After what felt like a forever flight, I landed in Michigan and my sister Lauren picked my up from the airport to help me lug my shit around. The airport is about an hour from my house and when I walked inside my mom was at the door to usher me upstairs to take a shower, to give me new sweats, and throw everything I was wearing in the washing machine, ha. The first couple days at home were rough, I was having “arm episodes” daily, I was having a lot of upper spine discomfort, headaches, would get mass waves of nausea, exhausted , and was just anxious with everything that had happened and the unknown.
Before I left I went over all the information for medical leave with the PC doctors, so when I was given a case manager back home I figured it was protocol to help with doctor appointments and to point me in the correct direction. The first call I had with her she dropped what felt like a bomb on me. She said that with medical leave if they can’t come up with a concrete diagnosis that there would be no chance to go back, that even after the month if I was feeling okay, was given the okay from my doctors, if there wasn’t a name or cause to why I was sent home I would be denied in going back. She also told me that even with a concrete diagnosis and my doctors signing off on going back that Washington could still deny my request. This was annoying and I felt hella bamboozled, but I was determined to go back so I started making appointments to get things figured out.
First stop was my primary doctor, Dr. Lumberg. I explained my symptoms and how sick I was back in Liberia; he ordered a full blood panel, stool sample and an MRI. He put me in touch with a college at Michigan Institute for Neurological Disorders (M.I.N.D), Dr. Fellows who would be the point man for my arm/neck issues.
November 12th - Text to my dad: “Have a neurology apt today at 2. Pretty sure I’m getting worse. More discomfort during the day with nauseas/headaches. It’s a fun thought I keep having that I could have some weird numbing disease or like spine/brain cancer.”
The next Friday/ Monday/ Wednesday I had MRI’s planned and an EMG planned after the Wed MRI. Fellows wanted to rule out MS as one of my diagnosis. Such a scary time because I was almost constantly un-comfortable, yet I looked physically okay and it was hard to describe to people that I felt like shit.
November 15th – Text to my dad: Doing okay, breathing cavity feels a little labored last 2 days like if I breathe in, I feel it in my spine, so it’s a whole struggle bus thing. Keeping busy to keep my mind off it so it doesn’t give me anxiety on top if it haha.”
Got my results back by the 16th saying my blood and stool came back clear. The sample previously had come back with E. coli in it, but the current sample came back clear. This was reassuring (ish?). Of course my mom had talked to her friends/sisters during this time and everyone was worried I had contracted some weird contagious disease (this was not a concern of mine), so when the stool sample and blood came back basically normal, I was no longer shunned. I say ish because when you feel like shit you want someone to just tell you what’s wrong so you can be like, perfect ABC will fix it, as opposed to feeling like shit and them coming back being like, no your grand.
November 16th- Text to my dad: “Just got a MRI done of my brain with and without contrast. Should hear by Monday. Monday I also have another MRI of my spine.”
For those who haven’t gotten an MRI before, its pretty uneventful. There are a lot of weird and loud noises, so they give you either headphones or earplugs. Since I was doing it of my neck/spine/brain they put me in a sort of head cast. I kept my eyes closed (per my mom’s advice). Although when I did open them, I could see the light at the end of the tunnel, making it less tomb like. I used a meditation technique of saying (in my head) breathing in/ breathing out to keep occupied because I couldn’t find a topic to think about for that long. Fellows called back same day and told me the MRI of my brain came back normal.
For those who haven’t had a EMG before, its like lots of little shocks to see how your nerves respond and I had a needle poke test where she stabbed me with a needle like 10 times on both arms to once again see how I respond. In theory both were fine. The first one was better, the second one I think the anxiety of the whole situation started to get to me because I started feeling hot, then felt like I could pass out, and it ended in her taking a break getting me a juice and me crying. Now in fairness I think a lot of people have the test and are fine, but I hate needles and was super stressed already so all of that just made the experience a bit much.
December 1st, I got a message from Lumberg saying he got the results of my MRI and I had some central disk protrusions in my upper thoracic spine, he discussed with Fellows, but findings wouldn’t describe my symptoms. Fellows couldn’t come up with anything neurologic, which was good. Lumberg thought its mechanical (was taking steroid and wondering if that was helping). He thought since I was in Liberia, I should see an Infectious disease Dr. and should make an appointment with a rehab Dr to see there thoughts.
I was so painfully annoyed by this, “its mechanical” answer, as if that was to make me feel better. Not only is that NOT a concreate diagnosis, it doesn’t leave me with a defined treatment plan. Just because it’s been said doesn’t mean I was feeling better or it was going away.
My general symptoms were getting better, my arm wasn’t “flaring up” every day like it was before, but when it did, I would get isolated spots of discomfort, heaviness and what felt like growing pains/weakness.
I made an appointment with infectious disease, which even at the time I felt like was a waste, but I did it anyway. The only thing I really remember from the Dr was when he looked me straight in my face and told me I didn’t have some like African money disease or something, where the main symptom is fevers, which I hadn’t had in almost a month, and I just remember looking at him and being like no shit Sherlock. He did a blood panel searching for things the other doctors may not have thought to look for and I went on my way. A week and a half later I got a call saying my arsenic and metal level were high and I should find a toxicology lab to do further testing. He was completely useless in everything but reading me the results, he didn’t have a recommendation in who to see or any other information. It was like ready this is what you need to find, now fly.
Eventually I ended up finding a chelation specialist who gave me some things to help lower my levels and we did a pee test to get a proper level of arsenic in my system. This test was real cute, I got a jug from the hospital and every time I peed for 24 hours I had to pee in this jug and keep in it the refrigerator, luckily we had a empty refrigerator in the basement where I could store it. I got those results and they came back elevated, but not crazy, I was told by the chelation specialist, Walker, that you can actually sweat out arsenic (fun fact), so he suggested going to a sauna and to cut out foods higher in arsenic then others (rice is really high). He said we would retest in a month or so.
I made a rehab appointment; it was more of a general conversation on what options I had. The doctor said I should do a round of PT and that I could consider being put on a nerve blocker for my arm. I told PC this, and they said they wont cover PT, that I would have to get that through workers compensation, so helpful *insert eye roll*.
During this trying to get better time, I joined a hot yoga studio, thinking the stretching and breathing techniques would help my “mechanical issue”, my mindset, and I could sweat out all my arsenic. My “flair ups” were happening a handful of times during the week, and I was even having days without flair ups. Overusing my arm would throw me into an episode, but I was able to overcome them faster, and using a heating pad defiantly helped. I was defiantly getting stronger, I wasn’t getting headaches as often, and was rarely nauseous. Lumberg’s official diagnosis was nerve damage, that would take weeks/months to get better. He said he thinks it could have been some sort of weird viral kickback that made it so much worse, giving me the nausea/headaches, that it all needed to run its course because other then the arsenic test everything was coming back normal.
To some people this may have seemed like good news, but I knew without a concreate diagnosis I couldn’t to go back to Liberia and my deadline (Dec 21st) was fast approaching. A few days before the 21st I made “peace” with the fact that I would not be able to go back and finish out my year. This defiantly threw me into a funk. I had appointment after appointment, gone through hell and back only to have the result not in my favor. The only thing that made me feel better was the decision that I would take a few months and then go back for a visit to have a proper goodbye and divvy up all the things in my house.
In retrospect I see everything happens for a reason, because just as I started to get better and back on my feet, my mom ended up in ER in the fight of her life.
Before I left I went over all the information for medical leave with the PC doctors, so when I was given a case manager back home I figured it was protocol to help with doctor appointments and to point me in the correct direction. The first call I had with her she dropped what felt like a bomb on me. She said that with medical leave if they can’t come up with a concrete diagnosis that there would be no chance to go back, that even after the month if I was feeling okay, was given the okay from my doctors, if there wasn’t a name or cause to why I was sent home I would be denied in going back. She also told me that even with a concrete diagnosis and my doctors signing off on going back that Washington could still deny my request. This was annoying and I felt hella bamboozled, but I was determined to go back so I started making appointments to get things figured out.
First stop was my primary doctor, Dr. Lumberg. I explained my symptoms and how sick I was back in Liberia; he ordered a full blood panel, stool sample and an MRI. He put me in touch with a college at Michigan Institute for Neurological Disorders (M.I.N.D), Dr. Fellows who would be the point man for my arm/neck issues.
November 12th - Text to my dad: “Have a neurology apt today at 2. Pretty sure I’m getting worse. More discomfort during the day with nauseas/headaches. It’s a fun thought I keep having that I could have some weird numbing disease or like spine/brain cancer.”
The next Friday/ Monday/ Wednesday I had MRI’s planned and an EMG planned after the Wed MRI. Fellows wanted to rule out MS as one of my diagnosis. Such a scary time because I was almost constantly un-comfortable, yet I looked physically okay and it was hard to describe to people that I felt like shit.
November 15th – Text to my dad: Doing okay, breathing cavity feels a little labored last 2 days like if I breathe in, I feel it in my spine, so it’s a whole struggle bus thing. Keeping busy to keep my mind off it so it doesn’t give me anxiety on top if it haha.”
Got my results back by the 16th saying my blood and stool came back clear. The sample previously had come back with E. coli in it, but the current sample came back clear. This was reassuring (ish?). Of course my mom had talked to her friends/sisters during this time and everyone was worried I had contracted some weird contagious disease (this was not a concern of mine), so when the stool sample and blood came back basically normal, I was no longer shunned. I say ish because when you feel like shit you want someone to just tell you what’s wrong so you can be like, perfect ABC will fix it, as opposed to feeling like shit and them coming back being like, no your grand.
November 16th- Text to my dad: “Just got a MRI done of my brain with and without contrast. Should hear by Monday. Monday I also have another MRI of my spine.”
For those who haven’t gotten an MRI before, its pretty uneventful. There are a lot of weird and loud noises, so they give you either headphones or earplugs. Since I was doing it of my neck/spine/brain they put me in a sort of head cast. I kept my eyes closed (per my mom’s advice). Although when I did open them, I could see the light at the end of the tunnel, making it less tomb like. I used a meditation technique of saying (in my head) breathing in/ breathing out to keep occupied because I couldn’t find a topic to think about for that long. Fellows called back same day and told me the MRI of my brain came back normal.
For those who haven’t had a EMG before, its like lots of little shocks to see how your nerves respond and I had a needle poke test where she stabbed me with a needle like 10 times on both arms to once again see how I respond. In theory both were fine. The first one was better, the second one I think the anxiety of the whole situation started to get to me because I started feeling hot, then felt like I could pass out, and it ended in her taking a break getting me a juice and me crying. Now in fairness I think a lot of people have the test and are fine, but I hate needles and was super stressed already so all of that just made the experience a bit much.
December 1st, I got a message from Lumberg saying he got the results of my MRI and I had some central disk protrusions in my upper thoracic spine, he discussed with Fellows, but findings wouldn’t describe my symptoms. Fellows couldn’t come up with anything neurologic, which was good. Lumberg thought its mechanical (was taking steroid and wondering if that was helping). He thought since I was in Liberia, I should see an Infectious disease Dr. and should make an appointment with a rehab Dr to see there thoughts.
I was so painfully annoyed by this, “its mechanical” answer, as if that was to make me feel better. Not only is that NOT a concreate diagnosis, it doesn’t leave me with a defined treatment plan. Just because it’s been said doesn’t mean I was feeling better or it was going away.
My general symptoms were getting better, my arm wasn’t “flaring up” every day like it was before, but when it did, I would get isolated spots of discomfort, heaviness and what felt like growing pains/weakness.
I made an appointment with infectious disease, which even at the time I felt like was a waste, but I did it anyway. The only thing I really remember from the Dr was when he looked me straight in my face and told me I didn’t have some like African money disease or something, where the main symptom is fevers, which I hadn’t had in almost a month, and I just remember looking at him and being like no shit Sherlock. He did a blood panel searching for things the other doctors may not have thought to look for and I went on my way. A week and a half later I got a call saying my arsenic and metal level were high and I should find a toxicology lab to do further testing. He was completely useless in everything but reading me the results, he didn’t have a recommendation in who to see or any other information. It was like ready this is what you need to find, now fly.
Eventually I ended up finding a chelation specialist who gave me some things to help lower my levels and we did a pee test to get a proper level of arsenic in my system. This test was real cute, I got a jug from the hospital and every time I peed for 24 hours I had to pee in this jug and keep in it the refrigerator, luckily we had a empty refrigerator in the basement where I could store it. I got those results and they came back elevated, but not crazy, I was told by the chelation specialist, Walker, that you can actually sweat out arsenic (fun fact), so he suggested going to a sauna and to cut out foods higher in arsenic then others (rice is really high). He said we would retest in a month or so.
I made a rehab appointment; it was more of a general conversation on what options I had. The doctor said I should do a round of PT and that I could consider being put on a nerve blocker for my arm. I told PC this, and they said they wont cover PT, that I would have to get that through workers compensation, so helpful *insert eye roll*.
During this trying to get better time, I joined a hot yoga studio, thinking the stretching and breathing techniques would help my “mechanical issue”, my mindset, and I could sweat out all my arsenic. My “flair ups” were happening a handful of times during the week, and I was even having days without flair ups. Overusing my arm would throw me into an episode, but I was able to overcome them faster, and using a heating pad defiantly helped. I was defiantly getting stronger, I wasn’t getting headaches as often, and was rarely nauseous. Lumberg’s official diagnosis was nerve damage, that would take weeks/months to get better. He said he thinks it could have been some sort of weird viral kickback that made it so much worse, giving me the nausea/headaches, that it all needed to run its course because other then the arsenic test everything was coming back normal.
To some people this may have seemed like good news, but I knew without a concreate diagnosis I couldn’t to go back to Liberia and my deadline (Dec 21st) was fast approaching. A few days before the 21st I made “peace” with the fact that I would not be able to go back and finish out my year. This defiantly threw me into a funk. I had appointment after appointment, gone through hell and back only to have the result not in my favor. The only thing that made me feel better was the decision that I would take a few months and then go back for a visit to have a proper goodbye and divvy up all the things in my house.
In retrospect I see everything happens for a reason, because just as I started to get better and back on my feet, my mom ended up in ER in the fight of her life.