This song seemed appropriate for my mood today. Enjoy.
This song seemed appropriate for my mood today. Enjoy.
When you are suffering it’s easy to slip into a state of hopelessness.
I live with chronic illness, my major organs are being attacked one of them is my heart, that means unless God heals me, I am not going to get any better. That also means, each day I have to be at peace with where I am at today, at this very moment. You can be angry about the past or your present right now, that’s entirely up to you. I tend not to give the power back over to the people or my illness that have already ruined things once.
The way I see it is; that I can live life one of two ways;
One; I was born into an unfair world, I suffered and I didn’t deserve how I got treated. I get knocked down too much and I don’t think life is fair so I am not going to even try. Life just sucks…
Two; I can use my circumstances and become stronger because of them. Every time life knocks me down, I get back up again using it as a spring-board. I focus on the good things in life and enjoy every moment in life that I do have.
I choose to live my life exactly like the second choice. I have no time for negativity in my mind because my time is so precious and limited.
I refuse to allow myself to think about how unfair my illness is. I know the consequences in the end, but I do not dwell on them. I am making my life worthwhile anyway though, no matter the trials.
Make your life count for something no matter what is going on in your life. If you are sick, count your blessings still.
I would rather live out the rest of my days being grateful for all the things I do have, rather than be upset, live in regret, waste precious time, for the things I didn’t do or don’t have.
My husband hangs in there. Working two jobs and helping me to do day to day things. We have two kids and even that is a challenge for me at times, he has to pick up a lot of the slack. My health has declined over the last four years and yet he is still here. Out of anybody my illness affects him the most. This is what he had to say.
Before Tabitha was diagnosed with LUPUS, we both worked and were able to provide our kids with most of their needs on a daily basis. Then on that day in April of 2014 when we went to the ER and received the diagnosis that she had a DVT on her right thigh, things started to get turned end over end. Within a few days we were told that she had antiphospholipid syndrome and LUPUS. It seemed that every time we went to a doctor we were told that she had another problem. She lost her job and we were starting to wonder what we would do. I got a second job and we were blessed with me having two employers who are flexible enough that I can be at her doctor’s appointments to support her and help her.
It has been a major adjustment for all of us in the last four years. I spend a lot of my time at work worrying about her and trying to coordinate all of her appointments with my work calendar and trying to keep enough leave time to make sure I can get her to them. I try to do everything I can to help her get through each day. I help in setting up her meds for her and making sure she gets them every day.
I try to put her needs before mine because she needs help with a lot of day to day activities. I believe we will find something one day that will improve her quality of life to a level that she will not be in so much pain and able to function better, but until then I will continue to do what I can to help her. She deserves that from me and I want to give it to her.
In case you missed it…
Previous post includes a letter from my Dad, my daughter, and my best friend.
This is my best friend and her perspective. When you have chronic illness, it’s hard to keep friends close because you constantly have to cancel plans and she does get that from me. I have tried my best to educate everyone in my life what Lupus is. I believe that has helped my relationships.
the little sleep I have had, working over 12 hours a day, going out 10 days straight. I Love you Tabitha.
See previous post for letters from other family.
Let’s get real for a minute.
I think at times I downplay the seriousness of my autoimmune diseases and I don’t allow others in on the reality of my story.
My major organs are being attacked. I have heart blockages in my right bundle branch and I have the beginnings of kidney issues due to lupus. My digestive system doesn’t work as at it should, for my digestive system to break down foods it takes three times as long as a normal system.
I have over ten autoimmune diseases all of them have symptoms of their own. Lupus, Mixed Connective Tissue Disease, Lupus Nuephritis, Gastroparesis Nuerocardiogenic syncope,Sjogens, Autonomic dysfuction, Esophageal dysfuction, Arthritis, Antiphospholipid Syndrome, Autoimmune dysautonomia, Raynaud’s phenomenon, Myositis, chronic pain syndrome, and fibromyalgia. I am sure I have forgotten to list something because I also suffer from short term memory loss.
In case you missed it……
My first letter will be from the man that I call my Spiritual Father but by all rights and purposes he is my Dad.
I am so proud of this girl right here. Not only does she play her flute beautifully but she is a great daughter.
Please Share This.
What is autoimmune disease? The medical definition is as follows; An illness that occurs when the body tissues are attacked by its own immune system.
However, I have my own thoughts on what autoimmune disease means to me.
For me it’s not knowing what comes next. My good days are a normal person’s worst day. It’s the daily renewing of my mind to fight against depression, aggravation, and anger. It’s a daily awareness of how I feel, things I do, and how much I do. It’s a daily fight for my life.
Chronic illness is more than just a disease that makes my body hurt and an illness that won’t ever go away. It’s mentally draining, it attacks me to my core. Some of my biggest fears in life have had to be confronted in order to survive this illness. There isn’t room for wasting precious energy on things that I can’t control.
Facing a chronic illness is not easy, it’s scary and full of unknowns and unanswered questions. It can be lonely at times, even if you do have a full circle of supporters. I often see that other people say that no one understands them, and that is right! No one can possibly understand what you are going through except for yourself. It is your journey. However, we can’t get caught up in how much others do or do not understand what we are going through when we really can’t fully understand it ourselves.
If you are a caretaker of someone with Autoimmune disease, the biggest gift you can give to your loved one is to say I believe you and listen. Understand that this illness is beyond what you can see, physically and psychologically.
If you are one of my fellow spoonies, find a support system of others that you can gather information from and that can relate. If you need a support buddy, message me!
What is autoimmune disease to you?