Tuesday, October 26, 2010

Pain Pain Pain

Today's temp broke records compared to the mid '80's. Was 89 degrees with high humidity. With rain going in and out, my pain is extreme. Weather is beating me up. Feels like I've been hit by a Mac truck today. We need rain so badly and I would welcome it, but it is as if the clouds just spit our direction merely to make us miserable.

Wednesday is colonoscopy prep day for me. No food tomorrow, just the liquid gook they give you to drink. I have to be at outpatient surgery at 7:00 a.m. Thursday morning. My last test showed precancerous polyps. That was almost a year and a half ago. Could not do a follow up until insurance paid for it. Who knows what they will find this time. I don't really care anymore. I just want to get it overwith.

Still not sleeping. My sinuses are infected and can't wear the cpap hose to breathe. Keep waking up sneezing. So tired...so very tired.

It is hard to explain to anyone who does not understand how it feels to be alone, totally alone. There is no comfort when you're sad, no encouragement when you need it, no "wow, you're really talented" to keep you going. Just silence. No love. No anything. Pain only scratches the surface of how hard it has been. I can only pray God will drop the walls of isolation and give me a small amount of freedom to breathe. I miss being able to sit on a porch and feel the breeze blow through my hair. I miss fresh air. I miss feeling safe. If I could explain where I am right now in my life I'd say I was in the farthest dark corner I've ever been just hoping and praying God would send a hand of compassion to me.

And if only there was a zipper installed on our bodies...it would surely help to step outside of this horrible pain.

Saturday, October 23, 2010

A Dream

I didn't sleep much AGAIN. All I can think is "YOU have to get this under control or you'll have a stroke or heart attack." Didn't help that my rheumatology appointment was just a repeat of the pulminary doctor's appointment the week before. He just read the report and repeated the same thing. Never mind the extreme pain running through my body. Never mind the fever of 102 I walked in with that afternoon. Never mind the chest pain I've had for a week now. That was the one doctor's appointment I knew I could count on, the one doctor who listened and cared. I'm growing more afraid he's getting jaded as each year passes. Now with medicare changing, I'm afraid I'll fall down the rabbit hole. No doctors want to deal with it. Neither do they want to deal with the new health care of Obama. I'm still in extreme pain. I'm still having chest pains. I still can't sleep. What was accomplished? Nothing.

I woke up after a couple of hours of sleep and made a list of things that needed to be done today. There were six items. I did one. I'm wiped out. Not fair. It isn't fair!! I'll wait and ask Sandy to help me with the second one on Sunday as it is a heavy one. Move the desk.

I dreamed last night that Christmas came. God sent me an angel who handed me a box. Inside the box was a key and directions to follow. My best friend and I got into her car and followed the directions to a beautiful beach house, put the key in the door and opened it. Inside the door hung a sign that read, "Welcome Home." God had sent an angel to give me a house, no a home of my own. He put that home by the ocean so that He would sooth and heal my soul and body from those who have bullied me, beaten my life down, ignored my cries. And the gift was free. I woke up with the lightest heart and the most peace I'd found in a long time. If and when God sends an angel with a box, key and directions inside, I will gratefully accept His wonderful healing gift no matter where that gift may be.


I don't get out much anymore. Head to the grocery store and the doctors/hospital. On rare occasions I do something different. Unless it is free, I rarely go. Seems the government has decided the senior adults and the sick and disabled will not have a cost of living in their benefits yet again this year. Food, medicines, electricity, etc. keeps going up, but our pockets stay the same. I think the one who makes this decision needs to live with this income for one year. Maybe they believe in "the strongest survive" theory. My strength is waining.

Doctors added a CPAP machine to my growing health arsenal a month ago. Has been hard getting use to sleeping with this thing. I saw the Pulmonary doctor yesterday. He told me my sleep test results as follows, "You tested critical. You are teetering on the edge of having a stroke or heart attack because of the many times you stopped breathing during your test. If we don't get this under control soon, you will have a stroke or heart attack." The addition of the aneurysm, thyroid, systemic lupus of 16 years, plus many other things have pushed me to this point. The fact I'm still not sleeping with the machine has made it worse. Lupus also causes strokes and heart attacks. I have also had a TIA in the past few years.

He put the fear of God in me, gave me another sleep medicine to try since nothing else is working and made another appointment to see me. Normally he doesn't do this with patients, just leaves it up to them to call if they have problems.

Next week is my Rheumatologist appointment. He treats my lupus. Always a surprise when I see him. Depends on the area of damage or flair. This time around may hit central nervous system. It is so difficult to have a conversation and not find words. Feels like someone is wiping away my vocabulary from a chalkboard. Lovely lupus damage.

Last Thursday of the month is a follow up colonoscopy. I say follow up because the last one showed pre-cancerous polyps. Since my insurance wouldn't pay for a year, I've had to wait to have another.

It has been a hard summer of lupus flares. They still haven't stopped. This time the pain has been difficult. People look at you and think you look great. They can't see the damage on the inside. Stress has caused 99% of the flares and damage. My doctor says environment is everything when you're sick. I've lived in an environment that has caused my health to take a nose dive this past year. Just praying for an open door to a safer place to live. It has been a horrible year.

On the edge of holidays. Soon everyone will be so busy with families. Please remember those around you who have no one. I'm sure there is someone living near you. Please take time to stop by and say hi, share a hug and remember them. It doesn't cost a thing to share time.

Asking for your prayers and sending up some for you!!

Sunday, October 10, 2010

Just Rambling Thoughts

It is October. Fall air came and went just as quickly. We're suppose to hit 90's again today. I'm thankful the 100's are gone, but the heat still makes me so sick. For some reason I don't tolerate heat well. I can handle the cold better. Most lupus patients can't tolerate cold weather. Bring on the cold!! I'm ready and waiting.

This week starts the month of Doctor visits. Wednesday is the Pulminologist. New doctor for me. Okay now that makes five doctors now. Can't keep up with them all. Pulminologist, Rheumatologist, internal medicine, thoracic surgeon, gastro doctor. The following Wednesday is my rheumatologist and the last Thursday of the month is my follow up colonoscopy. Since insurance wouldn't pay for the follow up immediately (which it should have done because of results), I had to wait a year and a half to do the follow up. You'd think finding precancerous polyps would qualify for a faster follow up.

Sometimes I wonder if it is worth it at all. Twenty meds, five doctors, Systemic Lupus plus Aortic thoracic aneurysm (just below the heart - 4.7 cm), mononeuritis multiplex (permanent nerve damage in both feet and left leg), Insomnia due to lupus, Depression, arthritis in spine, degenerative disk, congenital spinal stenosis, Hypothyroid, Fibromyalgia, Osteoporosis, Osteoarthritis, TMJ, Chronic Irritable bowel syndrome, Sleep Apnea. I'm tired of being sick and tired. Mostly, I'm tired of struggling alone. I'm so tired of crying in pain at night and there's no one to help me when I need something. I'm tired of not having the strength to accomplish anything in the day because I'm so drained I cannot function more than two hours at a time.

I'm tired. I'm tired. Maybe it is time I just stopped. All of it.

I want to be able to go outside and walk again. Sit in a bookstore and read or just get outside and watch people go by. I can't do that where I live right now. It is unsafe. I only go outside now when Sandy and I go to the store or the hospital/doctors. I feel so trapped. Imprisoned in a world no one would want to live in. Afraid.

I am praying for a miracle, one that will provide a way for me to move out of this place into a safer one in January. Whether here or farther away, I have to get out of this situation. I can't bear it anymore. My doctor once said environment plays a key role in the progression of my illness. This has been the longest year of my life. I've grown weaker and sicker. My soul has lost its will to thrive.

This is also the anniversary of my brother's death. He died October 27, 1994 from Cancer. He loved Halloween so much and I can't help but love it, too, because of him. He always made it the best memory of my childhood.

I miss him so much.