Wednesday, January 16, 2019

Just a Request

My doctor came yesterday. Looks like the knuckles are still turning. The pain is bad. Very bad. The middle and finger next to pinky have the worse erosion of the bones in my fingers is rapid. Two are barely hanging on. When my vacuum cleaner died the other day, I spent two hours trying to open and close, reset into place and hoping it would start working again. No luck. May it rest in peace. But it inflamed my poor fingers. Now I can barely use them. Pain keeps me awake at night. With all of the pain therapy I get, sometimes you just can't make it subside. 

My birthday is Sunday. For the past few years I've maybe received one or two cards in the mail. Thank you internet! You've taken that joy away. SO this year I'd like some birthday cards. If you're interested:

Mary Calhoun
309 Bellevue Ave
Wilmore, KY 40390

Would be so grateful.

Next Monday is the rheumatology appointment and the last Thursday is Benlysta again and Glaucoma doctor. It has been an extremely expensive January. With trips to Lexington for doctor's and hospital visits gas alone has been $40. Not a good thing, but if I didn't have a friend to do it I wouldn't be able to get the necessary medicine and see the necessary specialists. 

Thank you all who encourage, keep me in prayer and help when you can. I can't thank you enough. You truly make a difference. 

Saturday, January 12, 2019

January Blues

The double weather whammy hit last night and today. Woke up to bitter cold weather and a couple of inches of snow. Later rain came in. Now I've is forming. As always the weather out me in bed with swollen joints, sore muscles, fever and an achy body. I've dropped everything I've picked up because the arthritis in my hands is screaming!  I could barely hold a toothbrush. The more years that pass with this horrible disease just gets worse.

My birthday is January 20th. I'll be 58. I wonder sometime where the years have gone. All I can hope is that somewhere through the years my life has meant something to someone. If I have made a difference in one life it was worth it.  I'm so thankful many have made a difference in mine.

My birthday has had a dark shadow over it for many years. My mother died two days before my 24th birthday and I spent that day in the funeral home.  Even though the pain has lessened over the years it still hurts. Along with those life markers comes the memory of my mother's birthday on January 25th. To me my birthday falls into the same boat as Christmas. Just another day to endure.

Someone asked me what I would like and after thought given said I'd like to not be weighed down with concern of having to find a way to pay for my heat, fill all of my medications, and buy food. I'd like to not have to choose between the three. 

This year I vowed to ask myself if I could do anything to change something I'd do it. If not I would accept it. Hard to do when you have to make so many choices and the choices are among food, medicine or heat. There's so many things I can't do to change it. So I do without.

I hear so many stories of people taking vacations, traveling, eating out at so many fun places. While I'm happy they can do these things, I cannot. I'm thankful for the time I could.

it is a dark and dreary day today and my spirits are low. Thank you for the help you have shared in finances and prayers. I can't begin to thank you for all of the love behind it. You make a difference in my life. Your kindness shows me my life still has meaning.

Friday, January 11, 2019

Just Don't Understand

It has been a rough two days. On Tuesday I saw the Retina doctor. He did some tests and said he didn't think it was plaquenil toxicity causing my rapid vision loss. Did suspect optic nerve damage. Tried to talk me into the test where they stretch a string across your eyes (the one I swore I'd never do again). Last time I did that test it cut my left eye and it was swollen shut for days. Explained that I would not be doing that test. Ever.

After talking again and again about not doing it, I asked what other tests could measure if it was the optic nerve. He said an MRI, but it would cost too much. Pretty sure my insurance company would approve it.  Explained that to him. 

Then he said part of the problem with optic nerve damage is due to lack of B-12 vitamin. We finally decided a blood test would be just fine.

When did the patient not be allowed to say no? That angered me more than anything. I've experienced tons of doctors, some of whom should never be doctors in the first place. Pretty sure I have a right to say no. And there are other ways to measure things besides torcher. 

Won't be going back to him. Now I see the glaucoma doctor as he will probably say he's not sure if the glaucoma is causing the loss. I'm tired. I'm tired of being ping ponged back and forth and hearing the same answer. Depending on what he says I'm done. No drops? I don't care anymore.  Enough is enough. I'll go back when they decide what it is.

How do you make someone understand how physically taxing it is on a person who is sick to get up, get dressed, go into a doctor's office, sit for long periods of time? It was a total of four hours once I left the house Tuesday. I was home by 6:30 pm. 
Has taken me two days just to regain a little strength. My left eye was swollen shut for two days  because of the bright lights and multiple drops they put in my eyes.  I had a headache for two days. 

I'm so thankful to have MD2U come to my home once a month along with Palative care. Has made a difference. Wish I could do all of it from home. Would be easier on my system.

Today my joints are swollen, I feel sick all over, and hurt tremendously. What doctors don't do to me the weather does. It went from 62 to 30 as the highs here in Wilmore. Big temperature swing always causes pain and flares. I'm in a flare.

I give people credit for not understanding because they cannot relate. Doctors are different.  Or so they should be. 

Please remember me in prayers. 

Monday, January 7, 2019

NEW YEAR SAME OLD STRUGGLE

A new year has begun and with it comes a ton of doctor and hospital appointments.  Had my first Benlysta infusion last Thursday and the medicine made me very sick. Have been in bed yet again since Thursday. Seems to be knocking me off my feet each four weeks. 

Tomorrow I have an appointment with a new Retinologist. They said they would be running tests again to see how far the Plaquenil damage has gone and if it is the cause of my  fast vision lost over the past year. If it is there is nothing they can do. 

Then I see the rheumatologist on the 21st. She doesn't do a thing, but she is the only one who can write a prescription for Benlysta. My pain management doctor comes to the house and gives me medication the rheumatologist once did. The MD2U doctor comes a few days before her to make sure I get a check up and have all of the other prescriptions.  I haven't had a good Rheumatologist since Dr. Pratt in Dothan. Foolish choice to move here and suffer with my health.

The last Thursday of the month  takes me back for another Benlysta infusion and Glaucoma doctor appointment. Depending on what the Retina doctor finds, I will see Glaucoma to check my eye pressure and either make plans to have laser surgery or accept the fact plaquenil has totally destroyed my vision.  IF you are taking Plaquenil, learn from my experience and get rid of it now. There are other medications that don't cause permanent eye damage. 

The good side of all of this is I'm getting out of the house. The bad side is it isn't for anything fun. I think the bad outweighs the good here.

With the new year comes increased costs of the medications I'm taking. Like so many I'll have to choose between filling a prescription, paying a heating bill or buying food. No one should have to make those choices. But you do what you have to do. 

Today I feel like a truck has hit me, backed up and hit me again.  My muscles are sore. Feels like I've been lifting weights. I ache all over. I'm having fevers one after another. My joints are swollen and I'm in pain from the crazy weather pattern. I enjoyed the Spring like day today, but it is about to rain once again and the temps take a nose dive. Feel as though I've been climbing a mountain and when I think I reached the top, I fall all the way back down. 

I'm so thankful for encouragement here, prayers and love you share. Without you I simply couldn't make it. 

It is a new year, but for some of us it is still the same struggle. Here's to taking one day at a time.

Saturday, December 29, 2018

Nose Dive Saturday

It has been warm in KY for the past couple of days. In the high 50's. A literal heat waive. Today it is 37. In a couple of days it will be 60 then back to the 30's. If anyone wants to know what I'm talking about in this roller coaster weather attacks hitting someone with systemic lupus, well, here's your answer. Barometric pressure beats up the body especially when someone has a disease like lupus. The up and down temps are just brutal. Couldn't sleep last night because of the pain setting in. So I'm a walking zombie today. Accomplished packing up an ebay sale and that was it. I feel like I've been beaten up inside and out. If the barometric pressure could leave bruises I'd be blue all over. 

Someone asked me a bunch of questions concerning my illness the other week. They asked why I wanted to go back home. I explained the health care here is awful. I haven't had a decent rheumatologist in seven years. My health has declined so much that I dread to see where it is going in the coming year. The only way I stand a chance health-wise is to go back to the care I had in Alabama. If not I'll just keep declining with lack of care. I'm not the least bit afraid of dying. My fear is living and suffering in the decline.

Someone else asked about my life with my mother. She simply didn't want me and spent my first 18 years reminding me that I was ugly, no one would want me and she wished I'd never been born. Of course it destroyed my self confidence. Of course when I look in the mirror I see what she saw. And it turns out her self fulfilling prophecy was true. I deal with all of this daily. When you've been scarred this badly it is hard to see the bright spot.

It amazes me lupus didn't show its ugly head while I was growing up with all of the physical and emotional abuse that went on. It finally did the year my brother was diagnosed with cancer. Two years later the disease started its path of destruction. Years of stress, illness and death of my family took its toll heavily. Now the rapid decline of my health is back to roller coaster pace. One more reason I want to go home: I want to see where I was raised, live there, get out of the miserable cold that continually beats me down, and be able to visit my family's graves. It is that simple. And it is that simple I can't afford to pay for a moving company, deposits for a new place to live, and transportation home. Unfortunately it truly is that simple. 

We can't predict what each day may hold. We can only hope.

Fever has started to rear its ugly head. Another flare is coming. Would appreciate prayers. 

Thursday, December 27, 2018

Post Christmas

A new year has begun and with it comes a ton of doctor and hospital appointments.  Had my first Benlysta infusion last Thursday and the medicine made me very sick. Have been in bed yet again since Thursday. Seems to be knocking me off my feet each four weeks. 

Tomorrow I have an appointment with a new Retinologist. They said they would be running tests again to see how far the Plaquenil damage has gone and if it is the cause of my  fast vision lost over the past year. If it is there is nothing they can do. 

Then I see the rheumatologist on the 21st. She doesn't do a thing, but she is the only one who can write a prescription for Benlysta. My pain management doctor comes to the house and gives me medication the rheumatologist once did. The MD2U doctor comes a few days before her to make sure I get a check up and have all of the other prescriptions.  I haven't had a good Rheumatologist since Dr. Pratt in Dothan. Foolish choice to move here and suffer with my health.

The last Thursday of the month  takes me back for another Benlysta infusion and Glaucoma doctor appointment. Depending on what the Retina doctor finds, I will see Glaucoma to check my eye pressure and either make plans to have laser surgery or accept the fact plaquenil has totally destroyed my vision.  IF you are taking Plaquenil, learn from my experience and get rid of it now. There are other medications that don't cause permanent eye damage. 

The good side of all of this is I'm getting out of the house. The bad side is it isn't for anything fun. I think the bad outweighs the good here.

With the new year comes increased costs of the medications I'm taking. Like so many I'll have to choose between filling a prescription, paying a heating bill or buying food. No one should have to make those choices. But you do what you have to do. 

Today I feel like a truck has hit me, backed up and hit me again.  My muscles are sore. Feels like I've been lifting weights. I ache all over. I'm having fevers one after another. My joints are swollen and I'm in pain from the crazy weather pattern. I enjoyed the Spring like day today, but it is about to rain once again and the temps take a nose dive. Feel as though I've been climbing a mountain and when I think I reached the top, I fall all the way back down. 

I'm so thankful for encouragement here, prayers and love you share. Without you I simply couldn't make it. 

It is a new year, but for some of us it is still the same struggle. Here's to taking one day at a time. My birthday is January 20th.  As a child my parents never acknowledged my birthday. No cakes, no presents, no happy birthday greeting or card. Just another day. I was told my birthday was too close to Christmas to ever expect a birthday present. My first birthday cake came when I was in college. Had my first birthday party there, too. 

You could say my birthday is nothing special. Add to the day  the forever brand of my mother dying two days before my birthday. I turned 24 in a Funeral home. It has worn a dark shroud ever since.  Her birthday was the 25th of January. I guess I wasn't quite the birthday present she wanted. (read the previous post).

It is for all these reasons I hate seeing my birthday come. Even though it marks another year in my life, birthdays just don't matter to me. I've had to learn to harden my heart where they are concerned. But if I had a birthday wish, one that would truly come true, it would be to go home. I know I'll go home one day whether it be by friend or  a casket. One day I'll go home. Just wish it would be while I was still alive. 

I'll be 58 this year. Two years from 60. And I'm tired. So very tired. Lord please shower a blessing or two on me this year so that I can endure it better. 

Saturday, December 22, 2018

Just Hibernating

So Christmas isn't my time of year. When you have no family and nowhere to go you tend to do things to help you cope. I've decided to hibernate as much as I can. The Benlysta is on its way out of my system and I'm just too tired to fight this darn depression anymore. All I want to do is sleep and that comes sporadically these days. Doesn't help I'm rock bottom on Vitamin D. 

Did some research and found some signs of vitamin d deficiency. If you're a big sun worshipper you shouldn't have this problem since most of vitamin D comes from the sun. If you have lupus and can't be exposed to sun you run the danger zone. One of the symptoms are low bone density. Mine are already one step from osteoporosis. Another article I read says low vitamin d can affect vision and cause loss.

Personally I'll be glad when Christmas and New Year's is over. Not for the normal stress, but for the stress you get from things you can do nothing about. This year my number one change will be asking myself "Can I do anything to change it?" If no, I have to let it go and the stress that comes with it. I can do nothing about isolation at Christmas. I have to let it go.

If you have family, please do whatever you can to let them know you care. I'd give anything to have that chance again. Please don't waste your chances. 

Thank you to everyone who has been so encouraging and helping along the way. It has truly made a difference in my life.