I'm taking a few moments to reflect back on this journey of mine, with this ugly disease.
First and foremost, I have the most awesome husband and kids in the world. Thank you, Gary for always taking care of me! Jennifer, Justin, Lauren and Kent, you are all wonderful and take my pain very seriously. You are always a huge help when you are around and even when you are not, I know you are praying for your mama. Words cannot describe how much I love you all.
2nd, I am very tired of doctors. Neurosurgeons especially. If I had one wish, it would be for neurosurgeons to think outside the box and believe those people who really hurt and I don't know, maybe listen to them. The only one I trust is Dr. Feigenbaum. I have learned that there are so, so many people out there hurting, there needs to be someone who will listen to them. My disease seems mild, compared to others I have read about.
3rd, this disease is a life changing event. I never thought I would be someone who is considered disabled, but now I am. Because of this disease, I had to retire with disability. I was very lucky to have been able to collect full benefits. I haven't been able to travel. Just to go shopping I have to lay down in the backseat of my truck, so I'm not hurting when I get to where I need to be. My hobbies have been placed on hold. Here I am retired and I cannot enjoy my hobbies.
4th, we have our first grand child coming in December. A little girl. I am bound and determined to get better for her, because this grandma will do anything it takes to be able to spoil that little girl.
Hi Karen,
ReplyDeleteI just read this post and I have to say, you're one lucky woman! I, like you, am so very grateful for the support I've received from my family, but unfortunately some of them either just don't get it, or just don't give a damn. Sad to say, but very true.
I also know, as I'm sure do you, that other patients constantly struggle for understanding and compassion from those who should have been first in line to help and care.
Here's a question? if we can't get the people we love, who also love us in return, to truly understand our disease and our suffering, then how can we expect those who don't know us to understand?
I personally think that's one of the biggest issues with this disease; social exposure and understanding. We've accomplished a lot on our own journey's by sharing, but we've still got so far to go.
I think everytime you, I or anyone else shares their experiences, online or anywhere else, we're spreading the news and advancing social knowledge. Seeing as we often don't wear our disease on our sleeve, we have to fight and work hard for every piece of attention we can possibly get.
Unlike many devastating diseases, people can't see our pain. We look healthy except for maybe a limp. We're often overweight thanks to medications and our inability to move, let alone exercise, and we're mostly stuck at home suffering in silence, instead of walking around carrying a rare disease poster in our hands. We live with a silent disease, who's voice is mostly heard through social networking sites like yours. All too often that's all we have left. It's our only consistent way to connect to the world outside.
I read the part about you how your condition seems mild compared to others you've read about. I thought that about my own condition, but I don't believe that anymore. I learned the hard way, that I personally am in hard shape. I think others who saw me thought I was in great condition, but as I spent longer periods of time with other patients I realized I'm only good for the short spurts. The long visits kill me! My mobility is great as long as it's for short periods, but then I need to hide, which makes it hard to move our of my comfort zone of home.
Thanks to that realization, and me admitting it publicly I now have a wheelchair for the longer trips. Without it I might as well just stay home.
So believe me when I say, what we read or hear, and what we see of other patients, when compared to our own condition, is often based in our own understanding of, "what is my pain?" Not how much of it you actually have.
We all have different pain levels, different pain thresholds and different medications that allow us to do more than perhaps the patient next door. I know I wanted to believe I was better off than most, and I pray you are better off than I, but don't ever diminish your own suffering by comparing to another. Pain is pain, and none of us deserve it.
Congratulations on the wonderful gift of becomming a Grandmother! I am too. I have a three year old grandson and its been rough, but totally worth it. My Grandson Khellen and I have found our little special ways of being together and having wonderful times that we'll both always remember. It's easy to play Angry Birds laying down! lol And he's come to think of my walker as his own private limo. Now my electric wheelchair has his favorite horn! Yes, it actually has a horn, and Khellen thinks it's his.. lol
There are so many ways to be a Grandmother and share our gifts with our little gift from God, and I know you'll discover your own ways of making it happen too. Try not to worry about what might be, make what is the best it can be. It's a wonderful experience!
I'm so grateful for Khellen, he's given me so many other reasons that make it well worth fighting this disease for.
Congrats!!! Love your blog by the way.... let's link?
Sherri
Hello House..I'm Jessica Lennon from the United States.I'm here to bring good news to any one with different health challenges especially breast cancer or any types of cancer at all.Dr. James is an Herbal Healthcare Nutritionist who specialise in treating Cancer patients with his herbal mix medicine over the years from my research in finding out a cure to my breast cancer I came across Dr. James who personally told me that those who live on Chemotherapy DIE faster than those who decide to go the other way and stick to it, Dr. James made me to understands that many out of confusion and shock of the disease take chemo and he reminded me that if chemo cannot create a permanent solution then i should forget it,because it's not worth it,Dr James break it down for me to know The power of chemo kills both the healthy cells and the unhealthy cells thereby damaging the system the more,Dr. James herbal mix medicine for cancer patients is purely organic food,herbs and roots extracts from a strong medical plants.Dr. james cured my breast cancer and made me to live a healthy live without Chemotherapy.but the use of his herbal mix medicine was effective and I was cured just in the space of 3 months
ReplyDeleteDr.James uses 4 stages and a strategic plan which he calls his formula in bringing cure to the disease called Cancer
STAGE 1------He Guarantee 3months of aggressive plan
STAGE 2-------He guarantee 5-8month of aggressive Plan.
STAGE 3------He guarantees 6-8months of total cure.
STAGE 4------He guarantees 6-12months of Total cure.
For the Solution to come you should have a full orientation of what you are going into.In most cases some early stage has even been cured just in the space of 3MONTHS,Just as I was cured.Brothers and Sisters if you know someone with these diseases COLORECTAL CANCER,Brain cancer,Esophageal cancer,Gallbladder cancer,Gestational trophoblastic disease,Head and neck cancer, BLADDER CANCER, PROSTATE CANCER, KIDNEY CANCER, LUNG CANCER, Lupus,SKIN CANCER,Glaucoma., Cataracts,Macular degeneration,Cardiovascular disease,Lung disease.Enlarged prostate,Osteoporosis.Alzheimer's disease,Ovarian cancer,Sinus cancer,Skin cancer,Soft tissue sarcoma,Spinal cancer,Stomach cancer,Testicular cancer,Throat cancer,Thyroid Cancer,Stroke,Dementia. UTERINE CANCER,Pancreatic Cancer, LEUKEMIA,HIV/AIDS,OVARIAN CANCER,BLOOD CANCER,Vulvar cancer,MEN/WOMAN INFERTILITY,BURKITT LYMPHOMA - NON-HODGKIN.BRONCHIAL TUMORS, BRAIN TUMORS,BILE DUCT CANCER,BONE CANCER,VAGINAL CANCER,Cervical Cancer,HERPES VIRUS, please and please do not hesitate to contact
Dr.James on his Email at (Drjamesherbalmix@gmail.com) to save lives.Thank you.