This new lifestyle of mine is finally beginning to work.  It took an hour this morning to get dressed.  Shower, exercises, clearing, leggings, then clothes.  I will have to do the clearing and exercises at least once more today.  Also the massage which means taking the leggings off and putting them back on.  Unless I wait til bedtime to do the massage.

Mike and I have been discussing this a lot.  There is another piece of equipment they are trying to get approved through the insurance.  It will take another 2 hours everyday to complete the therapy with that.

On a day that I was feeling miserable with all this, I told Mike I just can't say "thank you" to God for any of it.  I can't find a way to praise Him for this.  Especially when it takes a good portion of my day dealing with it.  It is ugly, cumbersome and hot.  Plus I have more to wear!  You know those compression pants the football players wear?  Yep, I need a pair of those in my size.  But back to this.  I can sing when I have to, but it is not joyful.  I've prayed and hollered and prayed some more.  But I just cannot praise the God of my life and salvation for this condition of lymphedema.  I don't need another thing to add to my ever growing list.

Then Mike, my dear, sweet, loving husband responded.  He told me I don't have to praise God for this storm in my life, but praise Him IN this storm.  I don't have to thank God for my conditions, but thank Him for the good in my life.  I know, I've been a Christian a long time.  I should have known this.  I should have been able to see it myself.  But I didn't.  I think I was just too angry.

I sing now with joy in my heart because I know sometime in the future God will show me all His glories.  I look forward to Heaven.  I'm not ready to go there, but I look forward to it.

I will praise Him - IN THIS STORM, not for the storm.  I WILL thank Him for all the good I have.  I don't have to thank Him for the myriad of health issues, but I can thank Him that my heart is healthy.  I can thank Him that I don't have cancer.  I can thank Him for my children, grandchildren, my mother, and more than those, I can and do thank Him for my husband.  He is truly my helpmeet.  He holds me while I cry.  He laughs at me when I am goofy because of my meds.  He helps me with my compression gear when he is around.  He helps me with the household chores that I should be doing, but can't.

Lord God above, thank you so much for giving me Mike.  You knew the kind of man I needed long before I knew I needed him.  I love my husband evermore everyday.

This whole week has been difficult physically and emotionally.  I thought it was just the weather and air pressure.  Of course the stress and mess from the compression garments and my therapy (or lack of it this week).  But today's activity put the last connection to it all.

It was 3 years ago that my dad was assaulted and his arm broken while he was in the hospital.  Today was the final payment of that settlement.  We officially dismissed our lawyers today.  Do we feel better? No. Not at all.  We are glad and relieved that it is over.  But not happy in the least. My father died 15 months ago.

One thing we pray for is that our fight is making a difference for others.  My dad had family to fight for him and his rights to be treated properly.  But there are many, many others that don't have that resource.  I hope we made a difference.  I hope we shouted loud enough and long enough that others will not be mistreated and abused.

I sometimes wish I could check up on them in the future to be sure the changes are continued.  If you have a loved one in the nursing home or hospital, please don't leave it up to the staff to take care of them.  You MUST check on them continually.  Make sure they are not being abused.  They may have no one else in their corner.  I'm glad I was there for Dad.  It just wasn't quite in time.  There was nothing I could do to prevent his injuries, but I did catch them and forced the hospital to admit the liability and make changes.

So much has happened in the last 3 weeks.  I am beginning to accept and maybe even appreciate my new bindings known as compression garments.  Not totally, but beginning.  I am finally comfortable wearing my slacks to church.  Sometimes I still hesitate.  There are still some things I am trying to adjust to...compression capris, exercises 3x daily, self clearing 3x daily, and massage 3x weekly.  I am not against those things (except maybe the capris), but it all is a huge change in my daily routine.  I have all but quit going to the YMCA.  Mostly because it is time consuming to get dressed again after the pool.

I only do the exercises once daily right now. They are painful as any new exercise routine is. But they are getting easier. Mike does them with me at night and that helps. I hope to add the 2nd daily session by the end of this week. Maybe by the end of the month I can add the 3rd session. The clearing of the lymph glands  is still once daily most days. I need to push myself to do it 3x daily. That part is forgetfulness  usually.  This is the first week that we are to do the massages 3x weekly. Tonight will be the 3rd time.  This takes an hour.  The clearing takes 15 minutes or so and has to be done each time before the garments are put on. Then 2 more times in the day. Mike helps once daily then I do the rest. The arthritis makes this a little difficult to do by myself so it takes a little longer for me.  But I am adjusting.

God promises I can do it all...with His help and guidance.

I have also been doing taxes and working on my website.  And scheduling jewelry shows for the fall.  I have a show this Saturday here locally, one next month, and one in September. I am also planning to put a few copper pieces in a shop in Claremore, OK later this week. I have rings in a shop in Bethany, OK right now. I am praying for good sales to be able to purchase some high dollar tools and a workbench.

Today was a great day in the house of God, church.  Afterward, I took a nap as usual for Sundays.  It is also the day I treat myself. I take all the compression off and leave it off until Monday morning. Yes, the swelling comes back, but my legs are free for a few hours. :D   That makes the end of Sunday a great day to follow the great morning.

Please visit my website too.  It is still under construction, but partially functional.
http://www.inspiredwirejewelry.net
www.inspiredwirejewelry.etsy.com

Been busy on the computer this morning.  I finally did my daughter's 2011 taxes.  Glad that's done.  Now, I can do mine!  Eeek!  Yuck!
This afternoon was another therapy session for the lymphedema.  I am just so thrilled to have this condition.  Yes, I am still talking about it.  It will never go away.  Neither will most of all my health issues.  They are here to stay.  I am trying to adjust, but it is taking a lot of time.  I am still learning about it all.  


I have lost another 1.4" from each leg.  That makes a total of about 14.5" each leg.  Up to the knee.  Oh, it's exciting, but not THAT exciting.  It only stays off if I continue wearing the solaris garments.  Forever.  Plus my new shoes aren't exactly what they wanted me to get, but at least I have some that fit.  


The therapist reminded me today that I need to do the clearing of the glands about 2-3 times daily.  This usually takes about 15 minutes.  Getting the leggings on takes about 15 minutes when I am by myself.  Just 5 if someone else is doing it.  Plus, the massage is going to be 3x weekly. This takes about 1.5 hours each time.  To go forever!  


The solaris leggings are not your everyday Tedd hose or the 20/30 compression stocking you find at the local medical supply.  NO.  They are COMPRESSION ARMOR!  Plus the fact that my legs swell anyway once the garments are on.  You know, pressure from the garments fighting pressure from my body.    I am not happy with this at all.  Don't think I ever will be.  I am trying to get used to it.  Not an easy task.

And the therapist also reminded me I am supposed to wear a light compression stocking to bed every night.  Now, how is that supposed to be sexy?  Forget comfort!  I just haven't been able to comply with that part yet.  I think my legs really need to breathe some time or another.  Maybe I will try it later.  Much later.  Maybe. 


Well, now it's time for me to stop venting and get ready for church.  See ya later, if you dare come back!  

In 1976, I meet a wonderful young man. Of course then I didn't know how wonderful he would turn out to be.  He asked me to marry him four times before I accepted.  Marriage was a scary commitment.  It is to be life-long with no exceptions except death.  I wanted to be sure.

We married in 1977 and have grown closer to the Lord and each other through the years.  Some were very hard. Some were exciting.  All were learning experiences.  But we have learned most of all that we love each other without exception.

We have four wonderful children.  They are all adults now of course.  But they all love the Lord.  They have given us seven beautiful grandchildren to love here on earth and a few already in Heaven.

Through the 35 years we have been together, Mike and I have seen many things.  Health, sickness, loss, tragedy, fun, friends, more family, and through it all, a peace from God.

There are many things I wish were different...my health most of all.  And some of the past.  But, since I can't change any of that, I can look to the future of many more happy years together.  Mike is the love of my life.  He is  my best friend, lover, partner, father of my children, husband, pastor, and so much more.

I pray my children will have the same kind of love for their spouses that we have for each other.

God Bless.

Days like today I hate the pain.  It is so difficult to do simple household chores without pain.  Bending causes back pain.  This is not from the lupus or arthritis.  It is degenerative disk disease, torn disk and bulging disks. I can't sweep at all and vacuuming is difficult.

I don't like being dependent for these things.  But my house needs cleaned.  I don't like waiting for someone else to do it in their time.  When I want it done, I want it done now. Or at least soon.

I need my kitchen floor cleaned.  I know she will do it, but I've waited all week.  She's been busy, but I am ready for it to be done.  Maybe I will take pain meds, let them work and just do it myself.

Can't stoop or kneel either.  No squatting. How in the world am I supposed to get it done?

Days like this aggravate me with me.  Maybe God is trying to teach me to rely on Him as well as others.  I am after all, at His mercy.  And the helpfulness of family.

Low fevers, body aches and pains are a normal part of my life.  So, I have learned to ignore most of them.  My OT is a time of relaxation for me.  Boredom for Mike.  It takes about an hour and a half for the therapist to do the clearing and massage.  Everyone is noticing the difference.  I guess I am sceptical.  I do see the difference, but am wondering how long it will last.  She said it is a forever condition.  I am just hoping the compression garments are not forever.

I have lost 25" overall in both lower legs.  I have lost a few pounds as well. Not as many as I had hoped.  But maybe that is to come yet.  I am becoming "softer".  That means the protein is softening to break up and flow properly.  That is very good.

I keep hearing from people how they are inspired by me.  I also hear from several that keep up with me on Facebook and this blog.  This really boggles my mind.  I don't think I am anything special.  Others have pain and move on with life.  I am not the only one.  I don't mind being an inspiration I guess.  I mean, if God can use  me to help someone else, then that is a good thing.  A God thing.

I look to Job.  I think about his losses.  His boils.  I can't imagine having boils from head to toe.  One boil is enough pain for any one person!  It can't be "popped" like a zit or it will spread.  But, Job had boils covering his body.  No wonder he sat naked in the hot ashes!  The warmth most likely helped "ooze" the nasty stuff out of the boils and ease the pain.  And maybe help hid the odor of infection.

Then I am reminded of the sufferings of Christ.  His were "short lived" in that He died!  But He also rose again.  But to be beaten, humiliated and put to death.  Personally, I am NOT ready to die.  I am not afraid to die because I know I'll be in Heaven.  No more aches and pains.  No more fatigue and exhaustion!  But, I'm not ready to curl up and die.  I don't think God is finished with me yet.

I have also learned we cannot compare sufferings.  "I hurt less than Jane Doe."  Or "I have more issues than that person, but you don't see me whining!"  God gives us each just what we can deal with.  But we can never do it alone.  We need His help and peace.  Sometimes I think God must think I can handle a lot!  Because, sometimes I feel sorry for myself and think I have too much wrong with my body.  Usually those are days I am most tired and achy.  Usually a dose of meds will cure that issue.  And I am so very thankful for the doctors God has put in my way.

On a different note, I finally finished and am satisfied with the Lupus Awareness Butterfly pendant I have made.  How about I show it to you?  Tell me what you think.  Also, please, feel free to comment or ask questions.  If I can help, that is why God is allowing me to go through this.  In my humble opinion that is.

Have a blessed day!

I am really happy to have my family home.  They came in last night all worn out, but we still had activities scheduled.  I think we went to bed around 11 pm and crashed.

Today, I once again, unloaded the clothes from the closet. We pulled out the pipe rod.  It is nearly 8' long.  And bent in two.  Mike is going to ask a welder if he can straighten it tomorrow.  In the meantime, all the clothes on my bed must now be moved....again...to the couch this time.  I really prefer to sleep in my bed than on the floor.

The other projects are complete and look great.

Next week I have a lot of paperwork and computer work to do.  I am hoping to get time to work on some jewelry orders.  I have a couple repairs to do and a larger order to do.  I need to also look for shows for the Summer.

I go to therapy on Wednesday.  We will see then if we are ready for them to teach us the massage for my legs and the lymphedema.

For tonight however, I still need to make dinner for tomorrow.  Today was a good day.  And God is always good.

I have enjoyed having my oldest granddaughter, Jessi, over yesterday and today.  We have done everything we could for fun, movies together, lots of food, soda, more food, more movies, and lots of laughs.  We have done a few projects too.

I took my new leggings off too early yesterday and put them on too late today. So, now my legs have started to swell again.  It is just going to take more time to get used to them. And to allow time to put them on.

I want to make sure my readers understand, when I argue with God, it is not in disrespect.  Nor am I alone in doing so.  Great men of the Bible also argued with God.  Some even "changed" God's mind when He was angry with Israel. I do not feel guilty in my conversations with God.  I have peace and release after our discussions.  Some of my decisions have been very difficult of late. His still small voice of direction have been comforting.

My husband and daughter have both been gone to church camp this week.  I have enjoyed the quiet house and the opportunity to get this accomplished.  However, one project, finished last night, has had a catastrophe this morning.  But there is nothing I can do now except wait for Mike to come home and help.

Well, now it's time to get off the pc and get to work.  I have about 4 1/2 hours left to finish everything before they get home.  Plus enough time to pick up Mom to bring her here for SNO.

Me and Jesus have been having some heavy duty talks lately.  Mostly me letting Him know how I feel about all the changes in my body and what I have to do to keep them under control.  I am voicing my feelings and opinion.   We had a really long talk in the shower this past Sunday morning.  I was almost late to church.

I do most of the talking/complaining/yelling/crying and such.  But I do listen to God in the background. That's where I put Him.  But you know He speaks in that still small voice.  I truly believe it is ok to get upset and voice my feelings to Him.  After all, He already knows my heart.  Why should I try to hide them from the One who knows all?

What was so bad Sunday?  Well, it began a long time ago.  I was raised to wear only dresses to church.  I know not everyone feels that way.  That's ok.  But that is how I was raised.  Personally, I do not feel it is wrong for a woman to wear slacks to church.  Modesty is the key in anything.  I do wear pants to activities.  I want to wear pants in the winter when it's freezing cold outside.  Especially on Wednesday's so I don't have to change clothes.  But I don't wear pants to church.  I also don't wear pants to services because I do not ever want to offend anyone, male or female, in our church.  There are some who wear pants to services.  That is fine.  They are always modest.  BUT, for me it is a big deal for me to wear pants.  In my heart I know it is not a sin or wrong in any way.

But I have had such struggles emotionally this past month.  Fits of anger.  Fits of crying.  Depression.  And then to go to church and pretend it is all ok.  I am not good at pretending, so I don't try very hard.  Folks read right through me.  Being at church makes me happy and things are 400% better when I go and visit with everyone.  And sometimes my husband preaches right to me!  He knows what I have been struggling with too. I also would never do anything to offend on purpose.

I tried wearing a skirt the first night with my new leggings.  It kept getting caught up on the fabric.  A slip might help, but it has lace and that gets caught up on the fabric as well.  I am NOT making excuses.  Because I am not worried about strangers opinions of what I wear as long as I am modest and respectful.  Strangers do not know me or my struggles.   Though I would not offend them on purpose, it is not their business.

Sunday, back on track, I fought with tears and emotions once again.  Jesus and me had a long, emotional talk while I took a long hot shower. Showers calm me. I cried to my Lord.  I prayed for wisdom and peace.  I cried some more.  I prayed some more.  The water turned cool. I got out, dried, and as I dressed, I thanked the Lord for the peace He gave me.

I put on a pair of brand new dress slacks, top, and my clunky tennis shoes.  I prayed as I drove the whole half mile to church.  I asked the Lord to please give our members grace and mercy as well.

This is Wednesday, I am putting on a pair of dress pants and going to church.  Hope to see you there.

I am slowly getting used to what is going on with my body now.  God and I have been having a lot of discussions on this.  Mostly me ranting.  But He is patient and listening.  Then He speaks.  I listen and sometimes I don't want hear. But, deep down I do.

I don't like this body of mine for sure.  But it is the only one I have.  I am trying to take care of it.  The emotions lately have been out of sight and through the roof.  God made me an emotional being, so maybe it is okay to express my emotions.  I have been careful not to aim them at anyone, even God.

When I hammered my finger, accidentally, it was because of my anger.  I shut my family out because of my anger. I lost sleep because of my anger. I ate in excess because of my anger. Then in my depression I refused to eat.  I lost sleep in my depressed state. I again shut out my family in my depression.  I couldn't find a song to sing because of my extreme emotional state.

Did I say that God and I have had long talks?  Even in the shower.  In fact, I talk to Him a lot in the shower.  The water is cleansing and so is the talk.  There is no pretense in the shower.  It is literally Just as I am!  He tells me He loves me and I shake my head.  "Why?  Why would You love me? I am nothing. I can't even control my own body.  How can You love me when I don't love me?"  I still don't understand why He continues to love me.  I am not anyone special.  I am just me.  But, I know He DOES love me.  He created me and made me what I am and who I am.  I have to just accept that and take it as it is.  He has to take me just as I am.

I did find a song to sing this week.  "God Wants to Hear You Sing"  I started out Sunday morning in church to sing, with my cream colored, ragged compression tubing on my legs and my black sneakers in my dress.  I stood there and talked of Paul and Silas in prison singing to prove to the world that they would trust God no matter what came along.  I messed up. I lost my timing and had to start over on the song.  Go figure.  I made it through.  Even if not everyone in the congregation understood the full meaning of what the song meant to me, I did.  So did God, and my husband.

I still am having emotional ups and downs.  More ups now than downs.  This is a good thing.  This is a God thing.  In my heart, I am singing because I want the world to know that no matter what, I trust God.  Even when my face doesn't show it.

Today I am really hating my body. I hate the fact that it's incurable. I have to live with everything the way it is the rest of my life. It might get better to a degree, but only after spending hundreds of dollars, long hours of exercise and therapy. Daily this and daily that.  Even 3x times daily. It will never go away. If I don't do the daily routine of drainage, exercise and 24/7 compression from the waist down, including shoes, then it will get worse.

Mike thinks I need to get over the depression from it.  Maybe I will, but not right now.  We are even finished finding all that it entails.  There is more tomorrow. Being fitted for the body armor from the knees to toes. Then having to find shoes to fit over it that cover the feet completely. Then finding someone that carries compression clothing like capris in my size! 

Buying expensive garments that have to be replaced annually or at least semi-annually.  Doesn't that sound fun.  The good news is I am not dying of cancer or loosing a limb.  But I feel like I am in a physical prison.

Everyone is telling me to loose weight.  But they don't tell me how.  Yes, I know. Diet and exercise.  But that won't do it. I've tried. Several times. All that does is make me gain more weight.  Exercise is almost impossible.  The water is fine for balance and flexability.  But it does nothing for strength or weight lose. I can't go outside. I can't run. I can't walk more than a few minutes. How in the world am I supposed to lose weight?

Like I said at the beginning, I hate my body.  I feel like it is betraying me.  Turning on me in fact.  The only time it will be whole is in Heaven. I wish the Lord would come soon. He wants me to praise Him during this mess. I don't think I can right now.  I really don't and that makes me really sad.  I feel defeated.

I'm a bit achy tonight. Well, a more than a bit.  Mostly from the daily swelling. My fingers are really stiff, especially on my right hand.  The fingernail on my left index finger (the one I banged with the chasing hammer) is probably going to come off.

This has been a difficult week.  I've been emotional about my legs and weight.  I was going to try to diet....again. But the 2nd day I called it quits.  Mostly because I was angry with my household. They were sneaking donuts I had bought for my grandsons. My DH and DD were supposed to be dieting with me. I decided if they weren't going to try or care, then neither would I.

I know, don't give up. I will try, but I am not going to deprive myself either.

Today, my daughter and I had a clash of who is in the shower first.  I let her, but I think next week it will have to be me.  We both ended up being late.  It is just a timing issue that needs worked out.  But because we were running late, I didn't wear the leg tubing or my tennis shoes.  Not a good thing.  At least I was reminded of why I am going to have therapy and wear "body armor" on my legs. I sure hope and pray this works.  That it is worth it all.  I am still not convinced.

I begin therapy on Tuesday this week.  I have 8 sessions. Plus we will order the leggings. Oh how I  hope this works.  It is supposed to retrain my lymphatic system to work again and properly.  Lymphedema has no cure, but is treatable.  I have seen photos and people whose legs are ginormous!  I don't want that for me.  That is probably why this week has been so hard.  I don't want saggy baggy elephant legs, but the "body armor" looks like torture.  I don't know which is worse!  I keep asking God to help me with my attitude.  Not sure how He's gonna answer that one. Do you?

I will likely have to buy new pants and shoes.  Again.  If I had a sewing machine, I may just make my own pants.  I used to sew very well. I could get the color and fabric I want that way.

On a different note, the Bluebird Pendant is finished. Now to photo it and post it on the web.  Here is a picture.  Not a great one, but you can see it okay.

Today's lupus fact: Only 10 percent of people with lupus will have a close relative who has lupus or may develop lupus, and only five percent of children born to a mother with lupus will develop the disease.

I am really tired this evening.  Tried to figure out why. Slept til 8 this morning. Did the dishes. Folded a load of towels. Went to lunch and shopping with Mike and Rachael.  Then went to get silversmithing supplies while silver is down a little.   

I think it is really from being in and out of AC and the heat today.  My sinuses are swollen and my legs.  The tubings on my legs are tight and hot. I am really trying to wear them all the time, except in bed at night.  I just don't tolerate anything on my legs in bed. 

I've also been working on my Bluebird pendant.  Hopefully it will be finished tonight. But hubby wants to clean the house instead.  bleh!  Tomorrow is a full day of activity.  Two of our grandsons are coming to stay the weekend.

In that I am also a jewelry artist, I have designed and made a piece of jewelry representing lupus awareness.  The Butterfly pendant is made with sterling silver backplate, awareness ribbon of twisted SS wire, 2 teardrop shaped amethyst (purple is the designated color for lupus ribbons) and 2 accent stones. I believe they are chacedony, but am not sure.  The seller didn't label them.  But, here is the finished piece.  I am pleased with it.

Obviously it has been a while since I have blogged.  Maybe this time I will make it a habit.

I was asked by a couple different folks to blog about my life with lupus. I will do my best.  This will also be about everything in my life.  My God, family, fun and such, including my health issues.

Today is a beautiful day outside.  But, I can't really go out to enjoy it.  I leave the house to run errands, get to the doctor, church and family.  I do not go out to play very often.  The sun is an enemy to me.  In order to go outside to play and enjoy I need to wear heavy duty sunscreen, long sleeves, hats and should wear gloves. Should.  My sunscreen of choice is Aveeno, 85 spf.  I use a baby block stick of 55spf for my face.  This keeps the sunscreen out of my eyes.

Even with all that protection, it is possible to suffer the consequences for a few days after a few hours in the sun.  Example, I worked an outdoor show for selling my jewelry the first Saturday of this month.  I stayed in the shade, had on all my sunscreen and a hat.  It was in the upper 90's* so no long sleeves.  By the end of the day my body was very swollen.  The next day I was exhausted and still swollen.  The next was worse yet.  And by Wednesday, I was miserable.  Everything was swollen and hurting.  That is just the lupus.

 I also had to contend with the lymphedema that I've just been diagnosed with.  My legs and feet have been swollen for 2 years.  It was just recently found to be lymphedema.  Lymphedema is chronic edema due to improperly functioning lymph glands and system.  I am pretty good at taking things in stride, but this diagnosis really hit me hard.  Again, there is no cure. They say it is manageable. I was hoping for a little pill and be done with it all. NO!

I have to do massage therapy.  That part really doesn't sound bad at all!  I happen to enjoy massages.  This massage is to help drain the lymph glands.  I also have to do certain exercises daily.  No big deal, those are easy.  The next part is not so pleasant. In fact I got angry.  Not at anyone, but at what I have to wear.  I call it Body Armor!  That's what it looks like.  Each foot piece is separate and each part for the legs.  At this point I only wear the parts covering my feet and calves. This is NOT Tedd hose or compression hose.  This is "kevlar" for the legs.  It is black and velcros in place.  It must be worn 24/7/365 for however long they say.  Even to bed.  Then I must wear shoes over the foot part.  Shoes that go up over the arch of my feet.

Now, if you know me, you know I am not a lean person.  I am "well nourished".  My sweet hubby still finds me beautiful.  But you add size to CPAP mask and body armor on the legs and, well, let's just put it this way, there isn't a lot of appeal left.  You know what I mean?

I am currently wearing tubing on my legs until the armor is ordered and arrives.  I tried to wear it to bed, but I really don't like it.  I prefer to feel the coolness of the sheets against my skin, not the warmth of wrappings on my legs.  I know, I'm picky.  Yes, I know too, "if it helps.....blah blah blah!"  I'm not convinced yet.   I will however, give it a good try.  I will not guarantee to comply 100%.