Lost- A sense of losing one’s self

Last week when I posted Lost, a poem I wrote, I had no idea it would quickly become my most popular post. It seemed to resonate with many of my readers. The loss of one’s self seems to be a common occurrence with the chronically ill, especially at the beginning of the diagnosis. I have received many comments, messages, and have been asked by several if they can share my poem on their own blog. I was humbled by this. The words flowed easily as they truly came from the heart. I have struggled for months with this sense of loss. It wasn’t until I began seeing my therapist a couple of weeks ago that I truly knew what to call it. It was at that first appointment with AL that I finally learned what I was experiencing.

Loss of self, and the grief of the healthy me. It seems so simple now. These two phrases explain so well, what I have struggled so hard to explain to my loved ones for weeks, no months. The best I could come up with to explain it to them was to say: It was as if one day I was picked up and sat down in someone else’s life. There literally was this one moment where I went from being completely okay to where I was no longer the healthy woman I thought I was. I had to learn a new language, a new lifestyle, and even my social life has been impacted.

I still catch myself at moments thinking ‘Dear God please wake up, this can’t be me. This just can’t be happening.’ It has been an adjustment. I’m still not there yet. I don’t know when I will be there. I don’t know when I will truly find myself again, but I hope when I do, both parts of me remember one another.

Let’s talk about these differences Lupus and APS have brought into my life: Continue reading “Lost- A sense of losing one’s self”

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In the Lupie-Loop

This week I’ve read over some great information about Lupus, Lupus awareness and other topics relating to common threads of interests. I thought I would share them with you all here. Please take a moment and check them out!

This blog is also doing a Lupus Awareness Campaign for the month of May. There are several blog, myself included that are doing various things to raise awareness during Lupus Awareness Month, check out this blog to see what they are doing!
The benefits and risks of long-term Prednisone therapy. I know from my short-term experience a couple of weeks ago, I felt the best I had felt in months on Prednisone, but through conversations with my PCP, it was clear that LT Prednisone was something we want to avoid as long as we can. 
Cartoon image of Christine Miserandino holding a spoon
Spoon Theory by Christine Miserandino. A great explanation of what it is like to live with  Lupus using spoons to illustrate the choices and fatigue we are faced with daily. I have shared this post with friends and family to give them a way to relate to what it is like having to live with Lupus. It has opened up a lot of conversations and helped open lines of communications. 
Stress Reduction
Stress reduction tips and why it’s important to people with Lupus. Stress can be overwhelming at times, not only to the newly diagnosed. Stress plays a role in flares as well. Getting stress levels under control can lead to feeling better overall. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Once a month I will try to post a roundup of information that I stumble across that I think will be of interest to my readers. If you find things that you think others would find beneficial or entertaining and would like to submit it for consideration for June’s round-up please leave a comment with the information, send me a message on Facebook, or

Resources for People with Lupus & Their Families- Expanded

Over the weekend you may have seen me post this image already. I wanted to take a moment and expand upon this a little. There are many resources for help and support out there for People who have Lupus and their Families.

This Flier points out a few quick excellent ones. Definitely check the Lupus Foundation of America’s website and find your local chapter, they can link you to local specialists, support groups and other resources in your area. They also offer free educational material and services as well as a lot of information to read about Lupus.  You can also call the 1-800 number and talk to a health educator if you have specific questions you can not find answers to.

You will notice Listed is a link for Clinical Trials, through clinical trials and research we get find better treatments and eventually a cure to Lupus. Without volunteers and participants this Research isn’t possible. If you are interested in helping find better treatments and paving the way to a cure please see how you can help today!

Other resources for help that were not mentioned in on this flier are your doctors, especially your Primary Care Physician and your Rheumatologist, they probably know you better than any of your doctors, and they will also be great resources for things like counselors and ideas on physical activities that might fit within your physical abilities. Your Rheumatologist may also know of other Clinical Trials in your area that may not be listed with the LFA. Also the larger hospital in your area may be a good resource for information, support groups, and finding educational information about Lupus.

There are also a ton of online support groups, When I was first diagnosed with Antiphospholipid Syndrome back in November, one of the first things I did was search Facebook for support groups, I was surprised at the amount of groups there were. I joined several of them. Some are better than others. I’ve left a few of them, and have learned which ones are most beneficial. Once it became apparent I was also looking at a diagnosis of Lupus I began joining Lupus support groups on Facebook as well. Fair warning there are A LOT of them. A few tips on Support groups on Facebook, some are open which means everyone on your friends list can see what you post. Some are closed which means they cannot. Some are private which means you will have to be invited to the group. Also pay attention to the rules and regulations. Some are stricter than others.

As you can see there are a lot of resources available. I encourage you to take advantage of the ones you think would be beneficial to you and your family!

Here are a few resources for you and your family members if you are living with Lupus:

Ring of Fire!

I’m not one to shy away from spicy food, not even my chronic illnesses will change that! I love heat, when done right. Call it my little piece of rebellion, my little corner of culinary masochism. I am a cook, I can create some amazingly tasty dishes. I also know my way around spicy foods. Not everyone shares my love for the burn. So I have over the years adjusted my desires to fit within limits. Occasionally we will be out for a meal and I will indulge in a dish that is above the comfort levels just so I can feel the warmth of the spicy burn as it engulfs my taste buds.

Spicy food really isn’t a form of self-torture for me. I truly do enjoy it, when it is done right. Throwing hot stuff in a dish just to call it HOT does not deem it a Spicy dish done right. Spice is meant to augment the flavors within the dish not to be the flavor. It should compliment the dish, not overwhelm it. This makes me want Thai food, it is one of my favorite ways to consume the heat, and one of the best ways to achieve the Ring of Fire!

Being Neighborly Through Blogging

To those of you who haven’t notice I have taken part in the Blogging 101 challenge. Today is Day 11 & today’s assignment was to comment on 4 blogs that I had not visited before. These are the blogs I chose.  Each one of their blogs spoke to me, be it their post that I commented on, or their overall blog. I wanted to share with you their posts or about me page that I commented on. I hope you will take the time to check out their blogs fully and perhaps follow
them. Continue reading “Being Neighborly Through Blogging”

The Day Life Changed

#work #wemakesigns #vinylgraphics

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I stood in this spot, 9 months ago. I was there with Doug, we were installing vinyl graphics on the window. These vinyl graphics to be exact:

As I stood and watched as he masterfully applied the graphics to the window, I was struck with dizziness, at the time I thought it was low blood sugar. Later I would realize it was the my body alerting me that there was something going wrong. It was a late July day. It was hot, humid and it was not even noon yet. I remember telling Doug and the lady we were doing the graphics for that I needed to sit down. After a few minutes the dizziness passed and I felt better. We finished what we were there to do and then went and ate lunch. We came home and Doug got ready to go to the place he works for massage. After he left one of our friends called and asked if I wanted to take a day trip the next day to my hometown to show her and her kids around and to see my family. I told her I’d love to. I didn’t mention anything that had happened because at the time I thought it was an acute issue. I phoned my mom after that and told her of our plans to visit. While I was on the phone with her I was hit with a double vision spell, this was the first of what has turned out to be many of these spells. Looking back I wish I would’ve gone to the doctor then. Though honestly I am not sure it would’ve made a difference, I went a few weeks later, with the same symptoms, and it still got me to the same diagnoses of Antiphospholipid Syndrome and later Lupus.

July 23, 2013, that is forever the day my life changed. Since that day I have felt like I was picked up and sat down into some random person’s life. It is almost like being dropped into a foreign land and expected to survive. I’ve had to learn a new language, medication names, medical terms, abbreviations. (R means Thursday folks! I learned that this week). 9 months, granted this journey started with my miscarriage, but I didn’t realize it, but I know thinking back I was aware 9 months ago something was wrong. 9 months I’ve known something was wrong. I often catch myself thinking, this is not me, this isn’t happening. I know it is, I know it is real, but there are moments, I really wish I would wake up and things would be back to the old normal, that life would be simple again. I will endure and I will get through the tough parts of this. I can remember early on my old PCP asking me if I was depressed, I think at that time I was still too scared to be depressed, and now I’m honestly not sure if I know the answer to that question or not. If I read the clinical symptoms of depression, then yes I am depressed, but it’s much more than that isn’t it? I’m still waiting on the Therapists to call me that my PCP has referred me to. I look forward to talking to them. One of my personal goals is to be able to come off of Mirtazapine at some point, which I am actually on for anxiety and insomnia but it is an antidepressant. I haven’t set a time frame for this, nor have I even mentioned it to my doctor. For now it is beneficial, it helps me sleep at night, it keeps the majority of the anxiety at bay, and it doesn’t leave me feeling like an emotionless zombie. Though I admit there are days I wish that were the case.

I’m going to end this because as I expected this has rendered me in tears. I still can’t talk about the first part of my journey without crying. It’s all part of processing it. If you are still reading thank you for letting me share my story with you.

 

I leave you with a peaceful picture and the namesake of my hometown. This is one of the places I took my friend and her two boys. I really thought that day may be the last time I would see this place. It was so beautiful. I’ve been back by a handful of times these last few months and each time I go I snap a new picture.:

Moravian Falls #falls #northcarolina #whereigrewup #waterfalls

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