Wednesday, July 31, 2013

What a real break is for me!

I know some people have a break from their flaring and their skin looks really good - almost normal.  For me, my break is still great - but great in my terms.  I am still having issues behind my knees and my upper thighs.  My hands and wrists are still red and the skin there feels very rough.  I also have a rough patch on my lower back.  The itching has not abated - I still itch 24/7 but it is thankfully not that bone-deep itch that drove me crazy a month ago.  This is by no means a complaint - it is only to let other TSW sufferers know that a break may not be a 100% complete break from the symptoms.  It may just be a time when things calm down enough where you do not have to moisturize all the time, when you can move without significant pain, and when your skin doesn't tear the second you scratch it.  Below are some pictures I took yesterday after yet another shower!!   I so miss taking a shower!


A little patchy here and there but nothing bad at all!


My left arm where it was really bad for all 5 months!  It is now healing nicely with a few patches still aggravated at the elbow.


Back of my neck with sores healing nicely


Left arm slightly pink and dry - no big deal!  


Right arm more dry and patchy than left arm, but not bothersome - more like a bit annoying at times.  


This is a bit bleary but my left hand still doing much better with the Emu oil.


Behind my knees are back to swollen, red, and painful - but truly the only real flared area on my body.  


My face is dry - but not like it has been.  Spot on right cheek is nearly all healed.  

Tuesday, July 30, 2013

Let's talk about s*x!

Ahhhhh, a hot topic for sure!  I think it is important to touch on for us adults going through TSW, who are married or involved in a serious relationship.  Getting physical is the often the last thing on our minds - there is too much pain, burning, itching, and low self esteem to even think about getting in the sack!  But for our significant others, they are struggling as well.  They may not physically be in pain, but they often feel a sense of lack of control over what we are dealing with.  They want to help us feel better.  They want to fix this so we can all go on with life.  And they are missing us - who we were before TSW - the emotional AND physical aspects of us.  They watch us struggle and they don't know what to say or do.

What I do know is their needs are still the same, even though our needs have changed dramatically.  For me, I have learned to meet my husband half way.  He does his ultra best to be understanding that I have not been in the mood for the last 5 months (except for a few sporadic times).  And I do my best to understand that his needs have not changed.  It still amazes me that he wants me even when I am wrapped in vaseline, old clothes, an ice pack, and my hair in disarray.  Once I got past the low self esteem aspect, I started getting creative.  Even during my most painful times, I realized I could still make him happy with only using my hand and a bunch of dirty talk!  :)  Once I started making him happy more often, he seemed to be less stressed and less worried overall.

It is not easy by any means.  During the hardest times, we are often too wrapped up in our pain and suffering to think about anyone else.  We become very selfish - not on purpose, but for basic survival!  I'm not a counselor, and I'm not here to tell anyone what to do in their own relationships.  I am here to say that I have come to realize that by making my husband happy, I myself have become happier, less stressed, and more importantly, less worried about our marriage during this state of crisis.

Monday, July 29, 2013

Still Doing Well!!!

Today is Day 4 of a much needed reprieve from the redness, weeping, swelling, and pain.  I am very itchy still - but it is a dry itch and my skin is strong - so when I do scratch, there is no tearing of the skin.  My skin is nearly sealed over!  I have open areas still on my wrists - but those are starting to heal over.  The sores on my legs are almost all nearly healed over - never seen them heal so quickly - and all of them at once!  This by far my best time ever since starting TSW.  I cannot tell you all how wonderful it is to get such a break - and one that was not expected!  I will get red a few times throughout the day - but mostly I am a slight pink color - I can tell by looking at my wrists where the redness would stop suddenly at my hands.  There is still a noticeable line - but the color is so much better!

I have also stopped with the cold chills.  I had them near constant for the first 4 months.  Last month it came and went throughout each day after I started sweating the week I started exercising.  I have been sweating on/off through the day now - not pouring sweat, but definitely getting hot and sweaty for no reason. I sweat normally while exercising now.

I know I am no where near healed - my skin still stays white for a very long time after pressing on it - showing I still have significant capillary damage.  But to have this break without having a massive flare on my face or scalp thus far is a sign of hope for me.  I did have flaring on my face throughout this whole time, but it was mild in comparison to the rest of my body and what I have experienced in the past.  I did lose a lot of hair the past week or two - large amounts coming out in the shower this week.  Tons of hair on my hairbrush.  My hairline is very thinned out - this happened during my first sort of withdrawal 7 years ago.  But my hair did grow back thicker - so I am hoping it does the same withing the next year or two.

I am still planning on not working for the next month - going to focus on taking care of me with all the energy I have.  Hubby was right - I became significantly more fatigued after returning to work one day a week.  Obviously my adrenals are not well enough to handle the large amount of stress I deal with at work.  I worked my last shift on Saturday and was out all day yesterday.  Could barely stay awake to eat dinner.  Didn't have any energy to take my vitamins or do anything.  That level of fatigue is just too much.  I have been feeling guilty about hubby working 60 hours a week and really wanted to be able to go back to work, but if I go backwards in my healing because of stressing my adrenals, then it will take me that much longer to get back to work full time.

Well off to see how everyone else is doing!

Friday, July 26, 2013

A new hobby I obtained during TSW

It's funny when I think about it - my new hobby is writing.  I of course started this blog about 4 months into TSW.  I wanted to write about TSW when I first threw away my creams.  I even started a few blogs, but then erased them the same day.  In the beginning I was just so emotional over finding out about TSW and dealing with the onslaught of symptoms.  I also went through having to decide to take time off of work and how we were going to survive financially.  Whenever I started writing about my experience with TSW, I would break down.  For some reason it was just too much.  So I started writing about other things and I found this to be therapeutic.  I did write a few articles on CNN iReport about TSW and enjoyed getting the word out that way.  Unfortunately it did not get the attention I wanted it to because I feel so passionately about getting this information out there. 

What I found funny was the article that I wrote about guns that got way more attention than I ever imagined.  It is funny because I was having a frustrating TSW day and took out that frustration in writing about gun control.  I ended up with my article as a byline on CNN.com, a video on me and my family made by the NRA, and giving a speech in PA.  The video was hard to do because my skin was burning that whole day.  Luckily the lighting actually lightened my skin so I looked a normal skin tone and not as red as I really was.  I have done a few more iReports - none with any attention and that is fine by me - I just enjoy writing more than I ever thought I would! Writing this blog over the past 2 months has become more therapeutic each and every day.  But I find it refreshing to write about something else besides my skin!  :)  You can see my articles here:  http://ireport.cnn.com/people/HealingMe1?viewingAsOthers=true

I am hoping to write another article about TSW once I am healed with before/after pics.  I want to try to get this out there as much as possible.  :)

Thursday, July 25, 2013

My first AWESOME skin day since starting TSW!!

By far without a doubt, today was my first awesome skin day since stopping the topical steroids!!!  5 months of a near continuous flare with only a few days of a mild break have worn me down!  Yesterday I noticed the redness and swelling were down - still itchy though.  It was similar to the few days of a mild break I get after each period.  Then today I woke to my skin feeling slightly tight and very dry, but great overall!  Behind my knees were still painful, and so were my wrists (inside of my left wrist is still bad as I only put the emu oil on the top of the hand/wrist, not the inside).  My skin felt so amazing I even took a shower!!  It was refreshing and wonderful!  Only problem is I cannot seem to wake up!  I slept til 11 am and forced myself to get up.  Ran a few errands (the kids need to eat on a daily basis so going to the store twice a week is a requirement!).  Came home and fell asleep for 2 hours!  I woke up at 7pm and barely had the energy to make pasta for dinner (another cheat meal).  If there was a pizza place that delivered here out in the country, it would have been a pizza night!  Now I just have to find the energy to do the dishes!  But for now I will take the fatigue if it means better skin!  Another great thing - over 24 hours with no ice pack!!!  I slept my first night with no ice around my neck!!  I have to prepare mentally for my flare to resume in a day or so - it would be nice if I got a nice long break from this, but I have learned to expect the worst and hope for the best.  It helps keep me sane.  So for now I am enjoying this reprieve and am anticipating my flare to return tomorrow.


Left arm is feeling great!!!


Right arm still agitated in the elbow area, but not bad at all.


Right wrist/hand still painful


The inside of my left wrist is pretty painful still - can't spray the emu oil on such broken skin or it burns really bad - top of the hand still looks much better and still using the emu oil there.  


Behind right knee is so much better - still painful and agitated, but able to move with some vaseline.  Swelling is way down. 


Face and neck much better - no more oozing on chin or upper lip.  Still dry and have some weird dimpled red spot there on my cheek - but otherwise much better!



Right side of neck has a few problems, but nothing that a little vaseline doesn't fix!  A little upset about the recent hair loss - tons and tons of hair all of a sudden coming out the past week - washed my hair today in the shower (and not the sink like I typically have to do) and the hair clogged the drain.  It's also more dry than normal.  Just going through stages I guess.  I lost a severe amount of hair during my first TSW - my hairline was significantly more bare than in this picture.  Hopefully it does not get that bad again!  

Wednesday, July 24, 2013

What it means to eat healthy....

There is a lot of information out there on what it means to eat healthy.  Organic vs Paleo vs Vegetarian vs Atkins.  Well you get the idea.  What's right and what's wrong?  I have spent the last 5-6 years studying this and trying so many different things!  Milk was bad, so we switched to almond milk.  Almond milk was bad because of the sugar content, so no milk at all.  Organic cereal and organic macaroni and cheese had to be good for you since it was organic right?  What about that organic whole wheat bread?  Well, basically it comes down to what is natural and what is not.  Are the ingredients in the whole wheat bread and organic cereal all natural?  Nope!  The cereal is heated to the point of denaturalization.  Basically heat kills all natural vitamins and minerals - hence why the milk and orange juice and cereal at the store is fortified with vitamins!  But those fortified vitamins are chemical vitamins - not vitamins in their natural state.  Milk is heated (pasteurized) for your protection or so they say.  Ever wonder why so many people are lactose intolerant?  It's because the enzymes in raw milk are killed off - those enzymes combine with certain enzymes in your body to create lactase that breaks down the lactose.  Most people intolerant to lactose can tolerate raw milk with no problems.  Only a few people have a true allergy to the milk itself. 

Basically - here is how I see it - any food that is in it's natural form or created by things from nature are healthy for you.  So sauerkraut is good because it is cabbage that is soaked in water and whey (all natural things).  Butter is good when made directly from raw cream.  Butter from the store is pasteurized and sometimes chemically enhanced - therefore not good.  Oatmeal from the store is not good - oats soaked in water and whey overnight and slow cooked is really good for you!  I could go on and on! But the bottom line is when we put chemicals in our body on a daily basis, the body has a hard time getting rid of toxins already stored up in the body (like steroids) - it will still heal, but in my opinion, it will take much longer.  Eating truly healthy allows your body to process the high toxic load it is already carrying without adding to that load. 

I still cheat on out natural way of eating - there are days when I just can't go through the process of cooking!  We ordered pizza twice last month!  But overall we as a family decided to make an effort to eat as natural as possible just for our overall states of health.  And going through TSW, I feel it is crucial for me to eat as natural as possible to free up energy for my body to fight the toxins it is already dealing with. 

For more information on how to eat the all natural way you can visit:  http://www.westonaprice.org/

You can also look into "The Maker's Diet" by Jordan Rubin - eating the way God intended. 

Tuesday, July 23, 2013

My Experience With Emu Oil So Far

I had read somewhere that emu oil was very beneficial for healing - especially burns - so I thought I would give it a try since our skin is likened to burn victims' skin.  I bought mine from a place called Montana Emu Ranch - It has other things in it (essential oils) - it's called Emurgent Oil.  Their before and after pictures of burns are amazing.  I used to work in a burn unit, so if their pictures are true and not photo-shopped, then this is some amazing stuff!!!  I have been using mine for about 2 weeks - only using it on my left hand/wrist area.  I wanted to be able to do a comparison in a few weeks and here it is:


I do not have a "before" picture of my hands in the same position - but both my wrists/hands have looked identical with regards to the edges of the redness and severity of the redness.  This shows just how less red my left hand/wrist is.  The texture is about the same - rough - but I personally cannot believe the difference!  I will continue using it just on my left wrist/hand area for another 2 weeks.  I think a 1 month trial is good.  I will post another picture in 2 weeks and if the left hand improves even more, I will be using this all over my body!

Monday, July 22, 2013

Responding to a few comments!

First of all - a HUGE THANK YOU to all those reading my blog!  I initially started this to chronicle my journey - my sister inadvertently gave me the idea when she told me I should journal every day about my symptoms so I could go back to see my progress - especially since progress can be so sloooooowwwww during TSW!  I was going to start a personal journal (the pen and paper type), but after reading other people's blogs and REALLY looking forward to their posts, I decided to blog about this TSW thing to bring information and maybe encouragement to others going through the same thing.  I really liked Louise's blog - she blogged nearly daily for over a year!  I would go back in her posts to say the 3rd or 4th month marks to see what she was going through at that point while I was in the thick of it.  We are all going through this differently - but will have many similar symptoms and presentations.  So it was helpful to see where she was at a certain point.  In this I would read how she was having a bad day or a good day - these helped me to realize that all my ups and downs during this is NORMAL!   And sooooo many of us feel anything but normal - so knowing someone was going through similar things is a lifesaver during some of the darkest days! 

Anyway - today I received these 2 comments:

Lisa wrote:

HI Tracy!
hang in there. After the spreading comes the healing.
your blogging almost daily and exercising at the same time is so crazy! you are heroooo.

Miss Kitty wrote:

Blimey, I can't believe you're doing so much (including exercise!) with such severe symptoms! I just sat around a lot eating ready meals... I officially pronounce you hardcore. Fact. xxx

You ladies are the best!!! So yes, I am blogging almost every day - first I have the time given I am not working that much!  Second, I want to give others a guide to this whole TSW thing!  I know we all have different symptoms and times and presentations, but knowing someone else went through hell will help someone else going through hell to get through one more day.  I did not go to the forum for over a month because of my severe depression - but I did read blogs!  I didn't comment either - just lurked around.  But those blogs helped me keep my head above water on the really really bad days!  I cried at least 4-5 times each week - sometimes crying multiple times in a day.  Months 2-4 were beyond awful!  Month 5 was worse physically but significantly better emotionally! 

As for the exercise - well I know how important it is to keep the body moving - especially for the lymph system.  But it was my heart that made me start exercising.  I still cannot tolerate the outdoors, so I had to get something to do inside - and something that could be low intensity or high intensity.  About a month ago I noticed my heart rate was high at rest - it was beating through my chest!  It was about 94-95 per minute.  My typical resting heart rate before TSW was 60-64 when out of shape and 48-50 when in shape.  I also have always had low blood pressure  (100's/60's).  So with a high heart rate I went to the store and tested my blood pressure - 140's/80's.  I was a bit concerned.  I do know that the adrenals help regulate the blood pressure and heart rate.  When cutting the cortisol creams so abruptly, the adrenals take time to work right.  So there is bound to be a re-bounding elevation in heart rate and blood pressure for most of us TSW people.  Just because I knew this was normal for what I was going through, I didn't like it.  I also did not like all the chest pressure I was having for the past few months.  I of course could chalk this up to my increasing anxiety, but I also knew my body and my heart were severely out of shape given I did nothing for 4 months.  This week I noticed some amazing things - and I am attributing these directly to the exercise.  First my anxiety is WAY down.  I have not had chest pressure in over a week.  My resting heart rate right now is 82.  I did not check my blood pressure since last week, but I will check it tomorrow and I am thinking it may be down a bit.  Also for about 2-4 hours after exercising, my skin feels really good - little itch, redness and swelling are markedly down, and little to no oozing. 

So Lisa and Miss Kitty - exercise is really important!  And trust me when I say it is hard to get my big butt off the couch and get moving - but music helps!  Also while I'm in the middle of exercising, my kids constantly tell me how great I am doing and give me lots of thumbs up!  Now I am hooked on moving 5-6 times per week given how well my heart has responded!  I want my resting heart rate back down to the 50's.  :)

So I do sit around a lot still!  But as for the food - would LOVE to eat ready to eat meals!  Especially with 3 kids!   But over the last 5-6 years I have done extensive research and attended conferences on proper eating - and I will just say that the FDA and the food pyramid are wrong!  So knowing what I know about processed food and how food is grown in this day and age, I can honestly say that I cannot go back to that way of eating - maybe I personally could if I had to - but I cannot and will not allow that for my kids.  I have many health issues - small and minor, but still there - from all the processed foods I grew up on.  I have seen significant changes in my kids and other kids I know when the diet is changed to an all natural, organic one.  People make huge errors even with the "natural" diets - they buy organic whole wheat bread and think it's good for them.  It's better than the white bread, but still bad for the body.  So there is just too much I now know that pushes me to eat as natural as possible.  Do we still eat pizza from time to time?  YEP!  We have our cheat days.  But they are the exception.  We even eat ice cream!  But I make it home made from raw milk and raw cream and raw sugar.  I even make my own vanilla extract.  But before going through TSW, I had 5-6 years of making these changes - so they are no longer difficult or seem like a lot of work as it is now just normal for us as a family. 

As for being a hero or hardcore - well ladies, thank you, but you are way toooo kind!  :)  I have always pushed myself to obtain my dreams and goals.  I wanted a job when I was 15 - but the babysitting jobs were not enough for me.  On my 16th birthday I walked to the store (only a mile away) and filled out an application and told them I wanted a job.  I got it and it helped build in me more and more determination and strength.  I often worked 2-3 jobs while going to college.  Everyone in my family were hard workers - from my parents to my grandparents to aunts and uncles.  So I had a good foundation for hard work.  It was normal in our family.  So going through TSW is very hard, but I still push through it to do as much as I can for my family - I want to instill that hard work attitude in my children.  Before TSW I was working full time as a nurse, homeschooling my 3 children, helping to renovate the house we are living in, cooking natural meals, and keeping the household running smoothly.  But some things suffered - like I was out of shape because I could find no time to exercise.  We still are not unpacked after living here for a year - granted we plan to move again soon, but again there is no time for me to be going through all the stuff still packed.  I used to organize all the kids clothes - but now I leave it up to them so their closets and drawers are messy - but at least the clothes are clean!  We also take our laundry to a laundry service - again time is severely limited in our busy lives, so many things have had to be put aside or serviced out.  Hubby spent so much time remodeling the house that we had to hire out a lawn service to mow our 2 acres here. 

Anyway - point is I just do what I can when I can.  But I was blessed with a foundation in hard work and persevering through hard times.  There was no room in life to feel sorry for oneself.  I apologize all the time to my husband for crying about my TSW.  He keeps telling me I have every reason to cry, but it is so ingrained in me that one should just not complain.  But this TSW has taught me to slow down.  It has taught me that it is OK to focus on myself at times - because if I don't take care of me, who will be there to take care of my kids and hubby and anyone else in my life?  It has taught me that life is hard but God is always there right besides us.  It has taught me that there are so many others worse off than myself - but it is still OK to cry about what I am going through. 

Hang in there fellow warriors!  Do only what you can!  Give yourself a break and realize that this is a very difficult thing to deal with and go through.   I will keep posting as much as I can - even if it's about stupid or mundane things! Sometimes we just need to know others are getting through each day so we can get through ours!  You are all in my prayers! 

Sunday, July 21, 2013

And Let The Spreading Continue!!!

Emotionally I am feeling loads better!  Physically, not so much so.  This flare is better in a some areas and worse in others.  My left arm is finally not grossly swollen!!!  My lower arms are mad itchy and red and still oozing in some spots, but the upper left arm - the grossly swollen excoriated horrible area that has made it impossible to sleep in my left side for 4-5 months is now just red!  I slept on my left side for the last few nights!  Woo-hoo!  That's progress!  :)

But then there are the areas that are much worse - like my face.  I have this goatee shaped area of cracked oozing skin.  I only rubbed the area - didn't scratch or even use the comb, but it is pretty bad - painful to open my mouth to eat (hey I could stand to lose a few pounds anyway!).  My neck is back to its pain in the neck self.  My chest and abdomen are itchy red and oozing.  My legs are horrendous!  The spreading is really bad on them and so is the intense itching!!!  I have broken up areas of sores and fissures, but not as bad as if I were to use my nails.  2 steps forward and 1 step back in this area.  I have significant bruising all over my legs from combing them - the itch is THAT bad.  Now I have small itchy bumps on my left ankle and left ring finger - those will be due to swell and ooze in a day or so.  Guess it is time to take off the wedding ring before my finger gets too swollen.  I used to have really bad "eczema" on my ankles and fingers - so these new areas are scaring me - my ankles were as bad as my neck and we already know how bad my neck has been for all these months!  I still have significant scars on my ankles from all the sores I had there over the years. 

Good news is my back is status quo - the redness spread to the whole lower back and upper back leaving the area between my shoulders with just some sores and scratches but not much in redness and swelling.  The Vaseline helps my back stay flexible and the combing has not broken open any areas on my back so it is healing over nicely.  As long as I put Vaseline on twice a day, I have no pain.  This was a very painful area - any movement caused pain all along my back - but with not scratching the skin open, all that pain is now gone.  It's localized to the few areas I still manage to scratch open - tops of my thighs and behind my knees.  A little on my neck too but not bad.  Living without so much pain the past few days have been so nice!!!  I just pray I can keep from breaking open any more skin.  With flaring, my skin is much more sensitive so it has broken open a little on my arms with the comb but not to the point where it is causing me pain or causing deep gashes.  I am hoping my order comes in soon with my new scratchers - will take pictures of them and give a report on how they work for me. 

Exercise is going well.  My heart rate and blood pressure remain elevated above normal (for me).  I am now up to 25-30 minutes each time I exercise.  I am hoping that once I increase to 40-45 minutes, my blood pressure and heart rate (at rest) will start to decline.  My heart rate while exercising stays at a nice 140 - so much better than the 160's.  I have added in wall push ups as well.  Will add in a few strength exercises each week to start developing better muscle tone.  I will keep it nice and easy while still gong through TSW - I still feel an overall high level of stress in my body and still having significant times of fatigue.  Today I did not get moving until 5pm - was exhausted all day.  But around 5 I got on the elliptical and then took my bath.  I am back to feeling tired now but at least I am functioning!  I hope this fatigue passes soon.  I have been keeping up with all my vitamins and that really helped boost my energy for weeks.  But the last 1-2 weeks I have been beyond exhausted every day - sleeping 2-3 hours more than normal as well - whether in the mornings or by taking long naps.

Off I go to get some things done around the house.  Hope every one is having a decent skin day!

Saturday, July 20, 2013

My break is over just when it was kicking in!

Well my break is over a few days early!  I was hoping for a 4-5 day break like I have had most other months - but sadly it lasted only 2 days.  The first day was OK, but very fatigued.  Yesterday I slept until about 2 pm.  I thought I was going to be tired forever!  But I finally got up and ran a few errands.  Was feeling pretty good all evening and didn't need my ice pack all day!  I woke up this morning with my face looking and feeling amazing!  My arms were even nice - much less red and no swelling!  But sadly within an hour of waking, I started itching really bad....nothing new.  But even using the comb for scratching, my skin was opening a little - nothing like it would if I used my nails, but enough for the ooze to start coming out.  All over my arms, my chest, my legs, my back, and even my face - especially on my chin and upper lip.  I am very disappointed but not depressed over it.  One would think I would be, but I have had a revelation!

You see, I started combing my skin when itchy instead of raking it open with my nails.  I was getting huge fissures in my skin - opening it up with vengeance it seemed!  My skin would literally come off in chinks under my nails at times.  I only started this 2 days ago.  Yesterday I noticed something that gave me a huge wake up call.  All day I had little to no pain.  I thought it was all related to my break.  But that is not the case.  I ended up scratching about 5 areas with my nails last night while watching a movie with hubby.  He realized what I was doing and told me to use the comb.  I was upset with myself for absentmindedly scratching, but was glad hubby was there to remind me.  Well off we went to bed and getting off the couch caused huge amounts of pain - but only in the areas where I scratched the skin open.  The pain was not localized to just the open areas - it surrounded each area by quite a bit - felt like my skin was on fire and with pins/needles sensation.  It dawned on me that all my pain has been due to my open skin.  I thought it was due to the dryness, but now I am thinking it has more to do with the nerves under the skin being so raw.  When I scratch the surface open, I am somehow exposing or damaging these nerves that are regenerating.  This is only a theory.  But it makes more and more sense - especially today. I have been scratching with the comb and only taking off a little bit of skin - causing more like slight rug burns instead of deep fissures.  I have irritation at those areas, but not the pain I have been experiencing all these months.

So I think it is safe to say that scratching open the skin is highly detrimental to this whole healing process of TSW.  Not only does it invite infection, and cause the body to expend more energy for healing, but it also causes pain that can be debilitating.  All of this impedes the healing process of the skin from the cortisone damage.   I am now on a mission to find a better scratcher - the comb works OK, but still takes off a little skin.  I need something firm (for pressure) but less damaging to the sensitive skin.  I bought a few things yesterday - a different comb and a brush - they each are OK, but again, not what I am really looking for.  I just hope this is my key to turning around.  I need to turn a corner soon.  Life has been at a standstill for far too long now.  I know 5 months is not a long time compared to some who have suffered far longer periods of time.  I know I have a LONG way to go to heal - I am still oozing and very red.  I am not ready for sun and my skin is still so raw.  But that doesn't mean I can't find a way to function better.  It doesn't mean I can't try to heal faster.  Because this is not about me - this is about my family - their lives have been placed on hold as well and that is life - however unfair.  So I do what I do for them - not so much for me.  I don't care that my face is red and raw or that I have sores all over my skin.  I don't care what others think of me.  I don't care that I no longer can wear make up or earrings.  This is not about vanity.  I just want to be able to function so that my kids and husband no longer have to suffer along with me.

Below is a picture of my deep fissures that are now healing.  I am hoping most of my skin is no longer open by next week.  I have fissures, sores, and raw open areas all over.  I have noticed a huge change in the past 2 days with not re-opening my skin - the sores are all healing!  For those with life-long "eczema" like myself, you all know what it is like to have sores that never seem to heal!  To see the sores shrinking each day is nothing short of a miracle!  I will hopefully have good pictures by next week and a tale of less pain!  I still expect the redness, oozing, and itching to continue, but to not have the pain level I have been living at will be a blessing!



UPDATE (9:45 pm):  Just wanted to add that today was a nearly pain free day!  I had a few areas of pain when moving due to scratching a few areas in my sleep over night.  But this evening has been wonderful!  Still excessively itchy and very red with some swelling and oozing.  But not aving to deal with the pain is bliss!  I might conquer this yet!  :)

Thursday, July 18, 2013

Beginning my 3-5 day break

Today I am beginning my post-period break I get every month.  This lasts from 3-5 days and gives me back some sanity.  I don't clear up by any means, but the pain, redness, and itching are reduced by about 50%.  It's all relative - my face looks more than 50% less red but my arms are maybe only 25% less red.  All I know is I am grateful for these short, but much needed reprieves from the insanity this TSW puts us through!  I typically forget to take pictures during my breaks because I am always busy trying to get things done.  Today however I am still exhausted.  Tomorrow will be my errand day - hopefully my energy levels kick up by then!  :)

The not scratching with my finger nails is working!  I did break open a few sores with the comb so I will be looking for other options when I go out tomorrow.  But for now it will suffice!  I get more dry than normal during my break so I tend to still scratch open skin.  I wish I did this earlier in my TSW journey, but lesson learned!  Hopefully my sores will be healed before my flare increases!

Hope everyone is having a good skin day and staying cool!







Wednesday, July 17, 2013

Stop the SCRATCHING!!!!!

Like that is possible!  Just tell me not to breathe while you're at it!  It's about equal!  You can only hold your breath so long before you HAVE to breathe!  But scratching the skin open is a serious problem for us TSW warriors!  It invites bacteria and viruses that make our body have to fight even harder to get better!  The sores then itch more when healing, making the itching and scratching even worse!

For the last 5 months I have given myself free will to just scratch away - couldn't fight it so I just gave in - mindlessly as I have itched for most of my life - the scratching and the picking at the skin became a mindless habit.  But with the infection I recently had, I decided it was time to take this matter into my hands (or literally OUT of my hands!).  Some great people on the forums have offered suggestions for what to use instead of the nails.  One of my friends had a picture of her legs - there is no open sores!!! She has many bruises from the deep scratching with her brush, but just seeing no broken skin made me jealous!!  I want my skin to not hurt so much from the open dry cracked areas!  So I was going to order a few brushes online but had to do something TODAY!  And so I grabbed my comb!  It tore my skin ever so slightly on the bad open areas, but didn't make me bleed.  It satisfies the itch as much as my nails, but so far no bleeding!  Yeah!!!!

Progress....one step at a time!

Tuesday, July 16, 2013

Back to Planning!

When I first started TSW I really did not make any concrete plans on how I was going to deal with it.  I knew after 30 years of use I was looking at a long and hard withdrawal.  But since I went through a partial withdrawal 7 years before I was hoping for a lighter withdrawal - but unfortunately that has not been the case.  So for the first 3 months I sunk into a deep depression because of the severity of my TSW and having to quit work.  I did not try much to help my skin heal.  But after 3 months I decided to try some things - the vitamins helped wake me up a bit so I had more energy to get things done.  I then tried multiple things from a strict diet to herbal salves.  Things seemed to get worse after starting the diet - my thinking was that my body had more nutrients to heal so it was "spreading" the healing causing me more itching, spreading and pain.  I then tried juicing - hubby stated he noted I got much better (energy wise) with the juicing.  I had to agree.  Unfortunately I slipped with the juicing and vitamins with working once a week - that one day just made me tired enough where I just couldn't muster the energy to juice, grocery shop, and take all my vitamins.  Then I slipped into another depression the past few weeks along with having really bad anxiety.  I pretty much stopped everything except the diet and a few days of vitamins. 

So last night hubby and I had a talk and I am back to planning things out for getting through this.  I did some significant reading on others who have helped their eczema with juicing - there is one website of a lady who used topical steroids for over 20-30 years and decided to stop all creams and prescriptions and went on a very strict diet with one small meal a day with 2 juices.  She got significantly better within about 6 months.  She got worse before she got better (TSW I am sure but she did not know she was going through it seems).  What she did is exactly what I was planning to do - 1 small meal with protein and 2 juices per day.  Unfortunately doing dishes all day stopped me - we do not have a dishwasher so I have to wash all my dishes and then dishes for the kids' meals.  Hubby decided we should get a dishwasher now - when we revamped the kitchen, we put a spot in for a dishwasher but just never got around to buying one as it was not a priority with all the other appliances and furniture we needed at the time. 

To do this more than strict diet, I will need to NOT work for at least 3-4 weeks.  Even the one day a week will throw me off, so hubby says no more work after next week - this gives us about 10 days to get a dishwasher and for me to put a plan together for meals for 3-4 weeks (then repeat the meal plan). 

I am also doing some wrapping of my skin.  Behind my knees have gotten REALLY bad.  No matter how much Vaseline or salves I put on them - I tear them to shreds because of the itching and dryness.  So last night I put on a little salve and then smeared it all over with my Vaseline.  Then I placed 4x4 gauzes on them and wrapped them in more gauze.  Then went to bed.  Never itched all night on the back of my knees!  They looked and felt so much better today!  So this morning I wrapped my lower arms with the same things.  They are slightly itchy but not to the point I HAVE to scratch.  Going to try this on various parts of my body everyday if it continues to help. 

So that is all for now - hoping to get this depression and anxiety lifted.  It brings me down too much and that is not good for getting things done.  Of course after speaking with many people from the support group, it is very obvious that anxiety and depression are all a part of this process - it is normal while dealing with all this.  So I am going to accept it and do my best to realize its role in my life right now but find ways to get around it for a few hours each day.  Of course it helps that I am now on day 2 of that time of the month and the pain and itching are already down by at least 25% since yesterday!  I sooooo look forward to these monthly reprieves!  I know I will flare in about 4-6 days again but for now I will enjoy my coming break! 

Monday, July 15, 2013

The only way I know how to manage right now....

.....is through prayer and being thankful!  Seriously right now I am at a very low point.  The spreading of my TSW to about 85% of my body right now is nearly unbearable - the pain I had in my arms and chest is now in my legs, back and abdomen.  I cannot move at all without serious pain in many areas of my body.  I want to take extra Tylenol and Ibuprofen but I am holding off til tomorrow because I have to try to get to the store somehow tomorrow.  So instead I pray and count my blessings.  My kids asked me the other day why God has not healed me with all their prayers every day for the last 5 months.  I explained that first off God does not answer all prayers even though He hears all prayers - He has His reasons.  Plus in many ways God has answered their prayers to some extent.  First, I have my cure - it may take awhile to get through, but at the end of all this my suffering will end as well.  After 30 years of suffering with eczema, this is a HUGE answer to my prayers over the years.  Second I explained that God has given me the strength to get through each day.  I may have my really LOW days but I still have the strength to put one foot in front of the other each day.  Third God has blessed me with a huge support group through ITSAN - I could not have made it through this journey without the support of fellow TSW warriors!!!  And fourth, but most importantly. God has blessed me with a truly AMAZING family!  I am blessed to have such wonderful kids, an amazing husband, a sister devoted to helping to keep me sane, parents that let me cry on their shoulders and a brother whose words have cheered me along this way even when he didn't know he was helping!  I have many other family members as well and friends who offer encouraging words and support.  I am also thankful for the Laundromat owners who have given me words of encouragement, a special cream that while as not helped heal my skin, it offers a few hours of soothing relief.  And of course all the people I don't know who are praying for me through various prayer circles.  I feel truly blessed and loved.  I could not ask for anything more going through such a difficult time.  My hope is that all others suffering with this have someone to lean on for support through these dark days.  If not, remember us fellow warriors are here for you!  We will give our phone numbers if needed and some of us even meet up in major cities around the world.  No one should go through an illness feeling alone. 

Sunday, July 14, 2013

5 Months OVER and DONE With!

Today marks my 5 month anniversary of TSW.  I know for all the new ones out there, 5 months must seem like a dream to be at.  I know that is how I felt at 3 weeks and even 3 months in.  But today I just see a long road ahead of me.  That road does not come to an end anytime soon.  I consider myself a slow burner - I did not flare on 100% of my body from the beginning - I started out with about 25% of my body in a bad flare.  Now I am estimating it close to 85% or a bit more.  The only areas spared right now from TSW are my scalp and my feet.  Every other area of my body is nearly all covered in red, itching, scaly, oozing skin.  I can't even call it skin any more - some days I refer t it as hamburger meat.  Some days plastic.  I would like the reversal process to begin anytime now.  I would like my neck to stop being so painful and itchy - damn my neck!  It causes me more grief than any other part of my body!  But I used a lot of steroid creams on my neck - well actually I used steroid creams all over my body most of my life - there was not one area I think I used more on than others.  I had "eczema" everywhere. 

I have been doing well with the diet - cheating here and there, but sticking to it 90-95% of the time.  Not doing as well with the juicing or taking my vitamins the past week.  I think it's because the antibiotics make me nauseated part of the day and I just can't stomach taking more pills and the juicing just takes too much time.  I will hopefully get back on both of those things soon. 

Exercise is going well.  I didn't do any yesterday because I worked 12 hours, but for the most part I am consistent and increasing my endurance.  My heart rate is still on the higher end of normal, but my blood pressure at work yesterday was 118/73.....so much better than the 140's/80's I was at last week. 

As for work, I am given "special treatment" as they are only putting me out in triage from now on.  It helps so much!  I have a bathroom right in my area so I can run there to put bacitracin or Neosporin on the back of my knees and my neck when they are too painful to move.  I also do not sweat out there as I am mostly sitting down asking people questions.  Granted, I need my brain to work so I can make good decisions but that doesn't cause me grief or pain.  :) 

As for the depression - well that is still there - I think it will be until my skin decides to clear a bit and give me some relief.  Being on the downslope of this is very exhausting mentally and physically.  I think there is only so much one can do to keep their spirits up for so long before it comes crashing down.  So I no longer pretend all is OK anymore - it helps keep me more even across the board I think.  By being honest with everyone I am able to cope better on an everyday basis.  I cried to my Dad today - something I rarely do.  I try to keep up a good happy face most of the time with my family (except my sister who hears it all! - God bless her!).  But some days like today are just harder than others. 

The bad news is my skin is on fire - it is that time of the month soon and so I am in my PMS days - days when things get so much worse!  But the good news is once that time comes, then I get about 48 hours of a slow calming and then 3-4 days of about 50% relief from the pain and itching.  I am so looking forward to that relief!  :)

So happy 5 month anniversary to me!  Here's hoping for relief over the next coming 5 months!!  And hope all you warriors out there are having a good skin day!!!  Let's keep our chins up and keep that hope alive that some day (hopefully soon) we will have NORMAL skin! 

Friday, July 12, 2013

Woo- Hoo!!! I Broke A SWEAT!!!!!!

Sorry to put out a second post, but I am psyched!!!!  I got on my elliptical today - like I have every day since last week when hubby put it together for me.  I was going to only do 5 minutes a day for the first week and go up slowly, but my body seems to crave the exercise.  I have been increasing almost daily - yesterday I was up to 15 minutes.  But was not sweating - have yet to sweat all these months in TSW.  But yesterday I felt tingling under my skin in my neck, underarms, chest, and back.  It felt like my body wanted to sweat but couldn't.  So today I got on and at the 17 minute mark I was going to cool down and call it a day - but then "Push It" came on my mix by Salt-N-Pepa.  So I did just that - I pushed it - I near sprinted the whole song and half way through I broke a sweat on my forehead and chest!!!!  It wasn't pouring down my face or anything but it was wet!  I have never been so excited to sweat in all my life!!  I actually feel good enough to take a shower!  Now that's progress!!  Of course I may wake up tomorrow in pain and ooze and crap like that, but right now I don't care!  I am just so happy to have my body start working!

My first TSW withdrawal (sort of)

Back in 2005, I endured TSW without knowing it.  I had just given birth to our third child and my skin was a disaster.  I remember going to the dermatologist and trying different creams but coming to the conclusion that they didn't work anymore.  I was supposed to go back to work when she was a few months old but was unable to do so.  I was too sick - but didn't know why.  I remember crying day in and day out, barely able to care for our children while hubby was at work.  Back then he had to work 60 hours per week because we had just bought our first house based on me going back to work.  He did all the laundry, the cleaning, the dishes, and the grocery shopping.  I barely left the house for over a year.  I researched eczema like crazy.  My derm wanted me hospitalized for IV auto-immune drugs.  I said no.  That is when we decided to up and move from NY to AZ in hopes the weather would help.  Our baby was 18 months old when we moved.  After getting to AZ, I found a family doctor who discovered my liver enzymes were through the roof.  He wanted to send me to a specialist, but I refused and found milk thistle - a natural liver cleanser.  Within a week my skin started to clear and for the first time in years I finally slept through the night.  I thought I found "my cure".  During this whole time I was using a small amount of 1% hydrocortisone - I had made a mixture of nystantin, cortisone, and triple antibiotic cream that I used.  It barely helped and I used little of it.  But I was still using cortisone so I never went through a complete withdrawal.  But going from moderate to heavy steroid creams all the way down to 1% cortisone - well it was a big drop for my body.  For the next few years I used my mixture every few weeks - my skin would have flares, but was getting over all better.  We made drastic changes to our diet and I was exercising - I had dropped nearly 100 lbs and my skin and hair were glowing.

BUT then I went back to work in August of 2010 - I had a few slight areas of dryness and redness.  They escalated here and there and I started using straight 1% hydrocortisone instead of my mixture.  Then in 2011 it started spreading more and more.  By February 2012, I was in a constant state of flare on my face and arms and started gaining weight even though my exercise and eating habits changed only a little.  2012 was a very stressful year for us and I was working a lot.  I started using more and more steroid cream - but thankfully only the 1%.  My asthma returned and really started bothering me by fall time.  I was barely sleeping because of the itching and burning.  I was trying to get back to the really strict part of our diet but I was too exhausted to do all the work.

On February 14th I came across Kline's blog - his mom posted a FB post on the GAPS FB page.  I read the entire blog that day from beginning to end.  I was in tears - of happiness for finally knowing what I was going through, and of shear frustration that the derms pushed steroid creams on me and so many others throughout our lives.  I threw it all out - every single tube of eczema steroid cream!  I was scared, relieved, happy, mad, sad, and pissed off all at once!  I researched everything on www.itsan.org that was on their website.  I was on fire about this.

Reality set in very quickly - I was hoping for a mild withdrawal given what I went through years ago.  But given I never stopped using the steroid creams completely for any great length of time, I have now determined I am in it for the long haul.  But I do have pictures to prove my skin will get better!!!  Below are pictures of me in 2010 when I had a few spots on my face and neck.  Otherwise I was mostly clear.  If I had only threw out the creams for good then!  Ahhhhh.....hindsight may be 20/20 but it sucks sometimes!  :)




This last one is actually from spring or summer of 2011 so my skin was doing pretty good even then (at least my face and neck).  

Thursday, July 11, 2013

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.  


Wednesday, July 10, 2013

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! :)

Monday, July 8, 2013

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.

Sunday, July 7, 2013

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

\

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

Saturday, July 6, 2013

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!!!

Thursday, July 4, 2013

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!!! :)

Wednesday, July 3, 2013

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.  


Tuesday, July 2, 2013

Almost 20 weeks....

And still no sign of letting up.  The 4th of July is a day to celebrate the independence of our country.  For me it is 20 weeks of TSW.  In 2 weeks I will have completed 5 months.  I am wishing for a break soon.  I have taken my own advice and took control of this thing.  I am not letting it bring me down.  For the last 4-5 days I have been consistent with taking my bath first thing in the morning.  This allows me to forget about the dreaded bath - I no longer hem and haw over getting in.  I just get it done, no matter how painful it is.  I have noticed a huge change in my attitude and depression since doing this.  I may not feel like going out anywhere, but getting the painful bath over and done with makes me more apt to go out and get things done.  Today I ventured out to the store.  I was also going to go to the farm for our raw milk, but I was exhausted after grocery shopping, so I called it a day and will go to the farm tomorrow.  It's just over an hour away, so it takes up a good chunk of the morning just driving. 

Today I woke up with my left arm very swollen again and oozing - so much that my shirt was stuck to my arm.  Ouch!  It has been many weeks since it did this, so I guess I am making some progress!  My legs are out of control with itching and the spreading raised red rash of TSW.  My arms are itching like mad as well and very painful.  Still not taking any Tylenol or ibuprofen.  Hoping to start back up soon as it will help me get through the days and nights.  Since the ulcer and stopping the pain meds, I have been waking up every 2-3 hours to switch out my ice packs. 

I can not believe I have made it this far through TSW.  It has been one of the roughest times of my life. It has shown me that life is very precious.  I didn't necessarily take my health for granted, but I slacked in the area of health now and again.  I now want to make sure health is always one of my priorities.  Not being able to do things with my kids - not being able to snuggle with my hubby at night, not being able to visit family, and so many other things I have missed out on has made me realize how important it is to remain healthy and able bodied through life. 

At the store today I checked my blood pressure again - 137/76 with a heart rate of 86.  Not good for me.  Typically my blood pressure runs 110/60 and my heart rate about 60.  I will be starting my walking program on Saturday.  I get my treadmill on Thursday but I have to work on Friday.  So Saturday it is.  Hopefully in a few weeks I will see a decrease in my blood pressure and heart rate.  And of course my weight.  I have lost 10 pounds while on this strict diet, but I was expecting to lose much more in one month.  However given how swollen my arms, shoulders, face, and legs are, it does not surprise me that I am holding onto extra weight (all in the name of fluid!).

While I continue to get worse with the spreading of my TSW skin deterioration, I have noticed something I believe is a good thing.  The raised red areas on my wrists have always been raised enough so that I feel I could just scratch the red area right off.  However I noticed today that the red area - while still very red in color - is not raised anymore - it is just about flat with the rest of my skin.  It still feels very rough and patchy, but I no longer feel a defined ridge at the red edges.  I am hoping this means some clearing is coming up?  I can always hope!  :)

Another good thing I have noticed is a slight increase in good brain activity.  This TSW thing wreaks havoc on the brain - making it difficult to think straight, make decisions, concentrate, or process things.  I can now focus on reading for about 15-20 minutes - something I was not able to do even 5 days ago.  I also noticed noises are not as loud, and I can manage when my kids want to all talk to me at the same time.  Again - this is not a HUGE change, but it is something to celebrate given how my brain was so inept for the first 3 months of this thing. 

Well it is time to go make dinner!

Monday, July 1, 2013

Let's regroup and put things in perspective!

So I have had enough of my own negativity about this TSW business.  Do I have a right to be negative?  I sure think so, but it is not productive.  Nor does it inspire me to do more and push myself.  So today I took a new approach - I regrouped and came up with a plan to get ahead of this thing.  You see I have been playing catch up all along.  I gain speed in one area only to be brought down in another area.  For example....I had the sleep thing down - 2 Benadryl with Tylenol and ibuprofen before bed aloud me 6-8 hours of good sound sleep.  But with the increase of pain and lack of moving around too much, I started taking aspirin daily over the past month.  It helps with the inflammation and I was concerned about blood clots in my legs.  But with all the NSAIDS, I developed an ulcer.  I know the symptoms all too well from being a nurse and while I do not agree with self diagnosing everything, some things are just too obvious.  So I had to play catch up with the ulcer but in return I started lacking sleep when I stopped the Tylenol and ibuprofen and aspirin.  Now that the ulcer seems under control, I am back to taking those and my vitamins.  But all of that pretty much explains my recent depression - lack of sleep, lack of energy from no vitamins (they were bothering the ulcer), and inability to eat much due to stomach pain and nausea. 

Today I decided I needed to MOVE!  I can no longer afford to be so immobile!  I am used to running around at work 36 hours a day.  I have always kept relatively active and have always had a low heart rate and low blood pressure.  My blood pressure has risen over the last 4 months with TSW - could be stress and pain related but it is consistently 20 points higher than my normal.  Then I noticed a rapid heart rate with any increase of activity (climbing stairs) - my resting heart rate was always 50-60.  Now it is 80-90.  That is also not good and a sure sign of stress and lack of physical exercise.  But I lack the ability to be able to walk outside like I have wanted to do - my skin still gets aggravated immensely being outdoors more than 5 -10 minutes.  I had bought a cheap stepper - but that mimics climbing stairs and I have yet to be able to do more than 3-4 minutes on it.  So off I go in a few days to get a treadmill.  Not going to get anything expensive as I know once my skin heals I will be exercising more outside where I would prefer to be. 

As for the diet - still on it.  But made a huge mistake yesterday - had my first gluten in 4 weeks.  NOT good!  My stomach blew up to about 6 months pregnant looking!  I thought I was going to die from the pressure!  Luckily I had learned some breathing exercises to get rid of gas!  It was horrible!  I will be keeping gluten out of my diet until I get past this TSW.  It is just not worth it!  I did add dairy this past week and am doing well with that.  We drink raw milk around here and use raw butter in our food.  The raw milk really seemed to help my ulcer.  So I will keep it limited as dairy still causes inflammation, but the benefits of the raw milk are worth it I think. 

I was able to get some work done around the house - some much needed organizing and cleaning.  I blasted the radio to the oldies and the kids pitched in and really helped out - we danced and sang!  Of course after 30 minutes I was exhausted, but felt good about what we accomplished. 

My skin still sucks rocks!  It burns and itches and keeps on spreading!  The most painful areas lately are the back of my knees, my left arm, and the left side of my back.  I cannot believe the swelling in my upper left arm!  It is driving me mad.  I am hoping it clears soon - like the front of my neck.  I still getting itching and some burning to the front of my neck, but nothing like the first 3 months!  It is my calmest area right now - so I hope my arms follow suit soon!  I have not been able to sleep on my right side all this time because of my arm. 

One good thing I have noticed is that I can now tolerate Vaseline again - was not able to use it during the weeping times - it would make my skin itch 10 times worse after it was on for 30- 60 minutes.  Now I put it on the back of my knees with no itching.  I then started putting it on my back and again no increase in itching.  So today I tried it on my face (which remains SUPER DRY) and I had slight itching, but it really helped the skin exfoliate - so instead of itching I just peeled off a whole bunch of skin and had slightly smoother skin underneath. 

Today I begin a new beginning - instead of waiting for this TSW to pass so I can live life again, I am going to start living life the best I can and let TSW lie where it may!  Still going to have bad days, but I am taking the reins again and will take back my life from TSW!