Living with an autoimune disorder
62dermatomyocitis
I was diagnosed with an auto-immune disorder about 7 years ago. It has been a total life changing experience> I began pre-illness with a wonderful job,two beautiful children ,my own home and a wonderful man who was the love of my life.I had as close to the perfect life as one could.Then one day woke up feeling like a had the flu and it went down hill from there.It took some time to diagnose my disease as it is rather rare.Going through more tests that I can count.I progressively just became worse.My chlildren went from having a very hands on active mother,to one who could hardly get out of bed.My boyfriend went from having me be someone who was non stop ,always on the move ,to needing his help just to get up and down the stairs.The emotional changes that I began going through were almost worse than the illness itself.I began to feel useless,helpless and very hopeless. The wonderful man in my life through all the medical issues was my rock.He actually went on to marry me as we were going through all the health issues which continued to worsen.We became a family.Moved in togather along with his daughter.He became not only the caretaker primarily for our children but also for me. We spent more time in Doctors offices and having lab tests done,being given more and more medication which was suppose to help,but mostly just caused terrible side effects.I became a totally different person than I had prior to my illness.My children had a very difficult time adjusting to thier mother not being able to participate in the things I once did on a regular basis.Things got so bad I could not even leave the house. To speed things up a bit ,it has now been 7 years,I have been through everything medically from antibiotics and prednisone,to exstensive chemotherapy to try and put this autoimmune disorder into remission. Our family has been through hell.Our life totally changed.Our financial situation is now one of just trying to make it from day to day.My involvement with my family also is one that varies day to day. Some days I can get out of bed and clean house,make dinner and do things with my family.Other days I can't get out of bed due to extreme pain and weakness.The autimmune disorder I have is called Dermatamiocytis.It is one that distroys your muscles and makes large open deep ulcerations on your skin.But once again something that is just as bad ,if not worse that the disease is the emotional impact is has on your life. I have so much guilt for not being able to be the mother and wife that I once was and would like to be again.I have so many feelings low self worth,being unable to do most of the things that I once identified myself as having a purpose and worth were gone. I have become so limited physically in what I can do,but still have the mental capacity to think about all that once was ,and all I wish things could be again. I write this,because I know I am not the only one dealing with an issue with this and struggling to get through each day,hoping and praying that for myself and my family my life will return to a functional level. I know I am not the only one that sits and thinks about what I once was,and wonder who I am now. I write this in hopes that I give if just one other person ,some hope for the future.I am going through some new medical treatments now which are showing great promise.It is called IGG which is human immune globulin.It is a grueling treatment,but is well worth it if it puts my illness into remission.We have had to go to numerous Docotrs and Medical facilities as well as do a lot of research to get to this point.But if you are at a point where you feel there is nothing out there.You feel like you just don't see a light at the end of the tunnel.Hold on.Try with whatever enegery you have to do some research.Go on the internet and reach out to others with similar issues.Try whatever you can to go into your providers with information to help you possibly get refered to specialists,but DON'T GIVE UP! I still have those days of hopelessness,but they are less.I talk to people who are going through similar issues to help vent.Try to find your worth,even if it is in different things than it once was.Find beauty in the small things.Surround yourself with people who are supportive,who can be your strenght on the days you have none.But know there can be wonderful tomorrows,even if they are not the way you had immagined them to be. Major illness not only changes you physically,but psychologically as well.It changes those around you.But it does not all have to be for the worse.It has taken me to some very dark places,but I do see a light at the end of the tunnel now.One very big thing I have learned through this all,is that there is always hope unless you give up.So,hang on ,for yourself,for those you love,and fight for every day.I wish you all the very best,and better health both physically and mentally in the future.
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