Tuesday, November 20, 2018
Week 8 back in the U.S. / America can do better than this
So, luckily. once a decision was made to get the gallbladder removed out of my body things started progressing fast. At first the ER wanted me to see a Gastro doc but it would have taken months to get in. I leave back to Africa Dec. 12. So I asked my primary doctor for a referral directly to a surgeon. The first one couldn't see me until December so I was given another surgeon in another city nearby with a more open schedule. I saw my primary doctor Monday November 12th and the surgeon the next day. Surgery was scheduled for 6 days later on Monday November 19.
On Sunday night before surgery I refrained from solids and liquids and went to sleep early. We had to be at the hospital at 6:30am which we were. An IV was started and all looked good as the surgeon was on time and in a good mood. The anesthesiologist was cool too. An old guy with a Texas accent and a good sense of humor. I like those kind. At exactly 8:03 I was wheeled out of the room. I am pretty sure I never actually saw the hallway as the anesthesia was given at 8:02 lol.
The next thing I know I am waking up in recovery and the clock says 11:15am. They told me the surgery was an hour and I was "taking a bit longer than usual to wake up" and I was "very pale". My first words upon opening my eyes was "I am in pain help me!" and the second sentence directly following it was "I am going to throw up!" Welcome to my post op experience.......
So they gave me Phenergan for nausea and Dilaudid for pain ( I am a smart nurse with good hearing) and soon they wheeled me back to where I started. I was groggy and still in a lot of pain but awake and talking with the nurses and trying to be positive. I talk about Africa to anyone who will let me... and I can go on and on and on.
Around 1pm the pain started coming back and I told the nurses and they gave me 3- 10 mg Oxycontin tablets. Within an hour and a half they were saying I was okay and I could go home. I had peed and drank some Ginger ale so I was good to go. I was sore but the recent meds were helping me be able to transfer to a wheelchair. The nurses had me sign papers and mentioned for me to not forget to stop and get my E-Script the doctor had sent to my pharmacy for pain meds. I thought I was going to be okay when the Oxycontin wore off. I was relieved I had something for later.
This was my first time ever being operated on. It was a new experience and the unknown was laid out in front of me. I just didn't know what to expect. On the car ride home the nausea came full force but luckily I had Zofran for it left from the ER visit a couple of weeks ago. I got home and into bed and layed on my back and fell asleep for one hour.
At 5 pm I woke up and the pain was coming pretty strongly, not only from the four incisions and my tummy full of operation gas (it was laproscopic surgery) but my Lupus and Rheumatoid pain came in full effect. My back and every joint in my body hurt terrible. So I called my pharmacy to make sure my family could come in and get the E-Script meds instead of me but they said nothing was ever sent to them. Hmmm. So we called the surgeon and spoke directly with him and told him the pain had come and there was no e-script and that I had Tylenol with codeine here that I take daily but a limited amount that I came with from Africa. He told me we would see how I was in the morning.
What?! So I tried the codeine and nothing happened. In fact the pain got worse. So my family called him again and said what are we going to do she is in PAIN. There were heated and anxious words exchanged on both ends of the phone but he said to take 2 codeine's and see how I was in the morning. I took them. Because my back is so bad (it broke in 2 places in 2016-thats why I take Codeine and have for 2 years) I could not lie down on my back. Because of my tummy full of carbon dioxide growing bigger by the hour instead of going down and the pain inside where my gallbladder had been scalpel-sliced from its position and burned off from the underside of my liver, I couldn't lie down on either side in the bed. So I sat upright.......all night. Sleep did not come. Only waves of pain and nausea to carry me through the hours. I took 2 more Codeine at midnight and again at 7 am with no relief whatsoever.
At 7:30 I called the surgeon's office only to get that lovely answering machine message that it was closed and if it was an emergency go to the emergency room. So I did as it directed. At 8:30 I went back to the hospital where I had the surgery and into the ER. Now I was officially considered a DRUG SEEKER. I had committed the carnal sin of not just 'being tough' through the pain and was actively seeking relief from my suffering. But from past experience as a full-time chronic pain sufferer and sick person for the past 25 years I knew there were consequences to pay for this.
So right as I was coming in so were 3 ambulances, a chest pain walk-in and a permanent defibrillator- implant patient with her alarm going off inside her chest. Guess where 'drug-seeking-post-surgical-pain-complainer goes in the list of priority in the triage? Yup. Dead last. At NOON a Physicians Assistant came in. (We don't get real doctors for what I have). I had been sitting (not laying) on the gurney for 3 and half hours in ridiculous pain. I explained the situation and she ordered labwork, chest xray, urine, and IV fluids. On the 3rd poke they got the IV started. At this point I had not eaten or drank since Sunday. It was now Tuesday.
At 12:30 pm the surgeon who operated on me came in. He asked what happened. I reminded him of our TWO PHONE CALLS of last night and that I did what he told me but was in terrible pain. He said he should've just admitted me but I was smiling as I left yesterday. I told him I was feeling less pain at that point because I was MEDICATED and I THOUGHT my E-SCRIPT was waiting for me at the pharmacy which it never was. This was my first surgery ever remember. I thought that's how it works. They give you pain medicine to go home with. Who knew this was a fallacy?
So now he tells me that because my primary doctor has me on codeine (what?) that the pharmacy wouldn't have filled anything he wrote for me anyway because I already had a controlled substance med being filled for me from there. (What?) So I thought quickly back to my days as a nurse and even further back to my days of surgery rotations in Nursing school and I could not recall a single time a patient had surgery and went home and a pharmacy refused to fill a script from a surgeon after surgery because someone was already on a medication for daily pain. And then I realized wait! my primary doctor didn't give me a script for any Codiene here in the U.S.! I brought all my meds with me from Africa because I didn't want to bother anyone to give me ANY meds at all!
So I informed him that no, I brought all my medications with me and no, my primary doctor didn't order them and no there wasn't anything like that already being given from the pharmacy. He said he would give me something and left. The physicians assistant came back and I asked her if he left a script or called in an E-Script and she said no. Thank God this woman had a heart and a conscience because she ordered Toradol to be put in my IV line. Within 10 minutes I exhaled a sigh of relief and her and I took a walk together down the hallway, something I should have (and could have) been doing the day of surgery to dispel that gas but couldn't because of SO MUCH PAIN.
She told me my labs and ekg and xray and all that were fine. I told her I had Lupus and RA and its likely they just freaked out because of laying long on the operating table and freezing cold recovery room table and then lying in my bed on my back and the stress of all the fighting to get pain relief etc. I know myself well. I know Lupus and RA well. ( and I was now the expert on the 'slicing and frying of an organ pain' within my abdomen too). She ordered Tramadol 50 mg for me to take at home and by 1:30 pm I was on the way home. By the time I got home I could walk and lie down again. It was all JUST THAT SIMPLE.
So now in post thoughts I wonder...... Why in the past four years since I have been away from America did surgeons not be 'allowed' to prescribe post-surgical pain relief meds? Then 2) when did pharmacies gain the power to refuse to let a doctor prescribe a more powerful pain medicine for their patients on the fact that they already had a lessor pain med? When I was a Hospice nurse we gave Morphine to dying patients. Do the living ones not deserve that too? Just for a few days even till they were back on their feet again?
Then I wondered if I lived here still, how would I even get my daily pain medicine? In Uganda I walk up to a pharmacy counter and tell them I need this box of Codeine and I walk out with it for about $10 and no drama. Then next month I do it again. With no drama. And the next month..... an so on. I take the same number of pills every day all month long. Every year since my back broke in 2016. When they run out I get more. Its not rocket science.
I feel bad for chronically ill people in my country. I question whether I ever really want to come back and live here. What happened to compassion? Empathy? Sympathy? Common sense? Is every person in chronic pain going through this here? I hear you have to go to pain management and be psychologically screened and tested before you get pain medicine. What?! We aren't crazy....we are in pain! Don't the doctors want to BE DOCTORS? Or should we all just Google everything and figure it out for ourselves then find a street dealer and get what we need? OH NOW I KNOW! That's exactly what has happened! Hmmm.........Come on America. You can do better.
Monday, October 29, 2018
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!
Tuesday, September 25, 2018
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.
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.
Wednesday, March 21, 2018
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:
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....
Help spread the word!
Monday, January 29, 2018
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.”
Friday, January 19, 2018
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.
Wednesday, January 17, 2018
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...
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 quality care and support.
What’s new in this
last quarter of 2017 report?
- - Poultry Project starts
- - Paid volunteers recruited
- - Mityana permit renewed
- - Successful Christmas and Thanksgiving for children
- - Disability supported
- - Our first graduate got a job
Greetings to all our
good volunteers from all over the world and all our good friends. Happy New
Year to all of you and thank you for standing with us in all of 2017.
This reports marks our
last quarter of the year 2017 and includes activities, challenges, way forward
and ministry expenses.
ACTIVITIES
POULTRY PROJECT:
In this final quarter
of the year, much of our efforts and resources were put on the poultry project
since it is the current hope MMOCI has for the sustainability of the ministry.
In the first week of
October 2017 MMOCI Director and poultry staff conducted a poultry training
session in the village where the poultry house site is located. Both the community members and volunteer
staff benefited from the training.
We were also able to purchase the first phase
of the chicks which was delivered on the 5th October 2017 and the 2nd
phase was purchased on the 17th November 2017. An outside fence was
constructed to allow the chicks to get fresh air, sunlight and exercise. Each phase of chickens will mature fully in 4
months. About 459 chicks in total were
purchased from an agent in Mbale Uganda and 5 volunteers were recruited for the
poultry project. Two of them, the farm
manager and the Veterinary doctor were paid volunteers.
Veterinary doctor training the staff about all things poultry |
Supplies purchased |
1st phase chicks when young (October) |
1st phase when grown up (December) |
2nd phase when young (November) |
2nd phase by December |
AGRICULTURE:
Maize grown at the site of the poultry house |
EVANGELISM:
On the 15th
December 2017, we had a Christmas party for the children. Many of those
children later trained and participated in the Annual Christmas and
Thanksgiving Party in our church-Mityana Pentecostal Church December 17,
2017. Apart from the children enjoying
food and participating in the dance, children who participated in quoting
memory Bible verses were given prizes.
Also gifts full of basic essential needs were also given out to the lucky
families that were randomly chosen.
Kids enjoying food at our Christmas get-together |
Many Mansions of Christ Intl Christmas with our kids |
Many Mansions group arriving at church |
Our Bible Study kids ready to perform at the Christmas party/Thanksgiving day at our church |
One of the gifts given away thanks to the Jamestown New York Women's Bible Study Group who donated money for this event |
Many Mansions men performing a thumb piano song |
Director Stephen and his wife Cheryl with our Pastor from Mityana Pentecostal Church |
VISITATIONS:
On the 29th December, 2017 we visited
Mukisa Foundation Ltd. Ministry and had time with the children and the home. We
also had the opportunity to perform a song for the vulnerable children together
with friends from the Anglican Church and the group from Norway known as Akoyo
Band.
Mukisa Foundation Ltd. children at home |
Mukisa Foundation Ltd. Director Carla (standing) |
Gifts were given to the children from Akoyo Band |
Tattakume playing the drums |
MMOCI has continued to pay school fees for both
children in Soroti and Mityana. Some in
Secondary level and the majority in Primary level. Isaac, the first student we sponsored at
University level and Graduated October 2016 was able to secure for himself a
job with Vision Fund Organization Uganda.
VOLUNTEERS:
Our volunteers abroad, especially Mick, have sacrificed
a lot in supporting us with the building of the Poultry Project. We thank God for Mick’s long term commitment
and love for us here in Africa. We will never forget your kindness.
Mel, Neil and Vanda have also continued to play
a big role in sponsoring vulnerable children in our ministry with school fees
every term and we do appreciate their effort. We are humbled every time we see
a Money Gram reference number.
Jill has always put a smile on the faces of very
many children whenever she sends gifts, clothing and scholastic materials for
the vulnerable children. Many of them who walked nearly half-naked now have
something to put on. The people are blessed so much by her generous efforts.
Anna Grace happy in Soroti to receive scholastic materials from Jill |
Parcels arrive from U.K.! |
A very happy family after receiving clothing and sheets |
Director Stephen happy to bring home parcels from post office |
Sam so proud of his gift from Jill |
One of many Mityana kids happy to receive clothing sent from U.K. |
We held a clothing give-away at our church |
A single mother glad to receive clothing for her baby |
Kenneth enjoying a new shirt |
Soroti kid Enoch happy to receive a gift from Jill |
Soroti children also received clothing |
She was loving her new dress! |
PARTNERS:
We are always grateful to partner with Mityana Pentecostal
Church in reaching out to the children under the Compassion Intl. program,
Mukisa Foundation Ltd., Brother in Christ Ministry, Brian C. Derby Painting and
not forgetting our new partners from Jamestown, New York USA of the women’s Bible
Study group. We hope to continue
partnering with you in the New Year in reaching out to our vulnerable children.
CHALLENGES
·
Limited funds for poultry
project continuation until self-sustaining
·
Limited funds for the daily
running of the organization.
·
Lack of adequate amount of
sponsors for kids needing school fees
·
Some chicks succumbed to
death due to factors beyond our control
·
Lack of a vehicle for
ministry use
·
High rent, electricity and
water costs
2018 GOALS
·
Keep on networking with
more partners
·
Develop a 5-year strategic
development plan
·
Re-register MMOCI for a 5 year NGO certificate
·
Research more on breeds of chickens to find best and
fastest grower
·
Complete the 3rd
room of the poultry house and increase the number of chickens in each phase
·
Complete the exterior of
the poultry house including upgrading the solar and fencing
·
Start planning for a trip
abroad in November to share MMOCI’s
vision to help more vulnerable children in Uganda
CONCLUSION
We thank the almighty
God for enabling us to cross to the New Year. We applaud all our partners and
friends who supported us in the last year.
Your generosity was not in vain.
God bless you all!
Principal Director
Okumu Stephen
_______________________________
FINANCIAL REPORT FOR
OCTOBER-DECEMBER 2017
Education 990,000
Rent 1,200,000
Poultry 5,439,600
Water 115,000
Internet 510,000
Evangelism 386,000
NGO Permit 30,000
Food 100,000
Stationary 22,000
Transport 541,000
Scholastic 200,000
Volunteers 1,510,000
Postage 47,600
Television 201,000
Hotel 280,000
Electricity 561,000
Grand Total 12,132,600 ($3,466 US) or (2,422 GBP)
Foreign Donations $1,668
Local Donation $1798
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