Saturday, June 18, 2011

Straight to the heart

Today my blog comes to you from my hospital bed. I have been very sick and that is why I did not post yesterday, I am still not feeling well, however, the blog must go on!

I was working at K-Mart, I was there a little over a year when this scary thing happened. I was sitting on the floor in front of my couch while Noel, my daughter, put french braids in my hair. I was trying to put my makeup on at the same time, I had to be at work soon.

I started to get a pain in the right side of my jaw, soon after I got a head ache, then my head felt funny. I tried to get up but couldn't, the room was starting to spin. So my oldest boy fixed me something to eat thinking that maybe it was because I hadn't eaten had brought on these symptoms. I took a few bites and felt like I was going to lose it.

I stood up and went to sit on the love seat just a foot away and laid down. I though to myself  "you can't do this, you have to get to work" so I mustered up my strength and stood up. My kids told me I went down and hit my head on one of the tables. I don't remember this, I just remember my son trying to get me back up on the couch.

911 was called and the EMT's came out to get me. I had slurred speech, high blood pressure, and couldn't remember much. I was put in the ambulance and they started and IV, gave me a baby aspirin and we were off to the hospital. as soon as I got there the took blood, EKG, gave me a nitro tablet (these give you a headache like you have never felt before) and medication for the headache.

My blood pressure was now 169/137 and the Doctor believed that I had a heart attack as well as a mini stroke. All I knew is that I was scared and wanted to go home cause I didn't want to hear what they were saying, being only 36 and having a stroke and a heart attack? Too much!!! Needed less to say I went through a battery of tests, yet they found nothing. The one E.R. doc still believes I had a heart attack, but it was not noted in my chart.

When I followed up my my specialist and told her everything that had happened and she explained that people with Lupus are prone to have Pericarditis, this is when the sack around your heart become inflamed and causes chest pain, it can be mistaken for a heart attack.

Here is a little more about Pericarditis found on www.lupus.org:


Heart disease is a major complication of lupus and is now a leading cause of death among people with lupus. Blood tests, chest X-rays, an electrocardiogram (EKG), or an echo cardiogram may be used to find out if you have a heart condition caused by lupus.

The most common way that lupus affects the heart is through inflammation of the pericardium, the sac that surrounds your heart. The symptoms of pericarditis that you may experience are sharp pain in your chest and, occasionally, shortness of breath. Pericar-ditis usually does not damage your heart’s ability to function because it does not directly involve the heart tissue. However, inflammation that is chronic (long-lasting) can scar the heart tissue, which can interfere with the heart’s ability to pump blood.

Thank you for taking the time to read today's blog. I want to draw your attention to a new item. I have placed the address of the two Hospitals that I receive my care from. If you would like you can make a donation to the cost of my Hospital bills. I have filed for temporary disability but it has not come through and I am not receiving a paycheck. The children and my family would be most grateful for anything you could give and if you can't give, please keep us in your prayers. Thank you for your support and God bless you all,
Dori

Wednesday, June 15, 2011

How it all begain Part two

Ok, not doing too well today, but the Blog must go on......

I went to see this specialist in the town about 50 miles from where I live, I really like this Doctor by the way, but that doesn't mean I don't get frustrated with her. On my first visit, she spent over an hour with me. She explained a little bit about Lupus and how it affects each person differently. I took all the information she gave me, that I could retain, in stride and thought that doesn't sound to bad. Ha, ha, that is ignorance for ya!

She began the exam, pressing on points of my body that made me wince and in some spots, cry out in pain. She looked very concerned, NOT A GOOD SIGN, and said "you not only have Lupus, and R.A., but you also have strong signs of Fibromyalgia." My Mom had Fibro and I was not happy with the diagnosis at all. (Little did I know then, it would be the least of my affliction).

So with this, I racked up a large bill, had two prescriptions to fill, labs to get drawn, an x-ray, and a follow up appointment in 3 months. One of the prescriptions was for steroids and the other was for treatment of Malaria. I thought "what the hell?" This medication was one of the more frequent drugs used to treat Lupus, seeing that it suppressed the immune system, I found out by doing research.

About two weeks later, I had gained over 30 pounds and was sick again. I could not get in to see my specialist and proceeded to see my regular doc. I walked into the room, face and appendages so swollen I could hardly move and the doc looked at me and said "what can I do for you today?" (I thought, are you blind????) I was so frustrated with her and her treatment of me, I fired her shortly thereafter. This was not a "take two aspirins and call me in the morning" thing. I hurt....I couldn't work, function as a mom, wife, or as a person. I wanted help and I figured if I was paying for it, I should have gotten some and not just a note stating I needed to be excused from work, was she going to excuse me from life too? I was red hot, if you couldn't tell.

As the weeks went on and the hurting subsided, I dug in for information on Lupus, sometimes I wish I hadn't, oh my what a list of what it can do to your body! I found out that there are three kinds of Lupus. I have Systemic Lupus (sle) but there is one that you can get from taking medications and another that infants get.

So, I opened the list of "information on SLE" geeeeez! There was pages and pages of information, I stopped there for fear of the truth. Yes, I am a chicken, I didn't really want to know all this stuff at first, it was scary enough as it was to know my body basically was waring against itself. This was a mistake on my part for sure.

Stay tuned for tomorrows blog...... Lupus, gave me a scare that went straight to my heart.

Tuesday, June 14, 2011

How it all begain Part one

Hello,

My name is Dori, I was born in California, had a somewhat normal childhood and am now living in Montana. I am 41, have four children and two grandchildren. I was sick often as a child and young adult, I also suffered two miscarriages. These were all things that I was told "just happen" to some people. Well little did I or the Doctors know that there was a little bug in my DNA strand called Lupus that was affecting my health.

I think it would go dormant and then go active and just wreak havoc on my body, but because testing for Lupus was not done often, nor is it today, that I was just sick. Well, that all got cleared up one day when I got really sick about 4 years ago. I was swollen up to the point that the blood vessels were bursting on the front of my legs, I was sore, and just felt terrible. I went into the emergency room where I live and the Doctor thought that I possibly had gotten bitten by a tick. They ran test and it came back negative, thank god (so I thought) and followed up with my regular doctor not much after that visit.

She was very unsure what had caused all of those symptoms and did a routine check, sending blood work out to Mayo Clinic. I did not hear back from her for about a week until I got a letter in the mail. It said Please call Doctor to discuss results of blood tests. I was like, "Oh freaken fantastic", I had just lost my Mom about a year ago to Cervical cancer and was freakin out a bit.

I called the Doctor and she said " you have titers high for R.A. and Lupus", I said OK, and then the Doctor told me she was sending me to a Rheumatologist. Good I thought, get it fixed and I can move on....LOL! Boy what an understatement. Not knowing what Lupus was or did, I called my mother in law and she told me it was an auto-immune disease and didn't know to much about it, other than it was kind of like M.S. I hung up the phone and cried...my life was over, or so I thought.......but the battle with Lupus was on!

It is all about me.....Please read first before you read any of my bloggs

I want to make some things very clear about this blog. I am not a Nurse, Doctor, or Medical Professional in any way. This blog will contain my story of what I encounter, religious references, headache, disappointment, frustration, joy, anger, laughter, breakthroughs, and success's. I will attempt to blog everyday, this will all depend on how my illness affect me.

Please feel free to comment, as long as they are not crass, mean, or belittling. You can ask questions, I will give you answers according to my experiences. If you want a more black and white answer or are interested in Lupus please go to www.Lupus.org. I refer to this sight often myself. Oh, and my spelling stinks sometimes.....that is not always from not feeling good! LOL

Now that we are done with this part, let's get going.