Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like To Watch The Games In PyeongChang

Recently, Bustle Magazine asked me to write a follow-up article to 10 Ways Living With a Chronic Illness is Like Training for the Olympics that was published on The Mighty for the 2016 Summer Olympics. The new article, Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like to Watch the Olympic Games in PyeongChang, went live on the Bustle website today. Check it out and let me know what you think.

Viper Venom Blood Testing

I’ve had a few people ask me about this test today after I posted about it in my list of blood tests that I’ve had in the last year, so I figured I’d share some more information about it.

For starters,  the test is officially known as the Dilute Russell’s Viper Venom Time (DRVVT). While it’s not a rare test per say, it’s not generally  ordered as a part of routine blood work . Typically, a doctor will order this if they are looking for specific markers relating to certain blood clotting disorders, such as those in Antiphospholipid Syndrome (APS). Still, when I called for my test results the nurse who read my result had never even heard of this test and had no idea what the result meant – other than it was flagged as being abnormal (more about that later). Nevertheless, the test itself is really interesting (and slightly confusing as well).

Although my test was done in the laboratory, this video will give you a good demonstration of how and why viper venom is used to test the coagulation times of human blood.

*Trigger Warning*

If you have a phobia of snakes – DO NOT watch the following video

Pretty amazing, huh?

Also kind of scary to think about what happens to the body when an individual is bitten by such a venomous snake. Luckily, though, that wasn’t the case here.

About the Test:

According to the Practical Haemostasis Website, the “Russell’s viper venom [RVV] isolated from the snake Daboia russelii [orrussellii – contains a potent activator of factor X which in the presence of phospholipid [PL], prothrombin and calcium ions clots fibrinogen to fibrin. In individuals with a lupus anticoagulant [LA] the antibody binds to the phospholipid inhibiting the action of the RVV and prolonging the clotting time.
As the RVV directly activates factor X, the test is unaffected by deficiencies of factors XII, XI, IX or VIII. The DRVVT is frequently combined with a platelet neutralisation procedure to demonstrate the phospholipid specificity of the antibody” (para. 1).

One thing to note here is that the Lupus anticoagulant does NOT test for lupus  – although the test may be positive for some individuals if they have both Lupus AND APS. It’s merely an immunoglobulin that is associated with an increased clotting time.

How It’s Used:

From The American Association for Clinical Chemistry

Lupus anticoagulant testing is a series of tests used to detect lupus anticoagulant (LA) in the blood. LA is an autoantibodyassociated with excess blood clot formation. LA testing may be used to help determine the cause of:

  • An unexplained blood clot (thrombosis) in a vein or artery
  • Recurrent miscarriages
  • An unexplained prolonged PTT test (PTT measures the time it takes in seconds for a person’s blood sample to clot in a test tube after reagents are added.) LA testing helps determine whether a prolonged PTT is due to a specific inhibitor, such as an antibody against a specific coagulation factor, or to a nonspecific inhibitor like the lupus anticoagulant.

LA testing may also be used:

  • Along with tests for cardiolipin antibody and anti-beta2-glycoprotein I to diagnose antiphospholipid syndrome (APS)
  • Along with tests such as factor V Leiden or proteins C and S to help diagnose an excessive clotting disorder (thrombophilia)
  • To determine whether the lupus anticoagulant is temporary (transient) or persistent

LA cannot be measured directly and there is no single test or standardized procedure to detect the presence of LA in the blood. A series of tests is used to confirm or rule out the autoantibody:

  • It is recommended that two tests be used to detect lupus anticoagulant. The most sensitive tests are dilute Russell viper venom test (DRVVT) and a LA-sensitive PTT (PTT-LA), one that uses low levels of phospholipid reagents. Follow-up testing is performed to confirm or exclude the presence of lupus anticoagulant. These may include:

  • Mixing study: an equal volume of patient plasma is mixed with “normal” pooled plasma and a PTT or DRVVT is performed on this mixture.

  • Correction/neutralization: an excess of phospholipids is added to the patient sample and a PTT-LA or DRVVT is performed. (When PTT-LA is measured, the assay is called a hexagonal phase phospholipid neutralization assay).

The Laboratory Method:

From Practical Haemostasis

Pooled normal plasma is mixed with diluted PL at 37°C. Diluted RVV and then calcium chloride are added and the clotting time is measured. The test is then repeated using patient plasma and the ratio of test:normal plasma is calculated.

Reagent Explanation
Platelet poor Plasma A source of coagulation factors, particularly thrombin and fibrinogen.
Dilute Russell’s Viper venom Typically this is diluted to give a clotting time in normal plasma of between 30-35s as this optimises sensitivity to antiphospholipid antibodies.
Phospholipid To provide a surface for thrombin generation. This should be diluted to a sufficient degree that it becomes the rate limiting step and any inhibition by a LA prolongs coagulation.
Calcium To initiate coagulation

My Test Results:

DVRTT

Although my test results were out of the normal limits, it is not considered a positive test because my result would need to be higher than normal range (slower clotting time) and mine was below the average (faster than the normal clotting time).  Make sense? No idea if a low score has any clinical significance – haven’t found anything that even mentions it.

Below are some explanations about the meaning of the results and how to determine a positive test.


Result Interpretation:

From The American Association for Clinical Chemistry

The results of the series of LA tests either lead toward or away from the likelihood of having LA. The laboratory report may be somewhat complicated, but it usually provides an interpretation of the results and states whether LA is present or absent. LA testing results, like those of other tests for clotting disorders, are difficult to interpret and are best evaluated by physicians with experience with excessive clotting disorders.

Although the initial tests performed for LA may vary, they usually begin with a PTT that is prolonged. A PTT that is normal (not prolonged) may mean that there is no LA present. However, the test may not be sensitive enough to detect LA and the LA-sensitive PTT (PTT-LA) may need to be done.

Additional details on LA testing results

Lupus anticoagulant testing is often done in conjunction with tests for cardiolipin antibody and anti-beta2-glycoprotein I antibodies to help diagnose antiphospholipid syndrome. The results are interpreted together, along with clinical criteria, in order to make a diagnosis.

Results of other tests that may be performed to help rule out other causes of a prolonged PTT include:

  • If a thrombin time test is normal, then heparin contamination is excluded as a cause of prolonged PTT.
  • If a fibrinogen test is normal, then it is likely that there is sufficient fibrinogen for clot formation.

Other tests that may be done to help confirm the diagnosis of a lupus anticoagulant include:

  • Coagulation factor assays – these may be ordered to rule out factor deficiencies that may cause a prolonged PTT and bleeding episodes; a panel of factor assays may also help in detecting lupus anticoagulant.
  • Complete blood count (CBC) – the CBC test includes a platelet count; mild to moderate thrombocytopenia (low platelet count) is often seen along with the lupus anticoagulant; moderate to severe thrombocytopenia may develop in patients receiving anticoagulant (heparin) therapy for lupus anticoagulant-associated thrombosis.
  • Tissue thromboplastin inhibition test (rarely performed nowadays)

Clinical Explanation:

From Practical Haemostasis

If the DRVVT is not prolonged then the correction test (sometimes referred to as the neutralisation test) is not indicated.

DRVVT Interpretation
DRVVT
Ratio [Test DRVVT/control DRVVT]
Reference Range: 29-42s
Reference Ratio: 0.9-1.05
Ratio [Test DRVVT/control DRVVT] >1.05 Possible LA
Exclude deficiencies of factors II, V, X, fibrinogen or another non-LA inhibitor
Prolonged DRVVT which corrects with normal plasma Clotting factor deficiency
[A weak LA can sometimes be masked in a 1:1 mix with normal plasma and some labs recommend a 1:4 mix [Normal plasma:Test plasma] to try and minimise this]
Prolonged DRVVT which corrects with PL Lupus anticoagulant

Calculating the percentage correction:

1. The percentage correction is calculated using the formula below where ‘+ PL’ is the DRVVT with additional phospholipid i.e. the neutralisation step.

2. The percentage correction of the ratio is calculated using the formula below where again ‘+ PL’ is the DRVVT with additional phospholipid. The final result is multiplied by 100 to convert it into a percentage:

This latter calculation is that currently recommended by the British Committee for Standardisation in Haematology [BCSH.]

In the following example:

Sample dRVVT Clotting Time [s] Ratios
Patient Plasma 69.2 s [Patient Plasma]/[Reference Plasma] = 1.82
Reference Control [Normal] Plasma 37.9 s
Patient Plasma + Phospholipid 39.5 s [Patient Plasma + Phospholipid]/Reference Control [Normal] Plasma +  Phospholipid] = 1.21
Reference Control [Normal] Plasma +  Phospholipid 32.5 s

From the data above: [1.82 – 1.21/1.82] x 100 = 33.5% correction. So in a patient in whom the dRVVT is prolonged as in this case [69.2s] the 33.5% correction is consistent with the presence of a lupus anticoagulant.

3. What constitutes a positive correction ratio? Most laboratories regard a correction of >10% with PL as being a positive test.

In individuals in whom a LA is identified, the test should be repeated in 12 weeks. It should also be remembered that not all tests including the DRVVT will identify all LAs and therefore, if the index of suspicion that a specific patient has a LA then other tests should be undertaken e.g. Silica Clotting Time [SCT]. Finally – the causes of a LA should be screened for e.g. ANA, drugs, viruses etc.


References: 

American Association for Clinical Chemistry (2014). Lupus Anticoagulant Testing. Retrieved from https://labtestsonline.org/understanding/analytes/lupus-anticoagulant/tab/test/

Practical Haemostasis  (2016). Dilute Russell’s Viper Venom Time [DRVVT]. Retrieved on June 6, 2016, from http://www.practical-haemostasis.com/Thrombophilia%20Tests/APS/drvvt.html

Sports One Media (2012, July 12). Viper Venonom Turns Blood Into Jelly [Video File]. Retrieved from https://www.youtube.com/watch?v=PwT8vDzjCSQ&list=PLXGuqM-FQFlipPDC8hcLvG7CQ2F8divMo&oref=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DPwT8vDzjCSQ%26list%3DPLXGuqM-FQFlipPDC8hcLvG7CQ2F8divMo&has_verified=1

Welcome to the new age, to the new age…

The anticipation had been killing me, but I finally received the call that I had been eagerly waiting for from the vascular surgeon. I was in my therapist’s office when the call came in, but luckily she was kind enough to let me take it since she knew it was something I had long been waiting for. I think she was curious herself. Needless to say, it was probably a good thing I was in her office when the call came in, as I was not a happy camper.


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He started by saying he looked at my CT Angiography results and he had spent some time doing research, as well as talking to fellow vascular surgeons. 

Good.  I figured he had some research to do, considering the result. 

He goes on to say my renal vein definitely shows a large amount of compression.

Okay, go on.

He asks how I’ve felt lately.

“Terrible.”

“Remind me of your symptoms again?”

*sigh*

“Well, I have had horrendous stomach pain every day.

I’m nauseous constantly.  

I can’t eat anything without being sick. I don’t digest my food.

I have diarrhea and/or constipation that is limiting.

I am tired all the time. And not just tired, EXHAUSTED.

Dizzy, heart palpitations, spinning, and chest pain.

My limbs go numb. I have arthritis. My legs are stiff and painful.

I have livedo reticularis. 

I have painful rashes. They are getting worse and change day-to-day.

My hands are now so blistered I can barely hold on to anything…”

He says, “well none of those explain Nutcracker Syndrome…”

“Right. I haven’t had hematuria in years. Just the back pain and left, flank pain. Abnormal, unexplained bleeding. But all my abdominal pain is on my left side…

“So yeah, nothing relating to the Nutcracker Syndrome. Like I said before, I don’t believe in it.”

“What about the Superior Mesenteric Artery Syndrome? Or the May-Thurner? Both were noted in the results.

“I saw it, but I don’t believe they are the cause of your symptoms” he says.

“Well, SMAS can cause severe abdominal pain, nausea, anorexia, vomiting…”

” No vascular compressions typically causes any symptoms at all. None of us (vascular surgeons) believe that these ‘syndromes’ exist.”

“Oh…”

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“Besides, on the small chance that these conditions even exist, they are so rare. It’s not possible for you to have all three. “

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So the report it wrong? Because it says I have all three.

I felt my face getting really red. I didn’t know whether to cry or scream.

“I think whatever you have is systemic.”

“But it’s not showing in my blood work. If it was systemic, you’d think my blood work would show it…”

(I think this to myself, but I can’t say it out loud. I’m too frustrated and  taken off guard to even say almost anything at all)

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“Like I told you during the consult, I want to take a very ‘conservative approach’ to this. I don’t suspect the Nutcracker syndrome is causing your illness. I suggest you continue looking for the cause of your illness elsewhere. After you have exhausted everything else possible, then come back and I’ll re-examine you again. If at that time, you don’t have a diagnosis despite exhausting all other options, then we can go ahead and try to balloon the vein and see if there is any relief.”

“Okay. Thanks for calling.” I hang up.

I’m positive that there was no hiding the disappointment and  sadness in my voice during that call.

I don’t care though. Maybe it’s something he should hear. Not that he cares.

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I am beside myself at this point. I can barely breathe, my chest is tight, and I have no idea what to do.

So let me get this straight…

All these world-renowned doctor’s, who have researched these disorders extensively, don’t know what they are talking about?

The Mayo Clinic, The Cleveland Clinic, and The NIH know less than you, is that correct?

All the patients in my support groups are just lying about their symptoms?

Everyone in the Nutcracker Syndrome Group?

The Superior Mesenteric Artery Syndrome Group? The Wilkie’s Group? SMAS Support?

The May-Thurner Syndrome Group as well?

Not to mention these patient’s doctors (world-wide) who not only diagnosed them with these “imaginary” syndromes but also are treating them for it too. Are they lying?

The invasive surgeries that these patients have undergone, their feeding tubes that have saved their lives, their medications… Is it all for nothing?

All of those people with these ‘non-existent’ disorders, particularly SMAS, that have lost their lives to these conditions… must have never existed either, right? 

What a crock of sh*t!

{Excuse my language.}

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I debate on sending him all the research and case studies I have found.

There’s so many, but it probably wouldn’t matter anyways.

GARD Superior Mesenteric Artery Syndrome

Superior Mesenteric Artery (Wilkie’s) Syndrome as a Result of Cardiac Cachexia

Wilkie’s Syndrome

Wilkie’s syndrome causing persistent vomiting

Patient with Both Wilkie syndrome and nutcracker syndrome

Nutcracker Phenomenon and Nutcracker Syndrome

Case Report: Nutcracker syndrome: A rare anatomic variant

Current trends in the diagnosis and management of Renal Nutcracker Syndrome: A review

May-Thurner Syndrome

The list goes on and on…

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I feel panic inside. Now, what do I do? Where do I go from here?

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I tell my therapist what was said. Of course she thinks this is crazy. At least it’s not just me. She has looked into every condition and every medication the doctors have mentioned or I’ve found in my research. This is why I like her so much and why I continue to keep going. She tries to understand me. She respects my opinions. At least there’s someone.

I see her look down at my hands and legs. My hands are red, swollen, peeling, and visibly painful. My legs clearly look bruised in spots, with purplish-molted discoloration.  

She asks me, “what’s next?”

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I have composed myself by this point. No point in breaking down, anyway. There’s nothing I can do to change this doctor’s mind. Plus,  I’m used to being disappointed by doctors. He’s not the first one to not believe me, or give up on me. Sadly, he probably won’t be last either. 

“I find another vascular surgeon. Get a second opinion. I start over… again.”

“How do you feel about that?”

“I’m just tired of it, really. I feel nothing anymore. You get so close, then hit a wall. Over and over again.”

“That’s frustrating. It shouldn’t be that way”

“No, it shouldn’t. It’s unfair and it sucks, but that’s the reality of it. This is how it is to be chronically sick. Normal people don’t see this side of healthcare in their yearly check-ups or their infrequent appointments for a cold or flu. But we (those with chronic illness) deal with it every day.  Every day is a fight to get the proper care. These doctor’s don’t care. Health care in the United States was not meant for us (chronically ill). Yet, we keep fighting, who know’s how. Probably because there is no other choice. What else can you do?”

I lean further back in my chair. I’m not hiding my frustration or disappointment well. I know she understands, or at least can acknowledge,  how I feel. This alone makes me feel better. Well, at least better enough not to scream or cry, which was my initial reaction to the news. Even though I have had plenty of time to process what was said by now, I’m still in a bit of shock.

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As per usual, today was spent picking up all the pieces.

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I called multiple vascular surgeons all over the entire state and I found a few actually in town that accepted my insurance. Although I know an in-state doctor more than likely won’t have a great deal of expertise on any of my conditions, it’s the only option I have currently. I’d prefer to see one of the very few doctors (all in the highly accredited and well-known clinics across the country) that specialize in these disorders, but my insurance won’t pay out of state and it’s just not feasible for me financially. At least not at this time, maybe ever.  

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I made sure to ask them if they had surgeons who were familiar with ‘rare vascular compression disorders’. Of course, a lot of explaining of the conditions ensued and I had to be placed on hold multiple times while they asked the doctors, but I found two potential offices that may be able to at least give me a second opinion. They need another referral, however, which wouldn’t be an issue if my primary care office would actually answer their phone so that I could schedule an appointment with my doctor. But alas, both yesterday and today I got the infamous voice mailbox that literally goes nowhere. (There’s no actually recording, just a beep to leave a message. And every time I do leave a message, I NEVER get a call back) I guess I’ll try back on Monday.

Thankfully, Monday is the start of a new week.

It’s a good day to start from the beginning, once again.

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Just stand still, look pretty.

But you don’t look sick…

My illness is only invisible because I decide what you can and can’t see.

Much of living with chronic illness is hidden from the outside world,

in an attempt to be as normal as physically possible.

So unless you live it yourself, you’re blind to it.

But nothing is truly invisible if you make a conscious choice to really open your eyes.

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So what does invisible illness really look like then?

Allow me to show it you.


You can see invisible illness in the things I do each and every day.

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Visible in the adjustments I make just to do everyday things.

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You can see it on the pages of my planner in which I write every appointment and daily to-do list.

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Or in my notebook that I take everywhere with me.

Otherwise, I will forget everything.

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Or the time I spend doing medical research,

hoping to find an answer for what the doctors can not find.

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You see it in the amount of caffeine I drink, just to stay awake.

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In how long it takes me to do the housework and laundry.

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Or how hard it is just to run simple errands.

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You can see it sitting on my bookshelf.

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In number of times I wash my hands in a day.

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Or the fact that a good portion of my time is spent hidden away in a bathroom.

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Illness doesn’t leave room for hobbies, much less the things that are fun.

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Invisible illness is seen in the never-ending doctor’s appointments and medical testing.

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Or the procedures I’ve had, despite knowing whether they will work or not.

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You see it in all the blood draws the doctors run regularly, trying to get a diagnosis.

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And the therapy appointments I attend just make sure I am not crazy.

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You see invisible illness in all the paperwork I have to complete and keep track of.

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In the two three inch binders that hold my medical records

which I need to bring to every doctor’s appointment.

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-one for clinic notes, one for labs/testing-

You see it in the summaries I put together to keep all my doctors on the same page.

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Or in the advanced directives, living wills, and Do Not Resuscitate orders.

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My illness is clearly visible in the medications I take  every day.

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You can see it in my oxygen concentrator and tank that help me to breath.

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In the duo-nebulizer that I keep at home

just in case an attack comes on and I can’t get to the clinic in time.

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 In my monitoring tools -in my blood pressure cuff and oximeter.

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In my heating pad and humidifier.

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My invisible illness is hidden deep inside my travel case,

full of emergency medications and supplies for when I leave the house.

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And in the lessons my husband has had to take to administer medication

or help me in case I can’t help myself.

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You see my invisible illness in the symptoms I try to conceal and hide.

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Just because it’s not easy to see, doesn’t mean it’s not there.

Do I look sick enough now?

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Because this is how I look at home, behind closed doors.

In real life, invisible illness is not so invisible afterall.

Remember that the next time you judge someone,

when you don’t believe they are as sick as they make out to be,

when you make them prove how sick they truly are,

or say “but you don’t look sick…”

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Keep Your Head Up, The Colors Are Beautiful

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Lot’s of new things on the horizon, so I figured I’d give a short update.

  • On UndiagnosedWarrior: Been updating and organizing pages, adding new information, noting some tips and tricks, and other things here and there. Take a look around and let me know what you think. I have some good ideas and really want to add more content for those looking for a diagnosis, as well as those who have already been diagnosed. And, of course, keeping you updated on my search for a diagnosis. 
  • On Life: I’m officially back out of work, but this time my short term disability has been approved. After the whole mess with getting a Lupus diagnosis, then having it taken away, then given back by a different doctor, I’m still confused as to whether or not I ACTUALLY have it.  I have a few tests pending and some recent tests that have come back with very interesting results (*Hint: It was enough to finally PROVE my disability claim). I’m waiting for the doctors to call to discuss their thoughts, so I don’t want to jump the gun on yet another diagnosis, so I’m going to wait to post, but I’ll update as soon as I can.

As for now,

I just want to leave you with the strength in knowing

 that all your struggles, all your hard work, and your persistence to keep looking 

IS WORTH IT!

I know it is hard to stay patient and that you are tired of waiting,

especially when  you have been sick for so long.

But waiting is always the hardest part. 

Keep trusting your instincts. 

Trust the journey.

You know your body better than anyone.

The answers lie WITHIN YOU.

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“Keep your head up
The colors are beautiful
When they say give up
Turn up your radio
All the sentimental memories you own
When they say grow up
It’s just like a funeral
Keep your head up
The colors are beautiful
Keep your head up
It’s all right in front of you
When they say wake up
You’re breaking ridicule
When all the sentimental memories you own
Keep you trapped inside your room there all alone

And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

On your own

Keep your head up
The colors are beautiful
And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

Watch this fade away
Everything fades away
Keep your head up
The colors are beautiful”

(“Head Up” by Sugarcult)