good news/bad news...

went back to my rheumotologist today and the first thing that she said was that I definitely do not have lupus. Good news. Then, as we continued our conversation, the nurse brought in the last of my blood test results. She looked at the paper and it was as though it all made sense to her. She pointed to my very, very high thyroid levels, and said, "This is why..."

She went out of the office to call my docs, made copies of my blood results for me. I kept looking at the numbers; I knew they were high because of the 'H' next to the numbers, but did not know exactly what it meant.

I have Hashimoto's Thyroiditis http://www.emedicine.com/med/topic949.htm and this is in addition to my amenia, my low IgG and IgA. I guess I need to follow up with the hemotologist, and an endocronologist.

So that is sort of bad news.

But to know what is making me feel like garbage for so long, to know it is not all in my head, and to know that there is something that we can do about it, that is definitely good news. Keep you posted!

Oh and I brought my rheumotologist a beautiful bouquet of flowers and told her that in the last year, I have seen, and complained to, four doctors at least six times, and no one had the sense to do a CBC. And she gets paid! What more could a doctor want from a patient? Eileen

No more veins!

went to the doc today to get a CBC; make sure I am keeping the blood they gave me. My other tests all came back fine... I have no good veins left so I better be fine! Will decide if I am ready to change the face again, but still am a bit sleepy!

Hospital infections, no surprise to me...

While in the hospital, my blood test indicated http://www.neutropenia.ca/about/index.html neutropenia which indicates a susceptibility to infections and precautions need to be taken, ie gloves and masks.

Immediately, masks were brought to my family... signs were posted on my door. the beautiful roses my girls brought me were removed from my room. Sounds like the hospital was on top of things.

Repeat blood worked needed to be done to see if I could have the scheduled tests for the following day.

But sadly, not everyone was with the program... As everyone sat in the room masked, a nurse came in to do my blood work. Mask on??? NO! My father told her of the precaution and she said, "Oh, no, that is only if you have a cold." She continued to work on me.

My dad said, "no you are wrong" but she continued. My dad went to the nurses station to complain. At first they said the same thing as her, but then the resident said, 'maybe she has a lukopenia precaution.' Yes, my dad said. They admitted that no one should be in there without a mask or gloves.

Literally 15 minutes later, someone barges in (is that sign really there or can people not read???) saying 'new patient coming'

I said, 'you can't put someone else here unless they are going to wear a mask!'

ONLY THEN did she look at the big note on the door... "Ohhhhhhhh." and she was gone.

Oddly, there are signed posted in the room about hand washing... But of course, that would require someone to READ them!

Even the next day, when I was on a liquid diet and then, no food, in prep for some tests, no one read the sign posted on my door. (I know that these people can read... the effort is apparently too daunting)

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Infections_in_hospital_reduce_the_risk?OpenDocument


During my ARDS hospitalize, I suffered a pseudonomas at the site of my trach. I have read a ton of articles about hospital infections and how they are passed, often from staff to patient. But until something is done to chage the minds of the staff themselves, patients like us will always be the loser.

I was awake this time; I also had family to advocate for me. But what if I did not.

it is, too say the least, frustrating to deal with all of this crap, and still be in ill health...

And even though my next blood test results were normal, I am still infection prone, with a low IgG and IgA and it should not be a fight to have hospital staff do what they themselves ordered.

OK, I changed the face....

but I cannot change it to a really happy one until I know what caused my decline! To be sure, I am feeling much better and stronger than I was, but hey, walking around without essential red blood cells did a number on me. Looking beck, even just to the ATS conference last month, it baffles me how I was able to go, function, and even speak cohesively given what I know now. Later this week, I am hoping to gain more insight into what is going on and then, once I do, the face will be a happier one!

I am home!

After spending a few days in the hospital, I am home and feeling much better. I received four units of blood, but they still are not sure where I am bleeding from, or if I am just not absorbing iron or what... But I will say this... I have felt like crap for about a year, really, really crappy for the last six months. And in that time, I have been to four doctors for various things, and told everyone of all of my complaints, which includecd fatigue, muscle weakness, itchy arms, dizziness, pulsating in one ear, low grade fever, and more. Even though one said that if my issue was not resolved, they would do blood work, he never ordered a blood test. Finally, when a blood test was ordered, it was only for specialized tests and not a good old CBC, which would have shown my hemoglobin at under 6. It actually was as low as 5.5. Everyone says that I was compensating... going to the gym four to six times a week, but man, it was tough. I was pale a lot. Tired... I believe that even though I complained, complained, complained... told my one doc that I complained to anyone who might listen, no one heard me! And I consider myself pretty assertive about my medical stuff. So, the lesson, to me and anyone who reads this, is sometimes assertive is not enough. Demanding is in order. I do not want people to learn for the future at my expense too many times. The ARDS was the first time... this is the second, andI do not want a three strikes and you are OUT situation with me somehow being the one who is out.

Finally...

They finally called to admit me! argh... most of the day is gone. I am very weary of hospitals after all I have been through. I am going to watch them like a hawk

going to the hospital...

I am going to go to the hospital sometime today. Repeat blood work indicates very low hemoglobin. Hopefully I will be out in twenty four hours... That is my plan... is it their plan, I do not know. When I get out, I promise I will change the face on the blog! Assuming that I am feeling better! talk soon!

have not posted in a while and hoped to post more than I have been. I think I mentioned in an earlier entry that this last year, I have been feeling sort of crappy... The last year, bad, but the last six months, really struggling with lack of energy and muscle weakness. And all sorts of other weird stuff... itchy (really itchy arms) with no real rash except the one I create from scratching! Ringing in my one ear. Low grade fever. And I have mentioned it to every doctor I see. ENT... neurologist... pulmonologist. Finally, a blood test. I guess a really crappy blood test because while it did reveal an elevated ANA, it did not check for my hemoglobin. But it got me to a rhumatologist and she did an extensive blood test. And today I learned that my hemoglobin is low. 6. Normal is 12-16 for women. http://www.medterms.com/script/main/art.asp?articlekey=15737 So today, more blood work. Anyway, this coupled with the low IgG and IgA, I am not sure what it means. But I am hoping that I will find out in the next day or so. Still, it is a bit comforting to know why I feel like, well, you know what. And if we can figure out what the F is going on, maybe soon, I will feel better and get my energy back. I hate having no energy. That is the worst. Or asking the kids to get this or that for me, not because I am being lazy (which I am sure is what they think) but because I just cannot fathom doing it myself.

The World is a Poorer Place...

I have spent the last two hours or so reading a story of courage, and dispair. Dylan Crane, a thirteen year old boy from Florida, was diagnosed with cancer. Dylan decided to document his struggles on his video camera. He won a local award and was going to see if he would win the national competition in October, but he never made it to that event. He passed away on June 8, 2005. Here are two links to articles... http://www.stpetersburgtimes.com/2005/05/22/Floridian/Through_a_lens__brave.shtml


http://www.sptimes.com/2005/06/10/Southpinellas/Dylan_leaves_a_legacy.shtml obviously, Dylan was amazing; his family should be proud of what he accomplished in his too short life. The World is a Poorer Place...

stuff...

sorry... have not blogged in a bit. Had my ten year ARDS anniversary, June 2, 2005. Have been feeling less well than in previous years. Went to the doctor and I was told I have a slightly elevated ANA. Don't know if that means anything when you consider my low IgG and low IgA but they are all immune related. Going to the doc in a little over a week. In serious need of more energy and less aches and pains. Enough whining tho! ARDS chat room is up and running; check it out sometime. Wednesday night, we will have a chat, but you can go in there anytyime. Hope to see you there!