Traditionally, I would say this in reference to men…and to sell more Mr. Clean specials at the laser center! But now, I have joined the club. A healthy dose of cancer shedding, being tired of constantly sweating, a clever idea from my daughter Katy and voila! I have joined the club! Granted, it has only been an hour since we publicly shaved my head on video, jamming out to 80s tunes and then shared it. But, you know, I feel weirdly relieved and liberated. True, this could all be the result of rash, steroid and chemo-induced flight of ideas decision making. It’s possible, but I truly don’t think that’s it.( Tune in tommorow to see if I am crying over my pile of hair. I’ll own it if I do..lol)
Seriously, I feel kind of liberated. On top of that, when I ran outside to howl for a minute, the breeze felt FAN FRICKING TASTIC! YESSSSS! I kind of danced around the yard a minute and let the moon bounce off the top of my head with relish. I think it boils down to the fact that this was MY decision on My terms. This was a weirdly welcome alternative to the constant worrying about when the next clump of hair was going to come out in public somewhere. It really was. My poor husband, on the other hand, is a little bit stunned. I think, for him, this is a smack in your face, unavoidable reminder of what is going on. I have to give him a minute. I have to remind him that it will be ok……and that I’m…still…..me. Have a fantastic, freeing night!
It’s that time again.
Time to draw my sword and open my vein
Disrupting Cancer’s evil reign.
Time for the battlements to flow
Freely to let lymphoma know
There is no place left to go.
No place left to hide so get ready.
My force to defeat you flows strong and steady.
Seeking you out in all your hiding places
Prepared to leave no tangible traces.
Our farewell will be long but not fond
For ours IS a breakable bond.
Dr. Katz, age 51
Now remember, this is just for fun….
I can see it already. The countdown to chemo has started. 5 days from now I will receive my first 5 hour installment of a combination of poisons and immunotherapy. Yippee! Bring on the side effects! Let’s get this show on the road! One step closer to a cure!( I hope) Bring on the easter egg look! Now we are really getting somewhere! Finally moving in a positive direction!
It all sounds “good” doesn’t it? Just what I have been anxiously waiting for all these months with all the delays etc. Feeling weirdly nervouscited, terrified, and good about it all at once. But then, I flashed back to the conversation that my chemo nurse had with my husband at our last visit. He was trying to be funny and made a silly remark about how my the quality of dinners at our house has really elevated since I have been home so much and that at least there was one benefit of me having cancer. The nurse kind of glared at him and said, “Mister, you can kiss those gourmet meals goodbye for now because I can guarantee that she won’t have the energy to do it.” He looked kind of stunned. Literally that thought had not occurred to him until that exact moment…lol I could see his wheels spinning; No more chicken cordon bleu. No more baked ribeye with a parmesan crust. OMG! I couldn’t help myself. I started laughing. Seriously dude? Last time I checked, more than one person in our house knew how to cook. Someone else can run frantically home at lunch and throw something in the oven with the timer for later. I started to visualize the mounds of take out containers in the filthy kitchen of unwashed dishes. I started hearing the pitiful whining of human beings wasting away. Then I realized that gourmet dinners were not the only thing that was going to go the way of the dodo. OMG! I was going to have to concentrate on myself and getting rest and not taking care of everything for everybody. Oh my lord who was going to keep track of everybody’s schedules without me nagging all the time? Were they going to have to be responsible for making it to their own appointments? Find their own rides? Was my daughter going to have to finally get her long overdue driver’s license? Were the dogs ever going to be let out to go to the bathroom? Was the house just going to be awash in filth all the time? Were any bills ever going to be paid on time? Oh man! I really started snowballing. I was in charge of a lot more than I ever stopped to consider. Mind you, I had already started the family on my own version of achieve your independence boot camp, but was it going to be enough? Lol….I guess we will have to wait and see. I’ll get back to you.
Being a cancer patient definitely has it’s challenges. I think we all can agree. Feeling sick, fatigue, nausea, loss of appetite, hair loss, shortness of breath are the things that we tend to think of first as the top issues that cancer patients face. However, there is another challenge that insidiously creeps it’s way into your life: envy and resentment. It’s not good. It affects your mood and your relationships. It is just as unpredictable as the cancer itself. It can make you wallow in self pity, even when you don’t mean to. It can make you lash out at the people that care about you and are trying to help you. What am I talking about exactly? I am talking about that feeling of jealousy and resentment that creeps up on you over time that you misdirect toward anyone in the way. What do you become jealous and resentful of?: anyone that is living a full life and doing what they want when you can’t! You become like that puppy dog at the window hoping to go for a ride in the car somewhere, anywhere. The real you spends your time encouraging everyone around you to keep living and do what they love, even if you are sick. Then the other you starts muttering under your breath, crying and cursing them as they leave you. It is completely ridiculous I know and it’s unfair both to you and the people in your life. It basically boils down to emotional abuse for all of you. Nothing good can come of it. I have done it myself.
However, as I sit chastising and judging myself for doing it, I also have to realize that some of these confusing emotions have to come with the territory. It is only natural for you to feel out of control emotions in a pretty out of control situation. I mean c’mon, the cancer is already unpredictably calling most of the shots when it comes to day to day physical living. Why wouldn’t your emotions be all over the place? I think the key is not that those emotions are there, but what you do with them. You can’t erase your feelings, but you can try to control yourself so they don’t run other people over like some kind of freight train. Don’t bite the hand that feeds you. Don’t lash out at the people trying to help you. That won’t help resolve the feelings and only leaves you feeling bad about yourself. That certainly won’t help you heal any faster. Here is where therapy has come in very handy, at least for me. I highly recommend it and I think every patient facing serious illness should have it. It is a much better option to let out those feelings to a paid professional who is trained in how to help you deal with them, rather than blasting your family who is only trying to help you. It might just save your relationships.
Doctors and health care teams listen up! I have something to say! Some patients are more fragile than others. What the hell does this mean? It means that you have to be extra careful what you say to them. It means that you have to be extra thoughtful before you speak to them. It means that you need to do your research before you open your mouth and accidentally freak them out. You as the physician are part of a team and the whole team has to communicate with each other so that everyone has the same information. The patient does not need to hear different and/or conflicting information from each source. This only leads to potential panic and confusion and makes it difficult for the patient to follow through and get the care that they need. To you it may seem like a simple oversight. To the patient, it can seem like the end of the world.
This really applies to all patients, but the group I have in mind at the moment are cancer patients. This group of patients literally has their lives in your hands. They hang on your every word. They are depending on you to help them get to the other side of their illness with an intensity that is greater than patients with other diseases. You have a direct impact on their physical AND mental health, both of which are key to their survival. Think about it for a second. Anything you say to them is regarding a disease that could kill them. You tell them if they qualify for clinical trials. You tell them what chemo or radiation they will get. You talk about costs. You have to talk to them if their cancer is not responding like you hoped. Sometimes you have to tell them they are going to die. Every word out of your mouth carries the weight of their future. One bit of discouraging news may not just mean a bad day for them. It may affect the rest of their lives. No. I am not exaggerating. It is really that important.
The bottom line is that the healthcare team has to be a cohesive, thoughtful, compassionate, comprehensive unit. Patient’s lives, mental health, and physical health depend on it.
Just remember before you read this…..it is for fun only.
Yup. It’s started already. One little diagnosis of cancer and everyone thinks you are immediately transformed into a broken china doll that can’t do anything for herself. I swear to God even the dogs treat me differently. Frannie is constantly looking at me with a weird sort of sad, worried expression on her furry face. She is stuck to me like velcro at all times and watches my every move. She doesn’t even rudely jump on top of me anymore. She just sort of slinks up on the couch and gingerly slides in next to me. Hmm. Interesting. They say that cancer makes you smell differently to a dog. So, maybe someday when my cancer stink is not as strong she will go back to jumping on me all the time and being ridiculous. Wait? Do I really want that?
My family makes me alert them to the possibility that I may actually want to bathe or go to the bathroom by myself, in case I should fall or something. However, to be fair, I did splat on the floor a time or two before so I really have to give them that one. Ok. Ok. They also don’t want me lifting, pushing or pulling anything….ever! But then they aren’t available when something needs to be lifted pushed or pulled. Ugh! What choice does a girl have? This is why Christmas decorations will be up until 2022. I am sure of it.
Now these same folks that want to treat you like a fragile little thing also don’t seem to mind when you sneakily did something that works to their advantage, like make them a gourmet dinner because you literally had nothing else to do! But, that’s only human I guess. Who doesn’t like good food?
Now, don’t get me wrong. It’s not all bad being let out of certain things. For example, watching everybody load the horses into the trailer themselves and pack everything while I just lounged in the car? Pretty fantastic. Not having to be the one to actually drive everybody everywhere and sometimes I just get to ride along? Also not complainin. If only I could pick and choose tho! It would be great to be able to decide on the spot when I want to be waited on hand and foot versus when I want to tear around like Wonder Woman. Just sayin. I completely get that there are things that I simply cannot do at times. Sometimes I am so weak and tired that I feel like the energy was sucked out of me with a funnel. These are the times that I desperately need help and I thank God for my amazing army. Then, other times I want to grumble and do what I want anyway because I am feeling resentful and frustrated at the limitations. The bottom line is, I just need to learn to be patient with my peeps and with myself. They are all trying to help and they are definitely better at it than I am at helping myself. For now, all I can tell you is that I’ll work on it. Have an amazing day!
What am I talking about? I am talking about gynecological care guidelines. Most recent guidelines from the USPSTF recommend pap smears every three years from ages 21 to 65 if using just the pap smear or every 5 years between 30 and 65 if using the pap smear and HPV testing. These recommendations are based on epidemiological data and costs. The few issues that may be caught before the age of 21 and after the age of 65 are too few and far between to be considered economical to screen for.
I have a problem with this in both the translational sense and the practical sense. With regard to the translational sense, these recommendations have the tendency to confuse adult women based upon terminology. Most women equate getting their pap and their annual check up as one and the same. They are not! In my office, the pap smear is about a 10 second clip of what I do. It is just one small piece of the puzzle. The real meat and bones is in the head to toe exam that I offer which allows me to check for anything that could be wrong in all body parts. You see when you tell most women they don’t need a pap but every three years, if at all, they think sweet! I am off the hook for any gynecologic exams for three years at a time and they don’t come in at all. In the practical sense, this lack of clarification is both irresponsible and potentially deadly. Obgyn is blessed to have some of the best preventative tools in the business but we become crippled by these recommendations because the patients don’t show up. Add to that the fact that insurance companies jump on the bandwagon and start trying to refuse to cover paps/annuals and these women are potentially really screwed. In the practical sense,, the thing is that most gyn conditions do not present with symptoms until the condition is pretty advanced. A little itch on the vulva could actually be a vulvar cancer. A little feeling of fullness in the abdomen could actually be an ovarian tumor. But, unless someone is looking(i.e me), the patient doesn’t know, the condition goes unrecognized and the situation goes from simple and treatable to serious and deadly. In addition, I would challenge the academicians that sit behind the desks and formulate these recommendations to sit down with the patients whose diagnosis you missed and explain to them how it’s ok because the cost/returns ratio was just not in their favor to justify screening. I am not sure that quoting guidelines will help the patient or the family feel any better either.
The bottom line is that I am a fan of the annual exam, whether or not the pap is performed. It is definitely the most bang for your buck way to be watchful for your patients. It really goes back to the OPPOSITE of the old adage: what you don’t know or can’t see CAN hurt you! Have a great day everybody!
It started off innocently enough…..some serious car accidents that I was not supposed to be able to walk away from. So, right off the top, I already know I am a blessed woman. I have not forgotten that. Then, the residual injuries slowly and insidiously crept in and invaded my bones and nerves, but that was to be expected over time. It’s not the kind of thing that you consider very much at the time because you are just lucky to be alive, right? A few aches and pains are nothing compared to losing your spot on Earth. Gotta keep it in perspective.
However, fast forward 20 years and words like stenosis and spurs and compression dominate my latest MRI. Right now as we speak, I am thanking my lucky stars that I did not have any patients today because I am having the granddaddy of all fibro flares. Being able to be at home allows me to take my Motrin, stay in my pajamas, drink a ton of water, and lay back in my ice helmet all day if I need to. I don’t have to show off my unsteady gait because of the inner ear inflammation. I don’t have to struggle just to move my arms and legs while hot pokers of pain are sticking through them as I am faking a smile. I don’t have to worry that my head and neck may blow right off my shoulders at any minute. ( Ok. Just kidding on that one. I know that is not going to happen. It just feels like it is.) I don’t have to be afraid that someone will want to show me affection with a hug that I might stiffen during, afraid to offend them because their display of kindness will only translate to pain for me. I can run to the bathroom as many times as I want with the temporary IBS symptoms that I get. Please do not misunderstand. If I had patients today, I would get myself to the hospital somehow because that is the job that I love and I would just spend the day worrying about who I let down that day anyway..lol. There is no question about it. I am just saying that I can get through this flare a little faster if I am able to concentrate at home. I consider myself lucky at this point. I am not on any chronic pain meds. That is largely because I am ferociously stubborn and the fact that I realize that, with my family history, that would potentially be a move with more risk than benefit. I still go to work. I live my life as fully as I can. I struggle but am mostly successful in maintaining an empowered attitude, which I truly feel impacts the severity of my disease. But, there are some days like this one when I need to just stop a second and breathe.
The thing is, I am not different than millions of people who are suffering from those chronic, invisible diseases every day. There are so many of them: arthritis, chronic fatigue, fibromyalgia, depression and mental illness, diabetes, digestive disorders like IBS or celiac, Lyme disease, migraines, Lupus, and Sjogrens. So, what the heck do I mean by a chronic, invisible disease? An invisible disease is one that does not show obvious external signs or symptoms. They may cause symptoms like dizziness, pain, fatigue, or mental health issues. None of these are things that a person walking by would notice. If they look ok, they must be ok, right? Wrong! Occasionally, we get excited about one of these conditions if they get featured in an article about a celebrity that was affected. But, the vast majority of the time, they go unrecognized and misunderstood by both health care providers and the general public. This really adds to the mental weight of these conditions for the patient and paves the way for feelings of isolation and hopelessness. Did you know that the U.S Department of Health and Human Services estimates that by the end of 2020, 157 million people in the United States will be affected by a chronic illness? In addition to that, the United States Census Bureau estimates that 96% of these chronic illnesses are invisible. That is a huge number! Did you also know that many studies have been done as far back as the 1990s that looked at the lack of validation( belief that the patient was really suffering) as a factor in their disease. The vast majority of patients in the focus groups said that lack of validation was their most significant challenge in managing their condition. It makes sense though, doesn’t it? We all want to be believed. When someone doesn’t believe us, it actually has the power to cause it’s own kind of pain, beside the physical pain we are already experiencing.
There are so many misconceptions about invisible chronic illness. The first one we have already discussed. A person must feel ok if they look ok. We already know that is incorrect. Most patients with these conditions have spent a great deal of time developing coping mechanisms to allow them to enjoy regular daily life. I do it every day. The second one is the conception that the person just needs to rest and they will feel better. I can tell you first hand that all the sleep in the world is not going to break or cure a fibro flare. Sometimes, you can’t even sleep because the pain gets so ridiculous. A third misconception is that all people with chronic invisible illness are really drug seekers. Labelling all of those patients as drug seekers once goes back to the lack of validation of their symptoms that I mentioned earlier. The implication that they are drug seekers indicates that their symptoms cannot be real and they cannot be in any kind of true pain. Wrong again. Another misconception that I hear is that those patients that unable to work because of their pain must “have it made” because they get to stay at home all day and goof off. I actually have heard people say this with an obvious tone of jealousy because they truly think that those homebound patients have a dreamy lifestyle, doing whatever they want all day. Let me paint you a picture: You are trapped at home, in pain, unable to work and support yourself and unable to do the things that you enjoy on a regular basis. Does that actually sound dreamy to you? I think not. Last but not least, I have heard that stress reduction is all that these patients need to get better and that their pain is “all in their head” and they need to “get over it.” Stress is definitely a factor in pain severity, as is emotion. As stress invokes emotion, pain is heightened. Emotion and perception of pain signals are biologically intertwined. However, stress does not CAUSE pain. You can be just sitting somewhere, minding your own business watching butterflies and a flare can envelop you before you know it. That kind of thinking is far too simplistic to explain chronic pain. It really boils down to another type of lack of validation.
The real question to ask is how do you support these patients, not how to cure them. There are no cures as of yet for any of the diseases that I mentioned. There may be treatments, but not cures. Many of these treatments have side effects that need to be weighed against the symptoms of the disease itself. This is important to keep in mind. So, how do you support them? You support them by listening and believing them and throwing away your preconceived biases if possible. Try not to get frustrated because you can’t cure them or that there is no obvious external marker for you to pick up on and follow. Be supportive when they need it and back off when they need space. These patients are challenging to say the least. I always use a multi-disciplinary approach that addresses the physical and the mental aspects of their condition. The team approach has worked the best in my practice. These patients are going to need pain control options, whether it be massage and acupuncture, anti-inflammatorys, Lyrica or narcotics. Their pain is real. Be ready. Most of all, you need to believe them. Sometimes the very key to their path to a reasonable quality of life may just be getting someone to listen. Have a fantastic day everyone!
Ah fibromyalgia! So often maligned as a bullshit, all in your head disease. Patients are placated, symptoms downplayed as just being overemotional or “making yourself sick” or dismissed all together. Seeing is believing when it comes to diseases right? If you can’t see anything on the outside of a person, they must be OK right? Wrong! Did you know that some physicians feel so strongly that fibromyalgia is baloney that they will refuse to see patients that have that on their history list. How do I know? Because I am one of them!
Ok, now that I am semi-finished with that initial rant, let me educate you a bit about fibromyalgia. I feel like it is time, as I am sitting here in full flare, probably brought on by the itty bitty amount of stress around me in the world today…lol
Let’s start out with some diagrams about fibromyalgia and all that it affects
Now let’s talk about fibromyalgia. We are not going to be able to discuss everything in the diagrams above, but we are going to hit some of the key points. The following information regarding fibromyalgia comes from a mix of two sources: my own experience and the Mayo Clinic. I figured that it would probably mean more to pull out a big gun like the mayo to help convince the dubious of this crappy disease’s validity. Well, here goes. Fibromyalgia is a real beast. Did you know that fibromyalgia is one of the most common chronic pain conditions in the world. It affects about 10 million people in the United States alone, according to the National Fibromyalgia Association. It is a disorder that is characterized by widespread musculoskeletal pain and fatigue. It does not cause joint damage per say, but the musculoskeletal pain is still quite severe. It also affects sleep, memory and mood. YAY! There is research that suggests that fibromyalgia amplifies painful sensations by affecting the way the brain processes pain signals. Huh? What? For example, a typical person might find light stroking on their arm(“arm tickles”) pleasurable on any given day. For a person with fibromyalgia on a flare day, they might perceive those light arm tickles as a person literally digging into their arm with hot pokers, which is about the furthest from a pleasurable sensation that you can get. This can definitely get in the way of a good episode of hugging or snuggling.
So, why does it hurt? We think that this abnormal processing of pain signals in fibromyalgia patients is due to abnormal levels of the neurotransmitters in the brain, spinal cord, and nerves. We have seen that repeated nerve stimulation in fibromyalgia patients actually causes changes in the brain and abnormally increases these neurotransmitters. On top of that, the pain receptors in the brains of fibromyalgia patients then go on to develop a type of pain memory and become even more sensitive. This results in the receptor “overreacting” to any pain signals.
We really do not know for sure what causes fibromyalgia. It is said that fibromyalgia symptoms can begin after a physical trauma, surgery, infection or significant psychological stress. However, there are other patients with fibromyalgia that gradually develop symptoms over time with no triggering event. Family history also seems to play a role in fibromyalgia. A patient is more likely to develop fibromyalgia if they have a relative who has it. I have seen this myself over the years. In my particular case, I can check off several of those boxes. I am blessed to have survived some horrendous car accidents. I have experienced lifetime movie-worthy psychological stress, in addition to multiple surgeries and I have family members who suffer from fibromyalgia.
The part about the correlation to psychological stress is what really gives fibromyalgia a bad name and it’s victims a lot of discrimination. This fact just makes it easier for people to label those patients as psychosomatic or treat them as if their pain is not real. Trust me the pain is real! The flares are real! I am very fortunate that I do not get flares that often, but when I do, I experience a multitude of symptoms including diffuse hot pain, especially in my neck, back and shoulders. All my sensations are off. I could scratch an itch on my arm and swear I just accidentally burned myself with a hot drill. My head hurts. I feel feverish. I am exhausted. Sometimes I even feel dizzy. My TMJ acts up. I get temporary irritable bowel symptoms. It just really adds up to a super fun day. I will admit that there is a correlation between stress, emotions, and symptoms. The symptoms are definitely worse when I am stressed, but then sometimes I have symptoms even when there is no stress and then I become stressed out because I feel so shitty. It can really be a vicious cycle. I am not sure that anyone can truly understand what a person with fibromyalgia goes through unless they have actually experienced it. We tend to judge people and their disease severity by outward appearances. It’s like we can’t believe something is real until we can “see it with our own eyes.” Well folks, there is nothing to see here and I guarantee you it is very real!
Let’s break down these symptoms a bit more: widespread pain, fatigue, and cognitive difficulties. Fibromyalgia pain is often described as constant dull aching that has lasted at least intermittently for at least three months. It has to occur on both sides of your body and above and below your waist to be considered widespread. As far as fatigue, fibromyalgia patients often wake up exhausted, no matter how long they have slept. Their sleep is often interrupted by pain and other sleep disorders like restless leg syndrome and sleep apnea, just to add to the fun. “Fibro fog” is a term that is used to describe the cognitive troubles like impaired ability to focus, pay attention and concentrate. I get it, fibro fog sounds made up, but it is very real as well. There are times when my level of discomfort really does get in the way of finishing a thought at that moment.
Fibromyalgia likes to hang out with a multitude of other painful diseases like migraines, irritable bowel syndrome, migraines and other headaches, interstitial cystitis( painful bladder syndrome) and TMJ. It’s almost as if all the fibromyalgia components aren’t enough by themselves. It’s like a domino effect with other body systems falling in line with altered pain perception with emotional component. The patients that have more than one of these pain syndromes truly have the capacity to suffer without some compassionate help.
Did you know that women are more likely to develop fibromyalgia than men? According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, women are eight to nine times more likely than men to have fibromyalgia. It has been suggested that women could be more at risk for fibromyalgia in part due to the role that hormones play in the perception of pain. Fluctuating estrogen and progesterone levels during the menstrual cycle seem to correlate with severity of fibromyalgia symptoms in some women. This fact of course leads to more discrimination as women are often thought of as the more emotional sex to begin with. This is consistent with the misguided thinking that fibromyalgia ORIGINATES from emotions and emotional triggers rather than the more accurate fibromyalgia is AFFECTED by or ACCELERATED by emotional triggers. There is a difference.
How is fibromyalgia diagnosed? Back in the good old days, doctors would put a patient through an 18 point pain exam. This exam consisted of a physician pressing firmly on 18 different points on a person’s body to see if any of them were painful. Nowadays we do not put patients through the tender point exam. Now doctors diagnose fibromyalgia based on the patient’s symptoms and if a person has had widespread pain( both sides of the body and above and below the waist) for more than three months with no underlying medical condition that also causes pain. There are no specific blood tests or x rays to diagnose fibromyalgia. But, doctors will probably draw a complete bood count, sed rate, ccp, rheumatoid factor and thyroid function tests to rule out other underlying disease.
So, how do we treat it? Is there any hope? The best option for fibromyalgia treatment is a combination of medication and self care. I am a fan of the multidisclipinary approach, emphasizing good physical and mental heath, along with management of pain to increase quality of life. As far as medications, the U.S Food and Drug Administration has approved three drugs for the treatment of fibromyalgia. Two of these drugs alter serotinin and norepinephrine levels to help control pain: Cymbalta and Savella. There are some older drugs that affect these same neurotransmitters as well like Elavil and Flexeril that can also be helpful. The third drug approved to treat fibromyalgia is Lyrica. Lyrica works by blocking the overactivity of nerve cells that are involved in the transmission of pain. Neurontin works in a similar way and is also sometimes used. Over the counter pain relievers like Tylenol, Motrin, and Alleve can also be helpful. Narcotics and opioids are not a good idea for fibromyalgia because they can lead to dependence and even worsen pain over time a a result. In addition, the side effect of sleepiness would only accentuate the baseline fatigue that fibromyalgia patients already suffer with.
There are non drug therapies as well. Physical exercise is the most effective treatment for fibromyalgia and should be used in addition to any drug therapy. Patients benefit the most from regular aerobic exercise or other body-based therapies like Tai Chi and yoga. Let me be clear, I am not saying anything about it being EASY to exercise with fibromyalgia. More often than not, I am usually cursing like a sailor when I first get started, especially if I am having a bad day and am hurting. The good news is that, even if a patient is in pain, low impact physical exercise will not cause any harm. I have to admit that, even if I am hurting at first, I usually feel better when I am done and I definitely feel better day to day if I keep up an exercise regimen. Physical therapy is also a good option because the therapist can individualize exercises for strength, flexibility and stamina. Water based exercises are very helpful as well. My motto is it’s ok to keep cursing, as long as you keep moving.
Acupuncture has also been suggested as an option for Fibromyalgia. Acupuncture involves the insertion of very thin needles through your skin at particular points on your body. It has been a key component of Chinese medicine for thousands of years. The Chinese use it to balance the flow of energy or life force (chi) that flows through the meridians( pathways) in your body. They believe that inserting these needles will re-balance the energy flow. In Western medicine, the acupuncture points are viewed as places to stimulate nerves, muscles and connective tissue. By stimulating these points, your body’s natural painkillers are stimulated like substance P, endorphins, and met-enkephalin. This stimulation of natural painkillers can possibly help with fibromyalgia pain.
The S.H.I.N.E protocol has also been suggested as a holistic approach to treating fibromyalgia and chronic fatigue syndrome. S stands for sleep. Get adequate sleep to replenish your energy and muscle repair. H stands for hormones. Correct any underlying hormone imbalances such as estrogen, progesterone, testosterone, or thyroid hormones. I stands for immunity and infections. Looks for underlying viral, bacterial, bowel, sinus or yeast infections and treat them. N stands for nutrition. Make sure that your vitamins and minerals are in optimal balance. E stands for exercise as able. Don’t overdo it and cause undue fatigue. Gradually increase exercise as tolerable.
It is very important to keep yourself mentally healthy with fibromyalgia. All that pain can really drag you down. Patients with fibromyalgia have a high percentage of anxiety and depression. Some of them had anxiety and depression before developing fibromyalgia. Some develop anxiety and depression after fibromyalgia. I think that chicken or the egg question can never be answered with certainty. I always recommend regular counselling to my fibromyalgia patients and I use it myself as well. A counsellor can be a fabulous resource for stress management strategies which can help lessen flares. In addition, a counsellor can help get at the root of any psychological trauma the patient may not have processed yet.
Last, but not least, I think it is important with fibromyalgia to take an active hand in developing your own strategy for how to deal with flares, keep moving and increase your own quality of life. I have noticed over the years that the biggest predictor of quality of life in my fibromyalgia patients is whether the patient is actively seeking ways to feel better and be captain of their own ship or if they have given up, resigned to be a victim forever. I have some patients who are in a wheel chair and on disability and I have some patients, like myself, who are active with jobs and living their lives. I really do believe that there is a mental game that must be played and won with fibromyalgia in order to not let it rule your life. I know that for myself, I have to get up every day and will myself to keep plugging and keep going, even if I don’t feel like it. I am not successful every time. There are some days when I am having a flare that is so ridiculous that I have to stay home, drink tons of water and wear an ice helmet around my head and neck. I have to force myself to go for a walk or workout because I don’t always feel like it and it hurts when I do it sometimes, but I know it is essential to keeping me moving I have to come up with ways to manage pain that still allow me to function during the day. My favorite pain management so far is to use some daily turmeric as a supplement, do some kind of workout every day, use Motrin when I have to, and drink tons of water to help me clear whatever inflammatory lactic acid that I have built up in my muscles. Massage is great too, when I can get to an appointment. I try to manage stress the best that I can, but I would be lying to say that I am perfect at it. Stress is unavoidable in my line of work…and life..lol The point is, that I have developed some strategies that are working for me..most of the time. Everybody is different. This disease sucks, but it is not life-threatening. We need to own it and work hard to find whatever strategy works for us. You are not going to cure it, but you need to find a way to live with it. That’s all for now.
forgot what I was looking for
forgot who was looking for
a source of inner strength?
Secret cave of wonders?
a power source?
something I was missing?
Hold on a sec.
it’s getting a little clearer.
I don’t need anything else.
I don’t need anyone to do this for me.
I need to stop wasting time
Stop searching unnecessarily
I have what it take
I can do this.
dripping down my cheek
reflecting what’s inside
Facade shield spontaneously raises
CAnt let anyone see that
have to be strong
to help others believe
to help me believe
I can get through this
shabby shack on the hill
peeling paint and uneven steps
huffing and puffing
dragging out chairs and umbrellas
soft sand and weeds wiggling like snakes through my toes
bird chatter and frog chorus like a natural serenade
cool clear spring water to swim in and rejuvenate
peace like I have never known
just the thought of visiting elevates my mood
and brings a smile to my face
Sitting in chemo today
listening to the chatter
several elderly patients
back and forth discourse and discord.
I eavesdropped a little
hoping for a glimpse of wisdom.
Sadly, wisdom is not what I heard.
anger, stubbornness, self-destruction
That’s what I heard.
“They can’t tell me to quit smoking
just because I have lung cancer.”
“I’ll do what I want!”
“I’ve lived this long haven’t I ?
Why change now?”
My heavy heart sank and filled with despair.
there was no wisdom to gain here.
Misguided thought processes with lethal implications.
The Utilitarian in me asks why they are getting treatment?
The Judge asks if it’s.fair that they are taking a spot from someone willing to listen and change?
Their perception is foreign to me.
No one is forcing then to be there.
Is gratitude an unwelcome sentiment when there is a potentially life saving option?
I sit quietly, my grateful heart appreciating my doctor’s and nurses, celebrating my half way point.
Sometimes it’s hard
Hard to always smile
Hard to show a good face
Hard to have a positive attitude
But you know what’s harder?
Each of those
more destructive than the last.
Not for me I said.
Not for me.
I need all my strength
To fight the real enemy.
I looked around
and warriors were
what I found.
Young and old.
So many different
Some long and
Some mercilessly short.
No way to sustain their fort.
All with liquid weapons
The only way to raise
Against a mutual
Even as their strength
Still fighting their
Fighting to thrive
themselves or a loved on.
Until their battle is
I’m a tired little warrior.
Too much out of my control.
But the fight fuels my fire
And is good for my soul.
I try to ignore all the other things
Like bloating, balding, and not wearing rings.
I tell myself that it’s okay.
If I can’t recognize my reflection today.
I’m still in there. I just need to see.
That I have to go through this.
I have to do it for me.
You know, when I am all done with all this cancer stuff, when the last treatment is over, when the last scan has been read as clear, I will never really be done. What I mean is, I will have to follow up regularly for at least the next five years, if not forever, depending on how things go. It will be like a little shadow over my life probably for the rest of my life. There is a post traumatic stress element to having gone through any illness like this that is not likely to disappear any time soon. How am I ever going to have what seems like a normal ache or pain without overthinking it? What if that little ache is my cancer coming back? I already HAD normal-ish symptoms seemingly consistent with menopause and overwork….and they turned out to be cancer! Yes I know, I know, the growth was not a normal symptom, but you see what I mean about the rest of it right? You see? I am not even done with treatment yet and I am already pre-thinking about overworrying. Oh for heaven sake.
Being diagnosed and treated for cancer is in itself a stressful and potentially traumatic situation. Patients experience a whole range of feelings including fear, sadness, anger, anxiety and adjustment issues. There is such close association with cancer patients and post traumatic stress that the DSM-IV post traumatic diagnostic criteria were expanded to include diagnosis with a potentially life-threatening illness as a possible stressor significant enough to induce PTSD. The DSM-V PTSD diagnostic criteria allow for specific implications of cancer- related post traumatic stress, but there is still a lot more research needed in this area. Studies done by Mehnert and Koch showed that 54% of breast cancer patients viewed cancer as a traumatic stressor. Andrykowski and colleagues interviewed survivors of lung cancer and found that 37% viewed their diagnosis and treatment as a traumatic stressor. There are other studies that reflect similar results. Still other studies correlated the incidence of cancer related post traumatic stress to lower socioeconomic status, young age, limited social support or dissociative symptoms regarding the cancer experience( Not being able to recall any cancer related discussion with the doctor.) The bottom line is that cancer is considered a traumatic stressor by some patients. There just isn’t enough data out there right now to describe the entire course of cancer related post traumatic stress, but we know that it is out there.
So, now that we know it exists, what do we do about it? I think the key is integrating psychosocial support into the acute care phase and survivorship phase of cancer care. I think it is important to make therapy and mental health care directly available in the oncology setting, not as a completely separate venture in a different location. A lot of patients, myself included, have a difficult enough time getting to their regular oncology appointments, much less a whole separate group of appointments with a mental health professional. I think it is also important to take a detailed mental health and trauma history on every cancer patient from the very beginning. You need to know what background you are dealing with even before the intense stress of cancer treatment begins. If a patient already has an extensive trauma or psychiatric history, they are a set up for post traumatic stress with cancer treatment. Maybe if you are able to highlight that risk ahead of time, the patient can already be directed into mental health treatment before the stress of cancer treatment takes root. It is also important to continue to monitor distress and stress as treatment is ongoing. Ongoing screening for distress is already a component of the National Comprehensive Cancer Network’s clinical practice guidelines. There are specific pathways for management of acute stress, traumatic stress, and adjustment disorders. I think this is the very checklist that I have to go through every time I go to the doctor’s office. I also have a list of mental health support resources, but they are in a different location than my doctor’s office and it is still up to me to seek them out and make arrangements.These checklists and protocols are great, but they mean nothing in the grand scheme if the availability and connectability of mental health treatment is not easily and readily available. I still feel like it would really be up to me to bring up if I am having any mental health issues when I truly think it is the doctor’s role to watch for these signs even before I would bring them up. As a cancer patient, your mind is whirling all the time. You really do need some one watching out for you to clarify some things that you cannot clarify for yourself as readily. I am not saying that cancer patients are all helpless or anything. I am just saying that we may need a little extra support or supervision than most with everything else going on that potentially distracts us from caring for ourselves. Post traumatic stress is real. Now that we can identify it, we need to get better at addressing it.
Ok what the heck do I mean by that? Let me explain. As you may or may not know, I have cancer right now. I am choosing to view it as only temporary. Nevertheless, it has kind of taken the reins of my life right now. I have moments of disappointment, anger, sadness, emotional turmoil, helplessness, etc. You name it …..all the bad feelings take turns at a moment’s notice sometimes. I am continuously searching for some kind of recognizable pattern to restore some predictability and order in my life. Needless to say, I have not been successful up until this point and that has only frustrated me more. The good news is that I finally have stopped desperately trying to grasp for routine and started rolling with the punches a bit more and it has actually helped. I finally took a step back and evaluated what actually makes me happy and feel good lately. It took some significant searching at first and then I realized that the answer was right in front of me: Me making the decision to be happy and feel good was the number one thing that helped me be happy and feel good! It sounds ridiculous at first. I get it. What I mean is that the more direct and conscious effort that I make to preserve my mental health gives me the most bang for my buck toward my overall health and well-being. The choices I make to stay happy, productive and help myself and others help me get through the bad times with the chemo and my treatment. I will grant you, there is nothing cheerful or happy running to the bathroom constantly, waiting for who knows what to happen, but when I keep my mind on a goal or something that I am working on or the fact that I WILL get through this, it actually helps a little. I am not implying in any way that the power of positive thinking will erase everything that is going on with my life and my body. I am simply saying that when it comes to choosing between overthinking, wallowing and perseverating on how bad things are versus trying to focus on or accomplish even just one small positive thing in a day, I am going to lean toward the positive. If nothing else, it allows me some small measure of control in a very out of control situation. Have a fantastic night everyone!
This question actually has multiple answers and is a more complicated process than selecting a primary care physician. The usual selection criteria apply of course: 1) Is the doctor in your network? 2) Are they local and easy to get to? 3) Does their availability(office hours) fit your availability? 4) Do they have good reviews? 5) Do you know anyone personally in your family or friend group that already sees them so that you can get firsthand feedback?
These are good to go by when attempting to select any physician, bearing in mind that reviews on google can be written by anyone anywhere, even if they have never been in the office in question. Having family feedback is good as well, provided that you know the whole story surrounding their comments. ( i.e Grandma Martha hates Dr. X, but also has multiple no show appointments and owes the office a lot of money that they are rightfully trying to collect) You see what I mean? Even the seemingly best source of information does not compare to your own personal experience.
Having clarified all that, I feel that selecting an obgyn adds yet an additional level in selection complexity. Finding the right obgyn means finding someone with a communication style and listening skills that make you feel comfortable enough to discuss some of your most personal and potentially embarrassing issues. I mean, you can’t go discussing your vagina and hormones with just anybody. Hopefully you are able to find somebody that listens and “gets you” at the same time.
This is the kind of thing I strive for the most….the listening part I mean. It is so so important. Many of the women that I see are frustrated because they have spent years dealing with unresolved issues because they either did not feel comfortable mentioning them to their previous physicians or they were dismissed. This should never happen. Every single patient deserves to be listened to and, in my opinion, if they have an issue that you are not prepared to deal with, they should be referred onward to someone that can. The patient should never have to suffer due to your lack of comfort or familiarity with their particular problem.
I received a compliment once from a patient that I did not understand at first, but now I consider it one of the best compliments I have ever gotten. She said that coming to my office was like coming to a girlfriend’s house. At first I thought, what the heck does she do at her girlfriend’s house? My face must have registered my confusion for a minute because she went on to explain what she meant. She meant that I was able to make her so comfortable at my office that she was able to disclose and discuss anything and everything that she wanted to. That is my job, my sacred mission, and what it’s all about. Have a great night everybody!