Posts tagged #chronic illness

Your body your mind

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There is this saying “your body listens to your mind careful what you say”. The issue is when you had an illness like cancer your body says a lot. What should you listen to and what should you ignore? Who do we call and will they listen? These are real questions and concerns we have. I have found myself not telling what is going on because I do not want to seem like a hypochondriac, plus that look. You know the “omg is she for real?” look. I have for the past 3 years try to deal with a lot of my health issues on my own, mostly because I do not want to seem like I am crying wolf. The truth is I am in pain, constant pain. When I write it all out I think “what the hell is wrong with this person?”. I have told my neuro some, a little to my gastro, some to my oncologist, a little to my breast care doc and a lot to my GP but I held most in. Plus you see where I am coming from-which doctor and how much? Not to mention no one had an answer.


Recently I could not take any more “false positive” results, what does that even mean? The “there is something there, we just do not know what” comments were too much. I was sick of the pain with no explanation. So I sought out a new doctor that looked at everything. Heidi Puc is an integrated doctor. Now chill let’s look at the word integrated, it means combining allopathic and complementary therapies. I needed a change and she was it. I sat with her for 2 hours and she combed my case and listened to me. I mean listened to every ache, pain, twitch and tingle. I am curious why more doctors do not do that. She even had about 50 symptoms to ask me about. I feel like I am getting the answers.

Fear-that is a huge issue. We are so scared to get an answer or a DX we do not go. The anxiety and stress of knowing all too well how an illness can change you is mounding. The truth is the unknown is just as scary if not worse. It is time to take that fear and say  “bite me”. We can run from fear or run through it. While I am not a runner I am sick of letting fear consume me.

I am being tested and scanned like a mission in the task force. I am slowly getting answers. What is my point here’? Stop being worried about what the doctor may think or how you may look. Talk to your physician, if you can not fire them and get another. The aftermath of cancer or any illness of that severity is extreme we need to be our own advocate. Now I am not telling you to go to the doctor for every sniffle or hangnail. However issues that are persistent or nagging need attention, go I urge you go.

So while my doctors all listen to me and try to find the source of my pain I will try different meds to help. I will get blood draws and scans. But I will not be quiet any more. This is my body and I am tired of living in fear of it. Someone grab my tiara, I ready to face it head one!


Growing Stronger Together

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Whenever I hear a group of advocates says “I found my tribe” I smile cause that is the best feeling. Then I think who the hell is my tribe? I have so many breast cancer connections that I often find comfort there. But is that my tribe? That feeling of “oh my gwad they truly understand”. Sure they are my breasties that I would be lost without that is factual. See, I was always the one that had such an array of friends I did not know which group was really mine. Yeah I hung with the jocks thanks to my BFF Alissa, hung with the stoners thanks to my HS boyfriend and the preppy crew, and even hung with the smarties. I never had a tribe I just had people. The same thing happened in my adult pre-stupid dumb breast cancer life, I love to just have an enormous group of peeps around me. Then I was diagnosed with cancer….dun dun dun. I realized fast who would be there, who would cheer me on and who would leave. Honestly, at the time, I was pissed but now I get it and it actually helped me. My large circle got smaller and I needed that.

 

As an advocate, you look for those who understand your mission, believe in the cause and want change. So clearly I could find some in the breast cancer community. Like all other advocacy, the BC people divide up by type, stage, and even gender. Fran,kly, it was confusing to me I am a team player and if I wanted in on the Triple Neg awareness why the hell not? But nonetheless there is a divide but I still found my people there.   We waant real education, real change, and reality checks. I love that!

 

Then one year my very dear friend Jen from Booby and the Beast told me to apply for HealthEvoices. What the hell is that? I have been to YSC and LBBC aren’t I supposed to stay with my people? But I thought “shit sure I will apply”. I had no idea what to expect none. But Jen was going to be there and I got to meet Uzma, Brandy and Claudia so win win. That year I arrived and meet Marisa striaght away and it was really amazing to connect with her because she was doing such great things in Lupus but I do not have that so I thought no big deal so far. I also forgot to pack underwear but that is a different blog post I suppose.  Bonus was I found fast was that the Janssen and the Tonic team put so much heart into  conference it is impossible to not feel the love they are spilling for us. They care which really made a difference to me. I never once felt anything other than that.

 

Opening ceremonies I sat in the front with Marissa , I was so eager to hear Jen speak! I was quickly immersed into  the stories being told from the HIV, IBD and many other communities. I remember thinking “WOW there is advocacy all over” And then Chrisa got on stage and she started to speak. She talked about her son who is schizophrenic and what it was like raising him and being his caretaker. She said something that I’ll never ever forget.“Why is it OK and acceptable to give our child chemotherapy if they’re going through cancer. But if a child has a mental illness we all gravel and are shocked when we want to give them medicine“. I sat there sobbing not because of her son but because at that time my son was going through his own mental health issues and we were debating whether to put him on medication. And I thought “she gets me she understands what I’m going through”. We’ve been friends ever since and she added me to an amazing Facebook group. What a connection that was?

 

Then I applied the following year I thought shoot I had such a great time I would try again. I did not think I would be accepted but I was and I was so freaking happy. I was also there with Wisdo doing videos so it was double fun. And double the amount out of work- I was wearing about three different hats that year. So that was the year that I was told that I had MS. Truth is I  hadn’t really told many people I guess mostly because I didn’t want to admit it -stupid dumb MS. Then I met this guy Dave and he was so full of life, so vibrant and freaking hilarious. He was also in a wheelchair advocating for MS and I was in awe. I thought holy pins and needles I am going to get through this shit show. So I went up to him and I said “hi my name is Annmarie usually blog for breast cancer. But I want you know that I have a MS”  He said something on the lines of “well that sucks”. I thought this is my guy I love this dude. And we been friends ever since. Together we grow!

 

So it brings me to this year in this very long post that you probably haven’t even gotten to the end of them are wondering why she wrote it so long. I couldn’t have been more thrilled to go and  the anticipation was already leading up to it. Everybody was messaging each other and we couldn’t wait to be around one another. The year before I connected with Michelle  mostly because she sat next to me during open mic night and crack jokes. She has an extremely inappropriate sense of humor which of course I gravitated towards. So I couldn’t wait to see her. The cancer community is not just BC which is pretty freaking awesome too because I may have never met my little brother Kyle who runs Check 15. See I was supposed to go to the Cancer Summit and I ended up in the mental health summit which was fine but it made me think. I watched the Twitter feed and the Instagram feed and saw all the pictures of the different groups together -the RA, diabetes and IBD and many many. I sort of suck for not naming all the advocates, so do not be an ass check the link to HEV and read some! 

 

 

And I had a revelation. Honestly it brought me to tears. I don’t have RA and I don’t have diabetes I don’t have a lBD and I’m not HIV positive. I am a hot ass mess yes but with MS and breast cancer and a whole lot of mental health. But the truth is I am a part of all those groups even the ones of illnesses I don’t have. This is my tribe. It brought me to tears and I don’t cry easily so you know I had to be serious. Being a part of healthy voices and what Janseen has created is unbelievable to me and I am so thankful to them, they care I swear they do. I miss them come Monday when the conference is over, I worry that they are ok. I miss our selfie‘s and our laughs. And our extremely inappropriate humor sense of humor. Gabe Howard my have seen that I do not have nipples it was educational even though it possibly made a few uncomfortable...ummmm the other  Gabe. Doesn’t matter that we don’t all share the same illness or nipples or testicles. what matters is that were advocating for a change and for people to understand us. I have to say that I’m sick of preaching to the breast cancer choir they’ve heard it they know it and they’ve lived it. It’s time to preach outside my circle they have them understand what I’m going through. At a conference like this I can connect with advocates for each other but I walked away with new friends I walked away with people that I consider my family. I walked away knowing that these people advocate not just for me but with me. Knowing that if I looked like I wa sin pain at 1am they check, Rachel

  Alycia Bridges  I really do look up to you

 Alycia Bridges I really do look up to you

 


When you ask me who is my tribe is this is them! They are eclectic, they are amazing and they are empowering. They are there is you have a PTSD break down if you have and sister with cancer, if you need to talk about sex or lack of and most of all you do not have to pretend with them or share a late night pizza.  It has been an amazing few years with this group of misfits and I have been honored to be a part. And they like me they really like me!!! The bonus NONE  of them will take my tiara well maybe Robert.

No tiara today

I couldn't get out of bed today but I did. I couldn’t walk on the treadmill but I did. Not because I wanted to but because I needed to push as much as I could.  I did however get in the shower but I could not get dressed without tears of pain. Screaming for my husband to help me my body was frozen in such pain, legs numb and tingling, eyes blurred and hurting. It took thought to make my legs move, it was like my brain was not reaching them. He helped me to the couch slowly each step so excruciating my tears were uncontrollable. His eyes filled up with tears and fear. He gently helps me to the couch wincing as he does- scared he will make it worse. I lay there not because I am lazy but because I can not do anything else. I moved slow throughout the day each step hurts as my foot hits the floor, I can not feel it but the pins and needles remind me it is there. My face tingles to my lips causing me to feel like I am going mad, maybe today I am. The right side is not only numb but tingling so much. My right eye is blurry and aching, I am having floaters all day. The spasms in my leg jerk my body which makes my back pain sting. By the end of the day I am dragging my right leg and needing assistance walking even ten steps. I notice my clothes are on inside out but at least I am dressed. The kids make dinner and the worry sets in their faces. When mom can't cook she is hurting in a way that scares them.

 

I work pushing through the pain. Laughing and trying to stay focused yet each breath is a reminder of the hurt while my legs are numb no matter how I sit. Work, pain repeat until I can not take it any more. I must sleep, laying down finding a spot that is not too awful I crash hard to the sound of kids playing, lawn mowers, birds things that usually keep me awake. Not today the pain, numbness, the tingling is overwhelming.  My eye aching and the blurred vision was too much to take today.  Is this how summer is supposed to be, where is my tan? Pain is exhausting, real exhaustion. I was a true spoonie today!


Just because I do not look sick does not mean anything. The pain is so real and intense I wonder why others can not see it. This is not a pity party, this is not searching for sympathy. This is nothing more than the reality of a relapse with MS. This is a day that I may seem fine on the outside yet inside my body it twisted in pain. Today there was no tiara.

 

Cancer and Nutrition a Lyfebulb Social Event

When I was diagnosed with cancer it was doctor appointments out my ears. The oncologist, the breast care and the plastic surgeon. No one ever mentioned my lifestyle and how I ate or exercised. Maybe my fabulous before cancer body told them I knew this already. BLAHAHAAH we know that is not true. Cancer brings stress and if you deny this then maybe you are a robot. Some people when they are stressed over eat some under eat either way it is not healthy. Some can work out to relieve the tension some can not even get out of bed. Clearly we need some help here. Yes my cancer center has a nutritionist but no one made that appointment for me, seems to me it should just happen with any serious or chronic illness right? I have always believed that food fuels us from both the health aspect and the emotional. This is the time we need both. 

 LyfeBulb hosted a Social Event to bring cancer and nutrition together, yes you read that right. Now let me first say that I in no way shape or form do I  think eating healthy and exercising will cure shit. BUT it will help your body with the fuel it needs to get through treatment, surgery, stress and all the scans.Exercise in any form is good for your mind as well as your fabulous body. I will also say that eating a bag of skittles is bad for you but can be done every now and then if you are eating right, right? The event was at Le Colonial where the food was delicious and healthy and cocktails were yum! They event started with Susan from Savor Health so let's being there.

The idea behind Savor is that while you are undergoing treatment you can use food to nourish your body and mind. There was no talk about curing cancer but using your body with food to help how you feel during this time.  What a great concept?! It matches your cancer with what your body needs and creates meal plans. Again great but here is my but. Why isn't every center using this? I feel like all the hospitals should be offering us this and our insurance should cover the cost. If we feel better from eating healthy our recovery and healing will be greater. This should be offered at all centers and pushed on every patient. Those with metastatic disease can get through chemo better because their body is prepared. Seems like a no brainer to me. Just my 2 cents here.

Next came Professor Robert Thomas who is an oncologist believing in health integrated with chemo. YUP I said that right. He was not telling us that eating broccoli soup was better than chemo he was saying that with chemo and eating what works against your cancer can shrink tumors. Maybe it was bullshit but when he showed the scans it was real. Ok so may the chemo is what did it BUT I think that because your body was feeling good than you were able to take chemo better. Cancernet uk gives you the info you need to see for yourself. When the Professor first got up I was thinking he was going to be stiff and just spew facts and data, it was the opposite. Relaxed, witty and just easy to understand. He did not throw medical terms that we did not understand but things we did and how it helps us. The other thing that the professor was saying is that it is ok to eat that NYC hot dog when you are eating healthy because it will balance it off. Do you see the benefits from listening to him? My posse kept him, his friend Andy and another friend Stefano from Helsinn at the restaurant until they basically threw us out. The professor really listened to our concerns and our life and wanted to us to see how his research is making a difference. We were sold-we also choked him with his tie (I think there maybe pictures). 

Helsinn pharmaceuticals scary right cause it is big pharma and we all know there are blogs on this. You are 100% wrong!!! Helsinn is listening to the research that Dr. Robert Thomas is doing and making products to enhance our health. They are an integrated  company that is using both alternative health with their medications. I have always believed this is how we are going to health faster and make ourselves more comfortable.

You all know I do not sugar coat shit I am not Willy Wonka. This was such an invigorating event seeing not only where health care can go, but from passionate doctors and companies that are trying to make this happen. What if you go to chemo and they do blood work and see what you what are lacking in vitamins and minerals then they give you a meal plan based on your bodies needs. What if then you eat that food and balance yourself? What will the outcome be? I  just want all the best for us, for us to have everything we need to get through this the best we can. I urge you to check into this cause hey you never know and what could it hurt?