Lately, I have been breaking a cardinal southern rule. My mama raised me that when someone asked you, "How are you doing?" you should always answer with one of the following phrases: I'm good, I'm okay, I can't complain, etc. The problem is, I'm not doing good. I am in near-constant pain with periods of more intense pain. The Botox treatments for my headaches were working, but for some reason, they haven't been able to handle the current painful headaches I've been having. For a month or so, I have compromised with saying, "I've been better." Yesterday, a coworker asked if I was feeling better; I simply responded, "No." I'm tired of trying to put on a brave face and say that all is okay. It is not. I haven't gone so far as to be brutally honest and say, "I feel like shit, and I am always in pain." I'm getting close, though.
My mental and physical state is declining. I am tired. I am depressed. I am at my wit's end. I need some answers. Maybe I will be able to get some after my MRI next Tuesday. I talked to the nurse at the Headache Clinic, and she had talked to my neurologist about which MRI I needed to have: the closed or open MRI. She recommended that I get the closed MRI because the images are better, and if there is something small, the closed MRI is more likely to catch it, whereas the open MRI might not. I made the earliest available appointment: Tuesday night at 7:30 pm. So, next Tuesday, I will drive down to New Hampshire and have the MRI. I’ve never been fond of driving long distances at night by myself, but I have done it before, and I can do it now. I didn’t want to have to wait even longer for the MRI.
Luckily, I got a notice from my insurance yesterday that they have approved the MRI, and they did not specify which one they would allow me to have. The letter just said that Cigna approved me for an MRI with and without contrast. Cigna's Informed Choice Team has not tried to call me again to attempt to convince me to have the cheaper MRI, and I'd refuse if they did. Cigna's Informed Choice Team told me the first time that it was my choice. Yesterday, I got an email from Cigna with the subject "Tell us about your Cigna service experience." They should not have asked me that because I rated my experience very low, and I told them exactly why it was such a terrible experience. I know they will dismiss my criticism, but they need to know that they cost me a week in getting a test that could be essential in diagnosing the problem and possibly saving my life if the MRI shows something terrible. I pray that there is nothing deadly found, but I want to know what they might be able to find out.
When doctors in the past have ordered CT scans, x-rays, or other tests because they could not diagnose what was wrong with me, it has each time turned out to be something. Once, it was pneumonia. Another time it was epiploic appendagitis, an uncommon, benign, self-limiting inflammatory process of the epiploic appendices. Luckily, that time it was not appendicitis. The most recent time I had an x-ray, they found bursitis and arthritis. Luckily, none (other than the pneumonia diagnosis) was anything horrible, but it did provide peace of mind. Mysterious pain can cause all sorts of psychological issues when doctors have a hard time diagnosing the cause of the pain. For me, at least, I begin to wonder if my pain is even real, though I know that I feel the pain. The worry and depression can cause further health issues.
While I talk about my pain and health on this blog, I only talk about health issues with those closest to me in real life. Susan hears all about it and is always helpful in alleviating my worst fears. My mother hears about it when she will actually listen. But most of the people in my life, I rarely tell them about issues I am having. I don't want to be seen as a complainer, and I don't want their pity. I want people to understand, but I do not want pity. I talk about my health on this blog because someone could have the same health issues, and it helps to know that you are not alone. I want to help others if I can, and I would like to know that I am not alone.
Joe,
ReplyDeleteHope you get a complete picture on the cause of your pain.
Strength of MRI machines are measured in units called Tesla. The stongest machine I know of is a 5 Tesla machine at the local university medical school. Three Tesla and above will give better detail to determine cause without contrast. Contrast is usuallly used in 1.5 and 2 Tesla machines.
Contrast agent gadolinium is used only in the US. It is outlawed in most countries. It is toxic. Ask you diabetes doc or kidney specialist if they allow it. Sad that insurance companies bake in the fact most patients will fold and not demand best Tesla machine and no contrast. You are the boss and the patient. Fight like hell for the best treatment available. Be well and without pain.
Alexander
Most people just ask "How are you doing?" out of habit and it's rhetorical as most people really don't care at all but they may come off as genuine when they ask. That said, you've roped at least me in and I really want to know how you are and appreciate that you continue to share updates with us.
ReplyDeleteI do hope that the MRI will help glean some knowledge into why you are in so much pain but I do hope that they do not find anything bad. There has to be a solution to this. It's like Tom Hank's character says in Philadelphia, there is a solution to every problem.
Speaking of which why I am sure it's not in your top 10 list of things to do, you may consider asking if you can be hospitalized. I say that as often people in the hospital are viewed as sicker and more emergent, therefore they get quicker diagnostic testing done, thus speeding up the diagnosis and recovery process. I'm sure that wouldn't exactly make your health insurance company pleased but if it helps you all the better.
I can't imagine working, let alone living with a headache. I only get what I am sure are mild headaches compared to yours. They happen in frequently and they drive me insane so if I was in your shoes I am not sure that I would make it very long. I've also heard that God doesn't give you a challenge greater than what you can handle. I've been through some stuff in my life and I'm sure you have too but that one little phrase does stand out to me from time to time.
I know that you said narcotics wouldn't help and could actually make things worse. With that in mind just food for thought, could you get medical marijuana? Maybe that would give you some relief from the pain. At any rate, I do hope that you get answers and treatment to get out of pain sooner rather than later. Bravo for hanging in there and continuing to fight, again I'm not sure that I would be quite as strong as you are.
Please feel better soon!
Alexander, thank you for the advice and explanation. I saw my doctor this morning, and he explained further why it would be necessary to have the more accurate MRI, especially if it is a nerve issue or small tumor that they would not be able to see with a less accurate MRI.
ReplyDeleteJeremy, I also want to thank you for your concern. I'm not sure at this point they would consider hospitalizing me to get the test faster, but my doctor assured me that things look like they are going in the right direction. He is confident that the neurologist will find me some kind of relief. As for medical marijuana, if I thought it would help, I'd certainly try it; however, marijuana happens to be a major trigger for my migraines. There are certain things that cause my worst migraines, and experience has told me that marijuana is one of them. Even if I am just around someone else smoking it, I get horrible debilitating migraines. It is worse if I consume it directly, whether smoking it or as an edible. Sadly, it's jus not a viable option. Acupuncture may be an option if all else fails, as it does sometimes helps with migraines.
Joe, what more can I add to expressions of concern and affection, which are heart felt but change nothing? I am fortunate in never having to face the health challenges that you do. Roll on next Tuesday and let's hope the cause of the pain is found and treated. Roderick
ReplyDeleteJoe, You are right to not ask for pity! I admire you for your ability to continue working and thinking and providing us, your community of readers, with insightful information every day. I have been following your blog almost from the beginning and I recall the many challenges that you have faced over the years. You are a strong man.
ReplyDeleteThat said, I am very concerned about you and your health. Don’t let up in your challenge to the insurance company. I hope you get a diagnosis quite soon.
I suspect that there are many within this community of readers who, like me, hold you in a special place in our consciousness*. In fact, I feel protective of you, in much the same way I feel protective of my grown-up children. Please know that there are many who are with you in spirit every day. Don’t hold back from telling us what’s on your mind. There may be someone who can help you find solutions. You are not alone.
Charles of Durham
*Unfortunately, the Christian Right has taken possession of the concept of “thoughts and prayers”. I refuse to use that trite phrase any more.
hang in... this may not be of much comfort... but know there is concern for you
ReplyDeleteyour pain and uncertainty of what is going on is very real.... take care...