Are you managing to work....

[johnd.h]

Guys, thanks for the responses, I am in total awe of you all in terms of your bravery and resolve. I will continue working for as long as I can, and reading about your experiences makes me even more determined to do so. Yesterday was without doubt my worst day for pain since I first had symptoms, I was a total wreck by the time I got home, and for the first time I shed a few tears in front of my poor wife. Today, is a better day so far, and so I'll make the most of it.

Warm wishes to you all, I hope it's a 'better' day for you all.

Kind regards,

John.

[Karyn]

Hi John,
I'm glad you're feeling a little bit better today! I admire your courage and resolve to continue working for as long as you can. Please reach out to us
when you are having those especially bad days. We can all relate and are ready to offer you understanding and comfort.
Warmest regards,
Karyn

[johnd.h]

Thankyou Karyn.

John.

[TracyB7777]

We are all here for you. I've found that to be the biggest benefit of this site. Hang in there!!

Tracy

[gracie]

Hi John,
I also work full time. I took short term disability after surgery for 10 weeks. I am still on meds and at first it was extremely difficult to think, but I have been on them so long that I think my brain is used to them now. I can think quite clearly at this point. Also, the biggest thing that has helped me is that my work got me a stand up work station. They actually bought 2. One for the lower level of the building and one for the 2nd floor as I have to take shifts there as well. I don't know what I would do without such a supportive supervisor I have. I have no choice but to continue to work. I am a single Mom of 2 girls. I just try to keep having a positive attitude, but we all have bad days and that is when the people here can offer support and understanding. Have you discussed any of this with your workplace? Maybe they would be willing to help. I hope you feel better soon and get some help at work somehow.
Gracie

[helenlegs 11]

Hi John, and everyone else who has posted.
I don't work. I had been on sick leave because of PN and PS but was made redundant when the company folded, so I haven't had much choice in the matter. Given my list of problems, sitting due to PN and standing, walking, and sitting because of PS,I can't think anyone would give me a job, I would never make employee of the month wouldn't last that long.
I do admire those of you who do work and I would advise everyone to stick at it as long as possible.
I have felt so guilty that I am unable to contribute financially. My husband has had to work a 6 and 7 day week.He has been a star, although even he didn't really 'get' my situation altogether. It was fine at first, I was told my soft tissue injury would get better within a year and as I don't give in easily I expected to be at least partially recovered well before that. Of course it didn't happen but with no actual diagnosis things were financially and emotionally strained. Getting that diagnosis helped.
Not financially unfortunately. I have been refused every benifit applied for. I have a tribunal in January, nearly 3 years since the onset of my symptoms, where I can "state my case". I have tried to do just this every medical and interview I have had but they have simply ignored all PS or PN documentation I have submitted to them. Just because it is rare there is no reason to be rude! I can not wait for the tribunal. I am allowed a representative but who? It would take me all of my time explaining it to someone else, it might as well be me.
Because my husband does work I was told that I was a housewife . . . Oh to be a lady who lunched,be able to sit through a hair appointment and then have my exquisitely manacured nails re sharpened so I could poke them in the eye. . . . .
I have just read a post on a different thread by Catherine and I hope she won't mind if I quote her here but it is relevant . . . . . . .

My advice to anyone is: Don't give up. inform your doctors of this website. if they don't listen find one who will. Keep moving. don't overdo things, Rest when you can, Fight against depression. Find a good pelvic floor physiotherapist. Ignore negative comments from others. Keep working if you're able. Even if it's part time. Approach your HR dept. and ask to speak with a Health & Safety Rep. I'm fortunate to work for a large company who value me as an employee. They allowed me to have as much time off work as I needed. I ended up being away for 2 years. I was then allowed to come back to work at my own pace. 1 hour then 2 hours etc. If you can't work, apply for Disability payments. If you're refused, try again. Get as many medical letters as you can from your doctors to support your claim. Don't waste time going to Doctors who know nothing about PN. Go straight to the docs. who do know. It will save you a lot of time, effort and money.

She is so right ,it is very easy to fall into the pit of self pity. We have quite a lot to feel sorry about but the distraction of work can be a saviour if it can be tolerated. Finding a diagnosis and then treatment can be a job in itself. Especially being extreeemly thick now with the fug of er, em, what's the word again. . . oh yes medacashun . My distraction is my Mam. She has late stage Altzheimers and still lives at home with my dad.I go 3-4 times a week, and I know that we would not be able to have her at home if I worked, even part time. She would not survive well in a care home so my enforced unemployability has advantages.
Oh and Tracy, I have not heard anyone mention swollen ankles before but I get them too. I have put this down to piriformis, not sure you suffer from this but my ankles swell in direct corellation to the sciatic pain build up associated with PS.I have this bilaterally but the rh side is worst and that side ankle is the fattest too. I know, thick head, fat ankles . . .attractive !
Take care everyone,
Helen.

[TracyB7777]

Helen, everything you are saying makes sense. I don't understand why we are not believed simply because this is a rare thing. Very frustrating. I'm not a very forceful person when it comes to my doctor visits but that is changing. I felt I had to give the dr's down here a chance but I'm placing the call for an appointment with Hibner. My family is willing to drive me up (I only live a little over 2 hours away). My neurologist didn't even want to test the Pudendal nerve when he ordered the SSEP, I had to insist. Now when I go back to him in December I'm going to insist on the MRN. It's just plain crazy to not do the testing that we all know would help with the diagnosis.

I don't know much about piriformis. I do know I have issues with my sciatic nerve on the left but it's my right ankle that gets fat. Yes I too have the fat head and fat ankle.

Working truly is my distraction; especially since one of my adorable co-workers is suddenly available. But this pain leaves me hesitant to show my interest. I've been reading everyone's postings and they leave me scared to start a relationship. I do appreciate all of the information that everyone here is posting though. Because of your experience I'm becoming a better, stronger patient, that will get the diagnosis quicker because of all of you. I too hope to be the inspiration for future patients who sadly, experience this. By banning together we can educate those around us including the medical community!!

I hope everyone has a fabulous weekend!!!

Tracy

[Charlie]

My family is willing to drive me up (I only live a little over 2 hours away). My neurologist didn't even want to test the Pudendal nerve when he ordered the SSEP, I had to insist. Now when I go back to him in December I'm going to insist on the MRN.

Tracy

What Neurologist did you see Tracey?

[TracyB7777]

Dr. Bamford in Tucson.

[MsRivers]

Hello All,

I worked as an administrative assistant for two years before I had to go on short-term, then long-term disability. I worked in pain, mostly standing up but because my foot pain became so bad I had to stop. I'm home, having physical therapy twice a month. That's all I can afford for now until the long-term disability kicks in.

I fought to keep working for so long and didn't want to label myself as a failure. I've always worked and throwing in the towel was not my first choice. I had to increase my medication to so much that it did begin affecting my memory and ability to process basic information.

I'm blessed that my husband also contributes to our income however, we had to drop medical insurance. All of my care is self-pay now. Putting the pain aside, the hardest thing for me is finding a sense of purpose. We as a society, tend to get our self worth in what we do for a living. I'm blessed to have two hobbies, painting and making jewelry. I can't do either of them very much these days because both require prolonged sitting or standing. I guess we have to focus on what we have left of our former lives, what we can do, and what we can contriibute. I wish I was well enough to volunteer. If I could, I guess I could work I'd visit nursing homes or assisted living facilities and just visit with the old folks. I have a new appreciation for who they are now. Sorry for any tyos. I have to type on my side or laying down.