Year 4

Hi Everybody!

I have not written on this blog for some time now...I was busy living. To catch you up, I've had kind of a rough start to the new year. A couple of relapses in lung function and pain flares got my attention in February and March. I just got back from my 4-year check-up in Chicago and the news was not good. My pulmonary function has relapsed to where it was in 2009, I now have a small effusion (fluid) around my heart, and they found a nodule on my lung which they suspect could be malignant as it has grown significantly since last year. (I didn't even know I had a nodule last year) Apparently it is 11 mm right now. I am told that sometimes Scleroderma will cause these nodules which usually are benign. I will see the pulmonologist on Thursday, April 19th and he will do a PETSCAN and then probably a biopsy; however the waiting is driving me crazy. Gaby is in Japan doing her junior year abroad. I really miss her and will be happy when she comes back to San Francisco in August to finish up at San Francisco State. Sometimes I just need my baby close to home. Bob and I are doing alright and taking it easy. I don't know what I'd do without him, he makes life a lot easier for me. I am still leading a support group for the Scleroderma Foundation and I find it very rewarding. I am learning a lot about this disease and meeting very interesting people. I am also taking a German class at the local community college to keep me busy. So the wait begins...till Thursday. Argh!

Yosemite Camping Trip!

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

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!

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

“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

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

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