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!

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!

Bad Times

Not sure I have the energy to keep blogging - looking back I see nothing but depressing posts - but after looking at other warrior posts, I guess this is the worst of times.  It seems the first 4-6 months are the absolute worst.  That makes sense.  But I guess I wasn't expecting things to progressively worsen throughout this whole time.  I was status quo for a little while, but the past month has just brought me back down to where I was emotionally in the beginning.  I was doing OK but for some reason this week just weakened me emotionally - especially the last 3 days.  Last night I broke down crying again - the pain seems to never end.  My skin was just burning all over and I went to take a salt bath - just kept burning.  When I went to rinse off, it burned even worse - something it has not done in the past.  But then again we were staying over night at a hotel while visiting family in another city.  At home here we have well water.  I think the city water that is treated with chemicals caused the worsening burning of my skin.  Oh well - another bad day - but I guess one more day closer to healing right?

Holy Fat! And Things I CANNOT Wait For!!

I have to laugh at myself - a mirror does not do justice to the amount of fat I have accumulated over the past year or so - getting worse with topical steroid addiction and then going through withdrawal - have barely exercised.  So when I asked my daughter to take a picture of my back and looked at it, I laughed (better than crying I suppose).  I could not get over how fat I have become!  Ah well, in time I will have the energy to exercise and get rid of it!  :)  So please do not mind the fat in the pictures below!!! :)

As for what I cannot wait for, I have a very long list....here are a few:

I cannot wait:

....to walk and move without pain somewhere.
....to wear shorts and short sleeved shirts.
....to wear makeup.
....to take a shower!
....to not think about my skin 90% of the time.
....to snuggle with my hubby again.
....to play with our dog.
....to have energy to do normal things in life.
....to enjoy the hot summer days!
....to enjoy going out during the winter and not have the cold wind burn my skin.
....to go to work and not have anyone remark about my skin or ask me if I am contagious.
....to not cry so often.
....to play with my kids without getting agitated or exhausted.

That is my list for today....there are so many things I cannot wait to do!  I also wanted to mention the picture that covers the top of my blog.  That is the view from where we plan to build our home in Kentucky.  It is our dream!  We have almost 70 acres there and we plan to have a small farm.  We can't move and build until I can go back to work.  So I put that picture there for myself - to remind myself that there is a really good thing waiting for me at the end of this journey.

Off to go try to organize some shelves now.  Here are a few pics of my recent spreading.

The lighting toned out the red a bit, but you can see my arms are red right up to my armpits.  Then the redness goes from the back of my neck down and from my flanks inward.  A month ago I had only the back of my neck and a few small patches on my shoulders along with a few small patches on my L flank.  

The back of my knees that have been spreading for months - initially I had a few sores right at the crease.  Now it continues to spread up and down from the crease.  It is a reddish purple color.  And then there are the sores and vesicles on my lower legs - I have more on the front of my shins, so I am getting worried about my legs going from bad to worse soon. 

My face is still very red, but no more oozing - just SUPER dry all over.

Desert dry skin today and ? oil in hair!

I feel like my skin is sitting out in the desert and hasn't had any water in weeks!  It is sooooo dry!  I went from being red swollen and oozing to one big dry patch!  I have some oozing here and there but it is very localized to a few areas.  I have been sweating more than usual for the past week - I still only sweat under my breasts....however I think I may be sweating here and there on my neck - a good sign.  I also noticed I had slightly oily hair yesterday - I last washed it a week ago.  That is good news too given I went 2 weeks in month 2 or 3 without washing my hair and no one could tell because it wasn't oily.  Small changes, but progress none the less. 

Another thing hit me yesterday reading through more blogs on TSW - I think I am a slow burner as someone suggested.  I did not turn red all over in the first month like many red skinners.  I started with a red neck and red patches on my arms and face.  Looking back on pictures I notice how my arms progressively became fully red.  It continues to spread ever so slowly all over - first with little vesicles, then open sores, then small red patches (or blotchiness), and then full redness.  My lower legs are breaking out with vesicles.  My upper legs have sores and small patches.  My back and abdomen have growing larger patches of redness.  It all itches and burns.  Not to mention the other areas that have been red are still red and burning and itching. I think I have to prepare myself for the long haul here and possibly with no big break.  I am just going by other people's experience, but the more I read, the more I am afraid this is the direction I am heading into.  I just wish the older areas would clear up before new areas break open.  Oh well....just have to deal with what comes my way. 

Now that I have more of my brain back I am making plans for the future.  I really want to do more to help others with this.  We have plans to move to another state as soon as I get well enough to work.  I want to find a dermatologist in that new state who would be willing to listen and to become a supporter of TSW.  I also am thinking about going back to school for my masters or doctorate in nursing.  High hopes but gives me something to focus on other than my skin! 

Life goes on.....but sometimes I wish it would stop!

I wish I could hit a pause button for life right now.  Can't I pause everything around me until this TSW is over with?  That's a nice thought, but unfortunately life doesn't work that way.  Life goes on no matter what we are going through.  Even if we are going through something else that is difficult in life like financial strain, kids out of control, divorce, other illness, etc.  Life continues on around us.  And when we find ourselves in a dark place we wish life would just stop so we can catch up, breathe deep, collect ourselves, or get better.  Then we can hit play again and join in with life's regularly scheduled programs. 

Today I so desperately wanted to hit the pause button!  I went grocery shopping 2 days ago but forgot a few important items - like paper towels.  With 3 kids, paper towels are a must! We ran out late last night.  Hubby is working 60 hours a week so I do not have to work full time.  So I could not ask him to go get some before work this morning.  I had a bad night - barely slept because of extreme itching again.  I knew that if I didn't force myself to go to the store as soon as I rolled out of bed, I wouldn't go at all.  The nearest grocery store is 20 minutes away - so off we all went literally as soon as I rolled out of bed.  I went through the self scanner as I did not exfoliate my face and it was all red, dry, and peeling.  My hair was up and a mess.  Ahhhh.....the joys of not being able to hit pause!!

My biggest problem with this whole TSW thing is how it affects my kids.  I homeschool them and I try to keep them active in activities like going to museums, parks, and gymnastics.  Cross all those off the list for the last 4.5 months....except the park - in which I have taken them 2 or 3 times this year.  We haven't even gone to church lately.  Even though I have more energy, my skin is so much worse and my pain seems like it just keeps increasing.  I feel so bad for my kids....they see me in so much misery and pain.  I wish I could get up and put a smile on my face no matter how I feel so they do not have to see all this.  But I can't.  I'm not that strong. 

Today is just another bad day - hopefully I will have another good couple of days in 3 weeks when I am due for another 4-5 day break from the flaring.  But I just do not know what is going to happen.  Maybe I will get a BIG break or maybe none at all.  All I know is I am gearing up for the weekend.  We have a few big things planned and hopefully I can manage. 

Flare Pics

Just wanted to post a few more pics between yesterday and today with my increasing flare....again for my own account....going back on my blog helps me to gauge my progress.

This picture shows how bizarre TSW can be - the palm of my hand is baby skin smooth and white.  And the rest is gnarly red elephant skin.

Me and my ice pack are BFF's again!

The left arm all torn up.

My right arm with its extra wrinkly skin on the wrist.

This is a great picture showing the difference between my "normal" skin tone and my red skin.  Here I placed my arm on my thigh in the only area where it is very clear (has a few sores between the shin and the upper thigh).  Not sure my leg will be like this much longer given how it is spreading on my legs.