posted
Hi everyone...I met with my loved ones (well many of them) today to discuss the hospital issue again. We have decided collectively to not pursue a hospital route. I made an appointment with an alleged gastroparesis expert nutritionist tmrw at a local health center.
My loved ones are concerned mainly that I am giving up the fight. I explained to them that if they had been dealing with years of unrelenting illness they might be depressed and/or hopeless as well.
They seemed to understand, and so this is the new plan. I also agreed to see a new lyme dr and asked my former LLMD today to do me a favor and to please get me into this dr ASAP and I now have an appointment scheduled to see this dr in 6 weeks.
I do not think anything will necessarily come of this that is positive...I think I will always be this sick but I love my fella and my papa and my friends too much to not try to keep going. Thanks for the supportive comments and PMs. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
I think that is a great plan Jess! glad to see you moving forward. It is hard sometimes not to give up-I have certainly had those moments myself. But, as you said, you have your hubby, dad, friends. And YOU are worth it! Keep fighting.
Posts: 238 | From new england | Registered: Feb 2013
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posted
Thanks so very much! It means a lot. Jess
Posts: 870 | From ct | Registered: Nov 2012
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Ellen101
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posted
Wow a gastroparesis expert nutritionist right at a local health center, that's amazing! I'm glad your former LLMD could help get you into see someone else. Kinda shocked he didn't do this before. 6 weeks...I'm surprised he couldn't get you seen earlier. Might want to call and check for cancellations. That's what I did.
Posts: 1748 | From United States | Registered: Dec 2011
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lululymemom
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posted
At least your still able to work.. Many of us arent.. Youre lucky you have a support system as well..
posted
Ellen..yes, her name is Loreann and she apparently is very good. My papa has secretly been researching this for a week haha. He got her name from a friend of his who works at the nearby hospital. She works at an outpatient hospital affiliated center.
My LLMD was able to get me in pretty quick actually. This dr has a 7 month waiting list, so 6 weeks isn't that bad considering.
Luly, I work from home as an editor. I could never do a 9 to 5 job at an office. Thanks I am lucky to be loved. Jess
Posts: 870 | From ct | Registered: Nov 2012
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beaches
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posted
Well I am glad that there is finally a plan!!
I can totally understand your dad, hubby and friend's concern and I think they were correct in confronting you. You needed a meeting like that to get you into gear.
The path you were on - no TPN, very limited diet/eating, being "done" with docs, etc. was not a good one. When loved ones see this firsthand, they can take it up to a point and then they are compelled to take action. I would do the same.
I am not surprised at all to hear that your dad was working behind the scenes on this. Good for him!
The thing that concerns me is your last statement: "I do not think anything will necessarily come of this that is positive...I think I will always be this sick but I love my fella and my papa and my friends too much to not try to keep going."
You also have to learn to love and appreciate yourself. You have to "try to keep going" for YOUR own sake, not theirs. Own that one, Jess.
I also think you need to find a way to stay optimistic/hopeful. I think a LL therapist could really help you with all of this.
Posts: 1885 | From here | Registered: Jul 2012
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posted
THANK YOU Beaches!! You are the best. XOXO Jess
Posts: 870 | From ct | Registered: Nov 2012
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beaches
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posted
lulu, not sure why you posted the same reply twice?? Yes, Jess is lucky to have a support system, as many do not. But she herself has stated that multiple times. As for her being able to work, as she said, it's work from home that is manageable (and from what I gather, is very part time).
The focus here is on what needs to be done to secure health and obtain necessary nutrition, not on whether or not someone can still work or how "lucky" one is to have supportive people in one's life.
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beaches
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posted
Hi Jess, I can't tell you how relieved I am that you are moving forward. This is very, very good news.
Please reread all the good advice you've received from so many here on various threads as you navigate future treatment.
You can do this and you can get better! Stay strong and believe that! xoxo
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lululymemom
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posted
Beaches, im not sure what youre talking about.. This forum is to offer support. There is no need to criticize my opinion. Please try to stay positive.
posted
Just my two cents - let's keep the focus on Jessica's medical move forward, and not fight amongst ourselves on the board, ok? All of us are dealing the best we can with the various situations we've been dealt -
Jessica, we can never know what an outcome is going to be, so I advise staying neutral - not judging it before you try -
People at our support group have often come to it very sick, and then with the right kind of treatment for them, they turn around and get better.
With a dad, a husband and a good friend supporting you in this, you're in a good position to get somewhere.
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posted
Thanks Beaches again. And thank you Robin! Jess.
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Ellen101
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posted
quote:Originally posted by beaches: lulu, not sure why you posted the same reply twice?? Yes, Jess is lucky to have a support system, as many do not. But she herself has stated that multiple times. As for her being able to work, as she said, it's work from home that is manageable (and from what I gather, is very part time).
The focus here is on what needs to be done to secure health and obtain necessary nutrition, not on whether or not someone can still work or how "lucky" one is to have supportive people in one's life.
Sometimes the post gets put on twice. I have had that happen to some of my replies.
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lax mom
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posted
I think lululymemom was offering perspective to jess.
At times when I get caught up in my own struggle, it helps to know that others have had it worse and come out on the other side.
The fact that jess is able to use her brain to work even 1 hour at home, is AMAZING.
Heck, I couldn't do that and I am not malnourished and lacking nutrients. So that's a kudos to jess for being able to do what so many on lymenet cannot do due to cognitive difficulties, brain fog and shear weakness.
Also, the fact that she has a strong support system bodes well for her ability to recover as studies show that people with support live longer in general.
We all have lyme on this board. We are all allowed to post our form of support for other members.
posted
LAX mom, hi there. Thanks for the kind words about my working and my support system. I am indeed lucky. Jess
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lax mom
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posted
P.S. jess, I'm glad you have a plan to help you get your health back.
lululymemom
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posted
Thank you lax mom, that is exactly what i meant.. Ellen youre right they do get posted in duplicate sometimes and i try to correct that as soon as i notice..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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lax mom
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posted
P.S #2: don't underestimate the power of sheer will and determination. It sounds like that's how jess, you've been able to work, etc these past few months...that also bodes well for your recovery.
posted
Hi Jess! I'm so glad to hear there's a plan in place. Good luck at your appointment today!!!
Posts: 428 | From Midwest | Registered: Dec 2012
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posted
Great news! Hang in there and keep fighting. Try to stay hopeful. Remember: "hope is a good thing, maybe the best of things, an no good thing really dies." (Shawshank redemption).
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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