Wednesday, December 17, 2014

22 Months and Pictures!

So here I am with my 22 month update and pictures I have taken over the last few days.  I hit the 22 month mark on the 14th.  My TSW anniversary is Valentine's Day of all days!  So my 2 year mark is approaching.  Not worried about it at all.  I know many people who have an anniversary flare.  Last year about a week or two before my 1 year mark I did experience a flare on my hands, wrists, arms , and ankles.  I looked back on those posts today and I CANNOT believe how far my hands have come!  Working as a nurse, I used to slather my hands in potent steroid creams to keep them from breaking open and having to deal with infections.  I expect if I suffer a 2 year anniversary flare, it will more than likely affect my hands again.  I think they will be the last areas to heal.  But I have to say they have been doing very well.  I experienced a flare on only 2 fingers about 2 months ago and they are now showing signs of healing this past week.  I even worked about 24 hours a week over the last 2 months and my flare never got any worse than those 2 fingers.

As for the rest of my skin....dry and itchy probably from the cold winter weather.  I still get pink on my face, neck, and arms with dry patches.  I have small sores here and there that heal within a few days or a week.  I get hives now and again.  Sometimes I will have them for a few weeks and then they go away for a few days.  I know they get better if I stay away from dairy but with the holidays I personally do not want to worry about following a strict diet.  It would cause me more stress so I just try to be reasonable.  In the pictures below my face and neck look like they are flaring, yet they feel great to me....very little itching and no burning sensations or even feelings of irritation.  I remember taking the pictures a few days ago thinking they were going to come out great with nice clear skin, only to see all the pink and dry patches.  I find it frustrating as there were times I would take pictures of my skin thinking the pictures were going to show just how awful I felt only to see semi decent pictures....sometimes pictures cannot truly grasp how bad or even how good the skin really feels.  So even though my skin looks irritated, it doesn't feel irritated and that is more important to me than anything!

Recently I have gone through a few weird things.  One being a feeling of flaring without any actual problems with my skin.  Last week I was having cold and hot flashes for 3-4 days.  I felt like I wanted to jump out of my skin but my skin actually felt fine.  I had to wear ice packs on my neck for over a week because I felt so over heated.  Even my skin felt very warm to the touch....I froze everyone here at home because I con't stand having the heat on.  I turned the thermostat down to 64 or 65 degrees those days and still felt hot.

As for my supplements....I have been on and off of them the last few months.  I take them only when I experience flaring.  The MSM powder really helps calm any inflammation.  And when I'm not taking all my supplements, I am taking basic things I would even if not going through TSW, like my probiotics, and my fermented cod liver oil for Vitamin A, D during the winter.  I also take my active B's supplement about twice a week.  But that's all.  I've been so busy this month that I just don't take the time - I probably should stick to most of the supplements even when not flaring, but I don't.

After the holidays my focus will be our diet and doing those last 2 cleanses.  I was going to the do the gallbladder cleanse a few weeks ago but didn't because I was experiencing gallbladder pain - I wanted to spend more time softening any possible stones with a few weeks of apple juice.  I personally do not want to do a gallbladder cleanse only to move a big stone into one of the ducts and get a blockage.  No thanks!  I will play it safe and focus on this later.  I truly just want to enjoy the holidays!

As for any flares I do experience - they are typically localized to a small area like my chin or one forearm.  They last no longer than a day or two with a few exceptions of some lasting 3-4 days.  I no longer experience any burning of the skin - all flares now are just on the surface.  I truly believe most of my nerves are now healed.  Every so often an area will hurt when I move - I figure it's dry skin pulling.  I no longer get deep sores - everything seems to be just a few layers deep.  I haven't shed a lot of skin at once in many months now.  I change my sheets weekly like normal and no longer brush off dead skin.  It's just not flaky anymore.  I no longer lose a lot of hair at once like I did on and off during TSW.  My hair is growing in where I did lose it and feels nice and strong.  My nails were badly affected during my first cleanse almost 2 months ago.  Half my nails are bumpy and weak.  But I've recently started drinking more bone broth and taking a collagen supplement powder so hopefully in a few months my nails will be strong and healthy.

As for the rest of my life....working part time is going very well.  Our house is in order.  I exercise 3-4 times a week.  Kids are doing very well with their schooling.  Have great plans for Christmas.   And my energy levels are on average very good.  I do experience fatigue now and then, but for the most part it doesn't stop me from getting things done.  I have been tracking my blood pressure and pulse since starting TSW.  The absorption of the steroids over years affect the adrenals in that they falsely lower blood pressure and heart rate.  I had concerns that once stopping the steroids I would experience high blood pressure.  My blood pressure did get high for me for the first 18 months or so...120- 130/70- 80.  My heart rate was elevated in the 80's and 90's at rest.  But the last few months of exercising and what not I have noticed a steady decline in blood pressure and heart rate (I get it checked every 2 weeks or so at the grocery store).  Well yesterday my BP was 104/66 and my heart rate was 71.  I did not sit down for 5 minutes first like they recommend.  I was flying around the store and just sat down and hit start.  So I am very happy with this as it shows I am responding very well to the exercise!  And considering I am over 40 and on no prescription meds nor taking anything to lower my blood pressure, I'd say that's pretty darn good!

One last thing:  Just want to say thank you all for reading and supporting me!  I was not sure blogging about my journey was the right thing to do, but even this far into TSW, I am still receiving comments and personal emails that make me realize all this blogging is worth it!  Just recently I received this comment and it brought tears to my eyes: "Thank you so much for your blog. I recently heard about topical steroid withdrawal. I have not had any steroid medication in about 6 months but still suffering. Your pictures were like looking in the give me hope! ..thank you!"  

My face and neck in a state of pinkness and irritation but feels fine. 

Left arm pretty decent - but like my face and neck still pink here and there.  But feels really good.  

Right arm same as left - looks worse than it really is.  

Legs still doing very well.  Don't mind the hair - haven't had time to shave or get waxed!

Close up of foot and ankle....nothing going on here! 

Left hand doing well...just a few small sores/spots but they don't bother me at all.  Just noticed now I have slight elephant skin on my forearm/wrist area.  

Right hand is where I have those 2 affected fingers.  But they are looking and feeling better each day!

Merry Christmas!!!!

1 comment:

  1. Happy New Year! I am a lurker, coming by occasionally to drop by and read. I have a daughter with severe allergies and the accompanying joys of e and a etc. My best friend had E so bad that she had deep fissures. Here is a link to her blog.

    I thought her light therapy was quite interesting and over the past year I've witnessed her hands improve amazingly.

    You are an inspiration. Your strength, your courage, your willingness to share your journey.
    May 2015 be a wonderful year for you and yours.