A love letter to my friends

Hello, I've been gone for awhile. I've been working hard to get better and regain the strength I lost being so sick. It turned out I contracted a virulent virus and it kicked my immune system in the behind. Thanks for all your prayers, cards and calls. The saying is true: the little things mean a lot. I am crawling out and gaining strength each day. And....I have the best husband on earth! He is my best friend and my rock. We are still madly in love and are approaching our 30th anniversary. I appreciate him so much and am so glad God brought him to me. He's one in a million.

Another blogger I follow posted a wonderful blog entitled "A love letter to my friends." I hope you'll take some time to head over there and read this blog entry. It says it all. Thanks Shari!
http://notesfromthecouch.com/2011/10/19/love-letter-to-my-friends/

Not getting better

My spouse took vacation this week - it's peak season for fall colors and we wanted to see them. We spent 4 days up north but I was very ill and not getting better, so we returned (the colors WERE spectacular!). My doctor is working on getting me evaluated at the University of Michigan Medical Center, which first must be approved by my insurance. Once approved, I will go there for a thorough evaluation and see if something is being missed or perhaps I am ready to get on the transplant list.

I cannot tell you how sick I am. Worse than on chemo. So, I'm sorry I haven't been responsive to your cards or emails. I get tired just from talking.

I will keep you posted.

The decline....

I've been hoping that this current struggle has been a virus, menopause, or a combination of the two but I can't seem to shake it. This past weekend was my nephew's wedding; he is very special to me and I did not want to miss out! I rested and rested in preparation and when the day came and my ENTIRE family was here, I was able to go....but not without more medications than usual. The reception was held under an outdoor tent and it was quite cool; within a couple of hours, I was chilled to the bone. I didn't think the additional stress on my body was good, so I chose to come home and rest while everyone else stayed and enjoyed the festivities. Instead of feeling badly, I was truly grateful I got to go and experience as much as I did.

But I am not getting better by any stretch of the imagination. My wonderful spouse took the day off and went to the doctor with me to get some answers this morning. While I don't have them all, I now know this is NOT a temporary change in condition that will get better. My liver is showing signs of more disease (development of ascites to be specific) and my symptoms fall into the category of disease progression. The doctor increased my pain medication and is sending me to a specialist who will most likely do a liver biopsy and see how much closer I am to needing a transplant.

The weekend was bittersweet; realizing it's unlikely I will live to see my kids marry and that my husband will grow old without me are very difficult realities. I still find myself asking, "is this really happening?" as it seems so surreal. There is no doubt I have a difficult path ahead and it's not likely to ever get easier. I pray that God will keep me strong.

gratitude and fear

I thought I was getting better .....just a little each day, but then today: BAM! and I wake up terribly ill. The fear: I will never feel better. But I'm hoping and praying and so are lots of folks.

SO MANY people have pulled together to help me through the last few weeks. I've gotten cards, visits, calls, flowers, PJ's, meals, and many prayers. I can feel the love and I am so filled with gratitude, it's hard to express. I don't know what I did to deserve it. I am just on my knees.

I just learned of a doctor I worked with in the 1980's. A brilliant man who ended up as Chief of Staff at a major medical institution. He was just diagnosed with Hepatitis C, and I would guess he got it the same way I did; occupational exposure. Another sad story. His has advanced to liver cancer and he awaits a transplant.

So thanks everyone. And I'm keeping hope alive. Not giving up. I'm simply not accustomed to asking for help and/or getting help. But I am very humbled. To the point of tears.

I've been so sick....

Still not feeling better; still not seeing light at the end of this tunnel. Then today, courtesy my friend Ms. Terri St. Cloud over at Bone Sigh Arts, I read this blog. And weep. I am not alone and God is with me.

Thanks, Ter. And thanks to the woman who posted this blog today.
My sign would say:

I am sick and my disease will kill me and I'll never grow old with my spouse or meet my grandkids and I'll never feel good again. Please be gentle with me. Please don't forget me. I am still alive.

You MUST read this:
http://bravegirlsclub.com/archives/2151

Scared to death

It's no secret I've been feeling quite poorly, especially over the past 2 weeks. I've developed a new symptom: severe, debilitating anxiety. It's not psychological in nature; it's in my body. I feel like I am filled with adrenaline, just like you feel when you wake up from a nightmare or when you are very scared like when you almost get into an accident and have to pull over to collect yourself.

At age 52, I am in the throes of perimenopause and that's what my doctor thinks is the cause. Perimenopause is a condition that causes vast swings in female hormones (estrogen and progesterone) and mine are going amok. Nothing unusual for a woman my age, but add the layers of Hepatitis C and getting over a severe virus and there are too many fluctuating chemicals in my body. Interestingly, I can sleep well although I do get the vasomotor effects of menopause - drenching in sweat and alternating with being freezing cold. Drenching in sweat is not uncommon for Hepatitis C either, so it's anyone's guess what is causing that symptom, albeit minor.

I can't go on like this. I feel like I am jumping out of my skin. I've tried everything - calming teas, relaxation meditations, physical workouts to match my body anxiety - everything and nothing is working. My doctor started me on hormone replacement therapy but it will take 2 weeks to notice any difference. In the meantime, it appears I have to suffer through this. Most women have induced menopause after taking chemotherapy. I didn't. Kept getting periods through it all until the last 6 months when I've gone as long as 3 months without one. So I definitely have some hormone thing going on.

I am going to be honest: I don't know if I can handle this. It's the worst possible feeling you can imagine on top of being ill. I could almost sit in one spot - paralyzed by the anxiety I am feeling.
But I'm not going to do that. Instead, I am going to trudge through and do my very best. I've managed to remain kind to my spouse and he is very worried for me. But I'll admit: this just sucks. If anyone has ideas that could help, shoot me a reply. Thanks!

Test results are back!

For those of you waiting to hear, I got some of my tests results back this morning. I definitely contracted a virus and it caused my liver to become severely inflamed, causing my platelet count to drop to the lowest level it has ever been - 70, 000 to be exact. The fact that my platelet count is so low is another sign that my liver function is decreasing. The only tests I am waiting on are those sent to Mayo, but while those will be good indicators of the status of my liver, they are irrelevant given this new report.

Platelets are the most important component in blood clotting. A person cannot get a platelet transfusion until the count is much much lower (these days you almost have to be near-dead to get a transfusion of any sort). So, the only treatment is to be on bed rest, eat foods high in protein to stimulate my bone marrow and not be alone for long periods of time in the event I fell or something. Any of those could cause internal bleeding. I also have many bruises - a tiny bump can cause a huge bruise!

Even though it's not good news, I feel it's better than finding out that they couldn't find anything. Now I can take action to get better and have hope that I will feel better in the future.
So it will be a time of relaxing this weekend and trying (hard) not to bump myself or fall!