One of my Administrators told me I needed to accept my new normal and make the adjustments I need in my classroom to make things easier for me. Also to talk to my kids (students) openly about my situation which could also teach them compassion. Let me tell you I did that and I was completely overwhelmed with love, support, and hugs from my kids. One of them later told me after school that it sounds like the same health issues his mom has. He also opened up to me that he didn’t know what to say to her but that he was afraid of her dying. And that really hit me hard. We had a very long talk about just helping her, offering her hugs, and not to take it personally if she’s grumpy because scared people can be grumpy people. Then he gave me a hug. These kids sometimes help me way more than I help them and they don’t even know it.
This has been a very trying week for me. I’m feel like I am just fighting every single day to not fall into a depression. I have moments where I just feel so completely hopeless. I start to think about all of the things I can’t do anymore because if I try again, I’ll have a flare up. I can’t go dancing, I can’t stand at a parade, I can’t go to a concert that isn’t seated, I can’t go running. These are all things I have done this past year and have ended up after only about an hour being in excruciating pain that will last for days. These are all things I love to do. So what do I do from here? I haven’t been diagnosed with anything yet. If you look at me, I look perfectly healthy. I keep thinking that if I air out what’s going on with me on Facebook people are going to think I’m just a hypochondriac, even though I believe inside my loved ones don’t think that. I think it’s because after 12 years I have been in some sort of denial that something is wrong. After this last flare up I finally realized that no, this isn’t normal. That’s when I started taking notes. It’s also a way to keep reminding myself that no, this isn’t in my head.
I have another appointment with my Hematologist on Tuesday to see the results of my labs and also, since my CT scan was denied by my insurance, what the next step will be. I’m really nervous, not even of finding out if something is wrong, I’m more nervous about what it will mean with my health insurance. You know you’re an American when you’re paying out the ass for services you are denied. WTF United Healthcare!!
I am a Teacher and my students are really what help me get through that part of my day. Everything else about my job just feels like a job and I hate that. I always felt like Teaching didn’t feel like a job for me. Yes it has its ups and downs but it never felt like a “job”. Now it does. I think because my mind is constantly going and I’m struggling with getting all the millions of things I have to do at work done while still dealing with chronic pain every single day and also having my mind constantly consumed with what the hell is wrong with me.
I have however been thinking a lot about what I’m going to do when I retire, in about 10 years hopefully. I would love to see the country. And I mean, by selling the house, buying an RV, and traveling the country in search of nature, amazing weather, semi-seclusion (with my husband of course), and just feeling free. I’m not sure what my future holds for me as far as health goes, but I want to stay positive and keep thinking I will very likely still be able to enjoy my retirement years.
So in the meantime I just keep meditating, enjoying my family, and looking for the little joys in everyday life. I am really really really trying to stay positive. I get so annoyed with people who seem to always complain about negative crap, and ohmygod I sure have been feeling like that’s exactly what I’m doing. Honestly that’s one reason I decided to write this blog. So I can just get it all out, without worrying who I’m annoying with my problems. So here I go. I’m just going to let it all out here, but my mind is going a million miles per hour, and I could seriously just type constantly on here about my thoughts. Holy run-on-sentences Batman! I used to journal pretty much all through my 20s. Then I had this stack of books and decided I’m ready to move forward in my life, and forget about all that so guess what….I just through them all away. Somewhere in some landfield are my darkest (aka dumbest) secrets of my life. Having a blog is just so easy because there’s always that delete button, which I actually used on my last blog a few years ago. I’ll try not to delete anytime soon.
Symptoms this week: feet hurting when walking, constant vertigo, head fog, blurred vision, trouble focusing, back pain, weak achy legs, tripping over my own feet, knee buckled a few times, migraines, depression, irritable, shoulder pain.
Well, I got a call from my Hematologist’s office that my insurance company denied my CT scan that was scheduled for next week. I’m sitting here trying not to have a pity party because that will do me no good. My mind is constantly just going and going and occasionally wondering if I’m ever going to get some sort of treatment. 12 years is a long damn time to be dealing with these symptoms and finally when I have a doctor listen to me, my insurance company denies me?! Wow. This is what it’s means to be an American. Pay out the ass for insurance, and get nothing in return from them. You don’t realize this until you have to see a specialist by the way, which clearly I haven’t done until now.
OK. Change of attitude. What’s next. I have another appointment with the Hematologist next week and see what the results of my labs were, and what’s the plan from here on out. The nurse said he may schedule an MRI. But really, would the insurance company approve an MRI but not a CT scan?? I have no idea. I’m trying my best to keep hope alive. We’ll see what happens Tuesday. But honestly with a $10,000 deductible for my family, it’s not like I should be in a big damn hurry to start wracking up the medical bills.
Wait. I said CHANGE OF ATTITUDE. OK, clearly I need to go meditate because my anger is getting the better of me and it does me no good for that to happen. I can’t do anything about it until Tuesday anyway until I see the doctor. So until then, I just wait.
“I GIVE UP,” are words we hear when people are at their wits ends. They are tired of hurting, tired of fighting, tired of pushing, tired of hiding, tired of being misunderstood, tired of being mistreated, tired of being undervalued, tired of being unheard, tired of it all. They have sought help and been refused, […]I Give Up — Angel’s Lupus Journey
I decided to start blogging about what’s been going on as a way to help me to remember all my symptoms that I’ve been experiencing. I’ve been dealing with major flare ups for 12 years now, but when I’ve gone to the Doctor to discuss them I’ve constantly left out some major information to help the Doctor to see the severity of what I’ve been dealing with. This last flare up, I decided to write it all down, then when I spoke to my Doctor, she nodded her head and brought up the possibility of it being Multiple Sclerosis. Before that, I had decided that it was likely Fibromyalgia. So while we wait for some results, I decided to start listing my symptoms and explain how long this has been going on so that others can realize that NO, this is NOT all in your head. I am awaiting a CT scan next week, so maybe there actually IS something in my head. Time will tell. But don’t give up on yourself. Don’t keep making up excuses for your symptoms when you think deep down that there is something wrong. There HAS to be an answer, somewhere. And I’m bound and determined to not quit searching for one.
I had my first major flare up 12 years ago after I had fallen down some stairs on vacation and broken my right ankle and sprained my left. I ended up having surgery and a metal plate put into my right ankle. As I was getting ready for work one morning, sitting in a wheel chair, my back decided to lock up. I’m talking major contractions spread all across my back. I had to lay down on the bathroom floor because I was in agony. It came in waves, for several hours. It felt like contractions that you feel when giving birth, or like having a charlie horse, but all across your back. This didn’t stop for several hours. I finally decided to call an ambulance, and they came and picked me up off the bathroom floor and took me to the ER where they gave me some kind of muscle relaxer and sent me home on my way. No diagnosis, no explanation, no nothing.
Since that time I have had very random muscle pains around my body, always having headaches, foot pains, neck, back, hand, you name it…at some point, it was hurting. I always blamed it on something…..working out too hard, not wearing the right shoes, not drinking enough water, not sleeping in the right position, not taking my vitamins. I didn’t think for a single second it could be something more serious. For TWELVE YEARS I’ve been dealing with this.
I recall having another major back spasm where it locked up on me on July 1, 2018. I remember clearly because I had to miss a Willie Nelson concert that day that I had paid big bucks for. And it takes a lot for me to miss Willie. Seriously. But that day again, my back locked up but this time I was at least on my bed. But again had to stay there for several hours as I had to deal with the waves of pain going through me, screaming and crying, and my family wondering what the hell was going on with me. I imagine it’s like being locked up during a seizure but more aware and alert to every sensation. The pain usually lasts for several hours, and then the next day I can’t stand up and I feel like someone has kicked me all over my body. No one can hug me or touch my shoulders because I hurt, to the touch. When standing, it feels like someone is pushing down on the top of my head and I feel a shooting pain all down my spine. Eventually all of this starts to go away, but then I feel random moving aches and pains all around my body all over again. I went to a massage therapist, and he gently pushed my head to where my chin would touch my chest and I felt that sharp pain down my spine all over again. Poor guy, he probably though he really hurt me during that massage. No bud, I was already in agony.
Since that time, I’ve slept on heating pads for weeks at a time, just hoping I don’t burn my bed with me in it. I’ve taken OTC meds for it, nothing at all helps. This is what I’ve been dealing with since that time: sciatica, plantar fasciitis, migraines, constantly feeling freezing cold, neck and shoulder pain to where I can’t turn my head, frequent upper/mid back pain follows the neck pain, then moves down to lower back pain, occasional shooting pain down my spine, frequent urination (every hour almost on the clock) and frequent urination at night (2-3 times per night), random occasional blurred vision (I even went to the eye doctor about this and they slightly modified my glasses but it didn’t help), frequent anxiety, bouts of depression, feeling pressure in my eyes.
In January 2019 I decided to start Keto because I thought if I lost some weight it would solve all of my problems. Nope. 40 lbs lost and no improvement, just increased energy levels on Keto, so I’m sticking with it.
In June 2019 I took my daughter to a festival where I was standing for several hours. It hit me, hard. I was in misery. I had to keep bending down and touching my toes but my back was severely inflamed. I felt that shooting pain down my spine again. The next morning, I felt like I had been beat up all over.
July 2019 I went to a concert, and after standing for only an hour, again, back was severely inflamed and I had to sit in the lobby because I was about to start crying because of the pain, which also really increased my anxiety. More shooting pain all down my spine. The next morning, again, I felt like I had been beat up.
10/31/19 Began feeling severe hand cramps in my left hand. I actually bought a hand brace to keep my thumb from moving. It was throbbing. It felt like muscle cramps, not joint pain.
11/10/19 Headaches continued and started feeling a lot of neck and shoulder pain. By this time, the hand cramping stopped.
11/11/19 Cramps moved to down my inner thighs. I started feeling all achy like I was about to come down with the flu.
11/12/19 Woke up in the morning and got ready for work. Started feeling small back spasms. I recognized the feeling from before. I went ahead and called into work because I knew my back was about to lock up again. I went downstairs and immediately felt the shooting pain down my spine so I laid down on the sofa, and it happened again. My back locked up for several hours. Major contractions, also felt like someone was standing on my chest and couldn’t breathe during the time of the spasm. It came in waves and finally let up after several hours. It still hurt to move. I could hardly walk the rest of the day. I decided to take a hydrocodone my husband had from tooth surgery and it helped just a tiny bit. I was hopeful that when it was time to go to bed that I would feel better in the morning. But in the morning, I could hardly stand up and I felt like I had been kicked all over my body, again. So I stayed home from work. After that episode, it hurt again for anyone to hug me or to even touch my shoulders.
Since then I’ve been occasionally light headed, like I was in a fog, unable to concentrate or focus, difficulty focusing my eyes, eye pressure, feeling very weak, weak shaky legs when trying to do yoga, heavy feeling in my legs, foot pain when I get up in the morning and lasts most of the day, pins and needles in my feet when getting up in the middle of the night, arms falling asleep at night, hearing popping noises in my spine when I turn occasionally (more like a grinding noise), insomnia, anxiety, bouts of depression, can’t stay focused when reading a book, short term memory issues, mixing up words (you have to take the house outside of the dog), can’t think of certain words when telling a story, constantly cold all the time, difficulty getting out physically from bed at times (due to sharp pains), sensitivity to bright light and loud noises, dizziness, vertigo, light headed, leg cramps at night, hip pain.
This was weird, I was at work last week and I felt like someone was sticking a hot poker in the back of my right eye for an hour. I had to squeeze my eye closed because it hurt so much. Since then, pressure in both of my eyes.
I’ve had migraines that last for days and one night while I was asleep I saw 2 bright flashes of light, while my eyes were closed, while it was completely dark in my room. Shortly after on that same night it looked like someone was walking around in my bedroom with a flashlight and I could see the light, with my eyes closed. Super weird. I also have occasional eye twitches, so I don’t know if that’s related to everything else or what.
So next week I have a CT scan and see if that shows anything. If not, I’m supposed to go to a neurologist. I’m thinking it has to be MS, and I’m prepared to hear that. I honestly don’t know what else it could be.
If you actually read all of this, you deserve a major award….so thank you for your time!