Be Honest. Do You Still Enjoy Life?

I've had chronic blepharitis (MGD) since I was 16. It took me a year or two to figure out how to keep it under control. It still flairs up every now and then no matter how well I take care of myself. It also doesn't help that I live in Southern California which is full of Eucalyptus trees, which I am highly allergic to. Probably doesn't help the asthma issue either.

I also smoked from age 19 until around 27. Started smoking again last year in January when my 10 year relationship ended. Then I got the flu in February and never recovered from the cough. I eventually went to a pulmonologist several months later.

I get chest pains, but I just think it's my intercostal muscles between my ribs getting sore from time to time. I had a chest x-ray and a spirometer test back in June last year. Every looked fine I guess and I was given prednisone and some other drugs for a couple weeks then switched to Singulair and Trelegy Ellipta.

I have a pretty decent PPO insurance from my employer so I get to pick and choose where I want to go. I usually try and find the best doctors in my area, but it is usually anywhere from a 2 week to 3 month wait for a specialist. I also didn't have any trouble getting an x-ray at the hospital. Just had to wear a mask and have my temperature checked.

They won't get you an appointment with chest pain and swollen legs? That sounds serious to me =(

My tinnitus is the same day in and day out. I moved around Christmas time and I think it may have increased in volume a bit around that time, but I really can't tell anymore unless it changes dramatically. It's super exhausting and having to constantly protect my ears makes me feel incredibly trapped.

Do you deal with yours pretty well? Do you think that stent is going to fix it? I'd honestly go into debt millions of dollars if I knew I could get rid of this.

 

@serendipity1996

I’m so pleased that your family has been able benefit from the NHS. That’s awesome! When it works, it is great - but it’s failing miserably. The NHS is underfunded, overcrowded, understaffed etc.

It took 7 years to get me to convince them I needed a knee operation. I finally got it done when a rare

good doctor randomly asked why I had a massive lump on my knee. All the doctors prior to that said there was nothing wrong, and stuck me on pain meds. I was 26 by the time I had it done, and could hardly walk. They ended up removing the tendon from the front of the knee cap, because some bone spurs had grown through it and were splitting it apart nice!

Oh and when I finally went in for an MRI on the knee, the doctor had written the wrong leg down by mistake, and when the nurse said, “it’s your right knee”, to which I said, “no! It’s my left!” He wouldn’t believe me, and tried to tell me it was the right knee! I lost my absolute sh*t with them. I stopped the whole clinic and frog marched them to a phone, to call my doctor to get it changed, because they told me that if I wanted the other leg scanned, I would have to go back on the 6 month waiting list!!

It also took them 8 years to believe that I wasn’t mentally ill, in fact I have a hormonal imbalance that sends me f#*king nuts every time I have a period. I tried to tell them my moods were linked to my cycle, let they wouldn’t listen. Instead they stuck me on schizophrenia medication. Until one day, I demanded to see a gynecologist who ran some tests, and told me that my body wasn’t releasing a certain hormone, and that’s the reason I can’t function during my period. I’ve been put through a chemical menopause twice, and it transformed my life! However, it took years and years of fighting, just to be listened to. And it shouldn’t have been like that.

Now with my head, I have been waiting for a stent for 3 years, and still, the scan hasn’t been done in order for them to do the two operations I need. And I’m not sure it ever will be. And it’s taken an absolute battle to even be believed there’s a blockage in my sigmoid sinus. During this fight, I’ve been told that’s there’s nothing that they will possibly do for me (that came from a GP) I’ve been laughed at (by an ent specialist) and when I told him I can stop the sound (PT) by pressing on my neck, he actually respond - “well there’s your solution then”.... f#*king absolute c#*t!! I’ve been told by a neurologist that all my problems are because I’m fat! Like ergh really!? Also, every consultant who I’ve seen, has undermined the last. But now I’ve been told that actually I have quite a lot wrong: flattening of the transverse sinuses, venous outflow blockage, ICP, bone dehiscence. But that’s funny, because when they first ran my tests, they said I was absolutely fine, and nothing was wrong. However, after fighting and demanding that they look again - it suddenly concludes to the diagnosis above... don’t think they bothered to look properly somehow.

My partner can’t believe how unjustly I’ve been treated. The absolute utter misery and stress it has caused me - let alone time wasted fighting, and writing letters in the hope someone would hear my plea for help.

And now for a year I’ve had chronic chest pains and my breathing is dreadful - and guess what!? I phoned my doctors and said I can’t breath properly - what can I do, because I’m taking my inhaler and it’s not helping - and she said, “well you’re on one of the strongest inhalers we have, and steroids, so there’s nothing else we can do. Sorry”. Then she said goodbye and put the phone down.

Anyway, a month later and I go into hospital because I really felt awful and my lung burnt, and it turned out I had a nasty virus that was attacking my lung. They gave me antibiotics IV and loads more steroids to bring the inflammation down. So yup, there was something wrong with my lung, and I’m still not better, yet I can’t even get an appointment to see a doctor, or have some bloods, or scan etc. I’m worried the damage is permanent.

The only thing the NHS has done for me, is given me tinnitus, by sticking me on antibiotics for 6 months. Whoop Whoop! Thanks guys!

Actually, after writing that all down, I can now conclude, that the NHS is perhaps the biggest load of sh*t boll#cks out there! And if the government can’t fix it, then f#*king privatise the c*#nt!

But like I mentioned at the beginning of this post, glad they done their actual job, and have helped your family. Nice to know they can sometimes.

It’s all a load of boll#cks. Life’s a bitch. F#*k everything. Good night.

Steph <3

 

As far as healthcare in the United States...

I'm on the fence about it. I don't like the idea of having to depend on a primary doctor to refer me to specialists. I also don't want to have to depend on a doctor and health insurance company deciding what tests and procedures I'm eligible for. I like to be able to choose my own doctors, go to specialists and requests things on my own. I like getting second opinions.

Will universal health care afford me those options? If not, I don't want it.

Now, to not be selfish for a moment, I think everyone deserves care, and it shouldn't put them into thousands of dollars of debt. I had to get stitches in my finger a couple years ago, and even with a really good PPO insurance plan I had to pay almost $2,000... just for a couple of stitches. That was after insurance paid 80%.

I was also unemployed for a while a couple years ago and had to enroll in one of the marketplace health insurance plans. That cost me about $400 a month and it wasn't even as good as the plan I had from my previous employer, which was free.

As far as wait times here, it really depends on how popular the doctor is. When I first moved to Los Angeles back in 2008, I found a great internist in Santa Monica. He was super intelligent, amazing bedside manner, and was always well-versed in all the latest procedures and what-not. I could get in at a moment's notice. Fast-forward a few years later and it started to become difficult to get in to see him. He'd be booked for 3 months out. I'd visit his office maybe 3 or 4 times a year and I'd maybe see him once and his PA's the rest of the time. Now you can't even see him unless you pay a membership fee on top of your insurance and copay. I think it starts at about $3000 a year just for the ability to make appointments. I'm sure he has wealthy clients paying hundreds of thousands for him to visit them at their homes with no wait times.

 

I live in New York and while I may not be able to see a particular individual, like Dr. Scott, a specific hypothetical neurologist, I can definitely see most kinds of doctors within a few days, who work at the same practice as my go-to medical staff, so all of my medical data is linked. If someone can't see a doctor quickly in the US, I suspect this is linked to the resources of the overarching medical practice one visits.

Recently I also used Plush, a telemedicine app, to get a same day prescription for Prednisone after an acoustic trauma. I'm not advertising for them, but it was fine and saved me the trouble of driving which is difficult for me. Doctors there seemed more than willing to accommodate my requests, likely because it is an app and they want to garner as many positive reviews as possible.

Not that seeing doctors has done me much good, to the contrary actually, an ENT set my tinnitus off.

 

Hell no.

 

No, I don't. I have no happiness and no joy. I see no future for myself apart from one of poor mental health and merely existing.

 

The only people who love Obamacare are those who get it for free, or have never been on it. If these armchair Obamacare lovers ever end up with it, they're in for a rude awakening as to the reality of what it's like.

 

@Dirtworks @Steph1710

Fellow asthma sufferers unite. I had it bad as a kid, got better as an adult. Ever since my chemical incident it's been bad again, and every single doctor has attributed this to anxiety and it makes me want to scream. I had a few tests that came back normal, but then my hyperacusis began getting so bad I tapped out before I could get the bronchoscopy done. I know what my lungs used to feel like, I know what they feel like now. I know what inhaling resin particles and other stuff does to your lungs. But that isn't evidence of course, after all it's "all in my head". No inhalers help me either. Exercise is tough as is since I don't do it as often thanks to H flare ups but goddamn I can barely do anything for more than a minute without feeling like I'm about to keel over. Unfortunately I wasn't lucky enough to have the "something was actually wrong" thing happen, so it will forever remain a mystery until I die of lung cancer in a few decades *knock on wood*.

Reading all these stories from incompetent doctors infuriates me. Especially since they are tangible issues outside of tinnitus. I've recently reconnected with a few friends who gave me their fair share of medical incompetence horror stories. I would love to print those out and hand them out as brochures to the next person who says I need to "trust MDs".

But we're a bunch of angry people on the internet. What the hell do we know.

 

Well I can clearly say that My QoL went down roughly by 70-80% since developing my tinnitus 10 months ago. I often see photos of the time before it entered my life and I think "Look how happy you are... Nothing to bother about". Now I go to sleep with the fear of waking up to a spike the next day...

It's like my entire life is solely controlled by my tinnitus. Loud day? Bad mood. Quiet day? Happiest person on Earth.

Times I think about my tinnitus? 24/7, even on quiet days ("what should I do if tomorrow I get a loud day?").

Science consequently failing to find a "cure" does not make it better. When I first heard of Lenire, I was having a bit hope. Then I read in this forum that most of the people didn't get any effect from it + it costs a shitload of money. Some people even got a worse tinnitus from it...

Tinnitus is like fighting an uphill battle. The longer and harder you fight the more exhausting it gets. The CONSTANT focus of "not focusing" is so extremely hard and habituation feels like unreachable.

I once told my wife "I'd rather have cancer than have tinnitus" during a very intense spike (something I still regret saying). But that only shows how desperate it makes us.

But to answer your question: No, I clearly don't enjoy life anymore. How could I?

 

A no from me as well I totally relate to @Zaimon. Although I stay cautiously hopeful that this may change after some time. I'm 9 months in, which is rather early on from what I've gathered so far. I almost offed myself a few months ago (particularly after Clonazepam withdrawal), and now I rarely think about it in a serious way. It took me around 8 months to get to that point.

 

I feel all of you guys. This is torture. The worst thing is the fear of it getting worse. It’s debilitating. Have hope guys. FX-322 is on the horizon. It’s 2021. Technology is advancing faster than ever. The only thing keeping me going is hope. Hope is a very powerful thing.

 

I hate this as well. Basically, whether I can be happy on a given day depends largely on what my tinnitus decides to do that day.

 

Or when you get something new and disturbing blasting out at random that's beyond your control and you aren't used to and it's LOUD, life just... stops.

And to expect that.

 

Sigh, the other day I thought I'd rather lose 1 leg than have tinnitus. Unproductive thinking I know. But loud sound is actually a form of torture and having this sound inside my head. - I'd say I've lost 70% of my quality of life.

Maybe when the lockdown is lifted and I can be in a noisy office during the week it will be a better distraction. But I'm exhaused constantly running from the tinnitus or trying to ignore what is obviously there.

 

I'm sure that'll help. Waking up, immediately dashing to the gym, then to the office, then to some social event until I was so exhausted that I just crashed out was how I coped for a long time. Really miss this.

 

This absolutely infuriates me.

I know exactly how you feel.

Actually, I've just created a photo album I'm taking to the doctors - if I can demand a face-to-face appointment with them - to show them how I used to be a year ago before my lungs decided to pack up.

The photos show me swimming in & outside, climbing mountains, caving, abseiling, skiing, hiking, roller-skating, playing badminton, surfing, cycling, rowing etc.

I have always been the most active person. But now, no exaggeration, I can't walk 5 minutes without my lungs feeling like they want to burst through my rib cage.

I honestly don't know what to do. I'm an absolute mess, and no doctor will even examine me. It's been a year now.

Yesterday I bent over, and fluid poured out my nose. :-/ my right tonsil is also huge, and like I mentioned in a post above - my legs are swelling everyday.

I'm not a person to hyper focus on things. I just try to get on with it. In fact, I make myself worse because I keep doing stuff when my body is no longer capable. I only take medication if I absolutely need to. In fact, I've always prided myself on not taking meds. BUT now there is something very wrong, and no one will help.

 

I have many my blessings in my life so I won't discount them no. They do bring a real happiness that can't be replicated. I just feel haunted with my mistakes at times. Due to a combination of a misdiagnosis resulting in GABA changing medication I didn't need followed by a horrible reaction to it, a terrible cold turkey withdrawal and life stress, I listened to music in the car to deal with life and that did it for me.

My tinnitus which was mild for 10 years suddenly became intrusive and I just wish I knew better.

Yes I was going through some hell and I just made it worse due to my own streas which is the hardest part to accept.

But it's been 3 months since it got intrusive and I've noticed for the first time long periods in the day where I'm tolerating it and it is slightly quieter so these are good signs.

I'll not give up hard as it may be because a good sign is better than no sign. And the drug companies working on treatments is definitely giving hope also.

 

When I had Lyme in 2003, I had an over 104F fever and couldn't move my neck. The first doctor i went to said since my blood work and imaging were normal, it was probably just the stress of vet school. I think some doctors would rather bullshit you than admit they have no idea and suggest you seek a second opinion.

 

What exactly are you symptoms again? Have you tried sitting in a very hot sauna for 15 minutes a day? If you have any sinus problems or infections it could help. Needs to be 160 degrees minimum.

 

Ahh, if only I could go sit in the sauna. The UK is in lock down. We can't go anywhere apart from work.

Wishing I lived in Finland or Norway right now - bound to find a sauna there.

 

Ahhhh damn. I’m in the US, in Florida, we’re living normal life over here lol. Maybe sit in the shower with the heat all the way up for a while. It could help you sweat out the toxins.

 

You have asked some important questions and I'm sure they have crossed the minds of people affected by tinnitus. I say affected because this condition comes in many forms and intensities no two people experience it the same. Those that have habituated may occasionally find it troublesome but still able to cope quite well, while others are not bothered by it at all.

I have had noise induced tinnitus for 25 years and for a time, habituated until it changed in 2008 after second noise trauma. It took over four years to habituate again. It now has large fluctuations in intensity that can range from: silent, mild, moderate and severe. No two days are the same and there are times I need to take Clonazepam to help reduce the severity if the tinnitus, doesn’t calm down by itself. This medication is usually taken for one or two days then stopped.

Life is problematic, we all have problems and therefore, I try to focus on the positive things in my life even in the downtimes. This is where I direct my attention as there was a time, the tinnitus was so severe I was in bed for much of the day as I just couldn’t function. I look at what I’m able to do with tinnitus and not at what I can’t. When the tinnitus is particularly troublesome and I’m unable to read a book it can be frustrating. However, I hold on to the thought that it will calm down and I will be able to resume this favourite pastime of mine, as well as listening to music.

Occasionally, I take a backward glance and see how far I’ve come and what I had endured to get here. That way I don’t feel I am just existing or have no other choice. Life is for living so I’m pleased to be here and will try to enjoy it the best that I can, because there was a time it wasn’t so pleasant and hope never to go there again.

Michael

 

When I got a nasty eyelid infection a few weeks ago, I got lucky at the urgent care. The doctor there admitted that she needed a second opinion and called a specialist she knew, and took photos to send over to them for a second opinion.

 

I enjoy my work. I work as a sign language interpreter for a child in school.
It is nice to see when I get my message across.

I enjoy talking to friends (don't have that many, but at least someone); going for a walk...

The tinnitus makes life harder, and right now a lot harder.
Like someone said: going uphill.

Yesterday I sat out in the sun, and it was a beautiful day.
Despite the tinnitus and being tired.

Above all, if I cannot find the joy within
then I turn to that which is objective, outside of me:
"He has delivered us from the domain of darkness
and transferred us to the kingdom of his beloved Son,
in whom we have redemption, the forgiveness of sins."
Colossians 1:13-14

 

I'm from Norway and we don't have a lot of saunas, unfortunately. You'll find some in public baths (which are closed atm) and some wealthy people own them privately. But you're spot on with Finland

 

I can completely empathize with you. It will be three years in March with tinnitus. The fluctuations are one of the hardest parts of tinnitus. Like you said even on the quiet days there's always the thought of louder tinnitus the next day. My tinnitus has improved and I've habituated somewhat but it seems those concerns will never go away. Life is certainly more of a struggle with tinnitus. A burden only a sufferer can know and that's even difficult because we all experience it differently. But, being on this site has shown me that we all share many of the same concerns. Concerns largely ignored by the medical community. I've never felt so written off in my life.

 

I have a sauna in my basement but I don’t know how to use it. It says Finn Star on it. Maybe they have some value health wise?

You have so many serious symptoms I am surprised you haven’t been able to see a Dr. yet?

 

Facilities offering sauna bathing often claim health benefits that include detoxification, increased metabolism, weight loss, increased blood circulation, pain reduction, antiaging, skin rejuvenation, improved cardiovascular function, improved immune function, improved sleep, stress management, and relaxation.

 

Have they done any imaging? There are obviously a lot of differentials but this sounds a bit like my friend's dad who had sarcoids.

 

Man! I'm pretty jealous of you haha. What country you from? I'm going to come round yours. Sauna party!

I phoned the doctors today and told them all my symptoms, and said I must see someone because I really don't feel very well. They actually agreed. It's only taken a year. Usually they just chuck me on antibiotics and steroids... I don't want pills, I want investigations.

So fingers crossed. I'm so drained of life right now. I just need a massive hug.