Just over 4 years ago I began having different health problems. The symptoms and patterms were so random and diverse that it took 3 years to figure out what was going on. I have had several different diagnosis but finally found a great MD to figure out exactly what was going on with me.
After seeing this last rheumatologist and with him doing a massive amount of testing, he found out that I had lupus and it is very active at this point. He hasn't found a medication that will take this flair away. Before this I have been diagnosed with fibromyalgia, ankylosing spondylitis and Raynaud's phenomenon. Most patients with lupus suffer from these diseases as well.
For ones that don't know what lupus is, it is a non-contagious, autoimmune disease. It is a chronic disease. There is no cure for this at this point in time. Basically your body starts to attack itself. Lupus is very unpredictable. It is a disease of flares and remissions. I have been in a flare since last May.
Lupus has many different symptoms. Lupus, also known as systemic lupus erythematosus, is an autoimmune disease that can affect almost any part of the body, especially the skin, blood, joints, kidneys, heart, lungs, and brain. My symptoms have affected my face with rash. Lupus, as well as some drugs used to treat the disease, can cause lesions inside the cheeks, lower lip, or roof of the mouth. I occasionally have the lesions in my mouth. Dry mouth caused by secondary Sjogren’s syndrome can lead to dental decay, gum disease, and difficulty swallowing. Dry mouth is just a part of my day. It is always there. I can drink water non stop and it is still there. Sometimes it can be very miserable. I am losing my hair rapidly. Lupus causes your hair to fall out. This is the worst. You know how women are about their hair. My hair is extremely thin and brittle. My hair is long so I am afraid it will fall out more. When my esophagus is inflamed, stomach acid can be forced back into the esophagus (acid reflux), causing heartburn and gas. It can also make swallowing difficult. Digestive symptoms include constipation, diarrhea, and nausea. This is just a part of the disease. I am usually nauseated at least once to twice a day. These problems can be aggravated by the use of corticosteroids or prednisone which I take a long acting kind. It is very expensive. It is $4000/month. I haven't been able to take this medication since it has been so expensive. The prednisone takes the stiffness and keeps the swelling down. With the kidneys, you can have major problems. I have had a lot of UTI's and my protein has increased but the MD hasn't been concerned with it yet. Sometimes the lupus affects my lungs. They can become inflamed and cause pleurisy which is very painful. My joints are always swollen, stiff and it causes a lot of pain. Every time I move can cause major pain. It takes forever in the morning to move with the stiffness. It takes several hours to start loosing up. So this is what I deal with every day. I am usually miserable most of the day and night. If I could sleep, I think I could deal with it better. I can't sleep because of the pain. Sometimes it is 4:30 to 5 am before I go to sleep since I have laid here all night. What most people do not know the effort it takes for someone to function day to day when they have to cope with extreme fatigue, chronic pain, memory loss, medication side effects and visible skin lesions. I think everyone needs to read the Spoon Theory. All you have to do is google it.
My MD took me out of work on May 2014 because I was so bad. I haven't been released to go back to work. I got a letter from human resources that I had exhausted the absence policy so I was terminated from my job. I don't know if I will ever be released to go find another job. I am applying for social security disability right now.
I have lost my house which mom and I lived there 6 years. I have lost my car during this process which was almost paid off. The company that I worked for refused to pay for my short term disability. I have been living off charity. My mom and I are now living in an extended stay hotel and the money that we have is running out. I have 1 more weeks of "rent" then we don't know what we will do. My mom has cataracts which she needs to have fixed plus she needs a total knee replacement or she would have a job right now.
Now I have to cobra my insurance. It is $776 per month. I paid for one month. I will not have insurance after February 28th. I can't afford to pay for that steep of an insurance bill. But I absolutely NEED my insurance. I need to pay for mulitple medications that I can't go without. I go to multiple doctors every month. I don't have anything else to sell. I am waiting to have a CT scan, blood work, and see more doctors (2 new ones.) I have no credit cards to pay for any of these doctors appointments. When I had to cobra my insurance, my flexible spending account went away. I depended on this so much. Now I don't have the money to pay for anything medical.
I have decided to start a GoFundMe account in hopes that I can pay off medical bills, go to my doctors, clear my debt and hopefully be able to afford the next few months of medications and get out of this motel and possiby get an apartment for my mom and I.
Lupus feeds on stress and anxiety and as long as I am worrying about where the next dollar is going to come from or where I am going to live in the next 10 days. Worrying how to make ends meet, this just makes the lupus worse and more severe. I have worried so much since we lost the house and car that I haven't had the opportunity to relax and get better.
My lupus provides many many challenges and unwanted lifestyle changes. I have to depend 100% on my mom for meal preparation, helping me out of the bed, getting dressed and anything else that is difficult to do. This is very frustrating to me. I used to work 60 to 70 hours a week and usually a second job. I had to slow down which is extremely frustrating to me.
I am reaching out to my friends and my community to help me get back on my feet after this horrible year. As difficult as it is for me to ask for (and accept) help, I have realized that part of being strong is being able to acknowledge one's weaknesses. These past year has been the worst and the hardest on my health and finances. I am hoping to get back on my feet so I can continue to get better living with Lupus.
If you can find it in your heart to donate to my cause, I promise to pay the kindess forward.
Thank you very much for taking the time to read my story. If it resonates with you, please donate whatever you can. I would be ever so grateful.
Thanks in advance!!!
- Amira Hamed
- Katina Sharp
- Amira Hamed
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