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.

 

 

 

 

From Mini Van to Wheelchair In 10 Seconds!


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I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”.  My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”!  She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.

I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2.  We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do  a lot of outings and I just am not able to babysit alone, without my husband there.  I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident.  My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline.  I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!

So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed.  My pain Dr. is much better now and the regimen that I’m on is safer.  But I’m unable to do the activities that I wish to do with them.  If I was the person that I had been, I would be making snow angels with them in the snow.  I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together.  I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.

Time has changed me and now I am tired and in pain much faster;  more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”.  It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery.  I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all.  I want to spend a whole day at the zoo with my granddaughters.  I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning.  Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference.  Things that I wish I could do, I no longer am able to do.  I love and look forward to babysitting when my husband is home and he is with me.  He is there so that when I start to be too tired and in too much pain, he takes over.

But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident.  My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself.  I couldn’t even go to the rest room without help.  My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad.  When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family.  I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead.  I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.

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Some Facts About Pre-Existing Conditions And The AHCA


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We are the pain community of the United States of America. How are we to know who to believe or what is the truth? Nothing feels transparent anymore, or has it ever been? I am writing this as a non partisan Chronic pain patient. I don’t know what to think anymore or who to believe. I remember President Obama standing right there inside of my Television set, telling me, looking me in the eyes and stating “If you like your Dr., you can keep your Dr.”! He told us that we could choose our physicians, hospitals and that things would not change much, but only get better. But then our premiums and co-pays tripled in amount.  We went from a zero deductible on our health insurance plan to a $1200.00 per person in the family, per year! My husbands paycheck went down to what it had been 7 years ago and the paychecks continued getting smaller. Every test and everything that I have to get done, medically must be paid “up front” for the first $1200.00.  Then they will pay maybe 80%? Our co-pays for medications went from $5 to $40 for each of my several medications and office visits went from $10 to $30 per visit.  Living with too many high chronic pain illnesses to name,  this is really hurting my family.

Don’t get upset with me yet, I’m not putting down anyone, nor am I supporting them. I’m just trying to get the facts out of my head and onto this page.  I want others to know more about both, so they can possibly feel informed.  We all know that  if we read or turn on the TV, to become more knowledgeable about this, sometimes we cannot see the truth from an untruth. It all seems to depend on which channel you watch or what newspaper you read.

With Obamacare we were promised that health premiums would decline by $2,500 per family. But the average premium has gone up and the average family’s employer-sponsored health care plan now costs more than $18,000 a year.  My husband and I have an employer-sponsored health care plan and it has tripled as I mentioned above. Last year in 2016, we saw an increase on the Obamacare policies and in 2017, at least in Michigan and for individuals; the premiums are supposed to go up almost 17%!  The UAW is happy because in 2018, all of their employee provided health care was going to be counted as income and TAXED! It is called the “Cadillac TAX” and it was going to have the middle class working families fund subsidies for poor people. This is crazy! How can people live day to day when they are ill at all? Do they really just wish us “away”?  Physicians are quitting in large numbers and pain Dr.’s are leaving in droves.

Now President Trump comes in and says that he is going to “fix things” for us. But I don’t  know what to believe about this new healthcare bill. We won’t until we read the final Senate approved version.  Below I have described for you a few of the changes that appear to be an improvement over Obamacare:

  • This new Health care Act will eliminate the individual and employer based , “FINE”, or “PENALTY”; which is money that someone has to pay if they don’t wish to purchase Obamacare or have insurance at all.
  • The new Health care Act would help decrease or take away the Obamacare taxes that have increased the premium costs, and limited options for patients and physicians.
  • Everything that I have read about this new Health Care Act, states that  persons with “PRE-EXISTING CONDITIONS” are guaranteed coverage. It also bans health insurance companies from raising premiums for people with pre-existing conditions also.  The catch is this:  You must maintain insurance coverage or sign up for new insurance within 63 days of leaving your current plan. I also read that they are putting 8 billion dollars in a special fund for states to help people with pre-existing conditions.  That is so all of the healthy people don’t have to pay for us unhealthy people.
  • This plan is allowing parents to keep their young adult children or dependents covered until they are 26 years old.  This is a part of Obamacare that I’m pretty sure everyone likes.
  • This plan is supposed to help Americans access affordable quality health care by giving us a tax credit. I read that this credit would be between $2,000 and $14,000 per year for low and middle income families and individuals who DON’T RECEIVE insurance through an employer or a government program

There is a “Public Health Service Act” in legislation that is requiring members of congress to also partake in this American Health Care Act.  So they are saying that there will be “no exemptions” and everyone will be getting the same plan(s). This means that the government employees will have to have the same coverage as the people.

It is very regrettable that so much misinformation is being spread about this bill. I especially feared for the “pre-existing conditions” part of this Health care Act.  All I heard from everyone was that these were going to be excluded and people like me, with many health challenges; would not be covered. But from all that I’ve researched and read for myself, this is the truth:  Under no circumstances can people be denied coverage due to a pre-existing condition!  The laws that we have now will still be in place and can only be changed if a state chooses to take care of us in another way.   No state can take away our coverage based on a “Pre-existing condition”, regardless if they get a “waiver” or not.  From what I’ve read, nobody can be priced based on their health status as long as they’ve maintained continuous coverage of their health insurance.

On November 8th, 2016, by the rules of our American constitution and by the votes of the American people, Change happened! Whether we like it or we don’t, it is happening right now.  One thing we don’t want is for the government to take over our health care.  We need to be allowed choices and to have the freedom to choose our health care.

To reiterate some things that I’ve stated, I understand that members of Congress will have to have the same AHCA as the people of the USA with no exemptions. I also now know that people with pre-existing conditions will not be charged higher premiums, nor will they be excluded from health care coverage. There are special funds for states who choose to opt out of certain programs, it appears.  But still they are saying that nobody with pre-existing conditions will be hurt in this plan. There is something called the “MacArthur amendment”.  This amendment allows the insurance companies to charge higher premiums for a person with a health condition ONLY IF THEY DO NOT MAINTAIN CONTINUOUS COVERAGE. It also only applies to the “individual insurance market”, which really only applies to 7% of the country.  So you see, this does NOT  apply to 93% of the persons with employer-provided coverage or government coverage, such as: Medicare, Medicaid, Tricare, VA benefits and others. One last piece of information is that the higher premiums included in that 7%, can only be charge for ONE YEAR and only to people who did not maintain continuous coverage.  Lastly, the 8 billion dollars for the special state programs will be ON TOP OF $130 billion. This will be available to states through the American Health care plans’ patient and state stability fund.   The states can use these funds to help lower the out of pocket costs, like premiums and deductibles. They may use the money also to help maintain preventative services (annual health check ups), dental and vision care.

Lastly, regarding the AHCA, there will be a refundable tax credit to persons without other health care options so they can get covered and stay that way BEFORE something medically catastrophic happens to them. All of these ideas stated in this post seem to prove to me that people with pre-existing conditions will be covered. But we really won’t know anything until the final version of the AHCA is passed. We can only pray that both parties will try harder to work together and stop so much “HATE” for the other side, whichever side that may be.  The Government needs to work together for something that will be a combination of what the Democrats want and need to work for their constituants and what the Republicans want and need for theirs as well.  We all are ONE COUNTRY and it is turning ugly. I don’t like it one bit. I don’t want to be for or against anyone or anything until I know  the whole truth. I don’t want anyone to be hurt. I certainly don’t want anyone that I love or me, to lose health coverage.  Mostly everyone I love has a pre-existing condition! So let’s just wait a bit, until we have all of the facts.  I’m not for or against either party, I’m just trying to get some information out there for all of the people.

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What You See Is Not What You Get!


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Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain.  Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day.  Some think we are lazy, anti-social or just rude.  We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients.  We must grieve our losses and find new hopes and dreams.  This is the price that we pay for living with chronic pain 24/7/365.

I am still “me” underneath the chronic fatigue and pain.  I still want to talk with you and hear about your day, family and dreams.  In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world.  Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else.  I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere.  Sometimes even sitting on the floor with them.  You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends.  You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?”  If you think like that, I can’t blame you because I once thought those same misinformed thoughts.  What you don’t see, is how I get to the floor or how long I am actually down there.  You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor.  You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm.  You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night.  Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever.  Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day.  Often I fight with myself about going to sleep at night.  Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours?  If I sleep more than 2 or 3 hours, I will awaken and cry.  Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry.  It’ a routine that we have, you know?  My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.

You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights.  I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum.  But even to him, my pain is not invisible.  He knows the grimace of  CRPS and the fidgeting of the intensifying pain on an outing.  He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”.  I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment.  I cannot commit to babysitting for the little ones under school age for a week.  I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.

Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become.  I’m probably not always much fun to hang out with, but I’m still “me” inside.  Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt.  Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed.  I’ve had nasty notes put on my windshield, that would make anyone cry.  One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house.  I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror.  But I was still judged and torn to shreds because of the way I look.

Please know the difference between being able to stand for 20 minutes and being able to stand all day.  The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow.  Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”.  I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends.  Though I may “do” these things; I definitely know that I will “pay” for it later.  I will rest for days in between and sometimes weeks.  But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best.  Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.

Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating.  I’m doing my best to cope and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.

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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.

No Competition, No Winners!


We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST.  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.
Consider Brian Greene’s idea, as he writes about the string theory in clear English : He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life.  Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse.  It even gets more difficult to find things that make you smile again.

Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them! The new “CMS strategy for use/misuse of Opioids” is happening as I write this article . Let me explain.  This is the Centers for Medicare and Medicaid Services. They intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain. There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017;  to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out.  We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief.  (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!  There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications. Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them. I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form.  That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in!  My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific  medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up!  I have to keep on fighting for my rights and for all of our rights!

After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.

Every one of us has real fears, anxieties and true pain.  I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living wth chronic pain have not been able to achieve any of those things, not yet, anyway. What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair”  or that our pain is “the worst”.  But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to  empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.  We  cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.