I was busy, like I had a real life.

It's after 11pm. I'm tired but feel like I'm high on cocaine.  I got the jitters, my mind is racing faster then the speed of light. I just took 1.5 mg of Lorazapam  and still awake.

I met the cardiologist yesterday.  I think I'll have an affair with him.  He was pleasant, compassionate and just as focused as the pulmonary doctor I meet Monday. He explained that he can't start me on medication because they don't know what my lung and heart pressure is.  During the Cauterazation they will be giving me meds to see which ones suite me.  First I need an echo cardiogram. I could have had it of today, but no co-payment.  I don't want to ask my mate for anymore help.  She gives me such dirty faces, and sucks her teeth when i ask for money. let me leave it alone, I don't want to going there. So I'll have the echo next Wednesday, hopefully I'll have the Cauterization within two weeks from today.  This doctor asked me about taking Lasix and water pills.  I told him that the doctors had me stop taking them because my potassium levels were always low, despite the supplements I take.  He explained that it was the steroids that deplete the potassium. He asked if I felt good when I took the water pills, I told him I don't know what good is.  I haven't felt good in so long.   He told me, what I thought may have been an illusion, or a great sales pitch at least.  He said, I would feel better soon.  Can you believe this?  He said there is no doubt that I have COPD, IDL, PF and PH. But he believes since both my mother and father had heart problems, my major health issues may be my heart. 

Okay the heart, if that stops working that it, lights out forever.  But knowing what is wrong and being treated for it, is hopeful. Hope that maybe I will be able to live a little. Maybe using the oxygen less when walking. I still have to wait, but the wait is short now. I just want to do this test and move on to the next stage.

I went to the NYC Hospital Tour last night. As always they give you the assress to the hospital and not where the seminar will be at.  Access-A-Ride let me out in front of the hospital. I found out the seminar was around the corner.  I walked, got cramps in my legs, pains in my chest and tears in my eyes, I made it.  I called Access-A-Ride and asked them to adjust my pick up location. No problem I was told. Hump!

I assisted this lady with the same issue with Access-A-Ride. That done we went in and helped our selves to baked ziti, string beans, rice, chichen in gravey with vegatables.  There were cut mellons and pineapples and cookies.  I had a coco-cola, well two.  I use to be addicted to the stuff.  Stopped drinking it regularly about 6 years ago. Loss weight too.  I just couldn't resist.

There was a Dr. Beckerman who is conducting surveys, with the Yeshiva University.  She is trying to find  out, what we as lupus suffers/survivors are feeling.  What are we going through. In addition , they are working to educate doctors in how to reconize Lupus symptoms.  I know, that if the doctors that I saw years ago knew the right questions to ask, I may have been able to treat this lupus earlier in my life. But that's neither here nor there, the past is past, and I am trying to move on.  But at least some other poor luppie may benifit from this training.

There was a Dr. Mackay who discussed the strides they are making in research.  Speaking of our anticipated Christmas gift hopefully. Then the head doctor of Jamaica Hospital Ophthalmology department spoke to us about our eyes. He explained that doctors takes their lupus patients off and on plaqueline in an effort to save their eyes. He said damage from plaqueline, if discovered early, is reversable.  He explained that any problems that may arise in the eyes is very painful. We can't see it by lookinf at our own eyes it must be done by an ophthalmologist.  Symptoms are dry eyes, sores on the lids sometimes inside.  Also cataracts develope as a result of steroids. Basically we need to have our eyes check at least every six months.

When the meeting ended, several of the patients swarmed the buffet and took the food home.  One lady even brought her own tuperware. The program was video taped and should be aired on the NY Lupus Foundation web site.  If they got me in any of the shots I will be the baby elephant.  Doubt if I'll be in any shots though.  I felt left out. I wasn't people spoke to me, I'm just lonely and wanted conversation.

Any way I went outside and the lady I helped with Access-A-Ride was still there.  She called them and they told her the bus was going to come to the new address.  I called and they told me that they weren't coming to the new address, that I would have to walk to the other side of the building. The lady and I walked, entered the ER through the ambulance entrance.  We walked through and no one stopped us. We made it to the front of the building and my car pulled up.  The lady however missed her bus.  I felt so bad for her. I was so angry, I cried of course.  Again, my calves cramped up, and my chest got tight.  If I had money I would have gotten taxi authorization back. But as it was I asked my mate for $4.50, $2.25 to get there and $2.25 to return.  I didn't have a penny more.  Had I missed Access-A-Ride I would have been stuck.  I guess I would of had to walk, I damn sure wouldn't have called my mate. When we met she told me she would take care of me. Funny how things change. When we met I was working and making good money.

Now it's 12:30am and I am till wide awake.  I can't turn the TV on it others her. So I'll read my nook and see if I can get some sleep.