VICTORIA'S MIRACLE

Yosemite Camping Trip!

2011-08-04T15:44:00.000-07:00

Hi Friends and Family,

I'm back! I have to tell you that the past six months have been a whirlwind of parties, friends and camping...yes, I said camping. A couple of weeks ago I went to Yosemite with a bunch of friends and camped out for a few days! I managed to escape the bears, thank god. I had a great time. A couple of years ago I couldn't even imagine sleeping on anything but a bed. It was quite a challenge because of the altitude so every task was harder than normal. I didn't have much endurance. Luckily, I had friends to keep me company and help me out...Thanks Lacie, thanks Telegraph Hiking Club. I am getting out more and more and I find that I am building endurance slowly. I am afraid to stop moving now that I'm moving. The fear of another flare keeps me motivated. I want to do everything while I'm in remission!! :)

Let's see what my next adventure will be...my 50th birthday is in November...hmmm.

Till next time,
Victoria

Chicago Trip

2011-04-08T09:24:00.001-07:00

So I'm back from Chicago and the news is good. My lungs are not getting any worse but I'm gonna have to stay on the prednisone and Cellcept to keep the inflammation at bay. Doc says it's a "relapse." Nothing else can be done right now. At least the pain is under control. For all their evil side effects, steroids work. I am staying positive. After all, I'm still vertical. :)

Chicago, here I come!

2011-03-29T10:04:00.000-07:00

Hi Folks!

Well, it's almost time to go back to Chicago for my 3rd annual post-transplant testing and checkup. I will be leaving Sunday. My best friend will be accompanying me and will be my caretaker. Today, I am doing well and my symptoms are under control due to the pain killers and steroids I'm taking. The immunosuppresant I'm on has yet to take effect. My doctor said it would take a long time to start working. I'm anxious to see how my tests will come out now that I'm going through this flare-up. I'm hoping for the best. It's going to be COLD in Chicago according to weather reports, so I'm taking all the warm clothes I can find. Highs in the 40s will definitely play havoc with my Raynaud's symptoms. Blue hands, warm heart...:)

Until I return,
Victoria

I'm Fine

2011-03-11T15:25:00.001-08:00

“I’m fine.” We say those words multiple times a day. How often does anybody ever really mean them? For those of us living with invisible chronic illnesses, do we ever mean it? If we don’t mean it, then why on earth do we say it?

We say I’m fine because it’s what’s expected of us, because how often does the other person really want to know (and even if they say they do, they certainly don’t mean they want an in depth analysis every single time they ask). We say I’m fine because we really don’t want to go into the myriad of appointments this month or the inconclusive tests, or the trial and error of medications. We say I’m fine because we don’t want to hear, yet again, the saga of how Great Aunt Muriel cured her Lyme’s Disease by drinking beaver urine and maybe, just maybe, it would help you too.

It’s easier to say I’m fine than say I’m tired, nauseous, every joint in my body hurts, I miss solid food, and I’m sick of being sent from specialist to specialist and feeling like a pincushion only to have people look back and say you’re always sick or what are you doing to yourself to keep having all this happen to you. Maybe if you did this… Or to be faced with looks of pity because you’re sick and they feel helpless because you being sick is hard for them.

I say I’m fine because maybe if I say it often enough, I might start to feel a little bit fine. I say I’m fine because I wish I was, because I want to be, I want to believe that someday I can be. I say I’m fine because it’s easier than the alternative, because I don’t want to lose anybody else because they’ve decided they don’t want to have the sick girl as a friend.

That’s the beauty of an invisible illness. You can say you’re fine because no one can see that you’re not. If I was covered with green and blue dots, it would be harder to hide, but I’m able to masquerade as a healthy person. So when you ask, I’ll probably keep saying I’m fine regardless of how I feel.

Thanks to butyoudontlooksick.com.

A Flare

2011-02-01T16:43:00.000-08:00

So, the doc says I'm having a "flare." The steroid isn't working so my doc here and my doc in Chicago have decided to put me on Cellcept. It is an immunosuppressant drug. I'll have to be very careful around sick people because I'm more vulnerable to illness on this medication. Hopefully, the Cellcept will help my joint pain. I'm still having difficulty walking and using my hands.

So, the next time you hear from me I hope to be much better.

Thanks for reading,
Victoria

Update

2011-01-28T12:08:00.000-08:00

Hi Everyone,

Just wanted to update everyone...I saw the doctor on Wednesday. He said I'm having a "flare." He told me to continue the short regimen of steroids and he gave me Vicodin. Finally, the joint pain is somewhat under control. If the steroids don't work, the doc says he may have to put me back on chemo. I'm trying not to worry about the future too much. Today I can walk so it is a good day!

I hope you're having a good day too.

Sincerely,
Victoria

Blip in the Road

2011-01-22T10:31:00.000-08:00

Hi everyone,

It's been a while since I posted an update here. While I have been doing generally very well, lately I've been hit with with the return of some old symptoms, one of which is severe joint pain. A couple of weeks ago I woke up and couldn't walk. My ankles, knees, wrists, hands and feet are all involved. I contact my doctor who called in some Prednisone (steroids) for me. I started taking the Prednisone yesterday and it has relieved some of the pain. I see the doctor next week and hopefully by then I will be much better. So, I'll hobble along until then.

Victoria

National Scleroderma Foundation Conference

2010-08-05T11:27:00.000-07:00

Hi Everyone,

I just got back from the scleroderma conference in Boston. It was a very good conference and I also got to enjoy some Boston sightseeing. I learned a lot and took notes, which I hope to share with my support group later this month.

I can't tell you how comforting it is to see 600 people who look just like you and who suffer from the same disease. I wish I could've taken all my scleroderma friends with me to the conference.

I continue to do well and am still in remission. Thanks to each and every one of you who helped me get to where I am today.

Gratefully yours,
Victoria

Scleroderma Support Group Summer Party

2010-07-26T19:19:00.000-07:00

I just went to our scleroderma support group summer party and had a great time with my sclero-sisters. I got to catch up with old friends from the support group and to meet new friends. Now that I am a support group leader, I want more than anything to find a cure for Scleroderma, and I am happy to volunteer for the Scleroderma Foundation...it is an amazing organization made up of volunteers who work to raise funds to find a cure.

It has helped me so much to volunteer, to get outside myself and focus my concern on the needs of others with this disease. I am a lucky one. To have had the opportunity to have a stem cell transplant which saved my life is how I was blessed.

I am forever grateful to the Foundation for being there for me.

Love,
Victoria

National Scleroderma Foundation Conference

2010-07-26T14:20:00.000-07:00

Hey everybody!
In just three days I'm off to Boston, MA, to attend the Scleroderma Foundation's National Conference. The Foundation is sending me now that I am a support group leader. I'm eager to learn new things about my disease and to get news about the progression toward finding a cure for Scleroderma.

I'm feeling fabulous these days and friends tell me I look SO MUCH better. I can't complain about a things these days. I'm back to excercising and seem to get better every month!

Again I would like to thank everyone for their support.

Love,
Victoria

Chicago Check-up

2010-04-07T19:43:00.001-07:00

Hi Everyone,

I just got back today from Chicago where I had my 2-year follow-up on my stem cell transplant. There was good news all around. First, the technicians were all suprised by the results of my tests, they said that the "numbers" were better. Dr. Burt told me my pulmonary function has increased two-fold from 22 to 44 which is not a common thing this early post transplant. Also my skin scores were all normal except for my fingers. While the Raynaud's and my shrinking mouth continue to be challenges for me, I am gratefull that I am alive and breathing and my quality of life has improved immensely.

Thanks you all of you for your support of me during my illness.

Living Well in Sacramento
Victoria

2nd Trip to Chicago

2010-04-03T08:41:00.000-07:00

Hi Everyone,

I'm getting ready for my 2nd year post-transplant trip to Chicago tomorrow. I expect no bad news because I have been doing very well. With the exception of my Raynaud's, I've felt good. It's going to be cold in Chi-town so I'm bundling up and layering on the clothes.

Thanks to all of you who have supported me up to this point...I couldn't have gotten through everything without you.

Victoria

It's Fall!!

2009-10-11T11:17:00.000-07:00

Yesterday Bob and I and Karin and Sheldon went to the Sacramento State Football Game...we won!! It was a great fall day! Also, My daughter, Gaby, went to her boyfriend, Phil's, homecoming dance.

As you can see I'm out and about so there may not be as many updates before. This is a good thing!

Later,
Victoria

Girls Night Out

2009-10-03T10:02:00.000-07:00

Hey, I'm back!

Most of my updates have been about my medical condition and the stem cell transplant experience...today I'm writing about living well with scleroderma. Since the transplant, I have gained a whole new perspective on life...I'm living like I'm dying...appreciative of every experience that comes my way.

Yesterday, I gave my best friend a ride to a very important interview and she got the job on the spot! We went out afterward to celebrate at our favorite place, R15 in downtown Sacramento. We had such a great time and met some really nice people while we were there. Just to be able to go out and have a couple of drinks and stay up late are pure luxuries in my mind, so I'm taking advantage of the freedome. After having been housebound on oxygen for so long, I can't get enough of new experiences...Here's to living La Vida Loca!

Here are some pics of our evening...Enjoy! Leave me a comment please...it's always nice to hear from people with whom I cross paths.

I love life,
Victoria

Update - October 2009

2009-10-01T19:32:00.000-07:00

Hi Everyone,

Just wanted to update everyone and say I'm doing really good. My pain is minimal and I'm out and about quite a bit. I'm just hanging around my empty nest these days.

Gaby sent me a bunch of pictures of her and her friends in San Francisco. There wasn't a book in sight...hmmmm. I try not to think about it. She's having a great time and making friends and learning, so I'm really happy.

Can't wait for fall to really kick in but I'm not looking forward to the cold winter...my Raynaud's has not resolved itself and it's back with a vengeance. All in all, though, I'm well.

Talk to you soon,
Victoria

An Update

2009-09-15T11:23:00.001-07:00

Just a short update to let everyone know that I'm doing well. Aside from some continued mild symptoms, I am walking and talking and, most importantly, breathing. We got our daughter off to college okay but she is very homesick so there are lots of phone calls, texting, and IMing going on. It's nice to be able to keep in touch these days...she even wrote us a couple of letters! She even came home for a visit...all this and she's only been gone four weeks! I think it's going to be a long year. I must say that I'm extremely proud of her for finding her way around San Francisco on public transit...she knows it so well that all her friends consult her first before going anywhere. She is also managing her classes well. She will be a member of the set crew in the upcoming production of "Proof."

So my nest isn't completely empty yet. That's okay by me.

Love,
Victoria

The Empty Nest

2009-08-30T09:46:00.001-07:00

Here I sit in my empty nest...a clean empty nest I might add. Now that Gaby is in college I can get down to the business of cleaning her rooms. I'm coming across toys from when she was a child and I can't help but get a pang of motherhood in my chest. I know I said I wouldn't have the "syndrome" but I do.

I'm feeling well physically and aside from mild symptoms of Raynauds and joint pain, my prognosis looks good. My rhuematologist retired a month ago so I'll have a new doctor...another one to train...LOL. I'm told she doesn't know anything about stem cell transplants so I will have to educate her.

My recent operation went well and I'm fully healed from that (which is a small miracle unto itself). Now to avoid the flu this fall and I'm set. Bob is doing great. He just got a clean bill of health from his doctor...no more cancer! We continue to take care of each other as best we can. These are good days.

Love,
Victoria

Today's the day!

2009-08-19T10:44:00.001-07:00

Hi Folks,

I'm doing well these days and I'm staying busy. Today I am taking my daughter to San Francisco State University to move her into the dorms. It's a bittersweet day for me. While I knew this day would come...I didn't really believe this day would come. But I prepared myself for this day nonetheless, so I'm heading up to Oregon tomorrow to visit family...that way I won't be in the big empty house right after Gaby leaves. And let me tell you, the house seems so much bigger and emptier when she's gone. When I was really ill, I made a goal out of getting Gaby graduated and ready for college. Now I've got to update my goal, I guess, so let's get her graduated from college now and into the world.

I'm going to miss her terrbly.

Victoria

Scleroderma Foundation National Conference

2009-07-20T09:54:00.000-07:00

Hi everyone,

I just got back from the Scleroderma National Conference in St.
Louis. I learned a lot and had a fabulous time. With some free time
on Friday I took a horse and carriage ride through the city and
took some pics. I have posted them here. It was nice to be with
other scleroderma patients (and stem cell patients) like me. I
learned quite a bit about what it takes to be a an effective
scleroderma support group leader. I hope I can live up to the
title.

Love,
Victoria

Updates

2009-07-16T08:48:00.000-07:00

Hi everyone,

This is a lonely house without my daughter moping about in it. Gaby is currently in Japan and, according to her recent phone call,having a great time there. Without having to run her here and there all the time, the days are longer and just a little boring. I'm not complaining, mind you. Boring can be nice. Now I have lots of quality time with my hubby too!

I got the stitches in my finger taken out yesterday and it is healing very well. This is new to me...I no longer have a problem healing like I used to have during the worst part of my scleroderma. Good healing is going to come in handy on August 8, when I have another hernia repair in my abdomen (my 6th procedure). After that it will be smooth sailing, I hope, and no more procedures for a while...perhaps forever.

Tomorrow I leave for St. Louis and the Scleroderma Foundation's National Conference. I will also attend some support group leader training sessions while I'm there. I have volunteered to become a support group leader so I can help others like me find their way out of their sclero-drama, which is what a support group did for me after I was diagnosed. Time to pass it on.

Always,
Victoria

Gaby's off to Japan!

2009-07-09T07:37:00.001-07:00

Hi y'all,

Gaby is off to Japan tomorrow and we're trying to get her packed and ready to go. She is a typical teenager and has put everything off to the last minute so everyone is stressed, including her. I think this trip will be really good for her...a chance to be on her own for a couple of weeks in a great learning environment. She will be able to practice her Japanese and hopefully restimulate her desire to continue as a Japanese major in college.

I'm doing great...I'm still walking up to eight block every day with no breathing problems. My finger is healing and I will get the stitches out next week...just before I travel to the National Scleroderma Conference in St. Louis, MO. The surgeon got most of the calcifications out of my finger but he couldn't get it all without leaving me a terrible scar.

For the next couple of weeks I get to practice having the "empty-nest" syndrome with Gaby off to Japan. I'll just have to force myself to not enjoy the silence in the house and perhaps I'll be forced to endure an afternoon movie, a leisurely coffee, or even shopping by myself...poor me!

Till next time,
Victoria

The National Foundation for Transplants

2009-07-06T13:29:00.000-07:00

Hi everyone,

Recently I was asked to write a blog for the National Foundation for Transplants so they could post it on their web blog. You can read the blog post at:

http://nftblog.blogspot.com/2009/07/words-from-scleroderma-patient.html

Another opportunity for me to do good...Now I'm convinced that someone is trying to tell me something..."Go and spread the word!" So here I go...

Fortuitously,
Vicky

The Not-So-Good News

2009-06-25T08:06:00.000-07:00

Good morning,

As usual, following a spate of good news, I should expect some bad news, so here it is...I have developed another hernia in my abdomen and I have to have (my sixth) surgery to have it repaired. Also, this morning I'm going to see a hand surgeon regarding a calcinosis developing on my left hand. Calcinosis is a by-product of scleroderma as is herniation of connective tissues.

This is the small stuff I've learned to not sweat, so let's hear it for some more good news!

Always,
Victoria

MORE Magazine

2009-06-23T16:52:00.000-07:00

Hi everyone,

I just found out that MORE magazine has decided to use a part of my story in their September isssue (in newstands mid-August). The Magazine wanted quotes from women with chronic illness to find out how the illness affects their marriage and general relationship with their spouses. I wrote to them and told them my story. My quote will appear in a sidebar to an article by writer Donna Jackson Nakazawa. As a friend suggested...my "fifteen minutes of fame keeps getting longer and longer."

As always,
Victoria

National PAH Conference

2009-06-21T08:37:00.000-07:00

Hi folks!

I just retured from the conference and my talk went well...or at least that's what many people said. It was sort of an out-of-body experience for me. I learned some things from the workshops and enjoyed meeting new people. I'm very proud that many people came up to me after I spoke and told me that I was an inspiration to them. That was my goal from the beginning, to help people see that there is hope for a healthier and better life.

Soon I will post some pics from the conference. I'm so glad I attended and I'm now looking forward to the Scleroderma National Conference in July in St. Louis.

Always grateful,
Victoria

Sunday Morning

2009-06-14T11:01:00.000-07:00

I'm just amazed by the changes in my skin and lungs since the transplant. My skin has softened and I can walk about eight blocks a day now without getting short of breath. These changes are how I've determined that the transplant was a success.

Summer is upon us and nothing says it's summer more than a teenager moping around the house. Gaby is enjoying her summer before college. In July she will be going to Japan and will be hosted by a Japanese family. Since her major is Japanese, she will be able to converse with people and get around easily. After her trip, she will have to start packing and get ready to move to the dorms on campus on August 19th...that's if she can find anything in that room of hers!

This coming weekend is when I speak at the Pulmonary Hypertension National Forum in San Francisco. I'm a bit nervous but I'm sure everyone will make me feel comfortable once I'm there.

Today we have some friends from Oregon visiting us...we're going to barbeque and just enjoy this beautiful day.

Toodles,
Victoria

2009-06-05T20:09:00.000-07:00

Gaby's Graduation

2009-06-05T09:21:00.000-07:00

Well today Gaby graduates from high school...as you know, I wasn't expected to be here to see this day. I am so proud of her...she has an A average and is an IB Certificate graduate. She deserves all the credit for succeeding while at the same time helping me to deal with my disease and my transplant. Today I am sad and happy...sad that my little girl is all grown up and happy that she is a beautiful, successful woman. In August, she is off to college and a whole new world of experiences.

Congratulations Gaby!

Love,

Mom

Scleroderma Foundation Support Group

2009-05-30T06:26:00.000-07:00

Good morning everyone,

This morning I will be heading our scleroderma support group meeting as a favor to our leader who is also my friend. Recently, many opportunities have arisen which are playing an important part in my recovery. When I was really down and out during chemo, I asked myself constantly what I could do to help others with this disease. Now I have opportunities to play an integral part in the recovery of others and in my own recovery too. Knowing that I have a purpose as a result of my experience is the most rewarding thing and helps me to deal better with my disease.

I will be speaking the the Pulmonary Hypertension Conference in San Francisco in June. Also, I have been asked to go the Scleroderma Foundation's National Conference in St. Louis as their representative!

When opportunity knocks...
Love,Victoria

Albuquerque, May 2009

2009-05-22T10:58:00.000-07:00

Hi everyone...

I just got back from visiting my cousins in Albuquerque and I had a wonderful time. My cousin Felicia lives in ABQ. Felicia came to Chicago while I was having my transplant and took great care of me. I promised if everything came out okay after the transplant and when I got better that I would go visit her...So I did. My cousin Christine, Felcia's sister, also came to ABQ and so we had a wonderful time together...us cousins.

We went to a spa where I also had a mud bath! The spa was great for my aches and pains. We also went to Santa Fe and ate at Burt's Burger Bowl which was featured in Diners, Drive-ins and Dives on the Food Network Channel. Felicia and I also took a trolley car tour of Taos and the Taos Pueblo Indian Village.

Good times, good times!

Love,

Victoria

Gaby's Senior Prom

2009-05-10T12:25:00.000-07:00

Hi everyone, I just wanted to post some pics of my daughter getting ready to go to prom. My little girl is not a little girl anymore!

She had a blast and I'm glad I was here to see her all dolled up.

Victoria

Senior Prom

2009-05-06T11:24:00.000-07:00

Hi all!

I've been reflecting on how far I've come since the transplant just one year ago. Today, I'm in the middle of helping my daughter, Gaby, get ready for senior prom and graduation and college. Just a couple of years ago, no one thought I'd be around to see my daughter off to college, so I'm so grateful to be able to do all of these things for Gaby. Just buying her prom dress brought me to tears, imagine what will happen this Saturday, when she puts the dress on with her hair and makeup done, I'm going to fall apart!

I'm so proud of Gaby, proud of the fact that she went through the toughest days of my disease and healing with me, and through it all she got As and Bs in school and she is graduating in just a few weeks from high school. We have award dinners to go to, graduation to attend, and senior night to get ready for, all of which might be stressful for alot of folks, but I'm so happy to be around to see it all happen.

Gaby goes off to college in August and I will definitely be sad, but at the same time I'm confident she will do well away from home, living her own life, because she's already perservered through the tough times here at home.

Thanks to all of my friends and family for donating to my transplant and allowing me to live and share these beautiful moments with my Gaby.

I will be forever grateful,
Victoria

2009-05-01T13:49:00.000-07:00

BEFORE

AFTER

I AM A MIRACLE!

California Pulmonary Hypertension Conference

2009-05-01T10:12:00.000-07:00

Hi Everyone,

I'm so excited because I've been asked to speak at the CA Pulmonary Hypertension Conference in San Francisco in June. I will tell my transplant story and hopefully inspire others to keep fighting their disease. I've been wanting to do this for a while...to motivate others through the frustrating maze of medical care and give hope to people suffering from chronic diseases.

I am a miracle!

Love,
Victoria

Good News

2009-04-18T11:32:00.000-07:00

Turns out the x-ray I just had taken was unchanged from the last x-ray, so what I'm dealing with is just the tailend of a cold. That's good news.

Last night I had my best friend and her husband over for BBQ. It was nice to spend relaxing time with friends. They did the cooking and I just enjoyed their company.

Still standing,
Victoria

Doctor today...

2009-04-16T09:49:00.000-07:00

Hi folks,

I'm doing well except today I'm going to the doctor to see if there is anything else that can be done about this cough of mine. The doc in Chicago put me on antibiotics and said that if the cough did not go away in five days then I need to see my doc at Kaiser. So that's the plan today. They think I could have a bacterial infection in my lungs or perhaps the beginnings of pneumonia. I think I just have an epic cold which will not go away completely. We'll see...

Other than that, we're just trying to jump through all the hoops to get Gaby off to college in August. Lot's of deadlines to meet and orientation to attend. I filled out so much paperwork and signed so many checks that I feel like I'm the one going off to college!

Wish me luck!
Victoria

Thursday in Chicago

2009-04-09T10:16:00.000-07:00

Hi Everyone,
Yesterday I saw Dr. Burt and most of the news is good. My skin score is now down to zero everywhere except my fingers and toes. My lungs had some rales and my pulmonary function tests scores went down, but the doc thinks it has something to do with this respiratory thing going on in my chest...i.e., the cold. My lung capacity has gone down to 47%.
Today I had the right-heart catheterization and my pressures are normal! That is the best news. The doc gave me some antibiotics to clear up the bug in my chest so hopefully those pulmonary scores will go up when my lungs clear up.
Today I'm on bed rest, but tomorrow we get to go home. I'm ready. I miss my husband and my dog.
So, good news for today,Victoria

Monday Afternoon in Chicago

2009-04-06T14:16:00.000-07:00

Hi everyone,
I made it through the battery of tests: blood draws, a pulmonary function test, chest x-ray, CT scan of my chest and an echocardiogram stress test (which was not as bad as I remembered).
Gaby met me for lunch and we went across the street from the hospital to Gino's Pizzeria. Then I went back to the hospital for more tests and Gaby went to the zoo (how she found the zoo, I'll never know--she is extremely directionally challenged).

I came back to the hotel to rest and then I went to see my friend Lisa who is in the hospital here. She has lost so much weight and appears to be very frail, but her spirits are up, up, up! They are letting her out of the hospital tomorrow and she will go back to her hotel until she is strong enough to fly home. I'm glad I got to see her.

Now I'm resting again so no more news for now. Thanks for all the well wishes. I should be getting the results of my tests later on in the week.I'm feeling very positive about all of this.

Til next time,Victoria

In Chicago

2009-04-06T05:17:00.001-07:00

Well folks, it's the crack of dawn and I'm here at the hotel getting ready to go to the hospital for a battery of tests. I'm a little tired from the flight getting in late last night, but otherwise I'm ready for anything they can throw at me...almost anything. I'm having a chemical stress test today and that procedure is absolutely medieval. Basically they give you chemicals to stress your heart and you feel as if you are having a heart attack...for those of us with anxiety issues, this is our worst nightmare.
Okay, no more whining, I promise. Well I'm off to the hospital. I'll write more later.
thanks for checking in,
Victoria

Wednesday

2009-04-01T08:42:00.003-07:00

Hi Everyone,

Just wanted to update you on my status. I still have a nagging cough and congestion from the flu but everyday I'm slightly better. Our trip is in four days so I'm hoping for a fast working miracle.

Gaby is in a flexible brace now so she can use her arm somewhat and I think she will be able to provide me lots of help in Chicago. We leave on Sunday for Chicago and will be there until Friday.

Hopefully I will be able to discontinue some drugs such as the antiviral and the pulmonary arterial hypertension drug I'm taking now. They are going to check my pulmonary pressures by doing a right-heart catheterization while I'm at Northwestern so if my pressures are down I should be able to stop the drug. One or two less pills a day would be nice.

I'm taking my computer to Chicago, so I will cotinue to update you on my progress.

Thanks for listening,
Victoria

Wednesday

2009-04-01T08:42:00.001-07:00

The Sickhouse

2009-03-24T08:33:00.001-07:00

Well, it's official...our house is the sickhouse. Everyone now has the flu. I think even the dog has it! I guess it's better that we all get it now and get it over with. I will be going to Chicago for my check-up in less than two weeks so I want to be feeling better when that time comes. I'm pretty much through the icky part but I have a deep cough that is unsettling. Hopefully, this too will pass.

Thanks everyone for the well wishes for my daughter. Gaby is getting used to the cast on her arm and the whining is down to a minimum. She will go to the orthopedist in a few days and hopefully they can put her in a smaller, more flexible cast. That way she can be of much more help to me on the Chicago trip.

I continue to walk three to four times a day, just around the neighborhood. My body feels so much stronger since I've been walking. I get out of breath if I try to go too fast, but I can walk at a pretty good pace on flat ground...all this without supplemental oxygen!! After my check-up in Chicago, if everything goes well, I am going to try and step up my exercise if I get the okay from Dr. Burt that my body can handle it. I think some exercises might even help the continued swelling of my hands and feet.

Mostly, it's a good day,
Victoria

When it rains...

2009-03-19T10:50:00.000-07:00

Well they say, when it rains, it pours...my daughter dislocated her elbow yesterday at drama rehearsal and we were in Emergency all night long so the doctors could reset her elbow and cast her arm. So now my daughter, who is supposed to be my caretaker on my upcoming trip to Chicago, needs a caretaker herself!

Also yesterday, the sheriffs department asked us to come down to the station to see if we could identify any jewelry which they had collected in several robbery investigations. I had my hopes up but unfortunately none of my jewelry which was stolen was among the jewelry at the station.

Plus, both my daughter and I are sick with the flu...I'm thinking we should due for some good karma soon, all things considered.

Hopefully, better news next time.
Victoria

Update on Lisa

2009-03-17T10:40:00.000-07:00

Lisa's mom sent the following update on Lisa this morning:

Lisa's breathing trials have been delayed due to high fevers that started last night. She is emotionally upset last night but this morning she is a little better. It has been frustrating for her to not be able to communicate, and she wants to have theventilator tube out of her mouth so badly. If she is not off by the end of the week, they will put a trac in which they don't want to do. Then they would have her go to rehab for several weeks to ween her off ... her lungs need to be strong enough to do this. Right now her lungs are very stiff due to the disease, they're still is fluid present, and inflamination.It has been so difficult to see her struggling. Prayers for her lungs to be stronger and that her fever will go away. I cherish your prayers!
Love,Shirley

As you can see, Lisa still needs our prayers and positive thoughts.

Thank you,
Victoria

My Friend, Lisa

2009-03-09T10:01:00.000-07:00

Most of you know about my friend, Lisa. She and I had the transplant at the same time and got to be friends while we were in Chicago. Well, Lisa needs your prayers once again as she is back at Northwestern Hospital in Chicago and not doing well. She is currently in ICU and is intubated as she was unable to breath on her own. Please keep her in your prayers.

Why some of us thriving and others are not I do not know. Miracles, prayers, support from loved ones, and luck of the draw seem to all be possible answers for why I'm still here and doing well. I am grateful for each and every day that I wake up.

I will be going back to Chicago myself in four weeks for my one-year check-up. I hope to beat the odds once again. Thank you for all of your support, I wouldn't be here without it.

For Lisa

Love,Victoria

Michelle Marron

2009-03-02T15:07:00.000-08:00

I'm sad to say that I just heard that another friend with Scleroderma died recently. Her name was Michelle Marron. Michelle had a carepage too and she'd often leave me encouraging messages on my page as well. Michelle also went to Chicago to get a stemcell transplant, but she was turned away because her pulmonary pressures were too high. I can't help but wonder if she'd still be here with us today had she been able to get the transplant. She, like me, was also on oxygen 24/7 as a result of her pulmonary fibrosis. She continued to have breathing problems after she returned from Chicago. She was supposed to have the transplant before me so she would often send me messages encouraging me to pursue the transplant as a viable option. She was one of the reasons I had the transplant after hearing of her story on Oprah and on her carepage. Below is the latest update from her carepage:

To all of you who have been following Michele's progress,praying for her, and cheering her on; I want to say thank you fromthe bottom of my heart. I lost Michele on Jan. 31, 2009. Michele isthe love of my life, my best friend, and made everyday so veryspecial. They say you grieve more the closer you are to the person.Therefore I am lost. Again, thank you for being there forMichele.
As Always,
Gary

Please pray for her husband and family that they may get through this terrible time. I will miss her very much. I continue to wonder how many people must die before the transplant will be accepted by medical community and insurance companies. In my opinion, just one person is one too many.

Love,

Victoria

I'm getting old!

2009-02-22T11:57:00.000-08:00

I'm getting old...my daughter just turned 18...which means I can't go on telling folks I'm 29 any longer. We had a nice week...Gaby had friends over for her birthday and then she and I spent the weekend in San Francisco's Japantown. Gaby got to practice her Japanese! We had a very nice time.

Originally, I planned the same trip for her 16th birthday, but right after I made all the reservations the doctor started me on chemotherapy and I became too sick to travel...a big disappointment for both Gaby and me. So our trip this time was very special in many ways...I was able to celebrate with Gaby and keep up! We went to a traditional Japanese spa and bath which was very relaxing. We also got our fill of Japanese food!

I'm very grateful to have been able to have our weekend...in spite of getting old!

Much love,

Victoria

Update

2009-02-11T08:11:00.001-08:00

Hi everyone,

Just wanted to update everyone on my status. I'm doing well breathing-wise. The cold weather still causes my hands to swell and turn blue but I deal with that the best I can. My body aches have returned, however, and the doc said that the reason for that is that the tendons are inflamed around where my joints are, so my wrists, shoulders, elbows, hips, and ankles are stiff and sore. He says that this will get better over time. I try to walk a couple of times every day to keep things moving.

During the first week of April I will go back to Chicago for my 1-year check-up. I will be there a whole week this time so that the doctor can do a right-heart catheterization to check my pulmonary pressures which were running high before. Luckily my insurance fiasco has been cleared up and Kaiser will foot the bill once again for my transportation and housing while I'm in Chicago.

Even though the past year has been tough, I am grateful for the positive changes in my health. Just being free to walk when I want and have energy are huge blessings. I am thankful to have my husband here with us and doing much better. My daughter is doing very well in school and is still waiting to hear from a two more colleges to which she applied. She has already been accepted into her first two choices. Also, she has a big part in the upcoming school play which we are all looking forward to seeing. Now we can truly say that she is The Drama Queen!

Until next time,
Victoria

Drama, drama, drama

2009-02-07T13:32:00.001-08:00

There's never a lack of drama at our house.

My husband went in for a small procedure on Wednesday and had a cardiac arrest while he was in the recovery room! The doctors gave him chest compressions and a shot of Nepiphedrine and he came back. Besides a very sore chest he is doing well and is back among the living. He is still recuperating but his prognosis is good.

What else can happen?!! Don't answer that.

I'm doing well--the stress levels are pretty high so my Raynaud's keeps kicking in, but that's the least of my worries right now. I'm still walking every day and enjoying the ease of breathing again.

Love,
Victoria

E-mail

2009-01-26T15:57:00.000-08:00

As I mentioned in my last update, we were robbed. My laptop was taken and as a result I lost all of my e-mail addresses. I would appreciate it if friends and family would e-mail me at vicknbob@surewest.net so I can add you onto my new computer's address book.

Thanks so much,
Victoria

2009-01-24T14:03:00.001-08:00

As I mentioned in my last update, since I'm feeling so much better I only have the little stuff in life to worry about...Well, yesterday we were robbed! We were gone for an hour and someone broke into the house and robbed us. Now THAT'S something to worry about, huh?

The most ironic thing is that they stole all my jewelry, so this morning I go to the jewelry store to get an itemized list of everything we purchased from them...and guess what? The were robbed TOO!

Sometimes life is just too much.

Other than that, I'm doing swell!

Love,
Victoria

An Update

2009-01-19T09:27:00.001-08:00

Hi Everyone,

I know it's been a while since I've posted...that is because I am doing well and don't have too much to report. I did have a check-up at the rheumatologist last week. The doctor showed me my latest x-ray and it is amazing how normal my lungs look now. You should have seen the look on the doctor's face...truly a Kodak moment. He also took a listen to my lungs and says he can no longer hear the restriction in my right lung; he says my lungs sound crystal clear!

It is such a relief to look forward to going to the doctor...to look forward to the visit because you know your going to get good news. I am so grateful for all the positive changes in my health. Now I can resume worrying about the little things in life.

Yours truly,
Victoria

Good Morning

2009-01-09T08:27:00.000-08:00

Hi Folks!

I just posted some pics from our New Year's Eve get-together at our house. My best friend Lovelle and her husband, Rick, came over as well as Gaby's friend, Tosha. I made a dinner and we played pool and "Rock Band" into the night. I made it to midnight...the first time in about seven years and I toasted with Champagne! I know...amazing, huh? The only reason I share this with you is because I still can't believe I can do all of this and more...thanks to all of you.

Love,
Victoria

It's a Mystery!

2009-01-06T09:30:00.001-08:00

Hi Everyone,

It seems that the whole insurance fiasco has vanished and we will not be cut off as of February 1st. Why? We don't know. As Velma says..."It's a mystery!"

My husband, Bob, e-mailed a Kaiser's Member Services yesterday, inquiring about the status of our insurance and he received a response that the problem was resolved on December 18. ??? It was December 11th when we received the fateful call from CalPERS, telling us that our Kaiser medical coverage would end as of Feb 1st. We've been waiting to hear something, anything, from anybody since then. ???

Bob then asked the rep what the problem actually was and how it was resolved...he got no response. ??? It really is a mystery!! We're not completely convinced everything is really okay yet; however, according to Kaiser, everything is hunky dorey again.

Physically, I'm doing really well. My Raynaud's has flared a little with the cold weather, but it's nothing I can't handle with mittens.

Love,
Victoria

Happy New Year!

2008-12-31T10:29:00.001-08:00

Hey Everybody,

I wish everyone a prosperous and peaceful New Year!

For me, 2008 was a pivotal year. It was a difficult year for me and my family. My husband was diagnosed with kidney and bladder cancers and I endured a difficult stem cell transplant to save my life. Also, my dear grandma passed away at 86 and I am still missing her terribly. I think I always will.

At the same time, the year was a blessing. My husband's cancer was caught in time with radical surgery and my own disease is in remission after the transplant. Friends and family rallied to my side and raised enough funds to cover everything my medical insurance didn't so my transportation and living expenses were completely covered during my transplant. I am truly thankful for the support everyone gave me during my husband's illness and recovery. We are truly blessed.

I am grateful for everyone on my Carepage, on my Myspace page, and in my life, who has supported me during this past year.

Love,
Victoria

Doing well...

2008-12-29T19:35:00.000-08:00

Dear Friends and Family,

Just checking in to let you all know that I'm still doing great. I'm cleaning my house again and doing all of the things I did before I became sick. Never thought I'd get excited about cleaning but there you have it. I'm also walking every day, which makes my dog, Gene, extremely happy.
This weekend I spent Saturday with my daughter shopping, running errands, going to the movies and to lunch. Sunday I went to a movie and dinner with my husband. Life is so much better when you can breathe!

Updates: My friend, Lisa, who had her transplant just after me is recovering from her strokes. She has greatly improved her speaking, writing, and basic motor skills. She is almost off oxygen and getting back to her life as well. John Jager, who had his transplant recently, is doing well despite catching a "bug." Sharon Porter, who also had her transplant recently, has arrived at home and is doing good. So many people are being helped by the stemcell transplant and I'm just as excited about their progress as I am my own.

The medical insurance fiasco has not gone away, but hopefully this week we will hear some news as to where we stand on that matter. I have succeeded in not allowing stress to get to me and make me ill again. Things will be what they will be.

Happy New Years to everyone!

Victoria

Merry Christmas Everyone!

2008-12-24T10:13:00.000-08:00

I know, it's only Christmas Eve, but I'm already excited about tomorrow. I always feel like a kid at Christmas time. Every little thing about this holiday has taken on a deeper meaning for me after my transplant. I'm more grateful for the gifts we receive year-round and not just on Christmas. I'm happy to be here with my husband and daughter and extremely grateful to be alive this holiday.

I want to wish all of my friends, both the friends in my life and the friends on my CarePage, on my Facebook, on my blog and on my Myspace, all of whom take the time to visit me and touch me with their caring kindness and love, and to my family, far and near, a happy holiday season. I am thankful that all of you are in my life.

Lot's of love,
Victoria

2008-12-21T09:41:00.000-08:00

Hi Everyone,

I've decided to let things be what they will be, and instead I want to reflect on and enjoy this holiday season.

Just remembering where I was, healthwise, this time last year really gets me to thinking how fortunate and blessed I am. I've got my life back. A friend reminded me recently that getting my life back is the BEST christmas present I could ever receive. I needed that reminder because I was starting to let the medical insurance fiasco take center place in my mind.

To start off the season I spent the last two fridays making cookies with my best friend, Belinda. The cookies came out fabulous and we had a lot of laughs.

Also, on Friday I had a few friends over for a little christmas get together. I've posted a couple of photos of us girlfriends practicing our "blue steel" look. Yes Mr. DeMille, we are ready for our close-ups...

Have a happy holiday season my friends and family,

Love Vicky

The Latest

2008-12-16T08:27:00.000-08:00

I just wanted to post the latest event in the medical insurance drama that is my life...

Yesterday we received two letters in the mail. The first letter, dated Dec 9, is from Kaiser Permanente welcoming me to the Senior Advantage Program at Kaiser. They stated that I am officially enrolled and have Kaiser medical coverage and I received a new medical insurance card.

The second letter, dated Dec 11, is from CalPERS (the California State Retirees System), and it says they are official disenrolling me and my family from Kaiser because I am no longer eligible!
Unbelievable!!

Michael Moore, where are you when I need you?!!!

Victoria

Ohmmmmmm....

2008-12-15T14:21:00.001-08:00

Hi Everyone,

I'm still trying to stay calm regarding our health insurance fiasco. My husband and I have contacted any and all associations, federal departments and the newspaper in our attempt to figure out what is going on with our medical coverage. We don't believe they can take our coverage away...well, I mean, I saw "Sicko," and I know they CAN get away with this, but I really don't know how they can do so without someone seeing that this situation is just plain wrong. Wrong, wrong, wrong!

My husband is the calming influence in this house right now and I'm trying to follow suit. One thing is for sure...they picked the WRONG people to do this to...if we are anything, we are fighters and we are determined keep our coverage--our lives depend upon it. I only hope we don't get sick again in the process. My Raynaud's phenomena is raging from the stress and my husband is having difficulty sleeping and he is still recovering from cancer surgery.

In a perfect world, I'd wake up and realize that all this has been a dream...er, nightmare.

Thanks for the ear...
Victoria

It never ends!

2008-12-11T15:21:00.000-08:00

You'll never guess what happened to me today...my husband got a call this morning from CALPERS informing him that I am being disenrolled from Kaiser Medical coverage because I have additional medical coverage, TRICARE for Life, through my husband's status as a retired Navy veteran. According to PERS you cannot be enrolled in Medicare (my Kaiser coverage is through Medicare) and Tricare at the same time. My husband then called Tricare and was informed that you cannot be disenrolled from Tricare because it is a veteran's benefit by law.

We are beginning to suspect that Kaiser-CALPERS is trying to disencumber themselves of an expensive medical patient, namely me. I am, of course, very worried because if Kaiser discontinues my coverage, my follow-on care with Northwestern will also be terminated. We have contacted the California Department of Managed Health Care (you will recall that they helped me win my appeal to get Kaiser to pay for my stem cell transplant) and they are looking into the situation but are not sure they can do anything for us because they are prohibited by statute from dealing with Medicare issues. So far The Department of Managed Health Care lawyer has contacted Kaiser and has established that Kaiser knows nothing about any of this! Arrrgh!!

Until today, I was doing fantastically well, but I'm freaking out and the stress is bringing on some of my old symptoms again.

Will this odyssey never end?

Stressed in Sacramento,
Victoria

Wednesday

2008-12-10T09:06:00.000-08:00

Hi everyone,

This past Sunday, I went to a Christmas get-together put on for my scleroderma support group. It is so nice to get together with these people who understand exactly what I've gone through. Each and every one of them is so supportive and positive. The shindig was hosted by Theresa, the leader of our group. She graciously opened her home to us and made us all feel welcome. Thanks Theresa!!

Whenever I leave one of our meetings, I feel like I am not alone in my sclero-drama and that there are other players surrounding me with the love and strength I need. If I can do the same for any of them, then I have completely come full circle.

I also thought it was important that I take my daughter to the party, so she can see other women with scleroderma, strong women who have found eachother out and lean on one another for support. I also wanted her to see these women in such a positive atmosphere. Sick people, who don't act sick, who are getting together and celebrating life.

Thank you my sclero-sisters,
Victoria

Doing well...

2008-12-01T08:48:00.000-08:00

Good Morning Everybody,

Usually if I'm doing well and there's no sclero-drama going on, I don't feel the need to post an update on these pages, but I thought to myself, "Why not let everyone know you're doing well?"...

So, I'm doing well! I still have a cough but it's getting much better and I'm sleeping better as a result. I still have my sexy voice but no one in this house seems to appreciate it but me. Oh, well.
Yesterday, I was thinking to myself about how far I've come in just one year. In the past week, I have shopped for Thanksgiving dinner, cooked Thanksgiving dinner with all the fixings, cleared out all of the Thanksgiving decorations, decorated the house for Christmas, completed all of my christmas shopping (on-line), painted about six or seven new pots, and generally kept very busy. Compared to last year, when I was basically couch-bound, on oxygen, and on more medications than I could count, I think I'm doing pretty darn well indeed!

Yours truly,
Victoria

Happy Thanksgiving

2008-11-26T13:40:00.000-08:00

Happy Thanksgiving everyone,

I have so much to be thankful for this year. Being here is probably the biggest blessing of all. Being able to celebrate this holiday with my family, especially my husband who recently survived cancer, means so much this year. Although my gathering will be small, it will be the most significant Thanksgiving I've ever celebrated.

Because life is a series of dualities, this is also going to be a sad holiday because it is the first Thanksgiving that my grandmother will not celebrate. I will miss her but I'm grateful for all of the wonderful years I had with her. There is also a melancholy feeling this year because it will be the last Thanksgiving that my daughter will be living at home. Next year she'll be off to college. Of course she'll come home for the holidays (I hope) or at least to do her laundry.

Most of all, I am thankful for all my family and friends who made it possible for me to enjoy this Thanksgiving's meal by making my transplant and life possible.

Gratefully yours,
Victoria

More Objects de Art

2008-11-21T09:23:00.000-08:00

Hi Everyone, I thought I'd post some more of my work. Enjoy! Victoria

A Visit to the Dr.

2008-11-20T19:15:00.001-08:00

I finally got to see the doctor today and wouldn't you know it, I'm feeling better today. Isn't that the way it always works out? The pulmonologist agrees that I have bronchitis and my immune system is doing its best to fight off the "ick." I'm glad I checked in with him though, even if there isn't a thing he can do for me that hasn't already been done. Only time can heal me now. Like I said, I do feel better today, so let's hope the trend continues.

On a positive note, the incessant coughing has left me with a sexy, gravelly, Loren Bacall voice. There is ALWAYS a silver lining.

Thanks everyone for your well wishes and God Bless the Ricola.

Victoria

I'm a Hacker!

2008-11-18T20:31:00.001-08:00

After a very short reprieve, I'm hacking (such a descriptive word) again and my chest and throat are again congested. Today the doctor sent me to have another chest x-ray. I have an appointment to see him on Thursday. Unfortunately, that's the soonest he is available to see me. If I could just get rid of this cough completely, I know I'd feel 100 percent better. I'm not sure there is anything else they can do for me right now, since I'm not running a temperature. We'll see on Thursday.

Pass the Ricola,
Victoria

My hobby has gone to pot!

2008-11-17T15:57:00.000-08:00

Hi everyone,

Some of you expressed a desire to see the pots I've been painting. I do some statuary as well. Here are some pics of my latest pieces. It's my hobby.

On the mend...

2008-11-16T08:58:00.000-08:00

Today is the best day I've had so far while I've had this bronchitis. I've got some energy and I'm not coughing up a lung anymore. This bodes very well for Thanksgiving. I'm going to cook Thanksgiving dinner at my house! Can you believe it. I haven't been able to cook for five years and now I'm taking on "The Turkey." I want so much to do this, because I can! It's just going to be us, Bob, Gaby, and me, so there isn't too much stress involved. This is going to be a practice run for, let say, when we have guests some day.

I've been doing some painting and pretty soon I'll post some photos. I have also resumed my walking in the morning. Slowly, but steadily, I am getting back to my normal self which I no longer consider "normal," rather it's a pretty amazing self (all modesty aside)! I'm taking nothing for granted any longer. It is a blessing to be here right now.

Thank you everyone who helped make my new life possible and who prayed for me and held my hand throughout. You have all earned your Karmic star in heaven.

Gratefully yours,
Victoria

Getting Better...

2008-11-12T09:53:00.000-08:00

Hi Folks,

I'm finally getting better and I can now see the end of the bronchitis tunnel. Also, our home phone was repaired this morning so, we're up and connected once again. I feel like I have reentered the human race, in more ways than one.

Woo hoo!

Victoria

Finally!

2008-11-11T10:00:00.001-08:00

Finally, I've got a diagnosis...Bronchitis.

The doctor said I have a viral bronchitis and prescribed a steroidal bronchial inhaler. Unfortunately after waiting at the pharmacy for my name to come up, the clerk told me that they didn't have the inhalers and would have to order one for me. Oy vey! So, based on many of your suggestions, I bought some Mucinex to use in the meantime. Wow, that stuff works pretty good! I am feeling better and I slept better last night. Thanks again for the good advice.

Other than my cough, I'm doing very well. I've started to paint again and have several pots finished and drying. Being able to do the things I love is a measure of success for sure.

I'm grateful for another beautiful day.

Victoria

Sundayt

2008-11-09T09:49:00.000-08:00

Hi Everyone,

I continue to have a terribly persistent cough and it is beginning to wear on my spirit. Tomorrow I have a previously scheduled appointment to see my rheumatologist, so maybe he can shed some new light on my symptoms.

The coughing is keeping me awake at night so I'm starting to look like a zombie. You know, I've got that red-dark circled-glassy eyed-haven't-slept-in-three-days look. They gave me some codeine-laced cough syrup, but I can't see that it's doing any good. Beside that, it tastes like paint thinner (er, what I imagine paint thinner to taste like), and I'm having a hard time stomaching it.

I am trying to keep my spirits up. This too shall pass and all that.

Patiently waiting,
Victoria

P.S. I don't know if any of you have tried to call me, but we found out day before yesterday that our telephone is out of order. Apparently if you call me, it just rings and rings. Someone is coming out to fix it on Wednesday, so, hopefully, this TOO shall pass.

Ugghhh!

2008-11-07T08:23:00.000-08:00

Well, I have successfully passed on the crud to my daughter. She received another college acceptance letter in the mail yesterday, and when she came home, she didn't even want to open the letter...that's how bad she feeling. She cursed me up and down for making her sick, but not before she "let me" make her soup and a bed on the couch. Kids nowadays...

So Gaby was accepted to my alma mater, California State University, Sacramento. Sac State also happens to be where my husband taught for 42 years. Gaby kinda grew up at Sac State. I was a student there through my pregnancy up to when she was two years old (I used to bring here to class in a stroller), and over the years, she spent many hours coloring in the back row of my husband's classes.

Anyway, I hope my cough gets better soon, or I really will cough up a lung--not a pretty sight for sure. I have been running a mild temp but the doctor doesn't want to see me unless my temp gets up to 102. So, here I linger in hacking hell. (Dramatic, no?)

Still, life is good and I'm not complaining (me? complain? pshaw!).

Always,
Victoria

Dr. Visit

2008-11-03T20:52:00.000-08:00

Well I finally got to a doctor today. I spent half the day at Kaiser getting chest x-rays, seeing the doctor, getting labs done and picking up prescriptions. Turns out I don't have a bacterial pneumonia, however, they are not ruling out a viral infection. They gave me cough medicine with codeine and told me to track my fevers. One great thing came from the x-rays--the fibrosis in my lungs is much improved. It is not gone but the recent picture is much clearer than the x-ray done in April.

I'm very grateful for the cough medicine. A few times there I thought I might actually cough up a lung...That's the sort of thing my dad would have said and the image that comes to mind never ceases to gross me out (every time). The cough medicine is helping to tame the beast within my throat.

I did manage to have a minor setback after giving blood. The lab was noisy and busy and the technician had a little trouble locating a vein in my arm. Right after she stuck me, my chest began to hurt. As soon as she pulled the needle out I realized that I was having a raynaud's attack in my pulmonary artery. What's worse is that I didn't have my nitroglycerin tablets with me. Luckily we live a block and a half from the hospital. Bob rushed me home and got four tabs into me quick. The attack finally subsided after about 1/2 hour.

The lesson for the day is that I am ONLY six months post-transplant and I have become lax about the precautions I'm supposed to be taking. LESSON LEARNED--I'm not going anywhere without those tablets and I am going back to compulsive hand-washing.

Sometimes, you just have to learn the lesson the hard way,

Love, Victoria

Dia de Los Muertos

2008-11-02T10:55:00.000-08:00

Happy Dia de Los Muertos!

Speaking of "los Muertos," today is the day I honor and remember all my loved ones who've passed--my first husband, my dad, my aunt, and my grandmother--each of whom attributed to shaping me into the woman I am today.

This morning I broke down and called Kaiser. I have an appointment first thing in the morning. Since it's been a week and I'm still coughing up a storm, I realize I better get checked out. I'm pretty sure I may just have a chest cold, because I haven't broke a fever, but I suppose I just can't be too safe under the circumstances.

The rains are finally here and the trees have turned. I love this time of year, more now that I don't have to deal with severe Raynaud's symptoms due to the cold. This is the season to sit by the fire and reflect.

Today, I am gratful for the beautiful colors of Fall.

Love,
Victoria

Birthday Cake

2008-10-30T14:03:00.000-07:00

Not so good morning everyone,

I'm not feeling so hot today. I think I caught some sort of bug at the market on Sunday, because I woke up Monday with a cough, a sore throat, and phlegm (you know, those little purple guys you see on that television commercial) filling up my lungs. I'm hoping it's just a chest cold and nothing more. Yesterday was the first day I admitted to myself that I was probably sick. You know how you tell yourself, "It's just allergies."

Yesterday, I e-mailed my rheumy and he didn't seem too concerned...he said if I continued to feel sick that maybe I should see my primary care doctor. I tried to schedule an appointment with my primary care doctor and he is unavailable until November 13. Cest la vie! Luckily I don't having any pressing engagements, so I'll just suffer (which I don't do particularly well).
I wanted to thank everyone...Carey, Donna, Carolyn, Lois and Michelle...for their best wishes for Gaby. My good news was comingled with not-so-good news...

On Friday night, Gaby sent me the text message no parent wants to get...she had been in an car accident! Before everyone panics...she hit a parked car a block away from home. She was coming home from a birthday party with the remainder of the birthday cake on the front seat of the car. She turned the corner onto our street and the cake fell on the floor. She bent over to pick the cake up, and well, you can see where this is going. Bob and I did not punish her, because what she did next made us very proud...Upset and crying, she pulled over and knocked on the door of the house where the car was and told them what she'd done and gave exchanged information and apologized profusely. The woman who answered the door said all she wanted to do was hug Gaby because she was so remorseful and honest. In a way, I'm glad she had this type of accident and that she had it now, early in her driving history. I believe that she has learned an important (and expensive) lesson about what can happen when you take your eyes off the road.

Last night, the owner of the hit car came by to give us an estimate of the damage. He was extremely gracious about everything and showed us several estimates he had obtained. He insisted that we agree on the lowest estimate. Then he said that he was completely blown away by our daughter's honesty and how proud we should be--we are, but man was that the most expensive birthday cake we've ever had!

Grateful for life's LITTLE lessons,
Victoria

Good News!

2008-10-28T07:12:00.000-07:00

Good Morning Everyone!

I have some good news to share today. My daughter, Gabrielle, was accepted to San Francisco State University as a Japanese Major! San Francisco was her first choice, so she is pretty jazzed as are Bob and I. I don't think I've seen her bounce off the walls this much since she was 10 and nearly od'd on Mountain Dew.

Gaby has applied to other schools so her choice is not definitive yet, but it would be nice to have her close to home (yet far enough away that she can be "on her own.") It's almost time to cut those apron strings, but I'm okay with that. You see, just having the opportunity to do that, like every other mother whose child has gone off to college, is a blessing.

What is really significant about this milestone is that a year ago Bob and I set a goal--to stay alive until we got Gaby into college and on her way in life. Today I feel as though I will be here after she graduates and beyond! I'm so grateful for the time...time is everything to me now--having more of it.

I'm glad I'm a mom,
Victoria

Good Morning

2008-10-27T09:09:00.001-07:00

It's Monday again and that means "No Labs!" Who would have thought that I would come to love Mondays so much? Ironic?

On Saturday, I went to my scleroderma support group meeting, and it was great to see so many ladies there. We have some new people and that is always a good thing. You can see the relief in their faces when they listen to others talk about what they themselves have gone through sometimes all alone and in silence. I really want to be of help to those who come to our group either by sharing my experience or by listening to theirs. I have nothing but positive things to say about my transplant, and I hope that anyone in the group who is interested and eligible will take advantage of such a medical miracle.

Today I am feeling well. I am full of energy and positivity. I wish the same for all of you out there who are suffering from scleroderma or any other debilitating disease. It's a tough road but I think that if you can remain positive and hopeful, only then will you can you start to regain control over your life and your happiness.

Be strong my friends.

Love,
Victoria

Monday, Monday...

2008-10-23T08:24:00.000-07:00

Hi folks,

It's Monday and that does NOT mean labs any longer. The folks in Chicago told me they don't need labs any longer and the hematologist here at Kaiser also said she doesn't need weekly labs either. I think I just have to get a monthly lab for my rheumatologist...yaaay! You have no idea how I had come to really dread "the poke" on Mondays.

All of my tests which I took in Chicago came back unchanged or normal. My blood work was normal, my chest CT scan was unchanged and my pulmonary function test was unchanged. Great news!!!

So now I'm left with monthly labs and I only have to give myself the Procrit shots every other week. Maybe now I can get rid of some of the unsightly bruises on my arms and tummy.
While I was able to get off one medication (Fluconazole) as a result of my check-up, I had to start two new medications. A dieuretic and an aspirin a day to treat the continued swelling in my arms and legs. The swelling was becoming debilitating, causing pain when I walked, otherwise I would not have started any more meds. My goal is to get off as many meds as I can over the course of my recuperation. To quote Danny Bonaduce, "I take so many pills, I get full!"
Anyway, today I am grateful that I am here for another Monday.

Love,
Victoria

(P.S.) I know it's not Monday, but I wrote this and forgot to post it to my blog (chemo brain).

Dear Donna...

2008-10-19T11:05:00.000-07:00

I recently received the following message on my CarePage from Donna Lavalleur, and I wanted to take a minute and respond...

"Hi Victoria,I read your blog regularly and you are an inspiration to me! I was recenly diagnosed w/diffuse scleroderma + pulminary fibrosis. I met with Dr. Daniel Furst @UCLA last Monday. He wants to work w/my docotor @ Kaiser on my treatment. Do you have any words of wisdom or suggestions as far as me getting my tests done at UCLA and having Kaiser cover them? I know you went through a very tough battle w/Kaiser, but if I remeber correctly, you "won", right? Anyway...congratulations! And you are a miracle!!!!"

Hi Donna...

First of all, I am sorry to hear that you've been diagnosed with scleroderma and pulmonary fibrosis; however, I'm glad you posted on my page, because I can definitely help you.
You said that you met with Dr. Furst at UCLA. I also went to UCLA; I, however, met with Dr. Clements, who is Dr. Furst's colleague. Dr. Clements worked with my doctor at Kaiser, but I had to pay Dr. Clements fee each time I saw him. Kaiser will not pay for tests done at UCLA; however, they will probably let you take tests at Kaiser and then your doctor can send them to Dr Furst. The reason Kaiser will not pay for tests is because they can have rheumatologists and the same tests available at most Kaiser facilities. What I fought Kaiser for was to get a stem cell transplant without radiation...and they could not offer me that procedure, and without it my prognosis was grim, so I won my case. Getting a second opinion from Dr. Furst can't hurt, but you will have to pay for his opinion out of your own pocket.

You essentially have two choices...you can have your symptoms treated (and continue to deteriorate slowly or maybe go into brief remissions) or you can get a stem cell transplant and put your disease into remission for good. You will probably not be eligible for the stem cell study at UCLA, because they use radiation. You cannot have radiation if you have pulmonary fibrosis. Plus, I was told that they only accept end-stage patients. If you would like to find out if you are eligible for the stem cell transplant I had at Northwestern Medical Center in Chicago, I suggest you e-mail Kristin M. Boyce, RN, at kboyce@nmff.orge. She is Dr. Burt's Nurse Clinician. Dr. Burt's stem cell transplant study (known as the ASSIST Trials) accepts patients within the first six years of diagnoses because the theory is that if you catch the fibrosis early, you can put it in remission.

Please e-mail me if you would like me to help you further or if you just want to talk...you can get me at vicknbob@surewest.net.

Sincerely,
Victoria

Chicago, October 2008

2008-10-17T12:33:00.000-07:00

Check-up in Chicago

2008-10-17T11:52:00.001-07:00

Hey everyone,

I just got back from Chicago last night. My check-up with Dr. Burt at Northwestern Hospital just reaffirmed the obvious--I'm a miracle!! Dr. Testori said my lungs sound like a healthy person's lungs. Everyone agreed that I look like a different person. Well, I am a different person. I don't see myself as a "sick person" anymore. I feel as though I've got my whole life ahead of me now. I was able to walk quite a bit in Chicago without pain or difficulty. Can I get a woo hoo here?

The nurse coordinator asked if she could have people call me regarding the transplant, and I said of course. I would be honored to be able to help someone else through the transplant process. It is time to pay it forward.

Many thanks to all of you who prayed for me and wished me well. I'm so grateful to everyone who gave to my transplant fund. Without each and everyone of you, I would most certainly not be here writing to you today.

All my love.
Victoria

Today...

2008-10-12T20:01:00.000-07:00

Today I found out that Michelle Mayer, the first person that I met who also suffered from scleroderma, passed away yesterday. She died due to her scleroderma. She gave me hope and guided me through the myriad of possible treatments. Today I am so sad.

Michelle wrote a blog about her experience--about living, parenting, and dying. There is talk of publishing her words. You can read what Michelle chose to share with us about coming to terms with disease and death. Type the following in your browser:

http://diaryofadyingmom.blogspot.com/

Because of women like Michelle, I and others with scleroderma are still alive. She gave me knowledge and support to help myself. My heart goes out to her husband and children. Please, please pray for them.

Victoria

Thursday

2008-10-09T16:53:00.000-07:00

I went to see the oncologist/hematologist today and she said my counts have come down slightly, but she expected as much since we are tapering down on the Procrit injections. The GOOD news is I don't have to give myself an injection today. She is now putting me on 1/2 dose of Procrit every other week. Also, she has said it's okay to start doing blook labs every two weeks rather than every week. Yaaaaaay!!! Can you hear that?...That's the sound of me jumping for joy.

Soon, our friends, Dick and Kathy, will be stopping by on their way back up to Portland. It will be nice to see them again. We're sending Gaby out for Chinese food. This whole teenage driving thing is actually kinda growin' on me. It does come in handy at times.

I hope everyone else on these carepages can find friends to spend time with on this beautiful fall day.

Hugs,
Victoria

Monday...

2008-10-06T11:57:00.000-07:00

It's Monday, which is "Lab Day" for me. Hopefully my red blood cell and hemoglobin counts will still be normal so I can taper the Procrit shots to one-half dose every other week. That's two-less sticks per month...woo hoo! It's the little things, you know?

Five years ago, shortly after I was diagnosed, my sister-in-law told me she had a friend, a nurse, who also had Scleroderma and who would be happy to talk to me about the disease. What a relief it was to be able to talk to someone else with Scleroderma. At the time, I didn't know anything about my disease and I was scared.

The woman's name is Michelle, and I will be forever grateful to her for giving me hope and convincing me that I could fight this disease. She spent over an hour on the phone with me detailing exactly what I should do, what kind of doctor I should find, and what medications I should be on. She explained that I had to be my own advocate and I had to remain positive. We spoke a couple of time after that.

A few days ago I found out from my sister-in-law that Michelle is in hospice care and she is failing. I am very sad for Michelle and her family. She is married and has very young children. Scleroderma is a terrible disease. Please pray for Michelle and her family.

Gratefully Yours,
Victoria

My Girl

2008-10-03T14:27:00.000-07:00

My daughter, Gabrielle...the reason for everything.

Thank God it's Friday!

2008-10-03T11:46:00.001-07:00

Hi everyone,

Just wanted to let everyone know that I'm still doing well, physically speaking, and I continue to walk every morning to keep my body flexible and my lungs functional. My lungs just seem to get better and better--no pain, no breathlessness! Moving is the answer to the body aches and stiffness. It is manageable.

Mentally speaking, I'm still trying to get on the right dose of medication to control symtoms of mania and anxiety attacks (the result of stopping my anti-seizure medication a month ago). I deal with this one day at a time, sometimes one hour at a time, if you know what I mean. If it's not one thing, it's another. I continue to try and find the balance.

I do have some great news on this Friday...I got an e-mail from my transplant twin, Lisa, and she's doing very well...FINALLY! She has updated her blog and included some pictures. If you are interested in reading more about her update you can go to her blog:

http://hopeandheart.org/

Or you can Go to her story by clicking on "Lisa Volz' Story" on my blog:

http://www.victoriasmiracle.blogspot.com/

Today I am grateful for Lisa's recovery and I am looking forward to continued healing.

Hopefully Yours,
Victoria

I'm still here

2008-09-24T10:06:00.001-07:00

Just wanted to let everyone know that I'm still here. I've been having some medication issues and am trying to get them sorted out. The good news is that my lungs are still doing very good. Also, my blood counts are good so I'm to continue tapering off the Procrit injections until I'm off of them for good.

In a few weeks my daughter and I will head to Chicago for my first follow-up examination. I will have a full day of testing and then a visit with the transplant team. I feel very positive about my progress despite the medication setbacks.

Till next time,
Victoria

Monday...

2008-09-15T10:25:00.001-07:00

Monday is here again and that means going to the hospital to do labs. The hematologist will be checking my red blood cell and hemoglobin counts. Now that I have cut my Procrit dose in half, we will see if I continue to keep producing red blood cells on my own.

Despite having to be needle-poked today, it is going to be such a nice day. The weather is perfect for sitting outside and reading or just watching the finches and squirrels come to drink water from our waterfall.After Bob and I take our daily walk, I have to just sit for a while and wait for the aches to subside, so it is great when the weather is nice enought to sit outside.

I've been getting e-mails and calls from other people with scleroderma who read my story in the Scleroderma Foundation newsletter. When they tell me their stories it's like dejavu for me. I am reminded of the fear and uncertainty I experienced when I was first diagnosed. Fear of the unknown is the worst thing we all face having this disease. Being told that my life expectancy without treatment was three to five years was actually a relief because then I had a tangible focus and could put a plan in action toward remission. So, being able to give other information is something I am very happy to do.

Always,
Victoria

Monday...

2008-09-15T10:25:00.000-07:00

Life

2008-09-11T13:53:00.000-07:00

Hi Everyone,

I've finally heard from the transplant team at Northwestern Hospital in Chicago...I'll be going back for my six-month check-up on October 15. I'll fly into Chicago in the evening, have a full day of tests and doctor visits the next day, then fly out the following morning. It's going to be a challenge, but I think I can handle it. My daughter is going with me as my caretaker and my husband will stay home and watch the fort. This is the first time in years that I've travelled without supplemental oxygen! It will be a test of endurance.

While I am still off oxygen and doing well without it, my body has begun to hurt again. I'm dealing with it, but I have to admit that I'm a little discouraged. I was feeling so well after the stem cell transplant that my doctor and I began to taper me off some scleroderma meds. One of the meds, Nortryptaline, I took in small doses for chronic pain. It was also the first med I stopped taking. I think I may have to get back on it, and I feel as if I've taken a giant step backward. To keep from getting down, I try to remind myself that I've made great strides toward recovery: I'm off oxygen, Prednisone, Cellcept, Tegretol, and I'm down to a minimum dose of Procardia. I'm still on eight medications and Procrit injections; however, I believe I will be able to get off of these medications sometime in the future.

This week I saw the hematologist who has begun to taper me off the Procrit. I will take half a dose for four weeks and then half a dose every other week. I will have to get weekly blood tests to see if I am producing red blood cells on my own, without the Procrit, as I taper down. My lungs still sound clear and feel good, which is really the most important issue.

Through it all, life goes on...my daughter is getting ready to apply to colleges and leave the nest, my step daughter has gone back to Iraq after a short visit, I recently learned that my sister-in-law has breast cancer, and I continue to hope and pray that my husband will remains cancer-free.

This is life.

Always,
Victoria

2008-09-05T09:34:00.000-07:00

I've told you all about my friend Lisa, who had her transplant five days after I had mine. I received an update from her mom a couple of days ago...

Lisa is making a lot of progress after being home for one month. She is going to have some of her toes amputated because of complications from vasculitis after the transplant. She just had many tests done and saw a three doctors and a specialist, the vascular doctor, The pulmonary doctor and the infectious disease doctor are deciding how to handle the surgery on her toes. She had CAT scans, MRI's and blood tests, etc...

So, they will be amputating the tips of her toes, two on one side and three on the other. She is getting around and walking pretty good. She has had special shoes made for her feet. She is walking every night around 9 at night. She is learning all over again, her writing skills are improving and becoming more smooth. S he signs her paperwork with and X. It is hard for her to listen to a lot of talking so she would rather like it to be quiet. Lisa's mom thinks she will be more sociable when she has her confidence back. She has alot of humor in all this. Her excuse for everything that is difficult is 'I'm in a coma' So she pretends by closing her eyes and then laughs. She has occasional melt downs but tries to keep things together with humor. She can be very funny and everyone can see the old Lisa when this happens. She's lost alot of weight so she looks like Lisa and her hair is growing back really thick. Lisa's mom said she could see improvements even in the short time she was there this time. Lisa's mom also wanted to " THANK YOU FOR ALL YOUR SUPPORT AND PRAYERS!!! LOVE SHIRLEY"

Progress

2008-08-30T09:29:00.000-07:00

Good Morning!

I am finally making some progress in getting off some of my medication. I am down to 50 mg of the antiseizure medication and I am completely off Nortryptaline, which I was prescribed for joint pain. I still have stiff and painful joints on occasion but the doctor told me that was probably from the Procrit injections. Procrit stimulates your bone marrow, often causing joint pain in the long bones of the body. So, I'm not entirely pain free yet, but I know it's only a matter of time.

Yesterday I saw my pulmonologist who went over my pulmonary function test with me. He was happy to report that there is essentially no change from the last test I took just before my transplant. Stability, he explained, is all we can hope for and that's what we've got. The test indicates there is no further scarring in my lungs!

This week I had the opportunity to help another couple who are also trying to get the stem cell transplant. My mentor, Jane Erickson, referred the John and Brenda Jager to me. John Jager is the patient and he is basically in the same situation I was in...denied by insurance and getting worse by the day. I advised Brenda Jager on how to appeal the denial and shared with her the articles I sent to my appeal board and my experience with the transplant. I received a message yesterday that their insurance company has overturned the denial and will now pay for Mr. Jager's transplant. I don't know if anything I said, specifically, helped them get their decision overturned, but I was glad that I could be there for them during an uncertain and scary time.

Every day I become more certain that everything is going to be okay.

Love,
Victoria

All is Fair...

2008-08-24T12:19:00.001-07:00

Hey everyone!

Thank you so much for your messages of encouragement. I am still doing well and am even managing to reduce the dosages of some of my medications. I'm still off supplemental oxygen and exercising every day. On Friday, I had a pulmonary function test which indicated that my pulmonary function has essentially unchanged since my last test (pre-transplant), which is good news. Of course, the pulmonologist has not reviewed the report yet, so the findings are not "official."

I believe the true test of how I'm doing is in what I can do...are you sitting down? Yesterday, I took my daughter to the state fair!! We spent the whole day looking at exhibits, seeing the shows and eating "naughty" foods. Of course, I paced myself and took advantage of the shows and demonstrations, where I could sit for an hour or so and relax. But I felt so good, especially since going to the fair has been a tradition for me and my daughter since she was a little girl, yet for the past several years we hadn't been able to go because I was sick. Year after year, I promised her that when I felt better we would go again. This year, I'm so happy that I could keep my promise.

Today, I'm a little sore, but spending the day at the fair with my daughter was so worth it. To have days like yesterday is the reason I had the transplant in the first place. I am grateful for each and every day.

Love to all,
Victoria

No News is Good News

2008-08-18T18:19:00.001-07:00

Hi everyone,

I haven't got much news for you other than I'm still doing well without oxygen and I'm still on the Procrit shots. I'm in a holding pattern regarding the medications for now. Most days I feel pretty good. I take a leisurely walk around our neighborhood in the mornings, after which I'm pretty tired...but, no problems breathing!

Our daughter just got her driver's license, and she is more than happy to run errands for us. She is a huge help to me and her father. Of course, I came to this conclusion only AFTER biting off all my fingernails and pulling out my hair, consumed by anxiety and worry that my little girl was out there on the big bad roads. I got over it quickly.

Till next time,
Victoria

Good News

2008-08-13T19:23:00.000-07:00

Hi Everybody,

Today I had a great visit with my rheumatologist. He says my all of my blood counts are great as are the results of all my scleroderma tests. He said my lungs sounded really good too--no sounds, actually! We made a plan to start weaning off a couple of my scleroderma medications, which we both feel I no longer need. We are going to put off lowering the antiseizure med for a couple of weeks, until my recent symptoms are resolved.

It turns out that one of the properties of the antiseizure medication is that when you start taking it or stop taking it, it can affect the breakdown of other medications in your system. After doing some research, the rheumatologist, hematologist and pharmacist think either of two medications I'm on may be at a toxic level because I've reduced the dosage of the antiseizure med. So, we are going to reduce medications one by one to find out why I'm feeling sick in the mornings. Along with those medication reductions may come additional side effects, and I also have to continue the procrit shots (which are now causing bone pain in my arms and hips), so I have a sinking suspicion that the next month or so is NOT going to be hunkey dorey. Bummer!

On the positive side, my rheumy said that he is going to present my case to the National Rheumatological Society tonight. He said that he's going to discuss the stem cell transplant as a viable alternative treatment for some patients with scleroderma using my experience as his model. Also, he reassured me that they would not make me rush off of the antiseizure medication too soon. I feel very positive that I can handle all these changes. While the going might get rough, I know I have a team of people who are there to deal with whatever comes up.

All in all, the news today was very good.

Later,
Victoria

Another Week

2008-08-11T20:03:00.000-07:00

Last week was great as I had predicted it would be; however, during the weekend, I began waking up feeling nauseous, achy, and a little short of breath. I'm reminded that Dr. Burt said I might still have many "bad days" left in my recovery, so I'm chalking all my symptoms up to just that--a few steps back. I still manage to walk 30 minutes every day and putter around the house. I rest often.

I started off this week by going to the lab this morning to get my blood levels taken and to get the rest of my labs for sclerderma done. Only one poke! Tomorrow, I will be seeing the hematologist regarding my blood levels, anemia, and whatever else comes up. I think I'm going to be in trouble with her. I still have been unable to decrease my antiseizure meds lower than 200 mg. If I do not go off this medication, I will have to have blood transfusions every time my levels drop. If I do go off this medication, I suffer from nausea, diarrhea and crippling anxiety. What's a girl to do?

I say let's wish for a miracle--that my anemia spontaneously resolves itself and my bone marrow blossoms and everything turns out hunkey dorey. It could happen.

Wishing and hopeful,
Victoria

A Good Week

2008-08-06T11:25:00.000-07:00

This week started out well...

I went to the lab on Monday to get my labs done, and the tech only had to stick me once!

Yesterday, I received a call from the hematologist who said my red blood cell counts had come down and looked good. She instructed me to stay on the Procrit shots once a week, though, until further notice.

The best news is that I've got no doctor appointments this week!

So, I'm left with more time for pond therapy, crossword puzzle therapy, book-so-good-you-can-put-it down therapy, and Haagen Daz chocolate chocolate chip ice cream therapy.

It's going to be a good week.

Love, Victoria

Pond Therapy

2008-08-03T09:45:00.000-07:00

This weekend, I am spending time outside by the pond, listening to the water and getting centered. Tapering off my antiseizure medication has proven more difficult than I'd predicted. I'm having some withdrawal symptoms, so I haven't been feeling well the last couple of days. I've been taking this medication for about 15 years. I have so far tapered down from 600 mg to 200 mg, but when I tried to go down to 150 mg, I began having problems. My transplant doctor is pretty adamant about me stopping this drug as is the hematologist here in Sacramento. They both believe that the medication has caused the aplastic anemia that I am experiencing.

So, I am trying pond therapy to get me through the day. Listening to the water and watching the fish swim around really does have a calming effect on me; however, I do think I need to stay at a 200 mg dose for awhile.

While reading the Sacramento Bee newspaper this morning, I was suprised to see a blurb about me in the Health & Fitness section. The column addresses the how the Department of Managed Health Care can help patients get the treatment they need as they did for me. I was happy to see the article--the folks at the DMHC saved my life!

2008-07-31T20:31:00.000-07:00

Thank you everybody for all your well wishes. It's nice to be able to share good news on these pages.

I have more good news...Many of you have requested an update on Lisa, another transplant patient whom I befriended in Chicago. I received a message from Lisa's mom, Shirley, which said that Lisa flew home yesterday from Chicago and is home with her husband today. She will be continuing her rehab in Arizona. After her transplant, Lisa suffered several strokes, and for the past several months she's has had to learn how to speak, walk, sit, and eat again. Today, she can walk from the car to her apartment without help and her oxygen level is down to 2, which is really great. Today she is going out for Chinese food with her husband, Joey, and her best friend, Sara!

Life is full of miracles, isn't it?

Till next time, Victoria