Quite Frustrated...

[SilentSong101]

Sometimes I feel like the only thing I do on here is complain :P ...but sometimes you just need some people who understand what is going on.

So I am over a month post op - doing great - the weather has been changing multiple times a day for the last month that its hard to tell how symptoms have changed. However, I'm off pain killers and feeling like I am slowly wanting to start getting back to life - taking it easy of course but I want to do things. I've been able to go paint pottery, take walks, painting, guitar, worship nights with friends, hanging out with friends...

I was told you make a follow up appointment 4-6 weeks after surgery - and after getting home I phoned to book an appointment. Fine by me. So I get home, phone and try to book an appointment, at which point I am told it is too far in advance to book right now, but I will be called with a day in the next couple weeks. Ok, great - these people have always been good at calling me and getting me in within a week of them calling me. But over four weeks pass...and I still haven't heard anything...so I decide to give them another call. At which point she says "Oh yes, you've been on my radar. Now we're not booking you until you have your MRI, I saw the date come across my desk - but it wasn't until the summer."

Okay...I'm a little frustrated here, because they said 4-6 weeks....and now it will be more than that. But being the patient passive person I am I decide to let it go and thinking it will probably be some time in July or early August, I let it go.

Fast forward to today...I get a letter in the mail with my MRI information...guess when it is....August 24th....yes...August 24th. I'm extremely frustrated - over three months post op and I will not have yet had a follow up. Also the time when I was told I would be able to get back to my sports (which some of which I feel like I can do now...but Im not)

I dont know when I can do ANYTHING....AT ALL.

I dont know when I can go back to work (they said "probably a month, well let you know at the follow up - book it 4-6 weeks from now)
I don't know when I can start driving again (yeah....)
I don't know when I can strain at all (i.e. - push something out of the way, or walk the dog cause he sometimes pulls)
I dont know if I can ride a bike, stationary or not
I don't know if I can hop or run (I don't mean to do this --- it happens on impulse and it is very hard not to do it)
I don't know when I can carry more than 5 lbs (I've broken this rule already...could not resist babies...and it didn't strain/pressure at all and I had him for more than an hour (much of it sitting))

It is summer - and while I understand that I may not be wake boarding or canoeing or climbing this summer....I would like to know if I can do the little things like swimming, or light hikes or go on a road trip with friends. I want to go to my yoga class (it is a participate as you can class, if you need to lay down or not do certain things, you lay down or do not do certain things).

I'd also like to know if I can run to a bus stop (though it probably hurt) without risking bursting something in my head...

I'd also like to mention that the 24th of august just happens to be when I'm meant to be on Vacation. Meaning that in the last three years every single MRI I have had booked has had to be rescheduled because I'm in a different place. First it was BC, then New York, then it was Africa, then it was BC and I think Haiti (maybe...can't remember that one). I only travel a couple weeks a year - It's just ridiculous. If I can't make it to that it will probably take 3 more months to get another MRI....which means waiting 6 months for a follow up....umm...

That is just stupid and ridiculous.

Guys - I am so frustrated right now (I seem to be more in touch with my emotions, especially anger since surgery..I never felt anger before I had it....weird right?)

Just  - yeah.

[selmaS]

  I also had the sleep issue too...and it took time b4 I really slept again....I would lay  there all night and fall asleep netime b4 4 AM....it is not good....

I was given diff meds to help, which they did not....but once I got on probiotics I did start to sleep better...not sure if that was the ticket that will help u, but all those meds really mess us up.

Convenience, what is that? sorry but it is over 3 yrs that I have not driven and it is driving me crazy too....but it is my vision and depth perception that keeps me from being behind the wheel.

As I said u r young u might be able to start doing some things....but I would move forward slowly and take note to how it affects u or not.,....and go from there....no walking a dog if they pull....wait on that, do not lift more than a gallon of milk....and do not carry nething up steps....or down....give urself time with things like that...

Ask to be placed on a cancellation list, get that MRI asap so u can get in and see him ....

My DH would take me out for walks post op, and I did sleep on the days I got out....but  on the days I did not get out I would just watch time tick by....

take a deep breath and try and get on that cancellation list.....good luck

[SilentSong101]

Yes, I got my staples out but they sent me to a special nurse - did not see my dr for that...

part of my frustration is - I am not sleeping well - at all because I just need to be active - pre surgery i could be only my feet 8 hours a day, sit down for half an hour and have to be moving again...I just need to move...the lack of sleep is not good for a) healing or b) just life...

but I dont know...I cant sleep cause I cant function and I cant function cause I can't sleep...its awful.

I really am trying to be patient...but I have not talked to my doctor post op, except once (that I remember....oh boy...)...so many questions...Im worried I'll hurt myself by adding to much - but in some ways its becoming a need. I can't not work till the appointment - especially if it ends up becoming 6 months....I cant not drive for that long either - I don't usually drive because of my eyes - but it is becoming a need rather than a convenience....I am going to try and phone my Dr. and see if I can talk to them, get some questions answered, even if its not the official follow up.

[selmaS]

  Hi, I know what u r going thru, I really do...and it is not easy to have everything on hold and then get put off.

Now for ur post op visit, did u have one to have stitches out? Ur Dr should have talked to u then about some of these things...and a month post op, is a bit soon for bikes as most u lean on the handle bars and it is strain on the shoulders and neck.....u may want to try a recumbent bike if u have one available.

And the anger issue, not really so weird.....I found it an emotional roller coaster post op...and that is due in part to the compression of the brain stem and nerves that happens with this condition.

U r much younger than myself and u may not have all the same issues I have, but I would encourage u to be patient and go slow...

Gradually add on to what u do and see how u feel afterward...be advised it is usually 3 months post op that many tend to feel some symptoms resurface.....so u r in that b4 stage ....

Also keep in mind many of us go thru stages when we r dx'd and during recovery....anger is one of the symptoms, denial, grief and acceptance....