Where Is My Relief?

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Waking up in pain everyday isn’t how I envisioned my life to be. Diagnosed 18 years ago and been living debilitating pain that no one could possibly handle on their own. Prescribed medicine’s do not work for my good. They just caused more problems, more pain.

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Waking up in pain is not what I envisioned my married life would be. I hurt because I can’t be the wife that my hubby Karl needs. Instead of me taking care of him, he instead takes care of me. Causing an extra burden to be placed on his shoulders because of my stupid illness hurts my heart. Watching him age before my eyes. Saddening. Hurtful. Regretful. Sorrowful. In his eyes he loves me and I am thankful. Karl honors our vows to each other. Honestly, that speaks volumes to his character. Cares for me like no other. He is a blessed man of The Most High that was created just for me. I am blessed because he chose me. Selah

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Waking up in pain each day is not what I envisioned my life as a parent to be. Diagnosed when my children were 12, 9 and 2 months respectively. Just babies themselves having to take on the role of caretaker to their own mother. Missing out on a lot because of me. Having one resent me because of it. Missing out on caring for the baby a lot because of the pain. They are 30 (KJ), 27 (Ka’miko Mai’) and 18 (Kimora-Lynn) now and I can truly say I am blessed that they chose me as mom from heaven. They make me fight each day to live. Even with the pain, I could not have made it this far without them. There are many others in my shoes that do not have the support system that I have and I pray for them everyday. But I am so thankful that my family loves me and stays in my corner. The Most High seen favor with me and blessed me with another daughter. My daughter Hadar, KJs wife, not only loves me but she is also an active advocate for me and Sarcoidosis. She helps me with my health choices and also with my life. She educates others about Sarcoidosis, making them understand what I struggle with everyday. She loves me and that is such a blessing.

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Chronic pain, living with Sarcoidosis, living with an Invisible illness, living with an incurable debilitating disease and finally, living with a rare disease; this is my life. I fight through the pain, I smile through the pain, I live through the pain.

Peace and blessings to you always Warrior’s.

 

The Fibromyalgia Letter

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The Fibromyalgia Letter

Hello Family, Friends, and Everyone Else!

How do I explain this to you my family and friends? This is very difficult to do as my illness is “unseen.” So allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated

I want to talk to you about fibromyalgia (FM). Many have never heard of this condition and for those who have, many are misinformed. And because of this, judgements are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM has assaulted not only my life but those whom I love as well.

I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain this disorder inflicts.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….

You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don’t have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it “sending in the troops.” Anytime I do not seem in touch with reality.

Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same “wrong” decisions over and over again. Why haven’t I learned by this time? Why can’t I see the senselessness of my behavior? I may seem to be getting my life together and them bottom out all over again.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. I have been accused of “playing games” for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flair. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.

{{{While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses}}}

This is why I feel like a child at times. Just the other day I put the egg’s I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the Demon assaults me at every turn. I have a physical illness and it isn’t my fault and I didn’t ask for it I don’t want it and I don’t deserve it.

{{{Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.}}}

Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-Fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.

On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

All I ask is that you become educated about fibromyalgia. I am someone in your life that suffers from fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.

{{{Lend a helping hand. If you want to be helpful to someone with fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don’t take things personally. Some people with fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.}}}

So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.

Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.

So I Need You To Please Understand Me.~Author unknown

Note: I didn’t write this letter and I’m not sure who the original author is.
Posted by Lana ~ Fibro and Chronic Pain Support
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Rethinking the Traditional Pain Scale

I agree with you. Pain is pain for me and when I come to you for help, please don’t upset me more by trying to categorize what I am feeling.

The Professional Patient

Rethinking the Traditional Pain Scale

I have mixed feelings about some of the proposed methods for communicating about pain, but I’m glad the traditional pain scale is being rethought. I would prefer a scale with one or two sentences per pain level, to make sure patient and doctor are speaking the same language. See my earlier post on that topic.

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Feeling melancholy…

Lately I have been missing my sisters a lot. Crying uncontrollably until I have to use my inhaler to breathe.  My daughter’s try to calm me down, but they know that their aunties meant a lot to me.

Missing my ability to pick up the phone to call my sister’s Leah, Zipporah and Dinah so much that my heart hurts. People don’t understand that Dinah and I were each others support system while facing life with a debilitating illnesses.

Although I miss them all dearly, I miss them for different reasons. My sister Leah was like my second mother. She kept all of us in check. Leah was there whenever, wherever you needed her. I remember her visits to my homes both in New Jersey and here in Delaware. We always had so much fun. When I was diagnosed with Sarcoidosis, I believe she took it the hardest. She is responsible for me meeting my husband and she reminded me of that event all the time. She adopted a lot of my husbands peers as little brothers and would provide them with a home cooked meal at least once a week. For them, she along with my parents, meant the world.  They would drive up from South Jersey or wherever they were to visit my mom and Leah.  Leah, Dinah and Zipporah were all creative and could build or fix whatever they set their hands. Zipporah was our beauty queen, just like her daughter’s are today.  She left us first in 1993.  That took a toll on my whole family.  Most of all, that is when I noticed changes in my health.  I started school to become an R.N. after her passing because I wanted the knowledge and ability to make sure that nobody left us like that again.  My funniest memory of her was during the birth of her daughter Kamiah.  Zipporah made sure that her hair was in place, her makeup was intact and the birthing process was Oscar worthy. ^~^ Now Dinah was our go to sister. Wise beyond her years in life lessons, music and education. She was the one responsible for all of our childrens understanding about the importance of getting a great education. Dinah was their first teacher even without earning a degree herself. I give her all the credit for my son KJ being able to speak, read and write before he turned three. He was accepted to a mentally gifted school at the age of three to start kindergarten at four. KJ surprised the top educators in New Jersey by being able to read at a fifth grade level at three.  She is also one of his role models for his vast knowledge of music. Dinah was also our comedian. We always said that she missed her calling.  She could do impersonations and do card tricks.  She kept us laughing til we were in tears. Can you see why I miss them?

Now I feel lonely because they are gone. There are days I forget and pick up the phone to call them only to remember that they aren’t here anymore. My sister’s Tammie and Judy, and my brother Joel are my hearts and they are all I have now.  Karl Sr., KJ, Ka’miko, Kimora-Lynn and Hadar, don’t think I discount your love.  Please God, I pray for their continued life, health and strength. I can’t lose anybody else.

Pictures of my battle with Sarcoidosis of my Eyes and Sinus

These photos were taken before and after the completion of surgeries on my sinus and both eyes. You can see the large granuloma masses above each eyes and there was also a large mass below the right eye. The operation was done while I was sedated but alert. My Ophthalmologist and I laughed and talked during the whole surgery. The surgery to my sinuses was done three days prior. You see cotton in my right ear due to pain. The third procedure performed by my Otolaryngologist was better than the first two. What you cannot see is the drainage tubes that are stitched within each nostril. Having to use 24 hr. oxygen support is difficult during this time. Had to sleep in a sitting position until they were removed.

These surgeries were performed in 2006.

Lynn's eyes before surgery (3)

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