Wednesday, February 25, 2015

Another Test

Cardiologist wants a chemical stress test to determine vBulletin whether she needs to do a left  And right side heart cath. That one is March 10 th. If she does both, they go up through the groin. Oh joy! At least I have a break between doctors - a week! Still praying for something good to come around the corner.

She was surprised I have lived twenty years with lupus. No more surprised than I am. But with those years have come suffering, multiple doctors, multiple meds and struggling on my own. It  has been hard. One day at a time. 

Friday, February 20, 2015

Stupid Doctor Stupid Pharmacy!

I use a mail order pharmacy because it is too difficult for me to walk downtown every time I need to refill my medications. I've never had a problem like this one before.

So the battle of medication continues. I looked at the bottle again. She wrote the prescription for one month. The pharmacy set the prescription as a three month supply. I called them and pointed out they messed up. The problem was doctor never specified one The problem was doctor never specified one or three months on prescription so the pharmacy ASSUMED and put it at three months. I was getting one month of medication for three months. So I made sure they knew how badly they messed up and it took me finding the problem and not customer service (I went through three people). They are sending it out overnight their cost which means I won't get it until next week. Both messed up - doctor (surprise surprise) and pharmacy.

It would not have gone through all of this had it not been for the doctor's office calling me this morning insisting they did the prescription correctly according to the doctor. They insisted she could not request a three month supply. Turns out she was wrong because the pharmacy said this med is not regulated in KY. I was also told this medication does not have withdrawal symptoms (WRONG AGAIN!).

It could not have come at a worse time. Below zero temperatures, snow, upcoming rain, sleet and snow, etc. causes extreme pain in my body. Last night I slept for the first time in three days. With no medication to counteract the pain, I'm suffering. Doctor didn't even offer to call in a few meds just to get me through until the next refill.

I had to solve the problem by myself. If I hadn't discovered the problem, I would have suffered more. This is the problem of being sick. YOU have to make sure everything is covered. YOU have to go behind doctors, pharmacists, etc. just to make sure you are cared for. And the stress is unbearable at times. Stress, physical and emotional, causes lupus flares. Lupus flares cause damage that cannot be repaired.

I've had enough of stress so I try to avoid it (all kinds). When someone causes me undo stress, they literally are making me sick.

So today the doctor (who took an oath to do no harm) did harm. The pharmacy, who is suppose to make sure they get it right, did not get it right. Customer service people who are there to find the issue and fix the problem did not. I did.

I'm tired of bad things hitting me from all sides. Something good must be coming around the corner. I surely need it today!

Thursday, February 19, 2015


I've reached my limit! My pain medication bottle said to refill after Feb. 4. So I called in the refill and received a confirmation number that it went through. TWO WEEKS LATER,  I receive a letter stating they could not refill because it was too soon. Refill after 2/26. So that makes weeks I've gone without my medication.

I call them. First person put me on hold and left. Second did nothing but say, "It was too soon to refill." How do you make these idiots understand how dangerous it is to go without medication for weeks?! You can't! It isn't the first time something like this has happened with them. The last time I mailed in a prescription and got a letter stating "we can't tell if this is a real prescription." Are you kidding me???!!! No phone call. Nothing. So I had to call my doctor's office and tell them to call in the prescription. Two more weeks of waiting. The next prescription problem occurred when they called me after the "change over" date and said they could no longer refill my cholesterol medication, that I would have to select another. I've been on that medication for ten years. It works. So they decide not to allow me to get it anymore. It controls cholesterol due to lupus complications. I take it because of the aortic thoracic aneurysm.

If you need prescription insurance, do NOT use Cigna Healthspring. EVER. IMPOSSIBLE customer service.

So I called my doctor's office. Explained the situation and told them I think the doctor didn't do the prescription total correctly. I've been taking this medication for years at same refill amount. Two in the am and two in the pm. She called in three month's supply. Called in 180 pills. Should have been 360. Lucky for me, if you call it lucky, I didn't take four a day for awhile.

It was determined she messed up the prescription. I told them I haven't had the medication for two weeks. Call me crazy, but I know how dangerous it is to stop a medication suddenly. I've been sick for over a week and know it stems from this. This office has always been a "Laurel and Hardy" experience. I had to find funding/partial funding for the Benlysta on my own after they gave me the wrong form to send in. I have to make sure my appointments were entered in the computer or I'll show up with no appointment. They have taken me off one med and put me on the other and made me sicker from it. I've been living with systemic lupus for twenty years now. I know what works and what doesn't. I know there is no cure. I know how to take medications. I know what I should and should not do.

I need a doctor to monitor the disease, not make it worse. Until I moved to KY, I never had the problem of medication, appointments, etc. What is going on here?!

I told the office person I would have to go without the medication for more than another week and something needed to be done. I get, "I'll ask her and see what she says." That's it?! Call in a few meds to get me through for heaven's sake!

So now I have to call back tomorrow to make sure something was done.

All of this during the coldest time of the year. The pain is unbearable already and now I'm without medication for it. It is -15 degrees with wind chill.

Still having problems with my lungs. Solution? They want to do a heart cath. I don't understand why. I just want to give up! I am stressed beyond belief!!!

Sometimes I think I would be better off to stop the meds, stop the doctors and just let go.

And by the way, I couldn't scream to the top of my lungs if I wanted to. They hurt too much.

Tuesday, February 17, 2015

Cold Temps!

Temps are COLD today with fourteen inches on the ground in my back yard. Weather says we're going to hit below zero again temp wise and more snow tomorrow. I think we're getting a taste of Boston's weather.

With the cold comes the pain. Haven't slept much even though I've been wrapped up in blankets. Still have the wonderful "borrowed" heater (too much snow on the ground for her to come get it). My gas heat is working, but the cold block walls are retaining the cold once the heat turns off. Still feels like a freezer in here.

I'm so thankful to see the sunshine this morning. Hoping some of the snow will dissolve. It is a light fluffy snow so maybe some will melt away.

Even though there is so much to do inside, I'm really getting cabin fever quickly. Odd since I'd be inside anyway. I know it is a mental thing.

Still sick from infection. Can't seem to get rid of it. I'm certain the cold air I breathe doesn't help. I do understand what the pulmonologist meant when he said to avoid cold air due to my lung issues. It literally hurts to breathe.

WEDNESDAY UPDATE: Temps will be frigid. MORE snow - predicting three more inches. Yep, it is snowing again!


Monday, February 16, 2015

Cold Snowy Day

It is a cold snowy day in Wilmore. Expecting at least twelve inches. May be more. This is the kind of snow I remember during college days. Soft, powdery snow falling so heavily it looks as though the sky is breaking off into pieces of white. The news says this kind of snow hasn't happened in fifteen years. It is so beautiful.

I don't know why, but snowy weather doesn't hurt as much as rainy weather. Although the pain remains, it isn't as intense.

My landlord is suppose to pick up this wonderful heater today. I surely have enjoyed it. Has heated my entire apartment so well.

Rascal woke me up this morning by pushing on my nose. It was as if he were saying, "Get up! There's something wrong outside!! Make it stop!"

Once I made it into the living room, he went to the window meowing. I tried to explain to him I couldn't turn it off. Silly cat. It is just snow!


Friday, February 13, 2015

A Valentine's Day Post

I'm not a fan of Valentine's Day simply because I don't have anyone (including family) to share it with. But this afternoon my next door neighbor and her two small sons brought me flowers. Needless to say they made my day!

If you don't have anyone to share it with, do something nice for someone you know or don't know. You'd be surprised what a difference it makes.


One of those Days!!

Today I woke up with no heat! The system just wouldn't turn on. The house was more like a freezer than normal. I called my landlord and she brought over a wonderful heater and called the repair man. The heater is so wonderful that I wish I had one! But it costs over $300. The positive thing is it only runs for $1 a day and boy does it warm up this freezer! This is the first time I've been able to sit in my living room and not wear gloves! Amazing heater. I highly recommend it.

 The brand is EdenPURE. This is a listing for this item:

Early afternoon the repair man came. He said the (gas) furnace was in for quite a cleaning. It appeared to never have been cleaned before. The dust and gunk was preventing it from firing up and turning on. Nice man even did a carbon monoxide test on my place. He said having a detector is a must for anyone with gas heat. I'll have to add it to the list.

He also informed me with block walls it would always feel like a freezer in here when the heat turns off. Odd timing since my pulmonologist said I should avoid cold air as much as possible because of the damage lupus has done to my lungs. Great suggestion, just not possible since I live in a freezer during the winter.

I am so thankful for the "borrowed heater" and the repaired furnace. I can only keep the heater until Monday, but I now know there is a heater out there that actually warms this place. Just hate that it is out of my financial reach.


Tuesday, February 10, 2015

Doctor Day Thursday UPDATED

Doctor said I have to have a heart cath so that they can look at the right side of my heart. I see a cardiologist on Feb. 25th and set up a time then. Will have it done at the hospital and hope this is the end of these horrible tests!

I found myself thinking about NOT doing it. I feel like I'm on a roller coaster that just doesn't stop! I want it to stop and I want to get off! Doctor after doctor after doctor. Test after test after test. Medication after medication after medication. Is it worth it?


Thursday is doctor day. Pulmonary doc. Will get test results then.

Sunday, February 8, 2015

It Is Hard to Explain

It is hard to explain being chronically ill to someone who has not experienced it. Your entire life changes. You can no longer do things you once did. You decide between one activity instead of several because your stamina is gone. Resting does not restore your body's strength.

Society does not do well with those of us who are chronically ill. Even in places where people should be opening their arms and welcoming you in do you find them avoiding you because they are either afraid they might catch what you have or they have been judging and talking about you behind your back so much they are afraid they might let something slip. I've had experiences with both.

Many become instant doctors ready to say whether they believe you are sick or not. Sad they cannot see the suffering days. I seem to have more suffering days lately.

It is hard to explain to those who just don't get it, but it is worse to explain over and over again to those whom you've known for a long time. You'd think they would have listened and retained some of the knowledge and avoided you having to repeat the same thing over and over again.

Instead you are treated like someone who has the flu. They think once it runs its course, it is all over. How I wish this was the case!

Seldom do people understand no one wants to be sick with an illness or illnesses that rob them of life, of love and enjoyment.

It all comes down to this: people are more concerned with their own lives and just don't take time to "get it."

I find myself frustrated with those whom I have to repeat things to, angry at those who call me friend but never listen or seem to care, and broken hearted from those I come in contact with who just pretend I don't exist. It makes me wish I didn't.

Saturday is Valentine's Day. It is quite special to many who have those who love them. To people like myself, it is sad, empty, and just another day.

So the question remains for someone who is chronically ill, do we continue to dream and hope for the future or accept that this is the way life is?

Random acts of kindness don't have price tags. How I wish more people would share them. What a difference it would make.

Wednesday, February 4, 2015

New Year New Medical Costs!

It is a new year and with it comes more medical costs. My medications have increased dramatically. I have had one medication turned into two - take one away and replace with two. Twice the expense. 

Even though we have not had a lot of snow this winter, it has been terribly cold. My electric and heat costs have doubled. 

I refill my daily medication dispenser on Wednesdays. Today as I filled the dispenser, I found myself counting out the amount of meds I had left and cutting them in half. When it comes down to paying for your electric, heat, food, medications, you have to choose the ones most flexible. So food and medications get cut. 

Today I cut the cost by cutting the medications. 

I've been sick in bed for four days now. The cold weather has hurt me so much that I cannot sleep, can barely walk, and just can't function. 

Sometimes it is just too stressful to deal with diseases like systemic lupus (plus its "children"). When the stress comes in, the pain intensifies. 

The one thing my rheumatologist told me was to avoid stress at all costs. Unfortunately life doesn't work that way, especially when you are the only one you can depend on. 

Snow is suppose to come in tonight. Along with it comes another dip in temperatures. One extreme to another. It was 50 today and will be in the teens tonight. Extreme weather changes, barometric pressures, etc. cause a lot of physical pain. 

It has become so cold in this apartment that Rascal and Itty Bitty have moved in the bedroom with me. Rascal on one side of the bed and Bitty on the other. We're one big sandwich. All I can say is thank goodness for body heat!

I wonder if I'll be able to endure another winter in Wilmore. Never did I ever dream that the extremely cold weather would put me in bed for months, but it has. Truth is if I had the money, the means, and a place to move, I'd go back to Alabama. It has just been too harsh for me to live in KY. 

Still waiting to hear about my test results from last week. I see the doctor on February 12th. If his diagnosis is correct, another two medications will be added to my list and the cost of a medical procedure (heart cath) will be added to the already unmanageable totals. Stressed? YOU BET!