LIVING WITH A CHRONIC ILLNESS

A new journey in my life. I mentioned in an earlier post that I was recently diagnosed with LUPUS. Since I was told, I have spent some time studying up on the subject. I am amazed at all the symptoms that I have had in the past few years that I thought were because of my age, my weight or the lack of exercise, etc etc. 

Today I was asked about the disease by a coworker. This is what I found online.

Lupus is not contagious. You cannot "catch" lupus from someone or "give" lupus to someone.



Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues.


Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS, the immune system is under-active; in lupus, the immune system is overactive.


You can then talk about what lupus is.



Lupus is an autoimmune disease. In some ways, lupus represents a kind of allergic reaction by the body, in which the immune system sees the body’s own healthy tissues and cells as foreign.


Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.


Lupus has many different symptoms, and because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, and/or visible skin lesions.


Lupus is unpredictable because it is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Knowing that lupus is unpredictable may help other people understand your physical and emotional ups and downs as well as the changes that you may have to make to schedules, plans, and commitments.


One of the things in this information that really hit home was the last sentence. I have canceled so many plans and events in the past couple of years that it became a joke about how I just didn't like certain family members or groups of people. I really want to post this on a t-shirt and wear it around so they know that it was beyond my control.
 
I am thankful that I finally went to the dermatologist. I have had this rash on my chest that would come and go for the past year at least. He took a biopsy and it was positve. This diagnosis has really been a blessing. Finally a reason for the fatigue (this is a big one for me), the achy knees, the catching every cold or bug that blew by me. Scott, Mom and my sister really thought I was just depressed and I kept telling them I wasn't sad or blue, I was just to darned tired to doing anything.  It is now something that can be treated. I was told recently that one way to live a long life is to have a chronic illness because it makes you take better care of yourself. I am waiting now to get in to see a Rheumatologist. This appointment should get me on a regime of living a normal life with this.
 
Sorry for the rambling, I wanted to share what is going on with me. Please keep me in your prayers as I begin this new journey.

THOUGHTS

1. I am exhausted.

2. Mamie, Scotts grandmother is not doing well. She is 96 years young and we were told today that we will only have for a few more days. She will be dancing in heaven. As Scott said it should be a joyous day as she has been ready for a few years. She is the most precious little Mamie you could ask for. I have NEVER heard her say a bad word about anyone or really even have a bad day. Wish I was more like her.

3. We are expecting MORE snow in our area tonight. I hate driving in the bad weather so it stresses me out.

4. I just found out that I have subcutaneous Lupus. I am thankful for a diagnosis it explains why I am always tired and sick or sick and tired. Will be going thru some more testing and doctors to find the right treatment for me.

5. My girl seems to be growing up so fast and I am not ready. She was talking about her wedding tonight and she says she wants to get married on a mountain in Oark Arkansas in a camo dress. STOP the car "where is MY daughter". She is such a tomboy. I gently explained that she will be married in our church in a white princess dress with lots of GLAM!! End of discussion

6. I shouldn't have eaten the BBQ from Dink's tonight.

7. Scott has lost 30 lbs and I am really proud of him. I need to get on that bandwagon.

8. I have 165 pizza swaps to make for Girl Scout Thinking Day event on Saturday. My fingers will be glued together by the time I am thru.

9. Did I say I'm EXHAUSTED

10. Time for bed. Maybe I will get to work a few hours tomorrow.

RESULTS

I had my second date with this guy today!

He likes to turn every which a way. But I got GREAT results.

NO CANCER!

When I first went in and the tech showed me the places that were in question on the 1st mammogram pictures. At that point I was slightly worried but I didn't let it really get to me. After a few more mammogram photos I had to go back to my dressing room to wait while the doctor looked at those pictures. Then another girl came to take me to the ultrasound room. OK now you think this would be a piece of  cake after the mammo BUT NO! IT HURT ALOT!

Anyway she did her thing FOREVER! Then the doctor came in  and apparently he knew I was worried so the first thing he said was "NO BAD NEWS TODAY"

WHEW

He explained what he was looking for. I have lots of spots that are just cysts which he said were benign. Since this was my first experience he wants me to come back in 6 months. He said they were worry warts so if he really thought it was something he would have been scheduling me for needle biopsy, MRI or surgery but he said if I were his wife or daughter he would be telling him the same thing.

Praise God for answered prayers!

Blessings

Pam

A WEEK IN MY LIFE

I love scrapbook guru Ali Edwards. You can see all her glory here http://www.aliedwards.com/.

I will be doing this over the next 7 days!

I have tried to do this before and failed.  I am commiting to document this week in our life. I would love to see what my Mom or Grandmother did back in 1940 or 1960 or even 1980. I hope Coco and my future grandchildren will treasure this too.

Off to take some photos and document my day!

Blessings,

Pam

5 YEARS

Last night I was treated to dinner by our Girl Scout Service Unit. Well me and a bunch of other fabulous girls that give their time and heart to Girl Scouts. We ate at Johnny Carinos, I had the baked cheese tortelini. Oh it was so yummy. It was very nice of our service unit to treat us when we should be treating them. They are a group of women that all have their own troop plus volunteer to keep our little part of the state going.

I received a couple of awards for perfect attendance at the unit meetings, Leader appreciation and my 5 year pin. It is hard to believe it has already been 5 years since Coco started as a little Daisy. There were my 5 year, a 10 year and a 15 year pins given. What a great thing to be involved for 10 & 15 years.

Girl Scouting is always looking for volunteers so if you are so inclined check out your local council office. I know help would be greatly appreciated. It doesn't pay well but the memories and knowing you might be making a difference in a girls life is well worth it.

THOUGHTS

You would never guess where I am!

Give up?

On my front patio blogging!

This so cool, the weather is perfect the sun is going down.

I see the shadows of the trees on the house across the street.

The birds are singing to beat the band. Every now and then I hear a weird one.

My neighbors wife is ready to go in but he is keeping her working. Oh he just started the tiller and messed up my bird singing. Now I can't hear what they are saying. Darn

I am just a tad nosey! Not that I would ever admit it to anyone else.

I am smelling dirt or maybe it is dust. A trace of a grill somewhere in the neighborhood. Wonder what they are cooking?

I have had a great day. Most of it was spent at the unemployment office. You know they could save by hiring more help. It is like the DMV slower than an old man on a tractor! There were 2 guys at the front desk and 1 of them was just sitting there with his arm on the desk holding up his head. I really wanted to tell them that I could at least look busy, so they should hire me. But I didn't, I just sat there and waited and waited and waited. Listening to other peoples conversations, pretending to read my book. To many people with sneezes and coughs too. I joked with the lady next to me that I need to remember to bring a mask with me next time. After all that waiting I come to find out that I won't get any money for another week or so due to the fact that I received a severance payout last week. Thank you very much, I can surely go 3- 4 weeks without any income. No problem, now I need to find the numbers to all my creditors to see if it is ok that my payments will be 3-4 weeks late. You can bet that won't fly. Like my honey says, it will work out we'll make it. This is coming from the same man that doesn't want to know what we owe on that credit card cause it might cause him to have a coronary!

Back to my bird listening.

Wow we have a lot of traffic on our little street. We need one of those signs that say SLOW CHILDREN AT PLAY. When you see that sign, do you think SLOW DOWN or they have slow children??
Scott always says something goofy about having slow children. Isn't that mean? Bless his heart he doesn't mean any harm.

Someone is doing laundry, I smell their bounce sheets.

Oh gotta go, someone is stopping to see us.

Catcha later.

THIS WEEKS PLANS

* CLEAN WINDOWS INSIDE
* PULL NAILS IN GARAGE TO READY FOR RENEWAL
*CATCH UP LAUNDRY
* FINISH CLEANING OUT SCRAPBOOK ROOM
* LOAD PHOTOS FOR DIGITAL FRAME
* LOOK FOR JOB
* PICKUP TICKETS FOR NATURALS GAME FOR GIRL SCOUTS
* GO TO GIRL SCOUT OFFICE FOR BADGES AND BOOKS
* REFINISH THE DESK WE BOUGHT THIS WEEKEND
* NORMAL KEEPING OF THE HOUSE
* COOK DINNER EVERYNIGHT NO EATING OUT
* EXERCISE DAILY
* TAKE MYSELF TO SEE THE LAST SONG ON WEDNESDAY

This is my to do list for the week. Hoping by putting it on here I will be motivated to get it all done. We will see on Friday.  It is supposed to be a wonderful week weather wise, we'll see.

Blessings
Pam

MY NEW FRIEND

My neighbor gave me this recently

I have wanted one of these for a long time and she just wanted it out of her house. Score for me. I use it now when I am watching tv. I am going to use it for a week and see if it helps me to lose some weight along with watching what I eat.

GIRL SCOUT CAMP TRAINING

I had the pleasure of spending Saturday at Girl Scout Camp learning how to build fires, cook on propane stoves, dutch ovens and box ovens, knife safety etc.

Warning lots of photos

How to build a fire. Due to the rain we had to pretend and do this inside. We did get to go out and gather tinder, kindling and logs for a fire. Then we had to distribute it back into the woods. This is leave no trace camping.

The photo above is a box oven. A paper box wrapped in foil with metal skewers pushed all the way thru, this will be your oven rack. Place hot charcoal in bottom. Each charcoal briqette will have 40 degrees of heat, if you need to bake something at 400 degrees you will need 10 hot briquettes. The tricky part is knowing when it is done. We were told that you use your nose. Oh and you punch a vent hole in each side on opposite ends.

Here you can see our cake and putting the hot briquettes inside. We used a charcoal starter. That was a new thing for me too. we heated them in a metal feed pan.

We made cornbread in the dutch ovens. this is me helping rotate the ovens 90 degrees every 15 minutes. I learned that you use the inches of the dutch oven to determine how many briquettes you need to cook on these.

Here is our chocolate cake. It was a little slanted but very yummy. Our yellow cake burned a little but it was all gone at the end of lunch.

Our cornbread was perfect from the dutch oven

Our main dish was foil dinners. We were supposed to cook these on the fire but since it was raining we cooked them with charcoal on the grills

Cabbage leaf, beef pattie, potatoes, carrots, bell pepper, onion, a dollop of cream of mushroom soup. Roll up and put on grill for 15 minutes on each side

My pictures got out of order. After you wash rinse and sanitize your mess kit (plate, bowl, cup & fork knife spoon) you place them in your dunk bag (mine was a lingere bag from the laundry dept) and hang them to drip dry. You would also use this bag if you need to dunk in the creek to rinse off.

The Girl Scouts have a definite way of doing things. This is our dishwashing station. You have to have 3 tubs, 1 wash 2 rinse 3 santize.

Another thing I learned is how to make fire starters. Take a paper egg crate, put wood shavings in each hole and then pour melted candles over each hole. Then you can take 1 little square to start your fire.

I am excited to teach these things to my girls. I think we will start with outdoor cooking meeting and then backyard camping.

The ladies the taught us were all volunteers and I am so grateful for the women that have a heart to help young girls be the best they can be.  

A LIST

* Pen and Paper
* Dress for weather with closed toe shoes and rain gear
* Sit upon or lawn chair
* Mess kit or bowl and plate
* Cup
* Eating utensils
* Dunk bag
* Bandana
* Pocket knife
* My own tent (optional)

Can you guess what this list is for?


Girl Scout camp training. I am spending tomorrow at camp learning how to take my troop camping.
I am excited about going except that the weather is supposed to be horrible. Calling for rain all day with a high of 45 and that will be in the a.m. with rain turning to snow.

Our menu is beef or turkey foil dinner (on charcoal or wood), cornbread in dutch oven, cake in a box oven, and S'mores on stick cooking. Doesn't that sound good!
I am SO NOT a camper girl. I have taken our troop to camp but we stayed in the lodge with all the convienences of home. I am going to be way out of my comfort zone, but it will be fun!

I will get to wear my new houndstooth wellies. They might be too cold so I will bring something else too. I had fun getting all my supplies at wal-mart today. My dunk bag is actually a bra bag from the laundry dept. I found my mess kit in the summer plastic dept and I found my very own pocket knife in the camping section for $1.00, Scott said I needed a better one but we'll see how it works.

I wish my girls could come with me to, I will have to take them all out to learn these things too. We might just have to have a outdoor cooking meeting!

Wish me luck and I will let ya'll know how it goes. I plan to take lots of pictures to document my camp experiences!

CHANGES

ARKANSAS'S UNEMPLOYMENT RATE JUST WENT UP!

My position was eliminated as of today!

It has been 11 months since I was called back from the 1st layoff!

It wasn't as devastating this time.

It still stinks like poo!

Last time I allowed it to really get me down and depressed!

I refuse to let it do that to me again!

I went to the unemployment office and applied for benefits right after I left the office.

I will do some spring cleaning

I will be home to meet Coco everyday

I will look for a job and ask God to open doors.

I will become a coupon saving mama

I will work on becoming a Proverbs 31 woman in my home

I will make it through this

I know the plans I have for you, declares the Lord, plans to prosper you , plans to give you a hope and a future!

I will be clinging to this verse for the next few weeks!

Scott is home and we are going to start our date night early with a early movie and dinner!

Blessings,
Pam

MONDAY MONDAY

I was home in bed again today. The pain is kicking my tail, but it is better tonight. Hoping I can make thru Tuesday so that I can go back to work.

I am also starving. I made something I could eat tonight.

Loaded mashed potatoes!

This is what those other people I live with ate.
Chicken stir fry, the photo doesn't look great but it was out of a box and not my usual with fresh veggies.

We have been trying out some new teas. The green teas, the cheaper brands, etc.

You just can't do any better than good ole Lipton. There is no other!

Sneak peek at my latest splurge. I have had it for a couple of weeks and Scott just got around to putting it together for me. Can you guess what it is/ where it will go?

Looking forward to Tuesday and getting back to normal!