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Sjogrens Topics => Living With Sjogren's => Topic started by: wordnerd on April 07, 2008, 12:55:24 PM

Title: Need to vent!
Post by: wordnerd on April 07, 2008, 12:55:24 PM
I am so exhausted I just want to cry!  It seems that I'm having a flare of everything right now.  I've been running a fever for a few weeks.  I've started having pancreatitis symptoms again.  I'm nauseous and having bile backing up into my stomach along with stomach pain.  My abdominal ultrasound showed that my liver is enlarged, so I might be going into a flare of my AI hepatitis too.  I've been having pain over there as well.  I'm waiting to find out if the labs show anything serious going on with my liver.

My right cheek is still swollen.  My whole body hurts.  I've been taking 2-3 naps a day.  The brain fog has set in big time.  I've been having headaches and/or migraines every day.  My numb thigh is itching like crazy now for some reason.

I have to see a new doc now to address my sleep apnea.  And I still have a month or so before I'm having my surgery to put in my pee pacemaker as I like to call it.  Oh and I may have a bladder infection or something going on because I have WBC in my urine.

I can't get in to see my pancreatitis specialist until June I think.

On top of that I'm trying to put together a complete list of my medical problems and symptoms to send off to the autonomic clinic at Harvard in hopes that they can see me sooner than 9 months from now.

Then there's my SSI appeal.  I hired a lawyer because I'm just way way too stressed and exhausted to try and do it myself.

Then there's my personal life which is a total mess!  My parents are broke because my $#%$@#*@ father won't get a job and insists on continuing to try to do these ridiculous entrepreneurial things because it like a form of gambling addiction for him.  As a result of him doing this my whole life my parents are in extreme amounts of debt.  He even turned down a 200k a year job my cousin offered him without telling my mom or anyone about it because he wants to do his money making schemes.

My mom is trying to get a full time job after being out of the workforce for years.  In the meantime she's being my "caretaker" at 9.50 and hour as paid by the state.  If she gets a job I'll have to find someone else which is a major source of stress.

Oh and my parents are getting divorced as soon as is feasible.  And our lease is up in August, so we're going to have to move.  Who knows where to.  Maybe my mom and I will move into the city to be closer to my doctors and a single life for her but everything is up in the air.

Meanwhile, my younger sister is calling me everyday complaining about how miserable her life is up at college because she has no friends and just broke up with her boyfriend.  The only reason she has no friends though is because she makes absolutely no effort to make plans or hang out with anyone.

I want to be a supportive sister but I've just about reached my limit at listening to her whine about how bad her life is.  Our family situation is stressing her out too but at least she's not here with my parents everyday.  Also she can work and support herself if she needs to.  She can go out and make friends if she wanted to.  And I can't do those things right now.  And she never want to hear what I'm upset about or going through because she's so stressed out that she can't handle it and still get her school work done.

Pretty much all my friends have abandoned me.  My best friend last called me over a month ago and said she was coming over the next day to hang out.  She didn't show and I just gave up on our friendship.  We were best friends for seven years.  But I can't keep calling her and texting her and emailing her and waiting weeks for a response.  Worrying and stressing about it all the time.  I just don't have the energy or emotional reserves to deal with that anymore.  For seven years I've excused her lack of effort to call me back or initiate making plans.  But now she's 25 years old and is responsible to her full time job and has time to call her boyfriend so I'm just done putting myself through it.

My one friend who still keeps in touch on a regular basis is in med school halfway across the country so she's super busy and far away.  Even so she's been great.

I really need to talk to my therapist but I can't afford to.  I was supposed to see my psychiatrist today but he apparently had to have surgery.

I'm so tired and alone and bored.  I feel so overwhelmed.  Suffocating in a tank of rising water struggling to stay afloat.  Trapped by my situation and my broken body.  I feel that soon my spirit will be broken too.  But I'm trying to hang on and protect it.  One day at a time.

Thanks for listening to my rant... or whatever that was.  You guys are the best!

-Lauren
Title: Re: Need to vent!
Post by: Scottietottie on April 07, 2008, 02:13:37 PM
(http://i62.photobucket.com/albums/h81/Scottietottie/Hugs/Ppolarhug.gif)

I'm sorry you're so ill. It sounds like a big flare. I'm sure AI diseases are susceptible to stress factors and you have a lot going on right now.

If you can't see your pancreas specialist till June, and it's playing up, it might be an idea to go to ER. It might be anyway because several weeks of fever is not good.

This isn't a very long answer but I really don't know what to say other than I'm listening to you. I wish I could do more.

Take care - Scottie  :)
Title: Re: Need to vent!
Post by: ree031 on April 07, 2008, 03:35:15 PM
I'll second that  hug  :-*

My heart goes out to you Lauren. It is so easy to become overwhelmed with everything going on around you. I Have been in that suffocating tank before. When everything gets to where you are you, have a good cry and do something for you. Have a relaxing bath, read a book...talk to all your sjs friends  ;D !!!

What doesn't kill us, only makes us stronger. I truely believe that your so called best friend is not worth the hassle and pain it is putting you through. Cut the cord between you and let her go. As you get older you will meet new friends who will be genuine and true.

As for your sister and your folks. You need to realise that this is not your problem. If your sister can not get out there for herself its not your fault. You have enough going on right now with you. So , put yourself in a loving little cocoon and look after yourself. You need to rest and keep your spirit strong. It seems that you are the worrier of the family and everyone may put all the problems of the family on to you....or you just step up and take it on unknowingly? I can relate to that big time!

If you can not afford to see your therapist get on here and talk to us. I am sure you will get lots of wonderful uplifting advice.

I hope this helps, I have said it all to try and help your deflated soul.

Hugs and best wishes,

Ree  :-*
Title: Re: Need to vent!
Post by: ree031 on April 07, 2008, 03:36:26 PM
Oh and if you would like to send me a private message anytime, don't hesitate!

Ree  ;)
Title: Re: Need to vent!
Post by: quiger on April 07, 2008, 03:49:30 PM
Awww Lauren, so sorry to hear all that you are going through. Since you are having a flare, please try to rest as much as possible. This sounds like a trying time for your whole family and I hope things settle down soon.

You came to the right place to vent. It's always nice to know that people understand and care.

quiger
Title: Re: Need to vent!
Post by: Pooh on April 07, 2008, 04:13:13 PM
Good golly M's. Lauren, that sounds like a doozey of a flare you are going through.  I wish I could think of something that would cheer you up and help you feel better. 

I will just say that we are here for you, so vent, rant, rage away, we will listen.  You do need to think about Lauren though and do what's best for her right now.  You cannot change what is going on with your Mom and Dad or your sister.  So just rest up and treat Lauren good she needs it. ;D  Please remember

When you're here, you're never alone!

Hugs to you,

Pooh
Title: Re: Need to vent!
Post by: YICKelly on April 07, 2008, 04:14:14 PM
I am sorry.  I can offer no help.  But I am glad you vented a bit here.  Sometimes that helps.  We are all here  to listen.  
Title: Re: Need to vent!
Post by: susanep on April 07, 2008, 04:43:45 PM
All I can say is I do understand.  I learned years ago while in one on one therapy-1.no one deserves abusive behavior 2.we must take care of ourselves first 3. that even the constitution says we have the right to life,liberty, and the pursuit of happiness.

susanep :)
Title: Re: Need to vent!
Post by: genko_b on April 07, 2008, 05:00:03 PM
Dear Lauren:

I wish you were nearby enough for visits.

You've heard this now from several people, but you can only be responsible for your own life, not your friends or family (all theoretically grown-ups), so just do what you need to do to take care of yourself. Easier said than done, in your situation, for sure.

Just as Scottie says, I am very concerned about your fever and the pancreas acting up again. Is there any way to get seen sooner than June, before things conceivably get worse? The ER is one way. Are any of your docs willing to get you in and get you seen at the hospital sooner?

Take care, we are thinking of you.

Genko
Title: Re: Need to vent!
Post by: maya on April 07, 2008, 05:32:09 PM
(http://farm3.static.flickr.com/2150/2397506404_c78f008d54.jpg?v=0)

Lauren: We are always here for you - hope things will be better for you soon.

Maya
Title: Re: Need to vent!
Post by: wordnerd on April 07, 2008, 09:27:37 PM
Thank you everyone for the the support and hugs!

I've been seeing my GP, rheumy, and regular GI docs on a more regular basis, and everyone is keeping an eye on the situation, so I'm hoping to avoid the ER.  Hopefully things will calm down on their own or my docs will bump up the meds in the mean time.  I'm waiting on my latest lab work, so....

Ree - You've certainly got me pegged.  I've been like a third parent in the house since I was about 5.  I've had a lot of therapy that's helped me learn to take care of myself instead of just always care taking everyone else.  Unfortunately its really hard to separate from my parents financial and relationship issues since I am living with them and since I can't support myself right now they directly affect me.

I'm trying to keep the stress level down... though it seems down right impossible most of the time.  I know its not helping me feel any better.

In the meantime I'm eating lots and lots of toast!

Thanks again for being here to vent to!  *hugs back*

-Lauren
Title: Re: Need to vent!
Post by: Waldop on April 08, 2008, 06:03:05 AM
Lauren,

I'm so sorry to hear that everything's dropping on you at once. Lord knows we've been in that situation before. It surely doesn't make it any easier when your own friends don't, or can't, deal with your illness. I've been in that scenario too many times to count. I'm glad to hear that you did get a lawyer to help you deal with this. It's not something you can do on your own.  I know you've probably heard this all before, but the only way to handle what you're going through, is one day at a time. That's the way I deal with things when I'm getting it from all ends. I know it's not what you want to hear, but believe you me, it does work in the end. If I start to stress out from everything that's going on, I'd surely be in the loony bin by now.  Just so you know, you do have us and we'll ALWAYS be here for you.

You take care of yourself and keep the faith. I promise, things will get better.

hugs
Barrie
Title: Re: Need to vent!
Post by: wordnerd on April 11, 2008, 03:32:36 PM
Thanks Barrie!  I do try to take things a day at a time and it does help.

The adventure that is my life continues!  My mom left town yesterday to visit my sister at college.  She hired a professional caregiver to come in and help with meals and stuff since my dad works all day and isn't much help.  My mom already knew her since she is the mother of a friend of hers.  So this lady shows up yesterday 1 1/2 hours late with her friend.  She introduces her friend but offers no explanation as to why she's there.  The two of them talk amongst themselves.  It was very odd and extremely unprofessional.  But I was so so tired yesterday I didn't have the energy to figure out how to address the situation.  My dad didn't have time to try and figure it out either apparently because he didn't ask either though he also thought is was very strange.

After they left (my dad suggest they could go since I was taking a nap and they had nothing to do), my dad and I agreed that if she brought her friend again today we wouldn't have her come back.  Well she brought her friend, so my dad made an excuse and said we didn't need them anymore and left it up to my mom to figure out what the heck happened when she gets back.

I'd also be ready to smack my sister by now if she weren't out of smacking range by several states.  First she calls me up on Wednesday afternoon while I'm napping demanding I help her find software to make a flow chart with.  I tell her I'm sleeping.  No appology for waking me only (and this is a direct quote) "Well you aren't thinking hard enough.  Wake up more!  Pretend I'm your doctor calling and you have to wake up and talk to me!"

It would be more hilarious if it weren't so rude.  I tell her I don't have an answer of the top off my head.  She gets mad and hangs up on me.

The next day as if none of this has happened, she calls again requesting that if my mom (who is flying to see her) doesn't get there in time can I proof read her paper for her that's due at midnight.  I say ok.  She also asks that if I'm not up to it, could I ask my (I guess former now) best friend if she can do it.  I tell her I haven't spoken to my best friend in over a month.  "WHAT?!?", she exclaims.  "I thought she had apologized for being so absent and was going to start hanging out more."  This was the last time I spoke to my friend over a month ago I tell her.  She's shocked.  I'm thinking... well you never ask what's going on with me and don't ever want to hear it, so what do you expect?  All you do is complain how miserable your life is.

I didn't say anything though.  I wasn't up to getting into everything with her right then.  No point in getting into an argument with her resulting in her being too upset to write her paper and then blaming me.  She'll be home in three weeks.  I'll let her know how I've been feeling about our relationship then.

In the mean time, I finally took my temp last night because I was feeling so awful.  It was 99.9 which is really high for me.  I usually run in the high 97s, but I've been running 99.4 or 99.6 for the last two weeks every afternoon.  So I have no idea what up with that.  My most recent batch of labs and stuff have come back normal (except for the enlarged liver), so my docs concluded that I'm probably just having a flare.  But with this spiked fever last night, I now have no idea again.  And of course its Friday.  And my mom's gone so I couldn't go to the doc anyway.

I'm planning to just ride it out through the weekend and see what (if anything) happens.  I'm just rather frusterated with all this feeling crappy for no apparent reason.  If it really is just a flare then I want my rheumy to bump up my meds.  He's proving elusive however right now.  Three calls into his office.  So far no return call.   ::)

To be continued...  ;)
Title: Re: Need to vent!
Post by: Waldop on April 11, 2008, 04:30:05 PM
Thanks Barrie!  I do try to take things a day at a time and it does help.

The adventure that is my life continues!  My mom left town yesterday to visit my sister at college.  She hired a professional caregiver to come in and help with meals and stuff since my dad works all day and isn't much help.  My mom already knew her since she is the mother of a friend of hers.  So this lady shows up yesterday 1 1/2 hours late with her friend.  She introduces her friend but offers no explanation as to why she's there.  The two of them talk amongst themselves.  It was very odd and extremely unprofessional.  But I was so so tired yesterday I didn't have the energy to figure out how to address the situation.  My dad didn't have time to try and figure it out either apparently because he didn't ask either though he also thought is was very strange.

After they left (my dad suggest they could go since I was taking a nap and they had nothing to do), my dad and I agreed that if she brought her friend again today we wouldn't have her come back.  Well she brought her friend, so my dad made an excuse and said we didn't need them anymore and left it up to my mom to figure out what the heck happened when she gets back.

I'd also be ready to smack my sister by now if she weren't out of smacking range by several states.  First she calls me up on Wednesday afternoon while I'm napping demanding I help her find software to make a flow chart with.  I tell her I'm sleeping.  No appology for waking me only (and this is a direct quote) "Well you aren't thinking hard enough.  Wake up more!  Pretend I'm your doctor calling and you have to wake up and talk to me!"

It would be more hilarious if it weren't so rude.  I tell her I don't have an answer of the top off my head.  She gets mad and hangs up on me.

The next day as if none of this has happened, she calls again requesting that if my mom (who is flying to see her) doesn't get there in time can I proof read her paper for her that's due at midnight.  I say ok.  She also asks that if I'm not up to it, could I ask my (I guess former now) best friend if she can do it.  I tell her I haven't spoken to my best friend in over a month.  "WHAT?!?", she exclaims.  "I thought she had apologized for being so absent and was going to start hanging out more."  This was the last time I spoke to my friend over a month ago I tell her.  She's shocked.  I'm thinking... well you never ask what's going on with me and don't ever want to hear it, so what do you expect?  All you do is complain how miserable your life is.

I didn't say anything though.  I wasn't up to getting into everything with her right then.  No point in getting into an argument with her resulting in her being too upset to write her paper and then blaming me.  She'll be home in three weeks.  I'll let her know how I've been feeling about our relationship then.

In the mean time, I finally took my temp last night because I was feeling so awful.  It was 99.9 which is really high for me.  I usually run in the high 97s, but I've been running 99.4 or 99.6 for the last two weeks every afternoon.  So I have no idea what up with that.  My most recent batch of labs and stuff have come back normal (except for the enlarged liver), so my docs concluded that I'm probably just having a flare.  But with this spiked fever last night, I now have no idea again.  And of course its Friday.  And my mom's gone so I couldn't go to the doc anyway.

I'm planning to just ride it out through the weekend and see what (if anything) happens.  I'm just rather frusterated with all this feeling crappy for no apparent reason.  If it really is just a flare then I want my rheumy to bump up my meds.  He's proving elusive however right now.  Three calls into his office.  So far no return call.   ::)

To be continued...  ;)

Lauren,

It's great that you have a good sense of humor through all this. If we didn't it would make things so much harder.

I can so relate to your sister not comprehending how your feeling. No matter how much you tell your loved ones what the situation is, they just don't have a clue. I'm not saying everyone, but a good many of them. They couldn't possibly because they're not in our shoes.  When I was talking to my mom about this new medication that's suppose to help with the moisture in our mouth, she still doesn't quite get that I have little or no saliva. I know she means well and she probably doesn't realize she does this, but it really ticks me off. I can't tell you how many times I've tried to explain Sjogren's to her, but she doesn't seem to get it.

As far as your low grade fever, that's something I would keep a close eye on. My temps usually run around the 97's as well. Have you spoken to your doctor about these temperatures? Are you having any stomach pain?? I don't mean to sound like a know-it-all, it's just something I would check out.

Anyhow, keep us posted...

hugs
Barrie
Title: Re: Need to vent!
Post by: maya on April 11, 2008, 05:01:02 PM
To be continued..hehe that was a nice one ;D

Our wishes and prayers continue too!

Worse/Better - keep us posted.

Maya
Title: Re: Need to vent!
Post by: wordnerd on April 11, 2008, 08:38:10 PM
Thanks Barrie & Maya!  I'll keep you posted as always.  You don't think I'd leave you hanging with my cliff hanger ending, do you?

*Quick Digression Alert*

When I was in 5th grade, I worked on the school paper which we sold to the other kids at recess and lunch-recess for a nickel.  I was very disappointed with our sales (I couldn't even move much inventory if I told the little kids what a deal they would get if they pooled their money and got 5 for a quarter  ;D ).  So, being the little entrepreneur that I was, I decided to try writing a serialized short story for the paper hoping I could hook people with the first one and then they'd have to buy the next one.  So Part One hits the playgrounds, and suddenly I'm being accosted by groups of 3rd graders I didn't know demanding that I tell them what happens next.  I was shocked and so overwhelmed by my sudden success that I never wrote Part Two.  But it put this little thought in the back of my head that maybe... just maybe... someday I could write for a living and people would actually want to read what I wrote.  Hehe

Anyway...

Barrie - I'm sorry to hear that your mom can't quite get her head around your illness.  That must be very frustrating!  Strangely, my sister is actually my one family member who really gets what's going on with me the most.  She just gets struck with episodes of lonely self-absorption (IE I'm the only one in the world who feels like this/has this problem) that I think is just very indicative of her age group (no offense meant to any 20 year old college students reading this).  I'm pretty sure she'll outgrow it.  *crosses fingers*

And yeah my docs (except my rheumy) all know what's going on a keeping an eye on it.  Well they don't know specifically about last nights fever... but they know what's been going on the last two weeks.  They aren't ready to do anything about it yet.  But if things go south over the weekend its always nice to know I have a doctor in the family who also happens to be my GP's partner.

And yes, a sense of humor is definitely necessary for surviving any difficult life experience.  I watched a comedic video last night that dealt with a very tragic subject matter, and a lot of people were griping in the comments section that it was offensive and inappropriate to joke about something like that.  I feel that its most appropriate to joke about touchy subjects.  What better way to gain insight and understanding of something too uncomfortable to try to understand otherwise.  My favorite author is Kurt Vonnegut, and one of my favorite things about his books which are the darkest of comedies is his ability to evoke deep pain and sadness one moment and then laugh about it the next.  Such is life.  Or as he would put it... "So it goes."

-Lauren
Title: Re: Need to vent!
Post by: wordnerd on April 21, 2008, 11:09:22 PM
I'm back!  I've been having a rough few weeks.  I've been sleeping tons and tons trying to get over this stupid flare.  Feeling rather stressed out about my family's financial situation.  I have no problem admitting that I like to be in control, and I am very much not in control of my father's increasingly irresponsible financial decisions.  I don't know if my parents will still be married in a few months.  I don't know where I'm going to be living in a few months when our lease is up.

I've been more upset about the end of my friendship with my best friend (I'll call her A to prevent confusion) than I realized.  I thought I was okay with it since our friendship has been pretty nonexistent for a while.  But I feel soooooo alone.  I have one friend who calls me on a regular basis left (I'll call her L).  But she's in med school half way across the country.  The plus side is I can tell her what's up health wise with no explanations required.  And she really gets the mental illness component as her mom was untreated for paranoid schizophrenia until a few years ago and she suffers from seasonal depression herself.  Plus L and I lived practically as sisters for all of high school when she had to move out of her mom's house and her dad couldn't pick her up until after work often late in the evening.  I am really grateful to have L as a friend still, but I wish I could see her in person.

I was checking my voice mail the other day and had an old saved one from A on there.  That set me off crying for an hour.  My mom is really mad at her for abandoning me.  But I can't seem to be mad at her... just sad.

Anyway...

Health wise I've been a mess.  The low grade fevers continue.

I've noticed that I've been getting winded from the littlest things all of a sudden.  I put my socks on and then have to lie down for a few minutes until I stop huffing and puffing.  It's especially weird because my muscles won't feel fatigued but my heart will be racing and I'll be out of breath.  Don't worry... its on the "To Ask the Doctor About" list.

I went to a pre op appointment with the anesthesiologist the other day for my pee pacemaker surgery that WAS scheduled for May 1st.  I was supposed to have it out patient at the hospitals surgical center.  Well I hand the nurse my medication list (which is 28 medications long) and it quickly becomes apparent that its going to be a problem to do it at the surgical center.  Apparently if anything goes wrong there they have to call 911 and take you over to the main hospital.  Well if anyone told me that upfront when I was scheduling the thing I could have told them no anesthesiologist in their right mind would do the procedure on me under those circumstances.

I am basically an anesthesiologists worst nightmare.  First of all, I'm on 28 meds!!!  Secondly, I have a life threatening allergy to latex.  Also I've recently lowered my dose of steroids.  Oh and I also get anaphylaxis from Penicillin, Dilaudid, and Flourescein.  Also I have asthma.  Oh and sleep apnea.  Don't forget the seizures.  I even had to have my wisdom teeth out in the hospital and at that point it was only because of my latex allergy.

But no one told me that there was any possibility of it not being out patient when I scheduled.  So now I'm having it a week later and its in patient "just in case" that have to admit me afterwards.  And now my anxiety level about the whole thing has gone up...  Having spent 10 weeks total of the last year in the hospital, I am not eager to be admitted even if the plan is to be discharged the same day.

And its triggered a bit of a reoccurrence of post traumatic stress from the episode of anaphylaxis from latex I had in the recovery room after having an NJ feeding tube put in.  The bits of it I remember are all to vivid.  It makes me wonder if every time I'm supposed to have a supposedly simple procedure I'm going to trigger vivid memories of the whole ordeal and worry I'll end up back in the ICU in bipap or worse.

The sooner the whole thing is over and done with the better!  Plus maybe I can cut 19 minutes out of every trip to the bathroom!

In other news, my pancreatitis is still acting up and I've lost 12 pounds in two weeks.  Which is no big deal while I'm 100 pounds over my normal weight,  but...

Until next time...

-Lauren
Title: Re: Need to vent!
Post by: Linda196 on April 22, 2008, 03:44:07 AM
Lauren, I'm sorry you are battling so many foes, but thank you for the glimpse of a determined young woman with a positive attitude and refreshing sense of humour despite everything.

If anyone can beat these setbacks, I'm sure it's you!
Title: Re: Need to vent!
Post by: Scottietottie on April 22, 2008, 11:44:30 AM
Hi Lauren  :)

You are having a rough time of it. I think it's inevitable after having a procedure go wrong to think about it for subsequent procedures but hopefully evryone will have learnt from previous mistakes and they'll all be flagged up on notes.

Sorry the surgery's had to be postponed. It's the sort of thing one just wants over and done with. I hope it works out for you sooner, rather than later.

As far as your parents go - I don't know what to say.  I've been informed my my youngest son, who's been away at college, that he intends to come home after he's graduated because he thinks it'll be easier to get a job from here. He went on to say how he'd like to re-organise it. I can't say I want to be reorganised!  :o  I know he's got used to feeling independent - but so have I!  ::)  Interesting times ahead.
My Dad was a pain in the butt who expected me to do what I was told. (This included NOT marrying the man that I've been married to for 33 years. He said it would never last) I always told my kids that having had my Dad on my case for 20 years I wasn't going to do what I was told to by them for the next 20!!

There's nothing as complicated as relationships.

Take care - Scottie  :)
Title: Re: Need to vent!
Post by: wordnerd on April 22, 2008, 12:45:13 PM
Thanks Linda and Scottie!  It helps so much to have a place to come and vent when I need it.  Hurray for Sjogren's World!  ;D

Wow Scottie... sounds like you and your son are in for an interesting experience.  Moving back with my parents after the freedom and independence of college was a very difficult adjustment.  My sister is coming home from her Junior year for the summer in week and a half, and it should be... interesting.  In her defense coming home into the dysfunctional mess that is our family isn't fun, but she's been pretty awful about taking on any responsibility as a member of the household every time she comes home.

I think my mom could probably relate to your feelings about your son moving home.  I don't think she ever expected to be taking care of her formally overachieving and (supposedly) needless 24 year old daughter as she heads into her 60s.  I don't think she expected to be divorcing my dad or attempting to reenter the workforce either though.

You two take care too!  :)

-Lauren
Title: Re: Need to vent!
Post by: Scottietottie on April 22, 2008, 03:58:31 PM
Hi Lauren  :)

I'm sure your Mom didn't count on looking after you and probably wishes she didn't have to because I'm sure she wishes you were well and some of her will feel guilty because your not. She probably also has her own aches and pains, which I'm sure are minor compared to yours but just physically coping is probably quite hard.

My 23 year old got really ill when he turned 20 and it was horrible. He recovered but it took about 2 years and he still suffers from fatigue. (This is the one that's coming home)
I know illness gave him a different perspective on life - as I'm sure it has for you too. He kinda knows what's important now and what is 'froth' much better than he used to.
he was hard to look after because he didn't want to be. He point blank refused a wheelchair so was stuck in the house for longer than he should have been. Car journeys were a nightnmare because he got really bad motion sickness. Medical care was pretty well non exixtent. After more than a week in hospital and a neurological dx we were just left to it with no further appointments and no time scale as to whether he would recover or stay as he was.
My thyroid was dxd about the same time as this and I was not stabilised on medication and everything was very fraught. I probably was not the world's best carer.
I love my son dearly however and I'm sure your parents love you equally as much (even if they're not getting on too well with each other) They probably just feel totally overwhelmed by your situation.

((((( hugs ))))) - Scottie  :)
Title: Re: Need to vent!
Post by: wordnerd on April 22, 2008, 08:39:57 PM
Scottie - That sounds like a really difficult few years your family must have gone through!  And you are totally right about my parents... they do love me... even my dad as totally messed up as he is right now.  And we are all overwhelmed... financially, physically, and emotionally.

My mom said something to the effect that there are lots of moms out there that would drop everything to take care of their child if they were sick, but she isn't one of those moms.  I think she often feels guilty about that (but its complicated because I think she's off out of the house doing her own stuff not only so she doesn't have to deal with me being sick but also my dad who works from home).  At the same time she feels angry that her life is interrupted by my illness as much as it is.

But that's nothing new with my mom.  She's always been that dichotomy of guilt and anger.  Guilty that she's not meeting peoples needs and angry that they have needs in the first place.  And I've pretty much turned her world on its head by going from her "perfect" over achieving child who never expressed any needs and even tried to meet her needs to her physically disabled and extremely needy (in every sense of the word) adult child.  Its been extremely challenging for both of us.

Sigh

-Lauren
Title: Re: Need to vent!
Post by: irish on April 22, 2008, 09:07:04 PM
Lauren, You sound like you have had a very trying couple of weeks. You continue to amaze me though as for someone your age you have so much wisdom and understanding of people and circumstances. This just goes to prove that those who can endure are given the heaviest burden. Just imagine your mom with your health issues.

It certainly sounds like your Mom is one of the people who don't like to admit there is illness in the world. I know a few people like that. They are usually knocked down for the count when they get hit with health problems.

Hopefully, this circus of health, financial and emotional issues will settle down as it certainly doesn't help your physical condition. I am so sorry that you don't have a great social network that can help you out. I think I have mentioned church at one point as a source of help. I am wondering if there is a church out there with a ministry for ill people. Many of the larger congregations now have a parish nurse who helps people with "things". It might be worth the time to call around. I always feel that the more contacts a person can make the more options and opportunities open up.

Just a little tidbit of cuteness)is there such a word?). Sunday I was with my DIL and little 5 month old grandson waiting in the car for his mom to pick up something from the store. He had spent a lot of time in his car seat and it was getting hot in the car. He was looking around with an almost frazzled gaze and rubbin the buckle on his car seat. I took that to mean that he had had it sitting in that one position and was totally at the end of his rope.

I made the motion to unbuckle the seat and he looked at me with a look that said "thank goodness". I took him out and sat him sideways on my lap so he could look out the window--which was open some with a little fresh air coming in. He looked like an old grandpa in his blue jeans and tennis shoes and he watch cars and people come and go and I could tell it really was fun for him. Gosh, these little people are so much fun--can't imagine how they pick up so much of the information that they do!!! You had to have been there. 8)  Have a better week Irish
Title: Re: Need to vent!
Post by: wordnerd on April 22, 2008, 09:42:41 PM
Thanks Irish!  It's interesting how sometimes our best attributes come from the worst experiences.  If my family had been more normal... or even less dysfunctional growing up, I may have never learned so much about why people do the things they do.  But growing up in my house was like a crash course on insight into people and relationships.  I quickly learned how to cope by being our family's therapist by around age 5... keeping my parents happy and emotionally stabile enough to meet my needs as much as they were able.  My parents aren't bad people at all... they just both had a lot of childhood trauma of their own and never got help for it.  Anyway I don't play that role in my family anymore.  After 17 years of doing that I crashed and burned big time.

But out of all of that comes a lot of perspective and insight which I now use in ways that are far more healthy for me emotionally.

Imagining my mom with my illnesses gave me quite a laugh!  She's one of those people who bumps her elbow and you ask if she's okay and she says NO! It really hurts!  It drives me nuts  ;D  She does admit that there's illness in the world, but her main problem is being emotionally available enough to be empathetic to those closest to her.  If she's watching a show about complete strangers who are suffering, she'll bawl her eyes out.  Oh well.

I've made a few calls to Jewish Family Services in my area, but haven't found much that applied to me.  And frankly I have a pretty low comfort level with religious things.  I really wish I felt a closeness to God that so many people find so helpful in hard times, but that just doesn't come easily to me.

And that tidbit of cuteness was sooooo very cute!  Awwwww!  I was too exhausted to go to my family's Seder over the weekend, but I really missed seeing all of my little cousins.  I love chatting with them.  They often have the most interesting and funniest things to say.

Take care!

-Lauren
Title: Re: Need to vent!
Post by: irish on April 23, 2008, 10:35:03 PM
Lauren, You don't have to be "religious" to go to church. That may sound strange, but the fullness and kindness of God is often revealed to us in the kindness and understanding of the people in church who befriend us and accept us as we are.

Don't let your feelings keep you from finding kindness and friendship. One of these days you may come across a place that you feel comfortable. Irish ;D
Title: Re: Need to vent!
Post by: wordnerd on April 25, 2008, 04:24:39 AM
Thanks Irish!  There's actually a Unitarian Universalist church really close to me that seems like it might be a good fit for me.  I just haven't had the energy to go check it out yet.  I've had a hard time finding any sort of congregation that's been a good match for me.  I would say that my views match most closely with Humanism, but that's not a religion... its a philosophy... and most Humanists are atheist which I'm not.  I've been raised as a Reform Jew... Bat Miztvahed, Confirmed, and even taught Sunday school.  And I feel a cultural affinity towards Judaism, but the temple I was raised in never did much for me spiritually.

Anyway... I continue to search for the right fit for me in that regard.  But perhaps I'll see if there are any church programs around that could help me even if I'm not a member of their faith.

-Lauren
Title: Re: Need to vent!
Post by: Tricia281 on April 25, 2008, 10:49:29 AM
Hi Lauren,

Just a quick word to let you know I'm thinking of you and hoping these thoughts will give you a little bit of strength to keep going.  Your suffering has given you you such a wonderful gift of insight and compassion for someone your age.  Plus for me, being sick slows everything down and lets you see things you may have missed before, good and bad.  I have a 'best friend' who has also decided to ignore my illness and so I only see her on my good days.  However, I'm not giving up on her as I've known her since we were 16...a very long time!!! 

Being in your twenties is definitely the 'me' decade so try and not take it personally when your sister and friend do what comes naturally.  They probably also don't have the skills for coping with chronic illness and so out of sight, out of mind!
Hopefully as they get older, they will get wiser although that's not always the case.  My own sister has just gotten older and better at playing the victim!!! 

Take care,

Tricia
Title: Re: Need to vent!
Post by: kimbo on April 26, 2008, 09:37:41 AM
Lauren,
 I am very new here to this incredible group. I am so sorry for what you are going thru. I keep reading all your encouragements from this family you have in this forum, I am very thankful for the support you have here at your finger tips. I can't seem to find words to add to all who have already have given such good support.
Irish is right, at church you could find a body of caring people, that could minister to you in a loving way that you so need. And also in a larger church there may be support groups and people your age to meet and find friendship.
Because I see you are a wordnerd, one really compelling Christian author I enjoy, because he writes in a way that takes you thru his journey of thought process, is Philip Yancey. "Disappointment with God" is an example of one of his challenging books.
There is so much disappointments and each of our lives holds so many challenges it clouds our purposes and our very being.
I pray you find peeace in the loving arms of a perfect almighty God.

kimbo
Title: Re: Need to vent!
Post by: wordnerd on April 27, 2008, 09:53:11 PM
Thanks Tricia and Kimbo!  Sorry I didn't reply very quickly.  I've been practically hibernating the last few weeks.

Being in my age group certainly isn't helping things.  But I have learned who my real friends are.  (Though its been sad so discover those who weren't.)  No one wants to see someone they are close to and identify with being sick, especially when they're in their 20s and feeling invincible.  Oh well.

Thanks so much for being so supportive!  It means a lot to be able to come here and know everyone will being caring and understanding!

Take care!

-Lauren
Title: Re: Need to vent!
Post by: Shari on April 28, 2008, 06:02:56 PM
Hey Lauren!!

My~~~You have a lot going on in body, mind, and soul!   I wonder if at some point things would work for you to be able to be independent of your parents.  We all need that especially when we are young.

I know right now that you are in a major flare and you certainly don't need anything added to your list of, "Things to do", but maybe at some point gather a list of what options there might be, who could give you ideas, the pros and cons etc.

Everything is possible so be sure to make that pro list really long! ;D

An adventure!!

Where there is a will there is a way~~In the meantime~~your sis needs to put her mirror away and look at you and ask," Is there anything I can do for you Lauren?" There are times you just need to tell other's that you simply will burst if anything more is added to your list.

Relationships with friends change...especially when we are young .  I have reconnected with old friends often.  Our expectations of others can sometimes be to high for them to live up to.  There are many more people who will be coming into your life.  Enjoy!

I hope your flare is just about done with you!!!!  How was your day today?? :)

Love Shari      (the lady who brought her friend~~~my word~~If I had been there  >:(~~I am VERY good at speaking up for others)
Title: Re: Need to vent!
Post by: kathylee on April 29, 2008, 12:26:51 PM
I'm so sorry.....you are BEYOND overload. A couple of my tips for doing better....I had a significant improvement in my health when I got to the point that I could afford to drink the bottled water PENTA. I started using it around procedures and noticed a big change in recovery time. When my rent went down I started drinking a litre ( two small bottles) a day. My pain went down, strentgth and ease of movement up. I now have a parttime job and drink 3 per day. The recommended amount. It also improves my dry lung and reduces need for eyedrops and throat lubrication. Go to there website. If you call them 800-531-5088 they can tell you who is local supplier. It was developed by a guy who has Fibromyalgia. Tip number 2..drink carrot juice. I haven't been eating as many carrots cause I got burned out on them and I can tell my immune system isn't as hardy.        gotta go....
Title: Re: Need to vent!
Post by: wordnerd on April 29, 2008, 10:22:25 PM
Thanks Shari...  I am keeping my mind set that things will get to a point where I can be a LOT more independent.  And I have been and continue to explore options if I'm not able to get back to a level of complete independence.  I've even put myself on the waiting list for section 8 housing.  It's a FIVE YEAR WAIT!  So I guess you could say I'm planning ahead... just in case.  Hehe  ;D

I will be having a talk with my sister very soon.  My mom is going to drive home from college with her this weekend.  I'd rather do it in person since its not far off.  My sister has been undergoing a major metamorphosis of her own the last few months and even weeks.  She's had a rough year emotionally with everything going on in my family and not being physically present.  And as the younger sister by four years she's used to me being there for her more than the other way around.  Things will be ok with us.  I'm really not worried about it at this point.  In fact, I'm an extremely proud sister right now... seeing how much growing up she's done in the last few weeks... getting comfortable in her own skin for the first time in her life.  So yeah...

I had two friends I hadn't seen since we were all 13 come over this past weekend.  It was a really... no I'm for once at a loss for words to describe how good it felt.  I wrote a poem about it last night.  Maybe I'll post it later.

Kathylee - Thanks for the bottled water tip.  I will definitely check it out.  And of course run it by my doctors since I'm on nearly 30 meds and on a special diet.

Take care!

-Lauren
Title: Re: Need to vent!
Post by: Shari on May 04, 2008, 08:27:07 PM
Just saying, "Hi" Lauren!!   I am so happy that you had a fun weekend!!!  ~~Shari~~
Title: Re: Need to vent!
Post by: wordnerd on May 05, 2008, 03:35:46 PM
Thanks Shari!