We haven't heard from Lightwarrior in 3 weeks. She was still in the hospital with an unconfirmed infection (possibly in her kidney stones). I'm worried. :unsure:
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We haven't heard from Lightwarrior in 3 weeks. She was still in the hospital with an unconfirmed infection (possibly in her kidney stones). I'm worried. :unsure:
Hope she is ok. Does anyone have her email?
I emailed her (from her Member page) and included my phone number in case she's in the hospital without internet access. I sent it after I posted this.
Sorry I worried you. I spent 10 days in the hospital and then home with a Picc line (did I mention in the middle of all this the bank foreclosed on my landord and my kids had to move us to a new house that I had found before i went into the hospital). Even though I did no real physical labor on the move it was very draining, arranging U-hauls and changing utilities etc. etc. I have had 10 days of IV Invanz and 10 days of 3.75 gms Zosyn every 6 hours at home. My fevers are finally gone but I have been incredibly tired and my white count is down to 2.1 my RBC's are 2.3 and my Hemoglobin and Hemotcrit is 8.2 and 24. I suspect this is why I am so tired. The last labs were done by Infectious Disease doc, I called my Rheumy, his office has tried for 3 days supposedly to get these labs. I wonder if the 25mg dose of methotrexate is too high?? I had hoped that getting off Cytoxan and switching to mx would improve my counts. Got my PICC line out today and go back to work on Monday (I only have 10 hours left of leave time which means not only no paycheck but no insurance) My co-workers will help but I'm worried that my energy level is still too low. Short of a blood transfusion can't they give me something to help my red blood cells reproduce in greater quanity?Quote:
Originally Posted by Sangye
I'll try to post more frequently.
I'm glad to hear that you are home Christi, but not glad to hear of your overall situation.
You do not need the stress of having no insurance like that. I talk to some other Weggies that are in the same boat and it is painful to hear their stories. I can't imagine what you are going through.
I hope your energy level gets up there soon. Your white count is too low, that scares me. You are very susceptible to another infection. I hope you get your last blood results soon to go over with Rheumy. When do you see your Rheumy next?
I see him Monday at 03:15, I'm a little irritated that he didn't call ID doc himself for results. I'm having CBC and CMP (complete metabolic panel) done Monday morning. I know I'm very susceptible to another infection and it worries me also.Quote:
Originally Posted by pberggren1
I've never heard of CMP before. Do you know what that all entails?Quote:
Originally Posted by Lightwarrior
I can certainly understand your frustration and worry. You are in my prayers.
Pottasium, Glucose, Total protein, Albumin, BUN and creatinine, Sodium, chloride, bilirubin, carbon dioxide, calcium. Thanks for the supportQuote:
Originally Posted by pberggren1
Oh yes, I just forgot. They do it differently up here in Canada.Quote:
Originally Posted by Lightwarrior
I am SO relieved to hear from you! You're really going through it, Lightwarrior. And having to move in the middle of it...exhausting under the best conditions.
I know we've discussed this a long time ago, can you get disability through your job? I understand the insurance issue-- you can't lose coverage for one day. I'm sure you've thought of all your possibilities a zillion times over. I'm just getting more and more concerned that working is keeping you from being able to get better. You've been seriously unwell for quite awhile now, with one thing after another. :sad: Big hugs to you... I know you need them. :hug2:
Lightwarrior glad you are home. Gosh you have gone through so much, keep your head up and take care of yourself.:hug2:
I can get disability through work which would pay me 66% of my salary after being off for 90 days (how to live through the 90 days is a challenge) then I could pay for my own Insurance which would go from the $120 taken out of my check each month to $1580.00 per month. If I had no family to support, no bills and could find a good homeless shelter then it might work. Since I am only 54 I'm not close enough to medicare, but I have toyed with the idea of applying for Social Security Disability for the medicare. Then my hospital disability would pay the difference between what SSI paid as a living wage and what my hospital benefit would be. That would take away the $1580. Cobra payment and make it doable. I remember some discussion on SSI in one of our forums here.Quote:
Originally Posted by Sangye
I keep hoping that each health challenge will be the last hurdle to moving on healthier, My rheumy thinks I am in remission so if I could get rid of the stones, the infection I could get back to a modified normal. But then why are my numbers dropping? Am I not going to be able to take Methotrexate?? and were the fevers a side effect of the Methotrexate vs infected kidney stone?? I do seem to be extremely ill all of the time and unable to "pretend" my way out of it.
I wish you well, and sorry to hear you have been having such a rough time, i hope you regain some strength an are able to sort things out. God Bless
thanks, I am feeling a bit stronger today.Quote:
Originally Posted by eileenv
hope things look brighter soon for you lightwarrior.even s little light helps :hug1:DEE x
Thanks Dee, a little light helps a lot :cool:Quote:
Originally Posted by DEE
:thumbsup: take care of you DEExQuote:
Originally Posted by Lightwarrior
Lightwarrior, hope the stones disappear soon, your doing the best you can.
So sorry to hear this Lightwarrior, and having to move as well. The quickest way to get your RBC up is a blood transfusion, there is an iron infusion but this only works if the reason you are anemic is because your ferritin levels are low. There are also EPO shots if the problem is that you're not turning the iron into red blood cells, but again this takes time to work. I know in the UK they order a blood transfusion if your haemoglobin drops below 8, higher than that they use iron.
I really hope they get you sorted soon, you can't work if you feel like poo! That's no use to anyone, surely your employer would understand that it could lead to you being awa from work much longer if you push yourself now?
Social Security Disability doesn't kick in for 5 months, assuming they approve it on the first round (I don't think you'd have difficulty but you never know. It might be harder to prove if your doc is saying you're in remission.). They think you can somehow survive for 5 months without income. Then once you get SSDI, you don't get Medicare for 2 years from the SSDI start date. So I don't think this is a good option for you.Quote:
Originally Posted by Lightwarrior
I know you're doing more of a sit-down job now, but I wonder if you could get to an even less stressful floor or something.
It just disgusts me that we have to worry about things like this in the US. We can have medical care or keep our homes, but not both. :mad1:
Lightwarrior, that's quite a handfull. Sorry to hear that, and I wish I had something wise to say to make it all work, but I don't. I can say that I've been thinking about you and I hope that somehow this all works itself out with the least amount of effort on your end. You're in my thoughts and I'm sending all the light I can imagine your way. All the best and I hope those invisible hands that led me to my diagnosis and positive outcome come and take you by the shoulders (that's totally how it felt, like I had these hands on my shoulders that were leading me to all the right places at all the right times). Lots of love coming your way! :hug1:
So sorry to hear about your continued health issues, new digs and the continued melodramtic experience - "to be sick or have a job - which will be the outcome - tune in Friday". It sucks - I agree.... when I had to quit my job due to wegs - I was off for about 1.5 mo and drew some money out of a retirement IRA... that has helped as I am now on month 7 with part-time work.... I am so sorry to have you having to multitask when you are so sick....
Have you ever met someone that tells you " God only gives you enough to fill your plate..." I always answer back " Well he did not have to come on Thanksgiving and bring the whole platter".... I will be thinking of you and hoping to send good energy to you and yours... Watch your WBCs.... infections would be a massive delay in returning to good health...
All the best - Nancy
Sending many positive thoughts your way Lightwarrior, nothing but positives :thumbsup:
Lightwarrior, you've been on my mind the past few days. Haven't heard from you in a bit. You doing okay?
I hope your doing good lightwarrior!
I am doing much better, I have been thinking a lot about all of you lately. I had to cut my methotrexate from 25mg to 15mg a week and for the first time in a year I feel more normal. I have been working a lot and I also teach in an online nursing program which I hadn't done for almost a year. I am required to teach at least one course a year to remain active and since I don't know how long I will feel good. I am teaching a class right now. So all my computer time at night is spent there instead of here. I will be back on soon. Sorry to worry you, I have a lot of catching up to do to find out how everyone is. :hug3:
That's great to hear you're doing so well. You deserve it! :thumbsup:
good to hear from you Lightwarrior DEEx
Happy Birthday Lightwarrior.
21 today, 21 today, happy birthday.
HAPPT BIRTHDAY LIGHTWARRIOR:thumbsup::hug1:
Lightwarroir, so glad you hear from you and thanks for letting us know. Looking forward to more of your updates!
Happy Birthday, Lightwarrior! I hope you have a really great day. It's gotta be better than last year's! :w00t:
Thanks to everyone for the Happy Birthday, most of last year I really didn't think I would see 55, and here I am, feeling better than ever and trying to savor the moment while keeping the Wegner dog asleep. I still get tired if I walk to far so I still use the cart at work, but I can park in an area and walk around. Even though my white count is 7.2 and my Hemoglobin 11.4 (I haven't seen those numbers for a while, I got used to 2.1 and 9) I am still staying out of patients rooms with known infections i.e. MRSA and C-Diff. Amazing how much more energy you have when you have circulating hemoglobing to carry oxygen to the cells.
My Birthday wish is that all of our Weggie dogs will sleep soundly.
From your mouth to the Wegs dogs' ears. :biggrin1:
I'm so happy to hear that you have good energy and are able to get around better. Made my day today. :smile1:
Have a wonderful and very happy birthday Lightwarrior... and many many many more to come. May all your dreams come true, and I'll second that wish.
All the very best to you and your family.
Belated happiest of Birthdays! I hope it was wonderful. Sorry to hear that you havent been well but am very glad you are better. Scary stuff all of it really. Have been thinking of you often and wishing you well. Celebrate everyday! Thats my new outlook. I beleive it is rubbing of on most people around me too. It is amazing how people react to someone when they are in a good mood. Anyway, Hope you enjoyed your dayand continue to enjoy everyday!!!