Most days, every movement feels like I'm in a pool of cement, fighting its weight.
Fatigue does not mean that I’m tired. It doesn’t mean that I just need a 30 minute nap, or that I should just get over it and go out. Fatigue doesn’t mean that I didn’t get enough sleep, that I’m making excuses, that I’m being lazy.
When I tell you that I am fatigued, it means that getting out of bed after 12 hours of sleep is no different than getting out of bed after 1 hour of restless sleep. It means that taking a shower sounds dreadful because it is just another thing that will steal my energy from me. It means that instead of being social or going to parties sounding enjoyable, every single task- packing my bag, putting on make up, trying to get dressed- takes a little bit out of me. And if I happen to get through those things and make it to whatever outing, I will likely spend the next few days on the couch, incapable of much else.
So I am sorry that I cannot do a whole lot, and that I say I am tired all of the time, and that I spend most of my time at home. I don’t want to be this way. I dream of having the energy to run a few miles or party every weekend or bake something in the kitchen. I kick myself constantly every day for the number of things that I am incapable of.
But I truly cannot help it. And I so desperately wish that you could understand that.
Big good news and little bad news in my results from the kidney screening tests
I’ve been getting pretty serious recurring kidney infections for the past few years, and my doctor thought I had an underlying kidney disease causing the trouble.
Well my results came back and my kidney function is normal! Everything looks GREAT! The recurring infections are likely the result of whatever underlying systemic disorder I have, not the result of failing kidneys.
The only bad news was my cholesterol. My LDL (bad cholesterol) is too high and my HDL (good) is too low.
My triglycerides are double what they should be too!
Do any of you know any cholesterol and triglyceride reducing tips that are not just “lose weight”?
For those who have no clue:
Hi. My name is Graves, and I’m an invisible autoimmune chronic disease that attacks your thyroid gland.
I am now velcroed to you for life.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyhow I please.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now!
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything!
Oh, yeah, I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me!
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you loose weight. I don’t discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) Maybe you have a family history of me. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh! Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong thyroid meds for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me.
Can’t get pregnant, or have had a miscarriage?
That’s probably me too.
Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the doctor how debilitating I am and how sick you really feel. In all probability you will get a referral from the ‘understanding’ (clueless) doctor, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her thyroid pill” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
I’ve been trying to keep this next part quiet, but since you’re reading this you already know.
The only place you will get the kind of support and understanding in dealing with me, is with other people that have me. They are really the only ones who can truly understand.
I am Graves’ Disease.
Thanks to my friend Patti & her friend, Jody,for posting this. Bringing awareness to this disease is not only a way to help people understand what we go through, but also to help others recognize some symptoms that might help them to get a proper diagnosis.
Life doesn’t just stop because I feel like crap. I know this. I used to drag my pained butt out of bed every morning to go to school, or work, or now, to take care of my children. Yes, there have been times when I have had to give into it. Like when I stopped going to class in College so I could sleep until 1 pm everyday, and not because I was hungover. Or the 2 times that I had to take a medical leave of absence from the job. The 2nd time because my limbs were shaking like someone with Parkinson’s for no apparent reason (trust me, they tried to figure it out), and I could barely read words on a page. That leave of absence led to me quitting, and 3 months later I got pregnant with Ezra. That was four years ago.
In those four years, when I have had a flare (which have been few and far between, until now), there hasn’t been an easy solution, an out on my “job”. My job is my life, is my kids, is taking care of my home. Cooking the meals and doing the laundry. So I don’t get a medical leave of absence, or the option to sleep through my kids activities. I am it. I have to be here, as much as possible.
Last night, I could barely stand up and thought I might puke. Nathan stepped in to finish dinner and I laid down in the porch, where it was cool. Ezra found me out there and sat on my legs, chatting with me while I rested. Then he got up and rode his trike back and forth while I fought back my pain. Just listening to him was uplifting. It was purposeful. It was a reminder of why I am here, and why I won’t ever quit on myself, or them. Not just because I can’t, but because I don’t want to.
Doctor's appointment JULY 18, 2012.
I met with a Rheumatologist and my GI doctor at Shands. They decided they are going to work together to figure out what’s going on with my body. (YAY! finally, team work!)
So, first I saw my Rheumy and he looked me over and asked a billion questions and said he would talk to my GI doctor about what more blood tests to run and such.
Then I saw my GI doctor and she had my blood test results back from Miami lab that she sent it off to about a month ago. All of the tests were ABNORMAL. Some levels were extremely high and some levels were extremely low! This was good… finally answers showing up through blood tests! Usually my body never shows up anything, so for it to show things was crazy! Now my doctors can now talk and use both of their knowledge to find more answers and hopefully be able to come up with what’s going on for real…
They both are thinking that I have some sort of Autoimmune disorder that is basically responsible for all my other issues including the rheumatoid arthritis, endometriosis and digestive diseases. Whatever this is, it’s causing inflammatory responses in my body and immunology issues. They are not sure which autoimmune disorder this is quite yet, but they said they are going to be talking with each other and trying to put things together.
They just told me for now to stay on the Colchicine, Prevacid, Vitamin D and Folic Acid. And to also take a lot of Vitamin C, multivitamins, Zinc and other Trace Elements.
I FEEL LIKE I AM STILL UNDIAGNOSED!!… they don’t really know what’s going on. First everyone thought I had Crohn’s, then Colitis, then RA, then Lupus, then this, then that… NO ONE REALLY KNOWS! it’s quite frustrating since I almost died going through Humira and all the other drugs they gave me! and came out of all this with MORE problems than I had originally!! :’( But, at least now they are thinking outside the box and are working together as a team…
Hopefully if this is an autoimmune disorder, they can figure out which one it is that’s responsible for all of my underlying problems and get things more manageable… soon, I hope. I don’t see them for another 3 months unless it’s an emergency or something.
Just gotta just hang in there and be as patient as I can be… it’s always the waiting game… always.
I’ve just got to get this off my chest somewhere, and i don’t particularly want to go to friends or family at this point as it will only sound like I’m whining to some or others might freak out with worry.
My neck feels as though I have a scarf tied too tight around it. It doesn’t hurt, but it’s extremely uncomfortable and claustrophobic feeling. I had an ultrasound done on my neck a couple months ago; the doctor said that my thyroid is nothing but dead tissue at this point, but that I have a pretty large nodule that is causing the discomfort. So, I’m going back for another ultrasound on the 23rd to see if it’s changed, and possibly get a biopsy depending on whether or not it has.
It’s gradually been feeling worse and worse, and I’m getting quite anxious about that and the possibility of the biopsy and what that could show.
Anywho, to those of you who read this, I thank you. It means a lot. I needed to express my fear and anxiety somewhere.
Hugs to all my wonderful followers!
I'm here for you!
So I have Myasthenia Gravis too..
For years I struggled A LOT, ever since I was first diagnosed (at 16). I’m now 27 and through the years of my doctors not knowing answers to 99.5% of questions I’ve had, I decided to do my own research and take my health into my own hands :)
With everything I’ve researched and tested on myself (back then I figured i’d try anything because it couldn’t get much worse) I’ve found things to put myasthenia into a non existent state for myself!
Yes, I still technically have it i guess but its like its not even there. I want to share what I’ve learned and be here to answer any questions or give any tips that will help with people who are going through what I did for SO long.
I’ve had every horrible symptom you can imagine from eye problems to stomach issues and of course not being able to walk or even talk due to weak throat muscles.
So, i’m here reaching out as a new friend, and as an info source with what has helped me SO much. I am just now starting my blog specifically on MG info so its not much yet, but it will be.
I wanted you to know that there is someone here who TOTALLY and FULLY understands what you are going through. Ask me anything, i’m here to help if I can. I want to share what I know with the people who need it :) Because myasthenia gravis just plain ol’ sucks and we don’t need it anyway!
Sjoggie life -- let's get real for a minute here
Good evening everyone!
As I mentioned in one of my last posts, I’ve been really sick. Remember back when I wrote that post about my “perfect” life? Well, the Sjogren’s has struck again. The truth is, I haven’t been feeling “well” for the last month. I use the term well loosely, because I don’t usually feel great. But I have definitely felt better.
It’s the time of year when everyone gets sick, colds and the flu are easy to contract, but usually, they’re not a big deal. Unless you have a compromised immune system.
Wednesday, around the end of my work day, it hit me like a ton of bricks. Nausea set in and a fever took hold. I left work an hour early and didn’t return until this morning. I spent four days in bed. I had a fever, chills, and I was dizzier than I care to remember. All of my joints ached and I some how managed to pull a muscle in my calf, making my trips up and down the stairs even harder.
I’m used to having joint pain and feeling my hands give out mid-way through my day. It’s been a part of my life, since I contracted Lyme Disease about three years ago. I’m accustomed to struggling with the stairs.
I don’t generally write about these things, because what’s the point? But with everything that has been going on and people ragging on me for the theme of this blog, I thought I’d open myself up and be a little bit vulnerable.
When I have these episodes, not having Jay here is the hardest thing. I have a dog to walk, I have to feed myself and I have a job to do. I need help getting up and down the stairs.
When I have these episodes I become wracked with guilt. I know that I can’t help it, but I feel like I am letting everyone down — from my husband, to my dog, to my friends and family, to my co-workers and my employers.
Anyway, I went to the doctor who said I had fluid in both of my ears (double ear infection, FTW!). Beyond that, she gave me a referral to another specialist for the autoimmune disorder. I’ve seen two already. The first told me to go online to read all about my new found disorder. The second treats the elderly and felt that because I was 22 years old, there was no way I could be that sick.
“Maybe it’s fibromyalgia,” he had said. I shook my head and left in disbelief. Though I have many of those symptoms, I have others that prove it’s more. I gave up on doctors after that.
Now, lets go back to Saturday. This is day four of having a fever, headache, joint pain, and all kinds of other awesome symptoms. I just sprawled out on my floor and cried. Every time I have an episode I am reminded of some really scary facts. It could get worse instead of better. There is no cure. Since I don’t produce fluid very well naturally, having children may be very difficult.
Seriously. Why can’t I cut myself some slack? Why do I have to put myself through that every time I have an episode? It’s insane and gets me no where. But I was very sick, very vulnerable, and my husband had been gone for three and a half weeks.
I wrote this because I thought it was only fair to give you some insight into what it’s like to live in my dry, itchy skin every day, and to take a peek at what I really go through. This is the best I’ve felt in a month, and I can still feel the ear infection and mild fever. I try to stay positive about things because, well, where is being negative going to get me?
It isn’t going to change my situation. Maybe this new doctor will be able to help me. I doubt it. But I did some research and spent over $100 on vitamins and supplements and I’ve found a massage therapist who actually gets me and what I’m going through.
In a little less than two weeks, I’ll have my husband back for 10 days. I’ll have a small slice of my family life again. That’s what I most look forward to. I love my career and working keeps me busy, but there is something to be said for having what you love waiting for you at home.
Anyway, I have a recipe for beef barley stew that I am hoping to get up in the coming days and I also have a story to right for Watertown Patch. Now that my energy levels are becoming a bit more regular, I should be able to post more normally.
So, how is that, anons? My life as a Sjoggie. It doesn’t get more real than that.