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.

There's No Place Like Home

Had someone given me a pair of Ruby Slippers 2 weeks ago I would have wanted to click them and repeat the familiar refrain, "There's no place like home" and be whisked back to the safety of my own house. In retrospect it's good that I didn't have that ability because I really needed to be in the hospital.

I was cleared by my renal doctor, Dr. Rinnir, yesterday morning to be able to go home. He said that I don't even need to follow up with him. I'm supposed to follow up with my rheumatologist and send blood work to Rinnir.

Yesterday was a little stressful because although I was anxious to go home I had to have the PICC line and the temporary dialysis port pulled from my body and learn how to give myself insulin shots.

One horrible side effect from the Prednisone is that I've developed what we're hoping is a temporary bout of diabetes. I am now on insulin until I'm off the steroids.

When I had the dialysis port put in my chest they didn't knock me out but they did numb the spot and I was pretty out of it besides that. I remember pressure and then it was done. The PICC line was another "pressure" thing...not painful.

I was petrified to have them pull those things out though. They brought me down to some room in the hospital where they put in all the drains and stuff and an abnormally hairy doctor came in to take the dialysis port out. I warned him about my skin sensitivity and I told him that normally I have a very high threshold for pain but that I was nervous that it was going to hurt...especially since he was not going to give me any form of anesthesia. As they say in the South, he "didn't pay me no mind" really. He told me he was going to clip the few stitches and then he'd apply pressure to the entry point and then I'd be done. He asked me to count to 1492. By the time my brain grasped the oddity of this number the port was out and I hadn't felt a thing. One down, one to go. The PICC line was basically the same thing but my nurse did that. I kept the PICC line. I'll use it for an object lesson at some point.

In the afternoon the diabetes counselor, Beth, came in to bring me my insulin pens and needles and to show me how to give myself the shots. In the old days they would give you a vial and some needles so you could give yourself insulin. Now they give you a pen that's loaded with a set amount of insulin and you dial the amount of insulin you need and stab yourself with the pen. In fact Beth told me to do it with a stabbing motion.


The needles are small and you screw them onto the top of the pen every time you need to give yourself insulin. I am supposed to test my sugar 15 minutes before I eat and then determine how much insulin I need to give myself using a sliding scale.

Then it was time to "practice". I am really not a sissy when it comes to pain. I usually have a very high tolerance for pain but my face got so hot and flushed at the thought of stabbing myself with a needle. I practiced into my thigh. I pinched the fat...a very easy task...and then stabbed the thing into my thigh. It wasn't bad. In fact I've given myself 2 shots since I've gotten home and I really can't feel it. I'm going to have to learn what works for me as far as the number of units to take. Last night I think I took too much and it made me a little dizzy and by bed time my blood sugar was 80 and I needed to drink some juice.

I'm also supposed to give myself a shot every night of a maintenance insulin type drug. Erik did not want me to take that shot last night because my glucose level was already within a normal range. I will have to call Beth and make sure that I'm not going to send myself into a coma or anything by taking the maintenance drug at night. The directions say that I should take it at night regardless of my blood sugar. I think Erik's just being extra cautious because of all I've been through already.

I got home yesterday around 5:30 and my Mom made a great dinner and we watched some TV. Around 9:00 I was crashing on the sofa so I went up to bed.

It was so lovely to go to sleep in my own bed! I did have to leave a light on in the closet because I was afraid that I'd wake up in the night and not remember where I was.

Today I've been trying to take it easy. I have started a couple of loads of laundry and I actually feel pretty normal. My legs are weak and I'll have to get used to going up the stairs again. It's amazing how quickly your muscles atrophy when all you do is sit in bed and go for short walks. I couldn't really move much until last Wednesday and I know it'll be a process of building strength again.

It was great to get a shower today without all of the paraphernalia that I had to wear in the hospital. I had to cover the port and PICC with plastic and it was just a difficult process. Today I was able to really scrub my hair. You should have seen all of the hair at the bottom of the shower! I feel like a cancer patient. I mean really...I've never shed so much hair. I don't know if it's because my scalp is also peeling and it's loosening the hair or if the small doses of Methotrexate that I took actually did this to me. Lucky for me I have a lot of hair but if I get any bald spots I'm going into seclusion! That will just be the straw that breaks the camels back! Vanity....it's a sin but seriously...I will not go out of the house looking like I'm on chemo. And I will not buy a wig!

Just because I'm out of the hospital doesn't mean that I won't be blogging on this blog any more. I've got a long road of recovery ahead of me and I'm sure there will be more stories to tell.

For now, I'm home and there really is "No place like home."