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Colleenc
02-03-2011, 06:40 AM
Hi Everyone!

I have been diagnosed with SLE and APS for a few years now. I have had several life threating events occur. Heres a quick run down. 2 Pulmonary emboli, 2 DVT's, Ischemic Bowel (due to clot and vasculitis), Septic shock due to Bacteria that had overloaded my blood (have no idea where they came from) and now the current one I'm dealing with and have been for the past 4 weeks Vasculitis in my stomach (well were still sorting it out) and acute adrenal failure (they stopped working due to the prednisone). I have not eatin anything solid and kept it down since Jan 4. So as I sit here I'm on IV solucortef, pantoloc and IV fluids with potassium and my daily injection of a blood thinner called Tinzaparin ( I'm currently not taking my plaquinel, Imuran and Tylenol 3 due to not being able to keep them down). Going to docs today to have a check in. It would be nice to read about and talk with other people who truly understand (or maybe have no clue) but are expiriencing the same issues.

I'm a mom of 3, wife, I work outside the home as a unit secretary at a hospital (but I'm on sick leave now).
Colleenc

tgal
02-03-2011, 07:06 AM
Good Morning Colleen,

We are so glad that you found us and that you decided to join! WHL is a fabulous place full of wonderful people who actually understand are sickness even when we don't always look sick. Please make yourself at home and look through the old threads or start new ones if you wish. Others will come along and say hello and hopefully you will come to understand that you are now a part of our family.

I am so sorry for all that you are going through and please keep us posted on the outcome!

Peridot_Gem
02-03-2011, 08:47 AM
Hello Colleen,
It's lovely to have you with our lovely large family of the WHL and we all understand what your going through one way or another, as symptoms hit each individual in different ways.

You have been through alot, i had the DVT like yourself and they've just done a blood test showing there's no clots at the moment for wulfrin but they've soon got me on 75mg of asprin to help. Like yourself i've had loads of things related to this and was born with it but it's only been the last 2yrs blood tests etc have been done to find out what i do have.
I don't know if you have this but i've got swelling around my lungs which is painful and when i saw the Rheumo last week he asked me if i had pain by my heart and i confimed yes and he never mentioned nothing after that now that does annoy me, mind you i should'nt have been so slow and asked why he'd asked.

Colleen there's so many threads for you to venture through and learn more about the condition and in due course member's will answer if they've had the same as yourself or know about it.

Hugs Terri xxx

~LUVMYFLOWERS~
02-03-2011, 02:53 PM
Hi Colleen, And so glad you've joined WHL, And welcome to the forum!!!
There are lot's of wonderful and supportive people here also lot's of information that may help.
I myself have cns vasculitis and the vasculitis attack's my stomach at times causeing lot's of pain and other issues. So glad you've joined! I hope you get a good report at the dr's today!
Gentle Hug's !!!!!!!!!!!!!! Diane,

Colleenc
02-03-2011, 09:51 PM
Hi Terri,

I don't have swelling around my lungs, however I have pain when taking a deep breath. I have had CT scans and they show nodules (either imflammation or scarring from my clots). I have a very good respirologist who keeps a close eye on things. If there is one thing I have learned it's to ask many questions and be your own "project coordinator"!!

Colleenc
02-03-2011, 09:53 PM
Hi Diane

Still trying to figure out what's causing the stomach problem. Doc said I need to continue on the IV stuff and is pushing for me to be admitted to hospital, however I'm trying to avoid that....

Colleen

magistramarla
02-03-2011, 09:58 PM
Hi Colleen,
Welcome to WHL. You've come to the right place to find others who understand what you're going through.
I hope that you feel better soon (and keep some food down).
Keep coming back here to update us, or to vent when you need to.
Hugs,
Marla

Peridot_Gem
02-04-2011, 06:00 AM
Hi Terri,

I don't have swelling around my lungs, however I have pain when taking a deep breath. I have had CT scans and they show nodules (either imflammation or scarring from my clots). I have a very good respirologist who keeps a close eye on things. If there is one thing I have learned it's to ask many questions and be your own "project coordinator"!!Hello Colleen,
Thanks for getting back to me, when the swelling appeared on my right lung i soon went and saw my GP and he said at the moment the lupus is running riot and causing the muscles around your lungs to swell but the pain from it is terrible and then when i saw the Rheumo specialist and he asked if i was getting pain around my heart and got no answer it got me wondering what's going on here then, i have all those symtoms with pain with breathing and bending they've got me on 3 different types of inhalers to help me.
I am surposed they've not got you on wulfrin to move the clots quicker and the injections, mind you it does make you put on weight quick and your right what you say you need to keep asking questions but it does'nt help when your speaking to Doctor's just with broken english.

I hope your abit better today Hugs Terri xxx

Colleenc
02-05-2011, 10:53 AM
Still feeling crappy!!! I'm going to try oral steroids tomorrow and see how that goes, I beginning to think this will never be over!!! UUUUGGHH!! Going to spend sometime with my family and friends today!! Just to take my mind off being "sick"!!

kim,l
02-05-2011, 07:01 PM
Dear colleen c welcome whl i am sorry you are still feeling crappy hope things get a bit better soon hugs kim l

Peridot_Gem
02-07-2011, 10:50 AM
Still feeling crappy!!! I'm going to try oral steroids tomorrow and see how that goes, I beginning to think this will never be over!!! UUUUGGHH!! Going to spend sometime with my family and friends today!! Just to take my mind off being "sick"!!Hi Colleen,
If you try the oral steroids i hope they help you plus i really hope your feeling abit better today and enjoying your family's company might take the edge off for a while with what your feeling mate.

Do Takecare Terri xxx

Colleenc
02-07-2011, 12:16 PM
Well still have not got to the oral steriods. Had a syncope(fainting) episode last night hit my chin now I sporting 4 stitches and a fat lip. Waiting to here from my rhuemy. Hospital said I had a drop in my blood pressure that is what caused the fainting, but I should see cardiologist for follow-up. Seems to never end....

tgal
02-07-2011, 01:32 PM
I am so sorry you are having a bad couple of days! Please keep us posted on how it goes

Peridot_Gem
02-07-2011, 02:03 PM
Well still have not got to the oral steriods. Had a syncope(fainting) episode last night hit my chin now I sporting 4 stitches and a fat lip. Waiting to here from my rhuemy. Hospital said I had a drop in my blood pressure that is what caused the fainting, but I should see cardiologist for follow-up. Seems to never end....Omg colleen i do hope your ok mate and especially your mouth not giving you to much pain.
I've been passing out for years besides having my seizure's but they could never put there hand on the passing out, till the hospital a few years back kept telling me i had low blood pressure and sugar and it's only through being under the rheumo now that it's being kept an eye on.

I do hope your appointment with the cardiologist is'nt to bad and thanks for letting we know how you got on, although in bad circumstances, get well soon mate. xxxxxx

Colleenc
02-10-2011, 12:03 PM
My stomach is finally feeling a little better (on oral steriods now but still need IV Pantoloc for my stomach), but we still have no idea why I passing out! and to top it all of my primary care Nurse Practitioner "fired" me because I'm to sick. It's been a fvery crappy week. Also I need a plastic surgeon to take a look at these stitches on my face... Boy it's gonna be a nasty scar... UGGHHHH

Peridot_Gem
02-10-2011, 12:42 PM
Hi Colleen,
It's nice to hear you feel abit better with your stomach due to the oral steriods, have they checked you for low blood pressure as that can cause passing out and fire away at your nurse practioner, when i went today and saw Tracey our nurse practioner she asked how i was and i gave her an update, it's like it's never ending but she's a good listener. I did laugh to myself when she came to me with the B12 Jab and asked me if i was ok with needles ( i said what do you think after 25 bl..dy years) and we both laughed.
I know the scar will bother you for abit but as time goes on they do get fainter especially if they've had stitiches, alot of my scars have'nt and never healed close.
Mind you as we all get older everyone needs a plastic surgeon mate.lol

Colleenc
02-11-2011, 08:12 AM
I have a few other scars on my face on from an accident and the other in my eyebrow from the last passing out episode 2 weeks ago. But this one is dead center on my chin below my lip and the stupid ass doc in the ER did a bad stitch job. So that is why I'm going to go see a plastics doc. The on I have on my cheek from the accident was stitched really well and is only noticable when I tanned. I t took 14 stitches to close it but it has lightened with time. The one now makes me look like the bride of frankenstien!! LOL As for my passing out. I will have to wait until I see my rheumy thursday. To start that process. My general care pratitioner "fired me 2 days ago for being "too" sick... So I have no one coordinating my care anylonger!!

C

Peridot_Gem
02-11-2011, 09:59 AM
Hi Colleen,
I am sorry about you not having a care practioner but i do hope you can get another soon and my god mate you do have some scars.

Well i've cut my head open no end of times through either the fits or by passing out and when my hair came out at the one side bad i skinned my head on grade 1 and my head is like the map of the world.lol My thumb was cut open when i was taking wulfrin and the amount of blood, they rushed me into surgery and that was stitched bad but i am terrible for getting the stitches out myself i cut them on top and pull them out, the doctor's know i do it.
Colleen you could get a plastic surgeon to make you feel better but it's a waste of money mate, if you carry on cutting yourself open, as you'll constantley be under the knife then.

I hope your days not been to bad and things go ok and thursday with the rheumo and they're able to sort the passing out.

BonusMom
02-11-2011, 07:34 PM
Welcome Colleen to WHL!

It sure sounds like you've been through the ringer with SLE and APS. I, too, am a mother of three (and a bonus mom of two). I am certainly not an expert when it comes to SLE, but can always lend a supportive ear.

Hope you are on the mend soon!

Colleenc
02-12-2011, 03:03 PM
I can always use a supportive ear!! The lupus part has not been to bad for me, it's the APS that has kicked my ass and I do believe is the cause of my currant problems (the passing out thingy). I find it hard to juggle all this and the "mom/wife" thing, but I have a very supportive husband and kids, without them it would not be possible!! (<:

~LUVMYFLOWERS~
02-14-2011, 04:36 AM
Hi Colleen,
Sending Big Hug's to you !!!!!!!!!!!!! And i hope you are feeling better with
your aps. ~ Diane ~

Colleenc
02-14-2011, 07:56 PM
Thank you, having a tough go still, but I'm still smiling!!! (<:

Peridot_Gem
02-15-2011, 07:54 AM
Thank you, having a tough go still, but I'm still smiling!!! (<:Hello Colleen,
Nice to hear you still holding on in mate and fighting it and if your like me those smiles might be tears.

I am wishing you all the best mate and your not suffering to much today.xxxxxxxx

Colleenc
02-16-2011, 12:12 PM
Well so the saga goes........... I had another fainting spell yesterday! Felt it coming on was in the middle of sitting down but not quick enough, caught my arm on a glass vase and well..... 60 staples, 8 stitches and 1hour put to sleep so they could reconstruct and take out all the glass out of my arm later I'm now back at home,with still no idea why this is happaning. Off to docs tomorrow.... I guess will wait!!!

Colleen

Peridot_Gem
02-16-2011, 02:08 PM
Colleen, i just don't know what to say except i am really sorry to hear what happened to you i bet you feel like your living in HELL itself.

I know this sounds stupid but if you have someone with you try and let them do for you and not the otherway around until you see your Doctor tomorrow and i do hope your going by transport.
I'll wait to hear your results but i am wishing you all the best with recovery. xxxxxxx

Colleenc
02-17-2011, 08:33 PM
Hi Terri,

Went to the docs today, she called the cardiologist while I was there. So just waiting to hear when I will get my moniter, they also want to do an angio on me to see if I have a clot in my chest. I see my lung doc tomorrow. The doc today is pissed at the ER for sending me home 3 times without any follow-up. I guess thats the difference between a small town where I live and the larger urban center that my doc is located in, it takes a lot longer here to get the necessary test. Having said that I would think the ER docs should have recognized this as an urgent thing. Boy I hate fighting with these so called professionals.... I guess will wait and see!! Oh and she thinks I still have glass in my newest injury. It is causing me a great deal of discomfort. I will need and x-ray of the wound... It never ends!!!

C

Saysusie
02-17-2011, 11:00 PM
Coleenc;
What an ordeal you have had to deal with and I agree with your doctor about being angry with the ER. I can imagine how frustrated you must be having to continually fight with incompetent doctors. Your fainting and injuries should not be dismissed so lightly!
I sincerely hope that there is NO clot in your chest and I hope that you find some answers and receive appropriate treatment. Please continue to keep us posted as to how you are doing. I wish you the very best.

Peace and Blessings
Namaste
Saysusie

Peridot_Gem
02-18-2011, 12:09 PM
Hi Terri,

Went to the docs today, she called the cardiologist while I was there. So just waiting to hear when I will get my moniter, they also want to do an angio on me to see if I have a clot in my chest. I see my lung doc tomorrow. The doc today is pissed at the ER for sending me home 3 times without any follow-up. I guess thats the difference between a small town where I live and the larger urban center that my doc is located in, it takes a lot longer here to get the necessary test. Having said that I would think the ER docs should have recognized this as an urgent thing. Boy I hate fighting with these so called professionals.... I guess will wait and see!! Oh and she thinks I still have glass in my newest injury. It is causing me a great deal of discomfort. I will need and x-ray of the wound... It never ends!!!

CHello Colleen,
Thanks for getting back to me mate and letting me know how things went.
Well i hope you have'nt got a clot in your lung because as you know you will have to take it steady plus it's a dangerous situation to be in and please let me know how it goes with the lung doctor and your doctor is right they should'nt be letting you go in that state without follow ups or even checking up more there and then.
Colleen that's one thing i've learnt in 25yrs mate is to never give up fighting where specialist or doctor's are concerned because you don't want to end up being walked over, through past situation's with myself i question them now to the extent but with some i will admit a wall comes up.
It's getting worse here in the uk because there's so many cock ups on care etc, hospitals and the NHS are being took to court like mad, so they dow commit themselves so much.
It's funny you on about you may still have glass in your cut, i was treated at A&E about 5yrs back i had a fit and cut my right thumb open plus i was on wulfrin at the time so you can imagine the blood so they operated and to this day the nerve is still alive after they'd said it was damaged and cut out, i can't stand it being touched and they wanted to re-operate and i refused as the scar now is in such a mess the way it was stitched.

Well i am really hoping your lungs am ok and if there is glass still left in, i hope you won't have to much discomfort if they've got to sort it but let me know again how it goes with the lung doctor please.

Thinking of you mate and just rest as much as possible. xxxxxxxx

Colleenc
02-18-2011, 11:28 PM
Seen the doc today.... OMG he was great. He talked with cardiologist who set up a holter (which I have now for 48hrs) to see if we can catch a faint. Got a doppler on my leg to make sure I did't have a clot (and no I don't) Seeing cardio next week and an arrythmia specialist on Friday. My only worry is that I'm not going to have a spell while on the monitor. Then I don't know what they do. But I have been having palpitations. This doc is pissed at the ER for letting me go with such massive injury and no follow up. He also got nursing to come to house for dressing changes on my arm and to keep a close eye on it as it still seems to have glass in it. He did everything a really is worried about me. He has been the greatest. He was the one who help diagnose me with my clotting factors and Lupus. Without him I don't know what I would do. So we will see what the next week brings!!!

Peridot_Gem
02-19-2011, 09:54 AM
Hello Colleen,
Well i have to say it mate the news is FANTASTIC about no clots to the lungs, oh i am happy for you where that one is concerned.
He sounds like a Doctor who does'nt mess about in his field of work and with what you've been going through that's what you need and it only wants one sometimes to get you sorted.
You know if they can't find nothing with your heart to why your passing out, i would mention to him to see if you have low blood pressure or sugar, as for years i had this trouble between my fits and they could'nt get to the bottom of it and years back they found i had low sugar and as time went on the hospitals when i was rushed in kept saying i had low blood pressure and no one took any notice, until it showed under the rheumo specialist and it's kept a full check on now with my doc and the hospital, they can't treat it but it can make you pass out mate, so keep it in mind to mention.
Well if you do pass out again in the meantime i really hope no harm comes to you but hopefully it may give them some idea for when you see the specialist because it's got to be sorted as it's messing you up bad with how you describe what it does but nurses coming in daily is a large help.

Well with how you've typed even though you've gone through hell lately you seem really pleased your being taken notice off and i'm pleased for you also that someone is concerned and i wish you all the best over the weekend and for next week.

Let us know how things go please and takecare loads of love Terri xxxxxx

Saysusie
02-19-2011, 11:40 AM
I am so glad to hear that serious steps are being taken in order to find out exactly what the issues are. I wish you the very best and, please, continue to keep us posted!

Peace and Blessings
Namaste
Saysusie

~LUVMYFLOWERS~
02-19-2011, 05:59 PM
Hi Colleen,
Im so sorry you are going through such bad times with your health,And on top of that
like me haveing to deal with such terrible! SO called doctor's! when your so sick and
going through so much with your health already. Im so glad this new doctor seems to be doing his job and takeing you'r condition seriously as it should be! And has surley got the ball rolling for you. And the nurse to come out to your house to change your dressing, Sound's like a great
and careing doctor and i know one burden off of you with all that is going on.
I wish you all the BEST on your lung's and all your other test & and most of all they find out
what's causeing you to faint.
Gentle Hug's to you!! WISHING YOU THE BEST!! ~ Diane ~

Peridot_Gem
02-21-2011, 05:54 AM
Hello Colleen,
How you feeling now mate and hows that arm of yours?? have they looked furthur to see if glass is still in it.
plus how you been feeling otherwise and have you had to see the specialist again yet and i hope those nurses have been looking after you well.

Thinking of you dearly Terri xxxxxxxxxx

Colleenc
02-21-2011, 09:11 PM
Feeling OK, well a little OK.... I had another fainting spell last night, but I knew it was happaning so I got on the couch before I fell and hurt my self again!! The bad thing is the heart monitor came off that morning so I didn't have it on when it happened. But I was having palpitations and stuff the day before so hopefully it has picked up something. I really need these to stop or at least firgure out what the hell is going on so that I can go back to work!! Also my hubby is supposed to go away ice fishing this weekend (i ruined it last year cause I was in the hospital with sepsis) he really deserves some "guy" time. But he is very nervouse about leaving me. I trying to encourage him to go. I won't be alone the kids will be here (the oldest is 14)... I take the heart monitor back tomorrow (Tues) today was a stat holiday here in Canada. So they will read it tomorrow. On the arm front not good. top wound is healing nicely, however the worst one is not. definantly glass is still in there. Because of long weekend I choose not to go to ER but wait and have it X-rayed tomorrow. It's not healing and the pain is unbelievable!!!! So we will see what they all have to say.... The nurse has been great she is very knowlegable!!!

Take care
C xo

Peridot_Gem
02-22-2011, 12:58 PM
Hi Colleen,
Nice to hear off you. Oh i am pleased you managed to get to your couch before any furthur damage but like you said i just hope the reading give them enough to know what's going on because you can't keep living like that as it's way to dangerous.
Colleen if your eldest child 14 is quick enough to act while their father is away, then things should be ok but othwerwise if not i know you want your hubby to get a break but you must think of what's happening also.
I was they able to mention anything today when you took the monitor back or have you got to wait furthur now?? and what have they done about your arm or am i to early yet in asking with our time differences.lol

I hope everything works out ok for you, as your going through alot.
Thinking of you always Terri xxxxxxxxx

Colleenc
02-22-2011, 07:34 PM
Hi Terri,

I didn't hear back about my cardiac stuff, but my arm has a raging infection. I go for an x-ray in the morning to see about the glass. I'm 99% positive there is some still in there!!. I am feverish and my arm is very sore and swollen.. UUGGGHH!!! Just another thing for me to fight.... I still have my PICC line so it will be easier if I need IV antibiotics, which it's looking like I will.... I will keep you posted!

C

Colleenc
02-23-2011, 12:22 PM
me again!!! Just heard back about my x-ray and I have not 1 but 3 pieces of glass still in the wound. Going to see NP in 1hr for antibiotics and waiting to hear from plastic surgery doc as I will need surgery to have these removed!!! UUUUGHGHGHH.... I think I might just go crazy.... Oh and to top it off one of my lovely dear children gave me a lovely runny nose and cough!!
Still smiling (just barely)

C

Chachi
02-23-2011, 05:15 PM
Holy crap you've been through a lot lately. I'm so sorry Colleen. Hopefully the antibiotics will kick in quickly. One thing after another eh! I can relate. Take it easy.

Wendy

Chachi
02-23-2011, 05:16 PM
How come you get to be a pit bull and I'm a tadpole?????Oops-this was a question for Terri-not Colleen(who is a lttle guppy!)ha ha

w

tgal
02-23-2011, 05:37 PM
LOL @Wendy- There is actually a thread called "moving up in the animal kingdom' that talks all about the "climb" in the forum. Check it out!
"

Colleenc
02-23-2011, 09:25 PM
Little Guppy says LOL!! Still waiting to hear from plastics doc to see when these with be taken out. I feel feverish and sick tonight, hopefully the oral antibiotics work or I will have to go back on IV!! Never ends!

C

Chachi
02-24-2011, 08:55 AM
Hi Colleen,

Just checking in to see if you are feeling any better today. Hope so. Are the meds helping? I'm considering cleaning the bathroom. Fun times. I'm feeling pretty good -knock on wood, but I'm learning not to overdo it because if I do I seem to be back at square one.

Take care,

tadpole

Peridot_Gem
02-24-2011, 11:53 AM
Hi Terri,

I didn't hear back about my cardiac stuff, but my arm has a raging infection. I go for an x-ray in the morning to see about the glass. I'm 99% positive there is some still in there!!. I am feverish and my arm is very sore and swollen.. UUGGGHH!!! Just another thing for me to fight.... I still have my PICC line so it will be easier if I need IV antibiotics, which it's looking like I will.... I will keep you posted!

CHello Colleen,
Oh i am sorry to hear your arms carrying an infection and if you do have glass in it and they remove it plus the stitches, nurses will have to be ontop of you with it healing.
It's a good job we all fight now and again because this condition can really drag your strength down, i hope your fever as carmed abit as i've not been on the last 2 days my systems been having a right field day of pain and my concentration anyhow.

Yes keep us posted mate and i hope things pic up for you abit because you dow half need it at the mo.

Peridot_Gem
02-24-2011, 11:59 AM
How come you get to be a pit bull and I'm a tadpole?????Oops-this was a question for Terri-not Colleen(who is a lttle guppy!)ha ha

wWendy lol mate. Just remember your a little fishy on the lttle dishy, oh i am laughing here that's made my day better than pain.

You start from the fish world and go bigger by how many posts you add to.lol On my staffysite i'm with it's done through star colour changes instead of names, everytime i alter i tell my hubby the next step as i'd never heard of the names before and he dow half laugh but tgal's explained why.

Peridot_Gem
02-24-2011, 12:05 PM
Little Guppy says LOL!! Still waiting to hear from plastics doc to see when these with be taken out. I feel feverish and sick tonight, hopefully the oral antibiotics work or I will have to go back on IV!! Never ends!

CHello Little Guppy,
Well i hope you hear soon about when the pieces will be taken out as it's not healthy while an infection is there and i do hope the antibiotic's help to keep it clear colleen.
All the best mate. xxxxx

Colleenc
02-24-2011, 12:49 PM
Still feel like crap today!!! Sorry to hear your in pain Terri XOXO!! Just took the antibiotics this am don't notice any difference yet. I dropped off the x-ray to the doc today so that he can decide how to best remove the glass pieces. I think it will be done tomorrow. The other wound (upper arm) seems redder and more sore today too. I also think I have a chest infection from a little cold the kids gave me. I coughed and coughed up crap this am. It feels better now. It's hard when there is a number of things going on to decide what symptoms goes with what!! LOL I think my body is very tired and is having a hard time fighting all these viruses off. My rheumy called this am to say she was concerned about my adrenal glands going through the stress and infection (since I'm still recovering from the adrenal crisis) she said to keep a close eye on my symptoms over the weekend.
Hey tadpole glad you decided to take time off work!!! I know thats a hard decision, I have only ever been off once before( for and extended period) this time and I'm not enjoying it. I desperatly need structure in my day. I work in a hospital so they are a pretty understanding group of people and know when I'm sick I'm really sick!! I'm counting the days until I will be able to go back....

Peridot_Gem
02-24-2011, 01:08 PM
Colleen i ah surprised you feel like crap mate with glass in your arm, that will be surgery colleen to open the wound up to get the glass out properly but having an infection won't help it one bit for trying to heal although when it does happen i'm touching wood for you this end that it heals ok with them keeping a good eye on you and take it steady with how you've been passing out.
Yesterday to me was a strong build up of the lupus going mad as the swelling on my lung was like someone thumping at my back and i thought my depression made me bad, lastnight mainly besides the day could'nt stop crying at different times, it's so hard to fight mentally when you've got other ailments to contend with.
You need to be very careful with a chest infection and keep warm, the crap is a build up of congestion coming off your chest and lungs better to get it out though, they've got me on a nightly steroid for that to keep it lose while sleeping and it comes up of a morning because i've got bronchitis besides.
If your immune system is low it won't help in anyway and if you have autoimmune diseases they love a good kick about with the Lupus and that's why a large majority of us are in such a bad way.

Besides Doctor's/leaflets and any info besides reading up, the knowledge never ends on the condition itself.

Let me know how things go when your able to especially about your arm and how your feeling with your chest. xxxxxx

Colleenc
02-24-2011, 08:26 PM
You are so right about the mental fight!! I have always been OK that way, but this last bout of illness is sure testing me. It helps that I work in mental health and have had a lot of exposure to all sorts of people suffering with verying degrees of mental illness. But sometimes I get depressed when I can't fix what is wrong or when I don't know what is wrong. That bothers me the most!!!
My chest is better tonight. But it will be when I wake up that is the real test. Hopefully the antibiotics they have me on for my arm will help it. I have still not heard from doc about arm. Hopefully tomorrow, I left them a message late today.

C

Peridot20_Gem
03-07-2011, 07:43 PM
Hello Colleen,
Sorry i've not been on mate, hows your arm and face now after the healing process and how you going on your medication??

Thinking of you mate. Terri xxx

Colleenc
03-09-2011, 01:26 PM
Hey Terri,

Where have you been?? I missed you! My face has healed although I now have what my kids refer to as a butt chin! The scar is still very fresh so hopefully it will fad over time. My arm, I had surgery on it last Monday 21/2 hours of it, to have the glass removed. The upper cut has healed and has the staples out (looks like crap). But my forearm where the glass was has stitches until next week. It is all bandaged up, but when the nurse changes it I got a good look at it. It looks like my arm has been through a meat grinder. I also lost all nerve sensation ( the doc is not aure if that will come back). But it's my arm at least not my face!!! I'm hooked up to an event recorder for my heart for 30 days (still having the syncope had 3 in the last week, but I have not hurt myself)! I feel like crap today, headache and very tired I slept all last night and then again for 3 hours today (totally not like me I usually can't sleep) and I could go back for more now. I just feel weak and very thirsty. So I'm keeping an eye on it! Hope you day is good...

C xo

GoodDog
03-09-2011, 01:37 PM
Thanks for updating us Colleen. I'm glad you're healing but it's so sad you had to go through all that because doctors wouldn't do something sooner! I hope they get to the bottom of it quickly now.

Peridot20_Gem
03-09-2011, 06:24 PM
Hey Terri,

Where have you been?? I missed you! My face has healed although I now have what my kids refer to as a butt chin! The scar is still very fresh so hopefully it will fad over time. My arm, I had surgery on it last Monday 21/2 hours of it, to have the glass removed. The upper cut has healed and has the staples out (looks like crap). But my forearm where the glass was has stitches until next week. It is all bandaged up, but when the nurse changes it I got a good look at it. It looks like my arm has been through a meat grinder. I also lost all nerve sensation ( the doc is not aure if that will come back). But it's my arm at least not my face!!! I'm hooked up to an event recorder for my heart for 30 days (still having the syncope had 3 in the last week, but I have not hurt myself)! I feel like crap today, headache and very tired I slept all last night and then again for 3 hours today (totally not like me I usually can't sleep) and I could go back for more now. I just feel weak and very thirsty. So I'm keeping an eye on it! Hope you day is good...

C xoHello Colleen,
I have'nt been on mate because my registration played up and stopped me from using the site and the admons helped me so much, i've finally got on after 2wks by being accepted by my other email address and new password, so it's starting afresh.lol
Oh your kids are only joking dow take it to heart but i am glad to hear your face as healed but if you have good healing skin which i do now at 42 you should be ok. My god over to hours to remove the glass it's a good job nurses was coming in to see to ya, it most likely looks like crap because of how they stapled your arm, well i hope your forearm looks better when the stitches have been removed have they been put in close or wide stitches apart because when they do it that way it makes the scar look widder than it should.
They should make these doctor's go to a stitching class i reckon because some ah got a clue how to stitch nicely. You dow half make me laugh mate your arm looks like it's been through a meat grinder. [Time to worry is when your looking like frankinstein's double]
Well fingers crossed mate i do hope your nerves come back but that's a risk, it's like when i mentioned my finger that time, i've got a nerve still alive where it should have been cut out with a red swelling around it and i've lived ever since constantley watching it never letting it get touched the pain is a right quick shot. Well like you said it's better than your face because this sjogren's disease i have paralises my face and other parts at times and you dow half feel like you've had a stroke and it takes hours for the feeling to come back, christ we're in a right rocky boat.

Well i'm really pleased you've not hurt yourself in the last 3 episodes and lets just hope this 30day event recorder can show some light on thing's, so they can sort you mate and rest won't hurt you.

I'm just getting more affects like i mentioned off the plaquenil and it ah kicked in fully, i'll master it but just hope it does'nt raise my seizure levels because i'll be in a right mess then.

You takecare mate and lovely to hear how things have gone for you.

Hugs & Kisses to you colleen xxx

Peridot20_Gem
03-11-2011, 09:28 AM
Ado mate,

How you feeling today and i hope to god since you last spoke you've had no more pass outs plus hows your arm feeling, mind you you'll be alot better when the stitches come out or do it yourself mate lol as i have done in the past saves messing with Doc's.

((Hugs & Kisses)) to you mate and thinking about you. xxxxxxxxx

Colleenc
03-11-2011, 02:39 PM
Feeling extremly fatigued the last few days, also woke up this am to restless sore legs and lower back. Not sure what is going on!!! The arm is still sore but healing! yes I will take the stitches out myself!!! I took the staples all 26 of them out with my hubbys help out of my upper arm last week!! Unfortunantly I have had 2 more syncopes. I whacked my head during the one earlier today, no cut just a big bump I needed to ice. Boy this is sure starting to wear on myself and my family!! Everyone is scared to leave me at home alone. I'm seeing doc next week, I'm going to push for more to be done, I need my life back!! Hope your having a a good day!!

C xo

Peridot20_Gem
03-14-2011, 12:16 PM
Hi Colleen,
Sorry it's took me a few days to answer you mate and i hope you've had a better day today.
It sounds like it's draining you abit at the moment but like yourself it's the dreaded pain i can't stand, it's the lupus in your joint's mate it dow half murder you. Oh i am pleased your arms healing, yes i could just image staples being taken out.lol
Hows your head mate not to sore i hope and i know i should'nt say this but i'm glad you had a bump, it's better than being cut open left right and centre all the time.
Colleen i know you live in canada but do they allow you to have alarms over there, what you wear around your neck and it would take some pressure off your family and yourself in one way because as soon as you go down the alarm alerts the emergencey services.

Let us know mate please how it goes with your Doctor and all the very best colleeen.

Love Terri xxx

Colleenc
03-14-2011, 09:34 PM
Yes they do have alarms, My brother inlaw installs alarm systems and told me we could get one to add to our home alarm. So just waiting to see if he can do it. My jaw bone and hip are killing my excrusiating pain!!! I need MRI on my hip and head asap. The think I have necrosis of the joint and bone due to all the steroids. I can hardly open my mouth to chew anything and it' swollen out the side of my head. OH one thing after another. I see the rheumy thursday. Kids are on March break so at least soemone is home with me this week!!

C

Peridot20_Gem
03-15-2011, 09:28 AM
Hi Colleen,
Well i do hope you can get an alarm fitted with your brother in law as it will ease the pressure abit and make your family feel more reassured.
His your jaw and hip murdering you off the latest fall? if so i'm really sorry to hear it, my god you am in the wars terrible and are they pushing it quick for an MRI, i'm due one of those this year my epilepsey nurse ah mentioned it but next time i see her i'll mention it to her, they run one to check my head [that sounds well dow it]lol
Colleen that's why i've refused the steroids mate before the plaquenil they mentioned presidone and a tablet to stop it causing brittle bones i soon refused it, steroids can cause some right side affects besides possible weight gain due to people's hormones.
Well i really wish you the best of luck concerning thursday and and seeing your rheumo and while your seeing him i'll be up the hospital having the caffeter job done, so we both have a nice day to look forward to.

Well i am pleased your kids are with you and rest up well till you recover properly.

All my love to you mate xxxx

Colleenc
03-15-2011, 07:53 PM
I wish I had not gone on the steroids. They are what the cause is of most of my recent problems!! The Jaw and Hip are not caused due to my falling. I think it all has to due with the massive amounts of steroids I have gotten in the last 2 months. I really hope the doc agrees to start lowering them on Thursday!!! I have gained 10lbs in 2 months and remember for 6 of those weeks I was hardly eating... I also think (well I know) I have been very moody to my family, so they will appreciate the lower dose too!!!
Goodluck on Thursday..

C XO

Peridot20_Gem
03-16-2011, 05:38 AM
I wish I had not gone on the steroids. They are what the cause is of most of my recent problems!! The Jaw and Hip are not caused due to my falling. I think it all has to due with the massive amounts of steroids I have gotten in the last 2 months. I really hope the doc agrees to start lowering them on Thursday!!! I have gained 10lbs in 2 months and remember for 6 of those weeks I was hardly eating... I also think (well I know) I have been very moody to my family, so they will appreciate the lower dose too!!!
Goodluck on Thursday..

C XOHi Colleen,
I hope the Rheumo considers lowering them abit, when i was on them years ago i was like yourself did'nt eat much and in 3yrs i went from 7 & half stone to 18st and it murdered me and other meds they had me on was causing me to lose milk from my breast i've had a right life with the lot, so i know how your feeling and the more you keep blacking out you will hurt your body bad, for christ sake they should be helping you quicker in one way.

Well all i can say mate is good luck to we both and i really wish you all the best with what your suffering.

Hugs Terri xxx

wow
03-17-2011, 10:06 AM
My heart goes out to you. Noone should feel that bad. I'm glad you get to have a day with your family to distract you from the illness for a while. Try not to over do it. I hope you feel better soon.

Peridot20_Gem
03-18-2011, 10:05 AM
Hi Colleen,
How you feeling today and are you still as sore but it would be lovely mate if you can let we know how yesterday went and i really hope they listened to you refering the steroids making you worse.

Hugs & Kisses to you colleen. xxxx

Colleenc
03-18-2011, 04:26 PM
Yesterday went well, bloodwork, MRI for my hip (booked in a few weeks) Jaw x-ray and new pain meds. I can also drop my pred down a bit, not as much as I hoped and then hold till I see her again in 4 weeks. She doesn't want to lower it to much because for the adrenal problems. But even a little might help. She does agree that the steroids are causing problems, but I just can't stop taking them unfortunantly!! )<: Waiting for the blood work to come back to see if I need to take a potassium supplement (for my crampy legs and feet) and also she wants to check my blood counts. If they are normal then I can restart my Imuran!! How did your day go Terri??

steve.b
03-19-2011, 12:32 AM
many of us have been reading your post, thanks for the update.

a little drop in pred is good.
hope the other tests are as positive a result.

Peridot20_Gem
03-19-2011, 09:27 AM
Yesterday went well, bloodwork, MRI for my hip (booked in a few weeks) Jaw x-ray and new pain meds. I can also drop my pred down a bit, not as much as I hoped and then hold till I see her again in 4 weeks. She doesn't want to lower it to much because for the adrenal problems. But even a little might help. She does agree that the steroids are causing problems, but I just can't stop taking them unfortunantly!! )<: Waiting for the blood work to come back to see if I need to take a potassium supplement (for my crampy legs and feet) and also she wants to check my blood counts. If they are normal then I can restart my Imuran!! How did your day go Terri??Hello Colleen,
Thanks for letting we all know how the appointment went.
Lets hope your blood work comes ok and the MRI lets them know more of what your going through. I can't understand them not wanting to drop your presidone that much because if it's doing more damage they can afford to do it, it's not like your being pulled off it completley for it to put you in a bad way and steroids always cause problems for anyone.
Well i just hope nothings to serious mate with what you've been going through and it is alot for anyone ones body to take in one go.

I had the cafeter test mate [done a thread on it] my bladder is to small for the amount of urine i need to pass i'm booked in for the gyno in june for more meds again ahhhhhhhhhhh to control my bladder before i'm due to go to the toilet.

Have a lovely weekend mate, well the best you can. thinking of you loads xxxxxxxx

Colleenc
04-05-2011, 08:57 PM
Hey Terri,
Had my MRI done on my head and hip. Both are good No AVN in my hip Thank god!!! But I broke my pelvis last thursday (they during one of my syncopes) Had incredible amount of pain for the last few days, can hardly walk. Still need to do ultrasound anthor x-ray and bloodwork. They also figure I have an infection there too, because my WBC has been elevated and is getting worse. With all the fluid they think there may be an infection in my bone. So waiting to see doc again later this week. To see what can be done about this. I also passed out 2 more times today. Waiting until April 19th is going to be so long to see that dam cardiologist to get this all better!! uuughgh...Getting mad!! and feeling like life will never be normal again...I have been sick for 3 months now and not with little stuff!!!

steve.b
04-06-2011, 06:38 AM
broken pelvis, bone infection.

they could be the basic cause of most of your symptoms.

if so you are finally on the road to recovery.

Peridot20_Gem
04-06-2011, 08:00 AM
Hey Terri,
Had my MRI done on my head and hip. Both are good No AVN in my hip Thank god!!! But I broke my pelvis last thursday (they during one of my syncopes) Had incredible amount of pain for the last few days, can hardly walk. Still need to do ultrasound anthor x-ray and bloodwork. They also figure I have an infection there too, because my WBC has been elevated and is getting worse. With all the fluid they think there may be an infection in my bone. So waiting to see doc again later this week. To see what can be done about this. I also passed out 2 more times today. Waiting until April 19th is going to be so long to see that dam cardiologist to get this all better!! uuughgh...Getting mad!! and feeling like life will never be normal again...I have been sick for 3 months now and not with little stuff!!!Hello Colleen,
Nice to hear from you mate plus how you got on. Well i am pleased about your head and hip but not about your pelvis as soft as it sounds i broke mine years back in my 20s through going down on concret with a seizure and as it broke it left jaggered edges for it to re-join and then it went again and all the teeth as they call it completley shattered off and it's just touching together now but instead of it being straight across it's healed on the slant, you will be sore but i do suggest sitting on loads of pillows i used 3 at a time to ease the pain and when in bed lie on your side and while walking about you need arm sticks to support it while healing, i'm being straight i'm just totally shocked and feel so much for you, as it takes the pelvis some time to heal.
That's all you need an infection to go with it and passing out again as about done you in to where it's unbearable to move, watch for bad bruising on the pelvis and if it does bruise, get someone to put hot olive oil into there hands and warm it slightly and rub it in slowly it brings the brusing out quicker I JUST CAN'T BELIEVE THIS COLLEEN.
Well i'd have thought your appointment would have been sooner than the 19th to sort things out, my god they dow rush themselves it's just the same here.

Colleen do your best to rest and i know it sounds soft but the more you move about without support your pelvis wow heal correctley, i am thinking of you dearly mate & all my love Terri xxx

Colleenc
04-06-2011, 08:17 PM
I can't believe it either Terri!!! It is all bullcrap!!! I have more test on my pelvis tomorrow and Friday then I should have a better Idea of how bad it is and what we are going to do about it.

Steve I really hope your right, I'm starting to think I'm going crazy...

C

Peridot20_Gem
04-07-2011, 02:38 AM
Morning colleen,

I tell you something your really having to contend with alot. When they do the test on your pelvis as them if you can see the scans or whatever tests they're doing as the arthritis specialist showed me mine and at the time i was 12st with meds and he said to me try and keep weight off your body because if your carrying weight the pressure when you go down can cause it to go quicker [i thought easier said than done with meds that make you gain weight]
Colleen this lot will knock you about because it did me but be really careful because of how you passout, that's my main concern and how it's damaging your body.