Magic

If I was told 3 magic beans would improve my quality of life I would buy them and eat them. Move over Jack.

Every time I try something new, start a new regimen or try a new medication, I am hopeful. I am an optimistic person by nature. It shines through with regards to my disability. Each and every time it gets me. "Maybe this will be the one. The one that gives me my life back." Not even a "part" of my life. But my WHOLE life.

I love this image and I wish I knew who to credit it to.

"It may turn me into a marathon runner. Leave me migraine and head pain free. Give me back 100% of my body, pain free. Turn me into a sex maniac for my husband. Give me the energy of a 20 year old." Do you think my expectations are maybe a tad bit unrealistic? NEVER!

 Me in Ireland - 2016  

When we last went to Hawaii I actually thought I could do everything we had on our agenda. No questions asked. I really believed I could snorkel in the the morning, hit a museum in the afternoon and go out to a lovely dinner at night. All with just my rollator (if I even needed THAT I scoffed.) Want to guess how that went? I think it's the most I've cried on any vacation ever. Let's leave it at that.

Aloha from the hotel bed

But that didn't stop me from hoping.

I think part of it is the strangeness of my disease and the fact that sometimes something really will make a huge improvement. Or at least it happened once. When I changed my diet to short chain fatty acid. That was the most remarkable improvement I've ever made. It did indeed feel magical. I went from using my chair every time we left the house (and needing a wheelchair van) to walking on my own everywhere without even a cane or rollator. Remarkable. 

August 2023. Right before I started the short chain fatty acid diet

My doctors didn't know what to think. It was Genetics that found out I had an issue processioning long chain fatty acids. The funny thing is most people do. It just doesn't seem to affect them as much as it does me. It also affects people with Autism, though my son would never do anything about it. He thinks whisky is a health food. And who knows? Maybe it is? 

 My biggest magic trick. Walking again. August 13, 2023

When I was craving sugar and carb while battling it out with Lamotragine (for seizures) I thought maybe I just need a lot of sugar? I think that's true when I'm ill or in a muscle crash. I don't think it's true daily. I tried out a glucose tablet and it just gave me a bad headache.

I still have that "magical thinking" whenever a new issue is discovered. "Maybe I was having seizures the whole time and now that I'm on anti-seizure medication I'll be 'fixed!" Or "Maybe it was migraines and now that I'm on Botox I'll be 'fixed!" I swear I do this constantly.

But the truth I really need to embrace (yes, after all this time) is that I'm disabled. Severely so. I have a mitochondrial disorder. It is slowly progressive and degenerative. I survived a brain tumor. Both things impact me in a huge way. There is no silver bullet or magical bean that will remove those two facts. I require certain things to thrive. 

Pottery, creating things, spending as much time as I can with friends and family (both furry and non-furry.) Rest, rest, rest. Healthy foods, my medications (14 pills in the morning, 10 in the afternoon and 11 at night.) My medical team helping me stay at my baseline or better. Love. New clothes, HAH! All of these help me to thrive.

Time with my family always helps keep my spirits high 
and the gratitude flowing. 

I have good hills and bad dips. Just like anyone. I have happy days and miserable. I have days where I have extra energy to get a lot accomplished (like today.) And days where I just have to stay in bed. I miss gaps of time every day to rest. So my time is very precious.

My life just as it is feels magical most days. I'm full of gratitude for what I DO have and try not to think about what I lost. Things aren't "worse" just "different."

 

Making an Effort

I'm realizing there's a very good reason why most disabled and chronically ill people complain of loneliness. It's because friends don't like to be the one to make plans. I'm not sure how that works if EVERYONE is like that. Actually I am sure. It doesn't. Friends fall by the wayside until they vanish completely.

My husband is my best friend.

Of course there are the rare exceptions, but those tend to be family members. It's the very rare friend who will be the one to make the effort to keep in touch and suggest plans.

My mom is my best friend

I have also come to terms with being that person with my friends. If I want to see them EVER than I have to be the one to text, call, suggest SPECIFIC plans... (that's the key, they have to be specific.) And there are a lot of people in my life whose company I enjoy enough to make that effort. And those who I don't.

The person I call my best friend is one of those people who would make an effort even if I was ill and couldn't do it myself. That's one of the reasons I say she's my "best friend." She's reliable, funny, fun to be with, smart, a feminist, doesn't hound or smother me, makes plans and asks me to join her. All qualities I admire. 

My best friend and my mom helped throw me the best birthday party ever.

She's also anxious as hell. Complicated. A contradiction. Traumatized and stubborn. Not all bad qualities. I think of it like a dessert. If it was too sweet I couldn't have much of it. People need balance. 

I also admire how important her heritage is to her. She's half Samoan and half Italian. Funnily enough her Samoan half seems more important to her. But I get it. I value my Italian heritage even if it is much less than my English or Irish genes.

I find now that I have my sisters in my life and their very large families it leaves less time to spend with my friends. But I will always make time for those who enrich my life.

Re-Imagining Me

I've been trying to have a big mental shift. It isn't easy. At my age my thinking is pretty set. However if I shifted it to become a full time student at the age of 40, then I can do this. I accomplished a hell of a lot for my career. I have shown myself what I can do when I put my mind, time and energy to something.

In the past this was how my brain worked:

90% Illness

10% Everyone else, including me

My illness was in the drivers seat. I did anything I could to self-comfort. Social media, fast food, limiting how physical I was, ignoring it and just surviving. Not much of a focus on thriving.

But the power of the mind is mighty. Here's what I'm working towards:

75% ME

my food, being in nature, art, creativity, spirituality, relationships

25% Illness (appointments, crash days, pacing, pain, insomnia)

Rather than numbing myself out of my illness I'm leaning in and making friends with it. I'm not "managing" or "surviving." I am nurturing and feeding my body what she needs to do her best. By leaning in and listening. Rest, art, movement, beauty, nature, good nutrition... These are things I need. 

My Hindsight Is 20/20

When I first started this blog six years ago I was terrified. I felt like my whole body was failing on many levels all of a sudden and I didn't know why. Feeling like I had no control over what my body was doing was very scary. 

Looking back I can see little threads of struggles all through my life.

I was a very tired kid. I had serious sleeping disorders. Nocturnal panic attacks, sleep walking and talking. I fell asleep at school frequently only to be woken up by an annoyed teacher. I always had "growing pains" in my legs where my legs would just ache for no reason. My mom even took me to the pediatrician for pain in my legs. I remember it being dismissed as "growing pains" (which are not a "thing" anymore thank God.)

My back hurt almost all the time. When I would be roller-skating with my best friend (a favorite activity of mine) I would need to take breaks and she would rub my back for me. It was one of those things you don't know is abnormal because it's all you've ever known. Looking back now I see red flag after red flag that I had some kind of health issues happening.

As I grew so did my strange health symptoms. I had endometriosis so severe that I had five laparoscopic procedures to remove abnormal tissue by knife and laser. It grew on my bowels, bladder, intestines, uterus, ovaries, pretty much everywhere it wasn't supposed to be, causing me incredible amounts of pain. Now we know so much more about it and what a serious disease it is for women. But back then the male ER doctor just smirked at me insisting I had an abortion when I wasn't even sexually active. 

My thyroid failed, then my gallbladder. I had mysterious Fatty Liver Disease and just felt tired and drained all the time. I struggled to live a normal life and work 9-5. My physical stamina was never the best.

My one child was diagnosed with Autism very young. Researchers now know that women with autoimmune diseases are much more likely to have Autistic children. 

I had many moments before any official diagnosis or my brain tumor where I just felt like "I can't do this anymore. I can't go to this (class, job, meeting, coffee...) I'm just too exhausted." I'm not sure that's actually normal.

This was all before the TB. Before the craniotomy. Before I needed any mobility device. So was this just a sneaky genetic malfunction that has always been with me? Or did my propensity to health challenges hurtle me down a spiral of worsening issues? It's interesting to look back and follow the threads. Regardless of the causes, to me it looks like one massive web.

What a Difference!

 A few days ago we had our holiday open house. The last one we did in 2021, two years ago. Here's me in 2023 (left) and 2021...

Even though I look happy in both and am smiling in both, I look a little weary and fatigued in the right one. And it's not just the natural hair. Although after seeing these picture I don't think I'll ever have anything other than black hair again.

I'm close to the same weight. My makeup is similar. But as my mom likes to say "You look about 20 years younger!" I feel about 30 years younger.

I'm savoring this Christmas season. All the bustle and time spent with family and friends. I've also been very creative this season. Doing pottery, making crafts to decorate my house, drawing on wrapped gifts. Even though we've been incredibly busy I've made time to rest too.

My husband even went with me to Yoga yesterday. He said he can see why it's so helpful for me.

What a difference two years, one year, five months, one day makes. I'm so happy to have my time back.

Social Diva

One of the things I hugely missed during the years of my illness was having a social life. I was able to have just enough, little tastes here and there, to make me wistful for my old days full of get-togethers. Mostly women friends, laughing, sharing our thoughts. I think friendships make us better. All relationships, but friendships especially. Friends broaden our ways of thinking and build our confidence.

Lately I have had a whirlwind of new and wonderful friendships. I met a woman through my husband's work who is delightful. We are very close to the same age and although we don't have a lot in common on the surface, we do underneath. I knew from the moment I met her that we are soul sisters. I enjoy her company tremendously and am grateful each time we are together that I have the energy for her friendship.

Recently we met her partner and to my great joy my husband got along swimmingly with him. This is our second couple friendship in less than a month. Where we love both people. Wow! That's incredibly rare. I feel very lucky.

Max got to come too!

This past weekend I was busy three days in a row. Something that would have been un-thinkable when I was ill. It felt rich. Like a bath in warm buttermilk, I felt enveloped and fully alive basking in the conversation and friendship of others. We are social creatures and I'm just beginning to realize how devastatingly isolating illness is.

Our California sunset. So beautiful.

 

My Body

My illness has a few different names, but they all mean the same thing. Mitochondrial Myopathy, Mitochondrial Dysfunction and Mitochondrial Disease. My neurologist explained the differences just refer to severity with "disease" being the most severe. Here's a tiny bit about what I struggle with. 

What are mitochondrial myopathies?

Mitochondrial diseases are caused by defects in mitochondria, which are energy factories found inside almost all the cells in the body. Mitochondrial diseases that cause prominent muscular problems are called mitochondrial myopathies ("myo" means muscle and "pathos "means disease), while mitochondrial diseases that causes both prominent muscular and neurological problems are called mitochondrial encephalomyopathies (encephalo refers to the brain).

A typical human cell relies on hundreds of mitochondria to meet its energy needs. The symptoms of mitochondrial disease vary, because a person can have a unique mixture of healthy and defective mitochondria, with a unique distribution in the body.  In most cases, mitochondrial disease is a multisystem disorder affecting more than one type of cell, tissue, or organ.

My challenges appear as severe fatigue, brain fog and muscle weakness in my entire body. I also struggle with cramps, spasms and constant severe pain. These are all of the reasons why I can no longer work. Yes... even a little (a question I get a lot.) "Can't you just?" NO!!!

I've had this diagnosis for five years now. In that time my muscles have become progressively weaker.

On top of my mitochondrial disease ravaging my body, I have severe head problems. "Intractable migraine" and "neuralgia" (occipital and temporal). Icepick migraines can come and visit me too. They feel just how they sound. No one flat out said as much, but I expect these are all after effects from my brain surgery in 2018. I certainly never had any of these symptoms before.

So that's my body in a nutshell. All of these issues have combined to turn me into an incredibly mindful person. I fully live in each and every moment (that I'm awake). I also actively look for the beauty and joy that is everywhere to keep me going. These coping mechanisms are incredibly effective. Well, that and a lot of drugs and medical treatments.

The down side of is I struggle to plan into the future. Not intentionally. Not in a depressed way. But like my brain is too Zen and tuned in to what I'm doing in the now. It can make even little things like what to eat or watch on TV impossible for me to decide. It's a strange feeling. Maybe my brain is simply busy coping with the war raging in my body.

One Month Later

I am exactly one month into a three month "temporary break" from work (SSI). One month ago I had my last day in my beautiful office. One month later this "break" does NOT feel temporary.

I'm slowly coming to terms that my condition (currently just called "Myopathy") is progressive and degenerative. New symptoms still crop up from time to time and none of them leave once they arrive. They may get stronger or weaker, but once here they don't just set up camp, they build a condo and invite friends.

Not very long ago I could push myself to walk around our block with my dog. If I were to do that today not only would it take every spoon I have, but I think I'd fall over. The dizziness is a bit better, but I'm still very foggy headed, especially once I get tired. And that happens all the time. 

In short, I'm unable to work.

All the moods of me.

This Sunday I have another brain MRI. And on the 22nd I have a follow up with my primary care doctor who I trust completely. At that appointment I'm going to talk with him about extending my disability leave. There's no way I can go back to work as I am.

My hope for something or someone to "fix me" is waning and I feel a pull to just do what I can every day. What I have is obviously still a mystery to all medical professionals, though they've been able to rule out quite a bit. To me it just feels like everything my body went through during the TB and brain tumor left me with something "turned on" that never should have been. Or not. Who knows? All I know is I can do less this week than I could the week before and so on and so on.

I also think I need to make some small modifications to my house while I'm still able to be so mobile. Planning ahead is never a bad thing. 

Depression and Chronic Illness - One Year Later

Last April I shared some tips on ways that I help myself with Chronic Illness and Depression. But sometimes that's just not enough. Last July I had a few weeks where I just couldn't stop crying. I was about to start a new job that wanted me to work 40 hours a week and was struggling with illnesses that then still had no name (now I know it was a brain tumor, Metabolic Myopathy and Rheumatoid Arthritis.) I talked with my doctor and he put me on Cymbalta. That helped my mild depression and my joint pain. Things were good. 

Fast forward to today and I'm feeling the fog of depression again. I'm feeling numb to things I should feel engaged in, everything feels hard like I'm running through molasses (and I'm not talking physically, but mentally and emotionally.) I feel sad and things at work that are usually easy are becoming hard. I sometimes think about being dead and how lovely it would be (but not to worry, I'm not suicidal. There's a difference.) I feel overwhelmed and exhausted mentally. 

I think these are very common feelings when one is struggling with a medical condition or chronic illness. I once asked a friend with a spinal cord injury how she keeps so positive and she said "I don't allow myself to think any other way." So Cognitive Behavioral Therapy is what works for her. For me that can only work so long or so well.

So I messaged my doctor yesterday about increasing my Cymbalta. He asked my symptoms and I shared with him and now he wants to see me today to talk in person. I'm ok with that. I'm suspecting that instead of increasing my Cymbalta he'll want to put me on something else. Any help I can get will be appreciated.

But why not try therapy first? Well, I've had a lot of therapy in the past and I'm actually really good at using my non-medical tools. But I think there comes a time when therapy just isn't enough. You need help and you need it fast. 

On the non-medical mental health front I am trying out a support group on Saturday May 18th in my area with the Muscular Dystrophy Association. It's a "Mixed Diagnosis Group." So it's for adults with all forms of MD to come and talk. Partners are also welcome so my amazing husband will be coming with me. You can never have too much help or too many tools.

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

Words Matter

Since entering the world of chronic illness I've noticed something disturbing in the language used to talk about it. Who hasn't heard "She's battling Cancer." Or "He's fighting addiction." Like we're all soldiers who signed up for some unseen war.

This goes for diseases like Rheumatoid Arthritis, Multiple Sclerosis, Lupus and many other life-long, life-changing challenges. And don't get me started on the terms we use for adaptive equipment like "wheelchair bound."

You know what? Words matter. I'm not battling myself. I'm not even fighting. Want to hear the true definition of fighting according to Websters English Dictionary?

1) Take part in a violent struggle involving the exchange of physical blows or the use of weapons.

2) Engage in a war or battle.

3) A violent confrontation or struggle.

Ummm, yeah. See the issue?

This doesn't describe my body, my life or my attitude at being as healthy as I can be. My immune system is over-eager and is mistaking my own tissue as not belonging to me. End of story. My challenges come from my own body. I don't want to be "violent" toward my body. I don't want to "struggle" with it either. I want to have kindness, love and nurture myself. That's what it needs. That's what I need! My body and myself are the same. If I fight my own body, I'm fighting myself and that's just the opposite of helpful.

And what do we say about people who die of an illness? They "lost their fight with cancer." Seriously. I've read that and heard it said many times. To me that implies some kind of defeat. If you dig even deeper it implies that they gave up or just weren't strong enough to win. And what do we say of people in remission? "They are a survivor." That's just twisted when you really stop and think about what those words actually mean.

Battle      Brave     Survivor

War         Lost       Losing

Fight       Fighting

Struggling

Words matter, so think about how words make you feel and what words you'd rather use about your very own personal disability.

But don't take my word for it. Here's an excellent article from a brilliant woman who passed away from her cancer. You can also easily replace the word "cancer" here for many other illnesses.

Gentle Reminders

I have a few favorites in my journal. Things I like to go back and refer to. These two are particularly worth sharing today:

Yes!
One of the reasons I love gardening. 

I read a while back on another chronic illness blog that you can't live your life with sickness at the middle of it. I firmly believe that is true (no matter what the challenge is.) When you just go from appointment to appointment or even symptom to symptom you aren't really LIVING your life. You're just surviving. Of course there are exceptions to this. But typically to go from reaction to reaction is more damaging than the thing you're reacting to.

When I say "don't turn into your family" to myself it's a reminder to not just stop living. That's what my grandmother has done with her chronic illnesses and she's miserable. I don't know what she's living for. She just drifts from appointment to appointment from pain pill to pain pill. It's no life that I want to have. 

I try hard to remember this and instead of going from crisis to crisis I plan. I do. I go. I create. I invent. I discover. I explore. I may have to work around or with things, but I'm not letting these challenges rule my life. 

That's what the journal entry you see above was about. A reminder of things that make me happy and that make life worth living. If you're just going from crisis to crisis, always just reacting, then life isn't really worth living. Savor. Enjoy. Play!

Patiently Being Impatient

I've become an expert at patiently being impatient. Patience is not one of my many (many) virtues. I've never been a patient person. However, when you're a patient, you HAVE to have patience. When my son was little there was a Sesame Street song that just nails it. It goes "You have to be patient, to be a patient..." Oh Maria, you wise a$$ woman you. 

So here I am. Patiently waiting to hear back from my Rheumatologist about a question I asked her. Patiently waiting for my May 1st appointment with my primary care doctor to explore anything I can do or take that might help while I PATIENTLY wait for my June 27th appointment with my new neurologist. See... that third one got me. I'm out of patience (and apparently can't spell "rheumatologist" to save my life.)

My BFF - the cup cozy for all cold things

And meanwhile back in pins, needles, numb, temperature sensitive, fire-ants-are-eating-me-alive land, I breathe and remind myself to be patient. 

I read this really wonderful quote yesterday from The Book of Joy. "If something can be done about the situation, what need is there for dejection? And if nothing can be done about it, what use is there for being dejected?" -Shantideva

I just adore that word "dejected." YES! I feel dejected! I feel it hard core! To my gut! To the PAIN (a little Princess Bride humor for you there.) And to force myself to instead feel hope, optimism, patience, is no simple task.

The Dalai Lama says that "As we recognize others' suffering and realize that we are not alone, our pain is lessened." I completely agree. I think that's one of the reasons I enjoy reading other people's blogs about chronic illnesses, autoimmune disease and other challenges similar to mine. It makes me feel not so alone. And when I see that someone has similar symptoms or struggles, it feels comforting AND validating.

Most of the time with doctors I feel like I'm trying to describe a world to someone who has no sight. It's just impossible. To share with others who can see what I see and feel how I feel is incredibly liberating. It gives me hope.

Spring is a time for renewal. 

I'm doing my best to join in on the growth!

The Dalai Lama also says that "The way we heal our own pain is actually by turning to the pain of others." I do notice that while I'm at work hearing of other people's deep pain, mine slips away. For that hour I can focus on comforting someone else rather than being the one who needs comfort. It is a very healing experience (hopefully for us both.) I feel very fortunate to do what I do.

I'm working on reaching out and sharing more of my experience with others. Making new friends and opening up more. For today I wish you good health and lots of love and patience.

Most Important Part

I'd like you to meet the most important part of my life. My husband of 23 years, my partner for 25 years, the father of my son and the person I couldn't do without. 

I think most people imagine their husband/wife/partner to be a very important part of their life (at least I hope so.) But I know that mine is even more unique.

Other than making me laugh all the time (and laughter really is great medicine), he has supported our family financially, comes with me to every medical appointment and procedure that he can, rubs my back every single night and reads me a story out loud every single night. This was once a loving night time gesture and a fun way to spend time together that didn't involve a screen. But over the past 3 years it has become much more than that to me. It's the highlight of my day every day and the main reason I get any sleep at all. What a guy! Of course he does much more than that, but for the sake of space I'll keep it more focused.

Having a companion in life is the key to good health. Isolation does horrible things to both your body and your mind and any burden is much lighter when shared. Even on my worst day I feel my pain and mood lighten when my husband comes home. 

My superhero of a husband also tends to see the good everywhere. The good in people, in intentions, in situations. He is incredibly trusting, kind and generous. I tend to be much more cautious about who I trust and vigilant with people. He brings out the best in me. 

He's a lot like another man I adore, Mr. Rogers. He's calm and patient. Two things I have to work very hard to be in any way. You'd love to have him as a neighbor. 

I have no idea where the future will take us both. But I know that I can tackle anything that comes my way with him next to me. I also know that I can count on him and that anything I share with him will be heard and taken seriously. I think that makes me very lucky!

Pleasure to meet you!

Writing is helpful. Sharing stories is even more helpful. I'm typically a "holder of other people's stories" both professionally and personally, but I feel it's very healing to get your own story out in the world.

So, it's a pleasure to meet you! I'm "Atypical Dandelion." Let me explain. If I hear another doctor use the word "atypical" to describe me or my symptoms I'm going to snap. So rather than do something rash (or potentially illegal) I'm claiming that word. YES! I'm atypical. But that doesn't have to mean anything negative. I'm unique, distinctive, un-definable and defy all the odds. I'm "atypical." 

The "dandelion" stands for health, persistence, perseverance and fragility. I'm all those things too! I'm on a quest for health. I've learned to be ridiculously persistent. But at times I can run out of spoons and be fragile. Did you know that dandelions are super good for you? It's true! The root, flower and leaf are all very high in nutrients. Why it's considered a "weed" I'll never know. I find them beautiful and symbolic. They grow and thrive in the worst of conditions (much like a lotus flower) and carry your wish on the wind. If you ask me they're magical. 

I'm on a quest to heal myself. I'd like to trust others to heal me too, but so far that isn't working out so well. After my treatment for Latent TB 3 years ago my body just decided not to be doing so well. I'm still trying to get a solid diagnosis, but the best I can tell I have something autoimmune happening, a chemical sensitivity and gluten intolerance (not Celiac Disease.) 

(Good morning breakfast!)

After my rheumatologist appointment last week I was left with the helpful information of "we may never know exactly what's going on with you and we might just have to settle for a best guess." I found that incredibly depressing to hear. Of course she also wants to chuck more drugs at me without knowing exactly what's wrong. Maybe the 7 vials of blood I gave and the MRI I'll have Thursday for my hands will reveal something. I'm ever hopeful. After crying in the bathroom at the medical center and feeling extremely angry and un-heard I decided it was up to me to try and help myself. 

Three months ago out of sheer desperation to find something to help ease the neuropathy in my arms and legs I decided to test out a gluten free diet. I read that sometimes people who have been on long, high doses of antibiotics (like I was for the Latent TB) can develop a gluten intolerance. Right away I noticed a big improvement and that bolstered my confidence.

Although I don't feel like I can really "heal myself 100%" I do feel like what I eat and what I put on my body can seriously affect my health. So I came up with what I called "Plan Ass Kick." 

Plan Ass Kick is Underway!
The pink nail polish was a required mood booster.

Ditto for the pussywillows.

Plan ass kick is a combination of foods to avoid, supplements and foods to indulge in. I'm trying to avoid sugar (a known inflammation causer) and eating a lot of fresh foods. I'm making my own juice every morning with ginger, turmeric, kale, spinach, carrots and apples. I'm getting lots of rest and trying to avoid stress. I purged my beauty products of anything with chemicals in it. I'm using crystal deodorant and "mud" toothpaste. I gave Oil of Olay the kiss off and use vitamin E oil instead. Get the picture?

Its been 6 days since I started PAK. Maybe my neuropathy is a tiny bit better, but that's all I've noticed. But that's where patience comes in. Some medications for Rheumatoid Arthritis (the closest thing my Rheumatologist says she thinks I have) can take up to 6 months to start working. 6 MONTHS!!! So I think I can give it longer than six days.

My symptoms are too long to list. But my major ones are the neuropathy, dizziness, dry mouth, sleep problems, occasional brain fog, fatigue, chronic joint pain and loss of grip strength in both hands (mostly my right though). Cutting out gluten got rid of every GI symptom I was having, reduced my swelling and improved the joint pain. It has been helpful enough to make me go out of my way to avoid gluten as much as I can.

It's really scary not knowing what's going on in my own body. It's very frustrating when the specialists don't know either. It's incredibly exhausting trying to find answers, fight depression and communicate my needs to people who love me. Spoons are hard to come by and I'm hoping this blog will be a tool to help me hold onto some of them.