Support Groups,Chronic Pain, And Why Kindness Matters

Support Groups,Chronic Pain, And Why Kindness Matters

 

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When we are in pain, it sometimes can be hard to see another persons pain as well.  I have founded and am Administrator for several Support groups online. Some are for chronic illnesses & pain. While others are for fun and socializing. I’ve noticed that my group for people who love Cats,”The Scratching Post”; is very different than my other groups that are in support of people living with different kinds of pain. The reason that they are so different is because people who are just there to hang out and talk about the silliness of Cats  are usually thinking more positive thoughts and they’re in their happy place. Those of us who struggle with pain, may feel a various number of emotions. We bring those emotions into the group setting. Luckily, in the support groups that I run; I have not had any trouble with drama, in-fighting or bullying whatsoever.  I tend to think that it is because I have been the sole administrator and I take care of anything and everything Before it happens. I always check the “new requests” very thoroughly. I try to keep my groups safe from harm or any kind of researchers that want to “study” us/them. I have had people pretend to be someone who is in pain and they request to join my support group online. A long while back, I had a few interns from various countries, who wished to “study” the persons with CRPS or Invisible illnesses, so they tried to join one of my support groups. I have not ever asked their reasons because they don’t even get that far. I just don’t let them join my groups.

A few of the the ways that I keep my groups safe are by doing a few simple tasks before allowing someone to  join. I look for “signs” on their pages and I ask them several questions via private message. If their page is bare, without even a cover photo or profile picture; I don’t even pursue their request to join. If it just looks a bit “private” but they’ve been on Facebook for several years, then I ask them the questions that I will post below for you. If they have a few friends in my support group(s), or if they are referred by someone in the group; I usually just welcome them to the group and don’t check much more. I will ask the person who referred them or the people they have as their “friends”, if they know them well or if they are just an acquaintance?  Here are a few of the questions that I ask a prospective new member in one of my online support groups:

  • First I will make a statement something like : “Hello, my name is Suzanne and I’m the founder/admin. for the group that you have asked to join (then I name the group)”.  Then I’ll say, “Please don’t feel singled out, because I ask all prospective members the same questions. I like to just get to know you a little bit to make sure that you are in the right group for what you want/need.”
  • Secondly, I will ask them How did you find this group? What were you searching for?(Because my groups are mostly private, which means they can be seen in name only but the posts are private)….this also helps both of us make sure that they’re in the right place.
  • Then I might ask, What makes you want to join this type of group? Do you live with __ or __? (*Chronic illness, invisible illnesses and/or RSD/CRPS), or are you a Caregiver?
  • Next, I will say “When were you diagnosed? Where do you live?”
  • Then I will check everything out and usually allow them to join
  • If they don’t or won’t answer any of the questions, I don’t allow them into my groups. There are many other groups out there and I just want my members to feel safe.
  • If their page has zero information, zero photos and nothing that you can see whatsoever, that is a bad sign and I just usually “ignore” that request to join.

Some ideas for Administrators and moderators of groups already ongoing are:

  • Check the group regularly and just look over the new posts as they come in. Respond as soon as possible.
  • Look for abusive language &/or aggressive behaviors
  • Watch for a person that may be “picked on” or who has the anger of the group “dumped” on them. Act accordingly to figure out and fix the problem.
  • If you have spoken to someone a couple of times and they are rude to you or other members, it’s time to take them out of your group for the members’ sake
  • Ask for help, as I just recently started doing. I just couldn’t be everywhere and do it all. I asked for volunteers, for people who wanted to do some of the things that I cannot keep up with. Such as checking out all of the new members. Watching for any abusive, nasty or negative language or posts; and then telling me about them. Then I can decide whether to delete the post or talk to the person. Either way I will speak to the writer of those kinds of posts; it’s just a matter of before or after I delete it. My new moderators have the choice if it is a very abusive post to just delete it and tell me who and what, later.
  • Make sure that if you do ask for help, you choose people that you relate well with. Also persons who you have known for quite a while and you trust them and their judgement.

Unfortunately, many of us with Chronic pain issues and illness,  don’t always have the most supportive families or friends. These types of people also try to show up in groups to find out information for the “family”. That is another article in and of itself about Malignant Narcissist’s or abusers. If you have a supportive family, that is half the battle; it’s wonderful for you and that alone can help with your healing.

Whether you are a founder/administrator, a moderator or a member of an online support group.  Try to think first before you write, or at least before  you hit the “send” button. Remember that in Facebook support groups, you have the chance to go back and delete what you have written. Just in case you were terribly upset (we all can feel that way sometimes) and you want to get rid of your post before another person’s feelings get hurt or worse. Never carry private or specific information from one group to another. If in doubt, always ask the administrator(s). If you want to re-post an article or something similar, then go to the original Website  where that article was posted and share straight from there. This way you aren’t taking a post from one group and sharing with others. Usually  it is impossible to “share” between private groups anyways; but just in case.

We all continue to learn and grow in our lives each day. I’ve made mistakes before and I try to make amends or change whatever I can, so that I don’t repeat the error of my ways. I do my best to think first before I react or say something to another person, whether they are a friend or foe. Regardless if they are online in a group or out in the world in some kind of group setting. We are all humans and everyone feels hurt when someone is downright rude or is treating us badly. I want to add that if you are going to comment either way about something that someone has said, written or done; always be sure that you know all of the facts first. Don’t just read one line of something that someone has written, and then make a rude or cutting remark.  Don’t try to guess what someone means when they write a sentence or two in a group post online.  Sometimes the short or hastily written words cannot depict the true feelings, ideas or thoughts of a group member.  Keep in mind that some people are better at expressing themselves with spoken words and others are better at writing. Try to not get bothered by the small things, and think about what the “tone” of the words feel like to you; even if you might’ve said it differently.

When all is said and done, remember that we all inhabit this internet world together. We need to be as kind, loving and gentle as possible. There are always times when we say or do the wrong things. What we do afterwards, or the next time; is what matters most. Be kind and remember that the person you are upset with may have a whole mountain of issues, illnesses or problems that you don’t even know about.  That doesn’t give them the right to abuse or hurt you or others in any way. But just get away & remove yourself from the situation whenever possible. It never hurts to explain yourself, if  you feel that someone has gotten it wrong or judged you wrongly.

Lastly, please remember in the support groups for chronic pain, illness, grief, abuse survivors etc….these people are hurting a bit more than the average amount.  Try to be understanding and be a good listener, especially in a support group.  Give hurting members; those who are in much pain either physically or emotionally, a little leeway. Remember to be gentle and kind.  If you felt hurt by the actions or words of another member in your support group, step back for a moment and think. If you forget and then  realize that you retaliated against someone in a group, because you felt angry or hurt; try to make amends. Try to put yourself in someone Else’s situation, if you know it. If not, then try to just be thoughtful of others feelings. Treat them how you would like to be treated.  Remember that Kindness matters!

Living Through Betrayal & Withdrawals

Living Through Betrayal & Withdrawals

I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds. So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (with Dilauded for emergency). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records. So I did it on my own! The partner GP offered to help me for a few months but asap I was told to find another pain Dr. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself. When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges! I was very very ill! The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually. I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it and I’ve done it and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!

Seventeen Positive Resolutions for 2017!

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”

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

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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How To Cope With Pain And The Holiday Grinch’s (Narcissists)

How To Cope With Pain And The Holiday Grinch’s (Narcissists)


The holidays are hard for many people especially those in pain. Also for people with depression, chronic illnesses, invisible diseases and disabilities; the holidays are filled with exhaustion, exasperation, loss, loneliness, pain and so on. Everyone would love the perfect picture holiday with the warm fireplace, the loving family all around, the dog sleeping on the floor and the cat on the hearth. People wish for all kinds of things from true love to toy cars. But most of all, everyone pretty much wants the same thing: a quiet, peaceful home with a loving family all around to celebrate – and maybe even feel well for a few days. 
While others are out participating in the hustle and bustle of the holiday frenzy; those of us with chronic pain are still living and coping with our illnesses. We are still in pain while trying to do all of these “things” that are expected of us. Our children, our families and friends may indeed love us, but they all want Christmas to arrive in all of it’s glory, regardless of our pain and fatigue. The things that we live with on a daily basis do not go away for the holidays. We don’t get a “holiday vacation” like everyone else does. We must push on, endure and put a smile on our face. When we really feel like sleeping, wincing, sitting, resting and sometimes just crying. My advice for all of us living with chronic pain, invisible illnesses and unrelenting fatigue; is that we need to take “time outs”. Take a look at the large picture for a moment and break it down into small increments. Take on one task at a time and stop when you feel the need to stop. Don’t push yourself, as that’ll keep the pain cycle going. Please stop and rest; give your body a chance to mend for a few hours or take the day “off.” You are allowed to do this, no matter what your conscience tells you to do.

There are many of us with chronic illness, who also have invisible illnesses, such as Dysautonomia/POTS, CFS/ME and/or PTSD. It feels as though these illnesses are rarely acknowledged. We need to make sure that we take care of ourselves first, especially during the holidays. This means that when we feel the fatigue coming on, STOP right away! Don’t keep going until it takes much longer to recuperate. There are those who may have MN’s in their family or group of closest friends. That stands for “Malignant Narcissists.” Those are the people who always put their needs ahead of yours. Stay away from them, keep your distance!! The MN’s use the holidays as a time to preach, cause hysteria, pain and grandstand. They are like vampires and will suck the life right out of you if you allow it. You “feel” as though you don’t have a choice, but you really do!! If you are trying to avoid conflict by pretending that it’s “OK” or “not that bad;” then you will end up with increasing pain, more fatigue, internal conflict and much more than what you bargained for. You’ll never get what you think you deserve out of those relationships. They won’t ever be “warm and fuzzy.” They will always put restrictions on you, rules for you to follow. It may be outward or it can be mind games that they play. If you cannot physically get away from them during the holidays, if you must be at the same gathering…..emotionally leave the room!! You need to do this for your own mental and physical well being.

We don’t all have families with the “chestnuts roasting on an open fire” kind of holiday. Some of us get “Jack Frost nipping at our noses!!” We may not have the “Halls decked with holly and people kissing under mistletoe.” Because in families with “MN’s” you will forever have “Grandma getting run over by a reindeer” and many, many games!! If you MUST spend the holidays with these kind of people, if this is your family tree, then the name of the game is “keeping sane and learning to survive.” It’s not about having fun and singing Christmas carols, it’s about surviving the “Big Chill” that you feel in their presence. Be there if you must, in your body, but make your mind be someplace happy and do not get into conversations with them. You must protect yourself and your children. Don’t say “Oh it’s not that bad,” or “they didn’t mean it that way,” or “you don’t understand them like I do.” Because YES I do! I’m trying to help you make it through the days when we are supposed to be “laughing all the way!!” Usually it is the narcissists, who are “Laughing all the way” and they definitely know what they’re doing. When you can stay away, then do it. When you can avoid inviting them into your life, please do so! But when all else fails,”leave the conversation” at least in your heart, mind and soul. Though your body may be there, you don’t have to be!!! Try to never have the party at your own house when you have MN’s for relatives – because then you are trapped and you cannot leave or get away. They will know they have you like a spider has a fly in his web. All you can do is squirm and squiggle but you cannot leave!

Try to take a step back during the holidays, make a personal space boundary. Keep your distance and stick by those who will not persecute you, make fun of you, be nasty or hurt you. The “MN’s” can get you upset, angry and crying; then fly to “save” you. Those who say the word “love” but never know how to really show it, except with unloving examples of unkindness; along with displays of abnormal affection; don’t truly know what “LOVE” is. They aren’t thinking of you, your pain, illness, or your feelings – and they don’t see what they are doing to you or your quality of life. The honest and only way to avoid the pain of the holidays with Malignant Narcissist’s, is to be with only those who truly love you back and with whom you trust. People who truly love you and won’t hurt you – at least not on purpose.

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Try to enjoy your holidays with a smaller amount of people in your circle. If you are living with chronic physical pain; the emotional pain and stress can take its toll on your body even at a higher rate than usual. There are loving, calm and quiet things that you can do with your own “little” family. You can look at lights in the neighborhoods, order pizza and watch holiday movies. But remember that life is not normally like those holiday movies filled with “perfect” families, etc. Unfortunately, we have to learn to survive and help teach our children not to be controlled by the MN’s of the family and friend pool. Life is so much more “choice” than you might think. You don’t “HAVE to” do much of anything that you don’t want to do, except to try to survive. Love those who are lovable and who love you back. But I don’t mean to stop loving the unlovable. I just mean to love them from a distance so that you cannot be “touched” by their damaged spirits or hurt by their abuse.

Good luck, and don’t lie to yourself, we all know that fruitcake really stinks! Just because it is a “holiday” thing….you don’t have to like it or eat it….so just because they are your “family,” you don’t have to like them or spend time with them unless you want to!! Enjoy your holidays as much as possible and take care of your family, your children, your fur babies; and most importantly, yourself!

SIBO, The Missing Piece of Chronic Pain Dysautonomia

SIBO, The Missing Piece of  Chronic Pain Dysautonomia

 

Difficult question

One Summer day in 2002, a man ran through a red light and changed my life forever. I didn’t know what pain was until then, except for childbirth. After the MVA, I went through multiple surgeries, chronic intractable pain and then one medical issue/diagnosis after another. I now have an Autoimmune disease called “Combined Immune Deficiency”, which renders me unable to be a candidate for many surgical pain interventions.  I have several pain illnesses such as:  Systemic/full Body RSD/CRPS, Arnold Chiari I, Polyneuropathy in Collagen Vascular Disease (which is similar to EDS type 4/Vascular), Degenerative Disc Disease, Autonomic Neuropathy, Scoliosis, Rheumatoid Arthritis,Dysautonomia/POTS, CFS, Gastroparesis, Chronic kidney disease II, Chronic Erosive Gastritis, and there are more. I won’t bore you with the rest of the list because you get the idea!  Except for the latest diagnosis that I’ve been given, puts the puzzle together for me in some ways.

Are you a chronic pain patient who has had IBS (Irritable Bowel syndrome) and much trouble with your stomach and digestion? Have  you been diagnosed with Chronic fatigue? Do you have Fibromyalgia? How about Dysautonomia, POTS and EDS?  Well, it took me several Gastroenterologist’s to actually find one that would truly listen to me. One who had knowledge of such things as CRPS and Dysautonomia and ANS failure. We all need to visit specialist after specialist, until finding one who truly listens. Luckily, the GI Dr.that I’ve found, is knowledgeable about CRPS and many of the pain illnesses that I have. He did many blood tests, EGD, colonoscopy and gastric emptying test. He gave me the diagnosis of chronic erosive Gastritis. He said “Do you see the CRPS lesions on your hands and legs/feet? That is what the inside of your stomach looks like”. Then in giving me the diagnosis of  Gastroparesis he explained  how my  Dysautonomia most likely contributed to many things, including the next illness that I would be diagnosed with. I finally had answers and was so relieved to at least know what was going on inside of my body. But that was only part of the puzzle.

Next, he ordered a test for me, called a “SIBO” or “Small Intestinal bacterial overgrowth” test. In the end, it shows if you have a chronic small intestinal bacterial infection or not. Most people have this test and it can last up to 3 hours. Mine was positive after only 20 minutes, because the numbers tripled during that time! I was given a positive diagnosis for “SIBO”, and then a couple of medications; including an antibiotic. They printed out an information sheet and made me a  return visit appointment with the Dr. in a few weeks.

I actually rushed to my keyboards in order to share this information with my “pain friends” and the “pain community”. This is an important piece of the “puzzle” for many, I believe.  I will try to explain this in the best way I know how, but you need to talk to your physician about it,  in case it could be part of your puzzle.  You see, we all have the “normal” bacteria in our GI tract. The small intestine not only plays an important role in digestion and getting the nutrients from our food, but it also plays a very big role in our immune system and fighting infections. The “good” bacteria help with absorbing vitamins and nutrients such as Vitamin K, A and folate. They even help with the muscles that move food through our systems.

SIBO is essentially a chronic infection of the small intestine.  They have found it shows up positive with many chronic conditions. It can lead to various IBS symptoms such as: bloating, abdominal pain/discomfort, Diarrhea, Constipation, Gas/belching and in more severe cases there can be weight loss and the symptoms related to the vitamin deficiencies. One of the biggest issues it causes is called “leaky gut”. But it can “mess with” our immune system as well. This in turn, may cause an increase in allergies, food sensitivities, fatigue, altered cognition or “brain fog”, pain and other neurological symptoms. SIBO is a bacterial infection but it is NOT contagious. It is very hard to treat because antibiotics are used, but in about half of all patients it returns within a year, maybe several times. Extended use of antibiotics is a risk factor for SIBO! It has been studied and most patients with Dysautonomia also suffer from SIBO! There are several publications out now, that find a strong connection between SIBO and Fibromyalgia as well.

So why am I telling you this?  Mostly, because many people who have CRPS, EDS, FMS, CFS and other pain illnesses or ones which cause fatigue, also have Dysautonomia. Abnormal autonomic function can cause many varying symptoms, including:  fatigue (*not just being tired, but a lack of energy so severe that has a huge impact on a patient’s life), sleep disturbances, altered cognitive function (*known also as brain fog), cold/heat intolerance, headaches (*headache upon waking up are common with ANS dysfunction), bladder/bowel dysfunction and stomach pain (*GI symptoms such as: bloating, early fullness are a part of ANS dysfunction as well). Digestion is a large part of the Autonomic nervous system. In addition, many people with EDS Hypertonicity/Spasticity or abnormal muscle tone have Dysautonomia; along with POTS (Postural Orthostatic Tachycardia Syndrome), Visual disturbances and altered sweating.

Treating this small intestinal bacterial infection (SIBO) is very challenging. Treatment is more than just helping with IBS symptoms.  SIBO, as I have discussed, is often present with many of the autoimmune or chronic inflammatory diseases. Getting rid of the “wrong” bacteria is most important. I was given an antibiotic and probiotics. But some patients, I’ve read, are given antimicobials, and pro kinetic agents such as low dose Naltrexone.

If you have any of the symptoms of SIBO that I’ve mentioned above, talk with your GP or see a Gastroenterologist, a specialist in digestion and motility disorders. For more information you can visit: https://autonomicspecialists.com/symptoms/, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/, http://www.thedysautonomiaproject.org/‎, https://draxe.com/sibo-symptoms/, http://www.mitoaction.org/files/Dysautonomia.pdf, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/

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I want to add that SIBO is just another painful part of  living with Chronic Pain illnesses. The diagnosis of Combined Immune Deficiency disease,  makes me one of those persons who needs access to Opioid pain medications. Due to risk of infections and an even higher risk of paralysis; I’m one of many pain patients  who are not candidates for SCS or a pain pump. We need to be heard and to keep our voices going strong. Continue to reach out to our Government representatives, regarding the error in  labeling us as “addicts”.  A grossly incorrect label given to those of us living with chronic daily pain but who require Opioid pain medications. The majority of Chronic Pain patients take these medicines responsibly. We should not be lumped together with Heroin addicts and those persons who abuse drugs. I/We do NOT get a high, nor do I/we crave our pain medications. We require them just as a diabetic needs insulin. In my own life, the Opioids help my CRPS, the horrible burning nerve pain & give me a reprieve. In the same way that other medicines help people with different specific illnesses. If the diabetic or the person with high blood pressure stops their medications quickly, they will get very sick and could even die. Why can’t the CDC, DEA, PROP Dr.’s and our Government see this?  That I too, can digress, get very ill and even could have seizures or a heart attack if I am abruptly removed from my Opioid pain medications? The exact pain medications that I have been prescribed and have been taking  at the same or lowered dosage since that auto accident in 2002.

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