I just felt like checking in and saying “Hello” today! It’s been so unGodly cold outside and not fit for humans! Well I wanted to update you on a few things . I think I told you my FIL died on Jan 8,2013. We worry because he didn’t accept Jesus or have any kind of “higher power” in his life. He thought all f us who did, were “stupid”! Needless to say, his parents haven’t ever been a big part of our lives.Some people you have to love from a distance, so as not to be continually hurt! Same with my own family! I was in that horrible car accident on 8-11-02…suffered tremendously and continue to suffer every day from lingering, ongoing chronic pain, TBI issues, the 2005 heart attack aftermath of Atrial fibrillation & Coronary spasms, the numbness & right side weakness s/p the stroke (CVA) in 2006, the daily watering,burning & blurred vision, severe dry eyes, convergence insufficiency and most of this comes from the fact that my eyes don’t have a complete blink due to the paralysis from the effects of the CVA & the TBI! I’ve suffered daily now for this going on the 13th year of the aftermath of that one man’s bad decision, to run a red light that awful August day in 2002! After several surgeries, I acquired a progressive, debilitating, most painful autoimmune Neurological disease “RSD/CRPS” aka “Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy”! This disease alone, is considered on the “McGill pain scale” to be at #42 and the highest form of chronic pain known to mankind! It’s right up there next to cancer ( non terminal),childbirth and amputation of a digit w/o anesthesia! The long thoracic nerve pain is excruciating also! I am unable to write or use a “mouse” or do much with my rt. hand,arm &/or shoulder, because of the nerve pain, heaviness and stabbing feeling that happens when I do try to use it. We’ve found that just “using it more” defeats the purpose because it just makes the pain more unbearable!
Imagine sitting someplace, trying to have a nice dinner out with friends or something similar….my heart starts to hurt and it quivers and shakes (this is what I feel, but inside of my body,along with an intense pain and rapid heart rate….there are little blood clots shooting out of my heart and up into my veins. if I’m lucky, the fact that my blood is dangerously thin due to taking blood thinning meds for life, helps to at least try and make sure that those little blood clots don’t get stuck In my heart or my brain. This could cause possibly a worse CVA, worse paralysis and/or even death!)….I know what to do, the routine! I go politely to the rest room, I go into my purse and find & take a nitro sublingual tablet, put it under my tongue, then make sure I am wearing my nitro dermal patch on my chest …& I wait to see if this works! I wait 5 minutes & do it all again …and third time I do it and wait 5 minutes…if the chest pain does not dissipate, then I am off to the hospital or someone must call 911! My Cardiologist gave me these instructions and he said the Coronary spasms with or w/o the Atrial fibrillation, can cause death! I also have what seems to be an insignificant long QT line on my EKG’s! Sometimes it shows up & other times not so much! Yea…but the thing about “long QT” is that you have no symptoms but it can cause sudden cardiac death! So we just put it on the back burner of our brains and we don’t think about it because there’s nothing that can be done…it’ just a little ,nagging “time bomb” !
OK…so next, imagine that your friend,your husband or daughter want to take you out shopping for the day! I love shopping and I always want to go and try! I love spending time with them and who doesn’t love shopping? If I can get up, get dressed and ready to go out….then I do go and try! But if you look at some of my pictures, you can see what my feet look like after only 20-30 minutes of waking. I am very thankful for my cane, Loft strand crutches,walker and motorized scooter! Although this past Summer I had to get my own permanent wheelchair in order to be able to do “longer walking” activities with my family! I am blessed that our health insurance covered it or I wouldn’t have the beautiful memories from our Disney trip with my youngest daughter and my husband, this past June. But then again, I paid dearly after we arrived back home. I had days & weeks of worsened, unrelenting nerve & bone pain in my : neck, lower back, feet,knees, arms, hands and did I say neck? From all of the looking here and looking there and turning my head to see it all & take everything in…I truly suffered afterwards! But as I’ve always said…it is still sooo worth the horrible nerve pain, in order to have these memories/moments with my little but loving family!
I learned a sort of method for being able to do some things without suffering so badly that I’ m down for days afterwards! It’s called “The Spoon Theory”! A girl named Christine Miserandino patented this theory and I will share it with you in short form! It’s like this….we are given only so many “spoons” at the beginning of each day. Every attempt to do something when you suffer from chronic pain etc, takes one of these “spoons” from your daily allotment. Getting out of bed, making tea or coffee and breakfast, then showering & getting ready for the day ahead; this all takes a good 5 “spoons” out of your allowed maybe 12 for each day! So now you have only 6 spoons left, so you need to be careful what things you choose to do. Especially if you have a “date” that night, be it with your husband, friends or whoever? So after washing off the countertops and wiping down the shower and then meeting your girl friend for a coffee…now you’ve used up 3 more spoons which only leaves you 3 left , to go out for dinner with your husband and possibly have an after dinner drink or a slow dance afterwards? But wait!!! WE can’t have a “drink” due to the high potency of the pain meds that some of us are prescribed!! Oh….and we cannot dance due to the chronic pain issues, either! I’d almost forgotten those bits of information! But by then we’ve still used up our “spoons” just trying to be a good friend, mother, partner, wife etc….We are left with one spoon with which we need to get ready for bed…but what about that “thing” our child wants to talk about before bedtime? What about that letter your hubby needs you to help him with before lights go out that night? We have choices to make! I know everyone has choices to make everyday. But with the “Spoon Theory” once your spoons are gone for the day …there are no more! We must choose wisely so as not to hurt anyone else’s feelings, but more importantly to head off the horrible higher pain that will make us suffer relentlessly!,,
Well, I’m wondering if/how many people can relate to this theory?
As for me and my surgery up and coming on Feb 19, 2013…. I think I’ve been using up many spoons, by being fearful and fretting! When the Dr himself comes to speak with you & says “Hi beautiful! I’m so sorry that this surgery is going to hurt much more than the first time. The pacemaker has had 10 years of fibrous tissue to grow around & make itself a home in your body now…as a part of your body now!”!!!!!!! Therefore I have to get general anesthesia, the lovely sore throat (which every new trauma can cause the RSD/CRPS to travel and stay there & wreak havoc on another body part!)….let alone the higher risks involved….but this must be done! He will put me to “sleep” and remove the device from deep inside my pectoral muscle, while cutting the muscles and nerves adjacent….I will awaken in much pain, which will last quite awhile (it takes a full year for nerves to quiet down!) & then hopefully soon I’ll be able to come home and start recovery process wondering all the while “will the RSD/CRPS spread..more…again?
My 16th wedding Anniversary is coming up on Valentines Day! The only man who I’ve EVER truly felt this special love, bond with and the only man who’s never hit or hurt me or anyone ever!! I sometimes wonder why some of my extended family members still remain loyal to my lying & abusive father?? I am the only one in my family who’s actually had a Loving & lasting relationship, marriage !!!!!!! My one brother was married for 13 years “legally-on paper”.. But all of those years he was miserable and he cheated on his wife.The wife our parents chose for him! He asked me to meet him for lunch about 2 weeks after his wedding. He confided in me that he “wasn’t in love with her, what should he do?” He so went n to tell me that he felt like this new “wife” was more like a “sister” or “friend” and he didn’t feel “romantic feelings for her”! He said he’d married her to please our parents and especially after they told him “if he did not marry her, he could not bring anyone else around them ever”! He was unhappy and felt “stuck”! I told him that since he’d gone through with it, he may fall in love later…I mean…it’s not unheard of? I told him to try for awhile at least…that was the honorable thing to do! So he bought a big home on a lake, fancy cars and a boat! All to fulfill his life but after 10 years or possibly sooner, it wasn’t working! His “wife” wanted so desperately to have our parents for her own (being an only child I guess she was looking ahead)…she even pretended to be my “BFF” just to get at my brother to marry her! My mother told me that many times, but I didn’t want to believe it! Now I know it was true! Then my other brother, 2 years older than me, he’s been married at least 4 times and has lived with many more women than that! He’s got bi-polar mental health issues and he’s a scary one when he’s in one of his Psychotic episodes! He even was charged with something I won’t speak of here. Although my parents and older brother paid for the best Defense lawyer, he still went to jail for four months and was on house tether arrest for 9 more months! He was eventually found “Not Guilty”… But that means nothing to me because I believe he did it, just by the way he treated me all of my life! Also by the way his daughter, my niece, has turned out to be someone who has enormous psychological issues and girls or people who do to themselves what my brother did,and most likely still does,and what his daughter does to hurt herself …they are “damaged” people and in need of help…but they deny it! So things never change and the cycles stay the same! But for me…I have chosen health and help! I have the best Dr /Psychologist ever! He has even met them,some of my family! He said that he doesn’t talk bad about people often, but that he got a sick feeling in his stomach when he was with them for a little while! He feels like they are “evil”….*(well any grandfather encourages his granddaughters to NOT have a relationship with their mother! Their mom who totally raised them by herself and who was the only one ALWAYS there for her daughters!! Well…that’s a “sick” “hateful” and “evil ” man!)….
Enough for today….thank you for listening to my true story….I hope the “Spoon theory” helps some of you…who are in physical pain… Love, and prayers …Suzanne