this post is mostly for my own record of my health journey for the last 6, almost 7 months.
2011...
september:
the end of september, the weekend of the 23-25, i came up to stg for julie holm's homecoming. i had mentioned to my mom that my shoulders had been bothering me. it was a dull pain, so i assumed it was just me sleeping on it wrong, which is what it felt like. i took some ibuprofen and put on some icy hot pads and called it good. but i had noticed that when i'd get up in the middle of the night, my feet would be extremely sensitive. and walking on the stone that was in the house i lived in was hard. i had also a light sore throat, and a scratchy voice.
october:
i went to chadds ford, pennsylvania on oct. 3-16 for work. i was on my feet for long hours and of course in cute, but uncomfortable shoes. the surfaces were hard and the last 4-5 days, my knees started bothering me. the first i noticed it was going down the stairs in the mornings. they were tight and achy. but also a pain i can't describe. one night, i was laying on the couch and my right knee locked up and i couldn't bend it. then the stiffness sunk in. i would sit down to do either a mock dine or a menu test, and when i got up after sitting for a while, i would be really stiff. i took a minute of me walking around for them to loosen up. i wasn't sure what was going on. also, my wrists had started to swell, as well as my hands. i had to take off my rings, minus the two that i always wear. my parents came and picked me up and we drove to nyc for a few days. i hadn't mentioned the pain, because i didn't think it was that big of a deal. we got to nyc, and in the mornings my dad would wake me from the couch and tell me to go get in the bed, and i could barely walk into the bedroom. he took note and so did my mom. the only thing that would help me loosen up would be a hot bath or shower. so for three days, i would get in a hot shower and let the water loosen my joints. we'd go out walking and that would help also. but i noticed that anytime we had been sitting for a while, would be a struggle for me to get up and walk normally. my parents were worried, so we ended up leaving nyc a day early and headed to slc where i was planning on hanging out for a couple days with my family, and got some blood tests drawn.
dr. madsen, my dad's internist, sent up a blood request sheet where he was sure, as well as others, thought i had rheumatoid arthritis. he also checked my sedimentation rate (to see if there is inflammation in the body). the normal is 20. mine was at 22. and the RA tests came back negative. so my joints were slightly inflamed and i didn't have arthritis! but now, at this point, my aches have covered my entire body. shoulders, wrists, hands, knees, ankles, and feet. and it wasn't just the average ache. it is a pain i can't even describe. i went back to arizona after a few days in slc.
back in arizona, i thought things would get much better. i thought that maybe weather played a lot into my symptoms. it was warm in arizona (90s) and in the 60s+ in pennsylvania. but not only was i wrong about my symptoms getting better, they got worse. i was now at the end of the day hobbling to bed and my ankles had started to swell. i had also noticed a disconnect with myself wanting to be around people. i didn't want to go out nor did i have any desire to do anything. i was constantly thinking about the pain i was in. i also started feeling a slight tingle in my head. almost like the feeling where you've worn your hair in a pony tail too long and it starts to ache. it was that, but also felt extremely tender. so washing my hair was a chore. one because my head was sensitive, but two because my shoulders were tight.
one morning, around 10ish, i had gotten up, after several rough nights of sleep, due to aches and any type of movement would kill, and i got in the shower. i turned on the water to the hottest temperature and got in. i started to feel a little light headed, which i thought was too hot of water. i turned it down and sat (which took a minute) in the shower while the water ran down on me. after what felt like 10 minutes, i stood up and then i put the conditioner in my hair. i then got really dizzy and felt like i would pass out. i blacked out. i woke up, probably 30-45 seconds later with water shooting out at me. i had fallen on the faucet and it had broken. i had also stepped on the drain and it had closed, so there was water around me. luckily i hadn't been out for longer. i had a sore on my side from where i had hit the faucet. i rinsed out the conditioner and got out. i called my mom and dad to let them know, and i also felt so terrible that i broke the faucet that i texted my roommate and let her know as well. (i attribute the black out to not eating and then getting into a hot shower.)
since i was starting to realize that i wasn't getting any better, i got some recommendations for drs. in the chandler, mesa, gilbert area where i could get some more blood tests done.
november:
i went to dr. hatfield and he wrote up a lab slip where i could go get some more blood work done. i had set up a follow up appointment to get the results. meanwhile, i'm still trying to make it through work everyday. my uncle and aunt were coming down to look at schools, and they came into firebirds that friday night i was working. i was stiff and had a hard time walking even just a little bit, and i had the chills for a fever. i guess my aunt and uncle had called my parents and told them i wasn't doing well. my parents drove down to arizona saturday november 12th to come receive the blood results with me. i broke down that sunday about how uncomfortable i was and my dad and mentioned me coming back to stg until i felt better. i told him i'd think about it. on the 14th i went and picked up my parents and we drove to the drs to get my results. just about everything he had tested for came back negative. my thyroid was normal, negative for arthritis again, my sed. rate (inflammation) had jumped from 22 to 63. which was huge. and he had run a test for valley fever, which is an infection people who life in arizona get by inhaling dust spores in the air. i had been down there during the big dust storm. it is a two part test. part 1 came back negative and part 2 came back positive. he told me and my parents that i needed to go the route of an infectious disease doctor or go to a rheumatologist. but at this point, i was almost immobile. i could barely walk and my dad insisted that i come back home. we drove to stg that afternoon of the 14th. i came home and had more blood work done by dr. madsen, but everything came back negative. i had been taking a medication for acne called solodyn (minocycline) which happens to be an anti-biotic and i thought it probably isn't helping anything, since it is an anti-biotic, so i stopped taking it on nov. 15th. dr. madsen referred me to the rheumatologist here in stg. but i couldn't get an appt. till the beginning of december. luckily my dad had turned up the pool temperature and i was able to get into the pool everyday with grandma and grandpa, which helped loosen things up a lot. when i did come home i was in the upstairs bedroom, because i couldn't go down the stairs. no new symptoms. i was then tested for strep throat, lupus, MS, lyme disease, etc... and all came bad negative.
my hands, wrists, feet, ankles, and sometimes my knees were all swollen. i can't sleep and i toss and turn every night. i finally took an ambien and had a good nights rest. i slowly moved every morning and didn't get out of my pjs or my moms robe for days at a time. i lived in the hot tub. and it was amazing.
december:
i went to the rheumatologist, dr. andersen on dec. 1st. we did a full work up. she checked all my joints and came to the conclusion that i didn't have RA. we did mention the minocycline i had been taking, and she told me not to rule it out. we did some more blood work and a chest x-ray. the chest x-ray came back clean but my sed. rate had come back a little bit higher. she also thought that my thyroid was engorged. we made an appointment with my moms thyroid dr. for the 18th of december. meanwhile, we head to hawaii for matt's graduation. for the most part i felt pretty good over there. i was getting some mobility back and even going for walks everyday. i even ran. which is huge!
we came back and went to see dr. hinckle on the 19th. we had planned on not telling him about all the recent blood tests and joint problems. we were just there to have my thyroid checked. we walk to the back and he asks about the, what seems like 60+ pages of lab results, what the heck is going on. i then go through the entire saga. i told him about the medication i was taking. (up to this point, the drs had told me to just keep taking ibuprofen for the inflammation.) i told him i was taking 16 ibuprofen a day! and it wouldn't necessarily take the pain away, it would just take the edge off. my mom and i were headed to slc in the next couple of days for christmas and courtney to have her baby. so dr. hinckle gave me some homeopathic drops and pelts to get me through the holidays. he also wanted to run some tests about the drug reaction i may have had. so we ran more tests. this time, my anti-histone level came back positive for a drug reaction. some of the drops and pelts he had give me were for a virus. and i didn't have a virus because i digressed into the pain that i was in back when i first came home. and it was cold so the mixture of the two was miserable. i stopped taking the virus pelts and drops and things seemed to get better. i switched from ibuprofen to aleve and that helped also. it still didn't take the pain away, but it lasted longer so i was taking 4 aleve instead of 16 ibuprofen. i came home for a wedding and a follow up appointment with dr. hinckle. at this appointment he mentioned this peptide/amino acid shot. i told him i'd think about it and came back up to slc for new years. i had a few fevers of 103 degrees, but they went away after a cool cloth on my forehead or some medication.
2012...
january:
i went back to dr. hinckle the beginning of the new year, where i had decided to do the shot. this shot is a peptide, which is an amino acid. it basically re routes the negative antibodies that my body has produced, and the shot protects my joints from these bad antibodies. i had my first shot on jan. 9th and then my mom and i drove up to slc, in hopes that courtney would have her baby. i was a little stiff when i first got out of the car, but this shot was a miracle. i started helping my mom fold laundry. and when courtney got home with linley, i was chasing her around the house. i went for a walk with them, and even jogged to catch up with them. i felt like i hadn't felt in months. it was a feeling of being back to normal. courtney had her baby the following day and it was a miracle that this shot worked. i had a follow up shot the next monday, the 16th and this time, the shot was supposed to last 3 weeks. when my mom and i left courtney's after she had price, i looked up side effects of solodyn. each case study that i read, was more and more like every thing i had and was going through. we for sure thought it was a drug reaction that was causing my pain.
i had a follow up appointment with the rheumatologist on the 25th and she had suggested i get some blood tests before i came back in. i went and had my blood work and met back up with her. my mom and i told her about the shot, and she didn't necessarily think it was crazy, but she didn't really believe it. however, my inflammation level had gone up again, this time to 93. (normal 1-20). she suggested i go back again and she'd check it again. i had had the shot in-between this, and my level went to 40 something. she was more happy with that number so i went on my merry way. still the same symptoms, but with the shot the swelling had gone down in all joints and hands, wrists and etc...
at the end of january, i had been having some problems with my eyes. the they were really sensitive and my eyelid was really red and splotchy. i went to the eye dr. and he told me i had blepharitis. they were sensitive, and he gave me a topical gel to put on it. it went away a few days after i started the creme.
february:
i had my third shot feb. 6th. and at this point, i felt well enough that i should move back down to arizona. i was moving in with julie, kelsey and then in april, jessie was going to move in. we had found a house and we were excited to move in. we drove back down to arizona on the 6th. i was feeling good. the shot was working nicely. then 6 days later, the shot started waring off. i was starting to feel minor aches and pains, but if it was too bad, i'd take a few aleve. i had started to get really achey the last week before my fourth shot. i was starting to walk slowly, have a hard time lifting my arms and my knees would be really tight. i had my fourth shot on monday, feb. 27th. i was very grateful for it. and it came at the right time. at taco tuesday one night, i was talking to jordan hurst. she told me that her mom had suffered a few things and went to this lady named harriet hamilton. she isn't a certified dr., but she did reflexology and muscle testing to diagnose. at the end of february, my blepharitis came back. by now, it was both eyes, where it has only been my left before, and they were really sensitive still. i went to the eye dr. at target and he again confirmed that it was blepharitis. he told me to get rid of my make up, because the bacteria had all been stored in my make up. he gave me more of the topical gel and sent me on my way. i put the gel on twice a day and it subsided a little bit. but it was still sensitive and red.
march:
my mom came down to arizona that first weekend in march. and i also had a bachelorette party that weekend. unfortunately the shot that i had on the 27th. wore off 3-4 days later. now, when i say wore off, i don't mean i can't walk at all, it just means that i can start to feel minor aches and pains. and it usually starts in my head and works it's way down. the pain is tolerable but if it got bad enough to where they'd bother me and i worry about them. which isn't good. luckily i was able to attend the bachelorette party without any pain, and when my mom came that weekend, i was feeling up to the tasks that we had planned. i told her about harriet hamilton and we both agreed that it wouldn't hurt to just go and see her. i made an appointment with her for march 6th. when the day arrived i headed to my appointment after work. kelsey was kind enough to meet me there. when i sat down and took off my shoes, she started touching places on my foot. if it hurt badly enough, she would make a mark on her paper. after about 5-10 minutes of the reflexology, she moved onto muscle testing. she read off all the places that hurt me that were on her paper and if my fingers pulled apart, that meant that those were areas i needed to improve upon. she told me that my para-thyroid wasn't working. when your para-thyroid doesn't work, it doesn't move the calcium and phosphate through your body. and then she said it hadn't been working for 3 months. then she said that i was extremely low on calcium and that i was about 8 months behind for that. she then said that my adrenal gland and my kidneys weren't functioning at full capacity. she said that my adrenal gland was functioning at 3% out of 100% and my kidney was functioning at 10% out of 100%. i was completely freaked. but she didn't do any kind of x-ray just muscle testing and reflexology. she recommend i take burdock for my para-thyroid, liquid calcium for calcium, and eleuthero for my adrenal and kidney. i started right when i got home. i would put the drops on a spoon and take it like medicine. yuck. (i then was informed that taking it with grape juice would make the tastes go away. thank heavens for grape juice and the information.) i had been taking the herbs for about 4 days and that saturday, march 10th, i had gone outside to lay down and soak up some vitamin d, and came back inside for julie to do my lashes for a class she was teaching. after laying outside for 20+ minutes, i was still a bit chilled. when i laid down on julie's table and she told me how hot i was. i attributed it to just laying outside and getting warm. after she did the lashes, i got the thermometer and my temperature read 103 degrees. i was slightly worried, but i got in a colder shower and it went down to a reasonable level of 98. which is high, but not 103 high. this lasted for 2 weeks. it would be normal enough for me to go to work, but high enough that i could feel the chills. i went back to the herbalist and she said i had a bacterial infection in my spleen (which i later found out can't happen). she told me to take an herb called golden seal for 6-7 days and my fever should go away. after taking the golden seal, my fever lowered, but didn't go away completely. it would always be in the 98-100 degree range. which, for a persistent fever isn't great. i was supposed to have another shot on march 19th, but after i called dr. hinckle he told me to wait until my fever had lowered. it finally hit a normal range and i had my 5th shot on march 29th. it lasted 4-5 days. now i reiterate, that the shot doesn't completely ware off, i just slowly start to feel small aches and pains. mostly in my head and shoulders first. i was asked to go open a new store, in the beginning of april. i decided i would go, but as the shot wore off, and i thought about the long hours, i realized that physically i couldn't do it. plus courtney was blessing price on april 8th.
april:
i came home the first weekend of april, for price's blessing and easter. i had an appointment with dr. hinckle on the 9th, so i headed up to st. george for a fun weekend. i came up on the 4th and had some blood work done, that dr. hinckle wanted me to get done before my appointment on monday. i had mentioned the herbs that i was taking, and so he decided to check for that, amongst other things. i had a good weekend, and felt pretty good. on april 9th, i went in for my appointment with hinckle. i had lost 8 lbs, (15 total) and hinckle wasn't worried about that, but he did ask how i had lost it. he read me back my blood tests and my sed. rate (inflammation levels) had gone up more. i believe they were 108 at this point, i'm not certain. my tests that i had done the week before all came back negative. my para-thyroid and calcium came back fine. but hinckle did notice some hormonal issues that he wanted to check. i was planning on going back to arizona on tuesday, but ended up having to do a 24 urine analysis so had to stay. while in the office, my parents had suggested that i come back home. get out of a stressful environment. i wasn't getting any better in arizona, so coming back home and going to see drs. to figure out what is wrong. dr. hinckle agreed. we had also talked about the shot and how it wasn't working. which is another reason why i decided to come back home. i had to be off the shot for 6-8 weeks to let my cells rejuvenate. flew back to arizona on april 11th, and decided that i would come back to st. george that saturday. i went and finished out my work week, and came home friday night and packed. i left saturday morning for st. george. after many more blood tests, everything came back negative, dr. hinckle referred me to an infectious disease dr. my appointment with the ID dr. was on may 24th. i had a couple more appointments with dr. hinckle, one of them he suggested another shot route. before, i had been on a broad spectrum shot. because we weren't sure if my body was reacting to a virus or a drug reaction. so after being more positive that this was a drug reaction, i had the drug reaction shot on april 19th. the reason why we didn't have to wait 6-8 weeks with the DR shot is because we were going from something that was more general to something more specific. so i went with the shot. i went back for my second DR shot on april 26th. then i wait for 3 weeks to get my next one. my joints would start to ache towards the end of the shot waring off. my ankles were swelling just a little bit. and my eyes had started to get really blood shot. on my left eye, the outer part, and on my right eye, it was red near my tear duct. which is asymmetrical. they were really dry, so the eye dr. gave me a steroid drop and a gel to help with the dryness. and then a couple days before coming back to st. george, i started getting a rash around my neck, on my left side. it wasn't itchy or big enough for it to bother me. but when i came back to st. george, it eventually started spreading all around my neck, on my shoulder and now on my arms, hands, armpit and sporadically on my legs.
may:
back in november, i had tested positive for one part of valley fever. we had only done a blood test before, and it came back negative. so we decided to have a chest x-ray, because apparently if there are any nodules attached to the ribs, a chest x-ray would be my best bet. well, my chest x-ray came back negative/clean. which is always a good thing, but i was definitely pining for valley fever. who would have thought i'd pine for a disease! after the x-ray things had kind of slowed down. no real big dr. appointments at the beginning of the month. however, dr. hinckle did have some more infectious disease tests run, so that way, when i went to the ID dr., he would have diseases already ruled out.
i went to the infectious disease dr., dr. horani on may 24th. my parents and i sat down with him and gave him a full synopsis of my battle with pain for the last 6-7 months. he ruled out things, and my 60+ pages of blood work helped with narrowing things down. we had taken my arizona blood results and he was very curious about one part of valley fever being positive. so before we left, he told me of the procedures that he'd like me to have done. he decided to have some more valley fever tests, however this time, he'd be sending them to a lab at university of california- davis. here they specialize in valley fever. and he also told me he'd like me to have a ct scan of my chest, belly and pelvis. he also did a urnine analysis and tested me for TB. sadly my next appointment wasn't until june 7th. but i did find out that my ct scans came back clean, which again i'm really thankful for. joint wise, i've been feeling pretty good. my wrists have started to swell, and my fingers on my right hand are starting to ache and become extremely tender, so much that i can't make a tight fist and it makes it hard to open doors. it's interesting that everything was happening on my left, and now it's my right side? my eyes are starting to heal. i've just had to be good about eye drops. the redness in both eyes, slowly started to move from my right eye all the way to my left. so my left eye is red on the inner and outer part of my eye.
june:
i have my infectious disease dr. appointment tomorrow, june 7th, where i'll find out the rest of my results and if there are any more tests i need to take. i also have an appointment with dr. hinckle tomorrow as well. i'm supposed to have my fourth DR shot as well. but if they aren't working, maybe i will stop doing them. also, i talked to a girl who had suffered from the same pain i've been going through in 2010. her test results came back as a minocycline induced lupus. she also sent me a medical journal with case studies of people with the same pain issues i'm going through. it was helpful, so i'll take the article to dr. hinkle tomorrow and see what he says. i've taken the valley fever route and the drug reaction route. i'd be fine if either of them came back positive so i can get some results and some closure.
