The other L word

I received test results today from a recent doctor visit. I have a positive ANA and other markers indicating that I may have Lupus. This was something that was ruled out in previous years, but has now come back around.

I’ve been having a lot of reactions to this bit of news. I’m trying to stay out of going tragic about it. I feel deep in my core that this could be the root of my illness. I know some people say Lupus is Lyme and visa versa but really, “who the feck knows?”. A lot of information is thrown around on the internet that has no factual basis in science, but is accepted as truth because of its popularity.

I started to consider what it would mean if further testing reveals that it is accurate. I felt that an enormous burden would be lifted from me. Everyone knows Lupus sucks. NOBODY wants it. A lot of people don’t know what Lyme is, or think it’s something that crazy people are making up. And the people who think this the most are the medical professionals in our society who experience us. So we must be crazy, right?

If this diagnosis were confirmed, it would mean I could have a legitimate title to what has been happening to me for the last four to five years. Perhaps people who have doubted me will feel what I have felt for a couple of moments. Perhaps people who have judged me will see me in a different light, as a person with an illness instead of a person making bad choices. Maybe I wouldn’t have to feel as guilty as I do for not working, not being a contributor to this sick and messed up society we are living in.

I would be more compassionate with myself because I would stop doubting the legitimacy of my illness. It would validate my experience that I’ve known all along that something was terribly wrong with my body. It seems as if it could change my perspective completely. I realize all of these things could be said about Lyme as well. But somehow in my mind and in society at large, Lyme is not enough.

*******

It’s been 24 hours or so since I received this news. In spite of my desire not to be tragic, I’ve become so anyway. I feel as if I was over-optimistic yesterday about how things might change in light of a new potential diagnosis.

First off, Lupus is about as difficult to diagnose as Lyme. People with Lupus have to fight for diagnoses and recognition from the medical community just like people with Lyme do. Even if I show up with lab results indicating Lupus, the medical community may still insist that I don’t have it. Obviously, no one wants a diagnosis of Lupus, or Lyme disease for that matter. I don’t know how this information will change my journey, if at all. People in the Lyme community will insist that it’s really Lyme, that everything is Lyme. I’ve grown tired of this perspective. Because the next step in that process is that antibiotics are the answer. I just don’t believe in this line of thinking. Lots of people who have tried antibiotics (including myself) have not gotten better. I’ve also grown tired of the “If you aren’t getting better with treatment, it must be mold”. All of these circular paths are total mind fucks for me.

I think sometimes about how as a society (myself included) we try to protect our children when they are young about the truth of life. We attempt to paint it as a beautiful journey, where you can achieve anything if you work hard enough for it. The truth of the matter is that life is ruthless. Life takes no prisoners. Good people get bad diseases.

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I’m like….

Do you ever feel like it is all just too much when dealing with chronic illness? That’s probably a stupid question because of course you do.

My experiment with LDN (low dose naltrexone) has ended. Each day I was getting sicker and sicker until yesterday when I decided I couldn’t take it anymore. There is a part of me that thinks I am a wimp for not being able to stick it out. But my body has always been incredibly sensitive to foreign substances and LDN was no exception. I dealt with a similar thing when treating Lyme with antibiotics. I got so sick I was bed bound. I came across a web site yesterday where people were saying that making yourself extremely sick with die-off is not necessarily the best path to healing. If I am so sick that I feel barely human I have no energy left for healing.

I started slow, at .25 mg and made my way up to 1 mg. After about three days of 1 mg I called it quits. I did some reading on the net and learned that many people (especially those with Lyme, Hashimoto’s or Candida) get worse before getting better. I have all three of those diagnoses so there you have it. Additionally, since I don’t have a thyroid gland, my thyroid levels are a major factor in determining my wellness on a day-to-day basis. I read that LDN can mess with your thyroid levels, which is something I already have to deal with all the time.

Some of the websites suggested that in order to get through it you would need to give up dairy and all forms of sugar. I drink coffee in the morning with half and half, sugar and honey in it. I eat yogurt for breakfast. Without having something to look forward to in the morning (coffee) I might now make it out of bed at all. I’m not ready to give it up. There are very few comfort things in my life and my coffee is one of them. Don’t tell me to drink it black, it’s not the same. So when I go on these websites that suggest I eliminate the only things that bring me pleasure in order to get better, I’m like….”NO”.

The other problem is that the LDN stopped my main pain modulator from working. I got off opiates a year ago and now use Kratom ( a plant) to help with pain and energy. It has been nothing short of a miracle in my life. So here I was taking a medicine that was making me feel worse and worse, my pain level was reaching up towards an 8 and LDN was blocking the only thing (Kratom) that helped with my pain and energy. It was a recipe for disaster and left me nearly debilitated, barely able to tolerate even the most simple of tasks on a daily basis.

I get frustrated with all the things we are supposed to do to get better. I’m in a vulnerable space right now anyway given all the stress this last year has brought and my teenager just starting high school. Not to mention having less than a hundred bucks to last for food and everything else for the next two weeks. I’ve been eating the least amount of food I can to try to make sure I have food on hand for the teenager. So no, I don’t need additional suffering right now. This is not the time.

LDN, Kratom, and a puppy

This life I have is not the one I wanted. I was never supposed to get sick. My body served me pretty well for about half a century. The only trouble I had with it was trying to get pregnant. It took me about 7 years before I conceived at the age of 41. My son is 14 now. I would love to tell you that he is wonderful and it’s such a gift and all of that kind of bullshit. My son makes my daily life about a thousand times harder than it would be. So I can’t say that right now.

I’ve been feeling pretty crappy at death’s door for a while now. It was bad before but this last week has been the worst. Most of my thoughts have been consumed with fear and anxiety about what has caused this most recent downfall. This kind of thinking is rarely fruitful but I seem to do it every time anyway. It’s like one of those “Wheel of Fortune” spinners where you spin it and wherever it lands you get some amount of money or you go bankrupt. I’m already bankrupt so I don’t have to worry about that. On my wheel the categories would be “Lyme”, “Thyroid”, “Sjogren’s”, “Hashimoto’s”, or the dreaded “Something unknown that no one has found yet but will likely result in a painful death leaving my son without a parent”. I think I could also include “lonely as hell” and “depressed as fuck”.

Of course I can’t exclude what the last year has brought. I moved from California to Oregon perhaps trying to escape (and trying to lower my living expenses). My son got into my medical marijuana and became a full on pot head. I freaked out and took up a friend’s offer to come back to Cali and stay with her until we “figured out what to do next”. I moved all my stuff back to Cali and put it in storage.

Fast forward three months or so and the friend makes it clear we are no longer welcome. We left, which seemed to upset her even more. So much so that she threw all of my stuff outside of her house. What followed was a month of fear and desperation as I tried to find somewhere we could afford to live on my current disability pay. We went from hotel to hotel room as I watched the only money I had dwindle. I finally had to surrender to the fact that we could not afford to live in Cali. I had already concluded this when I left the first time but apparently had forgotten.

My son was urging me to take him back to Oregon where he was convinced he belonged. Finally I obliged. So three months ago after a week-long stay with another friend who had ulterior motives for our short-term stay we found an apartment back in Oregon, where I had just moved all my stuff away from three months prior. Coming up with the money to rent the apartment exhausted the rest of the money I had. Without help from friends I would not have been able to eat or feed my son or buy necessary medications.

So here we were in an empty apartment. On a wish and a prayer and some airline points left from when I had credit cards, I booked both of us a flight to Cali to get our stuff. Just like with all previous moves, I had to leave stuff behind that wouldn’t fit. The move was costly in terms of money and in terms of my health and as soon as I returned things just went downhill from there. A tooth erupted in my mouth needing a root canal which I cannot afford leaving me no other option than ripping it out. I took antibiotics and decided to try to wait it out for a while. I’m vain and the idea of losing another tooth makes me feel so much more a loser.

The antibiotics gave me a familiar feeling of sickness just like when I took them for Lyme. So lots of sickness to endure but the pain finally let up. But since then I have not recovered, instead I have continued to get worse.

To make matters worse the move was expensive and left me without the ability to pay my rent. Without a friend offering to help I would not have been able to pay rent or feed either of us for the past month. The last week has been especially tough, and both of us have gone hungry for a couple of days. Luckily yesterday I got my check and some food.

There is one Naturopath in this town I see that I trust. She suggested Low Dose Naltrexone and a trial of Hydrocortisone for the adrenals. The first night I took it I couldn’t sleep for the entire night. Nothing makes me crazier than not sleeping. The whole next day I felt like I’d been dragged behind a truck. That night I cut the dose in half and had vivid disturbing dreams all night. The next day, same dragged truck feeling. Last night same vivid dreams although slightly less disturbing.

I have been using Kratom for a year now to manage pain and fatigue and it has worked really well. Since Kratom works like an opiate it makes sense that because Low Dose Naltrexone is an opiate blocker that it would no longer work. Which is exactly what happened. But additionally, I believe it precipitated an opiate withdrawal from Kratom that is worsening my symptoms. I also read up on Low Dose Naltrexone and found many forums which suggest that initially LDN can make you feel worse, especially if you have Hashimoto’s, which I do. One of the sites said to try to stick with it for at least a couple of weeks or more because the benefits can be extremely good. One site said if you haven’t tried praying before this would be the time to start. This drug has created remission for people with MS. It works on endorphins and actually improves the immune response. I didn’t want to take it before because I wanted and needed my opiates to get through the day. Then I needed my Kratom to get through the day. So I guess I am going to have to give up my Kratom. I’m not happy about this at all. I freaking loved my Kratom. Now I only have cannabis to get through the day. I am glad I have cannabis though.

On a final note one other thing I did while in Cali was I brought home a puppy. It seemed like a good idea at the time. It seems like my good ideas turn out to be pretty bad. He is probably the most adorable puppy on the planet and the smartest one too. But he makes each day immeasurably more difficult just like the teenager does. He chews, he poops, he pees, basically everywhere. He requires me to leave the apartment. Just like my teenager does. I suppose these could be good things but all I want to do right now is lay in bed, preferably unconscious or stoned out of my mind until whatever this is passes. I pray that it does.

Decay

After a round of bee venom therapy last year I wanted to believe I was done with Lyme. Or at least done with the active disease process of it. I’d found some supplements that seemed to help with symptoms and I thought if I could just get my thyroid under control things could be good. At least good enough for me to make an attempt at returning to work.

Then I went through a number of very stressful events. During this period I had my usual daily symptoms, with a few new ones here and there. At long last dealing with the most recent crisis came to an end and although it took everything I had, I made it through it.

The very next day I woke up with severe tooth pain on my left side. It was very similar to pain I experienced 2 years ago when one of my molars erupted. I had to have it extracted, and then I developed TMJ.

I went to the dentist and he said the tooth is dying and it needs a root canal. I don’t have money for a root canal so my only treatment option is extraction. He gave me amoxicillin to help with the infection. I took it religiously for about four days and finally the gut wrenching pain began to subside. Prior to that, the pain had spread up along the side of my head, all along the left side of my face into my sinuses, and down into the left side of my neck and shoulder, where I almost always have pain. The pain was so severe I had to take Vicodin around the clock to deal with it.

But I also noticed something else when I started taking the antibiotics. I became severely exhausted. My brain became extremely foggy. The hissing in my ears increased, and so did my anxiety. The symptoms were so severe that I was basically bed bound.

Then I began to recognize the feelings I was experiencing as being similar to the die-off I experienced when I was being treated for Lyme with Doxy and other antibiotics. I did some research online and saw that Amoxicillin is indeed a Lyme killer. The feelings I experience as a result of die-off are too much for me. That’s why I gave up taking antibiotics over a year ago.

So now I am wondering if this is Lyme in my jaw (of course it probably is). I’m wondering if I can kill it off and save my tooth. I swore I would never go back on antibiotics again for Lyme. If I had some bees around I would sting my jaw.

As I write this my bad tooth is beginning to throb, like the beat of a drum in the distance. I know about cavitations. Cavitations are for people with resources of which I have very little. I think it’s possible that I would rather limp along at 50% than endure another treatment with antibiotics.

Oregon, part one

After moving from Cali to Oregon in Sept of 2016, in January of 2017 I decided to high-tail it back to Cali. My then 13-year-old son and I were to live with a long-time friend. Although her life was quite strained with many children of her own she offered this as an opportunity to help, to allow me to heal, and to help me with my son who was on the fast track to becoming a teenager. I saw her offer as an answer to my desperate pleas to the Universe/God/Source for help.

While in Oregon I had started using bee venom therapy for Lyme disease. This involved being stung by live bees three times per week, starting with two per session and gradually ramping up to ten to thirteen per session. The stings themselves were painful, but the after effects were remarkable. An adrenaline rush lasting several hours were the reward. I began to think I had found my cure. I began to consider the possibility that I could return to a healthy state.Photo on 11-14-16 at 11.46 AM

With this surge of adrenaline and confidence, and after reading about others experiences with bee venom therapy on social media, I started to believe that bee venom could heal me from anything and that I no longer needed medication to address some of my other chronic illnesses, mainly, depression and hypothyroidism due to a total thyroidectomy four years prior. I hate to pathologize everything that is good, but I would say that the bee venom initiated a hypomanic state, which was both good because it was motivating, and problematic because I dramatically lowered the dosages of both my antidepressant medication and my thyroid medication.

After stinging for about two months the apitherapist who had been assisting me had some health problems of her own and I was forced to begin the process of keeping, handling, and stinging myself with the bees. I kept them in the top of a closet in my house where my cats couldn’t get to them. When I would walk by I could hear them buzzing, a sound that became foreboding. I had begun to remarkably feel worse, no doubt in part to the reduction of my medications. On Thanksgiving day 2016, I stung myself 13 times. I was so sick afterwards that I felt barely human.

Everything began to feel bizarre. I was stinging myself with bees. There were bees in my house, and I had a fear they would escape and swarm in the house while I was sleeping. It was an incredibly wet, cold and dark winter in Oregon, according to the locals one of the worst they had seen a long time. Due to my thyroid being out of balance the cold became intolerable. I simply could not stand to go outside. I didn’t have the proper clothes to keep me warm after living in Cali for almost a decade. And I was desperately broke. The monthly disability pay I was receiving just would not stretch far enough to make ends meet. I would get paid once per month and by the third week after getting paid I was digging around for coins just to buy food. It’s one thing to be desperately broke but to be so broke that you cannot feed your child is another things entirely.

I stopped stinging and finally went to see a doctor. My TSH, which should run between .5 – 3.00 was 68. My mood is dramatically affected by my thyroid levels. I was so depressed that I only wanted to sleep. There were other factors as well. The election of a white good ol’ rich pussy grabbing boy to office affected me deeply. For myself and for others who have victimized by sexual abuse, I felt violated. I felt violated by everyone. It affected me so deeply that I didn’t understand why the world was still turning, why people were still walking around acting as if everything was normal.

In part because of my failing health and in part because my son had virtually transformed into a zombie teenager overnight, he and I began to experience severe conflict. It was quite different from any conflict we had experienced before. He had grown taller than me. He was willful as hell. One day it came to a head when he put his foot in the door to try to provide me from leaving the house. I was raised in domestic violence and I had several relationships in my life that replicated that. I was not about to go through that with my son. He was getting in trouble at school. And then the worse thing happened. I found out he was smoking marijuana. And it wasn’t just any marijuana. It was MY marijuana, my medical cannabis that I have used for the last several years for pain control and depression.

At the time it felt cataclysmic. One of my main goals in becoming a parent was to not repeat the mistakes of my own childhood. I wanted my son’s life to be different from mine, and I didn’t want to raise my child in any way that resembled my own upbringing. I grieved for the sweet baby son I had once had. I grieved for the parts of his childhood I had missed due to overworking and illness. I grieved for the time when it had been so easy to make him smile, laugh, or giggle. I desperately missed my baby, who I knew would be no more.

The Others

My son and I are homeless now. We are staying with a friend until her roommate returns from a trip on the 22nd. After that I don’t know where we will go. We are in the Bay area of California, perhaps one of the worst places to be homeless due to the unavailability of affordable housing options.

Like most things that have happened in the last five years or so since I lost my health, this was unexpected and unimaginable. We were staying with a friend. Something went terribly wrong. If I could say exactly what it was, I would. I’ve been over and over it in my head. When it first happened I went into survival mode. I had to find us housing in the form of a hotel. I had to figure out what to do about my son’s nearly finished school year. I had to figure out how to get my belongings out of my so-called friend’s house because she was threatening to throw them out in the yard. She followed through on her promise. I had to leave many things behind because my body gave out. I had to use the money I had saved to gain independent housing on a week’s hotel stay.

My “friend” claims I am playing the victim. She says that I was using her by staying with her, that I have serious problems and that she can’t believe she ever tried to help me. I don’t know what caused her to draw these conclusions. It was entirely her idea that we come and live with her. She said it was so I could rest and figure out what I was going to do next.

We were there for about two months. About two weeks after we arrived I was served papers by my Ex in an attempt to gain custody of my son. At the time I found out that via emails and social media, my son was conspiring with her against me. He wrote a letter detailing all of my failures as a parent presumably to give to a judge. I saw an attorney. She told me that my Ex has very little legal leg to stand on, that she would never be able to gain physical custody of my son. I was required to respond to her petition at the cost of $500. I applied to have the fee waived because of the little money I get from disability each month was going toward attempting to gain our own place. The court denied my petition, citing that I had money in the bank. Nothing about it seemed fair or just. It didn’t seem to matter. My Ex accused me of things that were not true. That didn’t seem to matter either. She wants vengeance. It seems she will do everything in her power in an attempt to harm me.

And now she has a whole list of people on her side. The growing list of people who hate me and want to harm me in some way. I saw on her Facebook page that another one of my Ex’s from years ago is joining her in her efforts to steal my son from me. Now my so-called friend joins the growing list of people out to get me. Included on this list are my half-siblings. In all of these instances the only thing that seems to matter is what they say I have done. There is never an accountability on the others part for actions that they have done. Why do I make people so angry? Why do people who once loved me (or so I thought) turn on me? Why are they succeeding in destroying me?

Two nights ago I was despondent. Gaining the ability to rest for a few days without worrying about housing allowed all of the feelings to come to the surface. I felt like the only solution was to hand my son over to my Ex and to kill myself. I’ve wanted to kill myself many times but have never had the courage to go through with it. People know this about me because I am an open book. I don’t say these thing to try to manipulate people or for any other reason except to say I’m desperately sad, I’m desperately alone. I can’t see a reason to continue other than my son.

I’ve given up the hope that I will ever see anything akin to wellness. Whatever it is that causes pain and sickness in my body continues to progress despite anything I have tried to get better. My muscles tighten and constrict involuntarily. My spine twists this way and that. Is it Lyme or something else? I have no idea. I’ve seen hundreds of doctors. I’ve had surgeries. There have been no solutions.

I keep thinking that I must deserve this because it is my reality. I must not deserve my son although many times I feel like I am the only one who can understand him. I never imagined that my son would turn against me but even that has happened. I don’t intentionally set out to hurt people, and many have done worse things than I. I feel at times that there is no other conclusion to draw except that I am unworthy of existence.

I long for the past, to a time when I didn’t know the things that I know now, to a time when I felt worthy of redemption. To a time when I had health and a sense of purpose. To a time when there were people on this earth like my father and my aunt who always loved me no matter what happened. To a time when I had a family, no matter how disjointed. To a time when I had a mother who still knew that I was her daughter. To a time when I could pull myself out of anything, when I knew I could rely on myself.

Defeated

For a very long time I’ve felt as if I don’t belong anywhere. I feel so disconnected from the life activities of other people. I’ve been out of the workplace for four years now. So I am not a worker. I am estranged from my siblings and my parents are dead. I feel awkward and disconnected from other people. My son is a teenager and is hell-bent on independence.

I’m living in the bedroom of a friend and my son shares a room with her son. While I could look at this as something to be grateful for I see it as evidence of my failure. I fear any day she will tell me that she can’t handle us being here anymore. I have a very small amount of money, perhaps enough to rent somewhere nearby. But I can’t fathom living here in this town. My son hates it too. My friend offered to let us live here in order to help us out and I fear that if I move somewhere else that she will see it as a betrayal of her help. She feels it would be best if we moved close by so that she can help with my head strong son. My son and her son look out for each other and I think her feelings are somewhat motivated by that, that this could benefit them during high school. I can see the potential benefit of this as well. But we are 90 minutes away from what I would call “life”. I feel like living here will slowly kill my soul.

I’m so overwhelmed by my problems. There are so many I don’t know where to begin. I feel as if life has been conspiring against me for many years now.

It’s so difficult for me to be at the mercy of my body on a day-to-day basis. When I wake up in the morning my body is full of pain. For about 6 months I have been on a mission to recover and work again. It started with bee venom therapy. With the help of someone I stung myself with bees over a two month period. I slowly made my way up to 12 stings 3 days a week. I saw some improvements and started to believe I was going to make my way out of this hell I’ve been living.

But then my thyroid hormones crashed and got severely depressed. I stopped stinging. My son started changing dramatically and was aided in his teenager ways by my lack of ability to respond. I saw a Dr. who confirmed my thyroid was way out of whack. I was encouraged by this because I knew that getting my thyroid back in balance would help me feel better. I started taking T3 again in addition to T4 and I started thinking I was really going to get better and make progress. I tried hard to get my thoughts in the right place.

I think it’s really important to keep thoughts about the illness positive. But I don’t always succeed at this. When I have a lot of symptoms I often start thinking that this is Lyme resurfacing, and that there is no way out of this unrelenting hell. I did about a year of antibiotics off and on without much improvement. I’ve been to dozens of doctors and specialists. None of these avenues have provided much relief with the exception of drugs to mask symptoms.

So I was charging along and I felt like I was going to think my way out of this thing. I started some new supplements. I noticed small improvements. I moved in anticipation of attempting to return to work. It’s not like I felt great or anything. But I had some fairly good days here and there. The weekend before last I had two really good days. But then that Monday I woke up feeling horrific. I felt like I had some kind of virus/allergy attack. My nose wouldn’t stop running. But the worst part was I felt all over intense body pain. I also felt like I couldn’t think. My doctor had raised my thyroid dose to a higher level than I had been on in a long time. I was down with it because I know that stabilizing my thyroid is the key to any sense of well-being I may experience. I had been on the higher dose for one week, and overnight I felt like I lost any ground I had gained in the past few months. It’s been a week now but my symptoms have only slightly improved. I feel like the virus is still at work. Nothing seems to be helping my pain. My brain is slow as molasses. I’ve been feeling like suicide would be a good option. I’m not going to do it because of my son.

Very small improvements seem to be followed by severe setbacks. This has seemed to be the case for years now. I have no hope. I feel like I don’t matter to anyone. I feel like I am in a constant state of grief over all the things that have happened over the last several years. I think it’s too late for me to be able to find my way out of this. I feel like I am on my way to homelessness. I think other people see me as worthless. Life is a merry-go-round that I watch other people ride. Surely I must deserve this situation. I created this loneliness and this alone-ness. My hate for myself and who I have become knows no bounds. I am pathetic. I pray for death.

Fibro or Lyme?

Check out the link below to a great post by Kimmiecakeskickslyme about the connection between Fibro and Lyme. And here are my thoughts on the matter:

Fibromyalgia was invented by pharmaceutical companies who needed a market for their drug Lyrica. I’m not just making this up. When I was in graduate school a psychiatrist explained this to us. When I worked in a major healthcare system in the US, patients who were diagnosed with Fibro were considered as psych cases. I think you bring up an important question, but another important question is “Is Lyme disease really Epstein-Barr, or is Lyme disease really a chain of events that creates an autoimmune disorder in the body”. I think this is an important question because getting a Lyme disease diagnosis and going to an LLMD is not necessary an indication that someone is going to get better. In fact, they are likely to get worse. And the worse they get the more they are told that they are getting worse because they have to endure the treatment in order to get better. In my mind a diagnosis of Lyme disease is not that much of a step up from fibromyalgia in regards to getting better. I believe the symptoms we all experience (which of course are very real and debilitating) are a result of a colossal failure of our bodies to be able to respond to multiple stressors, physical mental and spiritual. Many of us were Type A personalities before the illness began. So we are in a weakened state when we encounter pathogens via a tick bite, or something else. Perhaps we also experience severe mental and emotional stressors like loss or disillusionment. Perhaps we also have unresolved trauma from the past that is stored in our bodies as pain. It’s an an assault from all directions to the point where the organism (us) systematically shuts down. Then we travel our journey from doctor to doctor trying to find out what is wrong with us. We want someone to fix it so we can get back to work and parenting and care-taking and whatever else we do. Eventually we find our way to an LLMD and now our bodies are being assaulted again by multiple antibiotics, many of which are the strongest antibiotics used in medicine today. Think of this. An organism has a failing immune system and instead of trying to re-establish the immune system to allow the body to heal itself, we throw multiple pharmaceutical agents at it as if they were candy. I feel like you, that my position on this is controversial. It scares me a little even to post it here. There is so much emotional and physical angst related to this illness. There is also a lot of just pure junk science out there related to Lyme disease. And behind it all is this huge roar of anger about how we have been screwed by the medical system, or bodies, and the people who have abandoned us because they don’t believe our symptoms are real. I’m not going to wrap this up by saying I know what the answers are for anyone other than myself. For me, the road to health involves addressing the physical, mental and spiritual aspects of this illness and then creating an environment for the body to heal itself, which is what it’s designed to do. Thanks for taking the risk of bringing up a controversial topic.

kimmiecakeskickslyme

 This post is geared toward those with a Fibromyalgia diagnosis, but might be a good read and please share this information as I feel it could help people find answers and a path to a normal life. 

 

 I know this post is going to offend. Ok maybe REALLY offend. But with the recent great article posted by Envita, I think this topic needs some further dwelling and consideration. But readers, I am blogging with all the good intentions as I want nothing more than you all to get your lives back. Many of you are completely debilitated, and your lives have been destroyed. 

 

I am hoping that you can all read this with an open mind. 

 

This one really hits home to me since I was misdiagnosed with Fibromyalgia and CFS at the age of 21. I was an overachiever and had all the “trigger points”, IBS…

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Gratitude

Yesterday I received a phone call from a dear friend. I had sent her a message on Facebook about the current state of my affairs (chaos). Her unconditional love inspired me. I feel so grateful today for my incredible friends. When things are gloomy I often bemoan the fact that I have lost my original family to death and estrangement. I lose sight of the fact that I have a family of friends who are here to support me in ways that my original family could not.

I moved from California to Oregon in September thinking it was going to make my life better. Instead things got worse, much worse. I would say the last few months of my life have been the darkest. But I have had many dark times throughout my life so it’s difficult to know for sure. Lately I have been plagued with fear and depression and an overall sense of failure. I imagine looking at my life from the outside in and all I see are bad choices. There is chaos all around me, some of it a result of choices, other parts related to life’s circumstances.

Then everything exploded. I found out my 13-year-old son was using drugs. After just a short time here (5 months) it became clear to me that I needed to get the hell out of here. I’ve felt completely isolated here. It’s been raining or snowing for what seems like months now. I’ve felt as if I have been living in solitary confinement. I realized I had underestimated the consequences of moving here. I left behind people who love me and can help me to raise my son. I left behind doctors who knew my situation and were sympathetic to it. I left behind my church.

Out of sheer desperation I sent my son to live with a dear friend who could provide him with the boundaries and structure that he needs right now. My disability company was threatening to cut off my benefits because I wasn’t seeing doctors regularly. The climate in Oregon for Lyme disease treatment is much worse than California. There is a structure here reinforced by universities that Lyme does not exist and does not need to be treated. I could go on and on about the difficulties I’ve experienced here but I won’t.

Soon I will be leaving Oregon to live with the family that is caring for my son in California. In my mind that meant significant defeat. I’ve had to negotiate with my landlord to break my lease. That’s another mark on the side of “I’m a bad person”. I owe the IRS money. I owe money on student loans. I get mail everyday from creditors I can’t pay. There are no money cushions left. No savings, no retirement. No credit cards. I don’t own a home. I don’t have health insurance. My car needs repair and maintenance work. My son appears to be embarking on the same drug filled chaotic path that I myself lived through when I was his age. Everywhere I look there are problems over which I feel I have no control.

But yesterday when my friend called, she didn’t say, “You abandoned your son!” she said, “How can I help?” She said, “I’m so sorry this is happening to you.” She reminded me that I am a talented painter. There was not an ounce of judgment in her tone. After the phone call I felt a bit lighter. What did I do to deserve a friend such as this? If I am such a complete and utter failure, why do I have such incredible loving friends who are always ready to remind me of my goodness?

 

Prayer

So much despair. Feel so worthless. Can’t pull out of it. So much physical pain. So lonely, so alone. Jealous of all humans who seem to be able to do something I can’t, which is everyone. Feel broken and defeated. No end in sight. How do I keep going when I have no hope? How can I create hope when there is no reason for hope? Feel like I’m losing my precious son. Feel like I have failed him miserably. Feel irredeemable. Somehow must keep going when body is failing, mental is failing. Everywhere I see only death and destruction. Trump. Health Insurance. Death and Loss. So much unknown, everything unknown. Friend’s words are hollow, don’t touch my heart. I think they are over this sob story. Want so much to escape. No escape. Help me please, anyone. Hear my prayer God, please.