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My family

Embrace Today By: K. Wilhelmina Floria

Tears of happiness shall fall,
listen close for your destination call.

A river of tranquility flows through life.

Ride out the eye of the storm, pass the strife.

Saturday, August 28, 2010

Day One

I woke up this morning deciding I’m not going to let my heath win. I’m going to fight. I stepped on the scale; I weigh 309 pounds, the size of a baby elephant!! My blood pressure was 146/77.

Today I plan to juice and drink cantaloupe and eat some Kashi Go Lean cereal with Almond Breeze milk. I’ll drink a cup of coconut milk. I plan to make some tuna salad, eat frozen grapes and maybe broil a chicken breast for dinner. These are my plans, just as I plan to exercise this morning. Maybe tomorrow, that will take a little more encouraging from me.

Here’s the deal, in August of 2008 I was having difficulty breathing. I figure it was the smoking. I smoked since I was 8 years old. I’ve been around cigarette smoke since I was born. So hell my lungs must be totally destroyed. Mind you I had stopped for a few months then started back up. But there was something a little different this time. It hurt to breath; I couldn’t walk, without gasping for air. So After work I decided to drive myself to the emergency room.

I found parking right on the corner. Oh I should tell you the car I was driving was a 20 year old Honda Accord that was full of mold. Which I thought was the issue. I sat in the car and smoked the last cigarette I had in the pack and knew they were going to give me some antibiotics and send me home.

They stuck me, poked me and x-rayed my insides and said they were keeping me. All those years of smoking has finally caught up with me. I knew they were going to tell me I had lung cancer or emphysema or both, my days were numbered, this is it. I knew the outcome wasn’t going to be good, especially since they weren’t telling me anything.

After a week they told me I had COPD, emphysema for sure, but something else was going on. They suspect that I had lupus, and it was in my lungs. Yes that is my diagnosis, ‘LUPUS SLE’. My mom had Lupus and I had symptoms my whole life but the doctors always dismissed my concerns, I guess they thought I was a hypochondriac. My hands swelled and hurt, I got a rash whenever I was exposed to the sun, being tired all the time. The doctors could never find anything wrong with me. I had an ear infection and had a bad reaction from the antibodies which contained sulfa. Two of my children were born a month early. These were clues but never put together.

They talk about markers; they talk about Lupus being hormonal. The year before I was diagnosed I had a hysterectomy. Everyone kept telling me I was going to feel good after they pulled out my pipes. I was waiting to feel this great feeling that never came.

I wish the doctors were more knowledgeable asked the right questions and maybe I wouldn’t be going through this downward spiral in my health.

Sometimes I feel better. I’ve been on steroids for 2 years and added a hundred pounds to my body that was already over weight. I use oxygen when I walk outside. I take a fist load of medicine in the morning, more in the afternoon and even more before I go to bed. I take Benadryl to help me sleep, which is no longer working. Sometimes I take 2 Motrin 400mg each to help with the pain and to help sleep. But no matter I still get up all night to go to the bathroom. I mean my body is so tired I don’t want to move, but I got to because my bladder hurts. I found that if I take the Motrin and Benadryl together I sleep all night. But no matter how long I sleep I'm still tired in the morning.

So I have Lupus SLE, Emphysema, Interstitial Lung Disease (IDL), Sever Sleep Apnea, Depression, Anxiety, Acid Reflux, Seasonal Allergies, Sinus, and Varicose Veins. I’ve told the doctors that I have chest pains and a pain in my back on the left side where my lungs are. My memory is bad, I get these dizzy spells. They shrug their shoulders. Here we go again I must be a hypochondriac, imagining these things.

I met a doctor for my IDL, he’s a transplant specialist at Columbia Presbyterian Hospital. He said my Emphysema and IDL is minor but suggested that I have Pulmonary Hypertension (PH). Another fucking diagnosis! He recommends that I have a Heart catheterization I spoke to my Rheumatologist and she says they don’t do that at our clinic and she doesn’t think they do it at any of the city hospitals. Did I mention I don’t have insurance? (Make too much too for Medicaid and not on SSD long enough to get Medicare.)

So reading up on PH, it’s a rare disease, the blood pumping from the heart to the lungs and from the lungs to the heart builds up or something. It’s a progressive illness and untreated the prognosis is not good. I had a stress test that shows some activity on the right side of my heart and the results indicated that I had a heart attack at some point. I had an echo and it doesn’t show any blood clots. The only way to confirm PH is with the heart catheterization. Symptoms, fatigue, angina, shortness of breath upon ambulation and dizziness which I have been complaining about for years, even before lupus, when I had health insurance with my employment.

I am so anxious to get this heart catheterization so I can take yet more meds, but hopefully finally feel good and give me an extension on my life.

So this is the start of my story, my battle against this horrible Lupus and all that it has brought with it. I’m going to lose these 150 pounds of water, fat and blubber! I’m going to exercise and eat healthy. I’m praying and going to write this here blog and hope someone reads it and encourages me. And if in the interim I inspire someone I will feel it is worth my time.