I’m home from the hospital…again. We got home around 2:30pm.
The procedure went well. As you may recall, last week when my pressure was tested it was at 15 (very low for me….can be normal for others.) Dr. Gray added some Cerebrospinal Fluid (CSF) to find out what level I feel my best at, it was 20.5 (this is high for some people.)
We were hoping that by taking me off all diuretics, and having me drink a lot of fluids, my pressure might remain at my optimal level. Unfortunately, this was not the case. By the second day after the last Lumbar Puncture (LP), I was feeling bad again.
Today, I went in for another LP, and probably patches (depending on what my CSF pressure ended up being.) My opening pressure was 16.5, pretty big drop from the 21.5 I had just one week ago.
So they patched me up. They used a new form of the Tisseel (adhesive for tissues), that is supposed to be much easier to work with and is less likely to set up before it completely covers the leak.. (a problem they had before.)
From what I understand I had 8 patches, but on 6 punctures. Meaning, 2 of the times they put the needle in they were able to reach 2 leaks instead of just one.
I’m still forever grateful to Dr. Gray for adding me on today. She was supposed to be off today, going on vacation. However, she really wanted to get me in before she left, so I will have a good chance of going to Tucson for my father-in-law’s wedding. First, it was supposed to be just one patient today, then it turned in to 3. I feel so lucky to have a doctor who is so dedicated to her patients.
I am extremely sore! Perhaps, sore isn’t the right word…I am in pain!! My lower back…OUCH! I’m sure part of it is because I was still sore from the last LP. I think it’s going to take a little bit longer for my back to feel better, but I DO NOT have a headache! I’m a tad dizzy, but I think it’s the pain medication, not my normal spinning.
Let’s all hope, I NEVER have to do this again!
I saw this wonderful list, 10 Tips from 10 Years Sick.,written by Toni Bernhard ( author of How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers.): You can read her post in its entirety at KevinMD.com, but I thought I’d give you a run down of the 10 Tips. However, you really should go to the article, and read her explanations – all comments written after the tips here are my own, unless other wise noted.
1. Take Time to Grieve your Old Life, the Create a New One. – I have found that this comes in stages, or waves, like normal Grief does. You will feel like you’ve gotten through the grief, then all of a sudden it hits you again. You all know I’m a firm believer in…well, this isn’t the life I was expecting, so I’ll expect something new. I have to look at things differently…. If you are a steady reader of my blog, you have seen the many times that my grief is still there. Just yesterday, I got a bit choked up while practicing sign language thinking of the things I may never hear again. But I have the wonderful opportunity to learn a new language and meet all sorts of new people. Oh the things this could lead to!
2. Friendships are affected by illness, often dramatically. – Have I learned this the hard way or what? It’s very hard for me to accept this, but all of my friendships I had before my illness changed. Some have ended, some have continued but it had to change, I’m not the same, and can’t do the same things. (and that’s hard on both me and the friend.)
I like this statement that Toni makes, “As for friends who haven’t stuck around, our friendship may have faltered for any number of reasons—their discomfort about illness, my unreliability as a companion. I know they wish the best for me, and I wish the best for them.” I’d like to add, I realize now that some of these friendships would have faltered even if I had remained well. Everyone has friendships that falter, not just the chronically ill.
3. Illness is the great equalizer. Anyone can get an illness. There are not boundaries it will not cross.
4. Trust your judgment regarding what you can and cannot do. (and give yourself a break! If you can’t do something, don’t feel obligated to do it anyway, don’t feel guilty…trust in yourself, and know your limits. Take care of YOU.)
5. Find beauty in small things. I don’t think I need to add to this.
6. Cultivate gratitude. This may be hard to do… especially on rough days. (read part of Toni’s list, I thought…yeah! I’m grateful for that too!) I suggest you sit down and think of things you are grateful for about being ill. The list may be short in the beginning, but keep adding on to it as you think of something, or when something happens. Some of the things on my list (that I’m just beginning) is: 1- how wonderfully my husband has handled my illness and all the help he gives me. 2 – that I don’t have to cook every night (yes, I love to cook and miss it sometimes, but it’s nice that dinner isn’t always my responsibility any more. 3 – the opportunity to “meet” so many wonderful people through my blog, and other’s who understand and “get it” 4 – If I have insomnia, I don’t have to worry about getting up in the morning….. I’ll keep adding to it, and think I’ll try to re-read what I’ve written when ever I feel like my illness has caused nothing by trouble in my life (perhaps I should read it more often than that, to try to keep those feelings at bay.
7. Some days you’ll just plain feel weary of being sick. Isn’t that the truth! But normally, I can, eventually, push the weariness aside, and get on with my new life…or simply be grateful I have a life.
8. A loving caregiver is to be treasured. This is very important to me! I try very hard not to take advantage of my husband/ my caregiver. I hope he knows how much I treasure him. I wish everyone who was ill, had a loving caregiver, I know I’m very lucky to have mine, and honestly don’t know how I would get along without him.
9. We’re fortunate to live in the Internet Age. This I am very grateful for. I have more support from my cyber friends than I ever thought would be possible. I never thought I could have such touching relationships with people I’ve never met in person. Also, imagine what it would be like if we couldn’t look up things about our illness? How could we possibly be a good advocate for ourselves, if we couldn’t find out this information?
10. This is just my life. I try to say this when I say, so my life isn’t what I expected…I’ll change my expectations. However, I do feel Toni, says it better by quoting Zen teacher, Joko Beck: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.” She adds, I find great solace in these words. Not everything can be fixed—perhaps not even my health. (I agree, and have found that once I accepted this, life got much easier.)
I hope you enjoyed this list as much as I did.
4 thoughts on “More Patches Finished; and 10 Tips by Toni Bernhard.”
Yay, Wendy! Another day of anticipation and anxiety behind you. I hope these patches end up proving to do the trick and give much-deserved relief.
Thank you so much for writing about this book, sounds great. I have found a lot of peace through Buddhist ways of thinking and meditation. I can’t wait to read it!
Keep us posted on how you’re doing the next few days. Will hope each day gets better and better!
Sounds like you had a fabulous day! I hope the pain leaves soon so you can start your happily ever after!
I’m so glad you were able to get in. You’ve got a great doctor! Hope the pain goes away quickly and the new adhesive works better for you.
Have you read How To Be Sick? It’s a great book to have and is definitely one that I’ll reread. Did you know she does a column for Psychology Today about living with chronic illness? I highly suggest that as well. It’s always a great read.
I really like this list…. thanks for sharing!!!