Author Topic: Need to vent!  (Read 10680 times)

wordnerd

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Re: Need to vent!
« Reply #15 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

wordnerd

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Re: Need to vent!
« Reply #16 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

Linda196

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Re: Need to vent!
« Reply #17 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!
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Scottietottie

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Re: Need to vent!
« Reply #18 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  :)
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wordnerd

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Re: Need to vent!
« Reply #19 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

Scottietottie

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Re: Need to vent!
« Reply #20 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  :)
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wordnerd

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Re: Need to vent!
« Reply #21 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

irish

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Re: Need to vent!
« Reply #22 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

wordnerd

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Re: Need to vent!
« Reply #23 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

irish

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Re: Need to vent!
« Reply #24 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

wordnerd

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Re: Need to vent!
« Reply #25 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

Tricia281

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Re: Need to vent!
« Reply #26 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

kimbo

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Re: Need to vent!
« Reply #27 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
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog

wordnerd

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Re: Need to vent!
« Reply #28 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

Shari

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Re: Need to vent!
« Reply #29 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)