July 2012, after pedicle subtraction osteotomy. Before cane, now I can't sit or use a cane.
Using the cane in July 2012, improving until December when severe adhesive arachnoiditis hit me.
Life was good. I did what I wanted on 4-6 Darvocet / day. Now 23 hours I am laying down out of 24.
I used to worry and feel that being thin was the MOST important issue in my life. I worked hard to get thin and fit exercising two to three hours daily. That amount of exercising allowed me to eat 2300-2700 calories daily and I still lost 30 lbs.
In one afternoon, at PT, I overpowered my pelvis and lost by bodies coping mechanism to walk. It changed my life FULLY and has changed my priorities. Now my goal is to have some life. I currently can't do daily life activities. I awaken at 11-11:30 am, it takes me 20 min to get dressed, comb my hair and brush my teeth, after that I go on a 0.3 mile walk with my Dad which takes 30 minutes. That activity is all I can manage in any day. I am told it will never get better.The rest of the day is either laying on the sofa or sleeping on the bed. Most nights I can't sleep until 3-4am. And it starts all over again.
I initially gained 13 lbs back. I cut my caloric intake down to 1500 calories. This is a struggle, but I haven't gained anymore. I need to cut 100 cal. more but I don't know that I can since food is the only enjoyable thing left in my life and that is not getting much fun food.
UPDATE: February 2014: I have been diagnosed by two doctors, one of which is the only doctor to have written two medical texts for doctors on the disease,with severe adhesive arachnoiditis. One doctor is quoted as saying, "it has the pain of bone cancer without the prospect of an imminent death." I am doing palliative care. The liquid morphine has helped with the pain in addition to my other narcotics. I also have been on all sorts of hormones as the pain strained my adrenal glands and several other hormone manufacturing in the body. They have brought up the hormone level. My life remains at 22-23 hours lying down in a day. I can walk 0.3 miles in 30 minutes. That is all my body can take and my arms carry a lot of the walking on the walker. This is my so called life.
To lose 3-8 pounds
Get my parents to go on a date without me
To find fun activities.
I have been part of SP since 17 March 2006. I went. By attheinlet back then when my health took a serious downturn so did my feelings. And you know the saying if you have nothing nice to say, well I was in a bad frame of mind and didn't want to pass it on so I changed my name to onbeachside and just used the trackers and kept up with only a couple folks while I figured out were life was taking me.
Since major surgery, I have had to change goals. I wish I would lose about ten pounds but I don't see it happening.
My physical activity involves a morning 30 min walk and stretches 3 times a day to prevent muscle contractures. That s what my body can only do now.
When I joined SP a few years ago as attheinlet I was burning 3700 calories a week, so this is tough not getting to eat what I want.
I am a 48 single woman with serious back and pain issues. I can walk 20-25 minutes I can't stand sitting due to increasing pain.
...and the beat goes on!
I had serious life and death surgery 23 January 2012. I have come back to walk .34 miles in 30 minutes.
It is hard to be happy to be alive when you can't do anything without the severe pain being just controlled doing nothing with high narcotics. Just knowing that the littlest extra thing will make the pain uncontrollable which means I am trapped in this life until I die.
I am only alive thanks to parents as I can't stand to cook, sit to drive, stand to shower. I am very dependent on them and believe me, it is NOT my choice.
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| June Minutes: 0
Hey sweetie! Popping in to say hello and see how you are doing. I've started seeing a new pain doc. definitely not pain free (but who expected me to be?) but we have gotten to a bit of help. How are you faring? Have they gotten you a regime that keeps you more comfortable yet? :-/ I hope so. *hugz*
478 days ago
Hey sweetie! So sorry to hear your comments :-( Did they consider interstitial cystitis in regards to the UTI? Pancreatitis? No stones but bile draining slowly... that's gallbladder not pancreas. Gallbladder issues usually hit under the right shoulder blade in the back and wrap around front. They can be excruciating! Been there, had mine out in 2009 due to 4 months of not being able to eat anything and having pain constantly! Pain with meals, especially regular to higher fat foods set it off due to bile being responsible for digesting fat. The fat molecule is all curled up on itself and unable to be digested. The bile hits it and causes the fatty acid chain to stretch out allowing you to break down the molecule and therefore digest the fat. Slow gastric motility - I have that, it's called gastroparesis. I am not sure WHY I have it, it got passed off a lot. New GI doc is investigating. So far he's discovered I also have Crohn's, which causes severe lower abdomen pain and stomach pain for me. For that stuff, i would seriously recommend finding a good GI doc who can look at everything and piece it all together. Mine has also informed me the Crohn's can cause arthritis :-) See? NOT all in my head!!! :-)
The ortho neuro stuff - is the adhesions causing the arachnoiditis? I am not very familiar with that. What I can tell you, from a pain management perspective, is that if your pain is due to inflammation, you will get better pain relief if you are taking an anti-inflammatory to decrease the inflammation. Morphine is a central nervous system acting med. It blocks the pain signals, like a mask. The anti-inflammatory will decrease the inflammation contributing to your pain, take that out and the morphine will be way more effective. Be careful with NSAIDS since you have GI issues. I can't take them anymore. I have added in Omega 3-6-9, Co Q10, and Astaxanthin supplements, in addition to a good probiotic and Kefir. I also tried a stint of Alfalfa, but be careful with that. make sure it's Non-GMO, organic, all that good stuff otherwise the plant proteins don't function properly. Also, some people have difficulty with it due to autoimmune disease and Vitamin K content (for example, my mom is on Coumadin and did not feel well on it because it increased her K intake and the Coumadin and Vitamin K have a relationship).
I am so sick of hearing about "Drug rehab" for pain patients. I saw one doc in August who flew in like a bat out of hell and get this, her response after a BS exam was, "You're too young. Narcotics aren't the answer. I wish I could help you. Sorry!" Really?!?!?! I never asked for drugs, I asked her to make my pain more tolerable. I told her if a cartwheel will make it go away, BACK UP. I'm gonna do a cartwheel right now, but it won't be pretty. So now I am at another spine doctor. HE seems awesome. My doc referred me for my lower back. i told him about my history of hyperreflexia and clonus and he stopped the exam, looked at me and said, "That's not normal at all. Especially for a low back." So I said they ruled out a cord compression 6 years ago, I have discs in my neck and thoracic, nerve issues at C6 and L5. He looked at me and said, "I need to see your scans. This might all be coming from your neck..." So I am in the waiting stage while he reviews it, but I am trying to stay hopeful and positive. My pain is consistently 7-9 every morning and the docs won't give me ANYTHING. I am stuck on 4grams of Tylenol a day and worried about my liver. I have an appointment Thursday so hopefully, the doc will take pity on me. I am bringing my mother :-) She's pissed, lol.
I know you're not a hugely spiritual person, but I will keep you in my thoughts and continue hoping you find relief and comfort. Even if you don't believe in God, what could me praying hurt? Can I add you in while I mumble at the divine? :-) *HUGZ*
596 days ago
Hi Doll! I will be keeping you in prayer.
600 days ago
717 days ago
Hello Kimberly! I haven't been on in a while, but I am trying to get back on the wagon and catch up with things this week! It's my New Years Resolution of sorts - figure out where life ran off the rails and try to get back on!
I have never forgotten about you. I wonder how you are doing. I popped over to check on you. I'm so sorry to see the new diagnosis :-( With it, do they have new ideas on how to make you more comfortable?
I haven't gotten very far with my back issues, silly US Healthcare system and all. Oddly tho, I had a GYN issue that I had surgery for, and the back pain is not as deep set as it was. Weird. Silver lining :-) I'll take whatever comes!
*hugz* and hope you have something to smile about today!
756 days ago