Tag Archives: chronic illnesses

Just Add It To The List

The life of someone with a chronic illness is not easy. Not only do we have to live with the cards we are dealt, but we are constantly bombarded with new ones. Every time a new symptom pops up in our lives, we have to question it: Is it caused by the tremendous stress we are under? Is it a new symptom to a current illness? Is our illness getting worse? Is it, Heaven forbid, a NEW illness?

The sad truth is that those of us with a chronic illness -like fibromyalgia or the plethora of autoimmune diseases out there- are susceptible to developing other illnesses. We can lose track of all the diagnostic labels thrown at us by well-meaning doctors. It is a dirty secret in the fibromyalgia community that none of us have just fibromyalgia. If I counted all my illnesses using my fingers, I would easily need both hands. Now image trying to take medications for all of those! I am lucky enough to have found medications that treat multiple symptoms and illnesses.

Recently, I succumbed to family pressure to jump down the rabbit hole of medical tests yet again. After enduring so many tests in the past with little to no helpful results in the end, I was not eager to go through them again. However, my symptoms were not getting any better and those who care for me were very worried. For three years I was losing weight at a steady rate without intentionally changing anything I was eating or doing. I would have flare ups of symptoms for discreet amounts of time – e.g., nausea, vomiting, abdominal pain, bloating, inability/desire to eat, feeling full quickly.

I started going to a GI doctor at a prestigious hospital hoping she could figure out the problem. If anyone ever complains that socialized healthcare in Canada or the UK is slow, they obviously have never tried to be diagnosed in the US. Unless you are in critical condition (i.e., dying), the process can be painfully slow. It can take up to three months to get an initial appointment with a specialist. Then, another month to get in for a test and another month to see the doctor again. If your tests come back normal -like mine do- this goes on and on. After almost eight months, I still have no official diagnosis but have dished out the overwhelming sum of almost $1000. How does one pay that bill on disability?

I was so distraught over the last test coming back normal that I called my doctor. I was upset and discouraged. I honestly did not see the point in going through more tests. I was finally on an anti-nausea medicine that helped enough to stabilize my weight. I was to the point where I was just going to suck it up and suffer through my debilitating flare ups. I was already on disability. My prospects of ever working full-time again were slim to none. So what if I was in more pain and more disabled than before? What difference does it make? It isn’t like they give you more money the more disabled you are. There is no prize for being the “disabled-est.”

I would like to congratulate my doctor for not giving up on me. She is also the type of doctor who doesn’t blindly follow tests. She knows they are not always correct. She knows that they can be normal at times even when you are really sick. She knows that if I am not in a flare up those omnipotent tests are not always omnipotent.

She came up with a working diagnosis – gastroparesis. It basically means that during flare ups, my stomach forgets to digest food so it just sits there for hours and hours and hours. I can vomit my dinner six hours later. That, my readers, is not normal! Instead of waiting for a test to comeback positive, she prescribed medication for it.Unfortunately, the medication does not always work and has a list of permanent side effects. Those are side effects that do not go away even if I stop taking the medication. I am not sure I want that added to my already complicated life. So what does that leave me? You guessed it! I need to suck it up and live with it…

Parenting With a Chronic Illness 101

When I got pregnant with my one and only child, I was an active and vibrant twenty-something year old. I had a great career that allowed me to travel all over the country. It challenged me at a level I wanted and, not to mention, it paid awesome. Those early years of parenting were difficult as a working parent but so worth it. I have to admit I felt like Supermom. Mom by night and worker bee by day. I thought I had it all. At some point, I switched careers so I wouldn’t travel anymore and could be home every night with my little one. But I still felt like Supermom. I am sure other working parents can relate.

Then IT happened…

I was about to turn 30. My husband and I were talking about having another child. I was comfortable in my new job. I was happy. But then I got a headache. I was never one prone to getting headaches – maybe one or two per year. But this headache was different. It didn’t go away for two weeks. And then it came back for a few more weeks. I knew something was wrong. I knew this was not normal. It took me several appointments with my family doctor and a neurologist who didn’t specialize in headaches or migraines before I realized they couldn’t help me. However, I am a researcher and did my due diligence. I found a top headache/migraine center not too far away in Philadelphia called the Jefferson Headache Center. It took two excruciating years of trial and error – plus a week-long stay in the hospital  – to stop my now daily, chronic migraine. I felt like I was in a nightmare until the pain stopped. However, by then, my brain and central nervous system had been rewired to amplify any and all pain while decreasing the neurotransmitters that suppress pain. It was a formula for fibromyalgia that was eventually diagnosed a year later.

Meanwhile, I was still trying to be Supermom to my little toddler. He was only three-years-old and could not fathom what was going on. I put all my energy into hiding my illness from him while my husband and I frantically looked for answers for my health. For those few hours after work that I would spend with my son, I would try to be active and play with him only to crash as soon as he was in bed. It was a strain on all of us.

Despite my best attempts, my son knew something was wrong. The pain was written all over my face. It was programmed into the way I walked, the way I moved. I could not hide it from those close to me. One night I was crashed on the sofa while my son played with his blocks. He came over to me with his Jaffy (an orange, stuffed giraffe he got as an infant and could never be without until he was ten) and place the raggedy animal on my head. “Jaffey will make you feel better, Mommy,” he said. It was so cute and sweet that I wanted to cry. My illness was already impacted my son. I felt like a failure as a parent because I couldn’t protect him from seeing his mom hurting. It was my first lesson in parenting with a chronic illness.

Who Knew That Medicare Does Not Pay For Most Wellness Visits?

I am in the middle of appealing Medicare’s decision to NOT pay for my annual wellness visit with my primary care physician. When I called my doctor’s office to find out if they had any idea what the problem was, I was told that there are numerous billing codes that can be used for an annual wellness visit, BUT Medicare only covers a pitiful few of them. What the heck is going on? Doesn’t Medicare realize that I am on disability due to several chronic illnesses (although none of them keep me from complaining online) and need periodic checkups to monitor my health? I take numerous medications that can negatively impact my liver and/or kidneys at any time. Without annual testing, a problem can go unnoticed until it is severe – or deadly. Doctors rely on blood and urine testing to make sure medications are not destroying their patients.

During the same wellness visit, I also complained about problems swallowing and severe heartburn – the type of heartburn that keeps a person from eating just to avoid the pain. I think THAT qualifies for a visit to the doctor. Don’t you? I saw my primary first to find out if I should see a specialist and to get recommendations. Isn’t that what my doctor is there for? If Medicare won’t pay for a visit to the doctor when I am sick, what will they pay for? Incidentally, they had no qualms about paying for my specialist bills. So what gives?

As I said in the beginning, I am in the process of appealing. My first appeal was denied so I am appealing the appeal now. I came to find out that Medicare requested my medical files from that visit for review a few weeks before the holidays, which was ignored by my doctor’s office because the person who sends the files is out until the middle of January. Seriously? No one in the doctor’s office could make simple photocopies and fax/mail them to Medicare? Apparently my doctor’s office doesn’t want to be paid – I keep ignoring their bills in the hope that Medicare will eventually come to their senses and pay for my $224 doctor’s bill. Come on, folks! I am on disability. Do I look like I am swimming in $100 bills? Anyone who collects Social Security (for retirement or disability) knows that every year our benefits cover less and less as inflation raises the prices around us. It is like being frozen at the salary you last made even if that was 10 or 20 or more years ago. Not the best of situations, I tell you.

So, Medicare, when are you going to get off your stingy butt and eliminate all this red tape regarding paying for annual wellness visits?

The Bait and Switch Technique

As the leader of my local support group South Jersey Connections, I take it upon myself to try to attend any free seminars on fibromyalgia, chronic pain, and chronic fatigue syndrome so I can share the information with my members (many of whom cannot attend due to their health). I have noticed that some brilliant (and I use the term loosely) person create a PowerPoint presentation on fibromyalgia that mainly focused on vitamin D deficiency and aluminum toxicity that can be cured by taking malic acid. This PowerPoint has been distributed so thoroughly into the healthcare community. I have seen it so many times I could recite it by heart.

Last Thursday night I attended yet another FM seminar with the same PowerPoint presentation. I was tempted to simply walkout when the chiropractor/nutritionist started his spiel but decided to NOT be rude and give the guy a chance. He obviously did not know how well-used the slides he was using were. As expected, the actual presentation was the same but, thankfully, the Q&A was more interesting. He really let his knowledge and experience shine through at that point and I was impressed. He had a completely different approach to improving one’s eating habits and dietary changes than the standard one-size-fits-all food pyramid that every nutritionist I have ever worked with uses. He focuses on your symptoms and blood work. He looks for signs of deficiencies in vitamins, hormones, and other areas. He looks to see if you are in an optimal range instead of the default ranges labs use (which are not the best ranges in most cases). He will treat borderline deficiencies through supplements and dietary changes. Having personally tried just about every approach out there (and having a diminished savings to prove it), I felt optimistic.

If you have ever attended one of these free seminars, you know the doctor or healthcare professional tends to offer a free consultation as reward for sitting through their presentation and also as a chance to get to know them better before deciding to be a patient. I usually pass on this offer because of its shear desperate sales technique. However, against my better judgement, I scheduled a free session with this man. He told me he would review any blood work results I brought with me to give example of how he could help me. I expected some basic information about increasing my vitamin D and eating less sugars to lower my blood glucose. I also expected him to try to sell me some of the supplements his clinic carries. Boy was I surprised – and not in a good way!

I show up for my free session and instead of the good chiropractor/nutritionist I met at the seminar, I meet a woman claiming to be a case manager. After quizzing her on her credentials, I find that she has none! She has five years experience working in that office as a case manager which I quickly came to realize was code for salesperson. After taking a thorough history of my symptoms, she explained the science-based nutrition program they use and then goes over the cost of said program. She spent a lot of time breaking down the costs for me with the various payment plans I could use. To do the full program would cost me $1,000 and insurance wouldn’t cover a single penny of it. Who wouldn’t jump on board for that? She was very thorough with the different payment plans and how I could spread the process out so I could raise money in between appointments.

I can’t express enough the disappointment I felt in not meeting with the chiropractor/nutritionist like promised and for having printed out all my blood work results over the past three years for nothing. I was so disheartened that I didn’t even have the energy to complain about the bait-and-switch they had pulled on me. I mean, what is the point? It won’t change how they treat me or any future potential patient, right? They obviously think this sales technique works. I am just so disappointed that healthcare clinics take advantage of sick people in this way. When you are sick, you can’t always think straight (can we say brain fog?). This technique blatantly takes advantage of us.

Pain Specialists and Their Lack of Training

I recently came to the realization, through the help of some well-informed friends, that there is no governing body in the world of medicine that officially endorses so-called Pain Specialists. Anyone can add that misnomer to their credentials after the most basic of training in the non-existent specialty. Since there is no American Board of Pain Management to oversee training and licensing, patients are left to the mercy of the individual doctor’s educational pursuits. There is no easy way for patients to evaluate the experience or training their doctors have received. There are no standards for pain management that patients can rely on during their appointments. If you have every been in pain, especially chronic pain, this is a very real and scary situation.

Only three specialty boards have a sub-specialty in Pain Management –  Anesthesiology, Physical Medicine and Rehabilitation, and Psychiatry and Neurology. They all use the same certification material and test that was developed by the American Board of Anesthesiology dated 2010. However, it is safe to assume that they approach pain management from their own specialty’s perspective. Anesthesiologists will be the first to recommend epidurals while psychiatrist will recommend therapy or antidepressants, and specialists in physical medicine and rehabilitation will recommend exercises and hot/cold therapy. A lot of good research has been done on the different types of pain, pain management therapies, and specific pain-related diseases and disorders in the past four years. I find it disheartening that the educational material might not be keeping up with the progress being made. Also, what exactly are the other doctors learning about pain and pain management? The single chapter in their med school textbook? Every doctor will need to treat patients in pain. I can guarantee that. Pain management should be a required course for all medical students. They should also be required to do a rotation in a reputable pain clinic before graduating.

Now let us discuss pain clinics. They are not regulated. They are not required to have a licensed medical doctor on the premises. I have seen some where a nurse practitioner runs it. There is a growing trend among chiropractors to jump on the pain management bandwagon and call their practices pain clinics too. All too often, pain clinics focus on one single, solitary treatment for a patient’s pain – regardless of the causes. In my eyes, the designation of pain clinic should only apply to a practice that actually takes a multidisciplinary approach to pain management. That means they have a staff who specialize in a variety of pain management approaches – this can include massage therapy, spinal injections, different exercise options, stress management, medication management, trigger point injections, acupuncture, chiropractic manipulation. Pain is too common a condition for our healthcare system to ignore in this way.

Chronic Illness vs. The Apocalypse

“It’s the end of the world as we know it and I feel fine…”                                                                                       – R.E.M.

Being a worse-case-scenario junkie, I have often wondered about how the world could end. Will it go down in a nuclear holocaust creating radiation mutants? Or possibly a virus that goes global before a vaccine or cure can be discovered, leaving a only those with a natural immunity alive? Or, my favorite, a zombie plague sweeps the globe? It is pure imagination for me – unlike some reality shows like National Geographic’s Doomsday Preppers.

I have often thought about what I would need in order to survive. Do I have the skills and the perseverance to adapt to a new set of rules and pitfalls? Since being diagnosed with multiple chronic illnesses and placed on a regimen of daily and rescue medications, my confidence in being able to survive has drastically diminished. Think about it. Could we survive without our medications? How long would a diabetic last without insulin? How would people with a mental illness last before purposefully or accidentally getting themselves killed? How would people with chronic pain manage to hunt their own food, build their own shelters, or runaway from a swarm of zombies or gang of marauders? Sure, we could muddle through for a short while. We would try our very best to keep up. I can picture it now – pushing myself through the pain until one day I simply collapse with exhaustion and couldn’t take another step even with a pack of cannibals on my trail. After watching the character Lori on The Walking Dead die during childbirth, pregnant women are now on my list of people who won’t survive either.

It can be pretty gosh darn depressing knowing I would be one of the first to die in a post-apocalyptic society. I would be as useless as an iPod without any power. If I was a healthy, virile thirtysomething weeding out the weak links in my group of survivors, I would most likely kill off someone like me. Of course, there are a lot of healthy people out there who would be just as useless as me. I guess that would be the consolation prize…