Shed No Tears For Me Because I Cant Either

prior to my sjogrens diagnosis i was a trialthelete ,martial artist, and sought after personal trainer and mother of two married and with an overly active life . known as the energizer bunny among other nicknames and was even called superman once by a doctor conducting a physical but all thats behind me. when it first began i just didnt feel "right" ,i felt as if a clock winding down or that my blood was somehow suddenly poisoned. i went through years of relentless medical tests(some a few doctors never heard of) and biopsies and like many others with an autoimmune disorder, all tests came up negative prompting the hypochondria theories. syptoms initially went through every body system beginning with neurological stroke like symptoms followed by gastrointestinal symptoms leading to central nervous symptoms and muscular atrophy.the fatigue -suffocating. so i was misdiagnosed many a time with everything from lupus to ms to menengitis...well the up side was at least i found out all the things i DIDN'T have...finally the tears, saliva and sweat dried up.unable to sing anymore, run, workout,eat and on some mornings even speak at all, my days as an instructor and very active person were impossible. during periods of no flare ups i would try again but finding the right balance between maintaining my strength and pushing to hard is difficult. relationships suffered, my business as well. I lost my marriage of 20 years and in time once successful and livable finances dried up and i was forced to send my children to live with my ex husband. for a brief time i became homeless. its one thing to describe the pain and discomfort one experiences physically- but another to truly convey the pain of loss ,identity crisis, and the reprocussions of not always being strong enough to live a normal daily life.my family was so used to me being "the strong one" that they refused to accept something could go wrong with me and sadly were not and still are not there for me. they just dont understand. i no longer can afford my doctor or pilocarpine, nor can get disability and have adjusted to just sucking it up and taking it day by day and celebrate the days when i feel ok. but most of the time i cant regulate body temperature, worry about my teeth and as i result of all this i was depressed for about 3 years.anyone that knew me and my "postive energy" from a life gone by just didnt know how to deal with me anymore. i really miss a good cry that doesnt deform my face, a good run, my voice, waking up healthy and comfortable,i miss food not sticking to my teeth or choking me- and boy a nice glass of wine would be great once in a while. i miss looking and feeling my age. but my only comfort was a book i found called the sjogrens survival guide. it was good to read similar stories of successful and active women who shared the experience of suddenly a load of laundry knocking them down for the count for three days .it covered the changes in relationships and dealt heavily with how your financial situation will change. i met someone who tries very hard to be understanding and loves me for who i am now not who i was. ive been reduced to pumping gas not great for some one college educated and who owned their own business and charities. mornings are the hardest. never being able to predict if i can make family events is difficult. i could go on and on. the one thing i feel i need is a forum or chatroom or even better a group meeting that focuses on the very misunderstood sjogrens condition. it is more debiltating than the general info given on websites and in books or doctors offices. Dr harry speirer on park ave in nyc can be a big help to many of you that can afford it. i can no longer do that. i still try to stay positive i still count my blessings but sometimes i feel like i need to run one last marathon even if it means i die out on the road doing it.psycologist, psychiatrists, cant and wont get it. what I need is a coach! if anyone creates a home for sjogrens sufferers contact me immediately. i will leave my life behind and move in :)
trailrunner11763 trailrunner11763
41-45
3 Responses Nov 26, 2012

I suffer from Sjogren's, Raynaud's and fibromyalgia. Before I got sick, I was ambitious and hard-working. Now I just pray I can do the minimum to keep my job and my benefits. My family doesn't understand--they try to, but when I am flaring they just seem to get angry. I'm so sorry that you lost your health benefits--are you sure you can't qualify for Medicare? if you are working a low-wage job, you should be able to qualify--especially with the new health care law. I totally understand everything you are saying. Saying a prayer for you.

I have just read your article. I'm so sorry for all your losses. While I was never an energizer bunny or ran any marathons, I was always active. I can so relate to a lot of other things though. Having to give up a career, not having a relationship, not being able to make plans from one day to the next because I don't know how I will be feeling when it's time to do whatever I had planned. I think the biggest thing I deal with though, is the isolation. People look at you and they don't see someone who looks sick. There is no sympathy, sometimes only disdain because you can't seem to pull it together. It's so hard to stay positive. I am grateful however that because I was in the military and am now on disability from the Sjogrens, I am eligible for VA benefits. I don't know what I would do if I couldn't get medication and treatment when I need it. Thank you so much for sharing your story, and if they ever open that home, ill be right behind you!

Hi rosie. Thank you so much for sharing your story. so glad you are eligible for coverage. My doc used to cost $400/hr and I've recently lost my benies duetothe divorce. I just take day by day. unfortunately I have to work 7 days a week now and its too much on me.hope that will change soon. yes I as well had to give up my career and now have two crap jobs for feeble pay just to get by, but can no longer afford docs or meds, but i feel blessed just to have a job. My teeth are just starting to show terrible signs of being affected by my sjogrens and that's frustrating because I do not want to lose my smile. smiling is me. without it I'd be lost. I completely agree about the isolation, I have a new relationship and he triesto be very understanding and caring. but as you said worst part is never knowing from one day to next how you will feel or look so planning anything is difficult. He wants to marry in June. I'm both happy and terrified lol. God bless you and thank you for your military service. celebrate the good days and.....Keep smiling!

I hear you Trailrunner11763!

Here is an amazing support group for Sjorgren's Syndrome patients. http://www.sjogrenssyndromesupport.org/

I found the information on healthcare, advocacy and avenues to get help and support posted by real patients and caregivers very empowering.

Hope to meet you there!