Help me PLEASE!!!! SCARED!

[MrsSooners74]

First let me say that I apologize for not being around in a long time. I have been going through some pretty tough medical things. I won't bore you all with everything that has happened in the past month... But I am really scared about what has been happening in the past week. I tested positive for MRSA a few weeks ago once again and had to come right off Raptiva... I was off Raptiva for about 3 weeks when I started to feel like a flare was coming on, I thought that maybe it was from stress because I recently fractured my foot and tore some ligaments but what came next was something I was NOT expecting. Within a day my body was in full flare. First it started with my skin turning red and getting HOT and really itchy. I took some tylenol. Put on some Aquaphor and went to bed. The next day I woke up and was so much worse! My back was so hot that I pulled up my shirt to the shock that my "semi-clear" back was not covered with tiny red puss filled things on my back! I started to get scared then but it got even worse when I took my temp and it was 103. After a long discussion with a few of my very very very close friends and some phone calls. I had an appointment with a fabulous doctor. It was out of state but I didn't care.. If I could get some relief from the best doctor out there I would travel across the world to find it... It seemed as though I was getting worse and worse by the minute and by the next day my P was fire engine red all over my body and my temp was still 103 and I just felt so sick. I decided that I needed to go to the hospital. (ok well I needed a little talking to, to actually get me in to go..... ) I thought that I would go in, get some IV's because I was obviously dehydrated and be on my way just in time to make my derm appointment the next day! Boy was I TOTALLY WRONG! I walked into the ER and it was standing room only... when the triage nurse saw me and saw my face they took me in before everyone else and gave me a room. After 13 hours laying in the ER I finally got a bed on a med-surg floor... In isolation of course because of the MRSA! This all happened on Monday... and I just got home this afternoon. they ran all sorts of tests and my white cell count was pretty high and they took alot of cultures here and there. Then put me on 2 different IV antibiotics. I don't know if the doctors there knew what e derm was and im not even sure if I know exactly what it is. I had to be taken off the antibiotics after a couple of days because all of my counts went way too low and I developed thrush in my mouth and my throat... (if anyone has never had it. I feel that it is 10 times worse then strep.) Today I come home after 5 days in the hospital.. On heprin (a blood thinner) because I couldnt leave my room... As soon as I got home my fever shot up to 102.5 and then I noticed something VERY wierd and scary.. I can't sleep tonight because I am seriously stomach sick over this. I don't know what is happening. My lower parts of both legs are swollen along with my feet and ankles. I was walking in the kitchen when I felt something wet on my foot so I looked down and my BIG reddish purpleish P was oozing, leaking, draining some sort of fluid all over my legs and I have now noticed that anywhere I have scales I have puss underneath them which I never had before.... I was hoping it was a one time thing but its been going on all afternoon and ALL NIGHT... I have to sleep with a towel under my sheet and over it too... its sooooo swollen and it just keeps draining... My skin is still so so awful... Does anyone know why my legs are doing this.. and why im still running such a high fever and in so much pain. could someone PLEASE explain what E DERM is and the symptoms and signs..... I am TERRIFIED>>>> PLEASE HELP ME

[ouchyk]

Call your doctor....RIGHT now & see if you can get into UCONN...Don't wait. :eek:

Nobody here can tell u if your e-dermic because they are not doctors!

Whatever it is it needs to be dealt with now, not tomorrow, not Sunday, not till you have your appt next week...right now girl!

Don't make me come down there!

Karen

[MikeK]

Katie,

I agree with Karen. Go to the E/R at UConn or Yale-New Haven. NOW!!!!

Mike

[abbyroad]

Oh Katie sweetheart,
please get back to the hospital...we are all so worried about you...

I'm sending good thoughts, prayers and aloha out to you! :o

Abby

[mdgirl]

Katie,

I'm with everyone else. Get back to the doctor at once.

Take care,

Diane

[nitegale]

First let me say that I apologize for not being around in a long time. I have been going through some pretty tough medical things. I won't bore you all with everything that has happened in the past month... But I am really scared about what has been happening in the past week. I tested positive for MRSA a few weeks ago once again and had to come right off Raptiva... I was off Raptiva for about 3 weeks when I started to feel like a flare was coming on, I thought that maybe it was from stress because I recently fractured my foot and tore some ligaments but what came next was something I was NOT expecting. Within a day my body was in full flare. First it started with my skin turning red and getting HOT and really itchy. I took some tylenol. Put on some Aquaphor and went to bed. The next day I woke up and was so much worse! My back was so hot that I pulled up my shirt to the shock that my "semi-clear" back was not covered with tiny red puss filled things on my back! I started to get scared then but it got even worse when I took my temp and it was 103. After a long discussion with a few of my very very very close friends and some phone calls. I had an appointment with a fabulous doctor. It was out of state but I didn't care.. If I could get some relief from the best doctor out there I would travel across the world to find it... It seemed as though I was getting worse and worse by the minute and by the next day my P was fire engine red all over my body and my temp was still 103 and I just felt so sick. I decided that I needed to go to the hospital. (ok well I needed a little talking to, to actually get me in to go..... ) I thought that I would go in, get some IV's because I was obviously dehydrated and be on my way just in time to make my derm appointment the next day! Boy was I TOTALLY WRONG! I walked into the ER and it was standing room only... when the triage nurse saw me and saw my face they took me in before everyone else and gave me a room. After 13 hours laying in the ER I finally got a bed on a med-surg floor... In isolation of course because of the MRSA! This all happened on Monday... and I just got home this afternoon. they ran all sorts of tests and my white cell count was pretty high and they took alot of cultures here and there. Then put me on 2 different IV antibiotics. I don't know if the doctors there knew what e derm was and im not even sure if I know exactly what it is. I had to be taken off the antibiotics after a couple of days because all of my counts went way too low and I developed thrush in my mouth and my throat... (if anyone has never had it. I feel that it is 10 times worse then strep.) Today I come home after 5 days in the hospital.. On heprin (a blood thinner) because I couldnt leave my room... As soon as I got home my fever shot up to 102.5 and then I noticed something VERY wierd and scary.. I can't sleep tonight because I am seriously stomach sick over this. I don't know what is happening. My lower parts of both legs are swollen along with my feet and ankles. I was walking in the kitchen when I felt something wet on my foot so I looked down and my BIG reddish purpleish P was oozing, leaking, draining some sort of fluid all over my legs and I have now noticed that anywhere I have scales I have puss underneath them which I never had before.... I was hoping it was a one time thing but its been going on all afternoon and ALL NIGHT... I have to sleep with a towel under my sheet and over it too... its sooooo swollen and it just keeps draining... My skin is still so so awful... Does anyone know why my legs are doing this.. and why im still running such a high fever and in so much pain. could someone PLEASE explain what E DERM is and the symptoms and signs..... I am TERRIFIED>>>> PLEASE HELP ME
Hi Katie-

I'm sorry that you are going through such an ordeal but am glad that you made it out of the hospital. This is all I know about ederm:http://www.psoriasis.org/about/psoriasis/erythrodermic.php.

If you are at home and stable, I would follow all my docs discharge instructions and in the meantime try to make it into NYC to see Dr. Lebwohl at Mt. Sinai hospital. Explain to them your problem and hopefully you could get an appt at least by the middle of next week, the latest. Your MRSA complicates things and at least Dr. Lebwhol would be able to rule out the possiblity of you being edermic. If you feel you need help sooner, the suggestion to go to UCONN, or Yale is a great one. Keep your legs up so that the swelling will go down and make sure you take your antibiotics on time and tylenol for the fever. As with any medical emergency, please call 911 or go to the nearest hospital.

Try and stay calm.

I wish you well.
Marie :)

[SandraJean]

Hi Katie,

I am so very sorry to hear all that you have been going thru. If anyone needs a break form all these health problems, it sure is you!!

I'm with everyone else here and feel you should get back to the Doctors and the hospital asap.

Take care

Sandy

[PJ66]

Katie,
I hope you are doing better today. I also hope you either called a dr or went back to the hospital.
Get well soon!!!!!!
xoxo,
Polly

[seedoubleyou]

Katie,

This is FlakeyMatt I am so sorry that you are having such a tough time The doc recommendations you have been given are good ones and it would suit you best to get to one of these facilities that can offer more suitable treatment ASAP You have so many medical issues occuring at the moment that it really is going to take physicians who are experienced with all of your ailments in order to work out a proper course of action. It certainly sounds to me like you are edermic (I have been edermic on several occasions).

I can offer a number of things that may help with the symptoms:
*Lube lube lube keeping your skin moist will help
*Marie's suggestion to keep your feet elevated at night is a great one to help with the swelling in the day time put PRESSURE STOCKING on your legs once you have put on lubrication You can buy them at most drug stores or medical supply stores Believe me I had to do this a number of times and it really helps (and besides my legs looked GREAT in them :p -Just trying to make you laugh kiddo)
*KEEP YOUR SELF HYDRATED. B/c the fevers and the amount of heat you will radiate from your skin it is easy to become dehydrated

Okay I am usually relectant to suggest a medication to anyone BUT I would recommend you discuss SORIATANE with any physicians you do see. It helped me when I was edermic. The reason why I suggest this medication is b/c while it is systemic it is NOT immuno suppresant Of course, as far as I am aware none of the conditions you currently suffer preclude you from taking the medication.

Katie, WE ARE SENDING ALL THE BEST WISHES & PRAYERS we can your way.

I MEAN THIS if you wish to talk to me call my cell phone 973-632-2084


(((((((((U)))))))))

Matt

[shea lynne]

I haven't had to deal with this myself but I am on methotrxate and humia. It helps keep my skin calm. Please don't lie there and suffer. This stuff can be dangerouse and it does sound like you need soritane or something to get you well. I do know about MRSA. I use to work in a hospital and contracted it myself. I two had to take 2 antibiotics. Mine turned up in my urine but not in any where else yet. MRSA is serios and I wonder that you may need to be in the hospital. In any case you shoudn't have to suffer like this. My prayers are with you. I will say one right now! Tender Hugs to you. Please keep us posted! Lynne

[RichJ]

hi katie,
i hope you are doing better today. you need a break form all the problems you have with p stuff and i just wish you got one. my friend. i wish you the best. get well soon.

try and have a good day all

richard

[jennmkirby]

Katie,

I am praying for you and hoping you went to the hospital and that they're taking good care of you! Like Rich, I hope you get a break from this mess soon. You've been through a lot!

Jenn

[baldwin123]

I hope you have reached a doctor and are getting the care you need now... take care and know we are thinking of you!
Jen

[Photochick66]

Katie,

I am so sorry to read this. I don't have much to say that hasn't already been said. I hope you get better soon! && Try to keep us updated.

x0x
Dee

[Jillian1507]

Oh, how terrible.....go to the dr and see what they can do for you.....we are all thinking of you and keep us posted......

[makeitgoaway]

Katie:

I hope you are getting better. My thoughts are with you.

[bratsareus]

Katie, you're in my prayers.

[nesielheum]

Katie,
Hope you are feeling much better. You are in my prayers this weekend.

[kkellogg]

Any news?... how are you, Katie girl.

I hope you have gotten some relief.

Hang in there.

[ouchyk]

Katie was re-admitted to the hospital Tuesday :( , hopefully she will get enough to see a super specialist soon.

Keep those good thoughts coming, she can sure use them.

Karen

[mickels413]

Add me to the list of people praying for you.
I am praying that God will allow you some relief from all this physical pain, that you will be in contact with a doctor who knows what is going on and is attentive to your needs, that the nurses taking care of you are warm and comforting, and that you are in the best spirits as possible.

[mamaooch]

My thoughts and prayers are with you as well. I wish you a speedy recovery.


Take Care
Cindy

[jdgarwood]

I shared your post with my wife and both of us have been very concerned about you. Just thought that you'd like to know that we're thinking of you and hoping for some relief soon. Please keep us posted.

[RichJ]

hi katie,
i hope you are doing better. i wish you the best

i hope you are having a good night my friend

richard

[Brooks_kaylie]

Katie,
You are so in my prayers girl.
I know how scary it is to be in the hospital with an infection .
I was in the hospital this year.
You make sure to do everything the doctor says ok.
I hope you get better real soon.


kaylie

[Photochick66]

Any news??? I hope you are doing ok Katie. We were all thinking about you in Portland. Feel better soon.

x00x
Dee

[MrsSooners74]

Hi All,

First of all thank you all so much for your well wishes and prayers!! They have helped me so much cope with everything that has been happening in my life... and let me tell you, it has not been easy... In fact it was the scariest time I have ever gone through. I was in the hospital for a total of 10 days and they were absolutly wonderful to me.. I couldnt have asked or wished for better nurses or doctors. I had a horrible time when I was sent to Uconn to be admitted and much to my suprise and my dad's suprise they basically turned me away and sent me back to the hospital I was already at... That seemed like the longest and worst day of my life. I was on 2 different IV antibiotics lots of IV fluids, Heprin because I couldn't get out of bed and was on Morphin every 2 hours. I had never been in so much pain in my life. The doctors had 2 wound care specialists come and see me and their first reaction was that I looked like I had been in an awful fire.. and thats exactly how my body felt too. I had to make the very tough decision to go on a very high dose of Prednisone but right now that is the best decision that I ever made. Although now I am stuck on it for more then a month. within 24 hours of them starting it through my IV my body really calmed down and the oozing infection stopped weeping. The MRSA staph infection really attacked my whole body inside and out and I was in bad shape for while. I was in an isolation room because I was contagious so by the 12th hour of prednisone I was begging to come home because my body felt like I was bouncing off the walls. After begging and pleading with the doctor they agreed with me and set me up with a visiting nurse at home and I was able to give myself my needed IV meds in my own bed. I had a PICC line put in because I was going through an IV line a day and then my veins would just collapse as soon as the line was put in... I had the line removed on Tuesday morning and I am doing fine now... Im still on 3 different oral antibiotics, along with 80 mgs of Prednisone a day.. with 100 mgs of Atarax every 4 hours and pain medicine as needed...Considering where I was a week and a half ago... I am very grateful to be where I am at today. Every morning is a struggle until I get myself going but I just have to push myself to get up and just be happy that I am even here!!!! Thank you all so very much again for everything you all do for me... From the phone calls to the hospital, to the flowers sent, to the messages on here and the PM's it all means the world to me...... I will keep you all updated on where I am headed next as far as treatments but for now I am just taking it one day at a time... Love to you all!!!! xoxoxooxox

[Photochick66]

Katie,

Thanks for the update :) I am glad you are at home and doing better. I'm so sorry you had to go through that, sounds really hard. I watched my mom fight to get up every morning for a long time, she told me afterwards she did it for someone. I guess what I'm trying to say is think of someone you care deeply for, for my mom it was my dad & us kids. For you maybe it's Rob or your parents, or maybe someone on this forum.

Stay strong, and I hope you feel better soon. Much love, prayers & good thoughts being sent your way.

x0x
Dee

[MrsSooners74]

Aww dee.... you are such a sweetheart!!!!!!

There were many days that i had to do exactly what your mom did... Think of someone who I needed to get up for.... I have been so many peoples "ROCK to lean on" that it was my turn to lean on someone else for help! My family and Rob and wonderful friends really stepped in and gave me such strong support and love. My dad everyday would give me 2 hugs.... One for love and one for strength.... and it really worked!

[PJ66]

Katie,
I'm so happy you are feeling better. And you are so right, you have to take it one day at a time. Thanks for updating us. I have been thinking about you and praying for you.
xoxo,
Polly