Friday, July 9, 2010

Wake me up before you go go.....

No really.....Wake me up!!

I swear for the life of me I cannot wake up early anymore. What is my deal?

I always set my alarm for 7:00am so I can get up and take my pills, but for the past few weeks I have been falling back asleep. I am so tired lately.

I used to be a mover and a shaker and was up at 5 or 5:30 for the gym. I know those days are gone. But these past few weeks getting up at 7:00 has been tough. Hmmmm.

I regress back to what I always do. Am I really this tired or I am being lazy? Am I a tad depressed or am I really just tired. I am a self blamer (working on it) and a self professed control freak, so I tend to need to analyze things and understand them rather than accept them sometimes. I think nursing school put the cherry on top of the control freak Sundae. Before nursing school I was a lot more artistic and free spirited (actually lived on the beach, as in "in a tent" in Hawaii for 6 months before getting a house) then my brain began to compartmentalize things and my life became a Container Store A la Control.

To be perfectly honest, which is what this journey is about - I have been in a funk the past few weeks. Although I am really not sure why. I can't place a finger on it. It's just kinda been there like fog. Just appeared and at some point will dissipate I'm sure.

Yesterday I did have an off day. It was B12 and Methotrexate day. I do my injections once a week so that I'm used to, but everything was kinda just going right threw me. I think I felt kinda weak, which I am sure exacerbated the fatigue. I don't do well with fatigue. Goes back to the control issues and type A. The only good news about that is my husband brought home Culver's (a hamburger - custard joint here in AZ) and I mowed it down like nobodies business and still lost two pounds.

It was one of those days where you take your pill and then an hour later you are waving goodbye to it as you flush. Perhaps that was TMI - but that was my day. I also read a story the day before and it really affected me. It was about a lovely young woman with the Big S. She had been living with it for 10 yrs with relatively no huge issues (like myself) and it was that last year. It got her. Her skin gobbled her up and the fibrin turned her lungs into raisins and she passed away at 40. The story itself is heartbreaking but I think the thing my brain latched on to was the 10 yrs.

Everywhere you read on the blogs you see most doctors tell their patients, probably 10 years (although sometimes you see 5) I have a few Sclero friends that were told just that, and we all think - Says you! And many have lived past that, but then you read the story where that mark is met. And it opens up a little piece of your resolve that I think forever stays broken. I also have a friend named Janice. She has had the beast for 8 years, this is her 9th year and this is the year she got PAH and is now on 24hr oxygen. Too close to that 10yr mark for my liking.

Perhaps that story is lingering with me like an unwanted shadow I cannot shake. I feel like I have a layer of film on me I need to peel off. I think what it is - today I feel as if my life is a sunburn. Everything just feels TOO much. My reality is just too real today.

I think when I am having good days or feeling fairly well, your mind goes into sleep mode. Like a computer that hasn't been used for a while, the screen goes off and takes a rest. That is where I am when I feel ok. I am off screen and although I know the reality is, I have this disease..It's not filling up my screen all day.

When I blog, its almost as if I am blogging about the otherworldly me. A twin Stacie a few spaces removed. I feel for her and I know its happening but I am a tad busy living right now to address her.

But today is a day that the screen is lit up and everything is right there in print in your face to read. Today is one of those days where it hits you and for a moment you remember its all real. All of it... these moments passing are the last I will see of them. Its all real, no dress rehearsal, it's all happening now like it or not, and it includes the Big S and the future(s) it may bring.

I don't think the other days are denial per se' - I think they just aren't sun burn days. You can take a shower and put on close and sit on rough chairs without really feeling any of it. You are just doing..... its real, its happening, your just not feeling every second of it.

Today is the day that I am really feeling it all. Not physically. I feel pretty darn good today - just emotionally. I guess I am allowing it to fill me up in all the deep places today.

Anyway - I better go run errands. I have a life I gotta live!!

Plus, I never got that damn pretzel.

May you feel everything you are suppose to today at be at peace.

Love ~

Stacie

Thursday, July 8, 2010

Sometimes you get Scrooged

Friends...How many of us have them..Friends. Wait wrong song.

You know that old song, make new friends, but keep the old, one is Silver and the others... Gone? or is it Gold?


I must say you really find out who your true friends are when you get sick. Nothing causes you to reevaluate your friendships, priorities, and where you expend your energy like getting a chronic illness.

If you only have so much energy allotted to you each day (or spoons if you will), where you chose and with whom you chose to spend that energy becomes priceless.

This disease, well any disease I would think, but this is the one I got - so this is the one I know.. This disease is a series of losses. I know I have said it before - but this disease is a never ending series of loses and readjustments. Some bigger and more painful than others.

And there is nothing more painful than losing a friend. It hurts you to the core. Especially when the loss is due to something you did not chose. It's bad enough  you get sick, but even worse that the people who you assume will be there and care, aren't and don't.

I am not sure that is entirely fair to say. People care and show it in their own ways. I try to be really cognizant that not everyone feels like me or expresses like me, and therefore I try to allow the people in my life to own that and I accept them for who they are. Because I love them.

For instance, I know my husband is not the best communicator in the world. I mean - Hello - the guy told me that during deep conversations when its his turn to talk he "hears crickets" - he just doesn't know what to say. I get it. I love him and accept that when I tell him how I feel, I tell him what I need and I may not get that back in words.... but I do get it in his actions. Or he will try in his own way, but I accept I am not going to get a dissertation of how he feels.

I know some people are not as touchy feely as I am, nor are they as fluffy and upbeat with emotion. I understand, I get it and I accept it. But I also know that just because you may not be a certain way doesn't mean you shouldn't try. Especially when I need you to. Especially when I verbalize what I need from you and tell you.

I don't ask people to read my mine. If I need something desperately from someone I will tell them. And I did.  "Hey, I get you are not fluffy but I need you. I need you more now than I ever have. I am scared and I need you to be my best friend. I know I will be needy but I am scared to death and I need you to be there for me"

I lay it out on the table and because you love me, I guess I feel like you are supposed to try. Sometimes you do things not because you want to, but because the person you care for needs you too.

Sometimes you take one for the team. Maybe giving someone a hug is right up there with going to the dentist, but you see someone in pain that you love and know they need you so you hold them. Cry with them and tell them it is okay, we will get through this together.

I get it.. Having a sick friend is probably a drag. A pain in the ass. Especially at the beginning when everything is new, and you feed in to all of the websites telling you your dead in 5 years, when you are latching on to any hope and looking for any case study that will save your life, sending endless emails of case studies or treatments and seeing more doctors than Madonna has bustiers. I get it. It probably gets old.

But the reality is, everything that is emailed, spoken, shared and said is all real and is all really happening to someone you love. And it is painful and lonely to go through it alone. And when friends don't acknowledge and talk with you about your illness and what it means, that is exactly how you feel. Alone.

It is so lonely to get sick. You lose a confidence in life you used to have, you lose energy so you don't go out as often, you lose so much and your mourn. And to go through all that without a good friend is painfully lonely. The only thing worse is to go through it with a friend who acts like what you are going through is insignificant. Who doesn't validate your fear, your illness or your need.

I had a friend when I was diagnosed. It was a dear precious relationship to me. A long friendship of intimacy. Where private thoughts were shared, confidences were held, confessions were made. There were ups and downs, good times and bad. It was a friendship. A safe place I thought.

Then I got sick. Mind you, my timing sucks. Not only did I get diagnosed with a rare incurable illness, but I lost my job the same month. And not only did I do those two things, but I did them during the worst economy we've seen in ages. And not only was the economy bad, but we lived in one of the worst housing markets in the nations.

So my friends and neighbors - Everyone I knew was going through heavy duty stressful times. People losing homes, people walking away from homes so underwater their address was next to the Titanic. My timing sucked. I get an F in the timing department.

But in some weird way - the economy and housing we were going through it together. We were helping each other through it and talking about it. Being able to talk about it made it so much better. It lessened the stress and made it livable. We were a community and we had gathered around each other to help. Like communities do during a natural disaster. Only this wasn't natural, it was economical - but we were there for each other.

So I guess I thought that when I got sick, my community, my close friends would rally around me, we could talk about it, we could lessen the stress and make it livable together. But that didn't happen.

I can't say that it was all bad and heart break. Out of the loses of some friendships, new ones blossomed. People that used to be just acquaintances opened up to me to say some of the kindest words that have ever been said to me before. New friendships were made and those turned out to be my saviours.

But I mourned over the friendships lost. I cried and mourned and spent way too much time wondering why. Why doesn't she care? Why am I not good enough for her to show me she cares? Why am I not worth it for her to give me what I need and what I asked for?

Then after many moons of crying, I realized it wasn't about me. It was about her. People can only give what they can give. My mom once told me some people just can't handle dealing with an illness.

That concept is foreign to me. How can you not handle dealing with someone who is sick? I mean, how can you not have compassion? How can you not have empathy? How can you not be strong for a friend or loved one? But the lesson I learned or perhaps was supposed to learn again, is judgement.

Just because I would have done, or have done or would do - does not mean that others are capable of the same. Perhaps I was supposed to learn to cut my losses and fill my life with positive energy and people I could rely on without judgement.

It was such a painful journey though. I remember during those first few months even thinking "Okay, well she cant handle hearing about it or reading about it, so I just wont talk about it with her" - and now I realize how sad. How truly painful that I was willing to stay in a relationship where I could not talk about something so serious that was happening to me. I guess I felt like, well - I get it, your not fluffy, your not overly open emotionally so I will accept your limitations. But in doing so, I felt slighted. I felt like our friendship became an acquaintance. I felt like, I get it your not fluffy but sometimes you need to get over your bad self and love your friend more.... especially when I expressed what I needed. Sometimes you need to make time to give back.

The title of this blog is I got scrooged and you may wonder why. Well, when you are diagnosed with anything I think the first few months and probably the first year are an emotional roller coaster of readjustments. Finding a new normal. Acceptances of new limitations and grieving of loses. It's a doozy of a ride. And during that first year, friendship is so crucial. With illness all of a sudden, nowhere and nothing is a safe place any more. You realize anything is fair game. Life sometimes does not play fair - so you crave safe. You crave people and closeness and love.

So with that said, holidays become so much more important than they ever were before. The irrational you thinks "What if this is my last Christmas" and the rational you that is trying to remain calm just says, "I don't want to be alone this holiday - I need it to be joyous and full of love and laughter"

One of the most painful (not the most, I have a past that could be an after school special) moments I have ever experienced was just being diagnosed with an illness and finding out that you are not invited to your best friends house for the holidays because "Your illness is a drag and she cant handle it"

Wow - Talk about an iron skillet to the face. Ouch. So after months of going without what I needed in our friendship, accepting limitations I shouldn't of had to accept from a friend, I am then not invited to Christmas. It was so painful. I had already expressed what I needed from my friend and in that plea I think I even stated that I needed to be around friends during the holiday - and apparently my illness was a drag. All I could say was...."I got scrooged"

I think I was starting to accept that I was not going to get what I needed from that relationship, but I was so sad. It hurt so badly. Again - I expect no one to read my mind, so I verbalized my hurt about the holidays. I was sad. But I don't think my pain, hurt or betrayal was understood. I don't think the understanding that we are all going through stressful times, we are all losing our homes, we are all hurting from the economy - only I am doing it with no job and a new illness was there. Perhaps she was only able to handle so much stress and wasn't strong enough to be my friend to. Perhaps she also cut her losses.

I try to forgive and understand the why behind the what people do, so the holidays passed but things were not the same. As she pulled away I became close with someone who shared my same perspective on life,  sense of humor and extrovert. I can honestly say I could not have done it without her. I would not have made it through the month of testing without someone to giggle and gag with over the invasive procedures. I would not have made it without someone to love me enough to joke with me about the darkness and misfortunes that may lie ahead, and cry with me when I got scared. And listen when I needed her too. Some of the funniest one liners were made during these times. "Go ahead and pick up the kitty, if she scratches you, you just won't heal"

At the beginning of my new friendship one of the most beautiful gestures that has come from this journey was when I mentioned something about muscle fatigue, and my new friend responded with a well educated response about my disease, and I asked "How did you know that" to which she responded "I have been reading up and researching about Scleroderma since you told me you were diagnosed" I don't think my other friend had even looked it up.

I was so touched it brought me to tears. What a beautiful, selfless, thoughtful act that I will be forever grateful for. At the moment I knew she was a true friend. Since that day we have learned so much from each other and supported each other through some tough times. We've had tiffs and ups, downs but we both know our friendship is a safe place and we can be real and raw with our emotions and if one of us needs the other, we know they will be there.

My friend was there while I mourned and grieved my old friendship, and understood my sadness and confusion, and understood my decision to cut my losses. I just did not have the energy anymore to give and not get back. My energy is too precious a commodity now.. and I let go of that friendship. Letting go was so difficult, but time heals all wounds. There are still times I want to pick up the phone to tell a silly story, but I also realize since the time has passed I haven't felt as empty and let down. I know where I stand with the people I have in my life  now.

I think the last straw was when I told her I had to start chemo and the response back was... "Are you going to the gym tomorrow"

I guess that was my last clue that I should cut my losses and fold em. Still very painful. Still very sad. But in that pain came friendships from places and from people I never expected and never even realized were my friends. It is quite eye opening. So many lessons to be learned.

I had posted a question about loss of friendship after diagnosis on one of the Sclero site and sadly and surprisingly there were a few people that validated they too had lost friends. People not understanding the new limitations of disease, etc.. I find that heartbreaking... But I guess we're not in Brownies anymore and not "friends till the end"

Life is funny. Life is good.

Hope this finds you all well and wearing a great big brownie smile!!


You must not be sick - You look so good.


I often get the feeling from people or friends that I am making more of this “Autoimmune thing” than warranted. I have heard things ranging from, “Oh someone my friend knows has that and she just takes a pill” (mind you that “pill” is probably chemo or a steroid, but a “pill” nonetheless – to – “well don’t worry then, you could live another 20 years” (ummm if I told you that your life would end at 60 and you should be happy about it, would you be?) -to – the ever famous “but you look really good”.

People are funny. I understand there is no “Right” thing to say to someone who becomes sick. I get it. But sometimes just being there and having the empathy to try to understand what it may feel like to the person is enough. There is so much judgment sometimes………. “you must not be sick if you can work out, clean your house, make it through an aerobics class, put on make up, do your hair, or be silly with your kids”.

So, because I am sick now – I do not have the luxury of looking good? Of living as much as I can. I should walk around catatonic looking like Roseanne with Something about Mary hair? I want to look good. It feels good to look good. I like feeling pretty, especially when you don’t feel good on the inside. Yet not every day IS a good day.

There are the days when I can’t get out of bed. I am so tired I sleep through my alarm and then my back up alarm. Or days when I drag myself out of bed only to sit there and stare like something out of a Goerge A Romero film because I don’t have the energy yet to do more than that. There are the days when I do make it out of bed, but holding a hair dryer would require more energy and resources than fixing the BP mess, so I throw my hair up in the house wife pony bun on top my head and get er done. Those are the days where I wish I could apply my make up but can’t because my arms are so shaky the end result would look like a crime scene or at best the hooker from My Name is Earl. I feel ugly on the inside and the outside is no picnic either.

Those days when I am “Feeling” my illness are scary. It is a reminder that some foreign enemy has stolen my life from me. I look in the mirror and I am not the same person. The reality that the “type A all the way” me is gone for good and has been replaced by a Golden Girl. I used to do it all, and still stay up to watch The Late Show. I was a doer, I was an achiever, I was living a life full of energy able to do what ever I wanted because I felt great and had the energy to do it. Now I am lucky if I stay up till 9:00. I didn’t even have the energy to finish the season of “Lost” 

I am not that same person. I don’t think people or friends understand. I can’t do it all anymore. There are days when I cry because I can’t even clean my house. Something I am sure most people wish they didn’t have to do – sometimes I can’t and wish I was still one of those people wishing I didn’t have to. I don’t think people realize that yes, I may work out, but the reality is I will pay for it if I do too much. I may not be able to lift my coffee cup the next morning, something so simple that most people take for granted. If I over do it – I may literally be in bed the next day or at the very least, I will not be using my arms or legs – which by the way, really puts a damper on doing much! So – Yes I may not look sick and I may be working out beside you, but that doesn’t mean my life has not changed.

I thank God for those days or weeks where I feel well enough or have the energy to pull off normal. I make the most of it and cram in as much as possible because sadly I know right around the corner lies the unknown. With an autoimmune disease you DON’T know what each day will hold. Each day is a new adventure and trip down the rabbit hole to new symptoms, energy level and abilities. What I can do one day, I may not be able to the next. It makes planning a tad precarious. But that is the reality. I may wake up and blog and when I am done be so stiff and my hands decide to quit on me and that’s it. Game over – Check Please – Don't forget t tip your waitress - Thank you and good night.

Looking good takes work – so I guess I should take it as a compliment when people say..”Oh, but you look so good” or “But you don’t look sick” – because flat ironing the Rosanna Dana hair and putting on make up some days is right on par with disarming a nuclear weapon. But I can’t help feel that behind the comment is the human need to justify – “well if she looks fine, she must not really be that sick”, “If she can exercise she must not be sick” or “Hell, I have four kid and work full time, ‘Im tired too”

I would never belittle someone else’s pain or fatigue. I haven’t walked in your shoes. I don’t know. I think how we handle life is an accumulation of our life experiences. What one person can handle, may spin another person into a nervous breakdown. I think our past and past experiences prepare us on how to handle life. You know that expression – Life is 10% what happens to you and 90% how you react to it. So when people who are not dealing with an illness express their fatigue or stress, I get it. Hell, I’ve been there too. I was a teenage mom, a single parent, I worked full time and put myself through school – get it. You get tired sometimes. I just think what I felt then was a different tired than what I feel now and I wish that people would try to understand that.

I have had a bad few days, I am having some malabsorption issues and I think it is causing me to feel weak or perhaps it’s a flare up from being in the sun too much over the Fourth of July. I went to Sam’s Club yesterday and I couldn’t stay. My muscles weren’t cooperating. I felt too weak to walk around a silly big box store for 30 minutes. I mean such a silly little insignificant outing was halted because my body decided to betray me. Something I am sure many people take for granted, I know I did. All I wanted was a pretzel and some cheap socks!!

The things I do, I do when I can. I do not take anything for granted. I exercise to function. To keep my joints moving and to not lose mobility. I need to keep my heart healthy and my lung capacity strong. I need to keep myself strong. To keep as much muscle as possible since I will continue to lose ATP and muscle function. I want to be a size 4 and have a Kardasian body – but I am no longer working out for that any more. I am working out now to live. To be healthy and to function. The irony is at times working out causes a longer recovery time because of my illness. Taking an hour class may take the rest of the night to recover from. It is a catch 22.

I used to work with a trainer every day. I had signed up with him before I was formally diagnosed, but was still having vague subtle symptoms. I would have days where my muscles felt weak or I felt like I was unable to lift my leg in an exercise I could do the week before. Because I am me, I of course blamed my self and thought I was just lazy. I would get upset with myself. I remember telling my friend about it at the time and not thinking anything of it. Of course it was just laziness or weight gain. But as the training went on, I knew something was up. My muscles were not cooperating, and then visa vie – I received the diagnosis.

I kept on. I wanted to train. I wanted to look great and be healthy. It was fun. But it was also taking a toll on me. I can no longer get up so early. I can no longer push myself too much. During my training, my trainer would push me harder – and I did not want to fail, let him down or my work out partner down, so I would try. Then I would get home and my arms would just fail. I tried explaining it to my trainer and partner, but I don’t think they got it. I understand, it’s the trainer’s job to push. But I could not be pushed anymore. Some days I couldn’t even lift the same weight I had the day before. I think because I looked fine and had always done it – the expectation was to keep on doing it. But I just could not.

I had to cancel the training and trying to explain an illness to an institution built on strength was like explaining why keeping the blue dress was a bad idea. I mean – they just weren’t getting it. It was a humiliating and degrading experience, not helped by the end of my friendship with my work out partner. It sucked. It sucks to feel weak. It sucks to feel like a failure. It sucks to see people go on without you while you are left behind unable to keep up, it sucks to lose the ability to do what you have done. It sucks…. But I think with an auto immune illness you are sometimes alone in the suckiness because you don’t look sick. There is not much empathy or understanding.

So, I guess I look fine which I am grateful for. For now anyway. Anyone who has taken the time to research the Big S knows that in time, there may be cosmetic changes to come. Which is frightening. From a vain “I like my face” point of view to the loss of movement and eating ability it may bring. It is scary to think and to know, that my face as I know it may change. That I may lose my upper lip and not be able to close my mouth. That is a reality that my future may bring. 

I get my nails done, I get my hair done, I work out as much as I can. I want to look good because there will be days when things will get ugly. When I am throwing up every internal organ I have after my weekly methotrexate injection. When the bottom of my shower looks like all three ZZ Top members shaved their heads and beards because of the hair I am losing from chemo. The days when I wonder how soon before I will be doing the “The Donald” comb over. So for now – I don’t look sick, I do look fine and I do look good. And damn it – I will take it!

I am learning to not let the “But you used to” get to me any more. I am learning to be proud of myself when I am able to make the engagements I planned and to forgive myself and not fee guilty about the ones I may have to cancel. I am learning that people who love me and care about me understand, and those who don’t get it never will.

I don’t look sick. I know it….I hear it. If I stopped doing all the things that I have just talked about…would I be more deserving of your sympathy? But the point is – I don’t want sympathy. I want friendship and understanding and on the days I feel ill, once in a while some empathy. We all want that right. Validation, that what we all do on a day to day basis is hard work.

I gotta know when to hold em and know when to fold em. So yes, some days I will be in it to win it and out there knockin em dead trying to do as much as I can, because tomorrow may be the day that I lost the battle and have to fold em.


Wednesday, July 7, 2010

Steroids are Great until you Gain Weight

Ahhh yes. The Steroid. The best worst drug ever created.

Let me tell you, during a flare or when I have lung issues, steroids are my best friend. They are a life saver. Literally.. to some people, Steroids are life savers. It is a great medication - with many great side effects.

Fortunately I was not on steroids for that long. I did not have to worry about some of the long term side effects that go along with chronic steroid use. But... I was on them long enough to gain weight!

I have the dreaded Steroid Stomach and the Steroid Spare Tire. Good times. I am sure some of the steroid fat has taken up residence elsewhere too. I have had to go up a pant size. Since it has taken up residence, getting it evicted has been no easy task.

It is bizarre. I did weight watchers and worked out the entire time I was on the darn things and you still gain weight? If I knew that I would have eaten a lot more pie! Nevertheless - I am post steroids with a post steroids body and I am trying to lose the weight, and love myself in the process.

I am doing weight watchers and am working out again. I took a respite from the gym when my membership expired and oddly enough, I actually lost weight? I think probably mostly water weight due to no weight training - but again - a sick joke. But I am back on the wagon and have rejoined the gym and after the holiday weekend I am a full fledged weight watcher "WW"

I am learning to be at peace with my new bod. We went away for the 4th of July to a resort with my kids. It was the first post steroid public appearance in a bathing suit. I had a little abdominal anxiety the night before we left and rushed off to Target to look for bigger suits (i.e. Less Muffin Top) and ended up getting a tankini and a skirt bottom.

Now I am no and have never been a Cindy Crawford.. I was no swim suit model by any sense of the word, but I have always been able to wear a bikini and feel pretty good about it. Puh-lease...I still had the cover ups if I had to walk around, but I have always worn a bikini.

So the tankini, skirt bottom and one piece are all new to me. But for fear of scarring people for life - I bought them and packed them and off we went.

The lesson (remember there is a lesson in everything) here is life is to live and be enjoyed with your family, not be a fashion show or worry about something as insignificant as a swim suit.

How did I learn this lesson you ask? Well, when we got to the resort it was about 1:00pm so most all of the lounge chairs at the pool were taken, so searching for four chairs together was like looking for a Democrat at a Gun Convention - not easy. But my husband found our spot, way in the back forty - Right Next to the Snack Bar! Where every soul at the pool stands line line and where every macho drunk guy is waiting to buy his next beer.

Yes - that is where I was to sit and take off my cover up and let it all hang out. Steroid spare tire and all... and for the first few moments I felt really sad and very self conscious, but as the theme to Rocky went off in my head - I yanked the cover up off and had a "Hello World Here I am" - That Girl - throw my hat in the air moment.

I was free. free to be you and me! I owned that Tankini and had the best weekend ever. I wore the swim skirt the next day, but I didn't like the way it floated up in the water, so I don't see that in my near future again... but on day three I broke out an old school MeeMaw one piece and rocked it like nobodies business.

I felt good. I felt free. I felt alive and grateful to feel well enough to be there and that was amazing.

Now I am gearing up for round two which is vacation in two weeks at the lake with my sisters. They are amazing beautiful women who both just happen to be size two.. with perky boobs - but hey!

I had an amazing Fourth of July and I hope you all did too!!

Life is good! (even in a one piece!)

Me Rockin the Tankini - Steroid Stomach and all!


Me and my beautiful boys!!

Friday, July 2, 2010

The Facts of Life

You take the good, you take the bad, you take them both and there you have............A life interrupted with Scleroderma.

It's funny how you sometimes see recurring themes in your life, or signs if you will. I am a believer of signs. I try to trust that there is a plan, and that whatever is happening is supposed to be happening. That there is a lesson to be learned from everything - especially in disappointment.

When I was first diagnosed with the Big S, after the shock and fear subsided, the thought about the "Why" crept in. Not the "Why me?" I had a friend ask me once, Did I ever ask "Why me?" and I told her no. Actually I never had a Why Me Moment - what I thought was, Why NOT me? What makes me any better than the women who have lost their lives to breast cancer or when stopped at a stop light - what made me more entitled than the women in the cars stopped next to me.

It was "The Why Now?" What lesson was I supposed to learn from this. I have lived a life of depth with a past filled with many struggles (teenage pregnancy, single parenting, sexual assault) so my thought truly was, why now?

Sadly, around the same time I was diagnosed there was a public interest news story on about a young mother who had battled and lost her life to Colon Cancer at the age of 35. Wow.. That was so heartbreaking and shocking. Why her? I guess what I thought was how grateful I was to have been diagnosed so early and I just felt lucky.
 
But in these past 9 months I have revisited the thought about the lesson I am to be learning from the Big S. My thoughts on that thus far is that it is a Huge wake up call. A reminder to start living and the live in the moment. To love myself unconditionally no matter what size or what I may look like, and to stop wasting time. I lived my life for so many years always feeling that I was either not good enough, not thin enough, hadnt accomplished enough, wasn't doing enough, was supposed to be doing more- I had the I'm Suppposed to monkey on my back.
 
I had a girlfriend who was a stay at home mom, and when I looked at her I saw that she was truly content in her life. She loved being a wife and mother. She loved her life and seemed happy. She was a beautiful girl, but she wasnt perfect, or have a perfect body - she was just her and she owned it - and I had so much respect for her. That she was able to be content with the life she had created. What a beautiful and amazing thing.
 
No matter where I was in  my life, I was always supposed to be doing more, have accomplished more and always felt like I needed to do. And not just be. And since the Big S I have learned to just be and find some peace in that - but boy is it hard.
 
Lately I have had a recurring theme in my life. I am adjusting to life after 40 and all that brings with it... things are not bouncing back like they used to, things are not staying where they used to, things are growing where they didn't before (chin hairs anyone?), you don't have the same energy you used to (Sclero aside)... and I sometimes have this subtle wish that I need a Life Coach to get me going and push me in a new direction. Get me going again, but differently.
 
Then last night I was watching a show and saw the ER Nurses helping to diagnose patients, and I thought - that is supposed to be me. I am supposed to be in the action. I wanted to be a doctor...or at least an NP. I wasn't supposed to get sick. But I just dont have the energy to finish. My life has been interrupted.
 
Ironically, I was talking with my mom who told me about an article in More Magazine. It was about  inventing yourself after 40 and after a catastrophic illness. There were women in there who after breast cancer and double mastectomy's had changed careers and reinvented themselves.
 
And to my surprise, my mom told me one of the women featured was a news anchor who was diagnosed with the Big S. The article said she was at the height of her career and was diagnosed. She decided to stop working because she was struggling with the fatigue that comes along with the Big S - and her friends all said she was crazy, that she had finally gotten to the top and she could go so far now.. why would she want to retire from TV. I guess she had expressed that she didnt have the same energy and she could feel her body was battling a disease and she wanted to make her life simpler and spend more time with her family and just enjoying life more. 
 
I found peace in that. I was validated that someone who "Had it all" career wise admitted that she did not have the energy anymore to keep "doing it all" - I think that allowed me to feel ok that I have taken a breather these past 9 months and haven't been "Doing" like I think "I'm supposed " to. I felt so validated and for me - to feel the permission to feel tired sometimes now is freeing. 
 
What I realized my life theme is now, is acceptance and rediscovery. I realize that it is okay to reinvent myself. My life is different now and my old life plans will not fit anymore. I have a new normal, and that is okay. 
 
My goal is to reinvent myself. I am 40 - I am not perfect and I cant do it all. What I can do is find peace in the life I have now, and realize my life lesson to LIVE this life to the fullest every day and to enjoy living simply in the moment. 
 
I am learning to shed the "I'm not good enoughs" and be proud of who I am now... The Big S and all. But boy is it hard. There is a new lesson altogether in that. There is just so much to learn in this life and it truly is an amazing journey.
 
So - I am working on reinventing myself. It's been a crazy ride on this Sclero-Coaster, but this is a new chapter and it is going to be okay!
 
Peace and Love ~
 
Stacie

Thursday, July 1, 2010

The name of the game is wait.... and see.


As you remember I was off the the doc last week for some fun and adventure.

I received some lab results back and my PTH (Parathyroid Hormone) came back elevated. As a matter of record, we do have a history of parathyroid cancer in our family thanks to our lovely Aunt Marcie (who is perfectly healthy, fine and successful). PT Cancer is pretty rare, so I am not really concerned about cancer but having a family history of a disease always makes the docs perk up.

The culprit could actually be my Vit D deficiency. That or a Parathyroid Tumor (which are benign - just a pain in the a**). We are not sure, so for now the jury is out and the plan is to repeat labs and get a PT ultrasound. Repeat Labs, "Come on Down".

With a vitamin D deficiency you can't absorb Calcium effeciently, so your parathyroid gland works harder to produce Calcium, which in turn produces a high PTH Lab result.

With a parathyroid tumor, the body wants to shut down the Calcium absorption from the intestines and it does this by limiting the Vit D in the body - thus a low Vit D level and High PTH.

Right now my Calcium (CA) level is high normal at 10.5 (high is 10.6 and over) so I am on the cusp so to speak (just like my Horoscope - Aquarius/Capricorn).

So, due to pure body chemisty, a low vitamin D level can have a high PTH level with a normal calcium - and the issue isn't the parathyroid at all - Just the Vit D deficiency. So, "The tribe has not spoken" yet.

However - the Vit D deficiency could be caused from the elevated PTH levels.. and because of the low circulating levels of Vit D, my Calcium could actually be much higher when my D normalizes. Good news is, not cancer just a chemistry puzzle, so I guess for now we wait and play "Wheel of Fortunate"

It is a what came first - the chicken or the egg scenerio - which is a wait and see. Will the "Real Answer Please Stand UP"

I will keep you all posted to see what "the final answer" is... but if it is a PT Tumor, the treatment is surgery. It is out patient and pretty routine. Again, just a PIA and a scar. But I read that if you do have a PTH issue - once removed your energy level boosts and you feel so much better. Hmmmmm I guess we'll see.

I'll take a normal PTH level for $200 Alex. Yes, that's my final answer.

Whoopie!!

Stacie

Vitamin D and Me!


Today's lesson is Vitamin D - Vitamin D and Me

So take notes in your trapper keeper. This is serious business.

Ok, so the word on the street is that all or most sclero's have a Vitamin D deficiency. Actually it is quite common in many autoimmune diseases although they are not sure why. But it seems that Vitamin D is becoming pretty popular in the news today for everyone. Vitamin D is said to actually be more important that was originally thought AND it is thought most people are probably low in Vitamin D.

What does that all mean....Well, it means get yours checked. I did... Well, lets say my doc did and I was found to be really LOW.... as in I was playing the Limbo with my Vitamin D stick. My level was at 12. Normal is 32 - 100.

What the heck does Vitamin D do? Vitamin D is essential to our bodies. We can't make it, so we have to get it in our diet, or get outside and have the sun make it for us (yep, sun light on our skin causes our skin to make Vitamin D). Wahoo..... Only with some autoimmune disease you are unable to tolerate sunlight?

Vitamin D does ONE THING in our bodies.. it helps our intestine to absorb calcium from the foods we eat. Thus, Vitamin D increases the amount of calcium in our bodies. If our Vitamin D levels are low, then our intestines have a hard time absorbing calcium. Our intestines MUST have at least a little Vitamin D to absorb calcium.

For you older people out there (not me of course) did you notice that most of the calcium supplements (Citracal, Oscal, Caltrate, etc, etc) will have Vitamin D added to the calcium pills? This is because our intestines need the Vitamin D molecule to absorb the calcium molecule through the intestinal wall and transport it into our blood. It regulates the calcium and phosphorus levels in the blood and helps to absorp these minerals from food in the intestines.

Vitamin D also manages the re-absorption of calcium in the kidneys. Vitamin D is also thought to regulate normal cell differentiation and proliferation (e.g., prevention of cancer), promote insulin sensitivity and blood sugar regulation (insulin secretion) and regulates over 200 genes through binding to vitamin D receptors throughout the body. Who Knew!!

Being Vitamin D deficient can cause a lot of symptoms that you may not even realize. One of them is muscle and joint aches. Other concerns are; osteoporosis, depression, heart disease and stroke, cancer, diabetes, parathyroid problems, immune function — even weight loss.

Some symptoms of vitamin D deficiency are: muscle pain, weak bones/fractures, low energy and fatigue, lowered immunity, symptoms of depression and mood swings, and sleep irregularities. People with renal problems or intestinal concerns (such as IBS or Crohn’s disease) may be vitamin D deficient because they can neither absorb nor adequately convert the nutrient.

Come on people, we have ALL complained of one or a few of those things.... so the lesson for the day is GET YOUR VIT D checked.

I have a malabsorption issue, probably related to the big S, so I have struggled with vitamin D supplementation for over a year now. I have finally gotten my level up to 51 and I am hoping it stays there. Come on D!!

The irony here is that my levels got better after I started to go to tanning salon. Now who says Tanning Salons weren't therapeutic??? Maybe I will start becoming an anti-tan salon tax activist? Me and the Jersey Shore girls. Good Times.

Anyway - It took me forever, and that was taking 50,000 units of vitamin D a week, plus the normal recommended 5,000 IU a day. That didn't work, so I was put on 50,000 units a day and my numbers started to rise and hit the normal range with some sun exposure.

Now for you folks out there, you probably won't need 50,000 IU a week. The recommended daily dosage is 5,000 IU a day... But make sure you are taking it. And if you have the opportunity to do so, please get your Vit D checked. There is no need to suffer with vague aches, pains, fatigue and mood swings when the problem may just be a low vitamin.

Okay... Well I am done with my preaching and will take off my Sally Field costume and step off my soap box.

Get your number two pencils sharpened and your scantrons ready... pop quiz tomorrow!!

Enjoy your sunshine!!

Stacie