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The doctors have given up

Tuesday, March 01, 2011

If you're looking for motivation, if you're looking for positive, if you're looking for anything good at all, trust me - stop reading and close this window now.

I hate to have to say this, but the doctors have given up on me. I saw my primary doctor and she said everything that seems wrong with me is just stress. An inability to gain or maintain weight, an inability to eat more than a little food, having a hard time sleeping, losing feeling and control in my extremities, severe pains throughout my body, an irregular heartbeat, forgetting to breathe, blacking out several times a day... none of this worries her in any way. Though she barely listened, she just nodded her head until she looked like a bobble head doll, and had nothing to suggest, try, or test. I printed out a lot of different reports from SP to try to explain to her the trends that are happening and she didn't want to look them. She thinks there is nothing wrong with me at all. She did give me a number to call to try to get an appointment with a neurologist but warned me that a neurologist wouldn't be able to do anything for me.

Oh and even though I triple checked to make sure that the insurance through my new company would be in effect today - it wasn't. And no one in the benefits or payroll section was there when I tried to call at 4:15pm. Since my association manager will not answer her phone or respond to my emails, I can't get a claim number or insurance information for them to pay for it. So they wanted me to pay UPFRONT to see my doctor. I.AM.BROKE! I said that I was just going to leave then, but they - of course - wouldn't let me.

I really do not want to waste any more time or pile more stress on me by dealing with any more doctors. If they aren't going to help me, what is the point? The doctors are giving up on me, so I'm giving up with doctors. I will eat whatever my body will take, and will not eat when it refuses anything. If I blackout because of my irregular heartbeat, so be it. If I keep losing feeling in my extremities, fine. If I hit 100 lbs, whatever. I've already lost another half inch in height in less than 6 months, so losing height and weight at the same time will give me leeway in my BMI. I've lived through things that should have killed me more times than I ever want to try to count, so this won't kill me.

I have to decide if I'm going to stop using SP now that I have no reason to track anything. It seems pointless to spend my time tracking dozens of things when the doctors have no interest in even thinking something could possibly be wrong with my body.

  Member Comments About This Blog Post:

MANDI99P 3/4/2011 5:53PM

    Hun, don't give up. Even if you have nothing to track, SP is still here to support you. You have so many people here that care about you, and that you can lean on. Even if you are just here to chat and say hello, its enough.

As for the doctors, I know its been said, but you need to try another one. In the end, you know your body better than they do, and if they won't listen, keep trying till you find on that will.

Just keep your head up and know that we all care about you very much.

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HOLLIE90038 3/3/2011 12:44PM

    I think first and foremost that Spark is about living and being healthy. It is a good idea to track what you are eating, how you feel and when/if you are exercising whether you are losing or gaining weight. It is also a fantastic community tool and that is always helpful.

I think the problem with your doctor sucks. I've had issues myself where if it isn't something obvious they blame stress or weight. It especially is frustrating that she doesn't seem to be listening.

There obviously is something wrong. If they trace it to stress, it still doesnt' make it go away. If you don't have a therapist or psychiatrist, it may be worth a visit. I know its hard when you are broke. I've done lower cost clinics before and the weight is awful but it is an option. The advantage to a psychiatrist is that they are MD's as well so they have that overlap of 'stress based diseases' and 'physical based diseases'.
I'm not saying there is or isn't a physical cause but there's a chance that if the symptoms are made worse by stress and the doctor can prescribe something like xanax or lexapro, it may alleviate some of the symptoms or lower them.

Alternatively, maybe some other types of doctors. Maybe a massage therapist as often as possible to reduce stress and pain. Perhaps an acupuncturist or chinese herbal medicine.

There is a LOT out there in the world and western medicine does not have all the answers.

I spent a long time in a chronic pain loop. If you want to talk about it, please drop me a line and I'll tell you. But the sad fact was that stress was making a lot of things MUCh worse for me. never once did knowing I was stressed help me. It didnt' reduce the pain. I didn't 'feel' overly stressed. I felt more upset everytime a doctor would tell me they couldn't find anything for pinched nerves or long term damage. I was on meds for pain, anxiety, allergies plus advil daily. It wasn't until a recent stint in rehab for a xanax addiction, losing my job and gaining 50 lbs that a lot of the stress was reduced/put in perspective. I had to hit the metaphorical bottom. It SUCKED.

This is long so let me sum up: I'm sorry your doctor isn't listening. You need a new doctor or a bunch of them. You can get better.

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1STATEOFDENIAL 3/2/2011 11:42PM

    I've had 4 completely different primary doctors in 10 years. They always treat me like I'm faking, or that I'm a moron, or that I couldn't possibly have any idea what is going on. What really sucks is this doctor actually seemed to care at first. 6 months later and it's completely opposite. The problem is that as soon as they see my previous records, they stop caring. So obviously there are things in there that make me seem like a complete waste of time. So it is pointless to change primary doctors every few months, because they all have no intention of treating me.

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SUNNYBUNNY112 3/2/2011 6:59PM

    Check your Sparkmail

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MOM2ACAT 3/2/2011 3:55PM

    I agree, I think another doctor would be a great idea, and I hope you stick with Spark!

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HANKENSTEIN 3/1/2011 8:21PM

    I would implore you to continue using sparkpeople, find another doctor who can look you over with a fresh set of eyes and maybe consider some alternative kinds of therapy to manage the stress the first doctor thinks is doing you in.

You get, and give, lots of support here, and I would hate hate hate to see you walk away from that, my dear.

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Update and my response about a previous blog.

Monday, February 28, 2011

I was finally able to get a massage today. They gave me an insurance receipt that I can give to my association - I will be asking my doctor for an order for massages when I see her on Tuesday so the association cannot deny that it is medically necessary.

After my massage I was in pain for hours. It makes sense - I've spent the last week with my body twisted and bound up so when that is released it is going to hurt. So after a few hours of relaxing, using a little heat and support pillows, I was able to start moving around more. I'm also able to mostly eat again. I got in a decent amount of food for a snack, dinner, and dessert - including an apple and peanut butter. Before the massage that would have sat in my stomach like a brick and caused cramping. After, it went through pretty well. Can anyone argue with results like that? I also did some stretching, a little at a time, and I'm finishing off my 11th cup of water now (I really need the extra water to flush out the junk that was released from my muscles into my blood from the massage).

As for the blog that several people responded to the other day, here's my response to the questions and a little about why I asked the questions.

1) I try to protect those who are being bullied by others and can't defend themselves. I've been there so many times and I hate seeing others go through it. I try to donate my time and/or money to charitable causes when I can, though I really want to be able to do more. When I have the chance, I try to better myself by learning - when I learn new things I try to apply what I can to my own life, as well as try to share it with those I think it could be relevant to. I also believe that by freely admitting I am not perfect and I make mistakes helps make me a better person, because when I admit a mistake then I can correct it and/or do better next time.

2) In my life, I find that no matter how good I try to be, I have many more people hurting me physically, hurting me emotionally, or attempting to seriously hurt me than people ever try to help me. I've found that many people treat me like I'm less than human and do not deserve basic human rights - like to live without being continuously hurt or threatened to be killed. It is incredibly sad that I have to deal with it, but that's just the way it is. In addition, I've seen so many other good people I know go through horrible things. Some good people do get really good things happen to them, but I find the percentage of good happening is less than bad. Whereas I see people doing really horrible things and getting away with it over and over again. I rarely see people who have done bad things to me ever have any consequences come to them for what they've done. I find this very disturbing.

I was talking about this with a few people recently, and I found that they think I'm just incredibly pessimistic and bring negative events to me like a magnet because of my pessimism. Yet when I go into full examples of events, they just become shocked. For example, I can go into a friendship believing they are a great person and will be good to have in my life, and a few months to a year later I find that they have used me, abused me, and are now blaming me for things happening to them that I had nothing to do with. I was optimistic in the beginning, I was hopeful through the middle, and then I end up getting destroyed. So is it me being pessimistic that brings negative things to me, or have hundreds of really negative events in my life caused me to be overly cautious in as many situations as possible?

Here's something I've pointed out as well: do you find that when people die young that more often you hear "they were such a good person and didn't deserve this", or do you hear "s/he was a *explitive* who got what s/he deserved"? I hear the first example much more than than the latter. Nothing is fair - I understand that - but is the reason so many "bad" people seem to be popping up is because people realize that being "bad" will get them further ahead than by being "good"? So then what makes the "good" people continue to be good - other than we have good souls, caring hearts, and empathy? I find that even when I want someone else to receive in return what they've done to me, I can't get myself to do anything about it.

I have more to say on the subject, but I will stop here, as it is probably TMI. But I will say thank you again to those who responded to my blog. It is heartwarming to know that others around me have been putting in such honest effort to be good people, and that some people still believe that good things can happen to us. Best wishes to all of you in all you do.

  Member Comments About This Blog Post:

MOM2ACAT 2/28/2011 3:50PM

    I'm glad the massage helped, even if it did cause some temporary pain. If it helps you to eat, that is great!

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A lazy day

Sunday, February 27, 2011

I'm still so tired and it is driving me crazy. I want to be able to eat full meals again without pain! grr Most of my day was spent dozing on the couch watching tv. Really really hoping my massage tomorrow will ease the nerve problems until I can see my doctor next week and hopefully a neruologist soon. I hate knowing I've got a pretty good working theory on what is wrong with me but not being able to do hardly a thing about it until I can get a doctor pay any attention to me.


Short update

Saturday, February 26, 2011

Getting all excited and laughing through tonight's meta episode of Supernatural wore me out (not hard to do with what I'm going through). So I've already been dozing and need to get to bed. Quick update: massage scheduled for Sunday, another meeting with the gal at the gym for stretching on Monday, seeing my primary doctor on Tuesday, seeing my GI doctor on the 17th, and I still need to figure out a neurologist to see (hoping to get a recommendation from my primary doctor). As of this morning I am 6 lbs above being underweight (lost 1 lb/day this week due to not being able to eat the stupid 2400 calories I need), and since I usually lose 3 lbs on weekends, I'm sure you can imagine I'm a little worried at this point. I've been fighting to maintain or gain a few lbs for 6 months, and once I start putting a few on, something happens to shut down my digestive system again. Since I apparently have a superhuman metabolism (which I absolutely HATE!) only getting 1,000-1,500 calories a day is just destroying me.

Hoping for a longer blog tomorrow - when I'm not falling asleep in my chair. Until then, g'night and have a good weekend!


Trying to push forward.

Thursday, February 24, 2011

Thank you to all of you who responded to my blog from Tuesday. I will respond with what I'm taking from your responses soon (hopefully tomorrow).

In the meantime, I traded messages with my GI doc today (through his coordinator) and he said he knows nothing about the vagus nerve affecting the digestive system. Um, okay. So he said to try a neurologist. I stopped by my primary doc's office after work to see if I could get an appt (instead of calling in - it was on my way home). Because of the irregular heartbeat and breathing problems, they wanted me to see a nurse right away. It is disturbing how difficult it is to explain what is going on to anyone in the medical community. Yes, it is a lot of information to put together, and they hate it when you 'self-diagnose', but seriously, when everything points in one direction it makes sense to follow it instead of acting stupid and waiting for them to get a clue. So a half hour of talking to her and she just sent an email to my doctor - I should hear tomorrow if my doc wants to see me before a neurologist, and hopefully she has an idea of where I could find one. I want this figured out so I can eat again, as well as stretch and move without passing out or having my heart want to explode. Gah!

Contacted the association to try to get them to pay for a massage - when I said I injured myself she immediately assumed I had fallen. Wow she is an idiot. When you shovel 20" of snow in an area as big as a car in 20 minutes when you're not used to it (add to it my medical problems and an inability to gain weight or build muscle) the damage is to soft tissue and for me it is compressed nerves. She hasn't responded if they will pay for a massage session (or several I hope!) but if she comes back that they won't, I guess I will be getting an order from my doctor for it to send to her. I can't afford another massage when I just had one last week (I usually get 1/month) and they are entirely to blame.

I'm looking forward to an incredible episode of Supernatural tomorrow night. I need a hard enough laugh to make me fall off the couch (will probably happen based on the previews). Then Saturday friends of mine have a show where they're also celebrating the guitarist's 40th birthday. Unfortunately it is on the north side (around an hour drive each way) and we're due to get about another inch of snow. Since my car is going to hell, gas is at $3.50/gal, and I can barely eat so I have no energy, I don't know if I'll make it. Really disappointing, but it seems I'm missing out on more and more of my life due to this stuff, so I should get used to it. Ugh!


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