Monday, October 19, 2020

Doctor Update

 Tuesday I head to Des Moines for second test. Will take 2-3 hours. Had to be complete before surgery.

The first surgery will be scheduled for the spinal stimulator sometime after tomorrow. doctor has to file insurance and get it approved. First surgery is to do a temporary implant. They want to make sure it works. After a week they will schedule the surgery to make it permanent. Will take two months at least to recover according to the doctor but hopefully will make a difference. If the stimulator works I can cut my pain meds in half over time. 

I am so thankful for the stimulator.

Will keep you posted. Email me if you have experience with a stimulator and let me know if it works with your lupus, fibromyalgia and arthritis pain. 

As always please add me to your prayers. Leave a comment or email me and I'll put you in my prayers as well.


The test was merely two questionnaires and visit with the doctor. She deemed me an excellent candidate to get the stimulator. Now I wait for the doctor to approve it through insurance and it is back to Des Moines to install a temporary one. Will be done in the office. After a week I'll return to completely make it permanent. Will be done in the operating room at the hospital. Just hope to have it complete before the end of the year.

Friday, October 16, 2020

Vitamin D Plus

 I've had a problem with low vitamin D for years. Have been on an over the counter d3 supplement for years. Apparently it is not working anymore. Doctor put me on prescription vitamin D this week because my levels are "rock bottom" according to him. Cost $20 for eight pills. Two per week. Not covered by Medicare part D insurance. Add that cost to 21  prescriptions. Gets expensive in a hurry. I'll be on the prescription drug for three months and then an over the counter for the rest of my life.

This is common for people who suffer from lupus. We can't be in the sun because it causes flares. I found this out the hard way. I went on a cruise and came back with a sunburn. Was sick for three months. They tested me and found systemic lupus. The job I held was soon eliminated because "they didn't want my chronic health problem to drain their insurance." Since this happened after my father died I was dealing with grief and never realized he couldn't legally do that. I had worked at that church for six years. Another reason I did not sue.

If you've tested positive for lupus stay out of the sun! Just don't neglect getting vitamin D through a supplement. Never knew how damaging it was when you fall into dangerous levels. Can do a great deal of harm like heart disease. Do your research and learn. I thought the vitamin D testing was the new "it" factor for doctors. Turns out being low in vitamin D can do damage to anyone. 

I've been low for years and never gave it a second thought. My doctor told me the other day I was in a danger zone. I HAD to do something. Thus the prescription vitamin D.

Dealing with so many health problems is overwhelming. People who don't have to deal with it Just don't understand. Every time I go to the doctor they find something else wrong. A new diagnosis l have to accept and adjust to. This past year they've added several. In January it was confirmed I have white matter disease and vasculitis of the brain. My doctor who had the test done told me the white matter level I have is beyond my age and health level. She said at this point I shouldn't be able to function at all. I've fought it by writing and reading. Trying to stay a step ahead of it. I know there is no cure or way of preventing it but dementia is in my near future.

In May I had a port surgically implanted. It has made a huge difference in getting Benlysta infusions. My veins were shot before then from three years of infusions. Thankfully Benlysta has reduced my fevers, swollen joints and improved my blood tests. Unfortunately the side effects are bad. One being cancer. Another death. Since it is a chemo drug it has all of the same side effects of nausea, insomnia, exhaustion, etc. 

I have  heart valve stenosis, something they have to scan and check every year. They found it when measuring the thoracic aortic aneurysm just below my heart which is 4.8cm. They found the aneurysm by accident years ago. I went to the ER for pleurisy and came out with an aneurysm. Down the line I'll have to have surgery for both. I'm at the moderate level for the heart valve  so surgery is not too far off according to the cardiologist.

They found two more bulging discs in my spine along with further spinal stenosis. More spine surgery ahead. 

Extreme pain in my back took over in late spring. I had physical therapy come to the house twice a week for two months. Their conclusion was they were not doing any good. I was too weak in general and the pain too far advanced. Then I went to pain management. They did two epidural each which lasted for a week. Each one should have lasted three months. 

On to the next phase. Arthritis has covered my entire spine and back. Now I'm seeing a specialist who will surgically implant a spinal stimulator to help control the pain. First I had to have two MRI's and see a doctor to determine if the pain was physical or emotional. Just a technicality he said since I have full proof of pain from x-rays and MRI's along with diagnosis. Then surgery to implant a temporary spinal stimulator for a week's trial. Then back to make it permanent. All of these trips are four hours round trip by transit. Wear and tear on an already sick body. But worth the risk of this stimulator works. I can cut my pain meds in half!

Looking back at this year's diagnoses it has been a hard struggle to deal with and accept. No one can do it for me. Only I can. 

I started this blog post to warn lupus sufferers of vitamin D deficiency. I hope you'll also see what could be added to your list of growing problems over time. I started with a systemic lupus diagnosis twenty six years ago. They gave me ten years to live. For some reason I'm still here. We don't always see the impact our life has on others but have to trust it does. Just hope I can help others understand what is involved and those who want to know more about it can find some info here. Also fibromyalgia. I have dealt with it for over twenty years. 

The only way to handle a multitude of problems is one day at a time, faith in the Lord and lots of prayer.

This blog was started to share my life living with lupus. Over the years more illnesses and lupus damage has been recorded. It can be a scary experience dealing with chronic (lifelong) illnesses but the more we share the more we know how to deal with them. Always research new meds and side effects. Research and learn about everything behind your illness. In this case knowledge truly is power.

Tuesday, October 13, 2020

Which One Are You?

 People with chronic (lifelong) illnesses are generally dealing with pain 24/7. I've heard from people on here whose spouse or children constantly pass judgement on them even though they try to avoid stress at all costs. It is as if  they can't do anything right. Even when someone settled into a peaceful day being thankful for everything there is always one who wants to destroy that peace. It's almost like they're so miserable they can't bear the other person, the one who is suffering,  being content. They have to do something to destroy it. What does it say about the person who tries to control the woman who has no life because of illness?!

I'm referring to a lady whose husband has done this to her repeatedly. She's suffered from lupus almost as long as I have. She's in intense pain  just like I am. She has a husband who would rather her be miserable and suffer than to do or say something encouraging and supportive. He'd rather control her limited and somewhat helpless life simply because he has to have control and manipulate her every move. People like this lack compassion. People like this make me sick! Amazing!

She's a good person who shared her life and experiences with me. I asked her if I could write about it here and she was all willing to share in hopes someone would benefit.

She's a strong woman even though she doesn't feel like she is. She has two beautiful daughters. She endures her husband's selfish behavior because she knows saying anything to him would just make it worse. So she endures him. This isn't living but existing. 

I did similar  things to my mother when she was bed bound. I was the law in that case. It was my way or else. Worst thing I ever did but I felt trapped with her even though I was given a gift to do for her by taking care of her 24/7. I learned many devastating lessons one being I could never make it up to her. Second was the way I behaved came back to roost in my own life. Be careful how you treat others. Otherwise you'll be on the receiving end a few years down the road. We do reap what we sow. 

Thankfully I did not repeat this behavior with my dad and brother who became ill and died a few years later. I showed respect for them and gave them full control of their lives while I did what they needed me to do. 

We all need encouragement and support. Control and hurting another person makes both of you suffer. Compassion goes a long way. Try showing it without expecting something in return. Life is hard enough when you're well. Add illness, having little control of your life and hurt to the mix. 

 As the Bible says "Do unto others..."

You have a choice with every person you encounter. Be a kind encouraging person or try to control someone. You decide. Remember you'll have to answer to God one day for your choices and with the way prophecy continues to be fulfilled today it won't be long when we face Him. 

My friend still feels trapped in a broken body being controlled by her husband who can't see the damage and hurt he is causing. He's too concerned with what others think of him, controlling her to prevent anything from affecting him and his wants and needs and simply giving him Power. Quite a selfish way to be don't you think? My friend is Joanne and she would welcome any encouragement or support you share.  Thank you for listening to her story and understanding how important it is to treat everyone with kindness and compassion.

If this story stirred anger in you might be time to self evaluate your own behavior. Thanks for letting me share her story. Leave a message for Joanne in the comments.

Tuesday, September 22, 2020

Turn For Hope, I Hope!

 I wanted to write this post a week ag. Pain, lupus flare, fevers, and now a sinus infection have delayed me. I'm so sick of suffering with chronic pain. The only time I'm not in pain is when I'm sleeping but the pain gets so bad it wakes me up.

My pain management doctor said the epidurals are not working. I have to have a spine stimulator surgically implanted. Someone told me they had it done and the pain is managed. With lupus flares come intense joint pain. It will help as well with this! The doctor who will do the surgery is two hours away in Des Moines. Four hours one trip. I see him next Monday. Then my infusion is Thursday and another four hour round trip to Urbandale which is a suburb to Des Moines. As for surgery day I'll have to work that out. Trip up won't be a problem but not knowing how long it takes and whether it is outpatient or if I spend the night will make it more complicated. And if the surgery is early I may have to spend the night in Des Moines the night before. Too many what ifs. With the transit I have to schedule a pick up 48 hours ahead of pay out of pocket. Costs $100 with that distance. Once I can figure it out I'll be ok. It is the unknown that concerns me.

The insertion will be complicated because my spine and all across my back is covered in arthritis. Even with an epidural they had to go in the right and left side of the spine instead of through it from the back. I dread the pain but look forward to controlling it. I'm 59 and already have several foreign pieces in my body for life. Artificial lenses in both eyes, cadaver disc in my spine along with bolts and screws, a port on the right side of my chest, Adding a spinal stimulator next. Amazed I don't cause radio interference!

would greatly appreciate prayers this next week. Traveling the distance I have to go will be very rough on my body. I really miss going to the doctor and hospital in less than 30 minutes. Traveling takes a heavy till on my body.

an old high school friend died Sunday. Her brother found her in her bed. She had heart problems and had chronic pain throughout her body. No matter how much she suffered she always encouraged other people who were suffering too. When I saw the message my first thought was " She's not suffering anymore. She is blessed to be rescued from suffering. " She was 58. 

Everyday I ask God to send Jesus to come and get us. Then I ask Him to take me home. I just hope one of those things happens soon.

Don't give up! Lupus, fybromialgia and arthritis causes unrelenting pain. I have been reduced to walking slumped over. It hurts to much to straighten up. I look forward to day I hope is soon when I can turn on a machine and feel the pain melt away. I've been in Iowa a little over a year and still haven't hung up 3/4ths of my pictures and have boxes still to unpack. A few years back I would have finished both in two weeks. My health has drastically declined along with my strength. The physical therapist was stunned at how weak I was. Therapy didn't help. Epidural didn't help. Now the stimulator hopefully will help. INfighting lupus for twenty six years has caused so much irreparable damage. My body is winding down and I'm tired. I've always been ready to stand before the Lord but now each day I long to see Him sooner than later. Knowing Sandy gave me her word she will take Bitty to live with her I am content to go. I'm suffering. I'm tired. I'm ready.

Saturday, September 5, 2020

Catching Up

 August was a physically miserable month. My back pain reached its maximum peak. An MRI showed the spread of rheumatoid arthritis across my back and widespread within my spine. The pain management doctor had a hard time finding an entry point to put the needle to perform an epidural. Spinal stenosis made it difficult as well. I'm amazed at how back pain can cause your entire body to collapse. 

In just one week I'd had a second epidural, saw Two doctors and finished with a benlysta infusion. Now I'm in bed with Benlysta side effects for a week at least. This one wiped me out! Just want to sleep. But as always it wakes me up around 2:00 am and I can't sleep for hours. Sleep helps to heal our bodies. When you can't sleep it interferes with that process. With lupus all doctors tell me I need to sleep 10 hours a night. Otherwise less hours will send me into a flare. The flare causes more lack of sleep which causes more flares. Flares cause irreparable damage to my body. You see the endless cycle. If you know someone suffering from lupus and find them sleeping don't wake them up!! It can wait. Sleep is a much needed part of healing. 

Two weeks after my first epidural  I was back in the pain management office with the same intense pain. The epidural which had lasted three months when I would get them ten years ago only lasted two weeks. I went in with more intense pain hoping for a solution. He did another epidural. This time he went in on both sides of the spine instead of head on. Took him awhile to find an opening but it was easier this time. Two days later the pain had subsided from a ten to a 5-6. It cut the pain in half. Fla

Other areas of arthritis have made itself known. Now spread throughout my neck and middle back I'm also looking at another MRI soon. 

He told me I was in need of another back surgery in the near future. We would use epidurals for as long as they would work but there is another damaged disc that needs to be replaced. That along with so much arthritis has caused spinal stenosis to worsen and surgery would release the pressure around the spine. He mentioned inserting a spine stimulator at some point to regulate the pain. Surgery would release the pressure but arthritis is so widespread that pain of some level would always be there. I've been living with pain from rheumatoid and osteoarthritis, systemic lupus and fibromyalgia for over twenty-six years now. You never get used to it but just like death you learn to live with it. 

Pain management added more medicines some of which is over the counter. He said removing me from pain medication would be a bad idea since my pain is intense with medication taking the edge off of it. I don't want to experience the intense pain without it. Physical therapy said the same thing. My previous MD told me the medications I am on not only cover the symptoms caused by lupus but also make life bearable under an intense pain I live with. Would I rather throw them away? You bet I would but not to the point of living a physically miserable life. The pain management doctor in Lexington said they could only make me comfortable. Help make each day bearable under the intense pain. I'd rather to not have to curl up in a heap of debilitating pain than to suffer. Every day has its own troubles. Pain and illness are not something we choose to add but it happens. 

Today take time to care and encourage. You can't buy a prescription for those wonderful things because they come from the heart. 

Doctor Update

 Tuesday I head to Des Moines for second test. Will take 2-3 hours. Had to be complete before surgery. The first surgery will be scheduled f...