Taking Control – Not This Treatment

Taking Control – Not This Treatment

I have always had tremendous respect for the medical community but living with two incurable less recognized conditions, I have had a tough time being believed. Many in the medical profession do not possess the humility to accept the fact that patients with rare or unusual conditions may possess more knowledge of their condition than they do, which often leads the professionals to question the credibility of the patient. Patients often find it difficult to find doctors willing to take the extra time to help, given the pressures that exist in our medical system as it is currently organized. Over the years, I have learned that I don’t have to do all that my treatment providers recommend. No one knows your body better than you. I have had to search for my own network of help and it has taken years to develop that group chooses to make the effort to try to understand my conditions and then buys into Ehlers-Danlos being real and caring to learn with me on how to improve the quality of life by seeking effective treatments which often require accepting novel and unconventional treatments with it.

Ellen Lenox Smith

One motto I have learned to live by is: “If trying something can’t hurt me and might help me, then it is worth considering.” I have gone out on a limb trying prolotherapy, rhizotomy, a jaw brace to stop the jaw from dislocating, surgery with cadaver tendons, for example. I would rather try something new than give into my condition and not search for ways to improve life.

Due to severe osteoporosis, caused by my EDS condition, I have tried so many options to strengthen my bones. I have exercised for years, both swimming and when able, walking. When it appeared, I was beginning to show signs of bone deterioration, I included adding weights to my routine. However, a year later, I learned that it had made no difference. I went from osteopenia to full fledge osteoporosis. It was disheartening to hear. So, based upon the results of a study undertaken by NIH which found the drug Forteo effective in treating osteoporosis I injected this drug into my abdomen nightly for almost eighteen months. The results again were negative – my bones got worse. So on the recommendation of my doctor, I would try Reclast infusions for about five years. And again, no positive changes, year after year. So, we then turned to twice a year Prolia injections. Once again, the results were negative – my bones continued to deteriorate despite exercising almost daily, trying all these medications and eating well. EDS was the culprit. So, when the endocrinologist suggested doing more Prolia, I looked at him and told him, “I am done putting any more medication into this body with no positive results.” He politely listened and didn’t argue with me despite clearly wanting to keep trying to medicate me. He knew the truth too; we had made no positive progress after trying for years.

Sometimes, we get to the point of making decisions to stop treatments. That is our prerogative to make that choice with our bodies. It isn’t that I am giving up, but instead, I have reluctantly accepted that there may not currently be a treatment that is effective in my case, accepting we have tried for years numerous treatments with no success. I had not gone to the appointment prepared to say this to him, but when I heard the same negative results, I realized that was it – I was done putting anything else into this body for the bones. I instead will keep exercising, eat well, try to stay positive and keep my eyes and ears open for something else down the road in case there is a possibility of a new treatment or approach to this condition. And to be honest, it was a freeing feeling to come to this determination. I have also made the decision that if cancer ever hits this body, that the conventional chemical treatments would not be worth it for me personally due to all the reactions I go through with medications. I know to some that may sound like giving up and selfish not to embrace the notion of extending life at any cost, but I would rather have some control left in my life to hold on to. Many patients with my conditions do not do well with treatments and medications, which is where I fit in. I am not able to metabolize aspirin, Tylenol, and any of the opiates for a small window into my extensive list of reactions. I would rather spend my last years without having to face reaction after reaction. We all to have to make those personal choices and try to be at peace with what we decide, to the best of our ability.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Ann Sable

I too, have been dealing with escruciating pain since 1996 due to a horrific auto accident because of a drunk driver. I was fresh out of high school and the whole shaabang. At first, I couldn’t walk for an extended period of time and was blown off with nothing note than, “You’re too young to have all these problems”. Two straight years of PT, 5 days a week at 2 different places. I had only gotten worse, not better. The only thing that did get better was that I began to walk, but that was before I went to PT. I was so messed up inside that when I did get pregnant with my first child, I lost her twin in the 1st trimester and was bed ridden for 7 mo for my 2nd (tubes tied right after because we both almost died). I had to have a hysterectomy at 27 because the damage was killing me quickly. I have lost count, as to, how many surgeries I have had since I was 19 being that I’m now 42. But, I do know that in the last 6 years, I have had 12…none of which needs to be done with my hips, rotator cuff/1/3 tendon left, cervical and lumbar injuries. All were internal organs being removed, gallbladder, 2 ft sm bowel, ovaries; the works. My abdomen has been cut open vertically 4x w/reconstructive surgery also. I am without any help for pain and have been for several years now because of all this hype. I also gained severe myofascial pain syndrome from it and the surgery to cut those nerves failed. I am a severe migraine sufferer due to my cervical issues and will not engage in any of their new meds either. I’m done being a guinea pig also. They just keep giving me the same stuff that they have already tried on me and failed and those that I’m severely allergic to. I am very limited to what my body will allow due to short bowel now (not too far off from short bowel syndrome if the drs screw up once more). No NSAIDS whatsoever. What am I to do?…suffer. To all of you who are suffering, know this: you are seen, heard and felt, deeply. All the love to you!

Toni

I completely am exactly where this wonderful writer is at as well! I had 4 1/2 years of therapies after my car wreck that cost me a fortune and did nothing. I cannot go to pain clinics b/c of this same reason. I refuse to be forced into trying drugs or treatments that I don’t want in the hopes of getting pain help I have to dance for! I won’t do it. I can’t. So I suffer daily with 4 chronic pain diseases and no one cares in that world. Its worse than being torchured.

Holly Davidson

Great read Ellen! I have osteoporosis and have degenerative spine from my neck to me tail.I am done being a guinea pig! but these Dr. don’t get it!if you are not willing to do this or that, you are considered a drug seeker.
I also had a botched surgery in 1992 from a laproscopic gallbladder removal. 5 reconstuctive surgery and 1/2 my liver removed I am still have so much pain due to the anastomosis and scar tissue. recently i had a BAD attack. 2 of my other Dr.s told me to go to my pain dr. to get a lil more help with my meds because I was a little short. They would not help me! What are we supposed to do?????
I tried prolia………the side effects were so bad and once you get that shot, it’s not like a pill that will wear off. I suffered for months! NEVER AGAIN!
My trust is Dr.s is shot! Oops, except for 1…my very caring gastro Dr.

Thanks for the good read!

Ellen Lenox Smith

Karen P Thompson – try using the Cusack protocol – supplements to replace what our EDS bodies don’t have – I have healed better, held better and felt stronger than ever – it was created by doctors and scientist working with a woman who wanted a better life for her EDS daughters and herself and they have gone from neck braces and wheelchairs to rock climbing and cheerleading in time.

Hi Ellen , I too have severe osteoporosis. I have tried everything and it did not work. I was in the minus 4 range on my bone density tests. Two years ago they got me to try Reclast. The first year I had some improvement. The second year my spine got better (still too low though) but my hips got worse than the base score they did before treatment. I am to get another dose, the third in Dec. I do not know what my bone score is right now because I am not allowed to have a bone density again until 2020. Most bone building medicine as they call it does not work. It is interesting to me that they do not treat the condition that causes the bone loss in the first place, in my case they do not know the cause though.

Theresa L. Negrete

Ellen I enjoy and have gleaned from your writings. I don’t know if you’re aware, however, Prolia and other bone building medications have lawsuits happening now against them.These medications have been proven to do damage, instead of the bone building they have claimed.

Ronna watson

Ellen, I totally understand and have experienced the same poor experience with the healthcare ‘industry.’ If it werent for my own research and mostly creating my own managment plan, I would be much worse off. I am disappointed that my doctors ( with regard to a variety of issues), didn’t even steer me to other professionals who might have been able to help. I found specialists and treatments on my own. I am very frustrated with the lack of help from most of the healthcare providers I have seen. I was a midwife before retiring so I know how to navigate the system and do research on my own. Thank G-d for that because I have pursued things on my own. Some doctors resent ( insecure and lazy ones) if you take to google to learn more about your condition and your options. I tell them up front that if thats going to be the case then maybe we should part ways. I always wonder how people without a background like mine get any decent help at all anymore in this fractured healthcare system. Doctors today seem lazy and uninterested in helping you if your situation is complicated at all. I wish you well. Sounds like you are on the right track. Try whatever seems hopeful. This may not help you but I may have found the way to treat my undiagnosed neurological problem and my interstitial cystitis through diet. I went on the keto diet because it is supposed to be neuroprotective. It also happens to be gluten free. I am in shock that it has helped so much! I only mention this because I just came to it on my own in an unusual way. Keep your antennae up for what might come along for you. In the next couple of years, when stem cell therapy and genome therapy are covered by insurance, we may be in a different place. Hang in there sister. Don’t give up. Listen to your gut!
Ronna Watson

Ellen, another good and insightful writing. Thank you. The longer we are patients the more we experience and learn about our bodies and the right treatments for us individually. And that is why I am famous for saying repeatedly that ‘doctors truly need or ought to listen to us…because we have become the pros at our own conditions’. I truly believe, that after all the trials and errors that I’ve been through with my medical care over the past 20yrs, that if a doctor would really listen to me then we’d save a lot of time and and gain better results.

Kris Aaron

I’ve decided that at my age and after nearly two decades of chronic pain due to a neurologic disorder I WILL NOT be a willing test subject for the medical establishment. Trust goes both ways: If doctors don’t trust me to take opiates responsibly, why should I trust them to have my best interests at heart?

Mrs.Smith, this is a excellent article. I have done this myself rejecting additional medications because of reactions. What surprises me the most is that Physicians push these medications as if it’s a miracle but to the patient the reaction to the medication it’s not worth the suffering. And when you explain this to a physician it seems like they don’t want to accept the rejection. Please look up Prolia. It has been known to cause damage to the bones. I think it would be in everyone’s best interest if they look up the medication and its side effects before they take it instead of totally relying on the Physicians recommendations.

Hello Ellen,
I read the articles that you write for this blog. I especially can relate to this one because I am having the same predicament with bone strentheners as you were.
My name is Karen, I am 58, and I have hEDS. I can attribute practically EVERY surgery I have had to date to hEDS.
In 2008 I had a lifting accident that left my lower back in bad shape. In 2014, I had to have 2 lumbar surgeries in L4-L5, and L5-S1, called a TLIF and a PLIF. My Neurosurgeon found severe osteopenia in my lumbar, and he told my husband after my 8 hour back surgery that my “bones were so soft that he could have scooped them out with a spoon.” My joints in those areas were supposed to have fused by now, 5 years after surgery, and they haven’t. I was told then to use the Forteo shots for 2 years. So I did the shots, and after somehow hurting my lower back, and my middle back again recently, and having to get another MRI, the ER doctor discovered that the PLIF (F=fusion) hadn’t fused and is about ready to rupture, again!
Now I am to discuss, not only another lumbar surgery to fuse my lower back with my neurosurgeon, but also more medication treatment with my rheumatologist to try to further assist my lumbar vertebrae to fuse. The Forteo did not work, and Prolia and Reclast will more than likely not work either, due to my hEDS. What am I to do?
Do you have any suggestions, or recommendations? Do I give the other bone strengtheners a try? Do I not? Please, let me know your thoughts, and/or what may be working for you now. Thank you.
Karen Thompson

James Dandee

I see nothing wrong with choosing to take no action over action that can and maybe even has (in many others) had very negative effects. I made the choice years ago that I will not go the chemo route and/or other routes that may save my life while at the same time, making me weaker and possibly hospitalized for what would be the rest of my life. Many of us have spent far too much time in the hospital and know that even though we are hurting and worse, find it better to do so in our more comfortable surroundings as opposed to being poked, prodded, and bothered for blood samples at all hours of the day and night.
Too some it may seem selfish but after all is said and done, it is our life and we have the right to live it (and in my opinion end it need be) however and whenever we see fit.

While there are many that put their faith in deities, objects, and multitudes of other things…I would rather live my life with faith in myself.

Marla

Well said!!

Cora

While I don’t have your specific condition, I can totally relate to your situation, giving almost every reasonable treatment a try until proven that it is of no benefit. I too have wrestled with the decision of stopping a treatment when it is obviously of no benefit and or is causing my symptoms to be worse. Currently, I have been trying Prolotherapy with little to no benefit and having to tolerate pain flares of 1 to 2 weeks post injection only to return to have Prolo injections repeated every three weeks for the last 14 months. I find it to be a terrible position to be in when I am the one who has to put a stop to a treatment when it is no longer working or never worked in the first place. I risk alienating the doctors that are supportive of me every time I make a decision for myself. Never in my life have I had doctors impose their believes and values upon me like now. I have had to deal with doctors that have had their feeling hurt or are angry with me because of the health treatment decisions that I have had to make. It seems that with the treatment and care of the chronic pain patient, the doctors take more liberty and if you choose not to do a treatment, or stop a treatment or drug then you are judged negatively as being non compliant or difficult. At least that is my experience. It causes a lot more stress and stress causes the pain to be worse. I am baffled at the shortage of time and compassion from many doctors treating chronic pain patients these days. For me it’s never been wonderful but now its a ‘my way or the highway’ approach with medical care since the ‘illicit Opiod crisis. There just needs to be a reset in the way all medical care is provided and that is to first respect the patient and treat every patient with the same compassion and provide the best quality comprehensive care that one can muster. Quality care must begin with a mutual trust and respect and sadly this has been broken. Medical care never should be enforced care ever.

AnonyMouse

Ellen, they may not have known this when you started Prolia, but
“Patients need to be advised of the increased risk of bone loss and vertebral fracture when therapy is stopped. If denosumab needs to be stopped, it should be replaced by an alternative osteoporosis medication to help prevent rapid bone loss and risk of fractures (Symonds CMAJ April 2018).”
It’s so important to be able to say no, but you also have to know the risks either way. I feel trapped on Prolia now, because of the risk of stopping it. I also took Forteo for the recommended 2 years, then switched to Prolia. I’d like to stop it, but don’t want to risk worsening. I also have EDS. What happens to any individual patient is unpredictable, so you are right to make the best decision for you, and no one can tell you what that is. I took a break from Prolia, and during that time, this info came out. Back on it! Best of luck.

Cindy too

continued from my first post –

Ellen, here is the list of supplements I currently take for bone health –

Ipriflavone – 200 mg 3x/day

Vitamin K2, MK7 – 200mg 1ce/day

Strontium (strontium citrate) – 227mg 2ce or 3x a day

Vitamin D3 – 5000 iu’s 1ce/day

Calcium softgels –
as needed depending on daily diet and if I get enough from almond milk and nutrition drinks, then I dont take any. It’s been shown that calcium from food is much better than from supplements.
each softgel = 333 mg Calcium (elemental as carbonate, citrate, gluconate, aspartate, malate, micronized hydroxyapatite) + 1000 iu’s Vitamin D3 + 10mcg Vitamin K (phylloquinone) + 400mg magnesium (elemental as oxide, aspartate, citrate) + 1mg boron (elemental as gluconate) + 25 mg horse tail (extract e arvense)

I also take a lot of other supplements for various health reasons, and a multi which contains a lot of minerals.

It may be a waste of money, but I buy only high-end supplements that supposedly get absorbed into your body at a much higher rate than many lower end brands, and also that don’t have additives which may “annoy” my body.

And, if you’re looking for one particular vitamin/mineral — like K2 or D, it’s super important to read the fine print on the labels, since all too often, in the fine print list of ingredients, lots of other vitamins etc are listed which you wouldn’t suspect from the big label, and for me, I dont’ want that since I want to control what I’m taking. Like, taking too much of a fat soluble vitamin like D can cause problems.

Some of my doses depend on the brand — what dose a brand comes in.

And, whether I take 2 or 3 stontium pills a day depends on my diet. Stontium shouldn’t be taken w/ calcium, and since many of my meals consist of nutrition drinks containing a lot of calcium, I work around that. If lunch is a drink(s), then I try to remember to take a stontium later on, but dont’ always remember.

Hope this helps.

Cindy too

Ellen, I have some supplement info for bone health that may interest you, if you aren’t already aware of them. I list what I take below, after telling my own bone story.

Like both my sisters, I’ve had osteopoenia since probably my 30’s.

( I was diagnosed in my early 40’s after nagging my PCP for a test, after my slightly older sister had been diagnosed with it during fertility treatments. Then, my younger sister was tested and diagnosed in her late 30’s. Oddly, my late mom who always denied having osteo anything, told me a few years ago while in her late 80’s that she’d never been tested, and I now believe that she had severe osteoperosis due to her disc issues etc. )

Anyway, I take a bunch of supplements for bone health recommended by some naturopath/holistic practitioners over the years, and I’m convinced they help a lot.

I had horrible acid reflux reactions to fosamax and actonel and so never used any type of regular Rx for more than a very short period 20 years ago, and, I’d also been told that using those meds could damage your bones and make them more brittle in the long run by depleting nutrients and so best to avoid them anyway.

Due to my horrid chronic pain, I lead an incredibly sedentary life, and my GYN, who is now in charge of my bone density scans, and I both were positive 2 years ago that this latest scan would be full blown osteoperosis. But it wasn’t, and while one part of my bones was slightly worse, another part was, amazingly, slightly better.

Due to imposed space limits, I have to list my supplements in another post. So, see my next post.

Mary W.

Ellen, how unfortunate that a sub-set of controlling clinicians overlook the Social Security Admin’s BLUEBOOK which identifies all conditions with mention of pain, whether severely acute or chronic. Pain hurts, period!

Terry

Ellen I couldn’t agree with you more. Doctors do have a lot of solutions to a lot of problems, for a lot of people, but sometimes you just have to say enough is enough and take your own path using your own life experiences and common sense. If I had done what my orthopedic surgeon had pushed for I would have had 2 or 3 more major surgeries on my legs. It was because my surgeon and the infectious disease doctor both told me after surgery, that I had a bone infection and needed surgery to remove my prosthetic, get a PICC line inserted, do twice a day IV antibiotics for 8 weeks and finally, after my “bone infection” cleared up from the antibiotics, I would have yet another major surgery to reinstall a brand new prosthetic, not to mention the 6 months of physical therapy. In my heart of hearts, deep inside of me, I did NOT believe that I had a bone infection, I did a lot of research and came to the conclusion that I had something called red man’s syndrome, an allergic reaction to the vencomiacin, antibiotic beads, that they put just under my skin during the last surgery. The best test to check for a bone infection is a bone scan, so I asked the doc to give me a prescription for one and had the test. Would you believe it? It came back perfect, no infection! After 19 surgeries on my legs I think I had a pretty good sense of what was going on with MY BODY. So my advice is, LISTEN TO YOUR BODY, learn to trust yourself. Anyways, that’s my way of saying, I agree with Ellen 100%. God bless you all.

Jamie

Would be nice if the author mentioned that refusing treatment of one kind or another can get you dropped by your dr. I’ve had it happen several times, but the worst was when I got 6 referrals from 1 GP and when I said i couldn’t afford to see so many drs the GP said i embarrassed her and dropped me and went even further and refused to see anyone in my family.

It happens with startling frequency. Be careful folks.

DANIEL FOLTZ

I have seen you around this National pain report for some time. I need to tell you that you are an inspiration to me in that I need to know that others go through the same or worse then the things that I go through. My wife and I both suffer severe chronic back pain. I lost my regular doctor because he got arrested several years ago and have been struggling to receive the proper care from other doctors ever since. I’m still able thank God to hold a job to support my wife and family. I do not need to tell you that helplessness that I feel when I find out that the person treating me is leaving the practice in which I go to. Our Lives revolve around our medical care provider and their willingness to listen. So I do understand what you mean when you talk about the humility of doctor’s. If I lose MyCare I will lose everything my job my house my Independence most of all my self-respect. My heart goes out to you and I will pray for you for you are very strong. I need to find a doctor that understands the synergy of the use of marijuana along with opioid treatment. It is completely insane that I have to get drug tested and then I use marijuana as a part of my treatment for improving my life when I have taken so many things from me already. I used to argue why can they take something away and not replace it with something else. However I was up all night last night was my nerve pain so excruciating that it brought me to tears many times. I don’t know what will become of me all I want is to live my life and you have hey doctor that will take care of me as far as my pain is concerned. Why it is the government as not found that marijuana and pain medication equals less pain medication is beyond the realm of what I would View as reasonable. Anyway I just wanted to thank you for your many articles an inspiration. Please do not take this wrong but I kind of find comfort and knowing there are others out there you suffer far greater than I. It reminds me that I am not the only one

LMC

In search of a cure I agreed to do crazy doctor recommended treatments that only made my condition worsen and actually caused it to spread! When my doctor suggested a dorsal column stimulator (already knowing I had 3 previous fails with them) he ignored my refusal and required me to see a psychologist to move ahead with the 4th one. I went to see the psych doctor, Dr Rich. When I told him all the things I had done before, including the prior 3 Stimulators, he asked: Why are you trying to get a 4th?! I explained that I had already said no but the doctor insisted and if I say no he will probably drop me and finding a new pain doctor was a nightmare and if I found one I probably would have to do it anyway and with a lot of pain docs on your list no new docs will take you.
Incredibly, he told my referring doctor that, in his opinion, to do any further surgeries would most likely be detrimental to my psyche and he could not give approval to insurance company. He then called in a referral to another pain doctor. He spoke to that doctor in depth about me (while I was sitting there) my new pain doctor is amazing. I continued to see Dr. Rich as a doctor until we became friends and just visited during my appts, mostly about him and his family. I am grateful for him everyday.

Jackie

I agree with you, Ellen. Unfortunately, medical practitioners don’t have all the answers (although they often think they do). We are the ones that have to live with possible side effects of various treatments, not the doctors. I am CEO of my body. But it took me many years to come to this realization. Best wishes to you.

becky

ELLEN,
EDS and osteo folks here. Using a shared PT Stick this morn trying to unloosen and decrease pain.
LYME on top makes life unbearable pain and no hope of a mate in life for my daughter.
Please be sure to get an IGENEX Lyme test as EDS and Lyme have overlapping symptoms.
Have you tried phosphorous liquid supplement to build bone?
It was suggested to me recently to take estrogen for bones and fatigue but being a breast cancer survivor, am reluctant to do so.
I did learn my anemia may be from all the advil I take as it puts “holes” in stomach. Tylenol as we know very bad on liver.
Lyme is an epidemic now which worries me since the pain and suffering is suicidal to many. Take the EDS pain and double it at minimum.
Our children need to have a chance at life. For EDS there needs to be more awareness to help children early on with braces, clean nutrition, ways to handle difficult tasks.
With LYME there needs to be more research and the insurance companies to pay for the Igenex blood test which tests more bands than the bare three bands on a generic Western Blot blood test.
In the end people with either of these who can benefit and have some quality of life, should be able to get pain relief thru our miraculous medicine that now is being withheld or reduced.
God bless you, now get that test.

Laurie

I’m with you, Ellen. You are a brave woman and I respect you so much for sharing with me and the others here your stories of struggle.
Unlike you, I have NEVER trusted nor admired American Medicine or the doctors/dentists, any of them, really. It was with great horror and sadness that I found myself at their ignorant mercy when my previously healthy body broke down with an incurable genetic condition of Dystonia.
They still don’t have my diagnosis right. I don’t have “ST”, I have Segmental Dystonia. Even my best neurologist kinda laughed when I said it. But, it should have been obvious from the start.
I too am very sensitive to drugs, but now, they’ve abruptly terminated even the diazapines which helped me sleep. Sleep has always been my main pain control, now, they’ve labeled me a “drug seeker” or, probably a Benzo-junkie for trying to fight to be tapered in the FDA approved, supervised way. I’ve heard the warnings for years.
I am appalled at my treatment or lack thereof.
I can’t tell you how many prescriptions they tried to force me to take and I threw away!
I don’t know what, exactly is happening to me by being treated so horribly but It ain’t good, I DO know that.
I’m ready for the next adventure and I may not have long to wait, the way my broken heart feels.
I’m 70 next month. May the AMA, ADA and all the rest rot in the same hell they put me in

Thomas V.

Ellen, have you tried a more ‘natural’ approach to your bone loss? Magnesium, vitamin D and vitamin K2 may be a ‘magic bullet’ for you. Good luck and better health.

Marie Foehl

Ellen I want to thank you from the bottom of my heart for taking the time to write about your condition and your experiences. I was injured at work 19 years ago, I suffer debilitating pain in my neck and left shoulder, lost use and range of motion on left side. I also have osteoporosis and I am on something to strengthen my bones. I tried all kinds of different things to improve my conditions. In the past 21/2 years I developed another condition that is effecting my lower back and left side, including my GI track. I have been bedridden and house bound for too long now. I have insisted on had every test to get to the root cause but the medical profession has no solid answer. I hear “try this medication come back in a month”. In the mean time I’m left to suffer with no help from what was prescribed. I think if you don’t have a cut and dry textbook condition they don’t know what to do for you!
I feel like I’m left on my own to struggle to find out on my own. I’m at a point in my life that I know my body more than anyone else and how medication, diiet, therapys and procedures etc that I have tried have worked and not worked or worsened my conditions. It’s difficult to find a doctor that really listens to the patient anymore. I’m not afraid to say no to a doctor and give them my reason why. Not everyone is a cut and dry textbook case, we are complex human being with real illnesses and conditions.
I admire your strength and respect your decision to take control of your life and your health.

Thanks so much for sharing your journey!
Wishing you all the best!!!
Marie

Gail Honadle

I reacted to the first dose of Fosamax, a A Fib trip to the ER. After researching all the OP drugs I came to the conclusion they were to dangerous to take. I turned to the old fashion Vitamin and Mineral treatment, buying individual ones in high does. It is not simple as there is no given formula with all the ingredients your body needs looking up what made a baby’s bones grow and multiplying that out for an adult who is 5 ft tall. Many are trace elements. Strontium Citrate and Vitamin K2 complex where the 2 main missing ingredients, that doctors don’t know Jack about. Besides the D3 and the NON Rock form of Calcium a Citrate, Magnesium Citrate at half the 1,000 mg of the Calcium. Magnesium Oxide is NOT well absorbed.

6 yrs later with the exception of the hips and 1 area of the spine which is highly degenerative I’ve reversed the OP to Osteopenia. This is the 1 book I relied on for most of my information. Your Bones: How You Can Prevent Osteoporosis and Have Strong Bones for Life―Naturally Paperback by Lara Pizzorno. Got it from Amazon.

R. Michael Maddox

I have found that MANY doctors don’t understand some basic, simple illnesses and diseases. When doctors go back to TRUSTING patients to say what works and what doesn’t, we will ALL be better off. Most doctors think that the ley person is STUPIID when it comes to medical issues. If one is too articulate about symptoms, medications or knowledge of their illness, they seem to think “drug seeker” or hypochondriac. I am VERY lucky to have a V.A. doctor that listens and works with his patients to find the BEST treatment possible for us.
Here is hoping ALL, a low or No pain day and finding medical professionals that trust in you.

Barbara Snow

My dear Ellen, you have fought the good fight. And not one person, on the planet should say any different. I for one am so proud of you. I could not have gone through as much as you have. Only you can decide what is living? What it means to you. And what it doesn’t. May you walk in peace for the rest of your day’s, whatever they may bring your way. May your support group stick close, and may I find mine. 🙏 Please keep writing to us. You are loved by many. You are one of our angels. 💜

Annie borgenicht

Ellen. I admire your strength and ability to raise these questions of not treating your cancer at this moment. I have read your posts and grateful for your honesty and sharing
I have lived with chronic pain for 35 yrs. which began in my 30s while working as a nurse. I have supported many people living with cancer and feel strongly that we each have to live with this epidemic in our lives in our own ways.
Thank you for your honesty and sharing and all the good work you do for us all.
I send you healing and strength to heal and live life as fully as you can.

With love, Annie Borgenicht.

Anne McCallum

Thanks Ellen Lennox Smith for your words of experience and wisdom. I’m sorry that you have to go through this. In my case, when all else fails…I pray.
After 62 years of very strange health issues including, 10 surgeries, two strokes and cancer twice. I and my rheumatologists are figuring out if there is more that just the hypermobility issues as part of an EDS diagnosis or is it just the immunotherapy every three weeks that I am on to fight cancer. I used to be on so many drugs too…6 at one time. I’ve stopped all drugs but continue the immunotherapy. I have a horrible time trying to sleep and staying asleep due to pain and now they want me to take an new drug. I’m on some CBD oil but it doesn’t work that well. What do you do for sleep issues.
Also my family treat me horribly especially my husband.(abusive).. .because I speak about my health issues and ask for support They all say I have a victim mentality. I don’t but talking about pain helps me. My friends can see that but my family doesn’t. What do you suggest?