Now I have basically always had dogs in my life. So, I would definitely consider myself a dog person and not a cat person although I did have one cat that I rescued out of the snow as a kitten who was the sweetest animal in the world. Last October my chocolate lab, Herschel started coughing so I took him to the vet. At first they thought it was just allergies but a few days later it was much worse. I took him back to the vet and after series of blood tests and x-rays they determined that he had a fungal infection in his lungs. A week later he was coughing up blood and early one morning I awoke to him dragging himself across the floor as his back legs quit working. By the time we got him to the vet, he was gone. Now this absolutely broke my heart. He was my baby. We rescued him when he was about six months old and he was only seven years old when he died.
I am a big proponent of pet adoption / rescue. Almost every dog I have ever had has fallen into one of these categories. Our puggle we have is thirteen years old and her mother was rescued from a puppy mill and Savanah was born in the shelter and I adopted her as a new puppy. So in November of last year I was trying to decide; do I get another puppy or do I wait for a while. Well two friends of ours showed us their English Labs that they had gotten from Hickory Nut Kennels in North Alabama and they were beautiful. So, for th first time I got a puppy from a breeder. One of our friends who has a black lab from HNK, we did a little research and found out the ours and theirs were cousins.
I can tell you from personal experience that having a puppy in your life can be one of the most healing things you can do. It gives you something to instead of focusing on what’s wrong in your life or what you can no longer do. You literally have to pay attention to them every hour. Between crate training, potty training, general training, play time and snuggle time, they take a lot of time and attention.
If you are home bound because of a disability or because of Covid-19, having a puppy that requires a lot of attention, training, play and snuggles is one of the best things you can do for your mental health. According to a study published in Time Magazine, dogs are more than just cuddly companions — research continues to show that pets bring real health benefits to their owners.
And researchers have also shown that dog owners are more active than those who don’t own dogs, packing in more steps per day on their walks or just regular playtime. Last month, a study showed that older dog owners take 2,760 more steps per day on average compared to non-owners, which amounted to an additional 23 daily minutes of moderate exercise.
In a time of loneliness and isolation, a dog can provide something to keep you busy, active and provide a source of unconditional love. I know that my new puppy, Alonso, has given me hours of love and affection as well as training and play time outside. Yes, you have to deal with getting up in the middle of the night to let them out and they will have occasional accidents in the house, it is so worth it. It is one of the best things I have done for my mental health in a long time.
If you are lonely, isolated, home bound because of a disability, consider getting a dog. They can change your life.
So I take 26 pills/Injections every day. Now this may sound excessive but this is what it takes to keep me running. Some of them are preventative drugs and some are necessary. Although these drugs keep me alive, I have to wonder what they are doing to me long term. Methotrexate, for example, is a low dose chemotherapy drug, eight of the medications are just to promote sleep. If I could sleep, it might just take care of other issues.
Some times I wonder what I would do if I didn’t have good medical insurance. There would be no way I could afford my medications. This is why I believe there needs to be some major changes to our current healthcare system. My brother, for example, is self employed and has only a discount card for his prescriptions. One of the medications he needs costs $1,200 per month (it’s only $400 per month in Canada) so he just goes without the medication he needs. I have excellent medical insurance and I still spend around $20,000 per year in healthcare costs. I don’t know what the answer is. A single-payer system or Medicare for all sound nice but how in the world do they get paid for? Even with all of the technology, the US is consistently ranked near the bottom for healthcare. I will leave that discussion for another day.
A few weeks ago, when I was in the hospital, they refused to give me all of my meds for fear of liability. Some would say that the sleep cocktail I am on is dangerous but without it, I literally don’t sleep at all. At least now, I get one to four hours per night and none only one or two nights per week. Now there are a lot of side effects to these medications. Some cause weight gain, dry mouth, nausea. I am currently on a forty five day course of IV Rocephin which I take twenty-four hours aa day through a picc line. There are days that I can barely eat because the Rocephin wreaks havoc on my stomach.
I really wish I could find a natural and holistic method in treating the issues that I have so that I can cut way back on the medications that I take. If you are like me and you take handfuls of pills everyday, let me know if you have found alternative treatments that are effective. I’m especially interested to know if you have found anything truly effective on chronic insomnia. I feel like if I could get that resolved, I could reduce my medications by almost 50%. All these chemicals that we are putting into our bodies everyday can’t be good for anyone long term. Although I am always amazed at the advances in modern medicine, we just don’t know everything.
I’ve tried meditation, acupuncture, hypnosis, etc. I have searched for years for more natural ways to treat the issues I have but what I know is that there is no panacea out there, Everybody and their brother is part of some sort of multi-level marketing program that sells the cure to everything so I have become extremely skeptical about what I see out there. I even went to a Naturalpath but that was about as useful as a sixth toe. People spend thousands on natural remedies that aren’t effective at all. Someone even told me I needed to go to their Chiropractor because he could make certain adjustments that wold cure my diabetes. So one of these days, someone will discover a natural cure for certain diseases but until then I guess I am relegated to taking handfuls os pills everyday.
If you would have asked me seven years ago if I would be sitting at home writing a blog about living with disabilities, I would have told you that you were nuts. I was in the best shape of my life, running six miles a day, running half marathons, training for my first half Ironman. In what seemed like an instant cascade of events, the proverbial carpet was yanked out from under my feet. Now I’m not going to go into all the details because if you have read my blog, you have read about what I have going on.
Now what hit me harder than anything that I had dealt with, which has been a lot, came last November. I remember it as clearly as if it happened yesterday. I was sitting in a board meeting when my neurologist called. “Mason, we have the results of your DATscan. It is abnormal. Between that and your symptoms, you have Early Onset Parkinson’s Disease.” Say what! You mean the disease I watched ravage my dad, I have? I had to excuse myself from the board meeting. I couldn’t focus. I couldn’t think. I was only 47 years old. How could I have this disease?
According to psychcentral.com, The 5 Stages of Grief & Loss are 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them. The stages of grief and mourning are universal and are experienced by people from all walks of life, across many cultures. Mourning occurs in response to an individual’s own terminal illness, the loss of a close relationship, or to the death of a valued being, human, or animal. There are five stages of grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying.
So I started doing research and reading everything I could. I joined several online support groups and found a local support group that meets monthly. I wanted to know everything I could about this disease. How long did I have to live? What symptoms could I expect? There were just so many unknowns. A good friend of mine who also has PD gave me some very wise advice. He said “you cannot think about what your life will eventually be like. Just worry about tomorrow, not ten years from now and get busy living TODAY.” This was very difficult for me. I knew what this disease could do. My dad died a horrible death. He was unable to swallow, eat, drink, or even talk. He couldn’t sleep, walk, or even speak at the end. Was this my fate? One thing I was told over and over again was that PD affects everyone very differently and symptoms can be very different from person to person. This did give me some relief.
To say that I have dealt with this diagnosis would be a lie but I am working on it. Every day I learn a bit more. I have seen people react very differently to this diagnosis. Some live in denial (me somewhat) and some change their entire lives. They put everything into their diet, exercise, and every part of their daily routine. I’m a little slower getting there. I have the passion to do it but circumstances have prevented me from making some of the changes I need to make.
One thing that I feel very grateful for is the support structure I have. Between my friends and family, I have a lot of people in my corner fighting with me. It has made the acceptance of this diagnosis much easier. If you don’t have close family to support you, find a support group and get connected that way. Just talking to others with this disease has a healing effect emotionally.
At first, I wanted to blame God. How could He do this to me? How is this just? Then I was reminded of verse in Romans that says this, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28 (ESV). I was reminded that God has a plan for my life and there were others that had a much more difficult than me. I had been having a grand pity party and I needed to get over it. I then needed to figure out how I could use my circumstances to help others. To get through the terrible symptoms of this disease that I was already suffering from: the tremors, depression, chronic insomnia, falling to name a few. This was an opportunity for me to serve others.
If you have been diagnosed with PD and are looking for more information, please go to my Resources page and look through the sources I have provided. Stay strong my PD warriors and keep fighting. There is more and more research happening ever day that could soon lead to a cure.
According to the Cleveland Clinic, chronic pain is defined as pain that is ongoing and usually lasts longer than six months. This type of pain can continue even after the injury or illness that caused it has healed or gone away.
If you occasionally have pain that can be taken away with a dose of Tylenol or lasts for a day or two, you do not suffer from chronic pain. There is a pain scale of 1 to 10. One being the least and ten being the worst. On a good day, I am a 7. On most days, I live at an 8. This is with pain killers. It is, in fact, a pretty miserable existence. I go to a pain clinic once a month and they give me the minimum amount of meds they can because of regulations. It’s not their fault, there is so much opioid abuse, the regulations have gotten pretty strict.
For those of you out there dealing with the same thing you understand what I am talking about. You live every day in agony and there seems to be no one that can seem to do anything about it. Your cognition is diminished, your memory is weak. A combination of pain and pain meds blurs everything and normal daily function is hard to find. I’ve tried to go back to school but I struggle to do tasks that used to be easy for me. I have a very high IQ but when you add pain and pain meds to the mix, I find that it is diminished. It is one of the most frustrating things I deal with on a daily basis.
I’ve tried every kind of medication, natural remedy, acupuncture, hypnosis and everything you can think of that is legal. If you suffer from chronic pain you know this feeling. You pray for relief but it never seems to come. It affects every part of your life; your sleep, your decision making, your job, and everything else. Chronic pain can be extra frustrating if there is no apparent cause or you have had surgical procedures that were supposed to fix your pain but only made it worse. I have had seven surgeries on my neck and back including three fusions. I was hoping these surgeries would relieve my symptoms but they did not. I also have Rheumatoid Arthritis and Early Onset Parkinson’s Disease; all of which contribute to my pain.
According to www.uspainfoundation.org, typically, pain is considered chronic when it persists for six months or more. But for some patients, chronic pain can last for years or even a lifetime. There are many possible causes for long-term pain, including injury, such as involvement in a car accident, or underlying disorders or diseases, like fibromyalgia or arthritis.
The type of pain experienced can be as varied as the reasons behind it. Pain can be felt as burning, stabbing, aching, pulsing, and many other sensations. These sensations can occur anywhere in the body, and can range from mild to severe, from intermittent to continuous, and from distracting to disabling. Over time, chronic pain can become a disease in and of itself, creating notable changes in the body, particularly the nervous system. Because each individual person with pain is so unique, it can be challenging to manage pain effectively. There is no one-size-fits-all approach to treatment, and pain management is usually aimed at reducing pain, not eliminating it. Working alongside health care providers, most people with pain will need to engage in a process of trial and error to find a treatment plan that works for them. Typically, successful pain management requires finding a combination of multidisciplinary, multimodal therapies that reduce pain enough to improve quality of life and increase function. There is good information on this website including a pamphlet you can download about dealing with chronic pain.
One of the most difficult aspects about living with chronic pain is trying to get your friends and loved ones to understand what you are dealing with. It’s hard to describe what you are dealing with and how it affects daily life. Having a strong support structure is critical in living with chronic pain. Without that, it can be a very lonely existence.
Finding the right pain doctor is also critical. It’s a balancing act between too much, where you live in a narcotic induced fog and not enough, where you are suffering all of the time. One of my brothers who passed away earlier this year was on so much pain medication, there were days he could barely have a conversation. Then there is my experience where I have gone from one doctor who had me on Fentanyl and Oxycodone to my new doctor who only has me on Oxycodone. Somewhere in the middle is where I need to be. Here in lies the problem. In one of my previous posts “I Am Not a Junkie”, I talked about how difficult it is telling your doctor what you a really going through in fear of being labeled a pill seeker. The opioid crisis in the country has made doctors very weary in prescribing pain medication. My insurance company just signed me up for a service called 2ndMD which is a service where specialists give second opinions and help you find a provider that will treat you the way you need. In the town that I live in, there only a handful of pain clinics available. I was at one where I saw the doctor once and was treated like cattle the rest of my visits and then there is the doctor I see now, who is seeing patients via telehealth right now and my last appointment lasted a minute and a half.
I know people who are just starting on this journey and I know people that have been dealing with chronic pain for more than twenty years. I am convinced that there has to be a holistic approach to pain management. I think you need to treat the mind, body, and soul to effectively treat pain. I believe in including a combination of cognitive therapy, medication, and state of mind in the treatment of pain. If you don’t treat all three, I don’t believe there can ever be true healing. The state of mind, or soul, is the hardest, as we all have different belief systems. Although I have not found a good medication balance, I am at peace with my soul and I have had good luck with therapy.
The biggest challenge I face right now is getting treatment during the Covid-19 pandemic. Psychologists have basically shut their doors; it’s nearly impossible to get in to see a new doctor so I know that people are really suffering these last few months. I have found an outlet by writing about my experiences but that doesn’t relieve my physical pain. I take pain medication but it barely puts a dent in my pain. If I could get to a six on the pain scale, which is still a great deal of pain for most, I would be very happy. Know that if you are suffering, you are not alone. According to the Mayo Clinic, there are nearly three million new cases of chronic pain diagnosed each year. So, until things get back to normal, stay safe, stay healthy, and search for peace amidst your suffering.
According to Dictionary.com, depression is defined as a condition of general emotional dejection and withdrawal; sadness greater and more prolonged than that warranted by any objective reason.
More than 3 million cases per year of of clinical depression are treated but it is a disease that people don’t want to talk about. There is a stigma associated with depression that shrouds the disease in shame that prevents many people from talking about it or admitting they suffer from it. Untreated depression kills many Americans every year. On March 25, 2001, my brother who suffered from untreated depression took his own life, so I am all too familiar with the deadly effects that it can produce. It was one of the most devastating events in my life. At the time I didn’t have a good understanding of mental illness and the impact it has on an individual. What did I do wrong? Did I fail him somehow? These are questions I struggled with for years. Two things I have learned since that time are Suicide is almost NEVER a selfish act (nothing makes me angrier than someone saying how selfish it is) and someone suffering from untreated clinical depression can be in such a dark and hopeless place that suicide can seem like the only way out; the only hope.
According to the Anxiety and Depression Association of America:
Anxiety disorders are the most common mental illness in the U.S., affecting 40 million adults in the United States age 18 and older, or 18.1% of the population every year.
Anxiety disorders are highly treatable, yet only 36.9% of those suffering receive treatment.
People with an anxiety disorder are three to five times more likely to go to the doctor and six times more likely to be hospitalized for psychiatric disorders than those who do not suffer from anxiety disorders.
Anxiety disorders develop from a complex set of risk factors, including genetics, brain chemistry, personality, and life events.
I have many friends and family members that suffer from depression and anxiety. When you see someone you care about that is suffering, it is one of the most helpless feelings. One of the key symptoms of depression is a lack of hope. It seems as though there is nothing to live for. Now I don’t mean to suggest that all people that suffer from depression are suicidal. That is not what I mean here. What I mean is that when there is a lack of hope, there is a sense that nothing in this world has any significant meaning and there is no motivation to do the things that once were enjoyed. Depression is not logical or rational. Two of the primary causes for depression are chemical imbalance in the brain and how we respond to many major life events. Now I am not a psychologist but this comes from years of reading on the subject and my own personal experiences. The chemical, for example, can be affected by many things such as a lack of dopamine in a Parkinson’s patient and serotonin imbalances in someone who suffers from chronic pain. How we respond to major life events is yet another influencing factor. Now you can have two people who react to the exact same situation in completely different manners so as a friend of mine pointed out Epictetus said that it wasn’t the thing that bothers a man but how the man thinks about the thing.
One of the most common symptoms of Parkinson’s Disease is depression. For years I have suffered from depression. I have tried dozens of medications and I have just now found a medication regimen that is somewhat effective. Now one thing I do feel strongly about is that just medication is not the answer. I believe an important component, if not the most important, is cognitive therapy. It is so important to talk to a trained professional on how one deals with major life events, one’s belief system and the understanding one’s true identity.
Spirituality, which is part of my belief system and one of the factors that affects mood may not be a very popular subject but I believe that my faith in God gives me a sense of hope that lifts my spirits. Romans 15:13 (ESV): 13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. I believe that the spiritual component of one’;s belief system has a major role in depression.
Because I have become so passionate about this subject, I have gone back to school and I am working on a Masters in Counseling. Since I am on disability, I am not working on a second career but there is a lot of people I can help through volunteer work. If you are suffering from depression and you are not getting help, please do. If you are unsure if you are suffering from depression, go to https://screening.mhanational.org/screening-tools/depression and take the screening test to see. On the resources page on the website there are links where you can get help. If you feel like you might’ve suffering from depression, see your Primary Care Physician as soon as possible. Don’t suffer needlessly; help is out there and there is hope.
Insomnia is defined as “The inability to obtain sufficient sleep, especially when chronic; difficulty in falling or staying asleep; sleeplessness. – Dictionary.com
What this definition doesn’t explain is the length and breadth of the insomnia. It doesn’t define what physical affects it has on your body and mind. When someone says to me they had a bad nights sleep and they only slept six hours instead of their normal eight, I explain that is not insomnia. Going months or years either not sleeping at all or only a couple hours a night, that’s insomnia.
I take six different sleeping meds every night to sleep and I am writing this at 1:00 in the morning. So I got a good two hours of sleep this morning. You can only do this for a couple of days before it begins to affect you physically. My tremors get worse, my cognition is worse, I have no desire or energy to do anything during the day. It causes depression, it takes away your desire for the things in life you used to enjoy.
Now imagine dealing with this for years. If you let it, it can literally suck the joy out of every aspect of life. I have yet to find a doctor that can provide any productive treatment. I’ve tried every medication out there, acupuncture and even hypnosis. You name it, I’ve tried it. I don’t know what causes it. It could be a symptom of Parkinson’s or a myriad of other things. I don’t know. My brother suffers from the exact same thing. He has found a medication that works for him but is so expensive (over $1,200 per month) he has to ration it so he sleeps maybe one or two days per week. He doesn’t have good prescription coverage because he is self employed (a topic for another day).
With chronic insomnia being a medical condition, it amazes me that it is so hard to find a medical professional that treats this condition. There are plenty of sleep clinics but they primarily deal with things like sleep apnea. At one point I found a physiatrist who specialized in sleep disorders but he left his practice and I have never been able to find a replacement. At this point I would go anywhere in the country to get treated if I could find someone who could give me an effective treatment
So here I sit at 4:00 in the morning. I’m exhausted and I know I will be for the rest of the day but I know that each day brings a certain joy that I cannot explain. I have hope. I have hope for those one or two days a month where I somehow get a full nights sleep. I don’t know when they will come but I have hope that they will. If you are dealing with the same thing, I would love to hear from you.
In what is probably the most uncertain time in our generation, it is sometimes very difficult to stop and think about what we are grateful for in our lives. Whether you are dealing with a health crisis, a financial crisis, or just general anxiety over the state of affairs that we are facing right now, feeling grateful is sometimes at the bottom of the list. For your own well-being, however, it should be at the top of your list. Now you could say “you don’t know how bad it’s been these last four months”, but I would venture to guess that someone out there has had it worse than you have. The key to finding joy during these difficult times is gratitude.
One of the more pleasant symptoms of Parkinson’s is chronic insomnia, so despite the handful of drugs I take at night to get me to sleep, I usually get to sleep around midnight and am up by 2:00 or 3:00 in the morning. I used to sit there feeling sorry for myself and asking God “why me”. About eight weeks ago I decided that a paradigm shift was in order and instead of focusing on the things that I have lost, I would focus on what I had. It has been one of the best mental exercises I have ever ventured to take.
For those of you that don’t know my story, I will share a bit of what I have been through. Over the last thirty years I have had eighteen surgeries; twelve of those over the last eight years. I have been diagnosed with Type 1.5 Diabetes and have to wear an insulin pump, Rheumatoid Arthritis, Degenerative Disc Disease, May-Thurner Syndrome and Early Onset Parkinson’s Disease. Just two weeks ago I was in the hospital for eight days with staph pneumonia and staph in my bloodstream. Two years ago, I had to go on disability because I was in so much pain I was unable to work anymore. I probably spend an average of $20,000 a year on medical expenses. That’s just a cursory overview. I could write pages on everything that I have to deal with on a daily basis but that is for a different day.
You might say I have every right to be bitter, but I am not. I decided that I was going to be grateful for what I did have. We are given so much in this life that we take for granted and one of the best things we can do for ourselves, mentally and emotionally, is to have a heart of gratitude. Now, every morning, I contemplate on the blessings I have in my life; my family, my friends, my life. You might even try and find the little things in life that you can be grateful for like the companionship of a pet, a hot cup of coffee in the morning, a beautiful blue sky. When you really look for things, even the small things, you can find things to be grateful for. You might think you have nothing to be grateful for but if you really put some thought into it, you will find that you do. Contemplate on those things instead of the negative things and before long, you will have a new outlook on life. It will be one of the best things that you will ever do.
Whether you believe in a personal God or not, and I do, I believe going through the difficult times in life builds character. I have a friend of mine that was just diagnosed with Hodgkin’s Lymphoma. Her tumor is inoperable so chemotherapy seems to be the only course of treatment. Now you might ask how could someone like that be grateful but her faith and attitude are inspiring. I watched my dad die due to complications of Parkinson’s so I know the miserable fate that awaits me. What gets me from one day to the next is my faith in God and an attitude of gratefulness of the blessings that I have. If this is something that you have never done, trust me, it will change your perspective on life even during these trying times.
This is how I feel like people see me every time I walk through the doors of the pain clinic. This is how they make you feel if you go to the emergency room, the hospital, or anywhere you have to explain that you live in chronic pain. You would think at a pain clinic or a hospital they would be more compassionate but opioid abuse has become such a problem in the US, it forces them to be skeptical of anyone saying they are in pain. They ask you to describe your pain on a scale of 1 to 10. You would think when someone says 7 or 8 they would say “hmm, maybe we need to do something more for this person than what we are actually doing” but alas, they do not. They say “well, it looks like your pain medication is working. See you next month.”
I know this is not isolated to my experiences as everyone I have ever talked to that is in pain management feels the same way. As a patient, we are afraid to say “what you are giving me is not sufficient as I am still at an 8” because if you do, you know you are going to get “the look”. That quizzical eye that all but screams “ATTENTION EVERYONE, THERE IS ANOTHER JUNKIE IN MY OFFICE”. What it should be instead is “what can we do as doctors to alleviate your pain and make life more manageable?” This pervasive attitude is not isolated to the pain clinic I go to now. This is the third pain clinic I have been to over the years and it is the same at all of them.
Now, I try to see things from their perspective as well. There are a lot of drug seekers out there who just want their next fix so doctors have to be extra cautious. This is very frustrating as it makes it that much more difficult for those of us truly suffering to get the medication needed. There is also a balancing act that the doctors have to play. Too much and you create a zombie addict and not enough you leave your patient in agonizing pain. Before my brother passed earlier this year, he was on so many pain meds that some days he could barely function. His back was nothing but rods, screws and fusions and he was in constant pain but even I will admit that I wondered if he was on too many pain meds. I don’t think that any doctor out there wants their patient to suffer needlessly but they also don’t want to be the one that creates an addict. They also don’t want to be the doctor who was treating Prince, Michael Jackson, or Tom Petty.
Over the years, I have had eighteen surgeries and I live at a seven to eight on the pain scale every waking moment. This makes it very challenging to do anything productive but this doesn’t mean I’m not going to try. My choice now is do I find a different doctor (I would rather not as I like my current doctor), do I just stick it out and hope for the best, or do I speak up and say “doc, I’m not a junkie but I am in constant pain” and hope I don’t get thrown out on my ear. Getting tossed from a pain clinic brings a whole host of problems. The worst of which is no one else will touch you because you have now have been labeled as a junkie or a pill seeker. See the quandary?
Through my insurance provider I have a nurse advocate that calls me every three to four weeks just to check in on me. I posed this problem to her to see what advice she might have and what she would do. She told me I should stand up for myself and tell the doctor exactly what was going on, how much pain I was in. She told me that if I was unwilling to do it, she would do it for me. However, my last three appointments have been telehealth appointments due to the pandemic and they have lasted an average of one minute twenty seconds so I have not had much of an opportunity to really bring anything up. I have barely had enough time to say hello before the call is over. Hopefully my July appointment will be in person and I can have a candid conversation with my doctor.
One of the hardest things people who live in chronic pain have to deal with is if they do not have a solid support structure in place. I have heard numerous times that a person’s significant other does not understand them. It can be so frustrating if the people around you cannot understand what you are going through. I will admit that I have some friends that are like “dude, take some Tylenol, that works for me”. The reality is you are going to have people in your life that do not understand. One thing you will find, however, is if you do share your story with your friends and loved ones, you will be surprised how many of them do get it and will be there for you. I am so lucky that I have a spouse and close friends who, at the very least, try and understand what I am going through and are there to love and support me.
If you are reading this and you suffer from chronic pain, you are not alone. Whatever you do, don’t give up hope that there is a solution for you. I know it can seem as though there is nothing on the horizon but more pain and misery but I am convinced the right doctor is out there; one that is compassionate to your suffering and discerning enough to know your pain is real. I am sure you are like me and you want your life to be full and you would give anything for a single day without pain. I am convinced that day will come. For now, hang on, make sure you have a support structure in place and know that you are loved.
When you simplify some of mankind’s basic desires, one of them if Fullfilment. We want to feel like we are contributing something to society. When all of a sudden you don’t have the ability to do that, there is a gaping hole in the persona. Now I will grant you there are always exceptions and there are those that are perfectly content contributing absolutely nothing but I have to believe they are in the minority.
When someone goes on disability, gets furloughed/laid off, etc. all of a sudden several things are happening at once that you are having to deal with. What do I do now for income? Am I somehow viewed as expendable? Do I not bring value and worth to my employer? But the most difficult question of all is what does my family think of me? It is very important to the male psyche to feel they are a valued contributor to theIr family. When that feeling goes away, the effects can be catastrophic and lead to hopelessness, depression and a loss of confidence.Depending on what your plans are and your individual situation, the primary thing I would recommend you do is simply stay busy.
If you have been furloughed and you have a date where you will be returning too work, use this time to get some much needed projects done around the house. You will find it very cathartic and it will be greatly appreciated. If you think there is a possibility that you are going to have to sell your house, these kind of projects that give you the best value for your time. If you are not selling your house, it can provide a much needed cathartic outlet in working off excess energy and angst. Some things to definitely avoid are too much time on the internet (Facebook will melt your brain), too much time just sitting in front of the TV binging your favorite shows..
If you are going on SSA Disability, you can earn up to $1,500 per month. So if you want to find something to do part-time to help occupy your day, go for it. Staying busy is very important for your mental health and maintaining a sense of self-fullfillment. If you have been furloughed because of the current health crisis there are actually a lot of jobs out there that are considered essential and can provide some immediate income for your family and possible medical benefits as well.
The other thing I highly recommend is finding a volunteer organization that you can feel passionate about and pour yourself into it or consider going back to school. Here is what I do: 1. Scouts BSA – Vulcan District Chairman 2. Scouts BSA – Greater Alabama Council Executive Board Member 3. Scouts BSA – Troop 93 Assistant Scoutmaster 4. Fellowship of Christian Athletes (UAB Chapter) – Board of Directors 5. Cross Creek Church – Pastoral Care Minister, New Visitor Coordinator, Sunday School Guest Teacher 6. Birmingham Theological Seminary – Masters of Biblical Counseling
Involving yourself in activities and organizations that do important work, work that you can be passionate about is one of the single most important things you can do to give yourself a sense of meaning and fulfillment. This is especially true if you are now on disability and can no longer work. For myself, giving up a career of 24 years was very traumatic and at the beginning caused severe depression and a sense of uselessness. I am now two years into disability retirement and I am in a much better place emotionally. I have now also opened myself up to doing some occasional consulting.
If you are reading this and you find you’re self in a similar situation, don’t give up hope. Make a list of three things that you can be passionate about and find an organization that can be an outlet for you. I promise you that even though it may not be the same as your previous career but it is a great substitute that can give you that sense of meaning and fullfillment back to your life. Feel free to comment and I will answer your questions. Good luck and God bless.
Applying for disability can be one of the most frustrating processes. Did you know that the Social Security Administration denies 97% of all initial claims? My first bit of advice is get a lawyer. It’s almost impossible to navigate the process on your own. A lawyer experienced in disability claims knows the process and can help you along the way.
I first applied in February of 2018. I had an appointment with a doctor that is a contractor for the SSA. I got my denial letter about a month later.The next step is to file an appeal (this is where you really need the lawyer).
After you file for an appeal it takes a couple of months to get a date assigned for a court hearing with a federal judge. Depending on where you live that can take anywhere from two to four years to get a hearing date. In Birmingham its about a year old and a half. When I finally got my date is was for October of 2019.
Now I was very fortunate that I had Long Term Disability Insurance so I was at least getting an income while I was going through this process. As a side note, no matter how old, or young you are, if you have this option through your work or through an independent agent, do it. You never know when something in your life might change and you might need it.
When my court date finally came I was nervous. I felt like I had one chance to convince a judge and a doctor that I couldn’t work. When I arrived, I met my lawyer in the lobby and waited for about an hour (they are always running behind). When we were finally called back, we were in a small room with the judge and a court reporter. There was an occupational health doctor on a speaker phone. The judge was very prepared and reviewed all of my medical files. He asked me a few questions and proceeded to ask the doctor for his recommendation. Your fate is really in the hands of the doctor who determines if there is any work that you can do. Luckily, the doctor on my case said no there was no gainful occupation I could do.
Now sometimes if you get the right judge, they will tell you then what their recommendation is going to be. Mine did not. At this point he just excused us. My lawyer said we should get the judge’s ruling in a week or two. Several months later I still had not received a ruling so my lawyer made a recommendation. She told me to reach out to my local congressman and ask that they intervene. I had to fill out a release and fax it to my congressman’s office but within one day of that, we had a ruling from the judge. He was going to award me full disability.
By the time I got the letter from the judge it was mid January 2020 and I got my first check in February. The other thing you will get at this point is back pay starting six months from the time you filed for disability. This is typically where your lawyer will get their fee. In my case I had to pay back all of the back pay to my insurance company.
The whole process took me almost exactly two years to complete. It was very frustrating at times but in the long run it was worth it. Be patient, get a lawyer and plan on sticking it out for a while. I realize if you have no income at all coming in these may seem like empty words but all I can tell you is don’t give up hope.