Surgery Update... (or look who's right back on morphine)

[Scottietottie]

Hi Lauren - Whew! What a weekend. The whole bladder bit sounds totally horrendous and I'm really sorry to hear you are having so much pain from a procedure that was meant to help.

Your neuro sounds pretty useless but will maybe come good. I hate docs who won't even express an opinion however. There are some who just seem to be scared to say anything without back-up, watertight, evidence.

The whole psych consultant bit sounds positive and it was a really good idea to get her to talk to your Mom and hopefully get her to rethink her/your situation. It sounds like your Mom could do with therapy sessions too to get her head sorted out a bit.

I salute you for spending that amount of time and energy doing the physical therapy. Especially as it is causing you such pain. You must have felt completely exhausted after a session like that. I hope the therapists noted the pain that it was causing you and pass the info onto the docs.

I agree with you that your sister should have passed your message on.

I hope you have a turning point soon and that the pain abates. You're having far too much to contend with.

(((((((( Lauren ))))))  Take care - Scottie

[Shari]

Hi Lauren~~I am only home for moments to check my birds etc. and pop on briefly here.  Then I head back to my daughters to help out.  I wanted to make sure to give you a special "HUG" today!!!!!!  Take good care sweetie!  ~~Shari~~

Scottie~~As allways you are inciteful and sweet!!!!!!

[Katybarstool]

Hi Lauren

You have been given lots of good ideas, so I won't try to add any more. I would just like you to know that I read your news every day, and continue to send you positive vibes.  Hope you are feeling a little better today.

Kathyx

[mompain]

Lauren,
After thinking about some of the things that you have written and how others have responded, what do you think about the idea of having your mom and sister read all of this?  It sounds to me that maybe this would really open their eyes as to how you feel about it in ways that you can't always say to them.  This might not be an alternative, but oftentimes if someone can read something instead of it being said, it makes it easier to hear and makes it hit home to a greater extent.  This may be what mom and sister need.

I wish you continued good luck and better health.

[Pooh]

Hi Lauren,
Wish I could wave a magic wand and make you all better.  I'm sorry about the problems you have had to endure lately.  Maybe the therapist can get through to your Mom and sister.  I sure hope so.  I'll bet it would make a big difference in your life if you had their support. 

Take care and keep that wonderful outlook you have and I hope you get out of there real soon.

Hugs, Pooh

[quiger]

Word,

I too have been following your plight and I am sorry for all you are going through.

I think Irish made some good points about assisted living. I am not sure if your finances could support that, but it might give you a better sense of independence and still allow you the assistance you need. This of course would also take some of the pressure off your mom so maybe she would be more involved with your life. It might be nice for you to have people, especially young people, around to talk to and spend time with.

Whatever is decided, I hope you start doing better soon. We are all thinking of you.

Hugs,
quig

[Care]

Hi Word,

I just caught up with whats going on, my daughter and her hubby came from Atlanta to visit us.  I had fun!  I wasn't sure if I remembered how to.  My mom has deteriorated in the past two years.  She is 84 years old. She gets confused, forgets everything and I have to be with her all the time.  I love her very much but it can be difficult.  She fell 2 weeks ago in the middle of the night.  She tried for 2 hours to get up and finally yelled for me at 5:00 in the morning.  I am not big enough to get her up so after an hour of discussion and a cup of coffee for both of us, I called the paramedics.  That was hard for both of us.  I was sad she had to endure that. My situation and how I feel may be somewhat "a parallel" of your situation.  I find myself at times angry.  Then I feel guilty, but I finally realized that I am not angry that my mom has become so dependent on me.  I am angry that she is getting older.  I love her dearly, but seeing her health decline, showing signs of dementia is hard.  I am angry that it is happening to her!  I want her to be healthy and intact cognitively.  I want her to be my mother.  I am becoming hers. It's hard.  At times I would like to escape it all and pretend all is well, but it isn't.  Life is conflict with a bit of joy interspersed.  I prefer interspersed.

Your mom may be angry that you are ill, not angry at you but angry at your illness.  It's hard to deal with even when you love someone dearly.  So her anger is not at you but the illness/situation.  It is a very normal feeling.  I also agree with Irish.  I feel you would be happier living somewhere else.  It would give you more control over your life, your mom would feel less stressed and a better relationship could ensue.  It's hard Lauren even when someone loves you dearly.  Somehow we all have to climb out of the "black hole" as I call the emotional side of a chronic illness.  But once you find your way, and you have to do that yourself, the other side can be beautiful.

We care for you Lauren, very much.
Many Hugs...
Care

[Tamik]

Lauren,
OVER 1000 - that is the number of views on your post! Feel loved and supported!   We are right there with you!  Tami K

[wordnerd]

Thanks everyone for the support and suggestions!  I have thought about assisted living, but my research hasn't turned up any place that would really suit me.  And everything is so up in the air right now!  We have to move out of our current 2 story rental house in August, so my mom is apartment hunting for a place for me and her.  But it's hard to know what my health needs will be then.  Right now I'm practicing using a wheelchair to get into the bathroom in occupational therapy, but there's no way I could get a wheelchair into my current bathroom.  But I can't walk yet either.  And my doctors don't know what's wrong still.

Today was better relationship wise.  My mom came for the afternoon and evening and I think we both enjoyed each others company.  We also had a talk and I think we get where each of us is coming from much better now.

I had 3.5 hours of therapy again!  I woke up this morning feeling horrible.  My BP was 90/40.  A record low for me.  I'm always almost perfectly 120/80.  The nurse retook my BP 4 times until it was 115/50.

I had a psychiatrist come and follow up about the other night.  She's going to try and get me regular sessions with a psychologist while I'm here. Yay.

I pushed myself through my PT and OT and slept in between.  I haven't been able to eat much since yesterday's lunch.  Pancreatitis or something is making me not hungry and nauseous.

But everyday ends up being an adventure!  During my last PT session I was chatting with the therapist while I did my exercises and all of a sudden I felt sooo tired and could barely keep my eyes open.  I kept going anyway.  Then the therapist asked if I was okay because myy lips were turning blue.  So I sat down and rested and then finished the session, but my eyes started fluttering uncontrollably.  I've had this happen 2 other times and one of them was right after my oxygenation dropped during a procedure.  The other time I was dehydrated.

The nurse paged my useless stupid neurologist.  He came and basically said that it was nothing to worry about and that it wasn't a seizure.  When my mom asked what he thought was causing my eyes to flutter like that he said that he can make his eyes blink quickly too... I still can't believe he said that.  My mom then asked about my lips turning blue and if that could be all in my head too since I didn't even notice my psychical therapist did and what about the other seizures I'd developed a few months ago.  He responded by saying that he doesn't think anything is neurologically wrong with me and that its probably from my meds.  So my mom asked why he put me on anti-seizure meds then.  He wouldn't answer but said instead that he would order an EEG.  I asked what the point of the EEG is since the last EEG showed epileptic activity and you said it was probably only my meds and that "probably" implies that it could also be something else, so what is that something else?  He just repeated that he would order and EEG and recommend we get a second opinion for our piece of mind.  Then he left.  I am sooo mad.

So I had my EEG.  I still feel horrible.  Last time I checked you can't fake a low BP and make your lips turn blue on command.  As for the eye fluttering... when it happens my eyes spasming so hard looking up that its painful.  I know violence isn't the answer but right now I want to throw something big and heavy right at my neuro's head!!!!

Also the urologist never showed today to check on my catheter.

I'm really worried about my lips turning blue.  That's never happened before.  I didn't even feel short of breath... I just felt so so so tired and my chest felt too heavy to take a deep breath.  Normally during PT I start breathing hard but this time I wasn't and yet I didn't get that feeling that prompts you to take deeper breaths.  It was so weird.

Anyway all of my rehab people got together today and decided that my goal is to go home in 10 days and by then be able to walk 50 feet with 50% help and use a wheelchair the rest of the time which as I already mentioned won't fit into my bathroom and barely into my room.  If I'm not better enough with my other health issues after 10 days then I might have to be admitted back into the regular part of the hospital.

I feel like I'm getting no where fast.

Thanks again for all the kind replies.  I read them all and they made me feel very comforted to know how much everyone here cares!  And the view count... wow!  Falling asleep at the keys....

*warm fuzzy hugs*

-Lauren

[Tricia281]

Wow Lauren, you hang on in there and don't let anyone keep you down.  During your low points, remember what a strong and resilient person you are and that 'this too, will come to pass'. 

Take care,

Triciaxx

[Pooh]

Hi Lauren,
Sounds like you had a really rough day.  As Tricia said "Hand in there, this too will pass".  With all the people praying for you and supporting you, you have to do your part.  Don't let it get you down.  I know...........................it isn't me going through all that crap, but the sooner you get done, the sooner you can out of there. 

We really miss you here and will be so glad when you are back.  I'm still searching for that "Magic Wand" and if I find it, you will be the first one I try it out on.   I promise.

Take care dear, and fight like heck to get well, we're waiting for you.

Hugs and God Bless,
Pooh

[Pooh]

One last question, can you give me your address at the hospital.  Either here or in a PM.  That way we can send your cards directly to you instead of home and then have to have them brought to the hospital.

Pooh 

[Tamik]

I would like your address too!   Tami K

[Skylar]

Hi Wordnerd - I love you name.  I'm new here and just found this post. I'm going to have to pick my jaw up off the ground when I'm finished because I can't believe all the trauma you've been through. I hope you find some real answers and a road map to help you find you're way back to feeling better and out of this nightmare.

I'm also certain that a lot of people must be reading this and just don't know what to say to help you feel better, but I'm sure they are wishing that you feel better soon.

I noticed awhile back someone talked about candy etc. What is your favorite treat? How about a food fight party - can I throw some whipping cream your direction? I'll also show up with mango lassis for everyone to drink.

Skylar

[lynnmarie219]

Angels always comfort me........Here's some to watch over you!