My New Diagnosis of COPD - A Real Challenge to My Health

Are ya trying to kill me Petie?  My goodness, this was the last thing I expected my Valentine's Day to include -- THANK YOU.    However, it was more like    . It was a surprise, as I knew you'd gotten sidetracked writing about Pickleball Bob, so hadn't expected you to have another piece at Lumigrate for days or a week!  When I got to the bottom, tears streaming down my face at the strength it takes for you to share as you have here, my heart just feeling both grateful to know you and to have been able to help you in your time of need, as you've done so much for me these past 10+ years, sad to think that this is ahead of you and your 'framily', myself included, my brain thinking 'where is that awesome COPD manual I have and who can I get in the mix here to educate us about COPD', I realized...

THIS is the Petie I remember from 2001 -- the one who became my mentor because she was a born educator and logical in her process.  Nonthreatening in her friendly manner with an awesome sense of humor but HIGH expectations for quality.  Sadly, that was several years into my career as an OT, and that is why with national mentor week last month I wrote at Lumigrate to encourage ALL people to look around them and see if there's someone who could benefit from what they have to share.  (I didn't bug you about reading that part because I knew you had a LOT on your plate dealing with this, along with normal 'life stuff', and figured we'd have time in the future to catch up on that one.)   

It shows in this piece, how you were educated and worked 'in the good old days' of occupational therapy in the United States, working at Rancho back in it's heydey, where you were truly utilized by the physicians' teams as medical providers with HIGH expectations for your understanding of the medical diagnosis.  

From what I know of COPD per the allopathic medical model (also thought of as 'conventional', 'Western, etc.), you've done an exceptionally good review/overview/summary here, so thank you! I'd many times worked with the oxygen providers with patients, and doing OT related to medication management (most people don't do their inhalers correctly, as you likely know). OTs cannot do anything related to bringing medications to patients or handling them when setting them up in pill boxes, but we're KEY providers of education and can supervise patients doing these things and find strategies to help them increase their safety and independence.  

My day started today at 7 am attending a training about medication compliance, by the way. STAGGERING how many people are not taking their medications as they are ordered/prescribed. And the reasons for it -- I personally don't think the providers REALLY understand why not because they've studying big studies done by researchers and not studying things from inside the home, the way us OTs get to see, if we're lucky.   

I had a friend six years ago whose parents lived west of me in Utah who I felt could have better advise about the oxygen intervention end of her COPD.

Being the 'connector' or Yenta that I am, got them talking with someone here who is just THE BEST I have seen in all my years working with people using oxygen therapies.  He provided advise, told them suggestions for equipment to get from their vendor in their area, and they were MOST appreciative! That was all she needed and she and her husband fulfilled their retirement goal of becoming campground hosts, and they were stationed in some high altitude places, last I heard!  Really lovely people and much like you and Bob in a lot of ways.  I just remember seeing the life in her eyes when I met her socially -- just lively and clearly a 'troublemaker', in a good way, like her son, my friend. "Full of life", "firecracker", etc.  The husband/dad was this really mellow, highly intelligent and amazingly strong, vital, good man. I'd actually forgotten all about doing that! I'll have to check on them and see how things have gone since I last knew.  

I'm pleased to see you ALSO read the one piece I've sent you (so far) which is from the CAM side of things. (Complementary and Alternative Medicine). Thank you for considering it along with the other resources you have specified.

Eight years ago, after I moved here, my primary care provider who I was grateful had agreed to take me (all the practices were full, and people with fibromyalgia often are turned away even when they are NOT full) really started focusing on the breathing aspect of my illness; I was 44. I'd been on albuterol for over a decade and Advair back when we worked together in 2001 and thereafter.   

I'd always joked that I got asthma for my 30th birthday ... .  I'd truly gotten a cold on my 30th birthday and, in retrospect, that was just after I'd had chronic fatigue syndrome and was heading into fibromyalgia but didn't know it.  These are 'labels' and 'diagnoses' which help define the problem so we can solve it, but another way of looking at things that's more difficult is a continuum ----

Chronic Wellness (as we ultimately are born with) ...................... Chronic Illness (that ends our life)

We're ALL on this continuum somewhere, and every day we are even on a different place on it.  We have SUCH powers to change where we are on the continuum! Much of it, however, is not promoted in the allopathic model, in my opinion! So to be honest, when I got done reading your wonderful piece, I was also that the insurance industry doesn't yet respect the many things which I know have helped me get back to having WELL lungs! Not that they're the , they're just so ingrained in what they believe and how they do things, it takes FOREVER to get them to make changes.  It takes funding of studies that are done in the manner that allopathy respects, and today with the many things draining the monies for things and the difficulty getting funding compared to the 'good old days', I fear how progress is going to go on that front.   

This has helped me a GRATE deal to really work on applying myself to thinking 'outside the box' of labels and more in lines or even spectra, so I hope it helps you that I share it here. With your background as a draftsman and artist, I think it will work well for you.  I hope the others reading as well.  

Like you, my mother and grandmother, who I'd been cooped up with in a very small house with poor air circulation, had shared about two packs a day of cigarette smoke with me second-hand for the first four years of my life, and then it was just my mom and her one pack a day. But I was required to help cook dinner and she did it in a very slow, methodical way so she could enjoy her martinis before we had dinner.  Then she'd sit and smoke at the table while she and my dad argued about politics. (She was a right-winger, my dad left -- and I was not allowed to leave the table and start clearing plates and doing dishes until they were done with their 'discussion'.  

I learned a lot, not only about the things they discussed but about how a young person can end up having the signs of adrenal fatigue and chronic illness developing as young as my symptoms track back. I'm NOT indicting anyone, they're all dead anyway, but I have 'reviewed' all this in order to define the problems I had in my body/life and then went about changing and solving them MANY years ago. I took my first steps at age 19, I concentrated very hard on it at 29/30 after I'd had chronic fatigue syndrome bring me down and scare me, as you have experienced.  I wasn't so afraid of my 'mortality' at that time, but what if I wasn't going to become homebound at age 29 for the rest of my life, as some people do? 

It was exactly 8 years ago I was getting Myers Cocktails as part of my treatment with the outside the box thinking MD here, the only resource locally for such things at the time.  My previously 'no problems' veins were no longer 'happy' -- it was taking up to six insertions of the needle to get an small IV bag of nutrients through them and into my body, where the increased saturation has remarkable effects on the tissues of people who have chronic illness such as CFS/FM.  (They were only $55 but insurance does not pay for them; I needed two a week and I needed about eight weeks, or sixteen, before things 'turned around'.)  

Between that and my allopathic MD focusing on my lung issues and I had an increasing 'mess' of medications, I was concerned! Between the inhalers (plural) and prescription medications, I think I was on five things for my lungs.  The copays alone were $100/month at $20 each on the very good insurance I had at that time due to working in skilled nursing as an OTR.  

I made a BIG DEAL about turning 45 because I honestly thought if things kept going the way they had, I'd not be here for 50.  

By the way, when the Myers helped and I lost a lot of weight becasue it just got my cells nourished the way they need to be, and everything was back to 'weller', I was sure to let the nay-saying allopath see me and know that I'd gotten better doing what I had felt was right, despite his 'cautioning' me.  That way he would know and maybe open his blinders up a bit more to the type of medical treatment people REALLY need and stop bashing all the things that are 'unproven' by expensive scientific studies. He as doing a 'baby with the bathwater', and in reality, much of what that 'renegade' MD was doing was 'out there' and overall, I got better but it was not without 'incident' and problems.  Not so much because of the type of treatments but their protocols and procedures for safety were not up to standards of the industry. I was greatful there was at least a clinic in this rural area taking on such things but I learned my lessons along the way.  You, Petie, are in the bigger city of Colorado Springs and I know that you know of the alternative MD there and he is highly regarded.  

Toxins in the body that accumulate

When the integrative medicine and environmental medicine specialist who provides content at Lumigrate, Wm. Marcus (Marc) Spurlock, MD saw my heavy metals test results from 2005 or so, he said 'immunizations on the mercury and who was the smoker, you or someone else? -- lead and cadmium are in the papers.  That's important to know if people smoke marijuana too, by the way."  

In further thinking about how you might navigate this and your history, Petie, YOU LIVED IN SOUTHERN CALIFORNIA during the years .... Um... how do I say this ... well, there was LEAD in the gasoline from the time you were born until you were quite into middle age, no?  I mean, at least you're not so old that you were breathing coal fumes, like my mother struggled with growing up in Chicago. 

Again, I'd take an approach if it were me, of listening to your inner guide about what is right for YOU, but I'd start with interventions that don't have side long-term consequences as side effects and quickly put as many time/energy/money resources as I decide to put into COPD toward finding the underlying 'functional' reasons for your body being 10% into impairment/unwellness of the lungs and solve those problems and in theory, at least, things should head back to 'in the middle' and then keep heading back towards wellness. 

You have shared elsewhere that you only found out about age 70 that you have a gluten allergy/intollerance, so my first thought was food allergies.  For one thing, the testing is so easy and eliminating foods is very easy to do for INSTANT (almost) results.  

Detoxification and cleansing also has fast results when properly done, but people have to be at a certain level of health to take that on.  So finding the food allergies (if there are more, which I'd imagine there are, most people have several) seems to make sense to look at first.  Lumigrate has full length educational seminars you can download to your computer and watch, for $0, an hour of your time and energy, plus the STRESS some feel of 'downloading?  Can I do it?' -- I'm betting you and Bob can figure it out! Food Allergies.  Detox and Cleanse.  Both by Christopher Lepisto, ND.  

I highly recommend starting with the 20 minute Chronic Illness: Full Barrel Syndrome video.  

If it helps, this is the the sequence I have gone about my health recovery:

• Do the things that everyone does ideally -- pure/filtered water (drinking and showering/bathing, chlorine is a toxin to breathe and ingest; flouride too; good for the surface of teeth perhaps but internally, not good for animals/people), sensible exercise, as able, nutritious food (I did this in the 1990s, it wasn't solving the problems) 
• Eliminated unnecessary medications (I sensed birth control pills were part of the problem, so my significant other had a vasectomy. That didn't help my problems, they got WORSE until I found out about the hormone problems that are typically part of CFS/FMS, including thyroid) 
• Quality supplementation of nutrition (in addition to IV nutrition to 'kick start' things, I had an MD teach me about how important a quality brand was in 1998/9, then I could continue getting an identical formula at Vitamin Cottage, hence my ALSO working and welcoming Juice Plus, USANA via Robin Thomas and ITC Pharmacy at Lumigrate to provide their expertise and information)(there are links in the videos and products tab to Vitamin Cottage, you'll see -- THREE options)
• Identifying food allergies that were the IgG type (IgE testing comes up "nada" on everything, but insurance pays for that so several times I was referred to that over the years with the 'dunno what's wrong with you, you just have had some bad luck I think" LITERALLY the response by the last allopathic allergist I consulted with in my quest to find someone to re-do my IgG testing that helped me so much in 1995).  
• Spending a day (and more $ out of pocket insurance doesn't pay for) doing heavy metals 'challenge' testing
• Detoxification with medical supervision due to my complex/chronic health issues. I find that TYPICALLY eating in a way that's close to how one would eat on a cleanse was a good 'compromise' for me for now.
• 'Chelating'  heavy metals to reduce the burden on my body which took me from chronic wellness to illness as they accumulated in the body tissues.  "The issues are in the tissues".  I elected to go about this the more aggressive, IV route and it was not well supervised, in my opinion, and I did too many too fast and started feeling 'flu-like' so stopped to do a cleanse before going back to complete them more spread out.  I was planning to do that January of 2009 and, as life went, my life pretty much fell apart in late December and Lumigrate was launched in March and I've been doing my best since, spread too thin to 'go deeper' on this facet. We're all 'where we're at' and 'doing what we can'/ doing our best or 'getting by compromising' 
• deepening of my spiritual practice and beliefs 
• reduce the exposure to toxic people and situations/organizations/devices  -- increase time with wellness ones   who not .  

I hope that the improvements that many people observed in me for about five years starting eight ago are 'living proof' of what can happen.  I'm honestly very frustrated by the backslide I had, and considering all that has happened the last three years, I have to say 'it could have been worse'.  I'm sure others in my position might have had it not affect them so negatively, and I have learned from it and continue to grow in terms of how to reduce stress and deal with things differently in the future.  Others might have totally fallen apart.  I look at it as yet another opportunity.  

This is more of a sidenote perhaps but others might be reading this who have CFS/FMS and not COPD necessarily, but I had chronic lung problems develop as soon as I had gotten over CFS.  I didn't really associate it at all with the CFS at the time, but now I know more and can look back and see it clearly.  

I started feeling some 'lung stuff' this winter coming back, coughing a bit with cold or exercise, which I now know is a symptom that had to do with this whole chronic illness 'overall deal', so looked at 'what am I eating and supplementing'.  Allan Jolly, RPh, ND at ITC Pharmacy in Castle Rock, just up the road about an hour from you from Colorado Springs, ALWAYS reminds me of the gut.  (Look for his contributions in the 'gut' forum, and there are links to their website from his contributions. The link currently is: www.lumigrate.com/forums/health-issuesdis-eases/gastrointestinal-gi-issues-and-solutions-gut-things

They have patients in every state in the US and beyond, with a specialty they got into over the years of treating many, many patients who were having competent providers direct their health care related to fibromyalgia and chronic fatigue syndrome, etc.)

I know there's a connection to my lungs from my sinuses so was asking about a sinus product they carry.  "Yeah, well, if you need that fine, but if you need that you ALSO have to be looking at the gut." Naturally, he consults over the phone and they ship products all over the US and beyond so you can do that as well, but you might want to go in person since you can.  

I DEFINITELY do not want to go back down the route of the pharmaceutical steroid and albuterol inhaler, multiple oral pills for asthma stuff -- I now know to say 'but what's causing it' and work to correct that.  

Consider this my  Day card to YOU, Petie.  I hope it helps. I know it's a lot.  You weren't ready for this before.  Now I think you are.  Perhaps Print (icon lower right here) and mark it up.. and let's go from there.

Live and Learn.  Learn and Live Better! 

~~ Mardy 

I saw this link about Hamalayan salt and thought I'd post it here since the lamps work on the ions in the air and they go into many OTHER strategies related to using (high quality/specific) salt.  Naturally, each person has their own 'action' to take, and Lumigrate is an 'idea' place, with the links out to different providers and products a way of people learning more about things that might resonate or be 'of interest' to them.  

 naturessaltlamps.wordpress.com/category/benefits-of-himalayan-salt-lamps-2/  

I thought I'd share this link about indoor air pollution related to INCENSE.  I know this might seem a bit 'far out' but I've been surprised at the numbers of people I know who still burn incense, not knowing of the toxins that can be in it.  (Suggestion: Essential oils and diffusers or little pots that heat water and oil, but make sure the essential oils are 'true'; there's a lot of stuff being marketed which is saying it's the real deal/good stuff people 'in the know' are demanding, but it's NOT quality.  

www.clinicalmolecularallergy.com/content/6/1/3

I also like this article because it shows that the East is in the same process the West has been/is.  Sadly, humans around the world are very harmed by many things they breathe in; many developing countries still burn kerosene at night and people are being harmed by those toxins and it's only $20/solar powered lamp to get them out of that harm.  We're all in this together, so let's think about what we are doing in our homes and businesses and clean up our environments and then also help others learn and do better as well.  

Live and Learn.  Learn and Live Better! as I say! ~~ Mardy

 National Institutes of Health posted a good piece about CAM (complementary/alternative) treatments and asthma, which naturally might apply.  So here it is: nccam.nih.gov/health/asthma/facts.  I hope Petie sees this! Perhaps she can give us an update on how she's progressing with this process since it's now been about six weeks since she initially shared this news with us.  Over 500 people have read it to!  Hope it helps! 

Live and Learn. Learn and Live Better! ~~ Mardy

It seems to me that a sleep study might be in order, Petie.  I know that people think of that and thing about having to spend a night in a lab being looked at like a rat in a box trying to sleep in a strange place, but things are different now.  

Per my contact in 'the biz' of home health oxygen and related respiratory gear, there are now 'wrist ox' gadgets (the ones that are small that we used to monitor patients are called 'pulse ox' (for monitory oxygenation of the blood on a fingertip) and data is collected in a gadget at the wrist.

It seems to me if a person who was not sleeping well went to their provider and reported that they're 1) not sleeping well and 2) elaborate on why / symptoms and then 3) said they'd like to have their oxygen saturations monitored as they slept (which is typically overnight), that might be a logical next step.  I'm sure your provider told you all this but I also imagine your head was 'spinning' finding out you had a COPD diagnosis.    

I understand there's a growing market of products in this industry for people who either do not have insurance or for whatever reasons don't want to go that route, and oxygen concentrators of high quality are available for about $650, which is about the same price as companies have sold to medical equipment companies. I'm not sure if that's through online or brich and mortar stores or MLM, but it's an interesting new development!  

Every time I investigate another facet of health care in the US, I seem to see another example of how the $ issues are shifting what and how services are provided.  I hope we can keep up! And I hope this has been of value to you, Petie (presuming you see it), and any others who are reading.  

I guess I have a concern in my mind that because people have equated 'oxygen bars' with something really 'good to do' and 'trendy', people are also going to think that getting in-home oxygen by purchasing from vendors without getting medical and insurance involvement is a good thing too.  But it's something which I believe people really need to get some basic understand of before the start taking things into their own hands.  I'll hope off here without providing any suggested routes.  If anyone has something to add, contact me and perhaps it's another stepping stone of information on the path back to wellness for people.  ~~ Mardy

Update: I talked to Petie -- she's been sick but is on the mends, and she and her husband both have family members who have medical issues so they've been traveling and being supportive from home as well.  She did have the sleep study and it did find things that I'll leave up to her to write about or not.  So she's not dead --- just busy -- AND being a Take-Charge patient and doing what she is doing to figure this out and get to the bottom of it and solve the underlying issues, we can hope!  

---

End of 2012: Petie did have the sleep study and was found to have some needs there which she was in the process of getting treatment for.

Additionally, she was referred to a pulmonologist and by the time she was there for her appointment, she had no COPD and no asthma that day. What happened? 

Basically her Silver Sneakers instructor ALSO knew about food causing inflammation in the body, and encouraged her to cease dairy/cow/bovine products -- for a while -- and see if that helped get the inflammation 'put out'. And she did that and saw changes/results. It took a year to hear it from a few places -- the same thing about foods, and still be turning to conventional medicine for their advise, which does not include 'let's find the underlying cause, let's treat the symptoms'. I think this is an important concept about the 'systems' you are around: If she only had friends who, unlike me, didn't know this kind of information, she'd not have heard it from a friend. If she wasn't going to an excercise class, she wouldn't have had that contact -- so much of who we are has to do with who we ARE AROUND.

Petie took steps to counteract the effects of the steroids she took in order to breathe, which included the doctor prescribing something for candida yeast overgrowth, and he was the one who realized that but the other provider had not so she lost a couple months not having the advisor in the practice who was 'savvy about the symptoms of candida'. 

The doctor didn't tell her about boosting the gut flora with probiotic, but Petie knew that on her own so went to the health food store and asked the clerk for help picking a good one -- she wanted THE BEST info and the best product for her needs. This is a store she's come to trust that has a clerk she really likes and trusts.  So you see, "Rome wasn't built in a day." I shop at the same chain and have since 1996, and I have never in my life seen more 'newbies' shopping there as I have in the last year! It's awesome! So that means that there is more likelihood that EVERYONE will have someone like me, or exercise instructor, around them, talking about these important changes in diet that affect wellness. It will be a snowball effect, and exponential perhaps! It feels that way to me, at least.

And so the clerk figured she would also point her to a product they sell there for alkalinizing the body and setting up the gut for 'prebiotic' (things the flora already there and in the probiotic benefit from having -- they need to be 'fed' things that help them grow while you are simultaneously stopping/lowering things that the yeast feed on (sugars, for instance). It's five years or more now of videos and websites and reinforcing information about foods. Progress is happening!

Petie continued being compliant about not eating gluten. And she stayed active and took time for enjoyment in life. Petie has one of the more stressful lives of someone her age I know, which comes in waves but this COPD stuff motivated her to add the HUGE task of doing the pre-planning for her end of life, as she has to turn over at some point suddently or gradually, the supervision of her adult son with developmental disability's needs. 

Every time we talk she has ideas of what she wants to write about when she has time, she truly has been just almost drowning in things going on which are needing to be done with her life. I told her we'll be here when she needs advise or has time to share more of hers with us.  

I use this link a lot to tell people about how in a year you can go from having a new diagnosis to solving the problem if you use FUNCTIONAL medicine and make it a priority to learn and DO.  And I can hear over the phone if she's being completely compliant or not with dairy; after the holidays she was again sounding like someone with COPD. "I only have a small piece of cheese every night, rolled in cinnamon as that's good for your blood sugar". But that's dairy EVERY night going into your body. 

Typically it's someone who doesn't think about adding half and half or milk from cow to their coffee or tea. But that's Petie, always throwing a curve ball in there -- and running down the road as agile as when I met her fifteen years ago when she was only mid 60s! (She's written here that she grew up a pal of 'Bobby' Redford. He called her Petie, and so that is what we call her here.)

I hope her story has helped you if you're reading this topic thread. I also want to add that this is a great 'living case example' of how the Lumigrate YOU! model that our YOUsers all hopefully know about from our home page, comes into play every day for those who employ these strategies. Here's the model:              

It's a progression ... we're all progressing with what we know if we're growing.  Now there is more information I want to steer people to about what's going on with the gut that leads to lung and basically all issues.  Yes, hard to imagine there was one factor involved potentially.  Here's the link to the preliminary topic at Lumigrate about "Steve's Images", there might be more in the future but this is a start.  I thought it medical history in the making that I was witnessing possibly and wanted YOUsers to have the information ASAP.  

Cyanobacteria -- algae -- is what the topic is essentially about.  It our air. Our soils. And our waters.  So there is MUCH we can do to correct it and reverse our symptoms, and it makes perfect sense why anything one did to help the gut would overall help the overall wellness, such as the lungs.  And why it might not have SOLVED the problem for Petie, just made it lessened and asymptomatic.  I'll have to see what she thinks and give her a call.  She was with one thing after another in life and keeping up very well with it.  But I don't think the problem was totally solved. Maybe this will help! Wouldn't that be 'grate'? 

www.lumigrate.com/forums/internet-connections-and-activism-medical-and-beyond/social-media-websites-political-informat

Live and learn. Learn and Live Better! ~ Mardy