Tuesday, June 21, 2016

Yikes Already!

Fevers have set back in again. Sunday my abdomen swelled twice its size. Fevers went up to 103 degrees again. Held on five or more hours and finally broke. Took me long enough but I finally figured out this was diverticulitis flaring. I've been having flares of it since I started the prep for my colonoscopy two weeks ago. The prep and the procedure both sent me into an inflamed system.

I was so weak Sunday night I could barely stand. Every movement I made was magnified ten times. I did fall into the bathtub when I finally made it to the bathroom. Bumped and bruised, I crawled into bed after taking ibuprofen. Five hours later I broke the fever and soaked the bed. My hair was soaking wet.

My water hose decided to explode Monday morning as I was washing off the front porch from the bird poo. They have decided my porch is a great place to rest and grab some cat food while they are there. All of a sudden a balloon appeared in the center of the hose. It exploded all over me. No rescuing that one. So I ended up going with a friend to get another one. Her air conditioning is out in her car and Monday was an especially hot day. So I spent the rest of the day in bed in front of a fan.

By Tuesday morning my joints were swollen and I was completely nauseous. Welcome lupus flare. One thing tends to set off another and add the extreme heat you get a good old lupus flare. Any extreme weather - rain, heat, cold, etc. causes my body to revolt. Seems to be more frequent these days. Although I'm use to having to take care of myself, I do feel sad there is no one there when I'm terribly sick. I also hate the fact my doctors don't seem to care about anything when I tell them. Therefore, I will suffer at home before I call them or go to the ER. I wonder why bother?

I must admit the fevers have been horrible. Just hoping somewhere down the line they will subside. I'm either freezing to death when they peak and have to find a sweatshirt or I'm soaking wet from humidity, heat and the new blood pressure medicine (one of the side effects). There has to be a middle ground somewhere, but for the life of me I've not been able to find it for years.

My college reunion is the end of this week. Temps are suppose to soar in upper 90's. Needless to say, I won't be walking in that heat to attend. Just praying God sends some good thunderstorms to cool down the air. It has been terribly dry here. Although the rain is miserable on my body, so is the heat. So you pick one or the other to endure.

I can't help but wonder what digit does the thermometer reach before I am forced to head to the ER?

Monday, June 13, 2016

Such a Beautiful Post

I wanted to share this. Just watch to the end:



 Remember no man knows the day. Only God does:

"But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father."

Matthew 24:36

Saturday, June 11, 2016

Enough of the Fevers!!

Since the colonoscopy, I've suffered from fevers from 100 degrees to 103 degrees and not being able to break them for hours. My body is worn out. Was it the procedure? The preparation? Did it cause a bad lupus flare? I don't know if any or all the above are correct. All I know is these fevers and destroying my body. Add to it the immense heat wave already hitting KY. If I am exposed to sunshine of any kind, I get a flare. If I am exposed to heat, I get a flare. Looks like I'll be trapped inside my home for the next few months.

I've endured a lot of suffering over 22 years of lupus flares. All of the attacks are not reversible. Damage is done. Some days I think I've just had enough.

When I break out into a high fever, there is no one to get me water or help me walk to the bathroom. Last night I fell once again as I walked to the bathroom. Ram! Right into the bathtub! I'm so sick and tired of being sick and tired.

A new fever is churning. Better head back to bed before I fall from weakness!

Tuesday, June 7, 2016

Recovery Begins

Anyone going through a medical procedure suffers from the side affects. Anyone who has a chronic illness suffers a great deal more.

Sunday was rough. I woke up with a fever of 102 degrees. My abdomen was swollen and as the day went on, it doubled in size. I kept the fever all day while I swallowed the nasty Golytely prep along with ginger ale, apple juice and Popsicles. By the end of the day, I felt like I was dying! Couldn't take aspirin for the fever and since I was freezing due to the temperature, I crawled into the shower and turned on the hot water. Afterwards I put an ice pack on my forehead. Combined it seemed to bring down the temp some. Awoke at 3:00 am to take more prep and back up at 5:00 to finish it off.

Arrived at the dr's office for colonoscopy. Found out from my test eight years ago that I had suffered from colitis. They had retrieved my records from Dothan and asked if I had been treated for it. I told them it was the first time I heard the word colitis.

Note: it was a warm day outside. Unfortunately, it was warm in the exam/prep room, too. Their air had gone out earlier and was working overtime to bring it up. The actual room where they did the colonoscopy was very hot. Even though I was sweating, I still had a fever over 100 degrees. Was afraid they wouldn't do it.

Once in the procedure room, the doctor waited to speak to me before putting me out. She walked up, put her arms around me and gave me a big hug. She said she was going to take good care of me. Most compassionate doctor I have ever met. Too bad she can't be my rheumatologist.

Before I knew it, they had brought me back to the room and the nurse woke me up. I was enjoying my nap and didn't want to wake up, but there they keep you thirty minutes and push you out the door. I've had two previous colonoscopies and both places wouldn't let me go home until I passed gas. They pump you so full of air that they want to make sure you get some of it out. In Lexington, it was never mentioned.

They told me I had another polyp and sent it on to be tested. Also that the colitis wasn't inflamed. They also said I had internal hemorrhoids and my diverticulitis was inflamed as well. In other words, diverticulitis attack was what caused all the pain and fever on Sunday. I'm still having severe pains in my abdomen even though they aren't as sharp as they were Sunday.

I realized today that I had not passed gas at all since the procedure. It was late this evening that it happened. Explains why I'm so swollen still.

Unfortunately, my anesthesia nap was the only time I enjoyed sleep. Last night I couldn't sleep at all. This afternoon was bad, too. When I sat up to stand, my head was spinning. I haven't had that happen in a long time either. I realize it will take a long time to get back to normal, whatever that is. I'll just have to take it a day at a time and take it slow and easy.

So after feeding my feline friends, I'm going to bed. At least I won't fall there!

Saturday, June 4, 2016

Such Joy

This weekend is my prep for a colonoscopy. I hate this stuff. Drink nasty liquid on Sunday and early Monday. Take pills that cramp my system and make me want to throw up.

Normally I have to eat a piece of bread before taking my pills because they cause me severe nausea and acid reflux. So what do I do when I can't eat the bread??!! If I miss an entire day of meds, it will send me into a bad flare.

Sometimes I wonder if pharmaceuticals even think of patients who suffer with these issues before issuing meds for colonoscopies.

I haven't had one in four years. When I was in Dothan, they found precancerous polyps so I had to do this once a year. After four years, the doctor decided I needed to have one done. What took you so long?

I just give up. Doctors don't listen. They don't seem to care anymore so I decided to go with the flow and fight where I have to - like pain medicine issues.

I'm already worn out!


Sometimes I just want to scream when dealing with my rheumatologist's office. I received a call on Wednesday that my pain medication was in need of refill from the doctor's office. I thought she had written it for three months. This office has done this before. Instead it was written for two months and I wouldn't see her again until July.

I called the office and spoke to the nurse. I explained the situation and how they said that particular medicine is okay to refill electronically. She argued with me saying it wasn't. I explained how they had sent several refill requests only to go ignored. She said they didn't get any requests. In the next sentence she said it was sent to the Berea office instead of Lexington. So which one is it!?!?!

I called the pharmacy back and asked about electronic refill on the medicine and to check on the number of refills again. Two. Yes, they refill this med electronically. So I called the nurse back and left a voice mail for her to call the pharmacist and check my info. Otherwise I would be without medication for a month.

Never heard back from them. Instead I got an email from the pharmacy saying it was filled for another month.

Doctors - don't argue with your patients. Just makes them have more flares from the stress you cause. Nurses, LISTEN before you respond.

I've never had to come behind a doctor before like I have with this one. Driving me crazy!!!!

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!