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Things to make a hospital stay "better"

There may have been a post about this and I missed this because I'm a bit new but it looks like I'm going to have to go into the hospital, and it's not my first time but I just thought maybe you guys had some ideas that I haven't thought of. Here's what I thought of:

Bringing list of medications and diagnoses and surgeries and list of your doctors, especially if have to go to ER. Bring a small notebook to write down what doctors tell you and when you've received medication because usually my memory sucks. Comfy blanket and/or pillow Loose sweat pants packed Comfy (decent-looking) underwear packed A loose comfortable robe packed Bring a picture of family and/or pets Bring your phone with all your music and headphones (I usually can't sleep). It also has phone numbers of people you may want to call and not remember their number Bring another book to write or journal Bring a book (or magazines) Bring a coloring book and crayons Whatever art supplies you enjoy that you can make portable, or that travels easily When it's morning, and you can't sleep anymore open the drapes to let in the sunlight in, helps you to feel a little more like a normal person. Ask a nurse whenever it's possible to shower. The showers are crappy and it's a pain if you have an IV that they have to disconnect, etc.; but that little bit of water that you can wash yourself in and dry off with horrible towels will also make you feel better and more like a normal person.

This is all I could come up with to try to make life a little better when I have to go to the hospital, thought maybe some of ideas could help someone else, but I appreciate all thoughts to improve on my ideas or new ones that I can't think of. Thank you so much!

#hospitalstay #comforthospital #ideas4hospital

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A Life Update - Where Have I Been #CheckInWithMe

I was going to start this off by apologizing for not posting and for not being as active, but something I say to others and that I believe in very strongly, is that health should come first. And that’s what I had to do for the last week. I took some major steps to (hopefully) sending my health down the right path.

As some of y’all know, my pressure headaches and neck and back pain have been increasing for a short while now. They ended up getting so bad that I couldn’t lay down for very long without the pain getting unbearable (this is a normal symptom of a major high pressure headache). So the Thursday before last I was directly admitted to neurosurgery and plans for a shunt was made.

However, the next morning, they came back to me and said I was a candidate for Venus Sinus Stenting, which is much less invasive and could also help me drain csf fluid from my head. So for the next four days they helped manage my pain, prep me for surgery using specific medications, and introduce me to the team that was going to operate on me.

Tuesday late afternoon, the procedure happened on my right side. I honestly can’t remember all the fancy scientific names, but basically they stuck a small metal tube in a vein in my head to hold it more open and to allow more cerebral spinal fluid to be drained.

As of right now, I am home, still recovering, but excited to see how much this can help me in the long run!

#stent #IIH #iihwarrior #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #CheckInWithMe #LifeUpdate #Hospital #hospitalstay #Surgery #Headache #Operation

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Unexpected hospital stay, so much worry!

So I came to the ER thinking I had Covid or pneumonia and they started running all these emergency tests and hooking me up to things and then told me they’d have to keep me a few days. My lungs are full of fluid, there are lymph nodes in my lungs and belly, my heart is thickened and beating way too fast and stressed and they think I either have cancer, lupus, thyroid disease or all 3. One doctor (the ER) is leaning towards cancer while the other (Hospitalist) is leaning towards a lupus flare brought on by recent pneumonia and a thyroid condition complicating the mix. My old primary care suspected lupus for a long time but tests always came back iffy same with my thyroid. Because I have other autoimmune illnesses that usually like to hang out with Lupus and the fact that this is the exact time of year every year for the last few years that I get sick and everything flares in the same way because it’s whan it starts to get warm out.... I’m actually just praying it’s Lipus and that they finally caught it to where they can make the diagnosis so that I have a name for what I’m battling and can have a game plan.

Of course on the other end I have family history of various cancers and my biggest fear is to be told I’m definitely dying. As I also suffer heavily with MDD & CPTSD & OCD, there are more nights than not that I’m wishing to die and yet when someone comes at me with a grim face and says I just might be... all I want to do is live. I want to stop existing and live, give to the world my arts, help others, I wanna adopt through foster care an older child one day, I want to buy my mom a house, I want to see the Florida Keyes again, I want to take the dog for long walks, I want to finally be divorced... I don’t want to die with his name. I don’t want to die. I want to be grateful for the everyday pains and learn to make accommodations so that I’m living and be glad that it’s not the end of my road. #CheckInWithMe #hospitalstay #Lupus #Diabetes #ThyroidDisease #lymphnodes #Cancer #sjogrens #Fibromyaliga #Anxiety #MedicalPtsd #CardiovascularDisease #heart #Support #scared

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#Update #hospitalstay

So many of you were involved in helping me build up the courage to call my doctor and get back to the ER when I needed to. Firstly, I'm very lucky that I was in fact negative for COVID-19, thank god. however this time it took 3 days to get the test back, and on Friday when I went back to the ER a CT scan confirmed I had multiple blood clots in both lungs, so even before the test came back I was essentially treated as a covid positive patient. I was admitted and given a private room in the covid wing, where all the doors are marked "biohazard".

I've stayed in the hospital before.. but this was a completely different experience. Doctors and nurses decked out in full PPE, not being able to have even a single loved one there with you, having no idea what to think or expect. I was so dehydrated they could barely get the blood they needed - which was 18 vials. They came at 4 am and 7 am, I kept a pillow over my face to avoid the light, and had to use the veins of my hand - and even still my blood was apparently simply not flowing, so they had to agitate the vein. While I was there and now here at home I have to give myself injections of a blood thinner (lovenox) twice a day in the stomach. They sent a lot of my blood to the Mayo Clinic for testing - isnt it ironic that it takes a pandemic to figure out what's most likely an autoimmune issue that I've been trying to have evaluated for almost 10 years?

Regardless, finally my covid test came back negative and I was able to come home. FINALLY I was allowed to have that godforsaken IV needle removed from my arm, ya know the one that's there 24/7 for just in case they need to IV you. I had been bleeding from mine, the needle was bent.. ugh damn that IV. My boyfriend and I are solid. He doesnt deal well with this stuff because it makes him afraid, but we talked on the way to the hospital and he checked on me the whole time, and hes been helping take great care of me. I'm very grateful for him, we all know chronic illness can be hard on relationships, especially right now with all this confusion.. I'm also so grateful for all of you. Thank you for caring, thank you for being there for me when I needed it most. Thank you for your support and encouragement and love. It's a good thing I went back when I did even though it wasnt COVID-19, its it's still very serious. I am so grateful for this community 💪💜🥄


One Week Into Hospital rant

#CysticFibrosis #hospitalstay #antibiotics #PiccLine #Breatheeasy.
just wanted to vent a little bit about how my hospital is going (not that anyone cares too much lol). so basically I’ve always been on the same meds for MRSA and Pseudemonous; vancomycin, tobramycin, and ceftazadime, and usually by now I’m feeling a bit better but I don’t??? oh yeah and I also tested positive for mycobacterium in August so they don’t know if that’s what’s causing my symptoms. I’ve just had a super bad wheeze and was coughing up blood over the weekend and ever since then I’ve sounded way way worse. also note that ventolin doesn’t work for me at all so they don’t believe it’s Asthma of any kind. I’m a little worried because I have PFTs tomorrow so I really, really hope they haven’t dropped or I’m going to be spending a few more weeks after next week here.
another thing that bugs me a bit is that I’m on another ward this time because I’m growing mycobacterium so I needed to go into a negative pressure room and I’ve just found a bunch of differences that have bothered me a bit. no one comes to clean my room anymore which is pretty odd because they did everyday when I was on the “less infectious” floor with the MRSA and pseudomonas. also I found that the nurses really aren’t as educated with cf and I always tell them that I take creon right before I eat anything and it’s not like a strict time I must take them, but they don’t really listen to me. since I’ve been here vitals and everything has been good but they still come in every hour to check of oxygen is working when I’m not even on oxygen. so kinda weird and different, also not hating on nurses AT ALL! I’m so grateful and thankful for the hard work they put in and probably wouldn’t be where I am today.
a little off topic but last night somehow all my dressing came off of my picc line? and it was just exposed cause it doesn’t have sutures or anything to keep it from falling out. luckily I realized and woke up and it didn’t fall out but I’m just worried about possible infection as i accidentally touched it when it was dark in the middle of the night and was definitely breathing on it.
anyway that was kinda a long rant but I wanted to let it out :)


Emotional breakdown coming on @ home after newborn NICU stay

After 21 hours of labor I gave birth to the most beautiful baby boy who came a week and a day earlier than my projected due date. Elated and ecstatic and soaring high on the highest of highs and happiness 15 hours later I plummeted into the deepest darkest hell hole after finding out that my baby boy had a congenital esophagus defect that would require immediate surgery at another hospital in the area. That day I was a complete mess of emotions and could barely talk about the reality I was about to face. After a successful surgery and amazing recovery progress each day my little baby boy really made a terrific come back and his heath had been restored to what it would have been without had this major health issue not been present. After 10 days in the NICU and 2 days recovering from child birth I stayed strong and felt amazing about coming home. I spoke to a pregnancy- mom- post partum-specialist therapist 4 times during my stay and my baby's stay to make sure I was checking in on myself felt emotionally sound and had been practicing self-care. Everything felt amazing - I was SUPER excited - and we were discharged yesterday. However tonight I am feeling the weight of the entire process and having emotional moments I feel like I might break down again like I did the day I found out about his condition just because it's all still hitting me now like the after-effects of going through the whole process and seeing him go through procedure after procedure. I thank god and everyone who prayed for us that baby boy pulled through like a champ but the emotional weight of the NICU stay really has me upset the second day of being home as a family. I'm well-aware of post partum depression and have gotten early help with that to do my best to prevent and be aware of any depressed thoughts or emotions. I think my emotions today are validated as we wind down and process everything we went through... but I can't help but wonder why I am not jumping for joy to be home like I was yesterday. Feeling disconnected with my partner today too and on little sleep with newborn feedings and diaper changes all night none of this helps. If anyone can relate or offer advice or any words/thoughts it would be greatly appreciated. #NewBorn #hospitalstay #emotional #Anxiety #Depression #Crying