Reflecting

Lucky for me follow-up visits have been uneventful. I had one a couple of weeks ago and everything looks like it's fairly normal. My blood work did show that my CRP levels are elevated. CRP tests indicate inflammation levels. I have been feeling pretty normal with very little joint pain although my hip bones have been more stiff than usual in the mornings or when I  get up from a sitting position. Overall I am doing 100x better than I was!

Yesterday while my husband was at work, he saw our beloved Dr. Kazi and chatted with him for a moment. Dr. Kazi inquired about my health. After my husband updated him on how well I am doing Dr. Kazi said, "I've never seen anyone in renal failure like she was make a recovery." BAM!

That kind of hit me like a ton of bricks. I thought I understood how sick I had been. I was there after all. I was the one getting poked, prodded, tested, transfused, dialized, and all the other things they did to me. In a lot of ways it's surreal.

 On Tuesday, Feb 15th it will be one year since I found out that I was in renal failure. My husband, ironically, will be leaving on another business trip that day, just like he did last year (at my insistance) only this year he won't have to come back because I might be dying.

Anniversaries cause you to think back and remember. Some anniversaries are sweet, like your wedding anniversary or the birth of a baby, or your first date. Some anniversaries bring a lot of grieving. I never grieved so much in my life as at the first anniversary of my father's death. I didn't even grieve so hard at his actual passing.

I try to be a spiritual person and I am active in my church. I have a deep faith in God and in His plan for our lives. I have felt His hand in my own life many many times. I think that God really protected me from feeling scared and unsure when I was sick. I don't think that I realized at the time the gravity of the situation I was in...and it is probably a very good thing.

This last year has been so full of blessings and goodness in my life. I am so thankful to have been allowed to remain with my family. To become a grandmother to two sweet baby girls. To be a mommy to my 10 year old son. To be a mother to my grown children. To be the wife of an amazing man.

I'm glad I didn't miss out on any of it. I'm thankful that even though I was so completely miserable for the first half of the year that I had them and that there was so much happiness despite the pain.

Life really is good.

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?