but then....

I didn't want to mar the description of our Australia trip or take away from the message that you can still live your life even with chronic illness, but when we got back my health failed spectacularly. 

The day we arrived home I went to bed and developed a 103 fever. The Drs thought it was a virus I picked up on my trip. After a week of 103+ fevers it broke. But then the oddest thing, it kept spiking. I'd be ok during the day and then it'd spike to 102, then the next day I'd be ok in the morning and it'd spike to 101. It was so odd and just wouldn't stop, so I requested lab work. 

Now, if you've never had a Dr call you and tell you to go the emergency room immediately it is an experience I'll tell you. 

I was not overly concerned, being so used to health issues, but the lab test results showed and obvious infection somewhere in my body. I figured I'd get some antibiotics and head back home. That is not what happened.

To save you the drawn out process of 2 CTs, an ultrasound and countless vials of blood and an ER Dr telling me "you don't look sick", I'll jump to the finish line. Apparently, my appendix had ruptured. Isnt that deadly you may ask? Yes. Yes it is. Luckily my over active immune system did something good this time and walled off a good amount of the infection into an abscess the size of a tennis ball. My abdomen was full of fluid and infection still but the abscess helped contain most of it. My spleen was 3 times it's normal size and my intestines and tissues were so swollen they couldn't even find the appendix, and while surgery is the normal course of action in this case the infection and swelling were too much for them to risk opening me up. 

An abdominal drain, 6 days in the hospital on 24 hr IV antibiotics, countless more blood tests and several more CTs and I got to go home. With the drain still hanging out of me. 

I don't remember a lot of it, I was really  very sick, but I do know that it was almost 6 months before I felt completely back to normal. 

After about 3 months they did surgery to remove my appendix. After about 5 months they put me back in the hospital and under general anesthesia for suspected intestinal blockage, and sprinkled in there were a few more ER visits. 

The funny part is now the Drs aren't even sure it was my appendix! What was it then you ask? They have no idea. They checked my intestines, ovaries, uterus, stomach etc etc and found no obvious rupture. So, I now live with the Drs recommendation that if I get a fever I go directly to the ER. Meanwhile they sprinkle in tests here and there also....2 more coming in June! One that takes 4 hrs. Ugh. 

Anyway, I am healed mostly and all I can say is that I am beyond thankful this happened here and not on our trip. Not because it would have sucked to be sick away from home, but because it would have ruined our amazing trip! There's always a bright side. Sometimes you just have to look really really hard. 

Feeling alive again downunder

In February of 2024 I had the unbelievable privilege of going to Australia with my daughter, her friend and her friend's mother. It was just the four of us and we went to go to a concert(Taylor Swift-dont judge me lol). I did not really care about the concert (it was FANTASTIC though!) but a chance to spend 8 days in Australia with my daughter really appealed to me. And it appealed to us to give her this once-in-a-lifetime experience. As I'm sure you can imagine it's a difficult trip. We happen to live in Hawaii so the flight is actually not that bad, but being on my own with my daughter in a foreign country without the help of my husband was daunting. 

Now, I absolutely love to travel. It is probably my favorite thing to do in this world. In this life. It always has been. I traveled extensively and constantly before I had kids for many many years all over the US, all over Europe, Canada, Mexico, etc. Once we had children, and I got sick, travel obviously got pushed to the back burner, but we still took our trips to Hawaii (where we had our families with us) and little trips to some other closer places. Lately travel has not been on the agenda for financial and health reasons, so this was the first big international trip I had taken in over 15 years. I was beyond ecstatic, but that excitement was definitely overshadowed by abject terror. I honestly wasn't sure if I could physically do it. 

About 2 days before we left I had a date with my son because I wasn't going to see him for those 8 days. We went out to the arcade and to miniature golf, all the things 11-year-olds love. Luckily here all those things are available at one mall. However, I got seriously ill at the mall with one of my usual problems which involves projectile vomiting and severe abdominal pain. I am no stranger to throwing up in random public restrooms, but it really brought to light the fact that I was going to be so far from home. Even just driving home from the mall proved to be challenging that day and that was after a whole lot of trying my hardest not to have to leave at all so my son could enjoy his day, while simultaneously throwing up in 4 different bathrooms. On a positive note I now know where allll the bathrooms are at that mall!

I remember lying in bed with my husband that night telling him that I was so scared and I didn't know what I was going to do if my health seriously failed me a 10-hour flight from home in a foreign country alone with my daughter. The fact that there was another adult there who was a good friend was obviously of some comfort, in fact she and I met for breakfast to discuss what I needed and what to do if something should go wrong with my health, but I always tend more toward not wanting to rely on my friends when it comes to my health. And I especially didn't want to ruin their trip with my health.

Now, before you think I'm complaining, the reality of life is I got to go to Australia with my daughter for a week. 

But what I do hate about chronic illness is the fact that it makes you rethink your wants and desires, it makes you rethink what you are capable of doing, and it really makes you doubt yourself. That's exactly what it did in this case. 

I have always been a very capable person. I was very independent, sometimes to a fault. I still use the words " I can do it myself" far too often. I honestly prefer not to rely on other people, not because I have some great fear they'll let me down, but just because I am capable person and I don't really like to inconvenience other people. My husband told me one time that a main part of my personality is not wanting to be a burden to anyone else. And unfortunately I think he's right. So of course hello, multiple chronic illnesses that make me overly dependent on others! Think the universe was trying to teach me something? I agree. So it annoys me that when the subject of Australia came up my first thought of course was: Can I do this? And even more frustrating was I didn't feel confident in the answers. However, I also felt that this was an opportunity that I could not pass up. Because of our friends we got plane tickets super cheap, and because we could share an apartment the lodgings were inexpensive also, so the trip was actually inexpensive. For a once-in-a-lifetime experience. I could not pass it up. My daughter deserved it, and my husband and I really wanted to give it to her. 

So I said yes, I committed and I tried to think about the trip just in a matter of fact way. This is what we were doing. Until those two days before we left when that experience of course brought my illnesses right back to the forefront. What if I get this sick in Australia and I don't know where I am and I can't get myself back to where I need to be? What if I'm there alone with my daughter and something happens to me?...... The what ifs of life right?

But obviously we went. Luckily my health stayed somewhat stable and the way we organized the trip made it very easy for me to take care of myself properly. The trip was beyond amazing. It could not have gone better, it could not have been more fun, we could not have had a better experience. Honestly. My daughter and I had such an amazing trip, time, experience. The concert was incredible. The country is incredible. Thankfully, my daughter and I are very close and we just get along so well and it's easy to be together. It was so much fun to even just do nothing with her. She will tell you and I perfectly agree that the best day was the day that she and I (our friends had gone off on their own) just took off from the apartment walking with no destination really in mind. We stumbled upon a botanical garden, two museums, an interesting pig statue and the Sydney Opera House where we had snacks and drinks overlooking the Opera House and Sydney harbor! Through trial and error we learned to navigate the subway and we even went to an open house just to see what life was really like living there. It was one of the best days I've ever had... It was worth the entire trip.

I wish I could say the worry was for  nothing but it's really just a part of life for anyone in this situation right? There has to be extra thought, extra planning. We can't just go where and when we want. But this trip definitely reminded me that I CAN do these things as long as I do that extra planning. It made me feel truly alive as Kim for the first time in awhile and reminded me of how much I love experiencing new things. I hope I can keep remembering and continue to find things that make me feel alive. Because I think too often we get caught up in just surviving these illnesses and we forget how to actually LIVE. 

I'm baaack!

Hi! Aloha! I'm back! I don't know if anyone is even going to see this or is still listening, but I am back to talk about life and chronic illness. I don't even really know where I left off. The last couple years have been kind of miserable from a medical standpoint. Last year was especially difficult with new things, not even the same old ones I've had! But let's sort of start at the beginning. 

One of the reasons that I disappeared was because it was discovered that my thyroid hormone was way off which is actually why I was exhausted, gained 30 lbs, my hair was falling out (remember that post?) and why my sodium was low!! I was really quite sick and not understanding what was happening. 

I take a supplement called biotin that apparently affects the thyroid testing. I have been on thyroid medication for 28 years and no one has ever mentioned this to me before. I finally got a new endocrinologist who mentioned it and did something about it. That was a great few months, until the tests started coming back wacky again and they started changing my dose again. Your thyroid is responsible for your metabolism, so every time they make a change in my medication it changes my metabolism. Meaning: my energy level, my ability to sleep, my appetite, my weight, even my skin and hair. Everything. 

This all started back in 2021, so for the last 4 years I've been on a roller coaster of thyroid medication and therefore metabolism changes every 10 weeks. So I have short periods of time where I feel good, then I have periods of time where I feel awful, then I have periods of time where I'm in between, or have good days and bad days. Lots of bad days.

When you been dealing with a health issue for 28 years, you kind of get to the point where you really just want the doctors to listen to you about it. Right? I'm not crazy for thinking that am I? I do feel like my current endocrinologist listens to me, but I don't think like she is believing me, even though I've been dealing with this medical issue longer than she has been a doctor. 

Where she is skeptical is that I do not believe that the lab test they are using is accurate for me. This is not unheard of, this is not a one-off, this is not a one in a million, it is possible for the lab test to be inaccurate for many reasons. One of those was the biotin clearly, but there are several others. So I made a chart for her showing my thyroid medication doses compared to the test results and it clearly shows that the test numbers really don't change even when my dose is adjusted, sometimes by a lot. So, while being as polite and agreeable as possible, I'm trying to have conversations with her to explain that I have symptoms at a certain dose and do not have symptoms at another dose and with both doses my test results come back the same. To me it makes perfect sense that you would put me on the dose where I don't have symptoms right? Well as it turns out in Western medicine no. The test is God and cannot be overruled. So that's where I currently stand. Hopefully I will have more news coming soon about this, but I'm not holding my breath. Meanwhile I'm losing time with my kids and husband and struggling through just daily life. 

But c'est la vie of a chronic illness sufferer (survivor? I don't really like sufferer...)

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!

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

Hope is a funny thing. People tell you all the time "don't lose hope", "you've got to have hope", but I feel like those people don't understand what it's like to have your hopes continuously dashed and destroyed. After 10 years of illnesses, surgeries, tests and medications, and multiple setbacks it's difficult for me to harbor any hope. It's not that I don't have it, it's that I don't want to have it. I actively try to keep myself from hoping anytime a new treatment or promise comes to light. I've been disappointed too many times, so now things that give me hope just piss me off. That's sort of how I feel right now. I know what the test results say. I can read them and I can theorize what they mean. I can research in medical journals, I can use the knowledge I have and come to some sort of understanding of what is happening or could be happening, as well as how to help it. But over the years I've learned that this knowledge and expectation, when I can read something and know scientifically what is happening and why and what should help it but then it doesn't, is just more damaging. 

So after one conversation already with an endocrinologist, one with nephrology and 8 more vials of blood, I still have to wait a week to discuss the diagnosis and treatment plan. 

I will have another conversation with a doctor whom I've never met in person and we will talk on the phone about these latest lab tests that came back wrong. I know what these lab results mean in terms of the physiology and pathology, and I know what the treatments are for these issues, but what I don't know is how this particular doctor is going to react and feel. Is she a doctor who errs on the side of caution and will give me the full blown treatments? Or is this yet another doctor who will tell me that everything is okay even though you can't function or get out of bed. So, yet again I feel like my life is in the hands of this one person whom I've never met, who doesn't know me at all, and will decide whether or not, and how to help me. You can see now why I don't want to get my hopes up. I'm fully expecting the doctor to say don't worry and send me back to my life feeling awful and unable to function the way I want to function with a bandaid treatment that doesn't cover the wound.

That old phrase "hope for the best but expect the worst" has for me now become "expect the worst and be pleasantly surprised if it doesn't happen". 

Yeah that's my melodramatic mindset right now, but it's the truth.

Strictly just a medical update

True to my body's hatred of me a new issue has come to light. Went to rheumatologist yesterday and my lupus markers continue to be a problem so my rheumatologist is making me go back on the lupus medication I used to take- hydroxychloroquine. I no longer have the choice of holding off without doing actual damage. She ordered it right then to be delivered to my house - almost like she doesn't trust me.. lol.

Blegh. That's the med that makes me puke almost daily. 

But she is "very concerned" about my sodium levels. My blood sodium has been low for some time even with sodium supplements 4x a day, pickle juice daily (I buy it by the gallon off amazon now) and Gatorade and hydration drinks daily, plus a prescribed medication that's supposed to actually increase blood sodium.... My other drs have been kind of like "I don't know why it's doing that" and that was it, which yes was super annoying and I had already planned on talking to my primary care dr about it, but this rheumatologist noticed it and is worried, ordered more tests and is sending me to endocrinology for evaluation, my appt is thurs. The tests she ordered came back really high so it confirms her concern. The endocrinologist ordered more for me to have done before my appt. 

So we'll see what endocrinology has to say... More on this later! 

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!

Diagnosis update!

 

It’s been a bit since I’ve posted and mostly it was due to medication ups and downs as well as the holidays. But I’m back and the news is good! I hit a slight bump in the road, but as soon as we’re over this one we’ll be back on track.

Having had more testing done my Neurologist and Rheumatologist have agreed on a final accurate diagnosis. I bet you didn't even realize I didn’t have one, huh? It’s true, this surprised a lot of people. But the reason I couldn't get helpful treatment was definitely affected by the fact that they didn’t know exactly what was wrong and why. We had a broad spectrum diagnosis and some ideas but now I think we've got it all.

So this particular journey that started in November 2017 with a complete neurological breakdown has come full circle to a diagnosis of Lupus with Autonomic Neuropathy. That’s the big diagnosis with little ones branching off, of course, like they do when you have an illness, especially autoimmune. So, yes, they finally officially put the Lupus stamp on me and acknowledged that it was the cause of the neurological and other issues I’ve had for 3+ years. These were the issues that were the most debilitating: muscle weakness and fatigue, the unrelenting leg pain, lightheadedness, the brain fog, low blood pressure, dizziness, lack of balance etc, etc. These are what has kept me basically bed ridden for 3 years. 

The move to Hawaii helped many things; because of the inability of my cardiovascular system to adjust quickly to temperature, the temperate climate here is perfect. My overall pain level is better and more consistent of course from the warm weather, so I can do more active things, my stiffness is better, as well as the Raynaud's symptoms. 

The thing it didn’t get rid of was the feeling I would collapse at any second. Feeling like I had 100lb weights tied to all of my limbs while also being dizzy and lightheaded. Like constantly being on a boat filled with jello in choppy seas. You can see why I had a hard time getting out of bed. 

We left off last time on the adderall and ritalin train. I am still taking ritalin, but it made me feel like I had energy but my body couldn't use it. Like all it was doing was helping me push through the weakness and fatigue and dizziness, not actually helping them. Preferring to treat the actual cause/issue, back to the neurologist I went. 

I should interject here that my husband is a genius and gifted at interpersonal relationships in the workplace. He suggested that I get more personal with my neurologist and tell him that I needed his help and that he was my partner in trying to spend more time with my children, and to really explain emotionally what I was fighting so hard for, that being my kids and husband. I tend to stick with the facts and the science, so this was a new approach for me.

 I think it worked like a charm because from then on my neurologist gave me every test I asked for and seemed to listen to and answer my questions more without hesitation. He explains things to me rather than just saying yes or no, and for me personally that is huge. My personality is to want to know every detail. Once it's in my head I can't stop until I fully understand what it is and why. Once I have the answer I will stop bugging you [ie my drs]. But until then being my Dr is probably quite annoying. I want to know the pathology of every disease I have and the underlying physiology of why I’m taking a certain medication. Just “it should help raise your blood pressure” is not enough. I need to know how, and I will go all the way to how certain parts of the body function at the basic cellular level if needed. So, yeah, annoying, right? 

But it all led to this final diagnosis and treatment that may actually help after 3 years of really just neurological hell. 

I’m not cured obviously, and lupus is in itself a tough diagnosis with many complications and concerns, but my entire motivation and goal through these last years has been just to get a quality of life back. In all honesty I didn’t even care anymore how long or short that life was, as long as I was able to live it. 

Then Lupus with autonomic neuropathy and sensory ataxia came into my life. I can treat something when I know what it is! I can adjust whatever needs adjusting, I can change my diet, take medications or have surgeries- there are possibilities again...And that feels amazing. 

It also brought a slippery slope of hope that can be a very dark place to be. But that will be a different post. This is just an update. 

So! I now take a new medication that increases my blood volume, in addition to a medication to constrict my blood vessels. Those seem to have stabilized my blood pressure which has helped the weakness. It's almost been a complete game changer. I have gone weeks now without the muscle weakness, the feeling I'd collapse or walking through molasses with weights tied to my limbs. Weeks! For the first time in over 3 years! It's almost too good to be true...

Then, I broke my neck. So we had to take a little detour through that little hiccup. 

Medications and perspective

 All aboard the adderall train! 

I tapered off ritalin, waited for a week or so and began adderall. Adderall thankfully is only one dose per day so I don't have to worry about the ups and downs and timing of doses. And where ritalin was increased every few days, adderall is increased once per week. So there's a lag basically. It's odd because the first 3ish days the side effects were awful, bed ridden about to puke with a splitting headache and anxiety in my chest kind of awful. So much Dramamine involved…

I even asked M at one point "how many days are we giving adderall before we call it?" 

"As long as we need to." Ugh he's right. 

I was ok in the mornings to get the kids through school. But that meant single dad after 2 or 3 for almost 3 days. 

After 3 days they started to subside. Thank goodness because with some meds the side effects take weeks to level out. During the side effect days I definitely felt like I had more energy, but then it started to diminish the rest of the days last week. So, I increased my dose this morning. We'll see! I still need to increase 2 more times (so 2 more weeks after this one) to get to the recommended dose.

These meds are a roller coaster to my emotions also. Moving to Hawaii was one of our "last resorts", stimulants was also a "last resort" that ultimately, according to my California Drs, was out of reach. So now I'm refocusing my eggs into this one basket. Again. This is where the "what if?' train departs from. 

What if it's a fluke that I felt a little better?

What if adderall also doesn't work very well? What then?

What if this is just my life? 

Fun questions all of them. But the answer I have to give myself is in the wise paraphrased words of my husband M: "if this is it we'll deal with it. The important thing to get through this is your attitude." 

Told you he was wise. 

So again I am the "focus on the positive girl" . It's getting harder as the years go by, I'm not going to lie, but hey I walked my son to school and back a couple of days ago and halfway there today. In beautiful warm weather I might add. I'm coherent enough to write this right now. And most importantly we are all healthy in the face of this pandemic. Sooo, so what if I only get 4 usable hours out of each day? Life is pretty great really. It's all about perspective.