H everyone...my papa and my fella and one of my oldest friends all basically sat me down today as a group and told me that they are troubled by how hopeless and negative I seem and that they are worried about how fragile my health is.
They want me to see if I can get my general practitioner to put me in the hospital for awhile. Their theory is that it will "help get you stronger and they can test to find out what might be wrong with you". They all seem to think something more than lyme and coinfections may be going on at this point.
I told them that I would think about it. I do not see the point in going to a hospital where they will either tell me my problems are in my head, that they do not know what to do to help me or just waste time looking for something other than lyme being the cause of my severe illness.
I feel like I was kind of ambushed today, although I know that people are doing this out of love. I am just so tired of people assuming I am incompetent or something. I do not like being lectured like I am a child. I know I sound obnoxious but I am sicker than hell and I do not bother ANYONE with it. I deal with this as quietly and unobtrusively as possible and I wish people would back off a little. I feel pressured and it stresses me out.
If you were in my position, what would you do? Thanks. Jess
Posted by daynise (Member # 39609) on :
They love you Jess. I'm sure they are coming from a place of concern. It sounds like they need you to tell them how to help you. They feel helpless and want you to tell them what to do for you.
If I was in your position I would give them direction- if you don't want to go to the hospital, have them start calling and vetting LLMD's/LLND's for you- in and out of the state. Give them a list of things you must have in order for you to feel comfortable to see the next doctor and let them see if they can find it.
In an interview I heard that Dr. K takes on cases that other LLMD's cannot make progress with if your LLMD will refer you to him. He might really be able to help!!
What hospital do they mean? Perhaps a teaching hospital would have more knowledge than a regular hospital, but it could get dangerous to be admitted and not given choices or full disclosure on the treatment. I would worry you would be misdiagnosed with something and the treatment could cause you further harm...
Posted by randibear (Member # 11290) on :
i know they mean well but honestly here's my take.
if you ask to be admitted for some such and the doctor doesn't agree, he may want to admit you for psychiatric evaluation. that's a real problem there.
if you are diagnosed as having psychiatric problems, they can legally take control of your life.
believe me, it's happened and it wasn't pretty.
my uncle was admitted for observation, ended up in a straight jacket, diagnosed as severely depressed with disassociative disorders. it has ruined his life.
course he didn't tell his wife about his treatment and when she found out she said she would not have married him. just about destroyed his marriage.
be very careful about going into the hospital unless you have a clearly defined medical problem.
personally i ain't going unless i'm bleeding out.
Posted by Keebler (Member # 12673) on :
- Have you found a nutrition counselor yet or a LL ND who can provide such knowledge & specific guidance?
Have you been able to look? Do you want to? I know that has been suggested but not sure you agree.
IMO, that is the first key. Being under 90 pounds (as you have reported for months), unable to eat very much on a plan - with gastroparesis - you need a specialized medical professional to start there. But not just anyone.
Now, actually, if your loved ones think you may need to be admitted, they may be correct. Remember, they are trying to save your life.
Best if YOU could secure the proper medical professional for yourself but if you can't locate that / those person(s) ASAP, there may be no other choice besides hospital if it becomes an emergency situation.
The more control you can take with finding your professional team JUST ABOUT FOOD FIRST - or your own food plan that will sustain you - the better. If not possible, it will soon be the hospital. I hope that can be avoided as so much control might then be lost.
As you are no longer in "IV FOOD" via TPN, and if you are still just able to eat bits and pieces here and there, at least the hospital might be able to prevent heart failure if nutrition elements get too out of whack.
With low nutrient intake, you are at risk for a heart attack. Sorry to be so blunt but it's very true with prolonged malnutrion - regardless of the reason.
In hospital, at least certain nutrients (postassium, etc.) can be monitored to help protect your heart.
Food is your main focus now. Nutrients & calories must reach your cells, enough, in the correct ratio and likely, many times a day in small amounts.
What a nutrition professional or a LL ND can do is plan out WHICH FOODS, at what times in what amounts will work for you -- and how best prepared such as which should be steamed or pureed after some cooking and which might best be blenderized raw.
How to get the protein you need, etc.
How are you going to proceed so as to keep some control over your life? I'm sure there is the right professional for you but it may take a bit of searching. I'd bet your loved ones could help make some calls - help with your shopping, cooking, juicing, etc. -
Posted by Keebler (Member # 12673) on :
- I know this has been posted many times over many months. You say you found the book "interesting" but don't seem to be following any plan or exploring more on her blog, etc.
However, as you slip further and further away, and others might need to be taking control soon, you might share the detail below and see if they can help you find this kind of professional near you. If they can help with food suggestions.
The added lyme related detail is to help them know that even the hospital may not be the best place considering lyme.
But you have to know, too, that the hospital may become the ONLY choice unless ENOUGH specific nutrients - and calories - can get to your cells on an hourly basis.
You can copy, paste and print all this below for your loved ones:
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. . . .
. . . Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians.
Borrelia burgdorferi, the microbial agent often behind unexplained GI symptoms--along with numerous other pathogens also contained in tick saliva--influences health and vitality of the gastrointestinal tract from oral cavity to anus. . . .
LymeNet Topic: Treatment for Gastroparesis -
Posted by Kudzuslipper (Member # 31915) on :
As you know Jess. I am with your loved ones. I think you need a new set of eyes. And I think you need to give yourself to be helped. Your not a child. But your not being successful at taking care of your self right now. Thank heavens you have people who love you enough to intervene.
Posted by lax mom (Member # 38743) on :
Sounds like they must love you alot.
Posted by faithful777 (Member # 22872) on :
I would shoot for Dr. K. The hospital can't treat what is wrong with you as they don't believe it exists and Randibear has a very valid point.
This country thinks we are all nuts because we have a disease that is supposedly hard to catch and easy to treat.
Please see Dr. K. He takes on some of the most difficult cases and surely he can help.
Posted by Ellen101 (Member # 35432) on :
I have to agree with your family. You have been given wonderful suggestions but seem not to want to pursue them. I think the recent abandonment by your friend coupled with your illness has perhaps thrown you into a depression that you may be finding it difficult to get out of.
If your family sees you not pursuing any help then they are right to be concerned.
Posted by Robin123 (Member # 9197) on :
I like the fact that your father, husband and friend want to help you, but I do not like the sound of them thinking it's something other than Lyme disease, when it sounds like it's Lyme disease causing all this.
Did you ever get a positive Lyme test?
If you need to go into a hospital for nutritional feeding help, I think it would be best if an LLMD or LLND who's knowledgeable and experienced with managing this could be in charge of your hospital treatment.
If this were happening to me, that's what I would want, is a Lyme-literate medical professional who knows what they're doing to supervise.
I just read about Dr Virginia Sherr above, that she's aware of gastroparesis - could she or someone with her equivalent knowledge be contacted to help supervise?
Posted by Rumigirl (Member # 15091) on :
I agree with a lot of what has been said above.
One other thing really concerns me a lot. You said in another thread the other day that you were vegan.
At this point, you cannot be tied to such a strict avoidance of animal products if you want to save your life. At this point, it is either your life of the lives of some animals. You can say a prayer to the animal for giving you it's life so that you may become stronger (this was in reference to someone suggesting bone broth).
If you aren't more open to this, and if you aren't willing or able to find a team: an LLMD/LLND, etc., then you will have no choice but to go the hospital, which likely will only help in terms of IV nutrition---but it may be necessary.
Please heed everyone's advice here, or else you won't have a choice. We're rooting for you, but you have to also "root" for yourself (take steps to save yourself, and not give up).