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.
Tuesday, September 6, 2011
Tuesday, August 23, 2011
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.
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.
Wednesday, August 17, 2011
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/
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/
Friday, August 12, 2011
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.
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.
Friday, August 5, 2011
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!
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!
Saturday, July 16, 2011
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
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.
Monday, July 11, 2011
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.
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.
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