Customarily, I am a very optimistic, upbeat, positive person, despite this, the last week or so has posed quite difficult for me. The pain I am experiencing in my body is practically unbearable. I truthfully contemplated sharing this information at all, I do not know that it may help others to not feel alone. That is precisely why I am motivated to disclose the most private parts of my life at times.
Living with any illness is challenging, when you are dealing with multiple chronic illnesses at once, it is exasperating. In addition to turning your life upside down, it also distresses you mentally, emotionally, and physically.
What I am dealing with lately, is a bit “out of the box”, so to speak. I’m finding it very challenging to hold my head up, literally speaking. My shoulders feel as though they cannot support my neck nor my head, the entire musculoskeletal area of my back hurts. It all feels weak and aches.
My rheumatologist administered cortisone with lidocaine shots not too long ago, these gave little relief. Muscle relaxers are not working. Over the counter pain medications are not working. It is not comfortable to stand, sit or even lie down.
My rheumatologist (under federal and state guidelines) can no longer prescribe tramadol for relief. He is suggesting that I see a pain management doctor. Pain management doctors can take months for an appointment and I cannot endure months of this pain. I have never been one to ask for nor take pain pills unless it was necessary. They make me itch, hyper, and feel not like myself. As of now, I do not see any other options. I have tried natural and homeopathic suggestions.
To make matters worse, about a week ago, my x-rays determined that there is a narrowing of the L5-S1 and that I have spurs in the area of my C5-C6 vertebrae. These are contributing to the nerve pain in my back, shoulders, arms, and head.
At a visit yesterday with yet another gastrointestinal doctor, he determined based on my history and numerous tests, my autoimmune diseases are wreaking havoc on my gastrointestinal system. I feel as though I am taking steps backward. I do not want to relapse into the person that I was physically and mentally, two, three, four, or five years ago. This time in my life is feeling overwhelming.
Yesterday, I shut down. I tried to disassociate from the pain. I had to pretend that I was not experiencing it. I felt completely powerless.
We received an invite from friends to spend some time out. I encouraged Ed to go and have a good time, he declined. Deciding to stay home with me and take care of me. That speaks volumes for a partner and a man.
Ed expressed exactly how he felt about seeing me this way. I realized I was not only hurting mentally, emotionally and physically; this was scaring him. He had not seen me this way before, or at least to this extent. He was worried. I know that I am strong, I tend to push through these setbacks alone. He made me recognize that I was not alone. He talked me through it. He wanted to know what I was feeling, where it hurt, how he could help, what we needed to do to help me with the pain. I began to understand, I did not need to isolate myself from him during this struggle.
I did not have the energy to get up, Ed prepared me soup, tomato soup at that (he hates tomato soup and ketchup, this is a big deal), he then put the heating pads in the bed and situated them. He made sure I had everything that I needed to be comfortable and reduce the pain. We talked about going ahead with contacting a pain management doctor. We talked about how beneficial it may be for both of us to try to get out of the house more for physical activity.
Through this pain and this struggle, I am so very grateful for this man that God has put in my life. I absolutely love making his life easier, I know he suffers physically also. I know what he goes through daily. I see how he pushes himself to work. He could easily be selfish and use his free time for himself, he chooses to use that time to spend with me. I do not want to be an inconvenience in his life.
As I write this article/ blog at 5:25 am this morning, I want to thank God for the blessings in my life. I want to thank him for Ed being one of the biggest blessings of all. It is truly the smallest thing this man does that makes the biggest difference in my life. His support and care play a tremendous role in my well-being and comfort. I may complain when he insists on me maintaining a strict diet based on my GI issues, going to bed at a decent time, or setting boundaries in certain situations to eliminate undue stress on myself, but he honestly knows what is best for me 99% of the time.
I do not know what the future holds, I know having a partner with a chronic illness can be difficult. I know that I am all in with him. I pray he can last this journey with me. I would not want anyone else by my side.
Although I have these rough days and weeks, there are silver linings as you can see. Not feeling alone any longer, being with someone I love, having someone to care for me, having someone that wants the best for me. These are all the silver linings throughout this miserable chronic illness mess. Nevertheless, I am choosing to make this mess into a masterpiece, although we may have a few setbacks along the way. We have each other.
Yes, I am still in a tremendous amount of pain as I write this; yet, knowing that I have another day with Ed by my side and we are going to accomplish something together today, it makes life worth living and helps me through it.
Wish me luck on finding a great pain management doctor and gaining a grasp on this pain before it worsens!
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