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!

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?

Trying to be more active again

So, I have been posting quite a lot lately because I am trying to get this blog back off the ground again. I went many months without updating due to some major life changes, but really feel like I lost the small handful of followers I did have. I want to get people involved again. One of my goals for this blog was to kind of provide sort of a loose knit support group for people going through similar things. If you know of anyone who may benefit from such a thing, let me know. It can be incredibly alienating and lonely to deal with chronic illness(es).

I also am still looking for guest posts. You can remain anonymous much like I do, or whatever you feel comfortable with. I want to provide a platform for people to share their story, vent, reach out to others, or whatever you need/want to do.

For anyone new to this blog, my first post is here and sums up (for the most part) the issues that I struggle with, mainly fibromyalgia and chronic fatigue, but this post is a good introduction: The Beginning of a Long Journey

I have been considering throwing together a list of helpful practitioners as well, and while I have not even revealed where I live, I would be interested in receiving names of any practitioners all over the US and perhaps even in other places in the world just so people who stumble on this blog may have a helpful resource to refer back to. If you’re anything like me, it took many years and a lot of trial and error to find a helpful team of practitioners to manage your illnesses.

I will try to be more present now that I am in a stable living situation and have a lot more time at home to dedicate to this project. Let’s get some conversation going.

Thyroid dysfunction

http://w3.newsmax.com/newsletters/brownstein/thyroid_video/video3.cfm?promo_code=12E4B-1

This video is long but very important, this is coming from a person who experienced many symptoms but went many years without my thyroid issue being diagnosed, because, as mentioned in this video, my previous doctors only checked TSH instead of  a battery of other tests that would have identified the issue. If you suspect you may have a thyroid dysfunction, please watch this. It mentions symptoms, including swollen tongue (do you see the outlines of your teeth on the edges of your tongue?) and others including fatigue, weight gain, sluggishness, etc. Be your own medical advocate, demand the tests they suggest in the video if you do suspect you may have an issue with thyroid function. It can change your life. My body temperature was only 96 degrees which was an obvious sign something was wrong. My Raynaud’s has been better, I feel like I am a normal person as far as temperatures go now. Still struggling with fatigue for other reasons but this could help a lot of people out. My advice would be to ignore the sales-pitchy sounding free stuff offer and just pick the important info out.

Today

The sun has come out and it puts me in a pretty good mood. Luckily, I have another reason to be in a good mood as well. The past two days I have been virtually pain free compared to the past five years… today is off to a good start as well, so I’m willing to consider it three days in a row. I still have some minor aches but I will take those over how I typically feel. The only thing really plaguing me now is some severe fatigue in the mornings. I feel more energy during the day than I am used to, but in the mornings, it actually seems to have gotten worse somehow. Also, I was pretty fatigued all through the weekend last week. My boyfriend reminded me of the battle going on inside my body; no wonder I am so tired. The antiparasitic regimen I am on may be taking its toll on me since those drugs are pretty harsh, plus the bugs are going to fight back as hard as they can. Of course this is exhausting, especially with the other stuff going on. I kind of wish I could take time off work for the length of this antiparasitic regimen but that’s just not possible.

At any rate, the past few days have been pretty okay except for the mornings. Not sure what to do about that, but happy to be feeling better the past few days anyway! I think I have a few weeks left on my antiparasitics and then hopefully they’ll be gone for good, this being the third attempt to get rid of them. Wish me luck 🙂 Hope you are all doing well!

Sleep…how can something so essential be so elusive?

I have had trouble with sleep for most of my life, at least as far back to my teenage years. Of course everyone thought it was because I was a teenager that I wouldn’t feel rested until I slept into the afternoon, and when I felt so exhausted every school day, I thought I just wasn’t a morning person. Later in life, this led to drinking caffeine daily just to be able to focus on my work and even got so bad that I was nodding off at my desk sometime before my car accident, probably when I was 23 or 24.

I had insurance for the first time in a long time, so I went to see my doctor to complain of this fatigue. She insisted it was something I could change in my lifestyle, that perhaps I was going out late at night and partying or drinking caffeine too late in the day. I left feeling very frustrated, but I was insured by Kaiser then and couldn’t see any doctor outside of there. I found a website for a sleep center that looked promising, but had to just keep it in the back of my mind until I had insurance that would pay for a visit there.

Finally, when I was 27, I had a job with insurance that would allow me to see the doctor at the sleep center. I certainly hadn’t forgotten about it. This sleep center did not require a referral from a general practitioner so I was free to make an appointment for a sleep study.

When I met with the doctor, I was surprised at how laid back he was, and how he asked me some questions and sat back and said, “I think you know what you have, you just need someone to say it.” so he asked, “What do you think it is, I’ll tell you if I think you’re right.” I said “It’s probably sleep apnea.”

“Bingo.”

I was set up for a sleep study to verify our assumption and it turned out I have fairly severe sleep apnea. I never would have known that apparently I do snore, snoring can be silent, but apparently snoring was picked up in my sleep study. I’m not overweight nor are my tonsils too large. But here I am with this diagnosis. I went through a second sleep study for titration, to figure out what settings to apply to my CPAP machine. I went home with my machine and all was well.

For about a month, I felt refreshed every morning, but there was a lot of pain in my chest and stomach. I was swallowing air. My body just couldn’t get used to the air forcing its way into my body at night. I was switched to an APAP in order to slow down the air swallowing. Eventually I ended up in another sleep study, because after that initial month, my fatigue came back full force. My doctor wanted to rule out any other sleep disorder. Also, I was still swallowing air. I ended up on an Auto BiPap, probably one of the most expensive machines out there, but the air swallowing problem went away with this final machine change.

I’d also had problems finding a mask that would work for my rather small face and features. Doesn’t seem there is anything that quite works right without a lot of air leakage or on the other end of the spectrum, things tight enough to not leak would put pressure on my face and head and create a lot of damage in some cases. Currently I am using a mask that rubs the inside of my nostrils raw but it doesn’t leak so I just try to deal with it. I’ve been through probably ten masks.

I’m now 29 and I’m still exhausted on a daily basis. I know I feel even worse (which some days, doesn’t seem possible) if I don’t use my Auto BiPap machine but I am anxious to feel better.

When we ran out of ideas/options, I was then referred to the chronic fatigue/fibromyalgia doctor I am seeing now.

I am happy to report that after only a few days on all my new medications and supplements (five new medications, four new supplements), I have now had two nights of actual, deep, uninterrupted sleep. This is mind blowing to me, because I was used to a life of tossing and turning throughout the night. I thought this was NORMAL for many, many years! I could not wrap my mind around the fact that healthy sleep involves pretty much being dead to the world all night. Who knew? Certainly not me.

So, while two nights of uninterrupted (except by the incessant mewing of the cat this morning) sleep is a good sign I am moving in the right direction, I am still waking up feeling tired. I hope this goes away with more time. I am hopeful again. It’s a nice feeling.