Meanwhile.....

Originally I wanted to post this last Saturday, Dec 18. That was the one year anniversary of the beginning of my illness. I've thought about it all week...in between the baking, wrapping, shopping and taking care of my new granddaughter.

It's hard to believe that this time last year I was laying in a hospital bed attached to IV's, a catheter, and receiving so many medications I can't remember most of my week in the hospital. It was on Christmas Eve that we were told that I might have lymphoma and shortly after that I went in for a bone marrow biopsy.

So what has this year brought to me? Well for starters, an appreciation for good health that I didn't have before. I took my relative good health for granted and assumed that I would always be the way I was. I'm not a health nut, exercise freak or anything like that but I'm basically a strong person, I can walk, take care of myself and my family, and do things I like to do. When I couldn't even roll over in bed without help and suddenly needed help to get dressed, brush my hair and put on my socks, I realized how much I had lost.

I also learned that being a patient patient makes dealing with something like this a lot easier. I wanted to speed through my recovery but my body wouldn't cooperate. I found myself thinking a lot about people who are trapped in bodies that don't want to work...the elderly, people with muscular dystrophy and others whose bodies are twisted and frail who have minds that are functioning like any other normal human being. It really stinks relying on others to survive through taking care of your basic needs. Patience has never been a virtue of mine but I'm learning.

Probably one of the most important things I got this year was a new outlook on the power of prayer and my own faith and the faith of family and friends. I have a firm knowledge that I was healed of all my infirmities by my Father in Heaven. I also believe that if it were His will that I die, that no prayer could have kept me here. I think that prayer brought me and my family great peace and the ability to get through this trial with power and strength and that it was the Lord's will for my life to be spared. There are so many who pray for healing who end up dying. Are their prayers less powerful, are they not heard? I don't believe that is true. I believe that prayer for the Lord's will to be done and for our acceptance of it is probably the most significant things one can learn in life.

I'm grateful that it wasn't my time to go. I would have missed out on a lot of beautiful things. The first beautiful thing would have been witnessing the birth of my first granddaughter in March. I was well enough to go to Arizona and be there when she was born. It was one of the most miraculous things I've ever seen in my life, more so than the birth of my own children. She is a blessing to me.

I'm grateful for time that I've spent with my 9 year old son who was scared out of his mind that his mother might die. I've had fun watching him grow this summer and really develop a wonderful sense of humor. I love that he will come and sit near me and snuggle, that he will often come up to me and put his arms around me and tell me that he loves me. I'm grateful that I can do the same for him. He needs his mom.

I was fortunate enough to have my college age daughter home while I was going through this illness earlier this year. She was a rock to me. She had to dress me, help me go to the bathroom and had to see things no child should have to witness in a parent. I think it made her stronger and more appreciative, I know that it made me love her even more.

I'm grateful for the time that I've been able to spend with my husband. Things seem so much sweeter. We celebrated our 26th wedding anniversary and I've enjoyed reconnecting with him in a way that would not have happened had this whole thing not transpired. We are closer than we've ever been. I would have felt really gypped if I'd missed out on all the goodness that has come into our lives this year, especially becoming grandparents.

Our oldest daughter gave birth to our second granddaughter on December 4th. Another event I might have missed. It's fitting that this new life comes to our family this Christmas. Last Christmas was so depressing and mostly forgotten. My husband and I stood outside of the operating room when this little baby was being born via c-section. The nurse came to the door and opened it as this sweet baby took her first breath and cried her first cries. What a sweet and tender moment in my life. As we stood at the door embracing, I felt a happiness that I probably wouldn't have felt had I not gone through this last year. My struggle has made me appreciate life's blessings so much more!

Never thought I'd say this but I'm grateful for this trial. Life is so much better now because of it.

All crappy things come to an end....

I've never been fond of tunnels. I remember when I was young and growing up in New York. When we would go to Manhattan we either had to take a bridge or a tunnel to get into the city. From Queens we used the Mid-town Tunnel. I hated being in this confined space with cars whizzing past going in the opposite direction. (I don't know if you travel in opposite directions in the same tube any more but you used to) There were lights in the tunnel but something about knowing that I was 100 feet under the Hudson River and having my ears popping as we descended into the tunnel bothered me. It also freaked me out to see water dripping down the walls of the tunnel. The worst was when we had to go to New Jersey and go through the Holland Tunnel. It's 2000 feet longer than the Midtown Tunnel.

I always felt better as we would ascend out of the tunnel and you could really see "the light at the end of the tunnel". I could literally breathe a sigh of relief when we got out into the light. As an adult I still hate driving through a tunnel. Maybe that's why I found it so difficult to deal with "Mystery Illness" in the beginning. I was impatient and just wanted out!

Ten months have come and gone since I contracted whatever virus it is that started the one and only health crisis I've ever had. In the beginning I really couldn't see the light at the end of the tunnel. I was in too much pain, my health declined too quickly, doctors didn't know what to do for me and it was really frightening.

Today I had another follow up with my rheumatologist. I've lost 22 pounds since I last saw her at the end of August and since getting off of Prednisone. It's a good feeling. My joints, although stiff sometimes in the morning, generally feel fine. I do notice that it's still not very easy for me to get up off of the floor if I get down to scrub something or even when I was playing with my baby granddaughter. Sometimes my tailbone aches after sitting too long but after what happened to me earlier this year those are minor issues.

I do have to have my eyes checked and have an x-ray of the node on my finger and probably have it removed. I'll get my eyes checked but as for the node/cyst....that will have to wait until after the holidays. I'm in need of a working finger till then! A

I'm not a believer in the saying that "all good things must come to an end". I'm not sure I believe that. I believe that love can last forever, that you can be happy forever, and that "good" things are often a matter of your opinion. I do, however, believe that all crappy things come to an end. If you're mentally healthy you don't grieve forever, stay mad forever, hold grudges forever, and unless you're going to die you don't stay sick forever. Eventually you get better. I am getting better. The light at the end of the tunnel isn't attached to a train!

The illnesses of interesting patients fall into three categories:

The illnesses of interesting patients fall into three categories: rare disease, pseudodisease, and atypical ordinary disease.

I found that on this website....click HERE when I Googled "the interesting patient". I thought that it was kind of funny that they have something called The Interesting Patient SYNDROME.

Syndrome definition: In medicine and psychology, a syndrome is the association of several clinically recognizable features, signs (observed by a physician), symptoms (reported by the patient), phenomena or characteristics that often occur together, so that the presence of one feature alerts the physician to the presence of the others. In recent decades, the term has been used outside medicine to refer to a combination of phenomena seen in association. (Found that on Wikipedia so it must be true!) LOL

I don't know what category I am but thought it was interesting.

Anyway...today I had a follow up visit with Dr. Nandeeshwar. My dear Dr. Kazi is no longer in practice, he works for the Veteran's Administration doing research. He suggested that I go back to the rheumatologist that saw me initially. He was confident that she could handle any issues I had and that he would be in touch with her. I trust him so I went back to her today. True to his word, he had already been in contact with her and updated her on all of my issues.

My appointment was scheduled for 8:45. I try to get the first appointment of the day because she ALWAYS runs late and true to form she didn't come into the room until 9:30! How can you run 45 minutes late after only 1 patient? Sheesh! It is irritating. Her office is small and the exam rooms are like closets. As I sit there all I can do is look at the posters on the wall that look as if they've been hanging there since the Creation! Some of them are barely stuck to the wall with yellowed tape. They were all free too...from pharmaceutical reps. For someone who is making a bucket load of money from my insurance company can't they have some pastoral scenes on the wall. Make it more homelike and not so institutional. Thank goodness I had my phone and could get on Facebook and check my email while I waited, and waited, and waited!

I tried not to get irritated because lets face it, the last time I saw her I wasn't doing all that great and I am 1,000 times better than when I saw her in February. She came in and was very pleasant as was I.

Here's the 411....

On Friday, I'll come off the prednisone and will only be taking 400 mg of Plaquenil. Dr. Nan says that I will have to be symptom free for a year before we talk about coming off of that. She thinks there is a chance that I will have pain again after I come off the steroid and that if necessary I'll have to go back on the prednisone. I pray NOT!

I won't see her again for 2 months and at that point she will decide whether or not I need to have an MRI on my left index finger. I have developed some kind of nodule on my joint.

Here is a picture. My hands are VERY dry and so my skin looks more wrinkled and old than it is...well, maybe I am wrinkled and old!




You can see the bump on the inside of my finger. It's not painful but it is obvious to me that it's there. She thinks it might be a cyst. What the?!!! It's not hard like bone but it's not squishy either. It's just weird. But hey...this whole thing has been weird so why not!

I had blood work done, we'll see what that says, and for some reason she also wanted a urine specimen.

As a side note...Can someone out there figure out a better way to do that please!? I mean really you want me to pee into a cup that's the size of a small Dixie cup and sit on a disgusting toilet in a doctor's office. (Ok it wasn't filthy when you looked at it but it is a public toilet.)

And the process....sheesh...straddle the toilet, hold this little tiny cup in your urine stream and pray you have a stream and pray that you don't overfill the cup at the same time! Then you pee on hand. Remove the cup out from underneath you, and set it........WHERE DO I SET IT!? Oh...wait...I see where I set it, I set it on top of the stainless steel toilet paper holder where everyone else sets it. And how do I know that? Because I can see the rings from the various paper cups that have been set there, while people finish up the paperwork, and the uric acid has etched the stainless steel?!! EWWWW!!! But what choice DO you have? Set it on the floor? Ummmm...NO!

Some offices have a private bathroom with a little box with a door between the bathroom and the lab. And you KNOW that someone is on the other side of the box and they CAN hear you as you pee and place the little Dixie cup in the box. At least in the box there is usually a paper towel to sop up the pee on the outside of the cup. I am totally neurotic about the cup though. I have to wash off the outside so that there is no pee on it. Anyway...someone needs to figure out a better way. How about some sort of funnel? Ha! That thought makes me laugh out loud!

So...I will know by the weekend how the blood work and urine test came out and what I need to do or not do from there.

A hair in the head is worth two in the brush. ~Oliver Herford

Well for those of you waiting on pins and needles I can tell you that my hair is growing back. It's looking less frizzy, there are no more bald spots where you can see my scalp and it's actually getting thicker. It still doesn't look like it used to. When we look at pictures of my hair from B.M.I. (Before Mystery Illness) my hair looks like a WIG!

I really believe that using the Rogaine for the last month has helped the problem. I'm not shedding the way I was at all. My bathroom doesn't have to be vacuumed every day and I'm not losing hair when I wash it so that's all good.

Here is a picture before I started losing my hair:




This is a picture from today. (Don't pay attention to the mess in the background. We're moving in 13 days and the house is a wreck!) Oh and I didn't give you a face shot on purpose. I got up from a nap and let's just say it's not my best look!

Another Doctor Visit

I don't know if you've ever watched someone who is dying but they get this rattle in their chest known as the 'death rattle'.

I'm convinced that I have it! Not really... but I ended up at the doctor's office again today. I've been sick for over a week and yesterday I got so sick that I couldn't even really get out of bed. I have a BAD sinus infection that has moved into my lungs. Every time I breathe in or out you can hear this rattle in my lungs. Too much mucus.

I tried Mucinex....who invented that stuff? It should state on the bottle that it's only for men or women who have the ability to 'hock a loogie' from way back in the back of their throats because if you don't have that ability all it does is make you feel like you're drowning in snot!

I tried, Nyquil, Dayquil, Sudafed, Claritin, Excedrin....nothing worked. So finally today I went to the doctor. By now I really do have an infection and need an antibiotic and a cough syrup with codeine in it...THANK YOU! I'm sure my husband thanks you too since I sound like a grizzly bear when I'm trying to sleep. I've woken MYSELF up with the horrible sounds coming out of me!

On a positive note....

I think my hair is starting to grow back in. I've been using Rogaine for women and my hair is thicker on the top. Its kinda funny because you only put 1 ml of stuff on your scalp and rub it in. I try to get it rubbed in before it drips down on my face but a couple of times I've had some beads of Rogaine go down onto my face. I picture looking like this some day.....





But I really think my hair is going to end up looking like this....


I'll just be glad when my hair doesn't look like an add for Frizz Ease!

Wigs

The time has come....it's time to purchase a wig. I realized this as I looked at pictures from this last weekend of me holding my new granddaughter. My own hair has turned into something that looks like ragged Barbie hair. It's course and straw-like. I haven't started using Rogaine yet but I will start today in hopes that it will help my hair to grow in.

With all the hair that I've lost and continue to lose, you would think that you'd see some re-growth, but alas it is not so. I do appear to be getting more white hair and they are growing in curly and wire-y. NOT nice!

So...thanks to www.taaz.com I was able to do a little makeover on myself and "try on" some different hair.

Vote for your favorite. Be sure to vote on the poll at the top right of the blog.

#1.

#2...If I go blond I will have to get blue contact lenses.

#3

#4

I can try to get something closer to my natural hair color and style but if I have to do this maybe I should do something fun and totally not me? What do you think?

My hair

Here is a photo of my hair today. I've just NEVER had thin wispy hair...well maybe when I was born?

I Am Not My Body

I thought it was time to update my health blog.

I last saw Dr. Kazi on April 22 and a few days later he called to tell me that my blood work was mostly normal. My SED rate was slightly elevated which indicated inflammation in my body but that wasn't anything out of the ordinary considering my inflammatory arthritic issues since becoming sick in December.

By the time I'd seen Dr. Kazi I had been off of the Prednisone for about 2 weeks give or take a few days. I wasn't really feeling bad but I wasn't feeling great. Then another 10 days passed and I began to have a lot of pain and swelling in my knees, ankles, shoulders, hands and wrists. It was discouraging to say the least because more than anything I want my body to cooperate and just be "normal".

Dr. Kazi was kind enough to give me his personal and professional e-mail addresses so I sent him a message telling him of my pain. He replied right away and said that I should go back on 5mg of Prednisone and that we would probably add something called hydroxychloroquine in a few weeks.

Hydroxychloroquine, brand name Plaquenil, is an older medication used in the treatment to prevent malaria. That's right, the disease that is spread by mosquitos. For some reason, this drug also helps reduce swelling in the joints of people with Rheumatoid Arthritis. I wonder what person with RA went on safari, took this drug and realized that their joints didn't hurt after they took it?

Anyway...after being on the 5mg of Prednisone for a week it really wasn't doing much for me at all and the pain in my joints was so bad at night that I had trouble getting up the stairs again and I needed to take a hydrocodone in order to sleep at night.

Another e-mail to my beloved Dr. Kazi, 10 mg of Prednisone and 400 mg of Plaquenil later and things are starting to improve. I'm sure the idea is to give the Plaquenil some time to work (it takes 2-3 months in order to feel the full effect) and then to get off the Prednisone again.

As I was going through this particular period I saw the following video posted on my church's website.

This woman is clearly an inspiration. Although I have not been disfigured by this illness the way she has been in her accident, I can relate to her feelings of looking in the mirror and not seeing what she expects. Everyday as I look in the mirror I can see that my hair is continuing to fall out, the scars from my dialysis ports and PICC lines and I can see how my body has aged in these last 6 months.

At one point she says, "I am not my body." and that has had an impact on me on many levels. A person's spirit is who they are. The physical house of your spirit is not who you are. I'm blessed to be able to walk and talk and care for my family and enjoy sunsets and cool breezes. I'm blessed beyond description.

Enjoy this video and I hope it inspires you as much as it inspired me.

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.

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."

The Good, The Bad and The Ugly....but hey...I'm getting O.U.T.

My creatine is down to 3 something today. The renal doc on call this weekend came in to tell me that tomorrow they're taking out the port for dialysis and I can go home!!! I know all things are subject to change but I am SO ready to get out of here.

One thing I'm looking forward to is filling out the survey that the hospital will mail to me. We'll start with "The Good".

On the positive side....

1. My physician care has been superior with the exception of the doctor who was in the ER who admitted me. He's kind of a jerk and from what I gather doesn't have much respect from the rest of the physicians I've been dealing with.

2. Excellent care in dialysis.

3. A very comfortable air bed.

4. Attentive and caring nurses and patient care techs. One little thing though...men PCT's just don't make me feel too comfortable. I'd rather have a woman...just me.

5. A decent selection of free movies and TV viewing.

6. A cot for my loved ones.

7. Pretty decent food...except for cholesterol free eggs. Why bother even eating an egg if it has to taste like that? D.I.S.G.U.S.T.I.N.G. I just don't see how that little bit of egg yolk could have hurt me.

8. Getting my chest x-rayed right in my bed. That was a treat.

9. The nurse who put in the PICC line. Super good, super fast and right on the money.

Now for "The Bad".

I have a few suggestions to improve patient care.

Here are some of the highlights...

1. Do not wake people up at 5:30 a.m. to weigh them...especially since they're laying in a bed that will weigh them without disturbing them! Just push the freakin' button and weigh the person. Oh and do you really need to take away my pillows that weigh about 8 ounces? Is my weight that critical?

2. When you send someone in to take my blood why don't you have them just do the blood pressure, temperature, oxygen level, blood glucose and weight at the same time? Do I really need to have a different person come in to do each thing? It's like a parade of people in here beginning at 5:30 or 6 a.m. every day.

3. How about changing the sheets every day?

4. Whoever put in the toilet paper dispensers has obviously NEVER had to sit on any of your toilets and tried to get to the toilet paper. Reaching to your right and behind you is NOT a convenient place for the toilet paper. This is a pet peeve of mine since I used to put up these dispensers when I sold janitorial supplies.

5. Also...if you're measuring my urine output and you see that I'm making more urine...you need to empty the thing regularly. I do not want my urine overflowing while I'm using the facilities. EW!

And for "The UGLY".

1. This hospital was originally built in 1972. I am in the oldest section. The flooring in the bathroom is separating from the wall and is molded. Shouldn't a hospital bathroom be clean and pretty?

2. The toilet, well the whole bathroom, is not handicapped accessible. The first time I tried to sit on it I thought I was going to end up on the floor. Then I couldn't get off of it. They brought me a commode to put over the toilet but the bathroom is the size of a postage stamp so it's cramped in there.

3. Not a walk in shower...it's a regular bathtub and very small. The shower head hits you right on your chest.

4. The transition from the hard tile to carpet is about 12 inches from my room and every cart, bed, tray that comes down the hall has to be pushed across this threshold at such a high rate of speed and makes such a huge crashing noise that you think something has overturned every time they come down the hall.

Overall I have been VERY satisfied with my 2 week stint here in the hospital.

I was just asking my mom how much she thought this would all cost. She's thinking $300k. We shall see. I already have a stack of statements from the first 2 hospital visits that are about 2 inches thick...that is NOT a joke either.

If you have any guesses for the bill feel free to post your best guess.

I'm being held prisoner

Today's been a LONG day. I have been so bored. I am feeling much better and I am feeling ready to go home. I just want O.U.T.!!

My creatine level is still at a 4 but at least it's not going up. The renal docs say that I will probably have the dialysis port removed on Monday and then I can go home! That would be swell!

My rheumatologist, Dr. Kazi, came by today. I was totally impressed that he came to see me on a Saturday. He was off today but pulled up my chart from home and thought he should come and see me so he did. I like him a lot. Here is a link to his website...click HERE

Erik hadn't met him before and even Erik thinks Dr. Kazi is "charming".

Anyway...Dr. Kazi said that he thinks I am going to come out of the auto immune thing without any further problems. He's tapering me off the Prednisone and thinks once I'm done I won't need any further treatment. He also said that he wouldn't say that I'm out of the woods as far as the possibility of developing lymphoma. That will only happen if the next CT scan shows that my spleen and lymph nodes have gone down. I will have another CT scan in a couple of weeks and we'll compare that scan to the one I had back in December. I am confident that I do not have, nor will I develop lymphoma. I am grateful that he is my doctor. I like him a lot. It will be worth the drive to Dallas from my house to see this man.

I will be so glad to have this episode behind me. Yesterday I realized that I will have spent half the month in the hospital. That's just crazy if you ask me.

For the past couple of days I've been venturing off my floor and going down to the gift shop. Last night I wanted a banana so I went to the cafeteria. There I was in all my glory, lovely oversized hospital gown, black robe and flakes of dead skin all through my hair! I am sure the people in the line behind me were wondering why I was downstairs spending .64 cents on a banana...which I had to put on my debit card because I have no cash with me.

I've been showering daily but the hair part is much more difficult because of the PICC line and the dialysis port. It's such an ordeal to wash my hair because the line and port need to be waterproofed with some sticky tape and my skin is so sensitive that I can't tolerate any more tape. This afternoon Erik helped me wash my hair and although it's by no means "flake free" it doesn't look the Abominable Snow Man is living on my scalp any more.

Hopefully I'll be "paroled" on Monday. I'll keep you posted.

Am I posessed or What?

Ok...so I told you that I was going to be graphic so this post might gross some of you out. You might want to skip this post if you're of a weak constitution.

Last week when my skin was peeling off my face I had to peel it off. I mean really....the skin was so tight around my eyes that I had a hard time opening my eyes and the skin around my lips was so tight that I couldn't open my mouth to take normal size bites of food.

Let me preface this story for a sec...

About 2 years ago I developed a "zit" on my upper lip. I tried to pop the thing for a long time and finally got something the size of a small bead out of the thing. It totally left a hole in my face which I poured peroxide in and it closed and went away. Then about 6 months later it came back. I tried and tried to get the zit thing popped. I even took a straight pin to it to try and pop it and give the "bead" out of it but all I ended up with was a hole in the zit thing. My uncle, who is a dermatologist, saw it and said it was a colorless mole. I told him I could squeeze it and that stuff would come out but he said he could just cut it off. We didn't have time for that when I was visiting last November so I came home and tried a few times to "milk" it.

Anyway...while I was peeling my skin, this little area on my upper lip was irritated and some pus started to come out of it. I pulled the skin and attached to it was a hard white "bead" again. It left a hole in my face again but it's closing up. It's the weirdest thing.

THEN the next morning I had a bite of Erik's breakfast. He had gone and gotten some eggs down in the cafeteria. A little while later I was looking in the mirror and noticed that I had something on the side of my tongue. I thought it was some food but when I touched it a hard yellow thing came out of my tongue and left a hole in it! What the?????

I told the doctor about it and she saw the hole in my tongue and was like..."I have no idea what that is...did you save it?" Guess I should have. It was just too weird. Between the skin thing, the zit thing on my lip and the thing in my tongue I felt like a total freak of nature!

As for my skin...I'm now losing the skin on my finger tips! This Bactrim has really done a number on me!

Today's health update is this....my creatine is down to 4. Dr. Rinnir asked if my family could live without me for one more weekend. He's thinking if I keep on the downward trend that I might be able to get the dialysis port out and go home on Monday? I can hardly wait. I'm tired of peeing into the "hat" in the toilet, I'm ready to eat some real food. I'd love a real scrambled egg.

They have me on a renal and diabetic diet. Thanks to the Prednisone I've developed a blood sugar problem. Anyway...do you know what you can eat on the renal/diabetic diet? Not a bunch. Not even a banana because the potassium can be rough on your kidneys when you're in renal failure. Thankfully Dr. Rinnir said I can have a banana. I also begged for a bagel with cream cheese and he said I could eat that too. I see light at the end of the tunnel!

How Dinosaurs Became Extinct

Today I kind of feel like these Dinosaurs. I've missed the creatine boat today.

My levels are still 5x higher than they should be. Dr. Rinnir, my renal doc, says that he was encouraged that the numbers didn't go up. He thinks they'll start coming down soon, that I can get the port off my chest and go home. He wouldn't commit to any certain creatine number but he is encouraged because I am making a lot of urine.

Dr. Rinnir is my hero today because I have been dying for some regular food. They're feeding me ok here it's just that I wanted a bagel and some cream cheese. He was like..."You can have a bagel. It's not going to hurt you." What I'd really like is a hamburger and fries, or some Chinese food...which let's face it is probably the worst thing for my kidneys now.

It hasn't been totally awful in the hospital. Luckily they have some free movies, I have the internet, Netflix and I'm resting a lot. I kind of feel narcoleptic because I can nod off mid sentence.

I've been getting up and walking more and more so that's good. Last night I went to the little kitchen area on our floor and met a nurse that had taken care of me early last week. She was visibly shocked and even said..."Oh my gosh, you're up...look at your face!" Tonight was the same thing, I was at the nurse's station and they were all commenting on how much better I looked. So I'm encouraged by that, I just need those stinking creatine levels to start coming down.

In the mean time my Mom is here staying with me. I feel badly for her sleeping on the cot they have in here. It's probably one level up from a prison mattress but she's been a sport staying with me. Tomorrow night she'll go to the house and stay there and I'll stay the night by myself. It's not that I can't stay alone...I just feel so much better having someone with me.

Tonight right before dinner the hospital chaplain came to visit me. He is from Nigeria. He spent about 10 minutes visiting with us. He said that several times a day he takes his patient list into the chapel to say a prayer for the people on the list. I was really quite moved.

I think that all of the prayers that have been uttered in my behalf have kept me from getting any sicker and that God has heard every prayer and plea for my health. I can't tell you how I appreciate them. There have been times I couldn't pray a complete prayer for myself and knowing that so many friends and family are remembering me has been such a blessing to me.

Hopefully tomorrow I won't miss the boat and we'll see those levels coming down.

Straight from the Horse's Mouth

Last night I finally had a rheumatology consult with Dr. Kazir. He is a very dapper looking man with pretty blue eyes. He wears glasses that come apart at the nose bridge. He came in to meet me and get my story. He said that medical charts lie. He said that people end up perpetuating theories and thoughts that may or may not be true so he wanted to get this story straight from "the horse's mouth".

He hasn't been back yet today but he wants to get me off the Prednisone. He also knows my current rheumy. They were "fellows" together at SMU. I trust this guy more than Dr. Nan. I know he's consulting with her and getting my history and her thoughts about my situation. I just have a strong feeling that he's going to figure this out.

As he examined me and spoke with me he asked me how I had such a positive attitude. I just told him that I felt that God was in control, that I had lots of people praying for me and that I was going to have to take one day at a time. Things are what they are and getting mad isn't going to change a thing.

Ok...he just came in. He said that he reviewed my chart for 2 hours yesterday and that he thinks I had a virus that is going to go away. He is tapering my Prednisone down 5mg a week until we're off. He thinks by then I won't need any medication. That would be wonderful! He also said that as he read the chart he wondered if they tested me for syphillis! WHAT????? Is he serious! NOT even a remote possibility! He also said something about a rare condition called sarcoidosis. He was just going through any and all possibilities. Anyway...I asked him if he would take me on as a patient once I'm out of here...he said yes so I will make the trip down to Dallas to see him once I'm outta here.

When I went to bed last night I had a lot of swelling in my legs. You could press them in and see a huge indentation. I worried about that thinking they might have to take me to dialysis to get more fluids off. Apparently my kidneys must be taking over. They are producing urine and I had to get up a couple of times during the night to use the restroom.

There is no more blood in anything so that's a HUGE blessing. Speaking of blood, my platelets are increasing so that's good and my creatine levels, which measure kidney function, are coming down. Normal is 1 and mine was 6.6 when I got here, it's down to 4 so I'm happy about that.

My mom will arrive tonight around 8 pm. I'm glad to have her be with me. She asks good questions of the doctors and will be able to remember what they say better than I am.

So there you have it...straight from the horse's mouth...Neighhhhhh.

Dialysis 101

This morning I went for another round of dialysis. I have a 4 hour stint down there. Thankfully I had at least gotten breakfast before I left.

Those nurses there are such a blessing to me. They smile and are happy and cheerful when they see me. I appreciate what they do for me. They're patient and kind to me.

One girl in the Hemodialysis unit is a young mom of 3, Victoria. She is Russian. I look forward to seeing her when I go down there. When I first get into the unit they make me comfortable in the bed and start cleaning off the leads to the port so they can hook me up to my artificial kidney.

For some reason it was difficult for Victoria to get the port to work correctly. I could tell she was a little upset that it wouldn't work but she kept trying different things. I quietly said a prayer that God would let those things work right and thanks to Him and Victoria she got the things going.

Two of my renal doctors were down there today too. I love these men for taking such good care of me. Pray for them too...Dr. Wall and Dr. Rinnir. They are really concerned for me and keep telling me to "Think Urine". As soon as I was done today I needed to pee so that was a good sign. They said that they're not planning on doing dialysis on me again...they're confident that in the next day or so that my kidneys will start working on their own. That would be SWELL!

One thing I learned today is that not only can the machine filter your blood and clean the blood but it also has the ability to suck off extra fluid from your body. Today they drained an additional 3 liters of fluid off my body...that's 1 1/2 Coke bottles of fluid! Come on kidneys....kick in there!

Still no rheumatology consult but I will be asking about that today. I need to get the rheumatological issues dealt with as well.

The blood docs say that my blood has stabilized...not gotten worse and slowly getting better. It's nice to know that I'm not in danger of bleeding to death.

Speaking of bleeding to death...no word about where the blood is coming from but they are thinking it's a freakish period. DUH...I'm the Interesting Patient remember!

Why the Blog?

I'm starting this blog to keep my friends and family updated on my ongoing health saga.

Most everyone knows what I've been through up until now. I'm suffering from some kind of auto immune crisis that's affected pretty much all of my organs.

Right now I'm in the hospital with renal failure. I have a port in so that I can have dialysis when it's necessary. So far necessary has been 4 times since Monday, Feb 15. I'll probably get sent down there again tomorrow.

This blog will be graphic and descriptive. If you're squeemish...don't read it. If you are faint of heart...don't read it. If it bugs you that people tell intimate details of their lives...don't read it. If you don't want to hear about my urine output...don't read it. If you don't want to hear about bloody boogers...don't read it. I think you get my drift.

I'm here to tell a story...my story.

Why did I choose the name, "The Interesting Patient"? Well...back in 1993 when my Dad was diagnosed with gall bladder cancer I learned that it's NOT a good thing to be diagnosed with a rare cancer.

I've learned now that it's also NOT good to be the 'interesting patient'...someone who does not have clear cut, easy to diagnose illness.

It's much easier for the medical world to say..."You're diabetic." or "You have breast cancer." When you have a host of things wrong with you and they have to "figure you out" it's much more difficult. They meet about you, consult with other physicians about you, bring in teams of people and try to figure it out.

My own renal doctors have joked how they need to call in Dr. House to figure me out. But they're trying and they meet and consult and reformulate ideas. I'm grateful for them.

The last two days have brought ups and downs. I've had 2 blood transfusions, platelets, plasma, fibrin infusions, nose bleeds that last 2 hours. The last 2 days I've been urinating but it's full of blood. No one is worried about it but it scares the hell out of me.

Yesterday I stood up to go to the bathroom and blood ran down my leg. They think it might be that my bladder got bruised and/or irritated when I had the Foley catheter in. Tomorrow we'll know more. I'm still bleeding when I go to the bathroom but we don't know where the blood is coming from. Could it be that on top of everything else I am having some kind of freakish menstrual cycle. PLEASE! Can we just shut down that factory already? SHEESH!

Thanks to a total allergic reaction to Bactrim I'm already a freak because I'm shedding my skin like a cicada. The skin is almost black when it peels off. If I were the person able to pick and peel the skin....I'd love it! I'm not so excited that it's me.




One thing about Bactrim...it's a BAD drug. Don't take it...get something else. They've outlawed it in the UK. Basically it's given me a huge chemical burn all over my body...and I do mean ALL OVER MY BODY!

So...I'll start the blog here and hopefully be able to update it regularly, maybe daily.

Time for me to put some cream on my face and try to go pee again.