Need Some Input: Im Not Making My Doc Appts

[hilbiligrl]

Hey everyone.....

I've been down with a spell since last tuesday. I had a couple of good weeks (i think, heck i cant remember fully) but last tuesday i woke up to a bad, really bad episode that lasted until basically saturday.... sat and sund i felt better, but today im down again (i've been without my meds for the MCAD for 3 days, and i think that might have triggered today)...... my problem is, my luck just doesnt seem to hit at the right times, ever.... and it seems every doc appt, therapist appt, tooth appt, its always a bad day that i can't walk, talk or even drive.....

these people are getting tired of me not showing up to appts.... but i never know what day is going to be good or bad. I felt decent enough yesterday to have the mindset of thinking i would be able to make my therapist appt today, which i so need due to the wishy washy behavior of this disease, as it's throwing me for loops mentally, emotionally and psychologically, but I woke up to another 'bad day'... and as i stand for a few mins, i just have to lay right back down again or else fall in the floor....

i have more than once told each doc/therapist, etc.... that my disease is predictable to the fact that it is VERY UNPREDICTABLE...... and they seem to understand... but as i miss appts.... i know in my heart they are getting tired of it.... but in no way can i help it... as i get tired of it myself.

However, regardless, i do not miss my primary doc appts as he is hard to get in to see and he's really my only hope.... if i have to be carried in, then i just have to be carried in......

How do we deal with this? How do we deal with the guilt of missing so many appointments? How do i get them to truly understand that I cannot plan ANYTHING with having this disease, as i can plan for the next day, then wake up and can't walk......

I couldnt wait to get to my therapist today, just to talk some things out about being so dang sick...... but im in bed, dont have the energy or the strength to shower and clean up.... dirrehea, vomitting, and faintish...... I feel so guilty for missing my kids appts, and my own appts.... and i have no earthly idea what to do. I think my dentist just 'fired' me due to missing the last 2 appts, but i had explained on many occasion that one hour i could be fine and the next i could be on the floor begging for some sort of relief from the suffering..... people just have no clue how much suffering this is..... not even the tiniest amount of a clue.

Sorry.... im at odds with this.... struggled with doc appts for 2 years this month now.... realizing i had the biggest set back where i had to quit everything 2 years ago in Oct and realizing i haven't even improved one bit... only have gotten worse over the past 2 years..... I've never felt so alone in my life.

thanks for the kind ear everybody..... any thoughts or insight?? im so lost.....

tennille

[Katybug]

Hi Tennille. Sorry you are having a hard time. Here were some thoughts as I read your post:

- Can you make arrangements with your therapist to have your appt on the phone instead of in person if you are not well? Then you could still keep your appt but skip all the prep and talk while you are lying down.

- For docs appt that are for your dysautonomia, can you take a cab and have them meet you at the curb with a wheelchair to take you into the office? I know its hard, but I find my doctors work harder on my treatment when they see me having acute symptoms so I do whatever I can to keep my appts on days when I feel bad because I know it actually gets me further with the docs.

I hope this might help. Feel better.

[Guest maia]

I have the same problem. One doc refused to see me anymore, and my primary is not making any efforts to get me in for sick visits despite the fact that when sick it exacerbates the pots and early treatment is necessary. im going to be talking to him about this on my next visit. there has to be something that can be done about this as im sure we are all somewhat in the same boat.

[hilbiligrl]

katybug~ thanks so much for your kind reply. Im thinking, that at the precise time for my therapist appt today, that i'll just call her and see if we can arrange to do it over the phone, starting today, for the days im sickest... but go in person on my good days..... im hoping she will work with me on this.... as i think she would, unless there is certain procedures she has to abide by.

for my DYS appts.... if im at my worse... either hubbs or family helps get me to and from them.... a month or so ago, i was in a spell, barely made it to the doc and he seen the shape i was in just laying there gasping for breath and just wishing the sickness/spell would ease up... very glad doc got to see me that way, but that wasnt the worst of spells.... they called hubbs to come get me home, as i couldn't hold my head up, nor could even drive myself back home.... so, for those appts with the DYS doctor, are usually where i pull out my 'reserves'...... however, my family and hubbs are already doing so much in taking care of the kids, getting them to where they need to be, etc... and i feel like such a burden already....

what's totally kicking me for a loop, is that in my spells, i don't have the strength or energy to even talk???? it's like to even speak, im exhausted within mins..... so you could say im quiet alot (in person that is...) I mean, our best method of communication (speaking) is even affected badly.....

i think i might be getting off subject.... my brain fog is beating me to death here lately too.....

thank you katy..... keeping my fingers crossed that my therapist will do this one on the phone today.....

tennille

Edited September 28, 2011 by corina
removed unnecessary quoting

[stacdliw]

Hilbiligirl, I know exactly how you feel. Luckily, I haven't had to cancel any doctor's appointments due to my health. If need be, I will go to the appointment with no shower and no make-up. My husband is retired and is always willing to take me. However, that is not to say, there have been days that I definitely don't feel like going to a doctor's office and waiting forever to see the doctor for 15 minutes. Most of the time, I just force myself to go, regardless how bad I look or feel ( luckily, I rarely faint).

On the other hand, I have postponed a lot of non-medical needs. I have needed a crown on one of my molars for 5 months, but I have never made the appointment because I have been feeling so bad that I just don't want to put myself through a grueling dental appointment not knowing how I will feel on the day of the procedure.

I have also postponed setting up some counseling sessions. Since I have developed this idiopathic moderate/severe pain disorder which my doctors believe is neuropathy related, I am having more difficulty coping with all of my symptoms. Plus, my husband and I are having some marital problems due to me being sick constantly and that I do nothing to "contribute." However, I'm scared to make an appointment with a counselor not knowing how I will feel on the day of the appointment. Don't know about you, but on a bad day, I surely don't feel like sitting in a chair talking about my problems. On those days, I want to be in bed! It's a CATCH-22-- I need counseling, but I'm too sick and tired to go to the sessions.

I don't know what the answer is. If anyone has one, PLEASE SHARE!

[hilbiligrl]

I have the same problem. One doc refused to see me anymore, and my primary is not making any efforts to get me in for sick visits despite the fact that when sick it exacerbates the pots and early treatment is necessary. im going to be talking to him about this on my next visit. there has to be something that can be done about this as im sure we are all somewhat in the same boat.

I do have a hard time getting in with my primary DYS doc when im in the worst of the spells... as he is also a professor at our local medical school here. So, it makes it hard to get an appt when i need him to see me in the state im in... I actually messaged him through facebook one day to let him know how the mestinon was doing that we were trying. He replied and was concerned and seemed to not be bothered that i contacted him via that method. But, I feel like im treading on some privacy ground as to messaging him through facebook. Im actually gonna ask him if it would be ok if i perhaps, wrote him a weekly 'rap sheet' and emailed it to him..... with some key thoughts and 'theories' in them. I'll have to see if he will be ok with it........ however, if i remember correctly, he said I could email him, at my last visit with him.....

i'll have to check in with him to see if he wouldnt mind that i emailed him weekly or bi-weekly, especially since im his only case with a disease like this.....

thank you maia very much im glad to know that im not the only one in this boat alone, as i have alot of anxiety and panic from the guilt of missing appts.....

tennille

[hilbiligrl]

Bev~ yes! that's how i feel on my bad days, as i have no strength to even speak really and it's as if i forced myself to go, id totally bottom up the rest of the day or worse..... and it's also hard to form sentences and think and speak when im at my sickest and having a bad day.... i already stumble with words, stumble to find them in my head and stumble trying to pronounce them and form sentences..... my therapist notices it everytime, and she knows it stresses me and humiliates me....

im so sorry your health is causing issues with your marriage..... that's one of my biggest fears these past weeks.... as i feel im not contributing to anything.... but i just can't help it at all.... our men just don't understand all this inside us and the massive amount of what we have to deal with 24/7. Sometimes i feel so sick that i just want to crawl of out my skin, or i get that feeling as if someone is pouring hot acid on you and you are desperately trying to get away from it or get it off..... like a defense response.

i too, have had to just go ahead and postpone my dentist appts.... that is, if i can get my dentist back and all.

I will keep you and your hubby in prayers..... that his heart, eyes and mind open up to the severity of this disease and that he remembers, for better for worse, in sickness and in health....

thank you bev, for your reply......

tennille

Edited September 28, 2011 by corina
removed unnecessary quoting

[tinkerbella]

Oh my dear sweet friend,

I feel your pain and suffering, this illness is so darn hard. I send love LOVE, HUGS, and TONS of UNDERSTANDING along with a GIANT HUG ~

I'LL say a prayer for YOU ~ You know I'm only a click of the keyboard away ~ I miss you and all my other FB friends, but glad I got off before

the big changes ~ Here there is always unconditional love and support.

See what doc will see you over the phone or skype with you. I sleep with all my clothes on and pack the night before. Try to make things simple as possible.

They need to see you sick to document it all to make your case. Maybe you can get someone to drive you in, I take a cab. I got charged once for not going and

that was the last time I missed an appointment, unless I had the flu or was in the hospital.

Hang in there, it's one day at a time.... and we're all here for you ~

Love,

BellaMia ~

[hilbiligrl]

ahhh Bella, so good to hear from you You are always so comforting and peaceful. Thank you for the prayers and hugs, as at the last min, i decided to force myself to get to that appointment. I literally got ready in 5 mins and i hadnt taken a shower in a couple of days, (hadn't had the strength) but i threw on clean clothes and brushed my teeth and went. didnt even brush the hair, just pulled it back and went zits and all.... lol. I was glad I made it, and lo and behold i get a text from my mom that she had my son at the doctors and he had broken his finger at football practice..... i didnt know whether to vomit or pass out on my therapist once i got there, i had one heck of meltdown.... but by the time i got home I had used up all my spoons for the day and in the bed I went. Having trouble breathing, which normally means an acute attack ahead.... havent had a breathing issues in a few months and now it's starting up again, one of the symptoms i seriously hate the worse

but made my appoint.... and oh to everyone else: my therapist can't do phone sessions and this was the reason she gave me that i found interesting. As therapists they have to 'see' the patient as they study the body language as the person speaks, therefore appointments cannot be done over the phone. I was disappointed as i would only use them on days i am seriously ill, like here lately. Oh well, i took a stab at it.

Thanks everyone!

Love you bella!

tennille

[lieze]

I'm laughing out loud at your therapists excuse.

Ah-if she could spend one day in your skin huh?

Maybe someone who could come to you like a pastor?

My mother in law is a pastor and I think she used to get " credit" for her home visits.

She would come visit me-then leave a bulletin.

I always thought that was strange but never asked why.

Anyway I'm so sorry you're feeling bad.

I have that same feeling with the talking.

On a bad day I don't have energy for it.

And the guilt yes about not giving enough to anybody.

It's horrible.

I am having difficulty just getting everything signed and in the book bags that need to be in there.

It's quite embarrassing actually and I worry about what the teacher must think.

Hoping you feel better soon. : )

[lizababy]

Tennille,

Does your therapist have experience with chronic illness? While I am not in therapy now, in the past I have done phone sessions. When you have a repoir with a therapist, it becomes a lot less about your body language and more about dealing with how to manage the emotions. Have you considered looking into a therapist/social worker specifically trained in chronic illness and chronic illness management? I would imagine that someone specifically trained/experienced in this area would be very beneficial as I know there are many overlapping symptoms between chronic depression and POTS. (Plus, the depression inducing nature of living with chronic illness!)

~Elizabeth~

[Katybug]

Hi Tenille.

When I was about a year and a half into my chronic illness and with no diagnosis, my boss gave me the best advice anyone has given me to date. She said to me, "You need to be kinder to yourself." I couldn't believe it! I thought surely she was tired of my missing work and having to leave early looking like I was on my death bed. But she told me that it was obvious how sick I was just by looking at me and that she knew I was trying to track down a doctor that could help. She told me that I needed to be as kind and understanding with myself as I was with my employees all of the time and that I needed to stop beating myself up. I took her advice to heart and each time I start to get down on myself about my situation (I am housebound most days), I ask myself "how would I treat my mom or my best friend if she were the person laying here?" Then, I try to treat myself that way.

This also made me completely change my attitude about doctors/healthcare providers. I was not very happy with the medical profession at large because of the poor care I had received from many of them. One in particular had really made me hate doctors (he asked when was the last time I had a boyfriend...like that was the cause of my projectile vomiting) . But, then I started thinking, "If this was my mother or best friend, what would I do?" The answer and the road ahead became clear. If it was one of them, I would not take bad care or treatment as an acceptable answer. I would search high and low to find a doctor that was willing to help and I would FIRE the ones that were uncooperative or just downright rude. So now, I do not persue relationships with any doctor that will not commit to working with me to find answers (and I ask them the first time I meet them...I put them right on the spot). And I am very brutally honest with the ones that commit as to what I need from them at each appointment. I was always raised to "respect" doctors and to be basically meek with them. Not anymore...they work for us, not the other way around. We would not continue to pay for bad service by other service providers, why do we accept it when it comes to our health?

So I write all of this because I hope that you (and all of us) can be kinder to yourself. Care for yourself as you would care for your mother, your best friend, or your children. And that includes what you will and won't accept from healthcare providers. Once I changed my tune with them, I found those providers that meant it when they took the Hypocratic Oath.

I hope you feel better and I hope you take care and I hope you find healthcare providers that want to participate in your wellness.

Many hugs to you,

Katie

[Guest maia]

Hillbillgirl, just an update... one of my doctors just refused to offer any assistance with getting rides to appointments... despite there being programs for just this. yet he continues to be upset with me that i am missing appointments with him and doctors he has referred me to. Unfortunately it seems that -at least from this doctors perspective-being unable to stand and think, etc. is not considered impairments to mobility-which is the criteria-or so i have been told-to get assistance with rides.

(i cant tell you how many times i have told doctors that they could cut off my left leg if that would solve this-which incidentally would be considered a functional impairment) ... expletives...

I find this rather odd-and i use that term loosely-considering standing and thinking are-at least in my opinion-prerequisites to mobility!

sorry, had to vent a little... i think this needs to be addressed with an ADA atty...

[lizababy]

maia,

have you looked into services offered by your township or municipality? In many areas, there are services for people with disabilities programs that are willing to provide such a service. Here (in the Chicago Metro region) we have PACE. While it is our public transit system, they do offer door to door service for people with disabilities. I cannot imagine that such a service is limited to Chicagoland.

[Guest maia]

yup, there are such services. unfortunately they must be initiated by your doctor... neuro said go to primary, cardio said go to primary, everyone says go to primary... 2 years later primary #3 still refuses to treat, acknowledge or assist with pots issues.

[Guest maia]

hilbiligrl, i wonder if your therapist would do an internet session? skype, etc... some have video.

[hilbiligrl]

wow you guys.... i totally had no idea i had some more feedback.... but ive had some very very bedridden, can't even move an inch without feeling like i was taking my last breath... ugh..... i have lots to say and a report on my psych doc who i ONLY get my sleep meds from..... however, im a bit rough and im gonna have to get my mind together to write out an appropriate response to each of you..... so, to be continued

hopefully i can reply back by the end of the day.... lol, maybe....

tennille

and thanks again everyone!!!