Playing catch up. A 3 in 1 post.

Hello,

I have been rambling on to myself in little notes and entries that I have never posted, only saved on my desktop and stare at.  I honestly can't look at them anymore, so despite the fact that they're rambling and poorly edited, I share just to let them go!
If you're up for some moderately depressing light reading, this may be right up your alley!

xo
- Maren



February 1, 2015

Hello there 2015!

The year is off to a pretty good start.  While I haven’t been feeling the best ever, I have a lot of great things in place, and am feeling really positive about where 2015 will take me. 


1/22/15 Lab Work 

The labs look better. The Anti-nuclear antibody has dropped to previous level of 1:160, remaining antibodies remain negative. The muscle enzymes are completely normal, especially the LDH has dropped to normal. The thyroid is normal. The vitamin D level looks very good. The inflammation markers are slightly above normal, no real difference from previous levels. The protein levels are normal. The rheumatoid factors are negative.  

C-REACTIVE PROTEIN (<0.50 mg/dL) = 0.74 
SEDIMENTATION RATE (<21 mm/hr) = 22
LD,TOTAL (125-220 IU/L) = 356
ANTINUCLEAR ANTIBODY (ANA),SCREEN (Negative) = Positive
TITER,PATTERN/INTERP (none) = 1:160

Current Life Goals
My FitBit tells me that when I am basically on the verge of death each time I go outside to fill my birdfeeder.  #sickpeopleproblems #onedayatatime #everystepcounts…  I don’t know – am I missing any inspirational hashtags on that one? 
Regardless, it’s basically my weekly intense workout to trek out there in the snow and fill that thing.  So if ever I am missing and presumed dead, one should look to the Eastern side of my yard for me first.

I purchased the FitBit so that I could have another tool for tracking my activity and actions alongside how I feel in the days that follow.  It was no surprise that a few Saturdays ago when I felt the best that I had in months, I took twice as many steps as I had in all days prior since tracking, and subsequently felt twice as exhausted in the 3 weeks afterwards (I’m still in said timeframe).  Damn.

Upper arm and thigh strength has been a real challenge for me, and seems to be getting worse. 

I will be starting a new physical therapy program this week to hopefully gain some strength back that has been absent for far too long.  I still haven’t quite recovered to the strength that I had before we moved into our new home.  It’s been 2 years.  I felt like I was starting to get some momentum back this past spring, but too much fun and not enough self-care ruined that opportunity.  Lyme disease this past Fall official kicked my butt back to square one.  I sure hope that 2015 is the year that I can turn things around.

I have been diligent about pushing myself as much as I can at home.  I have moved from the stationary recumbent bike, to the treadmill where I had made it to walking briskly for 10 minutes before nearly being launched off the back of the treadmill like a clay pigeon (I’m not at 10 this week though, as I have been dealing with a pretty intense flare).  This small feat may be surprising to hear for those who don’t realize how tired my muscles become after a very short period, but this is a major accomplishment for me.  I had been at about 15 minutes of walking last summer, but came to a quick halt when I got Lyme disease. 

Not being able to sustain activity for extended periods has really wreaked havoc on my metabolism as well.  I am sure that my added weight has made it harder to move.  I get so frustrated when I am tired so quickly.  I want to get more exercise, get my muscle tone back and lose some weight; it’s so damn hard…

I never finished this entry.  Things changed quickly; I didn’t know how to pick up without leaving out the record of how I felt at that time. 

_____________________________________________

Fast forward to June 2, 2015

Today I received a notice via Facebook of my blog posting from that same day in 2011.  It was an entry of my “Best News Yet” from June 2, 2011 and it was and still is good news.  It was the moment when my MRIs finally came back clear, showing that my muscle tissue was no longer under direct attack by my immune system.  This was an amazing moment in my story with Dermatomyositis (DM). 

http://marenupdate.blogspot.com/2011/06/best-news-yet.html

As I reread the entry, I couldn’t help but feel disappointed that I didn’t have a better report for 30 year old me, who was so optimistic and excited that day.  Immediately though, I redirected to how I was glad I that I didn’t have worse news to give to my past self.  I hate when I struggle with having a bad attitude. 

The DM is no longer killing my tissue, but I am still unaware as to whether I’ll be able to regain strength in those muscles.  There is still inflammation in my body, but I am currently free of any additional disease such as cancer, my organs are healthy and I am alive. 

I would be lying if I said that at 30 I thought that I would feel the way that I do now at 34.  The June ‘11 entry was not long after my initial diagnosis, so I [naively] thought that by now I would have either gained complete control of my health and feel like a million bucks, or I’d be dead (I was banking on the former). 

While ever-grateful to be alive, I never envisioned the way that I feel today.  I didn’t prepare myself for the most likely scenario, which is this in between place of wellness and illness.  It’s the “meh” place.  Believe me, I know that all things considered I am doing really great; but I don’t feel my best, and I want to feel better.  Is that so much to ask?

My rheumatologist listens to me tell her this and I see in her face the “meh” look right back at me.  It’s the “wait and see” face.  The face that says, “You can’t have it all.”  “You can’t take drugs that keep you healthy and have a baby at the same time.”  “This drug will help this, but make this worse.” 

It’s also the face that reminds me that my disease is rare, so patience is key.  More is learned about Myositis every day and if I could win the lottery I would give millions of dollars to The Myositis Association to help make more breakthroughs for the handful of us out there.  That and buy the lot next to us and a golf cart to drive around in and build an animal sanctuary.  You know, regular lottery money things…

Plugging away at physical therapy is a slow process, but one that I am committed to.  It’s hard to have to move so slow that you can’t just get the results that you want right away.  It’s also hard to walk back up my sloped driveway after a short walk though, so I know that “fast” isn’t an option.

My dog Teddy had back surgery a couple months ago.  While I wish that he never had to go through that, I have enjoyed having a PT partner.  It’s nice to have his company and helping him get better is helping me as well.  Plus, we snuggle afterwards, which is a nice perk.

_____________________________________________

June 6, 2015

How are you? The four part question with an 8 part answer…

It’s hard to be around people when you feel like crap, even though you need those people to help lift you up. 

Ask me, “How are you?”  Did I pause?  If so, it’s because you were not specific enough.  “How are you” is a very specific question with an oddly strategic answer that will give the asker coded information to which they just might get an answer.  Why not just answer the question you ask?  Because this is my own highly evolved passive aggressive coping mechanism, that’s why.

How are you doing or how are you feeling?

The answer to how I’m doing will give insight into my feelings about the world, my feelings of gratitude, happiness, internal peacefulness, love of family and friends, the weather, whether or not I have eaten recently, etc.

The answer to how I’m feeling is the direct route to my health.  I hate this one.  It’s why I write this blog, to avoid it.  I like to live in a fairy land where at any given opportunity, I can pretend like my disease isn’t there, or at least be distracted from it.  While there are so many things to be thankful for in life and in my own experience with DM, it still remains the one thing in my life that brings me down, makes me sad, and scares the living shit out of me and there is very little that I can do about it.

I don’t have the ability to just say, “I’m fine,” and move on.  Sorry.  For those of you who struggle with knowing what to say to someone with an illness, I apologize for not making this any easier.  I’m not sure if it’s the “Minnesota Nice” in me or some kind of guilty conscience that makes me feel like I have to answer everything nicely and with an honest answer or what, but I’m here to tell you that I’m doing my best in my own upside-down way.
 
Here comes the top secret coding. 

1.            Question: “How are you doing?”

               Answer: “I’m great!”

               Translation 1A: “I am alive with a wonderful family and friends who love me.  I am filled with gratitude for the life that I live and am smiling because of all the beauty around me and the love in my heart.”

               Translation 1B: “I am not great, but I don’t know you well enough to care if you know that I’m lying to your face or not.”

2.            Question: “How are you feeling?”

               Answer: “I’m great!”
               Translation 2A: “I really am feeling great and couldn’t be happier!”

               Translation 2B: “I may not feel 100%, but I am happily in denial at the moment and it’s really working for me.”

Note: I really am almost always, “great”!  This is no joke!  And those of you who know me know that it only takes me about 5 minutes to have a new best friend, so 1B is reserved for that person standing in line at the checkout, or a waiter at a restaurant.

3.            Question: “How are you feeling?”

               Answer: “I’m alright.”

               Translation 3A: “I’m struggling, but am fighting through it and staying positive.”

               Translation 3B: “I feel like shit and I don’t want to talk about it.”

You know things are bad when…

 4.           Question: “How are you doing?”

               Answer: “I’m alright.  I’m hanging in there.”
               Translation 4A: “Code Red!  Oversharing!  Mayday!  Answering for “feeling” when the question was “doing”!  Abort ship!  Head home immediately to the safety of sweatpants and ice cream!”

               Translation 4B: There is no 4B. 

#4 is a place where I usually am not, but I’m here now.  #4 is sad, depressing state that is hard to shake and I hate being here.  It’s filled with fear of the unknown and fear of the known.  It’s the constant reminder that I’m not in a good place, whether it be by the way I feel or look, or the thing that I tend to struggle with most, which is who I’m not, who I am no longer and who I may never be. 

This is why I have a counselor.  She helps me to stay on my positive path, but she can’t work miracles and sometimes you just need to work through the feelings that come up.  It’s not always easy to be present in the moment. 

When my hands, elbows, face, chest, shoulders and knees are itching and burning, yet hurt too bad to even touch, and I struggle to walk up the stairs at end of day, it makes it hard for me not to worry about things that are in the future and that I cannot control. 

I think about how this is likely 100% due to my current attempt to taper off of my methotrexate to try and have a baby... and I’m only ¼ of the way there.  What if I can’t handle it and need to give up?  How will I feel knowing that if we can’t have a baby, it will be because of me?  How can I make myself be stronger, or fight harder?
I also want to stay here, for a long time.  I want to know how long it takes for my hair to turn all white, and if Brad ever gets bushy old man eyebrows.  Feeling my illness the way that I have been makes me scared.  DM is scary.

Meanwhile, as I write this, it’s a gorgeous spring morning.  The sun is warm and there's a cool breeze the smells like wild phlox and lilacs.  I’m sitting out on my porch with a cup of coffee and my puppies and a little songbird is signing its heart out just over my shoulder.  It makes my heart happy, and now my eyes are full of tears because I am so truly blessed to be in this moment.  

I love my family and I love being part of this world.  I just want to get back to being me, because feeling sad isn’t who I am.  
I respect the process though.  I have struggled before and I will come out from this experience stronger and more resilient just as I did then. 

So today, I enjoy the fresh breeze in my home, snuggles from my pups and love from my husband.  I have an extra cup of the coffee that I love so much, and maybe even indulge in a little ice cream.  Tomorrow is a new day, and one step closer to coming out on the other side.

XO

December Labs, Biopsy Results and a Partridge in a Pear Tree

Hello,

Here we are in December, and 6 weeks out from my last lab work.  I’ll cut right to the chase.

12/4/14 Lab Work

The liver enzymes and CK have returned to normal.  The LDH is mildly elevated; it was normal in October and 659 in July.

ALT – SGPT (8-45 IU/L)  = 25

AST – SGOT (2-40 IU/L)  = 26

CK (29-168 IU/L)           = 67

Aldolase (<7.7 U/L)       = 3.3

LD Total (125-220 IU/L) = 356 (H)

In mid-November, I saw my Dermatologist about my skin.  She took a few scrapes as well as a biopsy of the skin on my decollete.  Only a few stitches, no big deal.  The results came back as steroid-induced acne, which is a bitch.  It is a rash of tiny bumps that sting and hurt, and don’t go away.  

I’m on a new lotion called Clindamycin, which is an antibiotic.  I’m also on another month of twice-daily horse-pill antibiotics.  I’m praying that this finally does the trick, as I’m truly worn out dealing with it.  It does seem to be helping so far, but time will tell. Thank goodness it’s scarf season… although it’s creeping its way up my neck and jawline, so I may need to invest in a nice paper bag at some point.

Since Dermatomyositis and my related medications seem to be making my already delicate skin hyper sensitive, I am having skincare allergy testing done in the New Year.  Hoping that can shed some light on any particular ingredients that may be aggravating my condition.

It’s been a tough couple of months.  The initial fatigue that I felt in October has progressed to extreme weakness in my upper arms and legs.  I have really been struggling with the day to day activities.  I’m working on a new graph, but I think that this has been a trend, that I feel worse in the aftermath of my numbers spiking.  I’m guessing that my Fibro kicks into high gear, and I also think that the LD inflammatory marker may carry much more weight than we originally thought.  This may be our marker to watch.  I’m really looking forward to talking to my Rheumatologist at my next appointment.

We’ll have to see how I feel after the holidays, and if my labs hold before we can continue our conversation about Maybe Baby.  I am starting to feel a little panicked after feeling so awful lately.  I struggle with fears that I’ll never be in a position to be off of my medication for over a year.  We have been referred to a specialist who works with high risk pregnancies and moms with medical conditions.

I am so grateful to spend this holiday season with my darling little family.  We have already enjoyed some truly special time with our extended family and dear friends.  I feel so blessed to have so many wonderful people in my life… pups and kitties, too! 

No matter what struggles we face, there is joy and just so much to be thankful for each and every day.  A grateful life is lived by choice and with intent.  It doesn’t mean that I am not allowed to feel sad, or get upset, but that I remember to return to a place of peace and gratefulness each day.  This isn’t always easy, but it’s worth it… all the best things are!

Thank you for your continued support and love.  Wishing you and yours peace, health and happiness this holiday season and in the New Year!

Maren

P.S.  I recently helped Ben’s Friends by making a video to thank our donors!  

It’s my big-screen debut … and I wouldn’t mind it being the last, but I’m so glad to help out an organization that has meant so much to me!  

If you would like to donate to Ben’s Friends Patient Communities, click here!

Hello! 

Late as usual, so we’re back within par for my blogging habits.  Grab a cup of coffee, this is a long one.

April’s labs were all very positive although I had been struggling in the beginning of the year.  Fast forward to June, I was ecstatic – I felt the best that I have in 4 years!  I felt better than I have in longer than I can truly remember.  Awake, alert, in less pain, more energy and best of all, I felt more alive.  These were all things that I would hope to feel with the great lab results like I had in April.

Immediately I start thinking of Maybe Baby.  Should I begin tapering off my medications so that we can try?  This is what we have been waiting for, right?  After some soul searching and a discussion with my Rheumatologist, we decided to let me enjoy what it feels like to feel good for the summer.  My rheumatologist also said that she’d like to follow my labs a little more while I felt “good” so that we can learn more from them if they spike again.  You may remember that aside from my inflammation that showed in my MRIs and muscle biopsy, the common inflammation markers were not very clear within my labwork. 

Brad and I both felt good about this decision and wasted no time enjoying the summer and taking advantage of the gift that we had been given.  Well, June and July were a huge learning experience for me, full of important reminders and a few slaps back to reality.  While I did feel really great, that this is all relative for a person like me.  This was something that after four years of learning to pace and care for myself was quickly forgotten in a month or two of excitement.  For example, I am used to getting about 10-20 minutes of activity in before I know that I need to stop and take a break, to avoid a flare.  “Feel-great” Maren decided that she felt good enough to skip breaks and after two months of just powering through is now back to where she started. 

Ugh!!!  I brought it on myself.  After months, years of not being able to just do things when I want to do them, I was chomping at the bit to get all kinds of projects done.  I wanted to finally walk my dogs every day, get outside, see my friends and family.  After not having an appetite for months, I wanted to eat all my favorite things, drink beer and just get out and have fun.  The most valuable lesson here is that no matter how great you may feel, “Everything in Moderation” is truly a statement to live by, and for a person like me this rule cannot be broken. 

August brings another [hopefully the last] small foot surgery to remove the wart from hell.

September arrives and I am right back where I was at the beginning of 2014.  Son of a!!

At my appointment in late July, I was just starting to feel the effects of my summer bender.  My lab results came back with an elevated LDH. However, Dr. Grandits said that she had been seeing issues with this test and wanted me to recheck just to be sure. 

If the LDH comes back high again, this is actually something to be positive about.  Since my DM markers haven’t always been right on, it’s been difficult to read my labs, and predict or anticipate any flares.  If the LDH is high again, this may be our “flare” marker to watch! 

Late July Lab Work: 
No liver, kidney or blood cell count abnormalities.  Muscle enzymes are normal except the LDH returned quite high. 

Due to a paperwork error, I actually never got my lab results in time to get rechecked before SURPRISE, you have Lyme Disease!  Yes, you read that correctly!  After a weekend of being sick as a dog with a sore neck and stiff, sore knees to boot, I crossed my leg and saw the tell-tale “Bulls-eye” mark on my calf.  Apparently the marking can be seen within a month of being bit.  The symptoms that I was feeling were in line with the 3-4 week marker. 

I did need to stop taking my MTX for 2 weeks while the Doxycycline did it’s job tackling the Lymes. 

Lyme Disease "Bulls-Eye" marking please forgive my hairy legs

I was actually relieved that it was Lyme Disease, since a common complication with myositis is Dysphagia, which is difficulty swallowing due to a lack of muscle strength in the throat and neck.  This is something that can really take a turn for the worse and in severe cases, even create a need for a feeding tube.  Scary stuff.  The Myositis Association reports that dysphagia occurs in nearly 1/3 of myositis patients.

I had already been on mega antibiotics for 2 weeks (prior to going to the ER) to help control my perioral dermatitis (not eczema as previously diagnosed), so I believe this is why the hospital results came back clear.  WooHoo!  What did not come back in the clear was my CRP, or C-Reactive Protein, which was rather high.

9/28 ER Lab Work:

CRP (0.0 - 0.8 mg/dL)     =1.4

About the antibiotics that I was already on continue to be on…

My skin condition has taken a turn for the worse, and the Triamcinlone cream that I usually use on my hands, can no longer be used on my chest or behind my ears because it’s beginning to break down my skin.  I have tried a million different creams for the area around my mouth and while they may work for a little while, the little red, itchy bumps always return. 

So, for an entire month (I’m halfway there) I am on antibiotics and I am to only use Free & ClearShampoo and Conditioner and Vanicream Soap for my hair and body.  Free & Clear Hair Gel if I need to style my hair.  I already use ultra-sensitive Cerave and Cetaphil on my face.  Also, try to use minimal makeup.  For any rashes that appear from the chest up, I am using Sodium Sulfacetamide Lotion, and yes, it is made with sulfur it does smell like farts.

Perioral Dermatitis

Folliculitis

These photos are mortifying, however I know that there are quite a few readers of this blog who also have dermatomyositis, and if they make someone else feel better about their skin condition, then that is what is most important. 

The new cream wiped out the dermatitis on my face right away, although it got much worse before it got better.  Then, it tackled the area behind my ear, and now it’s working on my chest, which I want to rip off right now because it itches so badly.  Thank God I work from home and can be a hermit hiding in sweatpants rather than scare people off with my living Halloween costume.  Hoping that this crap is on it’s way out!

So here we are, October 30^th. Other than my itchy skin, I have been feeling pretty good!  While my muscles have been weak, I have not been painful or sore.  I get tired easily, but I’m not in pain.  This is great for me!  

I saw my rheumatologist last week and left with some exciting news for my husband.  Dr. Grandits suggested that we try reducing my methotrexate (MTX)!  Now, this would be a very slow process of a 1 pill reduction of the regular 10 for the 3-6 months, then reduce by one more pill for 3-6 months, etc.  (My pharmacist goofed and gave me the pill form MTX last time and I was actually excited.  If I don’t have to take that damn shot, I’m a happy camper.)   Anyway, I went home and talked to Brad about it, and we decided to do it!  That would be one step closer to Maybe Baby.  I started to feel excited, like I was really helping us move forward to that time.

Today however, I got my lab results and am feeling a little defeated.  I haven’t had labs that looked like this in a while, and it has me on edge.

10/24 Lab Work: 

The labs show the muscle enzymes are elevated, the CK, aldolase and AST.  Surprisingly the LDH is normal, it has always been high in the past.  The muscle enzyme elevation may be related to the infection you had in the interim.  Lyme infection can cause myositis.  Will see if this corrects.  I would continue taking the methotrexate for now.  Other labs show a mild increase in the inflammation markers (sedimentation rate, c-reactive protein).  The blood cell counts are normal.  The Lyme testing is negative.  I would suggest rechecking the muscle enzymes in 6 weeks.

AST – SGOT (2-40 IU/L   = 50 (H)

CK (29-168 IU/L)               = 1427 (H)

Aldolase (<7.7 U/L)         = 11.2 (H)

Lyme Screen                      = Negative

Sedimentation Rate
(<22 mm/hr)                      = 22 (H)

CRP (<0.50 mg/dl)            = 0.59 (H

So, where do we go from here?  I guess just get to the next lab appointment in 6 weeks to see what is happening in my body.  Hold my head up and keep going.  Pray for strength so that my fears don’t interfere with the amazing life that is mine each day. 

Kiss my dogs and enjoy being able to spend my days working with them snuggled in by my side.  Hug my husband, my best friend and partner in life, my biggest supporter.  Dress up like Babe the Blue Ox this weekend and have fun with my friends.  And, not forget to take my rests when I need them.  J

Will update in 6 weeks when the new labs are in. 

XO, Maren

Spring Update - Super Late!

Hello there,

So, the last time I checked in with lab work, etc., I was convinced that taking my weekly Methotrexate (MTX) injection with ice cream was going to solve all my problems (not really, but that is my incredibly brief synopsis from the last post).  Well the ice cream trick didn’t make it to a second try, I also quickly remembered why I took the shot at night in the first place, because sometimes it makes me feel sick which is something I would rather experience at the end of the day.

Then, I was feeling sad about the figurative use of the word “orphan”.  I have been around and around with where I’m at with my Dermatomyositis.  It’s this crazy-ass disease that I loathe, yet I’m thankful for the lessons that it has taught me, and the positive changes that have come into my life because of it.  I’m a different person than I was 4 years ago.  My life is so different, but I’m better because of it. 

So without further ado, my recent lab work and all health status.  I’ll get into the nitty gritty after getting the numbers out.

4/29/14

Labs are good.  No liver, kidney or blood cell count abnormalities. 

LDH is now normal after being abnormal since 2010.

Anti-nuclear antibody has increased to 1:640

Thyroid and B12 are both normal.

No systemic inflammation detected.

Blood serum saved to test remaining antibodies.

5/5/14

Remaining antibodies all normal.

5/14/14

MRI report for left proximal arm received. 

No inflammation found.

Previous cyst seen at the subscapularis tendon of left shoulder has shrunk (15 x 6 mm to 2 x 2 mm)

5/17/14

MRI report for cervical spine received.

There is an area of mild degenerative change at the C6-C7 disc caused by degeneration.  There is no pinching of the spinal cord or exiting nerves.

No abnormal signal in the spinal cord suggesting an abnormal lesion such a Multiple Sclerosis (MS).  

If symptoms continue to occur, it’s recommended that I see a neurologist.

The first couple of results are from my regular 3 month check-up with my Rheumatologist.  2014 got off to a rough start and mid-February through mid-May was the worst.  For the first time in my experience with DM, I had intense weakness that came on suddenly and nearly caused me to fall.  Thankfully, I was at home for the majority of these incidences, and when out and about I either had a shopping cart to slump over, or my husband to act as my cane. 

I also noticed increased weakness in my upper arms and thighs, a trademark DM flare indicator.  I struggled with stairs, with drying my hair, folding laundry; the usual suspects.

Both my regular doctor and rheumatologist were very concerned about this, but no one more than me.  As a moderator for the myositis group over at Ben’sFriends, as well as a member of several myositis support groups on Facebook, I am painfully aware of the struggles that my fellow DM patients face.   I know that I am one of the lucky ones. 

After checking a few extra labs that may explain the weakness, my rheumatologist ordered an MRI to check my arm for inflammation.  She also ordered an MRI of my spine to rule out a pinch, inflammation or any lesions (associated with MS) on the spinal cord.  The concern was that there could either be some overlap (MS or other connective tissue disease).  Since my last MRI had been 6 months ago, with such a rapid decrease in strength, the culprit could be a demyelinating lesion or transverse myelitis, both of which can cause a very rapid deterioration of the spinal cord, resulting in sudden loss of strength as I had been experiencing.  Thankfully, it appears that my symptoms were due to neither.

Thank God.

I can’t quite explain what has been happening with my weakness, although I know that I am not alone, as many of my friends within my Myositis support groups go through these flares as well.  My best guess is that after being sick for so long, that my muscles have atrophied and what I have been feeling as “DM weakness”, is really just weakness from being physically weak. 

I asked my Rheumatologist if I would ever get my strength back.  She said that it is all dependent on how badly the muscle cells were damaged when inflamed.  Some patients will never gain back any strength greater than when the myositis was flared.  Some patients will go on and build back muscle and get stronger.  Other patients may gain some strength back, but almost be a combination of the two previous examples, if their damaged cells are surrounded by healthy cells that can rebuild and grow.  Either way they road to recovery is a slow and often frustrating one. 

Both of my doctors have once again recommended that I begin a swim therapy class and some type of core strengthening program and I’m ready to take the plunge (sorry for the terrible pun, I honestly couldn’t think of anything else to say).  It’s been so hard to get going.  

I have been so weak that it has been beyond discouraging to get moving.  It’s hard to feel the momentum of your activity when you can only make it half a block and back and then need to lay down.  Baby steps though!  I’m ready to make a change and get back to a healthy place physically.  Especially since my labs tell me that I’m good to go!

In other efforts to get myself to a healthy place, I have been looking into the Auto-Immune Protocol (AIP) Diet.  I’ll dive into this a little further after reading my first book, but wanted to put that out there.  More on this to come in an upcoming update.

Lastly, and seriously least, my skin. 

The little bumps that I previously mentioned delightfully spread to my chest, jawline, back of neck and side of mouth.  It’s called folliculitis and it sucks.  Well, apparently the part by my mouth is called atopic dermatitis(aka eczema) and it also sucks. 

These skin conditions are often caused by a weakened immune system and inflammatory skin conditions, to which DM fits the bill for both. 

 

• Previously, I was using a combination of Triamcinlone Acetonide Cream USP 0.1% (hands), and Cloderm Cream 0.1% + Desonide Cream 0.05% for the spots on my face and chest. 

• Now, when I notice symptoms I’m using the Triamcinlone for my hands, arms, chest, jawline and neck.  For all of the previously mentioned except the hands and arms, I first apply Clindamycin Phosphate Topical Solution USP 1% to fight off any possible bacteria.  The application is for one week, twice daily and it’s gone on the last day.  I’m also using the Clindamycin Phosphate wash for the area by my mouth followed by Protopic Ointment 0.1%, same schedule.  For the hands and arms, I just apply the Triamcinlone as needed.

The creams and wash do seem to help, but then it’s only a matter of days or a week before the signs return and the application regimen begins once again.  I’m not going to lie; I know that it could be so much worse, but this skin stuff really stresses me out.  I feel so vain.  I guess my skin’s appearance is more important to me than I realized. 

One thing that has helped is to spend time with people who know what’s going on with me, so I don’t feel like I have to explain.  I suppose this is something that I have learned about myself in general with my health.  It’s so much easier to know that the people around you understand and support you.

Oh crap.  My foot. 

The past 6 months have included 5 laser treatments, a small surgery, 2 shots of Bleomycin (a chemo drug), a “burn & scrape”, and most recently a few rounds of freezing.  My dermatologist thinks that it’s finally gone, but wanted to be sure, so he froze it and I nearly flew off the table.  My foot is SO tender, since we’ve gotten down to the very bottom of this beast, I nearly karate-kicked him in the face last week when he hit it with the cold stuff.  I so hope that jerk (my wart, not my dermatologist) is gone.  I’m not sure I can take any more hits on this flipper of mine. 

I just had another appointment last month (July) but I am still waiting on a copy of my labs.  I’ll post that update in the next week or so!  

Have a wonderful week!
Maren