posted
Hi everyone...I spent time with my father yesterday evening. He was wonderful as always but then we were in the middle of talking and he got silent. I asked him what was on his mind and he told me that he is afraid that I am going to die and that "I cannot take losing you..you are all I have in the world."
I was too stunned to say anything and so I just hugged him . I do think I should talk about this more with him though. I want to reassure him that I do not think I will die. I truly am scared to death all the time but I do not think this illness will kill me...my greatest fear is that it will just keep me ill indefinitely but I do not think lyme will be the death of me.
How do I reassure my father that I will not perish from this? I think my frail physical appearance is motivating a lot of this too. If I were 30 lbs heavier I do not think he would be talking this way. But until I gain weight, does anyone have any advice as to how to reassure my father? This is really weighing heavily on my heart. Thanks in advance. Jess
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- Jess,
In all kindness, it may be most helpful to acknowledge that your father's fears are well grounded,
given your situation with malnourishment from gastroparesis (under 90 pounds may not be as important as the amount of nutrients your body gets each day, or doesn't get) - and lyme, etc.
Some do die. That's just the truth. It's a sober truth. Just thinking we won't be one of those may not be of help for others to hear.
We all have to face that we will die someday, some sooner than others. Even with treatment, not everyone makes it. The body can take only so much.
I think the best you can do to reassure him is that you are doing the best you can each hour, with the resources and professional guidance available to you.
Doing the math, be sure that you get all the calories, all the nutrients your cells require - each hour. This will help reassure him. Somehow, you have to clock the calories from the most healthful choice - and nutrients that go with them. Powdered greens, etc. can fill in the gaps.
You mention weight in every post, understandably. But it not so much about the weight as the nutrition. Focus on nutrition.
I know you are on TPN and also eating some foods (but not really getting all your body requires, as you have written in your previous posts).
Right now, your life comes down to your nutrition. Without it, a body will die.
Lacking in nutrients, no one can tolerate or succeed with lyme treatment, really. Your body has to have the strength to manage treatment.
Beyond being sure you never miss a beat with nutrition, all you can say is that you love him, you are doing the best you can and you can all hope for the very best but know that, whatever comes, you would hope that others could continue on without us, continue to somehow embrace what beauty they could.
Because no one knows what's ahead, talk now about your love, your delights and find out his. Get to know as much about each other as possible. That's a very valuable gift that others can carry with them whether we are around or not.
We have to let our loves know that we'd want them to carry on were we to be gone. We have to be strong for them. Still, it's okay to be totally open and honest. Feelings can be messy but are well worth sharing.
Just think through beforehand how your father might react or feel with certain things you might say.
A good LL therapist could help you with all this in many ways. I hope you have one near you. Your LLMD should have some names.
Not just to help you figure out how to talk to your Dad right now but how to process all YOUR emotions, your options, possiblities.
You need someone to talk to about all this. Someone who can be neutral but also understanding. -
[ 02-01-2013, 04:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To be aware of what lyme can do to anyone - and honor those whose lives have been cut short by tick-borne disease: ------------
Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I guess all I can hope for is that I will somehow pull through. Thanks so much for the advice Keebler...this is really scary stuff, and I cannot take how worried I am making everyone around me. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- Rather than worry, just do what you can. Enjoy what you can. Worry will not help you or those around you.
Action helps. And knowing when to "be" in the moment. I know that seems hard but worry is toxic, very toxic. Avoid it at all costs.
Worry is also a sludge that is slung onto others. It may help to think of it that way.
See if you can shift that negative energy to an energy of positive mindfulness - and the action to just cover all your basics. Food. Water. Rest. Move on from there.
It's natural to have all kinds of emotions around this. I'm not sure you are getting the right kind of nutrition counseling to begin with but if you found the right kind of LL gastroparesis counselor, surely they would also be able to counsel some around the emotions of all this.
Perserve to find the correct nutrition counselor. THAT will help ease everyone's concerns. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You and your dad need encouragement. I'm so sorry your having to have these conversations with your father. He sounds like a very sweet man. Bless his heart.
I will be praying for both you and your father. I pray for his peace of mind and for your body's strength and health.
Posts: 415 | From USA | Registered: Jun 2012
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posted
Thanks Messa....he is a really sweet man and has been both mother AND father to me practically my whole life.
I do not know what to tell him. He sees me and he cries and cries and kisses my hands and tells me I am "his miracle" and that he cannot lose me.
I just do not want him to worry so much. It breaks my heart into little pieces. Thanks again for the wonderfully kind response. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Yes, he seems to be especially concerned lately and it really pains me so much to see him so worried and to know that I am the cause of his angst.
I am glas that you have your mom. I cannot imagine life without my dad in it. He is the best person I have ever known . Thanks again. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Jess, it may be helpful to tell your Dad that his expressed worry to you causes you to worry which is not helpful for your condition.
Explain to him that it takes away emotional resources you need to fight. Say to him, "Dad I know you are worried but you need to find someone else to talk to about it so when you are around me you can just be encouraging and positive."
That may help everyone in the long run.
Posts: 538 | From kentucky | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- SoccerMama has a good point about other's negative emotions and worries affecting you. I'm afraid if you silence your Dad's feelings it will make him feel closed off. What about shifting the focus. From worry to empowerment for all involved?
Your father's worry about this is understandable and he does speak a truth that needs to be stated - and heard - and considered (given detail in your past posts).
You want to have an adult relationship with him and that includes safety and honesty in conversation, both ways.
If the situation were reversed, I'm sure you would not want to be dismissed by him.
Acknowledge his love and concern - and even his worry- the part that is reasonable. Just take it for a "walk" (so to speak) and turn it into positive action.
Make a game for yourself and all around you to be able to freely state a concern but if it's a "downer" challenge yourself and others how that can be turned around, prompting positive. It could bring a few laughs and deeper connections.
Rather than just stand, watch and worry, others can feel empowered, too.
He can help you find recipes that might work for you - or other things - brainstorm, make if fun if possible.
You are worried you may not make it. This author had very similar experiences regarding the gastroparesis that you've described.
Is there any hope that my Gastroparesis will improve over time?
GP is a dynamic condition. It doesn't often stay the same over time.
I'm 10 times better now than I was two years ago (thanks to the gastric neurostimulator, really good nutrition, careful dietary choices, lots of physical activity and stress management).
[poster's interjection: with lyme, "lots of physical activity" has to be modified to non-aerobic and what is best for each person.]
Though it doesn't happen for everyone, I've worked with many people who have gotten better over time.
Also, a well-balanced management plan, one that includes medical and complimentary therapy AND dietary modifications AND lifestyle practices, can make a big difference. Just one isn't usually enough.
The key is to educate yourself and be proactive and keep your attitude as positive as possible (that matters, too -- it really does!).
(end excerpt) -
[ 02-24-2013, 02:59 PM: Message edited by: Keebler ]
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
Yes, it is very possible that this condition could cause your death. People with anorexia sometimes die of a heart attack, because of mineral deficiencies that cause abnormal heart rhythms.
You may be too young to remember Karen Carpenter. I listened to her music on the radio when I was in high school and college, she had a beautiful voice. She had anorexia for many years, and died suddenly of a heart attack. http://en.wikipedia.org/wiki/Karen_Carpenter
I doubt that you want to hear this, but you are reaching a tipping point in your health. It is normal to be in denial when things are not going well. Hah, I find denial a great way to cope.
Accepting the possiblity of death doesn't mean that you're resigned to it. Being aware of it means you can make plans.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Well hopefully I won't die, as I am on TPN and am forcing myself to eat. Thanks. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
The loss of Karen Carpenter still saddens me to this day. What a great singer.
Jess, keep eating.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
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posted
Oh good God. Can we just remember that this a young woman in her early 30s who is working, recently engaged and planning a wedding??
She just happens to be fighting for her health against this damn disease and is dealing with her dad who is naturally very worried about her.
I just don't think Jessica needs all the Debbie Downers here. Who the hell wants to think about death and demise when planning a future with someone you love? Heck, a healthy person could just get hit by a bus and that's that.
Comparing Jessica to Karen Carpenter is just unfair and out of bounds, IMO. KC did not have (as far as I know) gastroparesis due to tick-borne disease. She had anorexia nervosa, period.
So Jessica, my advice to you is to ignore some comments above and live your life and enjoy every single minute with your guy.
And screw that whole death thing. Don't think about it for another minute. Continue with the TPN indefinitely and eat what and when you can and make it your mission to explore ways for you to overcome the gastroparesis and put weight on.
You can do this.
Posts: 1885 | From here | Registered: Jul 2012
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posted
THANK YOU BEACHES....these comments have been so depressing to me and the Karen Carpenter stuff is SO UNFAIR...I am not deliberately starving myself and taking laxatives and purgatives like that woman did.
I really have been so upset by all of the comments but am too polite to say anything. Thanks again so much..I so needed to see this tonight. XOXOXO Jess
Posts: 870 | From ct | Registered: Nov 2012
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Seriously Beaches....THANK YOU THANK YOU THANK YOU. I cannot state it enough. I am too sleepy right now to PM you but I surely will tmrw. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
And saying I am in denial? How about I live in a terribly ill body every day? I am not in denial about the severity of my condition but I refuse to believe this **** will kill me. That is my right and I have the right to hope. Jess.
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beaches
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posted
The KC stuff is very unfair and inappropriate IMO. I am at a loss for some of the comments here. They are depressing to ME and I can't imagine how you've taken them. So let's just IGNORE THEM!
I guess it's good I'm not so polite??? Hope that made you smile
XOXO back at you sweetie.
Posts: 1885 | From here | Registered: Jul 2012
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posted
Thank you so much...I read all these comments and I was stunned. I was truly depressed over it for a good day or so and the Karen Carpenter stuff is disgustingly unfair. Did Karen Carpenter vomit uncontrollably because her stomach functioned at a low percentage? Did she sit for HOURS forcing herself to eat in between bouts of sickness just to try to keep herself alive? GIVE ME A BREAK...I am many things but I am not self destructive.
I adore you. Seriously. I will PM you tmrw -sorry I was out of touch the past few weeks, the flu and crazy busy planning the wedding. XOXOXO Jess
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beaches
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posted
You are definitely not in denial!
More power to you for standing up for yourself and fighting this damn thing and staring it down every single day.
I KNOW that the single most powerful thing in overcoming adversity is a strong will (and a kick-a$$ attitude never hurts).
Jess, just keep being yourself and fight your battle with every weapon you have.
You have the right to hope, the right to believe, the right to fight.
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beaches
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posted
Jess, no need to PM me or apologize! Life happens and we get busy! If you are busy working and planning a wedding that is just wonderful!
Posts: 1885 | From here | Registered: Jul 2012
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THANK YOU!!!!! I am a fighter and I have a career I love and a fiance I love and wonderful friends and my loving father...I am not for one second going to tell myself to plan for my possible demise.
I have a very dear friend with lyme who I love more than almost anyone on the planet and he is a fighter like I am and I draw a lot of inspiration from him. We will be victorious...you cannot think otherwise. Thanks again so much Beaches...you helped me ENORMOUSLY tonight and I am eternally grateful. xo Jess
Posts: 870 | From ct | Registered: Nov 2012
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Carol in PA
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posted
Oh geez, Karen Carpenter died because of nutritional deficiencies due to inability to digest properly.
I am NOT blaming you for the gastroparesis.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
But why did she die of that? Because she engaged in willfully self destructive behaviors for years, not because she had tick borne illness. Its just an unfair comparison. And right before she died she ingested ipecac. I know all about her..my best friend almost died of an eating disorder when we were teens. Karen Carpenter and I have nothing in common. Jess.
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Carol in PA
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posted
She spent her early years in Connecticut, before moving to California.
I wonder if a tick borne infection may have caused the problems.
Beaches has a point...no one wants to think about a sudden end to things when you're planning a wonderful future. Jessica, I'm not trying to offend you and I debated whether I should say anything.
I apologize for upsetting you.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
No if you learn her life story she was called fat by her brother and record execs and had a terribly controlling mother..classic anorexia nervosa. She did not have lyme. Trust me...I studied up on her and a few other anorectics to try to understand my best friend's problem when we were teens. Karen Carpenter was mentally ill. I am physically ill. She was willfully self destructive, poor thing. I am not. Unfair comparison. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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beaches
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posted
Carol, that's a new one for me re: KC and "nutritional deficiencies" due to inability to digest properly. She died b/c she was anorexic, period. Let her rest in peace.
And let's let Jessica go on with her life. Comparing KC with Jessica is just UNFAIR and INAPPROPRIATE and I am asking people here to just stop it.
Enough already.
Posts: 1885 | From here | Registered: Jul 2012
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posted
Thank you Beaches...she did not die from an inability to digest. She died from purgative abuse and years of anorexia. RIDICULOUS comparison and a hurtful one too. Jess
Posts: 870 | From ct | Registered: Nov 2012
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beaches
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posted
Yes, Jess, KC died from anorexia and purging for years. Her illness has NOTHING to do with yours and there is NO COMPARISON.
Just keep on keepin' on and learn to press the "ignore" button in your brain.
Posts: 1885 | From here | Registered: Jul 2012
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posted
Thank you daynise!!! I so appreciate it. Jess
Posts: 870 | From ct | Registered: Nov 2012
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tickled1
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posted
Jess,
I so admire your positive attitude and love of life despite your struggles. We should all follow your example.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Tickled-that means so much to me. Thank you truly. Jess
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- I'm sure this thread is upsetting. The situation is upsetting. But please take in the points intended to help. It is not intended to be upsetting, rather empowering.
The purpose of lymenet is to educate and support. Both go hand in hand. With that education, honesty and facts go together. Support must consider the facts.
Fact: lyme can be fatal. Fact: Gastroparesis can cause nutritional defeciencies. Fact: the diagnosis of anorexia nervosa by a professional about two weeks ago should not be ignored.
For months, you've posted that your weight is around 85 - 87 pounds (I know that's not your fault but it can bring many risks that need to be considered)
It has been explained that anorexia nervosa can have many causes and complexities. The fact remains that your being under 90 pounds for many months (the weight at which KC died), puts any body at risk (if of average height).
You've chronicled for months how very little you are able to eat and the great pain it causes you - and the inabilty to hold food down.
Still, not so much about the weight as the nutrients able to feed the body. As the body is able to take in nutrients, tissue - especially MUSCLE can grow, the heart can become stronger.
So that we can balance and minimize the risks, it's important to look at them, along with the positives.
Positive: you are being treated by a LLMD.
Positive: You are also receiving TPN - IV nutrients twice daily for 1.5 hours each time.
Positive: You are reaching out for help.
Risk: wanting only to hear that all will be fine and you are not at risk
Risk: equating "risk" with your demise rather than as a warning signal. Equating "risk" as your having no power to steer the course.
Positive: you ARE doing what you can and holding onto HOPE
Risk: lack of professional guidance and counsel on practical levels and emotional. A profession who can see you in person, regularly and offer support in detail to your situation.
It's great to have LymeNet as a forum and, in many threads, you've received some practical hints for foods that may work for you.
You've also received some nice emotional support.
But it's not good brushing off information that is paramont to the events you describe more than once of this loved one or another telling you they are seriously concerned that your life is at risk.
That is a fact at this point, based on information you've posted for weeks.
Comparing this case to Karen Carpenter can help in that as some point out, she "had anorexia nervosa, period." HOW or WHY is not as important as the end point: her cells did not get the nutrients required. Her heart gave out.
Carol says: "Karen Carpenter died because of nutritional deficiencies due to inability to digest properly.
I am NOT blaming you for the gastroparesis." (end quote)
The point in that the anorexia nervosa has to be faced, too, along with the reasons why in this case: lyme; gastroparesis.
You've mentioned many times that food often makes you vomit.
The TPN doctor has just told you to eat all you can. But that can be misinterpreted and dangerous if you don't have the right professional guidance.
The counselor who two week ago diagnosed you with anorexia, while not LL and seemingly unaware of the gastropareris issues, might still be able to offer you guidance in some ways.
If not, please find someone who will. It's not just about eating all you can (which still can be exceedly low in nutrient total) -
- if you still feel so ill when you eat - professional guidance if vital so that the particulars can be adjusted. The current mode of operation is not working.
You deserve someone - in person - trained - to help in this very complex matter. The "Living with Gastroparesis" book and blog still seem great resources to help but real - in person - guidance is best. I hope you can find that.
In many previous threads, ideas for how to find that professional have been suggested. I hope all those ideas will help. Sincerely.
This is not about fear. It's about facing the facts, weighing the pros and cons - and then facing them - with as much enthusiasm as we can - with as much hope. Because there is always hope.
But hope grounded in education will help us be better equipped. Then hope has the best chance to become reality. -
[ 02-04-2013, 07:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I spoke with my llmd today and he agreed that the diagnosis of anorexia nervosa was completely inappropriate in my case.
Also he told me the idea that I will die from this is "not something you should be entertaining. Your chances of dying from this are low as we are treating the underlying causes and are stabilizing you nutritionally."
I will not entertain any notions of my demise. I am getting married and going to live a happy life even if I am chronically ill. And I will not die from this illness. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
And the how and why of how Karen Carpenter had anorexia is very relevant..she chose to not eat to lose weight. I did not. She chose to vomit by taking purgatives. I did not.
To equate her willful self destruction with my blameless tick borne illness is UNFAIR and hurtful and grossly offensive. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
And thank you Carol for the apology, btw. Jess
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- The comparison was stated only in relevance to nutrients that did - or did not - reach her cells. I hope you also saw the parts that said your case is not the same in all regards yet there are things that we can still learn from her case.
I hope it was clear - that's the point made. It's about what nutrients can get to the cells, all body tissues, for strength and growth.
I do hope this gets easier for you. I see how you've struggled with the ability to take in food for so long that I sincerely hope you find a professional you can help you find a way to take in - keep - and have food be of great benefit.
Even if you can't find the right counselor, you might check out JUICING. Someone at many of the good food markets may be able to suggest the best combinations that will help your stomach feel better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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It remains an unfair comparison but I thank you very much for the kind wishes. My LLMD had a patient similar to myself and he improved on the meds that I am currently on for lyme and coinfections. I hope I will experience similar progress. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Somehow, this thread got off track. Jess posted asking help in how to deal with her father not to have a discussion about where her health is going.
Jess, I know that your father is very worried. Anyone would be. He has no control over his child's health and as a parent that is one of the worst feelings you can have.
Without going into details, trust me, I know. A parent is supposed to protect his child and your Dad is no exception.
A possible answer may be to give permission for him to talk with your LLMD that way your Dad can express his fears and have them alleviated by a knowledgeable doctor who is well versed in your condition.
Also, the doctor may be able to give some advice on how your Dad can help you.
We can't afford to be afraid. One of the best things for improving health is to not become obsessed with the lack of it...Rather to live life to its fullest given its limitations.
Jess, congrats on your engagement. Your future husband sounds wonderful. If he loves you this well during adversity, then your relationship can only get better with time.
Posts: 538 | From kentucky | Registered: Nov 2011
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I agree living in fear is like living in a cage and I cannot allow myself to live that way.
My fiance is WONDERFUL. I cannot even begin to put into words what a blessing he has been to my life. I was telling one of my dearest friends just the other day that I never knew such happiness was possible, but I have found it with him. And he is also cute as a button too .....Thanks so much Jess
Posts: 870 | From ct | Registered: Nov 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Just started reading this thread. Still in shock about some of the comments and totally agree with beaches.
Jess,
what got me through was to stay focused on living and healing and not letting in any other options other than getting well into my thoughts. Believe me when I tell you I was very, very sick.
The mantra "I AM GETTING HEALTHIER EVERY DAY IN EVERY WAY" Was in my thoughts every day no matter how bad I felt even when my LLMD told me I could die. My thoughts were "Really"? Well I'm not doing that"!!
I encourage you to do the same and to know that you will heal, get well and have a beautiful wedding! Period! You can also tell your dad the same thing and tell him you really would appreciate just positive healing thoughts.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please do not confuse suggestions to weigh the facts as being inconsistent with hope.
In any situation, we have to first size up the facts, weigh the benefits and risks, assess our strengths and weaknesses in order to maximize the strengths and minimize the weaknesses (of the case, not as a character flaw).
We have to do all that in order to develop our action plan. Without a detailed action plan, how can there be hope?
And good nutritional counseling is so very important when cells need very specific minerals, amino acids, etc. Few can do this alone regarding the issues connected with severe malnutrition.
Please, do not misinterpret suggestions to assess the situation realistically - and to find professional nutritional counsel regarding food sources and methods - as anything other than an essential step to empowerment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
No the posts were negative, Keebler. They were....perhaps it was not anyone's intent, but they were.
The posts were terribly pessimistic. Thanks again to Beaches and soccermama and tickled and daynise and gael for the positivity. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
I asked advice as to how to reassure my father. I never asked to be compared to Karen Carpenter and told that I need to acknowledge my possible demise. If my drs thought I was so close to death, I would be in the hospital. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Wow- as a former anorexic in my 20's and now a 55 year old woman with Lyme and Bartonella, among other things, I am saddened by these posts. 3 years ago at the age of 52, my weight went down to 88 pds thru no fault of my own.
I had an unrelenting fever for over 3 months and constant nausea. Then a few months after that I developed pancreatitis. When I was admitted to the hospital for that- I weighed in at 87 pds. I am 5' 3".
Being at that weight for all those months took a SEVERE toll on my body. I cannot even begin to tell you HOW many different things began to go wrong.
To the author of this post- you sound very defensive and that worries me. It does nt MATTER WHY a person gets to that low of a body weight - Keebler is just trying to help you and personally I thank her for reaching out to you.
I know it is not your "doing" or your "fault" that you cannot eat.
It is your frame of mind that is worrisome. You need to stop defending yourself and ge some adequate nutritional counseling.
I am confused- because I thought you even said awhile back, that you probably were suffering from anorexia, but were afraid to admit it on this board. I apolgize if I am wrong.
I am now at a stable 102 pds. and even with my "anorexia past" - I still feel "fat" (yes I do)but I am in therapy- I don't deny my fears about weight issues and I instead try every single day to make sure my body gets what it NEEDS to fight these horrible disease, as best I can.
All this truly is said in Love.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
Keebler I suggest you reread your comments...they were incredibly pessimistic, not empowering at all. Again I know your intentions are very good, but your posts did not encourage positivity. And based on other posts here by other members, I am clearly not alone in my assessment. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Corrine-I am not in denial about my weight. I was given a diagnosis of atypical anorexia and my llmd also disputes it. I am not defensive about my weight loss. I am upset over posts telling me to plan for my possible demise and comparing me to a willfully self destructive woman.
And I have never felt fat. I have never wanted to lose weight and I have always known how thin I am and have worked very hard to try to correct it. All this is said with respect, but you do not know my situation clearly. Thanks Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
ok- I was just worried about your weight and not sure everyone else who responded knows how serious your weight issues really are. I think it is a blessing to have poeple worry and care about us. At least I know I do. I won't chime in anymore. Take care of yourself.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
Thanks corrine. Best wishes to you and you should be proud of your anorexia recovery. My best friend is a recovered anorexic and I commend you for your hard work. Jess
Posts: 870 | From ct | Registered: Nov 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I think perhaps the one thing you could do to reassure your dad is stick with the ton and even increase it. I didn't quite understand why you stopped when you did as to me that was certainly no enough time on it or enough weight gained to get you out of the danger zone. In order to fight this you need to have a few things on your side. Being at a good weight is definitely one of them,
I'm not judging you, just know if it was me I would want to do everything I could to get ,myself to a point that I am at a healthy weight. If tpn is the way to get there then so be it.
I could be off base here but sometimes we need to be shown the possibilities no matter how negative and depressing they may be to push us into action.
Posts: 1748 | From United States | Registered: Dec 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Also you frequently post about your visits with your doc and how they leave you depressed when he says things about you being so I'll, the sickest, not sure how to help you etc...I don't know how much of this you are sharing with your dad, but if you are that has got'to'be'worrying him as well.
Let's face it, if the doctor is at a loss at what to do then how comfortable could you or your father be with the treatment and how positive could either of you feel about things.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Ellen, I agree it is so hard for my dad but he and I had a talk last night and things are ok now. He is worried but he is reassured by all the proactive steps I am taking for my health. Jess
Posts: 870 | From ct | Registered: Nov 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I'm glad things are ok now. Thankfully, you are not in denial about Lyme. You know what you are dealing with and are fighting this terrible disease head on.
You seem like a very strong, resilient person...you're dad must know deep down inside that this disease has met its match, and you aren't going down without a fight!
posted
Ok seriously people with the 'you may die comments' need to get off her back! It's just down right mean!
This girl is well aware that she is ill and needs to gain weight. She is living everyday the best she can.
Jessica, I was so upset when I read the first few replies to this post. It was a couple of days ago. I get back on here today and I'm like what the crap! I am so sorry. I'm pulling for you girl.
Lyme disease has really affected my ability to eat as well. I cannot seem to heal my gut as well but I am trying. People need to understand you are doing your best. Just because you are still ill does not mean you aren't doing your best and certainly doesn't mean you are in denial. Just because your being positive? Come on!
Boy your down about your illness and people are on you to be more upbeat then you try and be positive and they put you down. Come on!
Posts: 415 | From USA | Registered: Jun 2012
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.....Thanks so much Jess
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