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281565 tn?1295982683

Getting that I can't do this anymore

Yes a pity party for one. I have been lurking and try to post responses when I can but right now I seem to be in a low spot. Too much seems to be going on with me and for what ever reason, I am finding it hard to cope.

I read how many limbo landers are frustrated and I so understand that feeling. I finally got bumped to probable MS and there I sit waiting again. I have tried calling the neuro again to see about the appointment he was to set up 5 weeks ago, with a MS specialist and all I seem to be getting is the answering machine. I fought over 2 years with an ego manic MS neuro before and got no where and finally when I got validation that this was a neurological problem, and he was pretty sure I would be diagnosed MS, I seem to be sitting here waiting once again.

I just don't know if I can keep doing this anymore. I'm tired. I'm tired of fighting a fight that I can't seem to win at this point. I've been proactive, I've done all that I could, but I don't even have a family doctor anymore to try to help. Not that the one I had was doing much. So, I'm not sure where my head is at right now. Rambling I know.

Wishing and praying you are all well.
Moki
12 Responses
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Avatar universal
ELT
   I have no brownie, but, how about a margarita.  I had to try out my new fridges ice crusher. LOL  

   Thanks, for understanding, :)

  Erica
Helpful - 0
281565 tn?1295982683
Wow, I am in such awe over you all. You have all made me cry once again but at least this time it was a happy cry. I thank you all for the support you have given me here. I have a lot to work out in myself but I do know that with all the support here that I will get through it. A special friend has taken the time today to help me in this and I feel that although I am still sad and mad over all this, that I am still willing to fight. I think the frustration and pile up of health issues and other stuff just got a little overwhelming for me.

This forum is such an incredible place and I cannot say that enough. We can hide away for a while but the need to come back is so strong that one cannot resist. I am glad for that. As I have said before that although I have not been posting much, I do read and try to keep up with everyone. I have no desire to leave and never did have. I have gained so much information, and so many friends here that leaving is not an option for me. I just was feeling low and knew that so many others were having the same problems and did not want to add to the mix until today. I knew that if I did not come here today, the possibility of going down that dark road was all too real.

Erica, you sweet lady, I know you meant well and I did take it that way. Please don't be sorry, there is nothing to be sorry about. I would gladly chug a beer with you any day.

Zilla, I have been reading your posts and I too just did not know what to say to you. Yes this limbo land does suck. Do know that I have had you in my thoughts and I do believe that we will both come out of this yet. As for the swinging door, well so long as it doesn't hit me in the butt. haha

SL, thank you for taking the time to respond. It seems a lot of us are having things going on that are getting hard to deal with. It can feel like things are so overwhelming and I am so thankful for my cyber family. You do know that we all love you too right? I will pray for us all to find some peace again in our lives.

Momma Bear, you do have a way of making me chuckle. I have emailed the doctor who helped me find this new neuro and explained everything that has been going on just a little while ago, but I will also write a letter to the neuro himself. Thank you for that idea, I never even thought of it. I'm just so tired of waiting again but I know that I will have to for the time being. As for the job, yes I know that the decision is the right one and yes I am grieving over it. I have worked hard and am good at what I do and other than these stupid health issues, would have been darn good at it. Oh well, life moves on.

So no road trip eh?haha Ya our lane is a nightmare in the winter. If the snow is going to land anywhere, it's in our lane. Mmmmmmmmm warm brownies, tempting. Oh and thanks for the kitty whops.lol

Heather, dearest lady, we have already spoke, but once again I would like to say thank you.

I love you all
Hugs
Moki
Helpful - 0
147426 tn?1317265632
This is from Momma Bear.  I'm going to be a little bit stern here.  You are getting what I call Kitty Whops.  Now you have to understand that I used to have a little kitten who was totally full of herself.  When she was tiny we also had a chocolate lab.  Whenever the kitten would come across the dog, she would do this little baby hiss.  Then she would stretch waaay up on her back legs and swat the dog across her muzzle 6 or 7 times with her tiny paws - Whop whop whop whop whop whop!  Like lightening.  Then she would scamper off.  The dog looked mystified, "WTF??!"  These are kitty whops.

Okay, now that you are whopped and I have your attention.  Of course, it seems too much.  You're exhausted from the pain in your neck, and despairing because what seemed like a ticket out of H*ll isn't materializing.

The new neuro seems to have dropped the ball.  This happens.  But, I still believe he understood the problem and means to help you.  Means (present tense).  The worst way in the world to get a message across to many doctors is through a phone message.  That depends on a front desk to transcribe and get to the doctor.  They may or may not do it, or it may get garbled in the process.  Asking for a doctor to call you back is often like asking them to pull one of their own molars.

There are better ways to get exactly what you need through to him.

I want you to write him a letter.  Mail or hand deliver it and ask that it be attached to your file.  It could go something like this:

Dear Dr. McWonderful,

     You kindly saw me on an urgent basis, a month ago on January XX, 2008.  As you might remember I have had neurological symptoms for XX years.  At that time you felt that MS was a distinct possiblility and wanted me to see a specific MS Specialist.  You said your office would make the referral and appointment.  I was so relieved to have someone take me seriously!  Thank you.

    The problem is that I have not received the appointment yet.  I have left messages on your office answering machine, but do not know if you have received them.  I am having a great deal of pain and spasms.   My current GP just passed away, and I am without anyone to help treat my symptoms.  My employer is also losing patience with me because I cannot furnish them with a diagnosis.  Would you be able to go ahead and make that referral and have your front desk or scheduler make the appointment?  If they would call me after they make the appointment I would really appreciate it.

Again, my visit with you gave me hope for the first time in a long while, that I might finally get some answers.  You will never know how deeply grateful I am for your attention.

                                                                        Sincerely yours,

                                                                        Your wonderful self

Yes, it is a schmooze and you're angry.  But, he needs to hear good words from you and be motivated to get his people to do what they need to do.  I think this will work.  If the letter doesn't work in a few days, then send it once again, stating you weren't sure he had received it.

BTW, when a physician dies, it is only ethical for the other doctors in the area to make some effort to help with his patients until a replacement arrives.  Could you write a letter to your friend's GP, and ask if he would serve as your GP until you find a new one.  He intervened on your behalf once, perhaps he could again.  Write a similar letter to him.

Now, I think the whole job thing is a huge blow.  I suspect you know that they are correct that right now you could not handle a job with more responsibility and more stress.  So, in a way, you understand down deep why they passed you over.  But, it is a total right cut to the jaw about how your illness is affecting your life and affecting the person you always thought that your were.  You have some major grief working here.  That is really hard.  We all go through it - only then to sometimes have to go through it again.  Honey, I feel so bad for you right now.  And if I was up for a road trip.....well I would still ask you to come here.  Your lane sounds like a nightmare.  We're having partly sunny days in the 60's.  I'd make you warm brownies.

The kitty whops are over.  Let me hold you in cuddley (read that plump) arms.  Know that this will pass and things will move along.  There is truly a light ahead.  

Luv, Quix
Helpful - 0
198419 tn?1360242356
Hi Moke, and everyone,

I can relate, have barely been able to respond or contribute myself.  Feel, that it's all I can do to be my own advocate, and deal with the body and responsibilities all at the same time.  Despite my dx, I'm having problems.

Everything has become so specialized. It's hard to know where to turn.  
It's hard to be helpful to others when you are trying to help yourself, or just cope,
or just get by.  

Thank God for all the new family members here.
As always, pulling up the slack, when the old regulars are spinning on the merry-go-round, and can't, or don't even know where to get off.  Like family, this forum will hold itself up, in some manner.  It's got special magic, spirit, and no matter how it evolves, or what we are going through, it's just full of blessings galore, and sustains it's self.  It's heaven sent.

Can only hang in there the best we can, even when your thread gets thin, and you think it's going to break, don't worry, it's a given, there's someone always here to add some layer of support. . . .Guess I'm saying is keep lurking Moke, and whoever else is, myself included.  It will sustain you sometimes, and, somehow.

much love to you all,
be well,
SL
Helpful - 0
293157 tn?1285873439
I agree with Zilla, I know I needed sometime away from all the Limboland thing and try to sort things out...but this forum will be here when/if you need us in between...just to say Hi...and let us know how you are...
take some time...it might help clear your mind aibt...
take care
andie
Helpful - 0
220917 tn?1309784481
I have seen your lonely comment on the forum for a long time, now today.  I wasn't sure what I was going to say, because if you've been lurking, you know I have been having the same problem.

This Limbo is SO sucky.  If more men developed MS, they'd have different criteria, because men wouldn't put up with this endless waiting by the phone.  And I mean that as no slap in the face to men.  They just wouldn't.  Aside from Craig, how many men here had very quick diagnoses?  I'm only saying, there would be different critieria by now, I know it.  Or at least some new category...

We long-suffering martyrs (women) have got to stop this long-suffering and do something.  What -- I'm not sure.  A pity party is a good start, I know that.  I feel pretty good after mine.  Ready to start back again.  ELT had a good idea about getting fit, but I know I can't walk like she does.  LUNCH is good!  I could walk from my car to the restaurant with some friends!

Reconnecting is essential, I think.  I just told someone whom we carpool with that I've been having health issues for the last year, but that I really want to start to make more friends at the boys' school (and our church, which is connected).  She was happy to oblige, and invited me to a mom's night out coming up.  I've been invited every month this year by the group, but with her there to sort of introduce me, it's just what I need to go.

I've never been the type to "need" someone to introduce me around, but now I feel vulnerable and isolated.  So I reached out to her and I'm going to go to the night out to try to make some friends.  I need to.  I want to feel part of the human race again.  And Ronda knows I have health issues (I'm sure EVERYBODY does.  You know how word travels) and they'll be kind.

Hang in there, Moki.  You HAVE to figure all this out.  Your health depends on it.  In the mean time, try to join the land of the living again.  That's what I'm going to try to do.  You just make a sharp left out of Limboland.  Door swings both ways.  We can return when we need to.

Zilla*
Helpful - 0
Avatar universal
ELT
   Please don't take what I said wrongly, was just going to comment, but, you beat me to it.  I didn't mean you should rush out and find something to do.   I was only trying to cheer you up.  So sorry about that.  I know what that is like, rushing home to do things you are unable to do.  I was at work, 'til four years ago.  I got sick with some mysterious beast with a young child and a mortgage.  I jogged to and from work, and I frequently couldn't do it all.  I DO know how tough it is.  

   Fortunately, I suppose, though I'd rather be at work, I have all day to do nothing.  I'm not allowed back to work.  But please, don't think I was being nasty, that way.  Just me being silly.  The way I cope, I guess.  

   Sorry, Erica
Helpful - 0
195469 tn?1388322888
See PM........

Heather
Helpful - 0
281565 tn?1295982683
Well my day is just getting better and better. NOT!!

Just got off the phone with my supervisor from work. They are looking to hire an assistant  supervisor to help her out and I have been passed over. She didn't want me to find out at work and was nice enough to call. She said the job would have been mine as they thought I was the best fit for the job, but the hours are demanding and I am not reliable enough to do it. She was really sorry and I do understand why I was passed over, but I am so upset that my health issues are causing me to lose out on what I have been working so hard to achieve. Man this day just isn't getting any better for me.

Erica, by the time I get home from work, I am usually too pooped to do much and am lucky if I can muster the energy to cook supper. Weekends are usually where I play catch up on the housework. Ah Beer, I wish I could, but I have found the last year, that alcohol brings my fatigue on worse, so that kind of kaboshes that.

Rena, your hugs have found their way to me. I know you too have been having a rough go and have felt so bad for you. Yes we will survive, but the battle is hell. I want the war to be over. Thank you Rena. Hugs right back at you. Hope our brains are having a good time together. haha

Spastic Ada, I just seemed to have woke up this morning in such a crummy mood and then my day kept going to **** in a handbasket. I've left a message on the machine for the neuro to call back, so we'll see if he does.  Hugs to you to.
Helpful - 0
393986 tn?1303825975
Moki, it is very. very frustrating and very maddening what you are going through. Some doctors are just horrible and you really want to bop them up beside the head.  I don't know if you have someone close to you that can go with you to the dr's appt to be kind of a bouncer for you. It is not ok for a dr to be an jerk and they should be returning your phone calls. I'm not sure where your located and what services are available but I would be on the phone calling to just about everyone in the neuro sciences field. I wish I was there with ya, I would be definately giving that drs office a mouthful.

With Hugs,

Spastic Ada
Helpful - 0
335728 tn?1331414412
Oh Moki...I wish I could give you a big REAL Hug right now and then we could have a wonderful pity party together and share notes and dis doctors and nurses and bus drivers and who ever else we wanted!

I feel the same way lately...in pain but that is the only place I am!  I am trying to go out and do things but I seem to pay for it big time for days afterward...is a smile and a good laugh worth it...HE** YEAH!!

I went out with my Mom and hubby yesterday and my Mom called me a little while and said "I have not heard you laugh so hard in so long...it was wonderful"!!

You know what...I found out today that I am forgetting the people around me and that I need to quit being so selfish and ensure that I am not laying my pain on them ALL the time!

You know Moki...I really think our brains are in the same place and I certainly hope they are enjoying themselves cause I am rambling now and I don't know where I sit???

I really wonder if we were the daughter's of these doctors (God forbid they were blessed with children) would we be treated in the same uncaring, condescending way?  Would we be brushed away like a  pesky fly just because we didn't present with a classic CIS?

I sometimes wish that we could post a huge billboard for all neuro's to see with all our concerns that they are not aware of or choose to ignore...at least then we could call them on it (yeah, like they would care).

I am sorry you are feeling so icky Moki...you don't deserve to feel this way and I wish I could be the one to help you but I think we are sitting next to each other in the waiting room of the "perfect" neurologist who doesn't exist and therefore, our names will never be called...and I HATE reading those old magazines over and over!! tee hee

I hope you are able to get out of your funk soon sweetie and I hope someone will be able to give you some help to get out of this funk...I do believe that is what it is and we have been in it before and we survived....we will again right honey???

Lots and Lots of Hugs Honey,

Rena
Helpful - 0
Avatar universal
ELT
  We all get down from time to time.  And, yes, the wait for validation is an annoyance to say the least.  I am as close to coming to terms with the fact that I may never be able to enjoy that.  So, I am more at peace than I once was.  Don't get me wrong, I still have my moments.  

   One thing which has helped me is that I have begun doing different things.  I started trying to get fit.  I may never be what I was before, but, I enjoy going to the gym and participating in exercise class as much as I can.  Last year, I got REALLY good, almost, again.  I was doing two classes mondays, two wednesdays, one fridays one saturday, the exercise machines tues/thurs and lots of other things.

   Now I'm lucky if I make it to three classes a week, I'm more apt to make it to two.  I do hike with the ladies I met at the gym on tuesdays, the added bonus being lunch out afterwards.  The ladies in my exercise classes that I hike with are, on average, about 20 yrs my senior.

   But, each and every day, there is something somewhere which makes me laugh, smile, or just sigh.  

   And there's always beer!!!  :)  :)   :)

   Erica
Helpful - 0

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