Hello! How is everyone feeling today?
I’ve decided that, due to mounting stress regarding my illness, I will start a Diary. I wanted to make it a part of Coffee & Chocolate because this whole website/blog/company is about HAPPINESS (“A Collection of Art and Happy Things”!) It is about healing and hope, but also suffering.
A Diary will allow me to vent but perhaps it will also encourage YOU to tell YOUR story. I believe it’s therapeutic and I would *love* for my friends to write something about their own journeys in response to my entries. Let’s shoulder each other’s stress and nurture our healing. The more shoulders, the stronger the support.
So this will be my first entry.
This past month has been quite rough and, to say the very least, scary. Thankfully I am currently in much better shape, but still recovering.
•••> On 4 October, the weekend that my nephew was sleeping over, I became sick. I had to go to the ER to get fluids and medications and was then discharged. Sadly however, I had no energy to play with my nephew that weekend. I just continued to get sicker.
•••> Whenever I would eat solid food (and sometimes liquid as well), it would come back up in a painful, automatic way. My belly would swell and I basically felt like a little cup about to overflow. This went on for weeks. I was in and out of the ER, sometimes daily, to get rehydrated and in a span of three weeks, I lost nearly 20lbs.
•••> The ERs began to get sick of me, claiming that nothing was wrong and I had no reason to be there. One doctor said to me, “I can’t keep wasting resources treating you. And you’re taking up a bed for someone who could be really sick”. Needless to say, this mortified and depressed me. I cried a lot after that and even now, I’m so humiliated when I recall his words.
•••> I became so sad and eventually started to accept that this was always going to happen. Then one evening, near the end of October, I was (very) suddenly struck with an excruciatingly sharp pain in my belly. I’ve always had abdominal pains, but this was different; I knew precisely what it was though because it felt the exact same way as when I had a bowel obstruction back in 2013 (which, thank God, was just a volvulus that managed to fix itself with some intestinal rest). So back to the ER I went.
•••> In the hospital, I was crying and writhing. The pain was pervasive and I couldn’t find a single position that would give me any relief. Every now and again, I would sit on my legs and lean forward so that my belly pressed against them, my face squished down into the mattress. At one point, I was so exhausted that I fell asleep like that. It was horrible. To make matters worse, the doctors kept telling me that they couldn’t see anything on my scans except some significant dilation (…is this not something?!) They insisted that it was not a concern and instead, I should go ahead and have the sigmoid scope that had been previously scheduled for me. Perhaps that will offer some answers, they claimed. I was frustrated because the issue was clearly nowhere near that location, so why were they just shrugging and passing me off?
•••> So we did the scope. Nothing. The pain was getting worse and I’d begun to throw up literal gallons of painful, dark green bile. The hospital that I was eventually admitted to did nothing. They refused to give me anything intravenously and continually told me that I would not be able to go home unless I ate something. They tried to force me to take pills despite the fact that I was vomiting. The pain was so bad I felt like I was losing my mind and yet they would only give me a bloody Dilaudid pill that would eventually just come up anyway. I was so scared, wondering if I’d ever get any relief. And I was so sad–I just wanted to go home and feel okay again. I cried and begged the hospital staff to let me have IV pain and nausea medicine and they continued to refuse. When I asked them for perhaps the 800th time, the nurse said, “oh no. They have your discharge papers all ready”. And they sent me home.
•••> Enter BETH ISRAEL DEACONESS HOSPITAL! My family and I had had quite enough of my previous hospital’s nonsense and so I promptly changed primary care providers as well as the network wherein I received my care. I feel a little dramatic saying it, but I honestly think this saved my life.
•••> I was admitted to Beth Israel Hospital. They put a tube in my nose to decompress my stomach (remove all of the bile that was backflowing in) and promptly did their own CT scan. Less than an hour later, a surgeon was in my hospital room telling me that I needed to have surgery right away. I had a closed-loop bowel obstruction. She told me, “this is a very concerning type of obstruction–it will cause one part of the intestine to flow forward and the other, backward. It can cut off circulation and kill part of the bowel, and it will not get better without surgery”. And so I was brought into the operating room on Halloween Night.
•••> I can’t describe the pain that I had when first out of surgery. I was put in the ICU and given a PCA (the little pump filled with pain medication. It has a button that you can press to give yourself a small dose when you feel you need it). I remember being beyond tired, but the nurses kept waking me up. I was confused at first and wished that they would just let me sleep. Eventually though, I would awake to three frantic nurses hurrying around my bed. They were telling me that my respiratory rate was 4 and my heart rate nearly 200. I couldn’t understand because I didn’t feel any different than I had an hour earlier. I was just too tired. I went back to sleep and was promptly woken again shortly thereafter. And again. And again. Just to be sure that I was breathing. As exhausted as I was, I began to get scared. Then a nurse took my arm and informed me they were going to put in more IV catheters. They were still acting frantic and said that the reason for the extra IVs was because I needed various substances that couldn’t be simultaneously infused through the same tubing. They would have to be done one after the other–but I needed them all immediately. All at once. And so I ended up with four ports: two lumens were on a PICC line in my upper left arm, one in a peripheral IV in my lower left arm, and a second peripheral in my lower right arm. They were being used for potassium, magnesium, Ringer’s, TPN (food through the veins), and a multitude of other things that I don’t even recall.
•••> I watched HGTV 24/7 while in the ICU and when I was finally moved back to the nursing unit, Animal Planet. The first few days after my surgery, I couldn’t move very well, but I had to get into some strange positions in order to drain the bile from my stomach. For some reason, the NG tube wasn’t suctioning very well and I would lean back, hold the tubing, and twist my body this way and that to get it out. The relief I felt once my stomach was decompressed was amazing, but it was so difficult to get it to work right. Then when the staff turned up the strength of the suction, it began to fill with blood. They thought that this may have been because it was irritating my stomach and they turned it back down. When my mother visited, we ended up performing little circus acts in an attempt to decompress my stomach: she would hold up the long tubing and try to “pour” it into the collection jar and I would lean this way and that, trying to get the right angle. We eventually got it.
•••> I was in the hospital for seven days, all the while receiving TPN for maintenance (as well as to restore some of the weight that I’d lost). The plan was to send me home with my PICC line and TPN but we couldn’t get anyone to manage the prescription for the parenteral nutrition and the line was pulled. I ended up going home with nothing for maintenance and while I was eventually able to eat enough to keep myself functioning (soft fruits are the way to go!), I simply couldn’t drink/retain enough water. The plan is (and had been) to place another portacath (a type of IV that goes into a large vein near your heart. It sits beneath the skin and is accessed with a special type of needle). Through this portacath I am to receive bags of IV fluids at home (and TPN if it becomes necessary, but I don’t think that it will), however until it is placed, I have to come to the urgent care each morning to get two bags of saline to keep myself going.
•••> Throughout this entire “adventure”, my parents have been helping me with everything and taking care of me better than any nurse or doctor ever could. I don’t think they really know how grateful I am, but I would, in complete seriousness, be dead if not for them. When I first came home from the hospital, my mum made a little menu of stomach-friendly foods she’d bought that I could “order” from the kitchen. While I was in hospital, she changed and washed all of my sheets and neatened my bedroom for when I got home. I live above my parents and because of my pain and weakness, my mother brought me anything I needed from downstairs, she crushed my medications for me, and (with my father’s help) took care of my crazy 10-month-old Basenji puppy. Even now that I’m getting a little better, she and my father are still taking care of and helping me–especially with said loony puppy! I am just extremely grateful that I have my parents (and my grandparents as well) helping me. I feel horribly guilty for being so needy, though. Do any of you ever feel that way? I’m an adult after all and yet my parents have to care for me like I’m still a child. At this point, it should be me taking care of and helping them. That’s my big goal for when I get healthy.
•••> As I write this, I’m sitting in the urgent care getting my daily bags of fluids. The portacath surgery is scheduled for Thursday and shortly thereafter, a nurse will come to my house and set up the home infusion. I am extremely excited because after I get fluids, I always have so much energy (I experience salt-wasting as well, so I imagine that the sodium does wonders too). I look forward to having that energy every day… AT HOME! With that said, I’m very happy that I found my new physician and network. All of their staff and facilities are just wonderful and I’m no longer scared to go in if I need help.
Thank you for reading my story. I would love to hear yours too. I hope everyone is feeling well and happy and productive ~
P.S. – – I’ve returned to the Entry hours later. Now I’m smoking/dabbing weed and it makes me feel so much better. If you are able (and have your doctor’s okay), I highly recommend it. It helps my pain and nausea immensely, though sometimes it depends on the strains you get. I love you ~ ! Keep your chin up! There is still beauty in our worlds! 💜