Wednesday, May 22, 2019

Lupus and Stress!

What do you do when the medical community is stressing you out to the point you can't take it anymore? My doctor sent a referral for me to go to a neurologist to get a second opinion since the last one was rude and incompetent.  You can go back a few posts to read that experience.  Today they called to tell me they could schedule an appointment with the PA. Turns out it went to the other doctor. I'll die before returning to that doctor.  A physician assistant can't read an MRI. Again that office was rude and incompetent. Back to square one.

Yesterday I had to deal with the pharmacy once again. I called in request for refills ten days early because it takes mail order ten days to arrive. This time the doctor's office ignored it and never called it in. I had to deal with the same mess again. So the pharmacy agreed to overnight at their expense. This morning it has not shipped. Had to call them again! They will deliver tomorrow when I'm not home because I go for the Benlysta infusion. It is the nightmare that never ends!! Someone asked why I don't use local pharmacy.  I have to keep up with 32 prescriptions. The mail order calls and emails when medications are due to be refilled.  I can access they online. My mind is bring destroyed by lupus and memory is getting worse. This is the reason I had an MRI and the results are troubling.  I need a pharmacy to keep up with it for me.

So tomorrow I will have medications delivered, but will be at the hospital. They require you to sign for it.  The only way to change time is to pay $6 online to change time. It has been a horrible month with three more prescriptions to refill and my heating bill being so high. Don't have $6 to give them. Who knows when they will be redelivered. Top it off with the fact that I'm out of the medicine.  Let's ice the cake -  my doctor has me seeming of one medication to get another.  The stress is unmanageable.

I never had such bad medical care until I moved to Kentucky.  If you plan to move here make sure you don't have a chronic illness. You'll be in the same boat with me. If I had the money I'd move home tomorrow! This stress is killing me! And I'm still struggling with making ends meet due to extra expenses. If you can help please do! Share this link on please. Any small amount would help.

So desperately need your prayers for physical, financial and emotional help. 

Saturday, May 18, 2019

I'm Worried

Today I'm starting to run on fumes again.  The heat came back with a vengeance.  So I'm trying to sit on the porch for fresh air as long as I can stand it.  This time of the month the Benlysta has run its course.  So I can barely change clothes or get in and out of the shower.  I'm confined to bed most of the time.  That takes away from me putting items on ebay which helps with the cost of my medicine. My sales have been zero this month.

I'm worried.  I have four more prescriptions to fill and have zero money to fill them.  Unless I ask for help I'll be doing without them.  Please help if you can. Pray if you can't.

I'm worried.


Tuesday, May 14, 2019

Please Help

My doctor came today. I'm very lucky to have a medical professional come to my place for monthly care and check ups through MD2U. She has been a blessing to me.  Today she talked to me about her deep concern over my MRI results. To refresh your memory they found a large amount of white matter in my brain that goes beyond my age and illness level.  Doctors are concerned. Now I'm back to worried. Just want to know what to expect. I'll be seeing a new neurologist in the next few weeks to determine what is going on. Waiting for the appointment.

She also decided to change a medication I've been on for years. I'll be seeing off of it the next 15 days and start the new one. My current one was just filled so now I have to fill another with smaller doses and then fill the new one.  Sad but the medication I just refilled took my last dollar set aside for meds this month.  So not only an I worried about the change over process but I'm very worried about where the money will come from to fill the new med and the transitional med.  Stress has beaten me down this month. I can't help but wonder if this struggle is  worth the right anymore.

If you can help please do. It will take off a world of worry from my shoulders. Thank you for your kindness and prayers.

Tuesday, May 7, 2019

Another Fall Backwards

Ever feel like you're taking two steps forward and falling ten steps back? I do every day.  Today I went to another senior and disabled housing  unit. Yet again since I'm not 62 I had to go onto another waitlist. Disabled goes for anyone ages 18-up.  Did the mountain of paperwork and went onto a list that is five years long. I'll be 62 before my name pops up on the list. The first place said the wait is now 3-4 years.  Last summer it was a year. So what do you do when you fall through the cracks yet desperately need the care?  Nothing. Just wait again.

The temps here are still yoyoing up and down so I'm having to go from heat to air. Once it hits 80's I'll be stuck inside again. My body can't tolerate it past 80.  So the air conditioning bill will be soaring soon and I'll be praying to pay that bill. Doctor added yet another prescription to my already exhausted list with another prescription cost. So which refill do I do without in order to fill this one? That's the facts of the situation. The only meds I can't skip or cut in half are the pain meds. They count the contents of the bottles each month.

Two medical appointments this month so expense of $20 gas. Just counting pennies.

Really sad about senior/disabled housing here. Hurts when you just don't fit in anywhere.  Always appreciate any help and prayers given. Means the world to me.

Thursday, April 18, 2019

Update and Easter

Just dropping in for a moment. Yesterday I was wiped out and recognized the signs. Today was worse. My body is running out of Benlysta and like a car with no gas I can push to run on fumes or just stop. Today I just stopped. My next infusion is next Thursday. Until then I'll just have to do what I can or give up. Just the way it is. Lots of things go to the wayside during this time.

Thank you to the few who shared encouragement with me and relieved my stress. I can't begin to tell you how much it meant.

Hope you and your family have a good Easter. Some of my fondest memories go back to Easter. My southern mama's Easter dinner. Going to church with my brother. I'd  say Easter baskets, but I haven't had one since I was ten years old. But they were a favorite. My family has all passed away so I'll be spending another Easter alone.

 If you have family please spend time with them. Cherish the memories you make now when they are gone. You'll be glad to have those memories. They are irreplaceable. Most of all remember why we celebrate. Jesus sacrificed himself for us.

I'm sitting on the covered porch right now with a nice cool breeze blowing. Buddy my 🐱 is  asleep in the rocking chair. My doctor insists  I do this for two hours a day for the fresh air. I can't be exposed to the sun so fresh air it is. Unfortunately.the noise pollution is destroying my nerves. Why does a nine year old boy think he needs to scream like a two year old?! Even though he has been told repeatedly to knock it off, he keeps doing it. Parents teach your kids respect. They won't learn it any other way.

Heavy storms are coming through tonight and tomorrow. With them come pain pain pain! Thankful for the cool spring air today.

Happy Easter!

Thursday, April 11, 2019

UPDate from Mary

We are still yo-yoing in our weather. Finally Spring has arrived in Kentucky. It is 80 degrees today, but will drop down again when the rain sets in. I feel the deep set pain throughout my body. My joints are swelling and I'm feeling so weak right now. I turned a fan on this week for the first time this year. Coming from someone who was raised in the deep South and used a fan year round that's saying a lot. My mother used a fan to soothe me to sleep at night. Until I moved to Kentucky I had a fan running every day. When below zero weather set in with snow and ice I learned to live with a sound machine. It is now the 11th of April. Feels like my days go by so quickly I wonder where time has gone. Much of it is due to memory loss and illness. I realized today it is only the 11th and I have several medications to fill.Right now the meds I need to fill total up to $200.00. I can't afford to fill any of them. Looks like I'll be cutting the ones I have into just to make them last. I know how damaging it is just to do that, but if you can't you can't. Stop praying a door opens for me to move to Sayre Christian village in Lexington. I applied last July and am still on the waitlist. Living costs will be so much less when I can move there. Wish I knew someone who could pull strings to get me in faster. Please pray for this open door. Today is another day of illness. Still feeling from my last Benlysta infusion. The medicine is a chemo drug and has all of the side effects. I also take a pill form of chemo one day a week. The side effects of these two combined with30 other daily medications are hard on the body and the mind. And dealing with all of it alone is nearly impossible. I have a rheumatologist appointment and Benlysta infusion at the end of the month. I've been listing belongings on ebay just to pay for gas to Lexington for two appointments. That's $20. If you could help with this expense and the medication refills i would be so thankful. Praying for God's blessings to come your way.

Monday, April 1, 2019


Good riddance March! It was a horrible experience. Started with a lupus flare, diverticulitis, and strep throat at the same time. The lupus flare never gave up steam and stayed with me through the month. Hoping April is a better month health wise. 

Did my Benlysta infusion last Thursday. Had to wait two hours for the pharmacy to mix it, heat it and send it downstairs for me to get. Those IV's aren't fun. The reaction will be insomnia, nausea, etc. like any chemo drug or work immediately to give me relief. For me Benlysta is my last chance drug. 

I advise every one to have a hobby. Something to distract you from the stress involved with this disease. I used to read all of the time. Now my vision is so wasted away. Never ever take plaquenil. My vision started as damage from it. Now I listen to audio books from Blind foundation. Took me a long time to listen to a book without falling asleep immediately. 

I've been a doll collector and lover since childhood. Have my Baby First step my brother gave me when I was learning to walk. Love her so much. Variety of dolls given to me. Some from a foreign country.  But I've added a new hobby. You Tube reborn dolls. They are dolls made from a kit and painted by an artist. They look so much like real babies and toddlers. Realborns are babies where a photo is used to do a 3D scan and kit made from that scan. I enjoy going to the sites just to wish. Since these dolls cost from $400-$1500 I will never be able to afford one. Instead I WON one! If you are interested in these dolls be sure to visit Sam's Reborn Nursery on YouTube. I won her Owen Awake a few weeks back. He is a Realborn baby. Just perfect. I'll share some photos below. I love him. 

Still fighting fevers and chills. Weather is still beating me up. Went from 69 degrees two days ago to 22 degrees last night. Just miserable right now. Found out my eye doctor he wants me to see a neurologist Ophthamologist. She sees something leaning toward optic atrophy. This is the thing my best friend lost her sight in one of her eyes. Unfortunately it is in both of my eyes. So I see her in July. She will be monitoring my vision loss for awhile. She should know then what is happening. All of this info from one MRI, the one the neurologist, the bad one, said there was nothing in the test to be concerned about even though three other professionals said there was. I'm sick and tired of people. Especially those who think they know it all when they don't have a clue.

Here's hoping for a good month this month. Remember one day at a time. 

Realborn Riley (Owen Awake)