Saturday, December 9, 2017

Need For Ramp

My neighbor just brought me an unexpected bill for the extra costs to redo my ramp. Something that could have been avoided if Habitat had done it right in the first place. Includes the extra lumber to build a ramp under the door, screws, and other things. I now owe my neighbor $60.00.
With my medications doubling in cost in January, times fifteen prescriptions, I'm overwhelmed with how I can pay for them. This $60 is an out of the blue expense I cannot handle.

If you can help, please do!!

Thursday, December 7, 2017

UPDATE

Had a bad reaction after my Benlysta infusion last week. Had the same reaction this past Monday. My doctor said it was a reaction to the medicine. My Rheumatologist thinks it has something to do with my heart or the aneurysm below my heart is leaking. At any rate I'm not able to sleep but a couple of hours a night, my blood pressure is wacky, my heart is fluttering, and my muscles are achy and weak. When I was in the rheumatologist office Monday my blood pressure was 99 over something. Fifteen minutes later it was 138 over something. I'm tired of dealing with all of this stuff and not having guidance from a doctor. Rheumatologist office called early Tuesday morning and since I was asleep I didn't hear the phone. She left a message for me to call her back. I did. She never returned my call. So I called Wednesday. Still no return call. Sad to say this is typical for this office. Never get a written test result from them. I'm stuck chasing down prescriptions and test results. No excuse on their part.
Someone asked me what I wanted for Christmas. Being alone for over twenty years I don't tend to think about such things anymore. Besides what my heart wants can't be put in a box and wrapped up with a bow. Sad it has come to this in my life, but this is my reality.

While others have their minds on putting up trees, buying gifts for their families, and Christmas parties, my mind is consumed with how I am going to be able To pay for my medications in January since the cost of each will double.

Being a long time writer words mean more to me than mindless chatter. I tend to take people at their word. But in today's society words don't mean much. Promises are useless. Actions have always spoken louder than words. My experience there has been actions and words don't support each other anymore.

During this time of year I find myself with yet a small glimmer of hope that there is one soul who cares about he ones with no family. As each year passes that small glimmer keeps getting slimmer and slimmer. I wonder if this will be the year it disappears completely.

I read an article in an old Guideposts magazine a few weeks ago. It was about a single mom who struggled to make ends meet. One day she needed milk for the children, but had no money. She asked God this question, " If there is one soul out there who listens to you and follows your voice, please lay it upon their heart to bring me milk." She had grown numb to people going through the church on Sunday and Wednesday services, church activities, and leaving God behind the rest of the week. To her actions and lack of actions spoke so much louder than words coming from a pulpit. "Lord, if there is one soul who cares about me, please let them help."

Later that day a stranger knocked on her door. He said God put her and her children heavily on his mind and heart. He not only brought a gallon of milk, but several bags of groceries. He sat and listened as she thanked him for hearing God's voice that day and for being the hands and feet of Jesus. He cared enough to do something and not just give her useless advice. By the end of the week he had helped her find a job and babysitting services.

Even though I don't know a family, I feel like that woman in so many ways. I've stood in my kitchen begging God to show me one soul who cared about me only to lose myself in tears and cry myself to sleep. Then I awaken to the same routine with still no answer. I feel like I'm standing on a ledge with my toes moving closer off the platform.

And there are so many people in my shoes feeling the same way. Today take time to tell someone you care and then back it up with actions. As the Bible says faith without works is dead, so are words without actions. Care about those who are hurting today. They are all around you.

Wednesday, December 6, 2017

Ebay

In need of funds to pay for medications. Have listed many items on ebay. Please check them out.


https://www.ebay.com/sch/maryjcal/m.html?item=322926303653&ssPageName=STRK%3AMESELX%3AIT&rt=nc&_trksid=p2047675.l2562

Saturday, December 2, 2017

Just In Case

Just in case you are on Benlysta, make sure you're aware of the side effects. I had a bad reaction this week after my infusion. Couldn't sleep for two days, anxiety attack (and I've never had one before) heart flutters, blood pressure out of whack. Came close to going to the ER. My doctor came mid week and told me I had a bad reaction to the medicine. The only thing to do was to wait it out. 

It has been a long week.

Thursday, November 30, 2017

Moving On To The Next Stage

Yesterday a power chair was delivered to my home. I've become unstable in standing and walking. Damage from inflammation caused by lupus has all but destroyed parts of my body. So I've moved on to the next step. Power chair. Of course it does not allow me to use it in some parts of my apartment. Can't ride into the hallway in my bedroom or bath because it is just too small to turn around. But I can use it in the living room, dining room, and outside. Have to be careful in wet weather because of the controls. Has capabilities of raising my feet up above my heart, adjusting the back (which I still suffer from pain after spine surgery), and can lay down flat if I need to do so.

I'm thankful. Very thankful. But I'm also sad because I've reached this stage. Another part of life to mourn, accept and move on.

As December falls upon us, I look back to many events this year. Three surgeries, some successful and some not, learning the hard way how being an adult requires so much responsibility, accepting the fact people are the same no matter where you go and many just don't care. Actions always speak louder than words. Then there are those who are kind, compassionate, and make a difference in the lives they touch. Some days filled with struggle, pain, suffering. Others filled with thankful moments when flares aren't so bad. Life is hard enough. I've learned to take life one day at a time. too overwhelming otherwise.

Benlysta is proving to be a vicious villain in my life. This last infusion caused a bad reaction. I couldn't sleep for two days, blood pressure off the charts, heart flutters, anxiety, and pain. Not a day passes that I wish I had one soul to stand by me daily during all of this mess. Sad thing is I've grown use to it by myself. No one should have to grow use to being alone, especially when you're sick.

This is a difficult time of year. Many many people out there alone at the holidays. There are no dinners for us, Christmas parties, or even presents. No family gatherings. Stress and worry of paying for medications that are doubling in cost in January is a heavy weight. Dread of facing a new year sets in. Dealing with day to day responsibilities on a fixed income make it so much harder. But we go on, take care of our responsibilities, and pray for help and encouragement. Life is hard enough. Please don't make it difficult on someone else.

Since I've been a writer all of my life, words are important to me. I take them seriously. When someone tells me they care, I expect them to care. If they tell me they will do something, I expect it. But in life words don't mean much to some people.  Endless chatter  under the umbrella of good intentions. As for me, I stand by my word. If I can't do something, I let someone know. I've had to learn to sift through words this year and pick out the good intentions from standing on someone's word. I've experienced both throughout the years. My friend shared this with me yesterday. "Be gentle as a lamb, but wise as a serpent." Wisdom is a great gift. Discerning spirit is a gift as well. Remember to look behind the words you hear.  Weed out those who tell you what you want to here from those who speak the truth. Life is a great teacher. So is failure. You learn from both and grow wise in time.

It is during those times God brings people across our paths to show us there are still good people out there who do kind things without expecting anything in return. Thank you to those who are kind. My chair tech is one of those people. He goes in homes every day to deliver chairs and sees so much neglect, no appreciation for a gift such as this, and people who break down in tears when he comes. He delivers to homes where using a chair like this cannot be used due to space or extreme clutter or will not be taken care of over the years because of neglect. He has seen people who are alone in the world and have no one to help them. He has found situations where someone who can't walk far because they are on oxygen live in a handicapped accessible apartment with no elevators. He has held such places responsible by reporting their neglect to help one soul have a better quality of life. He has seen it all and still remains a kind man. I'm thankful he delivered my chair and showed kindness to me yesterday. It made all the difference in the world.

Be thankful for small things. Be thankful for big things. Be thankful for the rare people who show kindness not to just fill their own selfish need, but to make a difference in someone's life.  Remember every person you meet carries a struggle in their life. They, too, are struggling. Be kind.

I am thankful today for the chair that helps me function better.   I am thankful for feeling some better from the bad reaction of Benlysta. I am thankful for God's hand on my life.

Just one day at a time.



 

Sunday, November 26, 2017

An Update

Monday is my next Benlysta infusion. This past month was a struggle due to lupus flares. Life's stress, including emotional stress, caused many flares landing me in bed many times. The cold weather hasn't helped. The pain has increased with all of this up and down weather cycle. Haven't seen a difference with the medication this time and wonder if its effectiveness is working any more. Just don't have the strength to push forward.

My friend back home always puts flowers out for me this time of year. Sharing the photos. Since she goes twice a year, we don't tend to choose Christmas flowers. These are beautiful. This is an old graveyard in the middle of the country. Many of my mother's side of the family are buried there. Relatives I never met. Those I lost when I was young. 

I miss my family especially this time of year. Thanksgiving and Christmas are considered family time. When you don't have family, their loss is magnified. Wish I could have put flowers out myself.
This is the time of year to be thankful for family. No matter what the situation, whether they drive you crazy or not, be thankful for the time you have with them. There are many people in this world who will be alone at Christmas. No presents under a tree. No special memories to make. When you gather with your family this season, please remember there are many around you who are alone. Make a difference in their lives.

Would greatly appreciate the prayers.




Thursday, November 23, 2017

Thanksgiving

Today I'm stuck in bed sick from a flare. Lonely cold day.

If you have family, appreciate them.

Monday, November 20, 2017

Holidays

No matter where you are you're constantly reminded Thanksgiving and Christmas are made for families. Every movie, commercial, shopping event and gathering revolve around family gatherings.

So what do you do if you have no family at all? I've been through many holidays alone, but I just can't handle it anymore. The losses in my life are magnified. Just overwhelming. The last thing I need is to be reminded how I don't fit in. Im no one's sister or daughter anymore. I've never been anyone's wife or mother. I truly feel like a misfit floating through each day. My experience has been people who have families don't care about someone who doesn't.

Three days out of 365 stand out to remind me I am alone in the world - Thanksgiving, Christmas and my birthday. All three have horrible memories overshadowing them. Thanksgiving was a time my mother used to remind me how useless I was. Yet she refused to teach me how to cook. The Christmas after my mom died, I took a gun out of my daddy's drunken hand. He had planned to kill himself. And birthdays are always shadowed with my Mama's death. She died two days before my 24th birthday. Her viewing was on my birthday.

If anyone has any suggestions on how to get through the next couple of months, I'm listening.

Friday, November 10, 2017

Winter in Fall

My joints are so swollen and sore today! Temperature is 37 degrees in Wilmore with a wind chill in the teens. Even though I had spine surgery this past July, I still have spinal stenosis. In the winter and on rainy days it narrows and causes a lot of pain. Ouch! Lupus is just not thrill to deal with. Even my hands are swollen making it hard to type. Gravity has not been a friend to me as I drop everything I pick up these days. Getting harder for me to even dress because I'm so exhausted.

Well the power chair company filled out the paper work wrong again. This time didn't put the correct date on it. My doctor is choosing a company she believes in, one that will do things correctly. She requested two chair this past September. The other lady had hers within a week. Different company made a difference. 

As for me I'm still falling every other day. Has been ten years since I could feel anything past my knees so it makes it hard to balance and walk. Since my spine issues, my left leg is numb from top of the thigh to tip of my toes. Feel like a wobbly old woman! I still have to walk a little to get the pain out of my spine. Just two steps forward and three back these days. Thankful for the rollator I have. 

So life is difficult this time of year. Lost my entire family when I was 35. Holidays are designed and focused on family. I feel the void even more this time of year. It magnifies. Don't have any desire to attend anything Thanksgiving or Christmas. Sad to say when you're alone being in a group of people magnifies the loss even more. People don't understand unless they've gone through it. Hate to be judged for how I feel even more. 

I refuse to feel sorry for myself. This year I intend to take it one day at a time just like every other day in my life. Two days a year shouldn't overwhelm someone. It all comes down to the choices you make. I choose to see holidays this year as just another day. 

Took a few photos on my walk this past week. Fall colors are beautiful. Sometimes you just have to appreciate the surroundings. No matter where you are or what your circumstances are today, take time to look at the beauty around you. God is truly the greatest artist.









Saturday, October 28, 2017

Dreary Day

Temperatures have dropped dramatically. Rain mixed in has caused me to drop as well. For the past few days I've struggled with a diverticulitis attack. Today fevers and diahrea have returned. It has been a miserable day. And being alone feels magnified when I'm so sick. Wish I could go home today. Back to he south where the temperatures won't be so hard on me. But that requires a financial miracle.

Benlysta infusion and back surgeon appointments are Monday. 

Wednesday, October 25, 2017

Preparing

Holidays are closer than we think. When you're alone in the world, you tend to avoid holidays since it only magnifies the losses in your life. At least it does for me. Around this time of year I tend to shut myself down, wall myself up, and endure. I know what's coming. Thanksgiving doesn't bother me much, but Christmas alone is crushing to me. I've had to endure many Christmases alone and I still hate it. 

With the holidays comes the end of the year. I spent yesterday on the phone with Medicare to try to find a part D plan that was cheaper on my medications. I take fifteen medications now. Even with slightly lower costs, it takes a big chunk out of my small fixed income. Yes I worry about it. Couldn't find a plan cheaper than I have now and their costs are doubled for next year. It may come down to me not filling some of the medications because of cost. Depressed? Yep. 

October seems to have flown by. Our weather man said we would possibly have snow flakes this weekend. Never had a white Halloween before. Temps have already nose dived here and my joints are hurting and swollen. With the rain this week added to the mix it didn't help how badly I feel today. 

Halloween is just another day to me now. All of the neighborhood kids go downtown to trick or treat so I'm not getting any candy. Will be scary movies for me. I have good memories of Halloween as a child. My brother was 13 years older than me so when I went trick or treating, he took me and then we split the candy while watching scary movies. I always think of him this time of year. The anniversary of his death is Saturday. It has been twenty three years, but feels like yesterday. I remember every detail of that day. How I miss him!

So endurance emotionally and physically are on my agenda for the next two months. Prayers and financial help sure would help.

 
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Monday, October 23, 2017

Just One of those Days

Ever have one of those days when you feel so antsy you'll die if you don't get out of the door? Today is that day for me. Woke up nervous. Jittery. In pain (nothing new). It is raining outside and the temperature is about to drop big time. My body is shaky. Still longing to jump out of my skin!

Moving on to the next phase. Habitat built a ramp for me a couple of weeks ago. My next door neighbor took it apart and put it together correctly and added a threshold ramp under the door. Waiting for the chair.







Monday, October 16, 2017

No to Plaquenil

I was taking plaquenil for twenty two years to help with lupus flares. I've been off of it for a year and wish I'd never taken it. That drug has all but destroyed my eyes. I have to see a Retina specialist for five years because of the damage. My eyes burn and hurt so badly from severe dry eye that my doctor said they look like dry clay with cracks. Also add glaucoma to the list. I'm on two different prescription eye drops along with tears. I'm suffering. Today was my eye appointment. Abnormal thinning of the Retina, glaucoma pressure up and was given so many drops today I'm struggling just to see anything.

Just wanted to share and hope this post stops one person from starting it. If you're on it, stop it before you end up in my shoes. Not worth it.

Saturday, October 14, 2017

A Thought from the Heart

Many times I go a week or more without seeing another person. No I don't live in the country (although I wish I did). I live in a small town with a very busy neighborhood. Many days I'm confined to bed. Having no family makes it tougher.

When I saw these little photos I thought of this: Sometimes I wish someone would hear what I'm not saying. Care enough to listen with their heart.

Remember this when you cross paths with others today. You just might be the only person they see. And if you can meet a need, do it.



Thursday, October 12, 2017

Brand New Start

After my back surgery the doctors decided I needed a power chair. Lupus continues to take its toll on my body. While I wait for insurance to pay, the local Habitat for Humanity is building a ramp for me. Until the chair comes it will be easier to get the rollator down. Takes about three months to get the chair.

When I went outside to feed kitties last night the familiar smell of wood hit me just right. Memories of my Daddy came flooding back. He was a carpenter and there was always a project going on. I sat in the rocker on the porch, closed my eyes and remembered. Such a good memory.

There are people everywhere building the ramp, yet I feel so alone in the crowd. There's nothing I can physically do so I'm on the outside looking in. Another moment of being a misfit. When it is over they will return to their homes and families. And tomorrow I will get up to another lonely day fighting this horrible disease. With two new meds added to the ever growing list, I'm struggling financially just to keep up. Still I know who provides for every need and trust Him to take care of it.

The weather is slowly changing. A call in the morning air brought another flare to my body. Not much I can do but rest.

Sunday, October 8, 2017

UPDate



With funds getting to be so tight from new medications (yep, up to 15 now), I've listed some items on ebay. Please take some time to browse and see if you can help. Thanks so much!



https://www.ebay.com/sch/maryjcal/m.html?item=322814143604&ssPageName=STRK%3AMESELX%3AIT&rt=nc&_trksid=p2047675.l2562

Wednesday, October 4, 2017

Awful Week!

It is bad enough all of these meds and bills are choking me and more than my income goes to rent. Today the main credit card I use to pay my meds made a huge mistake. Instead of taking $28.00 out of my bank account they took $289.00 out! Now it will take close to two weeks to fix it. Talk about a massive amount of stress! Add to it the bad reaction I had to Benlysta on Monday, being sick all last week and now struggling just to make my payments.

Sometimes I wonder if it is worth the struggle anymore.

Lord help me!!

Sunday, September 17, 2017

Update After Surgery

I'm adjusting. Slowly but surely I am walking a little more sturdy thanks to the rollator. So thankful for it. Nice to be able to sit when I'm worn out. I saw my home health care team for the last time. Slowly but surely I'm readjusting to being alone every day. This is the hardest adjustment of all. I can take the pain because I live with it all of the time. But adjusting to being totally alone is hard.  It is worse during the holidays, but at least I'll have a couple of months to prepare myself.

I'm slowly adjusting to new ways of doing things. New tricks to feeding my cats, doing laundry, washing dishes. But the lupus fatigue wipes me out before I can accomplish two things. I've learned to be thankful for one.

Slowly but surely I'm adjusting to the idea of getting a power chair and having to use it daily. Won't have it for two to three months because of insurance red tape. Gives me time to hopefully find a kind soul to build a ramp. Since I don't own where I live, it would be better to buy a portable ramp from Lowes, but I can't afford one. And I'll still be stuck pushing the walker or rollator when I go to the doctor because insurance won't cover a lift.

Slowly but surely lupus is beating my body to death. I'm thankful for one day at a time.

Monday, September 4, 2017

Prayers For Needs and Other Things

Tuesday is my next Benlysta infusion at St. Joseph Hospital. I can tell I'm running on empty. Stress, healing, making ends meet,  just trying to function day to day have all drained me dry. Doesn't take much to get wiped out.

Today I realized I've had three surgeries in less than seven months. My body has taken a beating, but hopefully will show some good signs. Two eye surgeries were worth it just to see better through  my right eye and bring the glaucoma pressure down in both. Now just recovering from spine surgery has had its own set of stresses. Expenses, new additions (shower additions, bathroom additions, bedroom additions, etc.) to live with the new limits I now face, the out of pocket expenses from this past surgery, and expense of life in general all accumulate over time. At times it feels like I'm gonna burst. Even though time will heal my spine, life with systemic lupus will continue. I've slowed down to a crawl. If I accomplish one thing a day I'm excited about it. So many times I wish I could go back in time and somehow prevent all of this damage from this horrible disease. That includes financial damage as well. Since that is not a possibility, I just take one day at a time.

 Just hoping for some peace.

For all of those who helped me meet the expense of the needs I've had, thank you from the bottom of my heart. For those who remember me in your prayers, I am so very thankful for you. Thank you for making a difference in my life during all of this!

Thursday, August 31, 2017

Thankful for Ibuprofen

Never really cared for over the counter medication. Never cared for medication of any kind before I became ill. Since having spine surgery four weeks ago I learned what medications work and what don't for me. Ibuprofen keeps down the swelling and the intense pain of inflammation caused by systemic lupus. Had to stop taking it two weeks before surgery because it affects bone strength and development after surgery in some way.

It has been a very painful six weeks without it! Lupus has flared repeatedly along with the pain in my back. When I'd flare my back pain increased. When my back pain increased, I'd have a flare. Endless circle.

Today I saw the surgeon for the first time since having the surgery. So impressed with this doctor. I had told his nurse how much I was suffering from flares without the ibuprofen. The first thing he said was go back on the med since I was suffering so much. With the inflammation going down, my back would feel better.

Also said I was healing fine. The fall I experienced the other day didn't do any damage. So thankful! My legs just melted out from under me and I fell on my knees. They're sore and blackened some, but not bruised. Usually shows up a few days after. And yes they hurt. I think I'm getting use to being the floor's best friend. I've fallen more since January than all the times I've fallen over the past two years.

He gave me x-rays of my spine and I thought I'd let you see what it looks like. He took out a disc and replaced it with a spacer. Put in screws and metal to hold the rest in place.

Even though I'm doing okay in the healing from surgery, lupus has hit me hard over the past few weeks. The damage of now 24 years has taken its toll. The surgeon told me I wouldn't have to use the walker forever because of my back unless I fall. With lupus I have grown more unsteady with standing and walking and have fallen frequently. The surgery may not cause the walker to become a permanent part of my life, but it looks like systemic lupus will. My Occupational therapist is working on other items and ways to manage the changes in my life. Simply put I just can't do what I used to do. My back will heal in time, but the lupus damage won't.

Tuesday is Benlysta infusion day. I can tell I'm running on empty. The exhaustion from systemic lupus has been a huge increase in my life the past two weeks. Rain is affecting me more. Any kind of stress knocks me off my feet. Even though Benlysta wipes me out for a few days, I'm thankful for the benefits I see.

Thank you all for your kindness and love. Thank you for your generous help in dealing with all of this. I couldn't do it on my own.

 


Monday, August 28, 2017

One of those Days!

Just want to scream! The rain has set in here and my body is one huge swell of unending pain! Went to the rheumatologist today. As usual she just took notes and handed me prescriptions. Didn't even ask about the walker I was having to use. I had to bring up the surgery I just went through recently. I just don't get it. It isn't like that office is over run with patients, but she always appears to be overwrought from going from one to another. 

The only benefit from today's doctor's visit was getting advice to use Aspercreme with Litacane. Stuff worked immediately. Unfortunately I can't take a bath in it. Without any anti inflammatory in my system, I'm swollen and suffering inside. Four more weeks of no anti inflammatory medications. 

Was so wiped out when I arrived home only to find a message from my occupational therapist. She was on her way. All I wanted to do was go to bed. It was after 6:00 p.m. before I could rest. 

My next door neighbors loaned me a bedside potty chair that easily fit over my toilet keeping me from having to sit so low I couldn't get up. In fact it was perfect height, had just enough width between arms, and is sturdy. After having to send one back because it was just too narrow, my OT called another place today and hopefully has found one where the arms lower enough so that I can fit into it. This will be a long term problem solver since lupus has worsened the condition of my body. I just can't get up and down like I use to. I called my neighbor today and asked where they bought the one I'm using. Unfortunately it was purchased in 1996 so that model is long since gone. 

The medical staff has requested a power chair for me. The man in charge is coming on Tuesday. Now I have another worry to add to my list - a ramp. Of course the OT thinks a portable one (folds up, made of metal, goes where I go) would be perfect. Isn't covered by insurance. Lowe's has them, but they are in the hundreds of dollars. Not an option. Will be so thankful when things settle down and I won't have to worry about all of this stuff anymore. Prayers will have to do for a ramp since I don't have a clue as to what to do about it. Where I grew up when someone was in need of something like this a church would gather supplies and volunteers to build one. No such luck here.

Of course one more thing had to happen. My vacuum cleaner died. Motor appears to have burned out. Thankful Julie tried to fix it, but it just wasn't worth it. So now I need a new vacuum. When you have an indoor cat you have to have a vacuum.  So today I had to order another vacuum. More money spent I didn't have.

In case you didn't know stress is the number one thing to cause lupus flares, damage, pain, etc. Seems like I've had a month of stress. I just hope September is better. 

Am so thankful to my friend RB who purchased the shower transfer chair. Last night I was able to sit securely and take a bath safely without fear of falling. Thank you so much RB!

Friday, August 25, 2017

Awful Week

It has been an awful week physically, mentally and emotionally. Started with a terrible lupus flare spurred on by inflammation from the surgery. Still can't take an anti-inflammatory because of the surgery so my body is fighting me with overwhelming pain and swelling in joints and all over body areas.

Went to regular MD Monday. He had a physician assistant training. She checked me first and was shocked at how swollen I was. When the doctor came in he didn't even notice. The PA had to point it out. Said he could give me Prednisone to get the flare under control, but would rather my surgeon do it. So walked out as sick as I walked in. I don't see the surgeon until next Thursday. This doctor does two things: write prescriptions and keep records. Problem is so does the rheumatologist. So neglect has not been uncommon from doctors here.

The home health team signed me up for MD2U.com. A physician's assistant sees me once a month at my home taking the place of the regular MD. I still have to see the specialists. She came Tuesday. Was fantastic. Saw how swollen and in pain I was and after hearing my story from the previous day immediately called in a prescription for Prednisone. She said there was no excuse for it. I just cried. So many times I wish I could go back home and resume as a patient to my rheumatologist there. He was the best and I was stupid to move. The home cleaning assistance I received in Alabama was so valuable. Here in KY you have to be 60. No provision for permanently disabled. It has been so hard physically.

Next came the hunt for a used tub transfer chair. My OT said it would be a permanent addition to my life because of the lupus progression. I put out a plea three times hoping someone could help because it cost $60 and not covered under insurance. When I gave up, a friend came through. It was ordered yesterday. Thank you God for divine intervention!!

I also was told I would have to use a power wheelchair due to my declining condition. Thankfully insurance covers it. Waiting for paperwork to come through and someone to come out and measure me for a chair.

And the latest was yesterday's potty chair fiasco. The OT called the surgeon to call in a prescription. One week later no chair. She called again. They had been waiting for me to call them to get an ok. So Thursday was going to be delivered to my door. I went out for awhile to get away. Upon returning there was a message from the pharmacy checking to see if I would be home for them to deliver. Asked me to call. When I did they said there had been a mistake an feed it would be Friday before they could deliver. I was exhausted and decided a nap would be good. As soon as my head hit the pillow someone knocked on my door. It was the chair delivery. He said there was another mix up and they should have called. All of this took place in fifteen minutes. Keep in mind this is a small pharmacy. Few people run it. Not complicated.

Last night I adjusted the legs to put it over the toilet making a sturdy raised seat since it would become a permanent part of my life. Problems again. It was too tight and the seat too small. It was the last straw! Kept me awake from stress all night. I called this morning and told them it was too small. Even looked like a toilet for a smaller person. She told me that chair was designed for someone up to 350 lbs. Impossible! I'm not anywhere close to that number and I can't sit in it. All she could do was call and find out what to do.
What are they thinking?!?! I have no doubt they ordered the wrong size. I can't use it so they have to figure it out. I told her the chair I received was for a smaller person. No way is their weight chart right.

I've had help getting items for safety sake. Much needed help. However I have paid for quite a few things that weren't covered by insurance and it has drained my finances terribly! Sad when you're counting change to make it through to September 3. I feel like I'm drowning.

My next need is finding someone who can build a ramp for the power wheelchair. No money, no clue on how this will go. Churches here don't do things like this. Another thing I miss about Alabama.

And doing this with no family makes it twice as hard. Stress causes lupus flares, flares cause off the chart pain which involves the spine surgery, which keeps me awake, which also stresses me out. Catch 22. Ready to get off this crazy roller coaster and find some peace in the day.

What a week!! The good part has been a taste of fall weather. So crisp and cool in the morning with temperatures in the 50's. Nice cool evenings to sit on the porch when I can.

Will be so glad when everything falls into place. Now if I could just get rid of the stress!

Friday, August 18, 2017

Update and Need

Just an update. I'm home and set up with home health care. My occupational therapist said I need a shower transfer chair due to my unstable condition. Can't find one used and insurance won't cover it. Costs $60. If you can help in anyway, we both would be appreciative.



Monday, August 14, 2017

Home

So thankful to be home. May not be much to some, but I'm thankful for home.

Staples came out today. No numbing the area. Just took pliers and pulled them out. Hurt like crazy. There were 16 Staples.

I'm focused on one thing - rest. So exhausted since coming home. All I want to do is sleep.

Thank you all for the prayers!

For Beautiful Flowers Thank you!

Thank you Rosemary B for the basket of beautiful flowers!! Made my day!!


Wednesday, August 9, 2017

What I Won't Miss About Physical Rehab

Had prayed so hard for the discharge to be a smooth thing since entry was a nightmare. No such luck. Social Worker came in to tell me I would go home Saturday. I told her everything I was told this morning and someone needs to get on the right page. She left and came back telling me I was scheduled by her to leave Saturday but I could leave Thursday if I wanted to do so. I almost told her to stand in front of that door and see what happens. My nerves were destroyed by the time she left this room.

I'm going home Thursday.

1. I won't miss someone messing up my pain medication for three days and doing it again this week.
2. I won't miss a parade of staff coming in here telling me all different things instead of getting on the right page and informing me.
3. I won't miss nurses snapping at me in the morning.
4. I won't miss having to fight for myself because of the mess.
5. I won't miss people saying one thing and doing another or not even backing up one word they said.
6. In reference to five, I hate when people promise things and don't follow through. Just don't bother to mention it if you don't intend to do it.
7. I won't miss being awakened at 4:00 a.m. to fill a water pitcher.
8. I won't miss rude people.
9. I won't miss asking for a medication and having to ask again an hour later because no one showed up. Still waiting on one I requested last Wednesday that never came.
10. And I don't understand how they can repeatedly do the same thing to those who are stuck here indefinitely.

I'm packing up tonight so I can leave here by 11:00 tomorrow. If I ever have to have serious surgery again, I will not accept rehab afterwards. I won't go through this mess again.

UpDate in Rehab for sugery

Was told yesterday I will be done with physical therapy today. Met all the goals. I go home on Thursday. Can't wait to get back to my small apartment where it is quiet, crawl into my own bed and have Bitty sleeping next to me. Will be the best medicine of all. Home health will come in for awhile so I should be fine. Have been doing 90% of everything else here by myself. Just a couple more things to set up at home so I can function like installing a grab bar in the shower, setting up a bar that fits between the mattress and box springs so that I can pull  myself up, find a tall metal stool or a bar stool with a back to sit in the kitchen so I can reach the sink to wash dishes, stove to cook.  May take awhile to find a stool as it will be Goodwill or nothing.

Benlysta was Monday and I had gone two weeks overdue. I can tell this stuff works.  Wiped out from the medicine but had to push this week. Had another day with no pain medicine, but thankfully worked out before flare hit again.

THank you to my dear friend Rosemary for the beautiful basket of flowers! Made my day!!

Will update when able.

Friday, August 4, 2017

Finally Able to Update

I'm finally sitting up in a chair with the laptop on the table. Internet connection has been bad here. Taking advantage while I can.

The physical therapist and occupational therapist have been wonderful. Couldn't have picked a better or finer pair of ladies to get me back on my feet. They listen. A very big point since most people around here don't listen and don't follow through. Sad thing is this goes on in facilities like this all of the time. I'm thankful to have a mental capability to fight for myself.

First three days were a nightmare. Took three days to iron out the medications. Not kind to lupus flares. Joint swelling, inflammation and fever or two have been battling the incision and nerve. Turns out there was more damage once doctor opened me up. The siatica nerve was damaged and they had to repair it. His solution to dealing with pain? Walk four times a day. With the lupus and surgery, I've had double decker pain.

Saturday night not having pain medication took its toll. I was in so much pain my entire body was shaking uncontrollably, which nurses said was not a good thing.

Julie has been a God send to me. She stuck by me through the worst of it, feeds my kitties and loves on them, and does what so little do. She goes beyond prayer and actually does something. Too many use prayer as a passing comment or their duty complete.

The hospital was worse experience. Extreme pain. Calling nurse help took a long time. Once they parked me on the bedside potty, left a call button on the end of the bed and left. Call button hit the floor and I couldn't call for help. Forty five minutes later I was crying help toward the hallway because sitting that long after you have spine surgery was excrutiating.

Sunday here at rehab still fresh off surgery they gave me a suppository and took off. After fifteen minutes I pushed the button. No one came to my rescue for an hour. A young lady happened to get off break and see my light. There had been three aides on the hall that hour and no one responded. I had spent the last fifteen minutes screaming help from my bed hearing people pass by the door and no one came in. Nightmare.

I'm to the point where I can pull myself up, walk with the walker to the bathroom, bathe myself, get settled in the chair in the room. Things we all take for granted has become a monumental task. As of now I'm still stuck here until August 17. I plan to work extra hard in PT to get myself out of here. Missing my kitties. Missing my own bed. Missing the silence. There is a parade in and out of here all of the time and I'm tired of people in general. Something to be said for silence.

I almost forgot the phone incident. When I arrived there was no phone in the room. Someone apparently took it home with them. So for three days I didn't have a phone. It was almost a joke of a situation.

So I'm still in room 206 at The Willows at Fritz Farm in Lexington, KY. My best friend sent yellow roses a few days ago which really brightenened up the room. First flowers I ever had in the hospital in the 23 years of in and out of hospital care.

When you find yourself getting out of bed, taking a shower, getting dressed for the day, be thankful. One day you may be in the same shoes many of us are in now. One day at a time.


Wednesday, August 2, 2017

DON'T TAKE SIMPLE THINGS FOR GRANTED

Hospital was a nightmare. rehab was a nightmare for three days. i will go into more detail when i'm physically able. Doing four hours of rehab a day. stabbing pain down left leg. bad nerve was repaired and pain is herendous, nothing to do but walk. ONE NEED i have is a bed rail that slides between  mattress and box spring to pull up on my bed. Insurance won't pay. If you can help please let me know. photo from walmart


HAPPY BELATED BIRTHDAY KEVIN SPACEY. SORRY I MISSED IT.

Tuesday, July 25, 2017

Surgery Wednesday

Have to be at St. Joseph main hospital in Lexington by 7:30 a.m. No food after midnight. But now they allow you to drink a carb rich liquid to keep you hydrated. So four packets and water tonight and two packets and water chaser around 4:00 a.m. Wednesday. Will float away! This is suppose to help you recover much better. We shall see. 

With lupus you have a tendency of flaring with anything invasive like surgery. Last time I had surgery I was in the hospital an extra two days because of fevers. Just par for the course. 

Sad thing is I've spent the past few days getting ready to go to the hospital. You think I was going on vacation. What to pack for hospital? What to pack for rehab stay? Set up apartment for return, i.e. raised toilet with handles, hand held shower head, bath mat to prevent slipping, washing clothes and sheets, making sure kitty food is available. 

Wish I were going on vacation instead of having spinal sugery. 

But it is what it is and I don't have a choice. If I put it off I may not be able to walk at all according to the doctor. The pain is horrible now. Just can't seem to endure it. I'm always in pain from lupus, but add on the back pain and I just want it to go away. I know the pain will be bad at first, but if there is hope of it subsiding I'm all in!

I'm tired. Stressed. Dreading it. But I do have peace in knowing God holds me in His hands. What more could you ask for?

Monday, July 17, 2017

Sharing the South

I was raised in Southeast Alabama. It was and will always be my home. Recently I stumbled upon a website of a southern writer who happens to write stories about people he encounters in the area where I grew up. Reading his stories have helped soothe my homesick soul. Just wanted to share them with you.

http://seanofthesouth.com


Saturday, July 15, 2017

Pain

One word sums up flares - pain! From being in the heat for two days, stress, lack of sleep, yo-yoing temperatures with rain mixed in have caused every joint to hurt, my body to swell, and my back to hurt even more. I feel like I'm in a pressure cooker!

I go in Thursday for presurgery exam and spine class. My back surgery is the 26th. I look at it with dread and hope. Dread for the long road of healing, rehab and being away from my kitties. Hope of being able to walk the neighborhood again and do so without fear of not being able to get back home. Hope of less pain.

For now I take one day at a time and continue to hope. If you suffer from lupus and have family support, please be thankful. I've been doing this alone for over twenty years. If I need something, I have to pull myself up and get it. Daily activities I took for granted I now struggle with all of the time. Sometimes dishes sit in the sink for days because the pain is so bad I just can't stand up and wash them. How I wish I had a dishwasher! I finally washed clothes last night. They had begun to spilled out of the basket. Sitting outside in the shade of my porch has become very difficult because the heat literally makes me sick. Sunlight does also. Many days I wish I had a family. Wishing doesn't make it come true. So when I awaken every morning, it takes a while before I can move well enough to get up. Then my day is surrounded with trying to accomplish something.

I may not look sick to you, but let me tell you the pain is overwhelming. I spent the last two days having fever of 103 degrees. Too much heat exposure and stress from the days before. I'm wiped out.

You don't know what someone is dealing with on a day to day basis. Don't judge. Life is hard enough for those night fighting disease. Instead do something to help. Sometimes I just need to know someone cares and will listen.

Heat will be soaring into the mid nineties on Thursday. Feels more like Alabama weather than Kentucky. Can't avoid it due to pre-op appointment. I'm already stressed just thinking about it.

I realize this is just a shirt, but the message on it fits the lupus fight. Flares are no fun and we can't always control our environment.


Good From Bad Situations

I know God brings good from bad experiences or situations. Friday He did so for me.

On Thursday I had my follow up from cataract surgery. The doctor told me Medicare would cover a pair of glasses after this surgery and since I had bought a new pair just months before my first surgery and didn't have the money for another pair, I decided this was a benefit I needed She sent me to Walmart because they were Medicare approved to do cover them.

A man took my info and card and went to call Medicare. He returned and told me they couldn't help me and sent me to Bluegrass Vision saying they would take care of me.

I asked BV if they were Medicare approved and could they provide my glasses. They said yes so I proceeded with the paperwork. After waiting for the doctor to come back into the waiting room he informed me that I would have to pay $120 up front and file Medicare myself. I said no and left. It didn't sound right.
I returned home and called Medicare. They said BV had tried to take advantage of me and informed me of a place that would cover my glasses, but I would still have to pay 20%. I called my doctor's office to let them know my Walmart experience. She said they've had problems with the man there before and we're shocked about BV. I shared my experience because I didn't want anyone else to have the same problems. I called Walmart and spoke to a lady in Vision center and found out that they do take Medicare for glasses after cataracts. She was glad I informed her of my encounter. Top it all off with it being the hottest day so far. Heat index was 96 in Kentucky. The heat causes me to flare and two days in the heat made it worse.

The next day I went to Ditto and Music in Nicholasville. They were wonderful! I explained to the lady what happened. She not only didn't charge me for no line bifocals, she didn't charge me a penny for the glasses. I was blessed beyond measure!

According to a friend, they look at their business as a ministry and not just a money making business. I pick up my glasses on Monday.
Turns out the lady who took care of me was told she possibly has lupus. She needed to talk with someone and didn't know anyone who had the disease. I was able to share part of my experience of 23 years with her and hope it helped somehow. Thankful God intervined! Thank you Heather!!

Don't believe in Him? You're missing out!!

Wednesday, July 12, 2017

Just Random Thoughts

I lost my entire family by the time I was 35. Graduated from college one day and was a full-time caregiver for my mama until she died eight months later. My only brother died at 46 of cancer. My Daddy followed him two years later. I became chronically ill soon thereafter. That was twenty years ago. Not a day passes I don’t think of them and miss them terribly. If I’m not going to the hospital for treatment or to various doctors for checks, surgery, etc., I’m thankful for the rare moments someone spends time with me. It doesn’t take much for something to spark a memory and my heart wrenches in pain because I miss them so much. I believe when we lose someone we love a little part of us goes with them. Makes room for compassion for the next soul who lost a family member. We’re a family of sorts tied by loss and grief we never get over. We just learn to live with it as each day passes.

Heat has really surged in KY. Walking outside to feed the kitties seems to be too much. Reminds me of the heat of Alabama. Humidity is up there with the temperatures. Boy do I long for winter! 

Wednesday, July 5, 2017

Summer Flowers

Over all the years I've been in and out of the hospital, I've never received flowers. My friend  Phil and his girls brought this bouquet to me during my Benlysta infusion. Made my day.




Saturday, July 1, 2017

Random Thoughts

I hate the internet. It has taken away the simple kindness we once took for granted. Like beautiful colored envelopes with love and encouragement, with tears and news all wrapped up in heart and written on the page or card tucked inside. I truly miss real letters and real cards. It showed someone thought ahead to remember you. The internet is just another way of making others feel invisible.

I am always amazed at how some people think. They never call or write, but contact you only when they are in town. When you see them, a handful of words are exchanged. Their good deed done, you don't hear from them again unless they come back to town a year later. Not what I would call a friend. Sometimes it is better to shut the door and keep looking forward.

Blessings. I hear people say over and over again how God blesses them richly. They are married, have children and grandchildren, have a great job, etc. I can't help but wonder if I am considered blessed because I have none of those things. Most would say no. I guess it depends on how you measure being blessed. Material things are just that - things. They decay and rot. Children grow up and leave. Spouses tend to have twice the trouble in life.

I was able to stand in the shower and put on clothes today. I could pull myself up from the bed without struggling. I was blessed by three kitties this morning. In the past I was blessed with strength and ability to care for my dying family members. I am blessed today because I have a roof over my head, food in my pantry, and clean clothes. And I'm blessed because I have a handful of true friends who stick by me through hard times and good. So am I blessed by others standards? No. But the only standards that truly matter come from the one who blessings come from - the one true almighty God. In His eyes I am blessed.

Sunday, June 18, 2017

Doctors, Hospital,and Surgeries

Since my last post I've had the cataract removed from my right eye. Great results! Can see better and is healing well. The left eye was done in March and I'm still having pain, blurry vision, and watery eyes. Lupus is to blame since it causes dry eye. Doctor put a plug in the corner of my eye to hold in drops in hopes of moisture being retained. Wouldn't do it again. Driving me nuts.

Saw the surgeon last week for my continuous back problems. Most just say I have spinal stenosis and degenerative disc disease and they can do nothing. This time test results showed L4-5 slipped off and now they are bone on bone. TLIF surgery will be done on July 26. Will be in the hospital for at least three days barring any lupus flares. Then moved to rehab for two weeks. May or may not remove pain, but if I don't do this it will continue to worsen. Pain is off the chart right now. Am having to sleep with a pillow propping up my back.

I'm so tired. Tired of suffering, wondering why I'm still here, why I'm having to deal with all of this alone. I find myself getting homesick more often, just wanting to go home, crawl into my old bed in the house where I was raised and pull the covers over my head. Other times I just want to walk on Panama City Beach at night, listen to the waves and feel the power of God wash all the pain and suffering away! At this point I can only hope to go home again alive. I will go home when this body is dead.

So now I have a month to mentally prepare for major surgery, get Bitty, Buddy and Tom secure for their care, and find a way to buy new gowns. The ones I have were given to me in 2006. They are full of holes from years of wear and not good enough for recovery.

I just wish I had my family.

Wednesday, May 17, 2017

Temps and Sores

Every time the temperatures go up, I break out with a vasculitis flare. The tiny bumps turn to horrible and painful sores. When I think the flare has subsided, I find more. This morning there were ten more tiny bumps just waiting to turn to horrible sores. 

Lupus is a painful disease. I hate it!



Thursday, May 11, 2017

Added Another Doctor

Had an MRI done last Friday. Bad degenerative disc and pinched nerve added to the list. So they're sending me to a surgeon. My back has really hurt the past few months. I can barely stand five minutes without the pain overwhelming me. The appointment is June 12th. Hope he can do something to alleviate the pain. 

On wheels now. Not car wheels. Rollator wheels. It is a walker with a seat. Although part of me is sad I've reached this stage, I'm so thankful to have it. I can sit on it to wash dishes. Can sit down whenever I go anywhere that requires standing. One day I'll graduate to a motorized wheelchair. I hope.

With so many doctor's appointments the cost of gas has risen for me. This month alone I've had six appointments (one more on Monday). At $10 a trip, I've spent $60 just on gas. Also with doctors adding more prescriptions to my already bulging list it has become so expensive just to fill a prescription. I'm thankful for Medicare Part D. Without it I couldn't buy my medication. I'm up to eighteen prescriptions now. Yes, taken every day. I'm just feeling overwhelmed. Sometimes I think it just isn't worth the fight anymore. As this disease progresses over the years it brings with it more and more damage that is irreversible. I'm simply worn out.

The Retina Specialist informed me that I would have to see him for the next five years. Turns out Plaquenil not only damages the back of the retina, it also stores in the system and continues to do damage until it is out of your system. Since I had to take it for lupus for twenty-two years, I will now be fighting the damage of this drug in my eyes. I also found out my retina is starting to thin which also could cause macular degeneration. I guess it will be happy to join dry eye from lupus, glaucoma and vision loss. Top it off with another cataract surgery.

When I received my insurance update for the past few months in doctor visits, I saw where it cost over $7,000 to remove one cataract. The Benlysta I get by IV every month cost $17,000 per visit. If Congress wants to make a difference in our lives, they should regulate pharmaceutical costs. They're making a killing while killing us in the process. 

I am a big believer in the power of prayer. Would appreciate your prayers. And for the person who tried to post something against my beliefs, give it up. You're not getting free advertising on my page. 

Can't believe June will be here before we know it. To me the only thing about days and months reflect back to doctor/hospital appointments on the calendar. I'm so tired and worn out from going to the doctor, going for tests, and going to get Benlysta. If I have to do two appointments in a row, I'm down for the count. Just cannot function. It has been a rough few months. 


Wednesday, May 3, 2017

Welcome To My World

Monday I saw my rheumatologist. I remembered to ask her for WRITTEN prescriptions this time. Just too much stress chasing them down and doing without until her office decides to fill them again. She was concerned about all the sores scattered from head to toe. I'm having a vasculitis attack. Tiny bumps appear, itch like crazy then morph into huge sores. Thing is my local doctor gave me a prednisone prescription (high dose) to help with the chronic back issues I was having. The prednisone didn't even tough the vasculitis this time. All it did was make me gain three more pounds. I hate prednisone! 

She wasn't too concerned. I left with no other prescription to counter attack this mess.

I asked her about getting a rollator, walker/chair. I can only stand five minutes before giving out now. My back issues have grown worse over the past five years. So she wrote a prescription and we found a local place that dealt with medical supplies. Problem was she only wrote rollator balance on the prescription. Has to be more detailed than this for Medicare to cover it. Now I'm in a holding pattern until that office decides to fax another prescription for it. I just can't seem to win. Already approved by insurance. Slow slug doctor's office causes more problems.

I've reached the fever stage of the vasculitis flare. Cold/hot flashes. Very painful. Sometimes I just think it isn't worth the stress. Life is hard enough without dealing with this mess.

So tomorrow I see the Retina specialist to see where the plaquenil is in my eye damage and if any is left in my body. Waste of time I think, but eye doctor insists. Monday I go for Benlysta IV. The following Monday I have to go back to Lexington for a body scan to see if the osteoporosis has returned and to check for any stress fractures. All of this costs gas money and boy has it been expensive lately.

I'm sick and tired of being a professional patient!!

Wednesday, April 26, 2017

Ouch!!

So tired of breaking out! So tired of itching! Another vasculitis flare for the past two weeks. New bumps pop up, itch like crazy and then turn to sores. Such joy! I've been on prednisone for two weeks but only for the back pain. Hoping it would attack this vasculitis flare and remove the itch. I've learned to use hand sanitizer to kill the sting and then vaseline to seal the bump, but the sores still form. 

I hate prednisone! I've gained more weight from this horrible drug over the past twenty three years. Trouble is you can't get the weight off. If there is a pound or two drop, it is time to take prednisone again. I don't take it unless I'm suffering so badly I have no choice. It has become the go to drug from doctors. It also causes diabetes with long term use. Not worth it! Another reason I hate Prednisone is it tears my nerves apart. Every little thing makes me fall apart. One more week of this mess!


Walgreens home pharmacy called again today about my prescriptions. Same sad soul who doesn't speak up, has such a thick oriental accent you can't understand her, left a message on my machine because it was so early when they called. Had to listen to the message three times to get the phone number. Repeat of last week's message. It isn't time to fill my prescriptions. Yes, I know. That's why you put them on file and fill when due. Unfortunately, Medicare patients now don't get the option of going online to choose auto refill or keep the prescriptions on file that are not ready to be filled yet. I have to keep up with what's due and call them two weeks before. Every time I told her something, she would say, "Well, here's what happened..." but she didn't know what happened. Why can't they get more informed people or at least give the option to speak to someone else? Didn't have a comment for why I've been receiving auto refill prescriptions in the mail this week. Received two yesterday. Between the stress doctors, their office and pharmacies put on us it is a wonder how we haven't added a new category on death certificates: Death by Medical field. 

It is spring. With it comes birds, birds, birds! I took my bird feeder down a few years ago because Grackles kept overtaking it. They are scavengers. Will eat anything and everything. Then they hang around pooping on my porch. I have to hose the porch every day. They devour my dry and canned cat food bowls. It has reached the point I can't put out food until Buddy and Tom show up and most times I'm so sick and forced to stay in bed that I can't keep up with when the cats come.  I'm reordering dry food faster. This has been a bad month cost wise with dry cat food. Those birds! Will be glad when they move on to their next stop.

And I'll be so glad when I can throw the prednisone bottle away!

 


Friday, April 21, 2017

Doctor Disappointments

Doctor appointment this past Monday. Just the GP. My back problems have worsened since I've been here. I have a bad disc and spinal stenosis. Now when I stand more than five minutes my legs are totally numb from the top of my thighs to the tips of my toes. (neuropathy in both legs and feet since late 90's). Told the nurse why I was there. Said I couldn't even stand at the sink to wash dishes because my back pain and numbness was so bad.

He said, "Don't do it then."

"WHAT?"

"You know, they say if it hurts don't do it."

They gave me a form to fill out. Answer questions to see if my medication is working on  depression. Trouble is, I told him, the questions were from one extreme to another. "Are you restless, agitated or at peace?"

"Well, if you qualify for one of those things listed in each question, circle yet."

I guess it doesn't matter what extreme you are in.

He's not my favorite person to say the least. Wish I didn't have to go through him before seeing the doctor. My blood pressure when up ten points when he was done.

Doctor examined me briefly and said I would need to have an MRI. Gave me prednisone AGAIN. In Dothan they would give me a steroid shot and set up an epidural to manage the pain. I should have told this to the wallpaper because no one listened.

As I was getting my blood test, the nurse passed by and said someone would call for the MRI, but they didn't know where or who.

This morning I called the doctor's office. Told them I never heard anything about the MRI. It had been five days. They told me it would take two weeks to see if my insurance would cover it.In other words,  I just have to suffer.

Thank you Obamacare for screwing up MRIs.

Went to a play at Asbury last night. They did "The Glass Menagerie." It hurts to sit, or lie down, or stand for long periods of time. So I finally remembered to take my back pillow for support. Pain was still bad, but I wanted to get out and go somewhere that didn't involve doctors. Just have to start taking that pillow with me even though it flattens so badly after a couple of hours of use.

If anyone has a suggestion for a pillow for spinal support, I'm all ears!!

Won't have another doctor's appointment until May 1st. So happy to have a short reprieve.

Easter Reminder

This past Sunday was Easter Sunday. Reminder of salvation through a risen Savior.

I started throwing up Saturday night. Two hours later I was sick as could be. Didn't get to go anywhere Sunday. My next door neighbors had so many family members show up they had to park in my driveway. Just a reminder of how alone I am in this world. My best friend put flowers on my family's graves. So beautiful! I miss them so much. I miss being able to put flowers out.

I asked,  "Wouldn't it be exciting to be standing in a graveyard when Jesus comes back? The Dead in Christ rise first..." Now she'll remember that comment every time she goes to put out flowers for me.

The graves surrounding my parents and only brother are my mother's family. Sad to see so many headstones with no flowers. There are four markers with my family. Mine is beside my brother's grave.

IF you have family, I hope you spent it with them. When they're gone, they're gone from this earth. The ache of missing them is overwhelming.





Friday, April 14, 2017

Eye Surgery

Next cataract surgery is June 7th. Until then I have to get the dry eye from lupus under control. Add another eye drop prescription to the list! When she checked me out yesterday my eyes were so dry the dye showed a desert floor! All kinds of lines!

Although I can't see well out of the left eye, the pressure came down. So the right eye is next. Will be so glad when it is over!

This week started with Benlysta. For three days I was wiped out and in pain. Yesterday I felt great. Today I'm back to horrible pain in arms, legs, and back. Temperatures are going up and I'm doing my best not to turn on the air. A fan works wonders right now. Even so I woke up freezing this morning. Just wish I could go twenty-four hours without pain. Weather yo yo is still affecting me.
Two doctor appointments next week and a break until May 1st.

Have a wonderful Easter. If you have family spend it with them!

Wednesday, April 5, 2017

Doctor Days Ahead

I must say it was so nice not getting up to go to doctor appointments. But now the doctor and hospital trips start again on Monday. 

Benlysta IV is Monday. Still finding myself drained and in more pain by the third week. It is as if I've run out of gas. Feel like I'm moving on fumes. Can't really tell if this stuff is working or not. Then again if I stopped treatment now I'd probably feel the more intense pain just like I did when I ran out of one medication and had to wait two weeks for the doctor's office to refill it. I'm sure it is doing more good than I can tell. If you want to know more about it, go here:  https://www.drugs.com/benlysta.html

Eye doctor is next Thursday. She's going to check on the healing of my eye from surgery and then set a time for the next cataract removal of the right eye. I still see in blurred vision from the left eye. Had hoped there would have been improvement, but glaucoma is also working against me along with plaquenil still in my system. I can tell the cataract is still growing. 

The following week is the MD. Not much of an exam there since they always depend on the rheumatologist to do the most care. Mostly check in, get prescriptions, and record keeping. Wish there were more. 

Weather takes its toll on lupus sufferers. This week is no exception. High temperatures, bad rain storms and possible snow from extreme drop in temperatures by the end of the week. Most of the time change in weather puts me in bed for days or weeks. It's hard when you're doing this alone. 

Would appreciate your prayers and support. Crazy medical bills still coming in. Found out a week ago one of my meds is not covered through insurance anymore. Cost an unexpected $77 dollars. 

Wishing you a wonderful spring.

Sunday, March 26, 2017

Rough Weekend

I'm assuming the fact that I'm still shaking is due to missing my medications for twenty-four hours. Today the tremors are bad. Sleep has been hard to find due to pain.

Just hoping all of this passes soon.

Friday, March 24, 2017

Just A Reminder

Just a word of warning to any lupus sufferer who has a bad memory. Weekly pill dividers are a necessity if you have reached the stage of being on lots of medication. I'm taking fifteen prescription medications a day with some more than once a day. If I had to remember to take them at certain times I'd be dead.

With this horrible disease comes mental issues. Foggy memory is one of the worst. Yesterday I felt so sick and disoriented. Making any decisions was next to impossible. I was shaky from the moment I stood up from awakening. Immediately fell. Not a good way to start a day.

As the day progressed so did the unbearable pain. Went to bed early and when the pain lessened I fell asleep. Woke this morning still feeling odd.

When I took my morning meds I found the problem. I had forgotten to take my meds yesterday morning, afternoon and last night. I don't recommend doing this! Be sure to take your meds if you want to function close enough to normal as a lupus sufferer can.

My system is still off kilter. Still shaking. Even though I'm the only one who takes care of me I still have problems functioning from time to time.

A few weeks ago I had to call the rheumatologist office because one of my prescriptions had not been called in. After days of going back and forth with her nurse and the pharmacy, I finally had to call the doctor's​ office and tell them to call in the prescription because the electronic one never went through. I don't think I should have to chase down my medications. Sad when a doctor's office has to be told what to do. After four days they finally decided I was not the one responsible for calling it in. This disease is hard enough without going behind the doctor (who never takes responsibility for the problems).

I miss my rheumatologist from Alabama. Never had to worry about finding doctors when I have other issues. Never had to chase down medications.

I learned a great deal about medication. Never skip. Will send your body reeling! And make sure you find a doctor you don't have to clean up behind.

Wednesday, March 8, 2017

And So Another Flare

Comes with the territory! Physical stress, emotional stress, change in weather, or no sign at all. Insomnia is a side effect of lupus for me. Two days and nights of no sleep and finally I started to drift off at 3:00 a.m. this morning.

Pain, joint swelling, off and on fevers have been present for this round. Physical stress of having surgery, emotional stress from life in general, and the rain coming in combined for a doosy of a flare. Hurts just to type.

Today I had to chase down my prescriptions. Doctor's office said they sent it in. Pharmacy said they sent request but had no response from Doctor. I believe the pharmacy. Never had any problems on their end. The nurse I spoke to at the doctor's office gave me the same song and dance as the last time this happened. "Oh we sent in the prescription," she said, "you'd better call them again."

I informed her I wouldn't be calling again and told her to call the pharmacy. After all, I've already called both twice today. It isn't my job to chase down my prescriptions. All I ask from the rheumatologist is to keep my medications up to date. When they don't, they blame the pharmacy. Never have they taken responsibility for lack of action. So tired of doing this. Miss the doctor I had in Dothan. Never had to worry about chasing medications or appointments.

Physical stress set in during surgery. Any physical stress causes flares with me. I've been in bed since last week's doctor follow up (except for Monday). Just wiped me out. Insomnia took its turn soon thereafter.

Swollen joints are hard to deal with when you're trying to take one day at a time. Seems to be the road for someone who has suffered from this disease almost 23 years.

My vision is still blurred. Doctor said most people see much better after cataract removal. Didn't work for me. Still don't have a choice in removing the one on the right eye. It is growing at a rapid pace. If I had a choice between losing my sight or hearing, I'd choose hearing any day of the week. Said it will take six weeks to heal up. With lupus it may take longer.

So many days I'm just sick and tired of struggling. Just makes it harder when you have no family.

I've stopped watching the news. Stress of every day life is hard enough without having to determine which news story is true and which one is a lie. So I turned to reading last summer. Read over 40 books while trapped inside from the heat and humidity. Now it is taking me almost two months to read one book. So frustrating.

Life would be so much easier if I had someone else to deal with the day to day problems. Being sick is hard enough. Mixed together it just seems impossible some days.


Thursday, March 2, 2017

After Surgery

I find the hardest part of facing surgery is the fear of the unknown. Never having eye surgery before and knowing I would be awake all added up to dread and fear. The surgery itself wasn't as bad as I thought. The only disturbing part was hearing the machine removing the cataract. Sounded like someone sanding a hardwood floor.

Yesterday I stopped to eat and went straight home to sleep. My only mishap was running into the bathroom door. I have a new respect for those who see out of one eye every day of their lives.

Early morning Dr appointment where the patch was removed and tests done. My eye is jumpy every time I move it. Still blurred and have six weeks of healing ahead. But the pressure that had been extremely high was now perfect. So six weeks of four different eye drops and one week of sleeping with the patch. Still have hope!!

Friday, February 24, 2017

Surgery a Few Days From Now

My cataract surgery is Wednesday at 8:00 am. Most people say it is no big deal. Well it is if you have other health conditions.

 Filled out pre-registration forms on line. Stated a person had to drive you home. No problem. Said someone had to stay with you for 24 hours. That is a problem when you have no family. What they don't know won't hurt them.

Just wish I could go back home.

Thursday, February 9, 2017

Update on Cataract surgery

Saw my eye doctor Monday. After multiple tests, doctor scheduled surgery to remove the cataract on my left eye. She said she couldn't give me any hope in regards to improving my vision because I had too many things working against me: plaquenil toxicity, immunosuppressant medication (benlysta), glaucoma, lupus, and dry eye from the lupus, She also informed me that I run a higher risk of infection and possibility of losing this eye because of all of the above. With lupus my immune system is over active causing any physical illness to go off the charts. Instead of my immune system attacking the illness, it attacks my body. So Benlysta suppresses the immune system. It also opens me up for infections.

Surgery is scheduled for March 1st with a follow up on the 2nd. Not looking forward to this. The cataract on the right eye is now as large as the left. Thankfully the new eye drops have dropped the pressure in my eyes allowing me to have surgery.

This time of the month the Benlysta wears off. The pain is unbearable. Fevers are frequent. Bed rest is a must. My next IV infusion is Monday. Sometimes I wonder if it is worth it.

Appreciate your prayers!!