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

[kimbo]

Word,
My mom left when My sister and I  were 7 and 8 years old. Dad gifted us with a step mother at age 9 and 10, that provided yet further deprivement of relationships.
Word, I know too well about expectations and dissapointments. God Bless you.
I am the mother of two wonderful daughters, ages 24 and 26. 
Now what is very funny; My sister and I both had reoccurring dreams in our early 20s that we had babies and had miss place them, could not find them. We laughed together about this. Although it was a true fear in us both.
I was 27 when I had my 1st daughter, within 2 weeks after her birth, I told my husband I am ready for another baby, 16 months later my 2nd baby was born. I love being MOM. And now Memaw. Not once did I miss place my children.
Even though I have been absolutely totally blessed in my on going life. I still fight disappointments of old.  I understand.....
I hope you receive support where ever you can and continue to bless us as we bless you.
You are uniquely made in your very being, special and loved by an Almighty Heavenly Father.  I Pray you feel his arms around you.

I LOVE MIDNIGHT MILKYWAYS   UUUUMMMM!  AND WARM CHOCOLATE COOKIES MAKE ME WEEK IN THE KNEES!  So I should save you from all the warm chocolate chip cookies of the world, because your knees do not need the weakness they could cause.

I'm thinking I would sneak a furry little puppy in to see you.  How bout that!!!!   yeah!

WORD  you are a blessing.     Get strong  and stay strong.

[JannaLee]

Darling Lauren,

I am worried this morning why you are not here!  Dear Lord in Heaven!  I hope you have not had a terrible episode!

Sending lavish "mother love" and solicitous concern!

Janna
P.S. At this point in our "Lauren Party" I'm feeling we could all use a nice big crock of chicken noodle soup.  We will need some protein to counteract all that sugar.  Because by now, I'm sure I've been told to "keep your voice down!"  I can imagine we've got each other laughing a little too much.

[mompain]

Okay, where is wordnerd?  I too am getting concerned.  We need an update if at all possible.  Let us know soon, wordnerd.
You are in our thoughts and prayers.

[wordnerd]

Hey everyone!  Just checking in to let you know I'm okay!

I had a bad two days.  Yesterday the rehab therapist had me try and walk but since I couldn't put any weight on my legs I was hold all 200 pounds of myself up with just my arms on my walker for 30 minutes while she slid my legs forward one at a time and called it "walking".  After I finally sat down I couldn't move my arms or hold up my head or upper body, so everyone was worried that my arms were now affected.  But I finally was able to start stretching my arms neck and shoulders this morning and now I can move again.  But I feel like I have whiplash (I've been rear ended twice and it felt just like this).

On top of that apparently my primary doctor has all the other doctors telling him that my leg problem is all psychosomatic.  He doesn't agree because its affecting my bladder also, but he says there aren't many more tests we can do (besides a repeat EMG).  And if that doesn't show anything he'll have to consider treating me for a somatic disorder which he said he would still take very seriously.  I asked about the fact that it sometimes takes years for AI stuff to show up in tests, and he agreed saying that when he was a resident he was only able to diagnose a 90 year old woman with the AI disease she had for her whole life after she died because all her tests were negative.  But he also said he won't treat my leg issue with meds unless there's a positive test result because he doesn't want me to have a horrible side effect if he's wrong.  But if it is AI attacking my nervous system he wants to start very aggressive treatment.  So basically he's all over the map which is very stressful for me.  He's a very all or nothing kind of guy.

In the meantime my mom and sister came over today for 2 hours.  Most of the time they talked about what they were going to go do after they left and about my cousin's wedding plans which I won't be able to attend in NY because I've been so sick.  Then they left to go have fun at the movies and I expressed my disappointment that they weren't staying very long and how lonely and alone I felt.  And they both got mad at me.  My mom said that I want her to have no life and be here every second but she's not willing to do that.  And that I was being too demanding and unreasonable and just because I'm sick and in the hospital she is still allowed to only come for a little while most days (and I should be grateful that she came at all) and she should still be able to go on vacation and out to the movies and doing fun things.  I said I felt like I should be higher priority than going out and doing fun things with her friends and she said that I'm not a child... I'm a big girl and should be able to be alone in the hospital most of the time.

Anyway I just got so upset at this point that when they left I was having intrusive thoughts of self harm.  So I called my mom to find out if I could have a phone session with my therapist because I needed someone to talk to and be supportive and she said no and hung up on me.  And then I called my sister to explain why I needed to talk to my therapist and ask my mom for me.  I was so upset that I blurted out some of the intrusive images I was seeing so my sister hung up on me and called the nurses station to tell them I was going to try and strangle myself with the phone cord (which was one of the images that I blurted out that I was having).

So then the charge nurse and my nurse came in and I explained what was going on.  And luckily the charge nurse was really really empathetic and understanding.  And she had met my mom and already suspected I wasn't getting much emotional support even while my mom is here (which isn't much of the time).  So she stayed with me and talked to me and that really helped calm me down and have my feelings of being abandoned by my family (and my friends) during such a difficult time in my life are justified.  And that I'm not too demanding to feel like my mom should have being here for me as a much higher priority than going to the movies or on vacation with friends.  I don't even want my mom to come anymore because she keeps reinforcing this idea that I should be grateful if she makes a little time to come for a few hours and its my problem if I feel disappointed if she has a life and isn't here every second of the day.  It just gets me upset over and over again.  Every time she comes and treats me like this and everyday I feel all alone and abandoned all over again.  So I don't even want her here if she can't be supportive.

And now since my sister called and reported that I wanted to kill myself the charge nurse just came in and warned me that she was legally obligated to tell the doctor on call who also felt legally obligated to call a psych consult even though she don't think I'm going to do anything which I'm not.  So now I'm waiting for the stupid psych consult to come.  And I'm hoping they aren't alarmist and understand what happened.  That it was just my OCD that got out of control for a while and instead of relaying my message to my mom so I could call my therapist and have someone to listen to me and support me for a while she called and reported me.  I don't know if I've ever felt to bitter towards my sister.

So anyway... don't worry!  Though things seem all messed up right now I'm ultimately okay.  I can move my upper body again thank god!  My intrusive thoughts of hurting myself have gone away (back to the normal random and benign ones that I don't mind dealing with).

Also I do have a UTI again.  I've been having soooo much pain... not to mention blood and protien in my urine.  So now I'm on Bactrim Double Strength for that.  Because of the infection and the arm thing I had the day off for rehab therapy, but I start again tomorrow.  I did manage to get some extra sleep this morning.

Thanks everyone for continuing to be so supportive.  I don't know how I'd do this without all of your unconditional support!  Take care!

-Lauren

[genko_b]

Glad to hear you are still hanging in there. I sure wish my neurologist could talk with your doctors, since I have a milder form of the very same symptoms. It does not sound somatic to me.

Genko

[wordnerd]

Genko - If you have any info that your doctor gave you about why he thinks its mononeuritis multiplex, I'd pass it on to my doctors.  I forget where you live... but I was wondering where your neuro is at... perhaps our doctors could talk or I can give him a call myself...

PM me if you want.

-Lauren

[Scottietottie]

Hi Lauren - that sounds like a horrendous two days indeed.

Don't be too tough on your sister. Imagine if you'd gone through with any of your threats and she hadn't called tyhe charge nurse to warn them! You obviously know yourself that you were not going to strangle yourself but it sounds as though your sister was none too sure. She wouldn't have been able to live with herself if anything had happened.

Now I don't know your Mum - and I don't know how old she is (could she be menopausal?) but you've said she's been going through a really rough patch with your Dad and she's also been going through a really rough patch with you. I know you're perceiving her as uncaring but I bet she's actuially worried sick because nobody likes their child to be ill even when their child is a grown woman. She is also quite possibly depressed herself. getting on a bit, on the brink of a divorce and wondering where he life has gone and what her future holds. Sometimes instead of crying, people display anger. I'm not saying this is good - but I know it happens.

I agree she's not handling it well. It's a pity you can't have a sort of family therapy session because that would help get things in perspective all round. when I was your age people didn't have hospital rooms to themselves here in the UK so we never got as lonely as someone in a room on their own. I had a room on my own when I had knee surgery and it has advantages and disadvantages.

When I was a kid in hospital we were only allowed visitors (including parents) for one hour in the afternoon and one hour in the evening. It was my Dad who told me he resented giving up his time to visit (I was 14 at the time) so I told him not to come back - and he didn't.

When my 3 year old had to have his adenoids out I wasn't allowed to stay in the hospital with him. I was allowed to be there day time but had to leave by 6 p.m.

Please don't take any of what I've said the wrong way. I'm really sorry you are suffering the way you are and I also think it's worse when you have no idea why what is going on, is going on and your doctors are obviously not sure either. I wish that you could have your mum do what you want and also that she wanted to work that way. I also hope that you get some answers and banish the infections you're being plaqued with. Is there any interaction between patients in US hospitals? I don't know about your system. It was always other patients that kept me sane during hospital stays.

Take care - Scottie 

[JannaLee]

I think getting your doc to talk to Genko's doc is a real good idea.

Lauren, it is a relief to see you are not worse than the other day...okay you are a very much worse for wear...but not latex exposed or some such other nightmare!

I support you, and your emotional troubles from all this are like many of the rest of us have.  The latex allergy and mysterious crippling leg/bladder symptoms are two gigantic stress-ors but when you pile on feelings of abandonment and loneliness I would imagine your physical symptoms are further irritated and psych. issues also act up!

It would be wonderful if the psych consult person would do a little therapy?

Please let us know if you start to feel hopeless.  Just a very gentle reminder that "this too shall pass" and you will move on to better things and new relationships in your life.  I mean look at us!  We are all sitting right here worrying over you my dear child and wise friend.

Janna

And I gotta add to Scottie's ideas~  Some people use "avoidance" as a coping strategy when they are afraid.  Could that be what your mom is doing?

[kimbo]

Lauren,
It's just good to hear from you. 
I hope as Scottie expressed, that maybe you find someone that is also in the hospital with you, to talk to. You could console with, give support and receive support.
I hope by now you have gotten hold of your therapist. I am sure this could help you thru the relationships and expectations.
I hope your DR continues to listen to you.
I am thankful for the advise of those on this forum. Your family here is a great resource of support.
You are a very important part of this family of support. You are strong and full of wisdom to contribute to many who seek answers here in this network of our health issues. You are an inspiration to many. I am sure that where you are now in the hopital there is some one in need of your strength and support.
WORD!  Get strong.  kimbo     

[JannaLee]

Lauren,

I just read back over my post just above Kimbo's and fear it may sound flip or as if I don't understand how unbelievably horrible things are.

Could you just have a "ditto what Kimbo and Scottie said" from me?

I am deeply concerned about you and do not want my words to be the source of any hurt, frustration or feeling of invalidation.

Janna

[lynnmarie219]

(((((((((((((Lauren))))))))))))))

Have just been reading about your last week in the hospital. I'm glad that you are now in the rehab area where things seem to be a bit better with the staff and less latex scares!

And I'm so sorry that your family support doesn't seem to be there for you right now. Is there a way, as the others have mentioned, to get together with other patients in the unit you are on as a support group for each other? Maybe that is available as many of the patients in that type of rehab setting are there for an extended period of time for physical and occupational therapy and may also need some emotional support and friendship.

How about the volunteer system? What you said about that one volunteer who sat and held your hand touched my heart. Is there a program with the volunteers set up for visiting or doing activities with patients? Just a thought....

You said you had a wonderful view from your new room......what is it? Is it a peaceful view that can help you to relax when needed and maybe help you to do some more of your beautiful writing?

Hang in there.....we are all here for you in spirit!

Lots of hugs to you.........

[Tamik]

Lauren,

Just wanted to send love and light your way... i am thinking about you as I do every day and am hoping you find peace in your chaotic situation. You are an amazing woman. Tami K

[genko_b]

Hi Lauren:

I sent you a PM about my doctor.

Genko

[wordnerd]

Wow what a day.  Saw my neuro bright and early.  Who needs an alarm clock if your doctors are going to come wake you up at 6am?  He is really upsetting me.  He won't answer my questions or explain his thought process.  Apparently the only test left to do is the repeat EMG in one more week and then only an MRI if I get the stimulator removed.  Everything came back normal he said so just focus on PT and it will get better.  Just focus on PT and it will get better.  This is his all purpose answer to everything.  The only different answer was when I asked if it might be AI related.  All he would say to that was the tests for MS were negative but that doesn't 100% rule out MS but he's not a rheumy so he can't really comment on anything autoimmune.  It's really infuriating to have my already inadequate sleep interrupted for such a pointless conversation.

Next came the psych consult.  She was really nice.  She understood what was going on with me.  She's going to try and get me more psychological therapy while I'm here.  She also called my mom to let her know how I was feeling... I asked her to because I thought it might sound different to my mom coming from someone else.  It did.  A lot of crying (a bit of yelling) later on both our parts (mine and my mom's) I felt like she understood how I felt a lot better.  I had to keep reassuring her that I don't expect her to be here every second and have no life besides this and no downtime because that is what she perceives that I want.  I really just want to feel that she's not putting her social life ahead of me all the time.  She said that if I'm going to continue to be sick and in and out of the hospital indefinitely I can't expect her to prioritize her social life second because its just too much stress for her with everything else going on and she wants to have a life.  I pointed out that if me being in the hospital yet again is so overwhelming to deal with for her, imagine how I feel since I can't take a break from dealing with being sick and the same family issues are very stressful for me too.  I still need just as much if not more emotional support.  She seemed to get that.

Her anger is mostly that she feels guilty if she isn't here and she holds me responsible for it.  She doesn't want to be here but she also feels bad that she's been pretty absent during this hospitalization.  He only way she can reconcile both feelings is if she can blame her feelings of guilt on me being too demanding and tying to guilt her.  I also apologized if I sounded like I was trying to criticize her because I didn't want to do that.  I just wanted to express how scared and lonely and abandoned by everyone if felt (my friends included) not just her.  And I told her I appreciated that she's really been the only person to come on a regular basis.  I also made some suggestions about things we could talk about or do that wouldn't make her feel so stressed by me needing to vent and that also wouldn't be about fun things everyone is doing without me.

Anyway she was much more receptive after she talked to the psych consult and she's coming tomorrow.  My dad came today.  It was... interesting.  We can't talk about anything concerning my health situation except for the very immediate concerns like ow my urethra spams are really painful right now.  The biggest problem though was that he kept going out to get the nurses every two seconds and making them really annoyed and mad at me.  He's so anxious that at the slightest problem he's heading out the door for the nurses and I'm trying to get him to sit down so I can use the call light politely if necessary.  The charge nurse who was so nice to me last night finally lost it with him and told him off.

I had another 3.5 hours of PT and OT today.  The worst part wasn't the therapy itself.  Luckily I didn't have that same stupid physical therapist who made me hold my body weight up for so long that I strained my neck, shoulders, arms, and upper back.  My therapists today were much more reasonable about how to work on getting leg function back without injuring another part of me.  But every time I would move my legs (or the therapist would move my legs for me) I was having horrible bladder and urethra spasms that triggered blood to come down the catheter.  On top of my UTI.  Also the super dry hospital air finally caught up to me today and I've had this stupid hacking cough all day.  And every time I cough it also triggers spams and bleeding.  But I pushed through all my therapy anyway practicing standing for a few seconds and sitting back down over and over.  And other leg exercises.  And even sat up in a chair for 45 minutes between two sessions of PT despite my bladder's protests.

Unfortunately I was not able to rest afterwards because all the blood that had been draining down the catheter clotted inside the tube.  I didn't realize this for 3-4 hours of agony.  Then finally I had such a bad coughing fit I started leaking blood and urine out around the blocked catheter... which prompted me to see that no urine had drained out the catheter in hours despite all the water I'd been drinking.  I had a heck of time getting the already annoyed and busy nurses in to see that it was blocked by clots and clean me up because by that time I was sitting in a puddle.  But before they could do anything about it I had another really bad coughing fit that actually pushed the clots through and then let out 800 cc of bloody urine that had been backing up for hours (sorry if this is way too much info   ).  I felt sooooo much better after that because all the backed up urine had made the spasms so much more painful.  But the same thing happened again a few hours later.  I had to have my bedding changed a second time but luckily another coughing fit pushed the clots through again.  And my urologist at this hospital who was treating me before I went to the other hospital for the stimulator is coming tomorrow, so that's good.  Hopefully the Bactrim will kick in and it will stop spasming and bleeding soon.

My doctor also ordered atrovent by nebulizer (instead of inhaler) followed by a 20 minutes of mist through a mask every 3 hours.  It's really helping the cough and gave me my voice back (I was so horse for a while today no one could understand what I was saying).  Also my primary doctor came in and talked to me about my legs again.  This time he didn't make any mention of it being psychosomatic at all.  He did say he hopes that whatever is wrong will respond to the rehab program and get better on its own and that he didn't want to start me on some heavy duty immunosuppressants without any tests showing that AI is the cause.  I agreed with him and he said that if I don't get better from the rehab and especially if the EMG is abnormal when we repeat it he will start aggressive treatment.  He said either way he wouldn't do nothing and ignore my leg problem whatever the cause.  This made me feel a lot better.  Especially after getting nothing out of my neurologist.

Yesterday when he was here he was really mad that I had the day of therapy and was catching up on my sleep.  He told me he'd have the nurses to strap me to a chair if they have to because he doesn't want me in bed when its at all light out.  He says this to me way too often... like every time I see him.  He has some idea that when I stay in bed or sleep during the day its because I'm lazy and he has to be tough with me and push me.  He doesn't.  I have a hard enough time listening to my body and not overdoing it to the point of making myself worse without him yelling at me.  But he's a very good doctor and willing to take on my very complicated case, so I put up it and try not to let it upset me.

Anyway he didn't even bring it up today so apparently he read how hard I'd been working in my chart and was finally convinced I'm not lazy.  Or maybe my response yesterday about being the type of person who when I used to be able to take really long difficult hikes and I would hit that point where I felt too tired to go on, I would take that as my cue to double my pace and push twice as hard to the finish.  So maybe that helped him understand how hard of an adjustment its been to try and not over do it and how motivated I actually am.  Either way I was happy he didn't comment on it today for the first time ever since I started seeing him.

As for my sister... I'm really mad at her.  The reason I was calling her was to try and okay a phone session with my therapist because I didn't want to act on any of my intrusive thoughts but I needed some help.  But instead she refused to relay the message to my parents and demanded that I call in the nurse that second.  I told her I was going to call the nurse and ask for a xanax to help me calm down but could she please ask mom and dad for me first so I can try and get ahold of my therapist before its really late at night.  But since I didn't call the nurse that second she hung up on me and called my nurses' station.  She was angry at me for getting upset when she left with my mom after only a few hours and this is how she handled it.  It wasn't like I was refusing to get someone to talk to or anything.  Quite the opposite...  My sister can be very passive aggressive like that.

Anyway... now for some Q&A   hehe

My mom is way way past menopause.  She's 58 now and I think I remember her going through it when I was in high school almost 10 years ago.  But she is depressed and very stressed right now.  She also doesn't know how to be empathetic to those closest to her.  And I think she still wishes I'd go back to my old role in our relationship where I would mother her and listen to her and help her with her problems (even with my dad) like a friend or therapist.  I did that from age 5-17 and I never plan to again.  But she remember a Lauren who was seemingly needless and perfect and catered to her needs all the time.  My sister was always the needy one growing up and my mom is used to that and doesn't have a problem with my sister needing things from her as her daughter.  But she has a big problem when I need things from her or want her to be emotionally supportive.  So... yeah.

Also Scottie - I can't believe that you couldn't stay with your 3 year old son!  When my sister had a spinal fusion surgery when she was 7 they let my mom sleep in her room with her.  I might try and contact the volunteer program again tomorrow and see if they have someone who'd be up to keeping me company for a while sometimes.

Janna - Yes the stress of my family issues and the latex and not knowing what's wrong with my legs and ect. certainly don't help!  For sure they don't help  all my already existing autoimmune issues!  And don't worry you didn't sound flippant or anything.  I do have a very strong sense that no matter what happens however good or bad, I will ultimately be okay.  And just to clarify I don't actually want to hurt myself.  Even when I did cut a few times as a teenager I never wanted to.  The intrusive images can just get so overwhelming, but I know that they are my OCD and not me and they will go away eventually.  But they are very upsetting and I feel a lot better if I don't have to deal with those horrible intrusive images and impulses alone.

Kimbo - As much as I appreciate all the amazing support I've been getting from everyone here (I can't even express how much it has helped me), I can't wait to get this behind me and back to supporting everyone else.  I think that ultimately that is the most healing emotionally for me, so I try when I have the energy to read and respond to some posts and support everyone else here.  Thanks... gosh I'm tired and can't word this right... thanks for sharing the positive impact I can have towards others.  Well that doesn't do how I feel justice at all so let me just send a *big hug*!

Lynn - The view is really nice.  I'm on the 7th floor which looks out on part of the city with mountains on the border.  It's still pretty green since we've had some late rain so the mountains (well more like big hills) still look lush with plants and grass.  Soon they'll been turning brown as the summer sets in.  At night I can see the lights of the city.  It's really pretty also.

Tamik and everyone else who continues to be so supportive (and made it through my ridiculously long posts) thank you thank you thank you!!!!

*hugs all around*

<3 Lauren

[irish]

Lauren, I am sorry that you have had such a rotten holiday weekend. I imagine you Mom thought she was just dying to have to sit in a hospital and visit again. I think you will have to continue to develop a very thick skin where you mom is concerned as she really sounds like she can't cope with stressors in her life.

I want to express my feelings again about you find assistive living where you would have meals prepared, help with dressing, bathing and some transferring. You are too young to go to a nursing home and you need to have some staff and residents around you that can interact with you emotionally. I know that some assitive living have older people and some cater to a certain number of younger people. I will stress again the fact that you are having all these health issues and then to suffer from the lack of support of family is just the pits. You would find that staff of a facility can be like family. There is usually a certain number of turnover in staff but most places have some core staff members who are just great.

I would encourage you to call you social service/case worker at the hospital and see what can be done for you. The other thing that concerns me is what would happen to you if your mom would just decided to up and leave and move elsewhere. It would really leave you in a bind. It is times like this that cause a person to end up in an assitant living that is available at the moment and not one that you are really interesting in. Much of the time you have to be placed on the waiting list anyway. Good luck girl. Hang in there. Say a prayer and take a deep breath. Get some sleep and it will help your mind deal with these issues better. Hugs Irish