Living One Day at a Time
I'm a mom, wife, friend, sister, daughter, chronic pain and illness sufferer getting by one day at a time. There's a unique reality that people in chronic pain and their caretakers live in that requires support, commiseration and a damn good sense of humor just like everything else in life. Enjoy, "follow" me and please COMMENT! 😁
Wednesday, September 24, 2025
guilt, fear and volunteering
Tuesday, September 23, 2025
tossin paint
Wednesday, May 28, 2025
but then....
Feeling alive again downunder
I'm baaack!
Tuesday, May 3, 2022
Holes full of depression
Well It has been an interesting several months of trial and error. One of the benefits of our move and of quarantine for me has been to be able to try different treatments while not having to worry as much about traditional things I would need to be doing like shopping, kids sports and school etc. If I try a treatment and it backfires and makes me really sick for a few days it's okay because my husband is home and the kid's don't have a lot of extracurricular activities. This trial and error can lead to consequences though, some of which I may not even realize are happening at the time.
One of the medications that I was prescribed was helping my sodium level and my blood pressure, both of which have been an ongoing issue, but it was a steroid. You may have heard the term " 'roid rage" which indicates that people on steroids can become more emotional and angry. No this didn't happen to me, but what the steroid did is flare up a severe depression that I didn't even recognize at the time. I stopped taking this medication because I gained 17 lb in a matter of a few months which was all water. The fact that it was all water was mainly the issue because when you have that much excess water in your body it can do damage to your organs, so my doctors reduced my dose. It was also tearing up my stomach. I have severe gastritis that I got from taking too much ibuprofen, oops, so the steroid was just tearing up my stomach severely (it is a powerful anti inflammatory, so it has a similar effect as ibuprofen [nsaids] on the digestive system). But the worst and most pervasive side effect I didn't even realize was happening until I came off of the medication. That was severe depression.
Shortly after reducing the dose I realized that a smaller dose did not help my symptoms as much and all the side effects were still present, so I decided to just stop the medication. Once I did this I realized how it was affecting my mental health. I was just sort of wandering through life with an apathy that's hard to even describe. So while physically I felt better and stronger and could maybe do more, emotionally and mentally I was so withdrawn that now I didn't WANT to do anything, which had never been my issue before. Either way the end result was the same, I couldn't participate in life. But at least when it was my physical symptoms keeping me from activities I could still enjoy my kids and my life, just maybe from the comfort of the couch or my bed.
So that's where I have been for the last several months. I have been crawling my way back out of this hole, more slowly than I would like, that the steroids threw me in and finally I'm starting to feel like myself again. I've been outside in the world more. I've been socializing more. I've felt just overall emotionally and mentally stronger.
But now where does that leave me physically? The way that this medication works for my particular neurological disorder is by raising the level of sodium in my bloodstream and increasing blood.pressure. My sodium is chronically low (hyponatremia), which can be very dangerous and which also plays a role in my orthostatic hypotension (blood pressure drops too low when I change positions). So, now that this medication was no longer a viable option I have been working with a nephrologist (kidney doctor), my neurologist and also an endocrinologist. My neurologist is new and younger and coincidentally went to medical school, and used to work with, my nephrologist. That association has actually made my life much easier because they have the ability to speak behind the scenes about treatment plans etc. My nephrologist has been a saving grace in this entire situation. He is very interested in explaining the mechanisms that are responsible for certain symptoms which often leads us to a treatment, sometimes unconventional, to try. We also have discussions about studies and other options for treatment. But most importantly he looks at the big picture and pays attention to balance in my body. So he has been instrumental in figuring out supplements, doses of sodium supplements, hydration levels, and treatments that may be unorthodox but that actually will work. It has been amazing to work with him and has done wonders for my spirit.
So, now through him and my neurologist I am on a different medication that is supposed to stabilize my blood pressure. It's not raising it at all which I find interesting, but it does appear to be stabilizing it so that when I stand up I don't feel like I'm going to pass out or that the room is spinning. I feel stronger and more alert, but not all of the symptoms are gone, and the medication appears to cause sleepiness which is not normally an issue for me. I've been combating the sleepiness by adjusting other supplements as well as when I take the medication and whether or not I take it with food for maximum absorption, etc etc. And that has landed me to where I am now. One of the major things that's been discovered through all of this is my inability to eat enough food to sustain my body and my blood pressure. I'm sure this comes as no surprise to any of you that know me. So, I have been adding protein powder and nutritional supplements to meals, eating bigger meals on a very regular basis, and paying close attention to when I eat and when I take my meds. I still desperately wish they would make a "food pill" to make all of this easier, but until they do, constant management has been necessary and unpleasant. All of these things seem to be helping as I have days where I feel strong and actually good. In general I have very rarely had a day in the past 5 yrs where I can say I feel good. I have days where I feel "fine", I feel "okay", today is a "tolerable day", today is "better than normal", but to actually say I feel good or I feel great is so unbelievably rare that the first time I said it a few weeks ago was very eye-opening for me. I realized that those words are so rare normally for me, but that something about this treatment plan hs been working enough for that to actually happen. And more than once even!
Now, the question and key is consistency. I have days where I can barely get out of bed still; I have days where all I want to do is sleep and some where I do sleep for 18 to 20 hours; then I have days where I feel good or great even and wake up early, function all day like a normal human being, have a good amount of energy and just overall actually feel good. Why the huge change from day to day..... is the million-dollar question. That's where I'm at right now, trying to figure out what is happening and why. So here we go!
Wednesday, March 31, 2021
Vanity and hair
This is an interesting topic that I never thought I'd spend so much time thinking about.
I would never describe myself as a vain person. I don't wear makeup, I don't care about fashion or clothes, I cut my own hair and never spend much time doing it... Until suddenly I started to lose my hair....
It's a common symptom of Lupus, nothing unusual but when it started coming out in clumps I started to think more about lupus treatments. Isn't it funny that when my lab tests were showing that my kidneys weren't doing what they were supposed to I wasn't nearly as motivated to get treatments. And eventually I even stopped treatment because it was making me so nauseous.
The treatment did stop the clumps of hair coming out in the shower and just in my hand if I ran my hand through my hair at any given time. Because it did help it, I forgot about it. I had a lot of hair so it still looked fine with the amount I'd lost. Then I stopped the medication and the clumps came back. And they kept coming and coming until I noticed bald spots and my hair became noticably thinner and you could see my scalp more and more.
And I started to think more seriously about going back on the treatment. I found that particularly interesting being someone who had never placed much stock in her appearance, that a "vanity" became motivation. I had conversations with myself about " throwing up vs being bald" over and over again.
I didn't start on the medication again for that reason. My Lupus labs started to become and issue and I needed treatment, but it was definitely a plus!
So was I not vain because I had good hair and never had to think about it? Or was I just so fed up with everything these diseases have taken from me that my hair was the last straw?
I don't know the answer, but I do know I have more vanity than I thought and maybe vanity come more into play when we want something we don't have? Just an interesting observation...
Expect the worst then you won't be disappointed
Thursday, March 18, 2021
Strictly just a medical update
Sunday, February 28, 2021
Broken neck detours...
I feel like I need to clarify something. As excited as I seem over this diagnosis, it's been coming for some time now. I've been testing positive for lupus for 3 years now. And most of you are aware that I went to the Stanford Neuroscience Autonomic Nervous System Clinic and saw one of the top specialty physicians I'm the country for. He is the one who diagnosed "cardiovascular autonomic neuropathy". That was almost 2 years ago. So, it's not that I didn't have a diagnosis per se, it's that there was still investigating going on and testing. there was always something more to test, more to narrow down, more medications to try in a diagnostic manner. And as excited as I seem over this diagnosis, the real excitement for me is just to move on from the phase of tests, and questions and new drs. This changes absolutely nothing about my treatment or symptoms.
Several of the problems that I have can only be treated symptomatically. Meaning there's nothing you can do about the cause of the problem but you can treat the symptoms. So because of the age of 44 I have urinary incontinence, lucky me, I have to see a urologist to try to figure out how to manage that. Because my blood pressure and my heart rate are not regulated by my brain I need to see a cardiologist and I need to take medication to help those things happen etc. This is the autonomic Neuropathy side of lupus.
So it's not as stunning as it seems, sorry. Lupus is not good news and I do not mean to belittle it in any way. Lupus is a scary disease. It can cause my kidneys to fail, and we know my kidneys have already started causing me problems, and it can cause the neurological issues mentioned above along with many others including lack of balance, dizziness, numbness. And my hair loss, which frankly is really pissing me off, not to mention a great deal of pain and fatigue. So I don't want to make light of this diagnosis. It just feels to me like I can start a new chapter with a clean slate and the Drs I currently have and really get to the work of figuring out how to manage my symptoms through exercise, diet, medications, supplements, hydration etc. Which is where I excel…. if I do say so myself.
Now on to the broken neck. I know it sounds hilarious which is why I put it in the last blog post, but I didn't obviously break my entire neck. Because that would cause a lot more serious problems than just a lot of pain. What I did was break a piece of calcified ligament in my neck in my spine. The neck spine is called the cervical spine or the c spine. It stretches from the top of your shoulders to the brain stem and they are numbered. Many of you have heard of the cervical spine because it is always where these heinous injuries you hear about where people are paralyzed etc take place. Those injuries are to the actual spinal chord further up around C2-C3 (C1 is the very top at your brain). Mine is not serious, it is at C5-C6 which sits at the top of your shoulder. So it just causes a lot of pain. There is a joint at the back of your spine called a facet joint, it is the hinge joint on each vertabrae that lets you bend your neck forward and back to a certain degree(if you're really interested- feel the bumps on your neck/back- the facet joints are on either side of each bump). That is where I messed myself up, and apparently there was already damage starting there just because I'm old. They also found that my ligament along the spine is turning to bone, it's called OPLL, but that's an issue we'll think about in the future. I have enough stuff to worry about right now. It is technically caused by ankylosing spondylitis in my case, but I'm told you don't have to have AS to get it.
Anyway, 4 days ago I had a fluoroscopic injection, which is a steroid injection under x-ray directly into the spinal facet joint. It has to be under continuous xray so he can see the needle and exactly where it's going. I've had these before several times in my lower spine before I had the surgeries to fix that area, so it really was not a big deal. I am happy to say that 4 days later the pain is starting to subside.. But hey that's what I get for turning my head to the left. Yep that's right, that's all I did was turn my head to the left to look at my son and crack couldn't move my neck after that and we started finding people to watch the kids while I went to the ER. Yes it actually warranted a trip to the ER. If you know me you know that I will do everything I possibly can to avoid a trip to the ER so that should tell you just a little bit about how much it hurt. Man that was painful. So now neck muscle strengthening exercises have been added to my PT and we can get back to the real issues!