Living With Invisible Illnesses


 Showcasing what many of us live with and deal with on a daily basis:

Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

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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.

 

 

 

 

Broken Hearts,HOPE & Answered Prayers


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Hello Luvs,

I never thought that this day would actually come. I’ve been praying every day, hoping every day for 9 years +, that my family would be back together again.  I married at age 22, in 1984. We had 2 daughters and in 1992 became legally divorced.  I won’t bother you with all of the trials and tribulations of everything that we’ve gone through, but I do wish to tell you a story of “HOPE”.

When my ex husband left in 1991, I was suddenly alone with 2 daughters, ages 3 and 5 1/2.  My oldest had just started Kindergarten and the youngest just had her 3rd birthday. First I cried until I couldn’t cry another tear. Then I toughened up and bucked up and mustered up the strength and courage to do it on my own.  I had felt pretty much and had actually been pretty much “alone” for the most part of those 8 years. On a Saturday night he took me out to dinner and told me he wanted a divorce. We’d met in Late August 1983 and only 7 months later, in April 1984, we  got married.   So, like I said, he told me that he wanted a divorce on a Saturday night. I freaked out a bit, cried a lot and by Monday, I had gone from a “stay at home mom” to a full time Interpreter for the Deaf at a school system.  I thank God for going to College, especially at that point in my life.

That was the end of September and by June I knew that my “dream job” was not going to work. I needed health insurance because I found out that I truly was on my own; for the most part. My parents lived 35 or more miles away, my mother was very ill and they couldn’t babysit or help in that way.  Next, I got a job at a major University hospital. I was an Outpatient clerk III and an Interpreter for the Deaf. I liked my new job and the independence it gave me. But the first few months I could not get to day care on time to pick up my daughters because the latest pick up time was 6:00 pm. I could not get there without an accident, before at least 6:20 pm because I got off at 5:30pm. I got my father to agree to sit in the car with my daughters until I got there and I was grateful for that. Though I never really understood why he couldn’t have taken them just straight across the street to our apartment and let them get their backpacks off and start homework or get a drink? But hey, I was happy with what I got. I was very thankful. I awoke at 5:10 am every work morning M-Fri, and got ready, showered etc. Then at 6:15 am, I awoke my 3 1/2 and 6 year old daughters. I cleaned them up, did their hair beautifully every day with bows and curls and such. We never “looked” poor!  I fed them breakfast, listened to anything they needed to talk about and we left for Day Care at 7:15 am.  The worst was in the deepest darkest of the Michigan Winters, and taking my babies out into the dark of night and the below 20 degree temps most days, or worse. My youngest used to cry every Sunday night and I hated putting her through it but I had no choice. I loved them and they needed someone responsible and loving to care for them.  I didn’t want to lose their respect some day and let them think that I just sat on my rear end eating chocolates! NO!  I went out and as hard as it was, I got a full time job and for awhile even went back to College to better myself.

For years I had no child support or “on” again and “off” again child support.Finally, when my father in law started paying it, then it came regularly and life became just a tad bit better when I knew that I had  enough to get by for 2 weeks until my paycheck came; and with only usually $20 to spare. I got food stamps and Medicaid insurance for about 6 months, until I could get my own insurance and until I made only $80 per month too much to get food stamps. I was so proud though!! I was soooo proud when I made $80 a month too much to get the $250 worth of monthly food stamps.

So life went on…..much happened and it was hard for us. We all survived and I remarried in 1997 on Valentines day. Then to make this story more about the good than the bad, I have to tell you why I named this story about “HOPE”.  In 2004, my oldest daughter became estranged from us, her family at age 18. She had to find her own way and figure some things out on her own. It broke my heart and I’m pretty sure she felt that her heart was broken too. But days turned into months and then years went by….and by…and by…..

I prayed and I hoped and every Christmas that went by, every Birthday that past and each Mother’s day that came and went, I cried and prayed and cried some more. I would listen to songs and look at photo’s that reminded me of  much harder days but days in which I still had hope, in many ways.  Don’t get me wrong, I love my husband of now 18 years. He is the best thing that ever happened to me & us in  life, other than having my girls. He is my soul-mate and I love him and he loves me and we are a team.

Nine years ago or more, when all of that happened, I had bought a necklace that was gold and silver and has the word “HOPE” on it. I swore to wear it until my oldest daughter and I were together again.   So much more happened throughout all of those years, but that is not for me to write about today.  Today I am only looking forward and not backwards. Finally, today, I can take off my HOPE necklace if and when I so choose, because my prayers have been answered.

I had lunch with a very old friend in August, her name is Janet.  We had our first baby girls only weeks apart and became great friends.  She moved an hour and half away and then I moved and then I got divorced and then her husband passed and life kept changing for us. But through it all we stayed friends.  She met me for coffee one day in August 2014. I told her that I was “losing hope of ever getting back with my oldest daughter”.  I told her how much I love my daughter and always have and always will. I told her how much I wanted her in my life and how we all missed her so much. She told me to “just call her”. But I was just a bit nervous to call out of the blue like that. I mean I had sent notes, letters, gifts etc over the years but then I sort of “gave up”….not on her…but just on trying to contact her again.  So she told me “why not try and text her and just tell her how you are feeling?”…I thought about it and then I did it the very next day!

I am here to tell you to NEVER give UP HOPE!! I texted my daughter and I told her that “I love her” and I told her that “I was thinking of her and hope she was doing OK?” She told me she was “tired of being pregnant and due in a couple of weeks with her 2nd child.”  I had heard that she got married 5 years ago, but I had not been invited nor ever told about it until my cousin in AZ told me the day afterwards.  I was heartsick and heartbroken again.

So…back to the good stuff!  I texted her and she texted me back. I asked if I could have a photo of my granddaughter who was 20 months and she sent me 5 pictures! I was ecstatic!! She said  that she “couldn’t choose” just one single photo…and I was glad for that! Then I asked if she might let me know when the new baby is born and also send me a photo. She did just that!! We started talking then more and more and texting and one day she invited me to come over after she’d gotten home for a few days from the hospital and having her 2nd C-section (she had 2 C sections, just like me)!

Her mother in law was there and my daughter and I hugged and we laughed and we cried. Her mother in law was so nice and funny and I was put at ease right away. This was the beginning for us again. A chance to start new. We have had over 6 weeks now of spending time together. We talk daily and we see each other almost 4 times a week if not more! Sometimes I sit in the car and let her go in and get her errands done, so she doesn’t have to take 2  babies in with her. Other times she comes over to the park near my house or to my house and we have a tea party! I got down my girls’ old small table and chairs set and cleaned them up.  We had a tea party and she and Olivia and I had such a beautiful time.

I will always include her in everything because I remember my mother always took the girls into her room and left me sitting on the couch by myself after I had driven 45 minutes to their house!  She always wanted to have “girl talk” with them “ALONE” and I was not invited. It hurt my feelings but I always figured that as long as my girls were happy, then I was OK too.  But I really enjoyed all of us having our tea party together, even little newborn baby girl was there with us, sleeping…..but feeling the good feelings in the room.

On Monday of this week, my oldest daughter and I drove an hour to her younger sisters house, my youngest daughter and her husband live about an hour from here.  My oldest daughter and I only live about 4 blocks away from each other now! I love it so much!  So anyways, my youngest daughters, 26th birthday is next week, so we took a picnic lunch and went to their house and to the park and went for a little walk.. This was the first time we’d been together in almost a decade! It is a wonderful feeling!!!  I almost forgot to tell you that a week or two after we started seeing each other,  my husband and my oldest daughter saw one another; they hugged and he got teary eyed.

Life is so much better when you can let go of the past and all of the hurts, big and small.  If you can let it all go and start over and refreshed with a new found way of life and have no need for hurt or revenge or anything but kindness and love and a sense of family…that’s when life will turn around!  When I could finally stop and think and let go of all of the old “junk”, that is when my “HOPE” came true and my life is so much more fulfilled now.  Of course there are times in life when one might have been damaged physically, verbally, emotionally and worse. Unfortunately, sometimes in those cases, it’s not always just a matter of moving on. Sometimes just forgiving in your heart, can lessen the load and it can help you move on just to have forgiveness in your own heart. We cannot force anyone else to think, feel or act in any certain ways. We can’t force anyone to feel how we want them to feel.

I am in chronic pain from RSD/CRPS , RA, DDD, SSS, OA, Dysautonomia/POTS/NCS and many other health issues.  I was in a MVA in 2002 and have suffered through 12 surgeries and alot of pain. I have had a heart attack, a CVA (stroke) and I’ve gone to many Dr’s visits. I am through it and sort of on the other side now; and couldn’t be happier, unless of course the pain was gone.  But it’s a lot easier to bear when you feel loved and you are being more loving yourself.  I am so happy that my family is together again.  I will never again hold onto anything bad in my mind, heart or soul.  I give it up to God and I am going to enjoy life as best that I can.  I will have my days in pain when I cannot do anything, but I will have the love of my daughters and granddaughters.  I love them,  my husband and their husbands Thank you for reading my story and please…NEVER give up HOPE…..it does come, but in “his” time, not in ours.  We don’t know why?? But God does know what he wanted me or all of us to learn first.  Thank you again… also thanks for allowing me  the pleasure of posting a few photos from our day at my youngest daughters house and a few others too.

One more thing before I sign off for today.  I wanted to apologize for being away from my writing for a whole month. I try to write weekly or bi-weekly.  As you can see from my story above and the photo’s, I was just very busy this month; allowing things to happen naturally and waiting for the best time to tell you this wonderful news!   imagesabc

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A Christmas Wish


Hello Luvs,

Well, it is the Holiday Season once again.  The tree is trimmed….boy, OH boy is our tree ever “trimmed”!!  We have a 3 yr old kitty cat who thinks that we brought a tree into our house JUST for her to play in!! We actually came downstairs and came home etc…several times and the tree was over on it’s side, after having “crashed” to the floor! We decided to take the the bottom off of the tree and put the top of the tree into the tree stand and put it on top of the end table. So now she can hide under the tree skirt, which is on top of the table and under the tree….LOL…but she doesn’t get into it anymore! I just know she thinks that tree was brought inside just to please her and to give her something to play inside of! Silly Luna kitty!  Anyway, it’s still a beautiful tree, especially when it’s all lit up at night.IMG_3919

So…I’ve been really thinking…..I’ve been thinking about Christmas and the true meaning of this beautiful holiday. I used to get so sad when the people who were “supposed” to be around me during the holidays, were not around  during that time, or any other times. That is a long story for another day…But for today, I want to talk about Christmas Miracles and what I would love for mine to be this year or any time at all. I won’t go into details because the past is the past. But my eldest daughter has been gone for over 9 years now. She left of her own free will.  No one asked her to leave, no one forced her to leave, she just left.  Not a day has gone by that I’ve not thought about her. A holiday has not passed, when I haven’t cried because of missing her. If I could have one Christmas miracle, one holiday wish,  it would be the same Christmas miracle I’ve asked for every year since 2004. I would ask for my daughter to come home, at least in her heart.  She is almost 28 years old and has her own home now. Although I stayed and raised my two daughters literally without any physical, Psychological or emotional help whatsoever;  I pray to see her and I also pray to meet my only granddaughter, who just recently turned one year old, this past November. I didn’t know of the wedding, I never knew of the pregnancy, I never saw the ultrasound appointments, I missed her birth, her first sounds, rolling over, crawling, her first tooth and now I’m sure she’s walking and talking.
When I first learned about my granddaughter, I started a scrapbook. It is a way to keep her in my thoughts and on my mind in a healthy and good way. I’ve kept up a book for both of my daughters as well, since they were born.  I’ve written notes, letters, poems etc. to them both from the day I went into labor and through today. Of course they are older now so I don’t have so much to write anymore, but I still write in it when I find something that I want to share with them.  My friends kept trying to get me to find & look at photos of my new granddaughter. I didn’t want to look because I finally saw a photo of her and then I fell in love, instantly. My “baby” has a baby. Wow….my “miracle” has her own “miracle” now. I started the scrapbook, but it turned into a journal of sorts. I don’t have many photo’s of course and it’s turned into what I call “Letters To Olivia”… I have not done very much, but I’ve started it and have written in it. I “talk” to “Liv” and I tell her about us and her mommy when she was a wee one. I guess I just do it to keep sane. I’ve just lost so much; it’s hard to keep my heart from breaking all over again day after day.
I saw this somewhere and it makes me think of my daughter being a mother now :  “Mothers and daughters are closest when daughters become mothers.” -Author Unknown.  I found these ideas online…they are really several pieces of advice for daughters and I want to share them with you (they are from a woman named BNayden, but I don’t know who she really is, except that she is a mom….like me and……although I don’t usually give too much advice, I thought this was worth reading and sharing:

                                     Advice for Daughters

  1. Listen to your Momma. She will never intentionally steer you in the wrong direction. There may be times you think we don’t have your best interest in mind but we always do.
  2. Don’t be afraid to be yourself. Your family and true friends will accept you for who you are.
  3. Do everything with grace.
  4. Avoid participating in gossip.
  5. Think twice before you post something on the internet.
  6. Learn to cook, clean and be organized for yourself, not for someone else.
  7. Don’t set limits for yourself. Break down boundaries.
  8. You are stronger than what you think.
  9. Read books and watch documentaries.
  10. There is nothing wrong with a little adventure so don’t be afraid to try new things.
  11. In anything you do, remember that there is a reaction for every action.
  12. Be the heroine in your own story. You don’t need a prince to rescue you.
  13. Don’t dumb yourself down to get attention. There is nothing wrong with being smart. Use your common sense.
  14. Respect yourself.
  15. Know who your true friends are. It is okay to let go of people and move on, not everyone is meant to take the next step with you in your journey.
  16. Set goals for yourself and have a plan but know that not everything goes as planned. Always have a plan B and C.
  17. Don’t give up on your dreams. Take it one step and one day at a time.
  18. Travel. Experience the world.
  19. Know what’s going on in the world and in your local community. Keep up with current events.
  20. Be confident and believe in yourself.
  21. Respect nature and the environment, help to take care of it.
  22. Work hard and seize every opportunity.
  23. Be kind, compassionate and loyal.
  24. Not everyone will be on your team. Don’t worry about pleasing them. Keep yourself happy and stick to what you believe in.
  25. Know your self-worth and don’t let anyone else bring it down or make you feel less worthy.
  26. Have faith.
  27. Be courteous and always practice good manners.
  28. Try your best not to do or say anything you will regret later.
  29. Be wise when it comes to money. Save for rainy days and for the future. Live within your means.
  30. Material possessions are not everything.
  31. You are my princess; find a man that will treat you like his queen and he will be worthy for you to treat him like a king.
  32. Be as well-educated, well-spoken and well-traveled the best you can.
  33. Have hobbies, learn to play an instrument, play sports, join clubs and do volunteer work. All of these things will teach you valuable skills and make you a well-rounded person.
  34. You are going to lose sometimes but you will only fail if you don’t stand back up and try again.
  35. Be independent.
  36. Learn to be patient.
  37. You have a rich heritage. Be proud of it and your culture because it contributes to who you are.
  38. Realize when to walk away; you can only give so much until you compromise your integrity and happiness.
  39. Be healthy. Eat well and exercise. Practice good hygiene.
  40. Be passionate about everything you do and what career you choose. It should not always be about the money especially if you are unhappy.

I don’t know why I liked the advice above, but I thought it was really good, or most of it anyways. I just felt like sharing it …but now I’d like to share My Christmas wish:

….I so badly want my daughter to look up to me, like she had done in the past. I want her to see me with the same eyes that she had seen me with when she was a little girl. A time when I could fix anything and a time when a hug and a kiss and some ice inside of the “boo boo bunny” could fix a multitude of “owie’s”.  I don’t want to go back in time, but move forward yet have her remember what she knew of my heart, who she always knew I was and for her to once again KNOW that I still am that “Momma” who thinks of her every day and still fondly calls her “My Sunshine Girl”.  I want for her to realize that though she thought I could fix anything when she was a little girl, I’m just a person who is imperfect and who makes mistakes just like anyone and everyone does.  I so badly wish for her to know that I never ever did or said anything to intentionally hurt her, not ever. Though I never would hurt a hair on my daughters heads, I’m not perfect and I have my own past hurts, issues and inner “demons” that I fight against; while being a product of a Malignant Narcissistic abusive family……what I’m saying…… I suppose….is that I’m sure I’ve unintentionally  hurt some feelings in the past, but not willfully or with malice in my heart.

I have so much on my mind and in my heart this Christmas time. I am older now and feel at peace more with who I am and who I wish to be. I try to find good in every day and forgive the “little” things, because most daily annoyances are just that…”little things”.  I try to find the good in people that I meet, and not be judgemental.  I forgive those who’ve hurt me, even though the “hurt’s” that have plagued me during my lifetime are unimaginable to some. I’ve had not one, not two but many many Dr.’s and other people who meet me, say that I am a “miracle”. They say that they are so surprised that I’m not “dead or crazy.  I’m not saying that to boast about being some kind of “miracle”…no… but to have you, the reader; know and feel what kind of things I’ve endured. If not for any other reason, than to know that I write from my heart; a broken heart.  A heart that I’ve tried to mend over these years and continue to fill it with only love and kindness. I try not to harbor ill feelings for those who’ve abused me in the past, and they are many. I’ve been hurt by just about every person in life who was supposed to love me. I’ve been starved, poisoned, beaten, broken, punished, molested,raped, cheated on and worst of all taunted and teased, called names and the most hurtful of all is the fact that those who are supposed to love me, get pleasure from my pain. It saddens me when I think about it too much. So I just don’t think about it ….and as much as I can push it away, I do!

Anyways, all of that is in the past…oh wait…no… some of it is still happening. When you have Narcissistic abusers in your life, in your own family; it never ends until you break the ties. That  is something which is so hard to do that not many can do it; not many  stick with it for the long haul. God never said that you had to stay with people who hurt you and/or abuse you. But enough of that talk, this is Christmas and it is the season of goodness, kindness and peace.

I’ve always heard it is the time for miracles. I’ve been waiting so long and every Christmas I pray for my Christmas miracle to come true. I pray all during the year as well. I pray every day and each night. Maybe this will be my year for a true longing wish to come true. All I want for Christmas, Lord….is to have my daughter back in my arms again. I don’t care how old she is….she will always be my baby!  “I love her forever, I like her for always….as long as I’m living my baby she’ll be…”…..Anyways, the day will come that my wish will come true, she will feel again in heart what she once felt ……something I’ve always felt and never lost for her…..a kind of love that is deep and true and a special kind of love between a Mother and her daughter…..

Well…anyways…I hope all of your Christmas wishes come true….whatever language you speak, I hope you speak “Love” and keep it in your heart all year and not just at Christmas time….

Photo Dec 02, 4 46 30 PM

Some Have Sight, But No Vision!!!!!


Some Have Sight, But No Vision!!!

Hello Luvs…

    Guess what?? I’ve been nominated for “4” Health Advocate  activist awards through WEGOHealth.com!!  What this means is that people who I’ve possibly helped or people who know me feel that I am indeed an advocate for people with Invisible Disabilities, including but not limited to RSD/CRPS. It would be wonderful if some of my  readers could and would endorse me.  You see, the next step is that I need endorsements from people who know and trust me. Would you possibly be able to “ENDORSE” me?  Please….could you??? Would you please help me to continue helping others ? You can endorse me by going here;http://awards.wegohealth.com/nominees/suzanne-562 for the “Best in show: community or Forum”….OR to the nomination for “Health activist Hero” is at: http://awards.wegohealth.com/nominees?award_id=health-activist-hero and for the “Best in show: You tube” award; if you’d like to endorse me for that…..go to : http://awards.wegohealth.com/nominees/award/best-in-show-youtube and last but not least to endorse me for the “Best in Show” “Best Kept Secret”Award...go here: http://awards.wegohealth.com/nominees/award/best-kept-secret .   These are the 4 links to visit to endorse me for all 4 (four) of these WEGO HEALTH ACTIVIST AWARDS.  If you don’t know me at all, I surely don’t expect you to endorse me. Only if you know me and you believe in me and you believe & that I’m a good candidate,only then should you endorse me .  I would never ask anyone to endorse me if it wasn’t something they felt in their heart and soul.  So please, think about it, would you?  I don’t want this due to a need to make my ego grow….I don’t need this to be somebody, to be an advocate with a drive. I don’t wish this for selfish reasons. I only hope for this to help my CAUSE…..my dream that there will someday be cures for all of these horrible invisible diseases, and especially for the horrible, most painful of all Chronic Pain diseases; “RSD/CRPS” or aka “Complex Regional Pain Syndrome”. If I win any or some or all of these awards, it will just make my purpose be known a little bit more. Maybe someone will say “Oh Yes, that girl…the one who won the “Best in Show: Community Forum” or the “Health Activist Hero” award, she makes that support jewelry for a whole bunch of diseases. She writes about it, has several Social media sites about it and does “You Tube” informational video’s and performance video’s to catch people’s attention!  She’s that woman who has the “Support in Jewelry” website.  Then…maybe, …just maybe…. someone will buy a bracelet from me. I will in turn, keep giving the money that I get from the support bracelets (the majority of it, minus expenses) to Non-Profit RSD/CRPS groups like RSDHope.org. Then…after that…maybe one day…we will have that dollar amount to spread more awareness for…., do more research for….and support more education for these most painful Invisible Diseases, and then one day my dream will come true and there will be less pain.   Helen Keller once said that “alone we can do so little, but together we can do so much”!..She is my hero….she was blind, but she saw more than most people can see…she was deaf, but could listen with her heart….she was mute but said more than anyone I know!!! She said once…that the “most pathetic people, are those who have sight but no vision”…I have a vision. I am pursuing that vision and I won’t stop until I draw my last breath! I may not have money, I may not have a large family and I may have more pain than I can bear some days….but….I am richer than anyone I know, I have the best “family” because I know who truly loves me and I have experienced pain and do so every day. It reminds me not to ever give up!! Thank you….