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Wednesday, November 12, 2014

UPDate on Medical Stuff

I saw my doctor yesterday. She determined that the Benlysta was making me sicker than not taking the medication at all. For two weeks out of four, I'm in bed sick and weak. The other two weeks are spent with the same lupus complications. She stopped it cold.

She said I was having a lupus flare and Fibromyalgia flare all in one. She also is concerned about my lungs and the right side of my heart. I have to see another pulmonologist and then have a right heart catheterization ( pulmonary artery catheterization ). It appears to her that lupus has damaged my lungs and heart.

http://www.thoracic.org/clinical/critical-care/patient-information/icu-devices-and-procedures/right-heart-catheterization.php



Will keep you updated when these events occur. I have always experienced strong side effects with every medication I've taken over the years. I usually rejoice when one medication is gone. But this time I lost one and added two - two more complications and a heart cath. At least it won't be unfamiliar territory. I've had one in the past (on the left side). Hoping they can take a look at the aneurysm while they are in there!

So the bills for Benlysta are coming in and now I'll have more medical bills to come. Is it worth it? Today I really don't know if it is.

All I can say is I'm taking one day at a time. Thank you, friends, for helping me and encouraging me. You'll never know how much this means!

Friday, November 7, 2014

Dreams and Nightmares

The colder it gets, the more I'm inside. Problem is the inside is colder than the outside! So I curl up in bed with an electric blanket. Rascal curls up with me. Poor dear is frozen, too. Just hope the blanket lasts another winter. 

I don't know if it is the weather, my lupus flares, or the approaching holidays, but I seem to be having dreams about my family members who have all passed on. Last night I spoke to my mother, my daddy (who was preparing his fishing poles for a fishing trip), and my brother who had been kidnapped and I couldn't find him. Please keep in mind these people have died. And then Kevin Spacey somehow appears at the end of the dreams "saving me" from their loss.

But at this time of year, Thanksgiving and Christmas, I miss them so much more. It weighs so heavily on my heart that I find myself heart sick. The heart sickness starts new flares. The circle never seems to end.

 Last Christmas was the worst I had experienced since I lost my family. I was alone. Completely alone. It was devastating. I just prayed and begged God to not let me suffer through another Christmas alone. As the holidays approach, I am alone again. 

So I "toughened up" and made the decision not to hope for anything this year. I'd been doing quite well until the dreams and nightmares started and I realized I didn't have any control over them. I wake up crying "help me!" and just plain soaked in tears. I have done away with naps (even though I am suppose to take them to prevent flares) and sleep less at night. 

At this point I wouldn't mind a good coma if it would last past January 1st. 

I have come to realize people don't care if I am alone or suffering. They are far too busy with their own lives. So I have to be thankful for the small things I can do for myself to keep going. 

No matter what people say about loss in your life, you never get over it. You merely learn to live with it as days pass. But at the holidays loss is magnified. Unless you have suffered through it, you won't understand. I believe that when a family member passes, they take a part of you with them. If that is the case, I'm only 1/4th  here. 

And if I'm only 1/4th here, why does it hurt 100%?

Sunday, November 2, 2014

A Rough Weekend!

It has been a rough weekend. When the cold rain and sleet set in on Friday, it hit my joints. I could not walk on my right leg. The knee joint was swollen twice its size. Snow set in early Saturday morning. Thankful I could drag myself to the window to see it fall. 

I love and hate winter all the same. LOVE snow! Love the cooler temps, but my body is in so much pain I can barely walk a few steps. My apartment is freezing cold and the cold affects lupus. Will I make it through another cold winter? As long as I'm bed bound, I'm okay. But walking through the apartment is so rough on my body. 

Can't believe Thanksgiving is in a few weeks. I hate this time of year. Reminds me of how alone I truly am in this world. Loss of my family is great. No one to share the holidays with - just me and the cats. I hear people complain because they aren't married - "I'm so alone." Quite frankly it makes me sick to my stomach because the very people who say this have parents and siblings. They are not alone. Alone is having no one. Unfortunately I know alone all too well.

I tried sleeping through Christmas last year, but the pain was still great in my heart. I wonder sometimes what I did to be left alone in the world. The only thing I can think of is I became chronically ill with a disease most people don't understand. It wasn't my choice. I did nothing to acquire this disease, but I have it all the same. Just wish people understood how alone I am.

If you are reading this page, please look around your neighborhood. You'll find someone who is alone in the world. Invite them to dinner for Thanksgiving and Christmas. Show you care. It will make a huge difference. Put yourself in their shoes and understand.

My wrist is so swollen today from the cold that I have to close this post.

Thursday, October 30, 2014

Lupus, Stress and Kevin Spacey

It has been one of those days - a terribly, horrible, no good very bad day! The stress of worrying where the $4,000.00 to repay a grant I received for Benlysta is keeping me awake at nights. Not to mention I'm still paying for the medication itself (the infusion). 

Side effects from this horrible medicine have been strong. This month I had a horrible headache the day after, joints swollen, pain intensified, and could not get out of bed for a week. Geesh!! If the medication doesn't kill me, the worry will! I haven't slept for two days.

Stress is very bad for lupus patients. It causes flares. Flares cause irreparable damage. Damage makes for a terrible life. No quality at all. 

And that's where I am right now. Stressing over the cost of everything. Knowing I can't pay it back alone. Knowing I have no one to turn to for help. 

My pantry is empty. My fridge is bare. The cats are getting low on food. And I'm ready to pull my hair out!

This has been a very difficult month. Now the holidays are approaching. Another stress added to my life. No family. Nowhere to go for the holidays. Magnified emptiness. 

I'm tired of being sick. I'm tired of being tired. And I'm tired of struggling. Stress is killing me. 
 
 One good thing happened this week. I received a card in the mail from Kevin Spacey. He was thanking me for kindness. I have no idea what he's talking about, but it made my day.

Wednesday, October 15, 2014

Word Of Warning

My apartment is old. The bathtub has horrible stains. I have tried for two and a half years to get those stains out. Yes I' e tried everything! 

Tonight I decided to try a product with Clorox. Burned my lungs and throat so badly. Almost called 911 when I passed out after a severe coughing fit. What stopped me? Cost!!

Fumes are still bad, but I finally opened the window.

If you have a chronic illness, do not use any thing with Clorox.

And no it did not clean the horrible stains. Just made me sick.


Saturday, October 4, 2014

Update

It has been a horrible week physically! Was so sick I could barely get out of bed. High fevers, swollen joints and legs, throwing up, etc. Side effects from Benlysta or the start of a new flare? Not sure. All I know is that it has been a horrible week. 

Haven't sent many updates lately because I'm using my Kindle to go online. Hard to type on a kindle. Will try to do better.

My next Benlysta IV is Friday, Oct. 17th. The foundation that has contributed part of the payments for treatment (since my insurance won't cover it) has informed us we must pay back 25% of the full cost. Fine time to learn of this! My GoFundMe.com account is dead in the water. I haven't met $1,000 let alone $13,000 to pay for the medication. 

Many prayers needed!!

Saturday, September 20, 2014

Death By Electronic

My laptop died. My printer died. They say it comes in threes. What is next?