The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

Walking Through The Day With a Pain Warrior


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This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.

***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s.  I try to stay away, keep my distance. For some reason, I cannot “let go” totally.  Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t.  My oldest brother used to try and protect me, but one day he stopped.  It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me.  I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast.  None of them will talk to me or even look at me if we meet.

I don’t get invited to the very very large family reunions.  Even though I was the only one in my nuclear family that ever attended those functions.  I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood;  we could relate to one another.

But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad.  ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or.    cut my own food. She said that “seeing me in so much pain, made her depressed.  If she was depressed, then her family would suffer.”  Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday.  It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again.  Only one cousin spoke to me and only one other even looked my way and smiled.  My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.

**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room.  Only a gathering of many who really don’t know each other anymore, but had one thing in common.  That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us.

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.

 

 

 

 

A Day in The Life of A Brain Injury


           A Day In The Life of A Brain Injury

One day during the Summer of 2002, the sun was shining and my husband and I were walking hand in hand, sipping lemonade at an outdoor Art Fair. We were enjoying the warm air and each other’s company as we walked hand in hand. Afterwards, we’d decided to go into town for dinner because our two teenage daughters were busy with friends for the day. 

We were driving on our way to dinner when suddenly, I heard my husband shout out “OH NO!” I looked and saw a car coming straight at us. Instinctively, I pulled my legs up to my chin into the fetal position and screamed. What happened afterwards is a blur, but I do remember hearing a very loud noise upon impact and then the smell of smoke. Next, there was only a dead silence. I remember wondering if we were dead for about a nano second. Suddenly everything went dark and silent. That’s all I remember about that day, except short little pictures in my mind of the ambulance ride, hospital & ER..

Once I was admitted to the hospital, I do recall being very upset because I could not walk. No one would come to help me when I tried to call for the nurses. It was hard to use the “nurse call” button because my rotator cuffs were torn in both shoulders. Both of my knees had torn Meniscus’ and I had a ruptured Biceps tendon. There were just too many injuries and then the multiple surgeries that followed for many years. I have Degenerative Disc Disease and suffered multiple herniated and bulging discs at C4/5/6 and L4-5/S-1 with Radiculopathy. I had an MRI which showed that I was most likely born with Arnold Chiari Malformation I. It must have been “sleeping” all of those years, the Dr.’s told me. They explained that between the severe whiplash from that MVA & a whiplash that I suffered from a previous car accident; my Chiari had been awakened. I could not hold my head up at all. The pain was horrible and intense. My husband says that when they were doing my X-rays back in the ER; I was screaming because it was so painful. He said that I was crying out so loudly, that people standing in the hallway left; because they could not handle listening to the painful screams. I mostly remember my back and neck hurting so badly that I could think of nothing else.

My husband also told me that he kept trying to tell the Dr.’s that “something was not right” about me. He thought that I was acting very different from my “normal” personality. He said that when he told them I was acting “not myself”, they sent up a Psych consult. Then they told him that “I couldn’t handle the pain because of the abuse I suffered growing up and in my past marriage”. He didn’t know what to say although he knew that could not be true because I hadn’t been “different” just before the accident? After only 5 days in the hospital, and after their lack of being proactive to help me with my pain and injuries; my husband signed me out against medical advice. He took me to the Neurologist who had known me for 3 years at that point.

The Neurologist really got the “ball rolling” and had me tested for anything and everything that could have been wrong. At that point I was in a wheelchair, could not hold my head up and needed a yardstick behind my head/neck with a pillow on it. My husband rigged up a way to help me have something to rest my head upon. I could not dress myself, go to the bathroom alone or even cut my own food.

We finally found out what was truly wrong. Our questions were answered when I was diagnosed with a TBI or “Traumatic Brain Injury”. I went through 6 months of intense PT, OT and speech therapy. After that, I was in Physical therapy for 8 more years and brain injury rehabilitation for 3 full years. The brain injury rehabilitation was done after I’d done poorly on the Neuro-psych testing. Over the next 3 years, I was in a brain injury rehabilitation program. I was there Mondays through Fridays from 9:00 am until 3:00 pm. I had to have a driving company take me to and from the rehab center daily because I was unable to drive due to pain and nerve injuries.

I could not comprehend what I was reading and had a hard time finding the right words to use while speaking. I was more than forgetful and couldn’t remember my phone number, social security number or my own address. The tests showed that my short term memory was terribly low. I went to speech therapy, Physical and occupational therapy and had to re-learn how to drive via Drivers Rehab training. I did pass in the end, but can only drive a few miles for personal errands. They told me they were afraid that I might get someplace and not be able to find my car in the parking lot. Also, the nerve injuries in my legs, knees, lower back and neck; make driving terribly difficult and fatiguing.

It was and is very frustrating to go from graduating with honors and having a “photographic memory” to not be able to read a full book any longer. I had read the first 4 “Harry Potter” books and was in the middle of the 5th book, when the accident happened. I still cannot and have not been able to finish the rest of the books in that series. Whenever I’ve tried to read any books since that time; I end up reading, reading again and then re-reading. Every time I put the book down and then try to return to pick up where I had left off; I cannot remember most of what happened before that point. I’ve tried audio books and it is just the same. I try to listen and whenever I stop and try to go back to it; I’ve forgotten the whole beginning again. This brain injury has changed my life because I have issues with: double vision, severe dry eye, incomplete blinks, prisms in my glasses and continued worsening lowered vision. I have a moderate hearing loss and have 2 hearing aids now; when ironically, I was an Interpreter for the Deaf before that car accident. I worked at a major University hospital, Interpreting for Deaf patients and also at a school for the Deaf with Deaf children. My life was and is changed forever because someone was distracted and then ran through a red light. My husband’s life and the lives of my daughters were also changed forever in the blink of an eye. I had been a very involved mother who cooked, cleaned, did laundry and drove a mini van full of teenagers. I still made sure that I went in my wheelchair to every swim meet and dance competition. I didn’t want them to think my love or support for them had changed in any way.

I wanted to mention that I still have bad migraines, usually they are “Chiari” migraines. I have balance issues and my personality changed in that I get very emotional now, when I wasn’t like that before the TBI. I also have a hard time making decisions; along with having the same issues that I’ve had since the MVA. If you have had a closed head injury, a TBI or an MTBI, please contact Brain Injury Association for information.

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


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!

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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Why I Wish To Be An Ambassador for U.S. Pain Foundation? My Pain Journey…


 

**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN,  FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016

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***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”

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