Update on my first 3 weeks back in America from Africa

I arrived safely on October 3rd and saw the doctor October 5th to start the investigation to why my health has deteriorated in the past 9 months. Bloodwork, Ultrasound, CT Scans and a Dexa scan over the past 3 weeks and an emergency room visit with more blood work and an ultrasound has revealed that its my Gallbladder and as of today there are stones that are causing Biliary Colic, a fancy name for 'darn that hurts in my belly'

 I am still very swollen and the pain is worse everyday. The tests in the ER didn't show it acute enough to warrant an emergency surgery but they said it needs to come out. So they referred me to a GI specialist and as soon as I can get in to see him I will hopefully set up a date SOON for gallbladder removal. The liver is still swollen and painful but it should settle down after surgery. In the meantime I am to eat lightly and take Zofran for nausea and vomiting.

Thank you to all who have been praying for me. God hears every prayer! Otherwise I am happy to be back in civilization for a bit. Never take for granted infrastructure and eletricity and clean drinking water. I am happy to be where I hear English spoken mostly. I love seeing all the new cars on the road. It was the first thing I noticed. When did everyone get a new car? And why does a Lexus SUV look exactly like a Kia SUV? lol I am most thrilled with wifi everywhere you go. When I left 4 years ago it was only in a few fast food restaurants. Love. It. Yay!

The only bad thing I see is that Americans are fighting too much over politics. Family members won't speak to one another and old friends have been unfriended. When I look over here from 10,000 miles away I still see America as great as it ever was. Let's not hate our neighbor or brother or mother over political differences. Let's love one another as Christ loves us. Then let's focus on making the whole world great too!

There is a time for everything 2

I last wrote in March of 2018 after finding out I had no immune system. Two weeks later in April I was rushed to a local clinic. I absolutely couldn't breathe. I had Pneumonia. I was given Theophylline, hyrdrocortisone , powerful antibiotics and a pain medicine for the pain around my ribcage (Costochodritis). I really suffered for a month after that with weakness. I couldn't stay out of bed very long.

In the middle of April the gofundme my sister started for me gained momentum and we saw enough money was raised for at least two plane tickets for me and my husband to fly to America for my treatment. We went ahead and he filled out an application at the U.S. Embassy Kampala and made an appt. for an interview for a Tourist Visa which ultimately was May 10. Originally it was June but we checked the calendar everyday to see if there was a cancellation. We kept moving it up until we were left with May 10.

On May 10th he went for his tourist visa interview and was denied. There weren't many questions asked and he wasn't even given a chair to sit. He really tried to explain what was going on but it fell on deaf ears. His denial letter and passport were handed back through the plexiglass window where he stood with an emotionless "unfortunately you have been denied" given by the consulate officer.

We were devastated to say the least. I was just getting more sick all the time. But we let it be and spent over a month of trying to contact the embassy to inquire just what could I do as I was sick and really needed him to be there with me in my time of sickness (In sickness and health we vowed in marriage on Feb 26, 2015) The embassy finally responded back with an email and told me he could reapply after 90 days. At that point 90 days was July.

In the meantime, I had one infection after another. I had IV antibiotics over and over again. In June and July I tried some herbal medicine from Kenya and got some energy to get out of bed. I still had the ulcer on my leg and worked diligently to heal it with Medihoney I had ordered from America and it finally closed over the end of July. I still had pain under my rib cage and abdominal swelling. Breathing was difficult but I still got up everyday and kept trying, kept taking antibiotics and trying to eat. On July 12th Stephen applied for another interview for a Tourist visa. The first open date on the calendar was Sept. 12th.

In early August I had a terrible pain running down the inside of my right leg. I thought for sure it was Typhoid again as it's one of the first symptoms I get but upon having bloodwork, the Typhoid and Malaria screens were negative and I had Septicemia with a bad kidney/urine infection (again). I was very sick and in a lot of pain. The nurses came to the house for 4 days with powerful IV antibiotics and when the pain in my back and down my leg, as well as the pounding headache that came the second day, powerful pain medicine injections and hyrdocortisone. I really thought that this time I was going to die. I came out the other side of it very dehydrated and weak. It took a month to recover.

We kept checking the calendar at the US embassy Kampala to hopefully get the interview date moved up, there were just no cancellations day after day. One day I checked and there was one for one week earlier than what we had so the new date became September 5th. In the meantime, back in May after Stephen had been denied, I had written a letter to the U.S. Ambassador to Uganda here about me being sick and needing my husband with me when I went back to America for treatment. They said they normally didn't do this but they opened his interview and reviewed it and felt the consulate officer did not violate any rules and the rejection stood. But they advised I either have a family member come get me or pay for a medical escort service. Uhmmmm my perfectly healthy strong husband would work just fine.......

So we just waited for the day to come for his second chance. We were prepared this time. We practiced pretend questions they may ask, he learned every name of all my family members in the U.S. and where they lived. He knew the address of where we would be staying. He had every document to prove why he had ties to his country; recommendation letters, rental agreements, his NGO proof of employment, invitations from people in America who wished to see him when he came, financial records, proof of strong family ties here in Uganda. Just everything. He. Was. So. Ready!

On September 5th he went for his interview. As told to me by him, his name was called, he went to the window, an Indian man(from India) with a strong accent was angrily yelling at him that "NO VISAS WERE BEING GIVEN TO ANYONE WHO WAS DENIED BEFORE IN THIS BUSY SEASON" and dismissed him with a motion of sliding his passport and a denial letter through the window. Stephen tried to bring "my wife is sick....." and the man said they were done. Ironically, the letter he gave him was the same one he received the first time, a standard denial saying basically he couldn't prove ties to his country to the consulate officer during the interview and a reason why he'd come back. So he left again with no visa. And no way to accompany his wife back to America for treatment. We had waited a really long time for nothing.

So now my time is up. I have just finished 17 days of antibiotics for yet another kidney infection with pain running down the inside of my leg. I just don't have 90 more days to wait then another 60 days for him to get an interview. If that's what they call it at the U.S. Embassy Kampala. They have strange interviews. I won't bother writing another letter to the Ambassador. I just don't have the strength to fight anymore. I don't know how my tax dollars pay for these embassy civil servant workers here when they aren't even doing what they are supposed to which I THOUGHT was to help us Americans here. I don't really know if any actual Americans are working in the embassy here. I don't know how they call it an "interview" when they don't ask relevant questions or let someone tell their story. I just don't know anything I guess.

So next week I will embark on a long journey back to America by myself. I cannot afford a medical escort and it's not feasible for any family member to fly all that way just to fly back with me. I will say goodbye to my husband at the departure door (here in Uganda they do not allow anyone into the building other than the ones actually flying). I will hug and kiss him goodbye and face the the unknown of what is causing my decline in health. I will face the tests and treatment without his support or encouragement. Without his hand to hold. Yes, there is video chat and facebook messaging but it just won't be the same. I have arranged wheelchair transport at the airports and my family will be waiting for me at the end.

So, there is a time for everything........it's my time to be a bit sad and definitely a lot afraid. It is my time to face the unknown alone.

There is a time for everything.....

Africa has been good but it's time to go back to my country for a bit.

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:

I have nowhere to go for treatment for this.

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....

Help spread the word!

Keeping the faith-a lesson in humility while being God's helping hand

Sometimes a person needs a hand up not a hand out. In my previously privileged life as a comfortable American I didn't have to worry too much about this stuff. 

I came to Africa 5 years ago to help those in need but somewhere along this journey the table has turned. Lately I have become the one holding out my bare hand. 

When they came to my door hungry I gave them my food; today my shelves are empty and my cupboards bare. 

When they came sick I gave them money to see a doctor; when I became sick a few weeks ago a dear friend in England sent me the money to see a doctor; otherwise I would still be sick. 

When they asked for help with school fees I gave them; now with this upcoming school term I don't have even a pencil to give.

 When they just needed a little hand up, I handed them the little I had. 

I am not sure what tomorrow holds for me but I know Who holds MY hand. I have been praying since December for some help.

 God hears my prayers. THAT I know. I just have to keep the faith.  HE will hold me up. 

 Psalm 18:35 “Thou hast also given me the shield of thy salvation: and thy right hand hath holden me up, and thy gentleness hath made me great.”

Many Mansions of Christ International-Uganda: Everything by Cheryl Derby Okumu

Many Mansions of Christ International-Uganda: Everything by Cheryl Derby Okumu: When I ask myself why I came to Africa, I find I can’t sum it up all in one neat and tidy response.  I have to start by remembering my chil...

Everything by Cheryl Derby Okumu

When I ask myself why I came to Africa, I find I can’t sum it up all in one neat and tidy response.  I have to start by remembering my childhood and the times I gave my time and efforts to charities. I was always a kid who gave. I wanted to befriend the friendless in school. Sit with those the others ignored. I wanted to give my things to other kids who didn’t have things. It didn’t matter what things; just things.  All my life I have been a giver.  I’m a compassionate person. I admit. I FEEL other people’s pain. I sympathize and even empathize at times with other’s hardships. I hurt when they hurt. I lack when they lack. I cry when they cry. 

I became a nurse as an adult because I saw I could help others.  Every day for 17 years I helped others. I helped others so much and for so long that I gave all of myself.  I gave my time, my life, my kindness, my skills, my knowledge, and ultimately my health.  My kidneys failed and I was diagnosed with Systemic Lupus, an autoimmune disease with no known cause and no known cure.  Now I was the one being helped. I was the one who needed compassion. I was very ill for a long time. 'In bed every day kind–of-ill'. Except for when I had to sit in a doctor’s office. I had 7 specialists. I used to be a full-time nurse but now I was a full-time sick person.

The pain consumed me. The tiredness and feeling sick to my stomach was constant. The weakness was overwhelming. And then my lymphatic system failed because of constant swelling due to the kidney damage. Then the ulcers came on my legs. Then weekly visits to the surgeon who cut the sores with a scalpel to speed healing. Every Monday they would cut me, then wrap my legs in tight dressings which I could not remove until the next Monday when they did it all again. Eighteen months of this. If I had known during all the suffering what God had in store for me later I would not have felt so hopeless.

When the last ulcer on my leg was still an open wound, I came to Uganda East Africa.  I traded in seven specialists for complete and total faith in God. What did I have to lose? My life? I risked everything and gave all of myself once again to others. I couldn’t do much sick but if I could help just one person it was better than just lying in bed dying.  That wound healed here without any single surgeon or tight wraps.

Since 2013 I have helped one and two and twenty and possibly even 200 so far. I can’t do much physically but when someone comes to my house hungry I can give them food if I have some. When they came for school fees for their kid I gave. When they asked for shoes I gave them mine. I wish I could give more to more but I only have a little money. I often lie awake at night thinking of how if only someone would give me money I would give so much more to people who have nothing.  And when I say nothing, some people just really have nothing.  And they have kids who have nothing. And I can’t give them much of anything.  But I give what I can.

So when I am asked what do I do in Africa? or why did I come to Uganda?  I guess I just have to say I came to give my things to people who don’t have things. I have given all my things over the past 5 years and now my things are running out. In Uganda they would say “they are over”.  My things are over and I can’t give any more things to people who have nothing. But…….if someone gave me something, I could really just give…….something. 

  

“ God?.....can anyone help me give some things?-  because I am still here, still sick, still that kid and still relying on YOU for every. single. thing.”  

Ecclesiastes 3:1-8  (KJV)

3 To every thing there is a season, and a time to every purpose under the heaven:

² A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

³ A time to kill, and a time to heal; a time to break down, and a time to build up;

⁴ A time to weep, and a time to laugh; a time to mourn, and a time to dance;

⁵ A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

⁶ A time to get, and a time to lose; a time to keep, and a time to cast away;

⁷ A time to rend, and a time to sew; a time to keep silence, and a time to speak;

⁸ A time to love, and a time to hate; a time of war, and a time of peace.

Many Mansions of Christ International-Uganda: MMOCI QUARTERLY REPORT OCTOBER-DECEMBER 2017

Many Mansions of Christ International-Uganda: MMOCI QUARTERLY REPORT OCTOBER-DECEMBER 2017: Quarterly Report for October–December 2017 OUR VISION-To have a community where all children can reflect God and can have access to qua...