I mentioned in a few previously blogs I have been sick for a while and my doctor doing tests. This is about my illness, and it's a pretty miserable blog post, lol. Mostly bitching for my own benefit. Makes me feel better.
How I feel physically day to day:
God awful pain in my bones and joints. The other night I was walking back from a class, and each step I took felt like my leg bones were breaking. I cried the whole way home. -.- Heat, cold, advil, tylenol, etc don't help. It's all over, and it's random-- some days I have almost no pain, other days everything hurts so badly. Only thing is that it's almost always bilateral.
I also have extreme fatigue, which really sucks. I get 9 hours of sleep a night, wake up, and fall asleep again for another 6 hours, wake up and eat, and immediately fall asleep again. This past weekend there were some days I was away for about 5 hours total. It doesn't matter what I do-- if I go out somewhere, I fall asleep in class, in a restaurant, at a friend's place, sitting up at my desk. Caffeine does nothing.
My body does weird shit where I feel like I'm having a panic attack, but I don't think I am. Everything I read about panic attacks mentions the emotional response of fear you are about to die/terror/being so upset. I feel like I have the biological markers of a panic attack without the mental feelings. I could just be sitting down doing nothing, and all of the sudden my heartrate speeds way up, I get light headed, and short of breathe. My response is mostly wtf. It goes away again after about 10 minutes, but it's obnoxious.
I also get a lot of auras. I only have migraines about every 2 months, and I've only had a seizure once years ago from ODing on caffeine in addition to not sleeping for several days. I get the auras without connection to my migraines a lot though. A sudden feeling of disconnect from your own body and the rest of the world (like being underwater sort of? floating feeling, everything is far away and muffled idk how to describe it better).
Been sick like this for over a year now. At first my doctor would just tell me I had the flu or something stupid, but then I got extremely ill a few weeks back and she did bloodwork, which revealed a lot of weird stuff (low platelet count, high inflammation, weird stuff with my liver, etc). She did tests for stuff like mono, lyme's disease, hep a/b etc.
Anyway, I also have a nasty history of autoimmune diseases in my family, mostly on my maternal side, but also paternal. Seronegative Systemic Lupus, Vitaligo, Type 1 Diabetes, Hashimoto, Rheumatoid Arthritis, Sarcoidosis, Fibromyalgia, Sjögren's Syndrome. These diseases are spread out through my family in everyone from my little brothers to my mom and dad, both grandmothers, my mom's twin sister, and several great aunts, my great grandmothers, and multiple cousins of mine. Pretty much everyone. There might be more but that's the gist of it.
So I have a referral to the Rheumatology department here, but the first appointment they have is in February so in the meantime there is nothing anyone can do for me really. In the mean time, we are just going off the assumption I have the lupus that my mom's twin sister and some of my cousins have because my symptoms are exactly the same, and I don't really match some of the other things we have looked at. Ultimately though the Rheumatologist has to make the diagnosis.
Apart from the fact that feeling like such shit from day to day makes it hard to complete my school work and my work work, it's taking a really heavy emotional toll on me. It's so frustrating to not be able to do something physically that I want to do. This past weekend was my birthday and I just could not really celebrate with the friends who were visiting or around because I felt so bad.
It's even worse because it has flare ups and remissions. I never know when I'm going to get really ill, or feel fine. Once I'm sick I have no idea how long it will be before I feel better. Overall I have gotten progressively worse over the past year, and there's still no active way I have found to help myself feel better. I just have to sit and wait basically whenever I am ill. This makes me feel really helpless about it, and I feel discouraged about keeping my jobs and continuing school when I have no idea how well I will be tomorrow.
It's also really hard because I LOOK well on the outside. I haven't lost tons of weight, or have my hair falling out or anything. I'm 20 years old, and in pretty good shape, and when I tell people I'm too sick for something a lot of times they just laugh at me and don't believe it. When you are in pain every day though, you adjust to it-- so you don't look like you're in pain unless it's so bad you can't actually walk or something (happens to me sometimes). The tiredness is also really hard to explain to people because they just think I stay up all night and have poor sleep habits because I'm a college student. This is really different. Not being able to physically stay awake is disabling. It's not fixable by more sleep once I'm at this point of already sleeping for 19 hours. I can't just grab a cup of coffee and be fine. It makes no difference for me.
I am further discouraged about my future choices. Most of the people in my family with these diseases have become disabled in a lot of ways by it. My mom and maternal grandmother are really just unable to do most of the things they want to do. They have to stay home all the time, have difficulty traveling, etc. My aunt with lupus is almost completely disabled. She is pretty much bedridden. Since there is no treatment or cure for these diseases, you are pretty much screwed. The only thing to do is manage the symptoms, which in my family has so far been not so successful.
In most of my family it took a really long time to get a diagnosis (as these diseases are tricky). My aunt went to specialists for 4 years before she was diagnosed, and my mom for about 3. Until I have a diagnosis and am able to manage my symptoms with medication, I am so worried about how I will finish school and work. Many people have suggested I take a semester off for medical leave, but that's not nearly enough time.
I may need to take the medical leave because I don't know how I can get through next semester's classes like this. However, the options I have are really depressing me. At this point, I can really only go back home so I can see my aunt's doctors who have worked with some different family members of mine at various times and are familiar with the problems. I also don't think I am able to work full time to support myself, so I would have to live with my parents.
I am incredibly upset by this. My home was abusive when I was little. I was depressed since I was a very, very young child being in this emotional and verbally abusive atmosphere. My father is a conservative pastor, and I do not share his worldviews at all. They cut off support from me for going to a secular college, and only have really been talking to me again in the past year. When I left home to come to school, I was depressed and hated myself, and had an eating disorder. As soon as I got settled in here, even though I had so many different issues to deal with that continued to bring stress and pressure and some depression into my life, I have been a changed person. I actually like myself now for the first time.
I worry that if I return home for any length of time (even a few days with my family often makes me feel really bad), I will only make things worse by being in such a poisonous environment. It is hard enough to deal with the chronic illness and frustration from that without being trapped with people who constantly make me feel bad about myself.
In addition to my parents though-- I worry about being far away from my home, which is now Philadelphia, and my friends and support network I have here. At home I would be extremely isolated, (my dad refuses to get internet, which is my primary means of communication with people, for example), and I wouldn't be able to go do things really. I would just be stuck for who knows how long.
I have to make a decision within a week or two about whether or not I will come back to school next semester. I really don't know what the right thing to do is. I feel like either option has a very high chance of a terrible outcome, really. Either I stay here and struggle to stay on top of things while trying to manage my health issues, or I go home to focus on improving my physical health and become overwhelmed with the emotional hostility and isolation of my parents.
TL;DR: I am so fucking discouraged and frustrated and worried by how my illness is impacting my life.
I'm no doctor but...that just sounds horrible. My first guess was Fibromyalga. If you have a history of it in your family that might be your problem. Stress sounds like it isn't helping; the body will react badly to anxiety and stress. I remember having it (anxiety that is) so badly that I would collapse or even black out randomly. All I can say is hurry and get to a doctor...and get lots of rest. You MUST get rested; this I know!!
I'd give you a hug if I could. But I can't. -virtual hug?-
Just looked up Lupus on Wikipedia... that's terrible. The page says it usually manifests between ages 3-15 though, did you not get any symptoms until just a year ago?
myopia: Huh, I didn't actually know that. I assumed it was normal to get it around this time because most of the women in my family have been diagnosed between 20 and 30 with something.
It is however really hard to tell if some symptoms were already showing up earlier, because I was in a high stress environment during my childhood and depression and stress can have some similar symptoms too.
OmiDeLta: We looked at that but I don't have the sensitivity points and my pain is not in the muscles ever, so my doctor thinks it's probably something else. But it's autoimmune so who the fuck knows, lololol. Thanks for the virtual hug. <333
autoimmune diseases are an interesting concept. the idea of a body at war with itself that keeps itself alive is strange, at least. I myself have red blood cells piling up on top of my skin en masse and somehow it makes me have arthritis at the age of 21 maybe some picard will cheer you up?
If it were me I'd probably try a drastic change in diet like Paleo (see the H&F forum), partly because it's supposed to help with auto-immune and inflammatory stuff, and partly because well, why the hell not, it beats just waiting. :p And it can help just to feel like you're trying something.
On November 11 2011 14:17 SonuvBob wrote: Well that sucks. =/
If it were me I'd probably try a drastic change in diet like Paleo (see the H&F forum), partly because it's supposed to help with auto-immune and inflammatory stuff, and partly because well, why the hell not, it beats just waiting. :p And it can help just to feel like you're trying something.
It won't make an immediate difference, but a lot of smaller things (smaller than medicine) can help manage symptoms. Paleo diet isn't completely insane (basically eat lean meats, nuts, lots of fruits and vegetables and lower or reduce the amount of wheats, sugars and oily foods you eat), although you might still need milk. I know I still need a good amount of calcium because my medications sap it. I'm not actually following that diet, just the basic principles are good as there are some things known to make inflammation worse (especially fried foods) and some that make it better (fish oil.)
I'm really sorry it's gotten so bad. During my second year at Purdue, I developed psoriasis and psoriatic arthritis, to go along with some other pre-existing health problems. I initially saw orthopedic surgeons who didn't diagnose or suspect the psoriatic arthritis (despite me telling them about my autoimmune history) and who kept saying it was just torn meniscii in both knees and they'd get better over time, and then they put me on crutches for the semester. That was basically the worst time of my life, because it didn't heal at all and using crutches is not only a huge burden on a large campus, but my leg muscles atrophied making it even harder. I basically failed that semester and didn't even tell my professors what was happening (I was a huge idiot) and dropped to go home after the semester.
After I went home, I saw a rheumatologist and he connected my autoimmune stuff and got me on an immuno-suppressant. It was a long process with physical therapy and other things, but it eventually got better and I cleared my mind and went back to school, as healthy as I'd ever been. I was lucky to have a lot of family support though, and I don't know what would've happened without them.
It's gotten worse again over the last year and literally a month ago, I was in the hospital for a severe psoriasis treatment center, and receiving cortisone shots in my knees for the arthritis. My doctor recently put me on a much more powerful infusion immuno-suppressant and it's actually made everything a lot better. My knees and skin both cleared up and even though I've basically regressed (physically and emotionally) over the past year+, I'm on the slow road of recovery. Unfortunately, long term use of this medicine can actually cause lupus, but I know the lighter drug I'm taking, methotrexate, is used to fight it.
I don't know if I have any good advice to give about your school/home situation. I definitely fucked up by trying to finish out school while my body was going to hell, but I also did an extremely poor job managing it and I wasn't really mature enough to let others help me with my problems. It seemed like a foreign concept to me, but your network really needs to know what's happening and try to get as much help from your counselor/adviser or whoever as you can. Even people you think can't help you, can sometimes come through. And if you need someone to talk to about health or school or doodling or w/e, you can PM me. I've never had all of those issues, but some of them are definitely familiar.
On November 11 2011 14:17 SonuvBob wrote: Well that sucks. =/
If it were me I'd probably try a drastic change in diet like Paleo (see the H&F forum), partly because it's supposed to help with auto-immune and inflammatory stuff, and partly because well, why the hell not, it beats just waiting. :p And it can help just to feel like you're trying something.
It won't make an immediate difference, but a lot of smaller things (smaller than medicine) can help manage symptoms. Paleo diet isn't completely insane (basically eat lean meats, nuts, lots of fruits and vegetables and lower or reduce the amount of wheats, sugars and oily foods you eat), although you might still need milk. I know I still need a good amount of calcium because my medications sap it. I'm not actually following that diet, just the basic principles are good as there are some things known to make inflammation worse (especially fried foods) and some that make it better (fish oil.)
Yeah, there's a lot of research showing that getting less omega 6's and more omega 3's will reduce inflammation, but from what I've read it can take 4-6 weeks (or possibly much longer) to have a noticeable effect.
But if the "leaky gut" theory is right (which I'm still not convinced of) and your problem is related, then doing strict Paleo could make a difference in 2-3 weeks. (random anecdotal evidence I found w/Google: http://www.paleoforlupus.blogspot.com/ )
Whenever I read a blog about someone suffering to this extent, I feel ashamed of myself for being such a pussy sometimes.
I've never had any major illness like you have so I just won't understand how truly miserable it is living like that. In fact right now I'm really sad that I'm not living my life in a more healthy way because I can when people like yourself cannot.
I really really hope things get better for you man. The one thing I can relate to is your oppressive father, because my parents are quite awful as well and good at making you feel like trash. Having that on top of your illness... I sincerely hope things will be better in the future for you.
I would look into traditional acupuncture treatment and herbal medicine as an alternative option. You just have to find an effective acupuncturist to notice any difference. Personally, I recommend gobangacupuncture.com if you live close by or can get there fairly easily. I would contact them first though about your condition and see what they can do for you before going. But if it's too far, you can also look into an acupuncturist in your area.
For some of the most effective herbal medicine with zero side effects I would recommend looking into biodrux.com. I have tried their herbal formulas for a while and they are really just as effective as pharmaceutical drugs but without any of the adverse side effects. The downside though is that the prices went up quite a bit since a few years ago.
Well now I'm really sorry for making Viola jokes the other time (if you still remember that...). Boo.
I'm no doctor so I don't have any idea how I would offer help or advices on that aspect. However, I do have a friend who sort of sounds similar - she's same age as me (22), sleeps a lot but never feels "well," incurs random sicknesses throughout the year, and is depressed often without a big reason. She's finishing her degree part-time because of these medical reasons. Oh yeah, and she plays SC2, lol. If you want to know more about her (or how I talk to her from a friend's point of view) just let me know via pm.
EPT
