Near crippling fatigue

Last week when I worked, I did fairly well the next day - a little more tired than normal but was able to function quite well.  Yesterday I worked again (another 12 hour shift in the ER) and today I can barely move - it is as if my muscles were pure jello.  Moving is difficult and trying to think is near impossible.  Writing this is hard.  I am forcing myself to think because I need to figure this out.  The last time I felt this way was the first few months of TSW.  I gained significant energy when I started taking vitamins and supplements.  When I stopped them one time the fatigue came roaring back.  Well I stopped them only a few days ago when I started juicing.  I figured the vitamins in the veggies I was drinking would make up for the supplements.  I think I am wrong.  I think my body needs the extra vitamins.  Especially my adrenal glands - in order to heal and work properly again, the adrenal glands need extra vitamin B's and C.  When I was taking the vitamins, my urine would be bright yellow from the excess B's my body didn't utilize.  Well, my urine hasn't turned bright yellow with the juicing.  So today I am going back to the supplements AND the juicing - hopefully the vitamins give me enough energy later today to juice.  I am so fatigued I only made a few goals for today - change my sheets, juice, and get 5 more cases done (for my at home job).  Typically I do 10-15 cases per day but today I am aiming low do to how I feel. 

Surprising my skin is not so bad - getting my monthly will cause it to be in a major flare, and it was, but today my neck is nearly clear and my arms are not as red and itchy.  Maybe another 4-5 day break approaching?  I would get a 4-5 day break from the major flare a few days after my monthly started.  This is only day 2, so maybe I am going back to my previous pattern. That would be nice!  :) 

Well that is all for now.  Too tired to go on.  Hope everyone else is having a good skin day!!

Oh My Goodness!!!!!!!!!!!

I don't write 2 posts in one day, but this is deserving.  I just completed my last post and was re-reading it.  Something dawned on me!! I had to go back to the calendar and sure enough I am entering month 5, not month 4!!  I do not know how I have been counting wrong, but apparently my brain is still not working at top level!  Not sure if I am happy about this or saddened - thinking I would be getting a break sometime around month 4 and now that it has past and I am still in a near constant flare, well I am a bit depressed the more I think about it.  I was hoping I went through a near withdrawal 7 years ago when I went from using prescription creams to occasional over the counter hydrocortisone (mixed in with other creams).  I had a terrible 2-3 years.  I then had a good few years but went back to using more and more of the hydrocortisone.  I was hoping my withdrawal wouldn't have been so bad considering I thought I had withdrawn from the higher strengths, but oh well.  It may be I am in for a long haul here.  I have read some people go more than a year with no break at all.  I have also come across a lot of people who get a break around month 4.  So I was hoping....not to say I can't get a break in month 5 or 6 or 7.  But with 30+ years of use, my withdrawal is not going to be on the lighter side.

With all that said, I am happy to know I have made it 4 months through this horid thing!  I am 1/3 of the way done with a year!  My goal is to be able to enjoy next summer!!!  This summer is out for sure!  I get attacked by bugs the instant I step outside - maybe the ooze attracts them?  Either way, I already knew this summer was going to be a dud, so no disappointment there!  I just hope I can kick up to 2 days a week of work by month 6.

Month 4 Begins!! And Juicing!!

Today marks the beginning of month 4 - I threw away all my creams on February 14th of this year after coming across Kline's story.  Looking back, I can see improvements - although not in my skin.  Pictures of my skin initially showed some redness, a lot of excoriation all over, and dryness with oozing and redness mostly on my neck and chest.  Now I am red all over minus my mid thigh area, lower legs, and backside.  Everything else is red, red, red.  I am going through an almost constant flare since the beginning except for 3 breaks where I had 4-5 days of less itching and pain.  I feel I am still very swollen - especially my arms.  I ooze anytime I scratch and no matter where I scratch, my skin breaks open (except in the noted clear areas above).  I have noticed a few spots on my lower legs recently so this thing is still spreading.  

I have yet  to sweat or develop oil on my head - I go days without washing my hair and it never gets oily.  I still have a hard time maintaining a good temperature - I am either too hot or too cold.  I still cry at least once a week - all out crying over the pain, not able to work or do much of anything.  So where are these improvements?  

They are emotional and physical.  Emotionally I am able to deal with this more knowing I have come this far. I now view my days of crying as pitty parties whereas before I felt entitled to be so upset as to cry so hard.  I am not as short with my kids as I was initially - they have been my support along with my husband - doing pretty much all work around the house.  They let me take naps and play quietly until I wake up.  One of my kids told me I wasn't so frustrated as I have been.  As for physically - I noticed a recent change in my pain - I have more intense pain at times but getting into the tub has been much less painful this past week alone - even with all the scratching I have been doing.  Overall though I see my outlook on life improving - I am trying new things like juicing.  And I have returned to work one day a week - that day is hard but it gives me a sense of purpose and gives me something to compare how I am doing.  

As for juicing - I have always wanted to do a juice fast - especially when I was hell bent on finding a cure to this "eczema" before I learned about TSW.  But I never had the time or energy.  I now have the time, and a little bit of energy.  I have been taking lots of vitamins and supplements these past few months and noticed an increase in energy when I maximized them and started an all natural diet.  The only thing is I hate taking pills - even vitamins - they are not natural.  So I picked up on juicing again and did a lot of research - I found a great website with free juicing recipes - and they are mostly vegetables with a little bit of fruit to compliment the veggies.  I have tried some bad recipes in the past here and there - but the first recipe I tried today was very easy to drink.  It had cucumbers, romaine lettuce, spinach, celery, lemon, berries, and oranges in it.  All my kids tried it and everyone but the youngest liked it.  See how yummy it looks.......

I know it looks gross, but it tasted pretty good (especially considering I hate spinach)

I am prepared for a whole week of juicing!

I plan to juice 2 times per day - eat eggs for breakfast and then meat and veggies for dinner.  Us TSW warriors need a lot of protein for cell repair and generation.  So I plan to give my body as much as possible to help it heal as quickly as possible.  :)

For the Ladies Only!

Not that men cannot read this - but I am warning you, it has to do with female only issues - something men just cannot understand as you do not have THOSE parts.  :)

So, ladies, I am now entering month 4 (tomorrow) and this will be my 4th period with TSW.  I was starting to get much worse with the skin breakout spreading to the last places that have remained clear.  The last few days have been rough with my skin....such intense itching!  And the pain!  Normally I only take Tylenol and ibuprofen at bedtime so I can sleep better - yesterday I took it in the morning and again today I feel like I may need it during the day.  This morning my skin is swollen and weeping like mad!  It is so gross - it is always gross, just more gross than normal!  I was getting frustrated - but now I think I get it.  I went to the bathroom a few minutes ago and lo and behold I am spotting  - something I typically do a few days before my actual period starts.  I have been bad at keeping track of my periods lately but it seems this one is coming early.  My period has been coming around the 20th-22nd of each month if I recall correctly.  But I have had times where it came every 3 weeks for many months - crazy! 

Anyway my whole point is I have had this consistent history every month with TSW - I start to PMS, and within 24 hours my skin starts to flare worse than normal - more intense itching, more swelling, more oozing.  It goes from a bad flare to a REALLY bad flare and lasts until the second day of my period.  The first 2 months I would get a few better days and when my period is ending I would get a 4-5 day break in most itching and pain and oozing before I would flare again - that would last until my next period.  Last month after my period, I remained in a bad flare and did not get my break until about 10 days after my period ended.  Now I am in a really bad flare again, ready to start my period.  I am dreading the end of it - hoping for a break but after last month I am afraid of having this bad of a flare for 2 weeks!  But it is obvious to me my hormones have something to do with the intensity of my flares...they don't cause them or anything, but they do affect them. 

Just wondering if they affect anyone else's flares/skin. 

Frustrated

Frustration is nothing new here.  Living with this almost constant flare is just plain frustrating and agonizing.  I am trying to do more as I see my husband getting tired from doing more than he should.  I am finally getting all the dishes done and am getting other simple tasks done that I have barely done the last 4 months.  I just wish I could work full time again.  Hubby is working overtime just to keeps up with the bills.  I was fortunate to have 5 years off when the kids were much younger.  I have always wanted to stay home.  But hubby asked me to go back to work when he saw the economy tanking and decided we needed to change some things in our life (like purchasing land and starting a small farm).  We bought the land but have yet to move there to start our farm.  We were supposed to go this summer but this TSW has kept us from going.  The money we saved for moving and for putting a house on our land was used initially to compensate for me not working.  So now we have to save all over again.  And we can't start saving until I go back to work.  More frustration!!  Oh well, the way we see it, God has a plan for everything, so we just need to be patient. 

My skin is so flippin itchy!!!  I have broken open my skin on my forearms and wrists again - hopefully the balms will heal them again.  They are oozing along with the other areas I have scratched - my flanks, abdomen, chest, back, groin, and back of knees.  I cannot stand that ooze smell!!  It is making me nauseated!!  My left arm is thankful not itchy and not swollen - just dry like my face.  Thinking the goldenseal balm really helped given my left arm has been swollen since month 2 I believe.  And considering I am still flaring all over, it is amazing that my left arm is not swollen.  And funny now that I think of it, it is not itchy in the areas where I put the goldenseal balm.  Hmmm....maybe I will test the waters with that one on one of my forearms where the itch is intense.  Getting ready for my evening bath soon, so I will follow up tomorrow with this.

Looking over my pictures again, I am still amazed at how much better my neck looks.  My arms are no different.  Yesterday my neck still felt awful, but today I was able to go a few hours here and there without any ice.  What a nice relief! 

Well I am off to do some of my at home computer work - I make more than 1/2 of what I was making, but it brings in something!  :)  Hope everyone is having a good skin day!  If not, remember that it will get better!!

Changes or Coincidence?

So many things with TSW is deemed coincidental - especially with what one thinks sets off a flare.  I have been doing an experiment on my arms the past 4 days with the new herbal salves I researched and purchased.  I saw an improvement within 2 days with the Injury-Heal balm.  Not only were the areas I gouged my arm up healing, but I was getting significant pain only in the areas where I put that specific balm on.  It was at least 3-4 times worse than my typical pain I deal with.  It is a deep pain - I am beginning to wonder if it is nerves healing.

Currently I am at week 17 (in 2 days that is) and will officially be done with month 3 on the 14th!  Hoping month 4 is not any worse, maybe some more noticeable healing to come?

I have put the Injury-Heal balm on my left wrist and behind left knee.  I started adding it to troubled spots the past 2 days - like a sore on my right breast and my neck - I can say the sore on my breast is completely healed in just 2 days and my neck is looking much better.  Again coincidence?  Not thinking it is due to the healing on my wrist/forearm being significant in 2 days while my neck continued to flare and now my neck is feeling better when other places continue to remain the same.  It doesn't take away the redness and it doesn't take away the edema.  Right now it is just healing the surface scratches - that I can tell.  Now the Comfrey balm I am putting on my right wrist and behind my right knee.  No significant difference there.  But I am planning to keep at this for 2 weeks given these things take time to work.

On my face I put what is called Baby balm.  It is soothing, but doesn't seem to help.  The pictures below show my face about where it has been - just very dry and tight.  It doesn't itch too much and I don't have too much pain on my face - a good thing!

Now for the Goldenseal balm - this I bought for infections as goldenseal has antimicrobial properties.  I put that on my left upper arm where I have a lot of pain, swelling, and constant itch for the past few months consistently. I don't think it is infected, but the fact that it is by far the worse area on my body I figured I would try it.

The last balm is my simple balm - just olive oil and beeswax.

Please do not mind the pictures - I was having a hard time getting the exposure and lighting just right to show the redness.

Here are my balms

Left wrist 2 days ago

Left wrist today - redness is actually the same - just taken in 2 different lighting areas.  This is blurry but the scratches on right side are definitely more healed.

Right wrist 2 days ago

Right arm today - again the redness is actually the same and I didn't take the exact same shot - but looking at my wrist tonight and looking at the picture - there is a little change in the scratched area right below where the redness starts - that is looking more healed today.  

This was taken 2 weeks ago

This is from today and I see a big difference in my neck - however it feels the same as 2 weeks ago!  Can't go a minute without my ice!

Back of my neck 2 weeks ago

Back of neck today - again looks better but for some reason it still hurts and itches like it did 2 weeks ago.  

Face 2 weeks ago

Face today - I notice it looks similar - but the scratched areas are healing.  This is typical of how my scratches heal - they take forever - which is why I was excited to see the quick healing on my left wrist. 

Just a shot of the back of my left arm - very swollen and much more red than the picture depicts.  

And this is my face - it has been like this nearly from the beginning - just super dry and flaky - red (but not as red as my arms) and thankfully not very painful.  

1 week Diet Update

It has been one week since I drastically changed my diet.  I started the first phase of The Maker's Diet.  No wheat or any grains, no sugar, no dairy products, no fruit except grapefruit, berries, and cherries.  This first phase lasts for 2 weeks.  Second phase will include some fermented dairy and more fruit and corn.  Again, that will last 2 weeks.  Then the standard diet - all natural foods the way God intended them to be eaten.

Any differences?  Not in my skin, but I was expecting changes in my skin any time soon.  But I have had significant more energy this week than any other time during my nearly 4 months into topical steroid withdrawal.  I have accomplished more chores, gone out more, and overall feel much better.  Now I started the diet about 3 days or so into one of my "breaks"....a 4-5 day period of time I get about once a month where I feel much less pain, have less itch, and less reddening.  My flare returned and it is by far one of the worst times for my skin...more red, more pain, and definitely more itching.  I have not gone the past 4 days without ice - not even during the night.  Last month I was flaring bad on my arms, chest, and back, but my neck was not so bad and I barely used the ice - but now, I am back to a bad neck flare and need ice every minute!  I also have a bad flare in more areas than before - the redness seems to keep spreading without any clearing in the areas it started.  Right now I have a constant flare with my arms from wrist to armpit, all around my neck, upper back, lower back, chest, abdomen, upper legs, behind knees, and groin.  The only clear areas right now are my lower legs and feet, my hands (except a few fingers), my middle back, my bum, and my scalp.  I am thankful for these clear areas, especially given my previous TSW with a full body withdrawal....and I remember my scalp being so very bad.  I am also right now having worse body temperature control. Everyone around me is hot with the warmer weather, but I am over dressed and freezing.  This also went away last month, so for it to return is a bit discouraging, but I know is part of the process.

Good news is I am losing some weight - I have about 40 pounds total to lose - and this week alone I am down 5 pounds.  I will be incorporating walking for exercise in once my skin gets to a point where it can tolerate a little over heating (aka basically when I start sweating - which I have yet to do except in 2 small areas).

Other things I am doing:  I started with herbal salves for my skin 2 days ago.  Again not expecting any changes anytime soon, but will be documenting my skin every week to see if there is any consistent change.  The salves do not last as long on my skin for being able to move with less pain, but they feel better on my skin than the vaseline.

I am also going to start juicing.  I do not plan to do a juice fast anytime soon, but that is in the future.  Right now I just plan to add more greens to my diet and healthy juice to bring in more nutrients and vitamins my skin needs.

Again, I am not looking for any miracles, or whatnot.  Nor do I believe any specific food group causes the flares to be worse or better.  I just believe in providing my body with as many nutrients as possible to achieve optimal healing.  I also believe in not over taxing our bodies to have to use excessive energy processing processed foods when that energy can best be used in healing my skin.