“There’s just nothing we can do”

I have heard “There is just nothing we can do” too many times to mention. Most recently in regards to my health. As for my pain, “There is nothing we can do” as for my PTSD “There is nothing we can do” as for my muscle disease “There is nothing we can do” as for my bone disease “There is nothing we can do”. Now that was not prefaced with the “We have already tried EVERYTHING.” And yes, I tried many medications for pain, for PTSD, etc. I tried different modalities of healing: acupuncture, homeopathic, holistic, chinese herbs, you think of it? I have TRIED it! Not only have I tried it but I have had 11 years to sit here in this house and research what the Doctors don’t have time to. Because I just don’t accept “There is nothing we can do.”

When I first found out I had a rare muscle disease and was told there was nothing they could do, it just encouraged me to FIND something to do. I sought out every specialist around the world who specialized in rare diseases. I sent emails, letters, faxes, to every research scientist and doctor in the US, UK, and elsewhere. Because of my perseverance, and not listening to a Doctor’s word as the final answer, I found people interested in my disease. I found a research scientist in Minnesota, one in Canada, one in Florida, and a neurologist in England. Just because one doctor finds you unfixable, does not mean others will not look outside the box and try alternatives. Because of my choice to make these contacts, I was a part of multiple studies and was also studied at the NIH(National Insititue of Health in the US). Now, with all that being said, no answers have been found for me. But as 11 years have passed since I first contacted these doctors, I am still in contact. The neurologist in England thinks of new ideas, bounces them off of other doctors and presented my case at an international conference. I have a Lyme disease doctor constantly trying new things to help me. It just took a long time to find the right doctors.

So currently, there may truly be “nothing we can do” BUT the big difference in being told that and being told what the England doc says and even the Canadian doc still working on my case is this, “Right now, there is nothing we can do, BUT I am not going to give up and will keep searching for answers. As new techniques, new genetic tests become available, I will keep you in mind for them.” 

When it comes to health problems of all kinds, even mental health problems, I want there to not be a period at the end of a statement but rather a comma or even a but. Just not a period. Period means no hope. Period means done trying. And where a doctor chooses to put a period, I just move on to another doctor that will put a comma. Because I know, no one really knows why my bones are deteriorating any more than they know why my muscle cells are and I am atrophying, but one day, if they don’t give up during the wait, there will be an answer. Even if the answer only comes during my autopsy, I still consider that a comma. Because if anyone can learn anything from my body that will help others who are suffering from rare diseases, I will take that as a win. 

I have to admit I am tired. Tired of having to advocate for myself. Tired of having to remind and question and push for tests and answers to my medical issues. I wish I just remained in the back of the mind of those who can find answers. I’ve got a heavy load with insomnia, muscle pain, bone pain, lyme disease, trigeminal neuralgia, inner ear disorder, and then toss on PTSD and smell sensitivities and chemical sensitivities and holy cow you’ve got a storm! NONE of which I wanted, asked for, or can help. Lyme disease came from a tick. The muscle disease from genetic mutations. Inner ear disorder from the fever I got when I contracted Lyme disease from the tick. Chemical sensitivities from a struggling immune system because of the tick. And well we know where the PTSD came from. 

It is a heavy load. So that is why I need a comma. I don’t need a period. I’ve had enough of those in my life to last 20 lifetimes. My muscle disease symptoms started when I was 8 and I didn’t get a doctor to actually believe me until I was 30 years old and finally did a muscle biopsy! I had lyme disease symptoms since I was 18 and was finally tested for lyme disease when I was 40! Persistence. And I know doctors cannot all be miracle workers. I know my case IS rare. I know that my health IS complicated. I just don’t think it is too much to ask for instead of “There is nothing we can do,” to just throw in, ” right now! But I will keep trying.” Open ended. Leaves hope. 

I heard, “There is nothing we can do” so many times growing up and facing abuse and the system and the child services and the law enforcement and the lawyers, it is just not a phrase that I take lightly. THERE IS ALWAYS SOMETHING YOU CAN DO. YOU JUST HAVE TO CHOOSE TO!

Advertisements

40 thoughts on ““There’s just nothing we can do”

      • OK, it’s a super long, life-long story I’m going to condense the best I can. I’ve been in pain since I was a kid. Mostly muscle pain. Never a diagnosis…chalked up to growing pains. I’ve been facial/trunk flushing for years, since about 19. GI problems my entire life. As an adult, I would get injured doing the simplest things. Even a few years ago, at PT, they were perplexed that the exercises they gave me caused pain…”well, it SHOULDN’T cause pain” and walk away. My allergies are crazy…gluten,shellfish,figs,yellow squash, tape, too many medications to mention, scents, paint fumes…you name it. I get a new one each year. My vision is horrible. My eye pressure read as pre glaucoma 5 years ago. My eyes are gritty, I’m itchy, I had insomnia for at least 15 years…waking up at 3 am with a feeling of adrenaline running through my body. I have two heart arrythmias, which were not cured with a double ablation. 2 years ago, I started getting daily hives. My ribs dislocate or sublux almost weekly. All my joints are loose. Doctors would tell me I just needed to exercise more, but the exercise would inevitably result in a joint subluxation. I had fasciculations, numbness, tingling, shooting pain for no reason. My gums are inflamed. Periods of dizziness, shortness of breath…then resolves spontaneously. There’s more, but you get the gist. I had a complete workup by my doctors,with no exciting results. I went to two rheumatologists, hoping they could piece together the puzzle. There had to be some underlying condition to unify some of these symptoms. One was downright rude, basically saying I was on a wild goose chase, wasting our time. Another, in Boston, said I should go to therapy. He thought it was psychosomatic. I finally gave up. I was tired of being looked at like a faker. I knew whatever it was wasn’t going to kill me, so I decided to just live with the pain and keep my mouth shut. I stopped telling my doctor my symptoms.

        Still, I kept researching. I just knew there was something causing all of this. After a good year of looking online, I found an article that could have been written about me. Mast Cell Activation Syndrome. It explained all the allergies, flushing, heart arrythmia, nighttime adrenaline rush. I wrote to the author, who is the “father of mast cell disease” and he wrote back, agreeing that I was exhibiting symptoms. His letter got me into the exclusive mastocytocis clinic at Brigham and Women’s in Boston. I’m now on the right medications and my symptoms have improved a lot. No cure, but validation.

        However, this still did not address the pain/joint/muscle issues. Upon further investigation, I found that the mast cell disorder is commonly codiagnosed with Ehler’s-Danlos syndrome, a genetic connective tissue disorder. I made myself an appointment with a geneticist in Boston who specializes in it, and sure enough…I have that, too. No cure, but validation is priceless.

        Like

      • OMG!!! I contacted that doctor about Mast Cell activation because my doc here thought I had it but I can’t travel. The doc sent me a few emails and said based on my symptoms was certain that i was something that I had. But still not received a real diagnosis, just multiple chemical sensitivities which is basicallly the same symptoms!!
        So we took my daughter to the doctor and one of the reasons was to get her evaluated for ElhersDanlos as a possible cause for her POTS but we FORGOT!!!! Because the doc immedately diagnosed her with bartonella and then everything else went out the window. She is doing a 4 time a day saliva cortisol test and a urine heavy metal test for her to rule out other things….I have to go back and reread what you wrote and comment more!

        Like

      • I REALLY REALLY want you be tested for lyme disease through igenix!!! Bad!! You have so many symptoms as I do it is downright crazy. Our lives are so freaking similar holy shit!!!! The paint fumes and chemicals and your heart and muscle pain. Same. Totally same. Blown off my entire life until this one doctor finally sent me to mayo clinic for the biopsy to diagnose the muscle disease. Have you had a biopsy of your muscle? And also she tested me for lyme through igenix and that was positive. Finally a good doctor. She tested for all kinds of mutations too like MTHFR if you havent had that it will help you alot because it shows which meds you cannot process and how your body detoxes.
        We have been through too much. I am so sorry you have had the same health journey I have. No one understands. Truly no one gets it, they seem annoyed and frustrated with my rashes and wheezing when I get around colognes and chemicals and you throw PTSD on top of that from the sexual trauma and it is as if they think I am just a mess. But I am not really if I just had more compassionate understanding people then it would make these symptoms more manageable but to be seen as a burden or to have someone frustrated with me it makes everything worse.
        Ugh. You do get it and understand because you’ve been through it.
        Now i have seizures and trigeminal neuralgia because of face and neck pain.
        Ok. Thinking of you!!!!

        Like

      • Hey! Sorry I’m just getting to reading my blog now…busy week. Anyway, I’ve been tested for Lyme, not the way you say to, though. I’ve found great improvement in my symptoms after being treated by an actual mast cell doctor, as well as the geneticist who diagnosed my Ehlers Danlos. Not cured, by any means, but better. I think it might be a lifetime of tweaking meds/treatments to keep it bearable. I’m just happy to finally have validation. Being looked at like a faker was worse than the symptoms themselves. You’re right…having chronic illness is enough to deal with, without adding PTSD and sexual/physical/emotional abuse to the mix…but this is my life. And yours. I hope you feel comfort in knowing there really is someone out here who gets it:)

        Like

      • I am so glad you have good doctors that know how to treat you and you are doing better. Yep, we have a full plate, but we can understand each other. I’m really glad you got the diagnosises. It really is hard to tweak meds but sounds like you are on the right path

        Like

      • I feel like you should follow up on the MCAS, seeing how he said you seem to be on that path. It could change your world…

        Like

      • I have SO tried. I went to two seperate hematologist, well three. And my main doctor thought it was a possibility and sent me to an immunologist and she said that if my tryptase was normal then there is no way I can have it. My regular doctor says all of my symptoms seem to point in that direction. I know if I take an antihistamine before I go to bed everythign seems to be better. And when I spoke with the doc at the place you went to, he actually called me on the phone and said if I could fly there he believes he could diagnose me easily. But that isnt in the cards right now. So…..I have an appointment in 4 weeks with my primary care doctor. I will put this back on this list!

        Like

      • Tryptase levels are typically normal in mast cell activation syndrome, but most doctors don’t know that, because they only know about mastocytosis. It’s so frustrating. What state are you in?

        Like

      • I KNOW. That’s what the hematologist and immunologist kept saying. Mastocytosis and no one would listen to MCAD. I am in florida. I spoke to a doctor a number of months ago that I think was in pensacola that also thought i had it

        Like

      • I had my local hospital run a 24 hour urine for histamine and prostaglandins, and it came back negative. I KNOW it’s because they let it get warm. I brought it into the lab in a cooler and saw them set it on the counter. I told them “It has to stay chilled” and they just nodded and moved on to someone else. I had the same test run at Brigham and Women’s in Boston (at the mastocytocis clinic) and it came back hugely positive for prostaglandins, giving me the mcas diagnosis. Just something to keep in mind, if your local test come back with nothing.

        Like

  1. I am in the same boat you are! I am trying to find doctors anywhere that will help me. I have Limb Girdle Muscular Dystrophy type 2J and I am on tons of medication to ease the symptoms, but none of them seem to work. I can’t get a doctor to help me with pain and I have pain 24/7 on top of mile long list of issues that come with my muscle disease. I found your post kind of out of nowhere and it was meant for me to find. I found your post inspirational!

    Liked by 1 person

    • I was JUST typing on your blog when you were typing on mine! If you search youtube for bethany kays central core disease, i made some videos. Maybe you’ll be able to relate to them. It is hard to find someone that relates to all of the symptoms. Living in chronic pain, etc.

      Liked by 1 person

    • The only medicine that ever helped was darvocet but they took it off the market. Valium helps some with spasms but then causes weakness. But i cant sleep or get comfortable because of the pain. It is such a frustrating cycle. NO doctor has been able to help me with my symptoms. None. So frustrating so I hear you on everything you wrote.

      Like

      • Hydrocodone helps take the edge off, but I basically have to cry to get my neurologist to give me a few. I’m with you, I can’t sleep because of the pain and lack of sleep and constant pain makes it easy to fall into depression. I wish doctors would wake up and do as much research on muscle disease as we do. We are our only advocates!

        Liked by 1 person

      • It’s true. We are! If I would have listened to the mayo clinic who said , sorry no treatment not cure…then I would have no answers or understanding. I had to reach out to doctors in england, canada, the NIH to finally get an understanding of what I had and what that meant for me. It is so hard being your own advocate when you are already tired and hurting. Isn’t it THEIR job to try!!!!

        Liked by 1 person

      • Not right now. i was in a few for 10 years but then I left them all and deactivated my account.just signed back on. I was so overwhelmed with researching myself and asking questions i just needed a break from it all. I was in lyme disease groups and POTS groups and muscle disease and central core disease. And MTHFR mutation groups. Oh my gosh I got fried. So I need to pick a few to go back in to now that I am on facebook again.
        Do you have any you suggest?

        Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s