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Posted 4/15/2010 6:39 PM (GMT 0)
I've been upto the hospital today......It's not been so good, and may explain my constant tiredness and tears and general bleurgh feeling.

Firstly, levels are everywhere. Iron, Vitamin D, Calcium levels all far too low. Blood sugars too high. Lung function above 80%, but the effort it took on just the first blow was phenomial-I went dizzy and still have headache from it now. My nurse again wasn't sure I should carry on. My chest now has to be watched as they noted something wrong-though not quite sure what.

So new plan. Had a super dose (5 tablets) of Colecalciferol 20000 units. Sticking with my 6 tablets a day of Vitamin A+D BPC. Adding in 2 Adcal-D3 tablets. Trying to eat less sugar without losing weight, eating lots of spinach and medium rare steak (as rare as I can go). Also next appointment on the 10th May, adding in DNase nebuliser-probably through my Ineb, also a Blood sugar monitor thing to use at home.

There's been a LOT of changes today, to meds and diet. But, maybe my bodies been under strain because of all the stuff I'm lacking, and maybe there is actually a reson for my current moodiness and worn outness. Hopefully, if we manage to get my body back into some sensible working order, then my Erythema Nodosum type spots, should keep away too.

The doctor wasn't so sure about my mood and going to the gynae. So the new plan is to try to fix everything again, and then maybe I'll be all happy and butterflies again, which will stand much better in my favour.

Guess I've just gotta keep plowing on, might be a bit easier now though.......Hopefully!

Posted 4/15/2010 10:23 PM (GMT 0)
(((Gem)))

I hope you start to feel better soon.
Posted 4/15/2010 11:35 PM (GMT 0)
Hey Girl!!! Sorry you are feeling so bad! Hope you feel better!!!
Posted 4/15/2010 11:38 PM (GMT 0)
Thanks Ivy, big hugs back.
I'll be ok, just in a bit of shock really. I've been feeling SO rough-but so soon after IV's I've tried pretty hard to ignore it, because IV's are meant to fix everything, at least for a month or so anyway!! It's clicking into place, but not really bringing any relief, because now I have all the extra meds to remember to take, and the thought of more nebulisers and daily finger pricks.

I do like the Adcal-D3 meds though, they remind me of dextrose tablets, which I can easily munch through a packet of if the mood takes me. Lol, and they were actually panicking that I might not like them and warning me they were pretty nasty.

I'm going to bed now anyway, going to see my sister tomorrow. :)

Hope you're ok Ivy! xxxx
Posted 4/15/2010 11:41 PM (GMT 0)
Oh and Amy too :) Thanks hun, hope you're good too.

I just needed an outlet more than anything, I'm sure I'll be fine by morning. It's just been another loooooooonnnnnnngggg day. xx
Posted 4/16/2010 12:34 AM (GMT 0)
Prayers and hugz to you, will be hopeing you are better soon...maybe it was too soon for all that bloodwork...
Keep us posted and I will hope everything turns out good...
(((((((((((((((((((((((((((((((darkiesgem))))))))))))))))))))))))))))))))))))))))))))
hugz
Posted 4/16/2010 4:15 AM (GMT 0)
Hey Gemma,

I hope you are feeling better real soon.  Have fun with your sister!  I know how crazy you are about her!  She has always been your sweet baby!!!  Let's chat soon!!!  Love you lots.

 

Posted 4/16/2010 5:34 PM (GMT 0)
Gems,

I have a whole bag of Faery Dust to send your way to help you feel better and also one stale magic carpet if you want to explore the moon and the stars.

You know you can vent here anytime and lord knows you supported me so many times.  Lots of hugs to you my dear young friend.  You are special.

Love and hugs,

Kitt

Posted 4/16/2010 11:03 PM (GMT 0)
Thanks guys *hugs*.

Now trying to get over Volcano worry. We are thousands of miles away from Iceland, yet we're on a shutdown in the UK. No aeroplanes can fly in or out of the country. A few miles away, where my hospital is, it has been reported that ash has been found on cars and things today, meaning the ash is falling. I've got my Ventolin with me, but it's still a tad worrying.

I hate Volcano's, they are my greatest fear ever. I have nightmares about them every other night, the thought of them terrifies me. Just something else to jolt me back into worried mode. I hope it clears and stuff soon, I guess I should be very thankfull I don't live in Iceland!

Char, I am with you on too much bloodwork, way too much! I'm not actually allowed to give blood, because of the amount they take from me for bloodtests and the like. I've told them they need to stop taking so many bloodtests then.....They only take it because they are vampires really and they like a bit of balck pudding for breakfast.

Thankyou for the well wishes, and Kitt-the fairy dust has reached over here and it is beautiful. I'm going to try to imagine that it is the fairy dust that gave us a beutiful sunset tonight, rather than the nasty Volcanic ash. Maybe if it's fairy dust we are breathing in, it might mend my lungs a bit. :)
Posted 4/16/2010 11:35 PM (GMT 0)
Hey Gems,

I flew over Iceland when I flew to London so I know where the volcano problems are.  We are home to one of the largest air carries in the USA that flies to many of those cities including London, Paris and Amsterdam.............. Delta Airlines, so we have people here that are stranded and cannot get home as well as people that want to come over there.  I am not responsible for the ashes,  I really did send faery dust for you.  smhair

You sound better today but do stay out of the ashes as that would not be good for your breathing.

Hugs to you sweetie,

Kitt

Posted 4/16/2010 11:41 PM (GMT 0)
Gems,

My sweet princess of the northern skies.................I am not responsible for the nasty ashes as I truly sent a wonderful bag of fairy dust.  The one with bright pinks, blues and greens that sparkle as they fall upon your shoulders and in your hair.  turn

We are home to Delta Airlines who is a major carrier to London, Paris and Amsterdam so we have many people stranded here that want to get home as well as people that want to visit your part of the world.

Picture the sunset in brillant colors and let your mind rest.  You deserve a break and some down time to just be in the moment.

Love and hugs,

Kitt

Posted 5/1/2010 8:36 PM (GMT 0)
I start DNase (Pulmozyme) on the 10th May. Nervous as hell as I'm not the best when it comes to nebulisers.
Just thought I'd quiz you all, about what I might be expecting.

Is it likely to cause sore throats or anything? How likely are reactions to it? Do you find it helps declog your lungs?

I've been particularly clogged up recently, though have never been very productive. I can feel it all gooey sat on my chest and too much physio just hurts and tires me out far too much. I'm still so bitter about the IV's not working.

I've just had a truely excellant holiday, did way too much and am paying for it. My chest wasn't too happy the whole time, and I was ordered to stop and rest several times, as I'd done my excercise trick of not breathing so I can concentrate on something else, then realising my lungs have an issue with that. Stupid things. Laughing to hard, sneezing, getting stressed-are all triggers right now.

Managed to avoid the cold that 3 members of our group came down with though, which was impressive considering we were all sharing a caravan and one of those three was my husband. Sometimes having an active infection does have advantages. I rarely get viruses mid infection-think the pseudo just kicks everything else out of the water.

Still not quite sure how I'm gonna do college this week either. I have to carry on, or I'm going to fail, and I can't fail as I just can't allow that.

Maybe this DNAse will do something? Or something might work.

Oh, anyone else on Adcal-D3 have you found it can mess with your Creon need? I seem to be completely off kilter with my belly and slightly altering my Creon with some foods is helping a bit. I just still haven't balanced it properly yet.

Pauls put a ban on my sugar intake, I'm only allowed 2 sugars in my coffee. I'm gonna cry if they find anything in all this blood sugar testing and try to change my diet. I don't want to lose weight. :(

I just still feel all over the place really.
Posted 5/3/2010 6:42 PM (GMT 0)
Oh oh, new toy!!!!
My mother-in-law has this machine thing. You basically stand on this contraption and press the go button. You stay on it for 10 minutes, and it jiggles your whole body like a bowlful of jelly. 10 minutes is meant to be like an hours workout or something.

Anyway, I'm thinking it vibrates your chest too (I was pretty out of breathe 2 minutes in, but carried on anyway). And it only hurt my muscles a little bit, so it has only gently worked them, so hopefully not going to be in pain for days, and it might actually have wound my muscles out a bit as they've been really achey since the holiday.

Just thought I'd share this, as it's a little bit of yay for a change. Thinking if I go round to my mother-in-laws once a week and use this, it might help a bit. Oh and a side advantage, it got my pelvic floor muscles too, hopefully it might strengthen my bladder a bit. :D
Posted 5/8/2010 9:35 PM (GMT 0)

Gemsi said...
Thanks guys *hugs*.

Now trying to get over Volcano worry. We are thousands of miles away from Iceland, yet we're on a shutdown in the UK. No airplanes can fly in or out of the country. A few miles away, where my hospital is, it has been reported that ash has been found on cars and things today, meaning the ash is falling. I've got my Ventolin with me, but it's still a tad worrying.

I hate Volcano's, they are my greatest fear ever. I have nightmares about them every other night, the thought of them terrifies me. Just something else to jolt me back into worried mode. I hope it clears and stuff soon, I guess I should be very thankful I don't live in Iceland!

Char, I am with you on too much blood work, way too much! I'm not actually allowed to give blood, because of the amount they take from me for blood tests and the like. I've told them they need to stop taking so many blood tests then.....They only take it because they are vampires really and they like a bit of black pudding for breakfast.

Thank you for the well wishes, and Kitt-the fairy dust has reached over here and it is beautiful. I'm going to try to imagine that it is the fairy dust that gave us a beautiful sunset tonight, rather than the nasty Volcanic ash. Maybe if it's fairy dust we are breathing in, it might mend my lungs a bit. :)

Hi Gemsi,

I hope you are ok.
Just wanted to tell you that I live in Iceland we are all fine here. I know some lung patients are having a hard time here, but they just use the masks and take some antibiotics

The Volcano is not disturbing our everyday life except for flights and the people who live very close.
I live 62 miles from it and it has not had a big affect on us.

I know Volcanoes are scary ((Hugs))
Posted 5/10/2010 10:05 AM (GMT 0)
Hey there Isergodur,

Thankyou for your post! The warnings and first panic seem to have worn off here, everyones more worried about the general election now lol. Our media do like to scaremonger quite a lot!! We've had guidelines from the CF Trust now, saying we only have to worry if you're asthmatic. I'm mild asthmatic, but always have my Ventolin on me anyway. My chests been awkward but I'm thinking that is infection related and in no way related to any volcanic ash which may be lurking. I know the ash has blown back our way again and Ireland and Scotland have had to close their airports again. Hopefully flights will be back in full action by August, or its gonna be a pain to get to Spain!

Volcanoes are sooooo scarey, it was the very first true phobia I had (well, second if you include needles), all of the other phobias have followed on from it.

*hugs back* thank you!!
Posted 5/11/2010 4:23 PM (GMT 0)
Ok, so thankfully stabby machine is only for a week. Good job as even though it's one of the pen type contraptions with a quick retracting needle trigger and the needle is fully hidden, I've somehow still managed to scratch across my finger and create a lot more blood than necessary on my first go.

DNase seems ok, it reduced my lung function by 5% on first go, but plowing ahead anyway. It had upset my chest and made me a bit wheezy, but it was more because I instantly started producing stuff. Yesterdays neb took 12 puffs to get it through, todays took 6. If tomorrows is 3, I will be obviously very very happy. Though 6, heck even 12 is still good to me. :D

So, the appointment wasn't as bad as I feared and I managed to reach a happy compromise with my dietician-one where I can still have my sugar as I'm loosing weight with not having any, which can be damaging to my health if I keep on this downward spiral of weight. While for the minute I'm ok, as I made sure I've kept myself at 27-28 on the BMI scale. I still want to avoid getting into a pattern of loosing weight, as then it can be very hard to turn things back around. Well, hopefully not being as strict with my sugar and actually eating it, but only at mealtimes, I should be able to nip that in the bud now.

Generally I still dont feel happy about how topsy turvy my health is, I really hate been off balance. Infact it's almost bordering on a fear.
I am still everywhere really, I just dont quite know whats for the best right now. I definately dont like the stabby machine though, so must not let myself get to diabetic status.
Posted 5/11/2010 9:55 PM (GMT 0)

Gemsi said...
Hey there Isergodur,

Thankyou for your post! The warnings and first panic seem to have worn off here, everyones more worried about the general election now lol. Our media do like to scaremonger quite a lot!! We've had guidelines from the CF Trust now, saying we only have to worry if you're asthmatic. I'm mild asthmatic, but always have my Ventolin on me anyway. My chests been awkward but I'm thinking that is infection related and in no way related to any volcanic ash which may be lurking. I know the ash has blown back our way again and Ireland and Scotland have had to close their airports again. Hopefully flights will be back in full action by August, or its gonna be a pain to get to Spain!

Volcanoes are sooooo scarey, it was the very first true phobia I had (well, second if you include needles), all of the other phobias have followed on from it.

*hugs back* thank you!!

Good you are feeling better :) The media can make a save situation seem worse...
I hope the volcano will not cause you harm in any way.


Hope you make it to Spain in august ..

Best wishes Isergodur
Posted 5/18/2010 4:43 PM (GMT 0)
Well,

All went well with my gynae. He asked the best question "are you particularly attached to any of your medication" erm.......Nope definately not, whatever I can get away without having for 9 months, I will. So, he filled in the forms for IVF. Now just waiting to see if they can do it for free on the NHS and if I have got the application in on time as the government is planning to cut funding. It was a very positive appointment though!

Going to work extra hard now with my DNase and physio and multivits and try and get myself in tip top condition. I have much more of a motive now, and that should help me work extra hard to get myself back on track.
Worrying a bit about the diabetes thing, actually really worrying about it, but hopefully it shouldn't make a difference.

This might actually happen though, it might stop being just a dream and actual reality soon, I'll be a proud CF mummy. :D
Posted 5/21/2010 11:40 PM (GMT 0)
Gemsi

I am glad to hear from you and that you are doing well. Stay motivated and know that I am always here cheering you on.

Do keep us posted on the "mommy"  status.  It gives me goose bumps and I am excited for you.  The magic fairy dust is right over you now so relax and enjoy !

Love and Hugs,

Kitt

Posted 5/24/2010 6:49 PM (GMT 0)
Eek,

First time in sun, after 3 years of having to avoid due to Ciprofloxacin. I'm BURNT!! I only went out for half an hour 3 days ago, mostly to try and help my Vitamin D levels a  bit more as I'm getting sick of the extra meds to try and get them to a reasonable level.

I didn't think English sun at this time of the year would do so much damage, I've lost the sun resistance I used to have before Cipro grrrrr...

Well, I guess at least I know I need some factor 40 sunscreen or something when I go to Spain in August. Think most painful spot, it my port scar, it's roasted. But my arm is a good contender. Had a cool shower this morning to try and ease it, but nope, still as sore as ever.

Anyway, I've decided I hate Cipro, it never ever helps in any way, and causes this. You'd think after a year off it though, I'd be ok.

Bit of a downer today, I've slept most of the day, except going upto hospital for a blood test relating to baby thing. I just have too much today, and the heat is exhausting!!

 

Posted 5/27/2010 7:20 PM (GMT 0)
Hey Gems,

Sorry to read of the sunburn.  I cannot be out indirect sun for very long second degree to the skin cancers that I have had so no more cruises or walking in the sun on a  beach unless I have # 90 sunblock,  a big hat and long pants and long sleeves on.

Argh.  It has been above normal temps here.   Hot and very humid confused !

Hope you are feeling fine as frogs hair today.

Hugs,

Kitt

Posted 6/15/2010 7:13 AM (GMT 0)
I decided yesterday, I want to be someone else for a bit. I want to be able to paint my face everyday and be someone completely different.

This CF thing is tough, and even tougher is somehow dealing with CF and trying to carry on as normal. I have 2 weeks until college is done with, and I really just want to throw in the towel. Noone will let me do that, which is good because it means I might get somewhere, but honestly sometimes I wish they would just leave me alone and let me give in.

Depression and CF can be a funny thing, because you never know what is causing what. This time, I'm going with a lot of CF being the problem. I'm tired, I need IV's, but I can't have them yet as that would definately be the end of my college course, as if I'm finding it hard now, having the last 2 weeks also juggling IV's would be an even bigger nightmare.

I've worked so hard this year, and now I'm going to find it's all for nothing as I can't retain anymore information. My brain is very close to full capacity, and I have a lot more I have to know for my exams. I have 4 exams left and I have no clue how I'm going to do them-well unless I can train a chimp to know the answers and to cough and sneeze in the exam when I have it wrong.

I have a practical exam today, which should be easy if I don't have a mental block and forget how to put a computer together or to install Windows XP.

I think the biggest pressure is, if I don't pass this course, I can't do my teaching course in September. I wont have enough qualifications and I can kiss the course goodbye. I know that's not going to be a bad course. It's one day a week with only assignments, no exams, no information to retain and overload with.

I guess I should just concentrate on passing this course first. I just feel so crap and useless right now, and I'm sure without CF in the way this would have been an easy course for me. My tutor keeps telling me the same, but that doesn't so much help me in the here and now.

Very self-indulgent post, I know. I'm just on the verge of a third tear-filled day and I don't know how I'm supposed to cope.

Some Diazepam would be nice about now. :(

 

Posted 8/1/2010 1:47 PM (GMT 0)
Hiya,

I've been quiet for a bit, and I figured while I'm sat doing nothing, I would explain why.

First bit of news-I passed my course at college, somehow magically passed it. I'm not a Microsoft Professional, though I'm still getting my head round things. I'm getting very annoyed that I don't actually know everything, I still need experience, and my brain is very very rapidly forgetting everything I have learnt over the past year. But, I have enough qualifications to do teaching course in Sept now, so I'm doing good still.

Erm second bit, I'm going for IVF. Have to start with injections 2 days after my next period starts. This is exciting and scarey and I can't believe this is actually happening and I might be a mummy by this time next year!!! It's all looking positive and good and everyone is happy for this going ahead. Infact my CF consultant is positively bouncing when he sees me lol.

Third bit, I'm coming upto the end of a 2 week stay in hospital on the best ward in the world! I've had such a relaxing time, our new CF ward is like a hotel. Everyone is smiley and happy to be working here and there is a really positive feel to the whole thing. I had to come in as I had lost 10kg, I've put 4kg back on already since being in here. I go home on Wednesday.

Forth thing, isn't so great, it's my depression. Not sure if I'm just maybe a bit overwhelmed with everything, while there is SO much positive stuff going on, it's still all playing with my mind and I feel I've been slipping badley for a couple of months now. I am trying very hard to keep afloat, and will continue to strive to do this. I'm just a huge bag of rubbish thoughts right now. I know I can beat this though, I'm sure I can.

So between everything, that's why I've been so quiet, just so much happening and wanting to hide and also be me for a bit, as it feels like everyones giving me orders right now. Don't think I've missed anything out.

Hope everyone is well xx

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