Tags
I live with the harsh reality that life isn’t always fair at times. These days, I have good and bad days. Some days, I don’t feel like getting out of bed due to physical weakness. Other days, it is hard to stand up due to chronic pain in my joints. Yet, some days I shake so badly (tremors) in the hands, I can’t even hold a coffee cup. Right now, I feel good due to increased frequency and dosage of infusions (a form of chemo) the end of last month. I should have had my treatments increased months ago to an adequate dosage but didn’t. My neurologist tells me my autoimmune has become worse this year. My breathing pattern is more pronounced and my energy level isn’t there at this time. I’m easily fatigued and exhausted.
The autoimmune complications (LEMS) will probably kill me someday but I am not looking at that. I still have a lot of life yet. I live day by day, maintaining an open mind and positive attitude. I started writing two years ago to vent my frustrations due to health issues. I realize most people don’t want to hear it, but it needs to be said. The psychological damage a serious, chronic illness does on an individual is different from a tragic or emotional event. Anybody that begs to differ doesn’t know what he or she is talking about.
Some days I need to vent these frustrations. When I feel bad, it is reflective in my writing I’ve noticed. I can only write what I feel. Life has so much beauty in this world. It is for the taking. It can also be cruel at the same time. It is normal to want to whine and complain at times but I’m here to tell you, thank your lucky stars. There is nothing wrong with venting and we often are forgetful of physical pain. We concentrate on emotional or mental pain, but neglect our bodies. My body wants to scream sometimes and I want to say, “Why me Lord?” It is there, it happened and there’s nothing to change it but prayer.
Forgive others and those that wronged you but most of all, forgive yourself. Concentrate on living life, family and friends. They are your true heroes. Don’t get caught up in self-doubt, disbelief or lack of confidence. Stay away from negativity and negative people as much as possible. That is what keeps me going. Believe in yourself and no matter what anybody says, don’t ever give up. I’ve had to mentally block out what my neurologist and oncologist tell me. Always go for your dreams in life. Tell yourself everyday, “I will, I can” dream big and will not take second best. Give God thanks for changing you inside and all He is going to do for you.
handikwani02 said:
Hi Ann, you are constantly in my prayers thanking God that you are so courageous. I would like to recommend a book if you have not already read it. It is called ‘The Questions which Never seem to go Away’by Philip Yancey you will find it very inspiring.
LikeLiked by 1 person
annepm2015 said:
Thank you so much for your sweet comments and the suggestion of the book. I will have to check it out. God Bless and I always find healing through inspirational words. 🙂
LikeLiked by 1 person
perfectlyimperfect05 said:
You go and vent away any time you need to. 😉 Sending prayers and good thoughts.
LikeLiked by 1 person
annepm2015 said:
Thank You! 🙂
LikeLike
Louisefowler said:
My heart is with you dear lady, endurance is all we have some times. I am with you.
LikeLike
annepm2015 said:
Thank you, Louise. 🙂
LikeLike
JC said:
Yes, it is difficult at times. I feel it was overnight and then suddenly I had Parkinson’s. I try to remember that there is always someone who has it harder than me. And my eyes are suddenly opened; I see the pain others go through and the sadness and frustration and I will be the voice of compassion! I will not allow myself to feel sorry for myself. And I will pray and hope every day that you will be strong. For now I see and hear the Earth and the ocean sing and before Parkinson’s I never bothered with such things and now they are my muse. Thank you for your post and I am always here if you ever need someone to listen.
-JC
LikeLike
annepm2015 said:
Thank you JC. I appreciate your post. I have been there, overnight too. It is hard but you have endured and you can get through it. This has been challenging and yet, sometimes we find our strength through difficult times. You are an inspiration to others. Thank you for sharing and keep in touch. Very touching. Anne 🙂
LikeLiked by 1 person
"Bethie" said:
Hi Anne! Your post came just when I needed a lift. I will try to shut out the negative stuff that is keeping me in bondage. How do you deal with someone who constantly tells you that you’re a disappointment? That is something I’ve dealt with all my life and it makes me very sad and I get depressed and when I get depressed I withdraw, and go within which only makes things worse. I apologize for unloading my anger and upset on you. Still friends??? 😀
LikeLiked by 1 person
annepm2015 said:
Hi Bethie, I’m sorry and feel for your pain. It’s one thing to be dealing with a lot of stuff and another, to be told that you’re a disappointment. I’m always here and you can vent on this blog anytime. Sometimes, it’s good to redirect that pain into what source is it coming from. If anger comes from a loved one, perhaps talking about the frustrations and anguish directly. Sometimes that person needs to be reassured as well. Hopefully, this helps even in a small way. Friends always and no apology needed. 🙂
LikeLike
curtisbausse said:
Keep on looking at those stars – long may they shine to guide you through good times and bad. Bon courage!
LikeLiked by 1 person
annepm2015 said:
Thank you! 🙂
LikeLiked by 1 person
garym6059 said:
Prayers for you, if writing serves as therapy that is awesome. Stay positive and keep on writing!
LikeLiked by 1 person
annepm2015 said:
I find writing helpful for so many reasons. Thank you for your response. 🙂
LikeLiked by 1 person
creakingbones said:
When i think of you I remember a saying my dad taught me when things got tough, ‘just keep on keeping on’ he told me. It works for me and I hope it helps you, even just a little bit.
LikeLiked by 1 person
annepm2015 said:
Thank you. It does help. I’m not giving up and write as a way of relieving frustrations. 🙂
LikeLike
lgould171784 said:
This is an inspirational post, especially the last paragraph. We must all try to keep these thoughts in mind. Thank you.
LikeLiked by 1 person
annepm2015 said:
Thank you for visiting my blog and reading my post. Just a few words to help others going through difficult or challenging times as well. Thanks again. 🙂
LikeLike
bowmanauthor said:
It is so hard to rise above the frailties of the body when the mind soars, but we must, my friend, in our writing. I say this as I stare at my clock, watching it turn 12 noon and I still cannot rise to face the day. I send you strength and that will strengthen me.
LikeLiked by 1 person
annepm2015 said:
It’s wonderful to hear from you. It always brings a smile to my face that someone understands what I’m experiencing. My writing keeps me going. An active mind but a body that is not willing to fly. Thanks for the strength to face another tomorrow and I too, rose after noontime to read your note. I hope this brightens your day and I send strength back to you.
LikeLike
Mallee Stanley said:
Every day I am thankful for good health – you remind me to be even more thankful
LikeLike
Prodigal Daughter said:
People naturally are not comfortable learning or hearing about pain, especially those who don’t experience it or know how it is to be in a chronic condition. They want to help but they don’t know how. Thank you for sharing a personal experience with us. We could learn a thing or two. When we don’t know how to respond or comfort anyone in a situation like yours is not because we don’t care, we just don’t know how. But take comfort in the fact that most often than not we remember you in our prayers. You don’t know it, but you will feel it because that will sustain you. Very nice meeting you on here:) Blessings to you.-PD
LikeLiked by 1 person
annepm2015 said:
Thank you, PD. I believe people do not know, especially a rare disease. While I do think people care, they don’t know how to show it at times. It’s not an easy subject to talk about but I feel others can learn from it and count their blessings. I do appreciate you reading my post and visiting my blog. I look forward to reading your posts as well. Very nice to meet you too. Anne 🙂
LikeLike
secretangel said:
Hi Anne! Chronic illness is a “harsh reality” that many do not understand. It is only going through something like chronic pain that someone can understand. I am sorry that you are going through this but I will be praying for you. God bless you!
LikeLiked by 1 person
annepm2015 said:
It is difficult as it lowers your quality of life so much. Thanks again. 🙂
LikeLike
secretangel said:
Praying for you!
LikeLiked by 1 person
Tienny The Storyteller said:
Thank you for your encouragement.
LikeLike
annepm2015 said:
You’re welcome. 🙂
LikeLiked by 1 person
Tienny The Storyteller said:
🙂
LikeLiked by 1 person
lilylanders30 said:
Thank you for your words, they are inspiring. I have autoimmune diseases/issues myself, and I am often chronically fatigued. I have two boys that need me and a husband, more days than others it’s really tough, but I keep going. Thank you again. ❤
LikeLike
annepm2015 said:
Lily, I’m glad you wrote me. I think chronic fatigue is just part of the disease. My doctor increased my medication and dosage this month. It helps some but I still feel so tired sometimes. I’ve found at least four other bloggers with autoimmune issues/diseases too. It’s so nice to meet you. Please keep in touch and if you ever want to talk, I’m here for support too. Thanks again. Anne 🙂
LikeLiked by 1 person
lilylanders30 said:
It is nice to meet you as well! 🙂 I would love to keep in touch. My email is lilylanders30@gmail.com, feel free to write anytime. I appreciate your offer of support as well ❤ Thank you very much for that. Hope to hear from you soon. ~L.L.
LikeLiked by 1 person
DearLife said:
Reblogged this on makeyourvoicesmatter and commented:
So true.. couldn’t agree with u more. Everything in life in life is too good to be true.. that is an illusion of perception like a mirage.. there are very few people in this world who actually have or gather the courage to face the everday realities of life.. others just live in their own world… they are escapists.. it’s good to know they are still some people who aren’t.
LikeLiked by 1 person
annepm2015 said:
Thanks for the response and reblog. I appreciate the supportive feedback. 🙂
LikeLike
DearLife said:
No problem.. hope you like my blog.. it’s about finding inspiration.. I hope it can help you to find inspiration in something. 👑👓😊
LikeLiked by 1 person
john flanagan said:
Thank You, Anne
for following my blog, i appreciate it
and i’m happy to have found you.
Best Wishes
john
LikeLiked by 1 person
annepm2015 said:
Thank you John for the follow also and the likes. I’m looking forward to reading more of your posts and poetry. Anne 🙂
LikeLike
Janice Wald said:
Hi Anne,
I’m sorry your health is still such a concern. When I saw your headline, Harsh Reality, I thought it was about Jason Cushman!!
He reblogged my Daily Life in California on my birthday.
Feel better.
Janice
LikeLiked by 1 person
Nadyess said:
Beautiful and very encouraging.Thanks a lot for sharing. I’m sending you lot’s prayers and good thoughts to brighten your day! 🙂
LikeLiked by 1 person
annepm2015 said:
Thanks so much and very sweet. I believe that is why I write. To reflect my feelings and thoughts, even if I’m having a bad day. Thanks again. 🙂
LikeLiked by 1 person
Joleene Naylor said:
I had to google LEMS, as I have never heard of it before, and first want to both say i am sorry you are cursed with this, but also congratulate you on your strength in dealing with it. I was diagnosed with Sjogrens in 2007 (Though I’m sure I’ve had it since I was 12) and CREST in 2010, so I understand a lot of what you’re saying. There are days/moments when I want to just cry or shout or say “This sucks. Why me?” but at the same time there’s so many wonderful things in the world that I’m just grateful to get to be in it, and grateful that while I have the challenges I do, mine are minor compared to so many others.
LikeLiked by 1 person
annepm2015 said:
Thank you, Joleene. LEMS is so rare that I didn’t know what it was when diagnosed (spring of 2011). I had never heard of it or knew its origin. When hospitalized, the doctors told me that it is caused by a malignancy (at least in my case). I was diagnosed with breast cancer in late 2010. There is another form that is genetic but is not caused by a malignancy. Since no one in my family or generations before had autoimmune disease, it leaves the cancer theory more practical. I’m sorry for your illnesses and pray that you will find healing soon. I’ve found therapy in my writing actually. It’s normal to feel self-pity and there are days I have pity parties. On the other hand, I am truly blessed to be here on earth now and will make the most of life. Thanks again. Anne 🙂
LikeLike
Susan said:
Hi, Anne – sorry to hear about your chronic illness. Your blog is a beautiful place to be and I’m so glad that writing is helping you to cope with some of the issues related to your illness. I love your blog’s title and the header image. I wonder if we both did the Blogging 101 course at the same time? Thank you for following my blog – I look forward to reading more of your work too.
LikeLiked by 1 person
annepm2015 said:
Hello Susan, Thanks for responding. It’s possible we took Blogging 101 in early January. That is when I first started blogging. It’s been great so far. How have you been? I look forward to reading more of your posts. Anne 🙂
LikeLike
Nil said:
Thanks a lot for the follow 🙂
And I wish you the very best with your health issues, that it will all be under control by and by and you will be able to make the best of your life…
LikeLiked by 1 person
annepm2015 said:
Thanks so much, Nil. 🙂
LikeLike
lexitheschnauzer said:
As a schnauzer dog, the last paragraph of what you wrote (Mom read it to me) is how I always live my life. Mom said that is how she tries to live too. We are both glad you already know this, it is wisdom and what God and nature intends. Blessings.
LikeLiked by 1 person
annepm2015 said:
Thank you for visiting and reading my post. I look forward to reading more of your posts. Anne 🙂
LikeLike
creakingbones said:
I admire you positive approach to life and the way your words bring strength, confidence and hope to your readers.
My favourite song is best performed by Eric Idle, ‘Always look on the bright side of life’.
It helps me when things look a bit bleak, an inevitable occurrence as we get a bit older. A mate of mine told me recently,’ Mate, getting older isn’t for sissies’. How right he is. However, with your positive approach you ‘sure ain’t no sissy’.
Good for you. Inspirational as always.
LikeLiked by 1 person
annepm2015 said:
Thank you so much, Getting older is definitely not for sissies and according to my parents’ views, “Not fun.” I’ve really grown in the five years I was diagnosed with cancer and this autoimmune. No way to prepare for it. It is as a friend said, “Just life.” I tend to love life too much and look for complete health restoration one day (hopefully soon). Wishing you well and stay in touch. BTW, what is your first name or you can email me at annepm@comcast.net if you want?
LikeLike
quirkywritingcorner said:
Thank you for following my blog. I post a variety of things and I love to reblog. Being a retired nurse, I like to cover health & medical issues; as a novice writer I also post a lot on writing; yet, with naturally being curious, I cover a huge spectrum of things.
One of things I’ve recently learned about is magnesium (Mg). In 2008, I was diagnosed with Myasthenia Gravis (a muscle weakness), fibromyalgia, and lastly, epilepsy. I had to retire from nursing. I studied up on all my diagnoses since I wasn’t that familiar with any of them. I learned a lot, but nothing was ever mentioned about magnesium. After being on 3 different seizure medications, I finally refused to take them anymore. My neurologist said to use magnesium.
I was already getting 400mg in the daily vitamin so I started out slow. I used 250mg tabs, taking 1 in the morning and another one at bedtime. I increased it to 2 at bedtime which made for 1150mg total for the day. The improvement was dramatic. I’ve been on Mg for 10 months now, varying the daily dose.
I’ve done one blog on this and plan to do more. I highly recommend you look up magnesium and see what it can do for you. I believe each person requires a different amount; so you need to see what works for you. My fibro pain is totally gone. The fatigue and muscle strength are so much better. It’s a wonderful feeling to wake up refreshed, like I slept well, instead of waking up still tired. I haven’t used my CPAP in weeks.
My Mg level was never low on any labs, but my potassium was several times. I learned that a serum Mg is not reliable and you need a cell count. I don’t fully understand that. One article mentioned that if your potassium was low, chances were good your Mg was also.
Another fact was that over 86% of America is Mg deficient. I don’t know how they came up with that number. Also, Mg is not replaced in the soil. The additives and preservatives in our food destroy some Mg, especially fluoride which binds with Mg making it useless. Magnesium is necessary for every single one of our body functions. You would think that we should be more aware of this important mineral. All I ever taught my patients was that it helped control their blood sugar and helped with wound healing. I never knew it helped decrease cancer, would stop pain, lower cholesterol, or improve breathing.
I’ve always trusted in God, but during some of my worst days my faith wavered. Keep your faith strong.
LikeLiked by 1 person
annepm2015 said:
You are certainly welcome and thank you for replying. I do take Magnesium along with Calcium and Zinc together. I am familiar with Myasthenia Gravis as I have a cousin of it, Lambert-Eaton Mysathenic Syndrome (LEMS). I developed it through breast cancer over four years ago. But I am intrigued that it helped with your fatigue in the morning. That is at my worst time, when I wake up. I am not only stiff, I feel I have never slept for 8 hours. I will mention this to my neurologist when I see him next month. Thanks again for the information. 🙂
LikeLike
Carl D'Agostino said:
I live with the harsh reality that life isn’t always fair at times.
I agree. I would have created the would and life differently. I have survived open heart and cancer radiation, however. I think it all makes us appreciate the good things more though.
LikeLiked by 1 person
annepm2015 said:
Carl. I’ve had the cancer radiation therapy over four years ago but not open heart surgery. Both sides of my family have heart disease so I’m hoping my faith will interfere there. Best wishes for health, happiness and healing. Anne 🙂
LikeLike
Carl D'Agostino said:
A very substantial thing we can do for our hearts and aortic network is to eliminate sausage, pepperoni, salami and bacon from our diet.
LikeLiked by 1 person
annepm2015 said:
Carl, also doctor advised gluten-free diet for cancer and autoimmune. Anne 🙂
LikeLike
purpleslobinrecovery said:
Such excellent advice about forgiving, and thanking God! I agree 100%.
Melinda
LikeLiked by 1 person
annepm2015 said:
Thanks, Melinda. It has taken me a lifetime to really learn this lesson of forgiveness. It didn’t come easy but once it did, it freed me. Thanks for the response. Anne 🙂
LikeLiked by 1 person
purpleslobinrecovery said:
You’rs so welcome. I know, I’m 54, and I’m finally getting some stuff thru my thick head! Melinda
LikeLiked by 1 person
Monique Gordon said:
Right, some people don’t understand. If you put on a little lipstick and and laugh, they think you’re bluffing. Someone called me Mrs. Goldberg (which is derogatory) because every time she calls I’m relaxing. I deserve to relax. I had a rough night’s sleep. After check blood-sugar, listening to Continuous Glucose Monitor sound, and changing insulin-pump, I’m tired. Response to friend: Mrs. Goldberg is too busy to listen to your crap. Good-bye.
LikeLiked by 1 person
annepm2015 said:
Monique, LOL I agree with you. Some people don’t look medically ill (and you don’t). I get the response, “You look good” often but inside I feel awful. Thanks for the feedback and uplift. It brought a smile to my day. Anne 🙂
LikeLiked by 1 person
Monique Gordon said:
One “friend” called everyday after my accident asking, “Are you okay?” When I graduated from a walker to a cane she stopped calling. No she talks to me through her daughter. She asked her daughter if it was okay for her to visit me about a million times. I told the daughter if I’m asked one more time the answer is no.
LikeLiked by 1 person
annepm2015 said:
Good for you, Monique. You have the right to say no always. 🙂
LikeLike
Krista Kemp said:
A dear friend of mine has been battling with Stage 4 Hodgkin’s Lymphoma for years. His doctors informed him that he would meet his demise in October of 2006. He is still kicking, still full of spunk, and ready to tackle each situation as it arises. At his last doctors appointment he was informed that his cancer had gone into remission, and the lung that had previously deflated was beginning to rejuvenate itself. He has his good days and bad, but he refuses to allow others to feel sorry for him and there are very few who are even aware of his condition. Illnesses are hard to cope with, but you are doing a fabulous job. Writing is one of the best forms of therapy, and your positive approach to life is an inspiration. Thank you for sharing your struggles. There are those in this world who need to hear it.
LikeLiked by 1 person
annepm2015 said:
Thank you for responding and your friend is to be admired. I had a reactions to infusions and haven’t had it this bad in several years. I think I just need a physical checkup. Hopefully, the doctor can get my immune system stable again. It’s awesome hearing about people like your friend. I have a friend that has lived almost 14 years with Leukemia and had a brain tumor a couple of years ago also. Their stories and lives are an inspiration in themselves. Writing is great therapy and happy to be back on the keyboard tonight. If I can be an inspiration to at least one person than I feel I have done well. 🙂
LikeLiked by 1 person
Krista Kemp said:
You have and you are! Keep it up-you’re amazing!
LikeLiked by 1 person
Janice Wald said:
Hi Anne!
Thank you for visiting my blog. I’m glad you liked my expert interview.
What’s going on with Jason Cushman? No more posts in my inbox. I tried to go to his site, and it says I need permssion to access? That was yesterday, no word.
Do you have “permission”? Do you get his posts? I wrote him on Google+, but so far no word. Please let me know. Thanks,
Janice
LikeLiked by 1 person
annepm2015 said:
His site is set to private. I tried to get public access but I haven’t heard from him. Like you. I tried to email him at Google last week but nothing. Other bloggers tell me his sites are shut down on blog and Yahoo so who knows. I hope he and the family are okay. Please let me know if you hear from him. I’m sure it is to keep a low profile on the troll bothering him.
LikeLiked by 1 person
Janice Wald said:
I agree. You let me know if you hear. Thanks.
LikeLiked by 1 person