I’m okay, I’ve been feeling completely lost …
I’ve been feeling completely lost. I’ve been playing it’s not anything, just my sugar, just my blood pressure but something is wrong. Today I go and get a heart monitor that I have to wear for the next two weeks. I go after a week to have it read and schedule more tests. My daughter seems to think that I have an arrhythmia of some sort and I will need a pacemaker, that’s the nurse in her speaking I’m guessing. She’s the type of matter of fact speaking her mind person. You see, she’s been with me for a few of my most recent fainting, shaking episodes. Two of those episodes were in a few short hour time span. I get dizzy, sound is very distorted or I can’t hear at all, my vision goes blurry, I get a tingling in my arms and hands, I can’t stand, I’m tired and after I’m tired and my head hurts. This scares the crap out of me My blood sugar levels have been within normal ranges and my blood pressure levels have been within normal ranges so testing my heart it is.
I’ve retreated so far into me that I feel lost
If you just stumbled onto my ramblings, then welcome. I’m a Chronic Illness warrior fighting Lupus, Fibromyalgia, Chronic Migraines, Chronic Pain, Diabetes and Hashimoto’s Thyroiditis and to top it off, I am battling with depression and anxiety. I haven’t written a blog in a few weeks because of that depression and the feeling lost. Writing has always been my escape but I couldn’t seem to bring myself to write. Seems like I get two steps ahead and then four steps back with no end in sight. The goals have been to get me stable and see how things go. Well, it’s been over two years since I’ve been off of work and I miss working. I know I can’t work the way I am with any of my issues, hell I can’t even read and remember what it was I was reading. My anxiety is lower but I haven’t driven much in the past two years and currently, I’m terrified that something will happen to me if I drive. I’m alone a lot of the time and I like people, I like talking to people and I miss that interaction. I’ve retreated so far into me that I feel lost even after two years of treatment.
I’m working on a blog about the Therapeutic Nerve Therapy that I’ve been getting at the Pain Care Clinic but I’ll share a brief description. I started out ten weeks ago but I’m on week eight of getting shots. The shots started out in my spine and in the lower back and they’re directly in the nerves. Oh, I hate needles but if it was going to give me relief (it has some) then I needed to try. The doctor running the trial is amazing. I like him and he’s informative about all the side effects, adjusts the sites as needed and increased the sites as well. He’s also given me some extra cortisone shots into my SI joint. More on this form of torture and relief to come soon!
I’m okay and not in a bad place in my head even with all that I’m dealing with. I’m still mourning the loss of who I was while finding the new me.
I hope you’ll come back and check out future blogs. I’ve received and will be receiving some products to try and even the pupalups will be getting some products to try as well, so I hope you’ll check those out too.
Journey with me … mini2z
My Three Worst Symptoms
I have several symptoms that I live with every single day due to Lupus, Fibromyalgia, Hashimoto’s and Diabetes. Some of the symptoms are normal that you get used to them. There are others you don’t ever get used to such as a constant headache, joints hurting or chronic fatigue.
1. Nausea – for me nausea has been a constant for 24 hours a day and 7 days a week going on for over a year now. I’ve had two children and never had morning sickness this bad with either of them. My doctors have no clue as to why I’m experiencing nausea, only that it’s “lupus related”. I really hate the catch-all phrases like Lupus Related, Oh that’s just the Fibromyalgia, or it’s the medication. I take a medication daily that is prescribed to person’s undergoing Chemotherapy. I also take Gravol in which I can buy over the counter. There are days that every movement causes nausea to increase. I also wear sea bands quite frequently and I’m not even sure that they work.
2. Memory or Brain Fog – for me my memory has become so bad. I have so many apps on my phone to help, I use sticky notes on my computer and I have things written on real paper all over the house. I try to keep things in the same spots or I will forget where the item is when I need it. If I’m talking to you I may forget what I want to tell you mid-sentence. It’s bad and getting worse.
3. Pain – for me I can say my whole body hurts. I have chronic migraines and I wouldn’t wish a migraine on anyone, ever! I also have pain in all my joints, some are worse than the others. For me, the arthritic pain started in my feet. Now it’s my hips, knees, shoulders, neck, back and my left SI joint. How one part of my body can cause so much pain is just baffling. The SI joint pain causes me to basically sleep on my back and I’m a side sleeper. If I move, there is a grinding of bones as I move from one side to the other.
Sleep for me is never what its supposed to be because I don’t have restorative sleep. Since I bought a weighted blanket, my sleep has been much better and I’m not as restless. A weighted blanket is a tool I’d suggest for anyone who has chronic fatigue due to illness. I bought mine from Red Barn Blankets. I was able to choose the size, material, and the weight. They also washed the cotton prior to making the blanket because materials can cause me to get rashes. I’m also seeing a pain care doctor weekly who now gets all my laboratory work as well.
I know that you really can’t ever get used to any symptoms but they become part of your new “normal.”
What are your top three symptoms that you just can’t “get used to”?
Journey with me … mini2z
I currently have three autoimmune diseases and they are also invisible illnesses.
In 1994 when I was pregnant with my son I received my first autoimmune diagnosis for Hashimoto’s Thyroiditis. I saw an endocrinologist when I was pregnant and then he dismissed me after. I’ve only been under my family doctor’s care for most of the time.
Type 1.5 Diabetes or Latent Autoimmune Diabetes in Adults or LADA
In April of 2012, I received a diagnosis of Latent Autoimmune Diabetes in Adults or LADA as a short form. I was first diagnosed as a type 2 but when I saw my new endo I was then told I was a LADA or a type 1.5 or a progressing type one. I had never heard of it but it’s the adult version of diabetes it just takes everyone a different amount of time for the body to kill the pancreas. I am currently on three different pills to control diabetes and have been begging for insulin for about a year now.
In November of 2014, I was finally diagnosed with Lupus SLE. It had been three years of feeling like I have the flu. No one test or person is the same with Lupus and mine seems to not like my liver. I get only a faint butterfly rash on my face and it comes and goes. I’ve had times where I’ve slept for two days straight and taking a shower means I have to nap afterwards sometimes. I’ve been delayed being put on Plaquenil because of the liver issue that isn’t an issue.
This is my Rheumatologist’s catch-all for my other symptoms.
I have chronic pain in my whole body. I have it really bad in my joints from lupus and fibromyalgia. I’m currently undergoing some nerve therapy shots to my back, hips and SI joints.
My migraines have plagued me since I was in my early 20’s. I got my first one about a month after a bump to the back of my head. To this day my migraines still occur in that spot. I’ve written a blog about the story of my migraines. My current treatment is receiving Botox. You can view that here.
But I am sick, a diary of my invisible illnesses …
Journey with me … mini2z