What My Pain Dr Told Me


Hello Luvs,

I wanted to write to you today to share with you something that I know many of us are dealing with these days. It’s about what happened at my pain management Dr. appointment on 11-8-18. First of all, every 30 days, I have to go and endure this treatment and I live with PTSD. It always rears its ugly head the day prior to my appointment with this Dr. or any new Dr. appointments. I’ll just refer you to my other article “Down the Rabbit Hole” if you need a reminder as to what has occurred up until now.

I arrived at the appointment which was in the late morning this time. I usually go in the afternoon because mornings are difficult for me, with my pain issues. But the past 6 months or so, I’ve had horrible anxiety when I know this appointment is drawing nearer. The closer it gets, the worse I start to feel psychologically and physically with the above symptoms on top of the pain. I decided to make this appointment in the morning because I thought it would not ruin our day so much. Just “get it over with” and be done; get on with our day. But it once again, did ruin my/our day.

I’ve had this pain management Dr. since July 2015, after my other Dr. of 15 years left suddenly. At that time I had been on the fentanyl patch and the lollipops for 10 years. This Dr. told me he would only accept me if I took myself off of the lollipops and I did it. I had to suffer through physical dependence withdrawals. I did it at home with my soulmate, my husband.

I’ve never rescheduled an appointment with him, nor have I ever been late. I’ve never run out of meds or asked for them early.  He knows of every medication that I take or have taken and honestly, I don’t feel like its up to me to have to “remind” him that I sometimes take Fiorcet for Chiari Migraines. He and I had a mutual respect sort of Dr./patient relationship up until April of this year 2018.  But that day everything changed and it turned out to be nothing that I did wrong. He had forgotten that I take Fiorcet and it doesn’t always show up on MAPS (Michigan Automated Prescription Service – *explanation found here*: https://www.michigan.gov/lara/0,4601,7-154-72600_72603_55478—,00.html) because its such a low risk medication and not a high class either.  But whether it shows up on the MAPS is not up to me. Nor is it my fault in any way if it shows up or not, as long as he’s known from the beginning that I’ve been on it for more than 7 years.  This one particular day in April, he started being rude to me for no reason whatsoever. I went to my appointments in May, June and July.  But I was horribly anxious and very “ill” prior to each appointment, due to anxiety and PTSD symptoms.

This last visit was another horrible appointment and was the final one for me. I am done being treated like a criminal or an addict! I’m tired of feeling “put down”! I’ve never smoked or drank; nor have I ever taken any drugs. I received one more short acting script and now I will be tapering myself slowly off of the short acting medication as well. It will be horrible because it’s already horrible. It will be difficult and it’s already difficult.  He lied to me in July, telling me that “in Michigan, Fentanyl patch is illegal for him to prescribe (he is a pain management Dr. and Anesthesiologist MD), unless someone has malignant cancer”. I know this is not true and he told me that “I am smart and should be able to verify this online”.  I checked Michigan law and the fentanyl patch warning on the box. It says only that it is “for chronic long term moderate to severe pain that will not be going away.” If anyone has any idea where I can find this in writing; I welcome that information.

I got a letter from my GI Dr. (*see letter below) because he felt it was dangerous to take me off of the Fentanyl patch. With Gastroparesis, SIBO and Chronic Erosive Gastritis; along with EDS type 4/vascular and more, I am not able to metabolize the long acting oral meds. Believe, me, I’ve tried many things and either was allergic, got very ill, it did not help at all or it had large valleys and spikes. The patch just worked for my pain and it was the best match for me and my multiple co-morbidities.

Yesterday’s appointment he told me that “Chronic pain does not kill anyone”. I told him that I was in my recliner now 16+ hours per day due to the pain. He responded by telling me that my cardiologist should not have put me on Clonidine. I’ve been on it since 2015, but went off of it for awhile in between. He knew this also but apparently it slipped his mind because that must be what’s making me “tired.” But in reality, it’s the pain that’s keeping me down. Also, I only get about 4 hours of sleep on a good night.

My cardiologist told me to take 1/2 of only 1mg at night. He prescribed it for me and said it would help with the physical pain & dependence withdrawals. Thank goodness someone cared enough to help me a bit!

I tried to explain that I had resigned from many activities that I was able to do with the medications. He told me that none of this has to do with the medication for pain being taken away after 14 years. He went on to say that “Susan (you’d think after 3.5 years he’d get that my name is “SUZANNE” not “Susan), you and other chronic pain patients are hostages to the pain medications”. These are the same medications that he was fine with for the 3.5 years I’ve been going to him! He also knew that my history was even longer. I’ve been taking opioids since 2005, in order to have some semblance of a life. But just for the record, I’ll let you know that I tried everything else possible fir 3 years, before resorting to the opioids.

This pain management Dr. has told me all along that he cannot make my pain go away. But he can help lessen the pain by prescribing opioids. When he made the “hostage” comment, I responded with; well “instead , now I’m a hostage to the pain”. Yesterday he told us (my husband & me), that all of his patients still tell him they have pain “with or without the pain meds”. I responded by telling him “Yes, that is true, but I had a life with the meds and I have no quality of life now. The pain medication dulled the pain without ever giving me any kind of “high”. Now the pain is much more sharp, pronounced and at the front of my thoughts. I’m not able to concentrate much or put the pain in another place at the back of my brain.”

I started to explain to him that I have several “Physicians, pain physicians and nurses that are my friends online”.  I added that this past week I was diagnosed after an echocardiogram, with “left atrium enlargement”. I’ve had a heart attack, a CVA and a TIA twice. I have Atrial fibrillation, Sick Sinus Syndrome and a pacemaker since 2003. I’ve never had CHF but that’s what this means. I told him that “chronic pain can kill and under treated chronic pain can make blood sugar and blood pressure rise”, which has been happening to me.  He became very upset with me and started to pontificate about how “each symptom needs to be treated by a Dr. who takes care of that problem.  If my blood sugar is high, I need to go to a diabetes Dr. and if my blood pressure is too high, then I need that addressed by a physician who takes care of that issue. He went on to say that “chronic long term pain does not and cannot kill you.  Only acute pain can possibly make BP and HR etc. rise.” But from Dr. Tennant’s own account in his article (Practical Pain Mgmt. By Dr Forrest Tennant MD , from another article, by Pharmacist Steve Ariens, ( Harmful Effects of Untreated Pain )  and this article that I had written last year (that was also published in Ntl. Pain Report), “Chronic pain can kill” (Untreated Chronic Pain Can Lead to Sudden Cardiac Death ), he is the one who is lying.

Inhumane Treatment Of Pain Patients In USA


I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?

How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!

“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!

This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!

You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!

What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!

Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.

Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!

Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?

Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!

Under-treated Chronic Pain Can Kill


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Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!

So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?

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Illness Doesn’t Equal Lack of Faith


 

I have heard  that my tragedies, illnesses, abuse etc. are cast upon me because maybe I am not virtuous enough?  I’ve even heard that maybe I am cursed because I do not have enough faith?  A friend of mine had someone in a local market say that they were going to “cast away the devil in her” because she carries a cane. I have had people say that they want to “lay hands upon me and pray upon me, because I am afflicted”, they feel that their prayers will “cast out evil spirits, or evilness that has caused my afflictions”.  There was  another who  told me that I don’t “have enough God in my life” and therefore I have “so many tragedies” and it is because I “have not forgiven my abusers in this life”…..Sometimes I feel that over zealous, “fundamentalists”, who are excited about God’s miracles, try to “play God” in peoples lives. For instance, I heard about an 18 year old girl who went to a Christian camp and was told that her younger brother need not have died from Cancer, if only the family had more faith! WHAT?  You NEVER know who is going to be stricken with an affliction, an illness, disease or grief.  Put yourself in their shoes and think about what you say.  I am a “Chemo Angel”.  I get assigned a person who’s going through chemo therapy and I send them small gifts & cards of cheer. Right now I have a small, 3 year old girl, with “Langerhans cell Histiocytosis (LCH) “, a form of childhood cancer. Could anyone say that she is ill because she doesn’t have enough Faith or that she’s done something to wrong God and he is “disappointed” in her? Can you say that she has had cancer for 3 out of her 4 years of life, because her family doesn’t have enough faith? NO, that would be cruel and judgemental!

First of all, none of the statements about “illness being due to a lack of Faith”, are accurate. Look at Job and all that he went through!  Job was persecuted because of his faith in God.  Job was given an “affliction”, not because he was “cursed” and certainly not by his own fault.  Three of Job’s friends came to comfort him at the beginning of his worst pain and loss! They were sure that Job was sick and suffering because of the sins he had committed during his life. They told him that “righteous people don’t suffer”. Job always continued to say that he had done nothing sinful or wrong.  In the Bible it does not say that a lack of healing is equal to a lack of faith! God can choose not to heal the faithful, but it is not connected to a lack of faith.

It is cruel, unloving, unkind and just wrong, to say that someone has a lack of faith and is ill, or stricken with loss and tragedy in life because they don’t have enough prayer, faith or enough love of Jesus Christ.  To accost anyone in such a judgemental way does not help but only makes them feel marginalized and more alone.  There are many different faiths in our society. Each Religion has its own set of beliefs, rules and rituals. I’m not here to judge any of these Faiths or  beliefs, but I am here to say that nobody is sick because of their belief system or lack of faith.  People don’t live with chronic pain day in and day out due to any Religious affiliations or lack thereof. We don’t use a cane, a wheelchair or a walker because we do not pray enough.  It does not help a person with chronic pain and illness, to approach them and say any of the words that I’ve stated above. If you choose to pray for someone, then you can do that. But don’t try to push guilt and more pain onto anyone who’s already suffering. That doesn’t help, it only hurts and makes things much worse. Please try to remember to treat others as you would wish to be treated.

Seventeen Positive Resolutions for 2017!


 

 

Wow, I cannot believe that 2017 is upon us already! Only a few more days and I will have gone through another year with unrelenting nerve pain from systemic/full body CRPS and several other painful illnesses. I have a choice to make, this New year, this month, this week and today. I can choose to get up and start again, to make positive choices and be a “doer”. On the other hand, I can go back to bed, be negative and be a “downer”.  That doesn’t mean that some days aren’t going to be “downer” days.  But we truly must try our best to make the most of each day.  I have decided that some of us may need help getting started with the New Year and those pesky resolutions that we seem to start and never keep.

These are the kinds of things we can all do to help ourselves and each other to have a better year than the one or one’s prior.  Here is my list of resolutions for the New Year, 2017:

  1. First of all, when you start to think more positively, you will become a more positive person.  So first, and foremost start to think more positively.
  2. When  you feel that you are having an especially bad day, take the morning to rest and recuperate. Try to do at least one thing in the afternoon, that will make you feel that you have accomplished a minimum of one activity each day.  This activity may be as simple as taking a shower. When you deal with chronic illness, taking a shower can be very draining and therefore, this is an accomplishment!
  3. If you are a woman and you used to wear make up, try putting on making up once in awhile. If you are a man, then try to shave once in awhile and put on some after-shave, even if you live alone. You’ll be surprised at how different and revived it’ll make you feel.
  4. When you wake up in the morning, make a choice for yourself that this will be a “good day”. If not a “good day”; then at least try to make it a little bit better. The more we think positively, the better we will feel. This will lower Blood pressure and negative thoughts etc.
  5. whether you are with a husband, a partner or living alone, try to be more respectful of the other person or people around you. Remember that they are suffering your illness(es) as well. They are missing out when you cannot go with them to places and/or events as much as you are missing out on going. Just be mindful of how your actions cause reactions in the ones that you love.
  6. Get up and out of bed each day. Even if it is only to do a small action, such as moving onto your favorite chair instead of lying in bed all day. If you have a pet, sit with them in a different area. Give yourself different sense of scenery. You’ll see that just getting out of bed can make you feel more positive.
  7. Try each day to either watch a funny movie, read a good book or if you cannot get into this kind of commitment, then find some good articles on the internet to read. These things tend to keep our minds sharp and help with a positive mind set.  Don’t read only the “bad stuff” in the News; or articles about your illness(es).  Try to get “lost” into a fun or funny book /movie or a drama.
  8. If your memory is a bit foggy due to illness(es), try making a list. You can make a list of things that you want to accomplish in this New Year if you want to think long term. If you want to look at this in a shorter time frame then make a list each day, of things that you want to accomplish during that 24 hours. Check off things as you do them.
  9. Try to learn at least one new skill this year. There are so many things to do and many that we can do even if we are not feeling very well.  There are things to do that pass the time, which are more positive.  Some examples of  larger scale activities or skills might be:  sewing, making jewelry, cooking,  knitting, crocheting or learning a new language.
  10. Try new activities on a smaller daily scale, such as:  the new adult coloring books, go to library or get someone to go to the library for you and sign out some magazines and read through different articles, make a scrap or memory book or organize your photos. You could even do something as small as starting a new board on Pinterest.
  11. Remember that “junk drawer” or closet that has been cluttered up all year long? Clean those out and organize and you’ll be surprised at how much better you will feel! A weight seems to be lifted when we start to organize or “de-clutter”! If you cannot do it yourself, ask for help! Many people do want to help us if we allow it.
  12. Join an organization or group that does something good for yourself and others. You could join a support group or start one for a number of different causes.
  13. Volunteer at your local humane society or animal shelter. You can do tasks as simple as petting cats and /or dogs. Give love to an animal and see how that makes you feel more energetic and positive.
  14. Volunteer to read stories to children at a day care center or at your local library. That is a “sit-down” activity that will make you feel useful and children always make us feel loved.
  15. If you cannot get out of the house, then try to do something online. Volunteer to be a patient leader and do positive activities online such as positive Meme’s on Facebook or tweeting positive affirmations for yourself and others.
  16. Make your surroundings seem new, different or better by something as big as cleaning, painting (even just a little bit each day), putting up new pictures or rearranging your furniture. Get someone to help you if you need that. On a smaller scale you can do something as simple as changing your haircut, color or paint your nails. If you are a male, you can buff up your nails, clean them and put on some clear polish to feel and be more groomed.
  17. Lastly, you can find several organizations that need you. There are many church’s, libraries and Senior centers that would love to have you come to visit even just for an hour once per week. If you cannot get out of the house, then try looking into being a Chemo-angel (you write letters or send small gifts weekly to persons going through chemo-therapy). You can start your own “sunshine” type of group and send letters to those who are feeling ill just like you and me. When you do something for others, it helps your own Psychological and physical health.

Above I have given you 17 “New Year’s Activities” for 2017.  If you can force yourself to get up each day, get out of bed and cleanse your body and your soul; you will be one step closer to feeling more positive.  If at all possible, do something each day that makes that day just a bit brighter.  If each day is similar and we do all of the same mundane things, then we will get into a “rut”.  Get out of your “rut” and think of someone else. You will be amazed at how good you’ll feel just by giving some of yourself to someone else’s cause. There are many excuses for not doing, going or getting out of bed. So many of us have chronic daily pain that make it difficult. I understand that because I am one of these people. But I have found that by joining organization(s) in which I have control of how much or how little I have to contribute daily; I can lower my pain if only for a few moments or hours.  By giving of myself and helping others who are also in pain, I can do so many things! What I’m trying to explain is that these things pass the time. The days can become so long when we leave ourselves alone and vulnerable to our own thoughts.  Keep your thoughts as upbeat as possible. You’ll be surprised at how much more energy you have when you are positive. It takes more energy to be negative and many more muscles to frown than to smile. Make someone else smile and you will be a happier person.

I don’t mean that you have to do something every single hour of every day. Of course we all need some down time. We need our naps & restful periods to regroup,recoup and revive ourselves! Have a Blessed New Year and I will be praying and hoping that you have a healthier, more positive 2017! When all else fails, put on some headphones, turn down the lights and listen to your favorite music! See you in the New Year!

Christmas “Present”


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Hello Luvs,
It’s been a rough few months but now it’s time to get to the “present” and think about the holidays. Even though Christmas day is done it’s still a great time to think about the “true” meaning of the holidays.
We had a wonderful “pre-Christmas” family get-together this year.  It was at our house last weekend before Christmas! It was a wonderful and awesome family time together. I got to have both of my daughters, their husbands and our 3 granddaughters all together under one roof! It was awesome! I got to sit out in my rocking chair, in the living room; while rocking our youngest granddaughter to sleep. She was so quiet, serene and held onto my finger. While rocking her to sleep, it was wonderful listening to the chatter throughout the house. Everyone was happy, talking and laughing.  It’s times like these and occasions like this that are the foundation for building the memories we wish for ourselves and our families.
Now…I know the word “family” can hit a nerve with some people, especially during the Holiday season. But you know that you don’t have to force yourself to sit in a room filled with people who: put you down, denigrate you, degrade you, call you names, hurt you and don’t love you the way they should. YOU are worth more than this! Why people do this and complain about it, I will never understand?  A “family” doesn’t have to be biological. Your family might be a group of your chosen friends.
I’ve come to the conclusion that we put too many expectations on the Christmas season. This is why so many people get more depressed, stressed and the suicide rate is even higher at this time of year.
If you have read any of this blog from the beginning, then you KNOW that I have some reasons to NOT like Christmas time and/or the holiday season. My mother died on December 22, 2002~and my grandmother died on December 30, 1986! I’ve got health issues and most of all chronic intractable pain! I have a progressive, most painful Neurological and autoimmune disease called “RSD/CRPS”. It is also known as “Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome”. Mine is systemic/full body, disseminated and severe. I have Dysautonomia/POTS/NCS and you can just *Google any of those if you wish.(If you have any questions, please message me because I can send you in the right direction if you are suffering from any of these illnesses and I may be able to help with some others too!)
My message to you this holiday season, is to try and NOT go if you don’t HAVE TO GO!~ Don’t spend time with people who don’t deserve you. Concentrate on those that are there for you all of the times, good and bad. If you must be alone, you can turn on music that is calming. You can watch Holiday movies or even drama, adventure films or comedies. If you feel like you want to get out of the house, it is OK to go to the movies by yourself. They are open on Christmas and New Years day.
Spoil yourself and sit with a comfy blanket, read a good book or play with your IPAD, laptop or your smart phone. You may choose to color with markers, crayons or chunky crayons (if your hands hurt badly) in those great new adult type of coloring books.  You may choose to bake,  do crafts or make a scrapbook.
The other thing is this….if you really have someone that you love and you want to be with them but you can’t possibly be there. That’s what SKYPE and /or FACETIME are for! We have friends in Scotland, Australia and Singapore and on Christmas sometimes we turn on the Face time or Skype and we open our pressies from each other IN FRONT OF EACH OTHER! Isn’t that way cool? Technology has become a life saver for many people.
If you are full of bad memories and they are clogging up your mind. Try to think of at least one or two good memories that you have?? I remember our church program one year when they had videotaped children seeing their Military parents come home for Christmas! These kids were in awe with their mouths as open as I’ve never seen before. They were genuinely excited and totally surprised to see their father or mother. They hadn’t thought they’d be seeing them and suddenly that parent walked into their classroom or someplace where they could surprise them well! The looks on their faces were precious and priceless!
I have a GOOD memory,that I want to share with you today. Much of my blog is about some of the bad things that have happened and seems to continue to happen to me throughout my life. But today, I want to share a happy memory and I hope it will help you through your holidays that sometimes can feel “empty” and /or “hopeless” when you are not celebrating as the rest of the population “appears” to be celebrating. Just remember, you have to make your own atmosphere and do what you can to stay “afloat” and not get too sad. There are some suggestions above, that I’ve given you. There are others in books and blogs and websites, you just have to go and look for the help you need.
Here is my happy memory:  When I was about 12 years old, I had made friends with a “grandma” type lady down the street from us. Her name was “Mrs. Usitis” and she invited me to tag along with her to Pennsylvania from Michigan where we lived. My parents allowed me to go because I was going with her and she was taking me to visit with her grand niece who was just one year older than me.
We arrived and I stayed with the young niece and her parents and Mrs. U. stayed with her sister and brother in law. I had a wonderful time and they treated me very well. But I just didn’t know them well, yet..at the time. I had never been away from home or even really never spent the night anywhere before that. I was homesick. I missed my bed and my mom and dad.*( I don’t have a ton of bad memories as a very very young child. I have some and some that I thought were “normal” and I’ve since found out that they are not “normal” and they were downright abusive even then, when I thought my family was “normal” and that I was the “bad one”.)
My mom got my phone calls and I couldn’t sleep or eat and I felt really far away from anything I knew.  She spoke to a cousin of hers in Pennsylvania and they said that the friends who I was staying with could bring me to their home. They thought if I was with “COUSINS”(even though I’d never even met them), that it might help me feel more comfortable. I still felt homesick and was crying and wanted to go home, because I didn’t know them either. They were as nice as they could be to me!
As I was walking around their house one day, eating a Popsicle, I heard the doorbell ring. She opened the door and there standing in the doorway, I saw my “DADDY”!!!(My brothers came too, but I didn’t care so much about them being there, as they drove with dad to keep him company…ha ha…). Back in those days, I felt that my dad and my oldest brother were my “protectors”. At the age of 12, in my head, I thought that I was “bad” and that everything that happened at our house was my fault. At that time, I felt that my mom was the more abusive person in the household. As you grow older and get the “help” or much needed therapy; you find that reality is not what you once thought.
I saw the door open and my dad was standing on the front porch. At the same time, I threw my Popsicle out into the abyss of “wherever?” and I ran as fast as possible and jumped up into my dads arms! OH….oh how I love that memory!  He came to rescue me from nothing whatsoever that was “bad”, but just my being homesick for familiar surroundings. I had led and have really led a very sheltered life especially back then. We didn’t go on vacations, I didn’t go out to dinner with my parents or family; rarely even on special occasions. We pretty much went to school and stayed home. So you can imagine what a “culture shock” it would have been for me at that age and after never being out of my state OF Michigan. I mean…I went on my first airplane ride, with a neighbor lady, not someone I knew REALLY well.(But they were the nicest people…they even fed me when they knew I was hungry because I wasn’t allowed to eat much at home, at all.), and was going to stay maybe 10 days to 2 weeks? I cannot remember all of those details, but the best part of that story was when I threw my Popsicle wherever it went, we’ll never know!! LOL ….I ran and jumped up into my “daddy’s arms”.
Now THAT’s a good memory, huh?
I just wanted to reiterate that you don’t have to “choose” to be down, lonely ,sad etc during the holidays. I try to remember that life goes both ways.  There are people who have it much better than me, and there are also those who have a much more difficult existence than I do.  Sometimes it doesn’t feel like a choice because we can get into a “rut”. When pain is all you know and you feel it day in and day out.  When you hurt no matter if you’re lying down, sitting in a chair or trying to walk a bit. It’s hard to not concentrate on the bad stuff. It’s sometimes difficult to see others who are not in pain doing the things that we want to do. But Life is only 10% what happens to you and 90% is the way you look at it, or your own attitude! Try to relax, breathe and enjoy whatever moments that you can and don’t expect anything and you won’t be let down!
Happy Holiday season to everyone. Please pray for our Soldiers who will not be able to be anywhere near home for the Holidays, with their own families. They are out fighting for our country and our lives, our children and grandchildren’s future and lives too!  Pray for them, for the young men and women who are fighting as I write this blog. My friend, “R”, has a son who is in Afghanistan right now. He left just a month ago or so? He is one that cannot make it home for Christmas. So let’s pray for “R” and her son, “S” and anyone else that you’d like to say a prayer for at this time and during this season of Jesus’ birth.

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Hope Is A Verb


img_7869We all lose hope at some point in our lifetime or another. We get sad and start feeling hopeless when too many things happen all at once; that we consider to be “bad”, hurtful or depressing. We may start to feel overwhelmed and this causes some of us to lose hope. Sometimes it is the way we feel inside because of something or some “things” that others have said or done to us or said about us.  Certain words or situations might hurt our feelings or even our ego possibly? The holidays seem to bring about an overabundance of  feelings, situations and even hopelessness. At a time when Charles Dickens’ ghosts would be telling us that we need to learn from our past, live in the present and look forward to our futures. It’s not as easy as it seems. Even the Hallmark Christmas stories, have characters who, by the end of the story, are healthy, happy and hopeful. Those of us living with daily chronic pain are not immune to the difficult, hopeless feeling situations that actually multiply for us during the holidays. You see, we get these feelings on top of  debilitating pain and most often, that brings with it, several illnesses and disabilities.

You might say to yourself, “What is she talking about? Why is she writing such a “downer” as this, during what most see as a happy time of year?” I’ll tell you what I’m talking about. It is this 4 letter word “HOPE”. It can be anything you make it, if you just think about it for a moment. People want “HOPE” to be brought to them. They want it as a “gift” from God. Some others think of it as a noun or a “thing” that we are entitled to. But in my lifetime I have come to love this sometimes mysterious 4 letter word. It intrigues me so much that I wear it on a chain around my neck. I have worn HOPE around my neck for years and years. It is my favorite of all words.  I always thought that I’d get out of a bad situation if I just had “Hope”. Things will get better if I just keep “hoping”.  I always thought that if I continue to wear my “Hope” necklace, then one day I will have “HOPE”; the noun, the “thing” that others seem to have.

But I did not “get” HOPE because you cannot wait for it, for the noun or the “thing” to come to you. I have learned that “HOPE” is a verb. A verb is an “action” word.  I have found that HOPE is also an action word and you have to DO something in order to have and keep HOPE! If you keep waiting for it to come to you, that is when you will lose it. For example; as a chronic pain patient, in order to find a good Dr., one whom you trust and respect; you must continue to look. You can’t sit back and “HOPE” that others will find the Dr. for you. You must do the work of looking, hunting on the internet and reading the different reviews about many many physicians. You might have to do the tedious work of going to 3, 4 or even 5 different Dr’s before you find the right “fit” for you. But after you do the actions, then you can receive the “HOPE”.  It will be rewarding to actively do the “work” or the job of looking for and getting what you want or need for yourself. Along with this comes the feeling of accomplishment and when you put those things together, you will feel more secure, happy and hopeful.  See how it works? If you choose to do nothing, feel sorry for yourself most of the time, and let others do it all for you; then there cannot be much HOPE. If you try your best and keep making the end goal of having and keeping HOPE; making it a verb and doing the actions; I think you will be surprised at how much better you feel inside.I’m not saying that you can never feel sad, loss or grief.  It is OK to feel sad sometimes, as long as you can get yourself back in time, before the loss of hope comes.

I have an example for you, and it just happened to me during these past few weeks.  I was feeling sorry for myself and a bit hopeless. Silly as it seems, I had taken off my “HOPE” necklace and everything just appeared to be a bit bleak. I was experiencing higher pain levels because we live in Michigan and it’s been so very cold. I don’t like going out much or at all during this part of the year because of the higher pain levels along with extreme cold. But I do want to go out, because this is my favorite season of  helping others, HOPEfulness and cheer. I love the lights, the music and the Christmas trees. I usually feel happier even when staying inside with my cat in my warm, cozy chair. I enjoy drinking something hot and watching the overly dramatic Christmas movies. But these past few weeks I had been feeling down and a bit hopeless.  I was feeling that I was trying even when I didn’t feel good enough to try anymore. I continued “doing” when I didn’t feel well enough to do the things that I just wanted to do.  But I was adamant about doing those things anyways. I realized that you must stop and take a time out, when you need one. It’s OK to be sad for awhile, but just when you feel that HOPE is lost, that is when you are keeping it as a noun and something that is given to you. But things will turn around when you remember to keep HOPE as a verb. Keep it as an action word and one in which you have to do something in order to have it. When you make HOPE a verb,something always happens to change the negative feelings in your life.

Just when my HOPE was draining, I received a large envelope in the mail.  Inside was a blue folder with the seal of Michigan on it. When I opened it, I started to cry and I was ecstatic. What I held in my hands was a “Special Tribute” from the Michigan House of Representatives  and from the Governor,  Rick Snyder!  I’ll Post a photo of the “Special Tribute” here so that you can read it. I have been rewarded when I have never asked for any rewards. I received a special tribute for the advocacy work that I do and my “compassion for others”.  I don’t have any idea where it originated?  I know who signed it and sent it to me; but what, how, why me?  All I know is that I was feeling down and tired of constant pain, even though my pain is somewhat controlled. I was losing HOPE because I was waiting for someone to give it to me. I had to remember again, that it is an action of “doing something”. Though I did receive something in the mail that truly cheered up my spirits. In the end, I did something to make it happen.

Don’t lose hope because it’s not something you can “hold or touch”; it’s something that you “DO” or “act upon”. My hero was an Advocate, Helen Keller.  She was blind and Deaf, but she never gave up. She was tenacious and I strive to be like her. Especially in that I’d gone to University to be an Interpreter for the Deaf and blind. I worked at a major Hospital as an Interpreter and at magnet schools for hearing impaired children. Then, in 2002, my car was hit by a man who ran through a red light. I won’t go into the multiple injuries and surgeries. But I will tell you how ironic it was/is that I am fluent in American Sign Language. Deaf culture & ASL have always been something that I love.  As a result of the car accident, I also suffered a “Traumatic Brain Injury”.  Part of that includes hearing loss and vision issues. I have a convergence insufficiency, chronic dry eye, my own hearing aids and prescription eye drops that I must use on a daily basis in order to keep from going blind.

Whenever I feel that I’m losing HOPE, I remember all that I have been through and all that I still CAN do. I try to remember to never stop doing the actions that keep my HOPE alive. Lack of action makes hope die and that is when I remember what my “hero”, Helen Keller, once said: “Your success and happiness lies in you.  Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.”

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