#alhamdulillah Here I am... And yes I am still in the hospital after having a GJ Tube Placement which is a feeding tube for a health issue called #gastroparesis I have lost so much weight that I am in starvation Dr’s say so I was given a feeding tube This entire procedure was suppose to take a week but as I always say nothing is ever easy for the #lupie and #spoonie and all those whom suffer with #autoimmunedisease such as #lupus Now a month later here I am still in the hospital and just when I thought I was going home I seem to be having another issue and a problem with this tube I’m beginning to regret putting it in and I have asked them to take it out but they said that until it’s healed (which takes about 6 weeks #subhanaallah ) they cannot remove it safely they want to remedy this new situation with a second tube placement ARE THEY CRAZY OR WHAT? They want me to get a second hole in my stomach like this one isn’t enough and it’s either that or TPN feeds (which comes with a risk of infection for someone fighting lupus after one week of TPN feeds) for the remaining 2 weeks until it’s healed and then they want to remove it and put in a new one 😳 I can be honest with all of my #igfamily My #spooniecommunity and everyone who follows me I am starting to feel like I shouldn’t have ever let them put it in... I’m reaching out for some information Does anyone who follows me know anyone else who has one of these tubes that can give me some tips or information about how they are doing with their GJ Tubes?
Remember the cat fountain that I was going to build a few posts ago? This is it! It’s been up for a few days and so far my oldest and my youngest love it! My middle baby doesn’t get it😂• I was going over some of what I said in my last post and I 100% stand by it but I want to make sure everyone knows that I wasn’t singling anyone out as a “bad” spoonie• Honestly I think we fail to kind of...grow up, for lack of a better term. Like I’m sorry, but you’re not my hero because you went grocery shopping. You do not deserve praise for that- you are not five. I think that this happens a lot because we tend to have to rely on others a lot and it makes it easier to rely on them for everything and expect them to do everything• This is not to say that you should be able to do everything an abled person does. You may also need more accommodations than an abled person. But don’t let your disability stop you from living an independent life where you do other things than just be sick• This is just an ongoing thought I’ve been having about the community as a whole and who I want to be as a chronically ill person. If you like what I’m saying I recommend checking out the #sickpeopledoingthings tag and @chronicmotivation for lots of incredible content. Becky gives so much advice on stuff like this and is a boss ass bitch!• I love you guys and I appreciate each of you!💜
Sunday activities plans when you live with #lupus ... P. S. I’d like to let you know that through my website you can get a FREE bottle of a live high potency probiotic (50 billion good bacteria) and a FREE container of a premium quality protein. They provide nutrients that are often lacking in people with lupus and #autoimmune disorders. It’s truly free, no strings attached. You can get it via my website http://lupusselfhelp.com/free or just click the link in my instagram profile @lupusselfhelp <<<===clickable link
Stolen with love from @ninajean 💜 go follow her- she’s awesome! • So this is a bit of a difficult subject to broach considering the current atmosphere of the chronic illness community but after seeing my lovely friend’s post, I wanted to say something as well. •I am not an inspiration. I am simply a sick person living my life. That’s all ANY of us are. I am not “inspirational” because I went to Wal-Mart yesterday. I am not a “warrior” because I cleaned my house- I actually hate that word now. I’ve made accommodations to be able to live my life with chronic illness. That’s not praise-worthy. •My illness is not glamorous. I don’t lie around doing at home spa treatments. I don’t take lavish vacations where my illness magically disappears. I don’t go shopping everyday. •You’ll never catch me on Instagram during 10/10 pain- because I’d be unconscious. I won’t ever do this 💪 or this 👍. I won’t complain and bash my healthcare providers.
I’m not the “popular Instagram spoonie” that gets 20,000 followers. That’s cool with me if it means I keep my dignity. I’m not going to follow the pattern acting like I’m a hero for living, because I’m not. This is my life. I’m just a normal person.
Lupus DLE patients in Denmark can be part of a great patient engagement. Share your patient experience and opinion and get paid while doing us all a favor. Contact firstname.lastname@example.org if interested
I Danmark kan vi nu tilbyde en unik patient inddragelsens mulighed for Lupus DLE (discoid) patienter som bor i Danmark. Del din patient viden og indsigter og tjen lidt på det - mens du gør os alle en tjeneste. Kontakt email@example.com hvis interesseret eller har spørgsmål.
Today’s ruling affects me personally. My coverage through the ACA (at $425/month) starts January 1st. If California and 16 other states were not willing, able, and excited to appeal this ruling that the ACA is “unconstitutional”, I could easily die. You see, I’ve been without insurance since about April, so eight months. In those eight months I’ve not seen a rheumatologist for my lupus, not gotten a surgery that four doctors (including two surgeons) confirm I need, and I’ve gotten diagnosed with another illness, this time a rare one- and I can’t afford to see a specialist for it. Do you know how I’m surviving? My father. But 95% of people in my position don’t have that resource. I’m counting on this appeal...on the Democrats I know and love, to fight the uncaring, heartless Republicans on this. I’m counting on the Supreme Court, one I have very little faith in. If you’ve got a pre existing condition, if you’re disabled, if you’re reading this post, and you’re a Republican- ask yourself if you’re proud of the utter fear your party is causing. Are you PROUD of what Trump is doing? Are you PROUD you or I could lose our healthcare? Think on it, and get back to me.
Pneumonia life😅 Hopefully getting Rocephin when I see the doctor on Monday because I JUST finished a course of Cipro for my UTI. Rocephin shots suck though tbh. It’s better than feeling like your lungs are made of plastic bags though! Today was okay, but I keep forgetting to eat due to my IH med. It’s worth it though, because I was able to go to Walmart, put the groceries up, and clean! I feel mega proud💁♀️
"Эпоха колонизации Египта"
В Египте современном курортном нам нравится многое: климат, разнообразные обитатели Красного Моря, недорогие услуги, изобилие фруктов, Задорнов, помню, писал, что египтяне - это то, что ему не нравится в Египте.
Берберы, бедуины, арабы(в Шарме работают люди со всего Египта) дружелюбны, хорошо владеют несколькими иностранными языками, зачастую освоенными в процессе работы с туристами, умеют продавать свои товары и услуги.
Повышенный интерес к европейским женщинам и славянкам и местами вульгарное проявление внимания откровенно бесит! Не все египтяне таковы. Только необразованные и невоспитанные сельские жители. Зачастую они и работают в отелях.
Стоит учитывать, что вы находитесь в мусульманской стране, где женщины традиционно носят консервативную одежду и с рождения воспитаны в скромности. Если приезжие женщины надевают открытую одежду за пределами отеля и к тому же вызывающе себя ведут, то тем самым невольно привлекают к себе нежелательное внимание.
На страже туристов стоят посты Туристической Полиции, турист неприкосновенен и его интересы блюдутся тщательно.
В эту свою поездку я познакомилась с двумя египетскими женщинами, одна из них из Александрии, вторая из Каира. С ними я продолжаею общение в соцсетях, сами себе Couch Serfing😀, а мы с мужем думаем о Египте туристическом, дворцах и музеях Каира, Гизе, Белой Пустыне, Луксоре, Александрии, Долине Нила. Прямые рейсы из Москвы в Каир открыли уже весной.
Я до сих пор не видела Египта. Только Красное Море
Photo by @milaiseeva
(Regarding pain) “DON’T FUCKING ACKNOWLEDGE IT, SARA. IT WILL ONLY STOP YOU IF YOU LET IT.” -Pete @futurefitnesspro screaming in my ear many times when he was coaching me through one of his rigorous training sessions. I was a college basketball player and a skinny little freshman when I met Pete, he was our strength & conditioning coach. 🏀💪 I was the gym rat who would hang around and ask Pete a million nerdy questions after 🤓 so finally one day he asked me if I wanted to do an internship at his gym that summer. 😳🙌🤗 I said yes and became obsessed with training and learning everything I could from him, I WANTED HIS JOB. He also coached me as an athlete, he turned me from a skinny freshman into a machine. He’s the reason I earned a starting position my soph, junior, and senior years. Heading into my senior season I was as strong and well conditioned as I had ever been thanks to Pete. I was co-captain, second leading scorer on the team, and our team was preseason picked as the #1 seed in our conference that year. NOTHING COULD STOP ME. Ohhh except maybe a Lupus diagnosis 😑😑😑 NOPE, definitely hadn’t considered that, AAAND THEN BOOM 💥⚡️🌪 LUPUS HIT 🙍🏻♀️🥊😷🤒🤢🤧🤮🤕😵😴 I was passing off a lot of symptoms as the rigorous Div. I training schedule taking a toll on my body but then one day I got sick and never got better. 😷 A few months later I was diagnosed with Lupus at the age of 20, 6 months before my senior 🏀 season.
Enter Pete’s voice in my ear. He knew this was serious. He would always tell me to take care of myself and rest more than I think I should when I’m sick, but “once you step onto that court DON’T FUCKING ACKNOWLEDGE IT, SARA. IT WILL ONLY STOP YOU IF YOU LET IT.” He’s why I could separate myself from it mentally when I needed to and get done what I needed to get done despite having Lupus.
So maybe this whole time Pete wasn’t just making me tough for basketball, maybe unbeknownst to both of us he was preparing me and instilling in me the resiliency I would need for my lifelong battle with Lupus. He got me through that final bball season and his voice has gotten me through the last 15 years that I’ve battled this brutal disease. 💜
Realizing more & more the importance of being open & accepting of the challenges that come with living with a chronic illness. We used to be very secretive about what we were dealing with - not wanting to be perceived or looked upon a certain way, but it’s a hard path to walk alone. Connecting with others who are dealing with their own struggles be it similar or different has given us a greater strength. We’re proud of our journey & of what we’ve had to overcome thus far. Love to all our spoonies tonight 🥄 ❤️✨
Time is passing by but are there any improvements in #lupus diagnosis and care? Many people still struggle to get a proper diagnosis for years because lupus can affect everybody differently and there is no definitive test for lupus. Some symptoms are very debilitating and profoundly affect #lupies lives but they are difficult to treat and treatment options are limited. Do you sometimes feel like you are alone in this battle against lupus? P. S. I’d like to let you know that through my website you can get a FREE bottle of a live high potency probiotic (50 billion good bacteria) and a FREE container of a premium quality protein. They provide nutrients that are often lacking in people with lupus and #autoimmunedisease . It’s truly free, no strings attached. You can get it via my website http://lupusselfhelp.com/free or just click the link in my instagram profile @lupusselfhelp <<<===clickable link
My 2018 summed up 🥊
Here’s what the past year with Lupus looked like for me... 6 hospitalizations
40 hours of chemotherapy infusions
1 kidney biopsy
1 upper endoscopy
2 chest x-rays
4 CT Scans
3 24 hour urine tests
37 urine spot tests
26 blood draws
4 continuous glucose monitors worn
29 doctor appointments
4 new drug treatments introduced, only 1 out of 4 was effective (chemotherapy)
New 2018 Diagnoses:
Acute Kidney Failure (from Lupus Nephritis)
Primary Adrenal Insufficiency (Addison’s disease)
Anemia (previous iron deficiency issue that resurfaced)
My Lupus Organ Involvement:
Kidneys (Class IV Lupus Nephritis)
Skin (rashes, scarring, thinning from Prednisone)
Liver (caused by Lupus drugs)
Pancreas (still being diagnosed)
Brain (daily cognitive dysfunction)
Pills taken per day: 9-10
Days per week spent mostly in bed: 4-5
Number of days spent while on corticosteroids (Prednisone or Hydrocortisone): 365
Number of days spent while on chemotherapy: 268
The number of times I whisper “what the fuck” to myself each day: COUNTLESS
Sooooo I’ve had some better years lol 2018 was quite the doozy and was my absolutely worst in terms of my health/ my disease activity. It was a lot of pain and crushing defeats but you know what else happened despite all that suffering? I found her. ❤️ @amyvforme walked into my life just when I needed her the most. And I’d suffer through a list 10x longer than the one above if I knew she was waiting for me at the end of it. 😍
I hope all of you Lupus Warriors have someone in your life who makes you want to keep going because this disease is too difficult to face alone. If you do feel all alone please know that you’re welcome to DM myself or Amy over at @caregiver_corner. (Just FYI I’m running about a week or more behind on my DMs because my inbox was flooded with love over the weekend when I was in the hospital ☺️, so please be patient in waiting for a response). I hope ya’ll had a better 2018 than me and I hope better health days await us all!! 🦋💜 #lupusadvocate#lupusawareness#yearinreview
Had to get a new CGM (Continuous Glucose Monitor) installed today because the one I’ve been wearing for the last 2 weeks had a malfunction. Due to that malfunction it only recorded 1 out of the 14 days so unfortunately we have to redo it for another 2 weeks. This also means we will have to postpone my hospital admittance (that was supposed to happen tomorrow) for the overnight insulinoma fasting test until after the holidays.
I’m honestly relieved it isn’t happening tomorrow because I’m still recovering from being in the hospital this past weekend. It hit me hard and I haven’t been right since I got home. The thought of being admitted again tomorrow for a 24 hour fast seems unfathomable. Although the CGM malfunction was inconvenient and annoying I’m grateful it has allowed me more time to recover and prepare for another hospital stay. 🙏🏥🛌 I was having a lot of lightheadedness and nausea today so my girlfriend @amyvforme drove me to the Endocrinologist. I’m very lucky to have a girlfriend like Amy who always wants to help and wants to listen and remember what questions I need to ask when I’m in these doctor appointments. The brain fog and low blood sugar issues make it very challenging for me to retain all the info and instructions my docs tell me. It helps so much to have her there 😍🦋💜 Thank you Amy 😘❤️ @caregiver_corner
These next two weeks are going to be so stressful😅 Tomorrow I’m going to the optometrist for the first time since 2012 because hashtag I’m poor and used my monthly contacts longer than a month and now I don’t have any and I’m blind as a bat🦇! I’m actually super excited to go since I can’t really see that well. Then on Monday I have to see the doctor (for the thousandth time) to have him fill out some paperwork for me and to get a five day course of Rocephin/Ceftriaxone because I’ve got a UTI. I’m on Cipro but I’m almost out (tomorrow morning’s my last pill) and I’m still having to take Pyridium. Then on Friday, I’ve got something going on I’m not comfortable sharing publicly but if we’re close/have talked a bit/whatever, you can DM and ask me what’s going on because it could be life changing. I hope it is as I’ve been working towards it for almost two years! Anyway, very stressful! But today I’m just relaxing, practicing self care, and thanking God that things are going okay. I’m also super thankful for my husband for being willing to take me to all these places💜 How are y’all doing? I hope you’re well and happy! Sending so much love and happiness your way!💜
Spending a lot of tome in these buildings before the holidays, trying to squeeze in all the necessary appointments before the new year. At the hospital & waiting for my cardiologist, but I can’t complain of that view 🏥
The flu has definitely had me down and out this week but you know what cheers me back up? Registration for the 2019 Orlando Walk To End Lupus Now is open! 🤩
I can’t wait for the day when we can destroy this disease and everything is represents. I dream of the day when no person has to know of the physical and mental struggles that come with a diagnosis. 💜
Do you want to help me achieve my dream? Visit the link in my bio! You can donate to help us obliterate our goal this year. Or you can sign up to walk yourself. Heck, you can even join the Marching Mermaids! Y’all rock! 🧜🏻♀️🧜🏻♀️