A beautiful song was in my soul today! I went to church and asked if I could use the chapel! So this is “How Great Thou Art” sung by Carrie Underwood! I hope you get chills like I do!
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, do you know what I’m trying to say? 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. A friend of mine who is in my international buddies/bloggers group *( ladies trying to reach out via blogging, to help those of us in pain), she said this and I asked her if I could quote her here in my blog; she approved :
“Consider this idea from Brian Greene who writes on 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/ understanding. One person could feel that their situation is the very bottom of the “pit”. The very “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 RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine. She may scared because she is so young with 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 the love or the dream of being a mother and holding that baby for the first time? Maybe their dream is something different and they’ll not 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 and then even harder to find things that make you smile again
As for me, I’ve lost so much… and 2002-thru now has been a bit more than very difficult. I mean how many people have : lost their mother, their whole family and even their 18 yr old daughter; after raising her almost solely as a single mother? Then later, missed her wedding, and never even knew about having a granddaughter for a very long time; without ever meeting her? How many people have at the same time, suffered from: a CVA(stroke), PTSD from a history of abuse, POTS/Dysautonomia/NCS, a heart attack, TBI w/ 3 yrs of PT,OT & TBI rehab; all while enduring 12 surgeries following a terrible car accident?? Also at the same time, still suffering an added degenerative disc disease,A trial fib, 2 pacemakers, pectoral muscles totally needing to be rebuilt and R.A? All of that,along with “full body RSD/CRPSII”?? What if their RSD/CRPS is in their mouth, eyes, feet, legs, back, neck, knees and even into the chest wall and heart muscle?? Suppose this person also has nerve damage to ears, eyes, legs, feet, back, shoulders & hands? What if they have lost vision and obtained 2 hearing aids as well? Have you guessed yet, that this person is me? I went from leg braces to wheelchair for anything more than 10 minutes walking now. I have a motorized scooter that I cannot use anymore because my shoulders hurt horribly and I suffer from Long Thoracic nerve damage and have other Neurological damage/pain too. I have RA now and cannot take the immuno suppressant meds due to my immune deficiency disease called “Hypogammaglobulinemia”. Oh yes, and I have something called “Long QT syndrome”, an elongated QT line in my EKG, that gives no symptoms but is silent in that it only causes “sudden cardiac death”! My heart also suffers from MVP, Pulmonary valve hypertension, and tricuspid valve prolapse as well. I suffer every day from the TBI and the horrible forgetfulness and memory issues. Not soley “CRPS memory fog”, but deeper memory issues which people don’t understand unless they have true Cerebullar damage to their brain because a man ran through a red light one day while fighting with his wife. Then there is the CKDII and Asthma….. just so many health issues that are too many to mention here.
After my heart surgery this past February, 2013; I found out that my RSD/CRPS has traveled to my heart as well as my whole left chest area. I have so much pain in my neck, my knees, lower back, hands, feet, arms, legs etc, from several of these issues. At times, I’m afraid, I’m sad and I’m lonely. But I know that this is only “MY” worst, not any of yours; not anyone elses. We all have our own certain issues that are specific to each of us. We are all going thru each of our own private” HELL”.
I’m so sorry for each of you in your own separate situations…I cannot take the pain “journey” for you or go thru it with you in a personal way. But I can be your good friend, walk with you, next to you; next to your heart. I can love you and when you’re afraid; I can talk to you and virtually hug you and love you. We all separately need to know that we EACH feel like we are at our “worst” at different times. It depends, but every person has real fears and real pain.. Our own worst is still something we own as our personal “worst” experience, just as we experience our own personal best situations. I hope you all understand what i mean. I have recently read a story of 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 saw read about another, younger woman in the same kind of horrible pain. Both of their personal deep fears and pain came through. The younger one feels that she has so much to lose as she hasn’t even started her life yet. Some of us already have had our children and we’ve had real jobs for a while and may have even been through some good &/ or exciting adventures prior to becoming a Chronic Pain patient. Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger ones in pain, have not gotten to do any of those things, not yet, anyway. What I see through my advocacy with pain, Invisible Illnesses and RSD/CRPS; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the worse off”. We each may feel that our pain is “the worst”…our own personal worst. When I think about it this way, I realize what we are all feeling and I can empathize better with others in pain. I know that they also share these same ideas and solitude in pain. I just so badly wish i could just fix everyone. I love you all so much.. We will not give up, we will not give in and we will not stop trying to fight for a life that everyone deserves.
|The girls having a real Scottish TEA PARTY with their friends…at our house|
|My darling girls in matching outfits at the Toledo Zoo|
|Jessica, Goofy, Momma and Amy at Disneyworld Florida|
|Momma and her girls…Jessy 6 and Amy 4!!|
|Craig and Jessica Laughing with a goat at Disney Animal Kingdom!!|
|Craig doing the Pumpkin Carving with the girls! An Annual affair!!|
|My girls and me in Indian Guides at a Campout!! (My girls are on my lap!)|
|Amy and momma when Amy was on Jumprope team & Momma was coach!|
I’ve been sitting here today reminiscing about my “mommy days”. I know that I’m still a “mommy” and that I’ll always be a “mommy”…but there were those “good old days” when I got to put my mommy-ing skills to work 24/7 and I loved every moment of it!! I loved it from the C-section (*well, OK maybe I didn’t really enjoy the surgical parts…LOL…but the outcome, I must say was pretty awesome)!
I did so much with my girls and for them that I cannot even remember all of it to write it down here. I just did what any Momma who always wanted to be “Momma” would have done! I really and truly tried to “make up” for the fact that their dad was in and out of their lives (mostly ‘Out’) and that he moved 1,000 miles away and told them the day before “Fathers day” at one of Jessica’s baseball games! OH Yes…I forgot…both girls played on T-ball, and girls softball at our church and/or at the Plymouth/Canton girls Softball league for several years running or about until the 3rd grade! After that it was dance lessons again and the other things I mentioned above. They always had CCD or “Religious Education Classes” on Tuesday nights! From Kindergarten through the 8th grade they did that and at the beginning I also taught Kindergarten CCD classes. Tuesday nights or “CCD” nights were fun because we didn’t have much money and that was the night I got them at daycare as quick as I could (but I always did that!!!) and we popped over to Wendy’s, McDonalds’s or Taco Bell!! Then I’d take them over to their Religous Ed. classes where they stayed until about 8:00 pm or so. After that, we went home and got ready for bed, watched a bit of TV in my bed together and then I’d read to them each together or separately (whatever they wished) and I sat on their toybox and sang songs to them nightly. Some of the songs that I sang were: “You are My Sunshine”, “Mockingbird”, “Daddy’s Whiskers”, Adelweiss and a few others! I loved it and lived for it actually!
After a long day working at the University of Michigan Hospitals in Ann Arbor, MI;*(about a 35 minute drive from our apartment in Canton, MI…) I would pick them up at day care and we would then go to our apartment just across the street. I would make dinner, eat dinner, clean up from dinner and never asked them to help really. I don’t know why? I should have taught them better and showed them how to be more helpful but I wanted them to be “kids” as long as possible. To me that meant having fun and doing their homework and not cleaning and/or helping me cook etc. They have plenty of time in their life for doing domestic services and I just wanted them to be happy and have a nice time after they finally did get to come “home”! I guess now I would do it differently if I had known then, what I know now! LOL….I should’ve taught them and showed them how much I had to do and that we were a “team” and we all should pitch in and help. I wish I’d done that and for that I admit that I was wrong! But still, that doesn’t make me a “bad” mother!! I tried to be the very best mother that I could be! I had to really be a mom and dad for many of those younger years.
It’s funny because I never liked carving a pumpkin so much. I enjoyed the experience of baking the pumpkin seeds and watching my girls have fun with it. I loved helping to draw the faces on the pumpkins, with the girls’ faces beaming! To me, that was the fun part of it but the total experience was a Fall tradition. I just always thought it was more of a “dad job”. My girls wouldn’t have been able to have the experience during those several years when their dad was nowhere to be found. They wouldn’t have been able to have that one Fall tradition that I just didn’t have the strength in my arms/hands to do…the one “dad thing” or single parent thing that I just could not do by myself! Luckily, I had a good friend, Jeff at the time. He was so kind to come over and carve a pumpkin with the girls at Halloween time! I still remember those times and I appreciated his help so much. Another thing that I had a hard time with was teaching the girls to ride their “two wheeler” bike! I would grab anyone and everyone to help me run behind them and along side of them because I was so afraid of them falling and knocking their teeth out or something! But we got through all of those times!! We even got through a couple of Christmas’s when I had hardly any money to buy them gifts and I couldn’t let them down!
What I did those years was really use my imagination; and it paid off in the end! They say those were some of their favorite Christmas childhood memories now! One year the church and the Domestic Violence Shelter gave me quite a few toys, dolls and games to give them under the tree. I was quite appreciative and tried to “pay back” the shelter especially, when I got re-married and re-established into a more normal lifestyle to where I could give back! Another year that I remember was when they wanted all “baby stuff” for their dolls for Christmas! How was I going to afford real baby seats, clothing and diapers etc?? They each had their favorite dolls. Jessy had “baby dear” and Amy had her “blonde baby dear” or her “Mary” doll. Here’s what I did: We came home from daycare/work one night in November and their favorite dolls were gone but a note from SANTA CLAUS was left for them! It said that He “had taken their dolls to the North Pole to fix them all up nicely and he would bring them back on Christmas eve”! They were filled with surprise and wild-eyed childlike excitement! It was spectacular! I was so hoping that they wouldn’t be upset or afraid that Santa had come into our home when it wasn’t Christmas eve. I had left such a *magical note with kind words from St. Nick telling them exactly what he was doing and that their baby dolls would be back, better than ever! They trusted Santa, of course. I made it a good thing and so they took it as just that!
When Christmas morning came it was the best ever! I had gone to the resale shop and gotten: bibs, bottles, baby seats (one for each) and baby diapers, blankets, booties etc.!!! They were in awe when they woke up and saw THEIR own dolls back from the North Pole from Santa’s House and workshop. Their baby dolls had new clothes and bonnets on their heads. They had their ears pierced (I had put little earrings in the dolls ears), some baby items and they were sitting in REAL baby seats!! Oh it was really special to watch their excitement. I feel excited and so happy right now just thinking about these memories! Thank you for allowing me to share them with you!
…I don’t usually write about how I am feeling or how I am doing healthwise here in this blog of mine. I try to be informative and as upbeat as I can. I’ve kept as much as possible to some “horror stories” of my history of abuse by those who are and were supposed to love me. I have a few DIY craft ideas, then a bit more information and a few more stories.
Today, someone asked me “how do you know that the RSD/CRPS has gone to your heart/chest etc? Well this is what I’ve been told by my “team”….of Doctors. I already suffered a heart attack in 2005 (I didn’t have RSD until 2007-but suffered a MVA & many many bad bad injuries/surgeries starting 2002)..long story short…after that I ended up getting “Atrial fibrillation” and put on blood thinners forever, called Coumadin. lab tests weekly, or bi weekly or monthly /depending. Then I started having horrible pain and was put on the Nitro patch and told I was also having “Coronary Spasms” and I had the under the tongue Nitro as well. I’m told to wear the nitro patch daily and off at night…I take a nitro during a worse”attack”, wait 5 min, take another, wait 5 mins and take a 3rd and if it wasnt better to go to the ER….OK…so that was all before RSD….I had a pacemaker placed in 2003 for “SSS” or “SICK Sinus Syndrome/ a brady-tachy arrythmia ” I was diagnosed formally in 2003 with DYSAUTONOMIA/POTS/NCS… I fainted often..my HR went down so low until the pacemaker was set at 60bpm so it couldn’t go to 23 anymore…and Ihad Altenol for the high tachy arrythmia’s. Things settled down. I had gotten RSD/CRPS Type II from surgery in right foot in 2007. By 2010 it had spread to “full body” in my eyes, mouth, neck , upper back, lower back, arms, hands, legs, feet and it just seemed like everywhere. I had to get a new pacemaker this past February 2013. The Neuro-Cardiologist/surgeon had to call a plastic surgeon to come as well, due to the fact that my pacemaker had worn right through my Pectoral muscle!! She had to rebuild my Pectoral muscle ! She had researched RSD/CRPS when she had heard that “the patient (me) had it)! I was so happy when I heard that! She’d researched and found that “IF” they do a wash internally of the surgical area, with “Bipvucaine” (a numbing medication) they can sometimes “head off” the RSD/CRPS from going internally through the surgery site. I had hoped this would be me and my situation. I was so hopeful. OH….and then during my surgery, the Dr came out to speak to my husband, and told him that my “heart had practically “STOPPED” after he unplugged my first pacemaker! It was so slow that I am totally dependent now on this pacemaker!! I use it 87% at last check, and this was just last week! Anyways, I got thru to my first check up after surgery and I looked and felt horrible. My scar looks horrible. They promised me a much “prettier scar” this time! It’s hideous! It looks like a purple caterpillar!! He’s only seen that in 2 people so far…me ….and one other! So…I’ve not gotten well still. I’m always tired and also feel nauseated just slightly all the time. I feel just plain malaise and generally ill and fatigued like never before. My scar burns all the time…itches but cannot scratch it….my heart is too fast all the time…Before it was stuck or set at 60 bpm so it wouldn’t go lower than that and now it is always up around 90, 100 and even 135 the other day. I sweat from it, the area all the time or often, I should say. I feel “HOT INSIDE OUT” all the time just about. I just cant get feeling back to even my old “normal ” pain levels etc. I cannot go far from home. I don’t do what I even did prior to this last surgery. I had stress IV induced exercise test and echo and next, a sleep study to come. They said those tests were “my normal” or same as 2 years ago. They’ve agreed with me that the RSD/CRPSII is inside of my body now and inside of the surgical area/scar and inside of my heart muscle. With Dysautonomia and RSD/CRPSII ..well our heart muscles are made with the majority of sympathetic nerves and RSD/CRPS attacks the sympathetic nerves ..showing how it can affect our hearts if given half a chance.
There are several places on the web to get information about RSD/CRPS. One of my favorite spots that contains a lot of information and is written by a good family and truly good people is at WWW.RSDHOPE.ORG. I also have a PDF file with the name “Systemic Complications of RSD/CRPS”….I honestly cannot remember where I found that research but I’m sure the file will have that information as well. You really have to be your own good advocate. You cannot give up and you keep going and talking no matter how badly some of the people or medical personnel can make us feel at times. Do not give up on your own internal feelings and instinct. More often than not, it is…or I should say …YOU are correct!…If you GOOGLE that title, you may be able to pull up that article or something similar. If you contact me, I can send you that article. I hope if anyone has these symptoms, they will be helped by what I’ve been going through and they will be more informed than I had been at first!
|Amy and Sutton!|
I recently had a surgery in February. I got a brand new pacemaker and it came with a “home monitoring system”. I also got a new Cat in January! Hmm…which one should I tell you about first?
Ok..first off…my youngest daughter got a kitty cat whose name is now “Sutton” and she got her from the Humane Society! She rescued Sutton, a beautiful black, elegant, cute and sweet kitty cat! “Sutty-buddy” is such a sweetheart, she sits on my lap for a whole hour when I go over to visit my daughter. I fell in love with Sutton and now she’s my “grand-kitty”. She’s so cute that she will howl while sitting on the “bar” counter-top at Amy’s apartment. I’m not sure what she’s howling at; but it seems that she likes the clear string of lights across the bar and maybe she wants to just make noise? It really does sound like howling at the moon!! LOL…Now…Sutton doesn’t like to “play” much. If you put a string toy out at her, she may bat at it once or twice but mostly she just sits down like a lump!
Well since my daughter is gone quite often…with working full time and having a great boyfriend, “Grant”. In fact, they just celebrated their one year anniversary of their first date! She has many friends and goes to parties, the casino’s,out to dinner, dancing and so many other fun things! She’s a busy busy young woman. So she felt that Sutton needed a friend and she went to rescue another kitty Cat. That is when she brought home her new white Cat, who she named “Morgan La Fae” (from shakespeare). Morgan is 2 1/2 years old and Sutton is 4 years old. They are both spayed females, but they did NOT like each other at all! After five days staying in Amy’s bathroom, for the most part; switching “on” and “off” with Sutton for Amy’s attention when she was home; and quite a bit of “hissing’ and “growling”; Amy decided that she would have to give up the idea of Sutton having a friend. Sutton is quite happy being the top Cat in Amy’s heart, I’m afraid.
All of these years, both my husband and I have been allergic to Cats and though we‘ve thought about getting a dog…we just haven’t done it yet. I wanted a pet, but after losing my dog, “Kato” after just under a year old, being my BFF and my little “soul-mate”..it was just too hard to try with the chance of that happening again. My heart has been hurt enough and I just couldn’t do it yet..and then still…and then still yet…I never got one. We never got one. But when Amy was going to have to take “Morgan La Fae” back to the rescue shelter to save Sutton from a “bad life”; we decided to give it a try first! We thought it would be a “no-risk” way to try having a Cat. We thought we could try having her in our house and see how Craigs’ allergies did and mine also. We didn’t have to lose any money or our hearts, it would just be a quick few days to see what would happen.
Well, our allergies did happen. We have started taking our allergy meds on a daily basis, but it’s not so bad! We had this beautiful and quite skiddish and sweet all white kitty Cat with emerald green eyes. She has eyes to which one can see through to her soul. She was neglected and possibly abused. She was taken with her kittens from a “hoarder’s house. The people who she lived with before the foster mother, are now in jail and our newly named Cat, “Luna Skye”, has captured our hearts forever!
Luna and I are kindred spirits! We have both had a rough life and people didn’t like to feed us! She is 2 1/2 years old and will NOT eat any kind of treats. She loves to play, likes to be a bit affectionate a bit now and then and she is as cute as a “button”! It’s sad because she slept a few nights with me in our bed, but then when I got home from my surgery, my pacemaker replacement and rebuilding of my pectoral muscle, surgery; she stopped sleeping with me in the bed. We’ve just figured out that it may be the “home monitoring system” that came with this new kind of pacemaker. It tracks every beat of my heart 24/7 and if something is wrong, then a yellow light comes on and we have 3 days to call our Dr. If a red light comes on, then we have to call the Dr. right away. But after researching and coming up with nothing, I decided to write to the Pacemaker Company and to the Pacemaker club online. I asked everyone several questions about the possiblity of this “home station” in our bedroom making some kind of high pitched noise that people cannot hear but the Cat can, possibly hear? I’m still waiting for a response. But in the meantime, we’ve moved the monitor into our spare bedroom, but now I have to go into that room for awhile each day to let it send my heart rythms to the Dr. …although I’m not sure how long I’m supposed to sit there? I guess we’ll start with 30 minutes and find out from the Company?
You see…this monitor sends every heart rythm and every heartbeat good, bad or otherwise through the Cell phone towers and it’s encrypted to the internet. Then a report goes to the Dr. and he looks at the “trending” of my heart and how it is beating on a daily basis. If and/or when something is wrong they’ll let me know. I sure hope that they will let me know how this monitor is working and if it is “Hurting” my kitty Cat’s ears…or scaring and keeping her out of our bedroom.
So..now it’s 4 weeks and I/we have a real live animal in our home! I love her so much and I hope she will become more open to our loving her and maybe one day she’ll even jump up in my lap! I read something on a Cat “board” online, that this guy had a rescued Cat and it wouldn’t be very loving towards him but he still wanted her and loved her. So he just kept on trying and one day after a whole year went by, she jumped up on his lap and it was love at first lap! LOL…..
I know that Luna and I will be forever friends and I hope this pacemaker works well and that I get to live a long life with my soul-mate husband and my beautiful daughter….I also hope that one day I’ll be able to say that I’m living life with both of my beautiful daughters.
You know…I do have some good friends and some of them are like true family to me and to us. Our friends in Scotland, for example..they are such kind and loving, giving people. I talk to them whenever I want because of technology. It feels like they’re right around the corner and then there’s a few other girl friends that I’ve had for many years and they mean alot to me, too. It felt so good to get about 75 cards or so from my fellow “chemo-angels”; all wishing me good luck on my surgery and telling me to “feel well soon”. I got a “Hello Kitty” fruit basket with a H.K. balloon too, from one of my friends who I consider a “sister” in my life; just as my friend in Scotland, is a “sister” to me. She called me every day on “whatsapp” (an app for the Iphone which makes it easy for us to “talk” each day or whenever we wish)…and then there’s my dear friend who is a Pharmacist, and a mom and a wife and a great friend who’s been like a “sister” to me also. She spreads herself so thin, I don’t know how she does it? She even stuck up for me one time when one of my oldest daughters‘ friends was “bullying” me at the mall. No one’s ever stuck up for me before…except for my oldest brother…he used to stick up for me, and protect me when he could.
I guess he can’t now…because he sees things differently than I do…or he chooses NOT to see things the way they truly are and were. But maybe he needs to do that in order to survive in this world. Funny, he seems like the one with “it” all together. He’s a Pharmacist and has his Masters degree and he’s written many articles for Universities. He’s really smart and he works for a Drug company. He travels around the USA and even has gotten to visit Hawaii! He didn’t enjoy it there he told me! There’s another way we see things differently. If I had the great opportunity to visit a beautiful place like Hawaii, I would relish the beauty and see all that I could see. I would do all that I could do and never sit in a hotel room and complain about the humid weather!
He cannot enjoy things because he never has allowed himself to see or feel or experience life in a true way. He lives in a different world of his own making, not his own experiences. But it’s because of his experiences, that he isn’t “free” to be more open to the beauty in the world. Yes, I’ve been through much turmoil, abuse, hurt and the like. But I’ve learned that although I can be hurt by being the “truth bearer”; I also can experience the good things if I allow myself to do so. Rather than worry about cat hair in my house or a little bit of a mess on the floor from a cat bed being out in the living room; I can experience this new life in my home and love this little critter until I can’t love her any more than I do!
I will share a few pictures of Sutton and Luna with you before you go. I hope you enjoy them as much as I’ve enjoyed spending the time with them and taking the pictures! Bye for now…and…..
…….” Small minds cannot comprehend Big spirits. To be great, you have to be willing to bemocked, hated and misunderstood…STAY STRONG!”……………. Anonymous
|Sutton just loves all of those balloons..Can you tell? LOL|