Last time I was at the rheumatologist, she said that she was learning how to do ultrasounds and wanted me to come in and she'd check out my joints for free. After weeks of going back and forth with calls, I finally was able to get an appointment that actually worked, which was last night.
I was really hopeful that she'd find some inflammation or something. I want a diagnosis so badly. I should learn to not get my hopes up. Absolutely nothing abnormal showed up. She scanned both hands and my feet. Nothing. Everything looked normal. She didn't even bother taking any pictures because it just looked normal. She said that's a good thing, but it still means we're no where near figuring it out.
But I am experiencing pain. Now all it seems like we can do is treat the symptoms. I'll still have an MRI of my back when I finally make it up the wait list. My rheumatologist told me that I should just continue taking my meds and I'll go back either after my MRI or if my pain increases to a point where may need to change medicine.
I'm just at a bit of a low point now. Two of people's biggest stressors in life are money and health. I can't find a job or a diagnosis. It sucks! At least I have family and friends that love me and an amazing husband that keeps reminding me of the good things that I have going for me. But it's still really hard, especially for someone who has been battling depression for over 10 years. Sometimes all I can do is take life one day at a time.
Monday, 30 May 2016
Friday, 20 May 2016
Diabetes
As mentioned in the last post, I had my blood work taken at my GP when I went in for the breathing issue. That was a mess. I have awful veins that die out on a good day. It was this phlebotomist's first day. My vein died out and he had to try a couple more times. I ended up laying on the bed in there because of a combination of the needle and issues with breathing. I didn't get the results of those tests for about a week.
I got a letter in the mail saying that I needed to make an appointment with my GP to talk about my blood tests. Pretty standard and I figured they were normal because I get that letter all the time with the amount of blood tests I get.
I went in and it was not normal. He said that my blood sugar and cholesterol were high. He didn't want to diagnose me yet but he thought I might have diabetes and set up a chronic illness plan. (Which has to do with what we're given through Medicare) I had to go make appointments with a dietitian, an exercise therapist, and a diabetes educator.
I left the place and started bawling on my way home. I was completely freaking out which is weird because more than anything I want a diagnosis. I didn't even freak out when they found the brain tumour. But then again I sort of new in the back of my head (which is funny since that's where the tumour was!) and I was on a lot of painkillers when they told me.
Rohan was at work but luckily it was still early enough that my mom was awake. We skyped and she helped to calm me down. She told me that she wanted to see my results because she's always had high cholesterol and was interested in seeing mine. I didn't get the results but I could get them the next time I went to the doctor.
When Rohan came home he was a great help. He helped me to realise that this would be a good thing because it was a diagnosis and I've had a lot of symptoms that could all be linked back to diabetes. Sure I'd have to monitor what I ate, but the medication for diabetes has come such a long way. (As one of my few memories of my late grandma is her jabbing her stomach with insulin because she had type II diabetes.)
About a week later I had my first appointment with the dietitian. I had Rohan go with me since he makes all of our food. She gave us some information and goals for the next time we came. When I was leaving, I asked for a copy of all of my previous blood tests. I was looking at them on our way home and found something strange. It had my blood sugar level, but it said fasting next to it. I had eaten breakfast two hours before my blood test. I was most definitely not fasting. I looked up the range for healthy non-fasting (random) blood tests online. Mine was perfectly in that range!
I made an appointment with my GP for the next day and he told me that I was right. There must have been a clerical error when entering my blood work into the system. I didn't have diabetes after all. It was a mix of relief and frustration because now we were back to square one with no diagnosis.
He still wanted me to see the dietitian about my high cholesterol but she didn't seem worried about it when I went back. It's only a little high and I explained to her that my mom has always battled with high cholesterol despite every type of medicine, food/diet, or exercise she's done.
I got a letter in the mail saying that I needed to make an appointment with my GP to talk about my blood tests. Pretty standard and I figured they were normal because I get that letter all the time with the amount of blood tests I get.
I went in and it was not normal. He said that my blood sugar and cholesterol were high. He didn't want to diagnose me yet but he thought I might have diabetes and set up a chronic illness plan. (Which has to do with what we're given through Medicare) I had to go make appointments with a dietitian, an exercise therapist, and a diabetes educator.
I left the place and started bawling on my way home. I was completely freaking out which is weird because more than anything I want a diagnosis. I didn't even freak out when they found the brain tumour. But then again I sort of new in the back of my head (which is funny since that's where the tumour was!) and I was on a lot of painkillers when they told me.
Rohan was at work but luckily it was still early enough that my mom was awake. We skyped and she helped to calm me down. She told me that she wanted to see my results because she's always had high cholesterol and was interested in seeing mine. I didn't get the results but I could get them the next time I went to the doctor.
When Rohan came home he was a great help. He helped me to realise that this would be a good thing because it was a diagnosis and I've had a lot of symptoms that could all be linked back to diabetes. Sure I'd have to monitor what I ate, but the medication for diabetes has come such a long way. (As one of my few memories of my late grandma is her jabbing her stomach with insulin because she had type II diabetes.)
About a week later I had my first appointment with the dietitian. I had Rohan go with me since he makes all of our food. She gave us some information and goals for the next time we came. When I was leaving, I asked for a copy of all of my previous blood tests. I was looking at them on our way home and found something strange. It had my blood sugar level, but it said fasting next to it. I had eaten breakfast two hours before my blood test. I was most definitely not fasting. I looked up the range for healthy non-fasting (random) blood tests online. Mine was perfectly in that range!
I made an appointment with my GP for the next day and he told me that I was right. There must have been a clerical error when entering my blood work into the system. I didn't have diabetes after all. It was a mix of relief and frustration because now we were back to square one with no diagnosis.
He still wanted me to see the dietitian about my high cholesterol but she didn't seem worried about it when I went back. It's only a little high and I explained to her that my mom has always battled with high cholesterol despite every type of medicine, food/diet, or exercise she's done.
BUTT
Was that a surprising title? I'm not talking about my bottom. As previously mentioned, my family has something called TUT. When I was little I also had some hyperventilation problems and my sister decided to call them BUTT, short for breathing unable to thing. Yes, my family is weird.
But this isn't about when I was little. This is about two month ago. I started getting breathing problems. They were completely out of the blue. I could breathe through my nose. It wasn't clogged or anything like a cold. I just felt like I couldn't get enough air. I had to breathe through my mouth and I constantly felt out of breath. I wasn't doing any physical activity or overexerting myself. But it kept getting worse.
After about a week, I figured I needed to go to see someone. It was a Saturday so my doctor wasn't open. Instead I went to the walk in clinic. They don't have many tools since it's more for minor injuries and work sick notes. He couldn't see anything wrong with the little oxygen monitor on my finger or listening to my lungs. He said to follow up with my GP on Monday or go to the hospital if it gets worse.
I went to see my GP on Monday. He told me the same thing. Everything seemed fine but go to the hospital if it gets worse. Walking there and back was tough since it was hard to breathe just laying down let alone walking. He also had some blood work done but that'll be the next post!
Then I woke up the next morning and it was worse. Definitely worse. I talked it through with Rohan as he was getting ready for work and we decided that I definitely did need to go to the hospital this time. We were there for 7 hours. They did blood tests. They did chest scans. Everything was coming back normal but I was still having trouble breathing. It made no sense. Even my blood oxygen level was normal but it didn't seem right.
They discharged me saying that there was nothing else they could do or test. Somehow I did get better, although I can't remember how now. But a few weeks later we were in Perth and went into a cave. Then I realised that breathing while in the cave was exactly how it felt when I was having the breathing problems. But yet again I have no idea what it was!
Autoimmune
Early last year, I went in to talk to my GP about my insomnia and hiccoughs. She ordered some blood tests. They came back mostly normal except my auto-antibodies were high. She asked if I had a cold when they were taken. Surprisingly for me, I did not. She had me get them tested again in a few months to monitor them. They were still high but she said they were only slightly high so it was up to me if I wanted to see a rheumatologist or keep monitoring for a while longer. Since it could be an autoimmune disease, I wanted to get in to see a rheumatologist and figure it out sooner rather than later. That was about a year ago and it took several more months until I finally got an appointment.
The rheumatologist looked at my previous blood work and had her own blood tests done. I definitely had an autoimmune disease. I asked last time and my ANA level is over 100 and inflammatory markers over twice what they should be. Her blood tests ruled out the "normal" autoimmune disease like Coeliac and lupus. Even my thyroid was normal, which was a cause for concern since my grandma had Hashimoto's disease when she was around my age.
We weren't sure what it was. I told her that I was starting to get pain in my back. She hasn't been able to find anything wrong by looking at my body. She had me go to the hospital to get a bone scan. That came back perfectly normal. She did start me on some anti-inflammatory medication late last year to help with some of the back pain I was experiencing.
It was great and I noticed a difference right away. But it was supposed to be temporary. I went to my GP to get my prescription renewed and a warning came up that it can cause internal bleeding. My father-in-law, who is a doctor, also said that it's not a good medication to be on long term.
With that in mind, I went to see her again about a month or so ago. She agreed that it isn't a great medicine but if you need it then you should take it. With her permission, I tried to go off of it. She said it starts and stops working quickly so it should be fine. I stopped taking the medication on Saturday. Within a couple of days I was in crippling pain. I couldn't move my hands or back. All I could do was lay there. I couldn't clean, I couldn't play video games, I couldn't even hold a book. I went back on my medicine on Wednesday. I knew that I DEFINITELY needed to be on it. (and thanking God for modern medicine!)
My hands got back to normal in about a week and my back sooner, but I'm deteriorating again. It used to mostly be my back, but now it's my hands and feet. I take baths with epsom salt to relieve some of the pain. Hold a hot mug of tea is also great. I also discovered last week at cake decorating classes that fondant is also great for hand pain. I bought some putty/play-doh stuff tonight in hopes that it'll help.
Last time I was at the rheumatologist, she also told me that she wants to do an ultrasound of my hands. Scheduling that has been hard, but hopefully I can get an appointment soon and we can make progress on figuring out what's wrong with me. I am also on the waiting list for an MRI of my back at the hospital. That's the only downside to universal healthcare. I have no idea how long it'll be until my MRI. In the meantime, I'll just have to keep trying my best to manage the pain.
The rheumatologist looked at my previous blood work and had her own blood tests done. I definitely had an autoimmune disease. I asked last time and my ANA level is over 100 and inflammatory markers over twice what they should be. Her blood tests ruled out the "normal" autoimmune disease like Coeliac and lupus. Even my thyroid was normal, which was a cause for concern since my grandma had Hashimoto's disease when she was around my age.
We weren't sure what it was. I told her that I was starting to get pain in my back. She hasn't been able to find anything wrong by looking at my body. She had me go to the hospital to get a bone scan. That came back perfectly normal. She did start me on some anti-inflammatory medication late last year to help with some of the back pain I was experiencing.
It was great and I noticed a difference right away. But it was supposed to be temporary. I went to my GP to get my prescription renewed and a warning came up that it can cause internal bleeding. My father-in-law, who is a doctor, also said that it's not a good medication to be on long term.
With that in mind, I went to see her again about a month or so ago. She agreed that it isn't a great medicine but if you need it then you should take it. With her permission, I tried to go off of it. She said it starts and stops working quickly so it should be fine. I stopped taking the medication on Saturday. Within a couple of days I was in crippling pain. I couldn't move my hands or back. All I could do was lay there. I couldn't clean, I couldn't play video games, I couldn't even hold a book. I went back on my medicine on Wednesday. I knew that I DEFINITELY needed to be on it. (and thanking God for modern medicine!)
My hands got back to normal in about a week and my back sooner, but I'm deteriorating again. It used to mostly be my back, but now it's my hands and feet. I take baths with epsom salt to relieve some of the pain. Hold a hot mug of tea is also great. I also discovered last week at cake decorating classes that fondant is also great for hand pain. I bought some putty/play-doh stuff tonight in hopes that it'll help.
Last time I was at the rheumatologist, she also told me that she wants to do an ultrasound of my hands. Scheduling that has been hard, but hopefully I can get an appointment soon and we can make progress on figuring out what's wrong with me. I am also on the waiting list for an MRI of my back at the hospital. That's the only downside to universal healthcare. I have no idea how long it'll be until my MRI. In the meantime, I'll just have to keep trying my best to manage the pain.
Hiccoughs
I decided to do my next few posts in themes to catch up what's been happening in the past couple years. It makes more sense than chronological because it goes back and forth. This post's theme is hiccoughs.
They first started a couple months after Rohan and I got married. So I guess that means it's been over a year and a half. But these aren't normal hiccoughs. They happen between 1-4 times per episode and at my worst I was having episodes multiple times an hour.
My doctor kept dismissing them and didn't really understand that it was actually a problem affecting my life. (Granted I never did hiccough in front of her or any medical professional except when I was at the hospital a couple months ago but that's another post.) She was just focusing on my other health issues that were also coming to light. I went in for my hiccoughs and insomnia but the blood work showed more to it than those.
It wasn't until I took matters into my own hands and wrote down when I was having hiccough episodes and how frequently that she actually listened to me. I think my worst was 30 episodes which was about 50 hiccoughs in one day! There was no rhyme or reason. I wrote down when I ate and slept and they had no correlation. They seemed completely random.
She realised that they might be something and I went to an imaging centre to get a CT scan and ultrasound of my chest. They found absolutely nothing wrong. Everything looked normal. That was toward the end of last year and now I'm at a dead end. I still have hiccoughs, although the severity seems to constantly change. Some days I get to the evening, hiccough, and realise that was my first one all day. A lot of my friends think it's hilarious. It drives me crazy! Rohan generally just ignores them but sometimes reminds me that I'm loved because he knows how depressed they make me.
I have tried to look up reasons but I can't find anything online. I have changed doctors and my new one said it could be a symptom of kidney disease, but we haven't looked into that yet. I've had more pressing issues that we're working on figuring out.
They first started a couple months after Rohan and I got married. So I guess that means it's been over a year and a half. But these aren't normal hiccoughs. They happen between 1-4 times per episode and at my worst I was having episodes multiple times an hour.
My doctor kept dismissing them and didn't really understand that it was actually a problem affecting my life. (Granted I never did hiccough in front of her or any medical professional except when I was at the hospital a couple months ago but that's another post.) She was just focusing on my other health issues that were also coming to light. I went in for my hiccoughs and insomnia but the blood work showed more to it than those.
It wasn't until I took matters into my own hands and wrote down when I was having hiccough episodes and how frequently that she actually listened to me. I think my worst was 30 episodes which was about 50 hiccoughs in one day! There was no rhyme or reason. I wrote down when I ate and slept and they had no correlation. They seemed completely random.
She realised that they might be something and I went to an imaging centre to get a CT scan and ultrasound of my chest. They found absolutely nothing wrong. Everything looked normal. That was toward the end of last year and now I'm at a dead end. I still have hiccoughs, although the severity seems to constantly change. Some days I get to the evening, hiccough, and realise that was my first one all day. A lot of my friends think it's hilarious. It drives me crazy! Rohan generally just ignores them but sometimes reminds me that I'm loved because he knows how depressed they make me.
I have tried to look up reasons but I can't find anything online. I have changed doctors and my new one said it could be a symptom of kidney disease, but we haven't looked into that yet. I've had more pressing issues that we're working on figuring out.
Wednesday, 11 May 2016
The Medical Anomaly
Maybe it's a story that needs to be told or maybe I'm just a narcissistic millennial writing another blog about my life. Either way I wanted to document my medical history and search for a diagnosis. I chose the name medical anomaly because that's what I've been calling myself lately. Every test seems to say I'm healthy but that's never the case. So I'm an anomaly because they can't find out what's wrong with me. But then I just found out that a medical anomaly is actually a definition for birth defects but oh well. I still think it describes me despite that definition.
But where to start with my medical problems? I had jaundice as a newborn, but that's not unusual. In fact, I think I was a pretty healthy child. I'd get the occasional cold but nothing too serious. When I was about 12, I started getting dizzy spells and had to keep candy with me at all times just in case. My doctor said I was hypoglycemic but I never actually had my blood tested. The dizzy spells haven't entirely ceased, but they happen a lot less frequently now.
My teenage years got more difficult. We moved when I was 15 and that's when my depression started. Again not too unusual. I also started to develop an anxiety problem that my sister and dad have had to deal with that we call TUT, short for throw up thing. But I'll get to that later when it's actually diagnosed. There's bigger problems between there.
My senior year of high school was awful for my health. I kept getting headaches that were increasingly worse. Painkillers didn't help. I slept almost all day as my only source of pain relief. I went to the doctor repeatedly and nothing. She told me it was "normal" teenage headaches and gave me neck exercises. Then I started noticing that I was having trouble balancing and walking straight. It's a good thing that I never had to do one of those drunk driving tests! But still nothing was diagnosed until one morning I woke up speaking nonsense. My dad rushing me to the hospital and I was diagnosed with a pilocytic astrocytoma. A brain tumour in my cerebellum. It was operated on the next day and you'd think that'd be the end, apart from check ups with my neurosurgeon.
Well my anxiety got worse in college. It escalated during my final years of high school from feeling nauseated to occasionally throwing up to throwing up every time I saw, thought about, or smelled food. During my sophomore year, I reached the peak of my anxiety. But we weren't sure what it was at first. But it was a major problem. I lost 10 lbs from my already underweight body in about a month. My doctor prescribed me a medicine that would speed my digestion until we got a diagnosis. Fast forward about a week and I started having muscle contractions and spasms in my leg and neck. Turns out I was allergic and had to go to the hospital to get an IV of antihistamines. A few weeks later we discovered it was anxiety and I started taking anti anxiety medication and slowly bringing food back into my life.
My next trip to the hospital, apart from follow up MRIs and neurosurgeon visits, was about four years later. I started getting headaches. Not like the ones for my brain tumour. These were different. The brain tumour headaches felt like normal headaches but really bad. These were in the back of my head and felt pulsing. My grandma later told me that she had experienced these types of headaches in the past and described the pain similar to that of the contractions during labour and childbirth. That seemed like it'd be pretty accurate although I've not had kids since they were similar to extreme menstrual cramps. Over the course of a few days, they got way worse. Painkillers didn't help and I was waking up in the middle of the night screaming. During one day, it got so bad that my mom came home from work and took me to the hospital. Tests were done. Nothing came back. I had my regular follow up MRI a couple months later and everything was clear again. But at least the headaches did stop and haven't come back.
I still have depression, anxiety, and a bit of insomnia but that brings us up to the last couple of years.
But where to start with my medical problems? I had jaundice as a newborn, but that's not unusual. In fact, I think I was a pretty healthy child. I'd get the occasional cold but nothing too serious. When I was about 12, I started getting dizzy spells and had to keep candy with me at all times just in case. My doctor said I was hypoglycemic but I never actually had my blood tested. The dizzy spells haven't entirely ceased, but they happen a lot less frequently now.
My teenage years got more difficult. We moved when I was 15 and that's when my depression started. Again not too unusual. I also started to develop an anxiety problem that my sister and dad have had to deal with that we call TUT, short for throw up thing. But I'll get to that later when it's actually diagnosed. There's bigger problems between there.
My senior year of high school was awful for my health. I kept getting headaches that were increasingly worse. Painkillers didn't help. I slept almost all day as my only source of pain relief. I went to the doctor repeatedly and nothing. She told me it was "normal" teenage headaches and gave me neck exercises. Then I started noticing that I was having trouble balancing and walking straight. It's a good thing that I never had to do one of those drunk driving tests! But still nothing was diagnosed until one morning I woke up speaking nonsense. My dad rushing me to the hospital and I was diagnosed with a pilocytic astrocytoma. A brain tumour in my cerebellum. It was operated on the next day and you'd think that'd be the end, apart from check ups with my neurosurgeon.
Well my anxiety got worse in college. It escalated during my final years of high school from feeling nauseated to occasionally throwing up to throwing up every time I saw, thought about, or smelled food. During my sophomore year, I reached the peak of my anxiety. But we weren't sure what it was at first. But it was a major problem. I lost 10 lbs from my already underweight body in about a month. My doctor prescribed me a medicine that would speed my digestion until we got a diagnosis. Fast forward about a week and I started having muscle contractions and spasms in my leg and neck. Turns out I was allergic and had to go to the hospital to get an IV of antihistamines. A few weeks later we discovered it was anxiety and I started taking anti anxiety medication and slowly bringing food back into my life.
My next trip to the hospital, apart from follow up MRIs and neurosurgeon visits, was about four years later. I started getting headaches. Not like the ones for my brain tumour. These were different. The brain tumour headaches felt like normal headaches but really bad. These were in the back of my head and felt pulsing. My grandma later told me that she had experienced these types of headaches in the past and described the pain similar to that of the contractions during labour and childbirth. That seemed like it'd be pretty accurate although I've not had kids since they were similar to extreme menstrual cramps. Over the course of a few days, they got way worse. Painkillers didn't help and I was waking up in the middle of the night screaming. During one day, it got so bad that my mom came home from work and took me to the hospital. Tests were done. Nothing came back. I had my regular follow up MRI a couple months later and everything was clear again. But at least the headaches did stop and haven't come back.
I still have depression, anxiety, and a bit of insomnia but that brings us up to the last couple of years.
Subscribe to:
Comments (Atom)