Wednesday, June 29, 2016

Holding my Breath

I realized today that Friday is July 1st. We've almost made it through one month of summer. Not being a fan of heat and humidity (thanks to lupus), I have to spend the majority of my time indoors. I am amazed at how much this disease is affected by the weather - rain and cold cause my joints to swell, heat and humidity wipe me out so much I can barely stand it (plus the multitude of fevers!), and just the jump from one extreme in temperature to another causes a flare like none other.

So how do you make someone understand when you're sick, you're sick? I have been sick so much the past few weeks from the flares caused by my colonoscopy and diverticulitis. Going out in the heat makes it worse. I just can't seem to bounce back and that makes life tough for someone who is alone.

This past weekend an old college friend called me every day wanting to go to lunch or do something. I tried to explain to him how bad I was feeling, but he simply did not understand. I can't blame him for that - he's never gone through this before. I finally pushed myself Saturday afternoon and went to the college reunion barbecue since it was inside. However, Saturday turned out to be a hot one with triple digit heat index. By the time I reached the building, I was so wiped out I could barely stand. It was nice to be able to sit and talk with my friend for awhile, but once we had dinner I was back home in bed. Not only did my joints swell, and my body swell, too, but I had a headache that was unbearable. By the time I could actually settle down to sleep, fireworks exploded outside my bedroom window. I had forgotten the college did fireworks as a celebration to the end of reunion and my place is just around the corner from the field where they went off. So I pulled myself up and sat in the living room with Little Bit since she was so jumpy from the noise. Poor Rascal was already under the covers.

For the past few days I've been unable to get out of bed except to feed the kitties and myself. Nausea and vomiting added to the already wonderful experiences I'd had the past two weeks. A friend told me about her friend who was sick this past weekend. She felt so sorry for her because her husband wouldn't do anything to help her. It was as if she were totally alone. All I said was "I understand how she feels." No matter how much someone knows you are sick, they just don't get how serious the alone part is.

I find myself not wanting to go to gatherings anymore. The reality of life hit me a couple of years ago when it dawned on me the college friends I knew and loved so well were not total strangers to me. People grow up and move on. After all, it has been over thirty years. So I really don't get too excited about seeing people once again. Too, it is hard for me to sit in a group of people surrounded by their families when I am alone. It just magnifies the solitude way too much in my own life. I've grown accustomed to being alone. In fact, I like it. But when you're thrown into a group of people it is hard to readjust to being alone again on a day to day basis.

I've struggled a great deal with this horrible disease. It has taken so much of life from me. But I'm thankful for the small things I can still do even though it takes me so much longer to do them. What other people take for granted, I have to work extra hard to accomplish. Small things to some like washing dishes, vacuuming the floor, or even doing laundry take me more than a day to accomplish and that's if I'm doing well enough to walk and balance myself. I can't count the number of falls I've had this past year. Each one has left me with more areas for lupus to attack.

I still won't let it take the joyful moments I have in my life. I've learned to appreciate small things. I've learned that no matter what good intentions people have, they still won't understand when I explain I'm use to being alone and not having anyone to help me. And I've learned people will never understand unless they, too, experience what I go through on a day to day basis. I appreciate moments I can get out of the house and have a change of scenery. Those times are rare. NEVER ever let anyone make you feel bad for having to measure out your strength and abilities just because they don't understand. Sometimes it isn't worth the trouble of having to repeat it over and over again.

So I'm holding my breath until this hot summer is over. Looking forward to a cooler Fall. Wishing for a cooler winter, too.

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!!!!