It's been two years since I've been diagnosed with Lupus. It was a long and agonizing and an expensive journey until I was diagnosed.
As I am sure that many of you can relate to this; how many physicians, blood test does take to be diagnosed with Lupus. Having have gone to several physicians and feeling like you are losing your mind because no one can actually explain all the systems. Also, physician were advising me with fatigue was caused from being diagnoised with hypothyroidism.
I thought of just giving up and just accept the way I was feeling; maybe it was all in my head. I scheduled an appointment with an internist because I needed more medication for my hypothyroidism and thank God I did. I broke down in the physicians office and just said I really don't feel good. Dr. Melody did a battery of blood work. I still can recall the day when my physician office called me and scheduled an appointment to review my lab results.
Dr. Melody broke the news to me gently and advised me that all my systems and extensive blood work leaned towards being diagnosed with Lupus. Dr. Melody was empathic and advised that she wished it wasn't Lupus, but the good news that I was finally diagnoised and could be treated. Not familiar with Lupus and didn't realize that there was no cure. My systems caused extreme weight loss, 94 lbs from 105 lbs., fatigue, daily fever, hair loss, etc.
I was then reffered to Rheumatologist who put me Plaquenil 400 mg. Dealing with all the demons of this disease was difficult. Also, the high dose of the medication caused me to have caused stomach problems. After two weeks on 400 mg Plaquenil the physician finally reduced me to 200 mg.
Months past on and I was so depressed. My productive and joyful life was changing and I just did not have the energy or strength to battle this disease; Lupus. I felt I was in a spiral of depression and no one could reach me. Nor did I reach out for help.
I mean have you ever had days where you could stay in bed stay in bed all weekend long. I did and sometimes still do. I feel guilty because I have active dogs and want to play outside. There were times when I just didn't have the energy for the life of me to do anything. I recall when Sunday would roll around I would get anixious because I would need to gear up "Suck it up Buttercup" attitude for the upcoming and face a demanding and stressful job.
I recall when I finally told my spouse who was at time working out of state that I was diagnosed with Lupus. It seemed like if I expressed how I was feeling that it made me negative person, which is not who I am at all. So I would not complain of the pain I was in or reach out to him or even friends to find comfort and support. I was alone...
I would then follow-up with my internist almost every two months because I just didn't feel good. More blood work, still weight loss, and with no appetite I was then referred me to a hematologist/oncologist. I was frieghtened because I was in a severe situation where I was told to be careful and not be around alot of people and more importantly ill people because it could be life threatening to me because my immune system could not fight off infections and my autoimmune was attacking my good blood cells. The hematologis/oncologist did extensive blood work also and advised that if the my red blood cells did not increase that the next step would be a bone marrow aspiration. Feeling such grief and again no support system I was saddened. All I wanted to do was drown myself in a bottle of wine to numb the pain and the reality of my life.
I went back to Dr. Melody and she referred me to a counselor. I agreed to seeing a counselor, but each week I went to the counselor she could only provide me with relaxation tips or questioned me what was my goals for the week. I needed her to help me how to cope with the way I was feeling. The counselor just didn't understand the disease. Looking back I wish she I would have told her to google the disease of Lupus to understand what I was going through. So I gave up counseling and started sharing my feelings with my most lovable dogs. Crazy as it seems it helped.
After two years of living apart from my spouse and wanting to same our marriage; I gave up my career with a company where I was employed for the past 15 years, relocated with my husband to another state and with no job. This the first time in my life where I wasn't employed. I am looking for work, but not in the field I was once in. I can't afford a stressful job because life is too short. '
So this is my new chapter in life. Reinventing myself and finding that I am so happy to be with my husband and living the beautiful state of Colorado. Although I find myself with a flare up with my lupus and I now have the attitude that it's okay to be hallenged each day with Lupus. I get up early and walk the dogs, then go for a bike ride and enjoy life. My wrist and ankles ache and my low grade fevers are back, but I keep telling myself that I am strong and I will get over this and I just need to stay positive and reach out for support when I need it.
Thank you for letting me tell my story of the beginning of my life and new chapter in my life coping with Lupus.