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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| May Minutes: 0
HI Kimberly !!
WOW hon, that sounds soooo promising to try !! I hope the Dr's in the US cn do this,,,, and that you get to try it. Sounds like as ur body fights it, you get sicker, as it's fought thu (My GS has gone thu this with a disease that only 2 in the US have,, for the life of me,, I can't think of what its called) but fortunetly he /we moved to CO and he saw a phumenulogist SP?? a lung/breathing Dr. turned out he has a very rare cond that only 2 in the US have,, its caused actually from arthritis and it attacks the spine, which becomes irratited,, SP? LOL I do not tonight care bot spelling,, can ya tell? LOL !! But once his spine is attacked,,, it bulds up fluid in his lungs,, which have,, no joking almost killed him 51 times,, this has been happening since he was 1,, he's now 22. YO !! THANKFULLY last yr they discovered the Embrel works. We are amazed of course.
I need to lay back down,,, so I'll keep this short,, for the fur bag I own,, LOL Izzy Ma Gizzahs,, a brown tiger/LeMar(A LaMar is one with almost dwarf legs,, making it very hard to JUMP UP On things,, a PERFECT cat to have !! Their fur is very thick and on the course side,, and also they ALWAYS put their paw on ur face when they are at all laid backwards). She's such a sweetie. I do love the little goober a lot.
I m now soooo hopeful that you can find something to help you out !! That'd be sooo neat !!! What are ur symptons?
721 days ago
HI hon !! I m so very sorry ur in such pain. I can relate,, for I used to be in bed 24/7. Than I started to slowly get better,, thanks to morphine,,,, and also ex strgth Tylenol and naproxen,,, the 3 of them helped,,, adding in an arthritis med,,, and actovn on my muscles. I slowly started to get up more,,, sitting up hurts a lot, but I am forcing myself to do it, til its at a pain level of 7 or 8,, than I lay back down. I am also doing yoga for beginners,, and it helps me out qiite well.
I also have just bought a massge pad,, that goes the length of the couch,,,, nd it also has a heater in it. It's quite nice ! I really like it,, and a tempedic bed,,,,, it helps ot a lot,, I did have sleep # bed, to me the temp is just as good as the sleep #. No doubtg its up to each of us.
I have gotten so I m in bed during the day prob 3 or 4 insead of 18 hrs ,,, thas a huge help for me. I comes and goes,,,,, I can rarely do tis,, but every now and than I can actually build up and go for walks ! WOW those are priceless,, I always know it will not last long,,, so I totally enjo each sep. I am graeful for ose rare times. Tis past fall,, I was able to do for about 1 monh and a half,,it used to be 3 months, but as the time goes,,, so does it. but I m still very thnnkful.
I mostlikely use a power chair,, and that's fine with me. I lso go swimming 3 times a week,, my friend is very good abot being with me. I m also thankful for tis,, its helping to stay srong.
I am having surg on the 16th on my big toe left foot,, this time its quite serious. It "could" possibly lead to an amputation,,, that'll be my 2nd one. I hope it all goes very well. I'll need to be in bed for 2 months. I have a ton of things,,, I can do ,, so I will not get bored. I do need to get help for the first 2 weeks,, as you most likely agree,, this is soo uncool. I value it now that I have privacy. before tis,, a yr ago,,, I had been with and around my fam 24/7. So to have others in w/me,, will be quite difficult.
722 days ago
I am so thankful for your friendship. You are supportive compassionate and empathic. Not to mention you give great advice
This morning I said a prayer NOT TO LOSE MY TEMPER. I called my mental health provider. I did not speak to the woman who made the mistake but to someone else. I informed them that due to a mistake in their office I have been 3 wks w no meds. Not only is my mind and body having trouble dealing with this but so is my marriage and this is totally unacceptable. I now have an appt w transportation on Tuesday @ 10:30 am
words can not express my gratitude for ur advice
760 days ago
the other day my hubby said the same thing that the pain was increasing due not having the mental meds
prayerfully they can get me an apt soon its messed up cause it was the new receptionist fault that my appt got missed so now I waiting to for an appt its been 3 weeks I've been off of my 3 meds and all at one time IS NOT A GOOD THING
how are things going for you
761 days ago
Thank you so much for the goodie. Since the weather is changing I am hoping to get back to walking outside. I think this weather has played health issues for everyone. I do hope that you are feeling better. I have you in my prayers.
766 days ago