Frustrated, Helpless, but not Hopeless

Today I have feelings. I am reserving judgment on these feelings for now. I feel frustrated, and helpless, and agitated. I feel as though I am burning with energy to channel into positive things, but paralyzed in my inaction at the same time. I have fear of the unknown. “What if the things that I want to do take too much time? What if I fail? What if I sit in my anxiety so long that the opportunities pass me by, as I sit on my hands and wait for someone to tell me what I should do?” As I sat this morning, scrolling through Twitter and becoming a mixture of defeated and incensed, I decided that the best thing that I could do for myself is to write. Today, I am ever-hopeful for a stranger to tell me, “I’ve been there, and I know how to start. Let me share my experience with you!” Will that happen? Will it be you?

If you’ve read some of my previous posts, you know that I’ve recently had a few bumps in my road to being healthier. Today, I celebrate day 18 of being migraine free. Yesterday, in a follow up with my Gastroenterologist, I learned that I indeed DO NOT have colitis. I was confused, because he told me I had colitis, then had me do nightly enemas (as you may recall). So confused that, as soon as I got in the car after my appointment, I called Wave and asked him, “He told us that I had colitis, didn’t he?” Wave confirmed my memory, so all that is left is that I fought and argued and wasted so much of my time to try to get an affordable treatment for an ailment I didn’t even have. The doctor did not own this mistake. He acted like this was just normal to tell someone that they definitively have something, then act like you never said that.

Fodmaps diet bowel map including explosive gas

He asked what my symptoms are, if any, and I told him that I have dull abdominal pain every day, peppered in with sharp pains that feel like lightening, and when it’s time to go to the bathroom, I have about 10 seconds to get there or all hell is breaking loose. He sat back, silent for a moment, grabbed a stapled set of papers from a stack, and handed me a packet describing a low-fodmap diet. It was clear from the size of the stack that this is a common handout. He looked again at the pictures from my colonoscopy, commented that I had some internal hemorrhoids that he didn’t think to mark during the procedure, and said that the inflammation I had was simply irritation and not infection. He pointed to the diet and said that obviously I am eating something that’s irritating.

I left the office much like I leave most doctor’s appointments. Irritated, agitated, and a general feeling of loss for the time and money that I’ve wasted. This is my second go round with a Gastroenterologist, and both experiences (twenty years apart from each other) have been similar. No answer but suggestions to reduce stress and cut even more foods out of my diet. That will be $1,500, please.

F*ck you Pay Me Meme

I have spent the last several years learning about food and food sensitivities, and streamlining my diet to try to manage the IBS that I was diagnosed with as a young adult, which has led me to veganism. In addition, there are several fruits, vegetable, and beans that I need to cut to see if these are my current problems via elimination diet. What makes me laugh a little is that a friend of mine showed up at my desk about a year ago with the exact same hand out. She has diverticulitis and colitis, though. I have nothing but IBS. I feel almost exactly the same as when I got the original diagnosis, which is, “I don’t really know what is wrong, here is a diet, do that, go away.”

To clarify, I don’t think that IBS is nothing. I have lived with it for as long as I can remember. It is painful. It is embarrassing. It can take over your life if you let it. It is frustrating. It is lonely. It is something that you have to champion for yourself. The pain can lead you down dangerous paths. What it has made me learn is that no one will fight for me better than me. It has taught me that I have the power to become my own healthcare manager. I have the ability to research, ask, relate, and try methods that a doctor might not ever recommend.

I also want to touch on the ever present ‘maybe you need to eliminate stress’ suggestion. This was the only suggestion that the first Gastroenterologist gave me. This and a prescription for an anti spasmodic as they were sweeping me out the door as quickly as possible. I am a rule follower, and a person in authority gave me a rule to ‘eliminate stress’ without any guidance. I did what any twenty year old would do. I took up drinking my cares away. Soon after, I took up smoking cigarettes, because then I could take breaks at work! After I figured out better ways of managing life, I learned how to eliminate stress through exercise, thoughtfulness, coping skills, and good planning. I am not a stressed person. I sleep well. I eat right. I exercise. I talk out my feelings. I don’t internalize stress. Yet still, physicians and others counsel me to stress less. To me, this is silly and generic advise that needs to just stop! It’s like saying that to lose weight all you have to do is take in less calories than you expend. FALSE! This is generic and misleading, and quite frankly, LAZY! Every single body is different. Every body is delicate and intricate in its inner workings. Everyone has different optimum hormone levels. Some bodies can stretch and bend and do yoga well. Some bodies have shorter muscles and tendons, which make it all but impossible to do yoga. Some people can put away an entire pizza and not gain an ounce. Some of us can look at a pizza and gain a pound. If you issue any of this advice, please stop. Join me and stop. It’s insulting. We are all individuals, and what works for me, may not work for you. Not everyone handles stressors in unhealthy ways. Not everyone is able to just drop 5 pounds in a week. Not everyone can go from couch to marathon with ease. So stop.

Ok, so back to my feelings. My stated goal for this year is to be a voice in affordable healthcare reform. I am feeling lost at the moment. It’s one thing to have a goal. It’s entirely another to figure out where to begin. I am frustrated with bad physicians. I am angry that I have paid so much money for an “I don’t know” diagnosis. I am flabbergasted that not only did I have to lie on a table in the most vulnerable position and listen to a man (who is not an anesthesiologist, but a nurse anesthetist (to correct my earlier post)) talk about pounding breasts and watching me like a stalker, but who is also going to be billing me for more than the facility and the doctor who performed the procedure COMBINED. I am appalled that I have the privilege and access to healthcare, and am able to pay my bills, while women who sit one department over can’t even afford to carry the low cost company health care policy because it’s either daycare or healthcare, but not both.

Where do I start? Tell me! PLEASE! Well, even if you’re not the person who is supposed to share your experience with me today, I know this, dear reader:

You’re probably NOT crazy (though sometimes, if you’re like me, you have your suspicions after meeting with doctors…)

A Study in Ridiculousness: My Experience With Treating Colitis (so far).

If you read my last blog, which I know that you must have, you know that I have a very recent double diagnosis of Colitis and a Cavernous Malformation on my cerebellum. There is not much to talk about with my brain, other than I am working with my Neurologist to realize my dream of having an actual picture of my brain on a coffee mug. We are also working together on a migraine strategy, which has no obvious triggers at this time. Any input from you migraine sufferers out there is welcome! We are mostly sure it is not food related, but open to suggestions.

That leaves us with the colitis. Not just the colitis per se, but my experience with insurance, doctors, and healthcare during this, my time of medical need. I think it is important to note that as I am writing this blog, I conscientiously did so while holding a treatment enema (you read that right) in for at least 30 minutes, but ideally, over night. Remember that as you are reading my words. We will revisit this.

My insurance plan year renewed on December 1st. I was able to see my PA and get the MRI on my brain, and see my Neurologist once before the plan year ended. So far, 26 days in, I am responsible for a Neurosurgeon visit ($250), a Gastroenterologist visit ($250), a Colonoscopy ($415), the facility charge for said colonoscopy ($765), the creepy anesthesiologist who is not covered by my state’s largest insurance provider ($1220), and now, the medication. I technically met my deductible about 10 days into the new plan year. However, it all depends on how quickly the providers bill. They demand payment up front, but then some drag their feet on billing the insurance company. The issue here is that you, the patient, are eaten alive in medical fees that are required upfront, when your insurance could be kicking in and covering the majority of the fees. This is the case with the treatment for colitis.

After the colonoscopy, my doctor came in and told me everything looked great except for the colitis he found and showed me the picture. It was biopsies, a prescription was handed to me, and I was asked to visit his office in 3 weeks time. He mentioned that there is a coupon for the drug he prescribed, so I knew there was going to be a problem. In the meantime, I have no idea what colitis is, and trying to research it leads me nowhere. There are so many different variations that mean different things. I figure that I will get a better picture when I visit the office after three weeks. We went straight to the pharmacy to ask about the medication cost and get it ordered.

My belly just made a screaming noise at me. We have 10 minutes minimum to go on the enema.

I asked Wave to inquire about the cost of the prescription. I knew in my mind a dollar figure that would be acceptable, and hoped that it would fall well beneath that. Considering I just spent at least $1,500 in 10 days, I need to be mindful of what we can afford without murdering our savings fund that is ear marked for new air conditioners next year. The pharmacist took a moment and reported back that a 30 day supply was $990. WHAT. Suppositories. That you put in your bum. 30 of those were almost $1,000. You’ve got to be kidding me. I asked for the prescription back, and called the doctors office the following day.

First, I spoke with billing. I asked when everything would be billed to my insurance company. I was told that they were at least 2 weeks behind, and I shouldn’t expect anything sooner. I explained that the doctor asked that I be on this medication that is $1,000 for one month without insurance and asked if they could try a bit harder in light of these circumstances. I was told they are doing the best they can. Really? Is that really the best you can? I have a job with clients. If they are in a bind and need help, I can always try harder and do better. Accepting this answer, I ask if I can speak to someone who can help me to get a more cost effective medication. I am transferred to the receptionist.

30 minutes achieved! I feel like a real astronaut now. (I tried to find a picture from the enema scene in the movie ‘The Right Stuff’. The internet has failed me.

I explain to the receptionist that I am not a Rockefeller, and I (like most people) can’t afford to shell out $1,000 for something that I will be shoving up my ass for 30 days. She said that she also could not afford that, and was sending a message to my doctor’s medical assistant to get a different prescription. In the mean time, another migraine, more urgent bathroom trips and stomach aches, and extreme fatigue. After 5 days, I call again, and explain that I still do not have medication to deal with the colitis that the doctor found. I was told that the doctor JUST responded to the medical assistant, and they would call in the prescription right away.

I seem to be lucky in that every time I call a service provider to follow up on a request, the person in charge JUST responded. I mean, my timing is impeccable I guess.

So, the pharmacy robot calls me to tell me that the prescription is delayed. She tells me that it is the EXACT SAME PRESCRIPTION THAT I TOLD THEM THAT I CAN’T AFFORD. I am now at a cross road. Do I just let it go through and hope that my insurance deductible is met by the time it arrives? In speaking with the office, I don’t have a lot of hope for that. So, I call. I tell the receptionist who was nice enough to help me before what happened. She is now irritated with me and tells me that all she can do is transfer me to the medical assistant’s voicemail. “Look, I am almost at the end of my rope here. You can transfer me, and she won’t get back to me, and here I am, with these bad things happening, and getting next to no help here.” The snark was thick. I felt bad, but at the same time, I think of my clients, and how I treat them. The feeling disappeared quickly.

The pharmacy called me two days later, my new prescription was in! It was December 22nd. The colonoscopy was on December 14th. My insurance deductible was just met that day, so I went to the pharmacy to collect my prescription. “That’ll be $15, please.” I happily handed over the money, and was handed a huge sack. “Do you have any questions?” Embarrassed, I said no, and left abruptly. I quickly realize that I was prescribed daily enemas. Not only that, but I was expected to hold the fluid in my body for at least 30 minutes, but ideally all night long. WHAT? Who comes up with this stuff??? Not only that, but the cost without insurance was $630 for two weeks, or $1,260 per month. The medical assistant called in an even more costly prescription. WHAT IS WRONG WITH PEOPLE?? I called the pharmacy and asked them to please fill the platinum suppositories, and asked if I could return this nonsense. They refused to return it, and I have since come to learn that it is almost impossible to donate unused medications to people in need.

The pharmacy called today, December 26th, to tell me that the prescription was ready. The amount? $370. Much less, and yet still, unaffordable. I remembered that the doctor said that there was a coupon online. I looked, printed it out, and took it to the pharmacy. Even with the coupon, the cost was $130. As an astute accountant, I immediately multiplied this out by 12 and mentally reviewed our budget. On principle, I refused to accept this. I can pay $30 a month and do enemas, or pay $130 a month for the luxury of not doing enemas.

So, as I sit here, holding fluids in my rear end, I reflect upon people who can’t afford to buy insurance. These aren’t deadbeats. These are people I go to work with every day. They are not lazy. They never call in. They aren’t relying on welfare. In fact, most people who are on welfare aren’t lazy either. They have actual, verifiable needs that we as a society should chip in and help. I know people with devastating diagnosis’s who have been told that they don’t qualify because there are still some jobs that they can do. The idea that America’s welfare programs are clogged up with lazy people who have multiple kids just so they can stay home is a fallacy. I have always been very healthy, and have never really understood the need for medical insurance until this time in my life. I am coming to realize that I need to advocate for affordable healthcare, and be a voice for those who don’t have one.

I am happy to say that I still have this enema held in. It’s medications are soaking through the walls of my colon. My colon isn’t super happy, and is making that clear through. all kinds of noises. However, I am finally starting to treat this thing.

I would love to hear your stories. Medical bills are the number one causes of bankruptcy in the United States. Together, we can be a voice for change.

As always, listen to your body. You are the only one who recognizes its voice. I know it is telling you this…

YOU’RE PROBABLY NOT CRAZY!!

Where The Heck Have I Been?: A brief synopsis

Hello, again, my friends. I have been absent from blogging and social media for several months. Some of you have noticed. Most have gone on with your busy lives, not even missing the weekly Monday drops. It’s ok. I don’t think my own family even reads these things. As a child of a divorce and re-marry situation, I don’t take kindly to anyone who makes an assumption that I know anything different from the information that they last told me. I hate when a tv show or a book leaves you in one place, then picks you up three miles down the road with no explanations, just inferences made in hopes that we are all bright enough to connect the dots. However, the inferences are generally sub-standard. With this in mind, I’m offering a short blog to catch you up, so we may begin volume two.

Starting back in late September, I had decided to start writing another book. I promised I would pop in with semi-reliable blogs, but really wanting to focus on the book. I did follow through on a few blogs, and then everything went silent. Even my real life friends and family were perplexed. It wasn’t just silence in blog-landia. It was silence on all fronts. I had some people send simple one line texts, “Are you mad at me?” To which I would reply, “No”. I wasn’t mad. That was the absolute truth. The whole story goes like this…

In early October, I had a migraine. It was no big deal, I usually get one or two a year. What made it a big deal was getting another one 4 days later. Then another 5 days after that. Then another. And another. And more. I stopped counting after 10. Instead of getting help or admitting defeat, I kept going to work, and hiding my symptoms. Then I started shitting blood. It wasn’t just black turds like we all see from time to time. It was straight up, bright red, “Did someone just get murdered” red. And it wasn’t a little. I called my PA (because the doctor of the practice never sees me anymore), and scheduled an appointment with her. Reason given: Migraines. As any of you who are American know, it takes a week or so to get worked in if you are a current patient. I waited about a week, had another migraine, then went to meet with her.

My PA has been pretty good to me. If she’s in over her head, she refers me to a specialist instead of trying to deal with it. While checking in, the medical assistant asked me really silly questions, like “Does it hurt to move your head?” Or “Is it like a dull pain or a stabbing pain?” Or “Does it hurt to go from sitting to standing?” I am just really happy for anyone who has never had a migraine, and those of us who have them know who you are. Anyway, in talking to my PA finally, I expressed that I wanted an MRI or a CT scan to make sure there was nothing up there, then I would seek out help from acupuncture. She kind of rolled her eyes, but agreed that it’s better to put my fears at bay and check things out. I mentioned the blood, and she paused, thought about it, and told me to keep an eye on that and call if it happened again. She and I both agreed that we expected to find nothing on the MRI, but it was good to check things out, just to make sure since the migraines were way out of character.

A few days after the MRI, Shanna (my PA), called me and had a strange tone in her voice. “So, I have your MRI results. Looks like there is something there after all.” The Radiologist couldn’t tell if it was a tumor, or a cavernous malformation, either way, this was far outside of her pay grade. I don’t know if you’ve ever gotten news like this. Chances are, you have. For me, I felt a very clear moment. I had a choice. I could cry and be scared and start calling everyone I know, or I could be calm and fearless. One of my dearest friends (who I KNOW is reading this) had a brain tumor removed many years ago, and I thought of the grace that she had while in the midst of that situation. I chose to be like her.

I got in with what turned out to be an amazing Neurologist about 10 days later. We spent an hour and a half looking at every scan, making notes, asking questions, and hearing him say over and over, “…but WHAT is THAT?” It was decided that the migraines, which are not being caused by Alf (my name for the new part of my brain) needed to be assessed by a Neurosurgeon. Alf resides on my Cerebellum, and it right in the path of where all of my spinal fluids enter and exit the building. It’s really not the best or easiest place to get to, so a second opinion was welcomed.

The Neurosurgeon’s wait list was 3 weeks, and that was only because there was a cancellation. Otherwise, it was three months. During this time, Wave and I had some very frank end of life discussions. It’s pretty sobering to talk about what needs to happen if we do have the surgery and there is an oops that renders me in a vegetative state, or if I was to die before Lily graduates, or how I want certain possessions to be split amongst our family, or telling Wave that it’s ok to live even if I don’t. It’s ok to love other people. Hoping that my sisters will take on the role of mother to my 17 year old child. In this time, I shit bright red again, twice, and was referred to an Gastroenterologist. 2 weeks wait on that appointment, but still before the Neurosurgeon.

The Gastroenterologist was interesting. They stressed when making the appointment that I must arrive at least 30 minutes early. I ended up 45 minutes early, and the receptionist was a bit snarky about me being early. I brushed it off, as it was clear that she was eating her lunch at her desk, and sat in a completely empty waiting room. Shortly after, another medical assistant arrived, and I was treated to listening about her lunch date, their office holiday luncheon, and burritos. I tried to read the book I brought with me, but I just couldn’t concentrate. I sat and listened until the medical assistant called me back.

The doctor came in, talked with me for about 5 minutes. He noted that I have IBS, and asked about it. He also asked what exactly it is in my brain. I told him that I wish I knew. Interestingly enough, 1 in 5000 people will get a brain tumor in their life. Of those, only about 1/3 are cancerous. Most brain tumors are secondary to another illness in the body. There is a pretty solid link between brain tumors and colon cancer. So that was something that I was constantly thinking about. Unsurprisingly to me, he ordered a colonoscopy to take a look at the situation for himself. I also want to note that my insurance plan year renewed on December 1st, so now, all expenses are out of pocket until the deductible is met.

Anyway, we see the Neurosurgeon, who is a very bright and highly recommended professional. He was immune to my jokes. I did the same tests (very similar to sobriety tests) and answered the same questions. Then we looked at my brain again. The surgeon also found that at one time, this area hemorrhaged. There is also a misplaced vein in the area, which in the past, would have been cause for an immediate surgery. Thankfully, this is no longer true. His professional assessment is that this is a cavernous malformation. He would be willing to remove it if I wanted to be aggressive. You all know me. I’m a wait and see kind of gal. Also, if it were to be removed, it would be a pretty heady (pun intended) surgery, with a very difficult and long recovery. We decided on a schedule of brain scans with immediate changes if the pattern of migraines worsen or if I start to lose dexterity or balance. If it grows in size or bleeds again, it will need to be evicted.

Hurray! But this doesn’t solve the blood shitting or migraines.

The colonoscopy is scheduled for the next week. It was easy. People cry about the prep. It’s really not a big deal. You shit your brains out, but you get a clean slate. The procedure goes off without a hitch, except the anesthesiologist makes a creepy joke about his wife at home pounding breasts for dinner…chicken breasts of course. Also, that he is just like Sting, and will be watching every move I make and every breath I take. I get the dude’s intentions, but no. This is NOT ok. I don’t need to be put at ease. It’s not like this is brain surgery for crap’s sake. Stop being a creepy dude and just be quiet if that’s not possible.

So it turns out, I have Colitis. And the cavernous malformation on my brain is also referred to as a lesion. We are dubbing this ‘The Col-esion”. Like “Collusion”. Get it? HAHA. Still no migraine answers though.

I think you are all up to date now. I will be sending out another blog in the next day or so, documenting the treatment plan for the colitis, not because any of you want to know, but I believe that a lot of what I am experiencing is highly relatable. You can judge for yourself. I also want to point out that I have no idea what colitis is. But we will get into that as part of the relatable aspect.

The next time you see your doctor, and you know that something is wrong, don’t let them roll their eyes at you. You know why? You know your body best, and also…

YOU’RE PROBABLY NOT CRAZY!!!