Around last June I started swelling in my upper abdomen and legs and was feeling weak. My hair was falling out and my heart palpating terribly. I went to the doctor in the main city Kampala and she told me I looked good and sent me home. I went back in July and demanded she do some blood work (why do we have to do this??) and sure enough it showed that my kidneys were bad again. Stage 1. In 2004 I went from stage 1 to stage 4 in 9 months so it was not good news. But I went back home and just lived. In August I had a terrible Urinary tract infection. I had to have IV antibiotics. In October I had another one. More antibiotics. In November I had Typhoid Fever. I was soooo sick. It took two rounds of powerful antibiotics before it was gone. The cure was worse than the disease because those antibiotics caused excruciating joint pain. More than my normal Lupus and RA joint pain!
I did okay until February when I started feeling weak and shaky. The heart thing was back. Swelling was everywhere but especially in my upper abdomen. It hurt up under my ribcage. I couldn't breathe. There wasn't enough air. It was like breathing through a straw with my nose pinched. My legs were swollen and a small ulcer was starting. I wondered if the kidneys were worse so i went to a local clinic and had them checked. The creatinine was higher than before but not too much. Still stage 1. Phew!
I made an appt. with the doctor in Kampala again. I told her all my symptoms and reminded her I was on a 'poor missionary's income'. But she ordered some really expensive heart tests and a Thyroid test. They came back normal. I told her I was having pain and swelling but she told me to exercise more and eat less. I left. One week later I went back. I told her I am swelling and having pain in my upper abdomen.I couldn't breathe. Having pains in my chest. This time she ordered an ultrsound scan of the upper abdomen and a liver panel which came back normal. I showed her my leg sore and she didn't seem bothered. The ultrasound results came later and showed an enlarged liver. To this day she has not addressed that.
In March I went back to her office because now the wound on my leg was 3 cm x 4 cm big and quite deep. It had black edges. She acted nonchalant and told me it had cellulitis. Being a nurse and knowing how its diagnosed, I waited for her to say lets get a CBC blood test and see where the white count was. Its usually very very high with cellulitis. She did not. She sent her nurse to give me an antibiotic to take home and cover the wound. I refused at that point, covered it myself and walked out.
The next day I was exhausted and in pain from this leg ulcer and from all the swelling and from the pain in my upper abdomen so I rested. But the next day I went to a local clinic and showed the doctor my leg. He ordered a CBC. Come to find out, my white count wasn't high but very very low. I had almost no lymphocytes. I am severely anemic. I have no immune system. He told me that the wound on my leg came from a combination of non stop swelling and absolutely no way for my body to fend off the impending sore. Now, I thought back to being told to just eat better and exercise more. I am still really, really mad about the whole thing.
As of now, I am still swollen. I still have pain in my upper abdomen. I have a huge, deep painful ulcer on my lower leg and still can't breathe all that well. I am out of money and even if I did have it I have nowhere to go for good medical care. My family became concerned and have started a fundraiser on my behalf. We are trying to raise enough money for myself and my husband to fly to America so I can get help. I left 7 specialists to come here. I need to know what's going on. I need to get an immune system back. I need to know why I have pain and swelling in my upper abdomen. I need to know if an enlarged liver is a bad thing?? Or how to make it un-enlarged. I need to know why I can't breathe well or my heart beats out of my chest.
So I am appealing to anyone reading this to please look at the Gofundme campaign my sister Kim started for me and was written by my niece Keri. I appeal on my own behalf that if you can give anything big or small that you try and help me. If not, then please keep me in your prayers. All my faith is in God first. When you are in the middle of Africa, 10,000 miles from good medical care, trying to rely on a quack doctor to save your life, and God is ALL YOU HAVE, then you put GOD FIRST. But truly I believe there is someone who can help me too and I would be so grateful!
This is the campaign: https://www.gofundme.com/2vbse-cheryl-s-medical-fund
If you can share it anywhere PLEASE FEEL FREE!
This is my leg:
This is an appeal from my sister:
Hello everyone! I am Cheryl's sister Kim. I too have Lupus. I am not nearly affected like my sister is. As a matter of fact our half sister has it too. At one time Cleveland clinic wanted to do a clinical study on us. In the last year my granddaughter has been suspected to have it and my middle daughter who wrote this campaign is currently being tested for it. Lupus is subjective to every individual. It is a complicated illness no doubt. Research is ongoing and like all pleas for medical research it is not only regarded with uncertainty but often overlooked as it resembles many other illnesses.
Those who have lost loved ones due to this chronic debilitating illness know of the complications.. And for those who suffer daily their loved ones watch the suffering and it is heartbreaking.
I am one of many watching my sister Cheryl and very frustrated. Not only because of how the illness is affecting her but because she is in another country that does not have the resources available to help her.
She worked very hard before she left for Africa and did all she could medically and she was in remission. I myself moved to Arizona to help how the illness affects me. It has helped.
The point is none of us know what, when and where we may have a flare again. We however cannot let this illness keep us from living life. Cheryl chose to live life by giving of herself, helping others worse off than her.....
Our campaign is in support of her determination to give so selflessly of herself for those worse off and this means medical care to get her well again and in remission.
We need to help her get back with her husband by her side, so that she can continue on paying it forward... Her sincere thankfulness even with her own challenges to do all she can means so much to her.
I her sister admire her greatly and I personally thank you for sharing, caring, praying and donating all that you can....
Those who have lost loved ones due to this chronic debilitating illness know of the complications.. And for those who suffer daily their loved ones watch the suffering and it is heartbreaking.
I am one of many watching my sister Cheryl and very frustrated. Not only because of how the illness is affecting her but because she is in another country that does not have the resources available to help her.
She worked very hard before she left for Africa and did all she could medically and she was in remission. I myself moved to Arizona to help how the illness affects me. It has helped.
The point is none of us know what, when and where we may have a flare again. We however cannot let this illness keep us from living life. Cheryl chose to live life by giving of herself, helping others worse off than her.....
Our campaign is in support of her determination to give so selflessly of herself for those worse off and this means medical care to get her well again and in remission.
We need to help her get back with her husband by her side, so that she can continue on paying it forward... Her sincere thankfulness even with her own challenges to do all she can means so much to her.
I her sister admire her greatly and I personally thank you for sharing, caring, praying and donating all that you can....
