August 20, 2009 - 9:50pm
I've noticed from reading the boards that a lot of y'all are a lot more active than I am. And I want to live life more fully. Some of you mentioned not missing work, except after surgery, and being able to do yard work, exercise, go to school etc. I have missed so much work over the past two years. I can barely work 15 hours a week, down from 50+. I'm a lawyer, so my work isn't that physical but even getting out of bed or taking a walk can be really hard. Last week I could only work 10 hours - and that's a little each day combined. I've had two acdf surgeries and am fused from c4-c7. C3-4 is herniated now. I've had 4 epidural steroid injections, two sets of facet injections, afacet rhizotomy procedure (aka RFL) at 6 locations in my neck. I've done therapeutic yoga, physical therapy (3 diff therapists) 1-3 * a week for almost two years. I've tried accupuncture. I'm on mobic, lyrica, cymbalta, flexiril, zanaflex, oxycontin (20mg 3 / day- just up from 10 3/ day), lortab 7.5/500 for btp, plus meds for my stomach. All the meds really hurt my ability to think clearly & my memory. If I take my lortab for btp, I don't feel comfortable driving. Seriously, I want to work full time, be able to plan my October wedding, travel, drive, etc. It sounds like a lot of y'all have mastered actually living with CP. I am happy with my fiancé and life's simple pleasures but #%^*!, I wish I could more. Id love to garden. Any advice?
August 21, 2009 - 9:40am
#2
expermintation
You have a long list but think you re slowly recouping, try asking the Dr. to change the oxycontin to at least 30 mgs of MsContin, it will be morphine an extended release 12 hours or Avinza 24 hours, try for a week, try not to take breakthrus till after work, take 800mgs of ibuprohen or alkeve if Dr. approves.
it takes expermintation to get you on the right track, an take it slow to begin with even though you might feel like wonderwoman, the more You feel better an move the muscles You will slowly regain control of your body again.
WOODSTOCK, no Dr. just a Hillbilly, hope You luck
MissPriss- When I read all that you're doing, I feel envious of you! I'm not trying to say that for sympathy from anyone, just trying to say that each person is different. For example, you are still able to work, even if it's just for 10 hours a week. I cannot work period. I've tried vocational rehabilitation, gotten various degrees with the hopes of finding something that I could do, all to no avail. I can't hold down a job period because of my health. While some may be able to return to near-normal lives once they find the correct doses of medications and therapies, others cannot. I think it's REALLY important as a chronic pain sufferer not to compare yourself to others. If I did that, I'd be horribly depressed. I'm only in my 20's, but often feel like I'm in my 60's o 70's! I've come to the realization that my life will never be what it once was. Sometimes it's depressing, but I try not to let it get me down. I've had health problems most of my life, but for a while I was doing a lot better and was able to complete 3 bachelor's degrees and by the 25 I climbed my way to senior management at the agency I worked for. I was on top of the world. Then my health started to decline, and even with the most generous accommodations, I wasn't able to perform the essential duties of my job. I loved working and what I did more than almost anything. I would give anything to be able to work again (which is why it bothers me so much when people say, "Man, it must be so nice to not have to work. I wish I didn't have to work."). Even though I can't do what I once did, I look back on the time I was able to work as a very positive experience and it enriched me as a person. Reminds me of the popular Tennyson quote, "'Tis better to have loved and lost, Than never to have loved at all." I'm happy that I was able to accomplish what I did while I was able to work and that I even had the opportunity to work at all.
I used to compare myself to other people my age and say, 'why me?' or even worse say, 'my husband deserves a wife who can do much more than me; someone who can do the normal things I see every other person our ages doing.' Obviously this got me down. I discussed these thoughts with my Psychiatrist and my husband and while it didn't happen overnight, I eventually came around to the thinking that although I can't do all of the things others around me can do, there are still a lot of other things that I can do (and I bet some others around me who are healthy can't do). My husband also helped me to realize that he'd rather be with me, health problems included, than not be with me at all (or be with someone else who can do all the 'normal' stuff who wasn't me). I know your post is more about comparing yourself to other CP sufferers on the board, but I kind of feel like it's he same principle. You can't compare yourself to others as we all have different ailments along with a bajillion other factors that influence our abilities. I think when you compare yourself to others it can sometimes serve as a platform for despair and depression. This may sound hoakey, but the more positive you are in your thinking about what you can do, the better your self-perception will be. When you have high self-esteem and focus on the things that you are good at, the better the mood you are in which often has a positve impact on your health.
As for the pain meds, the best advice that I can usually give on that is speaking with your doctor about your level of relief if it's not adequate. What I usually suggest to people is to keep a journal of their pain and medications. My journal is fairly simple and barely takes a few minutes a day to complete. What I include in my journal are the medications I take, the times I take them, and then I write notes. The notes that I write include the time that the medication kicks in, then I include any activities that I do and what impact they have on my pain, I also include notes about what things make my pain worse, I write down what areas of my life I feel are suffering because of pain at particular times of day and lack of treatment, etc. I also find it helpful to keep a log of my pain level; 1 to 10 like they usually have at the doctor's office. If you find that your medications aren't adequate, then maybe you'll find that an increase would help your quality of life. You can also ask your doctor if there are any other medications out there that may give you better relief. I know it's scary to take pain killers and then go out driving, so like you mentioned you'll have to keep that in mind. My best advice that I can give you though is not to compare your health, activities, etc. to other people on the boards (and especially those without pain) because it will only make you feel down because you're not where you're at. Instead set small, attainable personal goals for what activities you'd like to accomplish so you can constantly be having little victories within your own life. We're all different, even us CP sufferers, so the best person to compare your lifestyle to is yourself.