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

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…