decision difficulties

I hope you all had a fabulous and joyful Christmas yesterday.  Hope your hearts beat steady and stable and strong.  I hope you all enjoyed the time you had with your families.  Mostly I hope not one of you had a bad day – heart wise, health wise, happy wise, I think you all deserved a 100% day!  

Ok here it is.  I’ve had it and I want to go home.  I think today is day 40 in hospital – I have lost count.  Last night they lifted the isolation rule, so at least I’m not confined to my little room anymore and my little boy can come in and visit me again, so that is great news.  I think I’m just grumpy because I have a sore back and sore knees and hips.  Maybe I have just been here too long and its starting to get me down.

I feel like sitting here howling.  Scared they lock me in a padded room if that happens.

Am I ready to go home?  If the doctor asks me that question there will be only one answer – YES!!!  But is it true?  I can’t come up, even to myself with a straight answer.

My IV tissued last night and they could not find another vein – they have all been used up and short of a central line we can’t get IV access anymore – even the ICU nurses will no longer try I’m so bruised from all the IV’s, the ER doc has given up too, so I can’t get IV drugs anymore so anything I get here I can get at home.

I have oxygen at home, so I don’t have to be here to keep my sats up.  I can nebulize there same as here, I have a back-up tank so if we have no electricity (we have this a lot here in SA – its called load shedding and they switch off certain areas power to give other areas power so that everyone gets a turn at some point – when in Africa….) so oxygen is not an issue.

One major problem pain management.  The pain in my joints is so bad that I’m back on the narc injections.  We have found that the type of arthritis I have is Reactive Arthritis and its playing up badly – even now that the salmonella is almost gone (infection marker has gone from 860 down to 35 - normal is between 0 – 7 so we are in the home stretch).  Had a very scary experience last night with my back – it went into some sort of cramp.  I don’t have a word to describe it, but maybe getting a shock from cattle prod in the lower back area would be sort of the feeling.  The doc was with me at the time and he went so far as to ask if I’m sure I’m not pregnant and in labour!  Ha ha, very funny, but he said he’s only seen pain like that in women giving birth.  He says when you turn gray and start pouring with sweat and can’t breathe properly, its not the sort of thing you can fake – my pulse was racing - and its certainly not something he, as a physician, can ignore.  He waited it out with me (isn’t he great?) and gave me the morphine injection himself – said at least he was doing something to help but he doesn’t know why the arthritis is getting worse not better.  Maybe his wife will lend him to me for a few days, I met her and she’s lovely, and she seems just the sort of person who really would say yes to such a request.  Staying in hospital so you can get strong pain meds seems like a bit of a one-way street to me, but what if I can’t handle it with the meds they send me home with.  I have discovered that pain turns me into a monster.  What if it gets so bad it makes me nasty (I don’t mean physically) and short tempered with my son?  I can’t make him suffer because I’m suffering.  At least here I can get the meds and be pain free when he visits or if worse comes to worst I can send him down to the coffee shop for a milk-shake with my parents.  At home, well I’ll have nowhere to hide.

The other big issue about going home is honesty.  This sounds terrible but it is true (honest).  People never ask me a question if they don’t want an honest answer, no-one ever asks if their butt looks big in a certain dress.  In every aspect of life I am probably the most honest person you will ever encounter – but not with my health.  I always lie about how I feel, and the worse I feel the more inclined I am to lie about it.  Its so stupid I know, but if you are feeling horrible, your chest is tight, you are in pain, you feel weak, and someone asks how you are feeling, there is absolutely no way I’m about to say “well I feel truly awful, I feel sick, sore, miserable and generally just horrible – but thanks for asking and how are you feeling today?”.  See it doesn’t work for me.  That is taking my negative energy and transferring it to someone else.  I’m always going to say I’m feeling fine, or better, or much better.  There is not one single person in the world who I’m honest with when it comes to this issue.  I’ve tried and just seem incapable of change in this respect.  I also know that my family are fully aware of the fact that I’m lying to them about how I feel, they just don’t know the degree.  The doc is a bit harder to fool, his stethoscope can’t lie, but even with him I find myself giving him the vaguest truth.  He can listen to my chest and come to his own conclusions, so I try to ignore the how are you feeling question altogether.  The thing is, if I have an asthma attack I will not be able to ask to be brought to the hospital.  I’ll battle it out.  Seems to me that asking for help and being honest go hand in hand with me – never realized that before.  I will just keep saying I’m ok.  Last time it happened I almost ended up pushing up daisy’s, but I know that it will happen again.

The final issue about going home is weakness.  I am weak – not a little bit – a lot.  All this time being in bed, having these infections, being sick for so long have not exactly made me into a marathon runner.  I know when I go home I will not be able to stay in bed.  I hate asking for help, so if I need something I’m going to get up and get it or just do it myself.  My dad (aka The Health Police) goes postal when I do it.  He’ll catch me making coffee in the kitchen and go spare because I didn’t ask my mom to get it for me.  It makes me feel like an invalid when I am unable to do things for myself, and I can’t help myself, I just do things without thinking about it.  I know I’m going to get stronger slowly, but it will happen.  I’m just worried that I’m not strong enough yet.  Last night after I had a shower I had to lie down for at least 10 minutes because I was so totally exhausted and thought I was going to pass out

So folks there you have.  The truth about Thinline.  Maybe someone out there can offer me some advice!

[PikaPika88]

Hi Thinline.... I send my hugs, a lot a lot of hugs...  to you.  Hopes you feel better and heal quicker.

It is stranged.  My dad just hold me in time when I was fainted.  (Every fever, my heart went mad... just got down the bed, few steps would faint.... ).  Only the one, no one caught was in the hospital ward..... BANG!  My head had built a multi complex!  That's what the doctors said.

I think the best you stay in the hospital....  The little one might be very upset when he sees his mum sick like that.  (I'm very worrying if I see my mum sick.)  He might be very scare but unable to express.  You don't know when he cried in the bed, under the blanket......  That's what I did!  Could you ask someone in the hospital and give you a massage or relaxation?  I got a physio came up and massage my back, sometime was a nurse.  I give you a hint.. it relieves pain... and sleep well also.

You got the doctor with "HEART" and has given you a silent "HUG"!  Mine doctor (Private doctor=Paid a big bulks to do my angiogram.)  He stayed at the door way, dipped the head in and spoke to me... then ran away!  No!  Not ran - flew away!  He apologized to me that he made a mistake in my echo.

Well, as I know in the Western Countries, when people ask, "how are you?"  You got to answer "Fine".  You cannot give any complaint in this stage!  It was told by my English teacher in Melbourne.  ???  I asked her, what do you say when you feel very sick and crappy?  She said had to answer, "I am fine, thank you!"  Then I am a lier!  

Thinline, big HUGS to you!

[ireneo]

I know you're anxious to go home but the truth is you are a temporary invalid. You've been in bed for so long your muscles have weakened and your stamina is not good. Is the hospital anxious to send you home? Is there some kind of rehab you can do while there - walking the halls for example.

I know you don't want to ask for help but I think someone should stay with you for a few days at the least to keep an eye on you till you get some strength back. It won't help if you do too much, get light-headed and pass out. You would probably be willing to help family or a friend if they were this sick. Give them the joy of being able to help you this time. Yes, you should do what you can but give your body time to get going again.

Take care of yourself right now and in no time, you'll be taking care of the family too. Be good!

[bonnytiz]

Hi thinline, sorry you are still having all these problems, I remain positive that you will improve slowly. I think for the time being you  would be better staying where you are, all things considered. It would be lovely for you to go home but I think you should wait until you are a bit stronger, if you wont rest at home (lets face how many of us Mums will) if we see something that needs doing we struggle and get it done rather than ask someone, then collapse in a heap afterwards!!
Your doc sounds lovely, Im glad you have got a nice one it makes all the difference.
Its lovely that you can hold your little boy again, so that will make a difference to you, one step at a time, please wait until you are feeling stronger, it WILL happen, and keep being positive, the power of the mind is great!!
Lots of hugs and kisses for you.

[dolfnlvr]

Hey there. I think your arthritis is acting up because your immune system is on overdrive.  You suffer from rheumatoid arthritis, correct?  The "reactive arthritis" is a response to your body's immune system.  Actually, it's an autoimmune response that causes swelling in the joints.  When your body is on immune overdrive, as happens when battling an infection, the swelling and stiffening is worsened. Compound that with the inactivity due to your illness and you've got a nice recipe for "ouch."  

That said, I think you need to spend some time in the hospital building up your strength.  Start walking the halls, do some rehab, if they have it, and build up some stamina.  There is NO WAY, I repeat...NO WAY that a mom can go home to her family and lay in bed.  No matter how badly we feel, we find reasons to be active.  It is instinctual biology.  Therefore, if you have ANY DOUBTS then listen to them.  Have your husband bring your son for short visits at first, and build them up.  Perhaps even going for a walk with your boy at some point.  When you are feeling stronger, and your wonderful doctor advises you that home is better, then go.

The downside is that there are much worse infections laying in wait at a hospital then in your home.  However, if you are weak, and tired, and you know that you will not be able to convalesce (sp?) in your home, you are better off in the hospital, or in a temporary rehabilitation setting.  

I'm glad we are to the point of talking about this though.  It means that you are improving dramatically, and that's just such good news :-).  

Here's to you!!!!

[Thinline]

Thanks for the advice everyone.  Today I feel so much better I recon I'd be ok at home.  Just the pain issue is worrying me.  Waiting for the doc now to find out what he thinks.  Will let you know.  Dlfnlvr you sound like a very wise person.  If you were an animal you would be an Owl (although I detect the word dolphin in your name).  If you were an Owl and got sick or injured, Ireneo could fix you and nuture you back to health.

Pika, are you feeling better?