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Saturday, May 23, 2015

Still Sick!

I'm still sick! High blood pressure incident caused a lupus flare (which is typical of any kind of physical or emotional stress). My joints have been so swollen. I've run fever. Have a vasculitis outbreak. The bumps are so itchy and look horrible.

So tired of suffering from this horrible disease. Now with the heat setting in for summer, I will be once again housebound. 

Looks like I'll be anchored here for another summer. It costs a great deal of money to move and I barely have $150. I long to go home. I can't physically bear another winter in KY. It just physically hurts too much. And doing this alone is horrible. 

I need to be close to medical care. Need to be within a few minutes of an ambulance, ER, doctor. I'm not here. My experience with doctors here has been interesting to say the least. I feel as though I've received just that - minimal care. I can't breathe well. I can't function enough to go to the grocery store. I can't take care of day to day things anymore. 

I not only want to go back home, I NEED to go. It will take a miracle to get me there. A UHAUL is not an option this time around because there is no one to drive it. I'll have to get a mover. 

Every day I pray for a miracle. A breakthrough. I still believe in God's miracles and His power far exceeds my ability. I'm in His hands and wait.  

Saturday, May 16, 2015

Crazy Week

Had a doctor's appointment this week. My blood pressure was so high, they wouldn't let me go home for awhile. Odd occurrence for me. It is usually 120/80 - the one thing that works! At the appointment, it was 190 over something. I knew I felt bad that day, drained, dizzy, etc., but just got up and pushed myself on. I had three choices: stay at the office, go to the hospital or go home and crawl into bed. I chose home to bed.

Suffering from Systemic lupus does not mean I will die from it. Death comes from heart attacks, strokes, kidney failure. One thing my former rheumatologist told me was to keep my stress level low and watch my blood pressure. Having an aortic thoracic aneurysm sitting next to my heart is another reason to keep it low. Sometimes stress happens. Sometimes blood pressure just soars.

Add to the stress when someone on facebook stole my page or copied it and started one under my name. I was bombarded with emails and posts telling me to change my password. I did and also turned in the fake person. The page disappeared, but not until damage was done to my friend's list. My blood pressure was soaring.

One good thing came out of that experience. An old friend from high school called me later that night. I hadn't talked to him in many years. He was concerned about what happened on facebook and wanted to let me know in case someone else had not. We talked for awhile and I was thankful he had my back. We talked about many things including my illness. When he said he was sorry, I merely told him doctors said I would live ten years and it has been twenty. He said, "That's not much to celebrate when you're suffering." He had a point. My daddy always said "better than the alternative." Sometimes I wonder.

I'm still feeling stressed. Still dizzy and drained. Like I've said many times before, just take it one day at a time.

Tuesday, May 5, 2015

Back To Pain and Suffering

If you've ever had a toothache, you know how bad it feels. Magnify it 100 times and you will know how bad mine feels right now! The infection has returned and moved into the upper jaw and back into my right ear. Unlike many people, I don't have insurance coverage to see a dentist. So I suffer. I bathe my mouth in Anbesol and suck on ice (both of which numbs the pain for awhile). But the infection remains.

I've been obsessive with caring for my teeth, but lupus also damages the mouth as well as other areas of the body. It along with the medications involved in treating the disease also dry out and decay the teeth causing more dental issues and diseases.

I'm suffering. I'm so tired of suffering. I can barely walk across the floor, sit on the shower chair to take a bath, do simple things anymore. I found out getting assistance for someone coming in to help is out of the question unless I pay $157 a month for it. Of course that is out of the question when it takes every penny just to get through the month. I explained to the lady on the other end of the phone I had this service in Alabama when my health plummeted as badly as it has now and never had to pay for it. She said it was just a difference in the two states.

I was a fool to move to KY. I would give anything to go back home where I could be cared for again without a huge weight of stress bearing down on my body and mind 24/7. Live and learn.

I've always been a top notch student of the school of hard knocks. I've learned the hard way. Problem is learning now does me no good without a solution.

So my heart, mind and soul turns to God in prayer for He has always cared for me when people have not. Please, Lord, open doors.

Thursday, April 30, 2015

While The Weather is Warm

I'd like to move back home to AL, but don't have the funds to do so. It is extremely important for me to be able to get to the necessary doctors and hospital due to the multiple health concerns I have. I can't do that in Wilmore. A thing as simple as going to the grocery store has become difficult.

If you can help, please use the paypal link on this page. Your gift would make a huge difference.

Sunday, April 26, 2015

Rainy Weekend

It has been a crazy rainy weekend here in Wilmore. At least Saturday was. But it was nothing like my former town, Dothan, AL. Tornadoes, storm damage, high winds, tons of rain. Someone caught a great video: 

http://www.dothanfirst.com/story/d/story/must-see-video-of-severe-weather-moving-through-do/36141/BEv2Dp1xOEmDn6hCrSLQBA

I love to listen to the rain. But over the years the pain is so hard to deal when the weather changes. Rain and cold together are unbearable. Watching the video of rain is the closest thing I come to enjoying it now.

We're still in the 60's here and 30's/40's at night. Hard to believe it is the end of April. I think the temperatures kept my tulips from coming up this year. I sure did miss them.

Weather is suppose to warm up by the end of the week -  into 70's. I haven't been physically able to clean my place for months and it needs it so desperately. This weather has been so rough on me and if I had the money today, I'd move back to AL tomorrow. I just can't physically handle it anymore. It hurts too much. How I pray for a miracle!

Poor Rascal! Wants some Temptations Mixups Surfer's Delights treats so badly. But I won't be able to buy anything until May 3rd. It hurts not to be able to give him what he wants. With groceries so low in my fridge and pantry, no money in the bank because medications were so expensive this month, and even if I did have money, I can't walk to the store to buy them. I've been terribly sick for three weeks and haven't been past the driveway (and then only to take out the trash). All the kitties' tastes have changed. Now they want Friskies Seafood Sensations in the blue bag. I can do without for myself, but I hate to make my furry friends do without, too. It has just been a long month. How do you explain to someone having to make a choice between food or medication if they have never been in this situation?

Here's hoping this week holds open doors, surprise miracles, and needs being met.

 

Friday, April 24, 2015

Medical Associates will MAKE You Sick!

Being chronically sick is bad - sometimes you just don't have a quality of life. You struggle day to day to maintain what you can and accept what you can't. 

The worst part for me is dealing with the individuals who have sworn to do no harm - the medical community. My rheumatologist's office contacted me by letter to let me know she would not be in the office. I had to call and reschedule my appointment. When I did, I found out they had made appointments on two different days. I guess that makes up for the many times they wrote the date on a card, handed it to me and failed to put it in the computer. Wouldn't it be easier to call the patient and reschedule the appointment over the phone instead of wasting paper and postage? 

Since I've been going there it has been a "Laurel and Hardy" experience. Medication refills not called in, refills sent in dosages for one month and filled for three (Not enough medication to get me through three months), wrong dates given, having to explain to the doctor where she wrote the prescription wrong and it takes twenty minutes to sink in. I'm more stressed out when I leave than when I walked in the door. 

Today it was billing from St. Joseph Hospital. They bill my part A insurance and then send me the remaining part of the bill. I have to call them and tell them to submit it through my part B insurance to get the rest covered. Happens every time. Calling them is an experience. You get one person who doesn't have a clue, one who is so rude that they try to make you feel as though it is your fault, and this causes you to have to be tough on the other end. Today I had to inform the man it wasn't my fault the business office can't seem to cover both ends before wasting paper and postage and stressing me out. So I keep a stack of papers from them, all bills sent after part A insurance. This time the bills, came within a week of each other. No time to run it through part B. Just makes me never to want to walk into another hospital again let alone have tests run. 

My mind tries to remind me I'm covered on these bills, insurance will pay. But I immediately go to "I have $15 in the bank. You can't get blood from a turnip!"

Yesterday it was my MD's office. I had filled out a form for a special kind of coverage, sent it to his office with a SASE enclosed for him to return it. I get a call from his nurse. 

"You know this form states if services are not available, placement in a nursing facility or immediate care facility for the intellectually/developmentally disabled shall be appropriate for this member. The doctor wants you to know what the fine print says before he signs it."

"I know. I also know this is for five different areas and I chose one. I don't fall into those categories and the service I chose doesn't either."

"Okay. He just wants you to know." 

While I appreciate him covering this base for me, if he had read the form he would have seen there are other areas covered including adults and children with brain injuries, long term services for those with brain injuries, long term services for intellectual and developmental disabilities. That is what the above statement covers. 

I don't fall into those categories at least not yet, but with the stress medical staff puts on patients it may not be long. 

All he had to do was read. Doctors tend to scan. It is simple common sense. 

Add a third stresser to the list. This isn't medical related, but it was stressful enough. Wednesday I received an automated phone call from a financial institution I did not recognize. They said my debit card had been stolen. I hung up and called my local bank. The person said she had never heard of the company, checked my account and said nothing was wrong. So I stocked it up to scammers.

Wednesday I receive a call from my local bank.

"We have noticed some odd charges on your account. Did you make a payment for ....."

"NO!!" 

Since the amounts were over $200 they did not go through because of the minuscule amount there. I asked her about the call I received the day before and she said it was the bank's automated warning system. Ok. The day before the woman had no clue. 

They cancelled my debit card and now I have to wait two weeks to get another one. The first person stated she would cancel it and request another. Knowing how things never get done, I called my bank again to make sure it was taken care of. Card was cancelled but other card not ordered. So I ordered it again. It pays to follow up again. 

I will never understand why people think they have a right to take/steal things from others. If someone was in need, I would give them what I had. But don't steal from me. Odd thing is I haven't been out of the house for three weeks. Haven't use my card in that amount of time. Yet it was stolen. This world is unbelievable!

I've experienced the other side of kindness most of my life. What I mean is I've experienced people who steal, lie, take advantage of you, treat you badly. If you put kindness and nastiness on a scale, the second would win out. It has beaten me down over the years. Sometimes I wonder if I will ever be able to pull myself up again. 

I'm stressed, frustrated and tired of being bullied as an adult. Childhood and teenage years were bad enough. Life is hard enough without having someone make it harder. 

With stress comes lupus flares. People can literally make me sick and have done so. What is truly sad is when the medical field makes you even sicker. 


Monday, April 20, 2015

If You Have A Hard Time Sleeping At Night from Pain

Read this story. It is worth it.

I have suffered for months with the inability of sleeping at night more than a couple of hours at a time. It has taken its toll on my mind, body and soul. Sometimes I wish I could wear a sign saying "Leave me alone! I'm in pain!"

When you have a chronic illness with chronic pain, you get a lot of free advice you never asked for in the first place. It gets old quickly. However, you run across some pieces that actually help. This is one. Hope it helps someone who is suffering and someone who loves to evaluate people who are suffering.

http://www.lupus.org/magazine/entry/sleep-tight