Author Topic: Need to vent!  (Read 10164 times)

wordnerd

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Need to vent!
« 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

Scottietottie

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Re: Need to vent!
« Reply #1 on: April 07, 2008, 02:13:37 PM »


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  :)
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Never do tomorrow what you can put off till the day after tomorrow!

ree031

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Re: Need to vent!
« Reply #2 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  :-*

ree031

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Re: Need to vent!
« Reply #3 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  ;)

quiger

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Re: Need to vent!
« Reply #4 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
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Pooh

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Re: Need to vent!
« Reply #5 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

YICKelly

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Re: Need to vent!
« Reply #6 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.  

susanep

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Re: Need to vent!
« Reply #7 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 :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

genko_b

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Re: Need to vent!
« Reply #8 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

maya

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Re: Need to vent!
« Reply #9 on: April 07, 2008, 05:32:09 PM »


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

Maya

wordnerd

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Re: Need to vent!
« Reply #10 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

Waldop

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Re: Need to vent!
« Reply #11 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

wordnerd

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Re: Need to vent!
« Reply #12 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...  ;)

Waldop

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Re: Need to vent!
« Reply #13 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

maya

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Re: Need to vent!
« Reply #14 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