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!

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!

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.

3/14/13

I was thinking a lot today, and I really feel I have made some astounding progress in the past five years. Five years is the marker because that was when the car accident that changed my entire life occurred. This has forced me to push myself harder, take care of myself and learn to live with things that I have no control over all at once.

I have a very long history with severe depression, have struggled with alcohol, been homeless and have always had a weak immune system. I never had much going for me it seemed, and it took a long time to learn to even respect myself.

Five years ago, I was living alone in a two bedroom apartment. I had a good job. I had, for the most part, removed alcohol from my life. I would go to bars and clubs and not drink, mostly because I was very strict with my money (having come from not much of it!) and didn’t trust myself, either. I never did quit drinking completely (there were a few years I did go completely alcohol-free), but I have learned where to draw boundaries, and I absolutely loathe the feeling of being drunk now.

So, while it seemed things were looking up, I still somehow had ended up with shingles. I was only 24 and didn’t think I was dealing with a lot of stress at the time. I was still healing from that when the car accident happened.

“The Car Accident” has been a phrase I have been used to repeating over and over again in the past five years. Probably to other people it doesn’t signify much, but to me, it’s such a milestone. I have to assume other people imagine I am over dramatic about it but it really did change everything, for better or worse. Both, really.

I lost my job after this accident, of course I was injured badly (nothing obvious or visible like broken bones) and had to remain on bed rest for about three months. I wanted to go back to work. I was tired of laying around by myself, suddenly becoming very dependent upon others. I couldn’t even manage to go grocery shopping by myself, it hurt too much to lift a bag of food. I fell into a deep depressive phase while I waited for life to get back on track. After three months, I did return to work, part time by doctor’s orders. This put me right in the line of fire at my workplace. They were going through round after round of layoffs, and this time I was let go, because I was not as productive as the others.

Of course not.

I had already been fretting over how to pay my bills when I was on bed rest. This made things worse. Luckily one of the first things I did was go to my credit union and apply for a credit card. I was approved and this was how I paid my bills. It took forever for insurance to pay out for personal injury protection and my unemployment was not much. I scanned job listings day after day, only to become more depressed over the fact that I couldn’t seem to find anything I could *physically* handle at all.

I was a previously independent person trying to make due relying on others and being out of work. This was a difficult lesson to learn, learning how to ask for help for the first time in my life since childhood. However, it’s an important thing to learn in my opinion, so I have to say learning how to ask for help has become a benefit in my life now.

Regarding my depression…this comes from my turbulent childhood, living with an abusive alcoholic father, as well as a big dose of anxiety. I’ve been in therapy on and off for many years, but due to changing employment situations and lack of insurance, I had a hard time sticking with it. There doesn’t seem to be a large amount of help for unemployed or uninsured people struggling with mental health issues unless they are homeless, addicted to drugs, hardly in control of themselves, etc. Not that it is not important to help these people, but people like myself seem to be viewed as “doing okay on your own” and dismissed by these organizations. That was my experience, anyway. I have had very terrible therapists and some great ones, but last time I quit seeing a great one was because I suddenly received “pre-existing conditions clause” notices in the mail from my insurance at the time. I had already racked up about $4000 in visits by the time insurance notified me they would not cover me. It seemed so callous and cold to deny someone with mental health issues simply because they’ve had a history of them. The medical system can be a very disappointing and frustrating thing to deal with.

So after losing my job and being still too injured to just apply to every job I could find, I then had to worry about insurance, how to care for my injured self without breaking the bank that was already pretty much broken. Car insurance covers a person injured in a car accident for a maximum of one year, regardless of the issues. It would be up to my lawyer to go for the rest of my medical costs. Of course, there was another lesson to be learned there, as well. I was bitterly disappointed in my choice of lawyer after three years passed and the settlement was finally in my hands.

I made a huge decision when the car insurance stopped covering my medical bills. I promised myself that it was worth it to continue to receive care, even if I had to rack up debt. The savings I had was drained to pay for my care and my basic bills. I did not care, or tried not to, because I knew I owed it to myself to finally learn to love myself. First I would learn to do so by physically caring for my body. The harder part came later when I had to make peace with myself emotionally and mentally.

I don’t think there has been more than two weeks that have gone by without at least one appointment related to my physical or mental health care in the past five years. Many times I would become overwhelmed with how demanding this schedule was. Mostly now I deal with it well, because I have a car now, which makes it a million times easier to get from point A to point B, especially when my practitioners are spread all over the city and into the suburbs. Doing all of that on the bus was very difficult.

It took three years for me to finally land a full time job. I was so grateful. I finally felt I could get back on my feet, get insurance, take care of myself. Of course, no… the pre-existing conditions clause kept me from being able to utilize my insurance for almost all my problems until a year had passed. I had to pay for insurance I could not use for one year before I would qualify. This was very upsetting. By this time, I had definitely come to notice my full time job that I was ever-so-grateful for was too stressful for me. The job itself was fine, but the environment was not. People I worked with were incredibly mean because they were under stress. I was in a position that allowed them to feel okay looking down on me and treating me accordingly. I had to get out of there. My headaches were becoming more frequent, tension was at its all time high in my muscles and I suffered my one and luckily only migraine there. I noticed myself snapping at people and in general being a not very nice person. I was of course very downtrodden most of the time and I am not good at hiding my moods. I was, in short, a very miserable person to be around.

I ended up applying for other jobs, and surprisingly, it was the one that had no open positions that I ended up snagging. I was so desperate for a new job that I emailed my resume and cover letter to a company that sounded like one I would enjoy working for. I was right, and still work there today. My insurance coverage started with them after my first 30 days of employment. I was extra grateful for that, and even better, it was the same insurance I had at my last job that I could not use…only now I was free of the pre-existing conditions clause.

This is really where I started putting in all that I could into myself.

I worked so hard at my job, and it was recognized. My manager has been very flexible and understanding with my schedule and all my appointments. I went to every single specialist I had wanted to see but was prevented from seeing before. My schedule was completely packed with my new (quite demanding) job and all my appointments. I’ve been in therapy now for awhile, the longest I have seen one therapist ever. I’m off pharmaceuticals for depression. I’ve gotten new diagnoses, things that probably have been with me for many years, and now that I am receiving treatment I DO see and feel a difference. I am still very exhausted, but my journey has really only just begun.

I feel that I finally can look at myself and see the potential I have. Instead of constantly belittling myself, I see how intelligent I am, how well I can handle difficult situations and how much I have accomplished even against very bad odds. I think to myself what an amazing, unstoppable force I have already been, even when I just wanted to sleep all day, just give up. I can only assume I will be able to finish every task I set out to, especially once my issues are properly managed.

On top of it all, I have a wonderful partner who understands why I have no energy to handle household chores often, who always handles them without begrudging me. He’s learned a lot and grown too over the years and although I have accomplished nearly everything worthwhile in my life on my own, it is a breath of fresh air to have someone stand by my side and truly understand me and what I have gone through, and am still going through. He’s changed, I’ve changed, we’ve changed. It’s a wonderful thing to reflect on.

I almost feel as if I owe an apology to anyone I have met within the past five years; I feel as though I should say that was not me they met, but a shadow of me, someone overburdened with things they did not understand or know how to handle. As a result, I know I was unpleasant to be around at times. But with a lot of work in therapy, a lot of harsh self-reflection, a lot of kind self-love and treating my body with the best healthcare I can find, I finally feel as though I am becoming the person I know I could be. It sounds so cheesy but here I am thinking this way. When I think back on my past, it seems just short of a miracle.

I have a lot of wonderful friends who have walked beside me as well, and I have learned what kind of toxic relationships to watch out for. I secluded myself a lot in the past couple years, mostly so I can finally focus on me and get where I need to be. It’s an easy way to see just who does care enough about you to keep in touch. I am not the most open person normally, and would not type all of this out if it were not anonymous, but seeing that I truly have friends who love me and care about what is going on in my life is worth so much to me. Learning who to cut out of my life was hard but beneficial. I am very sensitive and typically put people I care about before myself. I have had to reverse that in the past two years or so just to get where I am today. I try to be there for people I care for but know where to draw the line so I don’t exhaust myself. If I don’t take care of me, how can I take care of others?

I’m not going to say life is perfect, because there are still days where I really struggle with the pain, or the depression, or just the idea of how much has changed and how much work there is left to do. But I will say I am grateful for all the lessons even though they have been incredibly harsh at times. I’m finally the one in control of my destiny instead of standing by and just letting things happen. I feel empowered by that and hope that I can keep this strength for the rest of my life.

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.