Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@artscaping

Good afternoon. This discussion is an effort to give everyone an opportunity to share their neuropathy journey....all in the same discussion. How helpful will that be......you can then use the search field by topic or treatment. As your journey continues, it will be great to keep up with each other and add to our neuropathy knowledge bank.

So....here we go. My favorite saying when I learn about something on Connect, "if only I had known" or "if only I had done some research", or "if only I had begun posting earlier"

The scene:......................patio breakfast and a few games of cribbage with my e-harmony friend, now life partner, about 7 years ago. We set up the board and he handed the cards to me to shuffle. When I tried and they scattered everywhere, he asked: "What's the matter with your hands?" That was my neuropathy coming out party.

Next steps: ....................I revealed my situation to my two nurse friends. One offered me essential oils, the other medical cannabis. I chose cannabis because I knew my pain level was too high for well-intentioned essential oil products. To this day I manage my pain with a few CBD: THC products…..tinctures and topicals in different ratios. I was beginning to have high-level pain in my arms, wrists, and hands, electric shocks in my head, and burning pain down my legs as well as inside my abdomen. Good thing I had a coach. I would have been overwhelmed with all of the experimentation and evaluation required at that time to find the best medical cannabis products.

In the meantime:............My orthopedic surgeon was consulted because at the time I had fallen down the stairs and needed a rotator cuff repair on the left side. He had previously done the reverse shoulder on the right side and I thought possibly it was "in trouble". He immediately took X-rays and went with me to his "buddy" who does spine work. They collaborated, put a hold on the rotator cuff, and did the cervical fusions first, rotator cuff second. I didn't even know enough to tell the difference between thoracic and cervical. I did remember lumbar.

Enter the neurologist:.....Only after the cervical surgery had healed and fused, did I learn that the pain, tingles, and needles, were still there which led to more tests and finally a punch skin biopsy to confirm that I had small fiber peripheral neuropathy (SFPN). It was not a bad shoulder surgery and I wore that darn brace for 3 months so there would be no claim of bad neck surgery. I also learned that my idea of slow learner had no comparison to bruised nerves that need to heal to be helpful.

Bump in the road:.......... I had to get off of an anti-depressant that really helped my early-onset EOL ideation because of digestive side effects that were just too much to overcome. I substituted one more dropper of cannabis in the evening. Not as good as the anti-depressant until I adjusted some dosages.

The future:..................... learn everything I can. Alter what I can, accept what I can't.
Knowledge is Power. Share your neuropathy journey to help others on Connect.

What would I tell my best friend if she was diagnosed with SFN?
Join Mayo Connect..... participate, contribute, question or just use it for research........then you won't be saying, "if I had only known."

May you be safe and protected.
Chris

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Chris I agree with you absolutely. Connect is a most wonderful tool for those dealing with or simply trying to understand PN. The great thing is that it is so well organized and it is fairly easy to search around for things. OK, so in reading your saga it sounds like (correct me if I missed it) there is no one known precursor to your developing neuropathy? Strange how so many people do not know what caused it for them. I suppose for some it might be hereditary. I am glad you are finding help from THC. Hank

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@jesfactsmon You nailed it Hank...I agree that my body has lost track of which way is up and I love how you summed it up. Thanks so much for being genuine. I admire you and your wife's caring ways and tenacity as well. After last year and the beginning of this year...all I could think was there is something bigger. So, for me perhaps Central Sensitization or CRPS comes in to play. I'm spent quite honestly and looking to Mayo for clarity and an overall plan as to how to live best with what I've got.

I was a perfectly healthy girl/woman, although I always considered myself a "delicate flower" (family joke) and just rolled with the little things like mild scoliosis, car sickness, intolerance to cold and wind and light, poor eye sight. Always got headaches easily but tolerable and never sat still for 2 seconds. I was an overachiever and a tad bit of a perfectionist but, it worked. Then I turned 40 and was diagnosed with a hereditary corneal disease. I held on to my eyes deteriorating until 43 then was severely losing visual ability, having extreme light sensitivity and waking up cloudy. Scary stuff. I had no choice but to have double cornea transplants and cataract surgeries over a 4 month span. I'm a die hard and maybe just plain stupid but in my normal fashion, I put things that mattered to me like watching my kids play sports first and second was my job. I preached "Go hard or go home" to my kids so I tried to lead by example and do the same. I banged out those surgeries with one complication and got to those games and work, in sunglasses and hats and sat in dark corners. Turned off overhead lights at work and closed blinds. Blinged out my cataract glasses (always must look cool) and I miserably and never quite comfortably, got the job done. Never did I miss!

And that is when my health/ life took a turn and became one obstacle after another. I just always wanted my kids to be proud of me the way I was of them. They were and still are my main source of motivation. As I go to Mayo Clinic, I hope for clarity of my health conditions, my personal being and the hope for betterment because I want to be a participating grandma one day to the best of my ability! It kills me to know I've lost so much. There is a lot of denial still.

My legs....well, I can walk minimally given the day. My gait and balance are fine, thankfully. However, my legs no longer have strength or endurance to walk repeatedly or stand long. I may wake with my calves blown out for no reason whatsoever. Meaning they are very tender and painful with pressure like someone took a bat to them. I can enduce them by over doing (which means too much normal walking or standing in my house) or have absolutley no control over them. Feels like I've run a marathon when I've barely walked. Presently, I'm sitting with them wrapped in heat and they're achy, tender and painful. Today, I'm done for the day. That's why I'm house bound bc its not worth the price I pay. Wheelchair is a must for distance....hospitals, stores. airports.

I guess Im a great example of what came first the chicken or the egg??? B12 deficiency claims to be the cause of neuropathy but so much before that, it baffles me. Who knows when neuropathy really began setting in???

I'm sad about Linda's chemo and what I call her "souvenir"...left over neuropathy from a cancer treatment. How very wrong in my mind that a cancer survivor is left with such misery. It breaks my heart and makes me mad, honestly. Linda, jump on the courage train with me and many others that are being tested but, refuse to lose. C'mon...go hard or go home! At least we have each other.
Best wishes to you both.
Rachel

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@rwinney

As if my story wasn't long enough...I wish to add, for anyone who may be in early stages of neuropathy troubleshooting.

I had a negative EMG/Nerve Conduction Study in 2017 and not diagnosed with SFN until 2019. As I learned that Small Fiber Neuropathy is NOT shown in this test, only Large Fiber Neuropathy, I wondered why noone thought to line me up with a skin biopsy earlier to rule out SFN, given my symptoms of nerve dysfunction and not proving Large Fiber through the test.

In retrospect, I do understand that SFN is still very unknown and misunderstood. I will take some of the blame (it's not all on Drs) for not pushing and learning enough during that time. Such foreign territory, especially when you are overwhelmed by pain.

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@rwinney Hi, Rachel. My neuro doc did not want to bother me with a small fiber test, because he said the treatment would be the same, whether I had a diagnosis or not. He said some people are not nuts about getting the little samples taken from their skin. It hurts, I guess. I insisted on the test, and my test for small fiber did not come out positive. Only my large fiber did. Who knows. There is no good treatment for this goofy, painful illness, anyway.....Love you, Rachel, and thanks for the sweet compliments to me. Yes, maybe check out CRPS when you go to Mayo. Have you done any mirror imaging techniques? Why I ask, is that they are done successfully, sometimes for CRPS. Always thinking. Sometimes I wish I could just stop already, and just drink a damn beer...… Love, Lori

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@rwinney

It has been a 4 year journey filled with troubleshooting and misfires before landing on my new normal of Small Fiber Polyneuropathy. I joined Mayo Connect 1year ago because I was lost and needed support of others who understand my doubts, fears and were experiencing similar diagnosis.

My downfall began August of 2016 (age 46). I had unusual neck and head pain from painting. My PCP sent me to physical therapy, no relief after 1 month. On to acupuncture for 2 months, nothing. Xrays were of no value. Jan 2017 my MRI revealed 1 moderate cervical herniated disc and 2 bulging discs. Ah hah, the answer! Wrong. 2 spine surgeons agreed surgery was not the answer and sent me to Pain Management. I was diagnosed with occipital neuralgia and cervical spondylosis. I worked with 2 different Drs because the first PM Dr. could only provide help to my neck while my head needed help too. This resulted in a total of 4 cervical and occipital nerve blocks as diagnostic tests (these are preliminary to Radio Frequency Ablations). From that point, July 2017 through January 2019 I received 10 Radio Frequency Ablations on my neck and head. Burning off the nerves provided initial relief but, eventually petered out. I so badly wanted to be cured and get back to work. I kept receiving these intrusive procedures and they became physically harder to take.
I developed Neuritis which felt like fire works in my neck and my shoulders now were becoming decrepit. I lost ability to use my arms and shoulders properly. I believe (and so does my neurologist) that these ablations were having repercussions on my body and causing nerve damage. I was prescribed short term Gabapentin eventually followed by Lyrica and a few round and rounds between the 2 drugs due to insurance coverage.

During this time, headaches and severe migraines were playing a role but again, my head pain was more than migraine. Occipital neuralgia supposedly. After 2 neurologists,…chronic migraine was diagnosed and I began botox injections every 3 months. I felt like a HUMAN PINCUSHION for 2 years straight between 40 botox needles at a time to the head plus all those God awful needle entries to my head and neck from RFA's I then began the newly introduced migraine monthly self injections of Aimovig followed by Emgality and now Ajovy (they lose effectiveness for me after 8 months or so).

During these times, stranger things began throughout my body. Back and hip pain had begun developing. Toe and foot pain, along with hand pain. These pains all lead me to Orthopedic Drs. who x-rayed and said nothing's wrong, I must have sprained something. I wore a boot for the foot I couldn't walk on, a hand brace (from weeding too much – what? who gets a weeding injury). I had an MRI of my back…it showed a mild disc protrusion. Yeah, so what. Just like my neck, nothing major to be effecting me this way. I received epidurals in my back and started PT again. The common theme began to reveal that nothing majorly, structurally, was wrong with me. I felt too young to be falling apart to all these unexplained, tormenting pains. I myself, decided to go to a Rheumatologist to rule out fibromyalgia. The Dr said I have mirroring symptoms but, not fibro and suggested my Lyrica dose be increased.

January 2019, I had just had my final rounds of ablations and my pain was exacerbated from them, more than ever. In retrospect I believe I made a big mistake having too many and pushing for the reason of getting my life and job back. It backfired on me. The Fall prior began oddities in my body such as tingling in my hands. Pins and needles all over. My body was not neurologically right. In addition, I was exhausted, having palpitations and shortness of breath. These symptoms slowly grew and took over my body. I managed miserably to get through the holidays then went to my Neurologist in January. I explained through tears and frustration that something was wrong neurologically and if he couldn't figure it out I was going Mayo Clinic. It was finally then that he tested me via skin punch biopsy and diagnosed me with Small Fiber Polyneuropathy. Ahhh hahhhhhh, finally! I was not going crazy, it was not all in my head, there was a name for this chaos in my body.

And so it began…a thorough and extensive workup to find an underlying cause. A plethora of blood work and genetic testing. I had already had MRI's on my brain, neck and back. I had bloodwork drawn prior for SED rates when I was trouble shooting but, this testing lasted for 2 months. Immediately landed on a B12 deficiency. I began B12 injections every other week for months until my level regulated. I slowly had more energy and could breath better without my heart racing.

Now, we work on regulating and controlling nerve damage and pain . My neurologist says maybe 2 -3 years nerves will regenerate. It's a crap shoot. I stick with Lyrica, tried Cymbalta for over a year then weaned myself off because I had memory issues. Throughout my pain journey, I began taking Nucynta until my new insurance wouldn't cover it. I moved to Norco (hydrocodone) and added medical marijuana for when hydrocodone is not enough.

My body was increasingly feeling sunburned, pins and needles, electric shocks in my head and face, sharp unexpected pains throughout, burning and weakness. By spring of 2019, my legs started to die and walking became restricted. This was and still is my biggest fear. At the same time, with my body in a state of flux, I developed Chilblains on my feet with tenacious itching, red painful sores and my feet were flaring between red hot and blue, purple, grey colors. My neurologist claims it was from neuropathy. This bout brought me to a dermatologist, vascular and cardiologist for ample testing (echocardiogram, CT scans) and ruling out any other misfires. After this episode settled, my Neurologist suggestion lidocaine infusions to control pain. I sat for 5-6 hours in the apherisis unit of my local hospital every Monday for 5 months. Lidocaine is a slow drip infusion that increases dose based on body weight. I was "in it to win it" (similar to my radio frequency ablations) but, it was a failed experiment for me and offered minimal relief. Others receive benefit.

I also had a spinal tap to rule out autoimmune diseases. I do not have any, thank goodness. However, the spinal tap left me with a ferocious spinal headache which landed me in urgent care followed by the ER and needed a cocktail to stop the pain. Never in my life have I experienced something so painful. This all lead me to seek the help of a chronic pain psychology for 2 months. I needed help but found she wasn't the one to help. I got nothing from her. I am fortunate to depend on family and friends and Mayo Connect for my mental health support.

My suggestion to anyone with peripheral neuropathy or symptoms….please do your research and gain knowledge about your body. Be your our advocate. I learned the hard way that we're kind of on our own out here. Drs can only take you so far and dont have the time to care as we want them to. It's very important to find a good PCP (primary care physician) and establish a relationship. They will lead and direct to the best of their abilities. My PCP is wonderful! He is my hydrocodone prescriber. He recommended medical marijuana for my comfort. He wrote my disability letter and qualified me for long term disability both through my job and Social Security. I know he's got my back. I also take a supplement protocol, try to eat healthier, and keep active as best I can and practice mindfulness, breathing techniques and meditation. I also benefit from weekly myofacial release therapy. In June I will attend Mayo's Pain Rehabilitation Program for 3 weeks

Living with peripheral neuropathy in a constant battle. A 24/7 job. It takes mental strength and tenacity to not be defeated by it. It takes a village, if you will, to have all hands on deck, by way of medicine, mental health, holistic approaches etc… I say I still work but, no longer get paid. I'm sorry for the length of my story but, it was therapeutic for me and I thank you for reading it. I'm happy to help further should anyone need.

Be well-
Rachel

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Dear Rachel, my heart is breaking to hear all you've been through. I have a similiar story in that I have so many afflictions besides neuropathy. Neuropathy tries to destroy my life. The symptoms are so many. I fight for my sanity and crawal out of my skin. Ug. The Gabapentin and Lyrica have horrible side-effects but am now back on Gabapentin. It helps me not jump! Thankfully I'm a woman of faith and my God is so present and gets me through. His peace through Christ. I know this life is only temporary and I will get a new body some day!!! In the midst of all my diseases and unrelenting, often intolerable pain, I have joy and hope and assurance. I find I have to ask close people to adjust their expectation of me. I hate doing that. No one understands this pain. I00% of the time I tell people when they ask how I am, that these are facts not complaints. I will pray for you when my failing memory allows! Many blessings and warm regards, Sunnyflower

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@sunnyflower

Dear Rachel, my heart is breaking to hear all you've been through. I have a similiar story in that I have so many afflictions besides neuropathy. Neuropathy tries to destroy my life. The symptoms are so many. I fight for my sanity and crawal out of my skin. Ug. The Gabapentin and Lyrica have horrible side-effects but am now back on Gabapentin. It helps me not jump! Thankfully I'm a woman of faith and my God is so present and gets me through. His peace through Christ. I know this life is only temporary and I will get a new body some day!!! In the midst of all my diseases and unrelenting, often intolerable pain, I have joy and hope and assurance. I find I have to ask close people to adjust their expectation of me. I hate doing that. No one understands this pain. I00% of the time I tell people when they ask how I am, that these are facts not complaints. I will pray for you when my failing memory allows! Many blessings and warm regards, Sunnyflower

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@sunnyflower Neuropathy is often an invisible disease. I suppose some people's thoughts aren't very kind when they see me park in a handicap spot, and see me walk into a store with no cane or limping or whatever. They just don't know how much every step hurts, and as a rule, handicap spaces are closest to the door, saving me a few steps. Mental illness is another invisible one, mostly. People like my service dog, and sometimes will ask me what her service is. Usually, telling them that she's a psychiatric service is enough information, but sometimes people have a lot of questions because either they need a dog, or someone in their family needs one. I try to be polite, and hopefully make any interaction a learning experience. I've had only a few negative encounters with people who don't believe me, or don't believe that a psychiatric service dog isn't a real service - it should only be a companion dog or whatever. I carry a card with the ADA information to show if necessary.

Jim

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@jesfactsmon

Chris I agree with you absolutely. Connect is a most wonderful tool for those dealing with or simply trying to understand PN. The great thing is that it is so well organized and it is fairly easy to search around for things. OK, so in reading your saga it sounds like (correct me if I missed it) there is no one known precursor to your developing neuropathy? Strange how so many people do not know what caused it for them. I suppose for some it might be hereditary. I am glad you are finding help from THC. Hank

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Good evening @jesfactsmon, So.....you know, I am sure, that the greatest precursors for neuropathy are diabetes and chemotherapy. Everything else is labeled "idiopathic" and that is the category where I ended up. Knowing very little about nerves except how much pain their lack of functioning can cause, I started thinking about all of the injuries to my body from the time I was about twelve and had a severe break in my ankle from twirling too fast on roller skates. There have been 13 other surgical repairs to my body from falling off horses, diving too shallow, falling over a sprinkler with a crash, and including the last fall down the mountain which then introduced me to cervical fusions. I just gotta believe that somehow we pay a price with structural injuries. No matter how hard the clinicians try it is just not possible to repair to be just as good as you were before. And then along comes aging, with all the aches and pains.

And there you have it.....lifestyle choices that are riskily undertaken by someone with less skill than what is required to stay all in one piece. That's my story and I have to stick to it to explain all of the neuropathy symptoms that I now tackle with patience and perseverance.

May you be healthy and content.
Chris

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@artscaping

Good evening @jesfactsmon, So.....you know, I am sure, that the greatest precursors for neuropathy are diabetes and chemotherapy. Everything else is labeled "idiopathic" and that is the category where I ended up. Knowing very little about nerves except how much pain their lack of functioning can cause, I started thinking about all of the injuries to my body from the time I was about twelve and had a severe break in my ankle from twirling too fast on roller skates. There have been 13 other surgical repairs to my body from falling off horses, diving too shallow, falling over a sprinkler with a crash, and including the last fall down the mountain which then introduced me to cervical fusions. I just gotta believe that somehow we pay a price with structural injuries. No matter how hard the clinicians try it is just not possible to repair to be just as good as you were before. And then along comes aging, with all the aches and pains.

And there you have it.....lifestyle choices that are riskily undertaken by someone with less skill than what is required to stay all in one piece. That's my story and I have to stick to it to explain all of the neuropathy symptoms that I now tackle with patience and perseverance.

May you be healthy and content.
Chris

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Chris @artscaping until I began reading people's stories on Connect I was not that aware of the fact that PN could arise as an aftermath of injury/surgery, but I now know that it clearly can. How unusual for someone other than a combat soldier or a commercial fisherman to have had so many injuries in their life. Sounds like you have paid a price for having had what sounds like an adventurous life. On second thought, remembering back to our experience with Linda's chemo, that felt like an adventure as well, a nightmarish one. Best, Hank

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@sunnyflower

Dear Rachel, my heart is breaking to hear all you've been through. I have a similiar story in that I have so many afflictions besides neuropathy. Neuropathy tries to destroy my life. The symptoms are so many. I fight for my sanity and crawal out of my skin. Ug. The Gabapentin and Lyrica have horrible side-effects but am now back on Gabapentin. It helps me not jump! Thankfully I'm a woman of faith and my God is so present and gets me through. His peace through Christ. I know this life is only temporary and I will get a new body some day!!! In the midst of all my diseases and unrelenting, often intolerable pain, I have joy and hope and assurance. I find I have to ask close people to adjust their expectation of me. I hate doing that. No one understands this pain. I00% of the time I tell people when they ask how I am, that these are facts not complaints. I will pray for you when my failing memory allows! Many blessings and warm regards, Sunnyflower

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@sunnyflower if you wanted to post a more complete picture of your illness you have an interested audience here on Connect. You mention "so many afflictions" as well as "no one understands this pain". On Connect I think you actually have found a place where many people might be able to understand what you mean. You also mention your memory failing. Many of us have memory issues due to aging but in your case is this another symptom of your illness? Just want you to know that, at least in my short time on Connect, I have found some pretty sympathetic and understanding individuals. My wife has peripheral neuropathy and lives in pretty much constant pain. We have learned a lot of info that has helped her by participating in online forums such as this, but I think Connect is a particularly good one, at least for our purposes. So feel free to unburden yourself if it helps. I am so glad you can find solace in your faith. I too rely on that as my rock, as does my wife. That can hold one together like nothing else. Best, Hank

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@lorirenee1

@rwinney Hi, Rachel. My neuro doc did not want to bother me with a small fiber test, because he said the treatment would be the same, whether I had a diagnosis or not. He said some people are not nuts about getting the little samples taken from their skin. It hurts, I guess. I insisted on the test, and my test for small fiber did not come out positive. Only my large fiber did. Who knows. There is no good treatment for this goofy, painful illness, anyway.....Love you, Rachel, and thanks for the sweet compliments to me. Yes, maybe check out CRPS when you go to Mayo. Have you done any mirror imaging techniques? Why I ask, is that they are done successfully, sometimes for CRPS. Always thinking. Sometimes I wish I could just stop already, and just drink a damn beer...… Love, Lori

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I'm just learning about the mirror techniques and am ordering the books (volume 1 and 2) that Barry recommends. A work in progress!

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@rwinney

I'm just learning about the mirror techniques and am ordering the books (volume 1 and 2) that Barry recommends. A work in progress!

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Hi Rachel, Basically, it sounds like mirroring must be only when you have 2 appendages, 1 not being in pain. You put the good appendage in a mirror, and stare at it, and say how healthy it is, how wonderful it is, how perfect it is, and the brain thinks it is the "bad" appendage that is good. A brain trick. Smoke and Mirrors. It is done for Phantom pain, as well. Oy, it gets so crazy. Like a magic trick! But whatever works, works. Good luck, Ms. Rachel!!! Lori

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