brushing it all under a rug.

I’ve been in hiding.

There are so many of you I want to reply back to and I will, I promise. In fact, you are part of the reason I am returning. I’ve wanted to face my health full force and I have let myself down on that front. I’ve said it before and I’m sure I’ll say it again because it has always been a common theme in my life: I still very much have a part of me that thinks if only I would just change my thoughts, it will get better. The bad will no longer exist. Maybe a reason I feel the need to go back to this belief is this: I have a family member who is very important to me that grew up in the same way that we were not to be hypochondriacs. This family member told me very specifically that they think most problems are just all in our heads. They have compared me “jokingly” to another family member who happens to really be a hypochondriac. And I would be lying if I said it doesn’t eat away at me. I have not heard as much from this person as I have gotten worse and I do know that a part of it is because I have changed. I have become more solemn and down. I’ve become busy and more tired. I am afraid that the other part is they don’t really believe what I am going through is real. And I think the reason why it gets to me more than anything (other than how much I love and respect this person) is that a part of me doesn’t believe it’s real. It comes back to the thought that this is in my head. I am trying my best to make my health issues not be what my life is about. I have so much more to me.

I have gone through years of having symptoms and worsening periods of time. I’d start searching for an answer and when something would come back negative or i would start to feel okay again, I’d give up the search… until something new would happen and I would feel like I had no choice but to find out what was going on. My problem is that I have always been too open. People get tired of hearing about things that never get resolved. And in this wonderful, complicated world of chronic/autoimmune/etc. illness, you go down about a billion paths before you ever begin to figure out what you should be getting tested for. People start to feel like this all too much. You have to be exaggerating. You have to be just wanting attention. You must be a total drama queen.

No. How about I want to understand? How about I would like to be understood? How about I am a total think out loud kind of person? There are so many people that have reached out to me because of my openness on this blog. I say how i feel in any moment and sometimes I can contradict myself but this is me. This is the real me and sometimes I am overdramatic but the funny thing is that I never do it as an act. I cry because I cry. I laugh because I laugh. I love because I love. And I have my own way of expressing it. I have my own way of dealing and sharing. And I share all that I am going through with this and more because I wish more people would be fully open. It helps me. Raw honesty. Finding those people you can truly relate to. No matter what the subject. I want to know the good and the bad. I don’t want to just know what is physically going on. I want to know the feelings. The whys. So I just continue sharing. I drive some people nuts but I have learned through the feedback on this blog and even some of my posts on Facebook, my words and thoughts matter. You can’t please everyone but I hope that others know how much their words and thoughts matter to me as well. Life is not easy and there is nothing worse than feeling like you are alone in your feelings or what you’re going through.

I’ve taken pictures of symptoms but I felt one should be taken in a moment of quiet grief and isolation for me. I was in bed because I had to be. I couldn’t be up and about and I was frustrated. She couldn’t this time but I do have a best friend who would and has laid there with me. I have a boyfriend and daughter who will do the same. I feel lucky in that way.

There is always something and I am all too aware of that. My doctors were positive I had Sjogren’s Syndrome. My mom has it and I have symptoms. By positive, I mean they would have been willing to put money down on it. But I failed to meet all the criteria – namely the lip biopsy. I may show early signs of it instead but here is where I hear a lot of doctors will stop. The lucky part for me that most people don’t have is that despite this, my doctors still knew something was wrong and they have pushed for me to keep seeking answers. It was never written off as me being a mental case. They never tried to push medication on me. I have abnormal test results and as much as POTS and autoimmune diseases and chronic illnesses are often considered “invisible” – I had and have a lot of visible symptoms. You can see the fatigue in my face a lot of times but I am not even talking about that. I have been validated by my own doctors. How many people can say that?

I brush it all under a rug anyway… despite having some of the most clear cut evidence. It is really hard to face as a whole. I am so exhausted sometimes I can’t wrap my head around what’s been done, what needs to be considered further, what needs to be done next. I have to focus on work and my daughter and my home and my life. Insert spoon theory here (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)… I don’t have enough spoons for normal daily life! I used to struggle in the past but I would have periods of getting better and that’s just not happening like it used to anymore. I am not rebounding like my younger self and i am not by any means “old.”  I am not even staying in the same place. I am getting worse. And the more I get worse, the more I struggle to stay on top of things, the more i fail to meet the goals and plans to get myself better. So it’s a nice little cycle that only seems to point to one thing: me getting worse. This angers me. I don’t want that… so much so I will push myself over the edge.

I last wrote about my swelling. This has worsened. I am gaining weight and for no reason. There are weeks where I have to force myself to eat because I have zero appetite. I went to a doctor yesterday that I haven’t seen in a couple of months and when she came out to the waiting room to get me, her eyes widened. She was extremely concerned because I am “very swollen and bloated.” Not just in my legs and feet or abdomen…but also my upper body, my face. I am so uncomfortable. I haven’t had a normal menstrual cycle in quite some time. It’s very light and I never get relief. In fact, a way I have described it is that I feel pregnant but without actually being pregnant. It is getting worse and worse.

My blood pressure and pulse has been all over the place. The swings back and forth are really getting to me. I have tried to document a lot of it today (see below). Since this morning’s low of 56 bpm, I have not been able to get my heart rate below 100… and I have been laying down for the majority of the day. I have a headache I can’t get rid of and to be perfectly honest, that’s probably a major reason this post is all over the place (sorry guys!).

First thing this morning from lying in bed to standing. Horrible feeling.

Being upright today has not been so good.

I could not get my heart rate under 100. First photo is me laying down, second is me sitting and the third is me standing.

swollen legs and feet. high bp when standing, low bp when laying down.

I just wanted to at least let people know I am still here, I have have read and appreciated your thoughts and questions and I haven’t forgotten about you. I am currently struggling to overcome and since I have overcome so much in my past, I am sure I will get through all of this too. I just have to continue doing it my way and for me, that’s keeping real about how I feel whether it be positive or negative. Truth is, it doesn’t matter if I am positive or negative – my heart and blood pressure and body is going to do as it damn well pleases. In fact, I think the one thing that would make me worse is pretending to be positive when I am not feeling that way or trying to suppress my real feelings because so and so thinks I should. When I am feeling positive, I am going to really feel it just as I will allow myself to feel the negative as well. I will cry and do what I need to do.

The problem with brushing things under a rug is eventually, you’re going to trip over it. Thank you to everyone who has stuck by and with me thus far anyway. I know it isn’t always easy… but here we are. And for that much, I am grateful. This includes my doctors. Their patience and understanding of my hang ups have been more help to me than they realize. At the same time, they have been firm and do not hesitate to lecture me. Yesterday, the doctor told me that my #1 priority right now needs to be my health. I need to prioritize it over EVERYTHING, including my job. There are so many unanswered questions and she feels that the sooner we figure this out, the sooner we may be able to prevent future complications. She also feels that some of the things going on with me are red flags for some serious stuff and I can’t just dilly dally, waiting for the answers to fall on my lap. I can’t make any promises but I do hope with all my might, that I can get myself together enough to get this done. Just push right on through despite my concerns about time, money and missing something. Easier said than done… that’s for sure.