Scarey set-back

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/25/2008 1:09 AM (GMT -7)   
Over this last few months, mentally I've been doing really well. To the point of getting rid of any bad thoughts, and being able too turn most things postetive. Everything has been going well, and I thought I'd finally beaten things, and now things were going back in a positive direction, it would just keep going that way.
 
Things that used to truelly devestate me, like my muscle enzyme levels, just don't seem so huge anymore. I get upset and have a good cry, but then I've been able to go back to normal.
 
Yesterday however I had a confrontation with hospital canteen staff. Ended up accusing them of trying to starve and kill me (which, tbh is possibly quite true). Pointed out 3 people have had food poisening recently which i know of, because of them leaving food on the hot plate for 8 hours at a time. They won't let us have prepackaged food like drinks and sandwiches with our food cards like they used too. Ad I really don't want too have food they cook, as I just don't want to end up having to stay in hosp longer.
 
Anyway, I really really blew my top. To the point of all old thoughts coming back. I ended off storming off and catching 2 buses to nearest shopping center, as if I'd stayed on the ward, there were just too many tools for destruction.
 
Today I'm feelng absolutely devasted and don't know what too do wth myself. I thought I'd got over having tantrums this bad. I'd mistakely thought I could take on the world again, but this just prooves I can't.
 
Just recently there has been talk about having kids again, and just the other day I was talking with my psychiatrist about it. I could really do with her now, but she's on holiday all next week. I need to know why I suddenly feel this bad again.
 
I can't stop crying and I really don't know what to do with myself sad


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

Post Edited (Darkies Gem) : 5/25/2008 2:13:29 AM (GMT-6)


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40565
   Posted 5/25/2008 6:20 AM (GMT -7)   
When you see your psychiatrist again, maybe you should talk to her about a mood stablizer. I take abilify and it stops all the thinking of the past and the anger. It might be something that you want to look into. I chose abilify because there is no weight gain associated with this medication.

I can understand your concern in the hospital. It makes perfect sense, but your gut reactions is what I am concerned about. So mention that to her. It really helps me and takes the pressure off. Hope that this helps.

Luv and hugs, Karen.....
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/25/2008 10:56 AM (GMT -7)   
Thanks Karen, wil defiantely mention that.

I did have Diazapam at one bit, and was thinking of asking for that, simply because it knocked me out on a dose of 2.5. I think knocking me out when I get that bad is a good plan actually, because then I can sleep it off, and probably forget by the time I wake back up. If my normal chest registrar doc is on tonight, I might ask him, as tbh he'll do anything too shut me up sometimes.

Abilify, is it addictive? The problem I have with anything that helps really, is that my first reaction is too get addicted to it, and it hard to give it up if I need to stop it. That's why diazapam was stopped, too stop me getting addicted to them as my psychiatrist suddenly worked out previous meds, even though I wasn't yet hooked on diazapam.

I will mention it to her when she gets back from holiday. If I can't use abilify, she might still be able to suggest something else that will hopefully just stop me in my tracks.

Not really been much of a better day today. Again ran off and took a bus to shoppng center too get away, nurses weren't too impressed and mae me leave my mobile number, but ah well. sad

Hope you're alright hun xx


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 5/26/2008 4:21 AM (GMT -7)   

Hi Darkies Gem,

Im sorry this that all come back again. Diazepam is a good short term solution but as you say, it is addictive. As for abilify, im not 100% sure. I think it can be addictive but dont quote me on that. (I bet Navy knows though! Maybe she is the best person to ask) Hopefully this is just a minor setback and you will settle down again after a day of crying. Things would be boring if they always went according to plan right? 3 steps forward 1 step back, yeh? It still means your 2 steps forward... and thats gotta be a good thing!

Keep your chin up and try not to get food poisoning! lol (Id stick with the salad... its healthier anyway!)

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40565
   Posted 5/26/2008 7:10 PM (GMT -7)   
As far as addictive properties with abilify, I don't know. Your doctor or pharmacist would know for sure. Also you might be able to look it up on internet. It is a fairly new drug and my pill book isn't up to date. I really have needed a new one for a long time. This is a good excuse to get one.LOL...

I hope that your doctor can find something to help you. I found that with the abilify, it stopped my moodiness and obsessive thinking. I feel a lot better now that I am taking it. I hope that if you do get to take it that it helps you like it did me.

Take care, keep us posted
luv and hugs, Karen
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/27/2008 9:48 AM (GMT -7)   
Thankyou for the information. I have some clue what too be asking for now.

I still feel incredibly down. I've asked too stay in hosp 2 more days till the end of when my IV's should end. They said they were thinking of sending me home today 2 days early.
I know it means an extra 2 days of agro, until I'm released, and that it sounds odd that I'm asking too stay in for a bit longer. But, my reasons are that, I will be totally healthy when I go home, even if not mentally, I physically will be as healthy as I can be. Hopefully meaning I get 4 months before i next need IV's.

My lung functions gone up today, way above the amount they said id never get back above again.

I've really gone loopy, and can't stop exercising even though in agony. I just keep trying too wear myself out, but then the more I do, the more worked up and energetic I become.

I can't go near the canteen without shaking, so guess i won't be eating for a couplke more days. I'm hungry, but can't make myself go back too the canteen. I hate arguing with anyone, but then arguing to the point of making me this angry, I just can't deal.
We do get food brung down too wards, though they are small and cold and you have too order them 2 days infront meaning your not in the mood for them when they arrive.

Only 2 days too go though, then I can go hope healthy and hopefully get back too nearer happy again. I hate feeling this low, and this sad. I think this time though things are a bit better than the depths I usually go too. I can still think about everything and evaluate everything, and I'm in more control. I just don't like this feeling of having too have control though. I really hope there is a train along soon, to take me back too where I need to be.

Oh, also the ward is closed because of norwalk virus, looking it up, it can come from salads and food that's not been cooked right, or been left for a while. I really am sticking too prepackaged food and takeaways only now. I don't trust anything!
 


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/29/2008 2:50 AM (GMT -7)   
Oh, it's such a good job I'm going home today. I've pretty much snapped off everyone's head.

I can't let any little thing settle.

Last night I had a pop at a nurse. Every night she's been giing me piriton, but not telling me that she had. It was on my PRN side so it's meant to be prescribed when requested. But no, shes just been slipping it in. As I knew it was piriton and can recognise them a mile off, I didn't say anthing about it. Then, I checked my drugs card last night too find out she'd not signed to say she'd give it me all week.
I asked her why not, and she said 'why don't you trust me'. I blew my top asking why should I trust her. A few months ago when on 24/7 fluids, someone hadn't changed my drip over night, leving me 10 hours with nothing going through, when I woke up in the morning, my port a cath was blocked.
All she said to that was 'oh well you should have told us it was done shouldn't you'. Bearing in mind this was overnight, when I was asleep, I'd been promised it would be sorted and also, the usual machines they have too moniter the drip and beep when it was finished, they had none.

She just kept saying 'well, you should have told us it was done, it's not our fault'.
I am fuming, asked her then if she's ever had an op, ever had to even go into hospital, ever had 86% sats.
Then I said about the time they had slipped codeine into my meds, even though it clearly says I'm allergic too it.
Yeah, that's not there fault either, they're busy people.

I shouldn't give them so much critisism apparently.

I mean what if I wasn't me, what if I didn't know what every tablet looks and tastes like. What if, I had asked another nurse for piriton, and they'd checked my drug card and seen I'd not had any for a few days, so think it would be ok. What if it was a deadlier med like warfin or even my IV drugs.
They are lucky that I am who I am, and take notice of the meds they give me. They are lucky that there carelessness didn't turn into something worse.

I'm really flipping out again, I hope this all goes away when i get home. I've gone really dizzy. I'm just so angry!
Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40565
   Posted 5/29/2008 8:27 AM (GMT -7)   
I can't say that I blame you for being angry. These aren't just simple mistakes. She seems a little on the incompetent if you ask me. Plus the food issue. That is a little much. I am glad that you are going home today.

Let us know how you are feeling.

Luv and hugs, Karen
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 5/29/2008 8:59 AM (GMT -7)   
I too am glad that you are home. Hopefully you will be able to relax more and there will be less pressure (and better food!)

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/2/2008 6:57 AM (GMT -7)   
Everyone keeps dying:(
Sami, Harriet, my grandad, 19 year old Tommy one of our friends died 2 weeks ago. While in hospital one of my mates carla, her friends little 10 year old died of an asthma attack. I had to comfort her for last few days, and get numbers for her for her friend.
A family friend died last night after a 6 week battle with cancer
cookie my hamster has died today of a cold. Just got back from vets.

I wish the grim reaper would just slow down a bit so I had a chance too work round all this.
Eugh, I've gone soo numb again:(

Paul's finding it really tough too, but I don't know what I can say too him, as I'm just trying too keep it together.


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40565
   Posted 6/2/2008 8:16 AM (GMT -7)   
You will be just fine, I had a time where I lost 5 family members in a years time and I didn't think I was going to make it through, but I did. NOw when I look back, I still don't know how I got through it. But as I said, I did. We just seem to find a way to keep going on and I know that you will find that way.

I am so sorry about your friend's son. That must of been so devistating, she is lucky that she had you there to help her through it. I am so happy that you are home now, you can get some type of normalcy back in your life. I hope that you are doing well.

Take care, keep us posted on how everything is going. We are all here for you.

Luv and hugs, Karen...
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/2/2008 2:52 PM (GMT -7)   

Gems,

I am so sorry and I do understand how you feel.  One year I had what I referred to as my funeral wardrobe.  When someone dies we are reminded of our own mortality and that can be very frightening.  We also grieve for the ones who have died, even if we did not know them well we identifiy with their families.

Loosing a pet is a great loss, our pets love us and never judge us so seeing one die is traumatic.  I know, I lost one of my dogs last winter. sad

You also are in an environment where you see more people die.  As a nurse I saw alot of that and I cried with more then one family.

I think it is important for you to take some time and just be in the moment, don't dwell on the past, mourn your losses and then remember these people you loved would want you to be happy.  I know this feeling well as I try to tell myself the very same when I am feeling down.  I know my Father would want me to live a good and happy life.  So I sometimes talk to myself and tell myself I am fine.  This is my time to be alive and I will honor the ones who have gone before me by living life well.

Be kind to yourself, Gems and keep on talking to us.  Let out your sadness and fears.

Love to you my gentle friend,

Kitt


 

Kitt, Moderator: Anxiety, Panic & Depression 
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/4/2008 2:40 AM (GMT -7)   
This just isn't good.

Yesterday morning, I had a major health upset that I've never had before. Involving a hell of a lot of blood and clots and all things nasty really, and directions from NHS direct too stay home and rest, drink loads of water and ring back in 3 hours.

Being the clever sausage that I am, I decided I had too make my appointment with my psychiatrist. It was an appointment with Paul and my cf nurse, too discuss babies and the impact on my health and such.Oh, and how likely I am too get post natal depression. I decided 2 hours on a bus, that's pretty much resting. I could drink loads of water, and by the time I got upto the hospital, I could pop into A+E if things were bad. Got there and stomach cramps started, I'd been told too ring NHS direct or go to A+E should any pain start.

Still carried on with my appointment. Don't know why, as I decided not too mention it to this psych and nurse, so they just thought I just wasn't listening. Rather than being too out of it too listen. Anyway got through appointment, I've probably taken in all of 40% of what was said. Mentioned it to them as I was leaving, but didn't really go into detail. Just said blood loss, I'll be fine.

Paul then thankfully decided too get it into my head, I was a lot worse, I should go too A+E, as we had a nice long 2 hour journey ahead of us.
A+E were shocked-why we were there too begin with, why hadn't we told CF team, what the deal is with having too tell the cf team everything anyway. They gave me painkillers, the blood wasn't soo major now anyway. I got home ok.


Why on Earth I put myself through all that though is now a mystery. I can't really remember my emotions at the time, or what I was thinking. When it first happened, I know my first thought was, oh my god maybe I'd finaly managed too get pregnant and now I'm having a miscarriage. Maybe that's why I felt the need not to mention it too anyone that could help, for as long as I did.

This is the bit I hate most about my head, it just does crazy things, but gives me no explanations for anything. At times of panic, I have no control over what I do, I just do things and then think about them later. This could be doing things like avoiding certain people, too harming myself.

Trouble for me, is I'm brilliant at analysing the past and knowing what should have been done. Get me too analyze the future and I can't do it. My psychiatrist is currently trying too make me think about how I will cope with a baby. My brain has shut off, I don't now how I'll cope I just will. I won't get post natal depression, not being able too have kids, was one of the original triggers of my depression. I really can't imagine how having a baby could trigger anything but happiness. This is what I live for. I've never been good at anything else, but I know that with a child in my arms, I would run too the end of the Earth to keep them safe and happy. I can't answer how I'll do that. I just will.

I have too be prepared for all this, for when I go too see the gynaecologist. Because he's going too ask all these questions, and I'll have too answer them. It's just making me scared though, what if I answer a question wrong.

This has turned itself round quite quickly huh? Maybe I took more in than I thought.

1 day left of college before we break up for the hols. Thankfully the hosp and scope are keeping me busy. scope have meals and alsorts coming up too keep me busy, plus my mentor training will start soon. The hosp, I have 3 appointments with my psych, one with my neurologist, two with my physio, one cf clinic appointment. My diary is full to the brim for the next month! How, I'm still getting chance too think is beyond me.

Keep looking into cookies cage, am going too have too move it I think. I'm not allowed another hamster now. cookie was bought too get me over the death of my little sunny who died last year. Now I just miss them both like crazy instead of just one of them. sad I know they're only hamsters, and I didn't expect them too last forever, but it's still upsetting that they're now gone. 

Still waiting to find out when our friends funeral will be. You're right about having a funeral wardrobe kitt. I have a few outfits too pick from now.

I thinks it's just such a shock, as before august last year, I'd know 2 people who had died. Also, I don't think seeing people being whisked by at 6am in a bod bag, while in hospital as helped feeling so sad about people dying. The only thing that's helping, is thinking they are going away too be angels, in a land I can only dream of.


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

Post Edited (Darkies Gem) : 6/4/2008 3:55:55 AM (GMT-6)


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/6/2008 10:25 AM (GMT -7)   
I feel as if I'm on a landslide again. There are no breaks too slow things down. No way too stop and take a rest.

On Wednesday I fell over in town. My legs just feel like jelly. I woke up this morning, and was in so much pain. Still, noone can explain too me why things have turned this bad again. They have booked an appointment for me too go up there on Monday, as today there was a full clinic and there was a cross-infection problem.

I've also had major temp problems today, and yes the hosp do know this. At one point pouring with sweat and red hot, while the thermometer stayed at 35oC. Then next minute shivering and oh so cold with a possibly higher temp, i didn't take my temp then as I just kept zoning in and out, and with pain couldn't move.

I just feel so crap, as I've been down this road, and don't really care too go down it again. It's too scarey:(
Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/6/2008 10:40 AM (GMT -7)   

Dear Gems,

I cannot begin to understand the terror and the fear you go through with this disease.  I do know you are brave, caring and you are fighting with all your might to try to live as normally as you can.

I wish you were closer to your hospital and that 2 hour bus rides were not necessary as you may feel you are resting but I suspect your mind is not resting...........it is racing.

I know with each episode that is happening your hopes diminish but do not let that happen Gems..............don't you dare to let go of your dreams. 

Yes the funeral wardrobe sucked but it also allowed me to honor the person I had lost and to be there for them whenever I could.

My sister died in November and Only myself and my other sister were with her. Although we loved her and knew we would be sad forever at seeing her die, we knew we had to hold her hand while she went to be with her husband and her only child who had died before her.  So we honored her and we talk about her and we know the world was lucky to have had her as she was a good person and loved so many people.

Remember to try to stay in the moment.  You can do this.  Do not give up.  Get mad, feel sad and allow your emotions to come out but never give up Gems, we all need you.

Hugs

Kitt


 

Kitt, Moderator: Anxiety, Panic & Depression 
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/11/2008 2:34 PM (GMT -7)   
I'm trying so hard Kitt, I just want too be able to be the one who can put all thoughts into a box. I try I start too get better, then something else happens.

Another of my friends with CF passed away yesterday, just found out now. This hurts so much. She was only 26!

I can't see my way out of this cloud of depression, things just keep making it thicker and thicker.

Thankyou for your kind words though hun, they are helping keep me afloat a lttle longer. It's just so hard.

I'm gonna go sleep now, if I sleep then at least my mind gets a bit of a rest. It is just constantly running, and I'm trying too just stay out of the house, and out in town or elsewhere. I hate been on my own all day at timeslike these:(
Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40565
   Posted 6/11/2008 4:52 PM (GMT -7)   
Sending cyber hugs Gems,

((((((((((HUGS))))))))))

You are in my thoughts and prayers.

Luv and hugs, Karen
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/13/2008 10:16 AM (GMT -7)   
Well, now my muscle enzymes have shot through the roof again. I've been in pain for days, and was expecting too get to the hospital, and them tell me the pain was all in my head. But, actually they'd noticed my levels shooting up, but didn't want too tell me, until I went too them with problems. Still no clue what's going on, but the 50 millionth time, they suggested taking away my mirtazapine (remeron). Even though there is loads and loads of proof to say it's not that which causes the problem. Anyway, they have no chance of just suddenly stopping that without first consulting my psych and secondly, me actually being happy to do that. I'm on 45mg a day, so it's not a small dose too suddenly be cutting. So they're thinking up another plan.

I'm scared, I'm now right back too where I was last year, on crutches, worn out and just fed up of everything. My excercise tolerance has just gone completely. All that I'd built up has already been eaten away. I'm wondering what the whole point of this last few months of battle too get stronger has being. It's like all year I've been building loads of pretty sandcastles, and now the tide has just come and taken them all away.

My liver is also going haywire, but, thankfully my kidneys are still being as tough as old boots. I am so lucky my kidneys are the only things that work. Maybe getting blasted with antibiotics every 3 months isn't a bad thing, I think it must strengthen them and prepare them.
 
I've also managed too lose 3kg. I don't know how or why. I've not been eating well, but still piling in calories. I'm suddenly thankful I ignored all there advice about loosing weight. Loosing the 3kg still puts me slightly higher on the BMI scale, which is fine by me, and it means it's not too big a deal if I loose a couple more kg's. I think my main problem is, I've lost the 3kg in 2 weeks. It's only like 6.6lbs. But I still shouldn't have lost it:(

The next plan is, next week sometime, I'll go upto the cf unit, have my bloods taken, do excercise, have my bloods taken, do more excercise, have more bloods taken.

I'm so annoyed at my body. These enzyme levels shouldn't go over 200, 200 is tops. Mine are a 6,925.

All I get from Paul, is him having a go at me, as I've not done the housework, but being well enough too go too one of my courses. I'm trying too point out, I'm not well enough, it's just I have too keep up with my work, or risk being thrown off the courses, which wouldn't be benficial too me longterm. I have too keep going. Housework isn't important, when all it's going too do is knacker me out, there are no benefits other than it'll make him happier. My health goes before anything thoughYou'd think after 5 years he'd have learnt.

Sorry for all the complaining, I just really need support and too know, it's not just me going insane.


Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

Post Edited (Darkies Gem) : 6/13/2008 11:22:51 AM (GMT-6)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/13/2008 3:37 PM (GMT -7)   

Gems,

Bushels of turnips coming your way...........oh wait no, that can't be right.  Now I remember it is bushels of hugs for you my sweet British Princess.

I am so sorry that you have lost another friend to this disease.  I empathize with you and I wish I was there as I would walk with you and you could explain just what high tea really is? :-)

I don't understand all the numbers but your enzymes are like crazy zymes on meth.  Holy Moley Batman, they are high in the sky.  How do they bring them down without messing with your AD med and what happens to you without the Remeron?  I am so glad you are a good advocate for yourself.

I am sorry your hubby is not understanding as I am going through a mini-version of the same.  I have to do what keeps me going and keeps me in the moment or I will break.  For you that is your studies and getting out of your apartment, not being alone.  That makes sense to me.  I am sure it makes sense to all who have depression and deal with it daily.  We do what we have to if we want to stay in the game.

I wish there was more I  offer you but you always have my shoulder, it is really broad. Please know I care and I am here for you.

A toast to your kidneys...............love you hun.

Hugs
Kitt


 

Kitt, Moderator: Anxiety, Panic & Depression 
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/14/2008 2:56 AM (GMT -7)   
Well, went baby sitting last night. That nephew of mine is just adorable. Only 11 months old, and I think he's already recognising me as the aunty with all the sweets. Can't leave the room without him either folowing me or crying. Makes me feel all loved. My only problem is, with my arms and legs being all weak again, I can't pick him up for long, like I could 3 weeks ago. He's a really cuddly baby and it usually makes me feel so happy just too sit and have a cuddle with him.

Had yet another arguament with Paul, over the same thing. Also he's now moaning because he has too do a full 8 hour shift today. Normally he only does 6 hours, as that way, he's home ready too make my tea, so I don't burn the house down. I just can't believe how he's moaning about being so hard done by. I used too do 15 hour shifts at McD's and complained less. He hasn't exactly got a demanding job. He sits down all day on the phones.

I know what my remeron is doing, it generally improves my mood, and stops me completely sinking and just ignoring the world.
When I was taken off it for 6 months in the past, I really sunk, and couldn't face leaving the house. I had a few very good attempts at kiling myself. I took up smoking for a month, as a form of self-harm (year's of being told 1 cig could really harm me). I turned into a stick. Before remeron, I can kind of remember what I was like. I remember my doc really panicking, when I let on how I was feeling. I spent 99% of the time just crying and couldn't look anyone in the eyes. I constantly wore a baseball cap or hooded top too keep people seeing into me. I felt like I was in a very dark forest and there were just eyes constantly on me. I couldn't stand colours, or bright lights. They were the opposite of what I was feeling.

On the remeron, I can wear colous other than black, I can actually see there is a lot of beauty in the world. I can think of killing myself, but then I know there is something that stops me. I think it makes my mind work a little faster, so I can stop myself, before I do anything. It improves my appetite and makes me crave chocolate and cheese.

Before it, noone could make me start college, noone could make me join any social groups. I wouldn't be having my weekly physio sessions, I wouldn't have accepted any help from anyone. The only time I would leave the house, was to go too hospital appointments.

I guess I should actually be thankful I'm not how I used too be. But, I know full well, it's my remeron that changed everything, whenever I've come off it in the past, even when remeron was replaced with sertraline, I just wasn't as strong then as I am now. I don't ever want to have too visit the place Iused to be.

It obviously doesn't make me super happy constantly, I don't think anything does. I still start too slip down the cracks, and it scares me still when things go wrong. Even though I think I can trust myself now, I still get scared that one more slip, and I'm not going too know what I'm doing. I still get so afraid of loosing myself, like I used too before remeron.
I still have massive 'blips' in my depression, where sometimes I'm really really low.But it still keeps me standing.

Noone is sure how too go about bringing my enzyme levels down, they just go down as and when they feel like it. When they took me off my remeron last time, my levels didn't change, they stayed high for months and months, then suddenly dropped for no reason. Also I've been on remeron at the same dose since like June/july last year I think, and they started too go right down too 180, which was amazing. That was in January when on my last lot of IV antibiotics. Then all of a sudden they've shot up again while, on the same medication, in the same doses. These enzymes basically attack my muscles. All the waste fom this has too pass through my kidneys, and in normal people, this would block there kidneys up. For some reason though, my kidneys are just leting things pass them by, without making a fuss. It's the first and probably only time, I like myself for being totally odd and not normal:P

Kitt, your post made me laugh, and thankyou so much for that. I use humour a lot too help me see my situation as lighter than it is. Smiles are what make the world go round. And, they also make it easier too pretend everything is ok. Things have been so difficult just recently, and I'm up and down and round and round and I don't know where I should be. You're making things soo much easier for me. Both you and Karen.

(((((((((((((((((Kitt and Karen))))))))))))))))))))))))))))))))

You've been so good too me and patient with me, thankyou
Gem x
 
PS: High tea, I've never heard of it, lol. Unless it's just like tea time. Instead of breakfast, lunch dinner. Around here we usually call it breakfast dinner and tea. After a quick Wiki search, high tea is just another meal time.
Now, you know you really want too know the joys of a hot cup of tea with milk.......Mmmmmmmmmmm...........And, real fish and chips from the seaside. Us Yorkshire folk hold the true knowledge of the UK tongue
Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

Post Edited (Darkies Gem) : 6/14/2008 4:11:35 AM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 11:12 AM (GMT -7)
There are a total of 2,731,692 posts in 300,951 threads.
View Active Threads


Who's Online
This forum has 151123 registered members. Please welcome our newest member, Joyce Apuzzo.
360 Guest(s), 9 Registered Member(s) are currently online.  Details
mtm3461, Scaredy Cat, ArtAngel, Girlie, panicgirly, Duffykani, Nosila, straydog, Graytech


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer