Do Internet Health Forums Ever Help Anyone?

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For many years I have suffered from breathing problems related to a combination of Chronic sinusitis and GERD. I have even published an article on Medium about this, called Living with Chronic Sinusitis, GERD, and Asthma. in which I described my symptoms and what medical help I was receiving. I have also previously published and article on HubPages called “What is Really Wrong With Me?” in which I shared my thoughts and feelings of not being able to have received any help with these conditions. I really had hoped that by publishing these articles someone would comment about how they had found something to help them, if they were suffering from the same conditions.

…no idea what I was talking about…

 I have seen a number of doctors here in the US and in Malaysia (where I lived for 7 years), who had no idea what I was talking about and even shrugged off my complaints. The only diagnoses I have gotten were either GERD or Chronic Sinusitis with associated asthma symptoms. COPD was ruled out, even though I have been prescribed COPD medications, which did not help. I have tried every inhaler and nasal spray on the market, with no results. Because I could not get any answers from my doctors I began visiting numerous Health Forums related to respiratory or breathing problems. On these forums I found large numbers of people suffering from the same maladies as I have been suffering for years. I have spent hours reading the their accounts of their symptoms and what they have done to alleviate them. Some of them have tried the same medications that I have tried and were helped; while others were not. The consensus was that most, if not all, of these people have been suffering, sometimes for years, but have not gotten any real relief. It is very discouraging for me and I’m sure for everyone else not to be able to get some sort of relief, so that we may be able to live normal lives.

…“learn to live with it”…

 What really makes me mad is that every once and a while a doctor will reply to some of the patients sharing their symptoms, telling them to contact their physician! What the hell do they think we have been doing all these years? On some of these health forums the patients actually pay for an online consultation and share the results on the forum. Once again they were told to contact their physicians. What kind of morons are these doctors that they don’t listen to what is being said? For years we all have been going to our physicians and hearing the same thing over and over, before we’re told to “learn to live with it” or some other asinine excuse for not knowing what is wrong!

Forgive me for sounding off,…

 I’m not complaining about these forums, on the contrary, I am grateful to them for the support they offer me and thousands of other people. I just can’t understand that after all of the forum posts, over a period of years ,why there has not been one single healthcare professional who has offered some consolation or other ray of hope. Forgive me for sounding off, but I am becoming very frustrated with my health problems and the way our healthcare system works, or more correctly, doesn’t work.

I’m Struggling to Breathe

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For about 12 years now I have had a continuing problem with shortness of breath. I am particularly effected by changes in weather, especially changes in the barometric pressure and humidity rather than certain allergens. I become short of breath when I exercise or whenever I am outside after the sun sets and even when I get upset. Before I begin having difficulty breathing my sinuses begin to drain and my post nasal drip increases dramatically. I can actually feel my nasal passages constrict and well as my airways. I have had post nasal drip 24/7 for about 12 years. Approximately 10 years ago I underwent sinus surgery which was excruciating and did absolutely nothing to alleviate any of my symptoms. Presently my sinus CT scans show no abnormalities and my lungs are clear. I have used every kind of inhaler that is on the market, but with no success.

All because I have to struggle to breathe.

I love the outdoors, especially the mountains and forests, but I can no longer walk through the woods and enjoy the scenery, because I have to struggle to breathe after only a few minutes being among the trees. I believe it’s the humidity in the woods since I have tested negative for tree allergens. I would love to ride a bicycle around my neighborhood and play catch with the kids next door, but I can’t. My days of playing tennis are over and running up and down the stairs are out of the question. All because I have to struggle to breathe and no one knows why.

…she pooh poohed my assertion…

 I have been to numerous doctors in Boston, Penang, Malaysia and Rochester, NY. Each of them have said I have asthma. I was referred to a cardiologist who “guaranteed” that my shortness of breath was due to anemia. He did a blood test which proved him wrong. I then underwent stress tests, ECG’s and echocardiograms that showed nothing abnormal . He surmised my shortness of breath was attributed to asthma. I’ve heard that before! I was referred to an allergist who tested me for a variety of allergens, all of which were negative. I tried to explain to her that the weather caused my breathing problems, but she pooh poohed my assertion, even as I had an attack as a sudden thunderstorm went through the area. After trying a variety of inhalers and steroids, which constantly made me dizzy, and scheduling a pulmonary function test, which showed asthma, she quit scheduling any more appointments. Her office said that they have no record of me ever being there! Needless to say I gave up on her, as she gave up on me!

He also told me not to expect that doctors know everything!

 I was then referred to an ENT specialist who was the most honest yet. After examining my sinuses and CT scans he admitted that there was nothing wrong with my sinuses and he had no idea what was causing my asthma. He also told me not to expect that doctors know everything! I was happy that he was honest with me and didn’t offer false hopes or wanted me to keep coming for appointments which would be both a waste of money and a waste of his and my time.

She evidently was absent the day “bedside manners” were taught…

Next I went to a pulmonologist, who was the most useless yet! I paid a $50 co-pay and $125 for the tech to take an inhaler out of the package to show me how to use it! As if I didn’t know anything after 12 years of inhaler use! She arrogantly told me I had asthma and her treatment was to suggest I continue using my inhalers! I refused to make another appointment with her as she had nothing to offer and appeared not to really care. She evidently was absent the day “bedside manners” were taught or she flunked that exam! It doesn’t take a specialist to tell me to continue to take my medications that doesn’t work!

…I realized that for the first time I was breathing easier.

From this sad excuse for a doctor I went to see an asthma specialist at a well known asthma and allergy clinic, which had an excellent reputation among medical professionals in my area. I was given a spirometry test followed by a nebulizer treatment and an oral medication. My consultation and treatment took over three hours and offered me some hope. The doctor appeared to be genuinely interested and assured me that he could help me breathe again, and if he didn’t he wouldn’t keep me coming to give me false expectations. When I left his office and drove home I realized that for the first time I was breathing easier. I hoped it would last.

 He told me he was not satisfied with my progress…

I saw the asthma specialist twice, but I did speak with him on the phone numerous times. I had some relief with some of the medications he prescribed, while one of the drugs severely worsened my condition. It was interesting that one of the drugs he prescribed was one I had taken as a child for my severe asthma. It worked then so he wanted to see if it would work again and it did, even though it is very difficult to get as it is seldom used today. In my last telephone conversation with him I learned that he had referred me to another pulmonologist, who specialized in asthma/COPD patients who did not respond to treatment. He told me he was not satisfied with my progress and wanted me to see someone with more expertise. Next month the saga continues!

I’m sure whatever it will be it will be way too expensive and I won’t be able to afford it!

Every time I see another specialist I have to start from the beginning to explain my symptoms and how long I’ve had them and who I’ve seen. I feel like I should make a recording to play each time I see a new doctor! I can’t imagine what medication he will prescribe next, as I think I’ve tried every drug on the market. I’m sure whatever it will be it will be way too expensive and I won’t be able to afford it! In the meantime I am researching natural supplements, as to their effectiveness and affordability. I am not holding out too much hope for my next adventure with this specialist, but I am not quite ready to give up either. To be continued…

How does that make you feel?

The high cost of breathing

 

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Are you, like me, and millions of other Americans suffering from asthma, or COPD or both and need to use an inhaler every day? You know what it is like to struggle to catch your breath while doing the simplest of everyday tasks. Sometimes just taking a shower and getting dressed in the morning leaves you as breathless as if you had been running the bases in a baseball game in your youth.

You tend to collect everything that needs to be taken upstairs on the stairs…

If you live in a two-story home you know how it is when you know you have to climb the stairs to put the laundry away or clean the bedrooms. You tend to collect everything that needs to be taken upstairs on the stairs, so as to limit the number of trips you have to make. If you have a basement you literally have to plan your chores as to avoid going down to the basement to get something that needs to be taken up to the second floor or vice versa.

…it seems to take forever to do the simplest tasks…

Outside of your home, you dread having to mow the lawn on hot and humid days and forget raking leaves in the fall! You love to work in your vegetable garden, but it seems to take forever to do the simplest tasks, as you have to stop to rest after each little action. Taking the trash out on cool nights seems like running a marathon at times, but it has to be done. You dread walking the dog even though you know it’s a good exercise for both you and the dog, but you hope he doesn’t walk too fast. You look at your neighbors riding their bicycles around the neighborhood and wish you could do the same, as they smile and wave to you.

…you secretly worry that there are not too many flights of stairs to challenge your breathing.

When friends invite you to go to a public event such as a hockey game, basketball game or concert you secretly worry that there are not too many flights of stairs to challenge your breathing. At least going to the mall is easier, if everything is on the same level or there are escalators. If you have to fly for vacations or family visits you have to make sure you have enough time to make connecting flights, so you are not forced to run from gate to gate.

You feel inadequate and feel as though you are not a whole functioning human being.

You know what it is like not being able to breathe like you once did in your youth, or maybe you are young and have never been able to breathe normally. Not being able to breathe adequately is annoying and extremely depressing. You feel inadequate and feel as though you are not a whole functioning human being. If you smoked in the past you also have feelings of guilt and anger. Why do some former or present smokers not have any breathing problems, when you do? With all of the above feelings you have another feeling, one of dependence. You are dependent upon inhalers to enable you to breathe a little better, hopefully.

You have to have no insurance and no money.

Thank God asthma and COPD sufferers have inhalers which can greatly improve our lives. Too bad we live in the Unites States though! That’s right! did you know that inhalers in other countries cost a fraction of what they do in this country? In Asia and Europe they may cost anywhere from 1/3 to 1/10 of the cost in the U.S.! (When I lived in Malaysia I paid $9 for my inhaler and now it’s $45.) How does that make you feel? Sure, ads for certain inhalers that offer $5or $10 monthly payments for eligible patients are everywhere on television or in magazines, but read the eligibility requirements found in the fine print. If you are covered by Medicare or Medicaid or other governmental programs you do not qualify! You have to have no insurance and no money.

The answer is greed!

How does it make you feel when you see ads for inhalers that offer hope in being able to breathe normally and then find out there is no way you can afford them? My pulmonologist says that most of his asthma and COPD patients cannot afford their medication and many go without. How does this happen in the richest country in the world? The answer is greed! A few years ago inhalers were affordable to most people but this all changed when the EPA banned CFCs (chlorofluorocarbons) which were propellants used in inhalers, because they damaged the environment. The CFCs were then replaced by a new propellant, HFA ( hydrofluoroalkane). Because of this change in propellants, the pharmaceutical companies were able to re-patent their inhalers, thus drastically raising their price and assuring that they would continue to reap high profits for years to come! These newly reinvented inhalers, as well as all new inhalers now have patents that will not expire for another 20 years!

Our own FDA chose to aid big pharma’s profits…

For many of inhalers we use there are generic brands available, but not in the United States. Asia and Europe offer these generics and also brand named inhalers without the new propellants and that is why they are so much cheaper. Our own FDA chose to aid big pharma’s profits, rather than alleviating the suffering of our own citizens! How does that make you feel? Oh yeah, how about all of those drug ads you see on television, in the newspapers and in magazines? Who’s paying for all of those ads? You are, in the price of the drugs! How does that make you feel?

How about you?

Will things ever change for all of us who suffer from respiratory diseases? Probably not, at least not in my shortened lifetime. Things won’t change in this country until it is not possible for our politicians to be owned by big pharma and we have some kind of universal health care, like the rest of the civilized world. According to Opensecrets.org. big pharma donated over $25 million in 2018. That money was to purchase members of Congress, from both parties, to protect their profits and keep our drug prices high. Election after election our politicians promise to do something about the high cost of drugs, but nothing is ever done. And Americans continue to vote for the same lying politicians enriching themselves from big pharmacy at the expense of our failing health. That makes me feel sick and angry! How about you?

Do Internet Health Forums Ever Help Anyone?

en.wikipedia.org

    For many years I have suffered from breathing problems related to a combination of Chronic sinusitis and GERD. I have even published a couple of articles on HubPages about this. The first one was called "The Scourge of Chronic Sinusitis and GERD Combination"in which I described my symptoms and what medical help I was receiving. Four years later I published another article called "What is Really Wrong With Me?" in which I shared my my thoughts and feelings of not being able to have received any help with these conditions. I really had hoped that by publishing these articles someone would comment about how they had found something to help them, if they were suffering from the same conditions.

    I have seen a number of doctors here in the US and in Malaysia, who had no idea what I was talking about and even shrugged off my complaints.  The only diagnoses I have gotten were either GERD or Chronic Sinusitis with associated asthma symptoms. COPD was ruled out, even though I have been prescribed with COPD medications, which did not help. I have tried every inhaler and nasal spray that is on the market, with no results. Because I could not get any answers from my doctors I began visiting numerous Health Forums related to respiratory or breathing problems. On these forums I found large numbers of people suffering from the same maladies as I have been suffering with.  I have spent hours reading the accounts of their symptoms and what they have done to alleviate them.  Some of them have tried the same medications that I have tried and were helped; while others were not. The consensus was that most, if not all, of these people have been suffering, sometimes for years, but have not gotten any real relief. It is very discouraging for me and I'm sure for everyone else not to be able to get some sort of relief so that we may be able to live a normal life.

    What really makes me mad is that every once and a while a doctor will reply to some of the patients sharing their symptoms, telling them to contact their physician! On some of these health forums the patients actually pay for a online consultation and share the results on the forum. Once again they were told to contact their physicians. What kind of morons are these doctors that they don't listen to what is being said? For years we all have been going to our physicians and hearing the same thing over and over, before we're told to "learn to live with it" or some other asinine excuse for not knowing what is wrong!

    I'm not complaining about these forums, on the contrary, I am grateful to them for the support they offer me and thousands of other people. I just can't understand that after all of the forum posts over a period of years why there has not been one single healthcare professional who has offered some consolation or other ray of hope.