I found out about American RSDHOPE.org closing their doors long before it hit the mainstream community. I had a “gag order” to not discuss it with anyone. I did as any good friend would do, and I kept my mouth shut. I was shocked and saddened to hear the news though. Today I am still sad to not have that website opened forever for all to get what I got from them. “THEM” meaning the Orsini family, and especially Lynne Orsini, or “Mom O.” to me. Lucky for me, I am “adopted sister” to Keith and “adopted daughter” to Mom O. and I will get the pleasure of having them in my/our life/lives for a very long time, I pray. I’m not sure the entire RSD/CRPS community knows enough about the real people behind the Organization. Today I will tell you a little bit about the people and the organization. Any details about RSDHOPE.org, that I write about today, have been taken directly from their website at: http://www.rsdhope.org. The writing that I do today about the people, the family, the Orsini’s, is from my heart.
First, I’d like to give you a bit of information about the history of the RSDHOPE organization. Keith was diagnosed with CRPS in April of 1993. This was 8 yrs after a car accident in which he broke his back & tore his rotator cuffs. It went to “full body” CRPS. Keith and his family thought that was the “beginning” of this illness. They had not known that he was suffering with this disease undiagnosed since 1974! When he got the spinal injury is when the disease evolved into “full body” CRPS. But actually it all started in 1974 when he was hit in the face with a baseball! His cheekbones were crushed, his nose broken. Keith wanted to stay in the game but his dad wanted him to go to the ER. Dad O. “won” and at the hospital the re-set his nose, fixed his cheekbones.That was the start of the pain, memory issues and all of these things associated with CRPS. But back then they had no name for it. His parents were very diligent in taking him to many hospitals and Dr’s to find out what was going on with him. They never did get an answer but they got “more of the same” that we all still get today! Such as: “your son is on drugs. Your son Wants more drugs. he is seeking attention because he is the 4th child in the family. He is acting out. He is making it all up. The pain is all in his head. He is exaggerating his pain.” A few of the Dr.s’ even tried to say it was a couple of other diseases which they then researched & dismissed. They never got an answer back then. He graduated High school and then College. He continued playing sports all the way through High School. He suffered all of those years with the: migraines, pain above the neck, face, eyes, ears, top of head etc. He had all of the symptoms with Allodynia, sensitivity to sound, touch, vibration, temperature etc. Also, an unusual thing happened to Keith, in that he lost some vision in his left eye. But up until the spinal injury, Keith describes his years with the original CRPS as a “walk in the park”.
It was only in 1993, after the car accident injuries and all kinds of horrible pain, when they finally gave him the actual diagnosis of “RSD”. This is what he suffered with all along since he was 14 yrs. old! The first Dr. told him that the “RSD would burn itself out after a year or so”. Hmmm….he’d had it for 19 yars already, so he was not believing her assessment. Then 3 months later he went to a pain management Dr. who told him to “buy not rent a wheelchair”. (**I remember being told that same thing when I first got my motorized scooter and then my wheelchair, because my shoulders had been injured so badly, I could not maneuver the scooter very well or for very long.My husband and I had tears in our eyes, and I was actually crying when we walked out of the Dr’s office that day. The day that the PMR Dr. gave me a “Permanent” HC placard for the car.)
In 1993, Keith moved back in with his parents. He needed their help and they were there for him every step of the way. He had hoped that after getting a name for his illness and pain, he’d find a wealth of information about it. Instead “he found a huge hole where information should have been”, he said. Keith got out of his wheelchair after about 7 years. He started using it only when absolutely necessary after that.
As you know, the pain of RSD/CRPS is always there lurking around. Sometimes its a 6/7 on the pain scale and sometimes its a 9/10. Just as many of us know, the CRPS is most always a precursor to many other diseases, ANS failure/problems, EDS, autoimmune illnesses, FMS and more. It does weaken our immune systems and this is the culprit.Keith said that same sentence that many of us say, and that is “I wouldn’t wish this pain on my worst enemy”.
In 2008, Keith moved to Florida for treatment and to get out of the cold weather. It made him worse, staying through those cold Maine Winters. First, I want to tell you that Keith is stubborn and I feel like we are kindred spirits. He volunteers at a school with children and reads to them etc. I taught sign language and still try to go in and do that when I am able. We all need to do something because if we do nothing then we hurt more. If we do something then we hurt more. Why not do something to take your mind off of your pain just even for a little while? If you can make someone smile or make a difference in someone’s life, then if you cannot work outside the home, you are still doing a service in life. I volunteer as a Chemo angel, card angel, special assignment angel and prayer angel for the Chemo-angels program. All it takes is being able to write a short letter, say a few prayers and maybe send a little bookmark or a magnet or something fun to someone else who is suffering. But with chemo angels you never speak of your own problems or pain. For that little bit of time, you dedicate your thoughts to someone elses pain.
Do you know that people who suffer from CRPS are in pain 24/7/365? We are in pain all of the time. So why not do something rather than do nothing, if the pain is going to be there anyways? Keith did that and I do that and I know many people with this pain, who try to use whatever they can for the good instead of wallowing in the bad only. That’s not to say that we won’t have bad days, weeks or even months. But whenever we can, we must try to do something that helps us concentrate on someone else and making their day better or giving someone a smile. I like Keiths’ own words when he says that “Just getting out of bed in the morning is a decision that may increase your pain. It is what you decide to do after that that determines your destiny.”
Just like Keith, I have tried many different treatments and pain medications. The Fentanyl patch works for him and it is also working for me. Funny thing is that his insurance company forced him to try a generic patch for a month and it threw him into a horrible flare. I had that same incident happen to me. I’d been using the same generic patch for a long time and they suddenly just changed brands on me! Let me tell you….it is different and its true that not all generic are the same. Just as not all generic are the same as the original medications. Anyone with CRPS knows that once you are under treated and in a flare; it takes a long time to get it back under control. It takes a whole month before you are allowed to get a different medication too. Now days with the way things have changed and are ever changing; the medication situation is getting worse.
People see me and they think “I look great”. Even the Dr.’s say to me “Oh wow, you look happy and great, I’m glad you are doing so well”. Why do they assume that just because I’m trying to be a pleasant person who doesn’t constantly complain, that I have nothing to complain about? I try to do things. I go places and I get ice cream with my husband and grandchildren. We are planning a trip right now to go to a pain conference in Maine for a few days. Am I a little nervous about going? Yes! Do I know that the driving and the days out doing more than usual are going to make my pain worse? YES! But am I going to do it anyways? YOU BET I AM!! I’m a strong and unusually tenacious person. Keith says that he is the same and he makes sure that he does something at least 4 out of 6 days, with his wonderful and beautiful wife, Anjanette. She also suffers with pain from MS. They have each other and that is a great thing to have. I have my Craig, my soul mate, my love, my best friend and now my caregiver too. We all need someone and if not a spouse, then a parent, sibling or best friend. I just “look” fine in my photos because I’m trying so hard. I get up and I put on make up every day or 6 out of 7 days. I get dressed and I try to do at least one thing each day. No matter how I feel, I try to do something or else I would just hibernate and feel sorry for myself.
I got involved with RSDHOPE back in 2007 or 2008 actually. I called from the website and spoke with Keith’s sister Karen (who has since passed away, sadly). She and Mom O. spoke with me and gave me some information and then set me up with a “Mentor”. It was up to me to call her and whenever I needed her, I called her. She wasn’t my best friend but she was my “mentor”. Someone who was volunteering her time to help me when I had fear, questions or unrelenting pain that led to feelings of sadness. She always helped me and I will never forget her. Later, after I didn’t need a Mentor anymore, we kind of slipped away from each other. But I know if I picked up that phone, she would be there again for me. Just as now I’ve been a Mentor for many years now. I’ve been a Mentor for not only RSDHOPE but also for RSDSA . I’m now an Ambassador for the Chronic Pain Foundation.
The reason that I’m writing this article is because earlier this past month, we had to say “goodbye” to RSDHOPE.ORG. The website itself will be open for about 5 years with updated information. The brochures were updated in 2016, so they’re good for at least those 5 years too. Keith and Anjanette took Mom O. into their home. They wanted to be a family together and help each other out. Mom O. couldn’t do the call volume and website upkeep by herself or just the 3 of them together. They just couldn’t keep up the pace that is needed to care for 400,000 people and so many who call on a daily basis. People call needing Mentors, support and a suicide hotline sometimes. We all retire and start a new phase of our lives.
Now is the time for RSDHOPE.ORG aka “American RSDHOPE” to be dwindling down, to retire and to “go on vacation” so to speak. It’s time to “pass the torch” to the new generations. Sadly, that means that there’s a big hole in my heart. A place that I supported for years and years is not there for me anymore. It’s just a website with information. The people behind that website full of wonderful information are still here but they aren’t there. The place that I called “home” for my RSD/CRPS is no more. I thank God that I am good friends and consider myself “family” to the Orsini’s. I thank God that they see me in that same “family” sort of way. I can call Keith up and say “Hey bro” and he will say “so what’s up, Sis?”…I still have my brother, Keith. But all of the people who will not have RSDHOPE.org as a backbone to lean on, like I have for many years;will be missing out on something very special. The Orsini family is special to me and they are always and forever in my heart. I’m happy to have been a part of that family for so long. I’m really happy that I’ve gotten to know them and especially Mom O., who is so kind, loving and giving. When you’re afraid, who do you want to talk to? Your mom, right? Or someone who is very close to being like the mother you’d always hoped to have. That is Lynne Orsini, or my “Mom O.”. She is full of heart, hope and kindness. She always had time for me and my questions and my quandries. I got to know the whole family except for Dad O., and I wish I had known the man who started all of this. But I do know the man who is taking the time to be finished with something that was great in its time and will always be remembered as such. He and Anjanette put this and other things aside now, to be with Mom O….they want to be together as a family for as long as they can all be together. I am happy to have been a part of that, a part of RSDHOPE.org for at least 8 years. Now it’s time for me to move on and keep the Orsini’s in my life in a different way. We chat online or on the phone. We can still be brother and sister, mom and daughter and sis-in laws. We just won’t be doing it from the window of the RSDHOPE.org website. Now we will be doing it as just people, friends and as a family.
I am also happy to be a part of the family of RSDSA and it’s Executive Director, Jim Broatch. I’m excited and joyful to be a part of the US Pain Foundation, as an Ambassador. I don’t care if I have a “title” or a “name”, I just want to be a part of a “family” that does good for people. I want to do good for people. I want to lessen their fears as mine were lessened. I want to do fundraisers by making something or doing something to get the money to help us find a cure for this horrible and painful illness/disease. I want to help children with this illness as does RSDSA. Already I feel like I’ve been “adopted” by these organizations. I have special friends that are also my “family”. I help and do as much as I’m capable of doing with full body/systemic CRPS, among many other painful illnesses.
I get up each morning and I try. First I lay in bed and put in my eye drops because my eyes are so terribly dry, that I cannot even see in the morning or at night either. My husband, who is also the love of my life, my best friend and my caregiver brings me my oral medications. I lay in bed and moan and sometimes I cry as I try to remove the splints on my hands/arms, which are very very swollen and painful. I sometimes cry as I remove the socks that I have to wear to bed. It’s due to the blood from the lesions on my feet that has stuck to the socks I sit up first and my husband is there as I lean on him and try to muster up the strength and suck in the pain for another day. Another day full of smiles and doing what I’m “supposed” to do, to keep this life going in some kind of positive direction. If not for keeping mostly positive, then what would life be for me or for my husband, my family or my new grandbabies. Don’t get me wrong, believe me, I do get negative. Just ask my husband! But I always pick myself up by the bootstraps and keep on holding on. What is the alternative?
Just as we say Goodbye to RSDHOPE.org or American RSDHOPE. Just as Keith and the Orsini family move onto another phase of their lives. As they are now finding out what they’d like to do together and where they want to go in life. I am also changing and growing. I’m finding out who I am in this illness, as a person with “severe systemic RSD/CRPS dissminated”. My family is changing, growing. My husband is gearing up for retirement in a couple of years. I am finding a place or a couple of organizations to set up my roots and grow as a person, again. It’s time to say “goodbye” and when one door closes, another one always opens up.
I’ve always felt at home with RSDSA, as I’ve written parts of my blog for them and I’ve done fundraisers for and with them. I’ve gotten advice from Jim B. when I was nervous about something or when I had a “gut feeling”. He steered me right, but made me make up my own mind about it. I’m getting to know Samantha and others who make up the family of RSDSA. I’m getting to know my US Pain Foundation “family” as well. As we sit here…..as I am writing this, I have a suitcase packed. I’ll be taking my first trip since I got the diagnosis of “severe systemic CRPS disseminated” 4 years ago, in March 2013. Before that time, I had lower extremity CRPS . If that wasn’t bad enough to go along with Degenerative Disc Disease, Connective tissue disease (Polyneuropathy in Collagen Vascular disease = EDS vascular), Autonomic Neuropathy, Dysautonomia/POTS, Arnold Chiari Malformation I and the migraines that go with it, Rheumatoid and Osteo- Arthritis, Prinzmetal Angina/Coronary spasms, Atrial fibrillation, Sick Sinus Syndrome, Multiple herniated/bulging discs at C4,5,6 and L4,5,S-1 with Radiculopathy. I have lesions which are Eczema secondary to the CRPS long term. I have a pacemaker with a cardio messenger box doing EKG’s 24/7/365 next to my bed and sending them via the airwaves, nightly to my heart Dr. in Toledo at UTMC. So much more that I’m getting just too tired to write. So much because people have their own things and after a few diagnosis’, they really don’t want to hear anymore. Can’t say that I blame them. Can’t say that I blame you at all. We all have our own “situations” to deal with. Our own “set of cards” that we’ve been dealt. I’m going to go “play cards” this week with the US Pain Foundation and part of some of my old and new “family”. I’m getting in a car with my husband and driving 2 days (*lucky for me my cousin is staying at my house with my kitty, Luna) to go to a leadership conference. I will get to meet and gently hug many of the people I’ve come to know and love over these years following my car accident and the pain/injuries that have gone with it.I get to have an adventure and meet new people that I will grow to know and love. I will learn from the US Pain Foundation. I will take with me what I learn and use it to help others from now on. How about you?
Let’s all follow in the footsteps of the Orsini family and try to keep people informed and get up each day and do one thing to help yourself and /or someone else to get through their day and yours. We aren’t saying “goodbye” ,we are saying “ or will I get to go here?
There’s still so much out there left for us to see and to do, we cannot let it go because of pain and fatigue. I just can’t let it go. I’ll muster up every bit of strength I have left and with the help of whomever will help me, I will do it. I will….. I can because I’ve already been through so much and I have made it through. I will make it through again..