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!

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!!

Monday, February 6, 2017

Lupus Flares and Update

Lupus flare hit me hard on Friday. Throwing up, severe pain, fevers, etc. Etc. Etc. Emotional upset, stress from neighbor problems, death, and life alone in general just all exploded like a volcano. Been in Bedford three days only to get up today to go to an eye doctor's appointment to do presurgery tests for cataracts.

No hope was given by the doctor to restore sight due to plaquenil toxicity, lupus, and glaucoma working against me. Hoping the removal of the cataract will lower the eye pressure and prevent blindness for awhile. Surgery is March 1st for left eye.

The neighborhood stress! If you wonder if your bad choices have any effect on others, YES IT DOES!! The police have been to the duplex next to me four times since February 1. The police now make it a point to patrol this neighborhood every day several times a day. Problem is they never take the problem away. I made a statement recently saying I wondered if I'd ever find a safe place to live. A friend responded with the question, "what is a safe place?" Spoken like someone who has never experienced unsafe places. I said a safe place doesn't require the police every other day!

Add all of this to the life of someone who is physically ill and whose life is going down hill every day and you have hope fading fast.

I have no patience with cry babies  in the news, fools who want to argue, and people who have never suffered pain. Sometimes I just want to tell Shut up already!

Trust me when I say screaming doesn't help! 

Sunday, January 29, 2017

My Heart Is Destroyed!!

My best friend in all the world died this morning. Rascal was 17 yrs old, but so healthy. No sign of what was to come. I went into the kitchen to get something and when I went back to my room, he was gone. Just that fast. He took half of my heart with him. Was two hours before my next door neighbor could bury him. So I sat with him, wrapped him in a blanket and petted him. He was loving on me just a few hours ago. Walking all over me while I tried to sleep. Typical behavior. 

Rascal ran through my door when he was about three months old. It was a very hot day in Alabama and he was searching for shelter and water. Immediately he was my baby. He's been the one soul I could tell all my troubles to, has seen me through so much loss, has been my faithful and true friend. He wasn't a pet. Rascal was part of my heart. 

I am so devastated. And I officially hate the month of January. Anniversary of my mama's death, her birthday, my birthday, and now Rascal's death. If I could cut it out of the calendar and skip it altogether I would. 

I love you my dear friend. Always.



Friday, January 27, 2017

January

This is a hard month for me. Anniversaries of my mama's death, her birthday and my birthday. Thankful this month is almost over. Then I wonder why it goes by so fast. 

My best friend was here for almost a week for my birthday. We hit a lot of Half Price Bookstores, some thrift, saw "Fantastic Beasts and Where to Find Them," ate birthday cake and dinner and rode a dinner train. Worn out. They day she left I went to bed and slept. Still worn out. It was warmer during her time here and now the cold temperatures have set in again. My hands are frozen as I sit here writing. Snow flurries fell today. We're suppose to have some sticking snow on Sunday. Time will tell.

The RJ Corman Dinner train (My Old KY Dinner Train) was wonderful. Beautifully set tables inside a 1940's car. Traveled a strip of tracks that belong to them. Saw different historic markers along the way like Jesse James safe house, wooden trestle that survived the War Between the States, a train depot where "Stripes" was filmed, etc. Here's the link that tells all about it: 

http://www.kydinnertrain.com/history.html


A list of Historic Points: http://www.kydinnertrain.com/downloads/MOKDT%20Points%20of%20Interest%202016%20back.pdf 


So thankful to have been able to experience this. Have always wanted to ride a train. 

Spent the night away from home. The room had a jacuzzi tub in the bathroom. Was so tall I thought I wouldn't be able to get in. The next morning I sat on the side, pulled both legs over and lowered into the tub. Was the best bath I ever had! The heat and jets released all the pain in my body if only for a short time. The tub had grooves cut into the side so that I could hold on and pull up. If I ever win publisher's clearing house, I'm getting a jacuzzi!

------------------------------------------------------------------------

While I was outside feeding the kitties late yesterday, three cop cars arrived at the drug house two doors down, body armour on, rifles drawn. Ambulance showed up and left after ten minutes, but the cops stayed over an hour. Of course they left without anyone to arrest. I will never understand this. WHY? While taking out trash, I heard them talking at the end of the driveway saying they could have arrested both of them for the bruises and cuts on them. Then why not?!?! So sick of these people. 

Thursday, January 12, 2017

When You're just too sick....

On days I'm just too sick to get off the couch, I cuddle with my kitties. They say animals are good to lower blood pressure. Good to help with illness in general. Rain is pouring outside and my outdoor kitties are protected in their own little crates on the front porch. Warm, clean blankets inside. But inside Rascal and Bitty always know when I'm too sick to move. They always curl up near or on top of me. I'm amazed at how they just know on bad days.

So when you're too sick to get off the couch, I hope you have some animal love to encourage you.







Yo yo Up!

The crazy weather is turning to the 60's, back down and up again! I can honestly say this weather is killing me! Everytime the pressure changes the pain increases. One day I awoke to a swollen right leg and foot. Barely able to balance on nerve dead totally numb feet (which is every day). So I pulled myself along the wall and cried the pain away.

The cold did damage to my heating bill. Yikes!!  Thank goodness for cat body heat!! So I will put off filling a couple of prescriptions until next month. Freeze or medicine. Bad choice either way. Cost of meds went up again. Fifteen bottles get expensive.

My birthday is January 20th. Born the day JFK was sworn into office. Glad to see a new person in office that day.

Many memories co email this month. My Mama died January 18, 1985. Two days before my 34th birthday. Her birthday is January 25th. Sadness has been a shadow over January for a long time.

Rain send to have settled in for at least two weeks. Enduring the pain will be tricky. Hoping the next Benlysta infusion will help with the pain. One day at a time.

Friday, January 6, 2017

A January Day

January showed its presence yesterday. Snow falling, temperatures dropping, single digits tonight. We really didn't get much accumulation. Maybe an inch. Still icy. Was a slip sliding experience to take out the trash awhile ago.

The place where I live is bitter cold. Block walls hold in the cold unless the heat runs nonstop. So I dress in layers now. Two heated throws wrap around Bitty and Rascal to keep them warm.

It is just bitter cold. With this crazy weather pattern I know it will warm up in a few days. Trouble is it dives from 60's to teens in a day or so. HARD on anyone with a systemic illness. I woke up this morning with so much pain. My body is still stiff and sore as if I lifted weights. Cause? Drop of temperature. Can't close my right hand because the joints are so swollen.

So not much gets accomplished here when the cold sets in. If I can accomplish one thing a day, I've succeeded.

Today I'd like to be home in Alabama.