Friday, August 30, 2013

HEAT AND LUPUS FLARES

Heat is not kind to those with lupus. It has been terribly hot the past few days. It has almost felt like Alabama heat here in Wilmore. High 90's and humidity. The stress from dealing with rude people (customer service) added to the extreme heat and humidity, lack of sleep, have all come to a head for me. Yesterday my abdomen started swelling. Joyful lupus has decided to take it out on my digestive system.

By the time I arrived back home from my Bible study last night, my abdomen has swollen so badly that I could barely get undressed. When this happens, and it has happened more times than I could count, there is no lying down to sleep. Propping up on pillows or sitting in a chair are the only ways to rest. There is too much stress on my lungs and abdominal area. I'm so tired!

We take so many things for granted: being able to stand in the shower, brushing our hair and teeth without pain, lying in bed at night. When I have a horrible flare like this, I can't do any of those things without severe pain. Added stress just makes it worse. So many times I wish I had someone who would buffer the stress of life for me, be there when I was unable to walk to the kitchen just to get something to drink, or just hear a voice that wasn't on tv.
My greatest fear is dying alone. I don't want to die alone, but unless I'm in the hospital before I die, chances are likely I will. It is just my reality.

Heat go away! Humidity go away! I can't wait for the cool air of Fall to waft in and take away the swelling. I want the opportunity of walking outside my door and being able to walk around the neighborhood again. It has been a long summer. I haven't been able to go out for a walk since June. The summer months make a prisoner out of me. They are just so hard on my system.

I'm thankful for Rascal. He knows when I'm sick and sticks by me. Sweet feline. If only people were that faithful and caring.

Today would have been my Daddy's 92nd birthday. He has been gone 17 years now. I've been alone that long. No family. Drudging through life with all of its problems. Dealing with this illness. Facing dreaded holidays alone. It never gets easier.

I see fireflies outside my window. The heat doesn't seem to chase them away. I will miss them when Fall comes, but I won't miss the heat.

Wednesday, August 28, 2013

Been A Hard Week!

Word of advice - Don't ever sign up for Dish! No local customer service. If you need a new box, they will "send it to you in five days" at your own expense. Then you have to pay $$$ to send back the old box. When you call customer service, they just give you the run around and raise your blood pressure! I chose them last summer when I moved to Wilmore. Cheap special deal. When you're sick 90% of the time and spend more time inside than out, when you're alone 100% of the time you're stuck inside, the tv keeps good company. Without that company, I'm lost. It is just nice to have someone talking to me during the day and to know what's going on in the world.

But my experience with Dish the past week has left a bad taste in my mouth. Don't EVER use Dish!! They were rude, disgusting, and never resolved the problems. I hung up in tears after the third phone call today. Now I'm stressed out and had already been sick from a lupus flare. They just iced the cake!

If I had a  converter box and antenna, I'd drop all tv service and use it. This is just ridiculous. I'm dumping Dish soon. No sense in all of this stress.

If anyone has a converter box and antenna sitting in a corner, I'd surely appreciate the use of it!

Thursday, August 22, 2013

Life Is Hard Enough

I am lucky to share a Bible study with two other ladies on Thursday night. We're in James. Tonight we talked about the power of the tongue. Amazing how a small spark can start a powerful blaze isn't it? A few words can literally destroy someone or can make a difference in their life. Just a few words.

A few words from someone's mouth can destroy someone else's character. Just a few words. Sometimes it is best just to keep your mouth shut and not say any words at all.

Being in a position where I worked from the time I was 15 yrs. old, worked a full time job at night and went to college during the day, worked a full time job while taking care of each family member before they passed away, and then losing my own health, I've been pushed down the ladder of society's view of success. I've been judged repeatedly because of the position I am in (and not of my own choosing either). I can tell you many words have destroyed me over the years. The words that have hurt the most have come from fellow Christians.

Since I've been beaten down by words from my own family growing up, in the world while I fought for a better life, in the medical arena while caring for my family, and now in my own life (and medical field) just to make it day to day, I've learned one very important thing: don't judge the person in front of you. There is no possible way that you know what this person is suffering from, dealing with, has gone through, or has to face on a day to day basis. Passing judgement on that person and flippantly spitting out hateful words are a dangerous combination, especially to the life you just mowed down.

Think before you speak. If you can't make a difference, shut up and move on. There is no guarantee your life won't suffer some consequence down the line where you are put in the path of someone's destructive judgement. Life is hard enough.

Make a difference or move on.

Friday, August 16, 2013

DOCTORS MAKE ME SICK!

Sometimes I wonder! WHY do some doctors care, check out the problems and actually search for solutions and some doctors just push pills? I have a rheumatologist who pushes pills.

I saw my rheumatologist today. He is as different from my AL rheumatologist as day is from night. Goes down the list of what my complaints are, but doesn't address them. Just pushes pills. Doesn't try to find out what's causing the new problems. Just pushes new pills. Doesn't care.

When I walked in today, I found out I had lost ten pounds since my last visit three months ago. I'm thrilled, but with all the meds I take, I don't normally lose weight. I haven't done anything different to lose weight. My blood pressure was way too low.

The woman who brought up my medication list only read off the list that this doctor prescribed. I told her she was missing more than half the list. This happened the last time. "Oh, the computer pushed them down to inactive."

So we had to relist them again as active. Some of the meds I didn't recognize because I take generic. So I asked what the generic was for the medication she spoke about.

"I don't know. I don't know anything about the meds."

"Okay. Now what do we do?"

I came up with the idea of looking at the dosage. At least we had that to go by. SCARY!

Doctor comes in and I tell him about the vasculitis attack I had. He didn't respond. Vasculitis is inflammation of blood vessels and dangerous. He wasn't interested. Told him about my hair falling out by the handfuls. He check and saw what I said was true. Offered no solution, but asked if I was taking my thyroid medication. Told him about my extreme fatigue. He just grunted.

I told him about my cat scan where they were looking at my gall bladder. I told him about throwing up and diarrhea once a week for four weeks.

"Did it finally stop?"
"Yes. They blamed it on lupus finally."
"Could be."

I told him about the extreme swelling in my feet and legs. Nothing. Told him about how my arms and hands went totally numb for days. Nothing.

Told me to get onto the table. Did not help me. I have to pull myself onto the table. Almost fell. No balance. Still weak. Barely touches the areas I spoke of.

I asked what he thought was causing the issues and what could be done about them.

He asked if I was still taking my vytorin.

"Yes, for the aneurysm."
"Maybe we should change your antidepressant and choose one that has more affect on pain."

"No, I've been through the gamut of those and only because lupus caused a chemical imbalance. Personally I wouldn't want to be on one in the first place. Shouldn't you be looking at something to reduce the inflammation in my body?"

"Oh, yeah. Okay."

He prescribed an anti-inflammatory. I didn't want another pill. I wanted him to find out what was going on in my body. I wanted him to care enough to explore. He just added one more expense to my already exhausted financial burden.

He left the checkout sheet on the desk and walked out. Left me sitting on the exam table to ease myself down without any help.

I've given him enough time to get it together. This is a horrible disease. It is destroying my body. I need someone to monitor it and take action when it is active. I don't need someone who doesn't care.

Time to look for a new rheumatologist. I am so sad today.

Monday, August 12, 2013

I Don't Understand!

Update: So thankful to have gone to the grocery with my friend this week!

This seems to be the front comment of my prayers these days. I DON'T UNDERSTAND, LORD! Why do people not care about others who are alone when they are so blessed with family? Why do people not understand how hard it is when you're so sick and struggling? Why don't others reach past their secure homes to help someone else who is so alone and lonely? This week my small Bible study pointed out in James that if you know a need and don't do something about it, it is a sin.

Friday I prayed for enough money to buy groceries. My pantry was getting so bare and my pennies were, too. How I prayed for enough money to get something good to eat! Saturday I was blessed with a visit from two sweet ladies from the local church who brought me a card and stuffed animal. They wanted me to know I had not been forgotten. They left and I was still hungry. I was thankful for the visit.

"But I don't understand, Lord. I was hungry and you sent me a card and a stuffed animal."

I dug out a can of refried beans, found a carton of sour cream that had been left in the fridge and an old bag of flour tortillas (almost a year old) and made a burrito. So good for two days. This morning I awoke so hungry!

"Lord, I am so hungry! My pennies are low. Please help me!"

I walked outside and found a bowl of three large tomatoes and two cucumbers from my next door neighbor's garden. She will never know how much I needed them right now. That was the best tomato sandwich I had ever tasted! Thank you, God!!

So many things I do not understand. One thing I do: if someone is hungry, I will give them whatever I have. Same goes for a starving animal. I know how it feels and cannot bear the thought of another feeling the same. Please, Lord, don't let me ever be unaware of someone who is hungry and in need!

It is the heat of August now. My joints are swollen from the rain and heat. I haven't been able to go outside and walk. It is impossible for me to walk a block let alone walk to the grocery store. If I do not rely on a friend, I cannot go to the store. Another obstacle. People take so much for granted.

Hmmmmm.....what I wouldn't give for a Papa Johns BBQ Chicken and bacon pizza. That, my friend, is a luxury.

James 4:17 "If anyone, then, knows the good they ought to do and doesn’t do it, it is sin for them."

Thursday, August 8, 2013

Lupus Pain and Swelling

Went on a road trip Tuesday with a friend to take a friend of hers to the doctor in Somerset, KY. Sitting for a couple of hours one way and then couple of hours back reminded me of how much my body swells! By the time I arrived home, my right foot had so much inflammation in it that it felt like it was broken. Both legs were so swollen I could barely wrap both hands around one calf.

It has taken two days for the swelling to go down. Don't ya just love systemic lupus?!?! No matter what I do, I pay for it...literally. It was worth the trip to enjoy time with good people, get out of Wilmore  for the day, and see beautiful scenery.

I'm still having pain from some of the remaining swelling, but it comes with the territory. As for the pain in my foot, well, I can't feel my feet except when inflammation hits the bone. Then the pain in the bone radiates throughout my body. I've learned to do what I have to do.

While wandering around ebay the other day, I saw a treadle sewing machine. I've always wanted one. Even though I can't feel my feet, I still have to walk on them. I concentrate when I walk. It is easier when I'm sitting to focus on pushing a pedal. I miss sewing. I had hoped to be able to make some skirts this summer, but no working sewing machine. My vision has grown worse and it is just too hard to see well enough to thread a needle. Even harder to rethread it over and over.

Rough night last night. Just can't seem to sleep more than two hours before waking up. Think it is coming from the swelling. So I get up and "wander" around my place, the best I can, and wake Rascal up for a change. I walked outside last night and found Buddy on the porch. He had a friend with him. A rough looking old tom cat. Sweet thing. Was hungry, too, so I fed them both.

Doctor's appointment rolling around next Friday. So many times I've almost pushed that appointment up. I've suffered vasculitis, digestive issues, lupus rash break out, joint inflammation, etc. , etc., etc. and just suffered through them all. I'll list them when I go and will hear, "Why didn't you come in sooner?" No, I won't have an answer for that question. I guess I've suffered for so long that I just don't know when to go in anymore.

Time to get up and move around. My legs are swelling again. If I don't move soon, I'll be in pain once again. Oh horrible lupus, go away!

Saturday, August 3, 2013

LUPUS FATIGUE

Extreme lupus fatigue! It has been a week of extreme lupus fatigue. Most will say "I'm tired, too! What makes this any different?"

Glad you asked. Systemic lupus fatigue is different. It feels as though someone has taken your body, wadded it up like a wet rag and wrung it out. Doesn't bounce back with rest. Just leaves you with no strength at all. You're too tired to walk across the room, too tired to chew. Too tired to do anything. The fall I took a couple of weeks ago sent pain through my body. I knew the flare would show up soon.

I tried to explain how it felt to walk on feet and legs you couldn't feel. Today I thought of a great description. The next time your feet "go to sleep" so to speak, immediately stand up and try to balance. Walk on them. That is how it feels.

I've not been on the internet much this week because I have been feeling so bad. If only there was a magic wand to wave to clean my home, but there isn't. So the stacks will remain, the floor will be vacuumed later, clothes will be hung up at a later date. It is so much easier for people to pass judgement on someone than to try to understand what they live with on a day to day basis. I've learned it is impossible to explain what life is truly like for me.

If I could afford to hire someone to come in and clean for me just one time, I would do so but I cannot. So the dust and floors will wait for a day when I can stand and balance on two feet I can no longer feel.

My friend called me this afternoon. She watched "Pay It Forward" for the first time. It impacted her life. I remember when the movie first hit the screen. It inspired people to make a difference in the lives of those around them and to pass it on. What happened? Why don't people do this anymore? Instead of wasting time passing judgement on someone's home, how they dress, what they do or don't do for a living, why not meet a need and pass it on? It would be a better world if more people did this. I wish more people cared.

I wish this world was filled with more compassion.