Monday, May 21, 2018

Painful Days

Saw my rheumatologist recently and pain  management and regular doctor come tomorrow. So tired of doctors. So tired of different opinions. So tired of MORE medicines added to the over inflated list already. Wreaks havoc on an extremely fixed income.

My hands have worsened over the past month with me dropping everything I pick up whether heavy or light. I've lost more dry cat food by dropping it on the floor this past month. Of course the cat loves it. She sits in the middle and eats her heart out.

Sorry I haven't kept this page up recently. Hurts to type now, or hold a pen, or hold anything. The erosive osteoarthritis is speeding along swiftly leaving permanent damage in its path. 

Had x-rays done of my lower left hip because the pain has become increasingly bad. I had a stress fracture in the exact spot many years back caused by prednisone use. X-rays didn't show stress fracture, but did show chronic osteoarthritis spreading down my spine and into both hips. Not much they can do about it.

In the mean time medicines keep adding to my list and I'm left deciding which ones to fill and which ones to leave until the next month. Frustrating, too, because the summer heat has hit us full force causing me to be house bound all of the time. My body can't take the heat anymore than it could take the cold.

The one good thing that has come into my life has been the Audio books for the blind. Since lupus has all but destroyed my left eye and doing constant damage to my right, I can't read books anymore. Had to adjust to listening to the audio books because they would cause me to fall asleep. Now I enjoy them immensely. Like listening to an old time radio show. The library sends out their own special cassettes with several books. I think the cat is starting to enjoy them as well.

People simply amaze me. I'm so thankful for the few who encourage and help me along the way. Makes a huge difference in my life. I'm constantly aggravated by those who seem to care and then disappear when they realize the illnesses I have are not like a cold. Not going away. I've always been teased by being quiet in a group of people (although I haven't been in a group for a long time). Thing is you learn so much about someone by what they say and do or don't do. It appears that this world doesn't value someone's word  or promise anymore.  I value someone's word, but when they offer to do something and then fade away with time, it is discouraging. I was always taught to stick by your word. If you can't, give the person an explanation. Makes no sense to offer help or support and then say things behind their backs. I've reached the point I don't know who to trust anymore because sticking to your word doesn't hold up in our society as it once did. I say all of this to encourage you to follow through if you want to make a difference in someone's life. If you offer to help, don't accuse them of using you (taken from someone else's experience). Life is stressful enough for all of us. Imagine what it is like for someone suffering physically.

Summer may not have officially started, but the heat has made its permanent appearance. Enjoy your activities. And please if you would add me to your prayers. Just a difficult time physically, emotionally and financially.

Sunday, April 29, 2018

Warm Thoughts

The first of May is only a few days away. It has been a cold April. Painfully swollen joints, fevers from lupus flares, more days confined to bed than up and moving around. But the seventies are warming the days here and the nights still hang in the thirties. A doctor told me I needed to move to warmer climate because the cold is doing far too much damage to My body.

If I bad the money I'd move back home to southeast Alabama and never complain about the sweltering heat again. Find myself longing to be home more and more as each day passes. At night my thoughts take me home and dreams come true. With belongings packed and kitties secure in carriers I see the road ahead leading home. Smells of azaleas, gardenias, Listeria mixing in a fragrant intoxication making me thankful to the one who is taking me home. How I wish it wasn't just a dream.

The past week here included an eye exam, home doctor visit and Benlysta infusion. Sad to say I hadn't seen another soul for ten days before. Eye exam revealed my left eye was worse, the retina thinning, increase in glaucoma drops to hopefully lower my eye pressure, and cracked clay dry eyes that I'll just have to live with. The pain is sometimes unbearable. Just thankful when I hope my eyes in the morning I can still see something.

My home doctor visit showed my hands are in terrible shape. The bones are dissolving in my fingers - erosive osteoarthritis. Still hoping methotrexate will slow it down.

Benlysta infusion was a long wait again. The pharmacy didn't have enough medicine and had to go to UK hospital to get more. Then the mixing and warming took awhile and the nurse had to,stick me twice to put in the IV. The medication knocked me for a loop. I've been exhausted ever since.

Even though life has been hard ( and extremely lonely) for awhile I still believe in miracles. I've learned to look for small ones every day. With the weather warming up I look forward to sitting on the porch and enjoying fresh air. Small moments in time. And I'll still hope one day someone will help me go home. Hopefully before my sight is gone.

Friday, April 13, 2018

April Thoughts

So we're in the roller coaster weather in KY. Last Saturday it snowed, rained in between, 80 degrees today and more rain Saturday and Sunday. Of course the snow returns on Monday because the temperatures will bottom out. I've spent January - March in bed because of lupus flares and other complications. Lupus patients are walking  barometers. It beats us up every time the weather and barometric pressure changes. Looks like we're going to jump straight to summer when the cold stops attacking.

Today lupus is attacking my joints and my right wrist is swollen and feels broken (no it isn't broken). Just hard to hold much of anything anymore. Thank you Erosive osteoarthritis!

Sorry to put this short, but I can barely type. Will update another day.

Monday, March 19, 2018

Act of Kindness

Yesterday someone knocked on my door. A man was standing there holding three cans of cat food.

"I thought your cat's might like these. I have dogs."

I thanked him kindly and he headed back down the street. It was a small act of kindness, but touched me deeply. Since I was quickly running out of food those three cans of Friskies fed my cats for two days.

 I don't experience random kindness much. We live in a world of self absorbed people. The ME society. Conversations filled with I and me are too plentiful, even in sermons. Calling a friend only to talk about yourself is just a selfish thing to do. And quite frankly I'm not interested in hearing about your trip out of town when I've been trapped inside for so long just hoping to get another chance to get away someday.

 Rarely do people look past their own family to see a need next door or down the street. When someone does, it makes all the difference in the world. That small act of kindness gave me a little hope. I'm grateful.


March has run away with me. I've lost track of time after being so sick for weeks. Realized Easter is only a couple of weeks away. Brought thoughts of childhood Easter baskets to mind. I remember having a basket until the age of eight. My daddy decided I was old enough to stop. Eight year olds don't understand when someone takes that joy away. I remember crying for a week. My classmates brought theirs to school for an Easter egg hunt, but I didn't have one to use. They laughed at me. That memory has stayed with me for many years. I hear of grown men and women receiving Easter baskets from their elderly parents still. Of course the contents have changed to adult things of chocolates, needs and trinkets.

I'm 57 now, but still think Easter baskets are a real treat  If I had a choice I'd fill mine with chocolates, jelly beans, soft teddy bear and gift cards to pay bills. Cash would fall on the list of needs, too. There's still an eight year old little girl just hoping for a basket this Easter.

Wednesday, March 14, 2018

Another Cold Day

Someone on line actually said I was used to this horrible cold. No. I'm flattened out by it. Bedridden because I can barely move. I he pain is horrible. Here the weather is a roller coaster. Bitter cold one minute and rainy, warm the next. Beats me up. This week has been below twenties, nine inches of snow, melting, then snow again. I JUST can't stand it some days.

It dawned on me Benlysta was working. My  Last iv treatment was January. Made me terribly sick so I stopped. My condition has worsened. Back to Benlysta next Thursday.

The last time I saw anyone was last Monday when I went to that horrible appointment. Nine days alone. It seems as though the sicker I get the more people disappear from my life. Being kind doesn't cost a dime. Problem is we all need someone to care. I never knew how precious that was until I have had to spend so much of life alone. Out of sight out of mind. Words mean nothing. Actions do. What has happened to this world? The coldness from people sometimes overwhelms the temperature. Want to be invisible? Walk with a walker or sit in a motorized chair.

Laugh if you will but those sweet little cats have been an answer to my life. They give me a reason to get up, a place to pour my love, and companions without drama, judgment, and rudeness. I love them dearly. Thank God He created them.

Please pray for me. I now have 21 prescriptions and five over the counter meds I have to take. The cost is overwhelming me. Sometimes I wonder if all of this is worth it.

Tuesday, March 6, 2018

Comes With the Territory

With systemic lupus comes sun exposure reaction. Rashes and sores are plentiful.

Here's a photo of one of my rashes.


All I can say is if you have a doctor you trust, don't ever leave him or her. Yesterday I went through pure hell on earth with the rheumatologist I saw for test results. Arrogant, obnoxious, full of himself and rudest person I ever had to deal with. I had hopes with him because it was a UK clinic and the doctors are also teachers in the field. He treated me like I was dumb as a stump and had no intelligence. Truth is I've been dealing with lupus and its damage for so much longer than he's been in practice. 

When the nurse checked me in, she said he was next door and I would be in my exam room next. Two hours later, he walked in. I said I thought I was forgotten. He said, "No, I was teaching a clinic." I heard him moving from room to room before those long hours passed. He saw every other patient but me.

TWO HOURS. If he had a class scheduled he shouldn't have scheduled an appointment. 

He is also a believer that if it doesn't show up in test results, he's not interested. Period. If you check on how you should diagnose lupus, you know there is no one sure fire test to determine it. Doctors go by test results (which spike when lupus is flaring) and symptom check sheet. If you have a certain number of symptoms you have the joy of living with this monster. He is also a firm believer in Fibromyalgia, which I also have. He said it was beating up my body. Tell me something I didn't know. He said there could be autoimmune disorders present and he could be wrong, but he would mark me down the hall to his friend who would confirm it. WHY would I ever listen to someone who thinks like him? Funny thing is lupus, fibromyalgia, osteoarthritis, and rheumatoid arthritis are autoimmune disorders. Just kept contradicting himself. 

After he was done, he told me he and his family were moving to Chicago. I almost jumped up and down shouting hooray! Trouble is I can't jump up and down anymore. 

The xrays of my hands showed degenerative osteoarthritis and rheumatoid arthritis. My knuckle bones are decaying so badly. One shows a huge gap from the finger where it is just destroyed. It is erosive. Something else referring to seagull arthritis which shows a pattern of a seagull at the knuckle. The rheumatoid seems to be around the thumb area. More info is here:

So now I'm on methotrexate and folic acid that needs to be taken with it. The side effect list on methotrexate is pages long. 

When I arrived home yesterday I just sat and cried. Cried because of the horrific way I was treated. Cried because I have yet another medication to pay for (adding on to make 21 medications now), cried because all I wanted to do was go home and resume care with the only doctor whom I trust, who did so much to help me. I'm not going back to another rheumatologist. If my MD cannot provide the medications I need, I'll go without. NO one, and I mean no one, deserves to be treated so badly as I was. 

When the nurse came in with another appointment, I took it, but also said I hoped this next doctor was more compassionate and kind. I explained to her how rude and awful he was to me. She said it wasn't the first time she heard this. But after looking up the next doctor's feedback from medical sites online, one in particular shouted run. "Arrogant and dismissive attitude. Behaves like he hates his job. I'm a health care worker and come in contact with a lot of physicians. This is one I will not return to and I will not recommend to anyone else"  Coming from a health care worker, that says it all to me.

Since I've been in KY, I have gone through three rheumatologists. First didn't care and moved soon thereafter, one that did as little as possible and every medical note was a copy of the previous one. Cut, copy and paste. This last one was the worst doctor I have ever experienced. There are simply some people who have no business being a caregiver in the medical field because they simply don't care. I'm done with rheumatologists.

So joy of joys my emotional upset has set off a flare. Fevers raging, breaking and starting over, My joints are swollen like crazy and I'm in extreme pain once again. The person who was suppose to be helping me destroyed just another part. 

IF you are suffering from a chronic illness, stay with the good doctor. Don't waste more time with those who don't care. I've learned over 23 years it is getting easier to spot the bad ones. And to doctors, if you intend to stay in the medical profession, at least pretend you care.