Who Keeps Up With Regular Checkups?

[jenbooks]

I find myself so tossed by the stresses of this infection--and the downstream results--like MCS and much worse mold sensitivity--along with the life stresses I've endured in recent years like that 2 year period of demolition in my building, leaks, floods, a dentist fracturing my tooth socket etc etc that----

I have a hard time keeping up at all with regular checkups.
I'm a woman. I'm supposed to get a pap smear yearly.
I'm supposed to get a mammogram at least every 2 years (tho I have my concerns about the xray exposure and I hate getting them and my assessment is out on the ultimate RISK of all the x-ray exposure to breast tissue!!)
I would like to get a baseline thermogram (and pay out of pocket) as well
I have to get dental checkups--I have a lot of teeth problems. I need a partial denture. I need to test dental materials for compatability. All kinds of expense to that and time.
I should get a baseline colonoscopy. Although my gut problems have cleared up off gluten--completely. Even so, I should. I'm afraid of the prep given my reaction to salt/c. The preps are very heavy on sodium and stress the kidneys. Besides, I figure it would be a big stress on my system. Some years ago I managed to get a sigmoidoscopy and was proud of myself.
I just went to the ENT today because my mold allergies are acting up with the colder weather and less air circulation. I had her check my ears as I have problems with them after the tooth socket fracture (I don't talk about it) and after a nurse with a home chamber gave me a free hyperbaric session and blew out my other eardrum.
How can I get work done, struggle along, try to look at Atlanta--and keep up with all the above? Some of it is covered by insurance but the dental is not. And even so there are co-pays. I also find most medical visits stressful because I'm "different". Like the ENT says Here's prescription Claritin. But I won't be taking it...I don't do well with drugs.
All the above is in addition to weekly or biweekly trips out to my Long Island holistic doc for IV therapy...and trying to keep up my relationship with my NYC holistic doc, who provides me some other aspects of care. That requires visits, too.
I just can't keep up with it all. And yet I know that preventive care and checkups are important.
Do you all keep up with all the above?

 

[Snez]

Jenbooks, wow, that is quite a list. I can imagine that you would feel overwhelmed with all things need to be done. What is of utmost priority to you in all the above? With the dental issues- what is the most pressing thing that needs to be done? What can be put off until later? Is there any way to gather and plan for extra support for the times when you are likely to have a busy time with appointments and checkups?

I understand the pressures of keeping up appointments and checkups. If you'd asked me 4 months ago whether I could keep up with the necessary checkups etc my answer would be no (I was virtually housebound). Now I am in a better position to be able to do so as my health appears to be improving. I still avoid early morning appointments and try to space them apart so that I don't have too many stresses on in a week.

I have recently managed to get the dreaded pap smear and mammogram done- complicated by the fact that I have had abnormal pap smears in the past and have a lump in my breast (still needs further investigation). All stressful and anxiety provoking, but I did it and am pleased that it's over with.

I have ongoing naturopath and osteopath appointments.

Add to this mix my family's health needs- my daughter's ongoing stomach problems which need a series of investigations.

Like you I don't like doctor's visits- haven't found a good one yet and they are rarely helpful.

I think you are doing an admirable job trying to maintain your body under trying circumstances.

Snez

 

[jenbooks]

Snez congrats on getting your pap and mammo! Major accomplishment.

The thing is, in middle age these are all pretty routine. But yeah it's overwhelming and I guess I should either do things that 1) won't throw me off physically 2) are easiest (a pap I can get in my neighborhood) 3) are most pressing in terms of symptoms

Amazingly nobody else has picked up this thread so I guess everybody else just keeps up with their appts. Eek!

 

[Lily]

I used to do it all.....but.......not anymore....

I sort of evaluate everything all the time dependng on how I'm feeling. I have let mammograms go and the colonoscopy as well (for now anyway)....2 years overdue on the colonoscopy and 1 1/2 years overdue on the mammo...need the dexa scan too, and missed my last dental cleaning.....The rationale I used for skipping the mammo and the colonoscopy is simply this: My overal baselne health is so poor that I would not do anything if I was told I had cancer - I know that I'd never be able to tolerate any treatment. Heck, if I don't have the energy to get the mammogram, I don't have the energy to get treatment for cancer. Until recently I've been able to make routine dental cleanings because they don't require much effort, the last appointment was during a major crash and I couldn't possibly make it. I would hate to wake up with an abcess or need a root canal for something that could have been caught prophylactically and taken care of on my timeframe instead of an urgent situation so I try to keep up with that, and I should reschedule for the routine appointment. I just hate to have to cancel appointments - I feel like such a flake.
I'm rambling Jen, but my point is that I am so ill I don't feel like my baseline health if worth fighting for - does that make sense? I mean why try to fight breast cancer if my quality of life that I'm fight for is where it is right now?? The fight would undoubtedly make me worse, so I'd rather just take my chances.
Of course the possibility of there possibly being a cure for us down the road has made me think twice about some of my decisions, but I think it's still too far off to be hopeful for me, at my age.

Maybe if you could just spread your to-dos out, prioritize them of course and then knock them off one at a time - who cares if it take a year or 2 - we can only do what we can do. Live in the now - do the things that give you the most bang for your buck (or rather most bang for your energy) NOW, and take a chance on the future, if you have to choose.

Best regards....hope I didn't ramble you to death

 

[susan]

Jen, I am the same as you....put it all off. When i do make an appt I usually have to cancel anyway. However I did get breast thermography done. I opened the report and read negative stuff into it and got myself in a a terrible flux for nothing. Why I do nothing about anything now is because I just cant cope with any more bad news ....so i do nothing.

I have developed a new phobia of going to the Dr even tho he is great and has CFS, because he raises his eyebrows about my fast heart rate and high BP and I cant take drugs to do much about it.....so I just panic when I get there. Not worth the bother.

 

[jenbooks]

Hi folks. Thanks for sharing. There are new rules for mammos and pap smears now anyway. See, I'm not convinced that yearly mammos, with breasts squished and x-rays on soft tissue, are healthy. I've seen studies on even chest x-rays increasing chance of cancer if you get them too often. There is a lot more radiation in a breast mammo. If you get those every year from age 40 on, who's to say you aren't actually raising your risk of disease? And as they say, that results in some false positives requiring biopsies. Now, I'm not convinced needle biopsies are safe if you DID have a relatively small, localized malignancy, because the needle is blowing a big hole in it and don't you think cells would escape? I have thought about this all for quite a while and I think the tests we have now are not good. We need better tests--like the PSA one for prostate cancer.

So part of my reason for putting it off is that, and that also, it's such a horrible experience--sitting there with women in robes, spending hours waiting, and seeing such anxiety on all their faces--some just for routine checkups, others with a history of disease. It's just totally yucky.

And then for paps--they are now revising. If you've had normal paps for years, you don't need to be getting them every year. I think when we're younger and sexually active with multiple partners, it's more important perhaps. But to confess, when I was 31 I had one atypical pap smear (just atypical) and I ended up going to someone pricey and aggressive who said did DNA testing, said I had the worst type of HPV that causes cancer, and had "invisible condyloma" and had to get myself lasered etc. I was terrified and at that time not nearly as medically curious/knowledgeable as I am now so I obeyed her. Well it was a disaster I won't go into--she was not competent. Anyway, after I recovered from her horrible treatment, I went down to a library downtown and began to research HPV, and I found studies that showed when women who had lesions on their cervic had those treated, they would find one strain of HPV. Then those monogamous or celibate women would relapse--and with another strain. A lightbulb went off in my head--I said, it's about local immunity, not exposure to strains. We're probably all exposed, it's like wart viruses on our skin. Well, now in the news they're also saying women with HPV and atypical paps should be watched not treated as their immune systems will clear the virus in a year or two, usually.

So you see, we really have to think for ourselves as some of the recommendations are not good for us at all.

Anyway I simply can't keep up with all the checkups. I'm going to try to go in for a pap and breast exam if I can manage it in December, and that's that for the year. I have a lot of dental work to do I can't deal with. I have ear issues with hyperbaric that HAVE to be dealt with but every trip to the ENT really doesn't result in much...

So sometimes I just don't want to go either. I'm already overwhelmed.

 

[jackie]

Hi Jenbooks, Susan, Loldershaw, Snez....morning! I am so terribly crashed and smashed against the wall right now that I'm only allowing myself a short read here...and ONE post every other day!

And I'm pretty darned dissapointed about this restriction...I can tell you! (I've really become very "dependent" on "talking" to all you great people!) Oh well.

Anyway...I have to reply to this question because I can RELATE!!!

I'm seen by my doc every 6 wks. He draws blood (which I react very badly to) checks silly stuff like cholesterol, but also checks cbc, c-reactive protein, kidney and liver function (which is all rising monthly at an alarming rate). Does an EKG and sometimes a Chest X-ray. A few years ago I had a gigantic Cardio work-up, including a 24 hr. Holter Monitor (which showed abnormalities although Cardiologist said they were unexplained, which I know is normal for us Chronics). He also insisted on a CT scan/stress test...with me kicking and screaming and grasping the sweaty, wrinkled pages of all the stats contraindicating such tests...and although I passed - refused to repeat the test a few days later - which I would have FAILED!...proving my point!)

My reg. Doc asks if i'm up to date with mammos/pap and I lie and say of course...because like you Holdershaw...I don't think I could take one more assault to my body in the way of treatment, if necessary.

Then I opened a can of worms when I explained about the new possibility of XMRV (and HE quoted some other stats re: thyroid probs/viruses, higher incidence of thyroid cancers with ME/CFS, etc).

So, a few weeks ago doc ordered new TSH and Thyroid Ultrasound. Now my #'s show hypothyroidism (wants me on Synthroid right away...but that's one more thing I must research first)

And the U.S. showed multiple hypoechoic lesions in one side of the thryroid. The doc said he would re-do the scan and told me to follow up in 1 month...to see if the largest lesion was growing ( right now its only 1/2 a cm and they don't generally do a FNA until they reach 1cm...UNLESS you have risk factors. But how the heck do I evaluate IF I really have risk factors!?)

Now for the "GOOD" part.....he called me in for these results on friday and then broke the news that he could no longer take our HMO - after being with him for 25 years! (and my ins. co would be finding us another dr!) VERY bad timing indeed. SO..my mother (at 93) must break in a new doc, my husband (and he has a tear and califications in his rotator cuff and after his final mri this sat is awaiting surgery) and then there is me and my thyroid! yikes...this is all just a bit too much.

And as of today..we haven't even been ASSIGNED a new doctor! When I called my Ins. Co. yesterday to ask who our dr. was..they said they didn't know yet ( still working on the paperwork)....BUT - "you MUST have a Doctor" they said! "You CAN'T be on our Insurance UNLESS you HAVE A DOCTOR!!!...so "assign me a doctor!" says I..and they say "but we CAN'T yet! - PAPERWORK!"...and so it went....for HOURS!

Here is the"FREAKY" part...(and I cant quote all the details as they are in a research paper I printed out - its in the den - Im in bed, so...) I looked up some stats on the connection between thyroiditis and viruses (Thyroid lesions/cancers etc)..and as my husband and I were reading, we saw the words sprinkled throughout the paper (you know how some words just JUMP out at you!) .."Thyroid Lesions/Cancers...Enteroviruses...HTLV-1/Hashimoto's and Myelopathy".

My husband said he "recognized" the terminology and went into my medical file and we found a Neurological Path report dated Oct 2004, with the results of Neurological testing and the dx of "C-Fiber Neuropathy, Asymmetrical Myelopathy with a possible underlying cause of Para-Proteinemic Polyneuropathy and Para-Neoplastic Neuropathy". I'm also being treated for Chronic Enteroviruses and Shingles, which I.D. Dr. says are located in a VERY LARGE Lymph gland in my NECK?

The suggestion in the report was for a Brain, Head and Neck MRI to investigate the cause of the Myleopathy. Nope!

Right after this report was done THAT Neurologist was removed from our HMO, we were transferred to ANOTHER Neuro and HE decided that these results did NOT warrant an MRI...and just confirmed a dx of ME/CFS (which he caimed accounted for my test results) and moved me on to an I.D. Doc! Still haven't been given that brain/head/neck MRI. And five years later...I'm wondering if some "dots" are about to be connected?!

The worst part is going to be "educating" a new Dr. to the world of ME/CFS.... if I have the energy! It's ONE thing to GO to a Dr. - it's ANOTHER thing to have to FIGHT for accurate results and a dx! And it's altogether ANOTHER - to know when you are ACTUALLY being treated.... and CORRECTLY!?

Jeepers my reply has turned into a RANT (and worth probably 2 or 3 "regular" posts for the day!)....but you asked for it, Jen!

ok - back to the Blankie (and thank God for the Pomeranians!)...take care, my friends!

jackie

 

[willow]

I reckon if I'm not going to take the treatment then I'm not spending my energy doing the testing. Most of treatments would destroy me in minutes, or damage me so much that I wish I were dead.

Hospitals quickly make me feel ill, and that's as a visitor. I haven't been near one for 5 years. My GP's office and most waiting rooms are the same.

I manage to see my dentist for check ups 1-2x annually. It's very calm and quiet there.

When well enough I hope to have my amalgam out. The holistic dentist is lovely. Before and after the appt we chat via email which is much easier for me. She turns off the PCs, lights etc for me too.

Guess it's a cost-benefit analysis, for me mostly cost and the only benefit would be allaying anxiety..... Which i forget about until I realise that most do these tests.

I think the feminist Germaine Greer has an arguement that men wouldn't stand for the prodding, examining and treating that woman are expected to go through.

 

[spit]

Yeah, I'm terrible at keeping up with routine stuff, too. And even not routine stuff, sometimes. I've got a temporary filling that I really need to get a crown on soon, it's been there for nearly a year now. Before my last pap, it had been like 7 years, so I obviously sucked at this stuff even before I got sick. But the illness certainly accents that problem; I really need to have an eye exam, which is no big deal at all, but even that can feel overwhelming to arrange for and remember and manage to go to, depending on how I'm feeling when the appointment time arrives.

It's hard to keep track of everything, and even harder to have the energy to deal with it all. If I ran the universe, anybody with a disabling illness would also have a free personal secretary/shopper/chauffeur.

 

[BEG]

Don't miss the regular check-ups

but even that can feel overwhelming to arrange for and remember and manage to go to, depending on how I'm feeling when the appointment time arrives. It's hard to keep track of everything, and even harder to have the energy to deal with it all.

Of course, spit, you're right on. What an absolute physical drag to get to the routine things when CFS is more than we can handle.

For me, a bone density exam found osteoporoses in my right hip and osteopenia in my left.

A routine mammogram found cancer at an early stage.

A colonoscopy found pre-cancerous polyps.

I'm faithful about my yearly routine exams as well. Best to keep up with everything, and get it taken care of. Our bodies are already carrying an exorbitant burden.

 

[jenbooks]

Given how delicate our health is--did the colonoscopy prep and anesthesia take a toll on you? Did surgery? Thx...

 

[Robin]

Given how delicate our health is--did the colonoscopy prep and anesthesia take a toll on you? Did surgery? Thx...

I haven't had a colonscopy so I can't comment on the prep, but I did have 2 surgeries with twilight sleep type anesthesia (procedural anesthesia) which is what they use for colonoscopies.

The first time was awful. They couldn't wake me up afterward for an hour and even then I was only partially awake getting to the car. The second time I told the anesthesiologist more about CFS and how I have problems with medication, and please use much less. He was very nice about it and agreed, and it was much more tolerable. I was woken up right after surgery and was only mildly sleepy the rest of the day. As I understand it they can use discretion in the level of sedation so that might be something to bear in mind.

As far as regular check ups go: I see my Dr. once a year and he checks cholesterol which has been high in the past, and tell him I still have CFS and he makes a note of it (lol!) so he can sign my disability reviews if necessary.

As far as I know the recommendation for less mammographies is for women who moderate to low risk for breast cancer. Certain things like family history of breast cancer, early onset of menses, having child birth late in life (or no children) increase risk. I would definitely talk to your doctor about it. If you're very high risk the yearly ones might be worth it.

I guess you just have to decide what you're up for and take a little bit at a time.

 

[jenbooks]

Hi Robin. Actually I used to get a sonogram with mammogram as mammograms are not that effective in younger women as breast tissue is dense (premenopausal. I'm still getting periods so I guess I will have a late menopause). Now I see that in the news again. Sonograms are pleasant and safer. There is a type of sonogram they're discussing that is even more effective.

I'm too sick right now to think about it though.

 

[Lily]

My take on mammograms

I have always looked a mammograms the way I do seat belts - IMO, it's just crazy not to do it - breast cancer is much more easily treated and very curable in the early stages (most types).

My mother had breast cancer twice - two primary sites, one at age 44 and the other at age 61. Both were caught early and she had neither radiation or chemo, only surgical treatment. Lucky woman. She lived until age 83 and died of a bout of ulcerative colitis, of alll things!

Being a well educated nurse, I have seen far too many times the difference in catching it at stage one and not.... so would never ever consider not having my annual mammogram. I have instilled this into my daughters (I hope).

However, with my current CFS, things have changed - of course I'm much older no longer in my 40s or 50s so I guess dying of breast cancer isn't really a concern anymore, although I am just as likely to get it as I was before. I just wouldn't have the strength to fight it now - if I don't have the energy to get the mammogram, I certainly don't have the strength to fight it. So our priorities change......but I think if one's priority is to live, then have the mammogram if you can. Just MHO - everyone is different.

Warmest regards,
Linda

PS - I know I responded earlier to this thread, but thought I might have given the impression that I thought it not important to have annual mammograms......would NEVER want anyone to think that - and it doesn't matter to me ONE whit that there are new guidelines - I think they are NUTS and that we will certainly hear more about them in the future.....

 

[jenbooks]

Hi Linda. I feel I had too many mammograms--you will see the radiation actually increases breast cancer risk. I think the current guidelines (every two years) are safer and they match Europe's. I think we need better detection methods anyway. Your Mom may have had DCIS, many such never spread. They are re evaluating that whole diagnosis as well. The other issue I mentioned are needle biopsies. I think a questionable lump should simply be removed with a margin. I'm sure a needle biopsy spreads cancer if a lump is malignant. It punches a big hole and leaves...and surely cells escape.

 

[Lily]

You may be right, Jen

but I don't think the evidence supports that yet, so until then I think more lives will be saved the way it is. This disease strikes many young women who still have young children at home and it is devastating. I think it's more of a risk not to do it at this point. I have too many friends stricken in their 40s and 50s and of course many young one's in their 20s and 30s that the current guidelines couldn't catch anyway. Just lost my daughter's best friend since highschool at age 36. It's nasty.

The additional guideline revision that said monthly self-exams were no longer necessary is simply beyond my comprehension - I'm still waiting for the evidence/rationale to support that decision. Just blows my mind!


Linda

 

[jenbooks]

I don't get that one either except that perhaps so few do monthly exams (including me) and it's so hard if you have, say cystisc breasts, to really get to know your breasts well. I do know my friend's nutritionist had yearly mammograms and they missed the cancer she found herself with monthly exams. She is fine now.

 

[Lily]

Yes

Exactly!!! My mother found her first one herself too.......this happens a lot - and it is well documented. Maglignant lumps are found by patients in between yearly mammograms, and time to treatment is so important.

I just find this new guideline extremely suspect - just a little scary to me after all the progress that has been made with this disease. When I was in nursing school it was a death sentence......and that is soooooo no longer the case with early detection. Can we improve upon the guidelines, methods of detection and treatment? Undoubtedly!!!! We should always be striving to improve - this just didn't seem to be the way......we shall see.

I don't think states with current mandates will be quick to change them, nor do I think insurance companies will be quick to align benefits with the new guidelines..... They are all too aware how much more costly it is to treat an advanced stage patient than an early stage patient. And I have seen that data with my own eyes, as the director of the medical services division of the major US insurer for 21 years.....

I be a hard sell on this one! But I'm still not up for my mammogram.....if my baseline health ever improves I may get it And what a bummer if my CFS gets cured and then I find a stage 2 (or more) breast cancer.... Oh well.....I just follow my intuition.....

 

[klutzo]

Checkups -a hot button for me

I am overwhelmed by the four doctors I have to see all the time in order to get the drugs I need to get from them. I feel they hold me hostage. I regard them as my legal drug dealers, since they aren't good for much else. This includes a PCP, a cardiologist, a gastroenterologist and an opthalmologist. After all of that, I am too sick of doctors to take care of other things. I also hear a ticking clock in my head all the time now, and ask myself constantly, if this were the last day of my life, would I want to spend it in a doctor's office?

I go to a dentist once every 3-5 years since I have excellent teeth and I brush within ten mins. of eating, floss after every meal, and use a water-pik every night.

My long time Gynecologist had to move when the hospital he was with stopped doing births, and he is too far away now. I tried two others but was too overstimulated by all the hustle and bustle and screaming kids in the waiting room. I have not gone for 5 years now and probably will never go again, since I do not have a uterus or a cervix. I give myself a twice yearly outer Gyn exam using a reading light and a magnifying mirror with my legs up the wall! Very undignified, but better than nothing.

I am ANGRY about having been told I must have mammograms yearly from age 30 on, due to fibrocystic breasts. I understand now that each one of those mammos raised my risk of cancer by 2%. That means by the time I was 50, my breast cancer risk was 40% higher than if I had not had them, and it is now known that the test cannot even see though the dense fibrous tissue anyway. I had them every year until I learned this last year, for a cumulative increase in risk of 56%! I agree about thermography being far better and safer, but it is way too expensive for me. I have decided to go only once every 2 years from now on, if that. I already have several things wrong with me that should kill me. Also, a friend of mine found cancer in both of her breasts when putting on her bra one day, only 3 weeks after getting a normal result on a mammogram!

klutzo

 

[jenbooks]

Klutzo I totally get you and agree about the mammos. I was given the same recommendations for cystic breasts, but I was simply not as religious as you about it because I hated mammos. I did insist on sonograms with my mammos much of the time. The thing is if it was like the pap smear--and caught things early and thus was curable, I'd feel more motivation. But as many on here have pointed out, self exams sometimes turned things up that mammos didn't. I *have* read that a lot depends on the person looking at the scan and how experienced they are. I don't like the cumulative radiation either--there has got to be a better diagnostic technique--if they'd put research money into it.