Writing has not been on my list of priorities, because right now I’m just surviving day to day. It’s taken me three days to write this. My mind is all over the place, and I’m still experiencing pain and discomfort from whatever is going on. My muscle issues seemed to have cleared up tremendously, but this one area is still giving me problems, which tells me this is something bigger than pulling my back out of whack. The “twisting” effect that I thought to be my back muscles I now believe is an inflamed organ or growth pushing on everything else, thus forcing my rib cage up and over. Usually, all of this causes my other muscles to contract, which results in more pain. Stress only adds to that.
Depression is up and down, and not feeling well has a lot to do with that. There is a good possibility a physical cause has been behind depression all along for years. But it was so random and inconsistent, always passed off as something else. I have sworn over and over that I feel most, if not all, of my depression comes from the gut. If I’m right about what I think my diagnosis is, then this has been going on for a lot longer than the past several months. I have every symptom of pancreatitis.
I felt some of these scary symptoms 10 or 12 years ago, but it was random and short-lived, and I wrote it off as being either dehydrated or drinking too much alcohol or having a food reaction. Specifically, I recall walking through the commissary (military grocery store) in 2012 and suddenly feeling what I thought to be muscle cramping in the center of my back. With it came a racing heart, along with clamminess and an overall feeling like I was about to pass out. I remember stopping the cart and looking around trying to figure out what I was going to do. It subsided shortly after and that was that. Around that time, I may have been drinking more alcohol than normal, and blamed it on dehydration.
The first time I recall this feeling was probably around 2011. I was driving down I-95 with my dog to visit my husband at work four hours away. It scared me to death, because it happened quickly, and I wasn’t sure if I was dying or what. A sudden feeling at the wheel that you’re going to pass out is super fucking scary! It was that same tightness in my back, and I have probably experienced it several times. I have blamed it on back problems, because I never had pain in the front until last year. That time I blamed it on something I applied to my skin, because my back was hurting.
If it is pancreatitis, it would explain so many things, but it will also completely alter my life. If I’m able to control it by diet successfully, then hopefully I’ll also be able to control depression right along with it. But leaving the house without packing food every time seems like it might be out of the question, because my diet would be that strict.
The only meals I’ve been able to tolerate are rice, soup, fruit, liquids, and cereal. I’ve lost 4 pounds since last week (not that I’m complaining, but I’m starving.) Most solid foods cause a lot of pain and other issues. Since I’ve been on this boring, bland diet, the depression has somewhat lifted. I also notice a huge surge of depression when I’m hungry, or “hangry.”
Physical activity, including standing for more than about 30 minutes, causes pain and shortness of breath. I don’t have shortness of breath without the pain; without pain, I breathe fine. I have not left the house except for medical appointments, because walking to and from my car causes shortness of breath and pain. Same with cleaning my house or doing any normal daily routine. Taking my garbage out leaves me winded. Months ago, my back hurt while I was walking the beach, and it hurt so much I stopped. Often accompanied with all of this is lightheadedness, as if I am about to pass out, and sometimes abdominal cramping. Eating seems to be the main thing that triggers most of this, but the back pain has mostly remained constant since last year. These are the things I attempted to tell my doctor on my last visit with her when she refused to listen to me.
In the meantime, my VA doctor is probably one of the most uncaring that I’ve ever come upon. But with her personality switches, she might surprise me and come through as being nice. After my terrible interactions with her, I believe she does the minimum that’s required of her to keep her job. (In a government system, they tend to transfer people before they fire them or force them to resign, leaving them to be someone else’s problem.)
My ultrasound and CT scans haven’t shown anything significant. My doctor had the ultrasound and CT scan results last week and let me sit on it over the weekend without a courtesy call. I accessed it myself online, so I emailed her with questions about the notes on my imaging scans. In particular, something is mentioned about my liver, and when I googled it, it didn’t sound good. Another note mentioned that I had (normal) nodules on my liver “but since there is no family history…” But there IS family history of lung issues, including my (nonsmoker) brother, who just went through lung cancer! I immediately emailed my doctor with this information. She replied nonchalantly that we will update that when I talk to her by phone in October. There have been so many inconsistencies with statements in my records that need to be corrected. If she took the time to speak to my like a real person on my last visit, this wouldn’t be an issue. Unless someone asks my family history during my doctor visits, there is nowhere to report it in the VA system. Whose fault is that?
The doctor has only given me vague answers that don’t answer my questions at all, just “findings do not require intervention at this time.” At this time. Well, maybe not right now, but I need to know what this is about so that it isn’t an issue later! I have a right to know what the fuck is going on with my body! I have questions, and I want answers, but I’m not getting them. These are the types of vague answers someone gives when they don’t know the answer – which also makes me question a lot about her. (There is very little information online for someone that’s been practicing medicine for 40 years. However, I do know she’s been with the VA for at least seven.)
These are the same types of vague answers the same doctor gave me when I emailed concerns over a year ago, questioning whether she was fully reading my emails, because my questions weren’t being answered. And that is when she called me up screaming at me for questioning her. (Now, I am prepared to record any further phone calls from this woman, because she speaks to me like an inmate, not a veteran. And I am fully prepared to post that shit online for the world to hear.)
I still haven’t reported my doctor or requested a new one for a couple reasons:
- I’m afraid I won’t get my test results in a timely manner.
- I don’t have the energy.
- It probably won’t do any good. (Google “VA doctor complaints”)
- I fear retaliation.
For now, I’m just going through the motions of making soup or soft foods until I get the other results from my doctor. The past few days, I have grown fatigued to the point that I needed to lay down or nap (I never, ever nap unless I’m sick.) It’s a tired feeling from deep down in my bones, not the regular everyday tired. I don’t have the energy or concentration to listen to people talk. I don’t feel like listening to music or anything that requires me to actually listen. Cleaning the house takes a lot of effort. I can’t get any work done.
I have no idea how I’m going to support myself if this disease disables me. Or even if it eventually kills me. And this is what scares an independent person like me – having to rely on other people. I would feel better hiring help if I could. In most cases, I feel like a burden, and in others, people are completely unreliable. Worst of all, in my past, I’ve had to rely on people that I shouldn’t have had in my life, because they were the only ones there – and I can’t do that again. It’s a catch-22.