The last thing on your mind when you’re going through a battery of tests or waiting for a diagnosis is the notion of adding more to your plate. Why would anyone be crazy enough to stress themselves out more? But let’s face it, the truth is stepping up to the plate and making sure your best interests are at heart will save you stress in the long run. This post isn’t just for people like me, this post is for everyone out there trying to find their way through maintaining good health. And believe you me, my perception of the medical world has changed drastically…
Let’s take a walk through memory lane first so you know how I used to handle my health. At the sign of any illness I had a nip it in the bud mentality, meaning at the onset of feeling myself coming down with something I was right in my doctor’s office looking for an antibiotic to prevent the illness from getting worse. While this seemed to prevent extended absences from work I also failed to ever let my body build up it’s own immunity and I can now say for certain that I have built up an immunity to the Z-Pak. I didn’t ask questions and I never researched any other methods to help keep up my own health. After all, doctor’s go to school and do research for many years to become experts, so I trusted the system completely. This is in no way a stab against medical professionals, it’s the opposite. I believe in many medical professionals and know they are able to save my life but I just don’t believe it leaving things all to science. I believe in fighting health issues: mind, body, and soul with the support of your doctor to guide you a long the way.
Key things to think about (I’ll elaborate underneath)
- Metabolic blood panels done during annual routine physicals DO NOT check for anything and everything
- Listen to your body. If something doesn’t feel or seem right there might be something more to it
- If you aren’t clicking with your medical provider, seek another opinion. Having someone in your corner is essential to receiving the best care, and this is why I fired my Myeloma specialist
- DO YOUR RESEARCH!!! Would you buy a car without making sure it’s right for you? Even after you have a diagnosis and work out a plan with you doctor, why stop there? So many things I have learned, and benefited from are things that I found on my own. Just don’t go overboard, it’s easy to make yourself crazy.
- Ask questions! There are no dumb questions! This if your life we are talking about. Leaving out details could mean not choosing the treatment path that’s not right for you or worse could lead to misdiagnosis!
- Get a good support system – if you don’t have a group of friends and/or family near by there are resources out there to get the support that you need.
- If you are having trouble sleeping, losing weight, have low energy, etc. take a closer look at your diet rather that using quick fixes like prescription drugs or caffeine. You’d be surprised in the long term how much better you’ll feel.
- Attitude is everything
1 – Blood work
In the months leading up to my diagnosis I had my annual physical including a metabolic blood panel. The blood work came back great, and I was healthy according to my doctor. At the same time I had an unrelated health issue and the specialist I was seeing for this issue wanted to check to see if I was anemic. They did a complete blood cell count and found that while I wasn’t anemic, my white cell count was shockingly low. Further testing led to the discovery of an abnormal protein indicative of bone marrow issues. This prompted a bone marrow biopsy and initial diagnosis. Had I not had this other set of blood work done, I would be living life thinking nothing was wrong until things potentially worsened and became apparent (and in a later stage for treatment). My advice to anyone finding themselves to be more tired than normal or low energy, get your complete blood cell count checked. Maybe it’s nothing, but it could quite possibly save your life!
2 – Listening to your body
I can honestly say prior to my diagnosis, something just didn’t seem right. I really and truly felt like crap all of the time. I kept telling myself, something isn’t right, I need to start eating better and exercising. But I didn’t, like many of us I found excuses to keep on eating whatever I wanted and not exercising (the latter is still a struggle!). It’s now obvious that there was something going on that I was ignoring. Yes I finally got myself into the doctor to pursue the issue by why do so many of us wait so long to take charge of our health?
3 – Clicking with your doctor
I was diagnosed in Ithaca where there are no Myeloma specialists and where the ability to have a stem cell transplant is non existent. My closest options to meet stem cell transplant (SCT) specialists were either in Rochester (1.5 hours away) and Buffalo (2.5 hours away). Since Roswell Park in Buffalo is a Cancer Research Institute, I felt it was worth the drive to go there. Everyone in my online Myeloma group urged me to seek out a Myeloma specialist while I was there to meet with the SCT specialist. I was so pleased to be paired with a young Myeloma specialist, I thought: she must know all the lastest research! But what I was met with was not pleasant at all. This doctor was cold and treated me like a number. What I expected to hear was, “we are going to fight this with everything we’ve got, I’ve got your back”. Instead I was told things like, “well we are starting to see remission rates of 10 years rather than 5 years now”, and “no matter what we do, it will come back eventually”. Now I am not living in la la land. I know there is no cure for Myeloma but how is one supposed to keep a positive attitude when the doctor’s attitude was so cut and dry? I also mentioned to this doctor that J and I had made dietary changes (something I was quite proud of) and were sticking to an all organic, sugar free diet, and mentioned the supplements I was taking that I found to be beneficial for Myeloma. Her response was that while it’s good to eat healthy that there is no correlation between diet and Myeloma according to research and that she didn’t want me taking any supplements! What’s scary to me is how many other doctors say the same thing? I see people in my online group giving advice to eat whatever you want and enjoy what’s left in life. No, no! At any rate this was the point that I fired my Myeloma specialist. I am happy to say I will never step foot in her cold, unwelcoming door. I’m not one of her 50-70 year old patients where 10 more years is promising. That’s not good enough. I left her office convinced I wouldn’t be among the living in 5-10 years and more depressed that when I was diagnosed. It took me weeks to shake it off. But at least now I don’t have to worry about having a cry about the state of my health and have her stare at me blankly like I’m a crazy person. I’m considering meeting a specialist in the city but since I am in the monitoring phase, there doesn’t seem to be as much of a push at the moment. In whatever medical situation you have make sure you are being treated by someone you trust, it’s half of the battle really.
4 – Doing your research
It’s sad to say that if you want to look into natural options for care to go along with the medical side you are kind of on your own. Yes there are places that can help but they often are pricey, not covered by insurance, and it’s hard to tell if it will be the right fit for you. I am lucky enough to have an amazing massage therapist who it certified in Chinese medicine who put me on the right track to a few things such as the benefits of turmeric (if you suffer from pain, fibromyalgia, inflammation, you might want to look into this). My first few weeks into diagnosis I was not in a good place, I didn’t know what to do or where to turn and was completely stressed out. Yes the countless hours I spent researching natural remedies that could help me took a toll on me, but I knew I needed to do it. I watched what chemo did to my mom the last year she was here and I was determined to do what I could to prevent myself from getting to that state if possible. It was worth a try anyway. I knew that I was in charge of my health and I needed to stay on top of it. There’s a lot of information out there. Some good, some quacky, and some things that flat out could make things worse, all of which could leave you penniless unless insurance starts to cover these things! So tread lightly and if you need some tips feel free to ask me. I’m practically a walking encyclopedia on this stuff now, or as my brother likes to say, “your’re turning into a crunchy hippy, I love it”. I Never thought that day would come but as I sit here typing this wearing my aluminum free deodorant and natural beauty products, there’s not much denying it. But you can hardly tell through my Anthropolgie attire 😉
5 – Ask questions
Most of my doctors’ offices have signs posted urging the patients to ask questions, hopefully yours do too! Regardless, make sure that you are asking questions concerning your health. Jot some things down ahead of your appointments so that you don’t forget to ask the things you are thinking of. So many of us leave it up to the doctor to ask us pertinent questions but they don’t know what’s going on or how we are feeling unless we tell them. For example, every time I see my oncologist I tell him about my lower back pain because I know that when Myeloma gets into the bones, it often picks the lower back first and it’s victims end up with broken vertebrae. I’ve had MRI’s and multiple X-rays that have shown no lesions so it appears I don’t need to worry just yet. But I know it’s important that my doctor knows this, even if I told him at the last appointment. There were also levels people talked about in my Myeloma group like M spike. I have never heard my doctor say some of this terminology so the next appointment I asked him what my M spike was. Knowledge is power and it pays to make sure that you have as much of it as you need!
6 – Support system
Support systems are key to any problem you face in life: breakups, loss, death, illnesses. If you are going through a tough time make sure that you have someone to turn to, no one should have the face the bumps in life alone. Even if you don’t have someone close by there are groups for virtually everything. After my mother’s passing I forced myself to go to a weekly support group for young adults that were grieving. It was tough, there were times I didn’t want to go but part of the requirement was being there each week. Each time I went I was so glad I did after. I’m blessed to have an amazing support group of family, friends, and coworkers both near and far. It honestly changed my whole perception on this diagnosis. I went from being bitter, depressed, and making ill timed jokes to J about when I am gone and he’ll still be here, to wanting to fight this head on with everything I had. J and all of the other amazing people around me gave me that power and determination. Sometimes even with the best of people around you, you need a little something else. For me, I will be attending my first young people with cancer support group next Tuesday. I love the people in my life but I’ve come to realize after my retreat in NJ how much comfort you find in others that are going through a similar thing. People who understand the ups and downs or the bitterness I fight off of not getting to live my life like the amazing people around me. Most of all, don’t be afraid to ask for help. The biggest challenge is walking through the door of a support group, or one on one counseling session. But what’s the harm in going? Nothing. And if it helps, well you’ll be so glad you did it.
7 – Diet versus prescription drugs
Ok so if I talked to myself 5 years ok that self would be in disbelief of my lifestyle changes and would probably think it’s pretty wacky. Am I bitter when you go to grab that yummy looking desert or tasty adult beverage that I can’t have? Yes, but do I judge you for indulging? No, because I was right there a year ago. In all honesty, I, like the majority of others don’t feel compelled to make lifestyle or diet changes until there is a problem. But how many people could prevent said problem if they were a bit more mindful about what they put in their bodies? We live in a pill happy society. Yes there are children and adults alike who are able to survive because of medication, but there are also a lot of quick fix prescription writing going on too. I am one such example, every time I go to the doctor she asks how I’m doing mentally with everything going on. She generally extends an offer for something to help me sleep or cope. I tried that after my mom and the end result? I was an even bigger mess! I felt nothing, I couldn’t cry at times I felt I should be crying. I was young and though I shouldn’t have had drinks while on those things, I did and it wasn’t pretty. It was all a cover up of the underlying problem. I immediately stopped taking those pills, sought out the bereavement group I mentioned earlier and got through it all without the medication. Now you couldn’t pay me to take those things, I would never want to go back there. I’ve heard amazing results when cutting out processed sugar for cancer patients, children with diagnosed with attention disorders and much more. I can say the difference between me now and me a year ago, cancer aside, I feel better! Yes it was hard cutting out processed sugar and yes it costs more to ensure I know where my food is coming from and that it doesn’t contain hormones, pesticides or antibiotics. I sleep better, have more energy, and despite the fact that I have virtually no immunity, I have seemingly gone through this cold and flu season unscathed (essential oils aid in this as well). To top it off, I lost 10 pounds in the process that I had gained over the past 5 years. It’s not always easy and the first month was a struggle but the amazing thing is once you do it you realize you don’t even want those things. To be honest, when I cave and have one of the free cookies in the kitchen at work after a seminar, it doesn’t taste the same, the sugary aftertaste lingers in my mouth and I feel crappy when I crash from the sugar high. I hope the latest news about a vast supply of Parmesan cheese that uses wood pulp as a filler opens some eyes. No it won’t kill you, but that’s not the point. People don’t seem to care about what they are eating, but the truth is, there are some really gross things in a lot of food we eat listed under hard to pronounce names. If you knew what they all were you might think twice. I’m not saying everyone should follow my diet, I’m just saying find what’s right for you and your needs. Diet changes are hard but I can say I’m so glad I changed mine.
8 – Attitude is everything
Research has shown that white blood cell count can be higher with a positive mindset. When you are going through a rough patch in life it’s so hard to maintain a positive attitude. It’s important to take steps for keeping up positive energy even when things are good as well. It will leave you better prepared for when a storm hits. Exercise, mediation, reading, are all things you can do to increase your outlook. Books and meditations by Shakti Gawain are some of my personal favorites. Her words have helped me immensely.
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One of the most frustrating aspects to dealing with a chronic illness is not having a very clear picture of what is going on with your body. Thoughts tend to filter through your head such as:
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