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

When “no cure” hits home.

I didn’t get it at first when they said there is no cure. I thought I “got” it through to my head, but honestly, it’s taken more than a year to get to the point where it finally hits home. No more mental running away. This is it. Behçet’s is here to stay, and I will need chemo, and ever-increasing interventions, until I pass away. It’s a hard pill to swallow at any age, but it’s especially bitter for the young—those who haven’t even begun to experience real life, or just got a handle on life, only to have the rug ripped out from under your feet. 

No cure.

So the port they just put in my chest is here to stay. There is no “getting better” at this point, but I smile, hide the tears, and try to find what little grace I can muster to be a grateful person. No one, except another one of the 16,000 Americans, or a handful of the medical community, can truly understand the hell it is to be trapped inside a breaking down body, that hurts with every breath I take. I can select a few hours, a few days a week to have slightly less pain, and maybe get a nap, but refusing narcotics, & opioids doesn’t get you a badge. In fact, it’s not even a guarantee that you still won’t be treated as a drug seeker when you do break down enough to brave the ER, which for people with suppressed immune systems, can be a deadly gamble. I’m still grateful for people’s love, and prayers, but I can’t explain there is…

No cure.

The country is a disaster, our president is unstable, and my government wants to take away the Medicaid that’s paying for my life-extending, and symptom suppressing meds. I still have two kids under 18, am a single-parent, and get to crawl through treatment without a penny to my name. I have fought for disability benefits for over 3 years since no one understands my rare disease. They may not even be granted before I die, and then they’ll be snatched up by the state to cover the paltry amount they’d paid out to keep me alive. I’ve gone through hell for a diagnosis, but my government scoffs in the face of science, refusing to properly classify my illness as a rare form of vasculitis with…

No cure.

Google Behçet’s Disease. Look at the Mayo’s page: autoimmune vasculitis. Look at the SSA handbook: inflammatory arthritis. Big difference when it comes to deciding how disabled a person is. This is not a case of a person with a bad back, or minor limp. I am someone who regularly struggles with walking ten feet to the toilet. I leave home maybe 1-3 times per month in total, all of which are typically visits to the doctors, specialists, hospital, and infusion center. I have no social life. My immune system is so tanked the friends I have left are too afraid to visit me. I’m lonely, broke, hurt in every joint, and my face is covered in ulcers–it’s so glamorous! Still I persist knowing there is…

No cure.

 Now I know though. No more false hopes, or wild fantasies of a cure being found. The truth is 16,000 people are not a big enough group for Big Pharma to ever profit from healing us, so there is little to no research being conducted for our benefit. There is no ice bucket challenge, or sponsor from the music, or film industry. No documentaries of our struggle for life. For a while it just ate at me, you know? The unfairness of it all. For me, there is no genetic marker, but rather check-mark, after check-mark on the childhood trauma list. Enough trauma for my body to weaponize against my existence with…

No cure.

Will I see my children graduate? Will I get to tell them how proud they make me, and be there to support them as they grow? Will I ever hold my grandchildren? My mom, or dad, will they ever understand my battles, and feel bad for abandoning us while at the same time helping so many other families through their church. Will my children get my indifference to an all powerful deity who gave me to parents that didn’t want me, a mother who tried to kill me, and the disease they left me with from the trauma? Will they love me despite all my mistakes because I fought in the face of…

No cure.

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…