Tags

, , , , , , , , , , , , , , , , , , , , , , ,

It’s been a long time since I’ve written a personal post. I think about it all the time, but have been unable to write. I have been told I’ve just dropped off the face of the earth, and you know, it’s somewhat accurate. I have fallen. I have become very ill. I’m writing you from my couch this very moment, a place I have spent the better part of the last year.

It all started in the summer of 2014. My son, whom I lost to adoption had just turned 19, and I reached out for the first time to the adoption community online for support. I had stuffed a lot during those years, and there was a flood of emotions that happened when I opened up about my families 100 yrs history of adoption. To say it was overwhelming would be an understatement. To be able to speak my truth, openly and honestly and to have people say that they too had similar situations brought me such a feeling of community, and acceptance. I had spent the last 20 yrs trying to tell the Drs that my depression had been brought on by losing my son, only to be told that I didn’t know what I was talking about, or be told I needed to “get over it” or I needed more therapy, or more grief counseling or more…… the list goes on. In short, I was a liar. Except for the fact that I was telling the truth. I knew exactly what was wrong. I did know how I felt.  Apparently, they knew better. Someone who had never gone through it, and at best, had a second or even third hand account of what losing your child to adoption was like. The adoption community got it. I didn’t have to explain myself. It was a beautiful thing.

With all things adoption though, there is rawness and pain. Reading others accounts of their experiences and writing out my own took a toll on me. My health started to decline, and I blamed it on finally opening up about my experience, and the price of letting all that trauma loose after a lifetime of complacency and silence.

Around the EXACT same time, I was working on a farm. I had a long rotating job list throughout that summer. When there was a shutdown of gas-powered and electric equipment due to the dry conditions, I was assigned to take to the fields pulling thistles. I know, glamorous right? I didn’t mind it so much though, along the fields was a wooded area I would often see deer, and in the pond off in the distance was the ducks, birds and frogs. It wasn’t so bad. On hot days I would stay in the more shady areas and would sometimes take my hat or sweatshirt off and lay it on the grass. I also worked in shorts most of the time. Over the summer, I got bitten by many fleas (from the chickens) and spiders, and mosquitoes in the tall grass. I didn’t think much of it. It was the price I paid for working in paradise outside, instead of cooped up in an office somewhere pushing paper.

In mid august of 2014 I finished clipping the rose bushes by the road, and went up to the barn to sign out for the day. I was almost tripping over my feet I was so tired. By the time I got home, I felt like I had been hit by a truck. I went straight to bed. I developed a fever, body aches, and headaches that kept me in bed for three days. By the fourth day my boss was getting antsy for me to return so I dragged myself out of bed and went back to work, scared that if I didn’t I would lose my job.

As the weeks following my “flu” passed, I never really “got over it”. I was unbelievably tired all the time, and was having trouble lifting the 50 pound bags of chicken feed I usually lifted with ease. I was having trouble remembering my duties so I started writing lists to remember, and despite my very labor intensive job, I started gaining weight, despite no change in my eating habits, or physical activity.

The following month I had to leave my job. I could no longer perform my job due to the symptoms I was having. In Dec of 2014, I was diagnosed with Hashimoto’s disease, which is an auto immune thyroid condition, and was told by my Dr that taking thyroid meds would make all these symptoms I was having go away. I also developed lichen planus, another auto immune condition in my mouth. My body was suddenly falling apart, and I didn’t know why.

Basically, I went from a very strong independent woman, to a woman who suddenly had developed two autoimmune conditions, and had to spent most of my days on the couch. I was unable to work, hooked up to a heating pad around my hips and lower back all the time, and I was wondering if I just might be dying. Pain and fatigue my only constants. Blinding headaches kept me out of the light, and I gained a new perspective on migraines, thinking that I had somehow inherited my grandfathers predisposition to them. Despite never having issues with them ever in my life, I figured it was genetic and I would just have to live with it

In between January and May, I saw my Dr several times. I would be in tears in her office telling her of my pain (especially my hips and lower back which were making it difficult now to walk), my fatigue, my inability to work. She would listen, and tell me to come back in a week to see if it had resolved.  She completely ignored the symptoms I told her about and refused to give me anything for the pain I was in. It was “all in my head”. I just needed to push myself (read: you’re getting fat and you’re lazy). She told me to take aspirin, despite the fact I told her I was taking three Motrin every four hours and it was having no effect. She told me to walk thirty minutes a day, despite me telling her that when I walked even ten minutes my entire body became inflamed. I thought it was the oddest thing, but she ignored it. She told me I was “depressed” and that I should just go back to work, get some exercise, and that my pain was all in my head.

She refused to, over the course of those months look at anything else but depression. My thyroid labs came back as within normal ranges but I was feeling like crap. She told me if I took the thyroid meds I would feel better, but when I didn’t she blamed it on me. She had decided that because I “opened the can of worms” (her words) and started speaking about adoption (because she knew three birthmothers who were “fine”), that I had stressed myself out and had caused these auto immune diseases to rear their ugly heads. Adoption, the gift that keeps on giving. I understand that stress can reactivate all kinds of symptoms in the body, so I see where she was coming from, but she doesn’t know me personally. She hasn’t read my blog. She doesn’t realize I’ve faced worse. Actually, if she really did know me and listened to me when I told her of my experience with anti depressants which I wrote about here , she might have actually dug deeper into the source of my malaise. Instead, she type cast me as depressed, because 20 yrs ago I had to go on medication to help me deal with losing my son? The woman was infuriating.

My next visit, I didn’t see her right away. She had a medical student doing a practicum, so she had looked at my hips and lower back when my Dr was out of the room. I told her of my difficulties moving around and that walking was becoming more and more difficult. She offered to “help me” speak to the Dr about getting me a prescription for something anti inflammatory and see about further testing. I smirked at her and gave her a wee little “bless her heart”, because she didn’t know what I had already been through. When the Dr came in, the student reported her findings. She had found that my hips and lower back were hot to the touch and inflamed. She spoke of my decreased mobility, and my desire for a stronger anti inflammatory. She stopped the student from speaking, and told me in front of this medical student that “this is the first time I’ve ever heard of these symptoms” I just broke down in tears. Then, I got angry. I have to say it was one of my more colorful soapbox moments. I called her a liar, and I then gave her and the student (my new witness) a run down on the last 4, or 5 visits I had in the office.  The end result had my Dr looking at me and opening and closing her mouth like a guppy, and stammering “But I didn’t write that in my notes.” She was all blotchy and rattled because I had caught her in her lie with a witness. After months of getting nowhere with her, she suddenly wanted to offer me a prescription for an anti inflammatory for my pains. Seeing she was more agreeable with a witness present, I asked her if there were any tests we could do to rule out the cause of my symptoms. She felt no testing was needed, but wanted to get me the number of the psych nurse.

Needless to say I fired her that day. I was totally triggered by her treatment of me. After years and years of Drs telling me they knew better and I didn’t know what I was talking about, I took my power back and I walked out of that office.

On a friends suggestion, I started to see a Naturopath. I told her of my diagnosis’, and everything leading up to. She took me seriously and agreed with me that something more was going on. After a month of various tests, questionnaires and dietary changes, I had my answer. I really am that sick. I have Lyme disease. No more second guessing myself.

My naturopath suggested I get tested for Lyme disease after I filled out a questionnaire about it.  For those of you elsewhere, the test in Canada for Lyme sucks. You can read about it here. The chances of me getting a negative were likely. Most people in Canada struggling with Lyme, or Lyme like symptoms get tested through a lab in California called IGenex. 

In the meantime, I was looking for a new family Dr. I found one willing to take me on with my Hashimoto’s diagnosis. He is an older Dr, but he seemed in the know about hashi’s not just being “hypothyroid”, and seemed comfortable with autoimmune issues in general. He asked to get my patient records sent over from my previous Dr, and I agreed, only if he would give me a copy of everything in that file. Yes, I know I have a right to see my file, but because of my rather dramatic exit from my previous Drs office, they had been ignoring my requests for a copy of my file for the past three months. (FYI, I did get a copy of my file from her. In it, there was no mention of pain or that I was unable to work, no mention of the symptoms I had been having. There were lots of notes stating “patient depressed, refuses medication” “patient gaining weight, refuses to exercise”. No notes, really, on the real reasons for my visits.) He agreed, and we proceeded forward. The following week, I received my labs back from IGeneX. I am positive for 6 bands on the western blot test. I am not however, considered CDC positive (If you are interested in how to read the lab results and an explanations of the bands go here.) I am IGM positive for bands 18, 34, 41, 58, 66, 83-93. I am IND for band 31. In other words, I’ve got lots of positive going on!

I felt like everything was surreal. I felt sort of detached like I did after I lost my son. Life was happening around me, but I wasn’t really there. I was in shock. This wasn’t going to be a “quick fix”. This was going to be a life long, disabling illness, that by all accounts is really hard to diagnose and even harder to treat. I thought “okay, at least I have a positive test though”. I had joined a group for women with Lyme disease and discovered testing isn’t all that accurate. There are a lot of false negatives. In my search for answers and tips and tricks to healing myself from Lyme, I ran across so many articles and first hand accounts of false negatives. People who have all the symptoms of Lyme but keep testing negative and are told they need psychiatric help, or they are told they have MS, Lupus, Fibromyalgia, or in rare cases, even ALS.

I considered myself lucky to have caught it relatively early in its infection. I figure I got bitten sometime in July, and I don’t recall a bull’s eye rash, but my legs were always covered in bites, and because I put my sweatshirts and hat on the grass sometimes while I was working, I could have been bitten somewhere else on my body and not known. Lets face it, the little buggers are the size of a poppy-seed.

I have been treating my Lyme with herbal remedies such as Japanese knotweed, and various anti microbials. I take herbs to support my immune system, and drink lots of water to help my body detox. I have also been following the A.I.P protocol which has really helped with my inflammation. This past June before starting A.I.P I was down to literally a handful of foods my body could tolerate. Most everything I would put in would cause me to bloat, looking about 7 months pregnant in about 30 min after eating. Lyme has literally DESTROYED my digestive tract. I’m happy to say, I can now tolerate most of what I put in my body again, which is a huge relief. I credit Slippery Elm, and Digestive enzymes for the support they gave me to help me heal my GI tract, but I know in this regard, I still have a long way to go.

I finally got back to my new family Drs office, because he had received my file, and we sat down to have a chat. The first thing he says to me is, “So I received the results of this so-called Lyme test of yours.” My chest started to tighten, I started to feel small, like I had done something wrong. He looked down his nose and over his glasses at me. “Yes, as you will see, I have indeed tested positive for Lyme, and I wasn’t sure what to do next, is there someone who we need to notify?” He asked me where I think I may have gotten bitten. I immediately said “here”. I explained (for the umpteenth time) my work history on the island, and when I figure I was bitten based on the timeline of my symptoms. He again clarified that before this I was a strong, healthy woman with no other health concerns which I confirmed. I confirmed that other than the occasional trip into town for groceries, I had not been off the island in the woods anywhere else.

He wanted me to come in and book a time to have a physical done. He stated that the test I had done was from the USA  and he was not willing to accept those results. He said he would be willing to give me an ELISA test to “humor me” (remember the Canadian test that sucks?). He claimed that what I have is a “false positive”, and that Igenex was not a trustworthy lab. He claimed that he could submit his own blood in for testing having never been exposed and get a positive result. I told him to do it then, and prove it to me…he declined. In my opinion, he was being a dismissive ass. Lyme in Canada as a whole has become a real issue. After all I had been through, even with a positive test result he didn’t believe me. I made the appointment for the physical (now it was my turn to humor him) and left the office.

The researcher in me was ignited. I looked online for articles on false negatives, and then I looked for false positives. There was tons of info on false negatives, but there was next to nothing on false positives. As opposed to the mountain of info I found on false negatives, I found a staggering 2 articles that talked of false positives. One spoke of how a false positive could happen if you had exposure to the Epstein Barr virus. I’ve never had mono. The second was an article from Australia (where they have a Lyme epidemic but the government refuses to acknowledge Lyme disease AT ALL) stating that the chances of a western blot being a false positive are 0.01%.

Only 0.01% of positive Lyme tests are false positive (i.e. one in ten thousand positive tests is a false positive result). What is much more common is a false negative test for Lyme disease (especially in Australia where the testing is a lot less accurate than in the US or Germany). A Columbia University study found that current Lyme disease blood tests may miss up to 75% of chronic Lyme disease patients.

So Australia, who admits their testing is less accurate than the USA, makes this claim which means the test I got was even more accurate. Positive means positive. My Dr is an idiot. Especially after what came next. I go to his office to have my physical which consisted of the usual, and then he sits me down and proceeds to go over my file. I told him that I had been struggling with the neurological symptoms of the disease, and he said, “Your chart says you have refused anti depressants, is that true?” I explained to him why and I was again brushed off. I was told without anti depressants I was not going to get better, and thinking I had some horrible disease wasn’t helping me. He claimed again that the Lab gave me a false positive, and there were recent reports of this issue. I found ONE article. He also said that he called the CDC  himself and they told him that there had been no confirmed cases of Lyme on Vancouver Island for the last eight years, and that there had NEVER been a case on the gulf island on which I live. (I’m still trying to find his source for this garbage).

Interestingly enough, the vets here were more than forthcoming that Lyme IS on the island and that they vaccinate pets for it here all the time. In fact, on Vancouver Island there is an Member of Parliament here trying to change things. Elizabeth May, has made it a priority to get people talking about Lyme and taking it seriously. Her efforts made the Bill C-442 come into being. Thanks to her, change will be coming. In my opinion, one of the biggest hurdles they will face after setting down treatment options, is how long to treat. Most Drs, mine included, think that Lyme is a very curable disease when caught in its early stages and that two weeks of an antibiotic like Doxycycline should be enough to kill the infection permanently. My Dr believes that because I did my two week stint of Doxycycline, that even if I did have it, I was “cured” back in August.

My symptoms persist.

I wasn’t diagnosed until after having it for more than a year, and by the time I was diagnosed my kidneys, liver, thyroid, GI tract, and brain had all been compromised. According to him, Chronic Lyme does not exist. He is not alone in his thinking, but I have yet to hear of ANY patient with Lyme to say that. In fact, it can take years to put yourself into remission depending on how long you’ve had it, because it hides in your organs, and can change form if necessary to avoid being killed by the antibiotics. A bacteria that can change form scares the crap out of me.! There are people out there who believe that Lyme disease is a genetically engineered bio weapon and that Lab 257 on Plum island is where Lyme was tampered with during and after WW 2. They claim, Lyme was purposely released a couple of miles from where the Lyme epidemic started. I own the book Lab 257, I haven’t read it yet because my symptoms have made it difficult to read.

So, this is the reason I haven’t been around. My symptoms of Lyme have been very debilitating, but I know they could be worse. Apart from the usual tiredness, and aches which some days I can find my way around, I struggle with more serious issues every day, such as my hands not having any strength in them. I’m always dropping things now. My ankles, hips, knees, lower back, shoulders, and neck, at some point are aching throughout the day, the ache seems to migrate which makes me look like a nut when I’m trying to explain it to my DR. When I’m on my feet for longer periods, or I get out and go walking, I pay for it dearly. I’m hooked up to my heating pad the rest of the day. My entire body gets inflamed. It doesn’t matter if it’s ten minutes, or if I’m standing in the kitchen cooking (everything from scratch) for hours, the pain is the same. I’ve gotten used to it. That saddens me. I have mini fevers on and off. They last anywhere from an hour to a day, with all the bells and whistles of a flu, and then it’s just gone. Sometimes more than one a day, especially if I tire myself too much. I have this buzzing in my ears, that is going  24/7. It makes it hard for me to discern different sounds. I have tried to explain that it’s like having an equalizer with all the sliders set the same. My bodies thermostat is BROKEN! One of the first things Lyme does upon entering your body, is it messes with your thyroid. It explains why I suddenly had an autoimmune thyroid disorder out of nowhere. Lyme needs a colder body to thrive in. (one of the things my naturopath had me do was take my Basel body temperature for a month and a half. I was shocked when I charted my daily temps to find that sometimes my body temp was so low it didn’t even register on the chart she gave me!) One of the best ways to kill Lyme is hot detox baths. They hate that, but don’t do it for too long, or you will get dizzy, sick and feel worse because of the Herx reaction….ask me how I know.

My cognitive issues got really bad between October and late November. My words would slur, I would forget words, or the wrong word would come out in its place. My short-term memory is shot. Doing one load of laundry now takes me an entire day to do. Following a cooking recipe is a nightmare at times because I can’t remember where I am in the recipe if I get distracted in any way. Even taking my supplements, I line them up and put them away as I take them or I forget where I am in the list. It makes me feel like a failure as a mother and partner, because of my post adoption brainwashing of “I’m not good enough”  Things that are second nature like driving are difficult. For example, I was driving to a friend’s house one day and half way there I forgot where I was going. My mind went blank. It was really scary. I was alone, but I stayed calm, slowed down a bit, and as I rounded the hill I remembered where I was going. I’ve gotten in my truck and sat there not remembering how to turn it on. I have turned it on before and not remembered how to drive. I have forgotten sometimes where my lights are, or how to turn the turning signal on or off. Needless to say, I stopped driving when my symptoms were that bad. My naturopath prescribed me a supplement to help with my cognitive function, and although it helps, it scares me that it’s usually given to people with Alzheimer’s. I am a shadow of my former self, but according to my family Dr, I don’t have Lyme.

I’m so grateful for my naturopath, who has been my rock through all this. The one drawback is that she is completely out-of-pocket, and I am now thousands of dollars in debt. At one point during the October-late November nightmare, I was actively suicidal. If this was going to be my life, I didn’t want it. I figured, my family would be better without me. When I thought about my son, I thought, he’s happy where he is, I am insignificant. He’s not going to care if I’m gone. I look back now, and can’t imagine I felt that way, but I did. I’m doing so much better than I was, despite my long list of symptoms.

In late November it was decided I would do another round of antibiotics. My escalating neurological symptoms were making it obvious that my condition was worsening. I had nuked the spirochetes the first time I had done the antibiotics, but some always remain because in this corkscrew like state, they burrow into your organs to evade the antibiotics. (Lyme is the relative of Syphilis) Well, when they figured the coast was clear, they came back out to play and started breeding. The cyst forms of the disease, not to miss out of the fun, turned back into Spirochetes and flooded my brain. In the space of a month, I got very sick, very fast. I started the antibiotics the very next day. Within three days, it was like night and day. Now don’t get me wrong, the side effects from Doxy are a nightmare in and of themselves. Crippling nausea, headaches, thrush (which on top of my lichen planus was exquisitely painful!), itchy skin and because of the high dosage, extreme photo sensitivity. I was glad it was fall, and it wasn’t as bright out. Even being outside for 20 minutes though, on a clear day was enough to give me a chemical burn on my face. I got through it though, and all in all, even with the side effects, it was worth it. I was on them for four weeks. I finished them right in time for Christmas. I was able to spend Christmas relatively symptom free. I felt like my old self again.

I was able to take my daughter on a three-day trip to the city. I was able to remember everything I needed to (despite having everything written down in case I didn’t). I walked everywhere we went, and I remembered which bus went where. I had a hot bath every night to keep my muscles from freezing up, but other than that, I did so well! It restored so much of the confidence in myself I had lost. I had such great hopes on what the future could look like, and I was excited. On January 1st of this year, I did something incredible. I read and finished a book. I remembered the plot, and characters. It was the first book I had been able to read for a year. Before Lyme, I was an avid reader and always had a few on the go at once. It’s these little things I celebrate now. They are now my big things.

Writing this all down has been really exhausting for me. I have to take long breaks between writing, and the more tired I get, I lose my focus again. I can’t put it all together in my mind like I used to, but I’m trying really hard. My symptoms are starting to return.

One of the most triggering things for me in this journey has been how I feel a Karmic upheaval of feelings that I felt during and after my sons adoption coming back up and bleeding through my experience with Lyme.

  • I’m being told it’s “all in my head”
  • I’m being told I should be “over it” (because I’ve already had the recommended dose of 2 weeks worth of antibiotics)
  • I’m being told that my symptoms are not what they are (even with a positive test) because my Dr “knows better”
  • I’m being told that despite me reporting constant, unrelenting, aching in various parts of my body (my hips and lower back I compare to back labor) that “It’s not that bad”
  • I’m being told Lyme doesn’t exist where I live. (despite LOTS of evidence to the contrary, even the local vet says it does.)
  • I’m being told, “Here take this pill, it will make it all better”

It’s all very triggering to be called in not so many words, a liar. It has the same echo that “ambiguous loss” does, in the non adoption community. Unless you are affected by it, you just don’t get it.

you'll never understand

I have had several posts on the go for months now, but I had been unable to finish them due to my illness. My goal for 2016 is to get them finished at least, and if I can, I will add to my list. I can’t make promises I will write regularly, it depends on how I’m feeling, but I’m going to try. Stay tuned!

Advertisements