It's frustrating when you think you are health conscious and yet a major health issue afflicts you. This is what happened to me and was a wake up call. Maybe I lead a fairly healthy lifestyle, but there are a few components that I was missing, and they are very key components; stress and not enough sleep. When these two things are existing, especially simultaneously, it outweighs all the other healthy things a person might be doing in their lives. Eventually the body has to show you that it means business and you need to get your shit together....or it will show you and do it for you.
I'm writing about this because I love to write and it serves as a catharsis for what I've been through. Very few people read this blog anymore, and I'm okay with that and rather prefer it, because then I feel more comfortable using this as more of a blog/personal journal. I'm also writing this in hope that if anyone else has this bizarre diagnosis called Vocal Cord Dysfunction, that they can read this and even if I can provide some guidance and support, I would love to do that, because I was lucky enough to have it and it made all the difference.
It all started in March when I had a very bad cold, virus, I'm not sure exactly what it was. It knocked me down for weeks and I rarely get that sick, or sick at all actually. I suppose you are supposed to go to the doctor if you have a sore throat that lasts more than a week, but I've always been a hard ass and always think I can get through things on my own and be fine...I've now learned this is an attitude that needs to change. During the course of being sick, I noticed that I couldn't swallow properly. Having such a bad sore throat, that made sense to me. I assumed it was related to that and would go away when the illness went away. It was difficult to eat and drink, however. Finally, one evening I was trying to drink something and choked, or maybe didn't choke, I'm not sure, but my throat closed and I couldn't breathe for well over a minute...it felt like an eternity and I seriously thought I was going to die. I almost passed out, but luckily did not. After that, my lungs hurt, my body ached, my chest hurt...my whole body hurt. It took me a full day just to recover from that episode, and on top of it of course, I was feeling drained and fighting an illness anyway. I took a sick day from work, which I don't know that I have ever done, or at least not in years...another behavior I need to change...
Soon enough I started feeling better and getting over the cold or virus from hell and everything was back to normal, or so I thought. However, that difficulty swallowing never really went away. It was not consistent, but it would rear its ugly head every now and then. I didn't really worry or even really know what was happening and it was so intermittent and of short duration that I didn't really worry about it. But it got worse...and finally in one week I had six more full closures of my airway while trying to drink something...just like the very first time when I quit breathing for a minute or longer. After the second one, I was searching all over the Internet trying to figure out what was happening because it literally feels like you are going to die...and feels like there is nothing you can do to breathe again. The more you try to breathe, the more closed off your airway gets. And of course, the more anxious you get, the more everything tenses and closes as well. I was desperate to figure out what was going on and came across a wonderful site by a woman named Carol Sidofsky:
http://cantbreathesuspectvcd.com. As soon as I read it, I knew that's what I was experiencing. I read and searched and read and searched for hours upon hours and days upon days. I had already seen the doctor and had to wait several weeks to see a specialist. I finally got in and had a scope put down my nose and throat and was given the diagnosis of VCD. But at this point, I hadn't been able to eat or drink for days. I could not swallow and oftentimes when I did, my airway closed off and I could no longer breathe. At this point I was terrified and felt hopeless, I couldn't do two of the things that are vital to survival. I devised ways of getting fluid down, but it was very difficult and I had to focus on it all day and still couldn't drink enough to stay hydrated. It was the worst experience of my life. On top of that, because of the sensation of the throat closing and fluid going down the wrong pipe, it created extreme anxiety...drinking something caused me the inability to breathe, so my body tensed up even more from the thought of drinking something...and then I had to battle getting through the anxiety long enough to even take one drink. At one point, looking at a glass or tea cup caused a rush of anxiety through my body...it was awful. I had two choices, give up (which I seriously contemplated a few times) or fight one hell of a battle to get myself back to health and swallowing normally again. I'm still not there, but much further along then I was.
Several doctors told me they do not know what causes this, but there are many ideas about what does, some of the common ones being digestive issues, including silent GERD that a person is not even aware of, illnesses that impact your nerves, upper respiratory infections, stress, food sensitivities, allergies, sinus issues, postnasal drip, muscle tension...things of that sort. I also read an article that said in an experiment something like 90% of the people studied had insomnia. Wallah! I hadn't been sleeping more than 5 hours a night for probably six months. And prior to that, I probably got 8 hours of sleep twice a week if I was lucky...I've functioned that way my whole life. Not because I have insomnia and can't sleep, but because I'm trying to constantly do more than there is time for and my attitude was "who needs sleep, there is plenty of time for that when I'm dead." Another attitude and behavior my body has forced me to change...
I dealt with stress and anxiety in the past when going to school and working and never sleeping enough. I had to learn to deal with it then and did rather well for years, but was still always doing too much, not sleeping enough and not dealing with emotions and energies properly...I tended to keep them inside rather then releasing them appropriately. After years and years and years of functioning this way, I think it all just finally caught up with me. When I look at the list of VCD triggers, I probably have almost all of them...I had a respiratory infection, I'm pretty sure it may have effected my nerves, because I had other weird nerve sensations going along with the illness I had...I really should have went to the doctor. I have had a lot of built up stress and lack of sleep over time, especially lack of sleep consistently during the months leading up to all of this. Sometimes I would sleep 3 or 4 hours. I'm sure this is why I was sick and couldn't adequately fight off what was overtaking my body. I have had digestive issues in the past, so perhaps that had something to do with it also. I was forced to look at every minute detail of my life...and I discovered a lot of things that needed improved upon, even though I thought I was doing rather well.
The doctors said for whatever reason, my brain and nerves had rewired themselves to function wrong. My job was to rewire them back to normal, which would be extremely challenging and take a very long time. At times, I felt like someone learning how to walk again, or someone who had gone through a stroke and having to learn to do something so simple and automatic as swallow. I was told those who are not sharp and in good health, often cannot do it. That was real reassuring (sarcasm). My theory is that perhaps I did choke that day while drinking something. The vocal cords really only should close completely if you are drowning. They should only close off in an emergency situation. They are open when you are breathing. If they close off too tightly, you can't breathe at all...but it seems that with VCD, most of the time people are still able to get enough air that they do not pass out, although some do. It is absolutely terrifying, but the key is to keep calm, relax, breath slowly and differently and that is how to stop it, counterintuitive to what you body wants to automatically do, which is freak out and tense up. I literally feel like I've been fighting a battle against my own body.
My body and mind and everything about me has always been hypersensitive. I think my body was trying to protect the airway, as it should...it is a survival mechanism...I wasn't able to swallow properly that one time and so it closed everything off to protect the airway..it's a good thing when you view it that way. But then my body decided to keep doing it as if every time there was liquid in my mouth, I was drowning and it need to close my airway, tightly. I can feel that my nerves are not functioning properly...they don't know what to do anymore...everything is off and rewired wrong. It no longer knows how to swallow, especially thin liquids and especially water. It moves so much and so quickly, it throws the nerves off. My throat began tightening up so much that I couldn't even swallow my own saliva without gagging and feeling a choking sensation. I seriously felt like I was living through hell.
I had to assume warrior mode though, or there was no way out. Physically, emotionally, psychologically and spiritually, I had to be strong, even though I felt as weak as I ever had. The best place to start was spiritually, because it was just easiest, it wasn't directly suffering from dehydration like my body was...I could adjust my spirituality easiest and others helped with prayer. I never prayed so hard in my life. I had some very strong spiritual people on my team and I had people praying all over for me and I honestly believe it helped tremendously and that is where I had to start. By upholding faith and determination to get better and asking Great Spirit for help, I was then able to move on to my emotional and psychological selves....that were suffering quite a bit. I was pissed, I was confused, I was frustrated and I was fighting immense anxiety and stress, and also fighting the medical system. All of this was exacerbating everything. I have never felt so much adrenalin run through my body...it left me exhausted and tense and I had to get that under control, so the rest of my body could relax. At times my throat was so tense, it felt like I had lifted weights with it for a week straight. It hurt, no wonder I could not swallow...there was simply too much resistance. I finally got the other aspects of myself under control, but it was not easy...I really had no other choice though, I had to. I still struggle sometimes, but it is better. When I have a day that I can't swallow well, I automatically get pissed off and frustrated and start to feel hopeless again...I can't let myself do that, or I will never win. Faith, determination, positive attitude and hopefulness is an absolute must. It is not an option. When I fall off with my attitude, everything else starts spiraling negatively again...including my throat...
In addition to all of this, I had to fight with my doctors and insurance company several times. Wait times are horrendous to see any specialist. I waited far too long and could have been working back towards health long before I was. People with this dysfunction need help right away...waiting for weeks to see each specialist is not acceptable and is detrimental to the patient's health, but that is the last thing of concern in the medical system. After being diagnosed finally, I was told it would be another one to two weeks before I could see a specialized to treat the issue. At this time I was not able to eat or drink and my anxiety was out the ceiling. I told myself that at least now I knew what was wrong and would do my own research and work to curb my stress, but I tried that for a few days and it just didn't work. I finally had to call my doctor and demand her to get me in to see someone...why the fuck was I waiting anyway...7-10 days for a damn referral...I called and told them I would do it myself...whatever it was that was taking 7-10 days...I was about to be hospitalized for dehydration. I told several doctors that I could not drink fluids, and no one seemed to think that was cause for concern. What?! I asked one doctor what I could do to drink...she said I would have to ask a different specialist and then proceeded to tell me not to call back and wait 7-10 days for a call for a referral. After calling and bitching them out and pleading for them to get me in somewhere, they magically had an appointment for me within the hour. No one should have to do that shit when you are sick.
After working with a pathologist and doing a simple breathing and throat relaxation exercise for two weeks, I'm able to eat and sometimes drink again. After the second time seeing her and being given a list of exercise to do to get rid of tension in the throat area and larynx, things continue to improve. It's a complete work out for a very small portion of the body, it's crazy, but the results are amazing. Apparently, it takes on average at least 3 session with her for significant improvement...I have three more weeks and then I will go to my third session. It is draining, it is difficult and having to think about every swallow you take is exhausting. I want nothing than to be back to normal. But the doctors were right, it is extremely difficult, takes a very long time and massive amounts of persistence and determination. If I start to feel better and slack on the exercise, my body shows me who is boss. Some days are just bad and some days are good. I'm trying to find correlations. I want nothing more than to get through this as quick as possible, but I have to go at my body's pace. I have to sleep more, eat as healthy as possible and adjust my whole life. Everything is different and I am forever changed.
Somehow I have kept my humor, at least most of the time. It has been a life saver. I have had support and encouragement from friends and family. In the long run, I have to assume this all happened for a reason. I will certainly come out of this stronger, I have no other choice or option. And it will strengthen me on every level of my existence, because it has challenged me on every level. Sunsets are brighter and more beautiful, everything is amplified and thus I have to focus on the beautiful, calming, peaceful things in life and those things that make me happy. I can no longer stress out about things that used to bother me. I'm just thankful I am still here and suffered minimally through this...it could have been far, far worse. I'm grateful to those who suffered before me and led the way for doctors to learn more about it and learn how to treat it. There is no medication, it's all behavioral.
I've learned that the inner landscape and attitude is extremely important to one's physical health. I already knew this, but sometimes we just have to be thrown a challenge in order to really wake up and embrace that and live it. I had to be a warrior - I felt sorry for myself at times, I felt hopeless at times and truly contemplated what it would be like to give up, because it seemed easier...at the time I felt that way, but seeing how far I have gotten now, I look back and think how foolish those thoughts were. I couldn't hold those types of thoughts long and did not, because I knew they would be self-defeating. So instead, I had to take on the personality and perspective of a warrior. I had to tell myself boldly to keep moving forward and with the stance of a fighter (even though I was drained in every way), because anything less would not have gotten me through. I had to hold strong and clear intentions, strong and clear focus and a driving energy to keep me moving forward and not back...because one step back meant two steps forward.
We all suffer through strange illness or dis-eases at some point or another...and one thing that has also been both interesting and comforting is having friends and family open up about strange or challenging issues they have had. There is something in human nature that causes us to avoid admitting when we are ill or when something is wrong and we are not functioning well. I have many theories about that, but that's another post and this one is already novelette size, so I won't go there.
I'm thankful beyond measure to all those who prayed for me and my friends and family who were there for me. I had to spend a lot of time alone, just being completely focused on what I needed to do, but the support and encouragement and words of wisdom I received were immeasurable. And my little dog soul, who was with me through it all and whose eyes showed worry and anxiety when I had attacks, just like a human would and who started sleeping a little closer to me each night and everywhere I went.
I am happy to say that I have not had a full closure/attack for over two weeks. It is a slow and difficult challenge, but I was given it and have no other choice but to get through it. I will do whatever it takes and have always been a firm believer in mind over matter. The mind can certainly make yourself sick, but it can also heal you. When I get frustrated, or things seem to regress, I have to look back at where I was three weeks ago, hell even three months ago, and be thankful for where I am now. Perhaps this is what was needed to get myself back on track in life and leading an even healthier life style than what I was before. I'm quite sure the timing is just right and it happened at this exact moment in my life for a reason. I'd certainly rather deal with it now when I am young and healthy, than 20 or more years from now. And perhaps there is something about it all that will change the course of my life in some way, in fact I'm quite sure of it. In the end, I can already tell that I will be doing much better when I get through this...and I said "when" not "if."
