Wednesday, April 27, 2016

And the Saga Continues

It had been almost a week before I realized I never received my new medication. No one ever called in a prescription. So I called the surgeon's office to find out why.

The nurse told me there wasn't a note concerning blood pressure meds. She out me on hold to find out what was going on. When she returned, she said the doctor wanted to talk to my MD here and hasn't had time. He would call tomorrow.

In other words, he forgot.

I received a call from the surgeon's office. They had spoken and will call in the prescription today. Also wanted me to call and make an appointment for two weeks to MD. Also the surgeon wants an EKG so another trip back to Lexington next week.

I'm tired, stressed and wish I could dig a hole and crawl in. Doctor stress is more dangerous than med side effects.

Friday, April 22, 2016

A Friday Post

It has been a whirlwind of health issues, doctor stresses and medication changes.

Last week my rheumatologist's office called. I couldn't answer the phone at the time and no message was left. It was 5:30 on a Friday and all had gone home by the time I returned the call. To me it is just as aggravating as receiving something in the mail that needs to be returned ASAP, but you can't call to ask questions for two more days. I spent Friday night searching for my appointment cards to make sure I had not written down a wrong date. It was 2:00 a.m. Saturday before I could relax and sleep. I assured myself if it was important someone would call back on Monday.

Monday came and no call so I just wrote it off. On Wednesday, I received a letter in the mail from the rheumatologist's office. It said my blood test had some very high marks on it and I needed to call them ASAP. So I called and found out they were in Berea that day. This is one of the most troubling parts of having doctors in KY - they are mobile. Never in the office every day. Always somewhere else when you need them. So I left a message.

After worrying some more and knowing how unreliable this office is in returning calls, I called back and spoke to the receptionist. She was kind enough to check my files and find out what the urgency was. When she found the file, she said my numbers were really high and to continue taking the antibiotic. She said she didn't understand why they sent an urgent letter.

Now keep in mind my appointment was April 4, This is the same day I had a blood test. This is the same day I begged for antibiotics because I had an infection in my lower jaw (people with lupus have very bad dental issues even though we take good care of our teeth). No infected teeth, just infection in my jaw that had run down to my lymph nodes. The infection had caused a severe flare from the lupus. The other instruction was if it happens again to go to a dentist.

This doctor and I have had several conversations about not being able to afford a dentist. No insurance I have covers it and I don't have the funds to see one. So I'll suffer when it happens again and be put in a position for begging for antibiotics again.

The first phone attempt was last Friday and the letter received April 20th. No test results received in the mail at that point. Good to know they would eventually call if there is an issue (pause for sarcasm).  No one ever returned the message I left on voice mail to the nurse.

When I was in Dothan, I was used to having a doctor's office that took care of everything and I just showed up. I never had to chase down test results or ask for assistance, or even have to suggest my own treatment. They took care of that. Also the office went beyond the call of duty when my rheumatologist would go out of his way to help me find resources to pay for my medication the first two years I was uninsured.

I haven't found one doctor like him since. Medically, I regret moving and would be happy to go back just to get the medical treatment I need. Doctors here don't spend enough time with you to know who you are or what you need. You're just a chart of numbers from blood tests.

Yesterday I saw my thoracic aortic surgeon. I had been to this place three times in a course of four years and each time I saw a different doctor who had taken the place of the one before. The first one was wonderful. Took full interest in my history and spent a long time getting to know me. The next time I went back he had gone and was replaced with a doctor who spent five minutes with me. "All okay, just come back in a year," he said.

I was so upset that I let two more scans pass by before I tried it again. Another new doctor had taken the bad one's place. I found out the second one didn't stay long. I wonder why!

Started out with a friend taking me to the visit in hopes it wouldn't be a long one. Low and behold, he had emergency surgery early that morning causing him to arrive late. There was a woman there who had waited more than two hours. She spent the entire time complaining about everyone and everything. Even cursed out the ladies at check in. She was ahead of me in line so I knew once she went back she would complain the entire time and then waste valuable time for everyone else. Thing is she didn't have an appointment.


 Gosh it must be awful to hate everything in the world!

It was two and a half hours before I saw the doctor. He was a 34 year old nerd. The nurse who checked me in had nothing but praises for him. Said he graduated top in his class. She also filled me in on the previous doctor.

My catscan showed an aneurysm 4.7 cm. He said we are not close enough for surgery. Must be 5 cm. He said it was a hard surgery for anyone to endure let alone someone who was sick as I was. His treatment was for maintain a low blood pressure and low cholesterol to prevent the aneurym from growing. My blood pressure was 158/85 yesterday, much higher than normal. Has been a trend lately. Also a high heart rate. So he decided to put me on a blood pressure medication to lower the heart rate and blood pressure. Referred the info to my regular MD. So who knows when they will get around to it. I told him about my surgeon in Alabama who hesitated surgery because of the lupus. This doctor said he wasn't afraid of the lupus.

I asked him if he would be there when I came back for the next scan and he said he wasn't going anywhere. Some hope.

If you're having to go to a multitude of doctors, having them get to know you and what you need is a rare treasure. I didn't know how much until I moved to KY. If I could afford to go back to Alabama and restore my medical care, I'd do it tomorrow.




Monday, April 11, 2016

Yo Yo!

It has been a weather yo yo weekend!! Dropped down to the twenties, snow showers early Saturday morning, and cold enough to wear a sweater and coat on Saturday. The rain has come back in making it a miserable existence where pain is concerned. Sometimes I think it just isn't worth it to keep pushing on. 

I want to be able to clean my place the way I used to, to sit in the sun, enjoy being around people. I just want to be normal, whatever that is. What takes a normal person a few hours to do laundry takes me two days. 

I'm also coming off the doxepin. Thankful to be off that horrible stuff, but feeling the effects of it. I feel like a layer cake. Base is fine, add a layer of lack of sleep, a layer of chronic pain whether it rains or not, a layer of fevers off an on, a layer of aloneness (and sometimes loneliness), and ice it with the struggle of day to day simple tasks. I just hurt inside and out. 

Today is one of those days where I wish I could go home, the place where I grew up. Wish I could walk in the back door and see Mama at the stove, Daddy in the living room and my only brother with him. Wish I could feel that "Ahhhhhhhhhh" you feel when you go home, a feeling that no word can describe. Since they've been gone no where I've lived has felt like home. It has merely been a roof over my head. Today I just wish I could go home.

This week I have a cat scan. Haven't checked the thoracic aneurysm in two years. See a new doctor next week. Seems like that's the way medical care works here. You get a new doctor every few years instead of having a choice of staying with someone who knows your history. Many of them don't care enough to get to know you. Nothing like the doctors I had in Alabama. I miss my rheumatologist. 

I miss so much from home. One thing you learn when you move away is that people are all the same. Most are just focused on their own family. I've learned many things by experience. The rare person who cares enough to stick by you is a treasure. They are few and far between. I'm thankful for the few. 

When I get sick like this, I tend to feel sad. Today is just a sad day. Time to go to bed and pull the covers over my head.


Monday, April 4, 2016

Another Day at the Doctor's Office

It was hard to move this morning. Swollen painful joints from the yo yo weather added to extreme brain fog from the new med made a difficult examination. She decided to remove the doxepin. Hallelujah! I just haven't been able to function mentally or physically. It has been a long hard three months.

A new infection set in my right jaw. No infected tooth this time, but infection in the gums and traveling down to swollen lymph nodes. After going down a list of helpful dental places, I settled for antibiotics. Dental problems are frequent with lupus sufferers. I've had my share over the years. Problem is Medicare does not cover dental.

So the doctor added back the former meds and added an antibiotic. So my body will have to readjust again.

This doctor moved to a new location with picture Windows in the exam rooms. I watched Canadian geese swim with their babies in the man-made lake. And on the way home it was nice to see the trees, bushes and flowers blooming.

Still a bit chilly here and I'm still wearing long sleeves. Hopefully the weather will even out soon and stop kicking my butt.

Wednesday, March 30, 2016

All In the Eyes of the Beholder

I've often been told beauty is in the eyes of the beholder. I guess to some extent that is true. Most of the time we overlook the beauty in front of us. I'm not talking about flowers or trees or birds. I'm talking about unexpected events that occur in our lives only to be admired when they have passed. Hopefully those events won't pass us by without notice.

Today a frail older lady knocked on my door. She was asking me to help her. So I asked how I could help her. My mind jumped to all kinds of conclusions, but it turns out, none of them were true. She said she needed to go see her doctor because her son wouldn't give her her medicine. She said she needed to go now because her stomach was hurting. I asked all kinds of questions hoping I'd hit on one that would reveal more to the story. I told her the doctor's office was on the other side of town and I didn't have a way to take her over there. She said she was going to walk, but I told her it was a far walk and too warm since she was wearing a sweater.

She sat down in the old rocking chair on my front porch. I stood beside her when I noticed a man crossing the street pushing a wheelchair. I asked if she knew him.

He walked up to my doorstep and apologized to me. Turns out this was his grandmother who had dementia. She was confused, he said, because they just came from the pharmacy where a new medication was filled, but she could not take it until nighttime.

I told her that medicine would make her very sleepy if she took it now. Maybe she should wait until nightfall. She thanked me and walked away. Her grandson followed her as she walked down the street, turned around and walked the other direction. He was patient with her. Something I hadn't seen in today's generation at all. You could tell he was caring and waited for her to make up her own mind to go home.

She was confused and looked for the first door opened to her. I'm glad it was mine. Dementia is a horrible disease. My mother suffered from it at the end of her life. She didn't know who I was. She was more difficult to deal with in the end. I honestly can't say I had patience with her.

That young man did have patience with his grandmother. He stood by her side until she was ready to go home.

Dementia comes to many people. Lupus patients face the end with dementia. It frightens me to think I'll be all alone when and if it happens to my mind. She was blessed. She had someone who loved her, took care of her, and had the patience needed to wait. To me it was a beautiful sight.

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Doctor's visit is on Monday. Rheumatologist. Hoping to redo new medication. I also have a cat scan for the aortic aneurysm near my heart. New doctor appointment follows. Turns out the old doctor left shortly after my last appointment two years ago. 

Monday, March 21, 2016

Return to Winter

It is Spring, but this weekend you wouldn't know it. Chilly temps always plummet me to lupus flares. Rain, up and down temperatures, stress, you name it. Has been a rough few months. 

The doctor changed my medication by adding another pill. It is so strong I have to take only one. Choice is sleep (and sleep and sleep) or not sleep and have flares. I feel what a hangover must be. My brain is more muddled than ever. 

Chest pains have returned to my world. So today I called the thoracic surgeon's office. It has been two years since my last aneurysm scan. I found out the horrible doctor I had left. Hooray!! But now I have to get use to another new doctor and this one is fresh from his residency. Their procedure is set up tests and appointments and mail them to you. Not sure why a phone call wouldn't help. So I wait. 

I wish there was something good to share with you, but my days have become so dull and listless just like me. Just trying to make it through a day one step at a time. Miss being energetic and busy. Haven't seen those days in a long time. 

Chilly night ahead with a temp of 27 degrees. Kitties all snuggled in and I had to turn on the heat again. Hopefully tomorrow will be different. Hopefully I can do small things like clean off the table or pick up my bedroom. It is the small things I long to do now. 

Don't take the small things for granted!

Sunday, March 13, 2016

Short Post

Haven't posted in awhile because I've been so sick. Doctor changed my medication and I'm either sleeping all of the time or not sleeping for days. Haven't had a normal day for months.

Most of the time I'm up long enough to feed the kitties and then back to bed. Not much of a life.

And the new medication costs more! So tired of choosing between groceries or medication.

Hoping for better days.