Wednesday, June 30, 2010

Mama said there'd be days like this....


Now that I have that song officially stuck in your head, I will start off by saying sorry for being MIA the past few days.

I was in a little funk. I think I was feeling a little overwhelmed, well a lot overwhelmed. It almost felt like everything, every stressor in my life decided to give me a right hook at the same time. I was bruised and beaten for a few days. But I am back in action.

Life is a strange thing. Well, I should say life is an amazing thing. A wild ride sometimes, but beautiful and amazing. Our minds work in strange ways. How we process things and when we process things.

I struggled with if I should write about this or not, but in the effort to be true to myself and my journey, I decided to do so. I promised the good, the bad and the ugly - and ugly it may get at times, so to hide the dark times is not fair to the whole picture or the person out there that may also feeling dark to.

I have already shared with you all that I do not do well when I am tired. Physical fatigue I can handle, but once the mental fatigue door opens, let the games begin and I think I let myself get to that point.

I had been feeling pretty good lately. When I said good, I don't mean the "old" good, but good for me now which I am grateful for. Good means that I am always a little more tired than I used to be, always a little weaker and always a little achy. But you are able to push past it and live. That is good. I call it "the underneath" - underneath my joints are always aching but mild enough to ignore, push through and enjoy life....it is when it crawls out from "underneath" that it is more of a struggle.

I think that is what happened. I was tired from a few weeks of going. We had a few garage sales (That rocked!) and I was doing more than usual - so I think I got fatigued. When I get overtired, I have to admit I get weepy. So I was tired and weepy and IT crawled out from underneath.

My hands were in a lot of pain. The bones were hurting. It felt like someone was pulling my tendons into themselves. My ankles were really on fire. But I was still ok. We had plans to go bowling on Sunday and then I had my first fear moment.

I don't even know how to describe it. Rationally I know that I have been dealing with this diagnosis since October (9 months) but for some reason, in that moment my ego had a reality check and I was afraid, "What if I can't hold the ball". I don't think my fear was of embarrassment, because with friends (true friends) I rarely get embarrassed. And I don't think I was afraid of  dropping the ball on my toe..... I think the fear was perhaps, this is my first extracurricular "My Life Has Changed" moment.

I know my life has changed. Life is always changing, and I have already grieved and let go of a few things, but this was my first possible "extracurricular" loss that I would face.

It just so happened that our friends we were going with got sick and we ended up not going, but something was triggered and I had a "I don't want this anymore" breakdown.

To be honest, I think it was a culmination of many things. I was tired, my hands hurt, I was feeling down about my weight, and life issues.

Like many, we have been affected by the economy. I have been out of work since October and we have finally - inevitably drained our savings (which ups that stress a notch). We are also facing making some serious decisions about our home. We live in Arizona, which means we are so upside down in our house that my backyard is in China (about 150K), the medical bills are now spilling in, so financially the stress is there. I have been handling it pretty well, I thought, but like I said - I think I had a reality moment and the rose colored glasses slid off.

I also heard some news about my brother. I love my brother so much, and believe me when I say he has a beautiful heart and he is a good man. But he is a good man with a horrible addiction to meth and alcohol. I am usually pretty good about not allowing myself to become to emotionally vested in the choices my brother makes. They are his to make. 

I spent many years of my life trying to save him. I spent many years of my life taking care of him,  letting him live with me, getting him jobs and trying to get him help. I love him. But I also love myself and my family, so I learned to not allow his life to overwhelm mine. Which works, until you hear from him... then all the emotion comes flooding back. It is heart breaking.

I was able to talk to him and find that he is MIA again and "living" in Portland. When I spoke with him he was higher than a kite and working on reading peoples minds. All I can/could do is tell him how much I love him  - because the cold hard reality is, that may be the last time I speak with him. I am not trying to sound like an after school special here with the melodramatics - sadly, unless you have a loved one who is homeless and an addict, you will never understand the pain it causes. It is always with you like a thin layer of dermis you cannot shed. Always the worry in the far reaches of your mind.. I hope he is ok. It is a hard thing to describe - Grieving for someone who is not dead yet - but that is what it is like. The far off reaches of your reality always waiting for "The Call" to tell you that he is no longer with us.

I think the sadness created by the scab that was pulled from hearing from my brother, created a downward spiral effect into a few days of melancholy darkness and perhaps even a little pity party.

Like I said, once that door crept open a little - it allowed a lot to come through. I think I just needed to grieve.

I have had a pretty crummy year, and I think my mind - for whatever reason - decided to hit me in the face with an iron skillet and facing it all at the same time sucked.

I lost a friendship this year, and that wound still stings. I wept for my parents who had their own losses the last few years, I wept for my brother, I wept about our financial situation, I wept about my fear, I wept about my weight and body image, I wept abut my past, and I wept because I am sick...and this illness is NOT going anywhere. 

I say pity party, not because I do not validate that I have a few heavy things going on right now, but I think I had a hissy fit and in a Marsha, Marsha, Marsha moment was pissed knowing that the Sclero will always be the cherry on top. I will always have life issues and stressors to deal with, but the Sclero is always going to be there making it all feel just a little bit more overwhelming.

For whatever reason, because I try to trust that everything happens for a reason, I was supposed to just feel this weekend. And BOY did I feel.

I am still struggling with a few things, or processing I should say. I have a family reunion vacation coming up in July and I must admit I am feeling nervous about my weight gain. I have two beautiful, very thin sisters.. so due to some issues in my past, I have body issues and it is one of my demons. I feel upset that I needed to be on steroids which, along with decrease in my energy and strength has caused my weight gain - so I am trying to just accept and love my NEW self. It is a lesson in letting go and a practice. Practice meaning, like Yoga - will never be mastered because there is always more to be learned.

I also realized I am nervous about some of the outings on that trip. We plan to go to Washington and what if I get too tired. What if I can't keep up? What if I have a flare? What if I have a swell up? - But again, I am learning that I have no control over what may be and I just need to live IN what the day may bring. I am a self professed control freak, so letting go and not being able to control is hard for me!!  I also think part of me is afraid of it being public. This will be the first time with my sisters since I have gotten sick, so I have changed, but perhaps the expectations haven't? And I hate causing scenes (that kind anyway - I myself do like a funny scene) and I most certainly don't want to be the reason who don't or can't do anything. I hope that makes sense.

Anyway, L-O-N-G story short, that is what I have haven't written in a while.
I am human and I had dip into the deep blue sea..like we all do. And I am most certain I will have a few more dips and dives along the way. I am learning. Man are there SO many lessons to learn.

Well, That is all for now.

There'd be days like this my mama said....

Peace and Love ~

Stacie

Friday, June 25, 2010

Hi Ho, Hi Ho, It's off to the Doc I go.....


Doctors Appointments... Good Times.

Well I had a neurology appointment for a follow up NCV (nerve conduction velocity test).

Apparently my last test was abnormal with findings of diffuse sensorimotor demyelinating polyneuropathy, In other words, the test showed that some of my nerves were either absent or slow.

Autoimmune diseases do not discriminate. It is most definitely an equal opportunity destroyer. What seems to be happening is the autoantibodies are now feasting on the myelin sheath of my nerves causing neuropathy.
Basically I am a walking, talking, Golden Corral Buffet.

But the good news was my repeat NCV showed some improvement!!

I am not sure if I shared or not, but I seem to be having some issues with malabsorption. I have been struggling with a vitamin D deficiency, as well as, a fluctuation B12 deficiency. Because the issue probably lies within my small intestine I was given B12 injections to administer weekly to correct the deficiency. I was also given HIGH doses of vitamin D supplementation (50,000 units daily) to help correct the vitamin D levels.

A vitamin B12 deficiency can exacerbate or even cause neuropathy and/or nerve damage. It seems that my weekly B12 injections apparently caused some improvements to show on my NCV. My last lab test showed a normal B12 level so I had actually halted the injections for a while, but he advised that with my issues and with the nerve damage, that I should continue with the injections indefinitely - even if my lab levels are normal. Some of the damage is already done, but it seems there is hope that ongoing B12 may halt or improve some of the other issues.

I was advised that with the Big S, nerve damage can occur in the extremities causing numbness and pain. The damage can progressively worsen and lead to ulcerations. Who Knew?

Anyway - all I have to say, is don't sweat the small stuff and if all I need to do for now is grab and stab..Bring it on baby!

Life is Good ~

Going back to Cali........California Here I come.....

Happy Friday!

It's a beautiful day in the neighborhood. Life is good!

We are heading into California on Saturday for a quick visit with family. We have a very special One Year Birthday party to attend which should be lovely.

I haven't done a 6hr car trip in a while so I hope I do well. I am thinking a lot of stops to stretch, which I am sure will drive my husband crazy.... What I am talking about, I already drive him crazy on car trips.

I am actually demoted to the back seat of the car with DVDs so I can watch movies and be distracted so I don't critique his driving or wear out my air brake!! And he is used to my walnut size bladder, so what's a few extra stops if he is already annoyed.

That's it for now ~ Just a quick hello.

So I guess all there is left to say is, "Wally World or Bust"

Roll em' up,

Stacie

Wednesday, June 23, 2010

I am woman, hear me snore.....

and snore, and snore........

Ah yes, the fatigue. I know I have said it before, but the fatigue for me is the hardest part to get used to with this disease.

I went from Go Go Gadget - always on the run, to Mr. McGoo...

What I have come to realize and to accept is that you just can’t do it all anymore. And, when it all boils down to it, that's okay.

I have incorporated what I call "The Neapolitan Concept" into my life. I now see my life in three layers, like Neapolitan ice cream.
 If I do something in the morning (strawberry) and have plans in the evening (chocolate), I need to rest in the middle of my day (Vanilla).

If I have a busy afternoon and have plans to meet friends for dinner, I know that I must rest in the morning. It works for me. But, it took a while for me to figure it out and even longer to accept it.


I think I used to fight it. I used to try to do everything the same and I would end up having Holiday Inn days.


What is a Holiday Inn day you ask.. well that’s what I call it when I awake so tired I want to cry and I just want to check into a Holiday Inn for a few days and hide from everyone and everything because I don’t have the energy to function.


I realized I just didn’t have the energy to sustain myself for the week if I pushed to hard. I used to train at the gym with a trainer.. which was great, but I would train hard! And then I would come home and be a mom, a wife, a cook, a housekeeper and the list went on.


By the end of the week I would be so tired and my muscles were so weak I wasn’t even able to hold up a hair dryer. Literally. During that time, there were periods I was so tired that I would sleep through my alarm and not even make it to the gym. I was tired - actually scratch that, I was burnt out. I only had so much gas in the tank and I need to find a better route to use it so I could make it through the week.


I ended up stopping my personal training and opting for a more gentle exercise routine, and Wala! I feel so much better. I realized that I really needed to take a good look at where I wanted (and needed) to spend my energy, and the answer was with my friends and family and not at the gym.


So I stopped the training and implemented my Neapolitan approach and so far so good. Don’t get me wrong, I do have Holiday Inn days. If I push myself too much one week or over do it- but they are fewer and farther in between.

So for now, I am proud to be woman - hear me snore.


Hope this finds you all well and well rested



Peace and Love ~



Stacie






Dharma...

Why ScleroDharma?


In Hinduism, it means one's righteous duty. And I felt that it was my duty to share my story and journey with other newly diagnosed or diagnosed persons who were feeling scared, alone or uncertain that way I did when I received my diagnosis. There were some amazing people that I met through Facebook - perfect strangers - that honestly saved me. I would read the Internet and get so scared and I would then post questions and concerns that were answered with such Kindness... and from that experience, I knew that I also wanted to help make a difference to someone else.

The other meanings for Dharma in Buddhism are: Law or truth and the teachings which lead to enlightenment. Not that I am going to be so egocentric and say anyone will reach enlightenment after reading my blog..... But perhaps loved ones or friends of a Sclero patient may be enlightened to the struggles that some Sclero patients go through or even see things in a different light coming from a stranger, rather than their loved one.
 Sometimes people don’t want to share, especially the bad, and even more so, those with a chronic illness. I think sharing about not feeling well, when it happens so often, makes you feel like a whiner, so I know at times I would rather not share - but at the same time wish that the people who cared about me understood. A dichotomy I know... but ironically Scleroderma kind of is an oxymoron. You may not look sick - but boy do you feel sick.

And lastly...the truth. Ah yes, the truth. Sometimes we don’t want to hear it, do we? Our loved ones may not want to hear that we don’t feel well or that we are afraid to die. Or are afraid the next cough will turn into bronchitis and put us in the hospital for which we may not return. Or the next cough may be the first signs of PAH or worsening fibrosis..But then to be fair, WE may not want to hear the truth either. That are loved ones are just as scared, that it is hard to deal with a person who has a chronic illness, that their lives have changed right along with ours because of this disease.

So I think Dharma was a perfect name for this blog. It is my hope that  I may help to spread the truth about this disease and all of the annoying mundane and fascinating things that go along with it, so that I may help enlighten some about how their loved ones may feel or to validate a fellow Sclero that what they feel is normal and "ok" and lastly, I feel that it is my duty to share whatever I can with others because we are "In this together"

I feel the most appropriate salutation for this post is:

Namaste ~

Stacie

Peace ~ Love ~ Joy





Friday, June 18, 2010

Cuz thats how I roll.....

With the punches, that is!!

One of the things I have learned from the Big S is to roll with the punches.

You never know what each day will bring, and every day you wake up its a new adventure.

Some days you feel great, good, okay...and others without warning you can be down for the count.

It makes keeping a social calender a tad rocky, but that's why we write things in pencil not pen, right! : )

It is a wild ride. You literally will be able to do something one week and the next you cant. Like I said, a series of loses and readjustments... so if you cant go with the flow, you'll just go mad.

I used to be quite the Pilate's princess if I do say so myself, and now... there are days when I cant do even the simplest moves and there are moves I cant do at all anymore.

At first I used to get sad and/or mad at myself, but like Yoga - this Sclero thing is a practice. It is always changing, your always progressing and it is never mastered.

I know that now I need to awake a few hours earlier to get my hands going (on my bad hands week) which is fine. I am no longer an early bird and that's ok.

I used to go to the gym every morning early, but it became to hard and took a tad too much out of me, so now I go at night

I let things go alot and I try not to sweat the small stuff....

I may have the most ambitious of plans for Saturday on Monday morning, but by Friday night if I did too much I may not be able to follow through.

You have to have very understanding friends!! : )

Oh... The Bell. That's dinner. Signing off for now, ill be right back!


Thursday, June 17, 2010

The Wizard (AKA The Mayo Clinic)

Ahhh so I took the yellow brick road (otherwise known as Loop 101) to the Mayo Clinic and then the real fun began.

I got to meet OZ - The knower of all things Scleroderma.

The Mayo Clinic Scottsdale is actually a Center of Excellence for Scleroderma. Lucky me that I lived here in the Ol' AZ. My house may only be worth 100 bucks, but I lucked out in the rare disease department.

First I must say that Dr. G (OZ) is amazing. He is a wonderful caring man who has not been jaded by years of practice and who truly seems to care about the plight of his patients. He always holds my hands during or after our consults. He is so cute. Anyway...I digress

So as you can see 2009 was not my best year. From January to September I playing musical X-ray, and then October was when my world crashed.
I was officially diagnosed with the Big S and I lost my job. That's one good Bingo!

So The Mayo....ahhhh. Well, they make one hell of a tuna sandwich.

October, the fun of invasive testing. Memories...
So I saw OZ who ordered a bunch of tests. Basically I spent most of the month of October traveling the yellow brick road to the Mayo. I had a test every Monday and a consult and/or test every Wednesday. Good Times.

One of my first tests was the PFT - Pulmonary Function Test. Which is blowing through a straw in a closed glass coffin. It actually wasn't bad and it was necessary to get a baseline reading of my lungs. Scleroderma can cause fibrosis of the lungs and/or pulmonary hypertension...or PAH which leads me to my next test - The Echocardiogram.

The Echo is done to make sure there is no valve damage or pulm hypertension. Scleroderma can affect your heart too. For some added cardiac fun, I had an EKG too. Those were both painless and fear free. Peace of cake! (yes peace was used correctly..for me anyway)

The next test was called an Esophageal manometry. Ohhh lets just say, we were not in Kansas anymore. Oh my goodness gracious - If I never have to do that again I will be one happy Sclerie!

So the EM. Well, first you get a qtip with lidocaine shoved up your nose to numb it. It has to be pushed up there gradually because of course until the lidocaine is there, you can feel it - and well, it hurts. So once the q-tip is almost lost forever up my nose and can be shoved no more, then the real fun begins. A wire with a special tip that can measure pressure is then guided up your nose and curved to go down the back of your throat. If your not gagging now...you will be. Once it hits the back of your throat near your uvula the gagging begins. Its a reflex, you can really help it.. and once you start to gag, you cant really stop. The more you can, the more prone you are to throw up - which is what I did. When you throw up with a wire down your throat, you kind of think your suffocating because you can feel it, so I ripped the wire out of my nose.. which meant the fun began again. Up through the nose, down the throat and lets the gags begin. After three times (third time is a charm) I learned that if you pant like your in labor, you cant gag as much and the wire went past the uvula and my throat into my stomach and was then taped in place. Again..Good Times!

Once it is in place you get the added pleasure of getting to drink water and swallow while the machine reads the pressure within your esophagus. Swallowing anything with a thick wire down your throat - Not Fun - but nonetheless, I did it and as I swallowed my last bit of water the Chariots of Fire theme went off in my head because I was about to hit the finish line of wire free freedom. Once I was done swallowing, said wire was then pulled out fast from my nose. That didn't feel too bad actually. I guess the only other person who would know what that felt like who has not had an EM would be that weird kid in school who could swallow a spaghetti noodle and pull it out his nose? My husband and my new friend were waiting for me when I came out. I must have looked like I was put through the ringer because they were kind of giggling. Lets just say I should have worn a bib and apparently a face mask because there was schmootz everywhere.

After the EM was the Gastric Emptying study. Well.. anyone who knows me - KNOWS I do not do eggs. Do NOT do eggs. So for this study you come fasting (aka hungry) and you are asked to eat the most unappetizing looking egg thing cooked with radioactive material and milk (I also don't do milk) So for me, this was like my worst meal nightmare. You have to gag down every last bit before you are aloud to leave and they do check....Yuk. You then just hang out and come back every 30mins to an hour for an Xray of your tummy to see how fast/slow food moves through you.

The PH Study. Ahhh another "Fun with wires" day. So for this study you get the qtip up the nose again, although this time I am a pro. No Sweat - Bring it on. Then a smaller smoother wire is guided up your nose and down your throat into your tummy. This time because the wire was smaller or because my gag reflex went on vacation after the last wire fiasco, I did not gag and the wire went down relatively easy (which by the way is such an odd thing to say) The wire is then taped to your cheek and neck and you are given a portable walk man looking thing that will record any reflux - GERD events you have for 24hrs. Basically you walk out looking like MR. Roboto... You have a wire going up your nose for the world to see. I owned it though... I rocked that look like nobodies business and went power walking. After 24hrs I yanked that bad boy out myself and dropped off the walk man at the Mayo.

Other studies... My Manic Mondays. Lets see - I also had a holter monitor, CT Chest, EGD (No fun...forgot about the EGD, although Versed was my friend and once they knocked me out I don't remember anything). I also had an esophageal dilation during my EGD (they stretched my esophagus because of difficulty swallowing - Scleroderma can cause narrowing of the esophagus and diff with swallowing) I might be forgetting a few, but I am sure you'll forgive me as this post is a novel already. you get the drift....every Monday in October was spent at the Mayo ALL day doing tests. Enough said I guess.

So after all of the above fun - The final results came in and the winner was Scleroderma!

My current stats are:

At this time I have the lung nodule. One doc says Sclero related, one does not. Regardless it is there and I have to have a CT every 6 months to watch.

I have some mild mild mild lung fibrosis, but my PFTs look good.

My Echo was good. I have NO evidence of PAH for that I am so grateful. The prognosis is not good with PAH, but I will have to have an Echo every 6 months. If my numbers change than I will have to get a Right Heart Catheterization

My Kidneys are great. I was given a BP machine to monitor my BP daily as us Scleros can get something called Sclero Renal Crisis - which is an immediate life threatening elevation of blood pressure without warning, so I just get a Urinalysis every month to check for protein in my urine and check my BP daily and I am golden.

My EM revealed I do have esophageal dysmotility - I failed 30% of my swallows, but I look at that like "Hell - that means 70% were good!"
That basically means that the Sclero has gotten to my esophagus and I just have to watch it. Some people do okay forever and some people lose function completely and need feeding tubes. I have faith that whatever is suppose to happen for me will be. Right now I can eat - so I do and I enjoy EVERY minute of it!

My gastric emptying study revealed I have some delayed gastric emptying. What that means is sometimes I can eat normal volumes and sometimes I eat small amounts and my tummy feels like it is the size of a walnut. Basically food does not move through me as efficiently as it is supposed to, so if it stays in my tummy - then there is no room for anymore food. This also causes bouts of constipation with bouts of diarrhea and gastroparesis. It is what it is. I feel lucky. I have a Sclero friend that lost all function of her GI tract and will have accidents and another that has GP (gastroparesis so bad she doesn't eat) God Bless you Shari and Janice!!

My PH study was fine.. No heavy duty reflux episodes but I have been prescribed a prophylactic PPI in case...for preservation more than symptoms.

My EKG and Holter were good. I was having bouts of palpitations. BAD ones. My EKG was like one big long PAC - PVC - but ironically, when that thyroid nodule was found, I was placed on Synthroid - Cytomel and the palpitations stopped. FATE maybe... I laugh about my Old McDonald Nodule song.. "With a nodule here Nodule there, here a nodule, there a nodule" but - in finding that nodule and getting on meds to shrink it, the palps were stopped. Again, I feel lucky!

Which brings me to "The thyroid nodule" - basically I am on the above meds with a surveillance ultrasound every 6 months to ensure that it does not grow. If it does, then I get surgery - But for now its just hanging out enjoying the view. The brain nodule is also just hanging out enjoying my brain matter... Depends on who you ask if the nodules are Sclero related? One says yes, one says No - but is open-minded to the fact that when you have a wacky immune system anything can happen, so I just know they are there and grateful they are benign at the moment.

Sclero is a rheumatological disease as well as a connective tissue disease so essentially ANYTHING can be affected. I guess the easiest way to think of it is like Lupus and rheumatoid arthritis but a tad different and a tad worse. I get tired like nobodies business at times, so much so it hurts. I know that may sound weird, but the fatigue is tangible in that it envelopes and encompasses my entire body into my soul and I am done. Out of spoons.

I also have joint pain, at times symmetrical like RA but it can also be asymmetrical too. Right now my Rt ankle, hips and rt shoulder hurt the most. But its not prejudice, any joint will do ... so each day is a new journey. When my hips are bothering me and I walk, my husband calls it my gangsta walk. Nice... Like it.

My hands hurt the worst. Sclero really affects the hands and will at times disable them. They can become curled in on themselves and become disfigured. Mine have not curled. They just hurt. It does feel like something is inside my hand pulling it in on itself, if that makes sense. Almost like they are trying to curl? I wonder if its that start of something, but right now I can still open and close them. Some days its harder than others. Today was a bad day. They hurt so bad I wanted to cry... but I didn't. I am woman, hear me roar..... just cant do everything with them sometimes. Like this post I have had to rest a few times and I know tomorrow I will feel it (But its worth it)
My best friend knows when I am having a bad day and will help me open things, or sign credit card slips or whatever. I love her for that. She doesn't make it obvious or cause a scene, or even ask... she will just discreetly take the card slip, sign and hand back to whomever without any issue. It makes my heart melt... I am so grateful for that too.

My hands will swell sometimes and sometimes a random finger or two (maybe a toe or two) will swell really badly and look like a sausage. I cant bend them when they get like that, but that just happens sometimes.

Wrists, tendons, any tendon will become inflamed so I get a chronic tendinitis if I do too much... basically - Anything than can become inflamed, will with an autoimmune disease, so ?

I do labs about every month or two months for now to check my kidneys, liver function, CBC (platelets and such), and my panel. Right now my ACA went down, one doc says it was because of immunosuppresion and one says its a fluke and its a moving target and means nothing, but I want to think its the meds!

Lastly, right now I am just taking my thyroid meds for the ol' nodule, steroids as needed if I get a bad flare up or having shortness of breath, B12 injections once a week (malabsorption), Vitamin D, and Methotrexate (low dose chemotherapy) injections once a week.

That's about it.....and you get stiff. Like I am now....from sitting here and typing my own personal War and Peace!

Which means I am going to sign off for now.

I will end by saying I did not have the best day today, but I still feel like one of the luckiest people in the world. I love my life, I love my kids, I love my husband and I love the beautiful friendships that I have made during this journey.

Goodbye for now and I hope this finds you all happy and well.

Peace and Love ~
Stacie




Comedy Of Errors

Well Hello and Happy Thursday. My 2nd official blog... I am a bloggin fool now.

So I promised I would finish my Sclero Journey with you, which is what I will do.

I call this comedy of errors because it was... It was almost funny in a Kooky McKookersville Kind of way. During this journey to find a diagnosis I would literally be calling my sissy every day and say... "well they found this now, and now I have to go in for this test".

I would walk in for a CT scan of the abdomen come out with a lung nodule and need a PET scan, which would find a thyroid nodule and need another scan. I'm serious..it case Crazy Town. I would walk in with one thing and come out with 4 other issues.

The only good thing that came out of my "diagnostic journey" is that me and my sister became very close. I don't think I would have made it without her. I really don't think my friends at the time understood how stressful it is to go through ALL of that testing, nor do I think they really even believed that one person could have ALL that drama. Believe me... I get it. It was almost unbelievable to me. But that feeling sucks when your tired, scared, know something is wrong and you feel like the people closest to you are kind a rolling their eyes going... "now you have that TOO?"

I know my body so I knew that something was wrong but when you don't look sick and can still do things - people don't really take you serious. I think the vibe I got was that I was a hypochondriac which makes going through all of that testing and stress all the more lonely.

Anyhoo...back to the comedy of errors. So it was after the walk and I just couldn't recover which is when I went to Dr. Feelgood for my yearly labs and a surveillance MRI. I have a past history of a benign prolactinoma from 1999 for which I am/was supposed to have bi-annual MRI of the brain.

Of course with a history like that and when I began to not feel well I assumed it was the tumor coming back and causing a rukus. I was actually prepared for that to be the culprit and call it a day. Been there - Done that.

Well, the brain MRI was okay with the exception of a new nodule (nodules are now my new theme song..you will see) so I was sent for some labs, which of course came back abnormal, so I was referred to an Endo who then ordered a CT of my adrenals to rule out an Endocrine Tumor, which of course revealed no tumor, but did reveal a lung nodule, which in turn led to an order of a PET scan which did not light up (Thank god) but did reveal a thyroid nodule, which led to an MIBG scan which came back clean - but in turn led to an ultrasound which revealed an enlarged liver and spleen which warranted more labs.....and then my positive ANA was found.

Soooo I guess you can see why "Nodule" is my theme song and why my friends probably thought I was a drama queen hypochondriac and why me and my sister spent SO much time together on the phone. Like I said it was almost funny...no check that, it was funny when talking to her. I would call and say, guess what they found today!

So after my trip through the journal of radiological medicine and clearing all of the incidental findings... my MD of course focused on my positive ANA and that is when I was referred to the Rheumatologist.

It was the Rheumatologist who then ordered the Reflex panel (a test that shows what type of pattern the cells have) which came back with Centromere antibodies and then the real fun began!!

I was off to see "The Wizard".............







Wednesday, June 16, 2010

Sclero-Rookie

Hello there to my friends, fam and anyone reading.

I am new to this blog thing and this is my first official blog post. So forgive me if I make any mistakes or any Blog faux paus. I hope to try to post once a day, but if that proves to difficult - than I promise to post at least once a week.

I am starting this blog in the hope that others with Scleroderma will find it and be able to see what my life is like with this disease.

When I was first diagnosed I was constantly wondering..."Is this feeling Sclero" or "Do others feel like this" or do others "struggle with this". I must say you feel alone because your sense of normal has changed, only you are not sure what your new "Normal" is with this disease.

This disease is so rare, that not many people have it, which adds to the alone feeling as there are not many to talk to about how you feel, or are supposed to feel, or validate that what you do feel is okay.

What I have found is that your new "Normal" is always changing anyway.. as this disease is a series of losses and readjustments..which in a way makes it not only a physical disease, but a mental one as well.

Although I suppose any Chronic Illness does that. Chronic Illness has a way of changing your life and your life priorities... so i try to do it with a smile and a sense of humor which I hope you will see when I begin to share my life with you.

Disclaimer: I can be very sarcastic... so you have been warned : )

Well I guess I will share a bit about myself and my stats. I am a 40yr old female and I live in Arizona. I was diagnosed with Limited Systemic Sclerosis/Scleroderma in October of 2009.

I knew something was "wrong" after I participated (kicked ass) in the Susan G Komen Breast Cancer 3-Day walk. I felt like I could just not recover. Granted it is a 60 mile walk in 3 days, but I was an extremely active person before. I trained for the walk (10 miles day) and it was already my habit to work out at the gym 5 days a week, so physical exercise was not new to me. This fatigue was different. I felt SO tired that I wanted to cry. The fatigue was almost tangible and so severe that it almost hurt to be tired.

I remember feeling like a rock start if after work I was able to do and fold a load of laundry. There were days when I could not clean my house. I would call my friend (at the time) and tell her "I just cant do it" - I think I was almost searching for validation that it was "okay" and perhaps that she had been there too....

Then I thought that my fatigue and joint aches were depression. I do NOT do well tired. Believe me, I am "Type A all the Way". So as simple as it sounds it was the fatigue that brought me to the doc.

My doctor (I call him Dr. Feelgood because he is so nice) was open minded enough to listen to me and hear me, and for that I am forever grateful. He did some lab work and my ANA came back positive. I was then sent to a rheumatologist who did a reflex panel which came back with Centromere antibodies - and from there sent to the Mayo Clinic where I was put through the ringer - and Wala! The rest is history. Limited Systemic Scleroderma.

Well, actually that's not all, but I have to put some stuff on Craig's list, then I promised the kiddo a movie, so that's all for now. I will post next about my Mayo Journey. Wow - some of those test were no picnic!!

Anyway - Bye for now.

Peace and Love

Stacie