Your friend has lupus. You can see she's in pain and you say, "Are you OK?"

She says: "I'm fine."

Why is she lying to you? Why is she minimizing what's going on? Doesn't she trust you?

I know why I do it. I asked on social media, and found that a number of other lupies have similar reasons to mine.

We do it for ourselves, because:
we don't want to always be talking about lupus. It never goes away, but we still want to try to stop it from taking over our entire lives.
sometimes it actually feels worse when we acknowledge it.
we just want to do and say "normal" things.
because if we start to talk about it maybe we'll just never stop and we'll be talking about pain, fatigue, memory loss, confusion, rashes, fear, drugs and all the rest of it forever.
because sometimes what's happening is something that we really can only talk about with someone who's been there (which is where lupus support groups are amazing.)
because sometimes we feel like being with someone and not talking about lupus is the only time we wake up from the nightmare that we're living in.
as one lovely lupie said in answer to my question; "I am afraid I will become lupus."
because if we admit we're in agony, you will say "well, let's go home", when what we really desperately want and need to do is stay out and have a little bit of fun (and yes, we know we'll pay for it later, sometimes it's worth the cost.)
we don't want to draw attention to ourselves.
we don't want to be the person who's always complaining.

We do it for you because:
we feel like all we ever do is complain to you. Sometimes, we want to be there for you, not have our friends and family feel like they always have to be our carers.
it's bad enough that we feel bad, making you feel bad about it won't make it any better.
because we're just so sick and tired of lupus that we're sure you must be too.

We do it to avoid (I have to stress, that I don't have much of this at all - very few people have judged me badly simply for being sick, I'm working on other lupies' experiences here):
being labelled as a hypochondriac, or told we're faking it.
being rejected.
being condemned by people who just can't understand how we can be well one day and horribly sick the next.
losing friends and being abandoned.
getting stuck in the "but it's not like it's anything serious like cancer, get over it" conversations that leave us trying to explain/justify having a chronic, life-threatening, incurable disease.
unsolicited, uninformed, and incredibly unhelpful advice.
people not believing in the symptoms they can't see.

When we say: "I'm fine" or "I'm OK", it usually means something like "I don't want how I'm feeling to be an issue right now, let's talk about something else." 

Catch up

Catch up time!

We had a wonderful Thanksgiving Day weekend all our kids and 12 of our 13 grandchildren. I love family time! Everyone got to see our "new house".
I am still enjoying the house being renovated! It's so much easier to clean with the wood floors vs the carpet.  Love it!

It's now been 7 months since my knee replacement.  My knee is still stiff especially when I first stand up or leave it in one position for a long time.  Getting out and in Ricks truck causes frequent outburst of screaming as it really hurts!!  I saw my Orthopedic Dr last week, Dr. smith.  I was worried what he was going to say because I had nothing positive to tell him....I felt like my surgery was unsuccessful....but when I told him, he said I am slow to heal because of the Lupus and it could take a year or even 2 years to totally heal...really?!?!?   He said I will be surprised one day will go by and I won't even think about my knee then 2 days and 3 days...I can't wait because right now it is everyday several times a day.  But I was stoked to hear him talk to me in a positive manner.  It lifted my spirits because I had been so down about the pain still being there.

I saw my Rheumotologist .  I still have the hip and shoulder joint pain as well as my hands and of course knees and I don't have a lot of energy but I guess that is just how it will be....she put me back on Cellcept because of skin sores. They aren't real bad but we don't want them to get bad.

I have been riding 2 miles a day 5 days a week on my stationary bike. My knee gets warmed up it works better. I am still on Tramodol for pain which also covers my Lupus and Fibro pain as well.  Most of the time it's enough.
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Rick is still healing from his broken pelvis.  It's much better but physical work makes it sore so he has to pace himself. He was able to get some hunting it the last month of hunting season.

We had a quiet Christmas this year but we expected that to be the case.

God blessed us with some unexpected money so I could get a vehicle without a car payment.  It's a Mitsubishi Montero sport.  It's older but I love it regardless and especially no monthly payment.

I am hoping to get back in choir soon.  My biggest challenge is standing for long periods of time.  I also hope to get on our widows ministry team where we reach out to widows in our church. My moms church did not have this and it would of been a blessing if they had not only for her but for me too.

More to come....both hands and fingers are numb..I can hardly feel them as I type....

HAPPY NEW YEAR 2014!

My first ADVOCARE Meeting/ Mixer.

My first ADVOCARE Meeting/ Mixer.  Heather is a distributor and although she has been doing it since March I have not felt like I could approach or add anything new to my already crazy life.  (To see about my year read my blog, I will not go into it on this page.) I was excited and impressed with all the success stories not just about weight loss but how to get healthy, how to get rid of joint pain and to sleep better.  I sat there and listened I was thinking I want all of it...How do I know what to take and when and etc.  I didn't realize Heather was going to be my coach and what I was thinking was weight loss but what she was thinking was getting me out of pain and healthier, go with me to my Rheumotologist and ask about the 24 day cleanse and then starting on weight loss which will also help me be more successful through the holidays.  I'm all for it and can't wait.  If you want to know more about it let me know.  I can get all the answers for you!  My prayer is my husband will jump on board too.  There's products for baby boomers, products for men, products for women, products for teens and for joint pain and some to help you sleep and just too many to remember....I'm going to another mixer Monday just to hear more success stories. Who want to go with me?!?!!

Home, Hubby Healing and Happy Happy, Happy.

Almost 5 months since knee replacement.  In a nutshell my knee is still stiff especially when I first stand up or leave it in one position for a long time. I can barely get a sock on that foot because of the way I have to bend it. Yes I did go to PT and graduated.  If I can get back to a regular routine I am sure the bike riding will make it feel better.  Once it's warmed up it works better. I am still on Tramodol for pain which also covers my Lupus and Fibro pain as well.  Most of the time it's enough. I still doubt I will get my other knee done EVER as this was for sure the most painful surgery I have ever had....

We returned to our house on October 22nd. YEAH!!!!   I was deliriously happy.  We practically have a new house.  Love it.  Still working on some paperwork for insurance and I expect today to get the touch ups and etc to be done for final inspection. YEAH!!!

October 12th Rick was cutting branches off the trees so our HOA will be happy....We love trees.  Our subdivision is called WOODlake.  But grass won't grow in shade so they were threatening us to grow grass or pay the $25 a day...Really?!?! So hubby was cutting branches so we could get some sun in and at aprox 20 feet high he fell and broke his Pelvis.  I'm sending HOA the bill.  He would never of been up there had they not threatened us..  This is November 1st and I don't see that he is doing much better, a little but still has to use cane, pain pills and sleep in recliner part of the night.  Hurts when he turns over and yesterday he said he could feel the bone moving and his left leg was feeling uncomfortable.  He saw an Orthopedic Dr Monday and basically it's a slow healing do what you feel like doing kind of break....

My Lupus is pretty much under control.  I still have the hip and shoulder joint pain and I don't have a lot of energy but I guess that is just how it will be....

59th birthday this week....I can't be that old?!??!?!?!?

Graduated Physical Therapy but still a long way to go...

Graduated Drayer Physical Therapy on Friday the 14th of September. Yeah!
I still have to exercise.  I have 6 exercises and I am still doing water aerobics several times a week.  I was given strict instruction to do the exercise because my knee could still freeze up....I was told it would feel much better at 6 months and all well by a year.......good Grief....This really was the WORST surgery I have ever had and I have had a few...

We are STILL at the hotel.  The insulation under the house has been replaced.  I believe the air conditioner has been fixed.  The walls and ceilings have been fixed.  We picked out all the paint colors and there is some paint on the walls at the house.  We met with the Floor man last week, I am very excited about what we picked out. We meet with the Cabinet man tomorrow and that should be all we have to pick out.  Hopefully they will start in full gear soon.  We have been at hotel since August 8 and it is now September 16th and there is still so much to do...we are thinking that maybe we should move into the camper in our back yard which will save gas money for sure...It would be a lot easier with Marley to just be in the back hard instead of alone in the yard or stuck in the hotel. She needs more exercise....decisions...decisions....

Lupus is pretty much under control.  I still have the joint pain and I don't have a lot of energy but I guess that is just how it will be....

More to come...

30th Anniversary, Our Welcome Home and 2 Months Post Op

30th Anniversary, Our Welcome and 2 Months Post Op

We had a very nice 30th Anniversary at the lake house.  We left on Saturday morning and got there unpacked and just relaxed the first evening.  The 2nd and 3rd day took the boat out but it was just too hard for me to get out so we spent the 4th day floating around in the lake at the beach area.  The evenings we either went out to eat or grilled out.  We were tired and ready to go home on Wednesday.  After cleaning the lake house and packing the car we were ready for home and a nap!

When we walked in the house our hearts skipped a beat as all we could see and hear was water running out of all our ceilings ....I was screaming turn it off!!! And he was running around trying to find the cut off which was under the house all the way to the front....Our home is completed flooded! Kitchen flooded. Up to ankles in water. Ceiling soaked. Cabinets destroyed, all wallpaper will have to be removed. Foyer flooded. Living room flooded. Carpet soaked all way to fireplace. Hardwood and carpet all has to be removed.  also the drywalls will have to be replaced all over.... Catwalks soaked. Upstairs bathroom floors, sink cabinet  and playroom and guest room floors wet as well as the walk in closet with all Christmas decor and trees.. 1/2 bathroom downstairs soaked..all wallpaper and floors removed. Closet downstairs. About 5 inches of water under house. Horrible. It's gonna be up to a month to be fixed. We Are now living at Hawthorne Suites on Centennial Olympic parkway about 13-15 miles from home. it's very nice but of course there is no place like home.

We go back and pick up things we need as we realize we need more and more items to live  in a hotel for a month...


What a week...no rest for the weary...last thing I want to do is go to Physical Therapy but....I know I must...last Friday I was at 113 degrees on the range of motion on my knee.  My goal is 125-130.
Both knees are really hurting this week as there has not been time to rest.....

More updates to come.....

7 Weeks Post Op

My Physian Assistant hinted I may have to go in for manipulation under anesthesia if my range of motion isn't between 120-130 by 1st of September (Its 103 right now.)

I work with 2 Physical Therapists and a Personal Trainer and they said no way will I have to go back in for manipulation under anesthesia!! 

I'm getting a stationary bike today. Do water therapy twice a week and PT 3 times a week... I am woman hear me roar!!!

So this week some really cool friends gave me a stationary bike it also works your arms which makes a fan blow on you😆

I am doing water therapy at our pool at least 2 time a week and I am really working it hard at PT.  The downside to this is I can barely walk in the evening.  I haven't even had an appetite at dinner so haven't ate in a few nights and I'm losing sleep because I can't get comfortable.

Soooo we will see how this goes.  I'm getting ready to go to PT where they will hopefully measure me today and Ill update if I have progressed this week.

ROM (Range of Motion) is 108!! Yeah!!! Went up 5%.
Working to get to 125!!
Was 70 after surgery!!