Chronic ilness & Isolation; a diagnosis

Have you ever called a person's home and someone answers, "may I ask who's calling?" while you imagine the answerer walking to the person for whom the call is intended saying "so-and-so is on the line" only to return to and say, "no, s/he isn't home" and there you sit on the other end wondering if they just didn't want to talk to you. I sure have and I try to think the best, but sometimes the feeling isn't good. Something like this happened to me this morning. Now I will admit to over-thinking tendencies but thus is the life of the chronically ill. People avoid you. I know this for a fact. Very few are comfortable -really comfortable- being around someone who is sick and dying even when they are doing normal things and having fun. The experts say to tell folks what you need, but I have not found that to be particularly helpful. When I tried to do this once, a "friend" told me she didn't want to be my friend anymore. I'm not trying to whine, just state fact. I'm strong enough to not let this get to me in the long haul, but it's annoying. It's not like I'm going to poke myself in an artery and spray blood all over you. Jeeze.

Good news is that I have been feeling better. It always helps when they find out what's wrong with you! I had an infection in my bile duct (second time) that spread into my bloodstream. That knocked me out from the 7th until last week, nearly a full month. I'm on the upswing now. I'm still weak and tired, but once again - like the Energizer bunny - I'll keep on going. It's a beautiful day and I want to soak up every second I have. I hope your day is wonderful as well!

A little piece of me is gone. Forever.

Nursing is an art: and, if it is to be made an art, it requires an exclusive devotion, as hard a preparation as any painter’s or sculptor’s work; for what is the having to do with dead canvas or cold marble, compared with having to do with the living body, the temple of God’s spirit? It is one of the Fine Arts: I had almost said, the finest of the Fine Arts.”
Florence Nightingale, 1868

Many tears.

Well, here goes

I had the adrenal stimulation test and it was normal. It wasn't too bad. Then I had an ultrasound of my spleen and liver, which you wouldn't think would be bad but it was very uncomfortable as they moved the hand-held device over my abdomen, pushing down on a few very sore areas. It left me with a tender abdomen. My doctor's office called last evening to say that the ultrasound didn't show anything shocking, just what it usually looks like (enlarged spleen, cirrhosis, etc.).

So, I have no answers for now. I am simply exhausted and still feel like something is not right. It's just not normal to get petechiae on your legs unless your platelet count is VERY low. Mine is low, but not that low. And other symptoms I am having do not have any explanation. So, now it's just wait.

After a rough evening, I slept well and feel a bit better today. I'm hoping that this was just a virus or flu or something like that. I'll keep you posted with new developments.

Latent side effects to treatment

I am about 6 weeks away from being off standardized pegylated interferon/ribavirin treatment for 3 years. I should have read the fine print describing the side effects that could be caused but not surface for years.

One of those is adrenal insufficiency (also known as Addison's Disease). This is what my doctor thinks may be causing my current symptoms. Interferon treatment is known to cause this disease months or years after treatment completion. I was on interferon for 18 months, not to mention our body's natural interferon which is being released in high quantities just to fight the HCV in our bodies.

A little honesty here: I am scared to death. I've had 2 acute episodes, the second being today. It is horrible' just look up "Adrenal Crisis" and it's a less acute form of that. I have an overwhelming feeling that I am dying. Duh, I AM dying. But this is different; it feels more imminent and real.

My oldest son has met someone and it is very serious. My youngest son has had a serious girlfriend for 3 years. Mom instincts tell me these are the "ones." I feel blessed that I've gotten to know them. Things are going better with my youngest daughter. We are all speaking more openly, as I am beginning to look ill. I am smaller than both daughters and they are both tiny. When the kids see me, it's shocking.

If you have a moment, while you're praying or sending positive energy out to those who really need it, I'd appreciate it if you'd briefly send one my way. I will be admitted on the 22nd and undergo a series of tests. Not all are for adrenal insufficiency. I have other issues that I am being checked for and it's going to be very unpleasant. I could get very bad news (this is where it SUCKS to be a nurse) and I'll admit - I'm scared.

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No longer a nurse

Well, it's official. I no longer have a job and therefore, I am no longer a practicing nurse. My legs were both just cut off at the knees. I've been doing consulting work consistently for the past 2 years for the same organization, who informed me that my contract is over and thanked me for my service. I looked back at the original training and contract; I neglected to see that it was 2 years. At the time, about 15 Advanced practice nurses underwent training for the consulting role and we all just got our letters thanking us for our service. Problem is, most of them are working. It was all I had.

I did just renew my specialty certification as a clinical nurse specialist and nurse practitioner; I worked really hard to ensure I'd meet the criteria to renew. So, I'll have those credentials for another 5 years and many would think it was stupid (because the cost was $350), it was a matter of pride for me. But I know it will be the last time; I won't have the required practice hours going forward.

Am I still a nurse? Sure. But am I really a nurse? Not any more. Another loss: check.

whew

I am really sick. That's it, just plain sick as hell. I've been sleeping, but there's almost a constant awareness that things in my body are horribly wrong, even in my sleep. I wake up feeling awful. It takes every ounce of my energy to get out of bed and I'm in terrible pain - even with the patch. I'm scheduled to go into the hospital on the 22nd, and when I asked my doctor what I was supposed to do between now and then, he said to drug myself to oblivion - just to stay as comfortable as possible. I've been doing that but it wears off, it lapses and mornings are just so darn difficult.

I've never felt more like I'm dying than I do now.

I used to wake up feeling lousy and have the ability to get up and push through it. Not anymore. I'm not depressed, I have things I am excited about, a great book I'm reading and God his here with me so close. I also have the best spouse in the world, but boy oh boy is this wearing him down and I can see it on his face and read it in his every movement. He's worried.

So, I'm basically a drugged up person with a serious disease that's progressing and probably have 1 or 2 new diseases to add that haven't yet been confirmed but are caused by my disease.

I'm afraid to be alone.

The Society of Those Who Have Suffered would understand. I'm just hoping to get through the week and up to our cabin. I love my home, but for some strange reason I feel better there. Maybe because it's in the woods and so serene.

If both suspected diagnoses are confirmed, there is treatment. My pile of daily medications is growing into a huge pile and more will be added. But I can't shake this body feeling of death. It's just all so sad for everyone around me.