No luck

Well, the Lyme test was negative. This means I am still on the hunt for whatever is causing the infection in my heart. I have a few other ideas but will just have to be patient.

In the meantime, my emotional problems are beginning to take over my entire life, and I have recently realized I am in the middle of a fibromyalgia flare up. I have noticed an incredible increase in fatigue but that could be due to any number of things. It became very apparent when I helped clean up some branches and leaves after my dad trimmed up some hedges in my front yard…it was very light work, but I ended up in so much pain later that day and was even worse the next. It was so severe that I had to hide in the bedroom while the boyfriend and I were supposed to have company. I felt so terrible. In addition to my usual tense muscles, I had some extraordinarily tender areas (mostly chest and left hip) and numbness/tingling/pins and needles in my left hand/arm. I have been experiencing that last bit more and more frequently, and I notice my hands go numb now if I decide to read in bed. I am trying not to be too alarmed at this but it worries me with whatever is going on with my heart.

So…my doctor has made some massive changes and I will probably be undergoing a lot of uncomfortable adjustments over the next few weeks. He has prescribed me Cymbalta, which I have not had before. I have had terrible luck with other antidepressants, at least SSRIs and Wellbutrin, but I will give it a shot. It’s supposed to work for depression, anxiety and fibromyalgia so we will see if it helps any or all of those things. Sounds nice, if it works.

Because of the possible interactions of Cymbalta with Flexeril I have been switched to another muscle relaxer: zanaflex. I have no experience with this, but hope it works. Also, we are finding that one of my supplements does appear to be helping out my thyroid so I am cutting down my dosage of thyroid hormone which is nice. I was also briefly put on Losartan and now going off it, which is fine by me because it made me incredibly sensitive to sunlight. I found myself with sunburns when I typically don’t burn easily.

I feel so scattered and unfocused so I apologize if it comes through in this post. I have been feeling like I am losing my sanity. I have had moments where I feel so disconnected from me and who I am, typically when my boyfriend needs me to be emotionally present… and I just can’t be bothered. I just sit there, eyes open, not caring… I know he needs me to reach out and touch him, or tell him everything is okay, but I just…don’t. And it scares me. I feel like my whole being is just somewhere else in those moments, and I am just this human-shaped shell, incapable of caring. I don’t know what it is. All I know is that I really need to get back into therapy, but I just keep hoping for something to slow down. I wish I could just take time off work and focus on my health, but it’s just not possible with my finances.

When I read about Borderline personality disorder, I felt like I was reading an autobiography. There are a couple things that don’t apply to me, but so much of it does. I am not diagnosing myself, because I just don’t believe in that, but I believe that this is a breakthrough moment for me. I have always read a lot about psychology and never, ever thought I could be someone who suffered with a personality disorder. Why was I so quick to embrace the possibility of other emotional issues, but deny personality disorders? I guess even in the stigmatized, there are stigmas. It felt too “permanent” maybe, to me before. But now it is something to run past my therapist and get my shit figured out. I am so tired of living like this. It’s a shame my emotional issues had to go into full speed when everything else did, too, but I guess it’s all connected. Coming off depo and allowing PMDD to rear its ugly head was one of the worst decisions I ever made, but I didn’t realize I had that issue in the first place until all this started happening…so I guess it could be a blessing in disguise.

My doctor referred me to a hormone specialist but unfortunately, that doctor is not covered by my insurance. I’m on the hunt for another to see what we can get figured out. This is all the updating I have the energy to provide currently…thanks for reading.

Borderline? Maybe…

Well, I have come to the uncomfortable realization that I likely have borderline personality disorder. I have had mental/emotional health issues for most of my life (earliest recalled issues around age six – self-harm which continued into adulthood) though I have never received a diagnosis besides a quick “general depressive disorder” type thing, just to get me on antidepressants, which did not ever work for me – I’ve tried all different kinds. This is important, though, to move forward with bettering myself. Too bad I had to cancel my last therapy appointment because I am just too broke.

I’m in the midst of a huge fibro flare and spent two days laid up because I was doing some light yard work (cleaning up branches; my dad came over to help trim some shrubs and cut down a tree) ¬†and my nerves have been going crazy. Neuropathy is becoming a chronic problem for me now suddenly, particularly in my left hand. It scares me a bit with my heart issues.

Today I should receive the test results for the Lyme disease test. Probably I will update again after my appointment later this afternoon. Wish me luck…

Rough week

Last week was a pretty bad week, but I feel that things are climbing back upwards slowly but surely. I am starting to think I need some medication for my anxiety. I’ve tried just about everything that doesn’t include pharmaceuticals to no avail. I had another panic attack recently, having two of them so close together frightens me. I’ve only had a few in my entire life. I did some reading up on them and it appears that if you leave panic attacks untreated, they can turn into a panic disorder. Well, that’s the last thing I need, really.

I took some klonopin a friend had given me to get me through a couple stressful social events and feel like it really helped me relax and act like a normal person in a social situation, something I have never experienced before because I am soooo used to freaking out in situations like that. I typically just shut down and don’t talk, mostly because I fear saying the wrong things, or weird things, or not having anything interesting to say, etc. I always assume people will be bored or irritated by me. So it was nice to have a sort of normal experience. The only thing is I think it messed with my memory a bit, which is already a little suspect with my brain fog and whatnot.

My homework for myself lately has been reading up on being a toxic person. Previously, I had read up on other people being toxic but never thought about the fact that I may be toxic as well. It explains a lot about the type of people I attract, both in relationships and friendships. I never thought about myself as toxic because I felt it was all about intent. I try to avoid making anything personal, even in arguments, not dragging out peoples’ shortcomings and throwing them in their faces, etc. BUT I realize that my (negative) feelings are so palpable that they suffocate the people around me when I am in the midst of dealing with them. I realize how painful and draining this can be for others because I grew up in a very volatile situation, though I think I was more afraid of my father when he was angry because it could and would easily switch from him being frustrated at some situation that had nothing to do with me or my brother/mother/etc. to taking it out on one or all of us. I became trained to be frightened any time his mood went south regardless of how or why. I don’t want to be like him, at all, so when I hear my anger hurts those close to me even though I am careful to not direct it at anyone, it really touches me and I want to do everything in my power to avoid it.

My boyfriend and I are both battling these things, whether he realizes it or not. Something in my tone of voice will trigger him, and he will fire away at me. Because I am still unaware of these tones in my voice (they do not always match up with how I feel inside) it takes me aback when he starts yelling. I don’t do well with yelling/slamming doors/etc. so then I am triggered and then I start yelling. It’s a downward spiral from there. I end up shaking and crying and he gets so defensive and puts blinders on, not realizing that he has any fault in this as he is just “reacting” to me. I think that is utter bullshit and refuse to take 100% of the responsibility, and we did discuss it last time this happened. He agrees and apologizes for his part. But I still feel like we have a long way to go, because he likes to drag out very personal things when he gets angry and that hurts me a lot. Knowing that he thinks I do not do enough for my mental health especially aggravates me. I do not have enough time in my schedule to fit in more therapy, nor more money. He thinks I should find a provider in my insurance network so it is cheaper and therefore the idea is I can go more often. However, my argument is… it has taken YEARS to find a therapist who works for me. I am not willing to go through the motions of trying out multiple providers again, wasting time, energy and money to find someone who will work for me only to start all the way over from the beginning. It took me many years to find my therapist and I am not willing to give her up. Plus, I rarely even have time to go have “fun”. If I cram all my “free time” into appointments, then my entire life is really just appointments and work. What about my work/life balance? There is no balance there. I still don’t even know what to DO for fun. I have lost that part of myself long ago. My life has become this search for restoring my health or finding a way to cope with all of these things, I have lost sight completely of all the things that used to make me happy, the things I thought were fun. It’s depressing! I am even dealing with a lot of anxiety around the idea that I have to talk about myself at work soon in front of my team because we merged with another company and we are just doing this thing every week where one person from each department will introduce themselves to the whole team, talk a little about the things they like to do, etc. and I am just sitting here thinking… what do I like to do? What will I talk about? “Hi, I enjoy working my life away and fighting to get my life back from many chronic illnesses and mental health issues, so I basically don’t have any hobbies anymore.” I mean really… I feel like a shell of my former self, even more so than when I was really deeply depressed. At least then I was constantly writing and painting.

Tomorrow I finally go back to my doctor and will discuss the idea of checking for Lyme disease, and maybe discussing anxiety meds. I don’t know how he will feel about the last part, since he is a naturopath, but he has been open to prescribing me things I ask for because he knows I won’t abuse it and that I am very self-aware and have done a lot of research about things.

On another note, the medical marijuana card was a great idea. I have found some products from dispensaries that really help me with my pain without getting me high. I got a very potent tincture that helps me with my pain but doesn’t mess me up so I can take it at work. I’ve also found some particular strains that I can smoke when I am at home that help with pain without making me tired or hungry, so I can stay focused and get things done. Aside from gabapentin, this is probably one of the most helpful things I have gotten for myself. I have now just started using Rick Simpson oil (RSO) and I can’t comment quite yet on my experience with it as I just started last night. Supposedly, people have cured various cancers with it and helped all sorts of symptoms from varying illnesses including lupus and fibromyalgia, but I am skeptical. However, I can say I am happy to have found something for me that works, I previously rejected people when they told me I should get my card, thinking all stoners think weed is miraculous and can fix all problems… shows what I know. Hopefully it will be decriminalized on a federal level so I don’t have to worry about being drug tested at work and potentially losing my job.

Anyway, that’s about all there is to report. I’ve still been incredibly fatigued. I feel as though I used up all my energy last year and the beginning of this year, when I bought my house and did a ton of work on it. Now all those projects are half completed and the disarray is making my anxiety worse. I’ve been depressed too, with the PMDD going into overdrive… I always think, has it been a month again already? I need to also talk to my doctor about eradicating my period again which I did for 11 years and didn’t have these types of symptoms. I can’t live with it.

I also lost a pet recently, I have snakes. One of them got sick and I took him to the vet, unfortunately it appears the respiratory infection spread quicker than I caught it because the very next day, he was dying when I got home from work. He died right next to me and I just sobbed and sobbed… didn’t help it was one of the days my boyfriend and I were at odds and he was not there when this happened. We fought all day long and then this happened…and then we fought some more. I need a vacation, pretty damn sure of it.

A little relief

Well, I have finally made it into therapy for the first time in many months. I felt like I could use another two hours on top of the hour I had to discuss everything going on. But I still feel as though I have made a little progress. I broke down a little bit when discussing my heart situation. I have realized I am actually incredibly scared.

I did mention it briefly in an earlier post, but I will recap here because I have a hunch as to what is causing it: I have incredibly elevated lipoprotein a levels. My number is in the three digit range, and healthy numbers are supposed to be somewhere below 40 I believe. I have done a lot of research because of the threat of a cardiac “event”. I want to know what to be prepared for if it comes down to it.

So, my cholesterol levels are great. My good cholesterol is really high, possibly because I eat a lot of fish (I don’t really eat any other type of meat…occasionally chicken but that’s it, mostly fish). So this is not an issue caused by something I am doing. As I was looking at peoples’ experiences with the new supplement I mentioned I was trying (Lauricidin) I noticed quite a few people with Lyme disease commenting. I started wondering, as this is not the first time I’ve run across people with Lyme disease in my searches regarding my health issues. I am beginning to think I could very well have Lyme disease that I could have been living with for over a decade. I was bitten by a tick when I was either a preteen or young teen, and I cannot recall if I had any odd symptoms afterward (the bite was in my ear, not sure if the telltale bulls-eye rash would be visible there, but not everyone gets that rash, as far as I have read). Other symptoms are similar to flu/cold symptoms so likely I would not have noticed, as I was frequently getting sick.

So. In my research, I have found descriptions of Lyme disease that has progressed far enough to involve the heart. It can also cause arthritis-like symptoms in major joints, particularly the knees. This interests me because I have had issues with my knees throughout my teens and up to my current age. No one has been able to figure out why my knees get swollen/fluid filled and I have been tested for rheumatoid arthritis, tests turned up negative.

It would also explain my immune system suppression. *Something* is actively suppressing my immune system, making me very vulnerable to illness. I’ve also just received some troubling results in my bloodwork regarding my liver, which could be related to this issue or to the chronic active Epstein-Barr virus, since I did recently go through a flare up of that.

My extra thick blood could also be blamed on a long term unchecked Lyme disease infection. Not to mention my chronic fatigue, but CFS seems to go hand in hand with just about every condition I have been diagnosed with so far anyway.

I was trying to make an appointment with the doctor who is supposed to be very good at finding hidden infections, but she is booked until December. I do not feel as though I have that much time. With my lipoprotein a levels *so* elevated, I feel like a heart attack waiting to happen. This terrifies me. I have been through so many diagnoses in my life, but this is the first one that is an active threat to my life. I am only 30 years old. I do not know how to process this information.

To make matters worse, I have told only a handful of people about this situation, but it does not seem as though anyone understands the gravity of this situation. It hurts so bad to think that the people I feel closest to do not have any concern for me. I had a panic attack the night before last just thinking about this stuff. I have not felt such despair in many years…the feeling that no one cares about whether I live or die is something I used to be very uncomfortably familiar with, but it has been over a decade since I felt that way until recently. I am feeling sorry for myself, which I hate, but I am lost here. I do not know how to navigate this territory. I am scared. It sucks to admit that, because I have been so stubborn and stormed through all kinds of trouble in my life, but to admit I don’t know what to do just terrifies me to my very core.

I’ve worked hard in life, I have accomplished a few things I never thought I would get a chance to, and I am proud of that. But I am not done. I do not want to kick the bucket just yet. I have so much more to do. I want to thrive, not just survive. I am done crawling through life… but I just feel like I can’t enjoy anything lately. I have forgotten how to have fun. I thought I got out of my depressive phase but I have not. I am still in the thick of it.

I am waiting on a call from my doctor to discuss thyroid test results since we have not tested my thyroid in a couple years. I want to make sure my medication is working. When he calls me, I will tell him my theory about the Lyme disease thing and see if we can do some more testing. I am actually hoping it IS Lyme disease, as then we would be able to move forward with a treatment plan. If it is not, then it’s back to the drawing board…and as mentioned previously, I am sick and tired of being a medical mystery.

I need some answers, some relief, a deep breath and a hug.

I’d love to hear from anyone who has or is battling Lyme disease, particularly if it is Lyme with cardiac involvement. I need to know if there is hope!

New supplement to try

Have any of you ever taken Lauricidin? My doctor recently suggested I start on it as a long term thing to attempt to help battle the Epstein-Barr virus. I just ordered some on Amazon and started today. I was told to start slow and work my way up to a full dose, and from what I read, it is to avoid the Herxheimer Reaction (which is something I experienced while treating the parasitic infection I had – the die off of the parasites was happening quicker than my body could flush out the toxins, which resulted in waking at 4 or 5am covered in sweat, with terrible stomach cramps and high fever…would like to avoid ever feeling like THAT again). I am reading some promising things on Amazon but would like to hear from others if anyone has anything to share. I hope this helps me.

Still trying to track down what is causing all the signs of infection/inflammation in my bloodwork. I’ve finally come out of a depressive phase with extreme stress/anxiety and can try to get things done again. I emailed a doctor who my doctor referred me to who is supposed to be really good at nailing down causes of inflammation in the body. He’s stumped. I’m glad he did make a lot of progress with me, because it was SO overwhelming for so long to just hear doctors continually call me a mystery or a “complex case” but not make any progress!

I also just got my medical marijuana card in the mail yesterday. Looking into making some salve with cannabis oil for my muscle tension, pain and the painful cramps I get with PMS. I’m new to all of this so I need to talk to someone at a dispensary about what strain(s) would be best for my conditions. I just find it all fairly intimidating, especially with the spike in anxiety I was feeling.

The sun came out for a little while today and that certainly helped improve my mood and energy levels. My boyfriend and I had a great talk to the other day too after another fight left us both in tears and I think we are getting to a point where we understand how to properly support each other. We both come from a background of abuse and trauma, there is a lot of pain in both of us. Our issues had been pushing each other apart instead of bringing us together like it should. I’m feeling better about things.

I had decided to go back to therapy also since my therapist told me she would do sliding scale for me once I discovered my out of network deductible is too high for me to ever meet in a year ($4500) meaning I was paying $220 a month for therapy which I just can’t do with my really high mortgage I am paying on my own and all my other assorted bills, loans and healthcare costs. Unfortunately, she can’t afford to see me for what I can afford so I might have to wait until I can spend more or hopefully we can work something out at least for one meeting a month. She’s still only working two days a week (recently back from maternity leave) so we’re both having financial struggles at the same time. At least I am starting to feel more stable though I haven’t seen her in a few months. And even then, I’ve barely seen her for the past year because of how long she was on maternity leave. Maybe I am doing better than I thought.

Hope everyone is doing well!

Anxiety through the roof

I don’t know what is affecting me lately but my anxiety has been sky high for the past few weeks. I don’t know if anyone else is like this, but basically I keep this ongoing list of things I need to attend to in my head (this can be as simple as going grocery shopping, responding to an email, etc. to something much bigger like…well I don’t know, scheduling something that’s super important) and if anyone tries to push me harder to attend to one of those things on the list, the more it overwhelms me. And that’s where I am at right now.

I think part of it is financial stress. I was lending money, more than I felt comfortable, to my boyfriend and this was stressing me out… but I felt as if I *had* to keep doing it. He’s paid me back all of it and a little extra and I feel a lot better now, but there is still this weird looming anxiety over me. There’s a lot going on but there is always a lot going on. Part of it may be the newest labs. I don’t really know. But now that the boyfriend will be on his own financially, I am able to focus back on my priorities. I am living beyond my means at the moment which is always scary. I just bought my first house in November and now I’m housepoor. I’m continually paranoid that something will happen to my job or something worse will happen with my health and I’ll lose everything I worked so hard to get. It’s hard not to think that way when I just watched this happen to a friend (who eventually passed away in October after losing his house and going bankrupt by medical bills).

The past couple weeks have been particularly difficult as adjusting to hormonal medication is never easy and with everything else going on, I’ve felt like tearing my hair out. I had a bad argument with my boyfriend and I’ve lost all patience for conflicts like that. There is nothing productive about casting blame, raising voices, etc. so I just gave up and said “I’m done” over and over again. He took off for awhile and I had some time to think about whether or not I cared if everything just ended right then and there.

Frankly, I am used to going about life on my own. This makes it difficult to let people close to me. Also with my history of letting the WRONG people close to me, I do worry about making those choices again. I love him, but I don’t *need* anyone. It sounds even more cynical now that I have written it out… but honestly this is how I feel. I have such little desire for this kind of drama. I have no energy to dedicate to it. So now added to my long list of “to do” items is to have a serious discussion with him about who I am and what types of things really strike nerves that I’d rather not be struck. While he and I originally met over a decade ago, we didn’t truly get to know each other until recently, specifically the past five months. He’s new to dating someone with chronic pain/illness and some incredibly insensitive things have been said. I lost my temper. I really feel at the end of my rope lately.

Perhaps related, twice in the past couple weeks I have noticed some extreme flushing of my throat and chest. This is new to me, so I don’t really know what’s causing it. Perhaps the stress/anxiety is getting so bad it’s causing my blood pressure to rise? I’ve almost always had low/low-normal blood pressure. But I also fear things may be different now that I have received these results in my labs with the incredibly elevated lipoprotein A levels… I am talking completely out of my ass here, because I don’t know enough yet about how/why these levels are SO high. It scares me though, because I have a few items in my labs that point to increasing risk of developing blood clots, stroke or heart attack.

I feel quite a bit out of control of the situation, as my cholesterol levels are fine. There doesn’t appear to be much I can do about the way things are right now. Also, I think I have experienced a flaring up of the Epstein-Barr virus. I think I noted in a previous entry that those levels were higher than normal on my latest labs as well. For the past week and some change, I have had an extremely sore throat, swollen tonsils and pus on my tonsils/back of my throat. A doctor I saw was so convinced it was strep throat that I was given antibiotics before the culture results came in. When they did, it was negative for strep and determined to be a viral infection.

I’m starting to wonder if I should just push to have my tonsils removed. I tried years ago but now a couple practitioners have tried to steer me away from that, saying the risks outweigh the possible benefits.

Yesterday was a bit rough but I ended up meeting up with a friend I haven’t seen in years who was just recently diagnosed with fibromyalgia and chronic fatigue syndrome. I talked to her a lot about treatment, symptoms, etc. and let her know I’m here any time she needs to talk, because I GET it. If I could just find a job being some kind of advocate for people going through these things, I would be SO pleased. I just really want to help people so even if it seems I have made at least minimal impact, I’m happy about it.

I’ve exhausted myself just typing this entry… more at another time. If anyone has favorite stress relieving tips, I would love to hear them!

Active Epstein-Barr virus

One of the troubling items I have noticed in my blood work over the past year is a fluctuation with the Epstein-Barr virus. For those who are unaware, this is the virus that causes mono. I had mono when I was 18 or 19 and usually what happens is the virus goes dormant, but will show in blood work. However, the levels have changed over the course of three or four different blood tests which suggests this virus is still active. Does anyone out there have any experience with active Epstein-Barr virus? I’ve read some things, but you know how reading about medical stuff on the internet can go. I don’t want to induce a panic attack for no good reason. I am wondering though if this is to blame for some of my fatigue and maybe some of the other indicators of infection in my labs. There are a few things pointing to inflammation or infection in my body that my doctor and I have yet to nail down. So, anyone with any information out there for me regarding Epstein-Barr?