Wednesday, December 1, 2010

Tis the season to be Jolly! And by golly I will!

Hi there folks!!

Wow - Tis the season already. Can you believe it. Life happens quickly.

If you have read my blog for a while, you may recall my holidays last year were not so great, but this year I'm on a quest...a Christmas Quest for fun

And let me just say, that so far so good.

I am in such a better place mentally and emotionally than I was last year. The shock and fear of the diagnosis has subsided, and I think the understanding and acceptance of the diagnosis has finally been absorbed. Sometimes I don't think the finality of what this all means has completely sunk in - but with acceptance comes peace and I am at peace. 

The anxiety caused by the fear, which in turn caused depression is gone and has been replaced with a new outlook and understanding of my life as I now know it. I am learning to accept, not only the disease - but all of the aspects that it brings along with it. 

The Big S - and chronic disease has a ripple affect and touches everyone and everything in your life - and I didn't know how to cope and deal with that. I had expectations of how I thought people should act when finding out or expected that people should react the way I would have... and I understand and accept that I cannot have any expectations of anyone with regard to this journey - only of myself - as I am the one walking it and therefore only I know how it feels, how I feel, how it affects me and how it has changed my life. 

Not that I am not entitled to my feelings, which I am - which is why I blog.

This is my place to express how I feel, share what I feel, speak what I feel.  Hopefully without judgement - but... as in life, nothing is really without judgement. We all do it - even without meaning to, but we do. It's when we judge without empathy or understanding that trouble starts. There is always perception and interpretation, and when written word is open to interpretation - the reader can pass judgement or interpret however they feel, however it will make them feel better or allow them feel empowered. Look at Waco. He was a "Christian" who chose to interpret the Bible in his own twisted way. Or politics.. left - right... Hell, CNN vs Fox.
So judgement and interpretation happens.....and that includes this blog - but the purpose of this blog and my reasons for writing are to create a safe place, hopefully free of judgement - to express how I feel. In the moment. Albeit, good-bad-or ugly.

In the moment I write and yep, in that moment I may want to take my ball and go home. Be envious that Marcia gets more attention than I do or Whine Nelly Olson is a big meanie...but it is how I feel. In the moment and not all moments are good.

Some moments I do get jealous of the energy my friends have, or that people are able to take time off because they are sick with a cold - and in some moments I may feel that is a luxury I wish I had... but that is how I feel and I am entitled to those matter what they are or how silly they may sound - that is the reality of my world with the Big S.

I would love to say that I live my life Jackie-O style, everyday with grace and dignity - but I don't. I falter. I get envious. I sulk. and then I bounce back again. I am a work in progress, as I always say.

I am learning to live a new life everyday, as my life changes everyday since my symptoms and abilities do. That is my reality and with those changes come the ups and downs of how I feel .... and I want to be real when I share them, as I don't want anyone else who may feel the same to EVER feel alone in them.

It is OK to feel...... IT IS OKAY TO FEEL!

And the best part is everyday, in those feelings, a lesson learned... to bring with you in your future journeys.

I am alone in my journey in my body - but my soul is open and full. At least I hope. I strive for that. To be true and to learn - to see things from all perspectives and understand, accept, grow.....enjoy, live, be - love.

Life is great and amazing. It may not always happen the way we wish, but we are all just so lucky it happens!! Even with the Big S.

Life is good and I am SO ready for the holiday season. Bring it on!

Santa Claus is coming to town!!!

Saturday, November 27, 2010

Safe Place

If you have read my previous posts you see I sometimes say, it feels like there is "No Safe Place" with Scleroderma....

That one secure, safe place. A place that is stable and we know won't change (like our disease does so often). Where we don't have to wonder or worry. Where we can share how we REALLY feel? With whom? How much? How often? Can we be real or should be stay PC? Can we whine or do we lose our grace and dignity? Where? What? When? How often? With whom? Will they leave, get burnt out, judge, change, not be able to handle it? Label us?.....All those things and more.

Well, I was with my friend when she said...Stop. Pull over, I need to take a picture!!

And this is the pic:

I just had to share. It made me laugh. I LOVE it!

I haven't blogged in a little while. I have been feeling pretty good and getting into the spirit of the season.

I promise I will log on and get caught up....but for now, I just wanted to share a little autoimmune humor with you.

Hoping you are reading this with a smile on your face and in your heart!



The Bird is the Word!


Peace and Love

Monday, November 8, 2010

Rubberband Arms - Flare like you just dont care

Hi All ~

I have what I affectionately call "rubber band arms" today.

Basically my arms feel guessed it. Rubber bands.

No strength. Weak. Shaky.

Basically the analogy I use is; what you feel like after you have worked out hard core for too long, and your arms feel like rubber bands and you can barely lift them or use them because your muscles are shot.

THAT is what my arms feel like today. I dislike it very much. It has been a while since I have gotten an episode/flare this bad. To write this this very word has taken me 25 mins because I keep resting my arms because they are so shaky. It feels like a monumental task to life my arms using my shoulders - not as bad to lift my wrists.

I just wanted to post about it real quick because it IS a symptom I get and when I have posted about it on other sites, many people state they do too - Although it is never mentioned in detail in any literature.

I guess its bundled under "Muscle Weakness" - How bout puttin it under, hard to lift paper?

Do any of you get this?

I have that low grade flu feeling with swollen glands and I am EXHAUSTED... as in I took a nap yesterday and I never take naps!!

So perhaps this is a flare up? Was going to get a steroid shot, but my waist band said no (I'm at the point I have gained so much weight that when I bend over, my underwear is so tight it cuts of the circulation to my head! : ) Uggg

Anyway - I just took it easy today, got nothing done on my To-Do list and decided to post a quick blog about it.

I never knew this was a Big S thing until I posted about it, so I want to make sure I give it an entry.

Take Care everyone.

Have a rubber band free night!!

Peace & Love ~


Sunday, November 7, 2010

MR-I hate them..................

I have an MRI tomorrow for my ear. Yuk!

I hate MRIs - I am claustrophobic now (apparently) and once I get under the damn thing I have to itch, must move my arms, have a cramp, need to pee.... boy does my brain do a number on me.

I get that it is mind over matter and I am in control, but I think there is a Xanax with my name on it for tomorrow morning.

I even go to the open MRI and I am this bad. Seriously!

I had to get an MRI of the brain last year, so I went to the open MRI and found that it is open - but they strap your head to the table in this mask "Silence of the Lambs" style and it freaked me out.

I couldn't do it. The tech kept telling me how long it was going to be, could I sit still that long, I had to keep my head still and when I asked how long, she would not say, telling me it was better not to know so it would go faster............ and she was a tad gruff while saying it all, but I went to the table like a good girl and lay down. She told me to put the ear plugs in and put a cloth on my face, but I told her that those to additional confining elements would just make me feel worse. She didn't listen, as she told me she knew best - so I kept the plugs in and cloth on and wow.

I think I made it about maybe 7 minutes before I was dones-ville. The tech asked me if I wanted a "sitter" with me to hold my hand, and I said no. I asked how much longer and she replied she wasn't going to tell me and I could get through it to which I replied,  I just think I need to be done for the day and come back with an anti-anxiety med on board. But she kept me there, and my flight or fight kept increasing - and she kept telling me I know you can do this and I would say, no I don't think I can.. and she said No, you will get through this and can do it and by that time I was in full blown panic mode and yelled back "What I know is I want to get the hell of this table so let me out now" to which she responded by not so nicely letting me out and off the table, where I had to then proceed and make the walk of shame out of the building. Memories.....

Well, I did go back and requested a different tech with xanax on board, I made sure my head was in a good place and I did it! I was so proud that the girls up front (who were witness to my previous walk of shame) actually gave me a standing ovation and hugs. Ahhh...yes. I know how to make friends and have a good time.

Well, I had to pick up contrast from the same imaging center last week for my CT scan, and I did not see any of the old crew that helped me through the MRI last time, so we will see. Wish me luck.

I am going to get a good nights sleep and pop my xanax around 7:00 for my 8:00 MRI.

Send me good, calming and relaxing vibes.

Mind over matter - Mind over matter - Mind over matter.

AS always, I will keep you posted.

Good Night!

MRI Machine Broken - Thank the heavens above. Was not ready for it......Ug.
Rescheduled to Monday the 15th at 12:30!!

Just Do it

Like Nike, right?

Just do it......That's what I feel like sometimes with the Big S.

Even though it almost always feels like you have a low grade temp, you just do it.

Even though it almost always feels like you have a low grade, just under the surface flu with ever swollen glands - you just do it.

Even though you always feel tired, fatigued, lethargic - you pick up your boot straps and just do it.

Even though your hands hurt, will not get warm to save your life and your muscles are tired or sore - you just do it.

That's the deal with Auto-Immune disease. You just do it, because you have to.

Break on through to the other side.....Push it real good..... Just do it.

If you always feel a little sick, when do you give yourself permission to just be?

I had a friend that was sick the last few weeks, and we had plans a few times and she loved herself enough to put herself first and say NO to me.

It made me realize that I have the right to do that as well. Be selfish and put myself first, but if I am always busy "pushing through" what I feel like to live a normal productive life, when is it my turn to say no?

If you have read my entire blog, you already know that I have my Neapolitan theory. The three levels of my day. If I have plans in the evening, then I know I need to rest in the afternoon so I have the energy and stamina to go out. Vice Versa for morning, afternoon and evening. I can't seem to go-go-go all day long anymore.

But - I do go-go when I can. I "Just do it" a lot. Actually almost forgetting my Neapolitan theory or if not forgetting it, not accepting it and allowing myself to feel mad, envious or loss when I am not able to take part in the activities that may happen later.

For a while there I was helping a friend organize a house. We would leave in the morning and be gone about 5 hours, but during those 4.5 hours in the home, we were organizing. Well, when I would get home, I was beat. I mean whooped. I could not have gone out even if you'da given me a ticket to the Oscars. I was tired, achey, swollen and done.

But - I found myself - instead of being proud of a job well done, or having a feeling of accomplishment for whatever project we finished that day - I found myself envious that my friend, once home and showered, was back out with friends having fun (as she should). 

It made me so sad... and envious and made me grieve another loss I hadn't realized before. I almost felt pouty, like a three year old - "well, damn - If I know there was fun to be had later, I wouldn't of done the damn house". 

It is something I have/had to acknowledge and then accept. But man is acceptance a hard pill to swallow some time. I try to really put most everything into perspective now adays and then accept what is or what is to be. As hard as that is sometimes. 

With an Auto-Immune disease, your body never turns off. Your body is fighting the good fight all day long. Your little soldiers are always in action which is why we feel tired. Just as when someone without an Auto-immune disease starts to get a cold, and their little soldier bolt into action. 

It's the nature of the beast that I will be more tired than my friends and family. That I will always be pushing through what feels like a low grade flu every day so that I can work and play with them. 

And after work or play, my fuel is gone. My soldiers were working on the inside all day and I was working on the outside and together, whatever energy source I had that day is used up when I get home. It is what it is and I need to accept that without jealousy, anger or envy. 

When my friend was sick, I must admit - Part of me, the part that is still processing all that has happened, is still happening and what happenings are to come with this disease - That part of me went to a very ugly jealous place and had a fleeting thought..... Why can't you push through like I do every day. What luxury do you have that allows you to say, Can't - Sick, yet I push through the flu, aches, fatigue, malaise, swollen glands - all of it every day. 

I guess that luxury is self love and selfishness. Not in the derogatory sense of the word, but the true Webster meaning. To care about ones self first. Sometimes you need to be selfish. 

It's been an odd strange few weeks, and in doing a lot of reflection and acceptance of things -  I realized that it is okay to be selfish sometimes too with this disease. 

I guess in my head and heart, I have been trying to prove to myself to others since I got "sick" - I can do it. But at what expense? So, I am the one who sits at home swollen and achey, when I should be at a BBQ. I don't know the answer to that. I am learning as I go.

It's not in my nature to be selfish though. It is a foreign feeling for me. I have always been the giver. The can't so no girl. Sure I'll help or wow they sound sad - I better do something, make soup, send a card, drive over - make sure there okay. I'll take care of the homeless, bullied, anxious, sick, but I won't take care of myself?

I think I will always be that girl, but I think I need to tone it down a tad. No one really cares if I can "do it" or if and when I "push through it". People forget. You don't look sick, so no one thinks to check to see if your okay or understand if you can't make it. It's human nature I guess. Just as it is human nature to be envious sometimes... but I am learning to accept things as they are without envy. 

I am not going to be the life of the party all of the time anymore, I am not going to be in the popular crowd anymore. Being sick is NOT popular. It's not fun having to accommodate. I get it. And instead of getting mad at myself, or sad about it or envy what is - I am learning to accept things as they are. 

I will do what I can, when I can - and there are times when I will still "push through" and "just do it" - and I will do this without expecting a "Mighty Martyr" award or Gold Star. 

I will do it because I choose to, without regard to acknowledgement and with knowing that in doing so, I may be sacrificing some other stuff later that day. And its okay.

I still CAN - and that is a blessing. I have a great husband and a super kid at home, and if I come home and can;t get back up off the couch, then at least I am in good company - and IF there is something I need or WANT to do later that night, I can say no. I can follow my own Neapolitan theory and make sure whatever I schedule, it will not interfere with what I want to do later.

Pushing through and just doing it every day is exhausting. And for a few weeks I had a pitty party about it. I needed to go to a place of acceptance and mean it... and I think I have.

But as I always say, I am a work in progress and Scleroderma is a practice - Always changing and forever readjusting. And that's okay. Because this IS my life. And I am so happy to live it!!

Life is Good!!

Monday, November 1, 2010

ENT Visit

Hello and Happy Day after Halloween!

Just an update. It may be short and sweet, we will see.

The Halloween Fairy seems to have given me a bladder infection with all the bells and whistles (burning, fever and chills - Havent had one since my 20's) and My hands have been giving me a run for my money these past few weeks, so typing is a tad more difficult than usual. I have stay puff marshmallow fingers with Mickey Mouse I keep hitting the wrong letters. But, hey - that's what spell check is for, so onward.....

Well, went to the specialist ENT so I could get some information straight from the horses mouth with regard to my ear pain and vertigo.

My Rheum had eluded to an Auto-immune inner ear issue, which I of course would be prone to with Scleroderma, so to be sure I decided to bite the bullet and go to the ENT.

Let me start by saying it was on Friday, before Halloween so the staff was dressed up in costume garb. They were all lovely, the office was brand new and just gorgeous and I was quite content in my little room waiting for the doctor.

I was reading the Ear Poster on the wall trying to find the crystal thingy's everyone says dislodges and causes vertigo when the door opened and some young good looking kid in a red Cardinals jersey walked in. Well, I turn around, see him and think he walked into my room by mistake until he extended his hand and said "I'm Doctor *** - Nice to meet you"

Swear didn't even hear the guys name (fore-shadowing) because I was so shocked at; A: How young he looked in that red jersey and B: How cute this guy was ....

After I stuttered my name and managed to shake his hand, I brought myself back to reality to get the scoop on this Vertigo garbage I hope to never get again.

Previous to being brought into my little exam room, I had to take a hearing test. It was kind of neat. I have never done that before. I sat in this little glass booth with earphones on and had to click this Jeopardy style clicker every time I heard a beep.......

Well, Dr. Cutie broke the news that (aforementioned foreshadowing revealed) I evidently tanked the low frequency hearing test in my right ear. The same ear that causes me the pain, fullness and one I want to shove a pencil into.

Apparently the loss of low frequency hearing in my right ear is due to nerve damage/death. Good to know...... but as he went on to ear fullness, loss of hearing, nerve damage and episodes of vertigo painted a pretty clear familiar picture to him.

He said I almost text book described an ear disorder called Menierre's.

When I told him my witty little self created term "Verg-igo" - of always feeling on the "Verge" of vertigo for about 2-3 days after a vertigo episode, along with the subtle nausea and dizziness post episode and the episode itself lasting about an hour or two where I needed to hold on to walls and furniture to stand upright - He said Bingo!

My history and his findings pretty much suggested this Menierres thing, but the condition itself is one of exclusion - so before he can "officially" diagnose it, he must exclude other causes of the nerve damage, hearing loss and vertigo such as inner ear tumor, inner ear pathology amongst a few other things I have forgotten. He said the other concerns are pretty rare and he does not think he will find any pathology, but that protocol suggested that I need to get an MRI of my ear to rule out any pathology and balance testing.

When I asked if this Menierres is an Auto-immune inner ear disease as suggested by the rheumy, he said not in and of itself - however, auto-immune disease CAN cause it. The condition itself is of course incurable and the cause is unknown (Story of my life!) but there are medications that can prevent further future episodes of vertigo and hope halt further hearing loss.

I guess a low salt diet is prescribed (Oh No............) and a water pill is given, along with something else I can't remember (Sorry) to reduce fluid over load in the ear which they feel is the cause of the pressure on the nerve and cause of vertigo.

I asked about the crystals the doc mentioned last year and everyone talks about and he just shook his head saying that Benign Vertigo only lasts a few second to minutes and Never over 15 minutes - so any vertigo that lasts longer than 15 minutes and does not resolve with position change is considered conditional and a pathology should be sought - so, we are seeking.

I get the MRI done on the 3rd of November (so not looking forward to that -xanax here I come) and I get the balance testing done on the 12th.

As always I will keep you posted.

I must admit though, that after leaving the ENT office and the aura of cuteness wore off, I went through an array of emotions. I thought I had already went through all of my stages, but not that day because I was angry!

I was angry and needed to vent so I called my friend and told her the news.... and it's like old hat now. I mean, what else. It's almost embarrassing. I feel as if people just pacify me now - almost as if its "Now What" or "What this time" - eye roll....

I give this huge speech that I am angry, and the Big S has now allowed my body to gobble up my ear nerve and it was like old news because there is Always something. We went from my news, to oh and subject change.

I know my friend loves me, at least I hope? I think? Hell, I don't know - Nothing is safe with this stupid disease and I already lost one friend over it. My biggest fear is talking about everything I feel, lost, fear, and the things that are always changing. I don't know what is off limits. How much is too much.

I'm sure having a sick friend gets old. I'm sure having to hear about the latest Whoa gets old. I'm sure it can be annoying - but its not like every single second of every waking hour I talk about it.... but there are times when I need to talk, to vent and be angry that some invisible force is stealing the life from each of my organs. Eating me up on the inside. Gobbling my bladder, intestine, liver, nerve sheath and now my ear and hearing and I am mad about it! And scared about it sometimes.... and I want to know there is a place safe enough that no matter how many new things, symptoms, findings, diagnosis pop up - I can talk about it without fear. Fear of more loss. Of losing another friend. My credibility.

After I spoke with my friend, I must have gotten sad because I started to cry about yet another loss I have to absorb, so I called my sister - who reminded me that this continued laundry list of new diagnosis and new findings was the nature of THIS disease, and anyone who loves me knows that....

I felt a little better, but I know it gets old for others. I just hope that they in turn try to understand - If it gets old and annoying for you, think about how I feel!! Its happening to me. Ba Da Bum...Ching!

Who knows... Like I always try to say - There is a lesson in everything and I am finding Karma in a lot of things too. I had a neighbor who had Chronic Fatigue Syndrome. Stay at home mom and every week she had a new infection and was always calling with "something" and I must admit - I'm sure I rolled my eyes a few times. I'm sure I pacified her a few times and probably even "missed" her call every once in a while. Karma. It'll find ya!

I really try hard now to try see things from every perspective and I am working on letting things go and accepting things without expectations. I have always considered myself a compassionate person and always felt I empathized with others.... but my perspectives were probably more one sided. Mine...

Now instead of rushing to judgement, I try to understand the other side and accept/absorb things without getting hurt. What a lesson and learning curve.

I have always tried to see the why behind the what.... I mean people don't start out saying, Boy I want to be a homeless addict when I grow up or Wow, you know what I think I want for my life plan? Teenage pregnancy.

There is a reason behind what people do, what they become. The Why behind the What. But I am trying to take that philosophy a step further. A step more intimate and close to home.

Anyway - Back to my damn dead ear. Well, the hearing I have lost is gone for good. Bye Bye Birdy. I could have continued progressive hearing loss or it could stay unchanged. That remains to be seen, and if it is Menierres - the meds will help. The good news is, that the degree of hearing loss will never cause a complete deafness. There will be options of hearing aids or cochlear implants if things progress that far. So that is promising!

With regard to if I knew I had lost hearing? Good Question. Well, I know my hubby has been making fun of me for the past couple years with how loud I watch the TV. Always asking if I was sharing our HBO with the neighbors. He also teased me about talking really loud on the cell phone.

So who knows......I guess maybe I have but it just didn't register?

Maybe nagging and whining will turn into low frequency, then I won't have to hear them anymore...

Anyway - not to be be anti-climactic  - but my hands are killing me, so I better sign off for now.

Be Well!!

Love ~


CT Scan Results!

I think I had mentioned in one of my post about the need to get my 6 month surveillance CT scan of abdomen, pelvis and chest.

Well, I did it and the results are in. Drum roll please...........................

CT Chest:
I don't have the official results from the chest yet, but my lung nodule was visualized on my abdominal CT and showed the nodule size, shape and context have not changed - so that's good news!

CT Abdomen/Pelvis:
Bladder: There is still bladder wall thickening (Scleroderma can cause "Thickening" or scar tissue anywhere)
Liver: The liver is still enlarged, which MD feels is "autoimmune" related (Sclero can cause PBC of liver)
Spleen: The spleen is normal size - Wahoo!!!
and something new......

The sigmoid colon demonstrates scattered diverticula; Impression:
Sigmoid Diverticulosis

So it seems that perhaps the Big S has made it's way "officially" into my sigmoid colon. I know the MD had thought perhaps that was happening, but to see it in ink on an official report is kind of a bummer!

Guess what that means... You guessed it!

The dreaded Colonoscopy I have been talking about putting off - I think that bad boy may come to fruition sooner than I had anticipated. Merry Christmas!

This does kind of clear up the mystery behind my Koo Koo Clock episodes. I think the cramping with bowel movement and vomiting may in fact be due to the diverticuli? Who knew.... I didn't but I guess I do now.

I mean - I don't know "Officially" yet, as I have not been to the GI or had the Colo, but I saw the impression on the CT report, which of course got my interest peaking so I researched it (googled Scleroderma and Diverticulosis) and found there IS a correlation of Diverticulosis and the Big S.

Apparently "Large Mouth Diverticuli" are associated with Scleroderma in the Sigmoid Colon.

Hmmmm - So if it walks like a duck?

We will see - Guess I am in the Market for a GI doctor on this end of town.

As always - I will keep you posted.

Love to all ~

Saturday, October 23, 2010

Blah Blah Blah Blog.........

It feels like there might be something in my teeth???
Blah Blah Blog - Just random stuff.

Bringing back the SNL - "Deep Thoughts" by Sclerodharma

Why and Self blame do not mix:
Why am I breathing so it the sclero?
No, I'm probably just out of shape, deconditioned, fat, gained to much weight - It's just me - my fault.
Why did I gain the weight, the steroids from the sclero?
And the beat goes on........

Losing Friends Sucks:
Getting diagnosed, then realizing your friendships weren't as strong as you thought they were. It sucks and it's lonely. The Big S itself is lonely. There is no safe place with Sclero.

Sclero; Always changing.
Consistently inconsistent.
Limited yet systemic and can affect anything, at anytime, anyway it wants.

This guy really one-upped the Snuggie!!

Flat Stanley:
Some days with Sclero you feel like Flat Stanley
The silhouette is there, just not a whole lot left inside.....


I liked it better when it was "Hammer-Time"
Now I have my cell phone alarm set for "Pill-Time"

Rainbows and Ponies: I just threw the puppies in for good measure. Puppies are cute. Who doesn't love a good puppy pic every once in while. I promise I don't have calenders or sweatshirts..... Just caught a cute moment of Iggy Pup and her stooge (for those of you ex-punk rockers...yep reference to Iggy Pop and the stooges!!)

Whoops I did it again:
I swear, strike 4 and I'm out.......
Everytime I clean my house lately, something happens. 
I think I am going to listen to the gods and get a housekeeper.
So, to ER twice after cleaning my house due to dehydration, then cleaned (big clean) and had a flare up the next day... and this last time, I cleaned for about 3.5 hours, mopped, vacuumed, counters - and the next day I could not use my arm. I mean it might as well have been "Idle Hands" - it was not cooperating. I had to go to the doc (he is a D.O) and have him manipulate my arm... Note to self: Get a maid! 



Scars (Oh my gawd Becky....)

First off - Not in the best mood today. Not S related at all - Just a mood. One of those days where I'm not feeling all that great about my body. Had some skin break-outs, bad hair day. All that jazz.

So....I  was out exercising, walking....when a couple of teenagers drove by and yelled "You better keep walking with THAT big butt"    (yep, while typing - Song Stuck - I like big butts and I cannot lie...)

Ouch! I almost started to cry. I wanted to yell..."But I was on steroids, you see - I was diagnosed with this disease......."

Damn it!! Why couldn't that song; Beautiful by Christina Aguilara been on my Ipod at that exact moment - I am beautiful, no matter what they say...words can't bring me down. Oddly, I think Ice Ice baby was on at the moment?

That's okay. They are forgiven. Kids don't understand the scars that are left by words. The ripples they make. The depth they can penetrate.

Sadly, I do. I still bear scars from my childhood and beyond. They suck. Which is why I try to always be cognizant of my words. What I say. How I say it. My actions and how they effect people. The ripples I cause.

The irony here is that before "The Incident" I had just gotten up from the bench at which I was looking at my legs. I had gotten bit up by mosquito's the other day, they had a real feast - so I had about 25 bites on my calf's... and I noticed today they no longer itched but had all turned a brown color. So instead of bites, I now have brown patches all over my lower legs.

I realized they match the other scars I have gotten since the Big S. It seems that anything that disturbs my skin, will now cause an aftermath of brown patches on my skin.

I had worn new sandals and got blister burns on the top of my feet a while back. They are still there... amassed in the new brown color that seems to happen to my skin. The old puncture marks from IV - now brown dots. The scab I picked cuz I just couldn't help myself - brown.

I am now starting to think, realize, discern, appreciate - recognize???? This may be a big S thing. That any skin disturbance can cause the brown patchiness.

I am not sure if my hypothesis is correct, but I have read that hyperpigmentation is common with the big S...and morphea will sometimes look brown.

I don't really have any skin involvement at this time. I feel fortunate of this.

What I am starting to feel is the pinky finger in my left hand change. It's from the knuckle down, starting to get hard. It feels funky.... At first I thought it was just knuckle pain.. but there's sumthin happening here - What it is ain't exactly clear!!

It's not really the skin though.....more like the whole damn thing. I guess we will see. Everyday a new adventure.

So now along with age spots, which are new and good times, I now seem to get scars of brown patches. Gettin old and Getting the Big S. It's a party.

Well, I want to work on a blog about Stress and the Big S. There have been a few papers and reports of  a link between autoimmune disease and chronic stress.  I have been researching the connection myself.... and in order to share my thoughts about it, I must give you some background info of my life - which is, at times, some deep stuff - So I forewarn you and I save that blog for another time. When I have a quiet home and time to devote.

For now I leave you with a reminder - Be careful what you say. Words hurt!

If you have the Big S - Be careful what you run into. We scar!

And have "Beautiful" always handy on your Ipod!

Buffalo Springfield - There's Something Happening Here


Drugs Suck!
I was thinking about my brother the other day, well I always think about him - so lets say more than usual,  and decided to call him and found the phone was disconnected.

It was just a disposable cricket thing from what I can tell, but it was disconnected nonetheless...

This always causes me to worry. He's been MIA before and without a phone, and always for some reason I worry more.

Not that bad things wont happen if he has a working phone, its just a comfort mechanism my brain allows me.

So again,  it is now,  every time the phone rings late at nite,  I worry that its "The Call"

There is a constant worry around me, that follows like a shadow. I cant reach him so therefore I must worry.

I know, it makes no rational sense at all, hence the reason said idiosyncrasies have led me to possibly pursue AL ANON

I guess it is a program for families and loved ones of addicts/alcoholics.

Ding ding ding.....Yahtzee!  That's me.

For some reason I have been thinking about him more than usual, even before I consciously knew the phone was no longer - perhaps its the Big S and the passing of my 1st Anniversary.

I often wonder if I saw my brother and he was lucid, if I would tell him? I think not. I am not sure he would really understand it anyway OR it may hurt him to the core, which is unnecessary.

My brother, albeit, a homeless meth addict/alcoholic - is a genuinely beautiful person with an amazing heart. Life is just a puzzle for which his piece does not fit. He is a great guy, handsome, charismatic - but with deep wounds and a really horrible disease.

When I think of him, I hurt and I hope.

I hope he is happy, well, eating, loving, laughing.....

I know what my brother is, what he has been and has been capable of for a long time. I have not had the expectations that my other family has had on/of/for him.

I guess because I saw it, so many times first hand. Ever since he was a teenager, it seems that I was his "It". It was my window he crawled through, my number he called, me he asked to save him when he wanted to die.

Sadly - My parents got to see first hand when they moved here to Arizona and my brother came out here too (after he called me for train tickets)

I think my parents have finally grieved for the son they wished they had had, the son that will never be and have accepted the son that he is.

It is a hard grieve for someone who is still alive.

It is painful.

I think to myself, if I should get bad - if my lungs should fail.... would I get to see him before I left?

I also ponder..... what if I were to go first? A life, a gift wasted on alcohol and drugs and one stolen early by a disease not asked for.

I don't blame my brother, I love him so much. I think I bear the burden of knowing him, the true deep him, more than anyone else in our family. Bo and I were a team and Debbie and Bree were a team - that's how it was growing up till I left home......although I left early.

Addiction is a crazy thing. The ripples and waves it causes.

I guess I have always felt that my brother would not live a long life. AS I get older, perhaps that's why I seem to worry more. Our moralities are closer than they used to be.

I mean not to be a pessimist, I just know all that we have been through. All he has been through. I know his liver is sick. I know he has seizures if he does not drink, I know he urinates blood, I know he blacks out... I know it still happens because the ER bills still come to the house - my moms house.

but there is hope. An old friend of my brothers just got clean. He was pretty into drugs too and his last rehab stuck! Good for him.... It is amazing.

Other friends of my brothers got out of the game years ago. Became doctors, lawyers, had kids, got married - went to AA and keep on keeping on. Good for them.

I don't know what is meant to be for my brother (or me for that matter)

I just want so desperately to hope he is happy. In his own way. That his life is a gift he is his way.

Anyway - Someone told me with cricket you can buy more minutes and reconnect the phone, so for now I am holding out hope that will happen

If not, he knows my home number - which I will never let go of, so I am always here if he calls.

For now - AL ANON on Thursday nites at 6:00pm

Kinda scared to go alone... I guess that's part of the disease? Co dependant?

I dunno, I just really think it would be good with the holidays coming up...

I sure do love him though!

Tuesday, October 19, 2010


Hi All ~

Sorry for going MIA there for a while. It's been a pretty crazy past few weeks.

So, I'm sitting in my bed one morning with my kidlet being silly and I go from laying down to sitting up and WHAMMO!

The room is spinning out of control. I mean, I am having a bout of vertigo of all vertigo's

I couldn't move. The onset of dizziness and nausea hit me like an iron skillet. It was horrible.

It was the weirdest thing... just out of the blue. Or was it?

For a while now I have been having this deep ear pain. Not like an ear infection per se', but a deep "want to stick a pencil in your ear and leave it there" pain that hits the bone.

While at the docs a few times I even asked him to look at my ears to see if perhaps I was revisiting my toddler years and had an ear infection. The answer was always - No - and the pain would pass in a few days or a week, so I would move on and forget about it.

I actually had an episode of vertigo last year.. My first ever. A bizarre out of the blue thing that happened, went to the ENT for it who said "It Happens", gave me Valium to get me through it, albeit - by the time I saw him I pretty much was, but kept the RX just in case. A year went by, so I threw that bad boy away and the incident was nothing more than a memory.

Since then I have had bouts of dizziness and nausea (not vertigo - just dizzy. BIG difference) but I always assume it is either sinus issues, allergies or the nausea from my GI issues.

Now I am a girl who knows nausea... when I have GI flares I am popping Zofran like Tic Tacs, but nothing matches the shear proportion of the nausea you feel with vertigo. Pig Suey! It is not fun.

When I was having the vertigo this time I tried to get up and make it to the potty. I swear you'd a thought I was on an episode of storm chasers during gales force winds the way I was hanging on to the wall to make it there.  Damn......That stuff is scary.

The bedroom turns into the "Deadliest Catch" and I'm a greenhorn (pun intended) trying to walk on deck. And even when the acute phase of the vertigo calms down, for rest of the day you feel like you were on a fishing boat all morning and just got off. And for good measure, your tummy joined the party cuz the nausea isn't going anywhere.

Not fun.....

So this time I got smart and went to the ol' doc and told him of my ear pain and bouts of vertigo to which he replied, there is such a thing as Autoimmune Ear Disease that acts a lot like Scleroderma that causes the narrowing of the ear canal which in turn causes pain, dizziness, vertigo and at worst - hearing loss.

Hmmm - Who knew?

He actually said, yes it could be Sclero related. We would have to do CT scan/MRI to see if there are any changes that can be visualized within the ear to explain the pain and symptoms, and if not - AIED is often a diagnosis of exclusion of which - You guessed it - there is no cure. Booya!

Sooooo the Big S decided it wanted a change of scenery and took a vacation up north. Good Times.

We don't know if that's the case or not - but we're looking into it.

The moral of this story is............Don't throw away the Valium. Vertigo sucks!

I will keep you all posted. I have to do my yearly Chest and Abd CT scan this month and I hate subjecting myself to  radiation that may not be necessary, so I am going to wait on the CT of head for now.

Maybe do the MRI since there is no radiation - But This Girl is seriously Claustrophobic, so we will see.

For now... Just keeping an eye (ear?) on things. Don't want to be ear-rational, but if it gets to be too ear-itating and the CT is ear-resistable - I will let you know.

(Yes - sadly I do crack myself up and I am that dorky)

That's all for now!!

Eye Openers (Why openers)

I was having lunch with my Sclero friend the other day when she said "She started new medications for her lungs and hoped she would live another 10 years" if not "She wanted us know she didn't want a funeral - she wanted a party."

What an Eye Opener

My friend is the leader of our Scleroderma Support Group out here in Phoenix. She is my Big S mentor. I called HER when I freaked the F out after hearing my own diagnosis last year, and now she is discussing her end.

She has had "the Big S" for 8 years, this being her 9th year and the year of the onset of severe PAH requiring her to use oxygen.

It happened pretty fast... No shortness of breath and playing racquetball feeling a little out of breath one day and finding her  PAH score had sky-rocketed.

Stories like this perpetuate my "Why" obsession.

Why am I short of breath - Is it the Big S or is it the extra 10 pounds I put on.

Why was my BP elevated at the Walgreen's - Is it the Big S or am I just annoyed my RX isn't ready yet

There is always a WHY about everything now.

Before it was just, "damn,  I have one hell of a headache" - but not now.
Now its... "Did the Big S make it upstairs?"

Ah...The good old days when a cold was just a cold. When an achy knee was just "playing too hard with the kids"

But now my reality, no matter where that reality lies - in the forefront or back recesses of my mind - will always be... Why? Is it the Big S

I wrote a poem once when I was a kid. I don't know WHY (no pun intended) I even remember it.....

Why is the ocean blue?
To match my eyes?
Why is the sky blue?
To match the far off scene of the ocean?
Why is a question that never gets answered...
Why is the ocean blue?

Yep - That was me - A regular Ralph Waldow Emerson

It's funny though, that I remember that silly poem and now I live in this world of WHY's that do in fact never get answered. No Cure? No Cause? Why? We don't know.

Anyway - I read a story about an event called Fashion for a Cause where the creator said it pretty well:

"Living with Scleroderma is a fight that has no ending. Scleroderma doesn’t allow you to win, then share the victory with your loved ones and continue on with your life. The only thing you can do is build a solid platform to stand on and prepare to fight for the rest of your life. It is a battle without an end. "

Well, I am in the battle and I am gonna give it a damn good fight! Even if I don't know WHY!!

Tuesday, September 21, 2010

Happy Anniversary!

Happy 1 Year Anniversary

I can't believe it!

I missed my Sanniversary!

My Scleroderma Anniversary date.

I thought I would be a sap and ponder over all the life lessons I have learned and center myself to see where I am now, compared to when I was diagnosed - all that important "life event" cerebral emotionally stuff we do when important dates come. 

But apparantly I am not as sentimental as I thought - not a sap - not as profound as I thought I was.

I really (no joke) thought that would be a really important and emotional day for me. But the thing is...I think I went to Sam's Club that day!?!

I guess this is a good thing. Perhaps I have accepted my new life more than I have realized. Which for me,  is pretty huge.... 

I am not an accept-er of things without completely understanding them first. I have said this before, nursing school changed me into needing to analyze things until they make sense to me. 

The irony here is...This disease makes NO SENSE at all! HA! The Big S does not play fair, there are no rules, it is always changing, always progressing causing a continuous series of readjustments and life changes.

Just when you thought it was safe to go back into the water - The Big S will pull a presto-chango and the sharks are I am really proud of myself for forgetting my anniversary date!

As you may have figured out by now, I am a pretty cerebral person and I like to consider myself deep (again - My opinion - I also consider myself good at scrabble, yet I can't spell, so?)

I digress, so I thought that this mile marker would mean a lot to me. And it still may hit me, just not today. And apparantly - not on the 13th either (Ba Da Bum...Ching!)

Well, what can I say. I just remembered. It's been a year since I got the news that changed/is changing my life forever.

I have "The Big S" - but the big S doesn't have me!

It has been a crazy wild ride this past year.....diagnosis, job loss, depression, denial, grieving, hope, acceptance, joy, weight gain, medication changes, major life decisions and now the start of fall again tomorrow.

Life is good.

Last year my holidays sucked really bad (See I got scrooged) but this is my year baby! Mama Griswold is back in action.....bring on the holidays! Tomorrow is the first day of fall, and after that the onslaught of holidays, carnivals, festivals and fun until the new year and I can't wait.

So, I guess I have really changed. I am happy! I am excited and can't wait for the new season to begin. Bring it on!

Well, that's all for now folks. I gotta wash that grey right outta my hair (Salon appt) and then off to the gym (see said weight gain above!)

Have a great Tuesday! Enjoy your day!

Love ~



Today is ~ Peace Day ~

Hmmm - Who knew?

I was looking at my calender while doing bills and realized tomorrow is the First Day of Fall and today is Peace Day.

I don't know about you, but I think that is pretty beautiful.

Peace Day - The Day before Fall begins.

Hmmm. Very Comforting. Like the soft comfy blankets we will soon all be wrapped up in these next coming months.

Peace-Fall. ...... Peace-Ful.

I like it!

It is beautiful. Perhaps coincidence. Perhaps fate? I dunno...

But it made me feel kinda Kumbaya and happy when I saw it , so I thought I'd share.

Peace ~ Love and Joy ~


Sunday, September 19, 2010

Hi Ho Update! Fun with walking......

Hi all !

Update to my post - Hi Ho - It's off to the doc I go.........

Repeat NCV showed a halt or if I want to show off and use my Sclero-Cabulary....a SCA-LT (scleroderma induced screeching halt!).

My legs still sometimes "give out" as do my arms (like in Yoga when we were all silent doing a pose until my arms gave out and you heard a loud BONK vibrate through the yoga room....good times!)

(oh yeah...the BONK was my forehead hitting the ground., good thing I'm hard headed!!!)

Anyway - Now the doc is thinking monthly IVIG injections at home. 8 hrs each for two days through IV - so if y'all have any good must see DVD movies let me know...I'll have about 16 hours to kill pretty soon!!
And if your local and want to join me for hydration and movies...Like Bob Barker always says's......
Come on Down!
Anyway - Actually hopeful about the IVIG - looking forward to see if it does relieve some of the neuropathy and weakness.
What is IVIG: it is essentially (very layman analogy) replacing my immune system temporarily, infusing it with immuno-globulin from donors to flood my own crummy system with un-broken plasma. The results/relief is temporary, as my immune system will catch on and my over-aggressive soldiers will essentially win the battle over the newbie cells again and create autoimmunity - BUT the interim of relief is said to last about a month or in that time you are supposed to feel pretty good.
I heard from a CIDP friend that you feel crummy after the 2nd day and are kinda ugggg for the third day, but day four you are feeling pretty good. She says it's worth it and she couldn't live or WALK without it!
I'll keep ya posted!

Nice Analogy

This one is short and sweet....

As you may have realized by now, one of my passions is research. I love to research medical issues (specifically the Big S), treatment options, theories, etc...

I am a nurse, although not currently working, and loved the research aspect of my job. I miss it. So now I kind of keep a binder of interesting studies, theories, etc.. to refer back to and as a journal of progress for this disease.

Well during one of my "Sclero-sessions" I came across a blog where the writer was trying to describe to a bunch of children about her disease. Her scleroderma had manifested in her hands causing the common curing and crippling we often see with this disease... although hers was systemic (as is mine) so when the children asked what the disease was doing to her body and how was she sick, she was very profound when she answered.....

"See how my hands are deformed and sick? That is what this disease is doing to my insides and organs"

Wow - What a simple, yet really profound explanation to explain why it is we don't look too sick on the outside, but are sick on the inside.

Anyway - I really liked the description and her bravery in talking about her illness and bringing awareness about the disease and allowing kids to not be afraid to ask about things they do not understand - like disease and deformity.

I guess that's all for now folks.....although I have SO MUCH catching up to do. Been really busy - but I'll tell ya why later.

May your Sunday be filled with love and laughter.

Peace ~


Saturday, September 11, 2010

Back in the Saddle Again.....

Fun on the Trolley - The Girls
Yes I'm back..............

I had a great time. It was wonderful to see my sister, as well as, to see how others live in different neck of the woods. I am always fascinated by cultural and regional traditions and differences.

Little Rock is by far, one of the cleanest (and cutest) big cities I have ever seen. It was a blast.

It was also so fun to laugh with my sister and my friends. We laughed until our sides hurt. Literally!!

I did pretty good as well. I was taking it like a champ and keeping up with the best of them. I definitely felt it and needed some down time on that last full day though, but that was OK with me. I had 3 full days of non-stop fun..for which I feel truly blessed, and if the price to pay is a down of down time....I'm in!!

I most definitely still feel like I am catching up on much needed sleep and rest, which I'm sure is part jet lag and part "getting back in the saddle" out here in Arizona.

This is my 4th day home and I had to get up early for my son's soccer game - so I am really low key today. Pretty burnt out actually. I helped out a friend on Thursday and Friday - and by Friday night my hands were crying. That coupled with the jet lag, and fatigue and I feel about 80 today.

I just don't know if this means my hands are getting worse or changing. I see a huge difference now when I use them more, from about 5 months ago. They seem to always wake up with "Mickey Mouse" hands and they are beginning to itch like nobodies business. Almost like they are being stretched, but alas, are not. No skin hardening yet!! Fingers crossed.

I must say I do feel much better seeing in print that I have only been back for four days with no real "Full Day" of complete down time. Like I have posted before, I am the queen of self blame. I am famous for the "Should of" and "Should Be" - so I have kind of been beating myself up about being so tired since I got home.

Mind you, the entire get away I did not follow my "Neapolitan Plan" (my life in 3 layers plan...) so of course it is OK to be tired. I just tend to self blame...think I am just lazy or I compare myself to my friend. "If she can go home tired from our day out, but then have the energy to go out to dinner with friends or go for a bike ride, then I should too" I must be lazy. Working on it. Ohhhh Childhood Catholic Guilt. Oiy!

Well, I better get back to laundry. I have a small mountain to attend to. For those of you who do not know what my Neapolitan Plan is....see the Sclero-Cabulary page!!

Peace, Love and Pics!!

Enjoy ~
My son - Respecting Karate

Me and My girls!!

The Duck Master - The Peabody Hotel
Sissy - Wax on - Wax off