So frustrated

[lauralynn]

Hello my AN friends, I haven't been on the site in forever coz since my surgery my financial situation has been awful and I lost my internet connection.  Fortunately I am able to get online at work.  The reason for my frustration is, I don't feel well EVERYDAY.  My energy level is way lower than I would like.  I went back to work Full time in November and it is just exhausting me.  I can't afford to not work...but some days i feel like someone w/ my health issues should not be working.  It's a struggle everyday.  I was wondering if anyone who had a large ( or as my doctor calls my tumor "enormous") tumor could respond and let me know how it was for you after surgery.  Just want to know if what I am going through is similar to what they may have gone through.  Don't get me wrong, I am a fighter....but somedays can really be a struggle.  Look forward to your responses.

Your AN friend,

Laura Magin

[leapyrtwins]

Laura -

have you looked into disability?  There are several forumites who applied for disability and received it.  I know Capt. Deb is one, LA David is another, and there are others I can't recall.  Search on "disability".

Jan

[Pooter]

Laura,

Glad you're back with us.. I'm sorry about the other situations in your life that are causing you additional angst.  While my tumor was a little bit smaller than yours, I still struggle with fatigue.  My stamina isn't what it used to be.  Prior to surgery, I'd be able to operate and be just fine on 3-4 hours of sleep.  Now, if I don't get 8 pretty good hours of sleep then I'm tired all day.  I haven't yet figured out the trick to getting my stamina back, but I suspect it's like building muscles in that the longer you push yourself, then the overall stronger you'll be..  I'm not sure if that's true, but until I know something differently I'm going with that approach and hopefully slowly building my stamina back up.

I'm confident, as we always say around here, that everyone's reaction to major surgery is a little bit different.  No doubt, there are those out there that are full of stamina (heck, we've had several run marathons a few months after surgery) while others struggle with it greatly.  All you can do is try to slowly build it back up and make some modifications in your daily routine to lessen it as much as possible.

Keep your head up and hopefully it will get better with time..

Regards,
Brian

[Jim Scott]

Hi, Laura ~

I'm sorry to learn of your post-op struggles.  I had a 4.5 cm AN debulked then radiated and like you, I experienced some fatigue afterward.  Fortunately, I was retired at the time of my surgery and didn't have to deal with work issues, as you do.  In most cases, the fatigue resolves as your body gets stronger - but that is not a guarantee.  In the months immediately post-op, I attributed some of my noticeable loss of stamina to age (I was 63), but I have to assume that with the brain working hard to compensate for my SSD and loss of one vestibular nerve as well as the trauma of major surgery, there wasn't a whole lot of physical reserves to spare.  This is likely what's happening in your case.  It is certainly not uncommon.  

Jan's suggestion about applying for Social Security disability benefits is sound but it can be an arduous process.  I know this because my wife went through it (successfully) in 1996, when it was actually a bit less difficult to be 'awarded' disability benefits.   She had to retain an attorney specializing in Social Security law and, specifically, in obtaining disability benefits.  Fortunately, he worked on a contingency basis and she paid very little to him 'out of pocket'.  If working is proving difficult and impeding your recovery, you should look into applying for Social Security disability benefits.  However, this is a decision only you can make.

Jim

[epc1970]

Hi Laura
My AN was about the same size as yours and I had similar issues  for a number of months post op. I would go to work at my desk job and literally have to go straight to bed when I got home from work just so I could function enough the next day at work to keep my job. In fact, I barely remember those months! I still have to be careful not to over schedule myself or I end up having one of those "bad days" and get wiped out and have  a massive headache. I have had to acheive a new form af balance in my life with rest being #1 when I need it.  I fully understand where you are comming from-I'm still not too sure how I made it thru those first few months. But know this: it will get better-it is very gradual and you have to proiritze getting rest over other things if possible. I don't have many practical suggestions except to be good to yourself-get rest, eat heathly, get some light exercise etc and it will come together. Good luck Laura-don't let thing darn thing beat you!
Erin

[sues1953]

Hi Laura,

Wow! You are nine months post opp and it's not so encouraging for me to hear, being that I was just diagnosed a month ago.  I have a 3.2 cm An and I'm 56 years old.  I'm in good shape physically and really hoping that I fly through this surgery.  I will be having the same surgery that you had on March 15 (unless I can get info on something better).  What is your age?  Not so many people let you know their age and that is so important as to the recuperation time.  I'm am betting that you are younger than I am.  I just want to have some peace here that I am doing the right thing with the translab which will cost me my hearing in that ear.  I will be having surgery in MI by Dr LaRouere, Michigan Ear Institute.  I have very few symptoms now and I was very lucky to have been diagnosed so quickly.  Anyway sorry to hear that you are not doing as well as I'm sure you had hoped.  I am so grateful for this avenue to vent, you all understand like no one else can.  Thanks and my prayers are with you.   Susan

[suboo73]

Lauralynn,

So sorry you are feeling so poorly at this point... 
I think Erin had some good thoughts, especially prioritizing rest.
I looked back and realized you are a busy mom with several teenagers, as well as trying to work. - WOW
**I love my kids, but sometimes i have to remind them to help me (and i do like to do things by myself, my way.) But i have learned to let others help.**

One recent thing i have also learned is low Vitamin D will contribute to fatigue.
When i have time, i try to read the posts about others and how they take supplements for healthy living.
Perhaps others will chime in with additional ideas to increase stamina.

Please accept my prayers for additional strength during this time.
Sincerely,
Sue

[epc1970]

Hi Laura
Like Sue, I take Vitamin D and I take a B Complex vitamin. B viatmins are essential for brain and nerve health and help energy.
Erin

[Lilan]

(I'm taking B complex too.)

The way you feel now is how I felt before surgery. I was so dizzy I could barely push myself through the workday, then come home and collapse. Every day. In addition to feeling physically awful, it's emotionally draining because you don't have the energy to do any of the fun things that normally add spice to life!

I did want to ask if you've seen a primary care doctor for a checkup since your surgery? Fatigue is normal after surgery, but you might want to rule out other possible causes that may be contributing, be it thyroid, iron deficiency or other common things in women. Just an additional possibility.

[lauralynn]

Thank you all!

Thank you all so much for your prayers and encouraging words.  I know I will feel better and stronger some day....will want to celebrate that when it happens!  i will pop in when i can.  I'm going to continue working for now...don't think I could survive on disability.....doing OT now nad it's exhausting but the paycheck is nice.  So for now, I will continue to take one day at a time and I will keep you all updated on my progress.  Thank you for always being there.

Your AN friend,

Laura Lynn

[suboo73]

Laura Lynn,

At my last ENT visit, one of his well-meaning residents tried to convince me to have surgery.
Ok - i did not ask for this information at all, so i was alittle miffed - he didn't ask what I MIGHT want!
Maybe i will need surgery one day, so i continue to read on the Forum.
And i most certainly ADMIRE and RESPECT those of you who have HAD to choose this option/or decided on surgery as the best option.

My point here - i was SO MIFFED, i wrote a LONG e-mail to my ENT explaining what happened (he did not know), and told him i come to the Forum for support and HOPE.
He said he passed around my e-mail to ALL his residents and encouraged them to go read on the AN Forum.
I hope he did this - they need to know how we feel.

STAY STRONG!
Blessing and prayers ALL AROUND for better days.

Sincerely,
Sue

[Keri]

Hi Laura Lynn,
I was wondering about how you were doing the other day too. I haven't been on the forum as much  but I don't want to lose track of everyone either.
I hope you're able to get good rest when you can. I remember you having a child but didn't realize 3 teenagers! That can be challenging but they can be a help too, and I hope they are.
We'll pray for you - keep us updated when you can.
Oh, and my forum picture did what your's did. I went to photobucket and all i had to do was log in (and i probably had forgotten my password/login but i guess they emailed it to me). As soon as i did that, my picture came back. I didn't have to re import it or anything like that.
take care,
keri

[msmaggie]

 Even though you are nine months out, you are still recuperating.  I am a year out, and I am still careful not to get over tired.  Vitamins and 8 hours of sleep are the only way to go.  I work full time, and by the end of the day I have run out of steam.  You wil make it! Don't try to compare what you used to do with what you are able to do now.  That wil just defeat your efforts to move forward.  Hang in there!

Priscilla