♡ New diagnosis: My Immune System Problems! | Amy's Life (28th-29th.05.19)♡
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- Опубликовано: 28 май 2019
- ♡ New diagnosis: My Immune System Problems! (28th-29th.05.19)♡
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Rest In Peace Amy. U will be missed very much. My heart goes out to Tom, your family and friends.
In layman’s terms it means your immune system doesn’t form memories so you never actually build immunity against anything. Your immune system acts as if it’s encountered something new every time you’re exposed to any bacteria or viruses. My best friend has it. She gets treated with plasma infusions here in the United States.
Alexandra Shank I have CVID with low IgG/bad IgG subclasses . I infuse human plasma weekly. It sucks being sick all the time! I hope your friend gets better even though there’s no cure!
I believe (correct me if I’m wrong) this could be solved with a bone marrow transplant
@@breonawarren1507 no, there is no cure for it.
Does that mean stuff like vaccines don´t work either?
@@minniemoo3148 exactly
I don't struggle with any serious physical illnesses, but a couple of complex and severe mental illnesses. And eventhough I can't relate to your physical struggles, seeing you fighting and mastering life is so so helpful ❤ thank you for sharing your journey!
Hi I saw your comment and thought I would recommend The Thrive Programme. Just do some research, it might be something you're interested on or might not be. I don't know where you live and whether it would be available to you but it's been very helpful for me and I've had very bad mental health since I was 11. It's really helped me make sense of everything in my life. Best wishes 🤗
Mental illness can be chronic! My Anorexia caused me to be severely aanemic and in need of a feeding tube because of gastroparesis!
@@NeemaAndGame I'm so sorry to hear that. Sending lots of love 🤗
@@NeemaAndGame sorry I didn't mean to say that mental illnesses can't be chronic. I meant to seperate between physical and mental illnesses but somehow confused it with chronic illnesses. I'll correct it rn
@@filizmely I have bipolar disorder (among other things) and that's 100% chronic and incurable. I know I will have episodes again, just not if they're gonna be bearable or really bad. And I have chronic dysfunction that prevents me from working and leading a "normal" life. Never have. I love watching Amy because it reminds me of my own life, which is 70% illness and the rest happy distraction and sleep. I feel less abnormal watching Amy
when you get blood on something, run it under cold water straight away and it'll help get it out! works for period stains too, as long as you rinse it straight away.
The best way to get out blood stains is to soak them in water with some aspirin.
Hydrogen peroxide can also help!
Cold water and salt 🧂!
Here in 2024 loving Amy’s soothing voice ❤❤❤
"Tell them I love you."
Tom: *avoids eye contact* "I like you." xD
Happy that you have a man that supports you and understands you and loves you the way you are 💕
Yeah she's blessed to have that and the support. I haven't found a man yet that has been supportive of me and my chronic health issues. I'm sure it has to make life so much better
@@lashawnablanton4649 I feel your pain. I would love a guy who was supportive of me as well but NOPE.
@@lashawnablanton4649 I haven't found one either. Makes me think that maybe there's not a guy out there for me...
@@lashawnablanton4649AND Jixie Dye (and others) Be Patient...remember you don't have to "settle"....guys (and gals) who are willing to take on someone that is chronically ill are out there.....trust me.
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There are people out there that do understand and have no problem loving a person with chronic illness. My first DH passed away in 2002, and I met a guy (through a friend) that has been absolutely wonderful with me. When he started talking marriage, I told him "You need to think about this. Signing up to this crazy life of mine can be stressful." To which he shrugged his shoulders and said "Really? If I didn't want to be here, I wouldn't. I have no issues with you being chronically ill and it makes no difference to me really." He also told me that he appreciated the morals and values I was trying to instill in my teenage son at the time and therefore agreed with me that living together wasn't something he was willing to do, and we became engaged and married within the year after our "talk".
Waiting for Mr. Right to come along is worth it. You might have to kiss a few toads before you find the "one" but it is worth the wait. Did I think I was going to have not one but two amazing DH's in my lifetime? No, but it happened!
SimplySarah yes she is ! I’m chronically ill too and would be so grateful for this
My heart is breaking that you have another medical issue. However I am glad they have given you a diagnosis and there is a possibility for treatment for you. I struggle with chronic pain and I understand the pain portion. Although yours is probably much worse. I get the passing out from the pain as well... you are such a beautiful soul and person. I wish you the best health always!
I don’t struggle with any chronic illness but I suffer from anxiety and panic attacks, it’s nothing comparing to what you suffer with. You really make me stronger! Seeing you fighting all the time is so helpful! You still laugh, smile and live! I love you girl! You’re the strongest girl I’ve ever seen! (I never comment on anyone’s videos, but I can’t stop commenting on yours haha)
If you put peroxide on the blood before putting in the wash it will come out good
@my CBD life really? I've done this for years with animal blood and scrubs and never had an issue.
A bar of Dial soap rubbed on the blood works great.
Speaking my language.. I'm a medical technologist... 😊. Girl you are soooo strong... 💪🏻💪🏻
SO PROUD OF YOU. YOU'RE SO STRONG. ILOVEYOUUUU❤❤
My sister is actually diagnosed with, what I’m pretty sure is, the same thing, she is CONSTANTLY sick, and if this is what I think it is, your body’s immune system is struggling to build up enough immunity to fight off infections. She actually had to switch to online schooling due to the amount of times she gets sick throughout the year. She is incredibly fatigued all the time, so that may be why you’re feeling so tired and lethargic lately. There is an option to begin infusions via shots that can help build back up your immune system, but once you start them, you unfortunately can’t stop them. However, since you have extensive experience with medical equipment and such, you may be able to do the infusions yourself! Just some insight💗 Keep being the incredibly powerful and strong individual you are. Much love from the US💐
Emilie Taylor what was her diagnosis if I may ask? I have something that sounds like what you’re describing; Autoimmune Neutropenia (my immune system creates antibodies that attack the neutrophils killing them which causes me to be prone to infections) .
i’m unfortunately not exactly sure of the specific diagnosis. i just know her symptoms. i know it is categorized as an immune deficiency and she has specific track deficiencies. 🙁
i’m also incredibly sorry for what you’ve been dealing with. i know, through watching my family go through it, that these conditions are horrific and very discouraging. stay strong girlfriend. ❤️
Emilie Taylor thank you so much, same to you, both the people with the chronic issues and the families/friends need to stay strong ❤️ it’s not an easy thing to go through but I know we both can get through it
❤️❤️❤️
Love you both! Thank you for bringing awareness to gastroparesis and digestive system paralysis ( which I have).
Please do show the hard times too. If you have never been around another person with EDS there is nothing to relate to. It helps, it really does.
I'm not a professional, just a student, but I believe that IgM is the first immune response your body has when it's infected, it's more generic and can fight lot of different infections. With time your immune system produces IgG in response to that especific infection which means that your body is now able to fight that infection more effectively. So when you first get sick the levels of IgM tend to increase and with time they should reduce and the levels of IgG should increase. So every time you get in contact with some pathogen that you've already been infected with in the past the IgG for that especific dissesse should stop the infection from spreading and you geting sick all over again, in your case your immune system does not produce the IgG properly and that's why you get so often. I don't know how bad it is, but when a person gets older the tendency is that the production of IgM reduces and the production of IgG increses, the logic behind this is that the older one individual gets he should've already had contacted with disease to produce enough IgG to protect his body so the production of generic antibodies such as the IgM should decrease. But anyway, I hope it's not so bad and the treatment is simple. Good luck! (I'm sorry if there's some English errors, it's not my frst language)
Correct!
I Don't have any of your illnesses but I still watch every video you make to support your channels. Tom's "things that make you go hmmm" are the best lol. 💜
I freaking love your channel! I could watch you all day and never get bored.❤️❤️❤️
As a body piercer I have clients pass out weekly, they’re usually out from 10 - 60 seconds.
Does it tend to be from a certain piercing or just random?
@@MissaLVT more or less a vagus nerve stimulation which tends to make you pass out. some people are just more prone to it or other people have certain triggers like needles. needles is a very common one. so TLDR: it can be both.
@@lytamcdonald1184 yes, I know that. I was just wondering if it was completley random or if a certain piercing it tended to happen more to.
Bless your heart, my heart goes you to you!! I have several issues going on and am in pain daily but nothing like you go thru! You are such a special young woman, love, hugs and prayers to you sweetie💗🧚♀️🙏🎀💐🌞🌻‼️
Amy, your Channel is very addicting. I am so glad I ran across your channel. Stay strong we are fighting with for you from Texas💪💕
Rest In Peace Amy . ❤️🙏🏻
I have passed out from severe stomach pain, several times over the years. I have found that forcing myself to hyperventilate and breathe rapidly keeps me from fainting by oxygenating my blood. I force myself to breathe through the pain, because I tend to want to hold my breath ❤️
Stay strong. Sending good vibes. 🥰
Hi Amy my name is Lindsey and low IgG and Hyper IgM fall under the umbrella of Common Variable Immune Deficiency and they are most likely going to start you on IVIG which is once a month immunoglobulin injections. It surprises me too that your doctor didn't check into this sooner as it is very common for people with CVID to also have autoimmune issues as the two go hand in hand. I myself have CVID and have no IgA and IgG subclass 2 defiency and was on sucutaneous immunoglobulin treatments once a week but two years ago my Infectious Disease doctor pulled me off of my Immunoglobulin and I have been fighting to get back on my immunoglobulin. After they start you on this and after about a year of immunoglobulin treatments you will feel less tired. Hope this helps. Love your channel. Keep on keeping on.
Stay strong girl! I know it's discouraging with every new problem. Having an answer doesn't get rid of a problem, but it is empowering.
Tom is a saint and you are a warrior! 💪🏼💪🏼 ❤️❤️
Awww poor girl! My heart goes out to you!!!! Just love you xo
I love your videos! It’s good to know that I’m not alone in this chronic illness journey
I hate seeing you in your 'downs' but I appreciate you sharing them, its life!
The episode of things that make you go mmmh. Are actually interesting 😁 i love that you include them in your video too
I had two or so days of feeling sick & weak. Pain ruling the days. So I can relate to your rubbish days. Just under the comforter and resting. LOVE Tom's "Things that make you go...😍
Yay Bullet Journal
I have ordered mine
So excited to start it
Your nails are always pretty!!💅🏻
The more of your vlogs I watch, the more I like and admire you!! Big hug
Thank you so much for sharing your journey the good, bad, and ugly. I have autoimmune issues my body doesn’t seem to like it self 😊 anyway I have g.p and I have a tendency to pass out from pain and I have stayed out from like a 45 seconds to a minute, but if I can’t gets really bad again I will pass out again. It drives me crazy. I have like no immune system so I will get anything bug that’s going around. I really hope that you get to feeling better, and thank you so much for all you do and bringing awareness !! Thank you
Hey amy u are very strong thank you for sharing ur life with us all and spreading awareness
I don't usually comment on videos, but I love you Amy, and I thought I'd show my support for you ❤️❤️ I have an immune disorder but not as close to as severe as yours. I definitely understand the being sick constantly. I've had a constant cold/flur for the most part of 2019 and was diagnosed with GERD on top of that 8 months ago. Wish you the best of luck ❤️❤️❤️
I love that you talk to your pump like a person
I have low igG and igA levels. It goes along with my common variable immune deficiency (CVID) and methemaglobinanemia. I have been getting IVIG (iv immuno globulin) for about 3 years now. I got a port a Cath so I could get the infusions done at home because they're montly and take about 5 hours to complete. It's to try and help my immune system help fight off some of the infections I get. If you ever wanna talk about that kinda stuff please feel free to! I'd love to hear from you ❤️
I've heard IVIG is very helpful. I was curious how long it takes, because I get fluids 2x a week via my port (port pals!) and one time someone was getting IVIG (how freaking sad is it that I can look at the IV pole and basically figure out what the person is getting based on what the bag/s look like). Anyways, they were there FOREVER, so I wondered how long it took. 5 hours, damn. I guess I'm glad my doctor decided I didn't need IVIG for the time being.
@@rachelel9087 it is Insane but if they give it too fast your body can reject it and you'll have an allergic reaction. I'm just soooooo glad mine is at home now. I spent over 2 years once a month getting ivig in a cancer treatment center and it was quite uncomfortable to be there so long.
Bless your heart, I don’t pass out as such but I go very hot and have to lie down as I feel very sick and then fall asleep very quickly and will sleep between 3-4hours. Feel better soon Sweetie. 🥰🇬🇧
I’ve been on 20 antibiotics in the last year so I understand your pain!! My immune system is so shot. I think I’m going to call my doctor & ask to get tested for that disease you got diagnosed with because I have constant infections. Love you for educating us girlie!! 💖💕💖💕
Thank you for being real. 🥰
Hello Amy😊
I am a biochemistry student from Germany and I can tell you what it means from a theoretical/medical point of view (referring to your new diagnosis):
So basically antibodies structurally consist of a heavy and a light chain. Furthermore they do have a constant and a variable part that is crucial for the specific adaptation to a cargo/ antigen. This variability is maintained through a gene rearrangement of the chains (especially important is the variable part for specific targeting).
Beyond that every B cell (antibody/immunoglobulin producing cell type) usually starts out with the IgM receptor on its surface because at first every B-cell receptor uses the IgM constant chain as a basis. So in order to produce every other antibody iso-type the body needs to be able to undergo a B cell maturing process called "iso-type switching": the constant chain is switched to the specific chain of the antibody iso-type. The IgM-IgG switch is indeed a very crucial switch as the IgG antibody is basically one of the most important antibodies as it primarly acts out the defensive immune response.
So as it seems that this exact process is hampered, it leads to an inefficient and weak adaptive immune response. As your body cannot defend itself properly against specific antigens this results in constant infections.
I hope I could clear things up a bit! Sending lovely greets from the northern half of the globe :p
I’m glad they can finally put a name to what you’ve been going through. xo
This is a good thing!! :)
No, I don’t pass out due to pain, but I do though, or can pass out because I’m dehydrated. Happens a lot to me unfortunately.
Feel better Amy...I love ya~
Sorry about your pain. Best thoughts going out to you both.
I have Fibromyalgia and pass out from pain on occasion, especially when in a flare. It's not fun but usually it's not for too long. That and then there is times with the chronic fatigue that my whole body literally just shuts down, sometimes it feels like passing out but lasts longer. Hope you feel better soon sweet xo
I've fibro too and I feel like I'm constantly tired. I just push through it all the time. Nobody seems to notice. Not even my boyfriend realizes it most of the time. Which I like in a way but I hate it in other ways. Because them, when I get completely exhausted everyone is super surprised. Yesterday happened that I was sound asleep and all of a sudden the nerves on my leg locked in a certain position and it was so fck... painful. I woke up in a haze of pain literally.
@@ambarrose Yeah, I know what you mean. It can be so hard sometimes when no one really understands. But you'vegot to allow yourself to rest as well. If you ever need someone to talk too, feel free to message me. ^_^
Tom made me laugh a lot when he wasn’t letting you talk at the end. Thank you. Also I passed out while falling down the stairs one time. My only time I have.
Sending big hugs amy I hate when your upset keep strong girl you got this 💪💚 I know it’s hard just keep positive your amazing
You're doing amazing, unfortunately I've not got any info on this condition but I'm going through a period of time where there isn't a day where I'm well.
I have no official diagnosis yet, we're looking into behcets, sarcoidosis but I've got severe erythema nodosum on my legs and it's agony, painkillers aren't working very, it's all relentless, mouth sores, inflammation in my mouth, ulcers and more ulcers, fatigue etc.
You said I about being normal unwell or something like that, like most people I felt that today. I sat and cried because living in fatigue and pain can get you down but watching you, helps me to keep going.
I am scared because I've got so many things going on medically, I've two beautiful boys to look after,great hubby but I try so hard to be a normal mum and then, I crash and have to sleep for a day because I've tried so hard to be like everyone else.
Hope this is the answer for you. Hugs xxx
I pass out from pain! I haven't in a while since my pain has gotten better. Love your vlogs ♡ you inspire me to keep making my own chronic illness vlogs.
Blood splatter was like a scene from 'Dexter'! x💜x
I pass out from extreme pain too :( it's not fun. Hope you're okay- sending strength x
I know those are for your joints but they look really cool like rings haha love the nails ! Hope you feel better than you have been ❤️❤️
I have fibromyalgia and severe osteoarthritis and if I stand up to long and then I sit down I get like a weird rush and I nearly pass out but thank god I haven’t yet but they are getting quite frequent now, I love your positive attitude and you try to keep on smiling but obviously it gets to you and you have a bit of a wobble but you pull yourself up and keep carrying on and I admire you a lot for that xx❤️❤️🕉🕉
I Haven't passed out from pain before but I have Primary Sclerosing Cholangitis and Ulcerative Colitis, both cause really severe pain and usually my response to pain is either crying and going really quiet and not being able to move. I'm really glad I found your channel. Obviously we don't have the same medical conditions but I can relate a lot to the pain and nausea you struggle with and my immune system is very poor also. My Dr recently told me I will need a liver transplant within 5 years so I've been thinking about making a youtube channel to document my journey to transplant and to raise awareness about life with Primary Sclerosing Cholangitis but I'm a bit nervous to start sharing so much personal information online, I really admire your courage for doing that. Thank you :)
Poor Amy, she inspires me everyday and when I watch her videos!
I get close to passing out from pain and the same with standing up too quickly... xx
God bless you both. Tom, you are amazing with Amy !
I like to pray for this young girls life
So sorry you been feeling bad lately♥️ love your nail color, I’ve always like dark colors. I want a deep purple color on my toes and nails🤗
I pass out from pain... I'm so happy it's not just me and people in movies haha
Man I hope you get better love your videos you give me and others hope thank you love you
Twice. A very specific abdominal pain and I have no idea what it is yet because it's been a while. But it happened once while someone was talking to me. Well, he was mansplaining my own research to me, and how it was wrong (it wasn't, I promise). And when I came around he was stood over me still talking.
But for me, passing out from pain is so different to my regular passing out. When there's no pain it's just kind of a "fuzzy, I'm going down" kind of feeling, but when it's from pain I seem to fight it more, I get all sweaty, shaky, chills but also overheating, and I actively try to not pass out.
Keep being awesome! :)
Any time I pass out because of pain I wake up in a panic not knowing where I’m at. It’s just really frustrating to not get any relief from pain no matter what I do or what medications I take. Thanks Tom now that song is stuck in my head!!!! LOL
Hope your feeling relief sorry u go through alot I have health problems myself it sucks but I feel u handle your illness so well cant wait see new episodes have good one
I love watching your videos! I’m disabled and there isn’t much to do! I’m the person that loves working. Being disabled is probably the worst for me! I had my gallbladder removed and it took four surgeons 4 hours to get it removed they said I was sick two years. They left my five inch cut open. I have to say that hurt worse than anything I went through until now! I think I’m a wimp compared to you AMY!
I can’t be the only one that sings the “yeah” In the intro 😂
u r so brave and I love you sooooooooooooo much
I’m new to the diagnosis of eds I kind of thought it was it but I’m not a doctor I have just been diagnosed and it’s all new and a shock ...
You and Tom are crazy together it’s like me and my hubby x
Kerry Horrocks welcome to the club
Gordon Wybo it’s a club I didn’t want to join but I knew it deep down but I’m sure none of you want it either no1 deserves suffering how you are ok
Kerry Horrocks groups like this do make it a little easier. It’s nice to know you’re not alone and you may pick up hacks that help you out.
Gordon Wybo that would be helpful I came across amy random after watching chronic illness having rubbish health I just feel like I’m a strain on everyone I always had hobbies I used to dance loved it it takes so much away from you it leaves you lonely I haven’t yet joined any eds groups but I am going to
Feel better soon cariad xxxxx
First let me say that you are a very courageous lady!!! My daughter passes out from pain. She has kidney stones a lot and the pain is unbearable.
She laughs in such a cute way! :D
RIP Amy.
I don't pass out from pain but from even just mild heat
Literally passed out from pain yesterday, had a playlist playing so I had something to focus on, heard everything back but you (Avril Lavigne), passed out, then came round to ghost town (Adam Lambert) didn't even know that a song had played in between 😂😂
Do you do IVIG therapy? I'm a pharmacy tech and we work with infusions IVIG being the main therapy we provide. We work with patients that have immune issues. IVIG does alot to help them.
You and Tom are so cute, I adore you two. I hope you're feeling a bit better beautiful ❤
I have something similar so I feel you, I catch everything
They have me on an antibiotic 3 days a week to try and keep me from getting so many sinus infection
As imino diffincies go it not a terrible one but it is definitely impactful on your health and should be counsidered when talking about treatments
Hey girl from Australia-how do you get along with all the creatures who live on this continent.
I can only imagine how difficult it must be to struggle with this awful illness. Especially that you get reminded of being sick every minute of the day. I have asthma (eight times in the hospital) and bipolar which sucks at times. Hence I totally empathize with your life's challenges and give you a thumbs up!!
Its alright you can get through this its ok
Thomas is amazing and cute! And your beautiful 🙌🏼🙌🏼🙌🏼
I have eds also and have been on ivig for years foe immune problems. One huge unexpected benefit was that it helps with the pots. Hop you feel better soon
Does it?! Hmm.... interesting. I'm going to bring that up at my next doctor appt
Love you both!! xoxoxoxo
I don't know if you have it in Australia but in the UK we have something called first defence, you basically spray it up your nose when you think you feel the first signs of a cold starting. You spray it up to 4 times a day and it stops the cold from developing, it works wonders and has prevented me from getting a cold the last year now. Try and find it, it will really help you, if you sprayed it every day morning and night it would then keep you from getting colds. As I say, it really works for me and my family aswell. Love the vids, you're awsome and you push through everyday with just determination 🤗 big loves
Ugh gurl so sorry for you. I have an immune system problem too. I was born without a pituitary gland and so the hormone that's in charge of my immune system just is NOT there. Consequently I basically pick up everything that is going around. I feel your pain.
I have issues with very low IgA levels, IgA nephropathy, Hashimoto, lupus, mixed connective tissue disease and probably Pots( waiting on cardiologist). I'm on strong immunosuppressants to stop things from getting worst/more damaged( and lots of other medications). Something that's been helping a lot to stop constant infections is an air purifier. I have 1 in each area that I spend a lot of time in. They are the kind that have the UV light like hospitals to kill bacteria, mold, viruses, pollen, dust, etc. Something simple but can have a big impact on thing!
Amy I just love watching your videos and learning things that can help with my chronic illnesses also. Thank You so much you and Tom are Awesome!! I have MCAS also along with Lyme and co-infections. Are you doing a treatment for MCAS that is working? I am down to 2 foods and allergic to most meds. My GI is concerned if I need a feeding tube that the smells that happen will trigger allergic reactions. Have you had any issues with your tube like that? I hope you can find some answers soon on the new diagnosis and I am so happy you found a doctor that you can trust!! That's more than half the battle.🌸☀️
may I ask how were you diagnosed with mcas? and what are your symptoms?
@@crystalr9633
My GI suspected I might have it first years ago but had bad experience and stopped seeing him. I was triggered again severely when I had a cat scan with iodine contrast. Lost all but 2 foods after that. I was later diagnosed by MCAS specialist. I started the Gupta program over a year ago and I now I’m a lot better and eating several new foods.
Oh, I can’t imagine what you’re going through.. You are super brave & to put it out there on RUclips?! You’re so much stronger than I’d like to be...
I’ve had a decade full of surgeries, procedures, tests, scans & MRIs, & even exploratory surgery...
My abdominal muscles split so drs put 4 lrg polypropylene mesh together & permanently sutured then to my fascia & at my pelvic area; unfortunately, the “o-ring” meant to keep the mesh together & in place, broke so I returned several yrs later so drs could remove (scrape away tissue from the “crumbled (like paper) as well as removing tons of spiderweb-like adhesions that grew in & around all of my organs & tissue.. I was told they would very likely re-grow as I was part of the population that was unlucky to have this adhesions grow following abdominal surgery.. they’re a nuisance but I also believe that they are causing some of my existing pain where my intestines are...
And, while enduring problems & pain for over a decade, TakeCare insurance finally referred me to UCLA but by the time I made it fo UCLA, though, damages were already done.
So drs set about tackling ea problem aside fr reconstructing my abdominal wall (twice).. I had a cystocele & rectocele repair twice; they suspended my uterus & bladder neck with the, now, FDA recalled polypropylene mesh is only for my uterus to “fall” within 2 mos of that repair so they performed a partial hysterectomy, removing my uterus & cervix. And, prior to my abdominal wall reconstruction, drs repaired multiple 4-5” areas of hernia repairs..unfortunate time & money spent unnecessarily which shows that sometimes drs don’t always do what’s right for the patient...
Since then, I’ve been diagnosed with vertigo, chronic pain - pelvic floor muscles & nerves completely damaged; chronic nerve pain all around permanently sutured mesh; coccyx (tailbone) vertebrae causing lower back pain that, when it’s a particularly long day for me, lower back pain all around my waist that meet my abdominal pain in front & it’s sometimes an 8 or 9 on a scale of 1 to 10..☹️
Now, in 1 yr, I’ve had numerous ultrasounds & mammograms, spot magnifications that the radiologist has ordered multiple radiological tests bc of 2 significantly & abnormally masses closest to my chest wall.
There’s also a growth that has grown in my throat; initially, reported on a ct scan done at UCLA while recovering fr my last abdominal reconstruction when I lost all sensation to my right side & when the neurological team was dispatched (which, I commend them completely), they originally thought i was having a stroke but ct scan showed normal brain. But, the radiologist clearly state a growth found in my throat which none of my UCLA team of drs spoke to me about...
And, in 2014, I was diagnosed with painful bladder syndrome/interstitial cystitis where the toxins were getting past my bladder lining causing my lining to become red, swollen, inflamed, with ulcers & cysts; but, the pain is incredibly painful. Unfortunately, drs don’t know enough about this problem. There’s not enough known about this disease except it’s for life & will continue to become inflamed occasionally, such as the past few months where even my regular pain medications cannot help it. I finally received the proper prescription; however, the pain continues despite the medication?! They also discovered blood in my urine & was sent for a ct scan. Unfortunately, the same radiologist asked to see my ct scan fr a few yrs ago bc he saw something that he wanted to review before making his final report.
And, finally, my bladder neck suspended by the (now recalled) polypropylene mesh, it’s begun to erode into my bladder. My urologist is trying to keep track of it before the mesh completely perforates my bladder. Either way, after having about a dozen surgeries, I’m definitely not ready for any surgery...even if the masses are cancerous. Surgery is extremely painful & I’ve not had the best of experiences except once or twice at UCLA.
After & while enduring a plethora of problems, I’m in constant pain every day of my life...
Legislators in our nation’s capitol believe that removing opioid pain medications is the best thing to do. Yet, it was less than a decade ago that our pain specialists here (where I live) & at UCLA, pitched the idea of an ideal medication. Prior to that, my pain specialist tried numerous other medications. But with most medications, come side effects & I’m the unlucky one who feels EVERY single side effect & sometimes it’s almost worst than my pain itself... that’s pretty sad.
But the time came when I was told there was nothing else except to try the lowest dose of opioid. So, with reservations, I did. But I was too scared after hearing “addiction” by the general population, so at my next appointment, I was still very unhappy & in pain. I wasn’t taking my medication as prescribed. My pain specialist scolded me & explained the differences between addiction & tolerance. But now, the CDC & all insurance companies have published maximum amounts of medications any one person may receive. Yet, the doses I was prescribed, increased after my 2nd abdominal reconstruction, none of the local pharmacies carried the doses I was prescribed. One pharmacy tried to bring in the doses my dr prescribed but as soon as my dr left the clinic, that pharmacy refused to sell to me despite their company being clearly listed as a pharmacy within my insurance’s network. And I’ve pleaded & explained my situation multiple times, my insurance company refuses to approve my prescriptions knowing full well that none of the 3 pharmacies that carry such medications will either fill my prescription or they will only fill with the lesser dose. They know full well that if my prescriptions were filled properly, I wouldn’t “exceed” their published max amts! It’s a horrible thing to be a chronic pain patient with numerous other diagnoses & have to feel like one must constantly fight with their own insurance company who’s supposed to support & be an advocate for the patient?
Meanwhile, thousands of legitimate chronic pain patients suffer from being turned away. So who’s responsibility is it to help these patients wean off their meds or given something comparable. I don’t see or hear of anyone taking on that role & it appears that our legislators don’t care?
Our drs put us on these medications. Shouldn’t they be the ones to help us wean off of them especially if the insurance companies & legislators are running this very critical & sensitive matter bc they’re dealing with patients with legitimate problems?!
It’s no wonder that when legitimate drs or clinics are shutdown, the only thing left for a patient to do is to try to find their needs on the streets except since these street drugs are not from pharmacies, patients don’t know what they’re ingesting, some are a lethal combination of drugs laced with something life threatening. What our legislators are doing is not working.
So I gave my meds a try & I was able to work at my full time job, which then became a modified schedule yet working 5 positions simultaneously & without any raise or compensation & as soon as I returned fr surgery, while recovering on approved medical leave, my employer of 14 yrs laid me off...I lost everything...my insurance, my life insurance, my & my husband’s supplemental life insurance..I lost everything after working loyally for 14 yrs...
I’m very sorry my post is so long.
But I do watch your videos & wonder then see when you’re feeling horrible & in a lot of pain.. you’re so fortunate that where you live, the healthcare is offered to everyone within the country! Seeing countries like yours, Japan, New Zealand, etc. appears to be working & working pretty well?
I wish I lived in one of your country or New Zealand? It’s certainly worth all the physical pain & problems, I believe.
But, yes, my pain can reach an 8/9 with the average being a 5. I’m unable to work. Social Security disapproved my initial disability application bc I can still use my arms. But my arms are useless if I cannot sit, stand, walk, bend, lift or even do a simple basic life task such as showering or wiping my butt! 😔
Sorry, again, that this is so long.
Thank you for sharing your story with us. It gives many of us hope that things just might get better at some point? 🙏🏻
I wish you many better days ahead!
I get horrible pains when I'm on my period and it causes me to pass out sometimes. That's the only thing that's done it for me so far.
Everytime you guys say things that make you go hmmm it reminds me of an old UK show called braniac they had the same segment 😅
I have major panic attacks when it come to needles and Ivs and blood work so I get what you are talking about
I regularly pass out from pain, and that lasts longer than anything else. I don't panic when I come to because it's more frequent than any other type of passing out I do. Luckily my husband knows, and since he takes care of me he knows how to handle it.
I pass out from pain too it’s not very often because I’m constantly in pain. But when it does It usually lasts for about 1-3 mins from what I have been told.
I’m sorry to hear you’ve got another diagnosis to add to your list, but maybe putting a name to it will allow for better care going forward. And hopefully that helps lessens infections and sickness in general. Hope you hit that baseline or just start feeling so much better very very soon!!!
Good day I get it being chronically going for more tests ty for your Video
I LOVE YOU BEAUTIFUL!!!!
About 6 year ago I was told I have an undiagnosed autoimmune disease. They are monitoring me twice a year to see if I have any changes. The check my ana, ss-b, ss-a, Ron and Smith antibodies to see if I develop sjorgens or lupus. I also have to be check regularly for my thyroid. I have an overactive thyroid. So all that gives a whole host of issues. But I concur and move on. Living life to the fullest.
Hi, I have CVID (Common Variable Immunodeficiency) which I think is similar to what you're describing (I have low igG and igA). Treatment involves either IVIG (intravenous immunoglobulin which is probably what you're most likely to receive) or SCIG (subcutaneous immunoglobulin). SCIG I do once a week by myself and it goes into the fat of the thigh/stomach. IVIG is once a month and for a couple of hours but you have to go into hospital for it and it takes awhile - this didn't keep me stable and I had a lot of side effects with it. I know this is not exactly the same but the treatment might be similar:) hope this helps x
Love and Blessings are with you both always ❤️❤️
By jingo it was cold here in NSW this Morning
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