Hi guys, I’ve been under the weather a little lately. Nobody likes a depressing post, including me. Yesterday, I didn’t receive a very good report. I went to my regular neurologist yesterday morning. The doctor advised that the autoimmune (Lambert-Eaton Myasthenic Syndrome) illness is worsening. He prescribed a new medication used to improve muscle strength in patients with a certain muscular disease (Myasthenia Gravis). It helps with neuro-transmitters to improve strength and to feel better in general. He also increased frequently of IV-G infusions to monthly again.
The doctor called back this week and increased dosages on infusions. He has increased to 1 KB per day for two days straight. Cancer Center says this is a lot of medication and may break it down (in half) at first.
This is harsh reality for me but I still hold that one day I will improve and can get better. I have had this disease for at least four years now, maybe a little longer. It was not diagnosed until spring of 2011. The doctors tell me it developed after diagnosed with breast cancer in the fall of 2010. This sounds like a broken record, I realize.
I don’t want any pity and I will stop this “pity-party.” I just want to vent this emotion I’m feeling at the moment – one of despair right now. I’ve fought a battle with my health and sometimes I feel defeated. I haven’t given up the fight but I think finding a cure is pretty grim.
mnghostt said:
Ouch! well, hopefully they gave you something for the aches and pains.
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annepm2015 said:
Yes, the doctor did yesterday but it’s strong stuff. It makes me sleepy. Thanks for replying.
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mnghostt said:
no worries
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Send Sunshine said:
I hope this finds you well or perhaps a tad better. I send you prayers and wishes to see you on solid road to recovery! 🙂 Much <3!
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annepm2015 said:
Thanks so much – I really need it right now! I found out yesterday. I had to go to bible study today and almost in tears. It’s a battle I’ve been fighting a long time. Appreciate the well wishes and the support. 🙂
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Send Sunshine said:
Always! 🙂
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nataliescarberry said:
I’m lifting up spiritually and laying you at the feet of Jesus’ cross. And Lord I pray that you would touch this woman with your loving, healing hands and in so doing relieve her pain andrestore her heath and wholenes. I ask these things in the name of Jesus Christ! ❤ 🙂
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annepm2015 said:
Thank you – I appreciate your support. I love the prayer too. 🙂
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bowmanauthor said:
No pity, just empathy. I have had SLE Lupus and RA for many years. Today wasn’t my day either. Immune system is inflaming my heart. Docs started tests yesterday and it will continue through the week. So exhausting. I do hate to see a young woman like you have to deal with these issues as I have done for 25 years. It always leaves you a little off-kilt about the future. Prayer is the strongest route to healing. I offer my blessings and prayers. Do keep us informed how you are. We are sisters bonding through the Lord to help one of our own.
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annepm2015 said:
Thank you. I needed to hear this tonight. I knew there was something that spiked my interest in your blog and posts. We share a similar illness. Mine is very similar to Lupus too. Although my blood tests do not reflect RA, my joints ache and hurt consistently. You will be in my prayers too. Very much appreciated your comments and someone who understands a chronic health issue. I shared my story today in bible study group. Anne 🙂
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bowmanauthor said:
Any and all inflammatory/immune deficiency diseases cause pain, stiffness, and lethargy at any age, even sadly in children. I’m sure you’ve done your research…enough to know these chronic conditions are not understood very well by medical researchers. So we’re still dealing with the trial-and-error approach in medicine. I’m so glad you reached out on your blog and to your church today. Support and being able to talk about it is very important. Families don’t always understand. God is always listening and He never gives us more than we can handle, even though He does push us to the edge. Everyone I have met with these predominantly “women” diseases are amazing and strong. I can see and feel that energy in you, but allow yourself to lean on other loving supporters to keep your strength at max capacity.
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curtisbausse said:
You have a right to vent despair, especially if it makes you feel better. All the best.
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annepm2015 said:
Thank you so much. I feel you have to get that negative thinking out, although people don’t always like the result. This has been a challenge and a battle. I continue to fight it. 🙂
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Amina Berg said:
No pity, just my sincere sympathi and best wishes on your journey.
Writing is a great tool to letting go of bad emotions. Don’t appoligize for throwing yourself a “pity-party”, it’s what you do afterwards that counts.
Good luck! 🙂
A.B.
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annepm2015 said:
Yes, I agree, that’s it venting bad emotions. I was sort of angry at first, then a little sad and now getting back to normal ‘self.’ Needed a little time to take all this in at one time and focus on the future. Thank you for the response. 🙂
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jdanielverdin said:
My Dad has an auto immune disease. He went through all kinds of new medicines. They were all rough. Honestly, it was rough on all of us… But we got through. They, the doctors, did find a series of meds that work for my Dad. He is doing alright.
It gets better. I’ll pray for you.
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annepm2015 said:
Thanks for your response. That’s encouraging and I hope your Dad feels much better these days. Can you tell me what he is taking? My doctor prescribed Pyridostigmine to improve muscle strength and endurance. I’ve started to feel a little better than a couple of days ago. Your prayers are much appreciated. I will pray for your Dad. 🙂
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jdanielverdin said:
I can ask him.
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garym6059 said:
I’m sorry for your pain, prayers from Indiana. I have a very close friend that suffers from Lupus so I see the toll a chronic condition has on a person. Stay positive and never apologize for needing to vent. Anyone with an understanding for what you are going through will understand and not see it as a “pity party”
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Cousin Betty said:
Love you, Cousin. Lifting you up in prayers today!
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annepm2015 said:
Thank you Betty and everyone who are praying.
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singhpiyush6089 said:
Take care of yourself! My prayers for you!
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annepm2015 said:
Thank you.
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http://theenglishprofessoratlarge.com said:
You have every right to vent. I send you prayers for pain relief, both physical and mental. Please rest on the healing thoughts and let your body and mind absorb them.
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annepm2015 said:
Thank you. Very wise words. 🙂
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creakingbones said:
I admire your positive attitude. You rise above adversity and your writing makes for compelling reading. I was having a bit of whinge to a mate of mine recently and he simply said,’ mate, growing older is not for sissys’. How right he is.
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annepm2015 said:
Thank you. Such a nice compliment. Your mate sounds like a wise man. 🙂
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Divorce With Me said:
You have all the right to vent and share with your buds here. You are incredibly strong and positive! I would never have known you suffered as you do. I wish you the best of luck as you battle this disease. You overcame cancer; you can do ANYTHING! xoxoxo
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annepm2015 said:
Thank you. I needed that and you are right. Now, when are we going to see that handsome beau of yours? lol xoxo
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robertmgoldstein said:
A genuine expression of pain is not a pity party–it sounds like you have been fighting the good fight against a some powerful odds. That is courage. And it takes even more courage to admit that at times you feel defeated.
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annepm2015 said:
Thank you. I have had 3 life-threatening illnesses in a short period of time four years ago. I still struggle with chronic health issues. Thanks for the post and the following. I enjoyed visiting and reading your blog. 🙂
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robertmgoldstein said:
Thank you!
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Janice Wald said:
Hi am so sorry to hear you’ve been sick. I follow this link over from my meet and greet. I wanted to see your response to Jason Cushman’s challenge. Perhaps you can send me the link. When you participated in his challenge did he re-blog what you wrote? Thank you.
Janice
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annepm2015 said:
Janice, I don’t think he did. At least he didn’t tell me and I didn’t receive an email from him. The link is https://annermurray.wordpress.com/2015/03/19/harsh-reality-challenge-2/ Thanks for visiting my blog and the post.
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Janice Wald said:
You would have gotten a ping back & been notified that way. Thanks for The link I’ll check it out. Thanks also by the way for all your support of my writing Janice
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annepm2015 said:
You’re welcome.
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Opinionated Man said:
Reblogged this on HarsH ReaLiTy and commented:
You have my thoughts. -OM
Note: Comments disabled here, please visit their post.
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rgemom said:
Sometimes it actually helps to vent, let it all out, then dig in and go on. My thoughts and prayers are with you.
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annepm2015 said:
Thanks. 🙂 I appreciate that. Good advice and I am moving on, no matter what comes my way.
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Erica Herd said:
I’m sorry for what you’re going through.
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annepm2015 said:
Thanks. Unfortunately, I’ve learned to live with it.
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gh0stpupp3t said:
I’ll pray for you.
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annepm2015 said:
Thanks very much.
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grannyK said:
Sending some positive vibes your way. I hope things improve.
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annepm2015 said:
Thank you. Very sweet. 🙂
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partandparcel2014 said:
Hang in there dear..
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annepm2015 said:
Thank you, I will. Life is never a dull moment at this point. 🙂
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partandparcel2014 said:
You can always vent out and express to us all. God bless you!!!
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Carol said:
You are in my thoughts and prayers! May God continue to bless you and give you the strength to continue to fight this disease.
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annepm2015 said:
Thank you. That is so sweet and special. I appreciate the prayers and good thoughts. 🙂
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lbeth1950 said:
I hope tomorrow is better. Sometimes you just need to know someone cares when you are having a rough time. I feel for you.
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annepm2015 said:
Thank you. So sweet. It get worse everyday this week. Today they called to up my dosages on infusions. Thanks again for the encouragement. Tomorrow should be a better day. 🙂
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lbeth1950 said:
Maybe it will turnaround.
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PaulXylinides, May the mermaids sing to you ... said:
Dr.Perlmutter, Neurologist – The Grain Brain – diet aimed at prevention and treatment of neurodegenerative disorders. Latest research. Best.
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annepm2015 said:
Thanks for replying. Mine is an autoimmune caused from breast cancer four years ago.
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PaulXylinides, May the mermaids sing to you ... said:
If I might quote from the introduction – the book traces most of human illnesses including cancers to inflammatory conditions and what produces these- what you describe would seem to be included. Hope this isn’t too much for you. Best regards.
“Drawing on decades of clinical and laboratory studies (including my own), as well as extraordinary results I’ve seen over the past thirty-odd years in my practices, I’ll tell you what we know and how we can take advantage of this knowledge. I’ll also offer a complete action plan to transform your cognitive health and add more vibrant years to your life. And the benefits don’t stop at bran health. I can promise that this program can help any of the following:
ADHD
anxiety and chronic stress
depression
diabetes
epilepsy
focus and concentration problems
inflammatory conditions and disease, including arthritis
insomnia
intestinal problems, including celiac diseases, gluten sensitivity and irritable bowl
Precursors to Alzheimer’s disease
mood disorder
overweight and obesity
Tourette’s
and much more
… I’ve seen dramatic turnarounds in health, such as the 23 year old man whose crippling tremors vanished after a few easy changes to his diet, and the countless case studies of epileptic patients whose seizures ended the day they replaced grains with more fats and proteins. Or the 30 something woman who experienced an extraordinary transformation in her health after suffering from a litany of medical challenges. Before coming to see me, she not only experienced crushing migraines, depression, and infertility, but also had a rare condition called dystonia that contorted her muscles and nearly incapacitated her. Thanks to a few simple dietary tweaks, she allowed her body and brain to recover back to perfect health … and a perfect pregnancy.”
Feel free to contact me – I have a pdf of the book if you wish it.
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annepm2015 said:
Thanks. I appreciate all the information. 🙂
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Ellen Hawley said:
No pity, but I send as much strength and as many good wishes as I can fit in a comment box.
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annepm2015 said:
Thanks. I appreciate it so much. 🙂
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fantasticbetty2014 said:
I am sure many days are incredibly difficult for you. Keep pressing on, rest when you need to, cry when you want to, look for the positive in every day. Trust God for everything – with prayers for you.
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annepm2015 said:
Thanks so much. Very sweet and I appreciate the prayers. 🙂
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Fay R Kesby said:
I know what it’s like to have hope and then find that all the ‘answer’ is are more drugs and more waiting. You mentioned in a comment that you were almost in tears going to bible study – I had bad news from the hospital once and pitched a full hysterical fit IN WORK, so at least you seem to have better control of yourself than me! Hope the new drugs help and things start to improve soon.
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annepm2015 said:
Thanks for the response. It is comforting to know someone understands. I was on the way to bible study and really depressed about the day before. At least, I had the support of the group to vent. Thanks again for the well-wishes. Things are slowly starting to settle down. 🙂
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annepm2015 said:
Thanks for the response. It is comforting to know someone understands. I was on the way to bible study and really depressed about the day before. At least, I had the support of the group to vent. Thanks again for the well-wishes. Things are slowly starting to settle down. 🙂
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Madam_W said:
Oh no, my thoughts are with you. This sucks, but keep fighting! Hoping things will get better.
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annepm2015 said:
Thanks. 🙂
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annascuisine said:
There is nothing impossible with God as long as you believe. Sending prayers your way. Best wishes to you.
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annepm2015 said:
Thanks and so true! Appreciate your prayers and well-wishes. 🙂
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Poundbury Editorial Solutions said:
Hi
Firstly, thank you for the follow, it’s really appreciated. Secondly, if you are having a bad/painful day, vent and rage until you feel it is out of your system. The psychological side of a longterm illness is often overlooked. Stay well
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annepm2015 said:
Thank you! 🙂
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Lisa Ancona-Roach said:
Sorry for your difficult news…chronic illness can not only knock the body down, but also the spirit. I hope you feel better soon in both ways. Thanks for the follow, I’ve reciprocated.
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annepm2015 said:
Thank you Lisa and for the follow. I’m feeling good today. 🙂
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isathreadsoflife said:
Thank you so much for visiting my blog. On April 16 you wrote “I’m feeling good today”, I can only hope it is the same today, April 29. You are a courageous person, I also find that writing down about one’s illness is helpful. As if the burden is less heavy on one’s heart. I send you many positive thoughts, the early morning sun rays and the promise of a lovely Spring day.Thinking of you and wishing you the “bestest” 🙂
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annepm2015 said:
Thanks so much. It’s actually raining here this morning but I’m feeling good. You are welcome and look forward to reading more of your posts. 🙂
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Léa said:
Still looking! I’ve found other posts but not a single poem… 🙂
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annepm2015 said:
Lea, I added my Categories on the left hand side Widget bottom of page. If you use dropbox to “Poetry” it should reflect some of my poems. Most were written a couple of months before. Hope that helps.
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Léa said:
I will try it. Merci beaucoup!
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annepm2015 said:
You are welcome. I added two poems today. A reminder that I hadn’t posted poems in a while. 🙂
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Léa said:
Thank you!
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sereneartiste said:
That really sucks.
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sereneartiste said:
I hope you get better soon and I will pray for you.
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annepm2015 said:
Thanks.
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sereneartiste said:
I saw harsh reality and thought I was talking to Jason when I sent that first message. I didn’t mean to be mean or uncaring. I apologize if it offended you. I really do hope you get better. I can’t imagine what you are going through.
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annepm2015 said:
You aren’t the first person to say that. I think I need to change heading – less confusing that way. You didn’t offend me. I;m just really frustrated with treatments right now! Thank you for your kind words. 🙂
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