Thursday, May 31, 2012

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.

Tuesday, May 29, 2012

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.

Sunday, May 27, 2012

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.

Thursday, May 24, 2012

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.

Tuesday, May 22, 2012

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%.