Support/Compassion Needed

[hiwaygal]

I hesitated posting here under my usual user name. But I'm tired of trying to remember all that crap. I think one of my new motto's is "KISS".

As this is a support forum, that is what I’m requesting.

I know I have not been doing what I should have been doing with regards to my physical and emotional well-being and I think I’m starting to actually feel the price I’m paying. And I’m scared.

The good news: maybe what’s going on is what finally made me schedule a doctor appointment (for next week – the earliest I could get one).

The bad news: well, I guess there isn’t any except facing the consequences of my choices over the past year or so. Nowhere to go but up, right?

Some of my excuses are just that – excuses. Some of them are dependent on things going on in my life. Limitations, both emotional and financial, have kept me from seeing a doctor and keeping up with my medications. But those financial limitations haven’t kept me from following a decent diet plan, exercising, and not testing regularly (among other things).

So as I sit at my desk on this Monday afternoon, eating my crap-tacular salad bar lunch (low carb, don’t ya know) – I find myself in need of support and understanding; a sympathetic ear. And yes, maybe a little bit of a pity party. Is that too much to ask?

I think what finally got me moving this morning was a dream I was having last night. I kept waking up from the dream but my brain could not “switch” between reality and semi-consciousness. I literally couldn’t tell if I was awake or still dreaming, and which “reality” I was in. When I did finally choose one, I realized what I had been doing. It was a weird feeling.

My body feels like it is beginning to betray me. My brain wants to do some things but my body just won’t or can’t. Walking is becoming painful; my muscles feel so weak. How much of this is diabetes? How much is hypothyroid? How much is lack of exercise? How much is mental and how much is physical? I know no one can answer these questions – but still they come.

I realized yesterday that if I don’t do something, I’m going to end up in a hospital. Part of me doesn’t think that would be so bad. Just stick me in there and get me “well”. Of course, isn’t that the magic pill we all want? On the other hand, my responsible self realizes that I can’t afford a hospital visit. So I need a Plan B.

Plan B, Step 1 – make a doctor appointment, preferably with an endocrinologist. DONE! I won’t go into the inane and insipid conversation I had with the gal scheduling said appointment. Mostly because I’m sure my perceptions are skewed. Suffice to say I will be seeing someone next week. And the waiting begins.

Plan B, Step 2 – grocery shopping tonight for simple, “grab and go”, LOW CARB, “good” things for breakfast, lunch, and snacks at work. Stimulating (not). Sometimes I hate grocery shopping. And since we must tighten our belt straps, we have all our coupons to go through while we are at the store tonight. We’ll be lucky to get home with enough time to cook dinner, let alone eat it.

Plan B, Step 3 – wait? There are more steps? I haven’t gotten that far…

I have started taking (again) what few medications I do have. But there are some I’m simply out of and can’t get without a script. I’m not holding my breath that next weeks’ doctor visit will be very productive (based on my limited recent experience). So I’m doing what I can, I guess.

Maybe Step 3 should be to start exercising a bit. But now it’s getting overwhelming (baby steps, right?).

Can anyone relate?

 

[mommasita]

First off

You seem like you have started on the right track with seeing a Dr..
It could be a lot of things (I m no Dr. )..

If the Dr doesn't do a vitamin B12 with the regular panel, maybe suggest it.. IT is responsible for SOO many things with our bodies, and it isn't normally screened... I had a lot of your symptoms and mine was so low it was scary.. I self-inject weekly now and the difference is huge..

I hope the Dr's visit is a good one. Seeing a compassionate Dr is all the difference in the world to me. One that will listen, as well as talk. You seem like you feel it may be the opposite, have you seen this Dr before?

Baby steps is right.. One step at a time is all we can do... More

 

[hiwaygal]

Thanks for the hugs. I needed them.


Re: the B12 - I've been taking a supplement for months, so unless my body is not absorbing it or it's still not enough, I don't think that's an issue for me.

Re: the compassionate doctor - I agree with you. I hope I can find one. We moved recently and I've seen exactly two doctors. One who upon his entrance into the waiting room proceeded to lecture me on smoking. It wasn't why I was there and he didn't even ask - just started. I got pissed and nearly walked out on him. Needless to say I will NOT be going back there.

The second one was an eye doctor associated with a large teaching hospital in the area we now live. They are anything BUT compassionate. Each doctor specializes in ONE thing. And they will not talk to you or work with you on any other thing even if it is still within their specialty - for example - I saw an opthamalogist. I have high occular tension, dry eye, and diabetes. She only deals with diabetes related eye problems and referred me to another opthamalogist (in the same practice!!!) to discuss the tension and dry eye problems. She also noted that they would probably only discuss one or the other and that I would likely need TWO additional appointments.

Today, while making the appointment with an endocrinologist, I was told they ONLY allow appointments without a referral for diabetes. I told her I was diagnosed awhile ago and have not been under a doctors care for over a year. I told her I also have hypothyroidism that has not been treated for several months. She said something like they will only deal with the diabetes. Ummm...you are endocrinologists. I have other endocrine issues. What about those? So who knows what this doctor is going to do/say.

I'm seriously considering going to a doc-in-the-box (which I would NEVER have done previously) just to get the basic bloodwork done and try to get in front of these so-called "specialists".

Up until we moved, I went to the same doctor/practice for over 20 years. I developed what I considered a pretty close relationship with a PA there. I knew it would be hard (if not impossible) to find a replacement. What I'm finding is bordering on insane and archaic. I'm not sure what to do. I don't think I have time (or money) to keep going doctor to doctor 'til I find one I can deal with. And my patience wears thin so easily...

I know there are so many dealing with so much more, I feel ashamed to ask for anything.

 

[mommasita]

Never be ashamed.. Nothing is too minute here...

I can't absorb b12, MANY can not.. That is why I must inject.. I was on tons of oral supplements, and my body rejects..

Ugg, so frustrating with that Dr. You really (as you know) need to see and endo for those issues.. Are there others you can ask your GP for a referral to see? Rate MD is awesome in my opinion, for getting feedback.. It must be difficult in another city than you are used to...

Not sure what Doc in a box is .. It may be different here vs the USA.. But I have to tell you, that I credit my GP with his sending me to many specialists to discover what I have/Had.. He is only great for a prescription really, but boy does he have some great specialists..

 

[hiwaygal]

I can't absorb b12, MANY can not.. That is why I must inject.. I was on tons of oral supplements, and my body rejects..

Ahhh...thanks for that. It is possible that I cannot absorb it either. I will mention the test. If I can.

The doc in a box is basically an urgent care center like this one: http://www.patientfirst.com/

However, many people do use these as primary care physicians. I do not have a PCP yet. It took me months to narrow down the few choices I had and when I finally got the courage to call, they aren't accepting new patients.

Your PCP sounds like my old one. An internist who handles general stuff. Mine would receive all my test results and kind of coordinate it all for me and talk to me about it in a way that I understood it. But, anything that required specialized care, she sent me to a specialist. And, she would send me to ones either she knew personally or knew I would like. If I didn't like one, I'd tell her why and she knew not to send me there again, or it could help her know which personalities I liked. It was great. I could talk to her about anything. Hell, we often spent more time talking about/catching up our families for the first part of my appointments. It got to the point where they would schedule me later in the day and if they could, not schedule anyone else, and leave a long time slot for me. It was just easier.

Anyway - apparently the vent and hugs helped a little - so I thank you very much! I feel a little better today. I'm just hoping it sticks.

 

[lovemygoofy]

Oh I'm so sorry to see that you are having such difficulties. Don't put down your problems or compare to others. Your problems are a big deal to you which makes them a big deal period.

I certainly understand the difficulty of finding a new doctor and trying to forge a relationship when all you want is your old doctor. However, this might be good for you because fresh eyes and fresh thoughts and don't take this the wrong way but sometimes we start to "run over" a doctor we are comfortable with. A new doctor might wake things up a bit and change things around for you.

I'm hypothyroid as well and boy can I tell when my thyroid is wonky. Mine goes one way or the other because I still have a semi functioning thyroid. Before I was finally diagnosed, my body just hurt. My fingers were at the point I could barely open a water bottle and my legs hurt and cramped every minute of the day it seemed. Half the time I couldn't keep a thought straight let alone make it through a day without a nap.

I don't have any expereince with diabetes but take your meds/follow a food plan. I don't want you to die or suffer because you could make some simple fixes. You know I think you are awesome! I understand that the low-carb food is a challenge and expensive but surely there are some ways to combat it.

I don't know if ya'll like veggies much and in our house it's hard to eat alot of fresh veggies before they spoil. I much prefer buying frozen veggies and using what I need at a time and keeping them in a freezer bag in the freezer when I don't need them. How about making up a menu for a week? I know that I save money and stay on track by going week by week and takes the pressure off trying to figure out what to make.

I don't know what kind of endocrine doctor doesn't deal with other endocrine issues unless it's because of coding issues for insurance. I know that when I see a doctor, if I don't have the referral stuff done first, I can only discuss one specific issue because of insurance things. Complete pain in the *** I know.

Lastly I know about people being on your case without knowing the story. I had pneumonia most of Feb and half of March. I was at the doctor 6 times in 4-5 weeks. The last doctor walked in and told me if I had the weightloss surgery that I would have no asthma AND I would have a baby. I was beyond pissed, can't breathe and in tears. I just went off and said yeah "there are no skinny people with asthama and infertility right?" When I was done with the appt I complained to the office manager because I was not not happy.

I'm glad you are now taking steps to get better. Matter to yourself and want to take care of yourself. If you don't want to do it for yourself, take care because others love you.

PS I hate to sweat and not a big excersizer but you know I really enjoy pilates and yoga. It has helped me stretch and build my muscles and really changed my body without me feeling like an oompa loompa working on out. Maybe you can try that as a way to start a little sweat equity. I really really hope you get some answers soon.

 

[mommasita]

hiwaygal: Glad today is a little better for you. Sometimes all we need is a little shoulder, and someone to listen. Not saying that is ALL you need, but it does help.

Tina: hearing what that Dr said to you made me so upset .. There are some compassionate ones, and some just have ZERO bedside manner.. The first neuro I saw a few years back told me there was nothing wrong, I was overweight and lazy, and wasting the government's money on testing. I drove home in tears. A miracle I didn't kill myself or someone else on the road... I was overweight, but that doesn't make me lazy .. Thankfully the next one was a "real" Dr.. I lost 65 pds, but nothing changed... Then they did the MRI and found it.... I have since thought of going back to the Dr, and slinking in and saying HELLO remember me.. I can't gain weight now, and I am now what he considers the "perfect size", and things haven't changed. I did report him, and feel awful for anyone who sees him. It is something I will never forget..

 

[hiwaygal]

Thanks again ladies for lending an ear (or an eye in this case, lol).

Do you ever wonder if sometimes you need to crash before you can fully appreciate the “good” times?

Let’s just say that my blood sugar readings were probably pretty darn close to the limit, and we still don’t know what the TSH is.

Tina – your description of the thyroid stuff you feel is EXACTLY where I am right now. OMG! I’d been on synthroid for so long I think I forgot how bad it can get – that or I’m older now and just can’t tolerate it as well. Body aches, can’t open anything, can’t stand for more than 10-15 minutes, can’t walk very well or long, can’t remember stuff, can’t concentrate for more than a few minutes…and so very tired. I think I slept about 8 hours during the day yesterday.

We’re the same with veggies too (it’s just me and DH). DH likes to buy in bulk at the warehouse clubs but I keep telling him most of it goes bad before we can eat it all. But we did get a few fresh things yesterday. There are a couple of veggies that just taste funny to me if they are frozen (green beans and carrots) but most everything else can be frozen.

The menu planning is a good idea but I suck at it. Just can’t do it or something. We’ve tried it before and I just can’t seem to stick to it or find the time/energy to do the necessary prep work when it needs to be done. I know it’s a self-discipline thing but sometimes it’s a time constraint thing.

As for the doctors and their specialty thing around here – I’ve never seen anything like it before! But even the doc yesterday referred me to one endo for diabetes and ANOTHER endo for thyroid.

Oh, and doctors with their own preconceived notions and prejudices are hard to tolerate. I see you had one too. Grrr! I swear, I’ve walked out on a few and will do that again in a heartbeat. When I’m feeling like crap is NOT the time to lecture me.

Lastly, I’m with you on the exercise thing. And it’s especially difficult when your body is in revolt. However, like you, I really like yoga and stretching exercises. I guess even doing them on Wii is better than not at all. But right now I just can’t. Physically and mentally can’t.

mommasita – you are an inspiration for many on this board. I may not have been here much, but I’ve been around the DIS long enough to know that. I totally think you should go back to that doctor and experience that little victory for yourself (that he was stupid in the first place). Some doctors just think they know it all and have seen everything so they make assumptions about people based on first sight. It’s prejudice and it happens, but there is some satisfaction in showing them they are wrong. But then, I do have an evil streak! lol

So now I have to face some fears and resolve to make more doctor appointments…

 

[mommasita]

Do you ever wonder if sometimes you need to crash before you can fully appreciate the “good” times?


YES.. BTDT. I long for the good times, and some days are definitely worse than others...At times it takes all not to ask why me, but when that happens, I just find inner strength that I thought was empty..

And Thank you so much for the kind words.

You got this, you can do it.

 

[Pea-n-Me]

I think it took courage to post here, hiwaygal. I hope it's helpful and that you find what you're looking for.

As a hospital nurse, I can assure you that you are not alone. Many, many people lose their way when it comes to their health management. (Hey, crap happens, and we are all only human!) It doesn't mean they can't get back on track. We treat every patient respectfully and try to give them the information and resources they need to get back on track. I, personally, say don't look back; just look forward.

Compassionate caregivers are out there. You just have to find one. (And admittedly it's challenging.) I'd prefer to see you find a good primary care doc that can be there for you for the long haul rather than your seeing an urgent care doc whom you might never see again. Have you considered finding someone who practices holistically? Or another PA or NP (who work as part of a care team including an MD)?

 

[Snowysmom]

I am usually a lurker on this board but your story sounded so familiar. I have also had problems finding a good PCP who was not judgmental. I have even had one insult me throughout the whole exam to the extent that his assistant apologized to me. My DH wanted to send him a dead fish. I should have let him. I do not like to go to doctors and will wait a while to see them. I do have a fairly good PCP now but I still don't go as often as I should.

It sounds like you know what you need to do to get healthier. It is hard to take the first step but once you do, it gets easier and better. I started walking every day on my lunch hour. Then I added yoga. And I do meal planning that only takes me a few minutes a week. This has added up to a 55 pound weight loss over a couple of years. I still have more pounds to lose but I didn't put the weight on overnight.

Please take care of yourself with the diabetes and thyroid issues. I am glad you are going to a doctor and hope he is compassionate and caring. Taking little steps to get healthier leads to bigger and better steps and great results.

 

[hiwaygal]

Pea-n-Me thank you for your thoughts!

I mostly lurk on a couple of message boards for diabetes, but have posted some. And OMG they claim to be “supportive” but they all seem so judgmental and…mean! They seem to follow a tough love approach. Probably I should just stop going there but sometimes they have really good input on things (especially menu ideas).

Right now I’m so burned out on that stupid provider website provided by my insurance company! LOL. I just can’t bear the thought of searching it again. Maybe tomorrow. And I have no objections to a PA or NP, but I’m having trouble just getting in some places. I don’t even care who they schedule the appointment with. It’s just frustrating and my patience is so thin right now. But, I totally agree with you that one practice as opposed to an urgent care is much preferred.


Snowysmom – I’m so sorry you have had a bad doctor experience too. While it’s not a good thing, I’m glad people can commiserate.

And way to go on the weight loss! That’s quite an accomplishment!

The weekend was a good one because I was able to rest and focus. Three days of bliss (except for the nightmares) and I didn’t want to come to work today. As for getting back on track, yeah, I know what I need to do but right now I just hurt so much. I know it all sounds like excuses but until the things are better under control, I will hurt. Normal thyroid value (TSH) is somewhere between 0.5 and 5.0 (mine was over 100). My blood sugar was near 300 and I didn’t get the A1c number from the girl that called me back. I’m not sure I want to know. I just want the pain to stop. It’s just after 9am and I already don’t know how I’m going to get through the day.

I see an endo tomorrow. God only knows how frustrated I’ll be after it’s over.

 

[Pea-n-Me]

I re-read your OP about the nightmares. Hyperglycemia can cause these! (If you google hyperglycemia and nightmares you can read others' experiences.) I think you can safely say, too, that [at least some of] your pain is probably related as well. Changes take place to the vessels, nerves and other tissues which, over time, cause a lot of problems in the body.

Diabetes runs in my family. My grandmother had both of her legs amputated when she was in her 50s (in the 1950s) and other complications from diabetes. (Subsequently, I never met her. ) Her daughter, my aunt, had diabetes as well, but with modern medicine and good control, she lived into her 80s with relatively few complications.

OK, this is really weird, and maybe it's a sign so I'm going to post it. We saw 42 last night at the movies, and today is Jackie Robinson day in MLB, where all players wear the number 42. I have the Sox game on and my DD asked me a question about Jackie Robinson so I looked it up. I actually had two screens open and had written what I wrote above, when I read this about Robinson:

Post-baseball life

Robinson retired from baseball on January 5, 1957. Later that year, after he complained of numerous physical ailments, his doctors diagnosed Robinson with diabetes, a disease that also afflicted his brothers. Although Robinson adopted an insulin injection regimen, the state of medicine at the time could not prevent continued deterioration of Robinson's physical condition from the disease.

Born: January 31, 1919

Died: October 24, 1972 (aged 53)

How weird is that?

I'll leave it at that. I hope it inspires you to do what you have to do.

 

[hiwaygal]

Pea-n-Me I gotta tell you, at first I was when I read your post. It took me about 5 read throughs before it all finally clicked in my head. I'm such a dork and it's a perfect example of how my brain isn't firing on all cylinders right now.

You are good people!

There is family history for me too. My paternal grandmother had it, but I'm not sure if it was Type 1 or 2. And my mom has it (type 2). I don't know if other family members have it or not.

And I'm amazed at the number of folks who die so young due to diabetes. And all the complications there can be.

I think part of me still has that teenager-type "immortality" thing in my head - like none of that really bad stuff could happen to me. (I think that part comes from my mom's father who is a mean old cuss and will probably live forever!) But then I have to take a harder look at what is happening now and know that, yes, indeed, it could happen to me. So I have to be smarter.

The good thing is that I know that I can gain significant (if not absolute) control over diabetes with watching what I eat - because I did it before! Of course, the recent cravings for chili cheese fries have to be curbed!

About this time last year, we were getting ready to reduce my diabetes meds because I had lost weight and had been paying attention. All last summer things were good. It was only after all the prescriptions ran out, and I got frustrated, and the move, and all the other crap got in the way - that's when it all fell apart.

I just gotta get back to that point. I just want to feel better NOW even though I know there's no quick fix.

 

[mommasita]

hiwaygal: Wishing you a great day, and best of luck on your appointment.. Here is hoping it goes well

 

[hiwaygal]

thanks mommasita

The appointment went okay I guess. Apparently there is a serious breakdown in communications between scheduling staff and what actually goes on with the doctors.

First impression of the endo is good, but we'll see how it goes in the future. I am a little frustrated that she was well aware of how I must feel (all the pain) due to the thyroid problems, her only answer was "be patient".

She asked how I was functioning and I told her barely. Her answer, "be patient, you're going to feel this way for a couple of weeks"

And there's nothing they can do to offer some help? It just seems to lack some compassion.

Ahh...well. She told me nothing I didn't already know, basically gave me a prescription for the thyroid meds, ordered new blood work, and told me to come back in 2 months.

Oh and since my bp was high last week and again today, told me to monitor it on my own. My bp has never been high (consistently) and I'm pretty sure it will get better as I start to feel better. But again, just be patient.

I know there's no magic answer, but I also know that there are options that could have helped me, at least while things get stabilized.

So now I just feel blah and while I'm glad things are back on the right track, I'm just tired, frustrated, and feeling depressed knowing that there's still a long road ahead.

 

[mommasita]

I hear you... It is terrible to not be well, and not know when you will..

Do you have a home monitoring BP device?

I hope you get a little sunshine soon..