Finding Balance

[SulaBlue]

I have a LOT going on:

Diabetes, hypothyroidism, PCOS, arthritis & degenerative discs in L1-S1 (spine) and associated radiating sciatic pain and muscle weakness, fibromyalgia with associated sleep disfunction (can't sleep at night but can't stay awake during the day, I swear, it's starting to seem more like narcolepsy!), fatigue and pain, and just generally being fat. The latter really annoys me because I know that it exacerbates all the other issues. That, and back in 2001, while I was overweight, I was also still able to train to walk a half-marathon (13+ miles!) and now I can barely walk to the car.

I've been going progressively down hill since 2005 when I was hit by a car while out on my bike. It was a minor thing, and I got up and just had a scraped knee and a dented fender on my bike. About a month later, though, I woke up all stiff and sore in my lower back. I'd had lower back problems before so didn't think much of it. The next day was worse, and by the third day I was in *literal* screaming pain with my back spasming so much and so hard that I'd lay on my side and involuntarily jackknife. I couldn't sleep or get pain relief even with a cocktail of hydrocodone, tzinadine, and 500mg of Aleve all several times a day, to the point that I barely slept for 3 days straight. I had episodes like this a couple more times and was diagnosed with degenerative discs, which have now worsened over the years.

Right now, after having gotten my fibro diagnosis and haven gotten on some medication for that, I'm also now seeing a physical therapist for my back. He's got me getting up and doing 10 reps of this 'bend back over the edge of the sink to stretch/arch your lower back' exercise EVERY HOUR. It's just too much! One wouldn't think something as simple as just stretching would wear me out! The fact that it feels good at the time, but now seems to be aggravating the usually non-painful side of my back to the point that I haven't slept well the past two nights is another matter altogether.

I'm juggling doctors for fibro, spine, physical therapy, and endocrinology. The past few weeks have averaged about 3 appointments a week, requiring my husband to take off work or to leave early or go in late to drive me as I still haven't heard back from VIATrans as of yet (I plan on calling them today). I'm also adding a mental therapist this week and I'm juggling dealing with my SSD Laywers for a disability application appeal (Yeah, all I have going on and I was denied 'due to lack of medical documentation' when part of that lack was a symptom itself because I was so depressed that I barely left my house for a year, to the point of even canceling doctor's appointments!).

How do you balance all your doctors, the demands on your time, and your body's utter lack of energy? We've been eating out more because, frankly, I don't even have the energy some days to bother tossing something in the microwave, or at least not to clean it up afterwards.

I often feel so guilty for putting my husband through so much. He does all the driving, takes out the trash, does the laundry, and does the vast majority of the dishes (though I have to nag him about the latter one rather often). He rarely has time for himself, but I'm either too tired (even on days where I haven't done much), or in too much pain. I know he understands, but every now and then he'll make a comment about wishing he could sleep during the day when he's had a particularly rough night of staying up too late and getting up early, which hurts and makes me feel more guilty.

 

[twiztc]

I had to stop juggling. I was seeing so many different doctors and specialists that at the end of the day couldn't do anything for me. I've tried just about every medication that studies show help Fibro but none of them work for me. So now I just see my pain clinic doc about once a month to get my codeine meds and I have a family doc almost on my doorstep for those once in a while gripes. I see a phisio if my back plays up for too long.
I got so fed up with all the prodding and poking, the stress of that alone was making me worse.
I understand that you have to put up with it all for now so you can get your disability, but once you have then maybe you can cut out some of those visits and relax a while.
Good luck

 

[twiztc]

I had to stop juggling. I was seeing so many different doctors and specialists that at the end of the day couldn't do anything for me. I've tried just about every medication that studies show help Fibro but none of them work for me. So now I just see my pain clinic doc about once a month to get my codeine meds and I have a family doc almost on my doorstep for those once in a while gripes. I see a phisio if my back plays up for too long.
I got so fed up with all the prodding and poking, the stress of that alone was making me worse.
I understand that you have to put up with it all for now so you can get your disability, but once you have then maybe you can cut out some of those visits and relax a while.
Good luck

 

[1sweed]

What do you mean don't press that button? twiztc, I think it means don't press it twice. lol

SulaBlue, Gosh, girl your having a time of it. I hope that the SSD people are paying for all those extra doctor visits. I got to a point where I just said enough is enough. Be sure that each doctor you see and each test that you have, you get a report about it. Ask the doctor for copies of any letters he shares with other doctors and when you have any medical tests done get that report as well.

Write down some of the day-to-day stuff in a journal, and keep it handy when you fill out those darn papers. As for your home life and stress, try to relax. I think the mental professional will help you get a grip on handling all the stressfulness. Do a bit at a time, like peel potatoes in the morning and let them sit in a pot of cold water. Plan your meat and make it simple like hambugers in gravy. Add a vegetable to that, either frozen or canned. Add a simple dessert. Try not to nag your sweet husband, use paper plates and cups. That leaves little clean-up work.

I know how hard it can be. Just hang in there and let me know if I can help.

 

[SulaBlue]

Thanks gals.

And no, SSD isn't paying for diddly. They sent me to THEIR doctors, and of course THOSE doctors are paid by THEM so aren't on my side one little bit!

Physical Therapy is going to be the first thing dropped, as soon as the weather is warmer. Today's visit just felt like I should have been 'assuming the position' to be blunt. $75 for a 15 minute visit that basically amounted to "OK, so, how'd that ONE EXERCISE that the other guy asked you to do work out for you? Ok, well, keep it up and you can also try this." And BOOM. Out of there. I was sent for aqua therapy. I'm STILL not going to be in the pool next time. What the heck!?

The spine specialist that sent me to physical therapy was just as bad! I waited an hour to see her and was in with her for maybe 15 minutes. She looked at my X-rays and my CT scan from 2009 and basically told me she couldn't do anything without a new CT Scan and wrote me up an order like she thought I'd just waltz right upstairs and go get one ($922? I think not!). She sent my insurance a bill for $540!

I'm considering a new PCP as well. She outright refused to do a function assessment for SSD and almost refused to send them my medical records. Yesh. She charged me $25 to sign a slip of paper for handicap parking and to write an Rx for it rather than using a notary. WHAO. n the other hand, if you're sick and she can't squeeze you in she'll do a consult over the phone and call in antibiotics (and I haven't decided if that's a good thing or not, honestly. n the one hand it saves me a copay. On the other, overmedicating colds much?).

The Endo's just as bad in his own way. I was amazed to be in and out in an hour this last time. The time before, it took nearly an hour just to be seen, then I was with him (and interrupted 3 times in the process) for about 15 mins. I mentioned I had some paperwork and he sent me to his PA who made me wait an hour and a half! My original appointment was at 2pm and I finally left at 5:20 - my husband had a 5:30 appointment elsewhere and was livid! I called to complain to the clinic manager and was all but told that it was my fault!

I do like my Rheumatologist though! Other than her, I think it'll be a clean slate once I get SSD sorted out.

I sent a 6 page log of my sleep patterns, weird Wellbutrin-induced dreams (Chasing my professor, Bill Cosby, who'd gone AWOL with 6 of us piled into a Smart Car? Yeeeeah), erratic changes in blood glucose when I started the Gabapentin, and my daily aches and pains to my lawyer to review along with the "Function Assessment" that my doctor's nurse practitioner filled out. She makes me look so horribly disabled that I'm almost afraid they'll look at that sideways and want a hearing.

Most dinners are cooked in the George Foreman these days. It's quick cooking and fairly easy cleanup. We use paper plates but real silverware and glasses. Can't stand plastic silverware and cups, and I do feel guilty creating so much waste. Honestly if he'd just empty the dishwasher once it's clean I could sit and put a couple of things in at a time, but he leaves it sitting there for days because he forgets that he ran it the night prior unless I remind him.

 

[1sweed]

I am just going to say, I sure hope you get this thing straightened out soon, cause I know how that run around works with 15 minute office appointments that cost big bucks. My rheumatologist in Fl, charged me $450. for fifteen minutes. And he wanted my whole history in that time frame with constantly stopping me to ask more questions. I was very much in debt trying to find my diagnosis and it did not as you say help with stress levels.

Your health problems are much worse than mine in lots of ways but I can feel your anger and your pain. Keep your chin up girl, it's a long row to hoe but hope you can last it out.

 

[SulaBlue]

It turns out that insurance companies apparently have an appeals process for things like this. The Spine & Pain Specialist only saw me for 15 mins (plus maybe the 15 mins that her assistant took the questionare in) but charged my insurance for a 1 hour consultation. Suffice to say, "We are not amused."

 

[HeidiLynn3]

Doctor bills sure do add up! I always try to make my appointments later in the day if possible. Mornings are torture for me...I hate to even get out of bed. It seems like you are also going through hell. I also have the problem many times that I can't sleep at night, but day time I could sleep the day away. I need something to help me stay awake. The guilt you feel for being sick is over the top..at least for me. I understand how you feel.

 

[SulaBlue]

Thank you, HeidiLynn - it has been crazy! I'm hoping it's all over soon. I only have one doctor's visit scheduled next week, and that's my mental therapy session which I'm mostly doing to get a diagnosis for SSD, though he may have some suggestions on helping me cope and adapt that I could use. I've been doing much better depression wise since adding gabapentin for the fibro to the wellbutrin that I had for depression. The stress, however... even the therapist just looked boggled by the whole process!

I also need to reschedule my dentist appointment as that got canceled yesterday due to the elevator in the building having gone out, but I'm actually the crazy kind of person that actually looks forward to going to the dentist - possibly because dental issues are the one problem I DON'T have, and usually don't have much to actually scrape out, so I'm in and out really quick.

 

[bself1234]

I also have fibro, degenerative disk and sciatic pain. After two rounds of physical therapy before the fibro diagnosis didn't help at all, my GP sent me to a Doctor of Rehabilitation who told me that she could help me if I did everything she said. The first thing she did was several rounds of trigger point injections in my lower back to loosen it up, followed by heat therapy and a massage. I don't think I had bent over in years because of the pain and my back was completely stiff. The massage was the most painful part but my back did start to loosen up. I did this 4 or 5 times over a couple of months. Then she gave me a cortisone injection into the disk which was a major relief. I then had 10 hour long sessions, twice a week, in a heated pool with jets. I stretched and did water aerobic type moves and used the jets to massage the lower back. I was a new person. I gradually got back to Jazzercise and now I am going strong. I had to go back a few times the first couple of years if things seemed to be tightening up or the sciatic pain began again, but I have been completely pain free now for years. I know that Jazzercise helps to keep the back loose. We have to keep moving. Use it or lose it is so true.

 

[1sweed]

Sula,
I have been meaning to ask you if you had the aqua therapy yet. I would think that being in the pool would be very helpful to you with your back problems. The exercise you can do in the pool like lightly bouncing up and down, and laying on your back would help relax your spine. I know they have other exercises that help to keep you more flexible.

also have you seen the mental health person yet? Anymore word on the SSD stuff. I hope it works out for you. Let us know how things are working out for you. Eating out it is harder to manage weight problems cause all the foods are so yummy. I managed mine better, not great, but better by becoming more vegetarian eating more vegetables and less meat. You don't need those soy subs, I make very good salads and I use rice and noodles, and some meat like venison or quail, fish and salmon. I make soups and stews. Sometimes I buy pork or a beef roast, cook the meal with the meat for flavoring and let my family members eat most of the meat. I know it's hard but eating small portions helps as well. Could you walk on a tread mill at home or at a local gym. You could start out really slow and work up a bit until you feel a bit stronger in the legs. These are just some ideas I thought may or may not work for you.

 

[SulaBlue]

Ugh, that's a whole 'nother round of teeth-gnashing stress, 1sweed!

I went to the first visit and he did an hour long evaluation, testing muscle tone, reflexes, some bit of 'bend this way and oes it hurt more than that way' kind of stuff. Then he gave me one. single. exercise to do NOT in the pool, basically leaning/arching back over the edge of my kitchen sink. So I do that and my back ends up hurting more/differently. I go back in and have a different PT. He asks how the exercise that the first guy gave me worked out and I told him. Then he had me instead lay on my stomach and prop my chest and shoulders up on as many pillows as I could handle, and told me to do that several times a day and he'd see me in a week. Say what? $75 for a 15 minute visit?! THEN he told me I'd probably not be in the pool on the NEXT visit, either as they 'still had stuff to evaluate.'

Yeah. No. I'm so not down with getting ripped off and jerked around yet.

The menta therapist is going ok. He knows I'm there mainly for assistance with SSD, but he's also going to help me with some coping skills.

I cannot do vegetarian. Overall a vegetarian diet tends to be higher in carbohydrates. I'm diabetic, and doing low-carb vegetarian is very, very difficult and involves eating a lot of stuff I just flat out am NOT willing to put in my mouth. Thanks, though.

I cannot walk on a treadmill. I have an elliptical machine but can't use that, either. I have to hold on for dear life and/or end up leaning on the rails too much which ends up hurting my hands and shoulders almost as much as my back.

I got approved for the door-to-door handicap bus service which is $1.95 each way. I can now buy a 16-punch ticket to the local indoor pool for $32. That means each trip to the pool would end up being $6, but it's cheaper than going to a physical therapy place that apparently isn't in any big rush to put me in the water for the aquatherapy I was assigned! On top of that, I called them to question it/complain and they never even bothered to call me back!

 

[ACHY]

SulaBlue, this overcharging happens more than we are aware I think. We rarely know the level of visit we are being charge for until we receive the EOB. We should all be more vigilant about this, as it affects the cost(s) of healthcare!

 

[1sweed]

Well, sula, I guess I will just keep praying that all works out well for you. That thing about the aqua therapy is the pits. If you are promised that you will be in the pool and they keep putting it off it seems you should have a better reason why not. Maybe it has something to do with your being diabetic. Sometimes they worry about infections or other things that can crop up, but you have a right to know why.

I was just suggesting diet and exercise things, but I understand completely why they won't work for you. Everyone is different and we must maintain our health the best way we can. I do hope things start looking up in all of the above topic's and that you feel better soon.

 

[NannieJoy]

SulaBlue, I can very much relate to you, I to have diabetes, arthritis & degenerative discs through out my back and occasional radiating sciatic pain and muscle tenderness, fibromyalgia, sleep apnea, ulcerative colitis along w/migraines. Fortunately my insurances pay for my doctors apptmts. I have my primary, rheumatologist, gastrologist, orthopedic, and am now seeing a weight specialist doctor. I will be praying for you.