did need to ice but it was not that painful at all.
That night the area felt weak and I iced to go to sleep.  I had a headache that night and woke up with headache next morning,

I was able to sleep on my side the first night. ( Have not done that in MONTHS!)

2nd day better. Slight pain in butt not much at all in groin. SLEPT GREAT! NO PAIN IN GROIN!

3rd day today. No groin pain. Sleeping on my sides again!!!

My R. knee still hurts so I am thinking that it is not the same issue.

I am writing this to remind myself to get these injections as soon as I need them and NOT WAIT to the point where I did this time.  The injection is nothing compared to the pain I have been in these last months.

Wednesday, March 7, 2018

Ortho Visit

UPDATE:::::::I did have to go to ER!  My hip/ groin area is inflamed. Nothing broke. It may be 2 separate things. Pinched nerve could be making pain radiate down my leg.  If it continues I'll have to see A Back Dr. But right now they are taking care of groin hip issue. WEnt to ORTHO Dr and a Fluoroscopy is all they can do. They inject 2 kinds of cortisone down into the joint with a camera. Long acting and quick acting. Hurts but it did work last time just didn't last but 5-6 weeks. The surgery Center is checking with insurance and then they will call me to set it up. P.S. I hate Fluoroscopies!  But it could be worse!

Friday, March 2, 2018


Methotrexate is NOT WORKING if anything my hip / groin is worse.... So I saw my Rheumotologist Friday Feb 27, 2018 and she took me off of it.  She was almost at a loss as to what to put me on because I think we have tried all the meds she normally uses... Either they don’t work for me or the side effects are bad... Most do not work......

We talked about Lupus and Osteoarthritis and my options.  We discussed everything from Medicinal Marijuana (which of course is not legal in Georgia), to what we have tried, to going back to the Ortho Dr and even discussed using a scooter if Medicare will cover...She started me on Gabapentin to see if it would help...

But my hip / groin area is REALLY REALLY HURTING BAD!!!  It hurts to sit...It hurts to lay...It hurts to walk...It hurts from my butt cheek to my ankle. The area from my butt cheek to my groin is the worse. Down to my knee is bad as welll.  To my ankle hurts when I lay down...I am using a cane at this point and last night I could barely get into the bed.  

It was one year ago that I went and had that Flouroscopy where they took a camera in and looked and put in the 2 different types of cortisone which lasted a little over a month.  I went back and had 2 more shots...Lasted 2 weeks...And I said I would NEVER do it again....

I have been taking Tylenol Arthiritis and Tramodol and whatever my Rheumotologist has prescribed for the last year. Trying to avoid going back to Ortho Dr....  

Seems like when I got the flu in February (it lasted 3 weeks)  the pain got lots worse....Then I did slip and fall on our wet deck last Saturday the 28th (Landed on my butt) and I am not sure if that is what made it worse, but it is worse.... The pain has always been in my groin area (right side) but when I had the flu it started working its way to my knee at night and if I don’t keep my leg straight and lay on my back at night it is bad pain and no sleep...  Today has been PAINFUL!!!! So...out of desperation....I made an appointment with my Orthopedic Dr for next Friday (earliest appointment I could get)..... I am so tired of hurting. I want to be able to walk and do normal daily activities without hurting and without a limp. I pray I make it till Friday without having to go to the ER. 

To be continued.....

Friday, December 29, 2017


IT has been a long time since I posted about the Lupus funeral.... A lot has happened but not a lot with my Lupus.  Ups and downs. All downs were to do with joint pain.  My kidneys are doing better.  THis is about my visit today with my Rheumotologist, Dr. Jonalla.

After talking to Dr Jonnala about my joint pain and how it is affecting me she reviewed my file all the way back to 2013.  She wanted to find out why I was not on Methotrexate. I knew i had taken it but was not sure why I stopped.  She said I had gotten nauseated after being on it for 2 months.  We were NOT sure that the meds were the cause but it was the only medication change or newest one at the time so she stopped it.  She ask me to try it again because of the reasons below. 

Methotrexate is one of the most commonly used drugs for the treatment of rheumatoid arthritis, and it is used in lupus patients to alleviate the joint pain and swelling of arthritis involving multiple joints.

 Because of it’s effectiveness, it is being used more and more as the first line of defense against RA, and other disease that affect the joints.  Immunosuppressants, like methotrexate, are currently one of the most beneficial and used group of drugs in treating moderate to severe lupus.    

This can be scary for some lupus patients, originally designed to treat leukemia in the 1940’s, methotrexate was approved by the FDA to treat arthritis in the late 1980’s. 
Primarily because it is known as a “cancer drug” and though it is generally safe at the doses given for Lupus, it is still a powerful medication. 

Soooo I am trying it again.  I am apprehensive because it is primarily used for cancer but after my trip today I am praying it works....My hips and knees really were giving me fits.  Going out almost and stabbing pain...

Sunday, April 30, 2017

Lupus, It's Real!

This is becoming all too real.....

Today after church I agreed to go to a funeral of my husbands bosses sister.  Rick had told me all about her and she had been in a coma for a long time and it was his bosses younger sister.I didn't remember all he said but i knew it meant a lot to him to go and he wanted me to go so I went.

So as usual my hips were hurting but I pushed through got my shower and got ready for Sunday School and Church. Had a great service and then we went out for Chinese food after church. Climbing up in the truck I am aching but I am trying to remember there are so many others so much worse than I am but still I hurt.  A lot....As soon as we ate we were on our way to the funeral home.  As always after eating usually the first meal of the day (I did not eat breakfast) my stomach starts churning, cramping, hurting.... Well it did and I needed to stop at a restroom.... It was bad and I was getting stressed and upset and I remember saying "I am so sick of living like this!"  Well we were out in the country and there was no place to go to the restroom so by the time we got to the funeral home Rick dropped me off at the door so I could run in and pray I made it... Yes it is that bad and sometimes I don't......this time I did. Thank you Jesus!

When I came out Rick immediately started introducing me to co workers and their wife's, kids, grandkids etc.  We walked over to his boss and I hugged his wife Elaine and she said its such a sad day and I said yes, and she was so young.  She said yes just 54 yrs old.  She had LUPUS and she had been suffering for a long time........I blurted "I have LUPUS!"  She looked a little uncomfortable and said, "yes, I know" and she changed the subject and then all Rick had told me finally came to memory that his bosses sister did indeed have Lupus and here I am at her funeral. I am at the funeral of someone who died from Lupus.  She was only 54.. SHE HAD LUPUS......LUPUS..Lupus...Lupus... 

Suddenly we were ushered into the chapel and the service began and it felt surreal.  As her broken family walked by us her husband and 3 children all grown but all broken from this horrible horrible disease that I shared with this woman that I did not know.  How destined was I to be at this funeral and for what reason. I know God sent me here... I was seeing my was so unnerving...but Lupus is real..Its horrid and its cruel and its painful and its REAL!  This just made it so much more real!!!

May is Lupus Awareness Month and in honor of Donna Wall Frost I will post everyday on my Facebook and My Lupus Journey page about making people more aware of Lupus.  What it is and that we need a CURE!  

FACT: Lupus strikes more people than AIDS, Sickle Cell Anemia, Cerebral Palsy, Multiple Sclerosis, and Cystic Fibrosis combined.