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.
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.
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!!
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.
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
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.
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!