....changing meds, part deux

Sorry, I've been gone awhile. I would say I've been sleeping nearly 65% of the time since I last posted. I weaned down the Fentanyl and started the replacement oral drug one week ago. The worst side effect of this process is sleeping. Actually, I don't mind this side effect at all as long as it doesn't last! But seriously, I am beginning to sleep less. And, I've done some fun stuff on the few days before I make my next dosage taper. Now that's ALL behind me and I just have to see how my body adjusts.

My disease is progressing. I am retaining fluid and it's become quite noticeable. I woke up one morning with lines on my arms from where my PJ's cuff was and they were still visible at the end of the day! This also happens with my face and I look sorta dorky with deep lines that last all day, but oh well. I'm not a vain person so whatever.

I think back to this journey which began 6-1/2 years ago and can't believe where I am. First, that I'm alive! Second, how much I've gone through but still feel happy and mostly how much I have grown as a person, mostly in spiritual ways. I guess when you have 6 years to think about it, you do just that. I am currently reading a book called Lectio Divina by Christine Valters Paintner. I think it's a must read for anyone looking for deep spiritual growth. Lectio Divina is a Benedictine practice of very specific prayer - a discipline that is best described by your life is living a prayer. It could be applied to a person of any faith or denomination, or to the agnostic. I don't know if it's age or my situation (or both) that have also caused me to turn inward. I have become much more quiet - needing the quiet in my life, and reaching out to those who bring positive things to my life. All lessons I'd wish I'd learned years ago.

So I will leave you with a passage from the book, written by a teacher:
Do I posses the
tongue of a teacher?
One who feeds others
with a word
with open ears
and an open heart?
Do not turn away
this is your life
your sacred work
your sacred work.

How about you, me? I am more than Hepatitis C. What is my sacred work?

14 days = 2 weeks

2 weeks ago today, I began an intentionally difficult journey. I decided to go off the Fentanyl (opiod pain killer) patch. I was getting tolerant of the 25 mcg./hour and it was time to boost my dosage. I did not wish to get into the trap of needing more and more pain medication and increasing my dose over time. I actually read about a woman who used a 100 mcg./hr patch - but she needed to use 14 patches at a time! I did not wish to become that person. I am not judging what other people need to do - I respect other people's choices, but I need to do what's best for myself.

So, under Doctor's supervision, I quit - cold turkey. I am very blessed that I don't have a propensity toward addiction, but I knew it would be difficult. Many people are unable to do it. So...2 weeks ago I tore off that patch. Whoa! Within 12 hours, I was drenched in sweat, everything hurt, and I could not even think of food without throwing up. This part lasted 72-hours, and what happened next was that I felt like I had a VERY BAD flu. But every day, I felt a little better....and then, I really did get the flu just as I was coming out of the physical dependence on Fentanyl. I got a sore throat, fever, cough, GI symptoms, everything. I am just now getting over that and then BAM! I got my period (sorry if this is TMI) which I am shocked about since I'm only getting them every 4-5 months. And it's a doozy, so there you go. My last 14 days.

And still trying to be positive and focusing on all the fun things I'm going to do when this is OVER!

A breakthrough in my disease

I just realized how long it's been since my last post. The holidays are so busy and crazy with 4 grown kids! I managed to have a nice holiday season and I hope your holidays were enjoyable.

I experienced a huge breakthrough in my HCV - it may have taken 6 years, but it's huge. I became ill right after Thanksgiving and for the first time, I could tell that I had a virus - intestinal flu to be exact - and it was not a flare-up of my HCV. I have never been able to tell the difference before but I've really worked on listening to my body and I finally got it. You might be thinking well, duh Sue. That's no big deal." But when I get sick, I also get fearful that I am having a flare up and I may not get better. This time...by practicing the skill of listening to my body...I knew with 100% certainty that it was another virus and that I would get better. And I did after about 10 days! That's HUGE!

I also saw the liver specialist (I see him yearly) and my CT scan showed minimal changes from one year ago. He was astounded that my disease has not progressed much. He felt it was due to my meticulous attention to diet, exercise and overall help (which includes listening to my body).

I've also been working on getting off medications. Before HCV, I didn't take any medications whatsoever. Now I am on about 5 that I take regularly. I'm proud to say I have gotten of 2 of my meds completely. The most difficult one is coming up in late January, but I am resolved to do it. I am in favor of taking medications rather than suffering, yet I hate to take something I really don't need.

Happy New Year to all! I wish you peace....Sue

Most days are good, but not today

When I have a really good day I tend to make the most of it. Yesterday was one of those days - I ran a bunch of errands and was on the go most of the day.

And guess what? Today I am paying the price. I am exhausted, in pain and feel lousy. But I am not going to change anything. When I feel well, I still need to take advantage and do as much as I can EVEN if it means being down for the count the next day. I cannot and will not take it easy on a good day. I feel as though I MUST do as much as possible when I can. Live life to the fullest when I am able.

So, I am still in my jammies and taking it real easy. A good book, a cup of coffee and time with my spouse are all I need today. Oh, and can't forget my dogs! My life would be so lonely without them. I always think about what people are missing in not having pets. One of our dogs in particular is very intuitive when it comes to my health. She's always by my side when I'm not doing so hot.

But my mantra stands: Doing my very best, every day.

November is here!

Following a rough Sept/October and after a trial of 4 different medications, I think we finally got it right! I am feeling so much better -sleeping GREAT, able to do more things and very thankful for a boost of energy just before the holiday season begins. I know I'm ready to tackle a big Thanksgiving dinner and my kids will all be home. I love to cook and cooking for my family is simply the best. I can't wait!

Today I realized (duh) that I don't have boundless energy. In my mind I always do, but my body doesn't cooperate. I washed & waxed my car; cleaned the inside as well. It is such a gorgeous day I decided to rake some leaves. We have 3 major yard segments, and my goal was to complete one of them. I got to raking and ran out of steam - became completely pooped out with only half done. I know when I've reached my limit; I simply cannot go beyond a certain point or I will spend the next day paying for over-doing. So I stopped. And I don't feel sorry for myself; instead, I am grateful for what I WAS able to do.

And...while many days are quiet - nary a phone call, I can say I love the solitude. I turn inward, to God, and finding beauty. I am hand-making a bunch of Christmas gifts this year and it's been a fun, creative process. I never run out of books to read or things to do. I have to make up for all the time I've been so sick!

I am hoping that the beginning of November marks a turning point. Two major milestones in my grieving process occurred in October of last year and I grieved them appropriately this year. With that behind me and looking forward to what's ahead - I think the end of the year is going to end just right.

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!

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.

Invisible Chronic Illness week

This week is National Invisible Chronic Illness week. What it means for me is that I get a daily email with an inspirational story, a lot of food for thought and awareness. Just about when I think "Ok, I'm going to feel sorry for myself (as I seldom, if ever do), I hear/see/read something that brings me back to how very fortunate I am.

Today's story is like that. It's about a woman with a myriad of diseases and is home-bound. I read her story and felt a twinge of guilt over having ever whined about HCV. My gosh, there are so many suffering people out there!

But this story ended with a comment that really made me think. I am quite sure you could apply this to any person; healthy or not. It's called "Healing words." This woman says:

Recently I’ve had a lot of reckless words spoken into my life and my health situation. Well-meaning family members, friends, and doctors have said things that to some degree, robbed me of hope, faith, and joy. It’s been a fierce battle in my heart to fight off the constant barrage of negativity their words created.

This is a great lesson for all of us. Before we share that “helpful” idea or something “the Lord laid on our heart” that our loved one “needs” to hear, let’s ask ourselves if we are planting seeds of hope and healing or if we are truly piercing them with the sword of our reckless words.

Hmm. I'm not thinking about what people are saying to me.

I'm gonna think: am I planting seeds of hope and healing? Am I?

How ironic

I got word yesterday that a manuscript I submitted to a peer-review nursing journal has been published in the August issue. I also recently re-certified my clinical nurse specialist and nurse practitioner license. It will be my last time; I won't have the requisite practice hours next time around. So, I'm still a nurse with credentials and I just got published. But the other, ugly side is that I am not working at all and will probably never practice nursing again.

This week marks the anniversary of a wonderful week spent up north with my dearest friend. She passed away unexpectedly last October. I still miss her terribly and this week I'm feeling morose. I know that's the reason. I am blessed with dear friends, but close friends of 30 years or more are rare. We used to talk every Sunday night. Oh how I miss her! Grieving is such difficult work; and it never completely leaves us. I have a hole where Susan used to be that can't be filled, replaced or repaired.

People with HCV often monitor this thing called "viral load." Basically, it's an indicator of how many viral cells are floating around in your body. Surprisingly, one with HCV does not have a steady level. Logic would dictate that viral load is commensurate with length of infection, but that's not the case. Actually, viral load fluctuates for a variety of reasons. I seem to run in the area of 1.8 million (very high). But it's probable there are times I drop to 1 million and times I exceed 2 million. My doctor no longer monitors this indicator as it's irrelevant at my stage and it's an expensive test that gets sent to Mayo Clinic. But my recent symptoms would suggest that my viral load is running high. I feel more flu-like symptoms in recent weeks. Today it's unlikely I'll get dressed. Yesterday I plowed through it and had dinner with my spouse at a friend's home. I didn't feel well, but I still went. Yeah, I should listen to my body but sometimes I just gotta get out and do something, anything to get my mind off how lousy I feel. Today I am paying the price, but it was worth it.

I must mention that this is invisible illness awareness week. Today's message: how to cope with a crisis when you have a chronic illness. Here's the link: http://invisibleillnessweek.com/2011/08/16/5-ways-to-cope-in-a-crisis-when-living-with-a-chronic-illness/

Mornings

I've been feeling well with two exceptions: mornings and bedtime. My mornings have been difficult and I never feel well. It takes all the energy I have just to get out of bed, and when I think back - even when I was feeling great I didn't wake up feeling that way. It's really wearing on me. Sometimes I feel like giving up, but I am not sure what I mean by "giving up." Certainly not death. So...I guess I have no choice for now. Once I get moving, I am fine - but the 'getting moving' part is what's so hard.

And lately, I have been getting sick around 9PM every night. I can't fall asleep because I feel too lousy. Going to bed and falling asleep is a 1-2 hour ordeal.
I'm just plain worn out I think. I have cycles of feeling well and then I over do it to make up for lost time; then I have a month like June when I spend most of my time in bed. Then another period of feeling well. Grateful for feeling well, but wishing I didn't have to fight so hard.

When does a person simply get worn out from working so hard? How long can I keep this up? In December it will be 6 years. Thankfully, I AM still alive. But 6 years of not having one day where I felt great from getting up to going to bed is so very difficult.
Guess this is a whiny post. Oh well, I needed to get that off my chest. I guess it's okay to whine today because it's okay to be real.
And my "real" is one big, fat whine.

Hello!

I've been gone awhile because 1. I've been feeling GREAT! and 2. I was on vacation. I'm so glad to have the month of June behind me - it was awful but I've been consistently well since then with just a smattering of difficult days, and had a wonderful, relaxing vacation.

I've been seeing a grief counselor through hospice - I think I wrote about that before. While I was on treatment in 2006 and 2008-9, life did not stop around me. I missed a whole lot. Mix in some very difficult losses, such as the death of my dearest friend and I realized I have so much grieving to do. I actually made a list of all the things I need to grieve and have neglected to attend to. I would highly recommend working with a grief counselor to resolve these issues - it has been very helpful for me. For anyone living with chronic illness, there is great loss. Those who are healthy and have friends with chronic diseases need to understand how difficult this is. What can you do? The most important thing, IMHO, is to not forget your friend. DO NOT FORGET THEM.

A couple of long-time friends asked me out for breakfast earlier this week. I didn't realize the purpose of getting together was for them to scold me about not asking for help when needed. They confided that many people want to do something, but are at a loss as to what would be helpful. And...people are afraid to call you at a bad time. I didn't realize these women cared. I really didn't. I thought they had forgotten me! But it's just that difficult reality of them not knowing what to do and when it might be needed. So, I promised to reach out in the future. That's something I need to improve upon.

Last night, I went to my HS reunion. We don't have them on traditional years (10, 25, etc.) because our town has a huge festival in August and so many come "home" to attend the events and visit families. We've been doing this for years now, but last night was the first time I've gone since my 10th year anniversary (which was well over 20 years ago). It was fun to see people I once knew and then stare at those who you recognize but can't place. My class had 523 graduates, so it was difficult to know everyone. I woke up thinking that it was so good I got to go and I am not sitting here today grieving the fact that I was too sick and missed out. I hope that
that will sound familiar for those of you struggling with illness; and I hope those of you who are healthy realize how much little things count. If you have a friend who is ill, send them a card. Give them a call when you have time to really listen (nothing worse than being told "gotta go" every time you talk to someone), or take them out to breakfast and scold them for not telling you what they need.

Wow, I'm one lucky gal!

National Invisibile Chronic Illness Awareness Week

is September 12-18, 2011. As a member of the group, I am going to participate fully, so let the party begin! We start by answering the following questions:
30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Hepatitis C
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005 (and subtle ones much earlier in retrospect).
4. The biggest adjustment I’ve had to make is: Not having the energy to do the things I was accustomed to doing.
5. Most people assume: I look well, and am therefore doing well.
6. The hardest part about mornings are: Waking up ill and realizing it is not a nightmare; it's real.
7. My favorite medical TV show is: I don't like any. As a NP, I'm too critical of errors!
8. A gadget I couldn’t live without is: My Kindle e-reader.
9. The hardest part about nights are: getting a full 8 hours of uninterrupted sleep.
10. Each day I take 6 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Have tried a strict regimen, under doctor's supervision. While taking herbals, my liver enzymes skyrocketed so they are not for me.
12. If I had to choose between an invisible illness or visible I would choose: Invisible; it makes it easier on my family.
13. Regarding working and career: I do what I am able but know I could never hold down a full-time nursing career again. This is a huge loss that I grieve daily.
14. People would be surprised to know: That I'm a very happy person!
15. The hardest thing to accept about my new reality has been: Not being able to make plans that I know I will be able to carry out when the time comes.
16. Something I never thought I could do with my illness that I did was: Learn to slow down, relax and enjoy each moment. I led such a busy, hectic lifestyle beforehand that left little time for "down time." I now also have the time to fully deepen my spiritual life.

17. The commercials about my illness: I've only seen one and it is about getting tested for HCV.
18. Something I really miss doing since I was diagnosed is: Hiking long distances.
19. It was really hard to have to give up: my career.
20. A new hobby I have taken up since my diagnosis is: art, poetry writing.
21. If I could have one day of feeling normal again I would: Take a long hike & go backpacking with my whole family.
22. My illness has taught me: Who my true friends are.
23. Want to know a secret? One thing people say that gets under my skin is: "You look so good!" I know they mean well as I've lost a great deal of weight and don't look sick. But the suffering I went through to lose that weight is not something I'd wish on anyone.
24. But I love it when people: Call me. It means so much just to get a call, or simple card. It's about the little things.
25. My favorite motto, scripture, quote that gets me through tough times is: "All shall be well, and all shall be well and all manner of things shall be well." St. Julian of Norwich.
26. When someone is diagnosed I’d like to tell them: You have no idea of the horrors ahead of you, but I would never say that; they need hope and assurance.
27. Something that has surprised me about living with an illness is: how difficult it has been for our family.
28. The nicest thing someone did for me when I wasn’t feeling well was: A friend came to stay with me over a weekend when my spouse was out of town and I was feeling quite ill at the time. She gave me a manicure and pedicure!
29. I’m involved with Invisible Illness Week because: To raise awareness of invisible illnesses.
30. The fact that you read this list makes me feel: Like you took time to care.

Pain Care Bill of Rights

Whew! Storms passed. Roads are closed, trees down and deaths reported - none in my immediate neighborhood though. The worst is over so.....
I've been seeing a hospice bereavement counselor per my doctor's advice, and it has been tremendously helpful. She gave this to me recently.
Pain Care Bill of Rights
* The right to have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other health care professionals.
*The right to have your pain thoroughly assessed and promptly treated.
The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks and costs of each.
*The right to participate actively in decisions about how to manage your pain.
*The right to have your pain re-assessed regularly and your treatment adjusted if your pain has not been eased.
*The right to be referred to a pain specialist if your pain persists.
* The right to get clare and prompt answers to your questions takes time to make decisons, and refuse a particular type of treatment you choose.
Source: American Pain Foundation, National Hospice and Palliative Care Organization.