Yes, I mean you! I see you struggling, I know your pain. You think no one could ever know what it takes to get you through the day, what it takes for you to even get out of bed. I know your struggle, I know your pain. It’s real. You are not alone.
How do I know? Well, I am you. We are one and the same. I know of the pain that drags you into the deepest recesses of hell and makes you question if life is really worth all this. I am the young man who sits next to you in the doctors office praying this one will help him when so many have ignored his symptoms. I am the mother in the scooter trying to shop with two children in tow. I am the teenager who can’t get the energy to go be with friends because her doctors will not believe her because she’s to young to feel like this. I am the individual who sits in the dark with a gun in hand saying enough. I AM YOU!
How did I see past the mask? I have worn the fake smiles. Laughed and joked when all I really wanted was to curl up and die. I have said “I Am Fine.” more times than I can count. I have pushed myself past my breaking point to be and do what others think I should do. I know all the lines and all the ways to cheat and hide how I really am on the inside.
Daily you wonder if this life is worth all this pain. You wonder if you will ever feel normal again. You wonder if you will ever find someone who will love you with all your issues. You wonder if this is what will kill you. You wonder when the doctors will figure out how to fix you. You wonder if anyone hears your cry for help.
I hear you! I am you! Life right now maybe shit; but it can and will hold beauty again. Someday you will find the one person that gives you hope and love. They will give you a reason to live. They will hear your cries and wipe your tears. They will stand up to the doctors and not let them throw you away as if you were nothing. They will bring unimaginable beauty to each day.
Who is this person and where can you find them? Get up and walk into your bathroom. Stand facing your sink. What do you see? You are who you’ve been looking for this whole time. You are your own saviour! You are a kick ass warrior! You have the strength, heart, compassion, and grit to face anything. You will keep walking forward even as this disease weighs you down. Each day will provide the chance that answers will come.
Why am I talking to you? Well, the answer is simple. Even the strongest warrior needs a shoulder to lean on from time to time. We need other warriors to help us along the way. Some will make you laugh when you need it. Some will kick you in the ass to get you to do the things you know you should. Some will come along and give you hope just when you have none. And yet others will come along and cheer you on in your accomplishments. They will become your family, your tribe.
The bottom line is this: you are not alone. You never have been. We have been here for you the whole time. You see us now because you are us and we are you. You reached out and grasped the warrior in you. Stand tall, stand proud! You are a spoonie warrior!!! You have a never say die flame that burns inside. Yes, you have bad days. Yes, you will scream, cry and shout “Why me?”. In the end you will pick yourself up ,with the help of friends, family, and fellow warriors, dust yourself off and face another battle with courage and a fierce will to live pain free.
Just remember…I know you! You are me. You are one bad ass, never say die, strong, courageous, ass kicking, beautiful mess, spoonie warrior! And I love you!
Written by a fellow Spoonie named, Linda C.
Thank YOU Linda for writing this. I absolutely love this!
I hope you not only read Nicole’s Journey but are able to help her by donating. Here is her story in her words…
……Not only did my life take a drastic turn about 3-4 yrs ago but so did my family’s. I was diagnosed with a very rare condition called Tarlov Cyst Disease. Tarlov cyst disease effects 5-9% of the general population (less then 200,000 Americans) and is more prevalent in women then men. Tarlov cyst are a nerve root cyst and as the cyst grow they compress the nerves inside the cyst as well as the nerves around the cyst.
Symptoms of the Tarlov cyst:
– pain in the lower back, buttocks, legs, and feet
– weakness/cramping in legs and feet or arms and hands
– parasthesias in legs and feet or arms and hands
– pain in sitting or standing for any amount of time
– pain when sneezing and coughing
– inability to empty bladder (extreme cases inability to urinate at all)
– swelling in the sacral area
– pain and pressure over the sacrum and coccyx (tailbone) extending across the hips and into the thighs.
– vaginal, rectal, pelvic, and abdominal pain
– headaches/migraines due to the changes in spinal fluid along with blurred vision
– dizziness and a loss of balance
Being outdoors was the one thing my family all enjoyed, hiking, adventure walks (my daughter it was endometriosis and there wasn’t much they could do about it. It seemed like with each passing year came a new symptom. Doctor after doctor just passed me off as nothing was wrong or it was all in my head, I was even told by one doctor I was a hypochondriac. I was given so many different medications to try but they just seem to make things worse or have horrible side effects. I was told I needed to loose weight and everything would stop so I lost almost 150lbs but was still not symptom free. It was the summer of 2011 that I lost all bladder function and I had to start self-cathing. I was devastated, who at 28 yrs old looses the ability to go to the bathroom?!?!? I was subjected to test after test, multiple MRI’s and CT scans and still everything came back negative nobody knew what happened. So this too was another symptom that I just learned to live with. The symptoms got a lot worse early June 2013, I woke up and my left leg was numb (the feeling you get when your foot falls asleep times 100). Because of yrs of being like this my left leg weakness has caused my foot to begin to drag and I have lost all reflexes. Not only has this debilitating disease ruined my quality of life but it has taken so much from my family. We no longer are able to hike or take our adventure walks because the weakness in my leg has caused my foot to drag. Bike riding is completely out of the question because siting for any amount of time is very painful and causes a lot sciatica problems. I would love to be able to get back to our old life. All these tests have not only taken the small amount savings we had but have racked up a stack of medical bills. Currently my husbands income is our only income. We have located 1 of 5 specialists who is able to elevate the pressure on the nerves with amazing results. Dr. Feigenbaum is located in Dallas, TX. He is covered on my insurance plan and I do not require a referral to see him. I have finally gotten an appointment scheduled for October 15th with Dr. Feigenbaum. Then I will need to get my surgery scheduled and the funds raised for surgery. After surgery is done I will be required to stay in Dallas for 2-3 weeks post op before being released to come home.
These are the different stages of a tarlov. The circles are a sliced view of a nerve and the cyst is the growth growing off of the nerve
The white mass at the bottom of the spine is a large tarlov unfortunately I do not have the measurements
……………………………..This is a letter that I had written to my family and my close friends in regards to what I live with every day. I have lost almost all of my friends and alot of family since being diagnosed. It has definitely been trying.
I am writing you this letter in hopes of improving your understanding of
those who live with symptomatic Tarlov cysts and the chronic pain, the nerve
damage, and life altering changes the disease causes. Having the multiple cysts on my spinal nerve roots that has resulted in sever nerve damage causes chronic pain and many other issues in my life (a lot of them invisible). Most people do not understand a lot about the relentless, intractable pain and its effects. Most people are misinformed and uneducated on this rare condition that effects less then 200,000 of the worlds population. In the spirit of informing those who are the most important to me and the ones that I hold closest to my heart these are
the things that I would like you to understand about me and my medical
diagnosis, Tarlov cysts disease.
Please understand that living with this medical condition doesn’t mean that I am not still trying to live a “normal” life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don’t seem like much fun to be with, but I’m still me…….. just sometimes stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I try to focus on what I CAN do, and not what I can’t!
I worry about how the changes in me are affecting my kids, my friends and my family. I care very much about each and every one of you, and I’d still love to talk to you, hear about your life, about the family, and how everything is going. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do, my faith in God, and the blessing of your support, love and friendship. Please understand the difference between “happy” and “healthy”. When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I’ve been living with this diagnosis and its symptoms 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. It doesn’t mean that I’m not in pain, or not extremely fatigued, or that I’m “getting better”. Please don’t say, “Oh, you’re sounding good!” or “But, you look so good”, as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery. Please understand that being able to sit, stand , walk, or be sociable for 15 minutes doesn’t necessarily mean that I can sit, stand , walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand , walk for thirty minutes at a time yesterday doesn’t mean that I can do the same today. With this medical condition, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style. It has been quite frustrating and is quite a learning experience. I am still learning more about my condition and still learning more ways to learn live and cope with it on a daily basis.
Please understand that chronic pain is variable. It’s quite possible that one day I am able to take a walk, go out to lunch with you, go shopping, or to church, although when I get home or the next day I’ll have trouble walking to the next room. Please don’t be confused by saying or thinking, “But, you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do. Please understand that “getting out and doing things” does not always or necessarily make me feel better, and can often make my symptoms worse. I cherish the times I can be more sociable and active. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don’t you know that I would? You know me and know how my life was before these Tarlov cysts and resulting symptoms began and have continued. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I
pay for it dearly .You can’t always read the pain on my face or in my body
language. The pain is not caused by depression. The sadness and sometimes
irritability that you might hear in my voice (even though I try hard to hide
and it is due to the changes such as the loss of my job, my inability to
jump in the car whenever I want to run errands, see a movie, visit friends, shop, clean my house, work out, go for a walk or hike etc. as I did previously. Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can’t be put off or forgotten just because I’m somewhere else, or am in the middle of doing something. I have had to lie down in the floor in my doctor’s office when I had to wait too long, and could no longer sit or stand. Chronic pain does not forgive, nor does it wait for anyone. You may have wondered why I don’t just take something stronger for the pain. I have tried many different medications, and unfortunately a lot of side effects. I also had surgery which did not result in significant improvement for me, although it has for many patients. I have developed many more cysts since my surgery in cervical, thoracic, lumbar and sacral spine areas. These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there are only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are indicating a higher percentage of improvement and many patients are much improved. If I seem irritable or distant occasionally, it ¡s probably because I am experiencing an increase in my symptoms. It’s not how I try to be. As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am, though changed from the way you knew me before TCs. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, and cleaning. You know me well enough to know it is very difficult for me to ask for help. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of “understanding” from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. One of my most heartbreaking things is to have my kids help me every time I end up on the floor after falling. In recent months my left leg weakness has caused my foot to drag and when I am tired it gets really bad and I have a tendency to fall. I am starting to lose some of the sensation in my fingers in my left hand but on the bright side at least I am right handed. These may seem like little things, but it is sometimes those little things that make you aware of the changes this disease has caused. Thank you for trying to understand what I do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this disease has blessed me in many ways. I have met many new people, learned a lot about myself and find myself surrounded by God’s blessings in my life each and every day.
My name is Candace, I’m 17 and this is my story.
I was born in Paradise, California to a 19 year old single mom I have never met my biological father still to this day. My dad now has been the only dad I’ve know since I was 3. Growing up wasn’t the best we didn’t really have a lot of money, my dad was an alcoholic until I was 7 and the only reason he quit drinking was cause my mom got pregnant. He was abusive, verbally, meantally and physically I watched him hit my mom as a little girl then as I got older me. He called me every name you can think of, stupid, retarded, fat, cuss words etc. I was never good enough for anyone. My family constantly told me I needed to lose weight, I was bullied until high school constantly told I’d be prettier if I was skinny. But the thing is I was happy with myself. I was put on the back buner when my little sister was born it seemed than everyone forgot about Candace it was all about Josie no one came to see me. In middle school is when it started. Thinking about suicide and such but I never thought it was something to be concerned about I was like 12 so it wasn’t a big deal to me. My way of hiding the way I felt was to say how much I hated it and how stupid it was. There were nights when I’d sit and ask why I was alive I’d cry to god and tell him to take me away take the pain away, I didn’t want to be called names everyday and get told how worthless I am anymore. I was saved at a young age and knew in heaven there was no pain and that’s why I asked God to take me away, but he didn’t nothing got easier it got worse. My dad lost his job, we had lived in a brand new house, had nice cars I had everything I wanted then we lost it all. We moved to a two bedroom apartment we didn’t live there long as my dads unemployment ran out. We started living with people. We moved where ever was stable my mom got on welfare and she didn’t even get enough so we could pay rent. We were staying in a motel six and my dads friends parents told us about this church and we started going. God had blessed us we got a house and such but I was still not myself put on a show saying I was happy then when things were good for once they got bad again. Moving to wherever was stable again, we moved to Reno, Nevada back to Oroville, California (which is my hometown) to Yuba City, California back to Oroville. In Yuba City depression got worse, suicide was a constant thought, I had no friends, my family was broken my parents split up multiple times and got back together during these 4 years and even before then. No one seemed to notice what I was going through. I hid myself in a coat closet. I didn’t have a room but where we were staying they had a closet that I put a baby bed in and slept in for months. That’s when music became such a big part in my life I had always loved music, I sing but now it meant more to me than anything at this time. No one noticed my pain, or tears apparently I was just that good at hiding it. Then back to oroville we went again.. That’s when it got worse than I thought it could. My dad told me to go kill myself my own dad at 16 told me to kill myself and said “do you think it will affect me” and i thought that it would be easier on my parents financially to not have me around all they’d have to do is provide for my sister. So February 2014 I attempted to take pills but I couldn’t do it I don’t know why I just couldn’t. After that I had thought of myself as a failure, I’d given up on God because how could he put me through this and let me feel this way. I hated him I was so mad at him I didn’t understand. Then onto Reno, Nevada for the second time, where we lived with my moms friend. This is where I began self harming at first it was small cuts on my stomach the feeling was nothing like I’d ever felt before I was always scared to do it but when I did it for the first time it was an amazing feeling watching the blood run down it was like all my bottled up feeling were running down my skin and it was a great feeling. I continued the small cuts for a while not often just when I needed a release and to start fresh. Then in August of 2014 just after the start of senior year, I starved myself for a week no food and little water I ended up in the hospital almost had to have surgery. After that insident I began slowly fading drifting away more and more to a dark place where all I had was my thoughts telling myself I was worthless, fat, ugly no one will ever love me, if I kill myself no one will notice. I had gone about six months without self harming it was around Christmas time I did it again and it was the worst I had ever done it. Me and my mom had gotten in a fight and that night on the shower I broke my razor and started cutting my stomach and my thighs before I could put thought into I couldn’t stop myself and when I looked down the shower was covered in blood over 30 cuts cover my stomach and thigh. I told my best friend and she got mad at me then the next day at school she came and picked me up and held for 10 minutes while I cried to her. After my cuts had started healing I made the decision to tell my mom, that’s wasn’t a good idea. I had show her and she got mad at me and said it was stupid of me to do and I asked her for help and she said we needed to wait til after the holidays because if we told my dad it would ruin them. Getting told that made me feel even worse and more low as a person. Slowly over this period of time I stopped going to school. I was in pain and physically drained it hurt to get up and go to school I just couldn’t do it. At the time it didn’t seem like dropping out but that’s what I did I dropped out and let mg depression get the best of me. Finally we told my dad and it went better than I expected but it turned around and got thrown in my face just like everything else he’d always tell me to go cut when he got mad at me.. My mom told me to talk to her when I felt like cutting but I couldn’t cause she just gets mad and doesn’t understand, so either way I’d get yelled at. Then we moved we finally were stable enough to live on our own and I never cut here at our new place. Until one night I got in fight with my mom I told her to go overdose on pills and die, when I’m angry I just say things before I can think its a defense thing I try to hurt you before you hurt me. Then I cut but this time on my wrist so I wore sweater a lot which no one noticed cause I wear sweater a lot. Then this last time I cut May 12th, 2015 I cut my wrist again I just didn’t care what anyone thought anymore yep I was a suicidal self harming depressed freak and I didn’t care anymore. My parents got in a fight and for once the fight wasn’t started cause of me, but my dad drug me into it called me names and I cut like crazy carved fat into my arm and I did it slowly making sure I felt it rip across my skin. I had started going to church again then this. I was talking to a guy at the time he told me cutting was stupid and depression was stupid. Me and him started dating May 16th,2015 and I had never been so happy I was finally happy, I had God, my best friend and my boyfriend. He kept my mind off things soon I stopped going to church I spent all my time with him trying to make him happy give up my best friend, my youth group everything for him. Then July 30th,2015 he broke up with me. I was so heartbroken I loved and still love this man with everything I have. I wanted to cut so bad that day I felt like I failure, he told me I Didn’t make him happy, and my thing is I make people happy, I promised myself of I couldnt be happy I’d make as many people happy as I could, I stopped 3 people from committing suicide, always made sure ever one I talked to knew tbey had me to talk to and they weren’t alone and I didn’t do that with him. But I didn’t cut I fought the urge too there was a few time in the relationship I wanted to cut but he told me if I did he’d leave me and I loved him and didn’t want to lose him so I didn’t. I’ve been 3 months clean, back into church, closer than ever with everyone. Got re saved July 19th, 2015. God works in mysterious ways and through him I now have an amazing church family at Sierra View Baptist Church. For the first time I am at peace with everything and slowly step by step getting happier. I still have bad days its a daily struggle to not harm myself, and to get up but I have a great support system and amazing friends. Philippians 4:13 I can do all things through Christ who gives me strength. I have given it all to God and I just pray. He doesn’t give us what we want but what we need. The power of prayer is like no other. And because of everything I have gone through I now have the power to help others. Self harm is an addiction just like, alcohol and drugs. It is not stupid. I am not ashamed anymore my scars do not define me they are my battle wounds from winning. I still have a long road ahead of me but I’m taking it day by day. I have not received treatment I don’t Think medication should define my happiness I can control it. Like I said I give it all to God and I pray and I have amazing people who listen to me vent and help me through this. I also found music, reading, writing and drawing on myself where I feel like cutting works and through this I have gotten closer with my dad and my mom. They both help me.
Just onow you’re not alone, there are many people who struggle daily and go through things. I have faith that you will get through this and win your battle.
Thank you for reading my story.