Get checked! Sometimes mental health is from a legitimate physical health condition! ( A post on H Pylori/ Trigeminal Neuralgia and Other Conditions)

The last few posts have stated I have struggled (https://worldwecreate.blogspot.com/2024/04/the-rested-soul-im-not-enough-and-that.html?m=i1) More so than my usual chronic conditions (disclosed below) I honestly was fighting a general feeling of failure. In my lower moments, the narrative in my head kept telling me that I was weak, self-absorbed and failing everything. It was a constant daily battle for me not to compare myself to normal people (or what I think of as normal people anyway.) At times I was desperate. I wanted answers and they weren’t coming. I was in so much pain on and off. I was having panic attacks for the first time since my children were little. When I phoned in desperation to my therapist, I was put on a waiting list, but I couldn’t help but feel like they thought that I was dramatic.  In my better moments, I constantly counterbalanced with the hope that I have, the faith that I have, and the love that I have. It made my quality of life the best it could be for what I was dealing with…

There were very legitimate reasons for all of this that did not stem for my mind, but from my body.

I have been diagnosed with a condition that is also known as suicide disease. It’s a nerve condition in the face officially labelled Trigeminal Neuralgia. The episodes of pain average to about once an hour. It’s about a 10 out of 10, but it only lasts a few minutes… Sometimes it feels like half an hour, but that is just because the pain is so intense. As time goes by it seems to worsen - not get better. During afternoons at times I just get a burning sensation of cluster attacks. They are a bit more mild around a 6 out of 10 more frequently during the day. When I’m lucky I can go a few hours without this happening. What is unusual is that, with this condition I can sleep, and by the end of the day I’m so exhausted from all the pain that I go to sleep earlier than I normally do. I’ve had other conditions of pain when I can’t sleep and this is indeed a huge blessing!

I find it interesting because a high school friend of mine was diagnosed with this condition several years ago. I heard that he got the surgery for it and hasn’t had an episode since. Before he had the surgery it was a form of hell on earth. Eventually he got to the point where he couldn’t speak much through his jaw. For myself, that only happens when it’s a 10 out of 10 episode. Hearing about his condition scared me so much. I prayed against it. I had anxiety about the fact that it could be in my future (because I tend to get obscure things) but then I forgot about it until yesterday, when I read that it was also called “suicide disease.” I recalled that is what he had (that name is hard to forget.) I have been taught by life that sometimes our bigger fears are manageable, or at least, there is an aspect with support, kindness, faith, hope, and love, that we can still have a quality of life even when fears happen. 

Travis Barker, who is the drummer from Blink-182 and Kourtney Kardashian’s husband has this condition. Sometimes I see him on the Kardashians (as it is my guilty pleasure show. I’m addicted.) But he is so soft spoken and kind on that show. Probably one of my favourite characters actually even if he can be a little odd… And on that show, he lives a fairly good quality of life. Now granted, I don’t have a team of people to feed me, help keep me in shape, help watch my kids, and all the things that money can buy… So I know that I have to realistically look at that difference. However, watching him joyously play the drums, and parent his kids and love his wife, shows me that I can still do the same things. I can find meaning an inspiration in the meantime. When this condition shows up, it is standard procedure to get an MRI to rule out a diagnosis of multiple cirrhosis or a tumour pressing on the brain. I still have that yet to do and it will probably be months…the Locum Dr. stated I could even have the disease symptoms gone by the time I get the MRI (hopefully!) but to take it anyway. But I’m grateful that there was a reason for what I originally thought was an injury or an insane need for a root canal! I was given a sliver of hope that some people have the condition go away around the 3- 6 week mark ( it comes back when triggered over a lifetime but it can disappear sometimes!) I’m almost at that point and I’m honestly praying that’s my case. I can see why years of this would cause major depression. (For those who have had this longer, my friend had the surgery option that put a buffer between the Trigeminal nerve and the blood vessel.)

Sometimes we need answers to heal or at least begin a mental healing journey. And it turns out that this is one of the most painful medical conditions (as you can see in the picture.) And I’ve been living it for a few weeks. Which shows that I am not weak. That I have not been weak. In fact, I have been strong! What a shock! I have been an overcomer for the cards that I’ve been dealt. That narrative changes everything! 

I was recently at a youth conference. Each time I get choked up at seeing 1700 youth trying to live their best lives in faith and healing. 

There is a book called, “Life is hard. God is good. Let’s dance.” I haven’t read it but I ordered it. Apparently, the author is on the Autism Spectrum and grew up in a dysfunctional pastor’s home yet still believes … that sealed the deal. Moreover, the title kept reeling me in. I can’t claim that any of it will be good, but the title appealed to me because life is hard but I still wanna have moments where I dance! Youth are good at embracing this concept. I love witnessing the joy. I want to latch onto the belief that the I AM is good no matter what and I AM can redeem any circumstance. Does that mean that suffering and hardship won’t happen? Absolutely not! But it does mean there will be silver linings of beauty amongst the pain. There will be grace when it feels like there’s almost none. There will be some sort of support from the universe because God is good. Tragically though, there will also be immense suffering. 

At the same time, I was also diagnosed with H pylori and possible stomach ulcers. I could’ve had it for a long time but officially my stomach started acting up violently before Christmas. It could’ve been triggered from a bad virus. Regardless, I have it. The standard anti biotic treatment is intense and doesn’t even have a high success rate. Luckily, my understanding team of helpers and doctors are allowing me to try natural remedies first and get tested a month later and if that does not work, I have to do quadruple therapy after. My current Dr. graciously acquiesced when I asked for a test and even asked if I wanted to check with my naturopath before treatment! (I was impressed and amazed!), my former Dr. in retirement advised me along with my retired naturopath, my therapist fit me in so that we could go over a mental resiliency plan when the pain hits (medication doesn’t touch Trigeminal neuralgia unless it’s anti-seizures which have a lot of side effects. I’m unwilling to try at this point. But normal pain killers won’t touch it so there’s no point. One has to learn how to cognitively deal with it and recover after each episode.) My dentist and physiotherapist fit me in to take care of any additional issues and concerns and BOTH told me to call them at any point and they’d be there for me. A friend who is knowledgeable in all things gut and science took a lot of time to discuss diet and treatment options with me. To say I’m currently lucky with my team is an understatement! ( Maybe I do have a different form of what Travis Barker has- blessings!) A new Locum Dr. gave me incredible compassion and support. 

My experience with health professionals has not always been this way. In my twenties, 99 percent of the time I was written off as a dramatic, hysterical woman, and that it was all in my head ( when I had very real, hard chronic conditions that triggered anxiety and not the other way around.) I find it incredible, when twenty years later, only 50 percent of my experiences are that way! Empathy in healthcare has begun to change! Openness to natural treatments is no longer fully taboo! This, in itself, is a miracle to me. 

Recovery is going to be months of my life (if not years as my other conditions get triggered by this too.) The danger in it, is what it leads to, but honestly, half of the world has H Pylori. It’s a little bit more rare in Canada, but due to water contamination in Third World countries etc. it’s more prominent there. There was a point when I was visiting my Grandma that I was choking and inhaling acid all the time. It was awful. I’m happy to report symptoms are a little less now due to many natural remedies, but I also thought that I was possibly dramatic or seeking attention. But I would not want to go back to the last few months of dry heaving and gagging etc. I was having symptoms for a reason. 

We tend to give advice to people not understanding context. We hope we can help. This sharing can sometimes lead to answers that are healing… But, sometimes in religious communities, especially, there is an expectation that if you believe in God, you will be healthy all the time. Unfortunate statements can be used. Sometimes, I lightly push back, sometimes I smile and nod, sometimes I ignore. We actually weren’t promised a good, healthy life. Maybe for some people that happens and it’s a beautiful example of what a future existence will be. We need that hope. For most though, germs are real. Accidents happen. Trauma happens. It doesn’t mean that God is not here or the Mysterious Magic of the ONE whom IS isn’t good. But it also doesn’t mean that there is a lack of faith in the person suffering. In fact, certain people who have immensely suffered, can have a lot more faith than those who go through life easy peasy. That said some people who have an easy peasy life have an innocent faith that I also admire. Neither one is better or greater, but we cannot negate one for the other. 

The last thing somebody who is suffering needs is judgement. What I have to realize is that I cannot prove myself to all people. I cannot explain my conditions to all people. When I suddenly zone out in the middle of a conversation with a random stranger, they are not gonna know that I’m in 10 out of 10 pain - especially when it lasts a few seconds to minutes ( and then it takes the body twenty minutes to calm down from that type of pain.) They might just think that I’m weird or selfish or dramatic or ditzy. Insert any unflattering term. But luckily, years of differing diagnosis and years when remissions suddenly take a turn, have taught me that life is unpredictable. Life is also full of hard health things for people like me and we just have to live our best when it’s possible ! It’s true- I miss out on a lot. My greatest wound is incapability (and feeling useless.) I tend to get envious and spiral when I see capable/ get it done people. My therapist can’t even say the word incapable without me doing avoidance techniques. It’s something we are working on. So obviously I have my mental battles too. 

Someone once asked all I’ve been diagnosed with. Some conditions I asked to be taken off my health chart back when most Doctors treated me awfully or continually asked about how, who and where I was diagnosed. It was too much. But I don’t mind sharing the conditions. Some have improved. Some I ignore. Some I actively get treated for. Some are just symptoms of other things I believe. I honestly feel lucky that none of these are terminal. There are worse things. As my Locum Dr stated to me, “With your blood levels alone it will take you triple the time others take to recover from common illnesses and colds or flus.” This is true and why I must be more careful that the average Joe. I’m writing this list for those in my boat.

IBS (age 13 on)and SIBO/ Iron Deficiency Anemia ( since age 12) / Fibromyalgia ( diagnosed 2009) / Lyme disease ( diagnosed by natural healthcare Dr in 2010) / Endometriosis ( age 16 by Gynaecologist) / Adenomyosis ( few years ago confirmed by ultrasound)/ PCOS (around 2014)/ Celiac (about ten years ago)/ Asperger’s Syndrome (2007-2009 ish)/ Anxiety disorder ( I disagree - I think judging from all the above of course I had anxiety until I knew why it felt like my body hated me!)/ possible MTHFR mutation ( assumed not confirmed) / PMDD/ Thyroid issues ( naturopathic diagnosis only - blood tests show I’m borderline to allopathic medicine) / ADD (2012)/ Chronic Fatigue Syndrome ( with Fibro diagnosis)/ Bouts of mono/ Dyspraxia (2009 diagnosis), Depression ( on and off since post partum depression in 2003) … I feel like I’m forgetting some but as you can see - sometimes it feels like I’m cobbled together with conditions. And each new diagnosis give a piece to the puzzle, but not the whole thing. Honestly, the most comprehensive diagnosis I ever got was actually long-term Lyme disease because it explained basically all the other diagnosis along with my Asperger/autism diagnosis. 

I tend not to disclose most of this to most people anymore. (Expect this post to come down eventually.) Some people know different conditions that I have while others have no idea. I used to live defined by diagnosis. That was a needed stage to come to terms with many aspects of my being. I am stating this list, not for people to feel pity, but for my readers to realize I was already dealing with a lot before these last two diagnosis of Trigeminal neuralgia, and H Pylori. Yet! Most doctors when they see me don’t believe my blood work until they have it stare them in the face. I constantly get told that I bring the energy. I’m told that I am happy and seem fine. I work hard to try to normalize in most situations when possible. I'm not stating this to brag but to show there CAN be a semi good quality of life despite all this. Again, I am lucky to be able to do this, at this point, because I have found so many supports and aids to get me to a point where I do well, despite what cards I’ve been dealt. There was a time when I was in a wheelchair when we went to the mall. I also stayed in bed for a lot of my children’s childhood. There were years I spent crying for answers and drugged out without the help I needed. I know what it's like to not have support too and it took years to be at this place. It took a lot of time to cultivate my best self through this. As I’ve gotten older, there have been better treatments, better naturopathic resources, better doctors, better physiotherapists and a whole slew of coping mechanisms. I have learned to be my best self. I have leaned into my faith at varied seasons. I know when to say no and implement boundaries. I try to also say YES to life when I can. It’s taken decades for me to learn how to cope with some of these conditions. And I am not a person who generally accepts allopathic medicine as treatment so I find unconventional long-term ways of dealing with the whole. I think this is made me better in managing diseases but took a lot more time. It would take a couple books to tell my journey of pain and healing.

When I suddenly talk through my teeth or when I come across as unreliable, due to many factors, or can’t eat certain foods, or have to say no to certain things because my stomach is acting up, or I need to have a break- inevitably at some point -I will be judged. What I have to learn continually is that I do not need to justify my specific existence with anyone. Sometimes I share my story here but as this (https://worldwecreate.blogspot.com/2024/04/multiple-sided-anti-hero-infj-enneagram.html?m=1 ) post stated, I often take those posts down later for the most part. This one will probably be a casualty later ;) 

Those close to me deserve to know why they are affected a certain way, and why it is not personal to them specifically.  It’s a fine line of sharing because sometimes a stranger needs to hear our journey so they can discover theirs. I am extremely grateful that I heard about Trigeminal neuralgia before because I feel less alone remembering that one of my former close high school pals has it. And that he is living a full life right now.  

Sometimes it is unexpected when we are to share our struggles even with strangers or the random passerby…the other day, at the drugstore, I ended up sharing my natural h pylori treatment with the pharmacist aid because she was also in the same boat, but didn’t want to do conventional treatment either. She genuinely thanked me and told me I helped her a lot when she was feeling lost. That wouldn’t have happened if I hadn’t over shared when I was looking for a product. 

Of course, my anaemia is continuing to drop due to the fact that I cannot absorb (it can be a critical condition but part of me thinks - at some point we all have critical conditions right?) I was once again offered the IVs, however, I did not want to do it (I know I am lucky to have this option too) and my Locum doctor respected my decision, but he warned me about the risks I am taking. He was quite serious about my combination of health concerns and how I must feel like I’m often at deaths door these past few months… He was very validating about how I felt overall. His compassion and knowledge made me feel like less of an idiot. I was so grateful. 

This tends to be the story for me… Once I get a diagnosis, I generally start to feel better. I know that’s weird. But it’s true. Once I know what is going on inside my body and that there’s a reasonable, logical explanation for all that I’m feeling, then I start to research that issue, and try unconventional methods of dealing with it. I tend to need more support before the answers than after. It takes up less space in my brain after a while and sometimes I even forget about it till I realize, “Oh yeah ! I have that!” Or someone is speaking about all their symptoms and I’m shocked suddenly as I state, “oh me too!” It’s actually quite freeing for me to generally get a diagnosis. At first, it’s devastating if I don’t know what it means for my future, but once I’ve  worked through it, I feel more free. I like to know what is happening in my body and why. It’s much easier for me to deal with pain when I know what it is from. Some people are not like that. You must decide for yourself what makes your quality of life better. Sometimes denial is a fair stage as long as it’s not a lifetime stage. I still go through periods of denial for many conditions. Sometimes I just need to survive and pretend that I’m semi normal for a little while at least! 

I’m putting this out there because I hope it helps. I hope someone who is struggling or thinks that they are going insane with anxiety or paranoia because of bodily symptoms or unexplained pain, doesn’t just write it off as a mental illness. I hope that you get blood work and stool tests, and check with ultrasounds or MRIs for anything that might be going on. Also I hope you persist. Sometimes it takes multiple Drs. and diagnosis to get the right one. These diagnostic tools have been given to us as a great blessing. Even if you decide not to do conventional treatment, it is still worth knowing! Sometimes you are not just full of anxiety! Sometimes something legitimate is happening in your body that needs to be treated somehow. Please don’t assume it’s all in your head until after you’ve covered all the bases. If it ends up being a mental state (which I’ve also dealt with) there are aids for that too. Regardless, you are not alone. Someone, somewhere, is walking a similar path. The ONE who Gives is also there … perhaps subtly but also in every GOOD thing. 

A friend sent me this image before she even knew what I was going through. At first it didn’t click what I was looking at cognitively but my immediate emotional reaction was a gut punch of wow! I want that. Then. Wow. I have that. 

Update: welcome to the Canadian medical system - my MRI date isn’t until August of 2025!!! 

Also my family tested negative to H Pylori  and I share all my drinks and food with them so …. Yea not extremely contagious it seems …

Song choice: The Search - NF

 https://m.youtube.com/watch?v=H0BXMUdyIK