Do you remember this song?

http://www.youtube.com/watch?v=JPR108kwNo4

“Where Have All The Cowboys Gone?” By Paula Cole. That is a blast from the past!

I pose this question? After twenty years on this journey with this ‘condition’, fibromyalgia/ Chronic Fatigue Syndrome, where have all the good, caring Doctors gone?

Of course we see “Greys Anatomy” on television and all want the renegades. We want the “McDreamys” and the “Greys”….. the Doctors with tireless vigor and passion who went to medical school because of their unquenchable thirst for medicine, not because they lust for the almighty dollar.

When I was a little girl my Doctor, Dr. Ray Owens, North Of The River, in Bakersfield (Oildale), California, was the same Doctor that delivered me, cared for my Mom throughout her pregnancy and cared for my Mom from the time she came to Bakersfield at the age of six years old. Dr. Owens never changed. He had silver hair, however, his face was not that of an old man. His silver hair was always in a military ‘buzz cut’ and he wore one of those old time scopes on his head with the light on it Doctors of old used to wear. He would always greet me with a firm but affectionate grasp of my face and plant a firm kiss on my forehead. This was well before the days Doctors could get a law suit for doing ‘such a thing’. He cared. He was the first human being to literally touch me. I was a bit sluggish when I came out, according to my Mom, and Dr. Owens spanked my bottom and got me wailing. So he also gave me a wallop, 😉 something also now that could be seen as ‘politically incorrect’ I suppose. I am glad he did, for if it were not for that first ‘spanking’, I could have been in trouble!  He nursed every case of tonsillitis I had (at least twice a year) and the only ‘specialist’ I was ever referred out to was the Ears/Nose/Throat surgeon that finally removed those pesky tonsils of mine, Easter break, when I was in fifth grade. Of course our parents did that to all of us kids so we would not have to miss school. As a parent I now understand the thinking, as a child, I saw it as my Easter vacation being ruined. Dr. Owens splinted my pinky finger when I broke it (twice), bandaged me, soothed me and  literally saw me through every illness, bump, bruise and sprain until my High School physical when I was fourteen years old. I have had a few come close; one Physicians Assistant almost dead on (M. Collette Carver formerly of Parkway Physicians in Vinton, VA and has now moved to the east coast of VA 🙁  ). However, no Doctor I have seen has ever been able to completely fill those shoes. They simply, do not exist anymore. If they do exist, they are very rare and I certainly have not come across any such Doctors.

Why the change in the way Doctors conduct their practice? I have some theories:

1. HMO’S: There are good things and bad things about HMO’s and PPO’s. It is nice to have a set co-pay for your Doctor visit with no hidden surprises. Though many things such as CAT Scans and MRI’S have to get prior authorization, I can attest to the fact that when it is a life or death situation, that all goes out the window. I went to Lewis Gale Emergency Room on July 1, 2011 with severe abdominal pain. I had to wait a few hours, but once in back and CAT scanned, they hit the ground running. I was CAT scanned at just after 3 AM on July 2nd and in an OR by 5 AM with a perforated intestine due to a bad duodenal ulcer where my bypassed intestine was connected to my pouch. They tell post RNY patients not to take NSAIDS for a reason. I found out the hard way. I was in ICU for three days with an NG tube for five days (the most miserable thing I have ever had in my life) and hospital for a week. The bill? $80,000. But the now retired Dr. Reif Kessler saved my life and I appreciate ever nurse, NA, orderly and volunteer that assisted me. These men and women are truly in their field as a labor of love. HMO’s/ PPO’s however, have greatly limited Doctors. There are so many restrictions and rules that they must abide by, it makes it difficult, if not impossible, for them to step or even think outside the box. It is my opinion that for this reason, it is easier to maintain a very business like relationship with their patients.
2. The “God Syndrome”: I think everyone has seen more than their fair share of Doctors that have “The God Syndrome”. I also call it the “Shut up and listen”;  “What you are saying is irrelevant”; “You did not go to medical school, so what could you possibly know?…. Even though you have lived in your body _____ years and know it better than anyone.”; “I don’t care to hear what you think.” and the ‘rush in… listen as …as then can *breathe real fast*…. write a rx… and I am outta here to the next room in five mins*.  Do any or all of these ring any bells or hit any nerves? Sadly, such as in my case with a few of my Doctors I have seen along the way. Some I refuse to ever see again and others, I am sorta ‘stuck’ with them. Now, I have a LOT of Doctors and I am NOT naming names. Some are GOOD, some totally have the God syndrome, some fall somewhere in between and some, God bless them, I believe do their best but are just so overwhelmed.
3. Specialties: Our insurance has a lower copay for seeing a primary provider than a ‘specialist’. The problem today, unlike when I was a child and save for my tonsil surgery, Dr. Owens was a ‘one stop shop’, most every medical condition requires you see a ‘specialist’. For my Hashimotos Disease it is a Endocrinologist (though my newest primary care has agreed to take over my thyroid care, THANK YOU!), a Pain Management for the management of your pain in fibromyalgia and a surgeon for the tangible problems of the neck that are going to require ACDF surgery at some point in the near future. Then there is the gynecologist for the ‘yearly’ though he does do surgery as he did my ‘partial’ a few years ago. There is a specialist for everything; for us, requiring a $50 copay at each visit! Back in the day one Doctor did all these things unless you were very sick. Going to a ‘specialist’ back when I was young meant serious business. If you have psychological help, you even see a counselor and a psychiatrist: one to ‘listen’, one to treat you for your medications. You see so many Doctors today, if you have health issues, it is difficult to form a bond with many of them. They see so many patients, they know you but are so frazzled, they cannot form that bond we long for when we pine for those Doctors we see championing for their patients on “Grey’s Anatomy”.
4. Legal Issues: Today in a “Law Suit Happy” society, Doctors walk on the never ending path of “medical egg shells”. In a society where you can sue a fast food company for having hot coffee, lawyers are just as money hungry in many instances and pounce on the opportunity to get the almighty buck. Doctors tread lightly. Many are afraid to “push the envelope” for fear of a malpractice suit. I know myself for every scan, test and poke I have, it seems I have to sign and initial a series of pages as if I were buying a major appliance. Just days ago my knees needed x-rayed to check how advanced the arthritis in them has become. I had to sign in two places and initial twice for x-rays that took five minutes. Most of the time we do not even know what we are signing. I can see both sides here: I feel bad for the rare Doctor who wants to have the freedom to practice medicine the way he/she sees fit. However, people that have had a slew of mishaps like we have with our dentist here in Roanoke and are truly looking into seeking legal action have their side. I think here it is a happy medium situation. We definitely have a law suit happy society but we also have Doctors that are frozen in their tracks, afraid to try anything new innovative.

I see a lot of Doctors. I have a *wonderful* gynecologist and he is probably closest to the “Dr Owens” of my childhood that any of my Doctors have come. M. Collette Carver LNP is a jewel! I am so very sad we lost her here in the Roanoke Valley but cannot fault her wanting to move to the coast. I would if I could! If you know me well, you know I am quite vocal about most of my regular Doctors. I have ‘issues’ with some but for the most part have the best of what I can get in the area. I feel ‘over-talked’ and rushed. I feel my fibromyalgia is being ‘managed’ but do not feel my Doctor GETS IT when I say there is just no money at the end of the month for warm pool or other alternate therapies. I would love to go into the warm pool…. trust me…. however, the food bill, gas bill, electric bill, Doctor bills, Copays, and other bills (no credit cards!) come first and there is just nothing left. Is that difficult for a six figure earning Doctor of Medicine to understand? Maybe. However, unless he/she was on a full ride in medical school surely they can think back to a time, long, long ago, in a land far away called “Pre-Med” and “Medical” school when beans and ramen noodles were substance and money was as scarce as fairies. What do you do? If you are in an area with limited numbers in a certain specialty and if you are in a comfort zone with your treatment, there is little you can do unless you want to travel to UVA, two hours north or Duke/Chapel Hill, two hours south. As a footnote, the average Doctor in Roanoke, VA earns $156,423.00 a year.

http://swz.salary.com/salarywizard/Physician-Generalist-Salary-Details-Roanoke-VA.aspx

Now I am not naming names, nor will I. However, I hope enough Doctors might see this and just think. We appreciate you! We do! However, we want to be treated like people with 1/2 a brain and people that know what we can and cannot do either by limitations of our own physical capabilities or our own finances. I recently procured a new Rheumatologist. I did this for a second opinion and to get answers as to why my hands are ‘pins and needles’ numb all the time and as to why I have been taking falls since about November. Bear in mind, I picked this person after careful studying and ratings research. I was quite happy with my choice. His picture showed that he had ‘kind eyes’. He was ‘nice enough’ but he looked at me like I had two heads. “Exactly why are you here?”, I said, “To get answers.”…. long pause….. “Well if Dr ______ is ready to proceed with the ACDF surgery……”. I have reasons for waiting. Most are quite personal. I will say, however, only ONE Doctor in this area of about 300,000 and two teaching hospitals will take my neck surgery. I am very happy with the surgeon, his expertise and his bedside manner so waiting has nothing to do with him. I explained and it made a little more sense. His take: the severe stenosis I have. WOW! I researched it.

http://www.webmd.com/a-to-z-guides/cervical-spinal-stenosis-topic-overview

Indeed cervical stenosis can and does cause the constant numbness I now live with and the falls I have been taking (jello leg) on a fairly regular basis. Why couldn’t the first Doctor have just answered that for me. It was all right there in front of him in the CAT Scan and MRI reports. He did not have the time and barked, “Get in the hot pool!”, “I think it is arthritis!”

I think what these Doctors do not understand is simple: We are NOT looking for another pill. We do not expect them to wave their magic stethoscope and ‘make it all better’. We, as intelligent human beings, do want answers. I have numb hands 24 hours a day, 7 days a week. Why? This is not normal. A middle aged woman should not be averaging three to five falls a month. That is not right. I know nothing short of intense therapy and/or surgery is going to ‘fix it’, however, at least knowing why these things are happening help to some degree.

Where have all the Doctors gone? Probably Los Angeles, San Francisco, New York, Miami, etc. I have many friends in chronic pain groups online and the ones who have found ‘gems’ or ‘diamonds in the rough’ have all done so after much hunting. It is safe to assume the best of the best can afford to go to the most influential and popular locations. Also the ‘best of the best’ are human. They are going to follow the money. I would, no matter how passionate I felt about my work.

If you watch NONE of the other videos I put on, you must watch this one. For USA people who do not know who this is, Robbie Williams is very big in the UK and also is the original singer and co-writer of the song, “Angels” which has been covered numerous times. I about did a spit-take (won’t say when) when he says, “But not St Johns Wort, cuz I can get that at Boooooots.” Boots is the UK’s equivalent to CVS/ Walgreens, etc. Thank you Robbie Williams for including nicotine as a drug, because it is! A very addictive drug!  I found this video by accident but had to include it because it is just too FUNNY!. Enjoy! Until next time, K.

http://www.youtube.com/watch?v=EH1VaQ0MAtU

First, Shame on me! I am so very sorry fellow fibro sufferers and other readers that I have gone so long without a post. My world blew up at the first of the year and I am just going to leave it at that statement. Suffice it to say, it has taken me until near Valentines Day to feel human again. Since this is not a blog on depression, anxiety and since those subjects and the events that happened around New Years (the things that happened had nothing to do with my husband, family, etc; just  things that overwhelmed, not just me, but even my calm husband), let me just say this: I really would have taken that five day migraine during New Years 2012 over what we went through New Years 2013. In any event, I promise, unless I am physically unable, I will never let this amount of time go by again without a post. This time, I want to touch on the collateral damage of fibromyalgia. Believe me, there is a laundry list.

So far I have discussed what life is like with fibromyalgia and who can get it (basically anyone). Now I would like to touch on the ripple affect or, as some might call it, the collateral damage of fibromyalgia. It is not just about pain. Fibromyalgia is characterized by widespread pain all over the body. The patient must have 11 of 18 trigger points for a long, sustained period of time to get a positive diagnosis. Fibromyalgia may also exhibit the following symptoms

• IRRITABLE BOWEL SYNDROME
•  OTHER ABDOMINAL DISCOMFORTS SUCH AS NAUSEA & BLOATING
• CHRONIC HEADACHES
• INSOMNIA
• SENSITIVITY TO EXTREME COLD AND HEAT
• SENSITIVITY TO: SOUND, LIGHT, TEXTURES, COLD POOL, CERTAIN FABRICS, SMELL, ETC.
• CHRONIC FATIGUE
• BRAIN FOG
• STIFFNESS: BOTH MORNING & WHEN STAYING IN ONE POSITION TOO LONG
• FACIAL TENDERNESS (MYOFASCIAL)
• DEPRESSION & ANXIETY
• NUMBNESS & TINGLING: ARMS, LEGS, FACE & HANDS

With this long list, it is very easy to see that fibromyalgia is much more than pain. In the last day, I just recovered from a two day migraine headache. In fact in my case, a fibro sufferer for nearing twenty years, the syndrome has progressed to the point that is has taken control of my life. Besides pain every minute of every day, I have every symptom on the list above. There are no good days…. only tolerable, bad and miserable. I try my hardest to maintain a positive attitude, but when you are lugging never-ending pain and a bag that full of side effects around…..along with extra neck pain from several tangible issues (things you can see on scans that can possibly be treated with therapy, surgery, etc.), it is difficult at best to be ‘positive’. If you are healthy or at least for the most part healthy and / or in the early stages of fibro (it is my experience that it a very progressive condition), try to imagine your worst flu when you ached all over. Imagine a time when you exercised too hard, painted the house too long or just plain did something that made you aware you had muscles in place you did not know existed. You felt like a human pinata after a gaggle of 5- year- olds beat the candy out of you. That is my life everyday. Now add a gut that feels like you did not pay your ‘loan shark’ and he decided to belt you a few punches. Imagine your husband has to fill in every fourth word in each of your sentences because your brain fog is so thick or you suddenly revert to kneeling like you were Catholic again each morning because you roll out of bed onto your knees, slowly push yourself out with a serious of “Owe, owe, owe…. owe….. owe!” Imagine walking with a cane before you even hit your fifties. Imagine shaking your hands numerous times a day because they are so numb they are in a constant state of pins and needles. Imagine dropping one out of two things you pick up. Imagine having to sometimes take 50-100 Immodium a week because of your IBS. That cannot possibly be good for you. Imagine the only time of day you have with your husband and crashing and burning because you overshot your energy trajectory for the day and ‘hit the wall’. This is my life, day after day, week after week, month after month, year after year. So, if I don’t seem like the most positive peach in the basket, forgive me, but walk my walk for a day, or just a few hours and you will understand.

The tangible damage is not very common but can occur when you are diagnosed very young like I was. My first symptom was numb hips, my second, neck pain. When my neck was X-rayed, they found the kyphosis (reverse curve) in my neck straight away. I was thirty one years old. However, I had noticed my first symptom at age thirty. Once they found this, and the specialists looked at this (not knowing yet I had what was then called ‘fibrositis’), I was told within twenty years I would have bone spurs, arthritis, degenerative disease and likely have some discs that would herniate or at least bulge. I have all those and more. The reason? I have such extreme muscle spasms in my neck, you can see the knots just by viewing my neck. The spasms pull on my Cervical Spin like the bow part of a bow part of a arrow. The neck can only take so much ‘pulling’ for so many years before it starts showing wear and tear. Now I am facing Anterior Cercical Discectomy And Fusion surgery

http://en.wikipedia.org/wiki/Anterior_cervical_discectomy_and_fusion

This is a bear of a surgery and only one Doctor in my area of about 300,000 with two large teaching hospitals would even agree to take my case. The other ‘big wig’ spine specialist in the area bowed out when he said I had the worst kyphosis he had ‘EVER’ seen in his career. So when you wonder why my shoulders lean left, why I am always turning my neck, why Paul is always rubbing my neck (it is nothing creepy, trust me!)…. you know why. This is a true case of  ‘scans do not lie’ and I know that the Doctor’s who told me this two decades ago were not ‘fortune tellers’ but rather educated specialists forewarning me of my neck to come.

I think the worst collateral damage of fibromyalgia is the stigma related to this condition. First there are still the back-woods people that ‘do not believe it is real’. Since 99.9% of every Doctor now agree, yes, it is very real and it is recognized by all health care professionals world wide, it is listed on everything from insurance forms to the DMV forms to  new patient forms at Doctor offices. It has been the subject of countless articles,TV shows, news spots, medical journals and newspaper articles.

The other stigma is family and friends. There is nothing more frustrating than to hear someone say, “I have fibro and I just ‘push through the pain’, I have no choice”. I pushed through it too. I worked for years, as long as I could. I drove one hour each way and started getting a pile of traffic citations and pull overs. One time I was stopped for weaving. I was as sober as a newborn and the cop knew it, but also knew I was exhausted beyond being safe to drive. He stayed there until my husband picked me up.  You do not embellish that level of exhaustion and no, it was not my medications because they do not make me sleepy…. if anything I have a problem getting enough sleep until I get so exhausted, I have a ‘crash and burn’ one day and take an eight hour nap.  Now I make this very clear….. my rollover was an accident, my tire blew and I was not cited in that by the police because they were aware by the car, marks, etc that it was an accident and not a driver fault situation. Luckily today, as a full time disabled person, I do not drive unless I am fully rested and our insurance just dropped as many of these citations dropped off my record. We actually checked around, got a better price and it is now $70 less a month ($50 dropped off a month with old insurance). However, this is just another example of not only the collateral damage, but when you go from workable to disabled that you do not have to risk driving while tired. My fibromyalgia is not ‘your’ fibromyalgia. My treatment protocol  has been carefully molded for me.  Just as your treatment protocol has been carefully chosen for you. Because I am post gastric bypass, I cannot take NSAIDS (aspirin, ibuprofen, aleve, etc). This is a challenge but I would rather have a lower body weight than be able to take ibuprofen. So it is not right to assume I can ‘push’ through it when I would collapse from exhaustion. I know my limits. I have walked this walk for 2 decades and have impressed numerous Doctors, LNP’s and other health professionals with both my knowledge of my health  including having a list of my medication typed and ready for new providers during my first visit to a new Doctor. My pain is not your pain. My fatigue is not your fatigue. When my Mom passed, I spent those days in California in an exhausted haze. My body was already behind by being three hours (time zone) ahead, but one of the nights (it was a Saturday; the night before the memorial and also before I would fly out of LAX Sunday night to come home on the Red Eye). My cousin Shelly called and told me to come over to her house. She was having a get together and frankly I could have used some fun and laughs. My soul was so… oh soul willing, the body; not so much. She told me to grab a Red Bull and come even though I was exhausted. I told her I had been in wrecks when I was this tired. She understood. I grabbed a Subway, went back to the person’s house I was staying with (my Step-Sisters/Brothers Mom) and ate, only not so much as my hostess found me at  8 PM asleep over my sandwich. That is my exhaustion. Granted it had been both a physically and very emotional few days, I was spent. Shattered. I spoke to my husband for a few minutes after awaken and slept from 8 30 until the next morning…… unheard of for me. It is frustrating to be misunderstood…… to be judged….. to worse, have people think you are a ‘drama queen’ or ‘attention seeker’. No. Frankly I do fine with NO attention. However, I will not stop in raising fibromyalgia awareness until people understand and accept this condition the same way they do MS, lupus, diabetes, heart disease, or any other disabling, life-altering condition/disease.

One last thing I would like to touch upon is how fibromyalgia affects your marriage/relationship with your partner. This depends on both people. First, I am married to a saint. My husband Paul works two jobs. He works his forty hours at his “nine to five” job and also delivers pizza two nights a week, on the weekends. It does help that he likes both his jobs….. I have never seen him dread a day of work, ever. However, that is quite a few hours he puts in, without complaint. He also helps me around the house. I tried to pick up a lot of the slack, but I just cannot do any of the heavy cleaning. He pitches in, cooking, laundry, pooper scooper for the cats, etc. without complaint. Then, at the end of all this, he tirelessly rubs my feet, shoulders, neck, arms….. whatever is hurting most that night. Several Christmases ago, he bought a book on reflexology for me so he could learn this ancient art. Who does that? He bought a book for me so he could learn how to sit there all evening and rub feet while their spouse says, “Tonight I need you to hit my gut receptors”. In the same sense, I encourage Paul daily. I try to lift him up for all the wonderful things he does. I encourage him all the time to get time in for his hobby, black and white film photography (and boy, is he quite good at it!). Time is one of our tightest assets so I really do encourage him to try and get some pictures in and make sure he has time to sit in his cave several nights a week… even for half and hour and work on editing his pictures. It runs both ways. It is imperative that a fibro sufferer have a supportive partner, but the fibro patient cannot ‘hog the blankets’ and must be supportive of their spouse/partner and give that person time away from just standing by and watching the person they love most hurt so much and not be able to do a thing about it. It is very hard for them….. especially men as men are ‘fixers’ and want to fix this problem.

I wish I had great words of wisdom and comfort. However, I don’t. I do have a friend that went into a complete remission with fibro and to this day remains fibro free. I actually went into a short (about 6 month) remission….. it was wonderful…. and I will say the common denominator with my friend and myself is that she was taking Lyrica and so was I at the time. However, Lyrica has the potential for weight gain and I was not real happy with it for a few other side effects, so I quit. That was my experience. I want to stand clear, I am not saying Lyrica is a ‘bad’ drug and if for no other reason you have never tried it, you may just want to run it past your Doctor.

I will say fibromyalgia, at least in my experience, is very progressive. I am far worse than I was five years earlier and five years ago I was far worse than I was five years before that. Again, it does not mean it is progressive for everyone, it might just be me. 😉  Maybe it is just because I am not a ‘spring chicken’ anymore…. more like an ‘autumn chicken’. Wherever you are with fibromyalgia, I encourage you to educate yourself, educate, educate and educate. Talk to others with fibromyalgia but don’t get caught up in the people that ‘give up’ (I have not and never will until God calls me home). I am disabled, but would love nothing more than to get my life back. Stand your ground around the hateful people that try to drag you down. Most of all, may the Lord bless you. This scripture from the Bible is one of my mantras. I have been a little ‘upset’ with God lately. We all get mad at our ‘parent/s’ at times. But I am confident that my latest struggle (again, personal but not an issue with family, etc)….. I know He will fix it and it will be OK in its time. Until next time, K.