Friday, March 25, 2011

TGI-Flare...




So I spoke too soon.  Perhaps it wasn't the tail end of things cuz today I feel - Uggggh.

That or I jinxed myself with all that Happy Happy Joy Joy stuff   :-D

Ah yes, so today.... Today I finally got that achey flu like fun that we talk about with autoimmune disease. It's the pits. I also have the fatigue big time. The "walking through sludge" feeling. I woke up so groggy and tired this morning I felt like crying and seriously considering a coffee enema. My joints are screaming today. And I wanted to stay in bed. Yep - It is definitely here.

I had to go for an MRI of my left ankle today at 9:30 which felt like torture because I was so tired, but off I went to lay there under the thing, which basically amounts to a 45 minute really "Loud" nap.. so not too bad.
The doc ordered it because I have a nodule on my ankle that he wanted to check out. Not sure if its a calcium deposit, hardened connective tissue or just a cyst - but since my "Gangsta Gimp" has been getting worse, he thought the MRI couldn't hurt.

My ankle does feel like it is getting worse, and when it locks and does the gimp limp it is really not conducive to - well - walking, so I am interested to see if there is something there or if it's just AI and the big S. My theory, because as you know, I must theorize everything to death...... is "If" there is a nodule, cyst, whatever, there - perhaps it is pushing on nerves or tendons causing the pain to be worse?

Who knows... All I know, is if I didn't have the damn thing this morning... I'm not sure I woulda bet on me getting up before noon - lol.

As it was, when I got back I was pretty useless... I went to Target for an errand, then came home and was so tired, achey and beat that I actually lied down for about an hour and a half. I'm not a napper -so I just kinda day dreamed and relaxed, but I was beat. When I got up, I really wasn't much use then either. I'm still not. I feel foggy and drugged and like I have the flu. I feel so tired that I am on the verge of tears - only it's not fatigue that can be relieved from sleep - its that whole body bone crushing AI fatigue. Ugggg

But I made myself - after a few hours of internal cheerleading and coaxing - come in and update the blog so you know know that it finally hit... and that after my "Pocket Full of Sunshine" blog yesterday, everything's not coming up roses. BUT - for the record - I'm still in pretty good spirits about it. No Whoa is me yet...

Just trying to stay upright for another half hour so I can drop my son off at the "Middle School Dance" - whoop whoop!! There's Lasers.........

Anyway - so today I feel pretty crummy and extremely fatigued. Like I am fighting a horrendous flu and people are sticking hot pokers in my joints...

Also noticing that things are starting to get stuck again when swallowing... so I guess I may be off to see the wizard again. My last esophagus stretching was October 2009 - so I'd like to try to wait it out until October 2011... so we'll see. I'll keep y'all posted about that too... Other than that - Not much else to report.

In about Ohhhh 45-50 minutes, It'll be "The Final Countdown" and I will be Horizontal in my bed and loving every minute of it...

Hope you all have an amazing and beautiful Friday!!

Namaste ~

Stacie


Thursday, March 24, 2011

Attitude IS Everything !!

Attitude IS everything......

It really is. Especially in today's trying times.

I had someone ask me yesterday how I have such a sense of humor about the Big S... and Aren't I scared?

And my answer was; Hell if I'm sick or dying, I want to at least have fun doing it!

Just because your sick (or whatever negative circumstance you may have) does not mean you have to live IN it everyday. Your disease does not define you. It is not who you are or how you get validation. It's just the way it is.... not to be so blunt - but hell, it is what it is. Those are the cards... so what you do with them is up to you.

Who WANTS to be sick, or grumpy, or complain all the time....Not me. I'm not a big fan of those types who enjoy playing or living in the victim role. I just don't understand it. I try not to judge it and understand "the why - behind the what" that may drive those who chose to live life that way - but it gets old. And quick...

I try to just accept the things I cannot change (serenity prayer..) like the Big S and just live my life along with it. Sure - I might not feel great at times, but that doesn't mean that I cant still BE great. Right.

Life is what you make it... You can create your own existence - and as a matter of fact you do. It's pure physics/Science?Magnetism?Law of Attraction - whatever you want to call it... "that which is like unto itself is drawn" .......You chose how you want to live.  If you want to be sick - you'll be sick and feel sick all of the time. Whatever it is you think and feel - you WILL live the results.

So I chose to not BE a sick person. I am just a person who happens to have Autoimmune Disease which causes me symptoms of which I feel physically and must deal with. That's it.

I don't live in a state of constant worry about what may be, what can happen, what is supposedly going to happen down the line...... I would be bonkers AND a complete downer to be around. Sure I think about it sometimes.. but you know what I call those moments. A WAKE UP call to live.

I just want to live every moment I can and enjoy them as much as possible, hopefully with a little grace and dignity and a LOT of laughs and smiles. Try to be as kind as I can. Show as much empathy and understanding to those around me as I am able, Try NOT to judge - cuz every body's life experiences have been different - Be a good person, mother, wife and friend - and love myself as much as possible.

And no I don't walk around happy everyday singing Zippidy Do Da... mainlining Prozac or take a happy pill suppository. I just try.... when I start to give in to the pitty party, if its a really bad day - I will allow myself THAT day to feel bad (love myself) then pick up my boot straps the next day and live. I try not to cause or create too much intensity.

And if I need someone because I'm not doing so great conquering the demon that day on my own - I reach out and tell people "Hey - I need you" "I'm scared, lonely, anxious..whatever today" and I let them know. No games. No drama... just a moment where I need to know someone else is there. Validation. After that, I move on -back into my life and try to be as dorkily blissful as possible.

I read something someone posted - It went like this:

Do all the good you can; by all the means you can; in all the ways you can; in all the places you can; to all the people you can; for as long as you can!

I like it.... and I try to live by it, albeit, since I am no Mother Theresa - my ways may be smaller - but even a smile can change someones day, right?

So I guess this blog is about perspective - how you chose to look at things and then live them.

I feel pretty darn lucky for my life and all I have in it... I really do.

Sure - there have been some obstacles - but like anything - you learn from them and move on. Not live in the mistakes you've made or the symptoms you have, or the wrongs that have been done to you.

You hope that people will try to be as human as possible with each other, and try to see things from each others perspectives - without judgement - and with understanding, acceptance and empathy (if deserved) -
but that doesn't always happen.. The hills aren't always alive with the sound of music. Ship Happens and people get hurt.....

But as long as you know you did good, gave that person what they needed - when they needed it and were there for them when they reached out, then you can let go of the hurt done to you and OWN your Truth -  that it probably wasn't about you (why they hurt you, let you down, etc..) It was probably more about them... Grieve the pain - but then move on.  Not everything is about you... Let go and Let live.

Anyway - So like I said, sure I guess people could sit there and say or think about the bad, the end, the statistics.... But even then - I still say "Hell, If I'm dying - I'm still gonna have fun doing it"

We are all dying every day.... It's how we live that matters most.


Wednesday, March 23, 2011

Wednesday / Flare-Watch "11"



So just checkin in like I promised.....

The fatigue is still hangin around. It is almost like a hung-over spacey feeling in the morning that no amount of coffee or fountain pop can qualm. It seems to take me much longer to get going. Part of it is the fatigue and the other part is the "Stay Puff" swelling is hanging around too.

Once up, the pudge in my hands seems to dissipate. The sausage finger is almost back to normal - not quite there - but looking pretty darn good if I do say so myself. The ankles and hips are still aching and nagging at me. The heaviness in the arms is still present.... So I feel this need to rest my arms between tasks. The hand ache is still with me and the muscle weakness is still there. Legs are a bucklin' still on the treadmill - but I do feel like I am on the upswing physically - although emotionally, I did feel myself get discouraged this morning.

I found myself doing that "How long will this last" mantra in my head again and getting really frustrated by how groggy I was when I awoke. I actually fell back asleep and slept in which I try not to do. I try to keep myself on a pretty even schedule so that my sleep cycles and life cycles are managed pretty well - so I think that did a number on my psyche too.......to be THAT tired and not know WHY....

Although - that's the mind game of this disease, you know why. Your body is fighting an epic battle with itself and has no down time, so eventually somethings gotta give and the old bod MAKES itself rest. But I guess that doesn't stop the girl in you who gets discouraged and in that frustration needs the answer to Why now? How long? Did I do too much last week? Why this week and not last? When will it end? Will it ever end?

I guess that is just human nature - and I felt myself give in to it this morning - but once upright and vertical, with coffee in hand - I stopped the pity party and just took it slow, forgave myself and put my big girl panties on and did my thing.

Part of that thing is this blog - in which I promised to be better at charting and narrating Flares and Absences... so consider this the Wednesday Update for "Flare Watch 11"

Hope this finds you well and enjoying spring!!

Peace and Love ~

Stacie

Tuesday, March 22, 2011

Flare-UPdate / Sausage Finger


Love Word Play............but then I'm pretty dorky and love most things and if they make me giggle or laugh, even better.

Update on The Flare or as I like to say; Flare-Update:

My index finger continued to swell pretty badly all day Saturday to the point that I thought perhaps it was an infection of cellulitis.

I get swollen fingers - or what the docs call "sausage fingers" (I know, not a good visual, but that's what they call em") quite often, but this one took the cake (or should I say cow?)

This bad boy was so swollen I literally would have paid someone to show me how to pop it. It felt like the worst underground pimple you have ever had quadrupled in pressure and placed at the tip of your finger. Man... was it uncomfortable. The throbbing was nuts! And yes there was pain - but since I reserve the  use of the P-word for intense and excruciating - I will continue to just call it uncomfortable.

I have a pretty high pain tolerance. I was a natural childbirth kinda girl, tattoo's, piercings in my youth... Pain doesn't scare me and I handle it well as I respect the pain that those dealing with cancer or other atrocities must feel, therefore I try not to use the word pain unless I feel it is unbearable and leads me to the use of pain medication, which is rare. So rare, that after my hysterectomy I never once used the the PCA (patient controlled analgesia) provided in the hospital. I'm not bragging (if one would even think that's something to brag about) or one-upping anyone here, I'm just explaining my "norm" and my viewpoint of my pain index. 

I digress.... so this little bugger, the "pointer" finger as our school age friends call it was a real PItheA.
I really was considering filaying the bad boy open to relieve some of the pressure, or trying to pop it with a pin. I was baffled as I have had the sausage fingers in the past, swollen - pudgy little buggers that make bending your finger or digit nearly impossible so you walk around like a tour guide nearly pointing at everything you pass....... but this was different so I wondered if perhaps I was getting a calcium deposit or if I had an infection. but by Sunday it wasn't as angry as it was on Saturday. Still huge, red, swollen, throbbing and annoying as all get out - but seemed like it was slowly getting less angry. But so swollen that you almost did not feel the tip/top of the finger. A very bizarre feeling.

Monday was better still, although not resolved - but Mr. Pointer had calmed down quite a bit and seemed to be resolving his demons -whatever they may be.

Which brings me to today, Tuesday - Still puffy, pudgy with the tip hard enough to bounce a quarter off of, but 1,000 times better than where we started this journey. No puss, no infection, no calcium deposit that I see or feel as of yet, yet a really bad batch of sausage I guess..... I can bend him now, although not all the way... but I am no longer a tour guide and can crack my knuckle if I so choose. The finger is mine again. I presume the pudge and sausage-ness will last another 3-4 days and then it will hibernate again to show it's face another day.

I've never had one that bad before. I was tempted once. ONCE..... to perhaps think about taking a pain med, but I kept myself busy with movies and making fun of the damn thing and did not need to. Weird.
But, like I always say - this is one weird disease.

The rest of the flare;  My hands were puffy - so I had Mickey Mouse hands all weekend, although not too bad. My joints hurt, but again - not too bad. My right ankle is the worst and seems to get worse the farther we go into this journey. When it flares - it does hurt. I must admit the one time I did cry and drive myself to the Urgent Care for pain meds was due to ankle pain that was close to unbearable and made walking a real treat. I was given meds and I did fill them, took a bath and was able to get through the worst without needing to take one.

I guess I have a fear of being out of control w/pain meds or narcotics. Not due to my brother and his addiction or anything profound like that. Just to my own nature of needing to be in control and aware of my surroundings. My life - I never want it to be dulled and drugged. I want to LIVE every minute I have left on this earth and hear and be involved in all of lifes little miracles (my son and his dumb jokes, the pups, the crook of my hubbies neck) and in the back of my mind I wonder if there will be a future when the pain will get worse and visit more often, and I want to be ahead of the game allowing the lowest dose to control it when/if that time comes. I respect pain - and I don't want to build up a tolerance or indulge in escaping it when I know there is an unbearable pain lurking somewhere that will command respect when it shows its ugly face. That is just my way - Ive always been that way..... so I don't judge those who feel pain differently or chose not to feel pain at all. This is my path (Sadhara) and how I chose to walk it (there are may ways up the mountain).

Again - I digress. Ramble On......Hmm I wonder if Zeplin was talking about me? Back to the flare...
So Sausage finger from hell, Mickey Mouse hands, joint pain, the ankle monster, and yes folks, the fatigue finally hit. But again - as is the theme of this blog.....not that bad.

The fatigue this time came in slowly....like a fog. And once there, surrounded me like fog does. Fog doesn't hurt you - but when your in it, you feel stuck. It's inescapable. All around you and you can't see far enough ahead to know when you'll escape it. You move slower, more cautious, and spend the time your "in" it wishing it would lift so you could see again. Move freely again, see and feel the brightness. Everything is dulled by the fog. Sometimes things stop altogether until it passes. That is what the fatigue was like this time. A subtle intangible barrier that made things just a little more difficult, waking up left you zombie like for a little longer - coffee's effects were lost by it... but you could still move about. Just a little slower. You feel like you want to shake it off.... like a dog does water, only it's stubborn and won't shake. That is until it's ready to lift..... and it does.

Today, Tuesday - I still feel a little weighted down by the fog, although it is lifting. I had "Garfield: eyes this morning - the lids felt so heavy I wanted to lift them with toothpicks, but I am up and at em' nonetheless.
All in all I feel this one is coming to an end and I am starting to feel more Stacie-like every minute.

I must add though for the sake of being thourough and not complaining - that I also feel the very heavy arms and muscle weakness that comes along with a flare. Even blow-drying my hair takes effort and I must rest my arms before I move on to the flat iron.... which must be done since I have Rosana-Rosana-Danna Hair!!
My leg muscles feel sore-er after walking and while doing the treadmill yesterday (on low..) my legs buckled a few times. Kinda scary - but I am getting used to it by now. Then of course last but not least - the hand pain that is par for the course. The ache that feels as if it lives in all of the small tiny spaces of your hands that makes doing things just a little harder. As an example - While trying to straighten the rats-nest of straw that I like to call my hair - closing the Chi Iron was just a tlittle more difficult and hurt just a tad. So things like brushing, or dialing, or the simple things like typing - you just kind of "feel all the bones and spaces" if that makes sense? Sooooo if you have ever felt that or feel that now - You are not alone!! Its a Sclerie thing : - D
But all in all - I feel pretty fortunate and this one is that too bad. That or Im getting used to it... who knows.

And to celebrate, I am going to get my Mammogram at 1:30!! Whoop whoop....It's "Hammer Time"
Okay, I jest - but I sure am happy I have breast to get mammo'd. I'll take it and smile through it once a year.

Well, that's about it for now folks. Gotta eat some breakfast and get ready for Hammer Time.

Hope this finds you all well....

Peace and Love ~



Saturday, March 19, 2011

Saturday - Flare Up?

So I said I would keep ya posted if and when I had a flare - and what it felt like.....

Soooooooooooo today is a min-flare day and I am posting it!

I felt it coming on Thursday and Friday. Like a creeping shadow laying in wait. Friday night I went to bed and while watching TV any hip and ankle joints began hurting very badly. Then today - wammo - it's here.

It's not a bad one though, as I do NOT have the flu-like feeling, malaise and fatigue that will put you down for the day (week). Today is more about joint pain and puffiness. Some fatigue. Although for the record, I was able to clean my house. I just hurt pretty bad afterwards - lol!

Okay, so today's symptoms for those inquiring minds:
Ankle pains - very intense, more on the right - makes me need to limp to walk, and worse after sitting for a while.
Ditto with the hips, wrists, hands and shoulders. Joint pain and stiffness.
Puffy hands
Puffy fingers
Thumb swollen and doesn't bend all the way today. (how do those w/o opposoble thumbs do it?!)
Achiness

That's about it for today - Not that bad at all - BUT I promised I would write when I was feeling flare-ish, and I had a free moment so I did.

Actually right now, even typing is hurting a tad.... Not a good joint day. But I had a great run of it all week and was able to exercise and be on the go, so perhaps this is just a bit of over-doing it or a min-flare.

All I know, is I am grateful it is not too intense and that is all I have to deal with at the moment. It is a gorgeous weekend and I don't want to share it with a flare.

Well, that's all for now. My and small joints in my hands are hurting so I am saying Good bye and farewell for now.

Hope all is well with you!!

Peace and Love ~

Stacie

Friday, March 18, 2011

Catch Up




Okay - So as you can see from my Blog, I was MIA for a while there since my last post in December until things settled down a bit and we moved into our new home.

I guess for the sake of record keeping, being a good historian or curiosity for anyone who is "curious" I will do a quick overview in the "Life of Stacie" since December 2010.....

December was great. I felt pretty good. No real Rayauds issues other than needing to wear gloves a lot and the tag a long stiffness... but no true Raynauds attacks that so many others suffered this winter. I was pretty lucky.

I don't think I had too many flare ups either... I can't remember now exactly when or how many, which I am mad at myself for - as the whole point of me sharing is to help others "feel normal" - like I so needed/wanted to when I felt alone with this disease. I promise I will do a better job graphing when I have them and for how long they last.

The ups and downs of Autoimmune disease was most definitely with me from December to February, no doubt - but I kept myself really busy when I was feeling good. A friend of mine was off of work at the time, so we kept each other going. Did some home organizing and things... which was great. I was able to keep up during the day and just called it early nights.... Of course I had the stiffness and soreness that comes along with using the ol'Sclerie Muscles or over-doing it - But I was actually really good about pushing through most of it and just REALLY taking it easy at night. But for the most part, I was pretty active in December and January.

Which brings me to, what were you doing?

Well - here's the low down:

*Did some home organizing in December
*Got a concussion in December (Walked into a wall - Don't ask)
*Celebrated the holidays by doing as much "Griswold" stuff as possible - but said "Concussion" put a damper on about a week of my holiday spirit (BTW - Concussion - THE WORST - would not wish on my worst enemy. You feel out of it)
*Went to court - which is scary and emotional. Yuk!
*Family got the flu before New Years, so stayed home New Years Eve
*New Years Eve weekend we started the move into a new ONE STORY home (Renting)
*Husband traveled for work most of January, so I moved alone with my son
*Had a flare up after said "Moving alone"  : )
*Broke tiny bone in hand during move - had a flex cast. I was Gimp-master J
*Went through another "Stage" of acceptance - I think the IT hit me during this time & Im not sure why. I had been helping a friend through her issues since Dec of the year before, and she was stable on meds now and doing great - but that left ME alone to have to deal with me and my issues (not fix someone else) so I finally had to face my illness and not defer onto someone or something else. Very Difficult. VERY lonely.
*Our Bankruptcy was officially discharged : (
*We walked from our home ; (
*Was told by PCP annual labs showed an increase in my M-spike, so was referred to Oncologist
*Found out my Brother was homeless again living in a park in Las Vegas and back on drugs.... ; (
*My Birthday Jan 20th
*Was in the hospital for said birthday with bizzaro heart rate issues (No Bueno)
*A friend ended our friendship via text - Didn't need the stress : (
*Dealt with the above - lol
*Admitted to Hospital again due to heart rate issues
*Diagnosed with POTS - Postural Orthostatic Tachycardia Syndrome (the culprit causing said HR issues) : )

I Think that's about it - I think I handled myself pretty well considering when you see the list in black and white. Apparently a few did not think so - but I admit as I have in my previous blog - after that first hospital admit with my husband gone and being alone with my son - THAT was scary and was truly anxiety producing... but I am proud of myself for getting through it - albeit with the loss of a friend - but I got through that and the new diagnosis nonetheless and am better for it.

That's why I was not here to blah blah blog away at you much since December. I really enjoyed the heck outta the holidays and had a GREAT CHRISTMAS this year... oh it was a nice gift compared to my holiday last year after the blow of being newly diagnosed, but it was an amazing holiday.

I loved being active and getting myself and my life back again. With the New Year and the New Changes, the New House - I do feel like a new woman in a way. I think that once I absorbed the and dealt with the loss of my home and what that meant - having a new home to move into was a great way to start off the New Year.

I tell ya - I am a ONE STORY convert now though - Love IT! Easier to clean, easier to hang out together since its one floor, no stairs - Ive just been so much more active and alive since moving.

For those of you that don't know - Yes. We are "One of those" - If you don't live in Arizona, you may want to judge or not agree with our decision, but we are in one of the hardest hit areas in the country for foreclosures and housing crisis. Our home was about $150,000 under water and when we called the bank after the "Obama" plans came out - our bank pretty much told us to walk. It's pretty sad when your own back thinks your house is worth more as a right off - lol - but nonetheless, it was a difficult and emotional journey to come to that decision and then to follow through and actually leave the home. It really lent to some pretty introspective days and moments of melancholy - but I think we made the right decision. We will be able to buy another home in a few years and will start off with more equity than if we would have kept our other home. Don't get me wrong - tears were shed and it caused some serious ulcers, but it was the right thing. We consulted three lawyers and our financial consultant, the bank, and everyone pretty much said.... you re screwed - if this was a stock you wouldn't keep paying into it would ya? So..... that is the reason for the move into a one story home.

Along with that we did file Bankruptcy. After losing my Job and Getting Diagnosed with Scleroderma in November of 2009 it did a number on our finances. I think one of those alone would have hurt as - as "The Mayo Clinic" is NOT cheap - but to get a double whammy like that really set us up on the road to Bankrupt and Letting our home go. If I would not have lost my job, do I think things would be different - oh HECK YES - but I did not ask for those things to happen, they just did - that was my path to walk and I did. I just hope I walked it with grace and made the right decisions... Again - NOT an easy decision to come to and most definitely a very emotional journey. A roller coaster of emotions and fears to face... but once you walk through them and are on the other side, it is a load lifted off your shoulder and a pass to get your life back. It hurt to get through it - but now - in this moment, the level of stress in my life is so much lower and therefore I am functioning at such a higher level with my Disease and My symptoms. Amen to that!

I think that's about all..... Since my last discharge from the hospital I have been doing great. I have to see "The Wizard" aka - Mayo Clinic - in April for the POTS (which is directly caused by autoimmune disease)
I have been pretty active - doing at least 30 mins of cardio everyday if I like it or not. It is good for me and will keep me healthy and I must do it. It has been a comedy of errors to exercise with the POTS - but I am woman hear me roar!!! 

We have gone hiking, camping, off roading, and doing a lot of family stuff. I have mini-flares where I know its not a perfect day, but I won't let it get me down. I still make myself workout (albeit not the same as I did before all of this monkey business - aka The Good Ol' Days) but I work out my way now and feel good.

I have lost 6lbs on Weight Watchers.... finally getting the steroid weight off and cortisol tummy be gone. My thyroid medication was upped as I was still pretty hypothyroid - they found that while in the hospital, so I am sure that is helping with my weight loss too!!

My Ear - I followed up with the ENT and found that it is NOT Menierres Disease like he thought - but just good old "Autoimmune Ear Disease" - So basically my loss of hearing in the right ear and the bouts of dizziness and vertigo are - You guessed it - From the Autoimmune disease.

Ahhhhhh The Joys of your body eating itself.....  :  )

The MGUS - M-spike, well just one more doctor to the list. I now see an Oncologist every three months for labs.. nothing big and its no biggie - until it is. Right :  ) Until then - I live.

And lastly this POTS thing I keep talking about. What the heck is it? Well - that's for my next blog. Its very interesting and bizarre at the same time, so I hope you will read about it and educate yourself. Until then - I hope you are enjoying the beauty of spring.

""Sinyasa - Sadhana ""    -      There is more than one way up the mountain!

Peace and Love ~

Stacie

Thursday, March 3, 2011

Happy Birthday Timothy London Archibald


24 Years ago today I gave birth to my beautiful son Timothy London, and my life was forever changed.

I never knew you could love SO much or SO deeply until I met my son. I was 16 when I got pregnant and was 17 when I gave birth. Having my son gave my life new meaning and my existence new purpose. I was and am a better person for it and the world is better for having him in it. He has brought me joy and happiness every day since March 3rd 1987 and I am sure will continue to do so until I leave this earth.

My path may not have been the right one when I got pregnant, but having my son led me to the path I walked to get here today, which I think is a beautiful thing.

I love you Timothy London. Happy Birthday!! Scuba Kitty!!


Do they offer punch cards at the ER?




So part of the reason I have been MIA for a while is the fact I was in and out of the hospital. The dreaded Del Webb - land of the old and infirm - not fun.

I was admitted into the hospital 3 times since December (and 3 times is NOT a charm) and for a while there I was tempted to ask them to just let me pay rent instead of being billed... It was like a revolving door there for a while. But - for the record - it wasn't too bad and I was (am) fine.

What was happening is something called "Tachycardia" which is a fancy word for Elevated or "Fast" heart rate. Anything that stays consistently above 100bpm is considered Tachycardia. Sinus Tachycardia is when your heart rhythm is normal - but the heart itself is just beating fast. That is what I was having.

You can run into serious trouble if the rhythm is not Sinus (no, not sinus as in your head that causes the dreaded headaches) the sinus node of your heart. The sinus node is the heart's natural pacemaker. The sinus node consists of a cluster of cells that are situated in the upper part of the wall of the right atrium (the right upper chamber of the heart). The electrical impulses are generated there.


If you get a tachycardia generated from elsewhere within the heart, that can be considered more serious. In my case, I got lucky and was having the standard Sinus Tach. Yea Me!!

This tachycardia had actually occurred on a few other occasions before all this fun in 2011. I would notice that if I "over did it" and really pushed myself physically, I would seem to get dehydrated - and being dehydrated can cause an elevation of your heart rate.

I went to the ER on about 4 separate occasions due to an elevated heart rate. Ironically, these events were all after physical exertion of some time , albeit once it was just after power cleaning my house which to me seemed silly, but to the ER I went nonetheless since feeling your pulse race is pretty scary. At the ER I advised that I have Sclero and seem to get dehydrated easily and felt that the elevation of HR was due to dehydration. I was pumped with a few bags a fluids and was good to go, and I WENT..

That was that. No one questioned why I was getting so dehydrated so easily, and since the fluids would work and I wanted the hell out, I was always discharged to home. No biggie and the winter came with no further episodes or dehydration - that is until "the dreaded garage"

Ah yes, the garage. We moved into a new one story home, and while my husband was out of town I decided to clean the garage as a nice welcome home surprise. I decided to do this after walking 4 miles... But, in my defense, when your having a GOOD sclero day, you take advantage of the energy and you go big. So I did.

And MAN did that garage look pretty sweet if I do say so myself... the only problem was, once inside I felt that familiar feeling of dehydration, that heart thumping throbbing just walking to the fridge to get a drink.  I took the old pulse and blammo - there it was, the tachycardia again. About 130bpm resting. As I was alone and did not want to drive myself to the ER like a big dork, I started downing as much Gatorade as humanly possible - but to no avail and my heart rate stayed about 125-130.

I did drive myself to ER thinking I would get a few bags, make a few jokes about getting a punch card and be on my way. I didn't even bother to call my husband, mom or friends. Just went and thought I'd be out in time to get the kiddo at 4:00 - but this time I was wrong and the ER doc didn't like the fact that upon receiving fluids I was still tachycardic when I walked.. and decided to admit me... UG!

This admission, which I want to mention was on my Birthday - lead to no diagnosis and all the cardiologist felt it may be thyroid related as my TSH was way high and/or dehydration or infection as my white cells were high and I was discharged to home - fluid filled - again.

I was doing okay upon discharge to home, although a bit anxious... It's funny... things are nothing (which means there is NOTHING to worry about) until they are something.

So all the previous trips to ER caused no anxiety, no fear, no scare of increased heart rates or fear of exercising... because it was nothing, right. But when they admit you and hook you up to all that stuff, then its something - so admittedly, I was an anxious Annie for a while until my husband came home. But time heals all wounds and there I was again, back to exercising and living my Life, Until.........Admit 2

Ah, yes Valentines Day - apparently I like being admitted to the hospital on all holidays. First my B-day and now Valentines Day. Good times. Again - ER with the tachycardia, only this time there was no precipitating event that caused it - Just sitting on the couch watching TV and whammo - 180bpm which I must say, got me up and off that couch pretty darn fast and this time I was a happy camper to go to the ER since my HR was 180-190-ish. My heart was on a rollercoaster, but my body was in the Ford. Weird feeling. Not fun.

And again the ER Doc decided that was way to fast and this dehydration thing was flying anymore, so admit number two. Great!

Good news, this time I had an okay roommate. Admit number one I was roomed with Egor and she was MEAN. I was getting told on for everything (which was actually pretty funny) and my mom actually got escorted out of the room because Egor told on her too. Egor had no upper teeth, a compliments of meth mouth. She also loved the fact that she could order room service and let it be know to everyone that she could eat and order whatever and whenever she wanted. And, she did. If I did something to annoy her, she wouldn't say anything to me - she would walk past me, all 6 feet 7 inches of her and knock loudly on the door and announce to the nurses station what it is that I was doing or had done wrong. Yea - it was fun. But admit number two paired me up with Christine, who was only 35 and already had a permanent pacemaker. She was a great roomie and a wealth of knowledge about cardiac issues and not letting them get you down. But I digress....

Admit number two meant serious business on the "lets just not pump fluids and figure out why the hell she keeps coming back" front. So I was able to get a few tests done there, see a few different doctors and the leading contenders for diagnosis was; me possibly needing an EP study and a sinus node ablation or that this is all autoimmune related and is actually an autonomic issue.

Well, I dodged the EP study bullet as the only EP lab was in a different hospital and I did not want to get transferred. Plus I have heard both good (Christine - Roomie #2) and bad (Internet) stories about cardiac ablation.

The suggestion wasn't new to me, as I do get PVCs and PACs which can get pretty bad if I am sick, stressed or tired, and at their worst, ablation was suggested. Ironically and gladly, once I calmed down the PVCs did too - and me and surgery of any kind are not friends. They were at their worst during the time of my Sclero diagnosis and losing my job, so ummm can you say stress related. Needless to say - I am thankful and now when I get them, I don't let them bother me too much - but they are a PIA

Again.... I digress and ramble, as is the nature of Stacie.

So, this admit led to the suggestion of seeing a neuro about the tachycardia, as it is always sinus tachycardia and it seems cardiologist don't feel sinus tachycardia is a cardiac issue in and of itself, but driven from elsewhere. As my thyroid was now straightened out with Synthroid, my Echo and PFT were normal which determined the tachycardia was not a lung issue driven by the Sclero AND the cardiologist advised that structurally my heart looked good with no fibrosis, so he did not thing the Big S had gotten to the old ticker yet either - but did think the correlation could be an autoimmune or autonomic issue.

After this discharge I was a tad anxious, since the last episode was not precipitated by dehydration - but I could not allow the anxiety and fear to consume me, so I tried to resume a normal routine again and get back to exercise. I've been doing pretty good - but I do monitor my heart rate. I watch to make sure it is normal and if it gets tachy I will make it a point to up my fluids and sit down until it normalizes.

That is the weird part about all of this. My new normal set point has changed and even now, when not dehydrated I will get tachy when I stand and walk. I mean... its a doozy. I can be sitting with a normal resting heart rate of 60 or lay with my normal heart rate of 50 (yes - that's normal for me) and as soon as I stand, I bungee up to 110. If I walk I can get to 117-124 just walking to the fridge.

So basically every time I stand or walk, I am getting a cardiac work out - which if I do anything for a while, can get a tad tiring. I cleaned my house a few days ago and my heart rate got up to 160. Wowzers.. and I cleaned for a good 4 hours. I would rest here and there to get it down to 120-130 but it was still high. I make sure I drink a Gatorade and 100 ounces of water a day, so I know I am not dehydration - this is just the nature of the new beast - so I don't let it get me down or make me panic. I just go with it now.

If my heart rate does not return to normal after sitting a few minutes I have a beta-blocker I can take which will slow my heart rate. It does work pretty darn good, but it knocks me on my booty... and since my normal resting heart rate is already low - when I take the BB and get back to normal, it can drop my heart rate to the 40's which is also a wild ride. You get really tired and dizzy when your heart is on what amounts to Quaaludes. So needless to say, like my life with the Big S, my heart rate is now a roller coaster ride.

I've been pretty good and I did follow up with a neuromuscular specialist to investigate this autonomic issue and he had a few answers......but I will leave that for another blog.

This one is already a novel and I have to run errand and pick up the kidlet.... which I hope to do with a normal heart rate - lol!

Sitting here typing now I am at 59.

Let me stand for you...................106

Nice closing trick for you.

Thank you and good night. I'm here all week... try the roast beef and don't forget to tip your waitress.
Ba Da Bum.

MGUS - The fun of labs every 3 months!

Okay - Like I always say - when I go, I go big.

So I thought I would corner the market on Rare Diseases and Disorders.... Right!

As everyone knows by now, The Big S (Scleroderma) is pretty rare. But, my body decided to invite a few other friends to the "rarity" party - and among those invited was MGUS

Sounds pretty gross right. kind of like your clearing your throat? Or what comes out of your nose when you blow it.

MGUS is a bunch of letters that stand for Monoclonal Gammopathy of Undetermined Significance.

What the heck does that mean? Hell - my life is full of things with undetermined significance - lol

MGUS is basically a precancerous condition which has a 4 in 10 chance of turning into Multiple Myeloma eventually, and the longer you have the condition the more chance you have of it turning into myeloma. As I was young at diagnosis, I am at a higher risk because I have more years life expectancy in which to develop the myeloma. Multiple Myeloma is cancer of the plasma cells and therefore the bone marrow, as this is where plasma cells are made within the body.

MGUS is basically a term used to describe the finding of a monoclonal protein (Immunoglobulin) in the blood. A monoclonal protein is an immunoglobulin which keeps replicating itself and producing identical clones of itself. An immunoglobulins normal job in the body is to attack and destroy infections, they fight off the bad germs for us. We have several different types of these good immunoglobulins and they each have a letter for instance IGg, IGa, IGm. In MGUS one of these immunoglobulins goes crazy and starts multiplying clones of itself, leaving less room in the blood for the other immunoglobulins. We all need a good balance of immunoglobulins to maintain an effective immune system, when one immunoglobulin gets out of control and crowds out the others, the balance is severely upset causing the immune system to fail. The overproduced immunoglobulin is useless at fighting infection because of its crazy mutated state.

MGUS can be happily lived with as long as it is monitored and as long as the amount of protein stays stable. If levels of protein keep rising then the MGUS is not stable and it may mean that the condition is progressing towards myeloma, so more testing needs to be carried out.

I have been diagnosed with IgG Kappa type with a current M-spike of .5. It has risen since last year from .1 which is why I am now invited into the "labs every 3 months" category. My particular protein also has an Alpha-2 elevation. What significance that has or means is beyond me, that's just what the labs tell me.

Scleroderma has been found to increase the risk of cancer, as it is an immune system disorder - however- the blood cancer risk with The Big S is historically Non-Hodgkin's Lymphoma not Multiple Myeloma. They are both blood cancers - and both ARE caused from abnormal proteins in the blood, which I find ironic and leads me to the question of; Are the Big S and Monoclonal Gammopathy related or coincidence?

There is some literature and studies that feel Monoclonal Gammopathies may be autoimmune related, in that those with an autoimmune disease are at a greater risk of getting an abnormal protein ab in the blood.

Again, I find the particular cancer risk for Sclero being Non Hodgkin's and the monoclonal gammopathy needed to have MGUS very interesting??? Monoclonal gammopathies DO produce auto antibodies, but it is rare - but then, so is Scleroderma. Hmmmmm.....

I also find it interesting that a monoclonal gammopathy is a B-cell disorder and I have Centromere B antibodies. The centromere causes primary constriction of the chromosome - (region of specialized chromatin found w/in each constricted chromosome that provides the foundation/assembly/attachment ) Errors to centromere are catastrophic for cell and lead to aberrant division and chromosomal instability which ARE OBSERVED IN CANCER CELLS.................Again, Hmmmmmmmmm

But who am I - no doctor. Just a girl who wants answers and maybe a ribbon or something for going big with rare disorders.

Just to warn you - The party doesn't only have The Big S and MGUS - they also decided to invite POTS - but I will leave that for my next blog

At this point my MGUS is pretty low and I am stable... with the exception of the rapid increase this past year - albeit - the increase itself was large, the numbers are not - which is great and all is good.

I also did a skeletal bone survey which shows no lesions, also good. I am to do a 24hr urine collection to see if there is a certain marker that is only found in urine is present, if so - that may change the game a little - if not, then its "to the Lab" every 3 months with a smile and a lot of hope!

IF - and that's a big "if" there is another increase, then I will do a bone marrow biopsy. So when that number rises - that's whats in store. Good times, eh?

I think that is all on the MGUS front - I do labs again here pretty soon, so I will keep you all posted.

Fun Times with Blood Work - LOL!

Ahhhhhh Life is Good

Peace and Love to all

Tuesday, March 1, 2011

I'm Baaaack!!




Sorry for being MIA as of late!!

Thank you to everyone who has written to ask if I was okay (or still alive - lol)

I am both Okay AND still alive

Sooooo much to write about, so much to say, so much to share....

But for now - I am just logging in to say Hello and that I am back (and hopefully "better" than before) as they say

I will log in on Thursday and dedicate the time that is deserving and neccessary to write and catch up on things.

Hope all is well with everyone and that you are all enjoying the beginning of the spring season.

Peace and Love ~

Stacie