Wednesday, March 25, 2009

News from my hospital bed

Well, hello. It's been six weeks since I've posted - okay I confess I've been at Clube Cedar Sinai Hospital. And four weeks of that was spent in ICU without communication except for writing - yes, I have a treche. The short story is that I had my husband take to the the ER because it hurt so much when I breathed. They admitted and tubed me immediately I'm told - really serious double pneumonia. Two intibations later the trache is working well. They gave me a talking one last night, so I can do short sentenses as well.

The lessons are far too many to list. I'm mostly aware of how I survived my own terror over being so ill. I don't know what I'd do without my faith. Hymns, childhood choir songs, scripture memorized all helped me through the days and nights. What a treasure our childhood is; a treasure of what I know for sures and its implanted deep in my heart.

My kids were amazing. They made sure I was not alone for one day!!!

My mind is swirling so I'll just say hello for now. It's good to be back.

Friday, February 6, 2009


Friday, February 6th

I need to rant and rave today - thank you dear daughter for ranting for you/me.

LUPUS - you suck there is NOTHING GOOD OR worthwhile about you! All you do is cause pain

It is not FAIR that one stupid disease causes so much upset for so many people.

Where is the hope???????

I spent last night in the ER with my sweet husband. Monday morning, 10:00am surgery - a thoracotomy. Splendid. Lupus has deteriorated my tissues and paralyzed my left diaphragm causing immense pain and spasming. I have not one but two, two diaphragmatic hernias - one big, the other smaller. No choice but to totally open me up, remove what's dead or damaged and put mesh or plastic in my chest to protect my colon from getting caught up under my diaphraghm and getting pinched - again. This is surgery event #2 for a trapped colon. Grace? Nothing has exploded. Why does this have to happen to me????? For that , I am grateful. I'm just tired of all these medical things that get in the way of my life. I'm supposed to go to DC in a few weeks for the Lupus Advocacy Day - I really want to go. I just hope I am able to.

This is where God comes in big time. I just don't know what I would do if I didn't have faith that he is with me every step of the way. That's the good news.

Friday, January 30, 2009

Tests and Doctors

Friday, January 30th

I'm wondering why anyone would ever read this blog? I want to share encouragement, strength and hope - but getting there is always painful or difficult.

This has been a week of doctors and MRI's and swallowing studies. My doctors are great. The techs all know me (you too?) because I've had so many tests done in the past 18 months. The tests themselves exhaust me to say nothing of the 1.5 hour drive each way with no traffic. Needless to say I'm tired and hurting today. But I don't want to stay this way.

So, I need to do somethings that will lift my spirit. First on that list is walking the dog. I am blessed to have a beautiful path we drive to to walk. That will help. I want to bake for my husband's birthday party tomorrow - do I have the energy? Could I do it and not feel resentful that all my energy went to his cake and snacks. It sucks when you only have 3 good energy hours in a day.

So much of this disease is figuring out how to live with all the nagging, relentless body issues. So often it's a daily thing to just keep my spirits up. I need to remind myself that I do it for me - when my spirits are up my day is definitely better. That's the reason I work so hard to have a good attitude. While attitude isn't everything, it's probably 90% of it. Attitude of gratitude. Okay, that's where I will be for now.

Tuesday, January 27, 2009

Making Plans Makes Me Happy

Tuesday, January 27th

It's 9:00 in the morning and I'm feeling happy! I woke up in pain. I made myself get up by 8:00, took my meds and my pain meds and then just slowly moved into my straightening up the house motif. I sat down to send a few emails - it's snowing in DC my daughter says - to tell my daughter and son that I'd be able to visit them in March! One thing led to another, series of emails back and forth with the kids; planning to camp in July with cousins; and then I notice that my heart is happy - genuinely happy!!! Is it because I get to see my kids that I miss so much? Sure some of it is. But when I really sit and ask myself why I am so happy right this minute, it's because I am making plans. In the midst of a flare; during dark moments full of dark thoughts when I ponder what my life will be like in five years; not ignoring the ecomony hitting us square in the face - all this is still real and still ocurring and I feel happy. I haven't felt happy since sometime during the holidays.

Happiness is not a guarantee. When I was a little girl of 10, I found this magnet at the bookstore of the church camp where I first really met Jesus. It still has a place on my refrigerator. The magnet says - "Give to the world the best you have and the best will come back to you." I remember well the session when my therapist told me that there is no guarantee that giving your best will guarantee a good life. I was shattered, angry and lost. Whether you call it Karma, turning the other cheek or any host of words, underneathe is the hope, the wish that we can control our daily life. We can't. Sure we control every thought we act on and every movement and decision we make. But when it all gets thrown together to create an hour, a day, a week, a month, a year, a lifetime; we realize that so little of what happens is out of our control. Lupus gives me extra doses of reminders that I'm not in control. One of the funny movie lines that is filtering through the culture lingo is "You're not the boss of me!" Well, many times Lupus is the boss of me. So what do I do? How did I get to a happy day today when the last eight or nine days have really been a struggle? The only difference is that I am making plans to do things I love and I do believe that I will be healthy enough to travel back east. It just makes me feel good.

It's not easy to find the feel good things. For me, they happen, I realize that I'm feeling good then I look at how I got there. It is never by plan and always by gift - what an awkward sentence but I'm trying to communicate the vast difference. I believe that the joy and goodness in life comes when we are going about doing the things we love to do and doing things for those who need our help. The joy is the gift - the grace. My heart is still smiling. I will take it in and enjoy as long as I can today.

Sunday, January 25, 2009

Another painful day

Sunday, January 25th bedtime

My days are really hard right now. I never wake up without pain - which makes it so much harder to get up and start my day. I know that there are times when I do wake up without pain - and life is so much different on those days. I took my extra pain meds immediately this morning - usually I wait until a few hours into my day - but today, today I didn't want to waste half the day waiting to see if the pain was going to get better. The meds really do help. But they are so strong and serious that I feel like I shouldn't need them - but I do. My pain management Dr. says it's okay. I've never had problems with cutting back or stopping pain meds. I hate admitting that I need them again. I also hate how useless I feel when I lose more than half my day because of pain limiting what I can physically do and meds limiting my ability to safely drive. Did you know that if you are on pain meds on a regular basis, that it is very possible that if you get pulled over by a cop, you could end up with a DUI as a result of blood tests and pain meds? Even more than this very real concern, is that I am affected by my meds. I know my clear thinking is fogged; I am a bit looser and less concerned about things; so I need to make choices that are safe and smart.

So today was another day of pain, although I did get a fair amount accomplished. And I didn't spend hours on the couch worn out or pained out. I did the things I needed to do and even saw a movie with my husband - but there was little joy because of the constant pain and weariness. I see my doctor this week and I will find out what more I can be doing for my myofacial pain and osteoarthritis. I need to be more assertive with him because he's fairly remote emotionally and tends to move through the apt. quickly with no extraneous dialogue. I need to talk with him more so he better understands what life has been like the past week or two.

It's 8:10 and I'm beat - ready for bed. I've been working on a project for one of my kids - so I am exhausted. Lupus takes so much out of me. Is this a flare? I have the rash. So, I think it is. Not that I want that to be true. I really just want to understand what I need to do to feel good most of the time. In consideration of doing my part to relieve pain, I will head upstairs and do some exercises before I give in for the night. I need to feel more joy and contentment. I need to feel like my day and time is worthwhile. I need to feel like my life is not overshadowed by my disease. But right now, Lupus is overshadowing my ability to enjoy my day.

Saturday, January 24, 2009

Caught in the disease once again

Saturday January 24, 2009

I hate Lupus. I hurt all over. It's been a really bad week with pain and depression. They are related. The pain keeps me from doing what I want to do and the depression hits when I feel so useless and unable to act in a way that allows me to control my life. I had to cancel coffee with friends and that is really hard except when I feel like this I also don't want to be with anyone. I wish I could get myself out of this depression. I don't seem to be able to. And I hate it. I want to have enough will power to overcome the depression and do things that I love to do. I also believe that the pain (osteoarthritis and fibromyalsia) should be something I can do something about. I walk every day. I'm doing stretching DVD's several times a week (trying to come back after 8 chest surgeries and 2 open abdominal surgeries). The stretching is exhausting. And somehow I don't think it should be.

I've been writing about how I am not my Lupus. It's so much harder to feel that when my body feels captive to it's manifestations. I'm in remission. But I still hurt so bad. I don't want this to be a whiny entry. I want to cry. Crying is good. I know what is needed at this point - total and complete surrender to how helpless I am in the face of Lupus. Here come the tears. Helpless - doesn't mean I can't do things for myself - helpless means that there really is nothing I can do when I am taking my meds, getting my exercise and getting rest and the pain and exhaustion are still in charge. I have to admit one more time that I am truly powerless over the pain, the depression and the frustration; that for now the best I can do is acknowledge how much I hurt; to admit to how depressed I am and to try and take the next step that will send me on a path that might lead to some joy or satisfaction. My first step was to walk my puppy. He brings me great joy. It's raining and I still went walking. My next step was to write rather than go to bed. I want to go to bed. But that won't help anything really. Sometimes I do need to go to bed and wallow in self pity for awhile. But I can't do that for too long because it is so destructive. I hate it when people tell me to be grateful because there's always someone who's worse off than me. It's true. I am really lucky to be alive - Lupus did almost take me last year. I have arms and legs. I am not paralyzed. My body responds to my commands. I don't have cancer. That's what I do. I list all the things I am grateful for not having. It helps somehow.

So here I am left to face the day - it's only 9:00am. My husband is off with his sports car for the morning and I am left to me. What I choose to do next will impact the whole morning. This is true at every juncture where I have a choice of what to do. Will I give in, much different than surrender, to my fatigue and pain and sleep or watch TV? Or will I decide to do one of my fun activities that are available to me. I could sew; scrapbook; finish a gift for my daughter; clean out my closet; the list goes on.

I don't feel as much despair as I did when I sat down to write. Surrender really works. And when you've really learned how to emotionally surrender, it doesn't take hours for my mood to shift - it can happen quickly - just by writing this blog. What helps your emotions shift? It's so important to know what works for me. Because then I am not a victim, I am a survivor. Being a survivor gives me choices. Being a victim leaves me destined to repeat patterns that only bring me down.

Give me enough grace today to be kind to myself when I am angry, frustrated or limited by Lupus. Let me treat myself as I would my own child - with love, concern, help and hope.

Tuesday, January 20, 2009

If I Am Not My Lupus Then When Do I Feel So Discouraged?

Tuesday, January 20th an historical day for America

I missed the inauguration because I was at the doctor. Seems appropriate for me somehow. I watched bits and pieces of this historic day and allowed myself to feel the impact today might have on our history as a country. That's not why I'm writing.

I'm discouraged and depressed, again. We went to the doctor for test results - all of which I knew were not good news. I thought I had prepared myself to hear the doctor put into words what I already knew; the tests confirmed that you have nearly no colo/rectal function. You do not have the muscles to push waste through your system. Okay, I have known this for many months and suspected that it was irreversible for at least six weeks. The doctor stated what we all ready know - I cannot have a bowel movement without using an enema. The new information was what I most fear; I use the enema until it no longer works then we look at removing your colon. My body sinks into itself. The very thought of a colonostomy and what it takes to get to that point is so discouraging. The good news is that it's still in the future. So for now, just keep doing what I'm doing.

What about my lungs? Well, medical expertise seems to believe that I am aspirating into my lungs, causing essentially pneumonia. So, another swallowing study to determine if indeed there is a leak in my stomaphegus. The thought of having a leak is more than I can take right now - it was a leak that began the beginning of the end of my esophagus.

Now how about my pancreas? Well, we all seem to agree that the opening is pinched by your paralyzed diagraphm. Do the test next week and go back to your specialist and she what she suggests. It will either be more tests and the answer will be determined from this test. By the way, the test has a very high outcome of pancreatistus; 1 in 4. I am not going to be the 1 this time.

My head hurts and I am tired. I want to have the strength to deal with these medical issues when they need my attention, and then get rid of them so I can have other things going that matter to me. I want to work on a seminar about Lupus and couples. I want to get a web presence to help others with their Lupus problems. I want to finish my quilt. I want to be free from the ever present load I carry with me much of the time. Right now, I just want to lie down and sleep. I'm tired and I'm down. It's always a decision between giving myself some time to absorb what the doctors tell me or just pushing myself into tasks to get my mind off what's not good news. I used to push myself to forget. Today I am much more likely to give myself time to absorb and react. When I do give myself this time, I usually come up out of the depression and move forward from an emotionally connected rather than forced place. And I am grateful that my kids are all grown and out of the house so I have the freedom to lie on the couch for an hour or three before I move on to the next task before me.

I know I am not my Lupus but some days it's much harder to feel that than others. Today is one of those days.