Wednesday, May 25, 2016

Searching for a Goodnight's sleep

My mattress is only a year and a half old, but my body hurts from not getting a good night's sleep. It is a good firm mattress. But since it doesn't accommodate the painful parts, the parts that swell and sharp stabbing pains that shoot throughout, I can't sleep well. I have another bed in my apartment. It is the bed my parents bought when they were married. The box springs and mattress are over twenty years old. It, too, tears my back apart.

When I get up in the morning, I cannot walk well for two hours. When I have to go somewhere I have to get up two hours earlier just to be able to walk and move the pain loose.

I've been suffering from lupus for twenty two years now and the damage it has done to my body is immense. Something as needed as sleep is a luxury now. Sad thing is lupus patients need 8-10 hours of sleep just to reduce flares and damage. I can't remember when I've had 8 hours.

I'm hurting too much to sit in the recliner, rest on the loveseat, sit in a rocker. I'm in so much pain and stiffness is so bad that I cannot pull myself up when I lie down. If only I could find the perfect bed. If only I had a sleep number bed. I've heard how wonderful they are for those who suffer with chronic illness. But how on earth could I ever afford a sleep number bed? The cost of living is hard enough added on to twenty prescriptions to fill. I'll just have to wish and dream for one someday.

Until then I am thankful for the rare few hours I can sleep. It is with sleep I leave the pain behind and hope for peace and serenity.

Oh gosh how I hurt!

Friday, May 13, 2016

Where did April Go?

I can't believe it is already May 13th. Where did April go? They say time flies when you're having fun, but for the past few weeks, I haven't been having fun. Struggling through the crazy weather patterns in KY. Heavy rain, very warm temps dropping to freezing soaring up again. This weather has literally beat me up. The pain is worse when the temperatures drop. Tomorrow night temps are dropping to the 30's again.

The only time I've been out is when I go to the doctor. Lately I go to the doctor more often. Now I'm scheduled for a mammogram and colonoscopy. I've been here four years and the doctor noticed finally that none of these things have been done. My last colonoscopy in Dothan showed precancerous polyps.  Who knows what they'll find this time.

I have many thoughts on cancer. First, if I am ever diagnosed, I don't intend to take chemo. I experienced what my brother went through when he had to go through chemo. It didn't prolong his life. Just made him super sick and weakened his body more. So I don't intend to do this. So why have a mammogram or colonoscopy? It will only tell me what I have or don't have. If I had a family, any family, I'd consider it. But being alone in the world doesn't exactly give me a desire to prolong the inevitable.

I'm so tired today. Still adjusting to the new blood pressure medication. Have been able to sleep better the past two weeks and wonder if it is due to the side effects. Just thankful for sleep.

The crazy black crows are back this Spring. They have been eating me out of cat food. I've already gone through two bags this month. Forget about hiding the bowl. They can sniff it out. Add to the issue that Buddy and Tom do nothing to run them off. They just sit on the porch and watch. Buddy is more interested in chasing other neighborhood cats and dogs. Poor Tom is just so feeble now.

I feel the rain coming in. My joints are swelling again. Found it hard to hold a needle and thread last night. It is hard when you suffer from a disease like Lupus, plus the other conditions spawned from it. Life is hard enough dealing with illness, but add being alone and you find it nearly impossible.

How on earth do people make it through without faith?!

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.


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.