It's been a while since my last post when I was just about to return to work at the beginning of February.

It was really hard going back to work since I am an assistant store manager at a big box retailer, which requires being on your feet for most of your 9 hour shift. When I first got back it was a real struggle to walk from the front of the building back to the office. I had to hold onto tables and fixtures as I walked and I found it very hard to catch my breath. My restrictions when I got back were to walk for only 15 minutes at a time max every hour or so and to be doing mostly sitting work. Well...there really isn't any sitting work besides doing schedules which my boss doesn't want to take away from the woman who does them.

I spoke to my boss about my committment to the job and the fact that I really wanted to just do my job, but that I needed her support to allow me to manage my areas in a different way than I used to because of my walking limitations. That led to some unpleasantness and a conference call for HR that was very nasty because they gave me my job description and asked if I could do the things on there. I said I could because my job is to oversee things, not to be doing them necessarily (although I had always done them in the past before my injury last July and being diagnosed with RSD in December). They said they didn't think so and that they would not support my creating a new way to manage my areas that did not fit in the company culture. I was ripped to shreds because I took a stand and said that I want to do my job (and by the way...even with my limitations I maintained the highest sales numbers in my areas in the district for the past 7 months and I was only off for the month of January). And I told them that it was not fair that they dictate HOW I accomplish my job as long as I did it with integrity and produced results.

But despite this, I pushed myself every day to do more and more. I challenged myself to walk for longer periods of time and to take less time in between the walking. I had to go to physical therapy (PT) 3 days a week and I was working 45-50 hours a week. Every day I do my PT exercises at home whether I have PT or not. The pain has not improved, but functionally I am walking better now and pushing through the pain.

This is the hardest thing that I have had to do in my life. I do not remember what it is like to NOT be in pain. Wearing a sock HURTS...cold air HURTS...wearing gym shoes is IMPOSSIBLE. I bought myself a pair of Mary Jane style shoes with a velcro strap that does not hit me where the pain is the worst and leaves the rest of the area open from any sort of pressure that I would get with a normal shoe. They have been a huge part of my ability to push through the pain. The hardest part every day is getting up. I don't sleep very much at all...but I find myself laying there for hours and hours not moving because the pain just sucks. I feel like every day I have to psych myself into getting up by saying/thinking to myself that I am 26 years old and I am NOT going to let this ruin me...I am not going to let myself be disabled because of the pain...I have too many things that I still want to do in my life to let this pain beat me. EVERY day I have to do this...sometimes several times a day.

But last week I went to the doctor and asked him to take me off work restrictions and I am down to one day of PT a week now until the end of the month and then I will be transitioned into a home program...which I am essentially doing anyway. I no longer have to hold onto things while I walk. I am now walking at an almost normal speed and my walking is getting so much better. I no longer have to concentrate every single step to make sure that I walk "normal". And it HURTS...but I am doing it.

Oh...and I have gained a bunch of weight from the medications that I am on...the Lyrica I think is the main culprit. So I had to buy a bunch of new clothes because my 00P pants are just a wee bit tight on me...lol! But I am looking at this in a positive light because I was actually able to buy some clothes from the misses department instead of juniors and that feels great even if I had to go up a couple sizes because of the weight gain. I now feel better in the clothes that I am wearing. But...guess what? The shopping...HURTS.

But yesterday I had a GREAT day and I felt GOOD. I worked in the shoe department rearranging the floor and making space for the new styles that just came in. I have always LOVED working in shoes since I used to be just a supervisor in the shoe department and I ran the best department in the region. I came home from work and told my boyfriend that I got to "play" in shoes...because that is how I think of it...I enjoy it THAT much. And I also got to put out new stock in kids and help the girl who was also putting out stock in the department make space and move things around. And it HURT...but mentally and emotionally I felt like ME...for the first time in a long time I was ME...doing something that I love, using my brain, and being normal. Everyone at work noticed the bounce in my step (not literally because I could never handle that with the pain...but just that extra energy in the way I was talking and the mood that I was in). And inside a part of me wanted to curl up in a corner and just cry from the pain...but a greater part of me was overjoyed at the feeling of being normal. Does this make sense to anyone?

I don't know if I will be able to do this day in and day out...every day will be and is a struggle. But the "high" from yesterday is still with me (admittedly I have the day off today and have been able to rest). I just felt like sharing this with people...because it is just so awesome. I hate the idea that I will have to live with this absolutely unbelievable pain for the rest of my life, but I have committed myself to this idea that I will not let it ruin my life. There are things that I used to do that will never be within my reach...and I will have to make some serious adjustments to do things that used to be so easy. I bring a heating pad to work with me every day and use it while I am on break at work...I never used to take breaks but now I HAVE to so that I can get some relief. I get some really nice shoes for Christmas that I don't think I will ever be able to wear because they put too much pressure on my ankle that I cannot stop the tears that come as soon as I put them on...and I have always been a jeans and gym shoes sort of girl.

I know that in reality I will have days where it is all too much and I'm not sure how I will cope with those. But TODAY...despite the unrelenting pain...I feel GOOD because I finally feel like ME...and that hasn't happened in so long that I forgot how good it could feel.

Dear Catra121,

Thanks for taking the time to write so eloquently and in such detail how you are coping at work and how determined and strong you are in your positive attitude! You are an inspiration and I am in such admiration of you for taking it one day at a time!

RSD is treacherous but lower limb RSD dictates our mobility and the limitations are many. It is truly amazing how you are approaching this head-on and pushing yourself to the limit and beyond, daily..

You speak for so many of us when you talk about the happiness of feeling like your "self" and re-discovering the joy and satisfaction in your life.....

i, too, work full time, with 70% desk work and the other 30% up and about with various tasks... The pain is there 24/7, sometimes to the point where I can't concentrate..even elevating my leg under the desk doesn't curtail the swelling, the redness, burn, and mechanical pain. There is much I can no longer do regarding my job, not to mention life in general...I, too, miss my 'self..'

I am amazed by the challenge you are confronted with daily, having to walk throughout a huge retail store, and carry on despite the pain.
Do you take pain meds or other medication to help?

You are my hero for persevering...I pray that you can continue to find more mobility, but with less pain...and to take care of yourself as much as possible! I hope you can find balance in the pain you experience with much rest and support from your workmates, friends, and family...

Please keep us posted when you have time as to how you are doing in weeks ahead!

Your admirer!!!!!
Hope4thebest xoxoxo

Wow - what an inspiring story!! You are awesome!

How can you fix it so you can sleep more? Have you considered sleep meds? I have taken Ambien CR 12.5 mg and Skelaxin 800 mg at night since last summer, and I can fall asleep. I still wake up a lot, but I can get back to sleep again. Restorative sleep may help reduce your pain somewhat. If your meds aren't covered by insurance, then how about tylenol PM or a generic equivalent? Just a thought.....my heart goes out to you having to work so hard and being sleep deprived!

Thanks so much for taking the time to share your story with us. I am so concerned about my ability to return to work and perform my duties - it has been my goal since I started my LOA to get better. You have enabled me to see that with some grit and determination it is indeed attainable!

XOXO Sandy

Don't go spending extra $$'s on Tylenol PM or Anything PM for that matter. The active ingredient for sleep in them is the same active ingredient in Benadryl which is the same ingredient in the store's generic brand of benadryl too. Usually the first line of sleep aide that a doctor will suggest is Benadryl, or it should be anyway. And that would be to start one out at 50 mgs of it, 2 pills up to 100 mg at bedtime. It use to work for me like a dream. If you buy the name brand PM stuff you are throwing away good $$'s that none of us can afford to throw away anymore. This is what my doctor told me years ago.

And if you were able to push past lower limb RSD good for you!! I too have it, in both feet unfortunately. Burning pain Started 11/03. LGB;s were of no help. For the last 6 yrs major pain meds & high dose gabapentin, & SGB's for upper body (hands) spread are what help me the most. Am going to be looking into where I can get ladocaine infusions next as I am getting full surface body (skin) burns now starting on my head & ears gradually taking in my whole head & upper body & lower if I don't take BTP meds & extra gabapentin. The ladocaine infusions are suggestions by people here on this website. I never even thought of those until they were suggested & thanking one & all who has suggested them.

One way in 03/04 I was able to continue working for 6 months was by using am electric scooter. I was absolutely unable to walk but I had to continue working atleast until I could obtain my full benefits at work. I had just changed jobs, unfortunately, when this hit me. Had no idea that this was on my horizon. Anyway my health insurance paid for 6 months of rental on a scooter, then bought me one & eventually an electric wheel chair also. I had a script from my doctor & my job was all office work. I worked in a county office in the welfare department. I was able to do my job, just not walk & the scooter was ok with my work. They have to accomodate one as much as is possible as long as you are able to do the job with the accomodations. I know you are doing it now with being able to walk, BUT if you get where you can't walk but can still work, even thru the pain, you might look into your doctor prescribing you a scooter or electric wheel chair. (I have both & like I said, with a script from my doctor my health insurance & documentation from my doctors they paid for them both, with no hassle). I had Blue Shield of CA at the time thru work) One website you might want to look into that is the most helpful with job accomodation & how exactly to request them is the JAN Network (Job Accomodation Network)

http://www.jan.wvu.edu/

If you need to speak to a rep they will call you back when you leave a message as to why you need to speak with them They are really great. I used them alot when working at different times. They are the most helpful & are backed by the ADA.

Good luck!!

Debby

Gotta share my motto...

Life is not about waiting for the storm to pass...Life is about learning to dance in the rain......

I know all feel sad at times..but in my heart..I am much like our happy poster here..I am the most blessed RSD'er around..cuz my heart is full of love and RSD ain't getting in at that!!!!Even tho I can't work anymore..I still feel loved and lucky!

Love to my friends..Kathy

That is wonderful for you, and I really appreciate your sharing it! I know the feeling of hurting too much to shop. Never thought I'd say that LOL. Yours is an inspiring story, and it was really great that you took the time to write it out. Thanks!

Let's see...I am take 4 medications: Lyrica, Tramadol, Meloxicam, and Doxepin. I know one is an NSAID and the others are for the pain. The doc upped the dose of Lyrica from 150MG a day to 225MG and I definitely saw a little improvement (not a lot...but a little) from that. I also have Lidoderm patches which help a little.

As for sleep...I will try the Benadryl. Part of my problem is my work schedule. It's not uncommon for me to close the building and then be back to open the next day and I never would have a "regular" sleep schedule with retail hours, so I have always been afraid of taking stuff to sleep because what if it works too well and I don't get up for work. But I'll try the Benadryl on nights when I don't have to be up early and I will see how it affects me. Thanks for the suggestions.

I have to say that this week has been hard. A week after being back to "regular" work and I feel like someone beat the crap out of me. But I just grit my teeth and keep moving because I know the alternative is NOT what I want. I am really hoping that getting the TENS unit will help a lot. I used a wheelchair and crutches for a couple of months while trying to get a diagnosis and unless I just cannot do it any more I don't want to go that route because...well...it will be a heck of a lot harder to be "normal" and "myself" in a wheelchair or scooter. But I am also a realist an know that someday I may not have a choice in the matter. But I want to put that off as long as possible.

Thanks again for all the kind posts. Hope4thebest...thanks for your support and for the prayers. I know I will need them. And I love that saying Kathy. I run a cross stitch board online and we are trying to create a stitched chart with that saying on it, "Live isn't about how to survive the storm, but how to dance in the rain." How funny that you would post that hear. Really is the truth though.

I pray that everyone with this terrible, awful condition gets the support and love they need to continue on. If I didn't know that there were others struggling with what I am and know their stories...I don't think that I could do what I do each day. I am a stubborn little runt, though, and I just am determined not to give in. Big hugs to everyone!

Oh...and thanks for the link and info Debby! If I need it I will definitely check it out.

i am currently working as well.. I am not allowed to work full time.. Drs wont allow it.. but i am not willing to give up.. mine is in left arm.. possibly down spine at this point..(not sure)With your fighting strenght, you dont make me feel so foolish, about not willing to just lay down and not give in to the disability and quit working.. I am fighting the drs. originally, they said 4 hours a day. I said that dont work for me.. so she changed it.. i had to fight her for it..lol..im not willing to just sit back and draw ssi. I am only 35. im not old enough to draw and do nothing. I am bored now. and i work part time.. so with what you wrote. your fight and determination, i know that i can continue to work as long as physically possible.. so Thank you..Its not a wasted effort. I just get so tired of fighting everyone on everything. It seems i have to fight for everything that makes me feel better about myself.. Does that sound dumb? Regardless. You are a hero in your own right.. You should be commended!! congrats! I just wish you didnt have to suffer to do it..Maybe you can get your meds upped or get something to help you sleep.. I really think your job has to accommadate you..legally they do..

Hi Catra,
I wanted to support Debby's idea of getting a little electric (battery run) scooter..

I also work full time...I have RSD in my left foot/lower limb with mirror spread to my right foot..

At this point, I have great difficulty and pain walking more than 50 yards....or less..
It took a great deal of effort and letter-writing, etc to WC for them to finally authorize the purchase of a scooter ( a little 4-wheeler), as well as an automatic scooter lift for my car. Their plan was to issue me a manual wheel chair..............

The scooter has made a huge difference in my life, even though I didn't want to admit to myself that I was stuck and immobilized without one, and had reached the point of needing a scooter....the reality of my condition came to the fore when I realized I simply couldn't go anywhere!!
I can go for "walks" now, to a museum, or for a stroll along a paved path by the ocean...

Last week I found an additional scooter online (used) for $300 which I bought .. I leave this one parked near my desk at work (it's a 3-wheeler) so that I can navigate the long corridors or attend meetings on the other side of the building, etc. as needed..

You can view the type of scooter by googling GoGo Elite...it is manufactured by Pride

I am still working on re-defining my eternal identity, as I used to hike the coastal mountains in Northern California...

My internal identity, on the otherhand, is somehow being fortified, by learning to be patient, and trying to accept the changes, moment by moment..
Easier said than done...

I am concerned that you are exhausting yourself and are in such pain.....
I feel it vicariously!
Take good care!
Hope4thebest xoxox