I'm 21 years old. As much as I like to consider myself an adult, I know I've barely lived. Yes, I've been in love, traveled to multiple countries, held a steady job, and seen the sunrise. But I haven't held my own child in my arms, said "I Do" in a white dress, walked across the university commencement stage, or owned my own home.
I have spent the last four years of my life fighting against my health though. A fight that has beaten me down, bruised and broken me both physically and emotionally. A fight that I'm ready to give up on.
Since 2006, I've seen more than ten specialists. I've spent countless hours in the waiting rooms of doctor's offices, given way too much blood for lab tests, and learned way too much about medicine. I've spent these last four years in and out of feeling good and feeling sick, of trying to live despite unknown health conditions, and fighting to learn what exactly is wrong with me.
This last week was another fight. They told me that my cortisol was high and my ACTH was low. But follow up tests proved that my adrenal glands are supposedly working in okay fashion. It's another result that gets my hopes up then dashes them into the waves. It's another result that reminds me that this may never end.
These four years have been a process for me. I fought with the medical system to get to the bottom of things. I tried alternative treatments when conventional wasn't cutting it. But now, I'm at the end of the road. There isn't much else that we can check for. There isn't much left that I can try. So what now?
My mom says to think positively, open my mind to healing, and to move past what I've experienced. She's an amazing woman, but she isn't me. She isn't living this life every single day. She isn't skipping classes because she's too tired, too upset, or just lacking motivation. She's not crying at the drop of a hat, loading up on ibuprofen just to make it through, or being consumed with nausea at any moment.
No one else is living this life. No one else is going through this. (Please don't tell me that I'm not alone and that you've got my back and there are other patients out there like me. Realistically, I know this. I know that there are others living with worse conditions than my own even. Right now, I just need to express the local loneliness of this condition). Bottom line, it sucks.
It sucks to be 21 years old, a senior in college, and fighting so hard against this. It's emotionally exhausting to consider that what they tell me it is, treatments aren't working for. It's frustrating to wake up every day and wonder what it might contain. Will I get nauseous when I'm supposed to be on a date? Will the pain in my joints make it hard to move? Will an overwhelming migraine keep me awake for hours?
I'm frustrated right now. I'm scared. I'm alone. I don't want to open my mind to healing. I just want to know what this is and have a treatment work. I want to take a pill and make it go away. I don't want to have to think about it for one more second of my life. I don't want to consider that I haven't been to class in over a week...how can I hold a full time job? I don't want to consider that my mood swings are interfering with my relationships...that I'm constantly upset with the guy I'm dating and I'm unsure whether it's him or me.
These conditions are so pervasive. It's beyond the crying spells, the joint pain, even the acne. It's beyond not feeling like myself. It's beyond the reliance on pain pills or anti-nausea medication. It's the way that every facet of my life is affected by this disease, these diseases.
And right now, I just want it to go away. I just want an answer. I want the doctor to call and say they missed something. I want to be fixed, to be whole. I'm tired of fighting. I'm tired of trying. I'm tired of researching medications, of waiting to see results, of not seeing results. I'm just physically and emotionally tired. And I have no idea where to go from here.
Do I accept PCOS and all its symptoms? Do I keep trying for a different diagnosis? Or do I accept my mother's positive thinking and seek healing?
Your Mother is correct listen to her
((((hugs)))) I'm so sorry you are having to deal with the physical and mental aspects of all of this. I don't think it has to be an either/or thing (seek healing vs. continue to search for answers). You can do both. I hope you are or will seek out someone to help you deal with the mental side of all of this....a counselor, a psychiatrist...whatever it takes to help with the depression that has you feeling so down on top of the physical issues. 1-800-NEWLIFE is a free service that can refer you to a someone in your area. You can check them out at the web at www.newlife.com.
Its good to let it all out...i cant fully understand what you are going through with some of your complications coz mine are very different...but i do get the frustration, the going to deep dark places that scare the hell out of you but must be hell for your boyfriend to deal with....so i drank my way to oblivion...not very clever i know....am clean and sober now and all i can say is that it sucks and it will keep on sucking until we geta cure or something like that....and i know that you have made it this far and you will find a way to get through it...just allow yourself to feel and get frustrated and dont deny your feelings and dont let anyone tell you not to...jsut find a way to deal with it and keep living...nothing wrong with admiting that you are human after all...you are a diabetic not wonder woman...
Everyone faces different hurdles and I would be careless to say that I know exactly what your going through. But I can identify with your feelings of hopelessness, of defeatism, of frustration, of emotional fatigue.
These are strong emotions with strong roots. It may not be enough just to decide to think positively about healing. You may need someone to help guide you through these emotions, to find answers to these questions. To gain the strength to deal with your diagnosis.
Admitting that I needed to and going to a counselor was one of the hardest aspects of dealing with my own diagnosis that I have faced so far. But its also probably one of the best things I have done for myself. You would have to be crazy NOT to be emotional about something that impacts your life in such a big way.
I would suggest talking to your doctor to see if he/she could recommend someone who specializes in cases such as your own. Alternatively many Colleges and Universities offer free counseling services to students. Give it a shot. If its not for you your not out anything but a bit of your time. And the benefits might be more than you ever could have imagined.
Hi Lindsey,
Without having read your entire history, I wonder, were you ever check for Celiac Disease? And if you were, and it was negative, are they sure?
My quick backround - 40 years old - diabetic since I'm 12. Around the time I was 30 (after my 3rd child was born), I got Mono (actually, I was 32 at the time - odd right?). I've never been the same. I too feel like crap. Joint pain, odd blood results, etc. I have been diagnosed and treated for Lyme disease, Fibromyalgia, etc. I have markers for Lupus, but I don't have Lupus. I could go on and on. But while testing for all this, and realizing I have several Immunoglobin (sp?) deficiencies, they retested me for Celiac - and I had it. BTW, NEVER had any significant stomach problems at all. But I do have joint pain, swelling, FATIGUE that could kill, malaise (ahhhh... LOVE that word, hate the feeling), headaches, etc etc. PCOS was also a diagnosis.
I'd love to talk to you at length. If you want to email me, please feel free to. I have alot of past experiences similar to yours and I'd love to share them with you. And I'd love to hear yours as well.
This illness sucks. As I get older, and I have it longer, it just sucks. It's an autoimmune disease that unfortunately, leaves us open to many more autoimmune diseases. And what are we left with? A lot of vague symptoms that make us feel like we are crazy. By the time we are ill enough to call the doctor, and then get in to see the doctor, the symptoms subside... the bloodwork is "normal". And we are left feeling anything but....
You can post your email address if you'd like me to email you. I unfortunately can't post mine here.
I haven't been checked for Celiac but plan to have that done at my next appointment. Do you find that the gluten free diet works to prevent your symptoms? I can't imagine living that way...ugh not a diagnosis I want! My hormones are definitely out of balance...they've proven that with multiple blood tests. It's just a matter of finding or accepting what might be causing those hormones to shift in a 21 year old body.
I am still "mourning" the loss of gluten in my life...I am usually a very positive person, and never really complained about having diabetes (I do occasionally allow myself a pity hour - lol)... but having Celiac, for me, is life altering. I lead a pretty busy life, so now, grabbing food on the run is not an option (not a realistic one). But yes, living gluten free has alleviated some of my symptoms significantly (it has taken me over 2 years to admit that). I'm not sure if I can post my email here (but i'll try)... petlilmar@aol.com It's a frustrating thing to hear, but hang in there...