My first run with cellulitis - such bullsh*t.

Nordy

I'm sorry. I am so mad. I have been sick with a viral infection, that I just haven't been able to completely kick. Yesterday I started feeling achey and having chills... figured it was just me trying to get over everything. This morning when I got out of the shower I noticed the dorsal side of my upper arm, elbow and into my forearm were hot, red, splotchy and streaking into my arm pit. I am so f*cking pissed right now. Frustrated. Angry. Sad. At the end of my rope. Headed to the MD's here in a minute to have labs drawn and hopefully start right on an antibiotic. I wish I could grow  a new arm because I would seriously just ask them to remove this one. I don't mean to be Debbie Downer, but seriously... BC with LE is the gift that just keeps on f*cking giving...

Marple

Nordy, I'm SO sorry.  I hope the Dr. is on his toes and you get this nipped in the bud.  Dangit!!!!  Sigh, I know what you mean about LE.  It sure does get tiresome.  And you aren't being a Debbie Downer.  It's all just so frustrating to deal with.  Good luck.

Nordy

Thanks Sharon... I am just frustrated to tears...

kira66715

Oh Nordy! This does stink so much. Thank goodness you know what it is, and will get the help you need immediately.

I can just feel your frustration and disappointment--one step forward and a step or so back, and it's just not fair on any level.

I'm traveling with three antibiotics, does that tell you how much faith I have in my body?

Get better soon, and somehow, if you can, give it the emotional response you'd give to the sinusitis that could have resulted from a bad virus. It's a weak spot in your immune system, and it was made vulnerable to the secondary infection. It will go away.

Hugs and anything else that will help.

Kira

AnneW

Dang, Nordy, that sucks!! Any clues on how it developed? LE is one of my biggest nightmares. With all the crazy stuff I do, it could happen so easily, even when I'm careful.

I wish there was some way to avoid this horrific complication.

Please rest and take care!!!

Hugs,

Anne

Springtime

Girl, that just totally SUX!!!! It just never ends. But I believe what Kira said, it WILL GO AWAY!!!

Let us know what the doc says!! And what they do to treat...

I recommend 2 weeks on a tropical island!!! 

Nordy

Thank you Kira... it is just hard to give it a played down response when I have tried so hard to keep everything in check... And you know on some level there is that feeling of guilt... I KNOW what to do... I KNOW all the precautions, contraindications... blah blah blah... I am just pissed. Really. And sad... but mostly so angry at myself... even though there is the part of me that KNOWS I did not cause this, nor was there likely anyway I could have stopped it... but still...

Nordy

Thank you Bev and Anne... I am just over here beating myself up... you know, I don't need anyone to do it for me... since I do that plenty on my own.

Kindergarten

Dearest Nordy, Oh, boy, I know exactly what you are going through.. I had a nasty case of cellulitis back in November, because of my age my gp put me in the hospital to have the intravenous antibiotics. I too, now carry preventative antibiotics any time I travel. I immediately went to my onc then and was referred to a wonderful LE therapist. Because of my great therapist and the  wonderful ladies here on this thread and their advice, I am hopefully staying ahead of this problem.Prayers are coming your way, I am so sorry that you have to deal with this. I am also doing reflexology on my feet twice a month, they say it is great for your immune system, so far so good. Kathy

Kindergarten

Again, Nordy, I forgot to say that, please don't feel guilty, you did nothing wrong. Unfortunately, this stuff happens, all we can do is try to stay ahead of this problem as best we can. This thread is wonderful with great info and advice. Good luck to you, oh, one more thing, my LE therapist told me to get off the caffeine(I am coffee junkie) and switch to green tea. I drink 3-5 cups of green tea daily and 10-12 glasses of water. Hope this helps. Love, Kathy

toomuch

Nordy - I don' have any words of wisdom. I just want to concur that cellulitis on top of LE does stink! Just know that we understand your frustration. I hope that the antibiotics knock the infection out quickly.

kira66715

Nordy, It's so hard not to react emotionally--this is a blow, to your body, your confidence--and the reality is that you're incredibly informed, do everything right and this lousy thing still happens.

Hard not to feel guilty, and angry.

Once, I took a yoga class, and the instructor told us to scan our bodies "without judgement": very hard for me to do, but a relief.

This is a horrible thing to have happen to you, and you are in no way to blame: LE is the gift that keeps giving.

Wishing this was far, far behind you. Please hug the puppy and realize that when you're sick you feel sick and tired and emotionally spent.

Even more hugs.

Kira

kcshreve

Nordy - I'm so sorry.  More frustration on top of frustration. Not your fault at all.  

 I've not had cellulitis, but I will be traveling for a couple weeks (to Mexico).  I had not thought of bringing antibiotics - and of course I should, I can see.  It's amazing how much we have to think of just managing LE.  Are there a couple of specific antibiotics which are commonly used with cellulitis?  I'm not sure how to navigate this, since I have to be de-sensitized to antibiotics by my allergist, since I'm allergic to them.  Geez!

Estepp

Nordy....... just saw this............. I am so sorry.... I feel your sorrow too... and ANGER! I also... would be so  pissed; So not right.... such a interruption for you in an already interrupted life ( BC already... right?)

I wish this was not happening to you....

Sorry!  GRRRRRRRRRRRRRRRRRRRRRRRR!!!!! 

Binney4

Nordy, hugs and prayers for a quick response to the antibiotics. Hope you're already resting well and feeling better. Sending you gentle, healing thoughts!
Binney

Nordy

Thank you everyone. It was not the best of days. I spent 3 hours in the doctor's office - labs, saw the PA, and then sat in the chemo lounge and had IV abx & fluids before I left there. Then it was off to the pharmacy to have the oral abx filled. I feel so blessed to have good neighbors, who took my youngest daughter for me, then picked up my other daughter from school... fed them and kept them entertained while I was gone for 4 and a half hours. My arm is a good cm larger everywhere and still red and hot, but at least the chills are gone, even though my temp is still up. I have strict orders that if anything gets worse over the weekend, I am to head straight to the ER. I love my onc... the PA was just going to send me off with an oral abx (she is new with his office and onc patients) - when she went to him to double check - he said, "Have you ever seen cellulitis in a patient with lymphedema. It is not pretty, it spreads rapidly and she needs a dose of IV abx before she leaves this office." I could kiss him. Anyway, I feel a bit better, but I have had LE for over 5 years and have always avoided this - I treat every little nick, cut, scrape, burn with topical abx and try to do everything right. I don't even have a wound to tell me where the infection got in... I can only blame it on a worn out immune system that has been fighting an URI for the last week and a half. Guess I had better have an abx on hand for the future... this sucks. When oh when, are they going to build some lymph nodes from stem cells in a petri dish and be able to place them in the axilla??? That is my hope for the future... am I crazy?!

Have I mentioned that I despise the month of April? April is just not a good month for me. I am going to somehow remove it from my calendar.

cookiegal

blechy blechy dumb cellulitis......I hate to tell you this but I was on the drugs for months.

Don't jog if you are on levaquin...btw...it can cause tendons to snap.....

It does seem so unfair...we don't get to ever really get better......

I saw a headline that called LE "cancer's dirty little secret"

Nordy

Dirty little secret. Isn't that the truth!

No - on Keflex this time around... there are very few families of abx that i can take - I am allergic to many... 

Kindergarten

Hey, Nordy, you are one brave and strong lady!!!!! I hope and pray that you never experience this again. I was 6 years out before I had my one and only case(so far) of cellutlitis. Let us both kick this to the curb!!!!! God bless you, Kathy

Marple

Nordy, I'm glad to see you were well taken care of and things were handled at home while you were gone.  (One less thing to worry about.)  You didn't do ANYTHING wrong to get cellulitis, it just seems to happen sometimes regardless of precautions.  Hopefully yours heals quickly and causes you no more grief.  Gentle hugs.

mrsnjband

Hey Nordy,

I feel your pain.  I just had my second acute case of cellulitus.  I had an URI right before the cellulitus flared.  I do have an open wound but I also think it flared becuse they wouldn't give me an antibiotice when I got the URI.  It just plain sucks.  I had the first go round  for 5 months and  I ended up in the hospital in November.  I knew if I went to the er this time they would admit me so I waited until the next day to get the oral antibiotic.  Between that and a topicsl antibiotic it is clearing up quickly. 

I have a question, did you go to your chemo onco? I am asuming you did since you said you were in the infusion room.  When I had this the first time my onco doctor didn't say anything about the rash I had being cellulitus.  I am really p!ssed me off.  Does any one really care about our LE conditions, I haven't found one yet. 

I'm right their with you ! NU

kira66715

Nordy, hope you're feeling much better today. I'd blame the URI. I'm so glad you got the dose of IV antibiotics to kick start the healing.

Kira

moogie

NORDY: I am right there with you and know how frustrating this is. I would not admit it was cellulitis until I got the chills. Then I screamed and took the meds after the triage nurse at the LE clinic spoke words of wisdom: It's here and you need to deal with it.

I got over my first bout several weeks ago and drive myself nuts asking: Where did this come from? I look like a military medic if you peeked into my purse! Never let a cut go untreated. Alcohol swabs, ointment, bandages of all sizes, sanitizer.....

When I saw my LE Dr. for followup she told me with LE, most of the time there is no knowing----just a plan for when it happens. It could have been a nick in my gum when brushing my teeth or a microabrasion someplace else on my body, etc... I let myself off the hook, and you should too.

Have the antibiotic RX on hand at all times and a few pills in your purse. I carry a Keflex with me in case I see something start, and TAKE IT WHEN YOU SEE: redness, hotness, increase in size, chills. Denial is usually where I go when I see a red spot, but quick action is the best defense.

 Best wishes for a speedy recovery and know we are all pulling for you, understand the infernal frustration and helpless feeling, wish that a martini,an hors d'oeuvre tray,and bossa nova came with the antibiotic drip!

Anonymous

So sorry you are dealing with this, Nordy. Glad your onc got you the right treatment asap. I hope you are feeling better soon. I swear I could tell I was on the cusp of cellulitis when I developed a case of pneumonia last year. I was flaring big time. Please don't be hard on yourself - everyone gets sick and our immune systems just can't handle things quite like they used to. I definitely would blame the URI.

TifJ

Nordy- so sorry to hear you are going through this. I do not have lymphedema, but I got cellulitis in my port catheter. I had the port removed then 12 days of IV antibiotics (rosephen and vancamycin) then 11 days of oral Keflex. On day 11 I developed an all over itchy rash- it was an allergic reaction to the Keflex. On top of the infection, they left the port removal incision open (had to pack it every other day for 6 weeks) so it wouldn't get infected. I could barely move my arm for about 7 weeks due to pain- now I may have a tear in my deltoid muscle from overuse! Off to the orthopedic surgeon next week to see what to do!! I am 13 weeks PFC and feel like everything that has happened since chemo has been more of a pain in my butt than chemo itself!!

Hope the nastiness clears up quickly!!

unlimited

I hear ya - on this crazy Cellulitis crap ----   I had it again this past December 2010 ( my first time with this was Fall 2008).  This time - this young ER MD thought I was nuts that this is celluilits brewing.  I assured it was - for me it always starts with hangnails. This time I had 3 - and few days prior to the admission had the thumb and first two fingers bandaged in efforts to not get cellulitis.

Some MDs at least the two that encountered my arm cellulitis in 2008, and Dec 2010 think the red streaking should start at the point of infection entry. For me it is always the underside of my lower arm because that is usually where I am full with lymph fluid.  Long story short in the Dec 2010 case - after 1.5 hrs on IV antibiotics - sure enough the young ER MD saw firts hand how the redness was creeping outside of his blue markings. Heck by that night after being in Observation then admitted - it reached all the way to my arm pit.  Saturday admitted.. released Tuesday. Then of course it the crazy wait to then start OT MLD appts. Luckily - I had enough of the skill to start working my arm since my first appt wasn't to be til January 5 ( released from hsp Dec 14)..

grrrrrrrrrrrrrr  - well this time I was seen by another LE OT therapist .. she was great - and also finally had me fitted for my first ever Solaris - TRIBUTE sleeve  --  gosh  How I Love this sleeve - best thing ever for my arm. I wear it nightly.  Hopefully, with this added garment - will prevent further inpatient hsp stays.

I stll haven't order the LEBED video - I must get this on my " to-do list'     

palaminoridesagain

Nordy I am sorry you are having to go through this. It gets very frustrating because with BC things are good, then bad.  Cellulitis is a serious infection and I am  hoping they have you on the right anitbiotic. 

Nicki

Nicole112

Nordy,

Just chiming in here so you do not feel alone... add me to the "cellulitis club!" Not currently, but definitely had my past experiences... seriously, I feel like such a freak of nature, HUGE germaphobe ever since my experience!

You are smart in treating this so aggressively so fast, keep us posted!

Sending you warm wishes (well cool ones I guess, ha ha!) And, you are not alone!

Nicole

Randi64

Hi Nordy, I just saw your post. I am so sorry this happened to you! I hope you are feeling better today! Hugs to you,Randi

Nordy

Hi Everybody! Thank you so much for your support and well wishes. The streaking into my axilla is gone today... wish the redness and heat was too, but it continues to linger, as does the pain across my chest. Overall I feel better, but still coughing with this URI and feeling a bit cruddy, but I am glad the fever and chills are gone.

Norma June - Yes, I did go to my medical oncologist. You know I have a PCP, but I don't really love her office and I have moved since I initially saw her so now they are clear across town. Plus, I figure the one person that actually may care about me the most (second only to my local PS) and that I have a good MD-patient relationship with is my medical onc. And he isn't even the one that treated me when I had cancer! We just hit it off for some reason (maybe it is a biking thing). I am very sorry that your med onc didn't pick up on your rash being cellulitis. Sometimes it takes some "shopping" to find the right fit for your docs. I had a pretty crappy med onc in Texas - I went to one appt, left in tears and immediately called my surgical onc to ask for a referral elsewhere. When his secretary called to schedule a follow up, I told her under no circumstances would I see that pompous *ss again and told her the exact reasons why. She was very sympathetic and did not argue... so that says a lot!

One thing I think is important for everyone to remember is that as a patient you have rights. This is so important that most, if not all, hospitals have a written Patient Bill of Rights and should give you a copy upon admission. We need to remember that we are not only patients, but consumers... if you don't like the food or service at one restaurant, you go someplace else. It should be the same with your healthcare. I know some women may be limited by either insurance or location, but for the most part, if you are able, you should have choices and if you are not being treated well, you need to keep looking. I think sometimes patients feel boxed in because maybe they were referred to one doctor by their PCP and feel guilty or afraid to go elsewhere. DON'T! You are your own best advocate!!! Sorry, I will get off my soapbox now... 

inspiewriter

Sorry you had to go through all that!