Didn't Realize How Hard It Is To Go To Dr's By Myself

[janiedelite]

I've been trying to get into my gyno for 5 months to get my yearly female exam, but she's been ill herself and I've had several cancellations. So I figured I'd just get it done by my PCP, who also facilitates getting treatment for my POTS. I always bring someone with me to Dr's appointments but didn't today because I was feeling well enough to drive myself and I was having my pap and all that stuff done. My PCP is always patient and listens to me and facilitated all my disability paperwork too.

So she asks if I could go back to work as a triage nurse, as I would be working sitting down and using the phone (I think she meant like a call center nurse). For those of you who lost your ability to work because of dysautonomia, I'm sure you can understand how painful it is to have to justify not being able to work. I just don't think she understood how tiring small tasks, like talking, can be with this disease. So I told her how talking makes me flush, BP rises, and I get so tired. I told her that I've thought about working many times, but I would have to have a job with flexible hours, short shifts, and I need to call in sick often. Then, I explained that I physically couldn't work full-time anyway, and that small activities make me tired for several days afterward. I told her that I probably could work a few hours at a time, if I was feeling well enough, but I couldn't do anything else because I'd be resting to recover and prepare for my next shift.

I feel like this was a very inadequate explanation. I mean, could I have been more descriptive than just saying activity made me "tired?" How about nauseated, brain fogged, painful, ...? I wish I could have explained myself better and when I see her again in another 6 months, I'll have someone else with me who can help me answer these questions. When she initially asked how I was doing I told her I was doing well, because compared to my worst days I was pretty good! Maybe I should act more sick.

On my way out of the exam room, I checked myself in the mirror and from my chest up was bright pink. My skin burns so much. Even my eyelids and my ears are flushed. Now I'm wiped out. Maybe I should have let her know how long it takes me to recover from going to the doctor?!

[Guest tearose]

We understand. Over time, if you can, you can share a typical week. As we know, it is not just the task we do but the planning ahead of time and the resting needed afterwards that make a task successful.

I helped my son last Sunday and Monday with some packing of boxes and it took to just this evening to finally feel physically recovered! All others will remember is that I helped my son. Only close loved ones and I know and see what it really takes.

hang in there,

tearose

[futurehope]

Didn't Realize How Hard It Is To Go To Dr's By Myself

It sure is. I just wrote my rant about my experience talking to a dimwit today. Yes, it's tiring. There's a lot of explaining we have to do.

[janiedelite]

Thanks, guys. Tearose, it is so true that it's the ones who see us every day who understand the toll that a normal activity takes on us. I really think that my doctor wants to understand, I just didn't think we'd be talking about disability since I was there for a gynecology exam. I've actually got a document saved in my computer called "a day in my life" which describes the planning, energy and time it takes for each activity. My next appointment I'll bring it with me. This doctor has always believed me and provided referrals to at least 8 specialists when I first got sick. I think she really is just trying to help me and understand where I'm coming from.

Hi FutureHope. Yes, it's tiring, and most of all I feel so helpless when I get overwhelmed by answering a questing like "what kind of work could you do." I used to be so quick and had answers for everything. If I could just explain how taxing it is to explain these things...

My mom has been disabled for the past several years because of her carcinoid syndrome. I go with her to all her appointments because she gets overwhelmed with questions like these too. It's so helpful to have someone who can put into words for you the struggles you have every day. I think the doctors believe you more when you have someone else with you to validate your symptoms.

Thanks you guys, hubby came home and put in our portable A/C unit so I'm resting comfortably.

[bjt22]

It's hard for anyone who is relatively healthy and "normal" to understand what dealing with any debilitating illness is like.

A few years ago, someone invented some kind of contraption that would demonstrate to doctors what it felt like to have heart failure. Apparently, this was considered a good thing because so many doctors, many of them cardiologists, just couldn't grasp what it was like to live with such a disease on a daily basis. Since our symptoms are so similar, I wouldn't mind having one of those contraptions myself....ofcourse, I'd have to take someone along with me to doctors' appointments to tote it around!

[janiedelite]

Yes! It's easy for some people to look at our symptoms and say well, why can't they just push through that... but when you live with this day in and day out, there's not much to push towards except more fatigue.

I just want to thank everyone on here for their kind words and support. I'm tearing up as I realize that there is a whole world of people "out there" who understand how I feel living with this isolating and complicated disease. You guys are the best!

[janiedelite]

So last night I had these small red bumps pop up all over my neck, behind my ears and on my chest and cheeks. They burn and itch, but not horribly. Benadryl didn't take them away. I showed them to my mom this morning and she said it was a heat rash. When I flush, like I did at the Dr's yesterday, my skin gets so red and hot so I guess it makes sense I'd get a heat rash. I don't have it anywhere else on my body and my temp at the Dr's was only 96.8 F. My body can be cold while my skin is so hot. It feels horrible and I feel like I have an adrenaline hangover today.

Anybody else get a rash like this from flushing?

[summer]

I can sooo relate to your difficulty in explaining this to doctors, employers, etc. I really encourage you to stand your ground, and not be pushed back before you are ready. Nursing is physically and cognitively demanding. I am presently trying to work 2 hours at a time, doing mostly non-nursing duties, and I am finding this really difficult.

I am doing "sit-down" work, but the concentration required really takes a toll on me. Some of my co-workers who see that I am doing some work, have all kinds of suggestions of things I could do like transcribing orders, reviewing medication profiles, double checking med sheets at the beginning of the month. I really am not able to do these things and it is so hard and embarassing to try to explain this. It adds to the stress, which of course, is even more tiring. I am becoming more and more convinced that I am not going to be able to return to this type of work - even sitting.

There is so much pressure to return with nursing shortages, etc. My co-workers also do not understand how it makes me feel to be there doing non-nursing tasks while they talk about how they are working short staffed that day, or how they are not able to get vacation time because of staffing issues. I feel a lot of guilt when they talk about these things around me. They do not hesitate to ask when I think I will be back to full duties.

As hard as it was to be off work, I am finding it even harder to be back, and not able to do what I was trained to do. Take your time, hold your ground, and get better if you can. If not, don't go back unless they offer you something that you are sure will not compromise your health. So sorry you are going though this too - you totally have my empathy.

I really hope you are starting to feel better. I also would be flushed, probably for the rest of the day, after a stressful appointment, and I have certainly had some where I did not feel like I did a very good job of explaining myself.

Adrenaline hangover!!! I know exactly the feeling you are talking about. Take good care!!

Summer

[janiedelite]

Thanks Summer! Man, my skin is hurting so much today. I haven't had a bad flush like I did yesterday for such a long time. My skin feels like it's been grated by a cheese grater all over. I think another name for this is allodynia/hyperesthesia. I forget how sensitive my body is to stress until something like this happens. Work is just NOT an option for me right now.

I've seen other co-workers struggle with chronic illness and heard the comments the other nurses make and the lack of understanding they can exhibit. Good for you for pushing through and doing what you're capable of! Don't try to do more than you're able. I'd be afraid to have the duty of verifying meds or orders because my ability to think is so impaired. Stick your ground for safety's sake!

[tinkerbella]

i know all too well what you mean as i go though going to my appointments alone and I have so many a week my head spins. now they are all by cab a shared cab so the ride is very long tiring and now makes me nauseas. by the time i'm back home i crawl back in bed. all appointment turn into a all day exhausting affair alone. everything is complicated, and if your bright enough to document and type, fill out your own forms watch out as you might just be able to work. i can't fill anything out anymore and typing here is a constant struggle till my dragon voice to text is fixed next week. i starting to get so confused ordering my scripts, constant rechecking that they didn't overdose like before or short change me with pills. and yesterday my topamax went generic. even that upset me.

setting up all my cabs ride even confuses the person i speak too and then she feels sorry for me. Living alone stinks, i need a full time secretary, nurse's aide, house keeper, companion, and now i just gone to the doc and he thought i had gotten better, but i'm worse. it happened again to me yesterday in front of my daughter and granddaughter age 4 i couldn't breathe after trying to dig up a simple plant from my garden. my granddaughter went to get water and salt and i still could not breath she forced me to drink and then GOD LOVE HER, she started pouring salt down my shirt and in my hair and i tried to make her stop and she said no you need it. i'm still trying to recover it's like a tornado hits my body on a daily basis, only the red cross can't give me any help.

it's hard for all of us but being alone is the worst of all. i fell last week and i'm feeling like i've been run over by a truck.

i pray that there i a miracle out there for all of us.

blessings and love~

bellamia~

[janiedelite]

Bella Mia,

Thank you for sharing that precious story about your little granddaughter. I think you've shared about her before. She definitely sounds like she's good medicine. That's what I tell my hubby, that he's my best medicine.

I just read the profile you wrote about yourself. You certainly have an inspirational way of writing. Thank you for sharing about your experiences. I just woke up, having had an adrenaline-filled sleep full of body jerks and burning skin. I was feeling rather pessimistic about things this morning til I read your post and profile. Thank you!

[tinkerbella]

I just woke up, having had an adrenaline-filled sleep full of body jerks and burning skin.

thankful

Thankful,

Thanks for your kind words. You made my day!

I have nights like that and also don't sleep much at all. Do you know why that happens that our body jerks and burning skin?

My PC said to ask the neuro and that's in mid June. I have so much going on till then.

I feel like I'm starting to get Parkinson's. All seems to be on the left side of the body. My hand they hit a nerve at hydration about a month ago but the rest of me. I can't figure this out as it's different from the falling in a hole kind of thing when one is starting to fall asleep.

Any ideas or info I'd be very thankful to get.

Blessings and Love to all~

BellaMia~

[janiedelite]

BellaMia,

You're welcome! I wish I knew about the jerks and burning skin. I've been told that I have a hyperadrenergic response to my POTS. Days when I'm more POTSy, the adrenaline kicks in (tremors, flushing, high BP) and I notice more of the burning skin and disrupted sleep. I've also been told I have small fiber neuropathy which the doc said is why my skin burns and is so sensitive. My skin today feels like it's been rubbed over with sandpaper all over. I can't wear my hair down anymore because my neck is so sensitive. I really think it's all POTS-related because I'm forcing fluids and I'll feel a bit better after I've chugged another glass. Then I pee it all out and feel like before.

Do you have tremors? Do your tremors get worse with stress? Do your tremors subside while you sleep? When my POTS is worse, my adrenaline flares which causes more tremors. I think I read somewhere that if your tremors subside at night/while you sleep, you probably don't have Parkinson's but don't quote me. My mom and grandma and great grandma all got tremors in their 50's (essential benign tremors). I'm 35, but since my body is falling apart at a fast rate I guess I got the tremors earlier in life .

When in doubt, check it out! (with the doctor) . Take care!

[all4family]

Hi Janie,

I am so sorry your appointment didn't go better. I wish there was a really good way we could let people know how hard this thing is. I just had an experience tonight where we went to costco with a kid who is spening the night with my kids, and we didn't have much time, so I skipped the cart. Well by the end of the store I was pretty bad, but I made it. Then we had to stop at lowe's for some stuff, and on the way in my kids friend said "Please get the cart, I don't want to see you faint again." I had forgotten he had seen me faint. It just goes to show that unless you spend time with someone with this illness you can't truly appreciate how unpredictable and debilitating it is. People (like your doctor) might see you at a good moment and think well your doing well enough to do something. But that doesn't say how you will feel later. And after dealing with this for a long time I think we just become good at not showing how we feel so much.

I've been pretty good for a few weeks, and I could have easily held down a job. As long as I could lay down when I needed, could work at my own pace, and when I became confused, taken a nap, so I could go on with the day. (and this was when I felt GOOD!) Even feeling good I have to really work around being sick to accomplish anything. I do think it is a good idea to take someone to the doctor's with you, who see's your struggles.

Take care,

Suzy

[janiedelite]

Thanks Suzy. It's good to have you back here again, although I wish you were feeling better.

Janie

[Dawg Tired]

I know exactly what you mean. For me, just getting out of the house wears me out. Even the walk to the mailbox.