Can I stop my hands from getting deformed?

A new very large knot has appeared on my left hand to the left of the small tumor. It’s probably triple the size.

I’m at a loss here. I really don’t want my hands to look like my grandmother’s did.

I take all my meds. I do all the hand exercises. I do everything the doctor tells me to and I’m over here freaking out because despite it, I feel like I’m still suffering permanent damage.

I’ve been dropping things a lot more lately. I picked up a candle at the store yesterday and it slipped right out of my hand and on to the floor. Broke into a thousand pieces. So embarrassing.

I dropped something else the other day at the grocery store that was glass. Does this get worse?

It’s gotten to the point I have a difficult time doing simple things. Opening a coffee mug or the lid of my gas tank.

And the pain. I try not to complain, but it’s getting worse. It’s excruciating at times. Lately it’s this strange burning sensation. Also, pins and needles. And then there’s the skin crawling, shooting pain up my arm and that’s just my left side. My shoulders aren’t much better.

Maybe the CT scan/MRI will tell more and ease my mind. 

I’m just venting. The stress of my health, trying to raise these boys alone and trying to finish school while working full time …

I guess I just sometimes get completely overwhelmed. I can’t tell you how worried I get. I don’t want my hands deformed. I don’t want my future grandbabies afraid of me because of them.

My hands are my livelihood. I’m a writer.

Tomorrow’s a new day. I’m certain of that.

Can anyone else with either RA or Psoriatic Arthritis or Mixed Connective Tissue Disease tell me what I can do to save my hands?

Until next time friends.


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Wrist surgery for tumor, cyst

Has anyone else had surgery post R.A., MCTD or Psoriatic Arthritis diagnosis?

I may be headed that direction.

I have had a small tumor/cyst in my wrist for at least a year now. They have tried steroid injections right next to it and have tried aspirating it several times with a needle with no luck.


Above is a photo about 3 hours after a steroid injection and aspiration. The knot never got and smaller than this and is at least twice this size now.

Here’s a photo a couple of days later:


And here is about last week:


In the photo above you can see where the swelling has extended, which is how it has been for months.

Ok … now here is a photo of both hands so as to show you a comparison.


My rheumy upped my dosage of methotrexate from 6 pills to 8 pills (take all at once) and I am still on my Enbrel injections along with Gabapentin (3 pills a day) for nerve damage from the shingles. Also still on medication for my Hashimoto’s and take Vitamin D (prescription strength) and Folic acid.

Sometimes I feel like I’m on the meds regimen of a 90-year-old.

Anyways —

I’ll keep this post short and plan to blog after my appointment with the orthopedic surgeon.

They plan to do an MRI or CT scan or X-ray — or whatever it is they do — when I go in.

I joke because my specialist has now referred me to a specialist. sigh.


The knot has caused my left hand to swell and it feels as if it’s pushing against a nerve that’s shooting pain all the way up my left arm. At times, the area directly above it and underneath my thumb is blue as if it isn’t getting good circulation.

My appointment with the hand surgeon is next Friday.

Next Tuesday I have an appointment with my sister’s doctor who takes a holistic approach. I plan to talk to him about my wrist, but a slew of other symptoms I’m dealing with too. I’ve been waiting for months to get in.

To top it off, I’m fighting off a bug today. Really sore throat, migraines and now feeling feverish. I may be headed to the doc even sooner than next week. Hoping my immune system can somehow fight this off without making me flare too bad.

Until next time friends,



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A quick rant about Shingles and some photos

Shingles suck!

Yup! Here I am months later and still dealing with shingles pain. Today it has been bad. Not sure why today specifically, but it’s been pretty significant. Just ready for it to stop!!!

Here’s some photos I took!







Also. Here’s a song for your ears.

Posted in Autoimmune Disorders, Healing, Health, Literature, my artness, My photography, nature photography, Uncategorized | Tagged , , , , , , , | 1 Comment

That which is essential, is invisible to the eyes

“L’essentiel est invisible pour les yeux.” ~  Antoine de Saint-Exupéry


The little Prince is by far one of my favorite literary works. And I have read a lot of literature being that my minor is Comparative Literature.

The quote above roughly translates to “One sees clearly only with the heart,” or an even closer translation reads “What is essential, is invisible to the eyes.”

I think what draws me to the book is its simplicity combined with its deepness.

That’s why when I read the article “46 Things I Learned Making Mr. Rogers and Me” I wasn’t surprised when I learned that Mr. Rogers had the quote framed and hanging in his office. I grew up watching Mister Rogers’ Neighborhood, finding comfort in his calming voice and consistency.

I was also a huge fan of Daniel Striped Tiger and the trolley car. Not so much King Friday, although I’m not sure why.

And was just downright scared of Lady Elaine Fairchilde, who reminded me of a mix between my grandmother (from my mom’s side) and a scary school teacher.


Today is the 10th anniversary of Mr. Rogers death and the world has been a little less easy to bear without him.

There was just something comforting as a child to sit cross-legged on the green shaggy carpet of my “den” and eat a peanut butter and jelly sandwich while watching a TV that looked eerily similar to this one:


When things were hectic around me (yes, even as a child things could be stressful — in case you forgot), Mister Rogers’ Neighborhood seemed to make the rest of the world disappear around me. It felt as if he was looking straight through the camera and into my eyes and telling me that everything was going to be alright.

I was saddened by his death 10 years ago and today, I am saddened by its anniversary.

Fred McFeely Rogers had a knack for relating to people — and more importantly, children.


I have this peculiar feeling that I will one day see Mr. Rogers again, only not this side of heaven.

Thank you Mr. Rogers, for spending your life recognizing those things which are essential.


Image Source: Getty Images

Until next time friends,


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I have the autoimmune disease that killed Harold Ramis

“… you said before you were waiting for a sign. What sign are you waiting for?” ~Dr. Egon Spengler


Harold Ramis died yesterday of complications from Vasculitis at just 69-years-old.

I also have vasculitis. 

It’s been a minute since I’ve dealt with a flare, but this all too well puts things into perspective (once again) for me. I’m amazed still that I survived my bout with anaphylaxis several years back. My vasculitis was soo intense that the backs of my legs literally looked like a road map for about three weeks following the incident.

For those who don’t know, I nearly died Thanksgiving of 2010 after handling wheat. I had never had an allergic reaction before. Long story short, I was already diagnosed with Celiac Disease, so hadn’t eaten wheat in years. I didn’t realize that helping my mom prepare cornbread dressing that year would put me in the hospital, twice, with anaphylaxis. I barely made it down the stairs to get help Thanksgiving morning, stopping about three times to try and catch my breath and gather strength. It was awful. Despite taking several Benadry, my lips and face continued to swell and my limbs and lungs were ON FIRE with hives. (Not only had I handled it for about an hour, but also breathed it in.)

Skip forward a week later and although the swelling is down, my body is covered in hives, I still can’t breath well and my veins are bleeding out, causing my legs to look as if there’s a purple-laden road map covering the back of them.

My diagnosis (well, one of them) — Autoimmune Inflammatory Vasculitis. 

It’s what what recently killed “Ghostbusters” actor Harold Ramis, a mere four years following his diagnosis.

Am I scared you ask … NO!

People come and go everyday. Some from health issues, others tragic accidents and others still are mercilessly murdered.

Only God himself knows the number of our days. I find comfort in that.

I choose to live above my illnesses. Define them (literally on this Blog) rather than allowing them to define me. Autoimmune issues are no different than issues that every other person on earth has faced since the fall of Adam! Whether that be Cancer, obesity, arthritis — or mental issues like ADHD, Depression or Bipolar disease.


Harold Ramis didn’t allow his disease to come between himself and his dreams. Even following his diagnosis he went on to write the screenplay to “Year One,” “The Real Ghostbusters (short)” and the “Ghostbusters: Sanctum of Slime” video game.

In 2012 he produced the documentary  Joffrey: Mavericks of American Dance.

From 2006-2010 (in the midst of his diagnosis) he directed four episodes of one of my favorite shows “The Office.”


And I’m not even pretending I’m going to list how many self-credited documentaries he participated in — or what side projects he may have been in the midst of.

My point …

Don’t stop living just because you have an illness. 

Yes, you might have to slow down a while or alter your hours or sometimes say no.

But make the decision TODAY to get out there and be the person you want to be. Our time here is short.

Like Dr. Egon Spengler — be the person that comes to others’ minds when they need to call on someone.


RIP Harold Ramis


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Hearts of darkness are in fact, hollow men


The Hollow Men

Mistah Kurtz-he dead
            A penny for the Old Guy


    We are the hollow men
    We are the stuffed men
    Leaning together
    Headpiece filled with straw. Alas!
    Our dried voices, when
    We whisper together
    Are quiet and meaningless
    As wind in dry grass
    Or rats’ feet over broken glass
    In our dry cellar
    Shape without form, shade without colour,
    Paralysed force, gesture without motion;
    Those who have crossed
    With direct eyes, to death’s other Kingdom
    Remember us-if at all-not as lost
    Violent souls, but only
    As the hollow men
    The stuffed men.


    Eyes I dare not meet in dreams
    In death’s dream kingdom
    These do not appear:
    There, the eyes are
    Sunlight on a broken column
    There, is a tree swinging
    And voices are
    In the wind’s singing
    More distant and more solemn
    Than a fading star.
    Let me be no nearer
    In death’s dream kingdom
    Let me also wear
    Such deliberate disguises
    Rat’s coat, crowskin, crossed staves
    In a field
    Behaving as the wind behaves
    No nearer-
    Not that final meeting
    In the twilight kingdom


    This is the dead land
    This is cactus land
    Here the stone images
    Are raised, here they receive
    The supplication of a dead man’s hand
    Under the twinkle of a fading star.
    Is it like this
    In death’s other kingdom
    Waking alone
    At the hour when we are
    Trembling with tenderness
    Lips that would kiss
    Form prayers to broken stone.


    The eyes are not here
    There are no eyes here
    In this valley of dying stars
    In this hollow valley
    This broken jaw of our lost kingdoms
    In this last of meeting places
    We grope together
    And avoid speech
    Gathered on this beach of the tumid river
    Sightless, unless
    The eyes reappear
    As the perpetual star
    Multifoliate rose
    Of death’s twilight kingdom
    The hope only
    Of empty men.


    Here we go round the prickly pear
    Prickly pear prickly pear
    Here we go round the prickly pear
    At five o’clock in the morning.

    Between the idea
    And the reality
    Between the motion
    And the act
    Falls the Shadow
                                   For Thine is the Kingdom
    Between the conception
    And the creation
    Between the emotion
    And the response
    Falls the Shadow
                                   Life is very long
    Between the desire
    And the spasm
    Between the potency
    And the existence
    Between the essence
    And the descent
    Falls the Shadow
                                   For Thine is the Kingdom
    For Thine is
    Life is
    For Thine is the
    This is the way the world ends
    This is the way the world ends
    This is the way the world ends
    Not with a bang but a whimper.

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HealClick more like Facebook for people with chronic illness

A new website recently launched that caters to people who suffer from chronic illnesses, so I thought I would give it a shot. I mean, why not. If anyone suffers from a chronic illness — I DO!

Turns out, after thumbing through several pages at the website, HealClick is way cooler than I expected.

Think of it more as an online community if you will. A Facebook or maybe a for people with chronic illnesses.

The site allows you to create an online profile where instead of focusing on your interests or “likes” (although it does allow you to include them), it concentrates on your illnesses, diagnosis’ and symptoms and then through a process similar to Match, will allow you to see whether another member is a “low,” “OK” or “high” match to you based on your illness.

This allows people to connect based on their illness, opening the door to a wide range of possibilities. Not only can you relate and vent with others who may deal with similar symptoms, but you can share information such as doctors, articles, medications that work for you and even symptoms that may lead someone without a diagnosis to get the proper testing.

It has only recently launched and I am still navigating the site, but if you, like me suffer from a chronic illness — why not give it a try.

And come find my profile.

Of course, my name on there is Autoimmune Allie. 😉

Hope to see you over there.

Until next time friends,



PS: Here’s some more general information about the site:

Sign up at <>
Help start a patient revolution at

See answers to 5 frequently asked questions at the HealClick Blog:

  • HealClick is completely free and will always be.
  • We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn’t find what they were looking for they decided to just make it themselves.
  • Our site is for patients only. We don’t recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn’t.
  • Matching is what sets us apart. Our site tells gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments.
  • Start any kind of topic. If you have a question or an experience to share, we want to hear it.
  • Review any type of treatment.  Tell us about your experience, and compare your results with others.
  • Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks.  
  • The medical information that our members provide won’t go to waste; it will be used to fuel new research! We will share the anonymized data with researchers that we believe have patients best interests in mind. More information on how we de-identify data here:
  • Privacy is incredibly important to us. Not just with regards to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public.

Posted in Autoimmune Disorders, Healing, Health, Lupus, MCTD, Psoriatic Arthritis, RA, Uncategorized | Tagged , , , , , , , | 2 Comments

Real love is letting go

I’ve had a lot on my plate lately.

Who am I kidding … I always seem to have a lot on my plate. Life never seems to want to slow down and I often wonder if I find ways to keep myself running so as not to slow down.

Not sure what I’m scared of. Being alone, rejection, judgment.

I have learned that in this life, nothing is constant (except God). Nothing is certain (except God).

Humanity WILL fail you.

The only way to love it seems, is letting go.

Letting go of pain

Letting go of judgment

Letting go of loneliness

Letting go of fear

Letting go of regret

Letting go of memories

Letting go of control

Letting go of rejection

Letting go of mistakes

Letting go of resentment

Letting go of bitterness

Letting go of people

Real love, it seems … IS LETTING GO

Until next time friends,




3734“I’m letting go, are you letting go?”

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“No man for any…

“No man for any considerable period can wear one face to himself and another to the multitude, without finally getting bewildered as to which may be the truth.” ~Nathaniel Hawthorne

Not only knowing who you are is important, but also always staying true to it. The moment you become what someone else thinks you should be or hide the real you underneath a facade to fit in or appease someone else — is the moment you lose yourself.

On the other hand …

If someone is acting one way, but is truly someone different than they say — in time, the truth will prevail. Take things slow and always seek truth.

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I’m not purple anymore.

I’ve turned to shades of blue.


What it means

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