Nobody noticed I was late to the party

@Appleblossom, you said that you are only just being heard now... do you know of any changes, either from yourself and your parents or with others, that has contributed to this?

Like yourself, I don't have an addiction to “getting a response from others”, and I certainly don't see myself as an attention seeker. I agree that it can be immature and tiring to see these people behave the way they do, and sometimes it's just not acceptable (esp. when people take it too far and it becomes harmful/damaging or dangerous). Although I know it can also be very complicated and the person might actually need genuine help but either aren't sure how to get assistance or are just not being heard.. just a thought..? I'm also the type of person to avoid the “lime light” any way possible, and not very good at accepting compliments (and because I'm very awkward it also means I'm not very graceful). This also makes it hard to create a future from my art, because it feels like I'll never be good enough or my art will never be good enough to share with others.

But the attention thing doesn't bother me.

(@Sahara, I'm hoping that the following provides a bit of insight into the “type” of invisibility and clears some things up)

What does bother me is the behaviour and/or attitude of others that make them think they can treat people however they want. Yes, people have the freedom to like and dislike, and there's no rule that states that everyone has to be chummy or “notice” someone just for the sake of noticing (that is usually linked with attention seeking or narcissist behaviour, or comparing oneself with others)..

I'll give some examples that both my mother and I have had to deal with every day and every time we leave the house, over many years.

1. Simply asking someone a question.. people will very often just flat out ignore us, or if we're in company, they will always direct their answer at someone else (without looking at us or acknowledging that we asked them a question).

2. Supermarkets: people pushing past without a simple “'scuse please”, being literally run over (on purpose and accident but with no apology or looking like they care), pushed out of the way, lots of staff around + just me = no help or service (replace me or my mum with someone else, total change)

3. People playing sport: have had hard balls (basketball, football, etc) hit/kicked at my face (pretty sure it was on purpose). That group kept running after the ball as if I weren't there (note: police were around at the same time, they saw it and did nothing also)

4. Doctors over the years: ignoring obvious problems, dismissing my complaints/ailments, refusing to give me copies of tests or reports, refusing access to my medical history, ignoring the combined concerns of my mother and me

The only instances outside of this house where I haven't been totally invisible include bullying and verbal abuse. Still no better. They are both types of bullying or abuse. Visible or invisible.

So the problem isn't that I'm not getting noticed (waving, pointing at myself, making a scene), it's that I'm not being treated like a human being. I think a lot of it comes down to a large decrease or a complete elimination of empathy in some/most humans. I used to think that it was due to personality differences as well as confidence or self-esteem issues, but that's not it. It's just, people.

I really hope this changes.... in the meantime, my mother and I have been trying to remain positive for one another and joking saying that we're really just invisible magical beings living in a “muggle” world. I own a ring that makes me invisble, and my mother has an invisibility cloak... it's amazing we haven't been approached by wizards or hobbits.

Thank you for your support x

-BB

Hi there, @Sahara

It seems like the real experts are here, in the forums, not in drs offices I have the same hunch and inkling as you (and others who have commented) about my health. I honestly believe there is a large problem that hasn't been discovered or diagnosed by my doctors yet, and it desperately needs to be investigated and followed up.

I've seen 3 GPs in the same practice – the first I had seen for 10+ years, then I switched (for certain reasons) to my current one who I've been seeing for 5+ years. I saw a third in hopes that a different set of eyes or ears or different way of thinking and communicating would produce better results (I also had a good impression of this dr) – but it turns out they were the same. No examination, looked at my file and directed blame on a pre-existing condition (which I've been told over and over, and which is also incorrect). I love the idea of asking them to refer me or recommend another dr but everytime I've brought something up or asked something, I either get ignored or turned down. So no hopes there I'm afraid. My family chemist has been wonderful though – they have seen me and my family for 15+ years and have never failed us. They see me as a person. They see that I am suffering, and that no one is helping me. They also said the same thing that everyone here has been suggesting (and that I knew, myself), that I need to see someone else, and not from my current GP's practice. I've been given the name and address of a new GP – so I'll keep everyone up to date with how that goes.

I've tagged you in a reply I made to Appleblossom, about invisibility (or the type that my mother and I experience). I agree with your thought that people are generally only thinking about themselves and what's happening in their lives, we all do that 🙂 and I totally understand those times where people bump into others, but usually some form of realisation occurs afterwards? Ie. Oops I've run into somebody, or a casual “sorry”, etc.

My mother and I are trying to be firm and push for what we need (we're both supporting each other in our separate health, but our same battles). I personally find it very difficult to speak up and fight for myself. This has to change.

I can relate to your experience of being very ill and feeling alone, and like you said it's an extremely lonely time. Despite all that, you were able to seek help and start looking after you – that is a huge achievement!

How is your dad fairing now? I hope treatment is helping to improve his condition. He is extremely lucky to have you, both as a loving and caring supportive daughter, and as an advocate for his health and wellbeing. You're a knight in shining armour

-BB

Hi @ivana

I'm quickly learning more and more about doctors, their standard methods, the medical system, and the intricacies of the medical system and law sectors. I've had no choice but to do the research and “detective work” myself, because (as you've already mentioned) many doctors don't want to work on “difficult/hard” cases... and it seems like the only criteria for these “too hard” cases are to be >the common cold or flu, must have >1 symptom, and if you continually complain about the same things for years on end. I think many doctors like the simple “open and shut” cases.

However saying that, I do understand that the medical system is strict on time allotment for patients, and doctors have to try and assess and diagnose a problem in 10-15 minutes so they can see as many patients as possible in the one day. Both sides would be feeling frustrated that more cannot physically be done in such a short amount of time, and as a patient you don't always get seen or heard. I agree and think that part of this problem is one that you've already touched on – some doctors are studying medicine for the wrong reasons (and I've met plenty of those). I know others have trained in medicine for the right reasons but a lot of them seem to have “lost their way”.

It's interesting what you said about how these medical students are taught to be so definite regarding illnesses. In my experience with doctors, I certainly believe that a lot seem to think and work this way. With iron deficiency, the first thing I always hear is that I'm a female between [this and this] age who menstruates, and that it's normal. So to them, there's no reason to investigate and can't have any other explanation 😕 even though I know my periods aren't the problem. My anaemia is a long-standing problem with continual relapse despite a good diet and controlled period. I've had an iron injection due to dangerously low iron levels, and then sent on my “merry” way. I'm really hoping to find someone who is willing to investigate this debilitating problem. I hope you don't mind me asking.. how long have you been iron deficient, and how do you manage this health issue?

When I was diagnosed with Severe Complex Sleep Apnoea (300+ central, 20+ obstructive, and 5+ mixed) I was overweight and above 80kgs (partially due to the medication I was on – caused weight gain, which didn't help my condition). I've had a large range of sleep problems since I was 2yo though, and for my case, I only see my weight as part of the issue (as I've lost around 15kgs in 1yr coming off medication, I still have these problems)... I had problems before I put on weight. I agree, some sleep specialists (and some GPs too) believe absolutely that weight is the only cause...but then how do you explain cases like yours – the “overweight” argument doesn't apply, so it has to be something else. I'm always trying to find new articles and information about the conditions I experience, and every new thing that I come across I keep coming back to the conclusion that some illnesses and conditions are extremely personal and individual – something that a lot of drs can't seem to comprehend. However, I'm not a doctor and haven't trained in medicine......

What I find interesting is the last part of my diagnosis.. “Sever complex sleep apnoea (central and obstructive events) associated with severe arterial oxygen desaturations.” I don't want to jump to conclusions, especially since I'm not trained in medicine, but that sounds an awful lot like it's linked or points towards my anaemia (or an undiagnosed problem). With anaemia, the body is deprived of adequate oxygen due to lower than normal haemoglobin or red cells. It's like they're only looking at part of the problem even though it may be right in front of them. They just wanted me to pay the money forward and do as I was told. I decided “nup”... so I'm not using a cpap machine. I'm not using any of their treatment methods – I raised many concerns with the specialists I saw but was pretty much told that I need to get over it. Sleep paralysis, anxiety, sensitive skin, and more..

How long have you been living with your obstructive sleep apnoea @ivana? Do you use a cpap, apap, bipap machine or do you manage your sleep apnoea in a different way?

I'm happy to answer your questions

I'm Australian (as are my parents and grandparents) and decended from German, Irish, and Welsh origin (that I know of). I'm not sure what you mean by “background” could you elaborate please?

I have no idea if I suffer from Chronic Gastritis or similar illness. I've recently had tests for iron levels (at a measly “5”) and then added pathology test for B12 but haven't heard anything from drs. I don't believe I've had tests for methylmalonic acid. I haven't been to an Opthamologist. I've only been to an Optometrist and prescribed glasses (I had daily headaches and suspected it could have something to do with my eyes since a lot of the pain was around my vision. My left eye has to work 3x harder than the other). I had a look at AiWS and that could explain the phenomenon I sometimes experience regarding people getting smaller and further away. At least it gives me a starting point for answers and further research. Thank you 🙂 It's actually funny because up until my mid 20s people thought I had Peter Pan Syndrome. To some degree I think I do, but that seems to change over time and maybe I needed longer to “grow up” (but to be honest, I've never wanted to grow up).

This autoimmune factor came into play when I went in to the docs because of …. da daada daaaaaaa~ iron deficiency. Actually it was a combination of fatigue and lethargy as well as sore painful joints (incl. back, legs, arms, fingers, toes, jaw). I had routine bloods (FBC, iron studies, E/LFT) and it came back with low iron levels, and white cell/inflammatory markers above normal range. I was placed onto iron supps for 3months and followed up with more blood tests. These tests showed little improvement on these supplements and my GP at the time suggested various things like early stages of arthritis or some sort of autoimmune problem. More tests: FBC, CRP, Urate, HLA-B27 which my mother has, ENA, Antinuclear Antibody, RF, antiDNA, CCP-Ab). For years the tests for autoimmune come back Positive and “speckled” but hasn't been taken further due to other results being Negative. My inflammatory markers have been high or above normal for years now. I've been told “blood tests don't come back with a lot of information” and that's the end of the discussion. The report from these tests actually state that results are consistent with either chronic disease or possible acute infective or inflammatory process. A test for ESR has come back nearly 4x over normal range and CRP is right up there too. Another report says I've had mild neutrophilia. Doctors have ordered non-specific tests and it feels like another cop-out. I've had bloods done when I've been ill and when I've been feeling well, and the inflammatory markers don't go down to normal levels. Unsure about recent dsDNA.

I'm prone to renal infections (kidney, bladder, UT) and have had kidney problems since I was 9yo. One kidney is a bit deformed (doesn't look like a normal kidney through ultrasounds) and I usually only get pain in that kidney if I have an infection. No other positive tests I can think of, and I have to make do with what little information docs have allowed me. I do get headaches, sore restless legs, I have general tinnitus (as well as pulsatile tinnitus in one ear), a benign tremor in my hands (probable cause: prior medication), no other infections. Neuropathy.. I'm not really sure. I do experience a lot of those symptoms but I'm not sure if it's linked or classed as that? I've had an MRI of the brain but the results were “unremarkable”.

Gosh I'm sorry this has turned out quite long but thank you for your questions and your interest, and support. Will keep you updated

-BB

You've already done more to help me, @Former-Member, than any doctor has. First, you've cared and read about the problems in my life, and you've offered your support even though we've just met online.

I love your description of “authentic self” and yes it definitely does get changed and chopped up by social media especially when “they” are trying to create new trends.

My other half was actually a cat, but that doesn't really matter – like with you and your dog, I considered her to be my baby girl 🙂 Life seems just a bit more bearable when you have a special little 4-legged friend

-BB

@500bluebirds

I am glad I have been able to give you some support.

Sorry for the mixup about your four legged fur baby, I have also had a cat too. I love animals they make the best companions. I find animals have so much love to give and I love to spoil my Kira. She is 9 year old staffy and she is so beautiful. What is your fur babies name?

How did you go with your dr appointments- I truly hope you are okay BB

Btw I truly I understand how you feel invisible and how much that affects you, I often feel like that too. I have found what as helped me of late is just to dust myself off and to get on with things. It mite help to focus on your abilities/skills and to make a good life for yourself and to learn to value yourself more.

I am so happy you have a wonderful and caring mum in your life and that you support each other. And also the pharmaicist who recommended another GP, he seems like a very caring man and someone you trust.

I hope you are able to get some more information and support around your health and hopefully once your physical health improves so will your mental health.

Thinking of you BB

Hi @500bluebirds

By "background" i was just referring to nationality.

I have really low Ferritin levels but just low Iron levels.I take Iron tablets but i think my situation is milder than yours and mine is caused by inability to absorb due to Autoimmune Atrophic Gastritis.

I'm not sure how long I've actually had Sleep Apnea but it was diagnosed in 2006 via sleep studies.I also was offered CPAP machine but I find it too hard to sleep with so i don't treat it with anything.Most of my "events" were mainly Hypopnea with only a few moments of apnoea so its *relatively* safe but i do have all the typical symptoms of not feeling rested etc....

Did you get/see the report of your brain Mri?

Have you at any point had a throat or skin infection that you are aware of?

You might already be aware but in the absence of malabsorbion conditions or loss of Iron through menstrual bloood or gastro bleeeding,another way to get Iron Deficiency Anemia is through the breakdown of Red Blood Cells (Hemolytic Anemia,Autoimmune Hemolytic Anemia) and also Genetically caused iron deficiency.

That would be worth bringing up to an (open minded) doctor if you havn't already and also asking for a blood smear test.

Can you ask for a referal to a Rheumatologist for further testing (Vasculitis etc)?

Personally though,i think you should choose the Rhematologist carefully and consideer whether you want to focus on telling him purely the joint pain etc symptoms and leave out the brain symptoms as its possible they will also become either overwhelmed or dismissive.

Do you know if you also have the HLA-B27 gene?Thats something i am considering getting tested for too.

Im not sure if your aware that legally your entitled to have a copy of your medical records or you can ask the medical centre to send the to a different G.P.

Hang in there:)

I'm curious about your chronic gastritis @ivana, and I hope you don't mind me asking.. Due to the inability to absorb B12, does that mean that your levels are always low or do these levels fluctuate?

I haven't been shown or given a copy of my MRI brain report. I've only been told that it's unremarkable. I have the actual scans but not the documentation to go along with it.

I don't remember if I've had a throat infection at any point. You've raised another interesting factor regarding a possible skin infection... I don't have any official documentation or been examined by doctors, but for about 6 or 7 years (at least), I've had these small and clustered breakouts on my arms (not what I'd class as acne or adolescent pimples). I have no idea what causes it - originally thought it was an intolerance to gluten or similar, but not sure anymore. It's left some red/purple scarring, and have only noticed this year that my brother has the same thing. It almost covers the complete top part of the arms. I also had a lump cut out of my finger 2 years ago - unfortunately, I still don't know what it was because doctors don't feel the need to inform me about my own health. It was extremely sore to touch and if it were bumped or scraped I would get a lingering needle-stabbing pain in and around the area. It was very solid. I knew it wasn't a wart because I've had a few before and none were like this. I took this issue to my doctor because it was becominig a big daily problem, but they simply said it was a wart and to treat it as such. Well, I put up with that thing for a full year. Went back and showed my GP it was still there and still painful and I needed something done about it. They agreed to cut it out and the only thing I was told was that it was "probably an infection"..

I know I've had a blood smear test before (within the last 2 years) but again I really can't say what the results were. It makes me so angry that they hide this stuff from me. Same with the HLA-B27 gene. I know I've been tested but I don't have the results. I'm now looking at the legal side of things. I've been told by my psychiatrist, chemist, a family member (with experience in the medical system), and I've read myself that I legally have the right to my medical history. I just don't know why they're making it so hard... and I'm scared that if they are denying me this information or leaving important bits out, that they'll do the same with my records. It's ridiculous how they've made me feel so afraid.

The new GP that I saw earlier this week has given me some tests to do (24hr urine, chest xray, and an xray of my legs and feet), and once that's done, we're supposed to go through the results together (so I'll see how that goes). The doc has given me a rough list of the next steps I could take regarding these problems. One is for an endoscopy and colonoscopy, the other is to refer me to a Rheumatologist. I'm going to request they refer me to my mother's rheumatologist because apparently he noticed her problems as soon as she walked in his office. I have seen one before and they'll probably insist I see them, but I'm going to push for my mother's one.

My new GP has asked me to sign a consent form so that they can request my information on my behalf.. I just hope it doesn't make things worse.

Thank you so much for your support xx

Take care

-BB

@500bluebirds,

"My new GP has asked me to sign a consent form so that they can request my information on my behalf.. I just hope it doesn't make things worse." (As you know) sometimes it can.

Another option in future would just be to get the fax number of your new G.P's office (if you trust him and have a good feeling about him) and ask the reception staff from your old doctor/s to fax over (only) your previous test results.

My Ferritin has been consistently low but my B12 functuates.Its mildly decreased but my methylmalonic acid and Homocysteine acid are increased.

If you want these tested you may have to "push" your doctor though as many still dont test beyond B12 even though it has been found that Methylmalonic acid is the more sensitive marker for Vitamin 12 cellular levels.Not to alarm you,but do the marks on your arms look like any of the below photos?

https://www.google.com.au/search?q=petechiae&biw=1290&bih=619&source=lnms&tbm=isch&sa=X&ved=0ahUKEwi6mdSbi8DNAhXLppQKHd8TBBIQ_AUIBigB#imgrc=_

https://www.google.com.au/search?q=purpura&biw=1290&bih=619&source=lnms&tbm=isch&sa=X&sqi=2&ved=0ahUKEwiq5Oarw8DNAhWGopQKHVmMDv8Q_AUIBigB

https://labtestsonline.org/understanding/analytes/mma/tab/test/

http://www.aafp.org/afp/2003/0301/p979.html