Join me as Kimmyn shares her story, her life’s journey and her illness told in her own words. She shares her illness journey and talks about Fibromyalgia, Lyme, Ehlers Danlos Syndrome, Mast Cell Disease, and POTS.
Learn about Fibromyalgia http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243
Discover information on Lyme disease here https://www.cdc.gov/lyme/
What is Ehlers Danlos Syndrome http://ehlers-danlos.com/what-is-eds/
Learn about Mast Cell Disease http://my.clevelandclinic.org/health/articles/mastocytosis
Discover information on POTS http://www.dysautonomiainternational.org/page.php?ID=30
Where do I begin? This question has been the question of the year for me. Mainly pertaining to new patient doctor appointments. Each new appointment I’ve gone to I am always trying to come up with new ways to give the doctor my health history in the shortest, most thorough possible time. Recently I have been telling the nurse who takes my blood pressure and asks, “So what are you here to see the doctor for today?” Man do I dread that question, anyways I now respond with, “If you don’t mind I’d like to spare both you and I some time so would it be ok if I just tell the doctor?” Sometimes they are fine with that and others will insist on some sort of brief explanation. Either way it keeps things exciting and my world of monotony.
So for the purpose of this interview I’ll start with introducing myself. My name is Kimmyn (pronounced Kim-in), I am 36 years old and I’m a mom to Jordyn who is 17 and Ethan who is almost 13. Being a mom was who I wanted to be growing up. It has been the most fulfilling, rewarding, difficult and best thing that I’ve ever experienced. My childhood was the reason I wanted to be a mom, I wanted to be a mom to which I dreamed of having when I was a child. I had a mom and I know she did the best she could with the tools she had, but there were four basic needs that I craved and promised myself I would give my children. Acceptance, affection, believing me and in me, and encouragement. These four things would potentially play a major role in my journey. My journey I like to call “My bumpy road to chronic illness: to be continued…”.
I have been sick the majority of my life, chronic strep, chronic bronchitis, chronic sinus infections. When I was 16 living in Wyoming, (sent there for reform school), I became severely ill will mono, tonsillitis, pneumonia and bronchitis. I was in the hospital alone close to a month which in itself was hard at 16, but I also had to deal with the absence of my mom. Now, she would be in contact with the doctors and such but emotionally I had a difficult time lacking the comfort a child always desires especially when they are ill. It was during that time that I was also diagnosed with Epstein Barr virus and chronic fatigue syndrome. Eventually I returned home near to my 18th birthday and shortly after become pregnant with my daughter. I had a very difficult pregnancy and during that time my chronic pain was starting to make its debut. I dealt with aches and pains in my childhood, but actual chronic daily pain came about at this time in my life. It wasn’t until one day as I was laying on the floor complaining of pain which usually was either my feet, hips, knees or just achey all around that my mother said “I think you might have something called fibromyalgia.” Now something you should know about me, God has blessed me with the ability to find answers and to never stop until I do. My faith is what defines who I am and what has given me strength when I feel like giving up and what has become the backbone to the fighter in me. It also comforts me in my belief that I’ll one day be healed and one day use this journey to help others and give them hope through my story. I wish I could say I always sound this confident but I will be honest and tell you there are many times I lose myself in my illnesses and become angry and resentful and I want to give up. But that day my mother mentioned fibromyalgia to me I immediately immersed myself in whatever information I could find and eventually finding doctor who knew about it and who gave me my diagnosis.
In 1999 when I was first diagnosed I had not ever heard of fibromyalgia. And I remember the first time I met someone else with it I just was so shocked I wanted to know everything and anything she knew about it. I soon realized it also wasn’t really truly accepted in the medical community either. So early on I developed this shame and embarrassment about it which then turned into this secret that for the most part I would not make any mention, unless someone else happened speak of it first. It also brought about problems in my marriage, it was very hard for my ex husband who was a very factual person, believe in something he could not see or did not have a blood test to prove or X-ray to show. This would also be the case with friendships and family members, adding to my issues of acceptance. Over time I eventually became very isolated. The dreams of becoming that PTA mom I always wanted to be remained a dream. After my divorce I went down a path of self destruction for a little bit. I beat myself up that I couldn’t function physically like everyone else my age. I blamed myself for a failed marriage and for not being the mom or wife I was expected to be. I eventually through government aid was able get my own place for me and my two children. Physically I struggled to care for my children every other week. The expectations and standards demanded of me from my ex husband and my mother played emotional mind craziness. If I couldn’t perform to their standards I was reminded and I would torment myself with guilt. These expectations would be ones intended for a healthy able bodied over achieving mother. So time after time I fell short and failed. I would have to reach out to my mother who was the only one available to help with me and the kids. Asking for help was something I despised, it was indoctrinated in me that asking for help was just like saying I was a failure. So this feeling of failure was a scarlet letter I wore that read “Worst Mother Ever”. This thought process spewed over to my children. My daughter, who was my oldest, was influenced by these opinions and by my clear lack of confidence to be her mom. Forgiving myself for failing her is something I am still learning how to do. This is why I feel so compelled to share my story. It is not our place to decide whether someone is or isn’t sick by just simply judging from the outside. Chronic invisible illnesses don’t have a “look” or a “type”. What it does come with is a voice and that voice deserves to be heard. If someone you know is experiencing something similar believe them the first time, and then decide to be a support and refrain from passing judgment. If it is you personally, then stand firm and know that the ones who believe you the first time are the special ones, they are the ones who will be there no matter what. I have learned this the hard way, the majority of my battle, my journey, my life, has been spent trying to prove to everyone or anyone that I am truly sick. I felt if I didn’t perform at the level I was expected I was a failure. I would have moments of deep pain and confusion, I could not understand why my physical pain was never acknowledged, believed or taken serious only because it was unseen. By no means did I want a free pass or to be excused of being a parent. I wanted the freedom and compassion to be an imperfect parent. It’s unfortunate when you are living with a chronic invisible illness because you can not predict your good days or your bad days. The only thing I can schedule are doctors appointment, I say that in a truthful humor sort of way. I personally can’t predict how I’m feeling, at times it can fluctuate from moment to moment. Does that make it difficult to be a parent or a partner or a friend? Absolutely! That’s why I call those people who believe and stick by us special. The emotional pain of continually failing to meet someone else’s standard, often times was more painful then the physical pain. So eventually the hurt turned into anger, anger my chronic illness was used against me, anger of the lack of compassion, flexibility and understanding, ANGER FOR THE IGNORANCE OF OTHERS. I was fighting a losing battle, constantly teetering on giving up and the fighter born in me saying, “No! Do not give up, that is not who you are!” I have often asked, “Why would anyone choose this? Why would someone pretend to live a life of pain and suffering? Do any of you know me well enough to know my children are my life?” It is ironic that I have never had those questions answered. Eventually, I would fall back into the self destruction, not totally giving up but just checking out mentally from the constant conflict and chaos in my mind. Brain fog can be so debilitating at times and exhausting. I could expect following these time outs I gave myself meant, guilty comments, unwanted opinions, put downs and judgments. Which were also interpreted without fail that I was having a mental health issue. So to shut the unwanted opinions down I would try a plethora of different anti depressants, anti anxieties and whatever was recommended. Every time I was prescribed something I would try it and it would come with some sort of side effect that never justified the means. Feeling worse than I was already feeling did not make sense, so I would stop them and keep that to myself. For awhile I almost forgot about the “fibromyalgia” and took on this identity of having mental health issues. When I look back now I recognize that I not only took on the identity, but it became who I was. Inevitably those around me saw me as that person, spoke about me behind my back as if I was that person and treated me like I was a mentally ill person. It was my “excuse” for not feeling well and it supported me for times I needed help. As if a mental health problem was more socially acceptable than a chronic pain issue called fibromyalgia, what later turned out to be a symptom of a larger problem. There was frustration, anger and hurt that I couldn’t be honest about my mystery chronic pain condition. I wanted to defend myself, explain I’m not just some pill popper, I’m in legitimate pain and I can not consistently function physically the way I wanted or what was expected of me. The lack of belief and acceptance led me deeper into isolation. Through phone conversations and in person my mother would say she believed me. She would even say she had the same problems and felt the same way. But it was difficult for me to identify with her when she was a runner, she would run 2-3 miles, 2-3 times a week. I could only dream of that energy . To protect my emotional self I became a prisoner in my own body and my own mind. It never felt right that I was pitied and spoken about for something I was merely going along with because I could not be honest. I knew physically I was suffering and I would attempt to speak out and try and explain, without fail it never was truly supported.
I was taught early on that my mother and step father would never help adult children financially in any way whatsoever. So any help I received was solely for my children. Which consisted of some financial help towards extracurriculars and some for basic needs. Transportation soon became one of my larger needs for help, in 2008 I was diagnosed with a rare eye disease called Retinitis Pigmentosa. Night time driving over time has become extremely limited for me. If I needed child care for an extended amount of time or an overnight she would only take one of my children at a time.So the hoops I had to jump through were just not worth the time and energy. When I did, there were stipulations, agreements and continual reminders of when the expiration of “help” was nearing soon.
My daughter has suffered the most, all she has ever known was a sick mom. She’s my over achiever child, she’s the sunshine to my soul and the moon light when I go to sleep. I would beat myself up for missing her dance recitals or dance competitions or back to school nights. Constantly failing to meet this unattainable quota. I understand I put so much pressure on myself, constantly comparing myself to someone I was never meant to be.
If could go back in time I would allow myself room for mistakes, I would have been honest about how I felt physically and would never let someone else dictate how I felt physically, and I would believe in myself. The repeat feeling was self doubt, and failure. Whatever I did or didn’t have, or whether it had a name, should never matter. I would say support from family and friends your belief in us is half the battle. If you have that and you can focus on your health and do whatever it takes to heal your body, then half the battle is already taken care of. I think I’ve spent more of my time trying to prove to others I really am sick then I have on actually healing myself and getting better. For a reason I’ll never know, my mother struggles to emotionally support me, listen to my fears or my cries for help. Those needs make her uncomfortable to the point of pushing me away. I yearn for a call to just ask me how I am doing. Something happened in my childhood and for that she never forgave me and she has struggled to love me unless it’s on her terms. I choose to share this part of my story with you, to stress the importance of unconditional love, acceptance and support, and most important to know you’re believed. If you are someone who is struggling with your “invisible illness” I want you to know I believe you. So often those of us who are on this journey or have gone through it know the craving for love, acceptance and support, true genuine support. The strength to give that kind of compassion could start the healing to someone’s suffering.
The years I spent in self doubt and anger towards my defective body, over time caused severe damage to my spirit. I’m now learning to love myself for who I am, even if others find that difficult.
As time went on I met a man and eventually we moved in together. He was the first and only boyfriend I ever introduced to my children. I was led to believe we were going to get married. Going against you faith which is a huge part of me. I also was very upfront with him about my “fibromyalgia” which I was deathly afraid of telling him for fear of rejection. But after I told him he acted like a he knew what it was and I felt the weight of the world come off my shoulders and it was like someone finally accepted me for me. He really cared for me and my children and opened my eyes to things I was unable to see before. It was 1 year into our relationship which was 2 years ago this past January I became very sick after taking care of my son who had been sick. Looking back I believe whatever virus or illness we had was what induced both of our symptoms. I never fully recovered. I couldn’t get out of bed some days, my physical pain was at an all time high, everyday that went by I became worse and worse. I was seeing an upper cervical chiropractor who practices the Blair Method. I’ve seen him off and on for 14 years. He’s been an absolute blessing to me and my kids. He told me I’m one of very few patients that he has treated who has been so chronic. I was seeing him 5 times a week and still could not hold my adjustment. But I was so desperate for pain relief, if the visit gave me 30 minutes of relief it was worth it. That chiropractor, about 6 months ago mentioned to me that he had another patient who had something called Ehlers Danlos Syndrome, and thought possibly that’s what I may have. He immediately connected me with her and she has become my only real support system right now. Lisa has played a very instrumental role in my life and will continue to. Even if I just call her because I’m so scared and filled with fear, her prayers and encouragement will get me through challenging moments. She currently has her “official” Ehlers Danlos diagnosis and has joined me on my journey.
Unfortunately I was becoming more bed bound and trying to hide that I was getting worse. I would get up right before he came home and shower, do my hair, put my face on and start dinner so he didn’t know I was in bed all day suffering. I thought to myself, “This can’t be my life, you can’t just tell me I have fibromyalgia and the rest of my life is going to be this way.” So began my most recent journey which was to really find out the real truth of what the heck is stealing my life from me.
I was seeing a doctor at the time who was prescribing my pain medication and I went to him and said “test me for anything and everything!” And so he began testing me for anything I came to him with. Negative, negative, negative everything came back negative. Until one day I said “ok test me for Lyme disease.” And low and behold he calls me and tells me “Your Lyme test came back positive.” I couldn’t believe it! Finally I have a real name to all this suffering and I’m not making it all up. But more then any of those thoughts most importantly was I’ll finally get acceptance, love and support from my mother. Unfortunately it didn’t really work out that way. As much as I hoped and prayed after my treatment I would be “normal” and healthy, a hope that was not even for myself. It was only so I would not be a burden to everyone around me. So my Lyme began treatment began, consisted of 60 of IV antibiotics that were administered through a central venous catheter at home. I was connected to the line anywhere from 6-10 hours a day, depending how fast I could handle the drip without feeling worse. I dealt with vomiting pretty much every day, severe muscle spasms to the point they would look like I was having a seizure, I was so weak and in so much pain it was like death. Now during my treatment I received help from from my mother, help that I could not have done without. She picked the help that she would do, and I desperately accepted. The problem was the constant reminder that her help had an expiration date. The innuendos and comments she would make such as, “I’m not going to be able to continue this much longer, If your laundry is inside out when I get it that’s the way I’ll wash it and send it back and I’ll only do you and the kids laundry but not your boyfriends.” Those are a few examples, of what I interpret as conditions, control or plain convenience on her part and essentially the reminder once again that I was burden. And then the pressure of the expectation everyone assumed, “ok once treatment ended Kimmyn would be a brand new person”, was constantly on my mind and I lived in fear. My boyfriend during this time was extremely helpful and he did the best he could. It seemed he had genuine concern. At the same time I could feel his frustration and his own struggle of how his role was changing from boyfriend to caretaker. Also he was dealing with acceptance from his own family and their acceptance of me and my illness. I sometimes think if I had cancer it would be so much easier. Why is it that cancer receives so much acceptance and empathy? They thought he deserved better then a sick girl with no job and her two kids. When I wasn’t magically healed immediately after my Lyme treatment he didn’t have the strength to stand by my side and ignore the opinions of others, mainly his family. I believe that being in a relationship with someone who has a chronic illness takes a special kind of strength. You have to be able to stand through the storms not just hang around on cloudy days.
I ended up pretending I was getting better when each day I was getting worse. And I didn’t know how I went through such intense treatment and I was getting worse. And the fear I had to tell someone I wasn’t getting better over took me and it ran all my decision making. How was I going to tell the few people that were helping me that I wasn’t getting better? My mother had already given me her expiration date that her help was ending. And yes I was thankful for it but at the same time I felt I was a burden.
Well in October of last year I found a lump in my chest around the area my central venous catheter was placed. So per the advice of my doctor I went to the emergency room to get it checked out. And I couldn’t have been more shocked when the nurse gave me the news that there was a piece of the catheter left behind from when the doctor remove it. They also explained that it more than likely had been in my vein near my heart, but my body was trying to reject it and that’s the reason it worked its way to the fatty tissue of my skin. Recently in January of this year, I had the piece removed and the surgeon confirmed it was the “cuff” of the catheter. Now unfortunately I’m dealing with my incision sight looking very infected.
I will wrap this up with telling you currently where I stand, more like sit or lay down lol. I’m working on getting my “official” diagnosis. I have also been dealing with Mast Cell reactions for over a year. Covered in hives and red rashes daily. I have had a lot of labs done and it’s clear my histamine levels are bonkers high. I’m looking forward to meeting with a doctor who has EDS and Mast Cell herself. She also sees about 75 of us zebra patients in her practice. More heart breaking then my break up is unfortunately watching my almost 13 year old son present with serious POTS symptoms and has already been referred to a geneticist for Ehlers Danlos symptoms along with my daughter. So I’ll continue to do what I’ve been doing and fight. Now that my child has joined my journey the two of us are determined to spread the word. To tell everyone out there who may be suffering that we believe you! Like I said in the beginning this is definitely a bumpy road and it may get bumpier, until then…to be continued.