Trying to deal with what I can only assume is chronic pancreatitis without a doctor is unacceptable. I have to see a doctor. We’re finally going to have NORMAL health insurance starting in January. I don’t want to need these things. I was always healthy! I never went to the doctor because I never needed to! I knew I had Psoriasis, but I thought it was just an annoying skin condition, not something sinister and autoimmune.
I prefer ignorance. I prefer happy-go-luckiness. I prefer not to think about the enormity of health issues. They’re ridiculous. I’m not going to let them have control over my life.
But it gradually happens. And I have gradually come to realize that this…THIS is my new normal. And I’m not okay with it. I am sad that my life can’t be as simple as it was when I was twenty. Can’t things just be easy?! What a stupid question. Life isn’t easy, they have always said! But I’ve always wanted to focus on the positive, on the bright, on the happiness and fairy-tale endings and idealistic utopias of a perfect state of health and a successful life in the things that matter.
However, regardless of my deep desire to remain optimistic, life and circumstances have knocked me with such blows as to render me…dare I say it…pessimistic. I don’t even want to say that. I cringe just thinking about leaving the word pessimistic in this post. I don’t want it ever said of me that I was pessimistic. Please!!! Anything but that.
Call me opinionated. Call me weird. I’d prefer alot of other names over pessimistic. But, I’ve said it. And let me tell you why I think I’ve become that way.
These past two years have been blow after blow. I don’t know why. It’s been a roller coaster with my health. I honestly never know how I’m going to feel from day to day, and that is enough to really put a dent in my quality of life.
Because I never had health issues, I haven’t known my limits. I’ve pushed myself the same as I’ve always pushed myself. I still get on a roll with something, and forget that I need to take it easy, or I will pay for it later. Oh, and eating. I pretty much constantly feel pain in my pancreas area, but it’s not bad, usually, aside from “attacks” which thankfully haven’t happened often! However, I experience so many other digestive issues that go along with it, that it makes my body very unpredictable.
So, I love to eat, right? We’ve established that. Despite my love for all things yummy, I have read so much about the healing power of the right foods, along with elimination of the wrong ones, that I finally began a strict diet in September. The Autoimmune Protocol. Oh my. It’s tough. If you’re an emotional eater, it’s downright impossible. And I honestly think that trying the diet for eleven days (I made it eleven days!!!) triggered something in me. I wanted to eat everything. I relaxed some of the rules and then experienced what I can only describe as a bad pancreatitis attack, which landed me in the ER at like 3am on October 2nd.
They did labs. They said they were perfect. They did a CT, which showed the pancreatic cyst was back to almost the same size it was earlier this year before it was drained. And they told me to follow up with my GI doctor. Well, that’s easier said than done. I called for a follow-up, and was told they didn’t have anything until mid-December, or I could see his NP at the end of October. Because I felt that my questions would be better answered by the actual doctor (I mean, I need to ask him if he thinks I need it removed…and how is his NP going to know that), I chose to wait til December.
During this waiting, I’ve decided to just live my life. To me, it didn’t matter whether I had the appt at the end of October or in December, all that mattered was that their office didn’t think it was important to follow up with me within a few days of the attack…so I thought, well, I guess I have to live with this. I’ve lived in fear of what the heck I should or shouldn’t eat. I have looked up what diet you should follow with chronic pancreatitis. Without having an official diagnosis as such and only going off of what the ER nurse thought it was, and what I found out about pancreatic pseudocysts that are non-cancerous, I think it’s pretty clear that I do have chronic pancreatitis.
The thing is, chronic pancreatitis is usually found in alcoholics. And I don’t drink. I’ve only had like 5 alcoholic beverages in my life. I just think it tastes gross and I’ve never wanted it. So I just read that 30% of cases are idiopathic. Which means they don’t know why or how it developed. And then there are more rare cases where it’s from autoimmunity or it’s inherited.
I don’t know why. But it’s there, and it’s extremely bothersome. And it hurts. And I hate it. And I don’t like this new reality of mine. I have literally never had problems before the past two years. At least not enough to send me to a doctor.
I just have a hard time going to doctors. It’s strange because I worked in the medical field for nine years and have only recently become a stay-at-home mom. I worked with doctors and loved them to pieces. But I found that when I was actually the patient, and I told them all my symptoms, they seemed to brush them off or act like I was just anxious. And that has bothered me so much.
You feel a symptom that bothers you and you tell your doctor. You think they’re going to help you ferret out all the whys and wherefores, but instead you get them saying that it could be due to stress or anxiety. That, honestly, hurts. Because I don’t go to doctors. I don’t LIKE to go to doctors. And it takes alot for me to actually go and for me to actually describe what’s going on with me.
I want to be heard and understood. I find that doctors are just way too busy. I worked with them. I was way too busy! I wanted patients to hurry up. I wanted them to finish what they were saying, so I could move on to my next important duty. I get it. But now, being just a patient and not a healthcare worker anymore, I totally get the other side. Where you feel unimportant and brushed aside.
I have many examples. The GI doctor’s office I told you about? Well, I had to have a procedure called an endoscopic ultrasound so they could look at the pancreatic cyst more closely. In order to have an appt for the procedure, I had to go to an initial appt, which was scheduled with the NP. I was self-pay. I walk in, I have to pay $170, in full, for the visit. I see the NP for, not kidding, less than 5 minutes, to hear her describe a procedure I’ve already read about (because you know me, I inform myself, if nothing else) and just tell me that they’ll set me up for the procedure and call me. Then, I get a bill for $10 from their office, for the office visit…even though I just gave them $170. Okay…
No. Didn’t pay it. Tore it up actually.
So I have the procedure, where the GI doctor meets me for like 2 minutes before, to explain the risks. First time meeting him. Then, I wake up from the procedure, and a nurse is there talking to me. She tells me, over the course of conversation, that they’re sending me home with an oral antibiotic to take for three days. I told her that I breastfeed. She tells me that I can’t breastfeed for three days, like it’s nothing. I was upset and said that I wish I had known about the antibiotic beforehand so that I could be prepared! She then says, “Well we just gave you a dose of Levaquin in your IV too, so you shouldn’t breastfeed for at least 24 hours because of that.”
OMG. I didn’t know they were going to do that! I was so upset. I felt like the medical field just doesn’t care at all about explaining things. They never mentioned, in any of the paperwork, about having to have an antibiotic for a procedure like that. The nurse told me “It’s standard, anytime they do anything to you.” Okay? I don’t think that should be! With how dangerous antibiotics can be to our microbiome, we should be SO CAREFUL about their use.
That’s not all…not done complaining. Ha! So then, I have the follow up appt with a completely different nurse practitioner at the same office. Again I pay $170 when I come in. I ask the staff about the $10 bill I got, and she tells me I don’t owe anything. Then I get to the back and the NP comes in and she doesn’t have the one piece of vital information that I was there to learn. Whether or not the cyst was cancerous. She didn’t have the particular pathology on hand. She had her assistant searching frantically for it.
Now, I know what that’s like. I was a medical assistant! I hated those moments. It’s incredibly stressful to not have everything you need when the patient comes in. So I was understanding about that. But then, when she finally tracks it down, she tells me the cyst had a high Amylase level, indicating that it wasn’t cancerous. Now, from what I’ve read about pancreatic cysts, if they have a high Amylase level, then they’re likely due to pancreatitis. Did she explain to me what pancreatitis was? No. Did she even mention what I should do about diet? No. All she said was that we need to keep an eye on the cyst yearly. I had one question for her, which I don’t remember now, and she said she would ask the doctor and that they would call me.
I was busy at that time, working fulltime and buying a house. But after my life calmed down a bit, I noticed. They never called me. And I got another $10 bill in the mail from them! Oh. Em. Gee.
So, it’s to this same office that I’m going in a few weeks. I have several concerns. I want to be heard. I’m not someone who normally goes to doctors for everything. I have some serious things going on. I need to know if this huge cyst needs to be removed. I need to know if I have an advanced stage of chronic pancreatitis…I need to know if the dizziness I experience and the intense hunger I feel even after eating could indicate Type I Diabetes. Seriously, I need someone to listen to me.
This is where I bring up the pessimism thing again. You would call me downright pessimistic after all that, wouldn’t you?! So sad. I never want to be that person. I want to be forgiving, and let everything roll right off of me. But after awhile of medical incidents and medical bills happening over and over (WAY more than $10)…I come to the point where I start to remember.
I remember exact offenses from people in the medical field. I want to be how I used to be. I used to just choose not to think about offenses, and I just didn’t. I was the person who never held a grudge. I was pretty quick to forgive.
Now, I struggle with that. Probably because these past two years have been hard. I cannot tell you how hard! Adam and I do not share our struggles with just anyone, because we don’t want to burden people with our troubles. But suffice it to say, that I’ve had enough. I know it’s life, and I know life can throw curveballs, and I know that compared to some people’s situations I have no right to complain. But their stories are theirs. Not mine. All I know is what happens in my own life…and the struggles with health that I’m facing are serious, scary and seemingly hopeless.
I want to be optimistic again. No. I want to be able to be optimistic in spite of my circumstances. And only God can do that. This is where faith comes out of nowhere. It literally comes from God. Only He can give us the ability to believe. I choose to believe Him.