guilt, fear and volunteering

Somehow I've gotten myself in the position that I am the team parent for my daughter's softball team. Okay, I know how I got myself into this position. It's because I feel guilty all the time for not being able to do all the stuff that other parents do and they needed a team parent and no one was volunteering and...... Here we are. Most of it is just online stuff sending out messages to all the parents, keeping everything organized, streaming the games on the app on game days. So, so far I'm fine. 

It actually makes me wish I could do things like this more often, but it also makes me realize that unless things are within specific parameters, like everything being online that I can do from my phone while I'm in bed, I can't commit to it. I'm currently sitting here staring at a sign up genius page for my son's Country Fair at school trying to figure out how I'm going to feel on Friday at a specific time to see if I will be able to volunteer. And if you're thinking "well, how are you possibly supposed to know how you're feeling on Friday?" That is exactly the point. I want to volunteer, I want to help at his school, I really actually enjoy helping at their schools and for their sports teams, but when I have to plan in advance and commit to something, it's terrifying for me. I'm not complaining right now, so much as just saying that it's unnecessarily scary to be asked to commit to something in the future. And I don't think that that's necessarily something people think about in terms of chronic illness. People are very understanding with me about things I can't do in the present moment, or things that I just know I cant do now or in the future, but when I say things like I don't know, or I have to tell you that day, then they don't quite get it. They try, I'm not complaining at all about any of my friends or any of my children's organizations because everyone has been just unbelievably helpful and caring when I tell them my circumstances, but the fear of letting people down is my point here. I think. I'm never really sure what my point is, but today I think it is the fear of letting people down. I have this tremendous guilt of not being able to do these things, but I also have this tremendous fear of committing to things and letting people down. Which is worse? Can I have secret option 3? 

tossin paint

So, some of you probably know this but one of my absolute favorite things to do is home improvement. I love design, I love making a space look prettier and nicer or making it more functional. I love challenging myself to fix things myself in my house rather than hiring or asking someone to do it for me. It is literally one of my happy times. Now because my body is such a failure at everything it takes me a really long time to get these things finished but I'm determined to still do them because they bring me so much happiness. So today.... I'm trying to paint the living room and I've already spent 3 days working on it because I have to work in short shifts before my body gives out. Today I think I may have pushed it a little too far and my hand stooped working while I was holding a bowl of paint. You can probably imagine what happened next. There was paint on the wall, the baseboards, the floor, the chair, literally everywhere. And of course it's not the part of the wall that I was trying to paint but the part of the wall that I had just wallpapered a couple weeks ago. 

This is another thing these illnesses are slowly stealing from me. I realized last week when I was painting that edges are particularly challenging for me know when I used to be really good at them because my body randomly skates and spasms, including my hands and arms. That made me kind of sad but I figured i could at least still paint the room I just needed to make some changes to how I do edges. Today i was so play golding the paint.... I cannot imagine never being able to paint a room again. That would be devastating to me. And I know for a lot of you out there that may seem melodramatic or strange or silly, but I truly love this kind of thing, and I truly love being independent and strong enough to do these things myself. So, the fact that my illnesses are slowly taking away something else that I absolutely love is just pissing me off. There's no nice way to put it. I can't see a silver lining on this one. It's just pissing me off. It just sucks. I've already given in to the fact that it'll take me weeks to paint one room when I used to be able to do it in a day or two, I've already given in to the fact that I have to take breaks regularly when I'm doing any sort of home improvement, I've already given in to the fact that I need to make sure that I eat properly and have snacks and drinks, and i need to make sure I have everything I will need because going up and down ladders and step stools will cut short the amount of time I'm able to work. And I've already given in to the fact that there's some stuff that I really need help with, things I used to do by myself I now need someone's help with. But, I am not willing to give up completely. I'm not willing to just throw in the towel and never do something that I love again. I've had to do that with too many things with these illnesses.

How many more things will this damn body take from me before I even hit 50 yrs old?!

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.

Medications and misery, part 2

 I have finally been to a neurologist here in Hawaii! Because of covid and the closures around medical care I've been putting it off, but it finally came down to a desperate request for a referral from my Dr. She checked in with cardiology and neurology to see who wanted me and neurology said "we do!" 

You may remember way back in June 2019, just weeks before we made the big move over the ocean, I saw the autonomic nervous system dysfunction specialist at Stanford Neuroscience and neurology. Fancy I know. He did a bazillion tests and he declared, though not quite that dramatically, that I had "cardiovascular autonomic dysfunction and orthostatic intolerance. There is no cure, it is generally caused by something else (in my case connective tissue disease -lupus-ey my rheumatologist liked to call it) so treat that underlying condition and it may help it not get worse, treat the individual symptoms with individual specialists, but it is a condition that will most likely get worse." That'll be 800$ please. Ha! He didn't say that but that's what they charged, which honestly for all the tests wasn't that bad! 

But I digress. So because this was mere weeks before we moved I never had a chance to follow up with Kaiser neurology in California and because of covid I haven't had a chance here either. 

Fast forward to my appointment with the lovely Dr P, neurologist extraordinaire. 

I was beyond nervous, maybe anxious is a better word, for this appointment because my battle with physical fatigue is just soul crushing at this point and continues to be a huge barrier to life in general. Many many things have improved because of the move, sadly that's not one of them. I have numerous neurological symptoms as well, and I've learned they come in 'flare ups' also, but the fatigue is by far my biggest obstacle. 

I felt like my life was in this man's hands because there aren't that many neurologists here. If I didn't like a Dr in California I changed Drs/facilities. Here there's one Kaiser main medical offices, with several satellites, and one hospital. So this was it for a neurology dept. There is only one. 

Because of the pandemic I had to go alone. They won't allow anyone to go with you, so I didn't have my wonderful husband to correct me when I say "I'm good! It's not that bad" and say "she's miserable actually but can't seem to say that to anyone" lol. But as I left the house he called out "be sure to tell him how miserable you are, and how you can't get out of bed, and you feel like you have weights on all of your limbs! Love you!"

Thank you honey❤️

So I did. I gave him the rundown of the past 3 years of neurological issues from when they started after a medication reaction. 

He asked me:

"What would you say is your number one problem preventing you from living a normal life?"

Without hesitation "Fatigue. Not sleepiness, I actually don't sleep much, but physical fatigue like I can barely lift my limbs and I feel like I'm wearing a suit that weighs 50lbs when I try to move. Sometimes it makes me want to cry just walking to the bathroom" (M would be so proud!)

"Pain?"

"Yes but I can handle that better than the fatigue"

"Imbalance? Dizziness?"

"Always, I run into walls and drop things constantly and live on Dramamine, but I can handle that"

"Ok, let's try this…."

He offered me three choices: stimulants (ritalin, adderall, amphetamines basically), a medication that is prescribed for MS fatigue and narcolepsy, and a medication to better manage my low blood pressure (in addition to the one I already take). And he offered an MRI.

"Do you recommend an MRI since it's been three years? Which medication do you think?"

And then he said something that almost made me cry:

"I will do whatever you want to do out of those options. And we'll keep trying things until we find something that helps."

IMAGINE having a Dr who's on your side and just wants to help. It's priceless in my position.

We clarified my need for specialists in urology, gastroenterology and rheumatology also and possibly back to physical therapy, and I was on my way to think about my choices…. Sort of in shock honestly. This Dr was more than willing to give me the stimulants I was denied several times in California, stating "I don't know why they did that, we use these all the time for disease associated fatigue, especially in MS", and he offered options I had never heard of or considered. 

After research, of course, and deliberation I chose ritalin. Let's just hit the fatigue directly.  They actually aren't sure how it works, but hey it works so let's go for it. They know it affects dopamine receptors in your brain which are partially responsible for energy though, so that's something. It is normally used for ADD, but in people who don't have ADD it tends to have a stimulant effect. 

And it did! In the beginning the headache was almost insurmountable once the medication left my system about 3-4 hrs after taking it. Taking another dose before that happened worked during the day, but at some point in the day I'm not taking it anymore so the headache was inevitable. Almost all medication has side effects, and they are always worse in the beginning. Sometimes they go away completely, other times they get less severe, sometimes they stay forever. I hoped this wasn't the forever kind and just kept going.

I swam in the ocean with my kids, went to the beach daily with my daughter who's learning to surf, I felt like I could push through the fatigue finally to get where I wanted to go a good portion of the time. It definitely worked.

This medication requires a lot of dose adjustment in the beginning to find the right one. Too much and I was sleeping all day! Too little had no effect and in the middle I felt ok but also extremely sleepy once it wore off ( 3-4 hrs). And while I definitely felt better and like I could "fight through" the fatigue to do a lot more than I normally can I still had it. If that makes sense. The fatigue was still there, the medication just took the edge off enough that I could overcome it. Just like pain medication, it doesn't get rid of my pain, but takes the edge off so I can function. 

So, I wondered if one of the other medications might work better. I didn't want to settle when I had other options to try.

Reserving ritalin to come back to, I asked my neurologist for the other stimulant: adderall. 

"But first there must be a tapered withdrawal from the first one and off of it for a week before starting the new one". 

So, that's what we did. 

Time was the main factor here, in addition to being back to my normal fatigue level. Experiencing this after feeling better for a while with the medication did show me again that it was working, so at least that was good news during those weeks. At least I now knew I had an option that would help me that I could come back to. Maybe it would help as much as I'd like, but my expectations may, just possibly, be a little bit higher than reality permits....I don't know.

Medications and misery

I wish I had a better excuse for being absent so long than "I've been beyond exhausted", and "my nerves have gotten too bad to hold my phone very long", but there they are. 

I feel like I should be documenting my journey of the last two months with new medications though. For those who have chronic illnesses, any chronic illness, medication becomes a part of your daily existence. Thyroid medication, insulin, blood pressure medications, antidepressants, etc. It doesn't have to be some big fancy rare disease. I believe the vast majority of older humans need something daily to keep them as healthy as they can be, so this is not unique to people with these debilitating chronic illnesses. Most people can relate. 

The thing that needs to be talked about more, by Drs and patients, in my opinion is how damaging and miserable medication changes and "trial and error" can be for weeks on end. Sometimes it's worse than the disease itself and you find yourself wondering why on earth you are doing this to yourself. 

For example, albeit a drastic one, in my 20s I had thyroid cancer. My thyroid was completely removed during two surgeries and I went through radiation off and on for almost 3 years. For those unaware your thyroid produces a hormone that regulates your metabolism, the energy with which your body functions. Each time I went through radiation I had to have close to zero thyroid hormone in my body. At that time 20ish years ago they did this by stopping your thyroid supplement pill, since I had no thyroid that means my body had none of this metabolism hormone. I would sleep 20 hrs a day, my hair would be brittle, my skin turned hard and bumpy, any food made me nauseous (and you must be on an extremely strict no iodine diet also), I was freezing all the time and I gained weight each time. 

Now what you may not know is that thyroid hormone takes minimum 6-8 weeks to adjust. Down or up, a little or a lot, you're looking at 6-8 wks minimum. Most people who have thyroid issues have experienced low thyroid numbers or high thyroid numbers. The thyroid test TSH is an inverse test- the more you have the less actual thyroid hormone in your blood. For most a low number would be a TSH of over 5, and a high thyroid hormone number would be less than 0.5 depending on the lab. They would get my TSH to around 40-50. They no longer do it this way by the way. Nowadays I get a handy dandy little shot that artificially raises my TSH to about 100, they take my blood to monitor the cancer markers to make sure it hasn't come back and then my TSH goes back to normal the next day. Isn't science amazing?! 

Anyway, so to get it out of my system completely you're looking at 3 or 4 months coming off of the hormone, the final 5 weeks being the absolute worst, then 3 days in hospital getting my radiation, and then usually "only" 2-3 months building back up to a normal level. These numbers move so slowly toward the end and have to be at a certain point so I would have to go in weekly then almost daily to see where they were, so they could say "ok this is low enough to give you the radiation let's go" ! I became quite close to my oncologist endocrinologist and his staff. 

So 3-4 months up, 1.5-2 months down, wait 6 months and start again. You can imagine the disruption to my life- I had to take time off university, leave my job, stay with my grandmother during the worst of it so she could take care of me…. BUT it wasn't the radiation that caused the disruption and physical misery. It was simply the medication. The medication that is extremely common in our population. My mom takes it, my dad takes it, my mother in law, my parents dog takes it for goodness sake. 

My point is that medication adjustments can be extremely difficult and sometimes worse than the treatment or disease themselves. 

So now in my next few posts I will take you through the latest adjustments and changes and what they have been like.

My world of fear and comfort

Right now is a time of such uncertainty in life. All people (well the smart ones) are actively afraid of sickness and dying, something most people have never really given a thought to. Healthy people keep hearing horror stories of people their age, their health, their similar life dying inexplicably. The "invincible age group" no one worries about normally is suddenly at risk and from a disease you can't see until it's too late. No one is safe from this one. 

The risk of serious infection is higher in people with chronic illness, as is the risk of severity, so it is an especially worrisome time for many people like me. But, in some ways, I believe, this is easier for people with chronic health issues than for the unfailingly healthy. See we are already faced with our own mortality on a startling regular basis, so for many of us it's just another thing to add to the list and another reason to stay in bed. 

But for those used to relying on their bodies to actually do what they tell it to and used to being basically invincible to germs, it comes as not only a mortality shock but a lifestyle one. Suddenly people are aware of what it means to not leave their house for weeks at a time by no choice or fault of their own. Suddenly they aren't able to just hop up and go do whatever they need to. Suddenly they get a small glimpse into what it's like to live inside in frustration and boredom. 

Only these healthy people have the comfort of knowing that they aren't missing out on life because everyone is in the same storm and paddling as best they can. They can commiserate with friends about the frustration and boredom and neverending uncertainty. That's where we differ. Getting a taste of your life coming to a screeching halt when the rest of the entire world is experiencing the same thing is not the same as it happening when the world continues on without you. Imagine it. When your kids and spouse aren't forced to stay home with you. When you know that your friends and family are disappointed and worried and carrying on without you. 

So as crazy as this sounds for someone like me, whose everyday existence hasn't changed as drastically as it has for most of you, this time has been oddly comforting. For the first time in 10 years I don't feel guilty about missing activities. I'm not constantly pushing myself through pain and fatigue just to not let my kids and my husband down, again. I'm not lying here thinking about the life I'm missing out on, what my friends are doing and thinking or what I'd be doing if I could just get out of this damn bed. For the first time in a long time I feel like the world and I are closer to being on the same page and my life of bedridden, activity limiting symptoms isn't so glaringly different. I can finally acknowledge my limitations without making others uncomfortable or skeptical or having them instantly turn into Drs who can cure me. I'm not feeling pressure to say yes to doing things when my body is screaming no. I can commiserate with the rest of the world for the first time and they can commiserate with me! I have to say that part is kind of cool….

Mind games you can actually win

M, B and I spent this afternoon at the small tide pools made from lava rock at the South end of Kailua beach. It's a serenely active and beautiful place as it seems they all are. We went today so our animal, bug, all living thing obsessed 6 year old boy could hunt for crabs, snails, urchins and anything else he could find. He even found a centipede today.

I grabbed my chair and my bag with book, meds, snacks and sunscreen that goes everywhere with me and planted myself at the edge of the rocks to watch them climb and hunt while I listened to the waves as I read. 

Some days that's my ideal activity, some days it's good because at least I'm participating in the periphery of my family's lives, an observer, but today it just wasn't cutting it for me. This happens and many times I can't do anything about it but wish I could participate and be grateful to at least not be in bed. Today wasn't one of those days. But, I wasn't entirely sure I wouldn't get stuck halfway around the point and not be able to get back, so I broke a pain pill in half (important information for later) and read for about 15 mins before I finally just said "screw it" actually out loud. Though maybe in more colorful language for those who know me well. 

By now M and B  had hiked the rocks along the shoreline around the point and out of sight. So I followed. It wasn't an extraordinary effort or particularly difficult walk/ rock climb just one of those things my knee jerk reaction is to say no to because it's been so many years of not being able to do active things. I've been conditioned over time that it will be painful, debilitating for days after, too difficult to even finish, I'll hurt myself even worse with my deteriorating joints, yadda yadda. I'm sick of it, but it's life. 

But today over the rocks, and around the point I went, damnit. Nothing overly exciting to report for the average person, but things like this carry much more weight with me than with the average person. I have no injury or even increased pain to report. 

After a couple of hours a the tide pools and beach, we decided to spoil our son with McDonald's because his big sister was at a playdate. My husband drove the 5 minutes it takes to get there on our way home and in this short amount of time I was vividly and forcefully reminded of my (pre-quarantine) routine and requirement of never taking

pain meds and being in a car too close together in time. Holy nausea Batman. 

See my lupus med interacts with my pain med and makes me incredibly susceptible to movement and dizziness. On land it's generally easy to mitigate or even unnoticeable, but in a car it becomes an extreme level of "car sickness". And when I say extreme I mean "leapt over my friends toddler on the way to the bathroom once as I ran from my car into my house as soon as I pulled into the driveway leaving my daughter in the car to bring in the rest of our stuff" extreme. Today that extreme led to asking for a large empty cup at McDonald's to throw up in and walking briskly from the car to our bathroom when we got home. It is a 4 mile drive that took 15 mins including the drive thru.  

BUT, the lesson here that I learned is that all those times people and psychologists tell you to "turn around negative self talk" and "positive self talk is important in mental health" but "you need to practice it" are totally right! Who knew? I've been making an effort to practice this for years, ever since a psychologist friend told me many moons ago to have compassion for myself and to "never say anything to yourself that you wouldn't say to your friend".

As I literally sat on the floor of my bathroom assessing a second wave of nausea and vomiting my first thought was an unhappy "this is the price I have to pay for wanting to spend time with my family doing something fun and active!?" and my brain almost out of my control said "no, you GOT TO climb on rocks and hunt crabs today with your amazing 6 yr old son before your body gave up, because let's face it- it could've easily and has happened on a day where nothing fun preceded it. At least you got to do what you wanted today". 

So I guess it works. This was the first time it happened so quickly and automatically so we'll see if it ever happens again, but it was kinda cool. 10+ years in the making but cool nonetheless. Trust me I was as surprised as you are. 

**Addition- a few days later I have decided I just cannot tolerate the lupus med constantly causing this so I am stopping it. We'll see in 3 months how my kidneys feel about that! Fingers crossed!**

Fantastically overexerted and sunburned

**this is a post from a week ago that I forgot to post!**

Today I probably overdid it. And it was fantastic.

I proved to myself I could do something active with both of my kids on my own. I met a group of other moms with young children who were fun and kind. I spent 5+ hrs at the beach. I remembered why we moved here. All in one day. 

It's almost harder, emotionally, having bad days here. When I get into the blackhole of a flare up that seems neverending doubt doesn't just creep in, it bulldozes its way through my heart and head. 

"Why did we move here if I'm still stuck in bed"

"I uprooted my kids and husband's entire lives for nothing"

"This was our last hope. If I feel awful here it's never going to get better anywhere"

You get the idea. I believe I've mentioned it.

It's been difficult getting myself out of this spinning during the pandemic where I can't go out and do anything or enjoy friends to show myself "see- you can do more!" 

And having M home all the time, while incredibly fun, hasn't allowed me to really stretch my wings and see what I'm capable of without his strength and unwavering ability to take care of the kids when I can't. The quarantine has also really screeched to a halt our friend making efforts. I had as of this morning not been able to find a moms group online, or meet very many through the kids' school, and all moms need a group of mom's to laugh with, spend time with, complain with and depend on. A tribe they tend to call it. Or a village. Here it can be called ohana, but it all means family outside of blood. This mom time was something I valued even more than I realized in California. I had, and still have them, an incredible group of mom's who did nothing but make me laugh, help me when I needed it, trust me with their children, take care of mine and surround me with warmth and love no matter what kind of physical, mental or emotional shape I was in. Women's friendships are unique and difficult to translate to men, and mom friendships are another level of soul nurturing. That may not be the correct phrase for it but it really does feed and calm the soul to even just know these friends are out there supporting you. Whether it's extra snacks at the beach or park or just the text reminding you tomorrow is pajama day at school these friendships run the gamet of support and commiseration. Maybe it sounds dramatic to some but I can guarantee every mom has or should have a tribe, village, playgroup, mom ohana, whatever you decide to call it and wherever it comes from.

Today I got to be a part of a friends tribe here on island. It was so fun and relaxing and just felt like normal life again. Several mom's doing nothing but talking and laughing as countless kids were playing and swimming. 

I had no idea when I left this morning that the day would end up meaning so much to me for so many reasons. 

It felt so amazing to be able to do an activity- an active outdoor activity- with my kids without M. I reminded myself I am strong and capable. It was another postcard worthy day with clear waters and blue skies.

I got to hang out on the beach and in the ocean for more than 5 hrs, my happy place without question while my children made new friends and had an amazing day. I relaxed, laughed and chatted with a warm welcoming group of mom's and I got to meet so many new interesting people. And this day would not have been possible in California. For many physical reasons. Early morning, standing, sitting, walking, more standing, more sitting, moving through waves, walking in sand, talking to new people for 5 hrs, going to a new place I'd never been before with the confidence that "I got this", taking care of the kids (up, down, in and out of the chair, walking, lifting, feeding, constant awareness), loading and unloading the car, driving 30 mins each way; and still not being completely destroyed when we got home 6 hrs after we left. 

A lot to happen and positives to come out of what I thought, at 8 o clock this morning, was going to be a lovely but pretty ordinary day. You just never know when you wake up each morning what the day holds, do you? And even if you do know you don't always know what those things will ultimately mean to you.

Scientific assessment

Yes, I did keep a journal of my physical symptoms. I can look back and pinpoint days I felt certain ways but I will summarize.

First we spent a week in the cold mountains with our families for Christmas and it was spectacular. So much fun, laughter and love flowing. I had a few days of weakness and fatigue and I opted out of several activities. It was easy during this week, however, to take breaks in bed as our bedroom was directly off the living area and there weren't many expectations from the week other than relaxing with family. The one day we ventured into town the cold and short walk completely did me in and by the end of lunch I was shaking and tingling- a sure sign my body has had enough and generally my "lay down or I'll make you" warning from it. 

All in all that first week was what was expected and while really cold, the dampness and temperature changes of our old town we're not present. It may have only gotten to 51 during the day but it would still be 46 at night for example. As we've determined temperature change is worse than consistent cold by far. I was actually impressed by my body's strength in this climate, not great but not as bad as expected. But the heat was on and our shower had a heated lamp- these things make a big difference in sudden temperature adjustments. 

I will not count, but will make note of, the dizziness and nausea portion of our trip as that is a direct correlation to my meds and happens in every climate and state… so let's say the drive down the windy road was unpleasant. 

The second part of our trip was also filled with laughter and love and a whole lot more activity. We stayed in our old town with a good friend. Attempting to see so many people in one visit may have been overly ambitious. 

My body held up for a late NYE but needed a day on the couch the entire next day. I was able to drive one day to visit family, who had a preheated throw on the couch, but by the end the pain, dizziness and nausea were severe. 

I pushed through a day I shouldn't have to make a promised get together only to be flattened even worse the next day unable to see a dear dear friend. The rest of the trip- three more days- was incredibly low key couch bound and unable to see another dear friend for coffee as hoped. Both of those I regret and am heartbroken about. 

So for those keeping track I got about 9 really good days out of the 17. 

As for a symptom score: one thing I hadn't even realized was that the numbness and nerve pain in my left leg has pretty much gone away in Hawaii. It came right back in California again! Back to 4 pairs of socks on my left foot. I was also back to dreading showers because of the cold and needing Gatorade more for my blood pressure. I was unable to stay outside (as I can for flag football games here), I was unable to help much at the houses we were staying at, etc etc. 

It's not an accurate representation for my scientific mind because the kids weren't in school and didn't need a schedule, my friends came to me for the most part- couch, PJs and all- and I had no real obligations and responsibilities except to things I really wanted to do. That adrenaline rush always really helps. But for an overall trip it definitely affirmed that I am better here sometimes a lot and noticeable, sometimes only in some ways or slightly. But even just 10% is better right? Hopefully that realization will help assuage the overwhelming mom guilt when it pops up...

So I can safely say we were all happy to be back in the warmth, but none more than my body.