So I started my meds Friday, like a good patient. By Sunday, I was running to the bathroom just to run my hands under cold water to stop feeling the itch. By Monday? I had an eruption of blisters on both hands to the point that made them completely unusable for work. As each day went on, more blister clusters would show up. Then they started to go down my arms, on my torso, and the top of my thighs. I could only sleep if I had ice packs on my hands to numb the itch. My PCP added Hydroxyzine to the mix, but the blisters kept coming. Is not only were the meds not stopping the massive flare, but I can only guess at what the trigger was this time so I don’t actually know what to avoid.

I haven’t eaten any new foods. It has been warmer than usual here, so maybe it was the high humidity and heat of outside? I got some plants from a friend a few days before the flare started, but nothing I’ve not handled before. Was it the soil? Was it the canna lilies? Was it the mexican petunias? Was it the papyrus? Was it just the fact I was sweating? Was it the pennywort I was pulling up? Did it have nothing to do with the new plants? Was it stress from being busier than normal at work? Was it one of the soaps we just got in at work? I honestly don’t know for sure. I’ve assumed it has to do with the gardening at this point because it is something I can act on. I can wear fabric gardening gloves and just choose not to actively participate in gardening….as much as that’s a heavy blow to my soul.

But That’s Not All Folks!

All of that is incredibly frustrating. But that’s not the whole of the story either. Because while this is going on, I don’t feel sick. I’m not running a fever. I’m not vomiting. I’m not delirious. I’m not overly tired (except for now I’m on Benadryl instead of the hydroxyzine, so I’ve only got moments of functionality in between doses).

Despite that, I can’t wash my hair on my own because the pressure on my hands sets the itching and pain in the blisters off. Showering at all is….uncomfortable. It’s got to be cool water, and I can’t stay in there long but it also is hard to hold anything to scrub with. Even getting dressed isn’t something I can do easily because bra’s are terrible to try and put on with hands that aren’t functioning well.

And of course stress makes any mast cell flare worse, so you’re not supposed to stress about all these things while the mast cells are attacking your own system FOR NO GOOD REASON.

Okay…so…the reason is that I’ve got Ehlers-Danlos and it often comes with Mast Cell Activation Syndrome and that means that the mast cells get over ambitious after being triggered and start attacking healthy tissue because that’s how auto-immune disorders work. I know this. But I still don’t consider that a GOOD reason for this nonsense.

Add to this mix that it’s difficult to find a doctor that is easy to get an appointment with during a flare AND knows about mast cell diseases? I am lucky to have friends that are knowledgeable as well as doctors that are willing to listen to me when I suggest something. But they aren’t specialists with mast cell issues, so as amazing as they are, they’re shooting in the dark a bit as well. The last time I had a massive flare like this? I was sent to a dermatologist that was supposed to be the top of her game. She looked at me and told me it was poison ivy and that she could tell I don’t have mast cell issues by looking at it, then proceeded to insult the rest of my team and tell me I just wanted to be special and needed to accept it was just run of the mill poison ivy. It wasn’t poison ivy. Despite the fact I react to the most benign things…I don’t react to poison ivy, and wasn’t around it anyway. Despite the fact I had a steroid injection that should have helped a poison ivy rash go down…and it did nothing. Despite the fact none of the blisters were weeping or anything like a poison ivy rash. Which just adds to the mountain of stress as you’re just trying to find some relief and get back to a life.

You Are Not Your Productivity

And this last one, is the fight against my own mind. That because I don’t feel like I’m on death’s door…I should be more productive. I should be able to work. That falling asleep because of taking Benadryl is somehow a sign of weakness. That I’m letting everyone down by being in the middle of a flare and not knowing exactly what caused it and how to fix it immediately. Like I’m somehow a failure for this.

Yet, in a small moment of clarity, I recall a recent interaction. I met a wonderful woman at work that was wheelchair bound. She was telling me all the things she used to do before her failing health stripped it from her. I shared a bit of my own story and things I’ve lost. She looked at me with tears in her eyes, and asked if I ever feel like a terrible burden and useless. That if she couldn’t do things she loved and make gifts to bring smiles to people, what good was she anyway? That if she had to rely on her husband to do everything for her, wasn’t she just a burden that he’d be better off without? (Now, her husband was also shaking his head and giving her the stink eye during this, bless him. And you could feel the love from him)

I had told her, fully believing it, that she wasn’t worthless. She made my day. She still touched the lives of people, and that mattered. People she made things for in the past, I’m sure still look back and are touched. The fact that she touched so many lives is incredible. So just because she’s not doing the same things she used to, she was still a bright light that was needed in the world.

I’m not one to say that the universe has everything planned, but I think we needed each other. Because as I’m facing all of the frustration from my mast cells not being able to fully calm down from a tantrum, and feeling utterly useless…I remember this shining light of a woman. I still have to fight my mind, because it’s an ingrained thing that I’ve had beaten into my head. But it has helped.

But What About Solutions?

Well…I’m just now, over a week later, looking like I’m turning a corner with a shift in my medicines. I’ve also been in contact with a company that is run by an incredible couple called Dirty Unicorn about making a hand salve for me that may be better than the bar lotion I have currently. I’ve just ordered some soap from them because I love the scents they use.

I let my cat cuddle me and act like a fuzzy nurse. Just having him around to pet, feeling his weight against me, is soothing.

I talk to friends that have an understanding of what I’m going through. We talk about the problem, touch base, and then have a conversation unrelated to medical things.

I keep my primary care doctor informed of the progress or lack thereof as well as any changes I’ve done myself.

I have alarms set on my phone so I make sure to take my medicines on time and so they are apart enough to not interact with each other.

I put on meditations to help me rest. Even if the meds are making me sleep, they help my mind go to a better place while drifting off rather than focusing on the depression downward spiral.

I let my other half help me with tasks that I’d rather be able to do myself.

I try my best to be kind to myself, and reach out to friends that can give me a mental slap if I need it. Because this is stressful enough without my own mind making it worse.

I don’t respond to calls or texts unless I feel up to it, even if I can do speech to text. Because I wouldn’t ask anyone to stress themselves out and make their flare start back up, I won’t let anyone else do it to me.

And I just try to do whatever I can in the moment. Because there’s no way around it…the situation sucks. It’s horrible itchy, incredibly painful, and utterly miserable. I accept there’s nothing I can do to make the situation not suck. But that doesn’t mean I have to beat myself up over it at the same time.

I take the time to speech to text something like this just in case it reaches someone that needs to hear they’re not alone.

Also….I made some memes out of spite…because if you can’t make it better…make fun of your situation and spread the dark humor.

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

I Just Want Answers!

There is a line that most people, whether they’ve already got their diagnosis or are still searching, don’t like to talk about when it comes to the process of getting answers. It’s a very sensitive topic that often stirs up a lot of heated conversation. It follows the phrase “What do I say to get my doctor to diagnose me?”

There is nothing inherently wrong with this phrase. It is merely indicative of the frustration that we all feel when walking the path of finding answers. Imagine for a moment, that your arm is in intermittent pain with such intensity that you drop anything you happen to be holding. Wisely, you go to your physician to diagnose and fix this problem. Despite multiple tests, they tell you that your arm is fine and is showing no issue. To make matters worse, it never seems to act up while at your office visits. At this point, you KNOW something is wrong because it is impacting your ability to function at home and work. You get referrals for specialists in hopes that those that have an area of focus in your particular problem will know something your primary care does not. Yet it yields the same results…there is no reason that shows up in testing to account for the symptoms you are explaining. After a year of this, your physician is starting to show signs of frustration every time you see him. Coworkers and family members begin to treat you as if you’re just being a drama queen because if it was a real problem you would have found a solution by now. But you still KNOW that this is a very real problem that impacts your ability to do normal tasks and now your emotional well being as you deal with others in your life. You’ve tried to even find your own answers through websites and community forums.

Now imagine that through one of your many community forum explorations that you find a group of people that seem to have similar problems but have received a diagnosis AND treatment! Can you not then imagine that you would ask what they did to get their help? It’s a natural and understandable progression in the journey to find solutions. You’ve been wandering around in dark tunnels for so long and have now finally found a light at the end of the tunnel and you want to bolt full speed towards it before you lose hope again.

Walking The Line

So where does the fine line I mentioned come into play? What we can sometimes forget as we run full speed towards that light, it’s not in the direction that’s meant for us. It can lead us to make rash decisions or changes to our health that have damaging potential rather than lead to improvement. It’s the fine line of using additional information that will assist your doctors in helping you vs telling your doctor what you think they need to hear to get the answer you think you want to hear. It’s incredibly tempting to exaggerate your symptoms or lie about what you experience if it will increase the chances of finding relief after so long of searching and suffering.

Coming up to this metaphorical line has a lot of benefits. It brings with it talking about symptoms that we have overlooked along our journey because we have normalized them as a part of daily life. It carries with it possible diagnosis to suggest to our physicians as they walk this road with us. It brings us down tunnels that we’ve previously overlooked. If we allow ourselves to trek these options with caution rather than give into the desperation that threatens to take hold, we give ourselves the proper time to make sure that this will lead us to the best options available.

It’s Not Easy

It’s about on par with the effort it takes to ice skate up an incline. Though I write about it, I’m currently struggling with it as well when approaching my chronic breathing complications. I’ve had to learn the hard way when I pretended my breathing issues presented in different ways during a time in my youth just so I could have the treatment I was convinced I needed to improve it. It ended up creating greater breathing issues as well as having an effect on my heart during treatment. Thankfully, it was completely reversible once I stopped the treatment, but I was lucky. It also served to profoundly confuse and frustrate my doctors rather than give them better diagnostic information. Despite this, I find myself STILL briefly considering telling the pulmonary and ENT things are worse than they are out of frustration of not having an answer after 15+ years of trying.

What keeps me from falling to the wrong side of that line is two main reminders to myself. The first, is the memory of my past experience. The second? Knowing that I’m not only helping myself the best way possible, but future patients that may be experiencing the same issue. If my physicians and I find the right answers while being honest, that information will spread and help others. Maybe not directly, perhaps it will be in passing conversation during a conference or a publication later down the line. Perpetuating the exaggeration or intentional invention of symptoms only serves to make a correct diagnosis more complicated for future patients.

But My Doctor Still Won’t Listen!

Not all doctor and patients are a good fit for each other. I went over some of this in a previous post. While there is always the potential to have a bad doctor, it’s wise to remember that every doctor has their area of comfort and specialty. Sometimes this means that you need to find a doctor that is a better fit for your needs. If you can’t find an answer together, it may behoove you to get a second opinion. This should not be an angry slight at your doctor, but rather seen as just a move to search down the dark tunnels with a different guide. Though it should go without saying, getting a second opinion should also not be used as doctor hopping until you get someone that will give you the answer you WANT.

Searching for answers it tiring, and my heart goes out to all of you facing similar paths that I’ve gone down and those that I’m still traveling. I wish with everything I’ve got that everyone could find answers and treatments that worked the first time. But since this isn’t an option for many like me, I will extend my wish that your journey bears sweet fruit…no matter how long it takes it to get there. Take the time and compassion towards yourself that you deserve to make sure that what you’re heading towards is an answer that will lead you to your true light at the end of the tunnel rather than into an oncoming train because you denied yourself that critical approach.

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.

First, you’ve got the process of getting diagnosed. This isn’t the same as figuring out if you’ve got an infection; take a culture and get the results back in a few days. While some of them do take a simple blood test, many Syndromes are much more complex and go on a sliding scale. They can often mimic other diseases or conditions or be hidden under other co-morbid conditions. When you condition is on the rare side, it can create even more hurdles as you need to find a physician familiar with what you’re experiencing. All of this together makes the nature of the process potentially frustrating and exceptionally long.

Second, you have the emotional and mental impact that comes with a chronic illness diagnosis. While short term problems are nothing to shrug off, a diagnosis of such an illness like Ehlers-Danlos or Fibromyalgia or Marfans brings with it the necessity to change the way one looks at their own life from there on out. It becomes something that has to be adopted into many aspects of daily life.

When Pandora’s Box Opens…

It was said that when Pandora disobeyed the orders from Zeus and opened the box, all manner of dark and malicious things escaped, but Hope remained safely inside…though in some versions Hope is the last thing that flies out as she cries. The idea of hope has a lot to do with my analogy to the Greek myth.

There is an aspect of relief and hope when receiving a diagnosis, even if it’s not what you would prefer to hear. You finally have an answer for experiences or pain you’ve endured. You get to go over a plan of attack that can help to manage your symptoms knowing better why they’re appearing. Sometimes most of all, you stop feeling so crazy that nobody knows what’s wrong with you. You finally have answers after all this time and effort.

But that is also a double-edged sword because you also lose some hope. When I got diagnosed with hEDS…there was no more hope of getting better. It becomes learning to look forward to making certain symptoms better for as long as we can. Turning your hope towards abstract concepts of “in the future some day someone will hopefully discover something” rather than being able to research cures. I can’t begin to explain what a blow that is. I had to accept that I was going to slowly degrade no matter what I did…or didn’t do for that matter. That many things I was hoping physical therapy would allow me to return to, were no longer considered safe or advisable for someone like me.

I felt like I was grieving for a part of me dying, and there’s days that I still do.

Is It Better to Know?

Many that get a diagnosis that is less than ideal have thought to themselves..is it really better to know? It feels as if it was better before I knew. The short answer is of course it’s better to know! Whether the answer is a fixable problem or a problem that can only be managed, it is better to know. So why can it feel like the worse thing in the world?

It’s that grief thing. Because lets face it, most of us don’t like change in the best of circumstances and when we choose it. Here we are, trying to better our circumstances, and you get a pat on the shoulder with a “Sorry, you’re fucked” and sent on your way. Okay, so it’s normally not that harsh, but it can certainly feel that way in the middle of it. You grieve your hobbies, your independence, your health, your future, your dreams and goals, and the idea that you’ll get better. And you wonder how it can feel like the worst thing in the world? Really?

Imagine for a moment, the last time you went to a physician with a serious concern. Maybe for you it was the flu. Maybe it was a sprained ankle. Whatever it was, now imagine that you are told the test show nothing is wrong with you, just rest and it’ll get better. Except after a whole month, you feel just as bad. You go to doctor after doctor for a few years and finally someone recognizes what’s wrong. HOWEVER…there’s no cure. Sorry. You’re just stuck with whatever you’re dealing with right now, they only thing they can do is help you deal. Would you have handled it well? Do you think you could work and maintain a healthy social life?

So of course it’s going to feel pretty terrible.

Don’t Let It Stop You

Though hope can be dim, never think that it’s out completely. Join a support group to find what things others going through similar have found to bring joy back into their lives. Find a therapist that is knowledgeable of your condition or chronic illness in general. Look for aids geared towards helping you continuing hobbies that you love or find someone that can go with you to help ensure your safety. Go to conferences.

Do whatever you can to improve your situation. You were given the gift of a diagnosis, use it to better your life as best you can. Cry, grieve, mourn…then pick yourself up, dry the tears, and use that emotional energy to figure out what to do next. But dear, dear friends and family, remember to allow those you love that have been diagnosed time and space to grieve. We’re trying our best but going through so much that it seems like we’re trying to go through a mountain by carving out a tunnel with only a spoon.