Just popping in to say welcome to all the new people on the boards and to say Hi and I miss all my old (not meaning age....hee...hee) friends on the board. I think some of you know my hubby (blue named him braveman) has been very ill and I just don't have the time to get here and keep up. I miss being here and talking with you and hearing such great advice and discussions but I will pop in when I can. Please keep braveman in your prayers and I will check in when I can even if I can't take the time to post back.
By the way, I think it is very strange how fibro takes a back seat when we are needed to help a family member. We had a discussion about that once before, I think it must have something to do with our adrenaline kicking in. Interesting anyway. Take Care.
So sorry to hear about your hubby. I will keep him in my thoughts and prayers.
I do think we are able to step up to the plate when we have to ,and our bodies are nice enough to cooperate. But I've found that afterwards is when it comes back with a vengence. When I went through the illness and death of my brother ,and the coma and death of my mom I was pretty strong and stoic,but afterwards totally fell apart physically and emotionally. I liken it to post traumatic stress . But it's great that our bodies and mind do what we needs to be done when we most need it. Sometimes I look back and wonder how i ever got through it. but I did ,and I'm a stronger ,better person for it.
Hang in there ,and take care .....this too shall pass....Kat...
Thanks Kat. Yeah I know what you mean after bravemans cancer and chemo I went through the crash and hit the wall pretty bad. I do know it will pass, but time sure seems to slow down when we are going through it.
miss you too. totally understand. how is our dear man doing? how is his breathing? you give him a hug for me please. and catch one for yourself.
i feel something going on there. need to share? you know my funny feelings.
you know you can lean on me anytime. what's going on that pushed fibro into the back seat again???
Hi blue, I filled you in and gave you more info under your thread of having more tests.
Braveman went to ICU on Sat. morning and the CTscan revealed multiple blood clots in both lungs and a clot behind his left knee. They did an emergency procedure of putting a filter in his artery for the knee clot. Yesterday his daily X-ray revealed that both lungs now have fluid or infection in them. This is in addition to the clots. Clots don't show up on X-ray but of course the shadowing did. At first it was small portion in the lower right lung (that was a week ago Sat.) and now it is in both lungs (bilateral). He is on a full face mask of oxygen at 50% titrate and can't seem to get lower. Maybe the doc will write orders to give it a try in a couple of days. He was allowed ice chips this evening, that made him happy. His body is worn out and so is he from fighting all this 'stuff'. The next step will be to determine if this is a bacteria or if it is caused by the medicine he was taking for his dermatomyositis. According to the docs having dermatomyositis makes him more prone to blood clots and these types of things.
Yet dispite all of this the docs tell him maybe he will go home on Fri.. To see him now in ICU I just can't imagine it. Without the O2 he can't breathe well enough when he starts moving around. I have just put it in Gods hands and will watch for the miracles. I guess the docs know that the massive amounts of antibiotics will start to work and he will improve quicker than I think. And if they don't they have other procedures up their collective sleeves to sort things out.
I will let you know how things are going, five to six hours of sitting in his room on those hard plastic stack chairs they use for visitors in ICU has given my fibro new ideas. I will take care of me.....and you take care of you....Okay.....so we can both be well.....and I will put braveman in the hands of a higher power.
i did read in my thread but you did not go into this much detail. dear sweet braveman. you both have my heart, my meditation, my dance, my energy to draw upon any time you want. there is so much fallout after chemo. so many ways the body says no. icu is a hard place to see the man you love. let me take the stress of this for you. your load is heavy little sister, let me help you carry some.
so, fibro settled in your arse? and your low back? in my mind i will massage your pain away. gentle warm hands rubbing the fibro buddies and soothing them.
i have my first of the series of injections in my right knee today. before that i will dance like a fiend in a frenzy for your man.
my deepest love to you both,
ps i will ask the redwood tree to talk to his friends in your neighborhood. i will ask them to gift over some of their mighty energy to you and braveman. i will ask the trees to make more oxygen for him to breath, deep and clear.
Good Luck today blue, get that knee in good dancing order and we will both dance when this is all over. Haven't been to the hospital yet, but I hear the grey plastic monster calling to my 'arse'.....come....come it says I want to smash that jello bottom on yours into more uncomfortable shapes today.
Made my morning call to the ICU nurse. Still no improvement in his lungs and no way he can get lower on the O2. Take care of that knee and I will keep you updated.
i will be thinking of your arse today. poor bum. i am dancing in my mind where it counts most for our dear bravemans lungs. thank you for taking time to pop in and keep me posted.
fibro babies and fibro monsters begone!!!!!!
a fanny massage and love,
Just to send your braveman and you my love. I have recently had another problem diagnosed along with that of my heart and liver failure. As my kidney are not so good on a permanent basis because of the lupus, I honestly thought that was all they were going to find. Then lo and behold I am now told there is a problem with my lung function, and gosh don't I know it. I am not in the same situation as your darling husband, I am here at home but I sure can relate to the fight to breathe and the panic it brings when you can't.
I know it won't be of much consolation but tell him from me I have him in my heart and my mind and when I take a breath without struggle, I will take one for him too.
My love to you both my friend.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Thanks Golden he will appreciate the extra breathe.
Things got a little tense late Tue. night and/or early Wed. morning. Bravemans O2 dropped to 50% and without the oxygen he really got disoriented and 'out of it' so to speak so they had to intubate (put the tube in his throat) to help him breathe. Of course when they do this they sedated him and the machine helps him breathe. The meds to sedate him made his blood pressure drop so they gave him dopamine which made his heart rate go up (both in the dangerous level) so they switched to a different med and played the game of give a little sedation and then give him the med to stabilize his blood pressure and heart rate.
They removed the tube late this afternoon and he seems much better but he is not out of the woods, because he could have the same thing happen at any moment. Originally the docs thought he would have the tube in until Sun. at the earliest. They at least got to do the bronchioscope with him sedated so that helped. Don't have the results back yet, hopefully tomorrow. The danger here is that this infection could spread out of his lungs and that could be as the docs put it 'catastropic'. In other words fatal because he doesn't have an immune system to fight off the infection. He is very ill! I had a little crisis of faith last night and am trying to hold on to all things
positive. I am a little better today but his O2 levels still flucuate and aren't as high as they should be and we don't know the test results and I still worry.
Of course fibro has zeroed in on my worry! I knew the minute I woke up this morning how bad it was for me to let the worry get a hold cause it left the door open for the fibrobuddies. No matter I will take some deep breaths (something I wasn't doing either) and take a visit to the mountain to try and clear my mind this evening.
Golden you take care of yourself, hugs to you and compassionman.
Blue how is the knee doing?
I will keep you updated when I can. So much happening, there is talk that braveman will be moved to the step down ICU tomorrow. That is a good sign.....I think.....oops.....there is that worry again! So unusual for me to not see the positive side of everything. This has really thrown me for a loop!
oh girlfriend. you tell braveman i said the heck with my knee, i'm going right now to dance for him.
of course this has thrown you. to be expected. we are talking about your life partner here. how i wish i had magic words. there are none. there is only love. perhaps it would be a good idea to cave in to those emotions when you are home alone, free to express your own fear.
you can always come here and lean really hard on us. we will hold you up and dry your eyes.
i will be up on the mountain this weekend. i will send some sunrise energy to braveman. for you i send the gentle energy of sunset over the lake. serene, brilliant, colorful sunsets filled with soft powerful energy.
how are your children holding up? i know they are adults, but when it comes to the thought of losing one of our parents we never grow all the way up. does that make sense? sorta.
i am off to dance now. oh i told the fibrobrats to leave your behind alone. have they?? giggle.
ps. goldie old girl i am heartily sorry you are so sick. how are you holding up emotionally? we can breath together.
The fibrobrats have left my fannie alone, but they are everywhere else. They just love this worry and tension. I am trying to take deep breaths, that is what braveman needs to do, but it is so funny I am always on him to breathe deep and I know I am not doing it myself. Of course I don't realize it until I am home for the evening and can settle down and review the events of the day.
Braveman has been moved to a general pulmonary floor. He is back on the same floor he started with over a week ago and the same nurse and techs. They are busy and overworked and can't give him such individualized attention. I just worry all the time, even though he is out of ICU he is still very sick and very weak and he could have any number of 'catastropic' things happen to him. The doc today said we will take it one day at a time to see how he progresses, his lungs are still 'crackling'!
Tomorrow social services is suppose to talk to me about short term rehab facilities in case he needs them to get strength back and be able to manage on his own. That way I can tour them to see which one I may feel is better. He has such a long way to go to get back to me and the family.
I don't like all these meds and I want to get him off some of them, the rhuemy doc is trying to start him back on some of them. Of course I can't control much of it while he is in the hospital and I know he needs the antibiotics and blood thinners to clear his lungs, but oooohhhhh blue when I finally get him home he will have such a regimen of good old vitamins. All these drugs are unbelievable!!!! He was taking quite a few before this some for good reasons for a lot of years (high blood pressure etc.) but he takes so many now just to get rid of the pulmonary problem....well I've vented!
My children are doing ok...thank you for asking about them. They deal with things in different ways being total opposites as most siblings are. The most important thing is they are there for their Dad. He appreciates so much the time they spend with him at the hospital. Our son spent last Mon. evening with him in ICU watching a ballgame. Even though braveman was intubated Tues. night sometime, when he was finally extubated on Thur. evening one of the first things he asked was how our sons trip to Texas was on Tue. (he traveled for his job that day) He couldn't remember much of his previous two days but he did remember talking to his son about the trip he would take.
Thanks for listening guys I need to get myself something to eat I am beginning to crash. I will keep you posted when I can. Thanks for the support. I will 'wallow' in everybit of beauty and majesty you can send me from the mountain blue.
The fibrobrats are still having a good romp with my body but I am calming down a little and although I still have plenty to worry about I am being a little more positive. Having a good attitude just drives those fibrobrats crazy!!!!
heck of a road ain't it? worry, breath, worrry, breath, worry. glad our man is out of icu, but i will be concerned about his care, as you are in that busy ward he is in now.
i have not heard from bilij in ages. we must assume she is off playing and having fun. we dare not think her fibro brats are ripping her. no no.
i sent all my breath to braveman and goldie at sunrise on sunday. i swear i felt them both so strong, so real. i was blown away. i could smell that hospital smell. then i smelled the ocean. connection.
hang in there kiddo. come scream, rip, vent, any old emotion you need to dump you come here and drop it all. we are strong, we will carry you. and i shall dance and dance, breathing deeply.
love you little sister,
Hello everyone, I'm sorry I haven't been posting much this summer.
I wish I could say I've been too busy, but that's not the case. I've
had a stressful summer. The heat has kept me indoors too much. The
air conditioner is not a friend to my fibromyalgia to say the least. I've
tried to sorta' keep up with everyone, but often miss days at a time.
Glojer, I'm so sorry to hear your husband has had more problems. My
prayers are with you both.
Blue, your dancing on the mountains, inviting us to the lake and keeping
our imagination in beautiful places, keeps us all together as special friends.
I think of Golden so often. She's another friend who dances and sails with us.
Thank you for remembering my name..... I'm going to try and do better about
staying in touch.