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Fighting the battles

I want to first say that this is a very emotional post but I think it's honest and necessary for me let out.

Some days I want to fight like hell to combat these disorders. Then there are days when it seems to much to bear and I wish God would just let me go, take me. I almost died five and a half years ago giving birth to my precious daughter Madison. At first I was panicked knowing I was going to die, desperate to live, begging for them to do something, anything. One of the young nurses prayed with me lying there waiting for the doctor to figure something out. They'd already tried everything they knew to do and nothing was working. I'd already lost all of the blood in my body which they'd replaced and then some, 9 pints. Finally the doctor asked me for my permission to try one last option, a hysterectomy. It was a risk, even more dangerous as it would cause more bleeding. He told me that I was already dying and that I may not survive the operation. Even knowing that I said okay, I was done fighting. As they were wheeling me into the ER I suddenly felt calm, peaceful, unafraid. It was a peace that is extremely hard to describe. I was surrounded by a bright light, everything was white. It wasn't a blinding light like the kind that hurts your eyes, more like everything around me was just no longer there, it was beautiful. It was then that I heard a voice. It wasn't an audible voice like someone actually talking to me. I didn't hear it with my ears, I just heard it. I heard the simple words "it's not time". Then nothing. When I do remember opening my eyes I was in a regular hospital bed next to a glass wall. The first thing I asked was "what day is it?". My husband, who was sitting beside my bed told me it was Tuesday, 3 days had passed. I was alive.

I no longer have a fear of dying. What I'm afraid of the most is the impact on those I'll leave behind. My family, my friends. I don't want them to hurt, to experience the pain of my passing. I know I may not die anytime soon but there are days when the physical pain and suffering is so severe that I wish I would. I just want relief. I don't want to suffer. But yet... I'm not done. I don't feel that I've yet accomplished what I was let live for, even if I don't know what that reason was. So for now I will keep fighting until the day when that voice finally tells me "it's time".

Trapped

My physical pain is becoming more excruciating every day. My skin hurts, I can't stand my clothes touching me, the blankets on me at night. I can't take a shower even with the lightest spray, anyone touching me, especially to rub my arm or back.

Eating is becoming more difficult. Most foods hurt going down then cause stomach and abdominal cramping. I'm losing weight I'm sure. Even soft foods, they go down but the cramping starts. Nothing tastes really good anymore but I'm so hungry. I eat even knowing how much I'll suffer but it doesn't seem to be enough. Constipation is a major problem. Taking all of the vitamins and minerals is making my esophagus very tender and sore. I'm pretty sure this is all due to the sjogrens and IBS.

My muscles cramp. I'm pretty sure a tendon in my ankle has torn after a severe cramp one night, too much walking aggravates it. The back muscle cramping makes me feel like I'm having chest pains, it radiates.

My bones hurt. Everywhere.

My joints are sore and very tender to the touch and more with use.

I'm not sleeping well, waking up almost every hour during the night. I can't always fall asleep during the day for more than an hour. I'm so tired.

I'm emotional. Sad, scared, confused, forgetful, angry, numb, lost.

Trapped....in a body that's broken, worn out, attacking itself. No one should ever have to suffer this way. No one.  

Pain, pain go away....

Today has been a total blur of pain. From the time I woke up I was barely able to move. My joints were all swollen and very tender to the touch. The center of my back felt like a spike had been driven through it sometime during the night. I'm thankful that Jon was off work to help with getting Maddie off to school. Just brushing her hair was painful and exhausting. I wanted so badly to paint today but was only able to apply a coat of gesso to my painting. I sat most of the morning with the heating pad on and off on my back. When I finally felt able to attempt something constructive, I made a batch of Rice Krispie Treats. That alone exhausted me to have to take a nap. I slept about an hour and a half, waking up feeling worse and hurting even more. Later, after making dinner and cleaning up, I was clearly done for the day. Time to sit, again. Sitting down and staying down is the hardest thing in the world for me. I've always been active and knowing that I can't hurts more than the pain itself. Pain, pain go away ....forever.

Thank you!!

Thank you to all of my friends for their love and support through my blogs, via Twitter and Facebook. I am grateful and couldn't do it all without you! Have a safe and happy holiday!

XOXO Deana

It Starts Today!

30 Things About My Invisible Illness That You May Not Know

1. The illness I live with is Fibromyalgia.

2. I was diagnosed with it in the year 1996.

3. But I had symptoms since 1990.

4. The biggest adjustment I’ve had to make is slowing down.

5. Most people assume that I am a strong person.

6. The hardest part about mornings are getting through the first hour of the pain.

7. My favorite medical TV show is House.

8. A gadget I couldn’t live without is my computer.

9. The hardest part about nights are being able to sleep through the night or rolling over during the night.

10. Each day I take 34-36 pills & vitamins.
11. Regarding alternative treatments I I do take supplements.

12. If I had to choose between an invisible illness or visible I would choose visible.

13. Regarding working and career I really miss the fact that I had to quit working and cannot work outside the home.

14. People would be surprised to know just how much I really do suffer on a daily basis.

15. The hardest thing to accept about my new reality has been having limitations.

16. Something I never thought I could do with my illness that I did was reach out to others.

17. The commercials about my illness are not realistic.

18. Something I really miss doing since I was diagnosed is working.

19. It was really hard to have to give up my last job.

20. A new hobby I have taken up since my diagnosis is blogging.

21. If I could have one day of feeling normal again I would go parasailing.

22. My illness has taught me that I am stronger than I ever thought I really could be.

23. Want to know a secret? One thing people say that gets under my skin is "Have you tried..."

24. But I love it when people show support.
25. My favorite motto, scripture, quote that gets me through tough times is "tomorrow is another day".

26. When someone is diagnosed I’d like to tell them to surround themselves with loved ones and develop a support system.

27. Something that has surprised me about living with an illness is the number of people who have the same illness and understand where I am at.

28. The nicest thing someone did for me when I wasn’t feeling well was help me with Maddie and give me time to rest.

29. I’m involved with Invisible Illness Week because I feel that it is important for people to understand how to help their loved ones through the rough times.

30. The fact that you read this list makes me feel hopeful that you can reach out to someone you know with an invisible illness with a little more love and understanding.