Salty Zebra

      As I mentioned in a post earlier this month ( Day 4: Becoming an Ambulatory Wheelchair User (saltyzebra.blogspot.com)  I am exploring my options with mobility aids.  I am perfectly capable of getting around the house (for the most part) and I can walk to and from the car and buildings, but if my outing involves much more walking than that I struggle.  Grocery shopping, walks in the park, even events that involve a lot of walking/standing around wear me out quickly and I develop quite a bit of pain in my legs.  I believe my challenges are a combination of low energy and lax ankle joints that put a lot of burden on my calf muscles - not to mention invite injury.     We've explored the option with our insurance company and been informed that they will only pay for a chair for me to be used in the home.  If the chair is able to fold up and go in the car then they will not cover it.  They only believe it is medically necessary for me to be able to perform my basic functions of dai

      If you stick with me here for any length of time, you'll see I travel in cycles with my struggle over not having been healed yet.  At times I feel mostly at peace, accepting that I have done what I am supposed to, surrendering my life, my heart, my future to God and trusting that He will put things together perfectly in His timing.  Then there are times where I feel like there's something wrong with me because I'm still sick.  This is especially true when I am sharing my situation with another Christian.       I, like many others, have been told that it is God's will that everyone be healed and that if I haven't been, my faith is weak or there is unconfessed sin in my life.        You can't imagine how many times I've brought this to God in prayer.  Yes, of course there are things about my life that should be improved.  I am definitely not perfect.  I am a sinner saved by grace.  That said, I truly believe that God brings up to me issues that He wants

      This morning I read an article written by a fellow Zebra (person with EDS) on the benefits of social media for those with chronic illness.  She shared that it helped her to feel connected to those she cared about even when she couldn't see them physically.  Further, she said that it helped her feel like she can, "still 'travel' all over the world and 'visit' friends and family from all walks of life."     For me, social media has a significantly different effect.  I've struggled as my abilities declined watching friends and family out and about doing wonderful things together.  I felt a heavy weight on my heart and questioned if I was a good mom anymore.  I struggled with jealousy at the things that others were able to do easily that I couldn't even consider.  I found that every time I opened Facebook on my phone it brought my mood lower and lower and I eventually had to cut myself off from it entirely.     These days if I want to connect vi

      There's a little piece inside me that always wonders if I'm making a bigger deal out of all this than it really is.  Maybe I'm exaggerating - Lord knows I've been guilty of that a lot in my life! Maybe I just like the attention.  Maybe I'm living in fear, not doing things because I think it might hurt me when it really wouldn't.  Periodically this questioning hits a critical point and I have to test things out again.  It's like having a sprained ankle, or a bad bruise.  Maybe it's just me, I but I keep circling around to, "Maybe it's fine now, surely I should try again." Inevitably it's not fine yet and when I step on it or press on it, it still hurts.      I got to wondering though, maybe I could do this in a healthy way.  Actually find my limits so that I can reasonably live within them and not keep up the cycle of shame and injury.  I spoke about it with my counselor and she agreed that this might be an interesting use of my Fi

      I have thirteen (or more?) different providers and I've been onboarding two insurance reps, one that works with finding care and one that is supposed to help me with claims.  Most of my appointments are about a two-hour drive away, and driving is really hard for me.  My husband does the best he can to help out, but he has to work to pay for all of this!  In addition, I'm on about 20 different meds and supplements that I try to keep track of.  Some have to be taken away from food, some with food.  Some have to be taken away from other meds and supplements.  Some are in a days of the week container on the counter that I refill every week, others have to be in the fridge - those are the hardest to remember.  Every doctor wants to know what I'm taking now, and that changes every month, and what each of the things is for.  I can't remember!  I know my doctor told me.  I know we worked out my treatment plan together.  But I have no idea what was said, and my husband cou

      I was tempted to do a "make-up" post for the one I missed yesterday, but I'm just going to own the mistake and keep plugging along.  I think that's an important skill to have when you are dealing with chronic illness.  You are going to hit speed bumps, or like when I was learning to drive, you may even jump fully over the curb, but the key is to not get stuck there.  Giving up is easier than pushing through, but it's not nearly as rewarding.       Every day lately I wake up with less energy than I think I need to do the basic tasks of my day, things like showering, fixing and eating food, and picking up after myself.  On top of that, I have this ever-growing "To-Do" list. No, for real, it's an actual list in an app called "To-Do."  It feels like for everything I check off, I add three more.  I go to bed every night exhausted and feeling like I didn't get enough done.  What is one to do in the face of this?  All I know to do is jus

     Today I visited my Physio's office and we discussed my next steps. Based on the suggestion of the PT who did my assessment, they agreed to try a Facet block at my T5-6 and T11-12 (at different times) to see if it would affect the pain in other parts of my back, particularly my low back. This will determine whether it would be beneficial to pursue Prolotherapy on these joints.           As we talked though, the PA I was meeting with became more concerned with my ankles than my back. I can't tell you how disappointing this was to me. The pain in my back has been so bad for so long and I've been holding out hope that prolo would help it. I let the PA know how much I'd like to do the back first, before the ankles, and she said we can do that if I'd prefer. Now, of course, I'm second guessing that because of how passionate she was about how much working on the ankles would affect.      The current plan of attack is to try a Facet block on whichever back joint is

       I am an introvert blessed with a family that loves to be with me.  I love being with them too, but sometimes I feel so... smothered?  I wouldn't change it. I so enjoy that they seek me out and want to spend time with me.  I love them so much, but sometimes it is SO HARD to say, "Yes, let's hang out!"       If you're not familiar with the concept, WebMD defines it this way, " An introvert is a person who needs to recharge their social battery rather than being energized by socialization. The characteristics of introversion tend to include spending time in solitude, avoiding or rarely participating in large group activities, or preferring interactions involving one or two close friends."     So that means I need time alone to charge my social battery, and that's not something I get enough of.  You'd think someone who is stuck at home much of the time due to chronic illness would get plenty of this, but my husband works from home most of the

     Some days, like today, I wake up and feel like I have no spoons at all to start the day, but I still have a day to start. I needed to be showered, fed, and out the door by 9:30 to make it up north to my physical therapy appointment. I'm trying to honor both my husband's limited time and attempt to balance his work-life-serving schedule by driving myself. It's not impossible, it's not even that hard, but it does cost more spoons. When I got home, I fixed myself a quick frozen lunch, because I knew I had a lot left to do and couldn't waste spoons on fixing the salad I really wanted. Then I picked up my room a bit and prepped for my first virtual appointment with my new sleep specialist. He had come recommended by both my doctor and the local Facebook EDS group so I was looking forward to it. I was not disappointed. The doctor came across as knowledgeable about the effects of EDS on sleep, he didn't question my diagnosis or make me jump through hoo

Up till about a year ago, I thought everyone who was in a wheelchair was there because they couldn't walk. It was pure ignorance on my part. I just didn't know any better. Had I been in a grocery store and seen someone in a wheelchair get up and pick something up off the shelf, I would have been in shock. I also spent most of my life being taught by my mother that mobility aids should only be used by people who absolutely could not function without them, and anyone else was faking to get attention. Between these two inherent biases, accepting the idea that I might need to use a wheelchair at different times was very difficult.      About a year ago I sustained a hip injury that made it exceedingly painful and sometimes impossible to walk. I did the best I could to get by using a cane, but found out that doing so was furthering my injury and I needed to allow my hip to rest. I still got around the house okay, but if I needed to do any extended walking, for instance s

     Five years ago some friends of ours from India came to stay with us for a bit.  We had a great time hanging out in The City, going to a local farm for a harvest festival, and carving pumpkins.  Today one of them returned to stay with us for a few days.  As his arrival approached, and even more when he got here, I was faced with what a different place I am in today than I was then. The last time they came I had just finished my Yoga training and was praying about how and where to use it.  My body was in pretty good shape, my digestive system was a mess but the rest of it worked pretty well.  We walked all over two nearby cities and did tons of active things - I didn't break a sweat. I even had my husband taking some yoga photos of me for my portfolio (see above). Three of my four children were still living at home and the oldest was living in a dorm nearby going to college.       This time, all but one of my children are moved out on their own with one living a 4.5 hour drive a

A week ago, I started feeling a new type of pain in my low back, right around my SI joint. It started like a muscle cramp or spasm. It started to spread up my back, I thought, but in hindsight I wonder if it was actually trickling down from an injury in my thoracic spine. In any case, it's not getting better. I see my physiatrist on Wednesday, my primary care physician on Thursday, and my physical therapist on Friday. Hopefully between them, we can find some course of action.  In the mornings, while I'm getting ready, I listen to the scripture meditation from https://pray-as-you-go.org/. Last week, ironically, many of the scriptures were from the book of Job. If you're not familiar with the story, Job lost everything, including his health, but he is famous for saying, "The Lord gives, and the Lord takes away, blessed be the name of the Lord." I was reminded of a promise I had made to God some time ago that everything I had was his. My marriage, my home, my kids, m

      I received my third Prolotherapy treatment on August 25th, and, unbeknownst to me, I had COVID at the time.  Earlier that week I had embarked on an overly ambitious trip to Alaska to visit my daughter and on Wednesday I started feeling crummy.  I attributed it to overdo, but took a COVID test Wednesday night just in case.  It came back negative, as all the COVID tests I had ever taken have, and so I went to get my treatment Thursday morning.  It went about the same as all the others, though my doctor had a few extra medical students with him so there were more people in the room.  Over the weekend, I got worse instead of better. On Friday, my husband also came down with symptoms.  He too took a test that came back negative so we just figured it was a cold.  Saturday he ran a fever over 103 all day and on Sunday morning I suggested that we test again just in case.  This time they both came back positive.  So there I was dealing with the results of Prolotherapy on top of COVID - no

      This post is much more delayed than I had planned for a couple of reasons - it all boils down to I didn't feel up to it though.       The day after my second Prolo treatment I had an appointment with my PCP who was concerned that I was showing symptoms of Serotonin Syndrome and had me titrate off the migraine preventative I was on.  While I'm happy to report that the negative side effects I was experiencing have stopped, unfortunately I've had a migraine for all but one of the last 11 days, my pain levels have been much increased, and my fatigue is bad. I've spent the bulk of every day in bed and I haven't been able to do much at all.     How much of this is what Prolo would have looked like if I wasn't on the meds the first round and how much is a result of coming off them?  I don't know.  Maybe we'll find out next round.     So, like the first round, my worst day was the fifth day after treatment.  Unlike the first round it didn't get signifi

      I didn't plan to write a post about this, but it has become an issue for me and so I thought it might be relevant to someone else as well.        Twenty-one years ago I was pregnant with my middle son at the same time my best friend was pregnant with her daughter.  I had the privilege of being in the delivery room with her, but while I was there I witnessed her getting an epidural.  Knowing that I was going to be having a c-section with a spinal six weeks later, this posed a problem for me.  During my first labor I had a c-section after 17 hours of pitocin-induced labor and any pain relief was welcome.  This time, however, I was having a (semi) scheduled c-section and I wouldn't be in much pain prior to the spinal - AND now I knew EXACTLY what they were doing behind me!  That caused no small amount of anxiety for me as the date approached.     Similarly, prior to my first Prolotherapy treatment I was worried because I didn't know what it would be like.  This time I

      One of the main reasons I am writing this blog is to find my community.  Because of the conditions I deal with, I find it very difficult to get out and meet people and then maintain in-person relationships.  I'm an introvert at heart so being social is draining, but at the same time I have come to realize that it is critical.  It is so easy to become isolated when your health traps you in your home.  Yes, in this post-Covid world we have a bunch of options for connecting virtually like zoom and teams, but it's hard to meet people that way. Also, people around me don't get me.  I look fine, they don't understand why I can't go for a walk or go to a party or volunteer with them.  They don't understand what it would cost me if I did.  Sometimes I do because it's worth it, but I can't do those things on a regular basis.  I'd love to connect with people that get what my life is like, people I can be real with. I've hoped that by putting myself o

          Let's talk about the Spoon Theory.  It was originally developed by Christine Miserandino and discussed in an article she posted at  But You Dont Look Sick?   It's well-written and very helpful, but I am an incredibly visual person and I never REALLY got the spoon theory until I saw this video by Jessica Kellgren-Fozard.      Essentially, the Spoon Theory is a visual/tactile representation of the limited energy allotted to those with different conditions like chronic illness, disability, mental illness and more.  One spoon equates to a unit of physical/mental/emotional/social energy as all of these are in limited supply for this population.  Most healthy people begin their day with unlimited spoons, the choices and possibilities of what they could do that day are limited primarily by the hours in it, but they're up for whatever comes their way. A person with chronic illness, or one of the other conditions, however starts the day with a limited amount of spoons, a

      I know we don't know each other well yet, but I'm going to dive deep today into an issue I've struggled with for years, maybe decades: unanswered prayer.  For a long time I was afraid to even discuss it.  I didn't want to sound like I didn't have faith, and I didn't want to diminish anyone else's faith.  But one of the things I love about God and the Christian faith is that we are allowed, even encouraged, to ask the hard questions.  I know that if it's something I've struggled with, odds are there's someone else out there that has as well.       Over the years I've come to a sense of peace with a new understanding or epiphany about faith, suffering, etc. but whether it's because I forget or because my challenges intensify, I come back over and over to wondering about unanswered prayer.  Over the last 6-8 years these prayers have been about my health, but before that it was a desire for a baby, or my marriage, or things with my kids

      Over the last few years I've regularly encountered the idea of privilege, and it didn't sit well with me.  I've been told that I'm privileged because I'm white, straight, and middle-class. I'm not severely overweight, I'm a Christian and I'm married.  I struggled with being confronted by these ideas because I know that they're true - but I don't FEEL privileged.  I wake up every day in pain and I've only had two non-migraine days in the last three months.  I am dismissed by the medical community. When I take care of myself by resting or using mobility aids I am looked down on by able-bodied people.  I struggle to find compassion for myself and be able to make the choices to take care of myself because I don't feel that I deserve it. And then I am told that I am privileged.       Before today this felt like such a dis.  It felt like my struggles were being minimized and overlooked.  It felt like I was being told that I was a bad pers

  For me Salty refers to different things.  You’ve got the slang term which refers to someone who is irritated or angry.  Yep, that’s me sometimes.  If I’m being honest, which is what this space is for, there are many times when I don’t understand why I’m in the situation I am.  Why do I have to deal with chronic pain?  Why can’t I do the things that others can?  Then there’s the haters.  You know those people who look at me when I’m in a wheelchair or using a cane and think I have no business doing that because I’m young and I don’t have any visible disabilities.  Yep, they make me salty. While those things are true and a real part of my experience, more importantly I seek to be salt.  I want to add flavor to the world, enhancing those around me to make them shine.  I want to speak truth that encourages others and preserves hope.  In Matthew 5:13 we read, “You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for any