Nov 22: Health issues and Anger
Three weeks not working! It seems unbelievable. While I'd love to report vast amounts of progress on my list of 'things to do when I'm not working' it wouldn't be true. Despite lots more sleep (9 hours a night!), a spectacularly healthy diet and not being around sick people I'm dealing with another bronchitis. While not as severe as the one in September (which was really bad) it's taking a while to recover. Tire easily and coughing spasms when moving around much. This is probably due to the combination of prednisone, methotrexate and now Plaquenil; all of these decrease the immune system, since the goal is to inhibit my autoimmune disorder. The downside is the collection of side effects, including (but not limited to) decreased immunity, osteoporosis and eye damage.
Ironic here is that my heart condition requires only Coumadin and twice weekly aspirin, but there are SEVEN medications now needed for the Sjogren's Syndrome. Whenever I try to decrease the prednisone the lacrimal gland over the left eye enlarges, causing a foreign body sensation in my eye--not fun. The good news is that the swelling around both my eyes is almost gone, visible only to me and the ophthalmologists, so hopefully now that the methotrexate and plaquenil are building up in my system I can start tapering the prednisone once the bronchitis has resolved.
Reality of all the side effects was reinforced today at my eye appointment, because my retina needs to be monitored for damage from the plaquenil, although they tell me it takes years to develop problems. But once you have damage it never repairs, even if the medication is immediately stopped. So after the usual exam & dilation they sent me for a fancy scan of my retina, so there will be a baseline to compare. In an attempt to keep my eyes more moist the doctor zapped my right lacrimal duct with cautery in order to close it off, which will hopefully keep the eye moister. The left side still has a plug in the duct that's close to 15 years old.
The methotrexate dose remains at 15 mg, rather than the 20 mg goal, because of the severe nausea I get. Have stocked up on natural ginger, ginger tea and ginger candies for when it's bad. Sadly, eating seems to make the nausea better, which blows the hope of 'easy' weight loss.
And you were wondering what I was going to do with all the free time!
All of these issues have given me more incentive to really give the vegan thing a try. It is difficult, and almost impossible to eat out with the additional issue of avoiding gluten as well. My goal is to stick entirely to the plan when eating at home, take food with me if going to someone else's, but know that when eating out bending of the rules will have to occur. I had lunch with a friend yesterday at a diner, there was nothing gluten free of the salads, not even vinegar, so I had an omelet with veggies. I'm getting used to beans, now having at least one full serving a day of either garbanzo or white beans, will start working into navy, lentil & kidney. The only 'cheat' of my days is 3/4 cup of 1% milk in my latte in the morning, and as I get stricter that may go by the wayside as well.
The cardiologist's office dropped the ball, didn't send in the paperwork for the short term disability (STD), despite completing it and sending me a copy. It's been taken care of, and on calling the company today my claim is already under initial review. This is the first Friday with no paycheck and despite knowing that all of this month's bills are paid and I have savings it's still very unnerving.
Being completely honest (and that is the point of this blog!) I have to admit to feelings of anger. They aren't constant or unmanageable, but they are recurring. I'm angry at losing control over my body and the loss of control over my life that it has lead to. I'm angry that I did everything 'right', followed the 'rules' that would lead to a career and financial security, yet now have to give up both because of factors out of my control. I'm angry that in pursuit of that stability I sacrificed developing relationships, leaving me bereft of the support systems that most people have by my age. I'm angry that my belief system of 'everything happening for a reason' isn't particularly comforting under the circumstances. I'm angry that my dreams of what I wanted in my life are so out of my grasp.
Anger is, of course, part of the grieving process. Over the years of my illness I've learned that, at least for me, I need to acknowledge and even wallow in the anger. There are times when it washes over me, wave upon wave of anger and grief holding me down, beating me to a pulp and not letting me up for air.
But then, from somewhere, comes a glimmer. All of a sudden, after seconds or minutes or hours something inside of me pushes through the weight of despair and pulls me upward. I honestly don't know where it comes from. A part of my soul? A Spirit Guide's gentle touch? I start to see the good, the positives, the hope. I start repeating my gratitudes, the things I am thankful for: I have a house, clothes, food, warmth, electricity, running water, a car, health care..... How many millions of people don't have those things? Yes, I worked hard and sacrificed, but in doing so it gave me options that I otherwise wouldn't have had. Life is about change, adaption. Perspective comes back and the anger recedes.
My terror is the day that the glimmer doesn't start. That glimmer, and its consistent reappearance, is what keeps me from giving up or giving in. It is what separates me from becoming one of those people who become nothing but their disease. That is what and who I do not want to be.
Now would be a good time for a drink, but my liver is processing enough meds right now that it wouldn't be fair to add even a glass of wine to the mix. So I will absorb myself by watching ridiculous things on TV, things that make me laugh, problems that are solved in an hour, hopefully with a cat or two tucked up against me.
Thanks for checking in, Laurie
Ironic here is that my heart condition requires only Coumadin and twice weekly aspirin, but there are SEVEN medications now needed for the Sjogren's Syndrome. Whenever I try to decrease the prednisone the lacrimal gland over the left eye enlarges, causing a foreign body sensation in my eye--not fun. The good news is that the swelling around both my eyes is almost gone, visible only to me and the ophthalmologists, so hopefully now that the methotrexate and plaquenil are building up in my system I can start tapering the prednisone once the bronchitis has resolved.
Reality of all the side effects was reinforced today at my eye appointment, because my retina needs to be monitored for damage from the plaquenil, although they tell me it takes years to develop problems. But once you have damage it never repairs, even if the medication is immediately stopped. So after the usual exam & dilation they sent me for a fancy scan of my retina, so there will be a baseline to compare. In an attempt to keep my eyes more moist the doctor zapped my right lacrimal duct with cautery in order to close it off, which will hopefully keep the eye moister. The left side still has a plug in the duct that's close to 15 years old.
The methotrexate dose remains at 15 mg, rather than the 20 mg goal, because of the severe nausea I get. Have stocked up on natural ginger, ginger tea and ginger candies for when it's bad. Sadly, eating seems to make the nausea better, which blows the hope of 'easy' weight loss.
And you were wondering what I was going to do with all the free time!
All of these issues have given me more incentive to really give the vegan thing a try. It is difficult, and almost impossible to eat out with the additional issue of avoiding gluten as well. My goal is to stick entirely to the plan when eating at home, take food with me if going to someone else's, but know that when eating out bending of the rules will have to occur. I had lunch with a friend yesterday at a diner, there was nothing gluten free of the salads, not even vinegar, so I had an omelet with veggies. I'm getting used to beans, now having at least one full serving a day of either garbanzo or white beans, will start working into navy, lentil & kidney. The only 'cheat' of my days is 3/4 cup of 1% milk in my latte in the morning, and as I get stricter that may go by the wayside as well.
The cardiologist's office dropped the ball, didn't send in the paperwork for the short term disability (STD), despite completing it and sending me a copy. It's been taken care of, and on calling the company today my claim is already under initial review. This is the first Friday with no paycheck and despite knowing that all of this month's bills are paid and I have savings it's still very unnerving.
Being completely honest (and that is the point of this blog!) I have to admit to feelings of anger. They aren't constant or unmanageable, but they are recurring. I'm angry at losing control over my body and the loss of control over my life that it has lead to. I'm angry that I did everything 'right', followed the 'rules' that would lead to a career and financial security, yet now have to give up both because of factors out of my control. I'm angry that in pursuit of that stability I sacrificed developing relationships, leaving me bereft of the support systems that most people have by my age. I'm angry that my belief system of 'everything happening for a reason' isn't particularly comforting under the circumstances. I'm angry that my dreams of what I wanted in my life are so out of my grasp.
Anger is, of course, part of the grieving process. Over the years of my illness I've learned that, at least for me, I need to acknowledge and even wallow in the anger. There are times when it washes over me, wave upon wave of anger and grief holding me down, beating me to a pulp and not letting me up for air.
But then, from somewhere, comes a glimmer. All of a sudden, after seconds or minutes or hours something inside of me pushes through the weight of despair and pulls me upward. I honestly don't know where it comes from. A part of my soul? A Spirit Guide's gentle touch? I start to see the good, the positives, the hope. I start repeating my gratitudes, the things I am thankful for: I have a house, clothes, food, warmth, electricity, running water, a car, health care..... How many millions of people don't have those things? Yes, I worked hard and sacrificed, but in doing so it gave me options that I otherwise wouldn't have had. Life is about change, adaption. Perspective comes back and the anger recedes.
My terror is the day that the glimmer doesn't start. That glimmer, and its consistent reappearance, is what keeps me from giving up or giving in. It is what separates me from becoming one of those people who become nothing but their disease. That is what and who I do not want to be.
Now would be a good time for a drink, but my liver is processing enough meds right now that it wouldn't be fair to add even a glass of wine to the mix. So I will absorb myself by watching ridiculous things on TV, things that make me laugh, problems that are solved in an hour, hopefully with a cat or two tucked up against me.
Thanks for checking in, Laurie
posted by Laurie @ 8:41 PM
2 Comments:
At 11:56 PM,
Anonymous said…
Laurie,
Well Laurie I knows you know this, but let it be said.
.....You have to grieve the lose of the job you loved, the loss of the career you worked so hard for and loved, loss of what the old dreams where, loss of the car you loved, loss of your independent I can do everything and be everything for everyone else personality/ability, and you still likey still need to grieve the loss of being a field medic!
Yep at some point you need to see the good you have already done with this ongoing challenge.
....you were smart enough to see the hand writing on the wall and downsided the house and included a rental income. You were able to help your friend and his family deal with his open heart better and have her do a blog to help keep everyone informed in a less stressful way.. You have helped many patients and their families deal with their bad news/procedures/etc. because you understood their side better than the normal "white coat". You have allowed friends and past coworkers to feel like they have helped you by having this blog when you were pushing people away, you opened up here. And I have said this before,,,, you have a way of telling your stories/issues with a good mix of medical info with the layperson understandability! 1....that will or possibly has saved someone's life 2....has helped those of us either dealing with our own issues understand some of our feeling or pushing people away is normal, and those of us dealing with people with chronic or sudden severe issues how they are feeling and why those people are pushing us away. Allowing us not to give up on them, and support them better! You have helped many w/in your church by the talks you have given. And on and on, I am sure there is plenty I have missed that have not made it to this blog
The next phase of you life will be a work in progress, finding the mix of what you can and can not do, still learning to ask for the help, learning who the new Laurie is. There is still plenty you can still do to help people. Yet I know you would be disappointed if I didn't mention writing those books I talk about,,,,, but still talking at your church, you could start a blog focusing on all that pa training, tips on everything from head to toe, tips on what to do and not do in hospitals, things to do at dr apps,,,,, etc,,,etc,,,,etc,,,, tips from your background as a medic, tips on being a better friend to those devastated by bad news,,,, tips on how we (non patients) can better help those people. Tips on why it hurts when people tell the ill, get over it/well you look fine ,,,etc, you have done segments in this blog on some of those things we don't think of that have been said to you. Tips on patients learning to ask for help, there is so much I could keep going but I think by now you got my thinking. YOU can still so help people, just have to do it in words, on the couch, cat in lap computer in hand, do it typing, or get that talking program and talk it out. YOU still have a lot of great miles in you, just need to do most of it off your feet.
Once you get the blog and book thing down pat, you could start doing webinars with other churches and their groups, webinars with support groups, hell girl you may even start a non profit support group for overwhelmed patients/friends/family. Teaching us all how to come together better,
Ok I am gonna go now. But remember you have the right to be disappointed, anger, etc.....you worked hard for a dream that got wiped out. You have struggled for years to try to hold onto a version of that dream and that has now been wiped out. The old you is phasing out, making room for this dynamitic new you. But it will take a while for you to meet her. And learn to like the new her (you)!
Have a great thanksgiving, hope your mom is doing well!
Deneen
At 3:46 PM,
Anonymous said…
Hear, Hear, Deneen! Thanks for putting into words what we are all thinking. My cousin was really touched by your comments and it means a lot to her to know she has people rooting for her. Even in her 'reduced' state, she continues to run circles around me (maybe not physically, but mentally and in all the activities she continues to pursue).
Happy holidays! Susan
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