posted
I know we have had lengthy discussions on the board before about cancer patients and other well supported diseases getting all the sympathy and help.
Just feel like I need to get it out of my system by sharing.
A lady in a group I go is going through chemo. Predicting one round and she will be 'cured'. We/I know that it is a dice game with cancer. I have much empathy for her and what she is going through.
I am also jealous of all the understanding and sympathy she gets! I am on a form of 'chemotherapy' as well. Every week my body is dealing with massive die-off from antibiotics, trying to kill a freaking bacteria that will maybe, just maybe, put me into a remission state.
In the mean while, I feel like crap, this woman feels like crap and she gets empathy, sympathy and lots of kindness and all the support she wants from different professional entities, people around her, ect.
It's so unfair!
Okay, I'm done. For now. I think.
Thanks for letting me vent.
Edessa
Big sigh
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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posted
We hear you loud and clear! No one gets it but us.
It's really pretty crazy.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
We understand EXACTLY what you are talking about!!
Posts: 2251 | From USA | Registered: Aug 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
If I see another FB post about someone with cancer I will need anti-nausea meds. And every other post is about a kid who needs 10000000000 likes because he beat cancer. I don't begrudge anyone or any kid who had/has cancer. But give me a break. I am TIRED of seeing it all.
I have an adult child who has been battling this Chronic Lyme beast for years. You want to see suffering? Courage? Determination? Perseverance? Dignity? Grace? That would be her. And she manages to keep "herself" her true self, in the face of ignorant doctors and educators who opted to ridicule and mock and minimize this awful disease and what it has taken from her. Of course, we haven't tolerated any of that nonsense for years, but most certainly, those memories cannot be forgotten.
Oh, and no one did our food shopping, cooked our meals, drove us to our appointments, provided financial support, held our hands, cried with us, yadda yadda yadda. That was MY job, with me being sick myself. So imagine how much sympathy I have for people whose basic needs are being taken care of.
It is amazing to me just how huge the cancer machine has become. It has been a multi-billion dollar industry for decades and just keeps growing. And sheeple still think if they walk, run, or participate in other group activities to raise money, a "cure" will be found. There will never be a cure for cancer. It is too lucrative an industry.
And recently more articles have been published about "stage 0" breast cancer and how it is not/might not be cancer at all. Yet, more patients are being created because of it ("the machine").
And articles are being published about the dangers of routine mammography. Aside from the procedure being downright barbaric, in what reality is it appropriate to expose delicate breast tissue to radiation year after year, especially when alternatives like ultrasound and MRI are available?
Posts: 1885 | From here | Registered: Jul 2012
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posted
I just want to send out my sympathy to you on this. It's so hard to have a disease that no one understands.
One of my closet friends is battling her second breast cancer and everyone is throwing her a yard sale benefit this morning to raise money to help her pay for treatment. I helped organize it, however, I am too sick to participate.
Only my family and husband understand what I am going through. My friends don't come around. There isn't a day that goes by that I don't say 'how is this happening???'
How is it that we have a disease that is not only unrecognized by mainstream medicine, but is also unrecognized culturally? This disease already causes horrible depression and anxiety without adding the isolation and exile from society and medicine.
I don't know what it's going to take. I am so sorry that anyone has to go through this. I wish each and everyone of you the strength and courage to keep going with treatment.
I personally know several people that are 100% well from treating Lyme. I know we can be, too.
Posts: 24 | From Nashville, TN | Registered: Aug 2015
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LabRat
Frequent Contributor (1K+ posts)
Member # 78
posted
Edessa, your post brought a smile to my face. I felt the same, I just shortened it to "why me"!
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000
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I have been given notices for the past 4 years about having a mammogram. And I have turned each recommendation down.
I have decided that breast cancer is low on my totem pole of concerns and not worth the risk of emotional turmoil or even more radiation to my body.
The screening process for breast cancer is just as good as those for Lyme is seems.
Grrrr!
Thank you for all the replies, it is always comforting to know what you say is being understood and empathized with.
Hugs,
Edessa
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
great! I had that mystery "could be" cancer scare this past year and had tons of mammos to check it out plus invasive biopsy.... I wish I would have known better then. now I have two strange moles on that breast all of a sudden. one is dark blue and the other is right next to it and brown.
I am trying to ignore the moles. if I have cancer now I know they probably gave it to me- whether the moles mean something or not.
and you are right. no one cares about tick disease sufferers.
reading your post on a day when I feel particularily mad about this issue helps me feel validated. thanks.
and I was just htinking this morning how no one helps me. and wondering if I should bother even helping others any more. just close myself off totally. from "them" that don't get it.
I am not one to hold grudges or stay mad at anyone, but this is taking me to a different place. I don't like this person I am when I feel this way, but why is it so uneven?? so unfair? I actually think often that if I die then they will all know. and cry for me. I know that is so selfish and dumb. but it's that little girl in me stomping her foot with her arms folded across her chest with that pouty face.
she is very unhappy in there.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I am really new to all of this, having just found out that I have Lyme and starting Doxy about 3 weeks ago.
My first week on Doxy, I couldn't move. I was much worse than even before the Doxy.
I had pretty much every symptom of Lyme that I have come across, including losing my hair, which has resulted in a nice little bald spot on the back of my head.
My hubby (were not technically married but we've lived together for 5 years and own 2 business together so we live a married life) has now had the house, business, kids, groceries, meals, etc. to handle all by himself!
I have been thinking this exact same thing! Why is it that Lyme is so ignored? I actually look like a cancer patient at the moment with my pale skin since I can't go in the sun and bald spots!
If I had actually had cancer my hubby would have so many volunteers offering to help him out, but its Lyme so that'll never happen.
If we want help we need to get it ourselves and hire people. I actually thought about this, but since my upcoming appointment with the LLMD will cost over $1000 I realized its not a total necessity.
If we want support we might as well tell people we have cancer...I certainly look the part!
Posts: 66 | From New York | Registered: Sep 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
one thing I would do different if I ever get a s bad as I was last year would be to have my husband actually call my siblings and tell them what is happeneing and ask for help.
trying to keep it all a personal thing last time was dumb- for my situation anyway.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
LisaK, yeah I've been keeping it personal also. Its hard because people that don't know about Lyme don't take it seriously. But maybe telling people would be a good thing.
Posts: 66 | From New York | Registered: Sep 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
well, I am not sure I would mention lyme or ticks so much any more. I would focus more on the actual handicap- like not being able to cook, or clean, laundry, food shop, etc.
some people I am sure then say within their group, "she has kids, why can't they do this for her!", and yes they are right, but when all your energy takes you to just parentally remind your teen to take out the trash, it's easier to let someone else who offeres do it, really. than to have another battle that stresses you out or turns into a screaming fight.
honestly, by the time my infected husband and son get home from school/work they are so drained- like zombies- that they don't have it in them to do much of anything I am afraid.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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