Monday, June 30, 2014

Fuzzy Lupus Day

It is a fuzzy day for me. Can't concentrate. Can't remember what I'm doing while I'm doing it. Mental fuzzy. Lupus fuzzy. Lupus pain! Oh the Pain!!

The rain is still here and although it is cooler (which I love), the rain has wreaked havoc on my body. I'm in so much pain today. Couldn't sleep because my body hurt at every turn. (Doesn't help that my old mattress is so beaten up).

Last night's humidity came in waves. Sweat, cold, chills, sweat. Then the pain. So predictable!

Still have quite a bit to do before the Wilmore yard sale on Saturday. If I didn't need the money desperately, I would say forget it. But I need it desperately so I'm pulling out stuff and tagging it. The hard part is taking the boxes of heavy stuff to the front door area so that I can pull it out Saturday. 

All that's left is still tagging and hanging up Yard Sale signs on Wednesday night. That will be hard, too, because I'll have to "walk" the streets in the heat to get them up. Am I doing damage to my body by having a yard sale, walking in the heat, struggling to get it all done? You bet your boots I am! But sometimes you just have to do what you have to do. All money will go to refilling my medications (that I should have done at the beginning of the month but couldn't afford to do so) and paying toward the hospital bill. 

When you're in pain, there is nothing like a soft, warm kitty in your lap. Rascal has been sticking close to me the past few days. No matter how much I suffer, he's there when people aren't. Thank you, God, for fuzzy warm creatures!

 

Sunday, June 29, 2014

Punishing Those Who Are Truly Sick

Tonight I watched a story on "60 Minutes" concerning the abuse in the Disability system. Although Senator Tom Coburn focused on the scammers and lawyers who are making money by passing through those who are not disabled, I also realized a horrible thing.

The news story focused on disability as the new "welfare" and that is not true. It goes back to punishing the few for the lies and stealing of the many. Labeled yet again!

Not everyone who find themselves in the disability dilemma are there to scam. Some of us are truly sick, struggling and would give anything to physically be able to hold down a job.

After many trips to the ER, one where I almost died in N. Alabama, not able to function more than two hours a day, and I mean daily function. There are many days I cannot stand in the shower, wash my dishes, or clean my home. Things every one else takes for granted, I wish I could do.

With systemic lupus plus the multitude of illnesses that have spawned from it, I can no longer feel anything past my knees. I have to concentrate to walk, if you call it walking. I can barely pull myself out of bed. Many days I wish I wouldn't wake up because it is just too hard to function.

Add to the suffering making the choice of buying food or medication. I can't help but wonder why anyone would CHOOSE to do this on purpose!

It is hard enough struggling financially, physically, emotionally, but add to it doing all of this alone. My family died almost twenty years ago. I have no one to rely on. No one to help me when I can't get out of bed. No one to help me financially.

I worked my way through college paying for every penny. Believe me when I say I did not work so hard those years to accomplish something better for myself to end up struggling like I've had to do. It was NOT a choice.

So don't label people like myself who are here not by their choice, but by no other choice to survive. Life is hard enough without the weight of false labels.

Saturday, June 28, 2014

A Saturday Evening

Sitting here cuddling with my old cat, Rascal. If he pushes anymore, the computer will be in the floor! Rain came in yesterday and even though the barometric pressure has caused some harsh suffering from pain, I was glad to see it come. The temps were unbearable! The rain cooled the air like a gentle breeze.

Last night I was able to go to a friend's house. She treated me to dinner and I was so very thankful for that gift! End of the month and counting pennies again.

We watched her 9 o'clock bush bloom just after nine. Was so amazing to watch flower go from bud to bloom so quickly. I want one of those bulbs!

Today was spent trying to accomplish just one thing because the pain was so intense from the rain. Lupus patients are very sensitive to the weather both in summer and winter. I finally washed dishes and hung up the clothes. Enough for one day.



 

Wednesday, June 25, 2014

OK, Here We Go Again!

So I was approved for a grant for $15,000 to get a medication I desperately need, Benlysta, which costs $28,000. What do I do now?

I decided to call my doctor's office and let THEM do the rest. After all, I'm the patient and I don't know what the next step is. I dumped it all in the doctor's nurse's lap. She will call them, find out what goes next and set up treatments.

I should hear back from her on Monday when to arrive for the first infusion IF all the financial stuff is covered. Otherwise we're back to square one.

What I don't understand is how and why people who walk across the border illegally and stay here illegally immediately get all the care they need handed to them and an American citizen like myself has to fight and struggle just to get the medication I desperately need to stay alive. Why is that?

I've been trying to get this medication since February. With all the bumbling from the doctor's office, trying to pay for the medication itself, etc., it is now July and I still haven't started the first treatment. There is no excuse for this!

I actually feel good by calling the doctor's office and giving it to them to deal with! A weight lifted for a little while.

Now if I could only find a way to lift the weight off from struggling just to buy groceries, pay for medication refills so that I don't have to cut my meds in half, and juggling the stress that all of this causes thus sending me into countless lupus flares! There has to be an end to this crazy roller coaster!

Sunday, June 22, 2014

Lupus Sufferig

Sun exposure, walking in the heat, and stress (worry) have made me an indoor prisoner. Have had a hard time walking across the floor. Still trying to collect items to sell in the yard sale July 5th. Do I need to be in the sun and heat again? No, but I desperately need the money. 

Today I managed to fill a box from my closet. Always iffy as to whether it sells.

So I'm suffering, counting pennies and praying for a financial blessing. That alone would lift a huge weight from my life.

Friday, June 20, 2014

UPDate on Benlysta

I've been approved for $15,000 for a grant to pay for Benlysta. It costs $28,000. Still can't get the medication because I can't pay for the full price. I've suffered for a year with lupus flares and other medical conditions and it comes down to the fact that I can't get the medication I need. 


TAKING A BEATING

I've been taking a beating this week. A hard beating. Today I received a NEW bill from St. Joseph hospital. This one had been run through my insurance but not the part B. So I called yet again. (they already hit me earlier in the month for another bill). 

Today I find out they supposedly sent it to the part B but haven't received payment yet so I get the bill. The bill itself states it only went through part A. I told the person in the business office it takes time to receive part B and I would not be billed again. She said if they don't pay, I get a bill. Forgive me but it takes more than a few weeks to get payment and they know this.

I've NEVER had this kind of problem before with a hospital, doctor, tests. I will not be going back to St. Joseph Hospital. Not only have they given sorry service, but they don't submit insurance like they should. 

So now I have a bill for $150.00. I can't even buy groceries or fill my medications on what I live on. You can't get blood from a turnip!

Yesterday was another day of being beat up. I dressed and went out the door early Thursday morning hoping to beat the heat. I walked down to the college to pick up my registration for class reunions. I knew I was early so I hung out in the cool library for two hours. 

When I headed out the door to find some lunch, I asked if I could go ahead and just pick up my folder and info (since they weren't doing anything but sitting behind a table and chatting). They said no. I had to wait until 2:00. 

By this time I was hungry and so thirsty. So I headed to the grill to get some food. NOT open. I asked if the cafeteria was open. NOT open. Told me there was a Subway on the corner. I told him it was too hot to walk to the Subway and I was dehydrated.

 So I went to the student center. The coke machine was empty. They had not set up anything for reunion so I asked at the desk if there was any way I could get something to drink. The Hiccup Cafe in the student center wasn't even open.

A confused student didn't have a clue and looked at me like I had horns growing from my head. Another one said, "Let me see what I can find in the building." She came back with a bottle of water. I was so thankful for that water! I had come close to passing out from the heat and dehydration. 

So I sat in the student center drinking water and waiting until 2:00. The kids ran to and fro setting up stuff, hanging out on the sofas chatting. Another walked through with a sandwich plate and an ice cream cone. No food, huh?

I went back to the library at 1:30 and waited. While watching an older lady pick up her registration, I walked up and asked if I could do the same. They said I should wait until 2:00. I told them what was good for one is good for another. I wasn't going anywhere until they handed me my registration. They did.

I immediately left campus walking home in the extreme heat and humidity. By the time I finally arrived home, (after stopping several times to sit on steps) I was so sick I threw up. NEVER AGAIN. I'm done with college reunions. It was hours before I could hold food down. Had they let me pick up my folder (which took two minutes) earlier, I would not have been so sick. By the end of the day I was so swollen all over, I couldn't lie down to rest. It was 4:00 a.m. before I could sleep. My legs were still the size of water balloons. 

Where has the kindness, compassion, and care gone in this world? If it now happens at Asbury, the college that once was so loving and kind, what hope is there? I have never been so disappoint in my alma mater! If I had been a "Someone," I would not have been treated so poorly.

All of this makes me want to hide in my apartment and just forget the world. Over the past few years I've experienced very little kindness. Suffering, illness, heart broken, I have struggled alone. It has not been easy. 

Some people live in a fantasy world. They think there will always be someone there if they need them. Since I've not experienced this, I cannot agree. And since so many do experience this, I can't help but wonder what's wrong with me. Do I wear an invisible sign that says "Ignore this person?" Because I am so sick, do I repel people because they don't want to "invest" their time and care outside their perfect worlds? I can't help but ask again, WHAT is wrong with me?!

On days like this I just curl up and beg God for help. He's been the only one there when I go days or weeks without seeing another person. I count pennies at this point of the month just hoping to afford a gallon of milk. When I put my paypal link on this site, I had hoped beyond hope to find help from the kindness of strangers. I have over the years, but the help has dwindled. If only I could get a step ahead instead of ten steps backwards! My ebay sales are nonexistent. With the horrible economy, nothing sells!

Last night I mentioned to a friend that I'm tired of Ramen noodles. She said they are good. I said, "But they are not nutritious."

No wonder I'm sick - stress, lack of nutrition, cutting meds in half, sitting in the heat because I can't afford to turn on the air. 

Some times I just wish I could go to sleep and not wake up. It beats the suffering. Those days are more frequent. 

I just keep holding on to the fact that on July 5th I can set out items for the Wilmore yard sale and pray I can make enough to at least buy food. Another extreme heat day that I do not need physically, but have no choice in the matter. 

Tuesday, June 17, 2014

Heart Wrenching Dreams

Last night was hard. I woke up at 4:00 a.m. after a heart wrenching dream. I dreamed I went home last night, the home where I grew up. I rode the bus home like I did many other times from school. When I arrived, I realized my old home was now an enclosed complex, many homes within one building.

Just as I was about to open the door, I woke up. Almost home. Almost.

It was wonderful and good all in one. But when I woke up, I cried for an hour. There is nothing worse than not being able to go home, to not have any family left in this world, to miss them so much nothing will replace them and yet can do nothing about it.

I realized every place I've lived since losing them has not felt like a home It was merely a roof over my head. Home comes from the heart and mine has been so broken for so long that I never found another home.

I also realized there was no going home. There is no home anymore. No family. Nothing. How I miss going home! It wasn't fancy by any means, but it was home.

Most of the time I deal with life okay. Just one day at a time. When dreams invade my lonely life, I don't do well. Stress increases while I paint a smile on my face and go on.

With the increased heat and humidity, my body has swollen immensely. My doctor told me bodies that have a chronic illness will swell in the summer months. Sometimes it feels like someone took a bicycle pump and just pumped more air in my body. If I could float away, I would!

Since the heat and humidity has arrived, indoors I go once more only going out when absolutely necessary. It feels like an Alabama summer outside my door at 8:45 p.m. Wonder if it is too hot for the lightening bugs tonight?

On days like this, I am thankful to find rest and hope in a better tomorrow.

Monday, June 16, 2014

Thought This Was Great To Share

Nonsense is the operative word. Helping, listening, caring are different.
 
 

Well That Helps!

I heard back from the first company I applied to for assistance for the intravenous medication, Benlysta. They said I qualified for the assistance, but my prescription wasn't right. I knew better than to get my hopes up because this was the first company I went through who told me I wasn't in their system after two months.

When I called and explained what happened, I also told them their company told me they didn't produce Benlysta and couldn't help. So why was I approved? She said I could get any OTHER medicine produced by them.

Well that helps - NOT! The reason I applied was to get Benlysta, the one medication for systemic lupus. I thanked her and told her unless they cover Benlysta I had no need of their services.

Ever had a day you just wanted to scream?! There are companies out there to help with meds. They just don't want to help with the one I NEED. And I cannot afford the $28,000 it costs to get it. I can't even afford to buy food and medicine the same month!

Sunday, June 15, 2014

Sharing a Link

A friend posted this on her facebook page. I wanted to share it:

http://eatthinkbemerry.com/2014/06/a-perspective-on-suicide/

This stuck out in the article: "At his funeral, Jay’s bishop addressed us. The words he spoke are burned into my mind. He said, “I feel impressed to tell you that Jay spent his life struggling to survive. Suicide was not a choice he made, but rather a choice he happened onto when his pain was greater than his ability to cope.”

Sometimes it becomes too hard to cope with all we deal with on a day to day basis. Even praying doesn't seem to help. Dealing with a chronic illness (plus other illnesses) alone day after day taxes my ability to cope.

So many suffer from this. So many people would be grateful just for someone to care. Having walked in those shoes, I can vouch for the hunger that goes with wanting others to care.

Take time today to show someone you care. It will make all the difference in the world.

Father's Day

Remembering my Daddy on Father's Day. He was a hard working simple man who taught me to be content with what I had. He had a gift with animals. They loved him as much as he loved them. I am thankful he passed that gift to me.

He passed away in 1996 and I miss him every day.



 

Amazing What You Remember!

Yesterday I went to a friend's surprise birthday party. It was outside under a gazebo and the weather was still cool from the night before (49 degrees Friday night).

I tried to remember the last time I had a birthday party or even a birthday cake. It has been eighteen years since I've had a birthday cake. The only birthday parties I ever had were at Asbury University, the one place I gained self esteem. So that makes it thirty years since I've had a birthday party.

My family wasn't big on birthdays. Was never wished a happy birthday, can't remember but one cake that was made for me at home, and if I said I wanted something for my birthday, I was always told it was too close to Christmas (almost a whole month after).

I just sat and listened last night. When my friend's parents said they loved her, I tried to remember if ever my family said those words. No, they didn't. I hope she realizes just how blessed she is!

It is true that the best things in life are free - love, encouragement, listening, caring, someone to lean on in hard times. Even though these things are free, those who are blessed with them take them for granted. Those like me who are not blessed with them are teetering on the edge just trying to stand on their own. It is hard. It is heart breaking.

With lupus, your memory and mind are both affected. It is hard to concentrate and remember things. Most of the time I can remember only good things, but today I recall all of the bad.

On days like this I have to find things to be thankful for like a peaceful place to live. The temperature is getting hot outside and I'm so thankful to have a roof over my head, quiet, and a good fan.
As I scrounge through my cabinets to find something for lunch, I'm thankful for the two year old ramen noodles to eat. No matter how much time passes, these noodles never go bad. With my pantry and fridge empty, my stomach was not. Those noodles were oh so good!

Medicines are due to be refilled, but with no funds left to refill them I'll just have to cut pills into two pieces. I know I'm not suppose to do this, but sometimes you just have to do what you can.

Life is hard right now. Stress is bad. Flares are frequent. But I'm still on this earth for some reason.

Thursday, June 12, 2014

Lupus Flares, Bad nights and Dreams

With systemic lupus comes bad days and bad nights. With the weather jumping from 65 degrees during the day to mid 80's with lots of rain, my body has taken a huge beating. 

Last night was a bad night. I didn't fall asleep until 5:00 a.m. this morning. When I finally did fall asleep, it was with the aid of pain medication and pain patches all over my body. 

The one advantage of sleep is beautiful dreams. Because I slept so hard, I had the most beautiful dreams ever. When you're chronically ill and your life lacks quality, you are thankful for beautiful dreams. Sometimes I wonder if your dream is so real, so vivid, does the person you dreamed about have a similar dream about you?

But when I finally woke up, my heart was broken. I returned to a world of loneliness, illness and no one to lean on when I need them. It has been a hard struggle recently with medical bills pouring in and stress building up. 


I look in the mirror and wonder who that person is looking back at me. Am I where I wanted to be at this age? Not even close. But sometimes when you are so sick you just have to take it one day at a time. Those days just keep coming up empty. 

I keep reminding myself I am not the only person on this earth who suffers, deals with chronic illness alone and has to take life as it comes. It just isn't what I thought I'd be doing at this point in my life. 

Asking why never helps, but it does help when someone gains some insight into this world by reading a post, somehow gains hope from someone who keeps on going no matter what, and is reminded they, too, are not alone. 

Beautiful dreams come in waking hours just like they do in sleep. Sometimes it is hard to let go of them. Why should we? Dreams are a beautiful gift. I'm thankful for them when I can finally release the pain I suffer from and walk into another world of being able to walk without a cane, look like the woman who was not scarred by this horrible disease, and actually feel loved, something I've long forgotten in my waking life. 

Next week is my college reunion. They open it to all who have graduated from Asbury University (college during my day). I took a look at the list of those attending. Didn't know one person. Yet, I will attend at least one event.  So many years have passed. People have married, had children, those children are now having children. The end of my college days began with a dying mother and continued with care giving to my dad and brother, who also died within my 30's, while I worked full time jobs as a teacher, in two churches, and other fill in positions. Instead of marrying, I became a care giver. Instead of having children, I buried my family. Instead of climbing the ladder of success, I lost my health. No matter what road we had to travel, we are not the same people that we were in college.

No matter what road we are given to walk (and believe me, I never chose any of those things), we learn, gain wisdom and keep on going. Within the travels we are blessed with moments we will never forget - meeting Pres. Jimmy Carter and his wife, meeting and spending time with Kevin Spacey, meeting John Stamos when his band came to the local fair in Dothan, AL in the late 80's. Life isn't always what we planned it to be, but we have a fresh start each day. 




My life isn't exciting. That's okay. I'm thankful for moments God sends my way where I can just enjoy them and not drown in suffering. Sometimes they come in dreams. Sometimes just good sleep. Even though my life did not take the normal road most peoples' lives did, I refuse to believe my life has any less purpose. We are all here for a reason, many reasons. They just come in different seasons. 



Tuesday, June 10, 2014

Another Flare

With all the stress I've lived with the past week, I woke up today with another lupus flare. High fevers, swollen joints, nauseous, extreme fatigue. There is also a new rash appearing. My vasculitis lesions are starting to heal and here comes a new lupus rash!

If I could ask questions and get immediate answers from God, I'd ask the following:

Why are there so many hateful people just waiting to pounce on others?

Why can't ER doctors do their job?

Why is it that people with chronic diseases have to do so much "leg work" in their own treatment?

Why is it so few people care?

Whatever happened to compassion??

So many more questions come to mind, but would have no instant answers.

So now I'm back in bed suffering once again. Sometimes I just want to shout "GOD HELP ME!" I wish I had someone to lean on at times like this.

Monday, June 9, 2014

And Here Comes the Medical Bills!

This has not been my day! Rascal has hairballs and is throwing up. My blood pressure is out of control. And now I receive a bill for $129.00 from the hospital. YIKES!

So far the experiences I've had at St. Joseph East have not been good. Now I have to pay $129.00 up front while they try to work out the insurance problems.

And where do I get $129.00??? There isn't more than $25 in my account right now thanks to medication refills this month.

So my blood pressure is soaring and my stress level is off the charts. Looks like more lupus flares ahead.

Sunday, June 8, 2014

And Now We're Back on Track - I HOPE!

I saw my rheumatologist on Friday. Since the company faxed them a form for assistance on my behalf concerning Benlysta, she decided to continue on the road for me to take the medication. It took me waiting two months for an application, two months to hear the medication was not the company's medication and the application was not on file, and me searching two more companies on my own to finally get the right spot. Since I was pre-approved, hopefully this will be approved and I can finally receive the correct medication for my severe lupus flares. I cannot pay $28,000 a year for Benlysta. My insurance won't cover the medication. Without the assistance, I can't get it and will continue to suffer from the devastating affects of systemic lupus.

So now I'm praying this all works out. Problem still exists for my cost of travel to get the infusion since I'll have to go to Lexington to the Infusion Center of the hospital to receive the medication. First month I'll have to get an infusion first, second and fourth week to build up in my system. After that I'll have to go once a month for the infusion. I pay a friend $10 a trip for gas money, which I don't have. The first month will be most difficult as the small amount of funds I have to live on are devoured by medications, rent, utilities, and what is left goes to food.

So now I'm praying for gas money.

Last month was extremely hard financially. I lived on ramen noodles for two weeks. Thank heavens for ramen noodles!

When I saw my doctor Friday, she did an exam of the lesions all over my body. Vasculitis. Confirmed. She was shocked to hear my experience in the local ER. She was also shocked to hear a doctor prescribed 50 mg of prednisone for ten days, no tapering, etc. She said to throw away the pills. I am so thankful I've had experience with this medication and knew it was way too strong and not prescribed correctly. I can only imagine what other people have suffered from incorrect dosage from medications!

Note to everyone: if you are prescribed prednisone and it does not show how to taper down on dosage, don't take it!!

The new medication, Cymbalta, will soon be history. Turns out this medication caused my vasculitis flare. It is also raising my blood pressure by 50 points! Gone Gone gone! For some reason doctors like to give antidepressants to help with the severe pain experienced by lupus patients. I've gained 50 pounds from different antidepressants for this use alone. Once I taper off cymbalta, I'm never taking another one.

I was first given one after my Daddy died, the last member of my family. It was a hard time in my life. Almost 18 years later, they've switched me from one to another to control the pain. Enough.

I'll be glad to rid myself this one, too, because of the cost. One less pill to take. One less expense to have. Thank you God!

I'd give anything in this world to not to have to take medication let alone so much of it. When I was first diagnosed with systemic lupus, I was told it was an expensive disease. They weren't kidding. Treatments are expensive enough without the high cost of medications.

So this month I will not have to fill one medication. It is still a financial struggle. I must choose medication or food at this point. Most of the time I just cut medications in half when there is no money for them. Looks like this month will be one of the "cut pills in half" months.

Unlike most people, I don't go on vacations, buy clothes, buy "wants," etc. I simply pay rent, utilities, medication and food. My clothes are worn out, my trips include grocery, doctors and hospital.

I find it fascinating how people are willing to offer advice on how to save money. Truth is this: unless you walk in these shoes, you truly cannot understand how hard it is.

 

Tuesday, June 3, 2014

Unbelievable!

Since February, I have been attempting to gain assistance for the drug Benlysta. It is designed for lupus patients. I ended up waiting two months before finding out no one bothered to mail the application to me from the doctor's office. When I had my last appointment, the office took my completed application and faxed it that day.

Two months later, no word from the company. Today I called only to find out they don't have that medication! Therefore, they cannot give me assistance. The doctor's office gave me the wrong application! The company didn't even have a record of my information being faxed to them.

I'm so mad I could spit nails! Will I ever find a doctor's office that is competent enough where I don't have to keep following up and making sure everything is in line? I'm furious! Two more months wasted while I suffer!

I called the office and left the message to the nurse of the doctor. If they don't straighten this out, I'm searching for a new rheumatologist. I'm so sick and tired of  "doctors!"

Sometimes I wish I were a "somebody" so that I wouldn't have to keep experiencing this horrible healthcare. If I were a celeb, this would not be an issue.

There is no one to fight for my healthcare. Only me. No one to call and straighten out problems. No one to stand up to ER doctors who don't bother to examine me or even prescribe medication correctly.

I'm tired. I'm tired of fighting the medical profession just to get treatment for a chronic life threatening disease. I'm tired of being stepped over.

It scares me to think what will happen when I can no longer speak for myself.

Five months later and I still don't have the medication I need.

Monday, June 2, 2014

Sunday, June 1, 2014

Lupus: Pay when You Play!

Watched the steam train come by yesterday. Afterwards went to an 1800's demonstration. Today I can barely move. Sun exposure set in far too quickly this time.

Rule number 1 of living with lupus: NO Sun exposure!

You'd think after 18 years of suffering from this horrible disease I'd learn this one! Nope!

Am I glad I went? Yes. Would I do it again? Yes. Sometimes you just have to take a chance and hope for the best. Problem is I always pay for it physically when I do.

Today I spent the entire day in bed sick. My friend called at 1:00 and I could barely speak. When you play you pay with lupus!

It wouldn't matter if I took a bath in sunscreen, the exposure to the light and heat is enough to do me in. I'm still recovering from vasculitis, too. Fevers have been awful today. Itching has returned.

The heat and humidity are gearing up in Wilmore. I have to be more careful.

Note to Self: even though I have to stay inside more, there is no reason I cannot enjoy myself. Sure beats ending up in the ER or the hospital!