What's Your Ailment?

[A.Goldberg]

I am so humbled just by reading this thread and everyone that is struggling in one way or another. Puts things int o perspective. I applaud you all for the grace in which you conduct yourselves and keep on going with such extraordinary fortitude.
I wasn't going to post this but a friend directed me to this page after certain events happened on a thread in the accessories for apple watch forum. I wanted to share my story with those of you that know what its like to live with chronic pain.
I for one, too deal with several illnesses. Some of which have no cure, and some of which have taken me out of things I loved to do like reviewing tech products on youtube.
When I was in the Marines I got diagnosed with Chronic Myeloid Leukemia so I had to get out. In a way I am grateful for having gotten sick for having not been, I would've never met my husband. My best friend and the father of our children.
Then, in 2010 after trying to conceive for nearly 5 years for our second baby we got the amazing surprise that we were expecting triplet. It was a hard pregnancy to say the least, with Hyperemesis, I lost nearly 60 pounds during my first trimester, and during labor at 34 weeks, only one of our 3 babies survived, and shortly after he was born I went in to cardiac arrest. Sent to the ICU for almost 4 months, having only seen my newborn baby, only for a week and consequently after coding in the ICU thrice, I was finally diagnosed with a host of illnesses that include Systemic Lupus Erythematosus, R.A, Fybromialgya, Raynauds, Sjogrens, Severe heart failure for which I had an eject fraction of less than 10%, and many other illnesses that follow after Lupus. I was told I wouldn't make it to the end of the year, and after I did, My ultimate prognosis was 5 years, 3 and half of which have come to pass.
This is the day I met my baby for the first time after I saw him only for 7 days after birth to not see him again until he was 3.5 months old. <3
View attachment 569655

I have been on chemo since I was diagnosed and a couple of days ago I was told that chemo isn't helping anymore so I am done with chemo and hoping to start a new drug that could potentially save my life but because the drug is more expensive than my car per little vial for which I need 4 a month, my family is now treating me like its the last time they'll see me for Tricare although the best insurance We have at home, has not approved and even after appealing, they continue to deny the approval of said drug which is called Acthar and it runs at almost $43K per 5ml vial.

Even then, I am a very optimistic person and I have gone through so much that at this point am more interest in quality than quantity. The only regret I have is not being able to see my children grow up if the inevitable happens.I do things my doctor believe is erratic, I know my body and thats why I push myself to live because I dont have to wait until things get bad to start enjoying the life I have in the now. I go kayaking, snowboarding, I'm an Archer, and hiking, trekking, backpacking, fishing, traveling, I continue to prove everyone that God has the last word.
There is more than 5 million people worldwide diagnosed with this terrible disease that is lupus and as of now there is still no cure to be found. The saddest thing of it all is that with medications priced so high, makes it impossible for many to survive, since they can't afford such treatments.

Anyhow, if it wasn't for this illness, I wouldn't be the happy woman I consider myself to be. Not lucky for I have worked my @$$ off to be where I am, but I am indeed very blessed for having an amazing support system in my husband and the small circle of people that know my struggle and they know that I am not okay, even when they ask if I am to which I reply I am doing fantastic. Why? Because, the illnesses I am diagnosed with don't define me but how I choose to deal with them does. I refuse to let this disease that is lupus take control of my life, and as such I also make the best out of the circumstances. The sky may look grim sometimes, but one thing for certain is that above those gray clouds, there's a sun that is always shinning and sooner rather than later, clouds will break allowing the sunshine to get through.
It isn't the disease but how you face it that makes you or breaks you, and I choose to let it only do one thing for me, and that is to smile through adversity because I only have this life, and I don't care that I am dying. I care more for the moments when I am alive enjoying every single breath, the warmth of my husband's kiss on my lips, and the sweet voice of my boys when they call me Mom. Those things alone are worth fighting, and they are why I continue to fight. Don't ask me how I do it. The question is actually why I do it, and the answer is my family.
Much like all of you, I refuse to give up. So I keep on hiking up this mountain and it gets hard, because the pain never goes away, but I know that at the end at the summit a fantastic view awaits and that alone is the reward for all the pain and suffering I've been through.
I also have 2 angels watching over me from above. Life doesn't get better than it is right now, where I chose to say in the mornings Thank you Lord for another breath of oxygen filling my lungs, blood running through my veins, and the heart beat that skips every time I see my children smile, and even the beautiful view each morning when I wake to my husband staring at me saying he wants to soak in every moment of me even when I sleep, worry-less about what the future holds for us but one thing is for certain is that we are doing this together and that i something that will never change and Lupus nor any other illness will ever take away from me. I live for the little moments of happiness and that alone is worth putting up the fight I continue to give every day.

I wish you all health a plenty, love till your heart burst with happiness and many years ahead to enjoy around those who love and cherish you for as long as your bodies allow you, keeping in mind, you were given this life because you're strong enough to live it. Sorry for the long post btw. Know that each and everyone of you are an inspiration to me personally. I read every single post and won't deny, I cried reading some of these posts, and as I said before I am so humbled by what you all have gone and continue to go through, I wish you nothing short of a long life because you all deserve that an more. Be well and know that you are loved, admired and thought of. <3

Wow! You have been through a lot! First, I have so much respect and admiration for how you are dealing with your situation. You have a lot of courage and tenacity! Autoimmune diseases, especially lupus are rough. I'm so sorry to hear all that your going through, but I think you have the right idea, no one makes it through life unscathed in one way or another. It might be physical, mental, social, economic, etc. No one has a perfect life, all we can do is make the best of what we have.

I work in healthcare and share your pain with the cost. It's absolutely mind blowing how expensive some of these drugs are. To make it worse, drug shortages are rampant, especially in the cancer realm. I'm so sorry that this is inhibiting your treatment. Keep pushing, that's all you can do.

You have a beautiful family! Something I hope I can achieve one day.

I haven't posted in this thread but sympathize and empathize with everyone suffering. I have somewhat of a tarnished medical record.

- When I was 4-5 years old I was diagnosed with ALL, the most common childhood cancer, which is a type of leukemia. It's very treatable, and I have made a full recovery. Someday I plan on starting a family, but I have always worried this may not be possible due to the long term effects of chemo on adolescents.

- When I was 17 I received a spinal injury. As a result I have nerve damage. I have lived in constant back pain for over 7 years. For about years my athletic life dwindled (college sports ended after my freshman year), I was agitated/depressed, etc. Doctors have told me I'd be in pain for the rest of my life, that it would only get worse, and that narcotics should be integral in my treatment. I currently taken 0 meds and exercise (yoga + swimming). I have good days and bad but the pain is manageable and really inconsequential these days.

- When I was 23 my 26 year old brother unexpectedly died. This was very depressing, as it was just another problem in a very problematic couple month period. The benefit that came out of this was I was able to identifiy some long term depression and axiety I had never addressed.

- I've had a handful of weird medical issues pop up, probably due to chemo. One of these is a "leaky" blood brain barrier- which basically means more of a drug than expected will enter my brain. This was realized 2 years ago. I have to be very careful taking anticholinergic drugs. A couple years ago I was in a delirium for about 2 weeks before I started hallucinating and finally realized there was a problem. Faces on the ceiling and tree frogs in my shower isn't normal. Delirium sneaks up on you and explained why I kept getting lost in my own neighborhood. By the time I got to the doctor, I couldn't remember my docs name, the year, a series of more than 2 words, etc. I couldn't remember words and would unknowingly say things in Hebrew, in which I'm also fluent, thinking it was English. So yes, no more Benadryl for me. Good thing I wasn't working at the time!

- Oak and Birch pollen allergies

 

[Huntn]

I am so humbled just by reading this thread and everyone that is struggling in one way or another. Puts things int o perspective. I applaud you all for the grace in which you conduct yourselves and keep on going with such extraordinary fortitude.
I wasn't going to post this but a friend directed me to this page after certain events happened on a thread in the accessories for apple watch forum. I wanted to share my story with those of you that know what its like to live with chronic pain.
I for one, too deal with several illnesses. Some of which have no cure, and some of which have taken me out of things I loved to do like reviewing tech products on youtube.
When I was in the Marines I got diagnosed with Chronic Myeloid Leukemia so I had to get out. In a way I am grateful for having gotten sick for having not been, I would've never met my husband. My best friend and the father of our children.
Then, in 2010 after trying to conceive for nearly 5 years for our second baby we got the amazing surprise that we were expecting triplet. It was a hard pregnancy to say the least, with Hyperemesis, I lost nearly 60 pounds during my first trimester, and during labor at 34 weeks, only one of our 3 babies survived, and shortly after he was born I went in to cardiac arrest. Sent to the ICU for almost 4 months, having only seen my newborn baby, only for a week and consequently after coding in the ICU thrice, I was finally diagnosed with a host of illnesses that include Systemic Lupus Erythematosus, R.A, Fybromialgya, Raynauds, Sjogrens, Severe heart failure for which I had an eject fraction of less than 10%, and many other illnesses that follow after Lupus. I was told I wouldn't make it to the end of the year, and after I did, My ultimate prognosis was 5 years, 3 and half of which have come to pass.
This is the day I met my baby for the first time after I saw him only for 7 days after birth to not see him again until he was 3.5 months old. <3
View attachment 569655

I have been on chemo since I was diagnosed and a couple of days ago I was told that chemo isn't helping anymore so I am done with chemo and hoping to start a new drug that could potentially save my life but because the drug is more expensive than my car per little vial for which I need 4 a month, my family is now treating me like its the last time they'll see me for Tricare although the best insurance We have at home, has not approved and even after appealing, they continue to deny the approval of said drug which is called Acthar and it runs at almost $43K per 5ml vial.

Even then, I am a very optimistic person and I have gone through so much that at this point am more interest in quality than quantity. The only regret I have is not being able to see my children grow up if the inevitable happens.I do things my doctor believe is erratic, I know my body and thats why I push myself to live because I dont have to wait until things get bad to start enjoying the life I have in the now. I go kayaking, snowboarding, I'm an Archer, and hiking, trekking, backpacking, fishing, traveling, I continue to prove everyone that God has the last word.
There is more than 5 million people worldwide diagnosed with this terrible disease that is lupus and as of now there is still no cure to be found. The saddest thing of it all is that with medications priced so high, makes it impossible for many to survive, since they can't afford such treatments.

Anyhow, if it wasn't for this illness, I wouldn't be the happy woman I consider myself to be. Not lucky for I have worked my @$$ off to be where I am, but I am indeed very blessed for having an amazing support system in my husband and the small circle of people that know my struggle and they know that I am not okay, even when they ask if I am to which I reply I am doing fantastic. Why? Because, the illnesses I am diagnosed with don't define me but how I choose to deal with them does. I refuse to let this disease that is lupus take control of my life, and as such I also make the best out of the circumstances. The sky may look grim sometimes, but one thing for certain is that above those gray clouds, there's a sun that is always shinning and sooner rather than later, clouds will break allowing the sunshine to get through.
It isn't the disease but how you face it that makes you or breaks you, and I choose to let it only do one thing for me, and that is to smile through adversity because I only have this life, and I don't care that I am dying. I care more for the moments when I am alive enjoying every single breath, the warmth of my husband's kiss on my lips, and the sweet voice of my boys when they call me Mom. Those things alone are worth fighting, and they are why I continue to fight. Don't ask me how I do it. The question is actually why I do it, and the answer is my family.
Much like all of you, I refuse to give up. So I keep on hiking up this mountain and it gets hard, because the pain never goes away, but I know that at the end at the summit a fantastic view awaits and that alone is the reward for all the pain and suffering I've been through.
I also have 2 angels watching over me from above. Life doesn't get better than it is right now, where I chose to say in the mornings Thank you Lord for another breath of oxygen filling my lungs, blood running through my veins, and the heart beat that skips every time I see my children smile, and even the beautiful view each morning when I wake to my husband staring at me saying he wants to soak in every moment of me even when I sleep, worry-less about what the future holds for us but one thing is for certain is that we are doing this together and that i something that will never change and Lupus nor any other illness will ever take away from me. I live for the little moments of happiness and that alone is worth putting up the fight I continue to give every day.

I wish you all health a plenty, love till your heart burst with happiness and many years ahead to enjoy around those who love and cherish you for as long as your bodies allow you, keeping in mind, you were given this life because you're strong enough to live it. Sorry for the long post btw. Know that each and everyone of you are an inspiration to me personally. I read every single post and won't deny, I cried reading some of these posts, and as I said before I am so humbled by what you all have gone and continue to go through, I wish you nothing short of a long life because you all deserve that an more. Be well and know that you are loved, admired and thought of. <3

I started this thread when my life was jarred at age of 60 with what I describe as minor and mostly age related issues which makes me look like a crybaby compared to the no-**** serious issues some of our readers like you have shared. The phrase "you ain't seen nothing" when I compare your ordeal in life to many of the issues most people have to contend with. I am impressed with your strength which I don't think most of us know we have until we find ourselves in such a situation like yours. I believe a refusal to give up on life, a glass half full philosophical and/or spiritual view is required to successfully face and fight this which you appear to have. I wish you the best considering the adverse conditions and easy for me to say, keep up the good fight.

Wow! You have been through a lot! First, I have so much respect and admiration for how you are dealing with your situation. You have a lot of courage and tenacity! Autoimmune diseases, especially lupus are rough. I'm so sorry to hear all that your going through, but I think you have the right idea, no one makes it through life unscathed in one way or another. It might be physical, mental, social, economic, etc. No one has a perfect life, all we can do is make the best of what we have.

I work in healthcare and share your pain with the cost. It's absolutely mind blowing how expensive some of these drugs are. To make it worse, drug shortages are rampant, especially in the cancer realm. I'm so sorry that this is inhibiting your treatment. Keep pushing, that's all you can do.

You have a beautiful family! Something I hope I can achieve one day.

I haven't posted in this thread but sympathize and empathize with everyone suffering. I have somewhat of a tarnished medical record.

- When I was 4-5 years old I was diagnosed with ALL, the most common childhood cancer, which is a type of leukemia. It's very treatable, and I have made a full recovery. Someday I plan on starting a family, but I have always worried this may not be possible due to the long term effects of chemo on adolescents.

- When I was 17 I received a spinal injury. As a result I have nerve damage. I have lived in constant back pain for over 7 years. For about years my athletic life dwindled (college sports ended after my freshman year), I was agitated/depressed, etc. Doctors have told me I'd be in pain for the rest of my life, that it would only get worse, and that narcotics should be integral in my treatment. I currently taken 0 meds and exercise (yoga + swimming). I have good days and bad but the pain is manageable and really inconsequential these days.

- When I was 23 my 26 year old brother unexpectedly died. This was very depressing, as it was just another problem in a very problematic couple month period. The benefit that came out of this was I was able to identifiy some long term depression and axiety I had never addressed.

- I've had a handful of weird medical issues pop up, probably due to chemo. One of these is a "leaky" blood brain barrier- which basically means more of a drug than expected will enter my brain. This was realized 2 years ago. I have to be very careful taking anticholinergic drugs. A couple years ago I was in a delirium for about 2 weeks before I started hallucinating and finally realized there was a problem. Faces on the ceiling and tree frogs in my shower isn't normal. Delirium sneaks up on you and explained why I kept getting lost in my own neighborhood. By the time I got to the doctor, I couldn't remember my docs name, the year, a series of more than 2 words, etc. I couldn't remember words and would unknowingly say things in Hebrew, in which I'm also fluent, thinking it was English. So yes, no more Benadryl for me. Good thing I wasn't working at the time!

- Oak and Birch pollen allergies

My life has been a cakewalk in comparison. When I become focused on relative human suffering, it gets me thinking about why, if there is a reason, or if it just a condition of being a biological organism. I won't take this thread into the realm of PRSI, but made a comment over there without intent of starting a debate with anyone.

 

[A.Goldberg]

My life has been a cakewalk in comparison. When I become focused on relative human suffering, it gets me thinking about why, if there is a reason, or if it just a condition of being a biological organism. I won't take this thread into the realm of PRSI, but made a comment over there without intent of starting a debate with anyone.

I think a sense of gratitude is one of the best virtues to possess. No matter how terrible I perceive my life, things can always be worse. Dwelling on things we don't have (health, possessions, etc) only intesifies the negative feelings. It took me a long time to realize this, but I think many people never do.

I'm 26, but I consider myself a pretty health person. I swim a few miles per day, 5-6 days a week. The more I think about my back pain, the worse it is. So I eventually decided to accept it and move on. My cancer was decades ago, there are still some lingering effects, but I can't let that interfere with my life now. I don't really even very much from that time period. There's always that worry of a relapse in the back of my head, but until that happens worrying is just a waste of energy.

Humans yearn for a sense of control- in every aspect of their life. The fact is we have very little. We are bound by the laws of nature. Making the best of what we have is all we can do.

 

[AlliFlowers]

My grandmother always used to say "a bunch of people get together and put their problems in a bucket. If you get your choice, you'd wind up taking back your own."

I know there are still a lot of people I wouldn't trade with. I still wake up every morning, and have plenty of wonderful things and people to entertain me and my life as pleasant as possible. It could always be worse.

 

[Roller]

As a physician, I unfortunately often see patients whose illnesses make my own health problems seem trivial by comparison. The ultimate challenge is to be satisfied with one's condition - health, possessions, whatever - without comparing oneself to others. That's a condition I aspire to, but will probably never attain. So I do what most people do - compare myself to those who are worse off and try to be thankful for what I have.

 

[Khalanad75]

Mine seems all brain related.

I was diagnosed with Multiple Sclerosis 13 years ago. The physical side that comes with this can be "fun" because it is seriously a day to day issue of what wants to work and what doesn't. The hardest part is the mental aspect. Knowing full well what you want to say and to have it come out nothing like that or just to just stumble over your words is frustrating to no end.

On top of that, 4 years ago I was diagnosed Bipolar II with anxiety.

With these 2 ailments I always feel like some part of me is separate and always fighting for control.

 

[Huntn]

Mine seems all brain related.

I was diagnosed with Multiple Sclerosis 13 years ago. The physical side that comes with this can be "fun" because it is seriously a day to day issue of what wants to work and what doesn't. The hardest part is the mental aspect. Knowing full well what you want to say and to have it come out nothing like that or just to just stumble over your words is frustrating to no end.

On top of that, 4 years ago I was diagnosed Bipolar II with anxiety.

With these 2 ailments I always feel like some part of me is separate and always fighting for control.

I realize this means little from a stranger on the net, but hang in there... I have no answer as to the why, if there is a knowable why, that the health burdens for some of us are so much greater than for others.

 

[Khalanad75]

I realize this means little from a stranger on the net, but hang in there... I have no answer as to the why, if there is a knowable why, that the health burdens for some of us are so much greater than for others.

Thanks. I have great support from my wife, so life is generally good. I have also wondered why some of us seem to be more "piled on" than others.

Take my wife for example, she's fit as a fiddle, no issues. She's even been blessed with "eagle eyes". 20/10 still at 35, where as I can not even see half a foot in front of my face clearly without my glasses.

 

[A.Goldberg]

Mine seems all brain related.

I was diagnosed with Multiple Sclerosis 13 years ago. The physical side that comes with this can be "fun" because it is seriously a day to day issue of what wants to work and what doesn't. The hardest part is the mental aspect. Knowing full well what you want to say and to have it come out nothing like that or just to just stumble over your words is frustrating to no end.

On top of that, 4 years ago I was diagnosed Bipolar II with anxiety.

With these 2 ailments I always feel like some part of me is separate and always fighting for control.

Sorry to hear about your MS. I have a few friends and family members diagnosed. A good friend of mine is pretty young but has pretty severe case, it can be a very difficult condition to cope with.

It's difficult to know that part of you is working against yourself- like autoimmune diseases (your body fighting itself) of cancer (your body's cells growing without inhibition). If we could only tell our biology to stop doing am whatever it's doing wrong...

About a year ago working on psychiatry a mentor/colleague of mine explained acceptance of chronic illness to me in a way that really hits the nail on the head and has since be confirmed by myself and others. Oftentimes we think of illness as a separate entity from ourselves, an invader, something doing action against us. In some cases it is, like an infection, but in many it is not. As long as we view the illness as this way we're always in a battle. If we change our perspective and look at the illness as part of us, our innate self, it opens a whole new door for overcoming the discontent it causes and finding acceptance and peace. Especially with mental health, I think this is true. We're not shifting the blame onto something else that we can continuously commiserate about. If we invision the disease as something as our very core, we're more adapt to see it as part of our very existence rather and live with it, rather than something external pity ourselves. Idk if that makes sense to everyone?

This does not mean treatment is something that should be ignored. I think in any case it's important to take pride in ones recovery/management. For some, managing their condition is seen as a burden. But Why look at it that way when it can be seen just as a basic necessity, like eating food. Eating or drinking or dedicating could is seen as a burden though the vast majority of us it's not.

My philosophy is that life is all about perspective. It's well documented how you perceive things will determine how you feel. Why not try to look at things in the best light possible? Life is too short to be miserable. I've already wasted plenty of time on that.

My life health wise I suppose has been much more complicated than people my ages. I can honestly say I have yet to find anyone I'd trade my life with. There are certainly areas I wish I was better in, but on the whole I have yet to find anyone living the prefect life.

 

[AlliFlowers]

The hardest part is the mental aspect. Knowing full well what you want to say and to have it come out nothing like that or just to just stumble over your words is frustrating to no end.

I hear ya. I never used to have any problem finding the right word (in two languages). Chemo brain has taken my sharpness there, and I can't even find a related word now. It's so frustrating - it caused me to give up a very good podcast that I'd always enjoyed doing. There are days in school that I'm just staring blankly at my students.

 

[SkyBell]

- I've been diabetic since I was 14, for which I take metformin and dapagliflozin (farxiga) as well as insulin glargine.

- If you want to call it an "ailment", I am red-green colorblind, as well as mildly myopic.

- No official diagnosis yet, but I've had terrible pain in my thigh and lower back for three years now, making it quite the struggle to sit down for long periods of time; my doctor is working under the assumption of sciatica thus far, and I take gabapentin for it.

I'm not the healthiest person out there, but I know that despite the daily inconveniences these conditions present me, I am fortunate compared to many others.

 

[ardchoille50]

Not really an ailment, but I suffer from bilateral sensorineural hearing loss (due to noise damage). I wear hearing aids and they do a great job of amplifying sound, but they don't help me understand what I'm hearing - I rely mostly on lip reading and environmental vibrations. Some people look at deafness as a disability, but I can get a good nights sleep when the neighbors are fighting

 

[Doctor Q]

... If you want to call it an "ailment", I am red-green colorblind...

But only very slightly, right?

 

[SkyBell]

But only very slightly, right?

Good gosh, that post is what, eight years old now? Can't believe you remembered that one sir. Yes, that is correct, it's minor enough as to not cause any real problems for me in my daily life, which is why I don't really consider it much of an "ailment".

 

[Khalanad75]

About a year ago working on psychiatry a mentor/colleague of mine explained acceptance of chronic illness to me in a way that really hits the nail on the head and has since be confirmed by myself and others. Oftentimes we think of illness as a separate entity from ourselves, an invader, something doing action against us. In some cases it is, like an infection, but in many it is not. As long as we view the illness as this way we're always in a battle. If we change our perspective and look at the illness as part of us, our innate self, it opens a whole new door for overcoming the discontent it causes and finding acceptance and peace. Especially with mental health, I think this is true. We're not shifting the blame onto something else that we can continuously commiserate about. If we invision the disease as something as our very core, we're more adapt to see it as part of our very existence rather and live with it, rather than something external pity ourselves. Idk if that makes sense to everyone?
.

Sorry about your young friend, MS is something that can be hard to cope with, some days being worse than others. I was already married when I got diagnosed, but for a single person (if she is) it truly does feel like it is a disease that can steal your youth from you.

It's interesting what you wrote about mental health though. When I first got diagnosed BP II, I fought it thinking the p doc was wrong. Sure I have been depressed a lot in my life and have had some highs, but it surely wasn't to bipolar level. It was after my third different p doc also came to the BP II diagnosis that I looked into all the material on it and finally agreed. And with that agreement, there was an acceptance of this is who I am. I don't try to fight it, just try to live with it being part of me.

 

[Huntn]

Regarding MS, an acquaintance who suffered from it a decade ago told me this joke:
The good news about MS is that it does kill you, the bad news is that it does not kill you....
it takes and takes.

 

[AlliFlowers]

Not really an ailment, but I suffer from bilateral sensorineural hearing loss (due to noise damage). I wear hearing aids and they do a great job of amplifying sound, but they don't help me understand what I'm hearing - I rely mostly on lip reading and environmental vibrations. Some people look at deafness as a disability, but I can get a good nights sleep when the neighbors are fighting

Most hearing loss is due to noise damage. While we all love our mobile devices, I'm afraid we are looking forward to an entire generation who will be wearing hearing aids.

 

[Clix Pix]

I was born with Treacher Collins Syndrome, which is a fairly rare syndrome affecting primarily the bone structure of the face and head, so that I'm another who wears hearing aids and have since I was around six years old. Now they fit a child with hearing aids as soon as they realize that there is a hearing problem, but back then the philosophy was to wait until the child was old enough to take proper care of the hearing aid(s). !! I do have some hearing, as mine is a conductive loss as opposed to sensorineural, and I wear bilateral bone-anchored hearing aids (BAHAs) which enable me to hear at close to normal levels, as for me, the amplification is basically all I need. As a child I developed good lip-reading skills, too, which was helpful prior to having any aids at all and then especially during the early years when hearing aid technology was not as good as it is now.

Yes, there are advantages to being able to take away sound by simply removing or turning off the aids, especially at nighttime or in particularly noisy situations.

 

[A.Goldberg]

Sorry about your young friend, MS is something that can be hard to cope with, some days being worse than others. I was already married when I got diagnosed, but for a single person (if she is) it truly does feel like it is a disease that can steal your youth from you.

I can only imagine the daily struggles someone with MS must face. I a couple of the MS diagnosed people I know wel have become very involved with the MS community- from peer support to volunteering to research. It's inspiring stuff and I imagine helps provide a sense of taking action.

Oftentimes I feel medicine focuses too much on the individual diagnosis, not on the individuals psyche, or the family's for that matter. One way to improve healthcare overall would be to stop assuming diseases happen in a vacuum and that treating the disease directly is the be-all-end all to curing or managing the condition. I believe there is a strong mind-body connection, so such disruptive diseases should take deeper consideration of this. Stress is a great way to exacerbate disease, so why aren't patients assisted in managing stress?

It's interesting what you wrote about mental health though. When I first got diagnosed BP II, I fought it thinking the p doc was wrong. Sure I have been depressed a lot in my life and have had some highs, but it surely wasn't to bipolar level. It was after my third different p doc also came to the BP II diagnosis that I looked into all the material on it and finally agreed. And with that agreement, there was an acceptance of this is who I am. I don't try to fight it, just try to live with it being part of me.

The Küber-Ross Model, while not entirely valid, summarized feeling grief very well- Denial, Anger, Bargaining, Depression, and Acceptance. Bipolar II is a very debated and in my opinion over diagnosed condition (I'm making no judgement into your condition either way). It can be tricky to accurately nail down and once diagnosed it's hard to change. Most people don't want to face the fact they have a condition, it admits that we're not in complete control and not immortal, which is scary stuff. As long as you admit there is a problem and have he desire to resolve the problems, labeling it in some cases is arbitrary.

A few months after my brother died I was taking an SSRI and the Dr. thought I was bipolar because I became hypomanic.(It was later discovered that this was caused by the blood brain barrier issue likely caused by chemo when I was 5. Unfortunately I had to have toxic effects from seemingly safe, verified by blood tests, doses of imipramine before and lithium after for this to be realized). The SSRI experience have me insight into hypomania- expressive spending, excessive sex, excessive exercise, 2-4hrs of sleep, and even a 3:00AM spur of the moment road trip from Boston to New York City to buy bagels. I no longer feel safe taking any drug that easily transports into the brain. Luckily, it doesn't seem like I need any such drugs.

 

[A.Goldberg]

I was born with Treacher Collins Syndrome, which is a fairly rare syndrome affecting primarily the bone structure of the face and head, so that I'm another who wears hearing aids and have since I was around six years old. Now they fit a child with hearing aids as soon as they realize that there is a hearing problem, but back then the philosophy was to wait until the child was old enough to take proper care of the hearing aid(s). !! I do have some hearing, as mine is a conductive loss as opposed to sensorineural, and I wear bilateral bone-anchored hearing aids (BAHAs) which enable me to hear at close to normal levels, as for me, the amplification is basically all I need. As a child I developed good lip-reading skills, too, which was helpful prior to having any aids at all and then especially during the early years when hearing aid technology was not as good as it is now.

Yes, there are advantages to being able to take away sound by simply removing or turning off the aids, especially at nighttime or in particularly noisy situations.

I watched a documentary on TCS a while ago but I suppose I don't know much more than that. I may be wrong but I believe it's on the list of major genetic diseases of Ashkanazi Jews. My sister is a reconstructive oral surgeon and she's mentioned in a couple years ago back in dental school watching an operation on someone with TCS.

That's fascinating they used to wait to give hearing aids. Reading about past medical ethics of the past is an interest of mine. One of my favorite celebrities is Marlee Matlin. She's an amazing fundraiser and does a lot to support the hearing impaired community. I briefly met her about 4 years ago through a family friend. She's quite a woman, and absolutely gorgeous. At the time she was with doing a lot of fundraising for the Starky Foundation, which donates hearing aids and such to underprivileged people around the world .

Every year on my birthday I decide what charities I will give to for the year. I will have to reconsider Starky. Thank you for bringing that to mind!

 

[Dark Void]

Hi everyone,

I have severe obsessive compulsive disorder that is coupled with anxiety, depression, and paranoia. I actually started a thread here on OCD but I did not know this thread existed prior. Even though I found the courage to make that thread, I plan on going into much more detail here and it still takes some to simply make this post - as I know this disorder sounds very ridiculous to those that do not have it or cannot grasp it - but I'd be really appreciative to those that give this a read. I'm sorry if it turns out to be pretty lengthy, but I will try to keep it short.

I'm currently 22, I am not sure when it started but I can remember as far back as the 6th grade when I was about 11 years old of when I started to become aware of it. I became a "checker" at that age and became extremely paranoid about losing my possessions, especially things that weren't mine like school textbooks. I kept my backpack at the end of my bed and every night I would check on them for at least an hour before convincing myself that it would be fine and I could go to sleep. I was afraid of losing them because my family was struggling financially and they would have been expensive to replace if I wasn't able to keep watch of them. I literally would unzip the particular compartment of my backpack, stare at them, try to close it, couldn't. I kept trying, sometimes I could close it but not be able to walk away from it, so on and so forth until a certain "feeling" occurs where it is okay to walk away from and in my mind they are there.

The moral of that isn't that I'm afraid of textbooks, that is just when I became aware that I had a serious problem. I know it may seem so ridiculous to read that but ever since then it has gotten worse. Most people who have OCD have the checking problem with things like locked doors, windows, or appliances being left on due to fear of things like break ins or house fires just to give an example. 11 years later, the checking (which is just a "subcategory" of OCD if you will) has gotten much worse as I said. I, to put it basically, think things that are important to me have the ability to, I guess, disappear, or I convince myself that they are lost. It's hard to explain, especially if sane people read this. The best example that I can give is checking my wallet. It usually takes me a long time to take it out of my pocket and set it somewhere after being out, because I have to constantly look at the inside of it to make sure all of my important cards and the like are there. Just looking at them once and noticing them doesn't satisfy it.

I have the problem with locked doors much like most do who obsessively check. I have to place my hand on the knob, try turning it to check if it is locked and try to walk away from it. Sometimes, or a good amount of the time, by doing so, I convince myself that me checking if it is locked has unlocked the door. I then open it with my key, step back inside, lock it from the inside, close it again. Rinse and repeat for many minutes, even hours. I have made myself late for work countless times before because I simply cannot walk away from the door and tell myself that it is locked, even though it more than likely is. This is just an example of how obsessive I can truly be.

Checking is just one aspect of the disorder as I mentioned. One of the other main obsessively compulsive habits that I suffer from is having to consolidate everything constantly. It is basically the opposite of hoarding, which goes hand in hand with OCD. I throw things away every single day. I have a constant fear of developing a past or a history, so I do my best to erase all evidence of everything. I am always looking for clean slates in life. I view things that aren't wiped clean as impure or tainted - both literally and more importantly figuratively. Things with pasts and histories are tainted. This branches out to basically everything that one could imagine in life - let's just use electronics since we are on a Mac forum after all. I find myself reformatting devices a lot - and it's just like checking the door knobs. Once doesn't work. Erasing the disk once in Disk Utility isn't satisfactory - it has to be done multiple times until it "feels" a certain way. If it gets tainted, I must start over. Once the urge hits me, I have to give in to it as the disease owns me. If I install something, simply deleting it and all of its system files is not satisfactory to me. I have to reformat the entire device or hard drive. It's a complete viscous circle and I must do it.

Another trait of OCD that I experience is obsessive decision making. It is driven by ridiculous notions and fears that pop into my head and making certain, random and small decisions will have a particular effect on my life. I noticed this around the same time that I noticed my checking, when in grade school I avoided every other tile on the floor when talking between classes because I thought that stepping on one after another would cause pain to loved ones. I don't have any sort of "walking" tendencies as of right now, but I do make these types of decisions daily to satisfy a borderline schizophrenic voice or idea that pops into my head at the exact moment of a decision. They are small, meaningless decisions that are made into problems because of this. For example, if I am getting dressed for the day and I notice a lot of shirts to choose from. I go to reach for one, and I convince myself that if I select the grey shirt instead of the black shirt then I will be killed today almost instantaneously as I go to choose. If I reach in the fridge, I convince myself that if I choose the water instead of the iced tea then this or that will happen or be prevented, etc etc until the point where it becomes obsessive and incapacitating.

I can continue with these different subcategories of OCD and trying to explain or expand it into everyday life but the largest thing to understand about it is that this all causes physical reactions and mental anxiety. You have to give in to these things or else you cannot continue to function or progress. Some may read this and think "well just lock the door and walk away." No, you can't, and that is why it is a mental disease. I wish these things were as easy as they are for a lot of people but it just consumes me. I shut people out and I make excuses to others because I don't want to have to explain why I can't do this or that with them, or for them, etc. It runs my life, and if it says its time to go check every window in the house, then it is time to go check every window in the house.

As you can imagine, this, along with other happenings in life have left me severely depressed. It is literally a minute by minute struggle. I am a very obsessive person and OCD is not just washing your hands and being neat as most outsiders perceive. It's basically a living hell. I live every single day obsessing over these daily tasks to the point of physical reactions and mental instability that most people breeze through without a second thought. I approach them with a second, third, forth, fifth, and sixth thought. Endlessly, until it feels "right" or until I lose myself. There have been times where I just give up and collapse at the risk of sounding dramatic. It is not a way to live, and I would not wish this on anyone, even if they deserved to live a miserable life.

Thanks if you took the time to read this, and I'm very sorry if I came off as all-knowing or dramatic. I am just describing my experiences, and I am not trying to suggest that this is the worst possible case scenario in terms of a mental disorder. I am thankful that I can function to a very slim extent but also fearful that I will lose even that ability very soon. It gets worse and worse every single day.

 

[Doctor Q]

Hi everyone

I have severe obsessive compulsive disorder that is coupled with anxiety, depression, and paranoia...

For those who didn't spot it, Dark Void's thread about OCD is here:

Is there anyone else here that suffers from OCD?​

 

[Clix Pix]

I watched a documentary on TCS a while ago but I suppose I don't know much more than that. I may be wrong but I believe it's on the list of major genetic diseases of Ashkanazi Jews. My sister is a reconstructive oral surgeon and she's mentioned in a couple years ago back in dental school watching an operation on someone with TCS.

That's fascinating they used to wait to give hearing aids. Reading about past medical ethics of the past is an interest of mine. One of my favorite celebrities is Marlee Matlin. She's an amazing fundraiser and does a lot to support the hearing impaired community. I briefly met her about 4 years ago through a family friend. She's quite a woman, and absolutely gorgeous. At the time she was with doing a lot of fundraising for the Starky Foundation, which donates hearing aids and such to underprivileged people around the world .

Every year on my birthday I decide what charities I will give to for the year. I will have to reconsider Starky. Thank you for bringing that to mind!

That is really interesting that you should mention the possibility of TCS being a "major genetic disease" of Ashkenazi Jews. First time I've heard that!! I don't really think it is something which affects primarily Jews. Many of the people with TCS or their families with whom I have come into contact either in person or online are not Jewish, although, yes, just as in a lot of situations, some are.

The thing with TCS is that it can be totally sporadic -- that is, crop up out of nowhere, with there being no previous genetic component. Once it has occurred, though, then the odds change signficantly so that it's 50-50 % per pregnancy that a child might be affected if one parent has TCS. It's autosominal dominant. I have friends with TCS where there was a familial origin, and because the disorder can range from extremely mild in expression to severe, there have been situations where it wasn't until a child was born with obvious TCS that it was recognized that one of the parents was a carrier. In other situations, the TCS is totally spontaneous, no one else in the family has it. What's even more interesting is that there are situations where a person with TCS has a child who is perfectly normal, unaffected at all. Some people with TCS go ahead and take chances anyway because they really want their own biological children, while others decide not to have children at all or they adopt.

As for hearing aids.....Starkey has long been a hearing aid manufacturer and it has been the one which supplied hearing aids to a lot of needy kids. Although I never used a Starkey, I always had the impression that the quality was not the best. As a child and young adult, I wore first Sonotone (no longer made) and then shifted to Oticon and then at the time of going into the bone-anchored hearing aid realm, went with the company which was then called "Entific," but which is now named Cochlear (as they provide both coclear implant devices and bone-anchored devices (BAHAs). The whole world of hearing devices has significantly changed over the past 20 years or so, offering a lot higher quality and more flexibility in fulfilling specific needs.

 

[A.Goldberg]

That is really interesting that you should mention the possibility of TCS being a "major genetic disease" of Ashkenazi Jews. First time I've heard that!! I don't really think it is something which affects primarily Jews. Many of the people with TCS or their families with whom I have come into contact either in person or online are not Jewish, although, yes, just as in a lot of situations, some are.

I'm not 100% sure, not even really 50% sure that TCS is one of these, I'll have to do my homework. The Jewish population is prone to many genetic diseases due to thousands of years of marrying within the same, relatively small gene pool. Different groups, such as the Ashkenazi (European) and Sephardic Jews (Spanish) have different diseases that crop up. Tay-Sachs is one of the prominent of these diseases. It shows up in all populations, but in abnormally high numbers amongst Ashkenazi Jews- apparently 1 in 27 is a carrier! My mother's brother is a carrier for Tay-Sachs, my mother is not thankfully. My uncle's wife is not a carrier, and thankfully their son is unaffected and not a carrier, which is a 25% chance.

The thing with TCS is that it can be totally sporadic -- that is, crop up out of nowhere, with there being no previous genetic component. Once it has occurred, though, then the odds change signficantly so that it's 50-50 % per pregnancy that a child might be affected if one parent has TCS. It's autosominal dominant. I have friends with TCS where there was a familial origin, and because the disorder can range from extremely mild in expression to severe, there have been situations where it wasn't until a child was born with obvious TCS that it was recognized that one of the parents was a carrier. In other situations, the TCS is totally spontaneous, no one else in the family has it. What's even more interesting is that there are situations where a person with TCS has a child who is perfectly normal, unaffected at all. Some people with TCS go ahead and take chances anyway because they really want their own biological children, while others decide not to have children at all or they adopt.

Now you have me reading all about TCS. It does not appear to be listed as a Jewish genetic disease, I must have been thinking of something else. Genetics has always been a subject that has simultaneously not interested me and fascinated me. The chances that we have the genetic makeup we each have are incredible. I wish I had memorized the odds of finding another person with the exact genetic make up. It's mind blowing. That's interesting that it can be passed down without being recognized. I didn't realize it could be so mild. Thanks for the info!

As for hearing aids.....Starkey has long been a hearing aid manufacturer and it has been the one which supplied hearing aids to a lot of needy kids. Although I never used a Starkey, I always had the impression that the quality was not the best. As a child and young adult, I wore first Sonotone (no longer made) and then shifted to Oticon and then at the time of going into the bone-anchored hearing aid realm, went with the company which was then called "Entific," but which is now named Cochlear (as they provide both coclear implant devices and bone-anchored devices (BAHAs). The whole world of hearing devices has significantly changed over the past 20 years or so, offering a lot higher quality and more flexibility in fulfilling specific needs.

I was aware Starkey was a manufacturer, but didn't know much about their quality. Do you know anything about the quality of their foundation? I always make a point to thoroughly research an organization before I donate. I can't say I know much about the field of hearing aids or audiologists, but would be interested in learning more. I suppose the gift of mediocre sound is better than none at all. It's something I can say I take for granted everyday that I don't even think of. When I think of health, I often forget about senses as they seem just part of my fundamental existence. It's quite tragic the number of people who cannot afford these devices.

 

[Clix Pix]

I'm not 100% sure, not even really 50% sure that TCS is one of these, I'll have to do my homework. The Jewish population is prone to many genetic diseases due to thousands of years of marrying within the same, relatively small gene pool. Different groups, such as the Ashkenazi (European) and Sephardic Jews (Spanish) have different diseases that crop up. Tay-Sachs is one of the prominent of these diseases. It shows up in all populations, but in abnormally high numbers amongst Ashkenazi Jews- apparently 1 in 27 is a carrier! My mother's brother is a carrier for Tay-Sachs, my mother is not thankfully. My uncle's wife is not a carrier, and thankfully their son is unaffected and not a carrier, which is a 25% chance.


Now you have me reading all about TCS. It does not appear to be listed as a Jewish genetic disease, I must have been thinking of something else. Genetics has always been a subject that has simultaneously not interested me and fascinated me. The chances that we have the genetic makeup we each have are incredible. I wish I had memorized the odds of finding another person with the exact genetic make up. It's mind blowing. That's interesting that it can be passed down without being recognized. I didn't realize it could be so mild. Thanks for the info!


I was aware Starkey was a manufacturer, but didn't know much about their quality. Do you know anything about the quality of their foundation? I always make a point to thoroughly research an organization before I donate. I can't say I know much about the field of hearing aids or audiologists, but would be interested in learning more. I suppose the gift of mediocre sound is better than none at all. It's something I can say I take for granted everyday that I don't even think of. When I think of health, I often forget about senses as they seem just part of my fundamental existence. It's quite tragic the number of people who cannot afford these devices.

I really don't know that much about the Starkey foundation, but certainly they are benefiting those who otherwise cannot afford hearing aids. In some situations, a family can get hearing aids for their child(ren) through Medicaid and such. Some insurance companies have limited coverage of hearing aids and they generally follow whatever Medicare's policies and coverage are. In the case of bone-anchored hearing aids/sound processors, they are actually classified as prosthetics, because they require surgical intervention to replace particular functions. There is a small screw which is implanted into the patient's mastoid process, and an additional screw, called the abutment, which extrudes through the skin slightly; the actual sound processor then snaps into place on the abutment. Sound, then, is conducted directly through to the internal screw and the bone, the cochlea picks it up and Bob's your uncle -- there is hearing!

Oh, I suppose I should clarify that BAHAs are NOT the same as Cochlear Implants, but again with CI there is a surgical procedure involved. The patient population is somewhat different, the diagnoses different. People who benefit from BAHAs are those with conductive loss due to atresia/microtia or single-sided conductive loss due to acoustic neuroma or sometimes infections and "glue ear".