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Art Therapy

So, I do art projects when I can, as a way to express myself, since I am home bound for most of the time. Recently I was offered a special discount to try a new Stress Relief Coloring Book. 

It’s available on Amazon:

http://www.amazon.com/gp/product/B01I1QLIDC

There were some beautiful relaxing nature images. I’m enjoying it so far, and plan on taking it to treatment with me, to make the time pass faster. It’s a really good deal for the price. Here’s a few of my favorites:







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When Apologies are Not Enough

I try to stay as positive as possible. With that said, positivity is something I have to actively strive for everyday. It does not come easy, or cheap when you’re fighting chronic illness, and on chemotherapy for life. I wake up in pain every morning, and go to bed in pain every night. There is not a day that passes pain free. With my luck, my chronic autoimmune disorder is rare, has no known cure, is difficult to treat, is linked to my vascular system (so it can go wreak havoc anywhere in my body), and is heavily exacerbated stress.

Welcome to Behçet’s Disease. It’s quite a lonely party, as there are only about 16 to 20 thousand cases in the US, and only one specific treatment center that most of us could never afford to visit. Milder cases, as I was when first diagnosed, can often be treated with just immune suppression. However, if patients are not able to “clear the deck,” and eliminate excessive stress in life, the disease becomes much more aggressive.

Symptoms of Behçet’s include oral, skin, and genital ulcers that often cause severe scarring, and can take months to heal. It can cause eye lesions (Anterior/Posterior Uveitis, and Iritis) that can lead to total blindness. Behçet’s also comes with all, or many of the same symptoms as RA (Rheumatoid Arthritis), Crohn’s Disease, MS (Multiple Sclerosis), and Lupus. Such mimicry can mean years of observation to reach the correct diagnosis, or have any success at treatment.

The average age of death for patients with Behçet’s Disease is 34.8 +/- 11.9 years old (Saadoun, et. al, 2010). I am 36 right now, so I have a maximum life expectancy of about 46.7 years old. That’s a tough pill to swallow when you’ve just finally got life together, and have fallen in love with Mr. Right. To say I didn’t plan for this is an extreme understatement.


So here is the question: given those facts, how do you forgive someone who had saw how sick you were, witnessed your death-like state on Methotrexate, and still took advantage of you? Not just a little bit, but did something they knew (and had said themselves) would destroy your family. Something so stressful, that pushed your body past so many limits that your stress triggered illness morphed into a horrific nightmare requiring increasing doses of chemotherapy, and immune suppression.

And what do you do when that person is a family member who refuses to admit the situation had impact, or that they were in any way responsible? I’m still clueless on that one, but I’ve got about ten years left to figure it out. (Far, far less time on this Earth than the one who turned my family upside down.)

Can anyone relate, or do you have helpful advice? Please leave your feedback in the comments section, below.

References

Saadoun, D., Wechsler, B., Desseaux, K., Le Thi Huong, D., Amoura, Z., Resche-Rigon, M., Cacoub, P. (2010). Mortality in Behçets Disease. Arthritis & Rheumatology, 62(9):2806-12. doi: 10.1002/art.27568.

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Getting “Regular” Sick While Chronically Ill

I have been battling Flu Type A (even though I got my vaccine months ago), and subsequent bronchitis for the last few weeks, all while having a flare up of my autoimmune disease. Normally, I  would have had my Remicade infusion last week, and be recovering now, but since Remicade (infliximab) is used to  suppress my immune system, on top of the Imuran (azathioprine) I take daily, I had to wait (doctor’s orders) until I was recovered. 

Not having my chemotherapy infusion on time means I am typing this slowly, and painfully with one, swollen, puffy jointed index finger. My face, and skin have open ulcers, every joint in my body is painfully inflamed, I’ve got brain fog (thankful for the update button every time my mind is chasing rabbits), and my GI system is in one of the lower levels of hell. It’s only “just begun,” so I am really glad (Sick, huh?) that my infusion is today. In fact, I really wish it was this morning, it will be about 6 hours before my IV drip starts, or even later, as the pharmacy gets backed up in the afternoon, and my IV bag can’t be mixed (@ 40K +/- per dose) until I am checked in (as it is made based upon mg, per kg of body weight, which fluctuates).

I really feel like those of us who suffer from a chronic illness should get a free pass when it comes to regular illnesses! Trust me, after the last few weeks, I know that’s impossible, no matter how many hospital protocols my family follows. It just seems remarkably unfair. 

Does anyone who has a chronic illness get where I am coming from? 

Have you battled common illnesses while on immune suppression? What helped? 

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Limbo

Everyone I know who is chronically ill can remember the time when they knew that something was wrong, but could not put a name to it, or get effective treatment. It can be like living in limbo. 

lim•bo (noun) is “an uncertain period of awaiting a decision or resolution;” or “an intermediate state or condition.”


(http://www.google.com)

That is where I’ve been since October of 2013. It started with a loud whooshing in my ears when I got up, bent over, moved my head to fast, or squatted. One day I was squatted down cleaning the lower portion of the window when the whoosh, whoosh started in my ears, and then my vision went dark.

I stood up, touching the window for some frame of reference, and within 15-20 sec. it had passed. Then it started to happen more frequently. I turned my head to look for the remote control one night weeks later, and lost sight for almost a minute. I needed answers!

I scheduled a visit with my primary care office as soon as possible. When I went in and described what I was experiencing, a doctor first thought that it was due to my low blood pressure. They did a test where they took my blood pressure standing up, then after sitting, then after lying down. I was diagnosed first with a blood pressure condition called orthostatic hypotension

Basically, the thought was that my blood pressure was dropping when sitting up from lying down, and after standing up. I was urged to increase my salt intake, and drink plenty of water. I followed orders, but my vision kept blacking out in longer, and longer chunks of time. It came with dizziness, disorientation, loud whooshing in my ears, and sharp pain in my neck, and right shoulder blade. As if someone was trying to pry my shoulder blade off with a crowbar. 

My doctor was stumped, and referred me to the Duke Eye Center in February, but they could not fit me in with any neuro opthalmologist until May. My partner, a medical illustrator, happened to have a client who specialized in eye disorders. After an email to the neuro-op describing my symptoms, I was immediately added to schedule (even though there was no opening) the next week. My new doctor knew immediately what was wrong, and diagnosed papilledema in both my eyes.

Papilledema is one of the hallmarks of a little heard of condition called IH, IIH, intracranial hypertension, or pseudo tumor cerebri. This condition occurs when cerebrospinal fluid fails to drain properly, causing high pressure, which floods the space around the optic nerve, and compresses it. An MRI, MRV, and lumbar puncture to read my opening spinal pressure were the next steps to confirm my new diagnosis, and took up the better part of the next week. 

Thankfully the neuro-ophthalmologist was absolutely right, and not a moment too soon, as my black outs were lasting a few minutes now. I was immediately put on a heavy dose of Acetazolamide, a water pill, or diuretic known more commonly as Diamox, to reduce my pressure, and also hopefully prevent blindness.

This was just the beginning of my descent into chaos, a limbo full of symptoms that did not match my current diagnosis. My next referral would be to rheumatology…
 

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The “why”

I have considered writing for some time, but I struggle with perfectionism. I really don’t like attention, or the scrutiny that comes with it. 

However, writing has been suggested as a a positive coping mechanism to get my feelings out. Talking about my illness is not always an option for me.

Living on high risk medications, long-term to treat chronic illness (immune suppression, and chemotherapy for life), it can be difficult to put your thoughts in order. 

Sharing those thoughts with others can be a scary, draining, and overwhelming process.

What if its too much?

What if they run away?

How do you have a talk about the possibility of dying in your mid-thirties with two teenagers to raise?

I’m still trying to figure it out…