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Domestic Violence: Breaking the Cycle For Good

For Domestic Violence Awareness Month, Pamela Jessen shared her story of partner abuse. In her post entitled Domestic Violence (It Affects Us All), she included some of the more covert forms of partner abuse and provides some tips on how to begin working toward making a clean break. Many people assume the story ends there, but it’s really just the beginning of the long process required to heal from domestic violence. In today’s post, I will discuss breaking codependent cycles in your life so you can begin leading a healthy new life.

Abuse victims don’t have to remain victims. You don’t have to continue to put yourself second to the needs of others and there’s nothing selfish about it. It’s quite natural and healthy (but your abuser doesn’t want you to know this). The reality is that no one will ever care for you right if you don’t care for yourself.

Anyone can learn how to become a survivor and live in their own truth instead. You can have a healthy mind and lead healthy life with a healthy partner. It doesn’t happen magically. It takes a little work and a lot of change, as does anything worth achieving. I can tell you firsthand the work is more than worth it and pays off heavily in happiness dividends. Change can be scary, but the alternative is even scarier. From 2014 to 2017 murders by intimate partners has risen more than 19 percent in the US. Every day, we lose an average of 6 women to partner violence in the US. Don’t kid yourself into thinking you could never be one of them.

Tips from a survivor of domestic violence who overcame her codependency and found true self-satisfaction and happiness, and then found the relationship of her dreams. You do have choices; put yourself first without feeling guilty. Begin your journey today.

Ritual Abuse Creates Perpetual Victims

As a child growing up in an atmosphere of ritualized abuse and neglect, I was quick to recognize how these patterns repeated from me throughout my life and in all of my relationships. As the family scapegoat and black sheep, I was used and abused by everyone including my siblings and extended family, select teachers, friends and boyfriends. By the time I hit high school, I’d been molested and raped, bullied on a regular basis at school and landed myself in several unhealthy relationships with boys.

By the time I was 18, I was planning my first wedding, to a man who had already tossed me out of a moving pick up truck and beat me over the head with a glass coke bottle. I thought it was simply what I deserved because I’d never known anything else. What I was suffering from is known as distorted thinking, and it’s something that happens to all victims of abuse.

By this point, I even knew about codependency; I’d been going to CODA (codependents anonymous) for teens, a group organized by a couple of the counselors at my school, as well as individual counseling. But I didn’t yet understand or believe that I had the power to change these cycles; I was simply desperate to be loved and that desperation lead me to take many risks and accept the good treatment I could get, even though I knew it wouldn’t last. I thought I could work on these problems and still seek that love and magically everything would somehow be okay. It wasn’t.

After less than a year under his heel, I knew that I would die by his hand or maybe even my own. I got the courage to escape one night during a fight that began to escalate. I returned the very next day with my mother and brother in tow. On my way out, I dumped all of his guns in the dumpster. Maybe not the safest thing to do, but the last thing I wanted was to be stalked by someone fully locked and loaded.

Even after leaving, I didn’t take my own codependent issues seriously. I knew I had them, but I felt that if I simply became hard, I wouldn’t fall into the codependent trap anymore. I became very particular about who I’d date, but I swung too far in the wrong direction, letting the chip on my shoulder take the lead, thinking that if I proved myself tough enough, no one would dare ever try to abuse or use me ever again. In my ignorance, I hurt some very nice people, because I assumed all men were the same and deserved my wrath for all I’d experienced.

From Domestic Violence: Breaking the Cycle, a must read for all victims of partner abuse.

The truth I eventually had to swallow was that unless I put in the hard work of healing my own codependency and non-existent self-esteem and learned how to love and respect myself, I only had two choices: I would be miserable and alone or miserable and abused. I didn’t like those answers, so I got to work. Here is a list of the things I had to do to get healthy and finally find a relationship that I can maintain without falling into the classic patterns I kept falling back into.

  1. I had to process through my trauma, all of it, in a safe and supportive environment. For me, that was therapy.
  2. I had to accept that the trauma I experienced left me with a lot of protective mechanisms that only worked in dysfunctional relationships.
  3. I had to have a genuine desire to examine and change those protective mechanisms before I could attempt a healthy, successful relationship with someone.
  4. I had to accept that while I wasn’t responsible for creating these protective mechanisms and unhealthy habits, it was my responsibility to work toward changing them. A bonus; taking responsibility actually feels pretty good.
  5. I had to remove from my life and influence all those people with whom I was still conducting unhealthy relationships. In my case, this was my entire family and even some friends and it was a must to avoid being triggered by old traumas and falling back into old habits.
  6. I had to learn about what healthy relationships were in order to begin to try to emulate one with someone.
  7. I had to accept responsibility for the abused little girl who lived inside me that I’d been trying so hard to run from. I was still her, no matter how much I began to change and I couldn’t just leave her behind. She needed my unconditional love and acceptance, my nurturing and my respect so I could become a whole person and accept all the parts of myself. To feel safe, she needed to know I would never, ever allow anyone to abuse her again, that she had my respect, loyalty and love. All things I had been denied throughout my life.
  8. I had to stop seeing myself through the eyes of my abusers to see who I really was, by changing the distorted thinking I developed and examining it under an objective lens.
  9. I had to accept that I deserved good things in my life in order to attract them.
  10. More than anything, I had to forgive myself for the things I’d done wrong and would continue to do wrong as I tried to live a new kind of life.

My Blueprint for Overcoming Codependency

Everyone needs to follow their own path to defeat codependency, but these are the things that worked best for me after much trial and error. Perhaps they can help you to build your own roadmap to success:

  1. Commit to rejecting any and all new relationships for at least 1 year. When the year is up evaluate your progress and consider whether you need to continue for another year. Do whatever you need to stick with this.
  2. Find a counselor who specializes in codependency. You need a counselor you feel comfortable and safe with, but who will also push back and offer strong guidance. You aren’t looking for a mother or a yes man and definitely not someone you can manipulate. You’re looking for someone who’s going to tell you when you’re wrong and call you out on your shit, and then they need to be able to offer good exercises to offer to help change it. It is very important to process through all of your experiences, but it’s never enough. You must begin working toward change, as well.
  3. Get to know and nurture your inner child. Love them unconditionally by accepting and forgiving him or her for all their faults. Place the blame where it belongs; on the people who hurt you and failed to protect you. Give the shame back to those with whom it truly belongs and forgive yourself for ever carrying it.
  4. Utilize cognitive behavioral therapy exercises to train yourself on how to identify and change codependent behaviors and distorted thinking.
  5. Work with your counselor to remove those people from your life with which you still have codependent relationships. You’ll begin to identify and recognize these relationships as you work with your therapist. If you absolutely cannot terminate a codependent relationship due to extenuating circumstances, work with your counselor to develop strategies to resist falling into the same old habits with them and how best to set boundaries.
  6. Practice building healthy new boundaries with coworkers, friends and new people in your life.
  7. Do the work. Put in the time with workbooks and exercises and try to figure things out on your own as much as possible. You won’t have that counselor forever and relying on them too heavily can be a form of codependency itself. You want to become your own person and that means accepting responsibility for your choices and their outcome.
  8. Accept that it’s an ongoing process that you have to continue to work at with the people in your life. You will never “graduate” and no matter how well your life is going. It’s imperative to check in with yourself every now and then and evaluate whether you’ve fallen into any old, unhealthy patterns.
  9. Be vigilant of how life changes can lead to setbacks. For me, becoming disabled by my chronic illness caused me to digress because it was such a big hit to my self-esteem. I was naïve about how that would prey on past and reassert old bad tapes and distorted thinking.
  10. Even when you’ve achieved a healthy relationship, that doesn’t mean you won’t experience new challenges to your mental health or that of the relationship. Be honest with your partner about everything you’ve experienced and respect when they feel like you might be practicing some self-sabotaging behaviors. If you feel it’s a relationship issue, enter into counseling together. It’s up to you both to maintain a healthy relationship.
  11. If you find yourself in an unhealthy relationship, get help right away. We all experience setbacks. It’s when we choose to ignore them that they become a problem. Remember it takes two to tango and if your partner isn’t willing to accept their part of the responsibility, you probably won’t be able to achieve the relationship you want with them. Remember, your ultimate responsibility is how you behave and what you allow in your life. No one has to stay in an unhealthy relationship. Ultimately, it is a choice and your responsibility. Get the help you need to get out.
From Domestic Violence: Breaking the Cycle for Good, a must read for victims of partner violence.

Overcoming Objections

It never fails that we humans resist change and the easiest way for us to do that is to come up with reasonable objections as to why we can’t do something. The truth is we’re really just afraid of change and will resist with everything in us if we let ourselves.

#1: I can’t afford Therapy

This is probably the number one complaint I hear, but the fact of the matter is there are free counseling services available just about everywhere. Check with DV/SA (Domestic Violence/Sexual Assault) organizations. If they don’t have a free of charge or sliding scale counseling program in house, odds are they know of a few in the area. If you don’t have a local organization, call the national hotline for your area. They will have options for you.

#2: I didn’t grow up abused, so I won’t have any problem creating a healthy relationship

Even if you come from the world’s most loving home, experiencing violence at any point in our lives impacts how we think and feel long term. Every person who has experienced relationship violence needs counseling. Sometimes we even find that our seemingly bland and benign childhood was actually filled with covert forms of abuse and that our parents still managed to transfer all their shame onto us. It never hurts to give therapy a try, even if you think you don’t need it.

#3: I don’t need counseling. I need someone to love me

We all need love, and in truth is does help, but we can’t really be receptive and accepting that someone truly loves us until we’ve learned to love ourselves. After all, if you can’t truly love and accept yourself, how can you trust that someone else possibly could? Incidentally, I learned that self-love is by far the most rewarding kind. My relationship with my husband means a great deal to me, but it comes second. I know I can survive without him because I know who I am and that I’m perfectly able to take care of myself, even with all my health limitations.

#4 People don’t really change. I am who I will always be.

If you think that way, you’re probably right. You will always be the same and your life will continue to be mired in the same problems. Change takes hard work and responsibility. It can be scary. But you can change and you can achieve happiness. The only thing holding you back is the courage to try. I’m certainly very glad I tried and I can’t imagine my life without having done so. I anticipate it would be a life filled with regret. The only thing I regret now is that I didn’t do the work sooner.

#5 I can change him/her

As I stated in #4, change is possible. However, it’s only possible if you want to change and fully embrace it. You can’t change someone else, no matter how hard you try. Concentrate on you. You are the only person you are truly responsible for, unless you have minor age children. If you have minor age children, then you owe it to them and yourself to get free and break those patterns. Dysfunction breeds dysfunction and no matter how young they are or how well they pretend they aren’t affected and don’t notice, THEY DO.

Life can be terrible, long and hard living with abuse. Break the cycle. For yourself and the generations that come after. You don’t have to be a victim anymore!

Additional Reading on Codependency:

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MCAD: Medications and Treatments

Mast Cell Activation Disorders can be quite complex to treat. Able to attack any system in the body, there’s a wide range of symptoms one must account for when treating these disorders. In my previous posts, we discussed how eating a low histamine diet can help you avoid flares, along with other ways to avoid triggers and prevent flares. The final components to achieving the best health possible with MCAS are therapeutic and rescue medications. Given the complexity of the disease, the list of medications used to treat the disease is not a short one.

I will be covering a wide range of drugs, available by prescription and OTC. Try as one might, a MCAD usually requires the assistance of a physician to treat, given the complexity of these disorders and the need for specific medications at doses that are usually not available without a prescription (and shouldn’t be taken at higher doses without a physician’s supervision). Dr. Afrin and his peers state in a 2016 article for the NIH that “Recent mutational studies revealed that each patient has an individual pattern of genetic and epigenetic alterations which may affect the intracellular signal transduction pathways and receptive sites involved in sensory perception. As a consequence, mediator formation and release as well as inhibition of apoptosis and/or increase in proliferation are determined by individual genetic and epigenetic conditions and represent potential targets for therapy. Hence, there is need of highly personalized therapy for the disease.”

Self-Injectable Epinephrine

Two doses should be carried by all patients with a mast cell disorder at all times, even if previous anaphylaxis has not occurred (though frankly my immunologist disagrees with this statement, so don’t be surprised if yours does, too). Both the patient and family members/caregivers should be trained on administering epinephrine!

To see a video on how to inject the EpiPen®, click here.

Antihistamines

There are a wide variety of antihistamines available. Unsurprisingly, many people with MCAD find that there are one or two in which they react, so it’s good to have options! Sometimes what you’re reacting to are the additives, such as dyes or preservatives. Try additive-free options to see if the problem clears up. These options can be a little more expensive, but worth a few more pennies if you find one histamine works better for you over another without the fillers.

H1 antihistamines: Benadryl (diphenhydramine), Atarax (hydroxyzine), Tavist (Clemastine), Allergra* (Fexofenadine), Claritin* (Loratidine), Xyzal* (levocetirizine), Zaditor (Ketotifen) and Zyrtec* (cetirizine). In technical terms, H1’s block mutual activation of mast cells via H1-histamine receptors. They antagonize H1-histamine receptor-mediated symptoms (Afrin, et al.). In laymen’s terms, they help alleviate allergic symptoms such as itching, abdominal pain, flushing, headaches and brain fog. Unfortunately, long term use of antihistamines is also associated with cognitive impairment (TMS), something people with MCAD already struggle with, so the use of an antioxidant to help counteract these problems is really helpful.

While generation 2 antihistamines (denoted by an asterisk*) are less likely to cause drowsiness and usually are longer acting, first generation antihistamines are faster acting and better in emergency situations. However, the preference is to treat MCAD with second and third generation antihistamines (Afrin, et al.) and use first generation antihistamines as rescue, or “as-needed” medications when second and third generation antihistamines aren’t enough.

For some patients facing serious and constant anaphylactoid reactions and dysautonomic states, sometimes continuous diphenhydramine infusion is used. “In a small series of ten MCAS patients suffering almost continuous anaphylactoid/dysautonomic flares, continuous diphenhydramine infusion at 10–14.5 mg/h appeared effective in most patients at dramatically reducing flare rates and appeared safely sustainable at stable dosing for at least 21 months (Afrin 2015). Stabilization has enabled successful trials of other helpful medications, but no patient has yet successfully stopped continuous diphenhydramine infusion. (Afrin, et al.)”

Ketotifen also has mast cell stabilizing properties. Mast cell stabilizers prevent the release of mediators. The oral formulation is not available in the US, and has to be obtained from overseas or compounded, if possible. Dosing is usually started at 1mg twice daily and increased in increments of 1mg twice daily until desired effects are noted and balanced with an acceptable side effect profile. As described by Afrin, single dosing is usually 6mg or less, and can be taken up to four times a day, according to Mast Attack. Ketotifen eye drops are available in the U.S. and can help with ocular symptoms such as dry, itchy, watery, swollen, irritated eyes. My eyes were so degraded by histamine; they would no longer focus properly, getting stuck frequently on one focal point and causing blurred vision. So long as I remember to apply my ketotifen drops twice a day, they operate normally and I can even wear contacts again.

H2 antihistamines: Work much the same way as H1’s and are used to treat gastrointestinal symptoms such as reflux, stomach pain, diarrhea, itching, flushing, headaches and brain fog. They include Zantac (Ranitidine), Axid (Nizatidine), Pepsid (Fomotidine), and Tagament (Cimetidine), (TMS).

If H2 antihistamines aren’t enough to combat GERD (heart burn that occurs 2 or more times per week), a proton-pump inhibitor like Nexium can be added, though I’d use caution with this if you have a stomach condition that causes low motility such as gastroparesis. Proton-pump inhibitors can slow motility further, as can anti-histamines, which usually aren’t a negotiable medication for masties. Instead, try addressing the problem with diet, which will be covered in part 3 of this series, or other natural remedies which aren’t harmful to motility, covered in Natural Treatments for Gastroparesis Part Two.

Stinging Nettle Tea: Despite the reputation of its scratchy leaves, stinging nettle has surprising antihistamine properties and makes a nice, mild tea. Drunk daily, it helps to mediate allergic respiratory and gastric symptoms and can even alleviate the symptoms interstitial cystitis, a common condition for masties.

Mast Cell Stabilizers

Mast cell stabilizers help to regulate the release of chemicals from mast cells, reducing symptoms overall. Unlike antihistamines, stabilizers take time to work, often needing weeks or even months before seeing significant improvement of symptoms. The first significant improvements I noted when taking the naturally occurring mast cell stabilizer quercetin was in my energy levels and brain fog. It took time before seeing other symptoms begin to change (see my full account here). My understanding is that this is common with all mast cell stabilizers. It can take 4 months or more before knowing how well they may help.

Cromolyn: The most well known mast cell stabilizer is noted to block mast cell receptor 35, which is increased when IgE is present. Cromolyn has extremely poor absorption, with 98% of oral doses being excreted unchanged. When inhaled, absorption increases to around 5%. Oral dosing is from 100-200mg 2-4 times daily. When nebulized, dosing is usually 20mg 2-4 times daily. Of note, patients usually experience a resurgence of symptoms when first starting the medication that may last 3-4 days (MA).

Quercetin: A natural bioflavinoid, quercetin can effectively inhibit secretion of histamine, leukotrienes and prostaglandins and is actually more effective than cromolyn (the only prescribed mast cell stabilizer) in inhibiting IL-8 and TNF release from LAD2 mast cells stimulated by SP. Moreover, Quercetin reduces IL-6 release from hCBMCs in a dose-dependent manner. Quercetin inhibits cytosolic calcium level increase and NF-kappa B activation. Interestingly, Quercetin is effective prophylactically, while cromolyn must be added together with the trigger or it rapidly loses its effect. In two pilot, open-label, clinical trials, Quercetin significantly decreased contact dermatitis and photosensitivity, skin conditions that do not respond to conventional treatment (Quercetin and MCADs). It also proved very effective in treating my symptoms of interstitial cystitis, firming up my skin and lessening the frequency of my subluxations.

Vitamin C: This vitamin works in two ways to help MCAD patients. It causes increased degradation of histamine while also decreasing histamine formation by inhibition of histidine decarboxylase (Afrin, et al.).

Pentosan: This medication is commonly used in interstitial cystitis, a mast cell disorder that affects the genitourinary tract. Though Pentosan seems to be most effective in the GU tract, some patients report decrease in other symptoms while on this medication (MA).

Leukotriene inhibitors: help with respiratory symptoms and overall mast cell stability. Singulair (Montelukast) is the most common Leutotriene (MA).

Third and Fourth Line Medications

Third and Fourth Line Medications come with a variety of risks to patients and are so named because they are only utilized when outcomes are poor when utilizing first and second line medications traditionally used to treat a condition.

Aspirin therapy (under direct supervision of a physician): A useful tool if prostaglandins are elevated. Helps with flushing, brain fog and bone pain, if aspirin is tolerated. In MCAS patients for whom aspirin is inappropriate (such as those with low platelets or decreased kidney function), COX2 inhibitors like Celebrex are sometimes used (MA).

Acute and chronic immunosuppressive therapies: Are considered second and third line medications sometimes used when autoimmune symptoms are present or no other medications have been effective. These therapies include Glucocorticoids, azathioprine, methotrexate, ciclosporine, hydroxyurea, and tamoxifen. The effectiveness of these therapies can be moderate to having no effect at all (Afrin, et al.).

Omaluzimab (Xolair): An anti-IgE monoclonal antibody, it is not entirely clear why this medication works for some and requires more study. It has an acceptable risk-benefit profile and should be used for 3-4 months before determining effectiveness (Afrin, et al.).

Tyrosine Kinase Inhibitors: Traditionally chemotherapy drugs, imatinib and dasatinib have been used as a last resort in MCAS patients. Patients on these medications require careful monitoring for pulmonary and renal issues. All chemo patients are at increased risk of infection (MA).

Pain Relievers

I recently received this information from a researcher on twitter and wanted to include it here. Normally, I’d include the information and not the full graphic, but I’ve decided that all the information on here is really quite useful. I do want to point out a couple of things. First, not under the cannabinoid receptor agonists that it isn’t just CBD that’s essential to treating mast cell activation, but several components found in the marijuana plant. I point this out, because a lot of people use CBD oil and miss all the other great benefits of marijuana. You may be doing yourself a major disservice if you’re using a CBD oil versus an MMJ oil or smoking or vaping the whole bud and you have an MCAD.

I also find it extremely interesting that the reason that tricyclic antidepressants work is because they reduce mast cell activity. They’re used heavily in ME/CFS and fibromyalgia, which are not considered to be MCAD, but should they?

There are many more drugs which can be taken to treat specific symptoms and of course many for comorbid conditions, but these are the most important drugs to know about when attempting to address the overall symptoms and mechanisms behind these disorders. Treat the problem of misbehaving mast cells and you will need to treat fewer symptoms overall. The most important medications in the arsenal against misbehaving mast cells are mast cell mediators and H1 and H2 antihistamines. Other medications are symptom specific and should be used when appropriate to achieve the best results. Be sure to work with a qualified specialist to help you decide which are best for you and at what dose.

MCAD Meds and Treatments

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Capricious’ Big Gay Day Out

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This is me and Mr. Lestrange (if I’m Capricious, let’s call him Steadfast Lestrange), showing off our rainbow colors at Cincinnati Pride yesterday. Yes, that’s me, without a mask, outdoors in June! How did I get away with that? Why, with careful planning, some success and a little failure, of course.

Sexuality and Gender as a Spectrum

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First, I don’t know that I’ve mentioned before that I’m pansexual or if I have it’s been as a footnote so I’d like to take a moment to talk about it. In case you aren’t familiar with it, pansexuals are attracted to spirit over body. Pansexuals can be attracted to cisgender people, trans people and everything in between, which is what sets us apart from bisexuals. It doesn’t make us better, just different. When I first came out, I don’t even think the term existed, but I adopted it as soon as it did. It was like finally finding skin that fit just right.

I’m by no means ashamed or anything. It’s quite the opposite, as I’m always more than happy to let my freak flag fly (and yes, unlike Nola Darling, freak is a term with which I’m happy to label myself, but you aren’t allowed to direct it toward me if you’re going to hurl it like an insult, much like the word dyke). I came out of the closet so long ago that I sometimes forget just how important queer activism still is. I’ve also felt ostracized by the queer (primarily lesbian) community for falling in love with a cisgender pansexual man and participating in what appears to be a heteronormative relationship to the casual outside observer. Naturally, I found myself distanced from the community for that reason. There’s a long, tired history of people at either end of Kinsey’s scale for sexual attraction/orientation judging those of us whose attractions fall somewhere in the middle and largely unless we’re with same sex and/or gender queer/trans people, historically we’ve gotten shunned by the L and G in the alphabet soup of sexuality. While trans people have also had a terribly difficult time of gaining acceptance on both sides, I feel like they’ve made more headway in recent years and somehow it’s those of us who straddle the entire spectrum that will be fighting on the last frontiers of acceptance, but I’ll spare you on the college lecture of why that is. I have a degree in Women, gender and sexuality studies. I could go on forever.

When you have the zebra trifecta and have largely been ostracized by the community for which you’d be doing activism, you don’t really feel inclined to use up your precious spoons to go and march for a place at the table in it. Therefore, it’s been 14 years since I’ve been to a pride event. I’m happy to report that 14 years has brought about some change and much more inclusion for everyone on the spectrum and I have to think millenials have everything to do with that, so bless you millenials and bless you to the Xers who mostly raised them. We felt included and have the merch to prove it, lol.

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Candles not included (LOL). The trans flag is for my niephew who recently came out. at 10. I’m so proud of his bravery!

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Since we’re on the subject, I painted this for my niephew Tom when he came out. I wanted to give him something that reminds him he always has an ally in the family. He is the only family member still in my life.

Preparing to go to Pride

When we began talking about going to Pride, I started watching the weather and the pollen reports. I didn’t want to go if I had to wear a mask and it was too hot outside. We caught a big break, where it rained in the morning, bringing pollen counts way down and providing much cooler temps (high of 77f). We immediately ruled out marching in the parade, as despite the fact that I’m now doing 90 minute workouts and have much more energy, POTS can still make staying on my feet for long periods a little tricky. Standing around and waiting is the worst and you’d be surprised how much you end up doing that at a “march.”

So with that in mind, we opted to go later in the day to enjoy the festival activities. I wore loose, comfortable clothing that covered most of me and my compression socks. Attire is very important when you’re a Masto-Zebra-POTSie. I need to keep most of my skin covered because I am intolerant to UV light. I need to try to stay cool because I have heat intolerance and loose clothing helps a bit, and I need to keep my blood volume up, so the compression socks help. I also wore well-fitting, supportive athletic shoes, which of course are always a must for every zebra. Like most, I have very flexible feet, both of my arches are collapsing, I have morton’s toes, weak ankles that sometimes collapse and there are dozens of tiny bones in your feet that are all too happy to sublux at any given moment.

I made sure my pill case was filled not only with my regular daily meds, but also rescue meds, CBD oil and advil, all of which I ended up relying on heavily. I also took my mask, sunglasses, oral rehydration salts I could add to water if I needed, eye drops and nasal spray. Boy was I glad to have them all.

When I woke up that morning, I was already reacting to something. I ran out of herb, which I usually vape, so my husband picked me up some hemp derived CBD oil on the fly to try to help get me through. Since I started taking it the night before, we suspect it had something in it that was making me react. Maybe I can’t tolerate hemp oil, who knows. I woke up with dermatagraphia and some flushing. I also found the CBD oil, while effective for pain relief, did little to nothing to help me sleep, so I got a whopping 4.5 hours of sleep the night before, too. The morning was bad for the tummy, too. Right after breakfast, I had to run for the bathroom and then again every 15 minutes or so. It was as if I’d drunk prep for a colonoscopy. This created a bit of anxiety about the odds of me lasting very long.

I took more CBD oil in the morning (I didn’t realize it was probably the oil until later in the day) so by the time we got downtown, I was a pretty good ball of itch and had to get around 75 mg of benedryl in me before I really got things calmed down.

Attending the Festival

As I’ve mentioned before, we live in the northern most part of Kentucky which borders the Ohio River with Cincinnati just on the other side. As the crow flies, downtown is 11 miles from our house, but they seem like two different worlds. We knew parking would be a nightmare right around the event with both Pride and a Reds game and every other regular Saturday activity competing and pricing was as high as $60 to park. We opted to do what smart Kentuckians do and parked on the Kentucky side in Newport for $5, then took the Purple People Bridge across to Cincinnati, which is a half mile walk.

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Behind these two rainbow warriors is the Purple People Bridge, which is starting to look a bit more gray than purple these days! And check out that shirt. Awesome isn’t it?

My first problematic encounter came in the parking garage at the Levee. There was a woman at the elevators who had absolutely bathed in her perfume and I literally ran away from her so I could strap my mask on my face before I went back. Crossing over the bridge was more of the same and I was quickly reminded how much queer boys love their cologne. We had to stop at the beginning of our bridge trek because of tachycardia, but once I got my heart back to normal, it behaved pretty well the remainder of the way.

By the time my Benadryl fully kicked in, I was actually doing pretty well. The pride festival is held in a large riverside park called Sawyer Point Park and Yeatman’s Cove. It probably spans around 2 miles in length. We walked it twice, browsing booths, eating and shopping. So long as I stuck to a reasonable pace, my heart stayed within regular limits. I only needed to sit down 3 or 4 times in the 5 hours (holy shit! 5 hours!!!) we were there.

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The Festival west of the Purple People Bridge as things are winding down. It ran the entire length of the Serpentine Wall in this direction.

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A small portion of the festival on the east side of the Bridge, which continues beyond the trees in the background.

I ate things I’m not supposed to eat. We split a pretzel, which of course has yeast, but at least I skipped the cheese and/or mustard to go with it. We had gyros with both tomato and tzatziki and we bought a funnel cake, but we were both so worried about what we were doing to ourselves that we just picked at it a little and threw it away.

Around 3.5 hours in, my Morton’s toe on my left foot started screaming. I don’t know if something subluxed or it was just cramping or what, but I developed a pretty good limp and was grateful to finally find a curb where I could stretch it out.

By the time we decided to leave, we were both pretty exhausted, but I was determined to walk the bridge back instead of ordering an Uber. Again, I was hit with tachycardia at the beginning of the bridge, this time because of the incline, and we chose to sit at some conveniently located benches. We made it the rest of the way without too many problems.

The Gift that Keeps on Giving

As is true of most zebras, what we get away with first will usually come back to haunt us later. I wasn’t at all surprised how my body turned on me last night, despite keeping up all the meds. I was sitting there watching TV and got hit with a sudden wave of nausea. I went running for the bathroom and realized I could barely walk, so severe had the pain in my foot grown. My neck turned beet red when my husband showed no signs whatsoever of having been out all day. Mental note, next time wear a sun hat, even if it looks stupid.

Apparently, I spent so much time scratching in my sleep that my nails were worn down and reshaped when I woke up this morning! Some other lovely morning side effects included eyes that were a little itchy and hands and feet that look like sausages along with some bone pain, joint pain, dizziness, and a little dermatographia. All told, I’m really in pretty decent shape. I mean, really I would have loved to wake up in this good of shape anytime over the previous ten years.

Breaking It All Down

This level of success can only mean the quercetin complex and other meds I’m taking are doing a bang up job of healing my body and I’m finally learning how to proactively plan and control my MCAS (a post is in the works on these supplements). Compare it to last year’s attempt to enjoy a festival in this blog post, When Oompa Loompa Sat on a Hill (it’s amazing to consider how naive I was at the time. I didn’t even realize most of those symptoms had anything to do with MCAS). Had I attempted any such thing even two months ago, I’d have lasted a third of the time and I’d still be lying in bed right now with terrible head pain and running to the bathroom every 30 minutes debating which end to present to the toilet first. My pain levels would be completely out of control, I probably would have woken with something out of joint, my eyes glued shut and would have had to deal with an anaphylactic reaction at some point during the night. This, frankly is a real treat.

Would I want to treat my body like this every day? Absolutely not, but it’s nice to know that I don’t have to be a prisoner in my own home 365 days a year and can get away with the occasional special day out without restriction. I know within a few days, I’ll be fully recovered from this rather than weeks. That means it won’t cost me a week or two of strengthening and exercise, setting me back months. Hopefully it won’t be paying too long term of a price with my tummy. I regret nothing at this point.

We all have to find our balance and decide for ourselves what’s acceptable and what we’re willing to risk for some temporary freedom; a day to do what we really want. What price is too high to pay for a little freedom? At this level, the trade off is quite worth it to me, while for some it may not be. Inside or outside of the community, it’s not our place to judge what’s right for each other, just like in the LGBTQIPG community. It’s our job to support each other and be good to one another, at least if you want to have friends and have those things yourself. As humans, we are critical by nature, we make comparisons automatically, a trait which helps to keep us safe. Acting on those critiques, speaking rudely against other’s decisions, those are things we can resist. Opting instead to be sympathetic and supportive when we screw up and bite off more than we can chew and cheering us on when we succeed; those are choices we can all easily make.

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Dietary Changes to Improve Every Spoonie’s Health, Pt. 2

Or yourself!

When I wrote part 1 of this article and spoke about the known effects of glyphosate (aka roundup) in the body and the possible effects, I couldn’t find any studies to back up my suspicions that glyphosate and other herbicides and pesticides like it are contributing to the major uptick in autoimmune, connective tissue and neurodegenerative diseases in our world. Well, I just found it. This review of studies completed as far back as 2013 found a huge body of evidence that links the use of these chemicals to the growing rates of chronic disease. Check out the abstract below:

Where did I find this study? Among hundreds listed by gmofreeusa.org. Enter at your own risk, for you will likely be spending hours reading horror after horror of the effects on glyphosate and other herbicides and pesticides on many a living creature, appalled that you’ve ever been tricked into injesting the carcinogenic, neurodegenerative, mRNA decaying, infertility and birth defect causing stuff. There is literally not a system it doesn’t effect, including our precious microbiomes and DNA. But seriously, at least read through some of the study names. The list is an amazing indictment of the stuff.

I don’t care how little your SSDI check is, no one can afford the vost to their health to eat this stuff. If you aren’t carefully screening everything you purchase and put in your mouth, you are ingesting it, right down to your tap water. Not sure what’s in your tap water? Check EWG’s tap water database to find out. Then get the appropriate water filtration system to protect your health. I’d even question your bottled water as much if it’s purported to be unfiltered tap water purchsed from major municipal water sources like my own which happens to have umsafe levels of lead, hexavalent chromium, nitrates, trihalomethanes, and 1,4-dioxane, just to name a few. I’m not a fan of bottled water in the first place for all the waste, no matter what kind of container it comes in.

At the grocery, be sure to check labels and watch the news for companies who have been caught scamming the public by getting certified as organic and GMO-free who aren’t keeping up with those promises, primarily those resold under your grocer’s labels. The absolute worst offenders are wheat, corn and soy, but glyphosate is used on almost everything in conventional farming and conventional animal products too come with a heaping helping of glyphosate due to their feed.

To avoid it, buy certified organic produce and grass fed organic and heritage raised meats and make your own foods from whole ingredients whenever possible. Avoid eating at restaurants that don’t practice the same things that you do at home.

Eliminating these things from my diet helped me somewhat to feel better and reduce some of the neurological effects of these toxins, but I saw my biggest strides by detoxing and repairing tge damage. I did this by taking curcumin and glutathione for a year to cleanse the toxins and help heal the mitochondrial damage. I also believe taking acytl-l-carnitine helps some in this department, by slowing the decay of mRNA and allowing it fuel to aid in repair. I still continue to take the acytl-l-carnitine as I always see an uptick in my symptoms when I attempt to quit, so it does something more (perhaps helps keep the constant damage of untreated chiari or CCI at bay?), but I’m not chemist enough to understand exactly why it helps keep my nerve pain and migraines at bay. I just know it does.

Anyway, I covered most of this stuff in my first article here, but I wanted to present my new findings and emphasize the importance of getting this stuff out of your diet. I feel very strongly that diet contributes so much to the quality of life one can expect to have with an autoimmune illness and it should be everyone’s first line of defense. Once you begin eating right and repairing the damage, you might find just like me, that you have a real chance of living a semi-normal, comfortable life.

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Get Moving! EDS and Exercise

Exercising when you have EDS is no small matter, yet building strong muscle is an integral part of getting healthy and staying healthy. Since a primary feature of Ehlers-Danlos Syndrome is dysfunctional collagen that causes our connective tissue to stretch and tear, it’s essential that we protect them. How do you exercise and still protect your joints? How do you get started after months or even years of de-conditioning due to illness? I’ve been researching these topics to try to come up with my own exercise regimen and the information I’ve found takes a lot of the guess work out of how to treat your body to exercise and stay safe.

Why Exercise is Important

First, it’s important to understand why exercise is so critical to keeping the human body in optimal shape and researchers have come a long way on this subject in recent years, thanks to a group of Harvard scientists who discovered the existence of an “exercise hormone” dubbed Irisin in 2012. Irisin is present in all humans, but when you exercise, you produce much more Irisin.

Irisin has many functions. Irisin helps the body convert white fat to brown fat. Unlike white fat which simply gets stored in the body, brown fat is an active fat burner and energy producer, much like muscle, according to Dr. Joseph Mercola. He also adds that it’s great for heart health and may also help with endocrine dysfunction, as low Irisin levels are found regularly in women with PCOS. It also helps slow the aging process, induces greater insulin resistance, and helps to grow new neurons, improving cognitive function, according to Psychology Today. Amazingly, once you begin exercising and maintain a healthy weight, higher levels of Irisin actually protect the body from weight gain, as well. It’s also important in regulating stress and balancing our hormones over all. These are all things the spoonie population can benefit from, as we commonly suffer from fatigue, hormone imbalances, carbohydrate intolerance or diabetes, and cognitive dysfunction. Weight can often be an issue, as well.

But what’s also important is the mechanical function of growing strong, healthy muscle to shore up our loose tendons and ligaments. Building strong muscles helps to stabilize joints and keep us from subluxating and dislocating our joints, causing tears to these materials made fragile by our condition.

Additionally, exercise can have the added benefit of reducing our pain. Somatic exercise has been found to be very helpful in this goal and the more you exercise, the more benefits you’ll experience.

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How to Exercise Safely

If you’ve long been bedbound or experienced serious muscle de-conditioning, the best thing you can do is start slow. Consider beginning with clinical somatics, also known as Hannah somatics. This program is great if you’re still struggling with pain and autonomic issues that have made exercise seem impossible. Clinical Somatics provide you with safe exercises designed to decrease pain and regulate the autonomic system; making it great for zebras and a perfect way to get started with exercising.

Another great way to get started is by performing your own fascia therapy. Fascia is another form of connective tissue that gets ignored all too often, but is often as dysfunctional in EDS as any other connective tissue. Fascia is an interconnected web that runs throughout your body, wrapping muscles, organs and bone. When something is injured or unstable, fascia tightens, attempting to help. The unintended consequence is that sometimes it gets so tight that it can literally choke off the blood supply and nerve flow to whatever part of the body its effecting. This is where fascia therapy like fasciablasting is integral to getting you moving again and it has as many powerful benefits as exercise itself. See more information on fascia therapy here.

One of the best resources I found for exercise for all levels in EDS comes from a presentation given by a physical therapist for the Ehlers-Danlos Society called “Intelligent Exercise – How You Can Take Control with EDS.” It not only gives a lot of practical advice on what to avoid along with safe exercises to help you get started, it also explains why we need to take great care while doing exercise and why it’s important to still do it.

It’s a long presentation, but well worth the watch, especially if you’re just starting out and need extra protection to safely build up long unused muscle throughout. It provides much the same advice as other presentations and articles I’ve seen on how to exercise safely with EDS and gives you exercise examples that work gently and subtly to get you started. This is where I myself have started.

No matter where you’re at in your fitness, follow these basic rules to help protect yourself from injury:

  • Do not stretch before exercising or do exercise that focuses on stretching, such as yoga. Stretching actually loosens the tendons and ligaments, not the muscle! For someone with EDS, it’s more likely to cause a tear or dislocation.
  • Avoid high impact exercise such as jogging and things that require jumping, such as jumping jacks. Running and jumping put an incredible amount of force on your joints and cause subluxations, dislocations and jams. Our joints feel the force of five times our body weight when doing these activities and are hard on even normal, healthy joints.
  • Avoid open circuit exercise, or excise with large movements that don’t keep you grounded. Opt for closed circuit exercise, where you have at least two points of contact with the ground or equipment at all times, instead.
  • Protect joints by never overextending them during exercise (comparable to what normal, healthy range of motion indicates) during exercise
  • Start your exercise regimen at a comfortable level, avoiding too many repetitions or adding weights too soon. Soreness will only deter you from exercising the next day and too much weight can endanger your joints.
  • Protect your neck while exercising. Avoid putting your hands behind your head and always keep your head in a neutral position.
  • Do exercise your neck. Head and neck problems are prevalent in EDS and strengthening the muscles that support it is a great idea. The video above will show you how to do so safely and easily.
  • Stay hydrated. This us not only important for detox, it’s a must for people with POTS and NMH.
  • Workout at least 5 times a week and only take off one day in between. We begin to lose muscle as quickly as we’ve built it, stay in a routine to stay on track and provide what your body needs to keep succeeding.
  • Fuel your body with healthy food and ample protein to help build strong muscle and consider a supplement such as d-ribose to help give you added energy and fuel to develop string muscle.
  • Add to your challenge by opting for more repetitions and variety of exercise before stepping up weight. Weightlifting can only be done safely once you’ve built enough muscle to do so. Work your way up using only your own momentum and body weight. Again, the video above provides examples of how to do this and how to use walls and doorways to build resistance safely.

Once you’ve conditioned your body to move onto more challenging exercise, these are some great, low-impact ways of upping your game:

  • Work with a trainer or physical therapist who knows EDS and can help you design a workout regimen specifically for your needs.
  • Take a water aerobics class or make your own, a very low impact, but good resistance exercise that can be adapted by the user. I do my own every summer at my community pool. It’s good cardio in addition to strengthening.
  • Start T-tap, designed to be low-impact and deceptively simple, this workout program for all levels of fitness will give you a full body workout while protecting your joints and allowing you to go at your own pace. Their website even provides several exercises you can try before you buy the DVD’s, so you’ll know if you can handle it.
  • Utilize the Muldowney exercise protocol outlined in Living Life to the Fullest with EDS, designed by a physical therapist who specializes in treating zebras.
  • Check out some of the suggestions in this listing of exercises for EDS.

Cardio Exercise and EDS

Finding solutions for safe cardio is somewhat more challenging. Running is out if the question and personally, I worry about the wear and tear on joints of elliptical machines. Instead, opt for a recumbent bike, which will protect your back while cycling. Swimming is also another great option for low-impact cardio. Unfortunately, these are the only recommendations I’ve seen. Playing sports should generally be avoided, due to the need in most to run, jump and make forceful contact, but of course if you can modify something to make it safe and you really enjoy doing it, then go for it. The only limit is your imagination and the cooperation of those you do it with. Perhaps you love basketball. You can still walk, dribble and take shots, but running, jumping and jostling between players should definitely be avoided.

Be sure that when getting cardio exercise, you incorporate high intensity interval training, or periods where you go really fast with periods of slower, easier exercise. This has been shown in studies to be the most optimal form of exercise for cardio health and can even prevent common diseases associated with aging and extend your life. The older you get, the more important interval training becomes. It also helps you burn calories more efficiently and helps your body handle rapid change better by helping to regulate the autonomic system.

There’s no excuse to not exercise, no matter your level of pain and deterioration. Safe exercise can only improve these things and there are a variety of exercises available for every level of ability. If you have concerns, consult with your specialists about what’s safest for you and your specific conditions, how to get started and/or request physical therapy to help get you started. I myself had to do a several months of therapy with the fasciablaster before I felt ready to take on more, and for the beginner, if you are following all the instructions, it can be exercise enough while having the benefit of getting the fascia back into good working order, something that makes exercise a lot easier to handle!

Exercise is essential to keeping any body healthy, but for zebras, it’s especially important in shoring up our bendy joints with added muscle, helping to regulate our autonomic system, reducing our pain and stress and helping us to create more energy.

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