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!

I found this great article!

I found a great article that describes living with invisible chronic illness very well. Despite my bad report yesterday, I still look relatively well. So, please read this and inform yourself so that you can know how to help your friend or family member rather than hurt them by saying things that are not helpful.

Is Living With Illness Choosing to Give in?

Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.

For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.

I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”

Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.

Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.

I have never given in and allowed it to consume me.

But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.

“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”

What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.

1. We are not using the alternative treatment of product that they sell that will make it all go away.

My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?

2. We are seeking health assistance from doctors or medical specialists.

A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.

3. We are pacing ourselves.

Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.

4. We are not where someone wants us to be spiritually.

We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!

5. We are not doing physical activities that we are expected to do.

If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.

Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.

If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”

Scared...

I have been having my physical challenges lately - feeling a lot like I felt when I first got ill - before my diagnosis. This includes extreme fatigue, adrenaline rushes that make me feel suddenly anxious, fevers and sweats and body aches with overall malaise. It's been about 10 consecutive days now, but I did have a better day yesterday and hoped that was the end of it, but it wasn't. I woke up at 4a.m. drenched in sweat and with horrible body aches. So...I went to the doctor today (I made an appointment last week).

This is not good news: My doctor checked me for many things to make sure that he isn't missing something (such as pneumonia) but he is pretty confident that my disease has progressed and my liver is failing. I could put pretty words to it, but this is the beginning of the end. Liver fails = transplant or die. I can't give a time frame; Only God knows, but it's doubtful to be imminent; yet the news is hard to hear. My husband and I cried all the way home. It's going to happen. I just don't want to suffer much, so please send your prayers and thoughts. I would greatly appreciate it.