Friday, November 28, 2014

UPDate

Just wanted to say how thankful I am to have friends who support me. Benlysta has been a rough medication to tolerate. It will take awhile to get it out of my system. I, too, wish it had worked.
Wouldn't it be wonderful if medications were money back guarantee?! Maybe they should include that in the health care system! Unfortunately, they are not so I will be paying back approximately $2,000.00.

There is always a reason for everything in our lives. Through this experience I have been reminded how kind and loving people can be. Thank you.

My next "adventure" will start in January when I see a pulmonologist. I haven't been breathing well over the past couple of years and signs are showing up that concern my rheumatologist. She's looking for pulmonary hypertension - Increased pressures within the blood vessels in the lungs that can lead to difficulty breathing and right-sided heart failure. Seems to also be a symptom of lupus damage.

After that I will have a heart cath of the right side of my heart. Date not set yet.

Thank you all again for the love and support you have given to me. Christmas season has started so enjoy your time with family!

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.