Tough decisions always come with a lot of emotional baggage, so let me be real with you. I am scared. Literally petrified that no matter which choice I choose, it will be the wrong one.
At my most recent infusion, the nurses drew blood for a drug-level check and scheduled me for a follow-up appointment in two weeks. I left with the knowledge that I would likely be getting my infusions upped from every eight weeks to every six, pending insurance approval.
I spent the majority of the time prior to my follow-up pissed off that I had to return–again. It felt like a complete waste of time. No one has been hearing me, they don’t want to listen when I tell them about the blood, the pain, or the headaches and they don’t want to talk layman’s terms with me or give me the full picture. So why the need for a follow-up? As in, why now? Why not a year ago when I came to them with a butt that looked like scar face, or six months ago when I was STILL complaining of fatigue, bleeding, headaches, a leaking bellybutton, and insomnia?
I predicted one of two things would happen: I would show up to learn that insurance, in a random act of benevolence, had approved the request for a dosing switch; or I would show up and leave just as frustrated and defeated as when I arrived.
I never prepared for the third scenario. The one where the nurse decides to shut the door on Remicade. I started this medicine in June of 2014, one thousand three hundred and thirteen days ago. I want more time with it; I want more days.
Why? Well, three and a half years ago I sat in a room with a nurse who advised me of the perils that go along with biologics. If you start a drug and it doesn’t work, you could effectively be cutting years off your life… or so it was presented. It seemed like a last resort, not a spur-of-the-moment whim. With less than a handful of FDA-approved drugs on the market, starting a biologic at 24 wasn’t what I had planned. But, as I said, I was never really given a choice; I picked my pregnancy and never looked back.
I have never regretted the choice I made; in fact, I would do it over and over again. What I do regret is not reading the material and learning the full scope of the medicine. At that point, I was so focused on getting better and going into remission to protect my child, that I never saw a reason to get informed.
Now that I am faced with the daunting realization that I am days away from getting a new med, I wish I had more scientific answers. The only ones I have are emotions and answers of the heart.
I am afraid to risk the decent days I have now for the potential to have more. I’m 27 with two little kids; I am not ready to give up on this drug. I want to run the clock; I can take the 3 or 4 weeks of feeling like crap if that means I can stay on the meds. I want more than anything to see my kids grow up. Maybe that doesn’t make any sense, and maybe the new meds really will give me eight better weeks…but if it were your choice, your kid, would you risk it? Would you risk the manageable for an uncertainty?
All that being said, the nurse told me that meds have come a long way in the three or four years since that appointment. She agreed that yes, they told patients the same thing I was told, and yes that might have been true then. She said, “Things are different now, we have new meds now.” She proceeded to list a few and there was only one or two that I had never heard of. That would have calmed me down, had she not followed it up with the statement that she wanted to give me 12 weeks on the new medicine before she pulled it.
12 weeks?! That hardly seems like enough time! That isn’t even two infusion cycles. How did she go from telling me not to cry, that there are more drugs available, to then talking about killing a second medicine – all in the same breath?
I don’t know what to do. I don’t want to quit this medicine if there is a potential that my low drug level has to do with something else, especially when I don’t have any antibodies. I also don’t want to keep beating a dead horse.
People tell me to do the research, but how? I’m not a doctor, I cannot read half the reports and studies, and the only thing everyone agrees on is that they have no idea how or why this disease affects people differently.
What do I do?
Tough decisions always come with a lot of emotional baggage, so let me be real with you. I am scared. Literally petrified that no matter which choice I choose, it will be the wrong one.
New Year’s — a time for making plans and rewriting the past. For me, I choose to look at it as a clean slate; you cannot rewrite your past but you can learn from it. I am who I am because of the things I have done and because of the things that have happened in my life.
I am a product of nature and my own environment.
I was curious about the history behind New Year’s resolutions so I decided to look it up. It led me to an article about the ancient Babylonians. I read that after a festival they crowned a new king and made promises to the gods. Should the Babylonians keep their promises, their gods would favor them in the coming year.
I have never been the religious sort but I am starting to understand the depths of its meaning and comfort. To what end, I am not quite sure. What I do know, is that you don’t have to be religious to believe in something. This year, I am choosing to believe in myself.
The act of making resolutions always seemed disingenuous to me. It felt like another opportunity to let myself down or to disappoint myself. False promises, if you will.
Playing it safe never built character, so I decided to go against my previous inclinations and make a few resolutions. Four of them, to be exact.
Find familial fulfillment.
When all the scary stuff of the last few weeks went down, it wasn’t my career or more ambitions of grandeur that I was scared of losing, it was the wreckage of my family that ate away at my core. I was scared of what would happen to them. I was worried about how the kids would react or perceive me if I was forced to make uncomfortable decisions. This made me realize that my family truly is the most important thing in my life.
You’re probably thinking that is a given, right? It should be a given. However, I have spent so much time and energy trying to prove that I am more, that I am better than this disease that I put my work and my schooling above other things. Including my health. I don’t want to do that anymore. I should work to live, not live to work. My kids need to come first. My husband and our family need to come first.
Stand up for myself.
I never want to hurt anyone or make them feel as small as I have. Oftentimes, this leads to me keeping quiet or trying new medicine after new medicine, when all I really want to do is shout and exclaim that I am not being heard. Not standing up for myself seeps into every aspect of my life, not just when it comes to doctors. This year, I want to make every effort to be heard. To stand up and say the things that I am thinking.
Share my truth.
I have recently started to talk about the uncomfortable things that go along with having an autoimmune disease. I want to continue talking. I want to keep having those awkward and untoward dialogs. I want to share my truth with the world in an attempt to shed some light on often-ignored topics. My truths are mine alone, but maybe just maybe, they are someone else’s too.
Spend more “fun” me time.
I don’t know the actual numbers, but if I were to bet I would say a good 90% of my alone time is spent in service of something else. Be it commuting two hours a day for work, spending 40 minutes at the pharmacy waiting for a prescription, spending countless hours hooked up to an IV pole, cooking, cleaning, or just lying in bed praying the pain away.
I want to try and take some time for me. Time just for me that isn’t spent being in pain, being isolated, or angry. I want to shy away from linking alone time with the above-mentioned negative connotations.
I want every year to be better than my last, 2018 being no exception. Don’t get me wrong, I want to lose some weight, read more books, stop cussing, or learn a new language. These things all take effort and energy that I don’t necessarily have. While the resolutions I made also require effort, there is no way to fail in my pursuit of achieving them.
In my opinion, that makes them the perfect resolutions for me.
What are your new year’s resolutions?
The roads were still an absolute mess getting home but we weren’t stuck for too long. Rather, not long enough that we turned around again but definitely long enough that I had never been so happy to be home!
It couldn’t have been more than ten minutes after we walked in the door that the phone rang. It was one of my Infusion nurses letting me know that they had an available CT slot for me. In three hours. In another city.
With traffic being redirected into my little corner of the world, I had to leave over an hour and a half prior to ensure I would get there on time. I really didn’t want to risk missing the appointment, even if my stomach hadn’t quite gotten over the previous day’s testing.
This time I went alone. Probably because I was too sensitive but definitely because I needed the space to fall apart. When you grow up dealing with this stuff alone you learn to stay that way. I never fully let anyone in or tell them my fears, not the real ones. Not the dark and potential reality fears. No sense in making others feel like they are also flapping in the twisted nether.
The tech (whom I later learned was in training) came out with three giant cups of water. I asked why I wasn’t doing iodine and she said that the particular test ordered could be done with either water or iodine. I was skeptical but I wasn’t going to question her.
Remember what I am always saying? Be an advocate!
I should have pushed the issue a little harder.
I wasn’t layered up much and between the AC vent above me and the ice-cold water I was pounding, I was shivering. Even the anger simmering beneath my skin couldn’t warm me.
When it was finally my time to head back (they usually give 45-60 minutes to drink the prep), I was escorted to a curtained area and told to put on the gown. I was more than ready to have this be done.
I should know by now that nothing ever is that simple.
I was lead back into the radiation room and was about to lay on the exam table when the radiologist came in and put a kibosh to the test.
As he tells it, there is light contrast (iodine or water) and dark contrast (barium, etc.). My doctor ordered light contrast but indicated that he was concerned I had an intracutaneous fistula OR an abscess. Apparently, light can tell the radiologist if there is an abscess, but only dark can see both a fistula and an abscess.
I didn’t exactly take the news well for several reasons. One, I was standing in a room full of radiation in a freaking half-open gown crying in front of two men–two strangers–two people who did little to earn the tears. Two, I had been sitting in that drafty tomb (that’s superfluous drama) of a waiting room sipping water in fear while they…what? Didn’t read my chart? Also, three might make me sound spoiled, but who does the radiologist think he is to overwrite my doctor’s orders?
Obviously, I wouldn’t want to have to do another CT even if my insurance would approve it, which it sounded like the radiologist was trying to avoid. He was willing to do the injection/scan but he said if it didn’t uncover an abscess, I would be no closer to figuring out what was wrong with me.
Given the hour I was not able to complete the test that night. Instead, I was sent home with two bottles of barium and instructions on how to prep and when to arrive.
Barium is probably one of the worst things I have ever tasted. It’s slimy and viscous. In my experience, it is always better to go with unflavored prep, but I was only given the choice between vanilla, chocolate and banana. I absolutely hate banana, and I love chocolate, so I went with the one I would be able to stomach and not cry about not wanting to eat in the foreseeable future.
(During one of my hospital visits years ago I needed to down an ounce of some salt solution. The nurse on duty, for whatever reason, decided to drop the one-ounce salt shot into an ENTIRE 12-ounce can of Sierra Mist. WHY? I have always wondered why she didn’t let me chase it. Regardless, I was unable to drink Sierra Mist for years. It tasted like falling asleep in the ocean with Froot Loops in my mouth. True story.)
Barium is a liquid best served cold. On this particular day though, I had an hour commute to the clinic and I couldn’t sit and down the prep quickly before leaving. No, instead I had to drink the prep while driving. It was kind of awful. The first bottle went down relatively quickly and decently smooth, though the second bottle was psyching me out and getting warmer by the minute.
I was able to drink both bottles with only a few questionable burps. I was actually rather proud of myself… until I got to the clinic and was asked to drink another half bottle.
After dressing down and going into the radiation room I was asked to get on the table and raised up for the scan. Despite my abject terror of needles, I let the tech-in-training practice my IV.
I don’t know about most patients, but I am never one to turn away a student.
After the first two missed attempts, I gently advised both techs that I have a hidden yet magical IV spot on my hand. I told them they wouldn’t be able to feel it and 90% of the time they can’t see it either, but if they follow the dot (a permanent marking from 3+ years of IV infusions) they’ll hit the vein every time.
In typical fashion, they seemed hesitant to trust me or the spot. Three other failed attempts and visible sweat on the male tech’s forehead later, he was ready to try the hand. It worked like a charm. It always does.
After I was done, I asked if I could buy the two techs coffee. It had been a horrible few days, but they were the only two that actually saw me for what I was: a scared human. Of course, they declined.
As I was getting re-dressed, the male tech called through the curtain asking me to stick around after I got dressed. I dressed slowly and with uneven breathing. I kept wondering…did they find something? I have had fast calls before, but never this fast.
When I pulled the curtain open the tech came to me with a coffee card in hand. “We don’t deserve coffee, but you do,” he said. I can assure you, I was not expecting that.
Knowing I had nothing to do now but wait, I decided to treat myself to lunch after the pharmacy. When I texted my sister of my plans, she decided to drive the hour or so up to come sit with me. It was a very generous offer. One for which I was more than excited.
While sitting at the restaurant waiting for my sister, my PAC called. Final culture swabs came in, in addition to the strep and the staph, I also tested positive for antibiotic-resistant Influenza. Awesome, right?
PAC called CDC and with their recommendation, suggested I take cephalexin for ten days. One 500mg tablet twice a day for ten days.
While on the phone my PAC also asked if I had been having any pelvic issues. I kept the snarky response in my head at bay and just replied yes, reoccurring “Bartholin cysts.” (The snarky response had to do with my coming to her months ago for a quick exam, to which she brushed it off and recommended anti-fungal medicine.)
She went on to mention that although the MRI wasn’t completed and had no contrast pictures, it was not a waste. From the report she was able to glean results that indicated perianal disease. Huh, imagine…after a year of me complaining, they ACTUALLY found something.
Hard to diagnose though it may be, I felt more anger than validation.
The plan was to pick up the prescription and wait for the CT results. MRI showed something that potentially could require attention but without the contrast they wanted corroboration from the CT results.
Corroboration they did not get. CT did not have the same results. In fact, it showed differentiating information. My team has decided to go with the CT results. I don’t agree with this plan but without a medical degree my opinion has mattered nil.
According to them I was fine to resume IV Remicade. I needed to wait 72 hours for the antibiotics to start working but I wouldn’t be hospitalized for Christmas; the only true win I have felt.
At my infusion appointment I told them about the bleeding. The excessive bleeding. Would it shock you to know, I was dismissed? I was told that could happen. Of course, it can. I have lived with this disease long enough to know that, I was merely making mention that the blood was worse. Extremely worse.
Instead of being on the napkin or mixed, the blood looked like someone poured juice into the toilet bowl. I was feeling weak, more exhausted, and as a bonus, I am iron anemic.
I was sent home with an appointment two weeks out.
They drew blood for drug levels and now they are thinking I need MORE of the Remicade. We just doubled in May, and a week ago they were afraid the drug wasn’t helping…now they think I just need more of it.
Personally, I think they are taking the easy way out. I think they know I am un-winnable case.
Did I mention the disease progression? CT indicated obvious and apparent disease progression since the last CT scan a year ago.
If you have ever had an MRI what is your secret? On Friday when all the craziness was happening, nobody actually mentioned to me what an MRI entailed. Full disclosure, I never asked, either. They said MRI Enterography, and for whatever reason…I heard CT. And having had enough of them, I didn’t think to ask for more information.
I am extremely claustrophobic and not a huge fan of being rendered immobile.
We arrived at the clinic and I downed the almost 60 ounces of prep mix like a college girl gone wild.
I don’t know if the prep hits everyone the same way but it was making my insides go crazy! I had used the restroom 3 times in the span of drinking the prep and heading back to the table. After a lot of internal debate and embarrassment, I finally asked the tech if they had a Depend. Not an ideal situation, but I was determined to get through this test, whatever the cost.
For those unfamiliar with an MRI, you drink the prep mix, get strapped to a table, IV’d up, and then “torpedoed” into the machine. They had me run through breathing exercises but essentially I couldn’t move, and it felt like the machine was closing in on me.
This machine uses magnets for imaging instead of radiation. It shook with vibration and was extremely loud. Apparently, they usually have patients wear headphones with music but they were not working.
Sometime in, they pulled me out of the machine and had a doctor came in to inject a shot into my arm. I am guessing it was intermuscular because it still burns. Whatever it was, its purpose is to slow down the small bowel for a clearer image.
The anxiety kept mounting until it became too unbearable. I had a panic attack unlike any other. I started heavily crying and begging them to get me out. I knew I had to be close, I just couldn’t handle it. I needed to stand up, breath unrestrained. I kept thinking, “You’re in the homestretch,” “Think of the kids,” all to no avail.
The tech was awful and kind of rude, asking to be pulled out just seemed to make her more frustrated. I tried asking for a timeframe, getting some insight into what to expect, all while trying to calm myself. She basically said, “Are you in or out?” She asked mid freak out which left me no choice but to concede. Not even a minute after she lowered me, I steeled myself and asked to keep going. She snapped and stated that she was insistent on my answer because once I am lowered the test is over. To say I was disappointed would be an understatement.
At some point the tech informs me that they never injected the contrast. I guess that is one of the last steps for the last images they take. I cried the entire time I redressed. I cried all the way through the building and had a near fall-to-my-knees crumbling session in the parking lot.
I made it 30 minutes only to fail right at the part we needed the most.
Have I mentioned the preliminary culture results? During one of the several exams on Friday they swabbed my belly button to see what type of fluid was leaking. Cultures came back as staph and strep. Another hurdle in a sea of many.
I felt like I was in a fugue state of self-hatred. Infusion team seemed more frustrated that they would have to start the process again to get me in STAT for a CT than they concerned for me. Although they did seem truly sorry they didn’t ask if I was claustrophobic or explain the procedure of an MRI. They were so focused on getting me in that they forgot the other parts. Sedation might have made this week completely different.
The trick after the dust settled and the necessary calls were made, was to figure out how to get home. There was a massive train derailment impeding traffic. (It was all over the news and the accident closed down I-5.)
In over an hour, Jon and I had moved a mile. We were over 30 miles from home. I could tell he was frustrated; over the failed test or traffic, I never asked. I was internally beating myself up and trying to figure out how to deal with the knowledge that I would likely be drinking more prep and doing another test.
You can’t punish yourself forever though so together, Jon and I decided to take a little us time. Something that with two toddlers never happens. We turned around and got a hotel! It was the first time since the kids were born that we were alone overnight without them.
Stay tuned, the fun is only just beginning!
People tend to see what they want to see. They assume that because you tag yourself at the park with your kids, you were faking being sick the night before. They imagine that your arrival at work means you aren’t actually sick. They tend to disbelieve you, because well…you don’t look sick.
I might not look it, but I sure as heck feel it.
It is no secret that I take on too much. If I am not focusing on myself and my illness, it isn’t real, right? That age-old adage, “out of sight, out of mind?”
It never actually works. I mean yes, I am able to lose myself for a time in other projects. I am able to trick myself into believing I am capable of more. Sometimes I can go days without thinking about doctors’ appointments, blood draws, or medication.
You know what these extra projects actually do? They force me to make choices. Work or kids. Sleep or bedtime stories. Laundry or the park. It forces me to continually give.
I discovered something about myself recently, (nothing that would shock anyone) and something I probably have known all along, but only really started to explore during Mediation training.
I spend all of my time worrying about what everyone else needs. What the kids need, what Jon needs, what my co-workers need, etc. Rarely do I ever think about that I need.
In the rare moments that I do focus on myself, I feel guilty. I think of a million other things that I could be or should be doing.
I look at my kids and I wonder how they see me. Do they picture me weak? Do they see me crying, even when I try so hard to hide the tears? Can they hear my yelps and screams of agony at night? Do they wonder where I go when I am at appointments, labs, infusion centers, and pharmacies?
I wonder if they see how hard I am fighting to be an example for them.
I wonder…who I would be without this disease?
What is the use of thinking this way? I am ALL of these things. A wife, a mother, a career woman, and a chronic-illness warrior–scars and all. If I could be anyone, I would be her:
She is my ideal. She is the girl I pretend to be when my breaths come in harsh and the pressure builds. She is my “Who I would be.”
She is Intrestinal Fortitude strong.
People seem to have a common misconception about what being in bed all day looks like for the chronically ill.
It isn’t all Netflix and chill.
I had to call out from work today, which is somewhat of a rarity for me! If I am calling out, my body is giving me the business. I made it (barely) through my shower, got dressed, and even managed to feed the animals. I was running late, but I made it to the door.
I found myself standing there, just standing. I have no idea if it was seconds, or minutes, but I knew I couldn’t go to work. There was no way I was going to push myself to drive an hour-long commute in the stormy, power-outage rain we had. If I could magically transport myself to work, yeah maybe…maybe I could have bucked up and gritted my teeth.
For me (I cannot speak for others) bucking up and gritting my teeth is a full-time job. I push and I smile through the pain; whatever pain it might be that day. (Or heck, whatever pain it might be that second, that minute, or even that hour.)
Symptoms come and go, often without warning.
My neck and head were pounding. Anytime I blinked, the pain came blinding and searing. If I tried to lift my head, the ache in my neck became unbearable. I took pain meds hoping to fall asleep.
Sleep and I are in a general relationship of oil and water; we just never mix. Often the meds will help, but even they can only do so much.
I laid there, in agony. We lost power so I was shivering and unable to force myself to get up and put on warmer clothes. Nothing offered me comfort, not my pillow, Jon’s pillow, or even no pillow. Jon had just taken a shower before leaving, so I couldn’t take a bath (we have the smallest water heater known to man, on a good day we can get the tub half full of water) or turn on the TV to drown out my thoughts.
Instead, I just laid there hoping the kids wouldn’t wake early. Hoping my co-workers were not mad I had to call out, hoping Jon made it to work okay. Hoping the pain would go away…hoping for things to be different.
There is a moment when I wake, a single breath of a moment, where everything is good. Until it all hits me. The stiff neck, pounding head, and realization that my “nap” did nothing.
I could hear the kids but I was in no position to be with them today. That hurt more than the pain in my upper body. I am extremely lucky to have my brother available who watches them during the day. He just took them as if I went to work.
In a rare moment of strength…I walked downstairs and regretted it. Jackson hugged me tight, exclaiming he missed me. He was sorry that I didn’t feel good and he never wanted me to go. The tears fell hard and fast when I told him I needed to go lay down.
This is what I meant by it isn’t all Netflix and chill. These tears are the reality of a day in bed. It isn’t TV and snacks. It is disappointment–your kids’ and your own. It’s regret, guilt, and pain.
Lying in bed all day means staring at the clock. Feeling guilt like a second skin, and wishing for more.