When I would ask these questions, I would often get answers that circled around how forgiveness is about being the bigger person. This, to me, always seemed a way to be passively prideful and arrogant about one’s ability to be above others who “are so lowly they allow themselves to be angry”. In short, a way of victim blaming those who are angry about abuses they’ve suffered. Or how it’s about healing the self, which, if taken in my previously understood context…I didn’t understand how forgiving others had anything to do with healing myself. It always sounded like moral high ground nonsense to me. A continued way to lord over people how enlightened you are more than anything dealing with truly healing.

This concept of forgiveness, always felt dangerous to me. Like letting a wound close on the surface while ignoring what is festering beneath it. Or trying to accept that deep cuts are just something that should be as serious as a papercut. Gently wash and let it close. It’ll all be fiiiiiiiiine. Even the very concept talking to an abuse victim about forgiveness felt blasphemous.

I have suffered a very deep betrayal recently, that I don’t feel a need to discuss in detail, simply to illustrate why this topic has come up in depth recently. And someone I care for, had suggested that I work on the forgiveness of this person, to be able to honestly wish the best for them. And I struggled very much with this. Because I can’t. Nor do I want to. I have no desire to wish them well or happiness or anything of the like. Was I a bad person? Was this something I needed to work on?

It was this specific that I brought to my therapist, that I went back to seeing because of this particular trauma. While I had my own strongly held beliefs on it (which I will go into), I was going to her to help heal myself. If I brought this to her, and she could explain this to me in a way I could maybe finally understand, I was absolutely willing to put the work into changing my world view.

To start, she told me a story about a woman who’s son was shot and killed by another teenager. The woman, visited this boy in prison, chose to buy him things he needed, and care for him. Even invited him to live with her when his time was up. He asked her why she did these things, for the guy that took her son from her. Her response was about enough hate and pain being in the world, she wanted to bring healing to someone that actually needed it.

As I sat there listening, I was torn between two feelings. One, was that the ability for someone to make a change from a grave mistake and to be seen as a person was a beautiful gift. The other, was this kind of thing was exactly the kind of thing I had a problem with, expecting other victims to do this kind of thing. In the spirit of being honest in therapy, I expressed this, and I was shocked to hear that it was for that exact reason is why she shared that story. Even more so to hear that my therapist, the one I expected to explain why this sacrificial idea of forgiveness was something worth striving for…said there’s no way she could do such a thing.

The rest of the discussion, we went into different types of forgiveness. How she saw my personal approach to a lot of my trauma as reflecting of forgiveness where I had never seen it. Her experiences with forgiveness. How forgiveness is just a word that means nothing on its own. What it means to heal one’s self after trauma. The validity of emotions. It was a really fantastic experience that I found myself feeling a sense of great relief after. It’s what brings me to why I’m writing this.

So often, we’ve been hurt. Family members, doctors, lovers, bosses, strangers, partners, law enforcement…… And we’ve been hurt in so many ways. Lies, manipulations, sexual assault, gaslighting, physical abuse, murder, racism…. And then we’re told by society that we should be the bigger person and show love in spite of all of these grave offenses.

I don’t prescribe to that. For me, forgiveness was reserved for innocent mistakes that were so minor and/or understandable that they could be ignored in the future of one’s relationship. You forgot to pick up bandages on your way here like I asked, and I really needed them. Okay, not the end of the world, totally forgivable. Mistakes happen. Cause me trauma? Whether intentionally or because they’ve got their own trauma they’ve never taken care of? I’ve never felt a need to extend that kindness. I still don’t. I don’t have any inner need to wish them any kind of joy or happiness. I don’t care. They fall in a “might as well be dead” category. Not because I’m spiteful and full of rage, but because I honestly don’t care about their existence anymore. I grieve the loss of a family member, or friend, or whatever the relationship was to me, and then “snip snip” they’re let go and carry as much emotion as any stranger I’d see in passing. I have two people that were born into the same family, that will never be a sister to me anymore. They’re strangers. And I mean that with all the seriousness I possess. They could tell me that they’ve gone to therapy and have a happy relationship and turned their life around, and while I won’t celebrate the change, I’m not going to be bitter they’ve decided to be a better person. I just care as much as if some stranger in the grocery store told me the same. Uh huh…cool…good for you I guess? Go have your happy life, just do it away from me. We will never have a relationship, even if they take care of their own shit. That fact is absolutely okay with me. My grieving was done years ago.

The other half of this process, was to understand that they are still a person. They are a product of their growing up, their genes, their actions, and the consequences of those actions, and experiences out of their control. This is no way is an approval or an acceptance for what they’ve done. It is merely a logical acceptance of humans are terrible animals with the potential to cause terrible pain and horror for a variety of reasons that brought them to that point. It doesn’t cause an empathizing with them. Rather, it allows me to no longer agonize over the “Why did they do this?” question. Because if I can acknowledge that the reason someone I thought was a friend was just in reality, a toxic person that made poor life choices because they’re simply broken and currently incapable of being otherwise…the details no longer matter to me. It also makes it an easier thing to release them from my life. They’re just a broken person, but they’re not my responsibility. If I hold myself responsible for my own actions, I can refuse others access to my life if they refuse to do so. So when my recent trauma happened, and the person first insisted on talking to me to “work things out”, I was already at the point of detachment. Nothing they could say would make it okay, or change the trauma. They did an unforgivable thing in my eyes, so, there’s no reason to give them the courtesy of my time and energy anymore. They were just a broken person, that made bad choices, made excuses for their bad choices, and I excused myself from being any further part of that. Especially when I had spent so much time on therapy on moving past it…on me and removing the control that trauma had on my state of being.

To me, this act was also something I didn’t think of as forgiveness. This was self preservation. While I’m sure many will disagree, it was explained that my way of approaching things was actually a type of forgiveness. Yes, what I reserved for minor transgressions was a form of forgiveness. But healing to the point where the emotions of the trauma can be released so they’re no longer causing you suffering? That’s the same spirit of forgiveness, even though it doesn’t have many characteristics of the other. If the emotions are no longer hurting, and you’re able to heal….then why try to expose yourself to further trauma for the sake of some imagined moral high ground? What can be gained from that? Isn’t it important enough that the cycle of trauma is broken? It’s a forgiveness of the circumstance rather than the individual.

When we spoke about it in that context, a part of me celebrated that I was being told that it’s not the mark of a terrible person to refuse to offer forgiveness to another. Whether they ask for it or not. Whether they make an effort for change or not. It’s okay to have your own limits as to what you can handle for yourself. It’s okay for someone to be able to go to the killer of their son and offer them forgiveness, but it’s just as okay for another mother to never hold forgiveness for the same kind of person. Neither one is better, as long as whatever they do allows them to heal for themselves.

If going to your abuser and offering them love and kindness they probably need to heal helps you release your own pain and suffering, that is an extraordinary gift and go for it. If you choose to cut off your abuser, mourn the loss of who they are to you, and learn to move forward and find new joys? That is an extraordinary gift that you’re giving to yourself. One is not better or bigger than the other. And if that’s hard to digest…what has more meaning? A crude handmade gift because the person has very limited finances or the gift that was bought with love and consideration? Or maybe, just maybe, they’re both equal of meaning because each is doing what they can with what they have.

In our lives, we have and will continue to have so many experiences in which we will be hurt or will hurt others. Some of them, we will be able to apologize and/or forgive. Some of them, we won’t be given the opportunity no matter how desperately we wish for it. Some of them, we will be unable to out of conscious choice. The important thing, as far as I’m concerned, is that we move forward with awareness and compassion. Whether this compassion needs to be directed to only the victim or the aggressor, or to be shared with both…I’m not about to tell anyone what they need to do or feel. Life is too complex for the answer to be simple as our society would have us believe.

I do believe that it has enriched my life to be able to see those that have visited trauma upon me, as people. Not as people doing their best, or victims of circumstance, or as monster…simply as people. I am comfortable in the fact that is where my compassion for those people ends. I’m also okay with the fact that some see my take on things as encouraging negativity or some such thing. That’s their cross to bare, not mine. I’m content to focus my energy on healing my own trauma so it releases any emotions that aren’t my responsibility to carry. I’m good with sometimes the challenges I face in my life don’t leave me with enough energy to spend on caring for others that have proven to not have my best interests at heart.

If all of that wasn’t enough? Being angry on a constant basis is exhausting. To be angry over what some broken person did all the time? I don’t know about any of you…I don’t have time for that. I have my health to worry about, walks to take, wildlife to meet, and plenty of art to make. I have friends, blood family, and chosen family that deserve much more of my time and attention. More importantly? I deserve that positive interaction.

So whether you call all of that forgiveness, or you have a different vocabulary for it, I hope how you move forward only goes to bring you profound peace for you, and you first and foremost. And in case you need to hear it…You’re allowed to cut off those that have hurt you no matter how they’ve changed or how many times they apologize. Even if you’re married, or they’re your parents, or they’re your best friend. You’re allowed to not feel love for them anymore, just as others are allowed to forgive completely. It’s okay if others haven’t forgiven you, they aren’t required to, so do the important work that it will take to forgive yourself. Do what you can to be the best version of yourself, and screw the idea that your version of forgiveness has to look the same to everyone else to be valid.

After having the world’s stupidest period my whole life, I finally get a doctor who says “hey, PCOS” and doesn’t do anything.  But, after a couple of years of my period playing with me (everyday, nada for months, then need transfusions) a good doctor repeats the PCOS bit and then does the newest version of a DnC and I find out I have Cancer.  Endometrial adenocarcinoma, stage 1/3.  Look at me go.

Then a CT scan shows several inflamed lymph nodes nearby and either they’re just grumpy because I have an infection (my sinuses have hobbies) or they’re mad because there is cancer in my body, or the cancer has spread.  So. February 11 I have a total hysterectomy and they’ll take out the grumpy nodes and test them.  It will be ten or more days before I find out if my cancer has wanderlust. Seriously, look at me go…nuts I think.

No two people react to the pressures of cancer, strange barely known diseases, or other continually vicious diseases.  Some are anxiety zebras, but others are giraffes or elephants, whatever.  Personally, I think I’m a pied aardvark, and yes I’m just that weird.  Or maybe I simply feel that different from others I’ve spoken with who’ve faced cancer or other attack diseases.

I feel like I am cocooned with numbness, discounted and floating watching things happen “over there”.  Sometimes I feel like I’ve been struck by lightning and panic overwhelms me.  I’m not sure how to deal with it except to endure and hope to make it out the other side.  There is no set of rules or map to make it through this with who you were before completely intact.  Not that change is necessarily bad, but in the midst of dealing with something like cancer it’s a bit “et tu, brute”?

Friends and loved ones want to help, and in that desire, can add to the pressure and suffering of the patient. Some folks want the wailing and hugs, others want distance and calm. People like me will reach out when we can handle it and pull back when it just makes things worse.  It helps me to know people care, I just can’t handle the overload. I suggest that family and friends let the patient know you care and will help, but also let them feel it’s okay to ask you to step back a bit sometimes.  It’s horrible to feel overwhelmed and afraid to ask people to give you some space.  We’re trained by society to feel that it’s selfish not to accept help, even if it adds to the pressure and stress we are feeling. 

The time after the operation, waiting for the test results will be my worst.  I expect I will try several friends and family members patience.  I can only hope that they understand there will be times I want to talk with them, others I won’t.  I may do everything to avoid talking about “what ifs” and cancer, and it might be the only thing I talk about.  I just hope they can go with the flow, and make this nightmare a bit less in charge.  

Administrator’s Notes

Your friendly Coyote in Zebra Clothing here. If it wasn’t implied by this post being shared on this page, the reaction talked about here is completely normal. Nothing that was talked about is unhealthy or dangerous.

A lot of this comes down to understanding what someone is going through rather than assuming you understand. Respecting that, as stated by the author, no two people react the same. Whether not wanting to display their grief publically, whether they want to be hugged, whether they cut off their emotions and talk about it clinically.

What we should all be doing when someone is facing a life altering diagnosis, is listening. Being there as they ask us to.

It is easy to sit and say what we think the person should be feeling, or how they should be coping. But as long as they are moving forward, even it if is extremely slowly, then let them go at their own pace. Be supportive in ways they ask you to be supportive.

While the author doesn’t have EDS, and while cancer is a disease that we’ve often come to be able to cure, that doesn’t take away from the emotional impact. And as stated in previous posts, diagnosis is a Pandora’s Box. It’s grieving and we should all know that grieving is a complex road for all of us.

I am not concerned that they’re going to get in contact with anyone on my team and spill all my secrets. I am concerned that they’re going to take up time of anyone on my team with information my doctors are already aware of or exaggerate their story because they believe they need to help by making sure a member of my medical team take my perceived infractions seriously. It’s this kind of thing that leaves me feeling betrayed and infantalized rather than assisted out of caring. However, after discussing with a few people that work in the field of medicine, I decided I also needed to take a breath and acknowledge that having someone come and talk to them can, in fact be helpful. So…now that you’re aware of how this idea was born, onto the main event.

When You’re on the Outside Looking In

In general, we are all grateful for those people that are looking out for us. Though I will grump and growl (and I’ll rarely admit this to someone’s face) I am typically grateful when a friend makes me sit down when I need to. I’m so used to pushing past everything, I may have a tendency to forget that I’ve got limits I should be adhering to. It makes it even more complicated when I can go from functional to including words like “shmruffle” in a sentence and expecting that the person I’m talking to will comprehend what I meant.

There’s currently one member of my team I’m in regular contact with, a few that I’m on semi-regular contact, and a few that just kind of pushed me off till I’ve got other things sorted. That’s a lot of people taking blood and samples, running diagnostics, and giving orders. When I was given the green light to start walking, there were several people that jumped to threaten calling some of my medical team. To them, I’ve been talking about the frustration of not walking, and not being permitted to walk, and there I was walking around outside. In their mind, the frustration had gotten the best of me and I was making a desperate escape from the confines of my knee scooter.

There is usually such a long mental checklist to most things I do, and I don’t often share each and every conversation with those around me. I’m sure it seems reckless or straight up dangerous to some people when I’m all of a sudden walking or trying out a new treatment. Some tasks I’ve been given, induce pain and it doesn’t help that I’ve got a lot of morbid humor to me when I explain what I’m doing. Applying silver nitrate becomes “using a death stick to murder the inside of my ankle”. Not exactly a mental image that screams safety and confidence in my approach to treatment…I know. It creates an atmosphere of accentuated concern among some of my close folks. It’s hard to picture that I’m sitting here, wincing and squeaking in pain willingly, then be happy and chipper when I talk about how much I hate it, and then acknowledge I’m often not healing as a normal person. To most, it really seems like there is a communication or adherence to orders issue that is probably making my circumstance worse.

It’s for this reason that I try not to get too annoyed with those that have a tendency to “mother hen” around me. Sometimes, I legit need to be yelled at to sit my ass down. Other times, they’re only seeing the small bits and it feels like conflicting information in their mind. Aside from being psychic, it is really difficult to know which is which unless you’re part of my medical team. While I know that I’m following orders and telling my team what I’m doing and the reactions that come about…that’s just me and how I personally approach life.

Doctors Only Have the Information Provided

There’s an issue that comes up when it comes to patient care though. As much as we wish they were magical creatures that could always divine the correct diagnosis and treatment, even the best ones are only as good as the information they’ve got to work with. If I had been walking around in the yard barefoot while I was supposed to be having it elevated and yet not giving that information to my medical team…that’s a problem in helping my doctors diagnose the core of the issue. Same with if I lied about treatments or reactions to said treatments. I would have been hurting my chances to heal, and that has less to do with my doctors and more to do with me providing false information.

Sometimes, as I mentioned above with migraines, my other half has provided important information that I have not mentioned during a visit. A medication I forgot to mention. A symptom that slipped away from my mind. It’s one of the reasons that I am relieved that he comes to most visits with me. If I forget something, I’ve got backup! For my appointments, it’s not so much that I’m needing someone to make sure I tell the truth as much as it is making sure I remember all of the relevant information to share without carrying a scroll and dramatically rolling it across the floor to read off of.

There are those that should have someone come with them to appointments because of their tendency to contaminate the truth. This may be because of declining mental ability due to dementia. It could be that they’ve got another mental hurdle creating a compulsion to decorate the facts. Whatever the reason, their health and care will be compromised if their medical team does not have access to the reality of their situation. Those family and close friends become invaluable.

Helping a Patient isn’t a Competition that Wins You a Gold Star

Because of my limited mobility, there’s been times when a friend has helped me get to appointments. There have been at least one that had it in their mind this was a perfect opportunity to throw me under the metaphorical bus. They wanted to tell the doctor all the things they thought I was doing wrong. It was like screaming “I’m being the bestest helper friend and telling the doctor because I care the mosterest. Look at me being the bestest helper!”

Most people don’t intentionally go out of their way to provide false information. When it happens to a significant degree they usually call it Munchausen by Proxy and is considered abuse. But, as annoying as it is, most really don’t have malicious intent. It’s more often just…slightly misplaced and misdirected.

Giving false or exaggerating information to a doctor, can be as harmful as neglecting to share important facts. If I’ve been walking and keeping my team informed about the distance and updating them on symptoms, this is important. If someone shares that the walking has included going up and down flights of stairs, this could be an important tidbit, especially if the core issue had been getting worse. However, if that someone was exaggerating a single step down that was occasionally taken to make it sound like I was taking flights of stairs…this is giving the doctor an inaccurate correlation.

Often, they just are too focused on the need to be seen as a kind of White Knight to the patient in question. Their focus is to be seen as important and significant. Too many times, an impressive amount of self deception is involved to where they have convinced themselves that without their involvement, the patient in question will fail to receive the proper care.

This is complicated by times when their input may have actually been invaluable to a situation. Any bit of self deception that was starting to chip away, gets plastered back up and they feel even stronger that they need to share things to “save you”.

What Can You Do?

From a patient perspective, take a step back. Take a few deep breaths. Then take a fresh look at what’s going on. Is this person providing any information that has been helpful? Are you angry and upset because they’ve embarrassed you with information you were uncomfortable sharing, or because they’ve complicated your case in unnecessary ways? There are some people that a simple conversation will suffice. Others, you may try to talk to your doctor and see if they’re willing to ask them to leave the room. Call the office and explain the situation so it can at least be noted so the doctor can be aware.

If you are the friend or family member reading this, I do hope you’re not defensive. Take a hard look at your approach. Are you excited about sharing information about the patient? Do you find that you’re making a long list of notes? Do you often interrupt the appointment to interject information before the patient can fully answer? Do you wish you had a direct number for the doctor so you can call them when the patient does something wrong? Have you called the office in between appointments just to leave a message for the doctor about something the patient has done wrong? If the doctor gives the patient more direct attention than you during the appointment, do you feel like they ignored your input? Has the patient or the doctor asked you to let the patient speak for themselves when you try to give information?

If you answered yes to any of those, you may need to take a step back and really evaluate what you’re trying to accomplish when talking to their doctor. Yes to more than one, and you should REALLY take a step back. Your desire to be helpful should not be overpowering actually being helpful. The first priority is and should always be to make sure that the patient is getting the care they need. It should not be an excuse to get a doctor to agree with your personal views on the life choices of the patient. It should never be a gossip session to share dirt on the patient so they’re embarrassed and more likely to comply with what you personally think is best.

Information is power. Almost all of us have had heard Uncle Ben tell Peter Parker “With great power, comes great responsibility” at some point. This is one of the many examples of how that phrase can be applied to real life situations. Sharing information with the doctor of someone else is a responsibility that comes with very real consequences. Take it seriously. Use the power of that information with awareness of those consequences rather than letting the feeling of wanting a gold star for your noble effort creep in.

When I say that it’s been one hell of a journey…

I’ve had multiple procedures done on my right ankle and it still is not behaving, despite having one of…if not the…best in the field overseeing it. The first surgery was about 2 years ago, it might be longer at this point because I’m honestly not sure and it’s not extremely relevant the exact date. It’s gotten Pseudomonas, a car wreck that caused the stent to migrate, MRSA, a tunneling wound that went about down to the implant, Chronic regional pain syndrome(CRPS), subluxation of a different area of the foot bones that shouldn’t be happening, intense allergic responses that caused a fair sized area of skin to erupt in terribly itchy blisters and then the top layer came off, weight gain and muscle atrophy from the inability to get up and walk, and a granuloma that just won’t take the hint and die so we’ve named it Rasputin. We’ve had 3 occasions where I had to go into the OR get work done on it, and I think we’re up to…5 or 6 procedures in the office ranging from removal of the wayward stent to debridement and stitches. Meanwhile, there was just a single OR visit for the procedure on the left ankle and it’s happy as can be.

We have no idea why it continues to have all the problems it does DESPITE following orders to the best of my ability. I’ve got saline to clean it and wear a shower boot so it doesn’t get wet with tap water. I’ve been mostly on a knee scooter to get around. Needed to wear a brace off and on, and especially to sleep. Had to pack a wound with using packing gauze and sterilized tweezers. Use silver nitrate on it daily for a while and it occasionally burned significantly. PICC line with daily infusions when one of the infections wouldn’t go away. Changing the bandage of this blasted thing, several times a day, for the better part of the entire time.

We’ve tried iodosorb, silver nitrate, acetic acid, carbolic acid, calmoseptine, stitches, Aquacel AG bandages, high absorbency bandages, gauze, different types of paper tape, colloidal silver, essential oil blends, diet shifts, medicated packing gauze, regular packing gauze, injections and I’m sure others I’ve forgotten. I’ve seen my podiatrist, infectious disease, acupuncture, my primary care, physical therapy, and even networked with other wound care specialists and someone that worked in hyperbaric therapy.

We’re still working on a solution that doesn’t involve an OR again. And it’s getting so very close, but we’re not quite there yet.

But with EDS, we’re in for a marathon, not a sprint.

Despite everything I listed above…I’m generally not angry about it. That’s not to say I’m always the epitome of sunshine and rainbows. There’s absolutely days when I’ve broken down in tears because I got less than ideal news or a new suggestion to try. I have my moments of “Why am I like this? What’s wrong with me?” or similar feelings. There’s also times where I’m so angry that it oozes into every room of the house like a bad smell, my other half says I’m “filling the house with Fuck You”, because I’m so tired of looking at it and not having answers. That’s just being human, as much as emotions are icky and often involve unwanted fluid leaking out from around your eyes, it just comes with the gig.

Maybe I’m not angry all the time because I know it’s confusing. If one of the most experienced surgeons for EDS feet and ankles is confused…I’m personally more intrigued and interested in helping any way I can rather than wasting time on being angry over something that has no blame to place.

Maybe it’s because I know we’re a complicated mess where not a lot of doctors understand in general let alone the small nuances. I can’t be upset at the fact they’re confused, when there just isn’t information commonly available for them to research. Let’s face it, enough of us have seen when our friends post a bad headline on a subject that could be easily researched and learned about. This happens so much, educated folks put out articles to counter it. I’m still haunted by the fact some people needed to be told Sticking a Wasp Nest in Your Vagina is a Bad Idea. Seriously ladies…WTF? Back on topic, doctors are still just human, no matter how much we wish they were so much more. So if we can’t get people to research obvious things…you’re expecting every doctor that already has a full plate with every other patient to be able to hunt down information on your specific set of weird when you may be their only EDS patient? Sure, I could wish that it would be the standard. However, do remember that just because they graduate with a degree that says they’re a doctor…it doesn’t mean they’re at the top of their class and they’re a super geek with an eidetic memory. Also keep in mind, for a large population, they don’t need to be.

Maybe it’s because I know that because we’re a genetic mess so sometimes there’s no easy answer, I’m not expecting my visits to be super productive and helpful every time. Sometimes, they’re just checking in and making sure it’s not worse. Sometimes it’s planning for the next step. Sometimes it’s drastic steps forward. It’s very fluid. But even on the days of rapid change, we’re not sprinting towards a finish line. We’re in a long marathon with a never ending path of hurdles along the way. It doesn’t mean I stop hoping for simple and easy answers, it just means I adjust how much I expect them. We don’t get an inhaler and most of our issues are resolved. We don’t get to take a pill and that’s the end of our complications. We don’t have to like it, but it’s in our benefit to accept the reality of it.

You say patience, I hear F*You

Now, despite me saying that I’m not angry all the time, one thing I do have that tips me over the edge is my level of patience. Oddly, this usually surprises people that know me. I do really detailed paintings on feathers, cross stitch, and beadwork with tiny seed beads. People assume I have the patience of a saint. I do not. I’m full of stubborn ambition that I will accomplish a goal that is set in front of me. If that means ruining 20+ feathers on my way to figure out how to get it to do what I want…I’ll do it. If my cross stitch project takes 5 years because it’s absurdly huge…I’ll do it. I may cuss at it and scream occasionally, but I’ll do it.

When people ask how I’ve managed to do all the things along the road to healing. Stubborn ambition. Stuffing stuff into an inch deep hole in my ankle will help it? Kay. Get out of my way. I got this. Walking on a very angry nerve will desensitize it so it stops screaming so loud? Kay. Someone walk with me in case I pass out from pain, but don’t try and stop me. Numbing agent wearing off but I still need stitches? Kay. I’ll yelp and whine, but just get it done. Stubborn. Ambition.

I don’t deal well with the concept of patience. I want a goal to work towards. Something to do in order to help me get there. It’s one thing if the pain is significant to the point where it’s excruciating to do much more than lie in bed. It’s another when you just have Rasputin the granuloma that follows its own rules for existence and mocks you by returning no matter what steps you take (or don’t take). When you aren’t in pain and yet you just have to kinda sit there and watch your other half do the majority of the house chores, and cook, and feed the animals, and……you get the picture. Yet Rasputin pretends to sleep and comes back with a vengeance without any discernible reason.

When there’s nothing to do to help, I go a bit stir crazy. I don’t like to just sit and wait and hope. If you tell me “you need to sit with it up for now because having it level with help defy gravity pulling fluid to your foot and therefor reduce the drainage and the moisture level”, I got this. I am doing a thing to achieve a specific goal. I will sit with my leg up at work and at home and try not to even be in the car for long. To the outsider, it looks like patience with letting myself heal. In reality, I’m working on a task. That task just happens to need me to be stationary. So if you tell me, “you just have to be patient”…to what end? Why? Will it help? How? I don’t understand. I need it to heal, if patience will not help in specific, I’ve no need for it.

This is accentuated if someone tries to tell me that I have to be patient to wait for the implementation of some divine plan. I have to learn to be patient because something else thinks it’s important for me and is implementing a plan without involving me in it first? Nah, I’m good, thanks. If it’s that important, said divine presences are free to make themselves known and I’ll be open to suggestion. Until then, I’ve better things to do than wait around in hope simply being patient will fix a damned thing.

How to twist it to my benefit

I’m not implying this is a good way to look at things. It works (mostly) for me, and I don’t have any designs to change it any time soon. HOWEVER, at it’s core, I’m sharing this because I’ve mixed in a bit of how I turn a flaw into something I can work around for my benefit. Did you catch it?

By definition, patience is the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset. Personally, being told to “be patient” has managed to work against any of those virtuous qualities I’ve worked to attain. So…I found ways to be patient, without calling it that.

I’ll call it taking the time to understand the reality of my circumstances and giving empathy to those that are working with me.

I call it discovering reasons behind why I should be stationary and simply wait for healing to happen.

I call it stubborn ambition when I need to accept the fact that it’s a long road ahead of me that may not have a pleasant ending instead of just a hop, skip and a jump to a full recovery.

I won’t call it patience, because to me, patience is when you handle it gracefully inside and out. To me, it’s not when you’ve engineered reasons behind why allowing delays or experiencing suffering isn’t something to be angry about. Perhaps you might see it otherwise and think with all I’ve faced, that you’d be angry and I must be exuding grace no matter what I perceive in myself. I don’t think it really matters though.

The most important thing I hope you take away in all of this is there is always a way to turn things in a different perspective to work for you. It’s not about giving people too much leeway on not doing their job when you have a doctor that isn’t able to help you. It’s not about forgiving and allowing yourself to be treated badly, it’s deciding what you can impact and what is out of your control and acting from there. It’s about shifting things so you are not held down by their actions or lack thereof. It’s not about never getting angry and heartbroken, it’s about what you do after in order to help yourself keep moving forward.

So it’s okay to not have the patience of a Saint. It’s okay to get frustrated or angry. It’s okay to yell and scream at your circumstances.

Just don’t forget that the significantly more important thing is to be able to come back from that in order to do whatever you need to. Be mad at the doctor that dismissed you, vent and rage, and then find one that is better suited to your care needs. Don’t give other people or bad circumstances the power over your life. Keep at it because you are worth it.

I’m not going to tell you to just be patient. Or good things come to those that wait. But I will tell you that you can’t find the good things of you stop looking for them. May you always find the strength to keep up working towards your goal one more day.

She says “Oh.”

*Fact: You never want to hear your doctor say “Oh” when looking at any test results

I say… OH???
Her…Your neck is bad. Really bad
Me…….. >Can I just get a new body? Because this one sucks donkey turds.
Her….. No, but let’s see what we can do.

Increase Gabapentin to max dose.  Another round of my favorite <snark implied> nemesis, methylprednisone.  Add Topamax for migraine control and to help with the tremors in my hands caused by the nerve damage in my neck.  Order an inflatable home c-spine traction device.  Caudal injections in my l-spine and SI joint . She wants an epidural block done on my c-spine .  All of this in an effort to put off cervical spine surgery for as long as possible .

It’s one of those days where too much happened in a very small time frame.  And now, I’m sharing my pity party with all of you.

But, I will process these new problems, and I will add these new meds to my overflowing pill planner.  And most importantly, I will tell myself what I always tell myself whenever a new roadblock pops up.

It is what it is.

If I cannot change the facts, fix the problem, well….. there is no point in making myself miserable over it.  We cannot dwell on that which is impossible to change.
               
*Pssssssst…  I still want that new body.  Preferably one about sixty pounds lighter, and ten years younger. 

For me, as a child of the seventies, none of the doctors in my pissant, backwards, steel town, had even heard of Ehlers-Danlos. Of course neither had my parents. It seems as if I always knew that my joints were different, that my body could do things other kids couldn’t. It started when I was quite young, I believe I was three when the doctors put me in hard, metal braces with special shoes, from my ankles to my waist.(think Forrest Gump) There were multiple reasons given for the braces… hip dysplasia and spontaneous subluxations of the hips and knees. Ankles that were weak, etc… I wore those things for two and a half years.

I can’t remember a time when I couldn’t spontaneously sublux whatever joint I wanted. I delighted in freaking out my classmates by pulling my shoulders out of socket, and then putting my arms behind my back, but in the opposite direction. I was pretty athletic, and I  sprained my wrists, knees and ankles more times than I can count. The doctors would be astounded at the enormity of the swelling in my sprained joints, and would insist that they absolutely *had to be* broken… Nope, always sprained. They told my parents that my joints were just “wonky”.

In addition to all of the problems with my joints, I also had numerous issues with my bladder and kidneys.  Most notably, the urethra tube between my kidneys and bladder wouldn’t stay open, causing urine to be trapped in the kidneys, causing massive infections.  The urologist would stretch it back open only for it to close up again a few months later.  I spent so much of my childhood in the pediatric wing of our local hospital, once staying for almost a month!  I had my favorite nurses, I  even learned how to ride my IV pole in the hallways.  But still, not one of my doctors put the puzzle pieces together.

I grew up, I joined the Navy, and even they thought something was wrong with me (I developed my postural tachycardia while in the Navy) Forever passing out whilst standing formation, waking up in medical, hooked to an IV, getting electrolytes. They even referred me to a rheumatologist, but they came up empty.
Then came my first shoulder surgery, my right one, it just would not stay in place. An open procedure was performed, leaving me with hellacious pain, and a scar from the edge of my neck, all across my shoulder blade. Still, no doctor caught on.

An accident in 1999 resulted in a posterior dislocation of my other shoulder, I’ll spare you the details, but after five separate surgeries on my left shoulder, it still subluxes if I dare pick up a gallon of milk with my left arm. Still, no bells went off in my doctor’s brains.
Another accident, more surgeries, tachycardia, degenerative disc disease, SI joint dysfunction, trochanteric pain syndrome, gastro, and the list went on and on.
Until one day, at forty-seven years old, I sat in my primary care doc’s office.
Me “My knee is bugging me, especially when it slides sideways out of place”
Him “Knees don’t slide sideways out of place ”
Me “well… mine do”
*proceed to demonstrate*
Him. *shudders*
“First of all, never do that again. And second, you are going to see a rheumatologist, because suddenly all of your problems make sense.”
The rest is history. Saw the rheumatologist, she confirmed diagnosis, and suddenly I’m a Zebra. And I have never felt so vindicated in my entire life.
I wanted to tell all of my childhood doctors, and my parents, and even my teachers
SEE????? I was not, and I am not, a hypochondriac.

Wow, that took a lot to write, but I feel good for getting it out there.
Thanks for *listening*
~Tammy

What Is Pain

We all feel pain, but…why? Simply put, pain is the message our body delivers to get us to change a behavior and avoid further damage. Our bodies feel an actual or potential threat, and send a message along our nerves that gives us unpleasant sensations that basically translate to “STOP DOING THE THING!”. As a general rule, the higher the pain, the more damage you’re incurring on your person. If you want detailed information on the biology of processing pain, check out this article on the NIH.

This gets complicated with chronic conditions that have a constant pain level. One, sometimes that part where it’s registering potential threat…is a bit paranoid. It sends us messages of intense pain when there is nothing actually harmful going on in our bodies. They scream if anything but the softest fabric is touching the skin or the wind is gently blowing. The second complication is that if you have things that ARE harmful on a constant level, your nerves have the potential to whimper like an abused housewife instead of scream every time something terrible is going on. That’s far from a kind analogy, but it is illustrative of how nerves can respond and can be helpful if trying to understand why if you feel better, it doesn’t always mean everything is improving. They give up trying to work towards fixing and take a “whatever, nothing is going to ever change anyway because it’s hopeless” attitude.

On a Scale of 1-10…

When doctors ask you to rate your pain on a scale from one to ten, they’re trying to assess the level of danger you’re in. If you are at the point your nerves only whimper OR they’re on the paranoid side, this makes using pain as a diagnostic tool difficult. For an example, the first time I pulled a rib out, it was excruciating. I had a hard time breathing, sitting, lying down, standing…you get the idea. The only way I was pain free was contorting myself in an odd position with one arm twisted above my head until it went back in. That was several years ago. When one goes out now? It’s annoying. I still have discomfort, and damage is still being done to surrounding soft tissue. My body just doesn’t register the intense pain anymore. It’s given up trying to yell that something is desperately wrong. So when I go to my physician and he asks how my pain is today, if I’m honest, I’d rate it probably at a 3. How it should be rated, however, is closer to a 7 or an 8.

So what do I tell him? Do I tell him how I actually feel or how I know I should be feeling?

Though it takes up more talk time, I normally decide to do both. I’ll explain, as quick as I can, that “I’ve got a skewed pain spectrum from chronic pain and that I walked to work on a dislocated hip so please keep that in mind. So I’d rate it on a personal scale of a 3 but it should probably be more accurately a 7?” while using a tone that has a questioning inflection to let them know in subtle ways that I’ve really no clue what I should be saying but I’m trying to be helpful.

On A More Personal Level

Though this presents its own complications talking with physicians, the larger hurdle for me is it plays a huge anxiety role for whether I have a valid complaint worth bringing up to the doctor or not in the first place.

Another contributor recently wrote a wonderful post about being told It’s All In Your Head. It’s a very real problem many of us face. Whether our brains are freaking out and there’s no discernible cause or we’re in so much pain all the time others (including some physicians) don’t believe we can talk calmly AND be experiencing that level of constant pain. I’ve been told in the past that I couldn’t possibly be experiencing a migraine because when THEY have a migraine THEY can’t function. A week later I was hospitalized as my muscles decided to give up and I couldn’t lift myself out of bed. Diagnosis? Status Migraines. How was I still functioning up to that point? Barely. But I had things to do so I pushed.

When you’ve got that level of stubborn ambition, to perform daily tasks while experiencing pain that would normally immobilize the “average” person…how do you decide when its an emergency? I’ve torn ligaments, had pains that my OBGYN related to labor pains when struggling with undiagnosed severe case of simple hyperplasia, dislocated and subluxed joints, status migraines, severe panic attacks that caused chest pains, been stung by a Man O’War, nerve pain from a swollen trigeminal nerve, and that’s just off the top of my head in this moment. Every time I thought to myself “I can still work through this, it’s not bad enough to bother my doctor…right? Severe issues that required medical attention and I was there wondering if I should BOTHER MY DOCTOR not because my doctor is mean and abrasive, but because I couldn’t decide if it was an actual problem or just something mildly annoying. My interpretation of pain is so skewed, my body is no longer sending proportional messages about the level of danger I’m in. It’s like if you accidentally severed a finger and your brain can’t figure out if it’s really severed or not. It’s pretty screwed up if you think about it. On more than one occasion I’ve been in the middle of explaining an issue to a new specialist only to suddenly realize they’re looking at me with an expression that is somehow a mixture of horror, sympathy, and disbelief. It always seems to follow with “and why haven’t you come to see someone before now?”. Well, because to me it didn’t feel that bad. Don’t know what else to tell you.

It screws with your perception of reality just a little bit.

What Can You Do About It

I wrote something about Becoming Your Own Doctor recently, and that aspect has something to do with it. The more that you can learn about your condition, the better aware you are of things to be a bit hypersensitive over. It also is important to discuss things and make your perception of pain known to your physicians. Only when you’re all on the same page, can everyone be making the best decisions possible in regards to your health.

Learn to be more comfortable with communicating with your medical team. I’ve learned the hard way that it’s much better to be a bit on the side of oversharing than to assume what I’m experiencing is harmless. If you need to, to ease any awkward feelings about bringing it up, pretext it with something like, “I’ve no clue if this is relevant, but I figured better to just inform you…”.

Discuss using different variables to your pain scale with your medical team. Let them know what else you’ve considered at that number or what you’ve considered a 10 to put it into perspective. Use descriptive terms and analogies or explain how it impacts your mental state.

Remember it is all about taking the best care of yourself as possible. If you happen to have a condition that alters your perception of pain, it’s best to acknowledge and work with it in a way that is as productive as possible.

Rare Conditions & Doctors

I’m currently blessed with a very knowledgeable team, but I wasn’t that lucky till recently. Many of my past physicians had no clue what was going on with me or, if they did, had no idea how to properly treat it let alone help me manage it. This doesn’t necessarily mean I had terrible doctors, and that is something important to remember. Ehlers-Danlos Syndrome is rare, and it is not often seen or diagnosed. There is some discussion over whether a larger population actually has hEDS and simply remains undiagnosed…but let’s leave that for another time. The issue at hand here, is that when you have a rare problem, your physician may not have had any experience with them since med school. I could easily climb up on my high horse (which in all honestly probably looks more like a drunk miniature unicorn) and expect that they take all the time required to research whatever is going wrong with me or to have all past school knowledge available from their memory on demand. I choose, however, to acknowledge that they’re still only human and relate it to how I could possibly feel and act if I was asked to perform a task of similar context and complexity. I can easily see me being annoyed, frustrated, and possibly even intimidated.

While this in no way excuses the behavior of some who choose to act rashly upon these feelings in such ways as prescribing medicine without researching the condition, patronizing patients, or just flat out lying…all of this is still what I would consider within expected human nature. I don’t have to like it or approve of it. It is, however, in my best interest to accept it rather than hold a physician to super human expectations.

If you’re able, you can use experiences like this to help find a physician that is better suited to your needs. Use your first appointment to assess your doctor just as they are assessing you. But what if you can’t?

Add +1 To Your Researching Still

With the internet, we’ve got the world at our fingertips. While it’s great for social media and pictures of cats, it’s also a beautiful tool for those of us that need to learn more about our own rare conditions. It will never replace the schooling that your doctors have gone through, and I’ll never advocate such a thing, but it can suppliment to help you get the best care you can.

Everyone should be aware of their own health and I could do a whole other article on how we need better health education in a general sense. With rare conditions, awareness is even more important. Your doctor should be a necessary part of your life, but YOU have to live in your body. Doesn’t it just make sense try and learn what rule book its playing by? Ever hear the quote from Norman Vincent Peale “Shoot for the moon. Even if you miss, you’ll land among the stars”? This should be your approach toward learning about your own medical state. Aim to be at the same level and quality as your own doctor when it comes to your condition. Even if you never get there, you’ll be in a better place than standing on the ground just looking up in awe and confusion.

Though one can find quick answers by a search through Google, may I suggest trying Google Scholar as an alternative? The benefit of that option is you get academic articles rather than merely blogs or community boards. These things have their place, if I didn’t think so I wouldn’t bother writing what you’re reading now. The downside is that while they’re often using much easier vocabulary than medical studies, they can often be more personal experience than valid medical knowledge worth relying on. If you need some suggestions on approaching a more academic article, I suggest this one from Sciencemag.org for some tips.

If you feel more comfortable with less sciency sounding, you still want to try to stick to articles that are on reputable publications. Remember that your goal is to learn, not find evidence of what you want to find so be careful when seeing sources like David Avocado Wolfe or Natural News. You want ones with links for further research and annotations instead of ones that use fear mongering tactics that simply warn against “Big Pharma”. Being wary of medications and invasive options is smart, making decisions purely on the fear of the procedure is cutting yourself from a whole avenue of treatment that has great potential. It’s all about looking at all aspects, weighing the pro’s and con’s, and deciding about risk assessment.

This Sounds Suspiciously Like Work

I seem to be a bit odd in the fact that I think the research aspect is exciting and fun. I enjoy listening to hour long lectures and medical studies. When my surgeon first suggested vinegar and water soaks for the pseudomonas infection I was battling, first thing I did was look up medical articles for how to do it properly and evidence of effectiveness. This wasn’t because I didn’t trust my amazing surgeon but because I wanted to be as informed as I could about what I was doing. It ended up being quite useful in the next ER trip when the doctor treating me had never heard of doing such a thing. Being able to discuss it in even broad terms took it from the initial reaction of “OMG you’re one of *those* that use fake medicine” to “Oh, really? And it was an actual medical study? Huh, sounds like you’re on the ball with this then. I might look into that”.

For most, the idea of intense research seems to be more tedious and reminds most people of school papers. My suggestion is try to find it exciting and interesting. Look at anatomy images and see if you can find the exact point of your pain. Read up on new procedures coming out and their success rate. See what other specialists are writing about. Try and learn what exactly is different in your body and how it works. Document your symptoms and see if you can discern a pattern. The more information you have at your disposal, the more likely you’ll be to feel confident that what care you’re being given is the best option for you. It can also be a good feeling when you’re reading over your own documentation and it says something like “fluid in the sinus tarsi” and you know EXACTLY where in the body they’re talking about! It’s a great confidence booster! I’m not saying it can’t be intimidating and scary sometimes to learn the details. I remember some of my lows when reading about how why my joints will never improve no matter what I do…and I ENJOY research! If you need, take a break for a week or so and go back to it when you’ve digested the information. This isn’t homework with a due date, so don’t pressure yourself. Take your time and do it when you can.

Though I’ve had some doctors that seem to get offended if their patient asks about an alternative treatment plan or diagnosis, my experience has been far more positive than negative. They’ve generally appreciated when I was at least modestly educated on my own health. And, when you think about it, it matters more that you feel you’re getting safe treatment than if you’re on best terms with your doctor. You don’t need to be rudely aggressive and intentionally antagonistic of course, but you’ll have more confidence to refuse something you KNOW is harmful if you need to.

The Hardest Part

As easy as all that can appear to some readers, there is a fine line between learning how your body works and working toward your benefit and fighting with your medical team because you just don’t like where your healthcare is right now. Extreme examples are easy to see, but as one gets closer to that line, the harder it is to see.

Going back to my recent infection as an example, I was sent to an Infectious Disease Doctor. His first suggestion was to get the titanium implant out, then do IV therapy, then get the implant back in. My surgeon wanted to try the IV therapy first. They both had very good reasons for each approach and I personally sided with my surgeon. Part of the reason I was on that side was merely that I didn’t want to go through the surgery again. I could have very easily gone in with a defensive attitude and told him what I’m not going to do right off the bat, but they wouldn’t be to my best benefit. Instead, I had a calm, rational conversation about my concerns with each option and we made a group decision WITH my surgeon to go the route the that didn’t jump to surgery. It turns out to have been for the best as tests came back showing the infection was already gone and my body is just being an angry zebra, but it’s the fact we had a conversation about how to best approach it considering all options. This was much better than going in an knowing little about the bacteria behavior or the risks particular to EDS.

I was pleased to be have gotten a doctor that I got along with. If it had been different, I still would have been more comfortable standing by ground and saying why I’m going to do the less invasive option. If I had not educated myself, I would not have been able to share concerns beyond “but I don’t want to do that!” and perhaps the discussion would not have been as productive. There are a lot of hypothetical outcomes, but it all comes down to knowing I did this the best way I possibly could. That while I still rely on them for their suggestion, I could feel confident and made an educated decision for myself for treatment. That I could ask relevant questions about risks and procedures instead of assuming everything they told me was 100% safe.

Not every doctor will be kind and receptive, but you owe it to your future self to do whatever you can to move forward the best way possible at the time. We should all be in this together.

Even if you hit some bumps along the road from treatment options you find out later that weren’t the best for you, you’ll be able to say to yourself that you do made the best choice you knew was available at the time. That’s all any of us can do.

What Exactly Are They Talking About?

There is a theory of healing, found a lot in the New Age Spiritual communities especially, that illness is simply a manifestation of a more emotional based issue. For example, a connective tissue disorder relates to a lack of the ability to be flexible in one’s life or cataracts is an inability to see the path one is supposed to be following in life. They also tend to believe that if one fixes the emotional hurdle, that physical healing will follow without the involvement of medical professionals. You just need to take a long hard look at yourself in the mirror to see what the illness your body has is trying to communicate with you.

Is There Any Truth To This?

Well, kind of and in parts. There have recently been studies about how mental states have an affect on one’s physical well being. There was even an article published in The Scientific American about it called The Science of Healing Thoughts, a link to Depression and Chronic Pain on Medicine.net, and even one from the Mayo Clinic on Pain and Depression. It has also been said in many different arenas that those with a positive attitude heal faster and more completely than those that are pessimistic. It is also known that when depressive states are at their worst, symptoms of chronic illness also seem to peak. So there does seem to be a pretty sturdy correlation between the two.

Even the idea of starting a dialog with your problem areas, though it can seem silly, has whispers of truth. Our mind is wonderfully plastic and it’s been shown that if given the right motivation or direction, we can shift our mood, thinking, and attitude. There’s even been studies about the Effect of Motivational Self Talk done. Our brains work on patterns, and it doesn’t always have to be from external influence. Repeating to ourselves things like “I can do this” or “This will get better and I’ll be okay” actually can have a positive influence on the hormone production in our brain. Basically…if you say it often enough…your own head starts to believe it.

Knowing this, it seems there is wisdom in taking that hard look at one’s self to find an emotional link to one’s physical problems. After all, if the goal is to heal, should we not examine every avenue available to us? I won’t hesitate to say that if you feel it could be of benefit, absolutely go to a psychologist and take advantage of their skills. Having an acute illness can be harrowing let alone having to deal with a chronic illness. We deal with a lot of physical and emotional hurdles and having help isn’t a bad thing as we navigate through them. I’ll include that when my mood and attitude are better, so is my ability to cope in healthy ways. But does this mean we can talk ourselves out of being sick?

When Positive Thinking Becomes Dangerous

The alarming part to this is when it gets to the aspect that people are being told they can think their illness away without the involvement of medical professionals. This is foolish at best and potentially deadly advice at worst. Those using this line of thinking are employing the logical fallacy correlation equals causation by taking general evidence and forming a solid conclusion to base their approach off of. I have personally known people that have allowed their illness to progress past the point of being able to heal well or at all because of advice such as this, so forgive me if hearing things like this make be just a tad bit aggressive. Now, I know, those that adhere to this philosophy will jump to point out that my aggressive reactions to such things just point to why my anger is holding me back from healing. I will happily counter than “negative” emotions aren’t bad and have their place…such as when I’m told to completely ignore my doctor’s advice that has kept me alive and functioning and rely on sunshine and rainbows instead.

As I noted in a related article about how exercise can be difficult, statements such as this victim blame. If you’re sick, it’s obviously your fault is what that statement actually translates to. If you were only fixing your own issues, you wouldn’t be sick. If you would only be positive, you wouldn’t be suffering. Only people that deserve it get as sick as you. Sorry folks, but no amount of finding the silver lining to what I’m going through is going to reprogram my DNA to magically produce proper collagen. No amount of loving being female will remove simple hyperplasia from my uterus.

There’s Nothing Wrong With Hope

Just like nothing is wrong with being optimistic. These are WONDERFUL things and I encourage everyone to live with hope in their life. But your optimism shouldn’t blind you from utilizing the best options available to you because the alternative sounds better. If we’re honest, of course the idea that just having faith can cure what’s wrong instead of going through painful tests, procedures, and taking medication. Who wouldn’t want that? Seriously? I’d take that option in a heartbeat if I could. Hell, I’m ashamed to say it, but I tried that for a while! I can also tell you that after the most recent injury and 9 months in a walking boot…the realization that I’m not going to improve without the help of specialists was crushing.

This is a side to optimism that is rarely considered by this school of thinking. What are the consequences when the positive thinking fails and the optimism has to face the cold reality of a person’s illness? I like to employ what I’ve learned to call optimal thinking vs optimism. If you’re interested there’s a book called “Optimal Thinking” by Dr. Rosalene Glickman that goes into more detail, but the long and the short of it is taking your issue and making a plan of action instead of just hoping for the best. If you plan for your future knowing your possible outcomes, you not only create a sense of satisfaction for creating a plan of action…but you can find yourself with less anxiety over the looming issue because of having said plan in place.

It doesn’t take your problems away, but it gives you potential paths to resolving. For a closing example, I’ve got a Post Surgical Infection in one of my ankles that has been resistant to 3 rounds of oral antibiotics. I’m currently on a regiment of IV therapy antibiotics 3 times a day for a month. If this doesn’t work, the implant gets removed, more antibiotics, and then the implant back in. I’ve made a course of action for the current worst case scenario with my team of doctors. I don’t have to be excited about that potential, and I am hoping with all I’ve got that this treatment works and I can just complete this therapy and be done. I can also relax in some ways BECAUSE there is a plan of action. I don’t have to worry about “Oh, what am I going to do?!” because I already know. When I feel anxiety over the slow healing, I can find relief in knowing I’ve got some amazing doctors watching over every aspect instead of wondering what I’m doing wrong and letting the bacteria work their way, unchecked, further into my system as I rely on blind hope.

I’m creating my own hope out of positive action and using that hope to find motivation for every hurdle that comes my way. Being positive isn’t about pretending nothing is wrong, it’s being proactive about what IS going on to give yourself the best chance on all fronts.

There’s No Magic Happy Pill

Anyone who has been on them already knows this. But no anti-depressant or anti-anxiety or personal cocktail of psychiatric meds are going to fix everything. You don’t go on them and all of a sudden everything in your head is better. So what do they do? There’s a lot of science involved and I’ll add some links at the bottom if you’re really interested in the geek part. But for the average Joe, clinical depression and anxiety disorders are caused by your neurons not firing right, producing the right chemicals, or reabsorbing the chemicals they already shot out. Now, that’s HUGELY over simplified, but that’s the reason that you can’t just think your way out. It quite literally is like trying to think away an itch from poison ivy or the pain from a burn. There are things to help soothe, but just hoping if you believe hard enough it’ll go away…isn’t one of them. Have you ever tried to ignore an itch that was so strong it was mind numbing? How did that work out for you?

So just like an anti-histimine can get your body to stop producing the things that are causing the itch to be so bad, psychiatric medication can get your neurotransmitters and your neurons to behave in a way that’s more conducive to functional cognitive thought. It’s all still YOUR head though. It doesn’t change the core of your being or make all the things that concern you go away. It doesn’t make you super social or happy. What it does do, is help your brain process the information you already have in more productive ways. They help. That’s it, ta-da, the end.

There’s No One-Size-Fits-All

Okay, so this can be the part that sucks. Everyone works different and as much as we’ve come lightyears in understanding how the brain works…there’s a lot we still don’t quite understand. That’s part of the reason we have so many different types of medication out there. So there is totally a trial and error period where you try and find the medication that works for you. It’s not a bad doctor if you get put on a pill that doesn’t agree with you, or that all psychiatric medicines are terrible. My first was Paxil and that played absolute hell with my system. I couldn’t produce artwork, which is my passion, I had no verbal filters for what was going on in my head, apathy was through the roof (I know, odd choice of wording there), I gained weight. It was terrible. But I’ve had friends that do wonders on it and that’s fantastic! Right now we’re trying out Lexapro and it seems to be working so far, but knowing that it might change in the future will keep me from being shocked and depressed when the subject comes up.

The Before and After

“Ah,”he said, “that’s your neurotransmitters going into overdrive.”

Yeah…I know. That’s why I’m here. I’ve tried meditation, diet, I can’t exercise much because of the hEDS, herbal supplements, so I no longer trust my own judgement as to what I need. I know it’s bad, I know I need help, and you’ve been through enough of the zebra things that I trust your judgement till I can get my own head working enough again.

As of right now, I’ve only been on them a week. Which although Lexapro is a relatively fast acting medication, is still early in the trial and error phase. Already, the static is clear enough that I can think and plan better. I’m not as caught up in an illogical, emotional whirlwind every time I interact with people…no matter how positive the interaction. I am more able to employ all the coping skills that I’ve learned over the years of dealing with these illnesses than I was just a few months ago. I’m able to recognize just how far down the rabbit hole I fell and make steps to come out of it. It gives me to tools to be able to work with what I have, to get things done. I was able to do some basic artwork for the first time in a year for the sheer enjoyment of doing it.

All of that…is more important than anything in the world to me.

An opportunity to feel like a real person and not a husk stuck in an invisible snow storm.

And if it means that I have to buy my neurotransmitters rather than rely solely on my own brain? I’m fine with that.

Links

How Do Anti-Depressants Work?
Why Do SSRI’s Take Weeks To Kick In?
How SSRI’s Work