Wednesday, February 26, 2014

Change In Treament

Finally pushed myself to the rheumatologist. She told me what I already knew: I'm having a severe lupus flare. I could barely hold my head up when I was being examined.

So she put me on cymbalta for the extreme pain. Started a sample yesterday to see if I could tolerate it. So far so good. She's also putting me on a medication that is given intravenously. Problem is it costs $28,000 a year. That is the cost of the generic version. No, I cannot afford to do this. So she's checking into a program to take a bite out of the cost. Until I'm cleared, I'll just suffer along.

The drug is called Belimumab, generic for Benlysia. It has some pretty nasty side affects:  http://www.benlysta.com/

http://en.wikipedia.org/wiki/Belimumab

This one stuck out:
Common adverse effects reported with belimumab include nausea, diarrhea, fever, as well as hypersensitivity and infusion-site reactions (severe in 0.9% of patients). It is suggested that patients be treated with an antihistamine prior to a belimumab infusion.[13]
A greater number of serious infections and deaths were reported in patients treated with belimumab than in those treated with placebo. Infections are due to the immunosuppressant properties of the drug.


This is the first medication designed for lupus treatment. Quite frankly I'm tired of being imprisoned in a sick body,
 having no life or friends, and  existing. If I can find a way to pay for this and if this is the hope for suppressing this horrible disease,
I need to try it. Nothing else is working. I'm running high fevers, swollen joints, severe pain, severe fatigue, etc. etc. etc. You can only take
so much before you give up. And I'm on the threshold of giving up. "Why bother?" races through my mind far
more than it used to. I'm tired of fighting alone.
   
A lady took me to my appointment since I have no feeling in either legs or feet and my eyesight is totally shot
from this horrible disease. I told her that I have lost more friends than I can count. People don't want to be around someone who is sick
and limited. A few years ago I had to have someone come in to help me with housework, check on me, and just be there.
The wonderful woman who looked over this program told me I wasn't alone in this thinking. She said those who have family
sought out their help so that they wouldn't have to see or deal with their sick loved ones. She also said churches were the worst.
If you're sick and unable to do something for the church, they're not interested. Boy could I share some personal experiences there!

It is hard to get up in the morning and face another day of illness and suffering. It is even harder to do this alone. I've been too sick to
walk around the neighborhood let alone walk downtown and get the things I need. My greatest fear is dying and no one finding my body
for days or weeks. I worry about Rascal. Keep food and water bowls filled to the max in case something happens. I never want him to suffer
should something happen to me.

There has to be hope to keep going on.

Saturday, February 22, 2014

OUCH!! Bad Night Indeed!

What a horrible night! Pain set in my abdomen last night and I woke up with a fever of 102 degrees. I couldn't stop shaking! Even with the electric blanket, I could not get warm. Shivered for over an hour.

Now I'm swollen and in severe pain in my abdomen. Haven't eaten anything to cause a diverticulitis flare, but it appears I'm having a good one!

If I were in Dothan, I'd be in the ER. With no one here to call for help and not being sick "enough" to call an ambulance, I simply don't know what to do. So I pray and pray hard for the pain to subside and the fevers to break for good.

I am miserable tonight. Sitting up doesn't help. So I'm going back to bed and curl up with the blanket.

Friday, February 21, 2014

Sharing!

A friend asked me to write an article for an online magazine for student doctors. She wanted me to share my experiences as a patient since I've had lupus for 19 years now. Was such an honor.

Just wanted to share it here:

 
 

Wednesday, February 19, 2014

Still Lupus Suffering

Still suffering from a bad lupus flare. This is the first time I've been able to sit up and write. The weather has taken its toll on my body and it isn't finished yet.

My former Rheumatologist in AL said that lupus patients are a great weather barometer. They also suffer from its affects. Never have truer words been spoken.

We've had warmer days here in Wilmore, KY this week, but the rain has poured in enough to destroy my joints. When it rains, my entire body wreaks of pain. I have a hard time breathing. I cannot mentally function. Forget sleep. Wasn't able to step outside to enjoy any of the warmer temps.

The rain knocks the wind out of me.

Tomorrow will be a bad weather/rain/wind day. Just praying for sleep! Lack of it is taking its toll. I look at Rascal and wish I could sleep as soundly as he does.

Spring isn't here yet. Very cold temps and snow chances are back in the forecast for the beginning of next week.

I want to ask another question when I arrive in Heaven. "WHY do people volunteer to help someone in need and then decide later on they just don't want to do it?"

I'm back to searching for help to the doctor's office in Lexington. The person who volunteered to help out in that area has given me info on the transit system. Unfortunately, it would cost me over $50 round trip just to go to the doctor. Not an option!

If the shoe were on the other foot, I would never do this to someone else. If I saw a need, had the means, and were able to help someone go to and from the doctor, I'd do it in a heartbeat. Believe me, going to the doctor is not a fun trip. It is a drudgery.

My legs are totally numb from the knees down. Lupus has destroyed the nerves in both legs and feet. I couldn't feel a gas or brake pedal if I tried. When one of my doctors checked the nerve damage I had, he said, "PLEASE tell me you're not driving!"

Driving? I can barely walk! Add to it the continual loss of vision I've experienced with lupus. I cannot begin to tell you how thankful I am for this computer. At least I can enlarge the screen so that I can see the words!

But instead of helping, people hurt. They condemn you for not being able to transport yourself to a doctor's office. They avoid you because of a disease that you didn't ask for. I'm so tired of the condemnation from people.

Stress added to the mix  causes more flares. More flares cause more irreparable damage to my body.

Why can't people just be kind? Don't volunteer to do something unless you mean it. Don't volunteer to make yourself feel good. Don't volunteer and then walk away when you get bored.

If I had asked it would have been different. But I never asked.

Lord, please don't let me ever treat someone the way I've been treated.

Sunday, February 16, 2014

A SLOW Sunday Afternoon

It has been another slow day. Haven't seen another person since Friday and then only briefly. I've been so sick, stuck in bed, and have cabin fever. So tired of being alone.

So many questions when I get to Heaven. Why do people avoid those who need them the most? Why does a walking cane chase away friends and encourage gossip? Why are so many people who claim to be Christians some of the meanest people I've ever met? Why do churches shun people who aren't physically or financially able to do something for them? What did I do in this life to be confined to a sick body and lonely life?

No matter where I go, I'm alone. Most of the time I can handle it with no problem. Some days it feels like the loneliness will swallow me whole. I wonder at times what purpose I have anymore. Being sick takes so much life away. Being alone makes it worse. Sometimes it feels as though I don't fit anywhere.

My body is swollen, running fever, in severe pain. I hate these days. If I need something, I struggle to my feet and eventually am able to retrieve it. Most of the time I just stop and give up. Decide what is necessary and avoid the rest. The pain is just too great.

I cannot afford to go to the doctor at this time (thanks Obama) and probably need to do so. So tired of deciding food, meds, doctor, or heat. The juggling doesn't help. I'm to the point of cutting meds in half to stretch them out.

Just tired of struggling. So weak today.

Wednesday, February 12, 2014

Wishing For Roses

Happy Valentines Day!



Mini rose bush

Tuesday, February 11, 2014

For Those Suffering with Lupus

It is a hard struggle. Life changing. You mourn the loss of your life, your health, and deal with struggling through it day by day.

I read "The Spoon Theory" a couple of years ago. She shares how to help others understand.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

 

Monday, February 10, 2014

Valentine's Day

Valentine's Day isn't a memorable one for me. Never received a valentine from a guy. Sad isn't it? As you age, this doesn't matter anymore.

All I am going to say about the day is this: if you know someone who be thankful to be remembered on Valentine's Day, send them a card. Kindness goes a long way! :)

 

Saturday, February 8, 2014

Still Feeling Homesick!

I'm still feeling homesick (see previous post). It has enveloped me like a storm cloud not willing to turn loose of its vengeance. I'm tired today, so tired. My heart is heavy. My body, mind and soul are heavy. Even sleep, the few hours I enjoyed, doesn't heal the burdened soul.

Worry about finances. Worry about what purpose my small, minuscule life must hold. Worry about everything. Worry is a bad thing, a heavy burden, the wrong thing to do, but somehow I tend to pick it up so easily and have a hard time releasing it.

My head his heavy today. All I want to do is sleep, but it evades me like love from an untruthful soul.

When I did sleep, I dreamed about dancing, being held close by my favorite person. Beautiful close dancing, slow and sweet. Now I have to walk with a cane, no feeling left in my legs or feet. Will that dream always remain a dream?

I am tired today, so tired. I'm tired of being alone, of the dreaded day to day of nothing, of not even being able to sleep where I can truly live in my dreams.

I'm so tired.

Thursday, February 6, 2014

BRRRRR!!!!!!!!!

It is cold outside! Worse still it is cold INSIDE! No matter how many layers I wear, I'm still cold. Can't afford to turn the heat up. Doing the best I can with clothes and blankets. Rascal is fine. He comes with insulation. He's also enjoying the blankets.

With any extreme weather, the pain is horrible. Besides suffering from systemic lupus, I also have arthritis and other illnesses that are affected. Extreme cold and extreme heat prevent me from functioning. My place needs to be cleaned, but I'm in too much pain.

So I curl up with a book, glasses and a magnifying glass (comes with the territory now that lupus has almost destroyed my sight), a warm blanket, wearing gloves because I can no longer feel my hands, and occasionally look out the window at the soft white snowflakes fall drift to the ground. Beautiful snow.

Years ago I loved a rainy day. It was soothing. Now it is painful. Snowy days are soothing. Even though the kids have been out of school more than in since the first of the year, I have barely seen one outside. I'm sure cabin fever is setting in with them.

I do miss flowers. How I wish I had bought some hyacinth bulbs so that they could be filling the room with sweet scent right now. I miss my plants, flowers, etc.

Just longing for a day when I can accomplish something, when the pain subsides enough for me to do small things around the house. Until then I have to accept the fact lupus has taken control once more.


 

Wednesday, February 5, 2014

And The Final Shoe Dropped

So my gas bill finally arrived. YIKES!! Since my electric bill AND my gas bill are through the roof this month, I'll be cutting meds in half and not getting refills. I'll also be cutting back on food. It amazes me how those who are suffering with illness can't afford to have heat, food or meds.

February must be circus month - I'm having to juggle again!

Homesick

I feel so homesick tonight. Yet, it isn't the kind of homesickness where packing a bag and heading home will cure it.

Sometimes I just want to pack a bag, pack up Rascal and send myself home. When I arrive in the driveway, I open the side gate, open the back door and step inside, my body sighs a huge release. There is something about going home. The arms of protections envelop you, release from worry overcome you and knowing you have a place where you belong make it all worth while.

My dad would be cooking is favorite meal with me cleaning up the dishes along with the rest of the house. After dinner, I would walk outside in the backyard and sit in the swing and try to count those beautiful stars again. I started way back in fifth grade. The best part of it all was the neighbors were still the kind, protective people who lived there when I was still in school. Unfortunately, it became a very unsafe, drug infested place before we sold the house.

Then I'd open my bedroom door, crawl into the bed I slept in since third grade, and fall hard and fast asleep into a world of good memory dreams, the kind life crowds out with worry and stress.

But I can never go home again. We sold the house after my brother died in 1994. My dad and brother had moved in with me a year before since my brother was diagnosed with cancer. Life changed drastically. My childhood home was gone. My only sibling was gone. My mother died nine years before. My dad died two years after my brother.

Tonight I just want to go home, to walk in that door, crawl into my old bed, and fall into a deep dream induced sleep, feel the security home brings, and be at peace. Will I ever find that kind of peace on this earth again? I wonder sometimes.

I can't go home anymore. 

I miss my mother, father and brother so much.

Tuesday, February 4, 2014

The Power of Words

I would rather be alone in silence than with someone who holds me under a microscope, snaps at me for no reason, constantly uses words to tear down my self esteem. Do I have a magnet or something? Why is it that I seem to find people who want to step on me and push me down so far that I cannot see up? Why is it I'm always judged for every move I make even when I don't do anything to be judged for?

I always said if someone were concerned about my behavior, they were leading a terribly boring life. After all, mine is a boring, day to day, get through it, do what I can kind of life. I believe in giving kindness and love to every person who comes down my path. If someone is hungry, I'll give them my food. If they need clothing, I'll give them my clothes. If an animal shows up on my doorstep, I'll feed them.

Lately I find myself defending every decision I make even though those decisions are minor ones. I am a quiet person. Blend in with groups. One on one person. Doesn't make me any better or lesser a person than anyone else. So why is it that I seem to attract people who are the extreme opposite who want to, for lack of a better word, bully me? I've been so stressed out that my hair is falling out. I'm stressed out so badly that I cannot sleep. I question every action I take, every thought I have, I get angry when I shouldn't.

Being a writer, words affect me greatly. I soak them in. I take a person at their word. So when someone says they will do something, I believe them because when I give my word, I do it. If I can't, I tell them and then apologize. My sensitivity to words started with a mother whose words nearly destroyed me growing up. Those are the words I cannot seem to put behind me, but I'm trying. If only we could see ourselves the way others see us.

Except for some people. If I saw myself as this person saw me, I would see a person who was sick because I caused it myself, would be cured immediately if I had more faith and ate better, could stop taking my medications, reclaim the life I had almost twenty years ago when I was first diagnosed with systemic lupus. I would not be a burden to others, an inconvenience, or alone. Really? It amazes me how some people know more than the person who has suffered through years of health loss, near death, multiple illnesses, acceptance of a lifestyle they did not choose, going through bankruptcy from medications that cost $500 just for one (then add 19 more), and have to do this all alone.

I choose to be thankful I lived passed the ten year mark!

Why can't every one understand each person is different and so are our struggles and experiences? Why can't people accept us for who we are?

I cannot change my health issues. I deal with them every day. I only talk about them here and with my doctors. This page is my release. I don't need someone hurting me, telling me I need to change my nature, that I'm not good enough just the way I am.

I am content to sit in a room alone, write, read a book. I love quiet. I am content with myself. I don't need a group of people patting me on the back because of something I did. If someone shows a kindness in that manner, I am grateful, but I don't need it to live. It amazes me some people do things for others just to get the praise. Actually it makes me sick to know that is the motive. My question to myself is this: why can't others see it when some one's motives are selfish?

Life is hard enough. We don't know what the other struggles with through each day. Kindness is a simple gift. Smiles are free. Love is a need. We all need someone to care and to listen. Why can't we just be quiet, listen and love the person we come in contact with instead of sucking the life out of a room or tearing down a person with words? I wish there was an answer.