posted
Hi everyone...I have a llmd and a gp that are very invested in my case but they have been kind of pessimistic again lately and it does affect me a lot. I appreciate them being honest with me and assessing things without rose colored glasses so to speak, but I got a call from my llmd today telling me that I will probably have to be on tpn for "many many months if not YEARS to come"...I CANNOT accept that will be my reality.
And I saw my GP a little while ago because she had an unexpected cancellation and she was basically trying to hold my hand and tell me "no matter what happens, you will be ok...a diminished life is still life"...I retorted, "what does that mean?" and she said, "you are VERY sick but you have a fighting spirit so if you don't get better you can still be happy"...AARRRHHHH...
I am not naive. I know I have an uphill battle ahead of me, but I have to believe that I can improve, and I resent them making comments like this. At the same time, I do not want to appear like a hypersensitive child, so I just stayed quiet. Any advice as to how to deal with these comments?
One of my dearest friends tells me that drs know nothing, they aren't all knowing and I think he is right, but it still frustrates me. How do you deal with drs that make pessimistic statements? I do NOT want to leave these drs as they are incredibly dedicated to my case. I just hate feeling like I have no hope-I don't think my situation is hopeless, but their comments make me feel like that a bit, although I know that isn't their intent. Thanks for any ideas/advice. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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surprise
Frequent Contributor (1K+ posts)
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posted
Maybe I'm naive, but possibly they are trying to get you to eat?
Is there a medication of some kind that can help you not throw up? (Sorry if that's a dumb question)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Trying to get me to eat? Huh? I don't think so....I think they are scared cuz I am so sick, to be honest. I can tell I scare them. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It may be helpful to distinguish between information and your reactions to that.
1. This IS a very rough spot and it may take a long time on TPN. Fact.
2. That projected time line could be better - or worse. Fact.
3. You have certain things within your control. Fact.
4. Some other things not within your control right now may be more so as time progresses (i.e. your ability to eat actual food). Fact.
5. Given the situation, I can see how these facts and the professional & honest opinions of the doctor(s) can certainly cause unpleasant emotions. It would for anyone. Fact.
6. If at all possible, look at the facts, listen to the assessments and concerns and then - step back. Breathe. Decide how you will "frame" this for yourself and how you will move forward but also how you can just tread water for a while.
Fact: how we take facts and how we fashion our response can help us turn around how we feel.
But, it's not really an either-or situation. It's not that today you may feel pessimistic and then tomorrow flip over to optimistic for a cheery ride.
Emotions are always moving within us. Don't be afraid of the "pessimistic" waves but be sure to allow some "we'll see" and "I'll just do the best I can" and "improvement IS possible" -- well all that can help balance.
You may want to find a LL therapist with whom you can "reframe" how you accept, see and work with the facts AND emotions around all this.
From a fact, where do you go? And how long do you stay there? A therapist can help you find skills to make those leaps less traumatic.
They can also help you be more comfortable with the sadness, disappointment, fear involved. I think it's important to be able to manage all that - so that we are no afraid of all that power. It may not be as negative as we think, as it's often wrapped in love and concern, really.
Yes, there is always hope. And, even in the face of stark facts, being empowered to do your best is mighty powerful, indeed.
THAT's where mood changes. When you can feel the power - make decisions and be involved in things that will help your body.
Start or revisit a hobby that you enjoy - something totally away from all this medical stuff. Even you can't participate, maybe gather funny movies, books with art, or whatever tickles your fancy.
Get out of town, so to speak. Often. Make "medical topic-free" zones or times. Keep that sacred. If you have a medical thought, just let it drift away. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- During times of surprise news that shakes us, be sure to have your adrenal support going for you. These kinds of shocks, even if not exactly sudden, can really tax our entire adrenal system.
The suggestion in previous post to take on a new hobby and establish some free time and stress free "zones" was to help you with some enjoyment of life.
No matter what all is going on, if you can experience some good stuff - or even just see it going on and appreciate the nuances and layers - that will just make this all easier for you.
I may not be able to go out but certain films, etc. give me some enjoyment. For films that may not be for enjoyment, at least I can gain a better understanding and awareness of life outside my borders.
Recently, PBS aired a documentary HALF THE SKY. It was a perfect balance of showing dire situations but also beauty within all that and ways to transform.
Nature documentaries, travel shows and even cooking shows can be really nice escapes. The cooking shows may help you with your appetite and ideas for how to vary recipes.
But, whatever interests you have away from medical stuff, just be sure to invite that interest into your daily life. -
[ 11-27-2012, 04:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Kudzuslipper
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Member # 31915
posted
Jesse, I am truly and always amazed at your positive spirit! That being said, I think it is good your doctors are being honest (their opinion only) with you and preparing you for what could be long term treatment with TPN. And also the possibility that it is a long road to normal.
If I could take a guess, I bet you try to make the best of the situation with your doctors. trying not to be as sick as you are. I watched my mother(talk about rose colored glasses) do this in the emergency room... she kept saying "I am not sick" I watched the doctors take hold of the situation and make sure she understood the seriousness of her condition.
Now I know you know how seriously ill you are. But I wonder if there was a little correction going on with these doctors? I know you pride yourself for still being able to work and have intimacy... and the thought of having the appendage of a pick line has truly bothered you. Maybe the doctors want you to give in a bit more to the illness To face it head on and accept treatment is open ended... for now!
I believe you will get better. But I can tell that your GP was right on when she said you will be happy no matter what! I mean you seem to find happiness now, and you are 82 lbs, vomiting, with a pic line, shaking and in pain... (remind me to ask you how you do it?)
But what to say to them? how bout... "I hope I prove you wrong!"
Posts: 1728 | From USA | Registered: May 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
In situations like this it is important to just live one day at a time, not look ahead and try to predict what will happen. That is hard to do for those of us who are planners, want to be one step ahead so developments don't crush us.
Today I feel like X, tomorrow may be different--better or worse, I will cross that bridge when it comes. Try this?
You can't do this because your docs know your situation in total, but I am currently wondering if I should give my lyme doc any info about recently diagnosed melanoma. Am afraid he will give up on me before I do.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Kudzu-that post was so incredibly kind...I cannot thank you enough for it. I feel so damn worthless at the moment. Yr post really moved me and helped me feel better. I thank you again. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Hey, I'm sorry. Everyone said it better than me.
Sometimes I can't convey in writing well, but know we are all pulling for you---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Surprise-no need to say you are sorry! Thanks, I appreciate the kind words. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Poppy,
You say: " currently wondering if I should give my lyme doc any info about recently diagnosed melanoma." (end quote)
First, sorry to hear of the melanoma diagnosis.
Second, you MUST tell your LLMD. He deserves your honesty and full disclosure.
To not disclose this can put your lyme treatment (and melanoma tx) and his practice at risk.
All this needs to be coordinated.
He can't do his job for you unless he knows and if he proceeds in the dark about this and there are complications from the treatment he prescribes due to the melanoma or treatment, HIS license, his livelihood is in jeopardy.
He needs to know.
You also say: " Am afraid he will give up on me before I do." (end quote)
I seriously doubt he would give up on you. However, do we want the truth or a fairy tale?
I want the truth. I need the truth in order to be in control of my decisions.
If he "gives up on you" how would that come about, anyway?
He's not going to just say "well, that's it"
Likely, he will be able to put his wisdom and skills to use to adjust your lyme treatment plan to correspond with the melanoma treatment.
If any doctor is ready to "give up" - meaning they would be at the end of their skill set or comfort range - well, then I would sure want to know.
Chances are, even if that would be the case, they'd have suggestions for someone else to help, whatever the situation.
Still, when the end is closing in, I would still want full honesty. I would clearly resent any doctor who would offer anything less. I don't want them to hide anything relevant so I can't either.
But, there's a huge leap from hiding important facts because you may be afraid he'll not be able to help and that actually being the case. A huge leap. There's a lot of ground - and time - in between. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I think when doctors get frustrated, they tend to project those feelings.
You will get better. If you are on tpn, your body will get stronger, and able to fight harder. There is no time frame. Don't worry about it right now..no one can say what the reality is.
Think of your picc line as your friend, not the enemy. It's there to get you well so your stomach can heal. -get some pretty knee socks, cut the toes off and use them for covers.
Tell your doctors-I know I have a long road-but I need your optimism right now.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Jessica- Being in a place that we can't control is frightening. It is especially scary when we see the life we know slipping away like sand through our fingers.
However, from what you have posted, this kind of circumstance "being out of control" has happened before to you. As a child, you could not control the things that happened.
You endured them and overcame them to become the resilient adult you are now. You are a survivor.
No one knows the road that is ahead...We just think we do. It is easy to fool ourselves into believing it. All we truly have is this moment.
Take confidence in knowing that you are doing the right things to get well.
When you get overwhelmed ask yourself, "What is the next right thing?" and then do it. If you're not sure, then wait because the answer will come.
Doctors don't know everything. Their opinion is simply information as they see your situation. There is always a level of truth but they can't factor in the human spirit.
Just keep putting on foot in front of the other.
Hugs!
Posts: 538 | From kentucky | Registered: Nov 2011
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posted
Soccermama-yes I experienced being out of control before in my life-I think all of us have. I appreciate you calling me a survivor-that's all I have ever wanted to be...never a victim. Thanks for the kind words. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
It is very hard to hear statements that are not what you expect or just floor you from docs. Especially early on (1st few years) of your illness.
My 1st pcp, who I'd been seeing a few years when all this came up said, "well, if you do have lyme, you may as well and file for disability now". Now, this is NOT what I wanted to hear, or not helpful to me at the time, about to begin rocephin tx.
I felt like she was giving up on me. She really wasn't, I think she was just preparing me that it would indeed be a LONG, and hard road.
Also, when I had my new pcp tell me over and over I needed to quit work a couple years later, (I guess 3) I went to get a 2nd opinion. Well, because of my chronic EBV, another doc said that if I didn't rest enough and let the EBV keep staying active there was research to prove I'd probably get lymphoma. AND, he said most don't survive that.
Needless to say, I did not want to hear it, but it did put things better into perspective for me. I did quit working, and yes it was incredibly difficult in numerous ways, but there are good things about it too. I got to stay with my then 4 year old dd at home, and since then pick her up everyday from school. When she's off school I stay here with her, instead of paying for some daycare.
Also, I can travel to see my 24 yo daughter whenever. I don't have to get off work. Well, not whenever, but whenever I feel up to it..you know
I'm just sayin', just because it looks all dark at the moment, it may turn out better than you think once you get through the rough patch.
One day at a time, is still valid..at least for me.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Take it one day at a time. Nobody knows the future.
I was told by my doctor (Primary Care) that it is likely that I'd be back on TPN at some point. Not what I wanted to hear after just getting off after having been on it for 3 1/2 years.
But I shrugged and said maybe, maybe not.
Ask yourself, what if I'm on TPN for a long time? What is the worst thing about that? Take this thought out to it's logical conclusion. The truth is, it is not the end of the world.
The TPN is helping you more than hurting you physically speaking. Now to get the emotional side to come around and start seeing it positively
Furthermore, I was able to get off after being on for 3 1/2 years and I was severely ill (hospital ER said I wouldn't have lasted much longer when I came in with severe dehydration and ketoacidosis...) at the begining of the 3 1/2 yrs.
I had lots of set-backs from Lyme flare-ups & herxes, & allergic reactions (anaphylaxis, which lead to my stomach shutting down again for a few weeks) that you may or may not experience.
Shoot - you aren't even on Lyme tx right now, and that may totally turn this thing around for you!
There are published case reports of people with Gastroparesis and Lyme, even someone on TPN from it, who got better (and off TPN) with Lyme treatment.
So please don't give up. There is hope...there is ALWAYS hope!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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The short story version: My daughter was dx with Crohn's Colitis at age 9 via colonoscopy, after being sick for six months.
For 5 years, life was hard for her (and me). Meds including prenisone :-( and other IBD meds but always strict SCDiet (specific carbohydrate diet).
I was finally dx with Lyme 3 years ago and learned all about Lyme.
Eventually I had her ped do a CD-57 test and it came back 18. Then after provoking with antibiotics, I had him run the Western Blot, sure enough a big fat positive.
At the same time, I had her do a stool test with:
INSTITUTE OF PARASITIC DISEASES 1-602-955-4211 in Arizona.
The are the ONLY lab that EVER found ANYTHING. They found evidence of parasites! (charcot-leyden crystals)
It is now 1 year since she began antibiotics for LYME and unknown variety of parasites. Stools are formed again.
She ate a full Thanksgiving Day dinner for the first time in 6 years! No gut reaction.
She has gained 25 lbs which was needed. She has gotten better in every way. She is now 14 1/2 and I still cook everything SCD.
I don't know your background and gut-symptoms. I HIGHLY recommend the above stool test for parasites for anyone. (I think I'm going to have my entire family tested soon.)
Clindamycin, azithromax and flagyl have changed her life. (mostly)
Yes, there is hope. I have learned to pick and choose what to believe from doctors. I did NOT solve her problems by listening to them! I never stopped trying to find answers for my daughter. YOU know your body better than anyone. Research, try testing from different labs if you are financially able. You can do this!
-LAXlover misdiagnosed for years probably have had Lyme since 1995 bit again 3 years and finally clinically dx with Lyme, CD-57 is 20. Now 75% of family with Lyme
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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