Pre and Post Antibiotic picture

On the Google support group, many have expressed how antibiotics helped to clear them up for a few weeks.  I am on day 4 of antibiotics and doing OK.  I am back to my basic level of pain, itching, and redness.  The redness on my arms is actually reduced - but my face and neck and legs remain the same.  I am still miserable and have to wear my ice pack 24/7 around my neck, but I am not balled up on the floor crying from the pain.  I am not expecting miracles with the antibiotics - just wanted relief from that terrible increase in pain - and I got that relief, so I am happy!

One other thing I have decided to try based on another warrior's advice is emu oil.  Apparently it has many healing properties and is used often for burns.  Since our skin is often likened to burn victims due to the severe damage of the many layers of skin, I thought I would give this a try.  My supply came in the mail yesterday so I only started it last night.  According to pictures provided by the company, some of the burn victims see significant changes by 6-7 days.  So I will give this a week and then post pictures.  I am only trying this on a few areas given it stings a bit and I want to make sure my skin tolerates it and does not react badly.

My right arm during my severe pain this weekend.

Right arm last night on day 3 of antibiotics.

Face this weekend

Face this morning - still red and tight but little to no pain.  

The use of antibiotics during TSW

Well I only had to debate for a few hours longer on the antibiotic use.  2 days ago when I wrote about debating whether or not to use the antibiotic script my doctor gave me months ago, I didn't need long to make a decision.  I went into the tub and the pain was even worse!  After getting out of the tub, I was literally on my hands and knees because of the pain - I was crying so hard.  I had an image in my head of the Salem witch trials - when they burned women at the stake while still alive.  That is how I felt. I felt as if my skin was literally in a gulf of flames.  I have never had this much pain all over my skin before.  So I bowed my head and prayed.  I truly felt God telling me to go get that prescription filled.  He gave me just enough energy to get the kids in the car and drive to the store.  The pharmacist took one look at me and I kid you not, my script was ready in less than 5 minutes.  Not sure if he was more sorry for me or more scared of catching something contagious!  I really didn't care - I was just glad to get back home and pop a pill!

Here is where things got interesting - within 2 hours my pain was nearly gone and I had significantly less itching.  Even when I get a 4-5 day break, my pain and itching go down over the course of a day, never in 2 hours.  I was finally able to touch my body without wanting to scream.  I was able to walk around without being hunched over in pain.  It was truly a blessed relief!!  I went to work yesterday and tolerated it very well.  I itched from time to time, but no where as bad as last Friday at work.  This morning I woke up and was able to put my hair up in a bun, raising my arms over my head without severe pain.  It was so wonderful!!  My skin is still red and itchy and sore - but back to what I am used to.

So are antibiotics something we all need during TSW?   I do not believe so - even Dr. Rap says it is rare for someone to get infected during TSW.  But given I work in a busy Emergency Room and am exposed to high levels of bacteria, I knew I was at high risk - hence why I only went back once a week and took 3 whole months off.  Being a nurse, even I was not able to be sure it was an infection - but the severe increase in pain and swelling and infected looking sores - well I knew there was something else going on.  I will be taking higher doses of probiotics when this antibiotic course is over.  And I told work that I will not be able to work for a while unless they kept me in triage only where I see a lot of people, but only ask questions - I have very little physical contact with anyone.  They are so short staffed they agreed.  So I will continue to work once a week - but I will not be running around like crazy and not being exposed as much as if I was working in the back with all the patients.  I do not like asking for "special treatment" but I know that I cannot risk getting another infection.

I will be posting a few pictures in a day or so to show the significant difference in my skin.  I am still due for an increase in flare during my PMS time - I no longer believe this "flare" had anything to do with PMS like I initially thought.  So we will see how I handle it and then I can possibly look forward to my 4-5 day break in the pain, redness, and itching during my post period break I typically get! :)

Debating....

I am currently still in a rage - I call my major flares within my constant flare a RAGE - because that is what it feels like - like my body is a hot bloody rage over something!  It started on Friday while at work - typically they last 3-5 days and are centered around my PMS time.  I am now on day 4 and praying this ends soon!  I keep thinking it can't get any worse - but it does.  My legs are now a raw bleeding mess - waking up scratching them and my arms to pieces.  My neck was doing better, but went back to a red hot mess with this rage.  I can find no relief except in my music.  Even that is on/off depending on how truly bad I am feeling at any given moment.  Have cried every day since Friday.  Can't seem to deal with this right now.  I keep praying and praying for relief.

Anyway here is my debate - I am terrified of this getting infected.  After tomorrow, I will not be going back to work for awhile until my skin clears some.  I come into too many germs at work and I am wondering if this latest rage is from my body fighting an infection.  I do not have a fever, but it still concerns me as I was not able to keep from scratching at work.  I have a prescription for an antibiotic from my derm - he told me to use it whenever I felt I was overloaded with staph on my skin.  I don't know for sure if my skin is infected or not - I don't have all the tell tale signs, but I have a few - which are part of TSW - so it is hard to tell.  All I know is the swelling on my arms is so much worse - I can barely get my loose fitting shirts on because they are too tight on my arms.  Bending my arms is painful because of all the swelling.  I know that this is part of TSW, but again,I am also being exposed to a significantly large number of germs at work.

So I will ponder this some more and make a decision by tomorrow.  Not happy about taking antibiotics, but then again if it helps even a little, then it will be worth it.

Keeping it Real....

I wish I could say I am doing better or having a relatively decent day, but that is not the case.  I had a severe increase in my flare during work on Friday.  Yesterday I cried all day and my skin felt like it was on fire!  Felt the same most of today.  I really tore my skin up - didn't take much - just rubbing it will slough skin off.  It is a hot raging mess!  Thought it may be due to PMS hormones but I am not due for another 9 days and I have no other signs of my PMS.  Which means in a few days I will flare just as bad again I am afraid.  I took tylenol and ibuprofen during the day today because I absolutely needed to get to the store and I knew I could not handle it without something for the pain.  Not sure if it is still working or the flare is going down to its normal state of flaring, but right this second I am OK.  Not great, not good, but not horrible like earlier today and yesterday.  I thought my neck was doing better - and it was -but with this latest flare in a flare, my neck raged as well - so not happy about that.

But despite all the pain and the crying and frustration, I did manage to keep things moving here at home - I NEED to continue to try to get life back in some sort of order.  It makes me feel better over all.  So I exercised on my new elliptical - twice yesterday for 5 and 6 minutes.  Today I did a whopping 10 minutes at once.  My heart rate was 132 at the 3 minute mark - so much better than 160 - so I did the extra time.  It felt good despite the pain all over my skin. It also helps that I subscribed to Rhapsody and downloaded a bunch of my favorite "rocking it out" tunes.  The music helps keep my mind somewhere else besides the pain.  I continue with my 24/7 ice packs around my neck.  They are my life saver!  Couldn't have made it this far through TSW without them!

So here are just a few pics - not much different from other pics, but like I said - I am keeping this real and this is where I am right now at 4.5 months:

Face is red, raw, and painful

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Left ear has been weeping for 3 days now

The top half of my thumb is all red and excoriated

Left arm red, swollen, painful, and tight feeling

Right arm feeling the same as the left - really tore it up bad

Red all over chest neck and face

Great attitude went out the window!!!

Last night after I got home from work, I broke down - more internally than externally.  It was a very crazy busy day at work - had intense itching all day and my skin just burned and burned.  I wanted to ask to leave early, but there was no way because the ER was jammed to the gills.  I got home and immediately went into the tub - no relief.  I was able to sleep but woke up with ooze everywhere and my shirt stuck to my skin in tons of places.  I'm not sure if my intense increase of my flare is work related or just coincidental - but this is my 5th shift back to work in the last 5 weeks and each time I go through the same thing - worsening itch and lots of oozing.  I may just have to take another 1-2 months off because I cannot handle this physically or mentally.  It is after noon now and I am still oozing all over my arms, my back and my chest. 

Sorry to be so down, but this TSW really has a mind of its own and when it shows its worst side, it can bring one to their knees.  I am trying to see something positive in life today....not working for me right now.  :(

There is one thing that is good - hubby put together our new elliptical machine 2 days ago and worked out for all of 5 minutes both days - today I WILL get on it for 5 minutes.  My heart rate went up to 160 the first time and 150 the second day - today I will see how it goes.  Once it only goes up to 120- 130, then I will start using the arm levers and increase to maybe 7 minutes.  My heart has really taken a beating being so inactive the last 4.5 months.  I tried walking outside, but regardless of the temperature, the air on my skin burned after a few minutes.  I would try to cover it up, but it was hard covering my face.  My goal is to get my cardiovascular system back into shape.  I cannot afford to let my body get sick in other areas. 

I have stopped by a lot of blogs today - unfortunately I just do not have the mental energy to comment - very sorry to all my TSW friends out there.  I also still need to update my blog list.  If you do not see your blog on my list, please comment with your link and I will do my best to get them up by tomorrow.  I am trying to compile as many as possible - finding links on other's blogs.  But right now I just need to mentally step away for today.  I need to get to my tub, do my skin routine, take my vitamins, and get on my elliptical.  Then I need to get the kids started on their school work.  I let them play outside this morning before it got too hot outside. 

Here's hoping and praying you are all having a good skin day!!!

Happy 4th of July!! And "Stop scratching!"

Today is a good day to celebrate - not only is it the 4th of July, but it also marks my 20th week of TSW.  I cannot believe I made it this far!!  I once read on someone's blog how they used to focus on each day and sometimes each hour in the beginning but after a few months life seemed marked by weeks as life was getting easier.  While I am excited to have made it 20 weeks, I still take each day as it comes - I still mark life by the days - and some days by the hour.  Anything can set me off into an itching frenzy - hot weather, kids acting up, visiting family, and work.  We went to visit family last weekend but only made it to 2 houses.  We never made it the additional 1.5 hours to my aunt's and grandfather's house as it was too much for me - brought my ice packs but the hotel we normally stayed in was booked and the hotel room we did get did not have a fridge.  All I could do was dream of getting home and sitting all day with my ice pack on!  Tomorrow I go to work for my one shift a week - can't wear my ice pack while working as my job is too physically demanding and I would look weird walking around with it on.  Hoping I am not too itchy and not oozing too bad while at work.

Speaking of work, I dread the phrase I hear too often from my friendly co-workers: "Stop scratching!".  They mean well and are polite about it, but it is embarrassing.  I am embarrassed that I scratch without noticing - that I have blood under my finger nails at times.  I am mortified actually, but those of us with TSW know all too well that we can scratch and not even know we are doing it.  It becomes a part of who we are.  My close friends know this and they just want to call my attention to it so I stop - I risk too much going to work at this point.  I work as a nurse in the Emergency Department.  The last time I worked I was out in triage - thankful for that as I do not have to run around as much there compared to taking a patient assignment.  However one of the people I was triaging came in and said he thought he had cellulitus again on his leg - he then proceeded to tell me he had cellulitus a few years back on the same leg and it turned out to be flesh eating bacteria causing it!  WHAT???? I just about freaked!  I of all people do not need flesh eating bacteria on my open skin!  I am vigilant about washing my hands and trying so hard not to touch my skin while at work.  But it can be very hard!  While I probably should not be working yet, I also need to get my life back on track.  I need to give hubby a break from him working 60 hours a week - if I work one day a week, then he only has to work 48 hours.  He of course prefers I stay home still, but I still feel strongly about pushing myself a little to get back to a normal life.  I now have routines - with eating, vitamins, bathing, and even sleeping 6-7 hours each night.  I know it is time I pushed myself to get back to work.  I will not go back full time until at least my arms and neck clear up completely.  But I really need to do something - even if it is only one day a week.

As far as the rest of life goes, I am getting more and more stuff done around the house.  Dishes, cooking, shopping, and putting away the laundry are all things I am accomplishing.  A far cry from the first few months of doing absolutely nothing except supervising the children!  And I am more of the mom I want to be!  We are back to their schooling (I home school my 3 kids).  I went through all their books and found where we need some catching up.  We will be doing school throughout the summer, but then they will be all caught up for the most part.  Our son is behind - but he has been from the beginning - a slight developmental delay I think.  Overall I am doing more with them - I am still "checked out to lunch" some days when the pain is particularly bad - like yesterday.  One of our daughters decided she was mad about having to do extra school work so she poked a hole in her air mattress (the kids are on air mattresses until we get more furniture after we move).   I guess if I was paying her more attention, this would not have happened.  But she actually came and told me what she did and apologized.  Luckily duct tape fixes everything!  :)

Anyway, hope everyone is having a good day!!! :)

Amazing people!!!

Is there someone who has come into your life at just the right moment?  Someone who does something so unexpected and kind that it brings you to tears?  Well, today was one of those days.  Let me explain....

We do not have a washer and dryer - we have plans to move to another state as soon as I am well enough and we just decided not to buy a washer and dryer until after we move.  So we have been taking our laundry to a local laundromat.  For awhile we did our own laundry - it would take a few hours once a week - nothing bad.  But before I learned about TSW, hubby and I were working some over time so we paid to have our laundry done - they charge $1 per pound - and we get it all nicely folded and organized.  The lady who does it even puts all the socks together!  After we stopped the over time, we kept having them do the laundry as it was so convenient and not expensive.  Anyway - I went to pick up the laundry today - the 2 owners were both there - Bill and Anna.  Anna said she felt horrible seeing me yesterday when I dropped the laundry off because my skin was so bad and I was constantly itching.  She told Bill who came up to me offering some home made cream he had made for his psoriasis.  I declined politely stating I have tried everything.  Well he insisted - gave me a tub for free.  He says it has a special ingredient from Spain that he says is sacred.  I thought I would give it a try - why not.  Then he proceeds to tell me he contacted his church and explained my condition he did this without even seeing me....just went on what Anna told him.  He said I will be in a prayer chain for the next 90 days and they are holding a special mass in my name on Saturday.  I was deeply humbled and brought to tears.  These are such kind and wonderful people!  I have not seen them in 3 months as I have been basically home bound because of TSW - hubby has been dropping off the laundry every week all these months.  But before I would talk to them - never realizing how spiritual they were.  Today I felt a deep feeling of gratitude and thankfulness for these people who went out of their way to help me without me asking.

Today I am very very itchy!!  More so than normal.  My arms continue to be swollen and red and oozing.  My face seems to have less redness and swelling - but super itchy as well.  My legs continue to get worse with the spreading flare. My back continues to spread as well and is very painful in certain areas.  Here are a few pics - compared to previous pics, I look better, but in real life I don't see any difference - I think my camera is very finicky depending on the light so some pictures make me look more red than others when in reality the redness is the same.

Overall I say my neck and face are looking much better - my face is no where near as dry - but then again I started putting vaseline on it again and it now seems t o tolerate it better than it did before.