Whether you're a brother or whether you're a mother, you're stayin' alive, stayin' alive.

The Bee Gees have nothing to do with my post but I got the lyrics in my brain after my doctor visit today and I know you'll be singing right along with me.

Well I'm not a brother, but I'm a mother....oh that SOOO doesn't sound right but some people might actually think that! HA!

Today I had my follow up visit with Dr. Kazi. He really is a unique doctor! He came to say hi to me while I was checking in to say that he was happy to see me.

After I got into the exam room he came in and sat down on the rolling stool. He looked at me and said, "I'm so glad to see you. To be quite blunt I'm surprised you're alive!" He told me that I had been really really sick and that I looked great now. I have to say that I was a little taken aback by his comment but acknowledged that while I was in the hospital I didn't really comprehend the depth of my illness. That was probably a blessing.

He looked over the last set of blood work, ordered more blood work so that we can see a comparison but thought that he wouldn't really see anything that would show that I was still having problems. I do have swelling in my joints but after tomorrow's results on the blood work we'll know where to go. He really feels like this is just going to disappear altogether and that I won't have to deal with this any more.

I will see him again on June 22 right before he leaves this practice. He is going to work for the V.A. as he got a 12 million dollar grant to do some research. He will spend about 30% of his time seeing patients and the rest doing his research. He said that he will keep in touch with me and will see my husband at work so he'll know how to get a hold of me. He also said that if I want to continue to see him that he'll figure something out. He's just a good man and a great doctor.

I really feel like it was divine providence that I ended up in Dallas Presbyterian Hospital and got to have this man as my doctor.

Kamikaze

This is my rheumatologist, Dr. Salahuddin Kazi, I bet he got called Dr. Kamikaze at some point in his life. I'll have to ask him. You can't see it in this picture but he has beautiful blue eyes. He also has those breakaway glasses I told you about...the ones that come apart at the bridge. Anyway...

Tomorrow morning at 11 I have my first follow up appointment with him since being discharged from the hospital on March 1. I was supposed to see him on March 25 but I was in Arizona witnessing the birth of my first grandchild. I'm going to ask him lots of questions with one of them being if he really thinks I need to follow up with the oncologist and have another CT scan of my spleen. They even mentioned doing another bone marrow biopsy at one point. Frankly I don't think I need to have a visit or the biopsy. I'll do whatever Dr. Kazi thinks is best.

My joints are on fire today after going to an exercise class that put way too much pressure on my knees and major joints. I'm probably better off sticking to walking. I'll ask him about that too.

Maybe I'll ask him where he got his cool glasses. More tomorrow.

Your one true beauty

In the movie, Little Women, Jo sells her hair to make a wig so she can make money for the family. Her whole family, shocked, sees it for the first time when she takes off her hat and instead of seeing the abundant long hair she once had they see her short hair. One of the sisters exclaims with a sad voice, "Oh Jo, your one true beauty!"

That's kind of how I feel. I don't have much about me that is beautiful but I did have great hair. Every hair dresser has told me how wonderful my hair is. It's thick and shiny. Well it was....here is what I have now. Thin, brittle and falling out. Handfuls every day.

Raquel Welch, I have an idea for you

Dear Raquel,
I'm losing my hair due to being poisoned by a drug. Every day I wash my hair and every day my bathroom floor looks like a bad shag rug! My hair is getting thinner and thinner every day. I'm looking at wigs...yours in particular. Today I came across this website for your wigs...click HERE.

Not only do I want your wigs but I want your body! (Not in a sick way.) You're how old? Right now you're 69 but you're going to be 70 in September...I looked it up. I also saw you on Oprah a few weeks ago. You've had so much plastic surgery that you look like you haven't aged. Are those your real boobs or are they fake? Hmmm...I'm guessing fake. Anyway...you also had on what looked like a pair of Spanx only they went down your legs like pantyhose. I want those but I want a pair that will go from my neck, down my arms, to my finger tips and down my legs to my toes. I'm kind of picturing something like one of those suits that burn victims wear but much more fashionable for those of us trying to look slimmer and hold in all the jiggles.

I know you have jiggles...you're 69 for heaven's sake! Don't lie...just tell me where you got them.

Anyway...I said I have an idea for you....besides the wigs can you sell us your body? Again, not in a sick way...I just want to use your body with my head for a little while. You probably know a way to make that work. If you can't do that can I at least have a free wig? Just one. I'm thinking about changing my look completely if I'm going to wear a wig. What do you think?





I'll take any free wig you want to send me but I'm thinking long flowing hair might be a nice change. My husband says that my skin tone isn't really suitable for blonde hair so maybe something red or something brown with blonde highlights? Why don't you just surprise me.

You don't have too long to make your decision because I'm thinking of shaving my head and I'll want to cover up this bald head A.S.A.P.!

Thanks for taking the time to read this Raquel. Looking forward to hearing from you.
Me!

Your face is so, so, so.....ROUND/FAT

Found this photo on the Internet and thought...this baby looks how my face feels!

I'm down to 5mg of Prednisone and although I have lost 30 pounds my face is still very round. My skin feels hard too. Like the tissues got pumped up too much!

To top off my fantastic look I'm also still losing my hair. It's not coming out in clumps but I swear I am losing handfuls of hair every day. If I'd saved it I might be able to make a wig for myself.

I'm feeling so much more like myself before I got the "Mystery Virus". I'm just wishing that the side effects were over. I still have skin that is peeling on the bottoms of my feet, the hair and the Prednisone face. I'm ready for it to all go away.

Going up the stairs is no longer an effort so that's awesome and I don't feel like I need a nap every day. It's all good.

I need to schedule a follow up with the rheumy and with my hematologist and I'm hoping that I won't need to keep monthly visits with either one.

That's all for the update for now.

To Blog or Not to Blog

Some people think that I am giving out too much information about my life. Perhaps...but they're reading it aren't they? Funny how the ones who think you tell too much are the ones that check your blog like 50 times a day to see if you've posted anything new! Hypocrites!

Anyway...I updated my private blog and thought I should update my health blog as well while I was at it.

Remember...I'm graphic and telling it all!

So...it's been a little over a month since my kidney failure/Bactrim allergy/D.I.C./I almost died episode. I'm actually feeling pretty good. I went to see my PCP (the one that prescribed the Bactrim for me in the first place) about 4 days after I was released from the hospital. I needed her to write a prescription for insulin and I didn't really have time to deal with getting a different doctor.

Anyway...I think she probably realized that there is a possibility that I would go after her in court because she said that I am a scary patient to have. She wanted to know if there were "any drugs" that I could take without having a reaction because of my "underlying rheumatological issue". Well...I don't know but I think you should consult with my rheumatolgist before you write an RX for me now shouldn't you? I think that was her way of saying..."Listen honey you can try and sue me but my lawyer will argue that you're a difficult patient anyway so regardless of what drug I prescribed you were bound to have some problem."

Back to my health...

I am down to 15 mg of Prednisone this week. I've stopped gaining weight and have kept off the 30 that I've lost in total but my face is still round and puffy. At least to me. I can see it and even though my husband won't say it I know he sees it too.

My skin...let's talk about that. That damn Bactrim has done a number on my skin! I am STILL peeling skin from my waist down. When I take my clothes off you can see all the skin dust flying in the air! My hands are finally done peeling and thankfully I didn't lose my nails like some people do. Now my feet are peeling! And I mean in thick sheets! My toes, the tops, sides and bottoms of my feet! I can't believe how long it's taken this drug to get out of my system! In case you didn't get the idea...DON'T TAKE BACTRIM....EVER!!!!

My hair...let's talk about that! The day after I got home from the hospital I was finally able to take a shower without all the tape and plastic covering ports and whatnot so I was able to really scrub my hair. The skin on my head peeled...remember...Abominable Snowman type dandruff? Anyway...the first time I lost about a cup full of hair. I am still losing hair. When I blowdry my hair the tile on my bathroom floor looks like a shag rug from the 70's! Thankfully I started out with A LOT of hair and I'm hoping it will grow back.

On the plus side...I haven't had a menstrual cycle since December. Could it be possible that all of this has rocketed my body into menopause? That would totally be on the UP side for me! I'm not a big fan of the whole process to begin with and if it could just be gone and never come back I could REALLY like that!

That's all for now. All you closet Gladys Kravitzes...hope that was worth it for ya!

Realizations

Have you ever gone through something only to realize later on that it was worse than you thought it was at the time you were going through it? Does that even make sense?

I think back to when my Dad was diagnosed with cancer in May 1993. As I look back on those few months I think that God kind of put bubble wrap around me so that the feelings and emotions were kind of cushioned...almost to the point that I couldn't acknowledge the entire experience at once.

Today I was looking at the photos on my cell phone. I had forgotten that on the 2nd day of dialysis that I'd taken pictures of myself. I look like I'm dead! The skin on my face is pulling my eyes and mouth down and I look like I am moments away from death.

It was around Thursday last week that I realized that I totally could have died. I think that in the recesses of my brain that I knew that might be a possibility but I think the "bubble wrap" was around me and I wasn't really able to totally comprehend and grasp how dire the situation could have been.

I know that in the hospital I thought about the possibility of having to be on dialysis for the rest of my life. I did think about the possibility of dying but that quickly flew out of my mind. Maybe it's just that people don't want to think of themselves dying.

Since my Dad died I haven't been afraid to die per se. I'm not afraid of being dead...I'm more afraid of the "getting dead" part...the process of how I will die. I don't want to die in pain and I don't want to die without notice. I want to have time to tell my loved ones that I love them and spend time with them before I die.

It's a good thing that my thoughts didn't linger on the reality of how sick I really was. Dialysis, blood clotting/not clotting issues, skin falling off my body. It wasn't until I was up and walking around the hospital and the nurses and doctors were amazed at how much better I looked that the thought came to me that I must have been much more ill than I had originally understood.

Anyway....

Despite my better judgement I'm posting a picture of myself.

Pathetic!

I went to follow up with my PCP on Friday. She's the one who prescribed the Bactrim for me. I had contemplated contacting a medical malpractice attorney because she prescribed Bactrim for me knowing that I was on Methotrexate. From everything we read on line that is NOT a good combo. As I visited with her I realized that I might be "up a creek" if I tried to sue her because I was on so many other drugs and there would be no way to tell what really caused the allergic reaction. I have this basic rheumy problem to begin with and is that what could have caused the allergic reaction to be so severe?

I've been home for a week and I'm doing a lot better. I still feel tired but as far as the kidney thing goes I am not feeling any ill effects from that.

I am still taking insulin 3 times a day, twice a day it's Novolog and then once a day at night I take Lantus. Giving myself the shots isn't as bad as I thought it would be. However, I am anxious to get off of it and am hoping that once I'm done with the Prednisone I'll be done with the high blood sugar thing. The insulin and test strips alone are $100 a month!

As for my rheumatological issues...I'm down to 20mg of Prednisone and unfortunately I don't feel as good with the lower dosage. I can feel every step these past couple of days and I feel like my joints are stiffer. Dr. Kazi thinks that I won't need any drugs after I'm off the Prednisone. As I am lowering the dosage I'm not so convinced. We'll see. I'm willing to give it a chance. I don't see him again until March 25.