What are you looking at?

Ever since I was 9-years-old, I have had problems with my sinuses. In fact, it was at that age that I first saw an Ear, Nose and Throat (ENT) specialist and was diagnosed with chronic sinusitis.

This was also my first experience with the nose camera. A foot long camera that is stuck deep inside your nasal passages, with the entire display of the interior of your nose projected onto a screen. It is very uncomfortable. However, I learned that this is how my ENT could understand what was happening to my sinuses.

My first sinus surgery was when I was 10. After a year of CT scans and repeated discomfort caused by sinus infections and nose camera probes, antibiotics that had grown to such strong strains that side effects read “can cause internal bleeding and tear stomach lining, my ENT said surgery was the only logical next step. I first had my adenoids removed and then had a nasal endoscopy a year later.

Following that would be two more nasal endoscopes that occurred by the time I was 12.

I then moved from Maryland to Arizona, did not have a pet and things started to clear up. Over the past 14 years though, I have had several sinus infections, have been on multiple antibiotics and allergy medication. I have been told by my doctors that allergies and sinusitis are very closely linked.

About a two years ago, things changed. Three years ago I rescued a Chihuahua, who I adore greatly. He is a short hair, who ironically enough sheds everywhere. I am allergic to dogs, but adore them, and really, all animals. So I guess I had this coming. Progressively, my allergies got worse, I started to get sinus infections, but developed something new: fairly moderate asthma. This became a very uncomfortable triple threat health condition.

My primary care doctor sent me to an ENT. At my first appointment, something familiar: a tube up my nose. Even though I am use to it, I must stress again how uncomfortable a foot long camera stuck up your nose feels. It doesn’t just remain there. No. My ENT has to move it and scan multiple areas, and the light is hot. As he is doing this, he reports his findings.

Imagine someone staring inside your nose and holding a conversation with you. Awkward much? There is no projector this time. Technology has improved.The camera has a lens on the end of it, where the doctor can get a very intimate look inside. He said that scar tissue from my previous surgeries was causing narrowing in my nasal passages, I have a deviated septum and my sinuses are completely clogged and swollen. He ordered a CT scan, which confirmed what he saw by sticking the camera up my nose. He ordered surgery. My FIFTH sinus surgery in 26 years of life. It is scheduled for this coming July.

A lot has changed with regard to technology in the ENT field since my last sinus surgery. I am hopeful that with this coming operation that I will be able to breath a lot better, have fewer asthma/coughing attacks caused by post nasal drip, very few sinus infections and over all feel better. After all, that is what my out-of-pocket costs and monthly health insurance premium are paying for right?

Until next time,

Sam

When What You See, Isn’t What you Want

Modern society places a great deal of importance on outer appearance. Women are held to especially high standards in this regard. Whether its beauty, fashion or the latest Red Bottom shoe. However there is something else that is given much more attention: weight. Each year it seems women need to be thinner, and that a svelte and thin physique equates to a beautiful woman. I will admit, I am under that spell.

Ever since I was little, I was told and believed that if my body wasn’t perfect, meaning thin with the right amount of curves and muscle tone, that I was a horrid looking creature. What’s kept this construct alive are the health problems I continue to battle.

I am a vegan. Not the pasta, carb kind of vegan. But the organic, NON-GMO, fruits and vegetables kind of vegan. I don’t eat past 7 p.m. and overall my diet is extremely healthy. It has been for a long time. I also used to kill myself at the gym and work with a personal trainer. However instead of any pounds coming off, they kept mounting. How does that even happen? Now that I have Fibromyalgia, it’s harder to be active. However I still try to be as active as I can be. If that isn’t discouraging and doesn’t make you want to run for the doughnut shop, nothing will.

However, I never ran or run there. I have asked my doctors what the problem is and why it is impossible for me to lose weight. Their reply: It’s the PCOS, it’s the Cushing’s Disease, it’s all of the medication you take, it’s the sleep apnea, I am not sure we probably need to run more tests.

It’s extremely disconcerting to know that there’s NOTHING I can do to make the pounds shed off, even though I am doing all of the right things. My endocrinologist recently said that I may have a shot if I work out intensely six days a week for an hour each day. Seriously? So I am supposed to run down an already sick body that eats a plant based diet. Yes. It’s the only option I have.

What makes me cry is that all it takes most people is eating a well balanced diet and working out moderately each week to maintain a nice figure. However for me to even have a prayer, not a guarantee, but just a shot, I have to give up any type of cheat food, work out my body like I’m training for a marathon, and still suffer with illnesses. All for a gamble that I might still not like what I see in the mirror staring back at me.

But life is not fair. I have learned that a number of different ways. What’s really upsetting to me is that people judge you on your appearance. When people see me I bet they’re thinking, “there’s a girl who loves cake.” Actually no. I don’t eat cake. I am a vegan and am very healthy and look like this because my body is combating several serious illnesses. Also, when you weigh more than you should, that puts you at risk for other serious health conditions such as: diabetes, high blood pressure, heart disease and high cholesterol.

I don’t live a lifestyle that would warrant such conditions. All I can do at this point is follow my doctor’s recommendations, and take it one day at a time. However discouraging each day may be, I hope there comes a point where I can look in the mirror, and like what I see.

Until next time,

Sam

When Having Sleep Apnea Becomes Deadly

I don’t remember a time when I have woken up and stretched my limbs and said to myself, “What a great night’s sleep. I feel so refreshed and energized for the day ahead.” Nope. Those words have never left my mouth. It’s possible that when I was younger that I slept better, but I don’t remember those days. I started to notice a serious problem with my sleep seven years ago. I suffered from insomnia, nightmares and an inability to have any sort of restful sleep. I continued to wake up feeling extremely tired and never felt refreshed or energized. I was extremely tired throughout the day and irritable. All I wanted to do was sleep and my body/mind just wouldn’t allow that to happen. I wanted to take naps at work and at home. I just wanted any chance to try and get some sleep.

I started to share my symptoms with my primary care doctor, in the hope that she could help. However, she felt that the problem was psychological, primarily because of the nightmares. I continued to go through this battle between my doctors and psychiatrists over medications for sleep and working out issues that may be causing the nightmares, over a five to six year period. I was also subjected to numerous sleep studies. Now let me comment, briefly, on sleep studies. In theory, sleep studies are a great tool to uncover a person’s sleep problems. However, if you have Obsessive Compulsive Disorder (OCD) and anxiety like I do, they are horrifying. Let me explain.

You are sent to a sleep center in some shopping center or medical complex. Hmmm how secure is that? Your brain is connected to numerous wires via a paste so that your brain waves can be monitored. This is very uncomfortable. Not only are these wires attached to your brain, but all over your face, legs, arms and chest. Next, a plastic tubing is stuck inside your nostrils. This is apparently supposed to resemble sleep that is comparable to your normal sleep environment. Really? I am unsure how this is so. Lastly, you are to sleep in a bed where who knows if the sheets are clean and a camera is staring right at you, watching your every move. Oh and remember when I mentioned that I can’t sleep without my husband? Well he wasn’t allowed to stay. So I am alone and uncomfortable, with people staring at me. Sure, this is exactly like home.

Needless to say, these studies were not successful. About two years ago, I finally found a doctor who listened and made me feel comfortable. He performed sleep studies in his immaculate office complex and my husband could stay with me. I made it through the study! The results showed that I had a variety of sleep disorders. Fairly severe sleep apnea was among them. He recommended that I start CPAP therapy right away. I did just that. At first, it seemed to be helpful. Well, just as luck would have it, my asthma started to progress at around that time. The CPAP machine aggravated my lungs. After about 20 minutes of using the machine, I would get severe asthma attacks and need my rescue inhalers. I had to stop the CPAP therapy.

The only other treatment for sleep apnea is an oral appliance, which my insurance does not cover and is very expensive. I am trying to figure out a way to see if my doctor can work with my insurance to show that CPAP is not an option because of my asthma. But until then, my sleep apnea is not being treated. My husband has noticed that I stop breathing more and more at night. This is a very scary reality. But not as scary as what happened a few days ago.

My husband and I share a car right now, so I take him to work in the morning and then head to my job. Lately, I have been so tired. I am trying to go to bed earlier each night, but that doesn’t seem to help. The other day I began dozing off as I was headed to my job. I just couldn’t keep my eyes open. I tried everything I could to keep my peepers popped open wide, but nothing was working. I decided the best thing to do was to pull off to the side of the road. However the cars started to become very blurry on the freeway that I couldn’t make them out and each lane was packed so I couldn’t switch lanes. I started to panic. The next thing I knew, I was jolted awake and a man emerged from a vehicle in front of me. Apparently I FELL ASLEEP WHILE I WAS DRIVING AND CAUSED AN ACCIDENT. I fell asleep while I was driving. How does that even happen? I was in a state of total shock. The day before, I was dozing off as well and made my way into another person’s lane.

At this point driving scares me. It scares me a lot. I am not only a danger to myself, but to everyone else who is on the road. The reason? Extreme exhaustion from untreated sleep apnea. I was extremely lucky. I could have died. Or worse, I could have killed another human being. The lesson here is pretty clear: I need to find a way to get adequate rest, and get it quick. I need to find a way to treat my sleep apnea or it could mean my life. Until those things happen, I cannot get behind the wheel. I wouldn’t be a responsible individual if I did. If for any reason you feel overly tired, disoriented, or have blurry vision, don’t get behind the wheel. It could mean your life or the life of someone else.

Until next time,

Sam

Physical Health is Important; But Not Nearly as Important as Mental Health

If the term “mental health” is associated with a negative connotation for you, you aren’t alone. You are also not alone if the first thought that enters your mind when you hear that phrase is someone talking to animal crackers, crying to a psychologist while sitting on a couch or taking millions of pills a day in order to stay with the majority of us in reality. However, as I have struggled with my own mental health issues over the years, I have realized there is a lot that people do not know about the many facets of mental health, things I still don’t know and struggle to accept and stereotypes I had to overcome in order to first seek treatment.

I had a very dysfunctional, unhealthy and simply awful childhood. As a result, I have been diagnosed with Post Traumatic Stress Disorder (PTSD). I suffer from nightmares and very upsetting and bizarre dreams. I also have difficulty trusting others and their intentions and as a result, struggle to maintain numerous friendships.

I have also been diagnosed with anxiety. I suffered from panic attacks as a child and continue to do so, however less frequently now. My anxiety manifests as racing thoughts, insecurity, paranoia, extreme worry and fear. I can not take a shower or sleep at my house unless my husband is home.

I have thirdly been diagnosed with a bi-polar depression. I have fits of rage, mood swings and periods of moderate to severe depression. However, everything that has been described is controlled through the use of medication. There is one extremely serious contingency though: I need to remember to take it and make it a priority to fill the prescriptions at the pharmacy.

Recently I had a fairly severe episode of withdraw from not taking my medication that controls for the bi-polar depression that I suffer from. I had forgotten (remember the fog brain?) to take it for a couple days, and then made other things a priority instead and didn’t have the funds to pay for the medication once I realized I had run out. I soon realized I was in for some trouble. This is not the first time this has happened with this particular medication. I always begin to get lightheaded and have dizzy spells a few days after I haven’t taken my prescription. That then leads to depression, then rage and then something that will trigger days of a complete meltdown. I am no longer the same person once I hit meltdown mode and there is no reasoning with me. I become someone who thinks that everyone is out to get me and/or try to hurt me and feels as though others don’t understand what I am trying to explain. I am also very unreasonable.

Just to be clear, I take medication for all the above related conditions, and there are consequences for forgetting to take any of them. What is ironic is that when I was first diagnosed with these conditions, I was dead set against taking any medication. I didn’t want to be that person who let a mental illness define you by taking medication. I soon realized that the exact opposite is true. A mental illness defines you if you don’t reign it in, understand it, control it and manage it. Be it through medication or whatever means makes sense for you. In my case taking medication prevents my conditions from defining me and taking over my life. So often I become wrapped up in my physical ailments and the latest medical mystery, that I forget that my mental health is just as important, maybe more so.

I spent a long time feeling too embarrassed to admit that I needed help and being open to different treatment options. If you can relate to this, don’t let this happen to you. Make your mental health a priority so your illness doesn’t take over your life and become the only thing people can define you as.

Until next time,

Sam

A Headache a Day Keeps the Doctor at Play

Within the last four months, I have experienced a new kind of pain. It’s not from the Fibromyalgia I have. No, that feels like someone is taking an ice pick to my legs, over and over again. As unpleasant as that is, which is EXTREMELY unpleasant, this some how is worse. Worse than ice picks you might ask? Yes.

I have had headaches for the majority of my existence. They have usually stemmed from the fact that I have had chronic allergies since I was four and chronic sinusitis since I was six. I have had four sinus surgeries over the course of my 26 years on this earth. When these new headaches started four months ago, I naturally assumed it was my sinuses causing the pain: I was partly correct.

My Ear, Nose and Throat specialist (ENT) ordered a CT scan to see what was going on. By this time however, the pain in my head had changed and the frequency of my headaches had increased. Every time I had a headache, it felt like a semi-truck had ran over my head and this was occurring about twice a week. When the results of my CT scan came back, my ENT said that my sinuses were completely blocked and that my sinus passages were narrowing and that another surgery was necessary. However, the disappointing news was that my ENT felt that my headaches could not be 100% attributed to my sinuses, and that surgery could make my headaches worse. The headache problem had to be solved before surgery. So he referred my to a neurologist.

In between that time my headaches got worse. I was having headaches 3-4 times a week and not only was the pain as if my head had been run over by a semi, but then run over again by that same semi with some personal vendetta against me. The most frustrating part? Needing to see another specialist. That means more time waiting for relief and answers.

Upon seeing the neurologist, she ordered an MRI, started me on a medication routine and referred me to ANOTHER specialist because she couldn’t see back into my left eye, indicating a pseudotumor. I see this specialist tomorrow. Then I can finally see her again to know what is causing these headaches. This is of course assuming that the MRI and the work-up done by the ophthalmologist are conclusive in some way. In the mean time, the medication has been partly helpful, and partly not.

It’s really irritating that in today’s healthcare system that it takes this many steps to find a solution. In my case, while I am waiting months for that solution, I am in agony and relying on doctors to find out what’s wrong and to take care of me. My health and well-being is really in their hands, and I am being passed through a lot of hands. I am depending on them. At the end of the day, what other choice do I have?

Until next time,

Sam

Acid Anyone?

About two years ago I had the worst stomach pain I had ever experienced in my life. My stomach expanded like a hot air balloon, and I had a permanent seat on the toilet for a couple of weeks. I saw my primary care doctor who prescribed Pepcid, which didn’t help. She was concerned that my ever growing medicine bag was the problem. She said that the enormous amount of medications I was taking had been eating away at my stomach lining and the pain was my stomach rebelling. She suggested that I see a Gastroenterologist that she highly recommended. I made the appointment, however he couldn’t see me for two and a half months. Two and a half months. How disappointing. I wasn’t sure what I was supposed to do in the interim.The pain eventually became so bad that I had to go to the emergency room. It turned out that I had an ulcer. Well, the medications had done it. They had stripped the lining in my stomach. I was prescribed a stomach coating medicine, which helped immensely. That made living with the ulcer bearable until I could see the specialist.

Time finally came to see him and I had to undergo a procedure to treat the ulcer. He also discovered that Irritable Bowel Syndrome (IBS) was a culprit at work in my symptoms and suggested some lifestyle changes, which I made.

It has been two years since that diagnosis and my eating habits have not been the same since. I am a vegan and have been for 14 years. So there is already a lot that I don’t consume. However, ever since I had the ulcer, things keep falling off the list of things that I can eat. I can no longer look forward to a warm cup of coffee in the morning, a piece of chocolate, any type of spiced tea or spices in cooking. I can’t enjoy tomato sauce or a variety of fruits and vegetables. As a vegan, fruits and vegetables are an essential!

Another problem has arisen though. I believe it to be acid reflux. Every day, no matter what I eat, I am burping all the time. How disgusting is that?!?! As noted above, there is nothing in my diet such as soda or fried foods or spicy foods that should cause that, and everything else has been eliminated because of IBS! I am confused about the root cause of this problem and very uncomfortable. I wake up most morning’s with the feeling of fire burning down my esophagus and throat. Are my medications, assuming I remember to take them, causing the problem again? Has the IBS spiraled out of control? Is something else causing the acid reflux? I desperately want answers to these questions.

I made an appointment with my Gastroenterologist. Any guesses on how long it will be until I get to see him? If you guessed two months, you would be absolutely correct. I will never understand why it takes such a long time to see a specialist. On the one hand, that tells me that they are in high demand which is a good thing. That means they are a quality doctor. However on the other hand, it means patients like me have to wait months to get seen and treated, suffering in the interim. That’s NOT a good thing. Because there is one person in such high demand, I am unsure of what the solution might be, or if there is one at all. What I do know is that this is another uncomfortable problem to add to the ever growing list of medical problems that I have. I would also like to find some relief. I hope that is possible. Because I know that if acid reflux is left untreated, it can lead to throat cancer, and that is a scary possibility.

Until next time,

Sam

Living in a Fog

Picture opening your garage door, and backing down your driveway in your car, only to realize there is a thick white fog cast in the air. You turn on your headlights and try to see through the dense mist. However the fog doesn’t appear to be lifting, but rather appears to be be getting more dense. You feel confused and disoriented.

This is what its like living with my brain. I often forget appointments, names, things I am supposed to do, people I am supposed to call, when bills are due etc. Wait what was I just saying? Even if I have it written down, I usually don’t remember where I put that information. I also forget to take my medication. As someone who was always on the ball, ahead of the game and extremely organized, it is probably clear why this new fog like world is so disappointing. My doctors aren’t exactly sure which illness may be causing this. It could be the fibromyalgia, the pituitary tumor, the possible cushings disease, the sleep apnea, a secondary sleep disorder or something that has yet to be found. There is no better example to illustrate the consistent fog I live in than my experiences today.

I had to wake up at 6:30 this morning to take my husband to work. I was so exhausted per usual. I had an appointment at 10 this morning, so thought it best to stay up so I wouldn’t miss it. However I fell asleep. That is what normally occurs in these types of accounts isn’t it? Well low and behold, I missed my appointment, and it was a very important one. Lucky for me, they rescheduled for later this afternoon. I checked my phone and my husband had called me three times to wake me up. Apparently I even spoke to him! I don’t remember any of our conversation.

I head out on time, and am feeling good on my way to my appointment and even arrive early. Sitting in my car, I check to make sure have everything. This wouldn’t be a good account of someone who has a fog brain though if I had remembered everything. I realize I have left my portfolio at home. I buried my face in my hands. I can’tbelieve it. But thought that couldn’t be the worst thing. I was mistaken looked down and saw what the worst thing was. I never shaved my legs! All of the showers I had taken in the days prior and never took care of that basic hygiene practice? How embarrassing.

Its really discouraging that I can’t remember simple things anymore. Whatever is going on with my health is affecting every aspect of my life. I have weeks that go by where I forget every appointment that is scheduled that week. I hope my doctors’ figure out what is causing this before I forget my own name.

Until next time,

Fog-brained Sam