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.

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

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 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.

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.

My goodness it's been a long time....

I can't believe I haven't been here since Dad passed.  It's been almost 5 months.  Mom is adjusting well. She has her moments as we all do. But to know he is in Heaven with the Saviour is the best knowledge and hope there is.
What have I been doing?  Hmmm I've been busy for sure. I would have thought after retiring 5 years ago life would be simpler. I guess it is in that I don't have a time clock to punch in and out every day. But it is busy and many hats to wear.
I am now getting the full dose of Benlysta for my infusion each month. The drug was approved by the FDA this last Spring.  That is great news. And a gift from God. I don't have to pay for it until the study is complete in 2016.  That too is a gift from God. The drug is $1000 per dose and 1 dose per four weeks. If insurance pays, it is likely to only pay at 60%.  The only bad thing I have noticed about this drug is that it only lasts 3 weeks and can only be taken every 4 weeks. That leaves 1 week of problems.  I usually have to take twice as many pain meds during that week.  And twice as many naps! 
I have had a sleep study recently as well. Almost a sleep study.  We didn't quite get to finish it. So we are waiting for the insurance company to approve the rest of the tests. I know I have sleep apnea, but they are testing for other disorders as well. It appears I also have hypnogogic hallucinations that are a sleep disorder.  And RLS.  But I haven't seen the report yet.

The neurologist, also new, said I have mild neuropathy in my big toes too. Just something else to add to the ever growing list.
We do get to take a vacation this month.  YEAH!  The first in 6 years.  It will be a working vacation, but I think we'll have a great time.  We're looking forward to getting away.  Hopefully the east coast hasn't washed out to sea by the time we get there. Our daughter is trying to figure a way to hide in the trunk of the car until it is too late to turn back. However, I think we would notice an extra passenger.  We are taking Mom part way.  We will be dropping her in OH so she can visit friends and family.
I think that will have to do for tonight.  See you all later!

How do you do it?

I have had several people ask me "how do you do it?" And now they have started asking Mike. So, I thought I'd try to explain it here.

I have Lupus, osteo arthritis, rheumatoid arthritis and several other health issues. Lupus and the arthritis are the ones that affect (or bother) me the most. I have pain and fatigue nearly everyday. But, I don't want to just sit back and wait to die. Who would? I exercise in the pool at the YMCA 3 times a week. The water helps a lot to keep moving and sorta flexible.

The main thing is God keeps me going. He encourages me and comforts me. He has also given me common sense and some pretty good doctors. The doctors then give me the medicines I need to cope with my diseases. Remember, there is no cure for Lupus.

I am in a study for a new medicine for the Lupus that really helps. I get it every four weeks. The med only works for 3 weeks. The week in between? Well, let's just say I try to not do anything. I sleep a lot those days and take a lot of pain meds. We are hoping the study med will be approved by the FDA soon and that I will be able to get it thru Medicare or the manufacturer. And to get the infusion every 3 weeks instead of 4.

Remember, God gave me common sense too. I know when I am "DONE" for the day. Mike knows if I tell him I am done, then that is all I can do. I might as well have a seat or go to bed. The common sense comes in to know when you are reaching your limits and either slow down or stop. What good will you be to the rest of your family or yourself if you over do it? I know what I need help with as well. So, I am no longer afraid or embarrassed to ask for help.

How do I do it? I have a loving God, a wonderful and supportive husband, good doctors, good meds and common sense.

Hope this has helped.

How do you fight depression?

Having more than one chronic illness and chronic pain, I am susceptible to depression. I have known this, but it was brought to my attention again by my primary doctor. She suggested medication. I politely told her...not yet.

Yes, I do get depressed. Everyone does. I probably more so than most normal people. So why not take the meds? After all, what is one more pill? It is one more pill! I get depressed when I hurt, or am so swollen I can barely move, or when I am exhausted. These things happen every day. I also get depressed when we have financial trouble. I get depressed when everything hits me at once.

How do you personally handle your depression? Got any secrets to it? Do you take the drugs? I mean, many people have to. They wouldn't be able to function without the medication. That's ok.

Personally, I have found a number of ways to handle my depression when it hits hard. As a Christian, the first thing is to pray. But that isn't the end of it.
1. Pray
2. I have my grandkids around. They are so happy and lively. It wears me out, but it makes me happy!
3. Church. Sometimes it is difficult to get ready physically and emotionally. But, once I am at church I get encouraged by everyone I see and visit with. I go home elated.
4. Serving others. Yes, service to someone else is a big lift. It's a feel-good time. Helping by visiting, working together, or just holding their hands. I hate hospitals. But I like the way I feel after visiting someone there. If I can make them feel better, it makes me feel better.
5. Comedy. I love to watch good, clean comedy. It has to be clean and it has to be good! If it is just dorky, it isn't good. Or read a good humorous book. I have two favorite humorous authors...Rene Gutteridge and Liz Curtis Higgs. They just do wonders for me! Most of the good comedic movies for me are animated..."Happy Feet" is one.
6. Shopping. Now this one can be expensive. But it doesn't have to be. Even if we are broke I can usually scrounge up $10 or so. Then I can shop as long as I can without pain and be particular about what I am looking for. Sometimes it is just a bouquet of flowers or a box of cookies. Sometimes it will get me a shirt. Sometimes it will be for a gift to someone else. But shopping is good therapy.

So, what do you do for your depression?

What is Lupus?

I was diagnosed with Lupus about 15 years ago. As I look back, I can see symptoms a lot farther. Lupus is a strange and complex 'disease'. About 20 years ago I had a doctor say in passing that I was 'allergic to myself'. I laughed even though it sounded very accurate.

In the beginning, I felt really sorry that I just couldn't do things like usual. I think my poor husband thought I was being lazy. I know other folks did. It isn't that I didn't want to do things, but that I didn't have the energy to do them. Even simple things like doing the dishes or the floors. There was pain to deal with too. But there weren't any reasons for the pain. At least not that we could find. I could be standing in the kitchen decorating a cake and just start hurting. I thought at first it was the height of the counter top. I am a little on the short side, so that made sense. Then I thought it could be the kind of shoes I wore (and more likely just being barefoot). But the pain would be enough to make me go sit for a while. We only had 3 children at that time and the youngest was just a baby. I think this was close to the beginning of my Lupus symptoms.

Lupus is an auto-immune disease. It is not to be confused with AIDS which is an auto-immune deficiency. There is a big difference. You will have to look it up.

For me, lupus is inflammation everywhere! Inflammation internally and externally. My skin is affected by the lupus. I have to be very careful of sun exposure. It can cause extreme burns and burn-like conditions within just a few minutes. I wear sunscreen with an SPF of 75. I also wear sunglasses, long sleeves, gloves and hats. The inflammation is in my organs, joints and skin. I have had several biopsies for whatever reason. They all show chronic inflammation. The biopsies may or may not show anything else. With Lupus I am more susceptible to illnesses, particularly lung problems. My immune system is compromised. It takes twice as long or more to heal even for simple things as scratches.

Lupus in general is a disease where your antibodies see normal tissue and normal cells as foreign. The antibodies are designed to attack anything foreign in the body. So, when the antibodies get confused and see normal tissue as foreign, then it attacks to try to heal the body. It is a constant battle. Lupus effects everyone differently. My mom has lupus, but hers is different from mine. Some symptoms are the same and some are not.

Lupus takes your energy away. There is fatigue, pain, swelling, fever and rashes. If you have Lupus you will more than likely to have more of the over 200 auto-immune diseases. I have about 5 of them, Rheumatoid Arthritis, Alopecia, Asthma, and Reynauds Syndrome.

There are tests to determine if you have Lupus, but the tests are not completely accurate. They can read false even if you have symptoms. A Rheumatologist is often recommended to treat Lupus. Find a good doctor. You need one that will listen! If you don't think the doctor is serious in treating you, find one that is. People with Lupus are fighting a debilitating disease. There is no reason to fight the doctor too. Lupus is often considered an invisible handicap. You don't look sick or disabled, but you have difficulty functioning and performing even simple tasks.

There are medicines that help alleviate the symptoms of Lupus. There are studies trying to find a cure for Lupus. Lupus can go into remission. When a flare hits it can be mild or severe, but either way it can be very difficult. I am in a study for a Lupus medication. I have participated for 3 years now. I am now getting the real medicine and it helps for about 2-3 weeks. The doctor placed an IV port in my chest to receive the infusion. I actually look forward to the infusion because I know it will help for a while. Plaquenil is often used for Lupus, but people of color need to be careful. They may have adverse reactions to it. It takes 3-6 months for plaquenil to work. There are anti-iflammatories and pain meds. Some people will need anti-depressants. It can be very depressing to be constantly in pain and immobile.

My auto-immune diseases (AI) are not my only health issues, but those are for another day. Right now I am doing ok. I won't say great. But everything seems to under control. I have been fighting off bronchitis for 3 weeks now. The coughing is hanging on and I knew it would. I had a nasty yeast infection throughout my system for months, but I think it is finally gone. Praise the Lord!

By the way, God is my source of strength and hope. My husband is next. He has come to realize what my disease does to me. When I say, "I am done", he knows it is time for me to stop everything and rest a while. He has taken over most of the household chores. I do what I can when I can and he does the rest. He loves me inspite of my health or lack of it. I have the world's best husband!

About me

The following is a list of diagnosis and why I am on disability. I debated for 6 months whether or not to file. I finally decided that if God wants me to have it, I will be approved. If He doesn't want me to be on disability, it would be denied. However, if I didn't apply, I couldn't have a chance to be approved.

After 4 months I was approved. No denial. No doctor visit. Pay was made retroactive. I should receive my first monthly check next week.

I am excited this has happened and a little sad too. I will keep doing whatever I can physically. I have had to give up a lot already and don't want to give up any more!

I can't bend without pain, can't go outside without coverup, must wear a headcovering (I am mostly bald), I must sit to hold my grandkids. I can't stand or walk more than 20 minutes without pain. After sitting a while my feet and ankles swell till they hurt.
I am anxiously awaiting State Fair time. Mom and I will rent hoverounds and go to the fair! We had a blast last year. For 5 hours!

Alopecia, Lupus, Asthma, Restrictive Lung disease, Rosacea, Rhumatoid Arthritis, Osteo Arthritis, Sleep Apnea, Runner's Knee, Reynaulds, High BP, Chronic Sinusitis, GERD, Degernerative Disk, Bulging Disks, Torn Disk, bone spurs on spine and feet. Oh, a benign tumor in my right lung.

I take about 8 pills in the am, 5 at nite, infusion once a month, and a few meds in between as needed. I have had a Port put in to make the infusions and blood tests easier as I have very small veins.

I got a new "cranial prosthesis" with my disability money. The wig takes a little getting used to for me, but I like it.