The Importance Of Having Your Medical Records

Tomorrow is the trip back to the National Jewish Hospital. Of all times for a snow storm to hit as we do not have Daisy’s Assistance Cards yet and so son will have to sit in the van for five hours in the freezing cold with Daisy. Not to worry, we are always weather prepared in our van. It will not be easy..but it is do-able.

Now, it is extremely important to get copies of your medical records every time…repeat ..EVERY time you have something done, especially your surgeries, lab work, pathology reports and tests. Since December, we have tried to track down the records on my lung surgery from 1996 as my doctor at the Jewish Hospital needs them to make this next diagnosis.  And this job has been like trying to track down a spy or something very elusive.

Remember this as you read. I gave my doctors last year ALL my records that I had on file and they were supposed to copy and give back. Well, the resident that was supposed to be my doctor decided to leave the field and when I got my records back, not all were in the file. BUT, on my last visit to the doctor, as my doctor was looking through my records on the computer trying to find a test, I SEE the pathology report and ask if I can have a copy. She very vaguely told me they could not do that as it was not theirs. I said I know that…it is mine and I gave it to you and I want it back.

The nurse from the Jewish Hospital calls and asks are we sure on the name. I tell her yes I am but then I start searching and I find no Medical College of Georgia listed anywhere. I was beginning to think maybe I dreamed the lung surgery up and even went to look in the mirror to see if I actually had surgery scars and I was relieved to see that I did. I have a four plus inch scar and below it a drain hole scar. So, whew, at least I know I really did have lung surgery.

So, I start calling hospitals in the town asking if they know where the Medical College went. Every one seemed to have never  heard of this Hospital and it was a teaching hospital. If I can not find the hospital, then we have no records or pathology report showing what the biopsies on the lungs showed. I did remember the words “granuloma” and “fungus” but nothing to back it.

And so I keep researching and find that the Medical hospital has changed its name. I send info to the doctor I am going to tomorrow and I call the hospital in Georgia and ask about records. Ok, here is double thud….they tell me all their records were lost after a change over in computer systems. They say there are a few left on paper in an archive somewhere but do not know how to get access to them.

Meanwhile, I call back to my doctor’s office here and ask for the copy since it is mine…I gave it to them. And they refuse as they did not write it. So, I call back to the Georgia hospital and ask for the director of pathology and boy was that the best thing I could have done. This woman went above and beyond the call of duty. She called my doctors and they told her there was no pathology report in my file. The pathology doctor called me back and told me that and I said “that is a lie. I know because I saw it with my own eyes on the last visit”.

So, she got every piece of info on me and I told her the doctor at the Jewish hospital thought I had a genetic disorder tied to my kidneys and my lungs and that is why they needed the report.  I told her that this piece of paper that my doctors here have is the only record I know of since they lost their records in GA.  I give her the name of the doctor who is the director at the clinic I go to and she calls my doctors back.

Hours go by and first the doctor from GA calls me and says “I found your report. I went into the archives and have been looking for it all this time. Tell me the fax number of your doctor at the Jewish Hospital and his name and I will fax this report to him. If he wants the slides tell him to contact me. I am going to go look for them right now.

Meanwhile my doctor’s office in Pueblo calls me and the little woman at the front that I like so much says she has searched and found my pathology report and as soon as she gets permission from the director, she will fax it to the Doctor in Denver. I never tell her that the Pathology Director in GA has already found it and faxed it to Denver.  I just wanted to see how long it took them to call me back and they have not to date.

So, the moral of this story is get your records now while you still can…all the way back as far as you can. The reason…you never know when old records will be needed especially with 25 million people with auto immune disorders in the US alone and there is a genotag in those of us that end up with auto immune disorders and something environmental..viruses, vaccines, exposure to chemicals, etc…sets them off.  The tests and surgeries, lab reports and pathology reports are the most important. My doctor at the National Jewish Hospital said..do not tell me what the other doctors have said. Just tell me what you have felt and show me tests that have been done.

And the second moral of the story…if you have your own records, always go to office max or somewhere and make the five cent copies. Never EVER give a doctor’s office your records to copy for you do not know what will be missing when you get them back.  Many doctor’s offices are now charging exuberant prices to get YOUR records. They are acting like they are “their” records and not giving you everything. Remember, these are your records and the fee is to stop you from getting them. They will send them to another doctor and not charge the doctor but charge you for yours. One doctor wanted 40.00 for my records which were twenty pages…twenty pages.  So, be your own best advocate..get your records from doctors, hospitals, labs, etc and keep them on file. And make a permanent copy that you put up for safe keeping.

Short Update

Today we are about to leave for Pueblo because I have to have my eyes measured for cataract surgery as both eyes have cataracts so bad that I see  white haze as I look around the room. If my son is twenty feet from me, I can not see his facial features. That is hard for me to not be able to see my loved ones facial features unless they are right up close to me.

I have told no one, including not telling my son, how bad my eyes have become. Reading a book is impossible. Working on the computer a strain. Lights are like the weapons of eye pain and it has affected my life drastically. Yes, I have kept the optimism that is so much a part of me but it has been hard work to do that.

So, today they measure my eyes. Next week, I go to the National Jewish Hospital for more tests and to talk to my doctor there on Monday and then on Thursday I have cataract surgery on my right eye. The left eye will be done on May 2 and while I am not excited about surgery…I AM excited about being able to hold a book and read again, which is one of my passions…reading. What a joy that is going to be and I already have my first book picked out from our library here at home.

I am also excited about going back up to the National Jewish Hospital even though it is a very hard trip for me because they are trying to find a protocol to help give me better quality of life. I know they can not cure me as there are no cures for auto immune disorders but I do believe they can make my life easier. So, life is good.

Remember, we may not always can control what happens to us, but we can how we deal with it.

We Live Strong But Friends and Loved Ones Make the Journey Easier

This song has carried me through the past two years. Although it was written because someone died from cancer the singer was close to…it is about all people struggling and especially those with chronic illness and incurable illnesses.

“they say the road to heaven might lead us back through hell”

believe me when I say it does.

“Maybe tonite, maybe tomorrow..we’ll win this fight and bury this sorrow”

our mantra

“So, We live strong.”

Oh, yes we do. And we live stronger when you are with us.

video by rmacon

The things the chronically ill face daily are not easy. It is a battle constantly to survive and make it through to the next step. We under go procedures praying they will help us….just like I underwent the Radio Frequency Ablation on my spine…8 areas each time….and have done it on lower and mid-spine. It was not easy but I did it. Or the embolization of the kidney tumor, or the heart catheterization. I could go on and on with my list just like many others.

Thanks to the internet, those that are chronically ill and/or have terminal illnesses are able to join with others and not feel so alone for it is hard for those not sick to understand even though they feel compassion and love. It is by encouraging each other we can continue our fight. And by the wonderful warriors who stay by our side and keep pushing us forward.

My dear friend Sherry has walked behind me to push when I could not go, beside me to encourage me when I was moving forward on my own and in front of me to blaze the trail to make it easier if she could. She has held my hand, dried my tears, yelled at me to “fight damn it..fight”, played me music to soothe my soul, and told me “I am here friend”. She searched out medical information to help me, sent me things to make my journey easier like fleece covers that did not hurt and red spike high heels because my heart dreamed for them and skyped me just to see my face so she would know if I was really ok. And sometimes she just simply sat in silence with me as I laid there too weak to talk. What a gift she has been.

Believe me when I say…if you know someone chronically ill, disabled, facing cancer, incurable auto immune disorders, chronic illness or other catastrophic illnesses or anything catastrophic in life…the best gift you can give them is yourself..your love, just being there to hold their hand..dry their tears…help fight the battles that sometimes are just too much to fight at the moment. When you do that for someone like me and others…you become a hero in our book.

The most important thing for those ill is to keep fighting, keep working on life and living. We can not control death but we can control how we spend our lives and the joy we have in our lives until that day.   This song above has very special meaning for me and carried me through  really rough times. I hope you all enjoy it. Listen to the words for that is our world…the sick with cancer, the sick with auto immune disorders and other disabling and chronic conditions. We live with “maybe today…maybe tomorrow”  they might find a cure. For there is no cure for auto immune disorders. And with cancer, the cures are slow coming. Our injured vets are in the same boat…waiting for maybe today…maybe tomorrow they will be able to help me. They were injured fighting for us.  It is time we fought for them by just being there for them and letting them know they are not alone as they heal from catastrophic injuries during their tours.

You can not walk the trail for us but you dang sure can make it easier by walking with us.  Please do not let fear keep you from being with those that you love and care about…or even from those you see in need. Many years back, I took a friend for chemo and radiation for weeks on end so she did not have to go alone. There was a woman in there who had no one to be with here and I watched her call family member after family member because she was alone and terrified. I went and got on my knee in front of her and said “It will be ok” and started talking to her. While we were talking, someone finally returned her call and barked into the phone “what is wrong”. She smiled at me and told them “nothing. I am fine now” and hung up….so I sat between both my friend and this woman and we all talked as both got their treatments.. All it takes is a little time and a little love to give something back to the universe so wonderful that your heart will fill to the brim.

Proud Fighters Staying Strong

The Stronger Project

(my mojo is on this video, just watch for me)

video by Kelly Patricia

Life is a choice. When things are tough, just choose to make it through the next minute, hour, day…and when it is better..choose to enjoy what you have.  Winning the battle takes us all holding each other up.

Loving Life

“I am fighting to stay alive not because I fear death but because I love life”

cancer survivor Edie Sundby

People ask me all the time why I refuse to give up….why I fight so hard and I read this quote yesterday and thought…that says it all. I fight so hard to keep going because I love life and I do not fear dying.  Is every minute of every day a good time?  No, it is not.  In fact some moments are extremely hard and painful like today is. And even though I am smiling, the pain is evident in my eyes and the struggle is showing with dark places under my eyes.

But, I have such great moments when I have good ones that they overshadow the really bad times.  Times like watching with great pride while my son makes homemade bread all on his own or talking to a dear friend on messenger or calling Mama and talking to her.

When I look back through my life…would I change anything?  Oh my yes, I would and I think most people would. I would love more, laugh more often, forgive easier, and know who truly cared about me. I would have tried to be an even better parent to my boys but I do know because they tell me…they know they were loved.

There are also wonderful memories over my lifetime that sustain me and bring me smiles and help ease the pain I live in and that is why I fight so hard and refuse to give up.  I am 63 and unlike many women…I do not mind telling my age because I am proud I made it to 63. And I believe God has kept me here for a reason. I also believe that my attitude  (my mojo) that comes from my faith is what has kept me here smiling.

The MOJO Song

And here is me with my mojo on in spite of how bad I feel today. It is a choice and we have choices every day and it is up to us what kind of choice we make. I prefer making choices that help me feel better such as listening to music. Yes, the dark circles under my eyes still show and some of the pain but as I continue singing with the music..my spirits lift and I am distracted from my pain.

 

I fight so hard and refuse to give up because I love life that much, I love my family that much, I love my family of choice so much…..and I know where I will be when I die and so I am not afraid of dying.

Have You Had Your Dose Of Laughter Today?

I am a big believer in laughter and how it lifts the soul and makes the whole day seem so much better. I use laughter for part of my pain management because it helps me with my pain.  Helpguide.org says the following about laughter:

“Laughter is good for your health

1.  Laughter relaxes the whole body. A good, hearty laugh relieves physical tension and stress, leaving your muscles relaxed for up to 45 minutes after.
2.  Laughter boosts the immune system. Laughter decreases stress hormones and increases immune cells and infection-fighting antibodies, thus improving your resistance to disease.
3. Laughter triggers the release of endorphins, the body’s natural feel-good chemicals. Endorphins promote an overall sense of well-being and can even temporarily relieve pain.
4.  Laughter protects the heart. Laughter improves the function of blood vessels and increases blood flow, which can help protect you against a heart attack and other cardiovascular problems.”

Have you ever laughed until you literally cried and thought “oh,  that felt good”.  The reason is because it relaxes you, it releases some of the stress and that makes you feel better.  When I can not sleep, I reach out on my table here and turn on a video that makes me laugh and it helps me get past the pain crisis enough that I can go to sleep.

My son came in one morning and said “what in the world were you doing in here last nite?  I could hear you laughing all the way to my room on the other side of the house.”   And when I told him what I was watching and that I was laughing so hard that at times no sound came out of my mouth, he totally got it. And I was able to finally drift back to sleep after watching the show and laughing until I cried.

Laughter also helps during times of extreme sadness and loss. I want to tell a story about my adopted daughter and when her father was in the hospital dying. We were there every day at the hospital. And as horrible as it was watching him slowly slip away, there were times we laughed because of funny things. One day we were sitting in the little snack nook and I had my back to the mirrored wall and my adopted daughter said “why do you keep looking down and looking so funny?”  I told her that this man kept winking at me and it was making me nervous. Well, when we got up to go, she and I both saw him full faced and he was not winking…his eye was permanently shut.  When we got out of hearing range and down the hallway, she and I both started laughing until we cried and boy did that release a lot of stress. We were not laughing at him but laughing at me thinking what I did.

Another incident from the same time concerned her, me and a couple of people on an elevator. We were leaving ICU and a woman, who was on the elevator when we got on, started pushing all the buttons and said “this elevator will work”.  The elevator stopped between floors and here I was desperately trying to pry the doors open and my adopted daughter was at the back holding the railing with huge eyes.  A man pushed the button for the ICU floor and it went back and opened the door. I was out of there like a speeding bullet but the funny part was that I looked back and my adopted daughter is doing these leaps instead of running off. When she got off, she said “did you hear that crazy woman? She was telling people not to get on that elevator…that it took you places you did not want to go and it would not let you off.”  I said “honey, that crazy lady was me” and we both started laughing and just hugging each other.

Laughter is healing in many ways and if we pass on that laughter or those smiles, we unknowlingly help someone else find the comfort of laughter and smiling.

image from http://www.commentsyard.com/quotes-graphic-smile-and-laughter/

Let Your Light Shine

There is a light shining out of all of us….some of us stronger than others. That light is our happiness, our joy, our passion, our love, our compassion, etc.  But, have you ever noticed how some people can drain all of that out of you in just a very short time?  People who insist on being negative about everything, who are angry, resentful and moan and groan all the time about how bad life is are usually the ones that hit me the most. But, I have learned not to let people do that to me.  It is my life and I have to be in charge of it.

image from https://www.facebook.com/CODEBLACKENTERTAINMENT

I am sure by now some of you are thinking…well, how do I stop them from doing that.  Without realizing it, we train people on what we will and will not accept in our lives.  If we stand there listening to their moaning and groaning about everything in life, then they assume we like to hear it. And one of the first signs that we need to put some distance between us and them is when we are mentally thinking “my gosh I wish they would shut up”  or we go home thinking “I am so glad to be home and do not have to listen to so and so again”.

When I run into people who I  feel the depressing, angry, negative aura coming from them, I move away from them. If I can not do it physically, I do it mentally by focusing my attention elsewhere. I learned that nothing you say to these people is going to make them see the brighter side of life. They like too much being the way they are.

When I am struggling with my health, pain, finances….whatever…I need all my energies to do that and if someone is an emotional vampire as I call it, they will drain me dry and leave nothing left for me to work with. Some people are deliberately that way and some do it and have no idea what a downer they are.  It really does not matter the reason because the truth of the matter is….if it is pulling you down ..or me…then we need to vacate the premises  and put ourselves in a more positive place.

I am chronically ill and disabled and occasionally I will tell about what I go through but I try hard to not have it as a mantra. No one, and that includes those of us that are sick and try to still keep up a positive outlook on life, likes to be around someone who never sees anything good in life.  I believe what we let into our brains affects how we look at life. This is why I do not watch reality television because I think all the stupid games, jealousy, fighting, name calling, anger and hate are things that only pull me down emotionally and mentally and I do not want that.

Sometimes people are afraid to let their light shine, to act as happy as they are or be as positive as they are because they are afraid those that they are around will make fun of them. I say let your light shine because you may be lifting someone else up from the murky waters of despair. Do not let anyone or anything dim your light and your passion for life. It is your choice and for me…I choose to vacate the premises so to speak and the announcer can say “And Deb has left the building”.

I have had people tell me that they could not back off from certain people because they felt responsible for making them happy. My mother was one of those that felt like we should all entertain her and make her happy. And we all tried and she was never happy even with that. The reason is….we are responsible for creating our own happiness inside. Happiness is an inside job…not what we get from the outside. And so, since you can not make another person happy then it is ok to put some space between you and them when they are so negative. You can bring them joy and laughter, but happiness is up to them.  If you do not take care of you first, you are of no use to anyone else. It is like that saying..when the plane is crashing..put your OWN oxygen on first….then you can help others.

So, let your light shine. Let nothing dim it.  Let it shine…let it shine…let it shine…all over everyone for you may energize another person’s light that has dimmed.

image from KatrinaMayer.com

URGENT: Mislabeling Medical Illness As Mental Disorders

THIS COULD BE YOU ONE DAY:

This is probably the scariest thing I have read in a long time. The new DSM 5  book is due out. For those that do not know what it is, this is a direct quote from Psychology Today’s own page on an article about this.  “DSM stands for The Diagnostic and Statistical Manual of Mental Disorders. It is often referred to as the The Bible of mental disorders because it’s what health care practitioners use to decide if their patients have a psychiatric disorder or not.”

They have devised a new category for this book called SSD…which stands for Somatic Symptom Disorder. This is the scary part.  According to this category, a person can be labeled mentally ill if this happens.  In my book, this is a way to label us as hypochondriac by using a new word. This is another direct quote below.

“Here is the new DSM’s definition of Somatic Symptom Disorder. (Warning: you may have trouble believing what you’re about to read.)

People can be diagnosed with SSD if, for at least six months, they’ve had one or more symptoms that are distressing and/or disruptive to their daily life, and if they have ONE of the following three reactions:

Criteria #1: disproportionate thoughts about the seriousness of their symptom(s);

Criteria #2: a high level of anxiety about their symptoms or health; or

Criteria #3: devoting excessive time and energy to their symptoms or health concerns.”

Yes, you just read correctly. If you have for at least six months had ONE OR MORE symptoms that are disrupting to their daily life AND have only ONE of the three criteria above.  A person who has stomach issues could be classified with a mental illness and so could a person with cancer. Oh, this has bothered you for six months and you are anxious about it? Well, no need to do chemo. You just have a mental disorder. And yes, I am being sarcastic.

The American Psychiatry Association say it is too late to change this as the book is due to be published in MAY.  WHAT??????  Now, this left me with two choices…either the “group” from the APA is either very inept in what they do OR what people are saying is true and those things range from…this is political…follow the money….who will benefit…insurance companies will be able to drop coverage…pharmaceutical companies will benefit…research will stop on these auto immune and other chronic illnesses, etc. So, which one is it?  Well, public reaction and doctors have weighed in on this to the group and all they did was make the criteria to diagnose SSD even easier…so you tell me. I believe it is political and some big people/businesses will gain a lot and patients will lose a lot.

Now, with 25 million people suffering in the USA alone with autoimmune disorders and there are 80 plus autoimmune disorders, and then add to that all the other chronically ill people…there is the potential for people to die from lack of care, to lose their disability and insurance, to be labeled mentally ill when they are really physically ill. Just for example, it can take several years for a person with MS or other autoimmune disorders to be diagnosed. And if most of the chronically ill become labeled mentally ill instead of being tested and finding out what is really wrong, research will stop on what the doctors know is happening to us, etc.

Please take the time to read these links from Psychology today and read about what is happening and comment. Please take the time to pass these links to everyone so that people are aware. This could cost people their lives and dehumanize our physical illnesses.  I am not worried for me. I am worried for those newly sick or recently diagnosed with lupus, MECFS, MS and other autoimmune disorders who could be labeled mentally ill.  I am worried for my loved ones and my sons. One of my sons suffered with lesions in his brain and they told him they were sure that it was MS. He is at risk as is my other son who has chronic health problems.

http://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-medical-illness-mental-disorder

The one thing they have learned about autoimmune disorders is that the people who get them have a genetag and that something environmentally set off that genetag or triggers it. It could be chemicals, like with me, it could be viruses like Epstein Barr or other viruses but something triggered it. But, diagnosing these illnesses is very hard.

Now, let me say this. Do I think there are people who exaggerate their symptoms to get on disability. Yes, I do but not all of us do that and we should not all be punished for those that do. Do I think people with mental illnesses have physical symptoms…yes, I do but they had mental illness BEFORE the physical symptoms set in.  But to set such a vague criteria leaves it wide open for doctors to dismiss us even more. And believe me when I say, since I have been sick since 32, that I have had my share of doctors and their eye rolling only to have it found out that yes, I am really physically sick and was put on disability back in 97. When I had lung surgery and they told me what was wrong, I went “YES!” and my doctor’s response was “oh, you are glad to be sick?”  and my reply was “No, I am glad to have a name for what I have known was wrong for years. “  Doctors do not listen to women and dismiss us anyway and this will give them leeway to do that even more.

PLEASE, PLEASE re-blog this post, share the links and let the world know for the news media is not even talking about it. If you are healthy…it could be you one day that has that stomach ache and are looking for what is wrong and are anxious about it and are labeled with a mental illness. Many doctors have already put input in saying how dangerous this new category is and that it needs to be changed but the people in the  “group” that formed this new category are not listening.

“After you read this piece, I hope you’ll click on the link to Dr. Frances’ article. He has the best chance (via the number of “page views” on his piece and any comments you leave) to get your feedback to the APA before the DSM-5 goes to press.

Suzy Chapman wrote this to tell us how we can help. I am posting this on my blog and will post again because I care about myself, my loved ones, I care about all of you. I am tweeting this, and I am posting it on every News media site I can find. What about you? Please do not be afraid to stand up for even if they go ahead and print this as is, the attention we bring to the dangers may help if someone gets diagnosed with SSD and really are sick. Read the comments at the bottom on both pages and some of the stories will break your heart.

How can readers help?

Submitted by Suzy Chapman on December 29, 2012 – 1:46pm.

Anonymous wrote:

“Thank you for this article, Psych Today. To reiterate previous requests, can anyone tell us how we can weigh in on the subject?”

Anonymous, the disorder description, rationale and criteria for “Somatic Symptom Disorder” have been in development since 2008, following assembly of the 13 DSM-5 Work Groups. The SSD group published a couple of brief progress reports in late 2008 and spring 2009, and a journal paper in June 2009 on the group’s deliberations.

There have been three stakeholder review and comment exercises, in 2010, 2011 and 2012, that have been open to submissions from clinicians, allied health professionals, advocacy orgs, patients and families.

The third and final draft review took place in May-June, this year, when professionals and lay public could again submit comment on what would be the last draft to be posted for review.

Any revisions made since closure of the review to criteria sets won’t be known until the manual is published in May 2013. (The manual texts that accompany and expand on the various disorder descriptions and criteria sets have been embargoed from the start and have not been posted for public scrutiny or comment.)

The text that will accompany the “Somatic Symptom Disorder” section, under which SSD is one of several disorders, is understood to run to six or seven pages. But there will also be an abridged version of DSM-5 for use in primary care settings.

For the second draft, the criteria were a little tighter – at least two from the B type criteria were required for a diagnosis of SSD.

But despite the number of submissions received during the second draft review exercise in response to these specific criteria, the SSD Work Group’s response has been to reduce the threshold to at least one from the B type criteria.

So it seems that thus far, the SSD Work Group remains disturbingly lacking in receptiveness to the considerable concerns of professionals, patients, advocates and patient orgs.

The texts for DSM-5 are still being finalized, but this is very much a time sensitive issue.

Dr Frances has asked me to thank all of you for leaving comments – the response to our concerns has been tremendous.

At this late stage in the process the best kind of help is exposure on as many platforms as possible – to as many patient groups as we can reach and drive traffic to this post.

These criteria will potentially hurt the so-called “functional somatic syndromes” more than other patient groups – over 25% in the field trials.

But all illness groups will be hurt by the SSD category unless the criteria are substantially revised or unless SSD is left out of the mental disorders until there is a body of rigorous evidence to support the validity, reliability and safety of this untried, untested, SSD construct.

So we need your help to reach out to all illness groups – and quickly, because the clock is ticking.

If you have a blog or a website please blog on this issue and link back to this post.

Inform your carers, family and friends and suggest they read our commentary and leave a comment, too.

The more hits on this blog post and the number of comments that are left will demonstrate to the APA just how much concern there is around this new category.

Circulate the link amongst friends, student and work colleagues; ask them to forward it on to their own contacts; post the link and a quote or two on all the internet platforms, forums and mailing lists you post on; on Facebook and Twitter.

If you’re commenting on media articles or on blogs please draw attention to our concerns and include a link, if links are permitted.

If you have contacts who are medical or allied health professionals, social workers, medical lawyers, policy makers or politicians, alert them, too, and ask them to forward to their colleagues. Not enough clinicians outside of psychiatry have been scrutinizing these proposals.

If you are a member of an advocacy organization alert their news and e-bulletin compilers and post the link on patient org Facebook pages and membership forums.

Also reach out to advocacy orgs for disability, welfare, the over 50s (when many people develop long term health problems and life-threatening diseases), platforms for the elderly, children and teens with chronic illnesses, and for caregivers.

In the DSM-5 Field Trials, one in six patients with cancer and coronary disease met the criteria for SSD. Dr Frances and I would be interested to hear as soon as possible from representatives of advocacy organizations for people living with illnesses like cancer, heart disease and diabetes and from spokespersons for other chronic illness organizations.

There will be a new initiative launching in the New Year that patients can help publicise – keep an eye on my site for announcements.

Thank you,

Suzy Chapman and Dr Allen Frances

suzy.chapman(at)virgin.net

Related articles

• Physical Illnesses May Soon Be Labeled “Mental Disorders” (psychologytoday.com)
• Mislabeling Medical Illness As Mental Disorder (psychologytoday.com)
• Mislabeling Medical Illness As Mental Disorder: The Eleventh DSM 5 Mistake: Allen Frances, MD (dxrevisionwatch.com)
• 11th hour call: “Mislabeling Medical Illness As Mental Disorder”, Allen J. Frances, MD. (dxrevisionwatch.com)
• Physical Illnesses May Soon Be Labeled “Mental Disorders” Toni Bernhard (moniquesfibrocommunity.wordpress.com)
• Another Huge Problem With DSM 5: Somatic Symptom Disorder, or Mislabelling the Effects of Medical Illnesses as a Mental Disorder (lizditz.typepad.com)
• DSM5 in Distress by Allen Frances, M.D. (moniquesfibrocommunity.wordpress.com)
• Psychiatry goes insane: Every human emotion now classified as a mental disorder in new psychiatric manual DSM-5 (ascendingstarseed.wordpress.com)

Contemplations

I lay here thinking about the new year coming up. I am so thankful I am still here to see it. I could make a list of all the things that have gone wrong, that we lost, that were painful, sorrowful, and bad that we endured this past year and over the past few years and the list would be long.  I have watched my parents, family members, dear friends, and beloved pets die and lost them for now. I have lost my home, my car, jobs, businesses, friends, the use of my legs, my health, part of my eyesight, my ability to do what I used to be able to do…and I could keep listing. And I could hold on to these things and keep them in my present and in my future..that is a choice.

I could also make a list of all the good things I have gained over the past few years. I have gained a simpler lifestyle, a home we own, a wonderful caretaker that is my son, peace of mind, harmony, joy, better doctors, a new medical center called The Jewish National Hospital that has put Hope back into my life for my health.  I have family, family of choice, loved ones, friends and internet friends that love me, accept me and support me in my life.  I am so blessed. I can keep that in my present and my future…that is a choice.

And I think by now you all know me well enough to know I choose the latter for my life and feel so blessed for these things. None of these things “makes” me happy. I am already happy but they bring such joy to my life that it is hard to express in the words I want. Happiness is that place inside my heart that is there always no matter what is going on. It is not squealing in delight over Christmas presents or dancing in the street because of this or that. Those things are joy and can be fleeting. Happiness is a peace of mind, a feeling of contentment that supersedes everything else and is always there to sustain me. It is as much a part of me as my faith is and a core  part of who I am.

Sometimes when people ask me how do I keep smiling and all I can tell them is because I choose to.  Just like I choose to keep the good things in my present and future life and not drag all the bad baggage with me. There will always be things wrong, sad, hurtful, hard…but those things I leave behind with an open heart that says I do not need those things anymore.  Sometimes we hold on to painful things because they are familiar and stepping out to the new..to the future…to happier times is scary. And it is a choice.  This year..make the choice to choose happiness in your heart, to choose joyful things that make that happiness expand and to leave behind all the baggage that only pulls you down.  That is the best kind of New Years Resolution.

Oh I Am So Glad To Be Home

image from fabfindsunder50.com

Home,  home,  home….and on my jelly bed. I am so grateful to be back home. I have lots to tell you all but too tired tonight to go into it. Not all the tests are back but one blood test shows my red blood cells are not all the same size or shape and affects my oxygen. And POTS (Postural Orthostatic Tachycardia)..have suffered for years with it and all the hospital trips really showed it as I was having to lay down in the waiting rooms and pain screaming and BP going off like crazy.
They believe my kidney disease tumors are related to my lung disease tumors..which is good and bad..there is no cure but there is a trial out there on med to shrink the tumors. It is just if I can tolerate it.. Also, because of the feeds off the artery to the tumor in my kidney went in so many directions and was feeding onto good kidney tissue, I am going to lose part of my kidney function. We were prepared for this before the embolization was done. I am so thankful I got to go even if it did feel like hell at times.
My son told me that yesterday he saw me in such bad shape that he has not seen in a while and that it broke his heart. I had to sit 2 hours…2 hours in the wooden chair in the pulmonary test box. She told me I could just quit if I wanted to and I told her that I did not come this far to quit. But, the pain was so bad I had tears on my face. By the time it ended, I drove my power chair out to where son was and was shaking in pain and trying to get my legs u on son’s leg or the seat and he said I was crying saying “my legs…my legs”. I had to lay the seat of the power chair all the way back and lay down right then and son was trying to rub my legs gentle to help east it and covered me with the coat.My pain had spiked to a 9 1/2 (remember a 10 is the pain from being hit by a bus or a bad car wreck) and was uncontrollable. I had to lay there for a while before I went on to the special scan they had lined up. I just had reached my limit. Son told me that was the worse he had seen me in a  good while and he had seen me in severe pain. He had to help me into the motel room with my power chair and onto the bed.
The hospital called today but we missed answering them as son was unloading the van. Anyway, thank you guys for getting me there..thank you for the love, prayers and donations that did it. I would not have gotten there if it had not been for you all And I believe this will be worth the pain and suffering.
Your acts of kindness to get me to Denver, your prayers, your donations, your love and support did it all. You have helped change the life of a person.   LOVE YOU GUYS!