Health

All the king’s horses…

Every time something scary happens with my health, I am forced to take a step back, and examine my treatment plan. The way we treat my disease changed significantly over the last year, since the symptoms of Behçet's Disease are not well controlled. The last few months have been quite the roller coaster ride, to say the least. I have been on chemo infusions every 3-4 weeks, and immune suppression for a year, but I still have the same swelling I started with.

When your doctor agrees treatment is not working, and it is time to try the big guns, it is kind of like a "holy shit, I was right!" moment, but it brings no joy. Instead I got extra blood work before I left that day, to make sure the drugs they wanted to try on me wouldn't kill me. I was so detached that I felt like I was floating next door to the lab. My pulse was roaring in my ears.

Normally, I am a pro at blood work, to the point where I barely even feel a butterfly. Not so much that day. I must have jerked as the phlebotomist went to remove the needle, but it's not like blown veins are not something I'm used to. (That's why my doctor suggested the power port in my chest.) I felt dizzy. The phlebotomist told me to stay in the chair while she grabbed me some juice. Typically it's not a big deal, but I guess my body was irritated about giving up nine tubes of blood before breakfast.

I tried to be a "normal" and thanked her for the juice. Two seconds later I tried to take a sip, bumped the ulcer on my face, which immediately started bleeding, and poured the mini-can of apple juice mostly down my shirt. I got a tissue, applied some pressure, tried to go crawl under a rock to die, but my partner was waiting. He sat so patiently while I tried to collect myself. I got the bleeding stopped, and used the few tissues I had left to mop up my soaked bra, and chest.

I wish in these moments I could remind myself that "normal" is a setting on the dryer, and everyone who was staring at me had their own bad days too, but the weight of my previous conversation with the doctor was heavy on my mind. They were going to get me IVIg. There was a good chance it could put me in remission, or at least quell my pain, and symptoms. I thought, "what have I got to lose?" and, "it's just another infusion," but within 24 hours of treatment, I knew I was wrong.

Most of the next two weeks were in, and out of the hospital (where I was admitted at one point), and doctor's office. It turns out the IVIg Infusion had caused aseptic meningitis. I am no stranger to headaches, I have had my share of migraines too, one lasting 9 days from elevated intracranial pressure, caused papilledema. They all paled in comparison to this pain. At one point my head, neck, back, and spine all hurt so bad I was being given intravenous dilaudid.

However, about 10-12 day after the IVIg infusion, my joints were feeling better than they had in over a year, and some of the swelling in my mouth went down too. I had to choose if I was willing to risk the pain of meningitis again in order to get that tiny window of payoff. I'm still on the mend from a hospital acquired infection, but here I go again… Chemo is this Friday, and IVIg is about two week from then. It will be two doses this time, given over two five+ hour infusions, two days in a row. I won't lie and say I'm not scared, but I'm willing to risk it once more just for the hope of a bit more time feeling "normal."

Fingers crossed!

autoimmune, Behçet's, Behcet's Disease, chemotherapy, chronic illness, Health, port, vasculitis

Coping with pre-op fears

I’ve known for the last month or so that a port was going to be necessary for me to continue infusion therapy, and stay alive. The veins in my arms are shot after a year of getting pumped full of Infliximab every four weeks. Discontinuing infusions isn’t a option if I want to keep walking, and try to ease the symptoms of Behçet’s Disease on my body. The symptoms are quite severe for me, and seem to be worsening quicker than any of us suspected.

I’ve been on a liquid/soft food diet for over a month because of the swelling, and ulcers at the roof of my mouth. A 50 mg taper of prednisone, and a round of antibiotics has barely had any effect, and I’m on the max dose of Infliximab (10mg/kg body weight) already. Some of the veins in my arms have collapsed, others are too heavily scarred to be of use. So a port it is…

I’m not happy about it, although I’ve been told this will make things easier, and less painful for me in the long run. I have been distracting myself every way possible, and temporarily put on medication to keep me calm while I wait, since I was in utter panic mode. I’m a complete needle phobe, but I’m able to use meditative breathing to make it through IV insertion. A port however, is too much for me to breathe through with active PTSD. So after I breathe through getting an IV at 7:30 tomorrow morning, I’m going to be put under sedation for port placement.

Maybe I’m a fraidy cat, but me-ow, so my choice, and I’m not going to feel bad about it. Behçet’s symptoms are exacerbated by stress, so it’s better for me to ask to be put under, if it is at all a choice. 

Now, I just have to make it till the morning. 

19 hours, 44 minutes, and counting…

Uncategorized

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.

Uncategorized

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? 

Uncategorized

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…