Due to our low income and lack of health insurance, I went to the local Neighborhood Health Clinic yesterday morning. I was very pleased with my visit. My nurse practitioner knew exactly what I was talking about. Why that is such a relief, I don't know. Normally, when asked why am I being seen, I have to explain that I have two birth defects. When I say Intestinal Malrotation, I get confused looks and am asked, "what is that?" It's not very comforting to hear medical providers have to ask ME - the patient - what is Intestinal Malrotation. It's actually scary and makes me worried that I'm not going to get appropriate care. I've seen doctors answer my questions with shrugs and "I don't know".
First, when I went in, the Medical Assistant was new. I'm totally cool with working with new people. They have to start somewhere, and I'm very patient with them because I understand what that's like. She was very sweet. Her biggest obstacle was the computer to enter information into - and the program looked complex so I can't blame her for taking a while. Hey, at least she wasn't poking me with a needle! In Bloomington, I had a new EMT practice putting an IV in my arm.... about 45 minutes to an hour of agonizing pain in my left arm!! But hey, they gotta learn some time to save another person's life! I'll be a guinea pig.
This nurse practitioner asked ME the questions. When I told her where my pain was, she began asking me the important questions. When I told her where the pain was located, she began asking me if I had other conditions that could be causing the pain - such as kidneys, pancreas, appendix, or my right ovary. She asked me if I had acid reflux, and when I said yes and told her what I took for it (Gaviscon for those who are interested in awesome heartburn and acid reflux relief - it's great! I recommend it!) - she was able to explain to me what she thought was happening. I felt relieved that someone at least had a hypothesis!
***Warning: Gross, TMI part! Details are important, but if you are sensitive to gross details, skip this part***
My nurse practitioner asked me some important questions that I think others who experience Intestinal Malrotation pain should know. So I am going to share those with you. First, she asked if I was constipated. I said yes. She asked how long had I been constipated. I told her it ranges, probably on and off for 3-4 days, sometimes more, sometimes less. This had her concerned. She asked if my stools were hard. I said, no they are soft. She explained that constipation usually involves stools being hard. Since mine were not, she asked about the size of my stools. I told her they are very thin.
The nurse practitioner then asked if the pain I have been experiencing felt like burning. I said no. It feels like something is stuck. It feels full. And she asked if I had pain after eating. Immediately, I said yes. My husband was with me simply because I was in so much pain I couldn't drive well. He and I have witnessed everything together, so we are totally cool with discussing such details with each other. And because of my condition, he'll ask me occassionally about these details if he notices anything abnormal. There have been times when I've been in the hospital that I was seriously drugged up on pain meds that he's had to speak on my behalf, or I've been unconscious from pain that he's had to speak on my behalf. Anyways, this is when he stepped in and said that when I eat, my stomach automatically swells while I'm eating. By the time I've finished eating, I look 3-4 months pregnant (and we know because I was at one point in time!). I told my NP that I get extremely tired after eating.
She asked me about nausea, and I said yes. I always feel like I'm going to vomit. Because I have not, my NP said that my bowels have not twisted, but they could be positioned awkwardly. My NP said that if the pain persists and I do vomit, I should go to the ER immediately. However, she said that something is causing a small block, and that's making it painful.
She asked me about gas - have I been passing gas more frequently or burping more frequently. I said yes. She thinks that my Intestinal Malrotation and my acid reflux are working against each other and creating more pain. She believes that I could be experiencing a common side effect with Intestinal Malrotation relating to Intestinal Peristalsis - meaning that something could be preventing my digested food from moving through my intestines.
Because of my symptoms and history, the NP prescribed me Docusate to help with constipation. So far, I have been taking 2 a day as prescribed - and while I am passing stools - it feels like my freaking miscarriage. It hurts so much, I can't even work or sleep. Not going to lie, I've been back and forth to the bathroom, crying every time. I'll be in there for over an hour with little or no luck. Who gets laxatives and still can't poop? I guess, people like me....
***OK, we've passed the gross part. YOU CAN READ NOW!***
Because my pain is in the upper abdomen and along the right side of my abdomen, it can be difficult or time consuming to find exactly what is causing the pain. So many important organs fall along the right side of the body, and with patients that have Intestinal Malrotation, their intestines are included on that right side. The Neighborhood Health Clinic cannot do x-rays on the spot. So I have to wait until Thursday to get abdominal x-rays. It takes about a week for her to receive the x-rays, so I have another appointment with her that following Thursday. She's going to collect my medical records and review what procedures I have had done already, and see what tests and procedures I should do now after she reviews my x-rays.
I'm very lucky I have a job that is flexible with me. I've still managed to pop into work once in a while. I worked half a day yesterday, even though I was in pain. Everyone told me not to bother working today. My father-in-law has been very sweet about it. He's been making sure I'm still OK, checking on me once in a while. He brought me icecream last night, but I was in such pain I couldn't eat.
Travis has been my rock - as always. I love him so much. He's been taking care of me every second he can. I don't know what I'd do without him. Last night, I cried for so long. Here I have a degree, but with my condition I can't have a career. I can barely work with this kind of pain. Here, I have so much in student loans to pay back, but I can't even use my degree. Hell, I can't even find a good job with my degree. And I told Travis I feel guilty. I've put us in debt to have a degree. I was the reason we were in medical debt. And here I am... I can't even offer a good paying job to help cover expenses and give us a quality life - a normal life. All I want is to be content and normal. With my condition, how on Earth will I be able to have kids? I can't just take a day, two days, or a week off of being a mother. He can't do it all alone. I feel so completely responsible for the stress we are under and the debt we currently have.
I do have hope. Today, I was able to finally purchase health insurance for 6 months. I researched health insurance for pre-existing conditions and I found one through MultiPlan. My plan is only $117 a month. I have no lifetime limit. For pre-existing conditions, anything that costs $0-$10,000 is covered up to 70%, with the maximum that I would be required to pay is $3,000. Between $10,000 - $15,000, it is covered 80/20, with the maximum that I would be required to pay at $4,000. From $15,000 to $2 million, it is covered 100%. For anything that is not pre-existing, I have a $50 co-pay, and for health and sickness visits, I get 3 for 6 months. My health insurance is covered through STAR Financial. On top of that, most hospitals, doctors and specialists in Fort Wayne will accept this plan. No procedures or treatments will be denied coverage. However, I was required to get life insurance, which is included in my $117/month plan. My life insurance is through Fidelity. Can't say I won't need it... after all, Travis and I combined almost died 4 times during our relationship - so who knows! lol It couldn't hurt.
If you have a pre-existing condition and are looking for a plan similar to mine, I would recommend calling 1-866-421-7010 to get a quote. The individuals I spoke to are Chuck and Yvonne.