Anybody Else Have Trouble Keeping Dr. Appts

[Connie]

Does anyone else have trouble keeping doctor appointments? I had scheduled a doctor appointment with a new cardiologist for my 14 year old son. Today was the second appointment we had to miss because it could did not have the energy to get ready to go. I told them I would call back when he gets better. This year has been worse than ever as far as fatigue and energy levels are concerned. Usually he is better in the summer and gets worse this time of year. This year he did not improve very much at all over the summer. He is having horrible brain fog. He cannot remember anything. He was having horrible chest pain; we went to the hospital on Sunday, December 5. The doctor told us he is pretty sure it is related to POTS. I guess we are lucky this is only the second time we had to go to hospital in 6 years. Today his back was hurting. I think he must have pulled a muscle. He wanted me to put Icy Hot on it to see if it would help. After I put Icy Hot on it, he kept complaining it is getting too hot. After about 5 minutes I checked his back because it said it was starting to itch. Sure enough he was having a reaction to the Icy Hot. Extremely red, looked like he had been burned and was about to blister up. I was it off with soap and cool water after about 5 -10 minutes rinsing the skin with cool water the redness starting going away. Anyone have this type of reaction with Icy Hot?

I was finally able to get an appointment with Dr. Patricia Lugar at Duke for her to evaluate him for mast cell disorder. His appointment is the beginning of June.

Well enough for now. I am wondering if other people have the same problem keeping Dr. appointments. It is so hard to try to stay upbeat and have a positive attitude for him. He is starting to repeat what the cardiologist told us several years ago. It will get a lot worse before it gets better. It is to the point now he feels like he is guinea pig because we try a new medicine just about every appointment. I keep telling him maybe we can find the right combination for him soon.

Is everybody ready for the holidays? Thank you everyone for being here on the forum for us, you are an immense help to me and my mental health. I am so thankful to have found other people who know what I mean when I talk about all the medical struggles with my son.

[sue1234]

I understand. So far, I have physically made it to my appts.(my husband drives, I don't). There are times I don't feel up to it, though. I slump down in chairs, and other times my heart is racing or I feel really lightheaded, but somehow I get through it. AS SOON AS I GET TO THE EXAM ROOM, I have gotten to where I just lay down on the exam table whether I am uncomfortable or not. It feels like it helps get the blood back perfusing my brain so I can think when the doctor comes in. They have all gotten used to me lying down half the visit. The waiting rooms are the biggest hassle!

I do know what you mean, though. Too sick to go to the doctor--sometimes just too hard to muster up the energy and fight gravity.

[Noreen]

I understand. So far, I have physically made it to my appts.(my husband drives, I don't). There are times I don't feel up to it, though. I slump down in chairs, and other times my heart is racing or I feel really lightheaded, but somehow I get through it. AS SOON AS I GET TO THE EXAM ROOM, I have gotten to where I just lay down on the exam table whether I am uncomfortable or not. It feels like it helps get the blood back perfusing my brain so I can think when the doctor comes in. They have all gotten used to me lying down half the visit. The waiting rooms are the biggest hassle!

I do know what you mean, though. Too sick to go to the doctor--sometimes just too hard to muster up the energy and fight gravity.

Sue_

I've wondered how docs would react to that. I have been putting off appts because I don't feel up to driving myself, sitting in a waiting room (none of them have chairs with neck support) and then sitting in an exam room expected to understand whatever they are saying for the 3 minutes we have their attention.

[sue1234]

I have the exam room down, and none of the doctors have made me feel uncomfortable or "stupid" for lying down. Believe me, I have totally lost the embarassment factor at the doctor's office. And, I have to think, so I can remember to ask my questions. Otherwise I don't get much out of the appt.

The hard part is, I haven't yet found a receptionist that will let me go back and lay down earlier than when they were going to call me! It's hard when you feel like fainting and have no where to go.

If I could get to the office and immediately go lay down, it wouldn't bother me to have to wait 45 minutes or an hour. It's just hard doing sitting up in the waiting room.

LUCKILY, the new doctor's group where I am seeing my new endo, cardio and neuro really seem to get me in quick, like within 10 minutes. That is super-fast compared to what I am used to.

[Rachel]

Sometimes it is very hard to go to a doctor's appointment. The whole process is exhausting. Here are some things I do that make it a little easier. When possible, I prepare for the appointment as much as I can ahead of time (printing up directions, writing out questions for the doctor, and getting snacks and gatorated ready to bring along). I always schedule an afternoon appointment unless there isn't one available. I find it much easier to go in the afternoon.

On the day of my appointment I don't bother to get all dressed up or put make up on. That takes too much energy. My husband drives me to the appointment, and he wheels me into the office in my wheelchair. If I am too tired to sit in my wheelchair in the waiting room then I just lie down on the waiting room floor. When they call me, I get back in my wheelchair, and my husband pushes me back. I don't stand on the scale for a weight because it is too tiring, and the nurses don't mind skipping the weight check. Once I am in the exam room I lie down on the table to wait for the doctor. If I am extremelly weak, I stay lying down even after the doctor comes in.

I hope your son will be able to make it to his next appointment, and I hope that the doctor will be able to help him.

Rachel

[potsgirl]

I have a horrible time trying to keep my doctor's appointments. If my boyfriend isn't here to take me, I end up having to cancel waaay too often because I just am too tired or my wrists are hurting and I have to take pain meds for that - which I really shouldn't drive after taking those...I've gotten dropped at a dentist's and a gastro doctor's because I had to cancel so many times. It makes me feel awful! I basically just schedule my appointments now when my boyfriend will be available to take me. Not fun.

J

[Sallysblooms]

I used to have terrible trouble keeping appts. It is sad because that is really when we need help. Now, I always feel good enough to go. Hubby takes me. I have learned to use the wheelchair for long trips and it really has helped me to heal as well as my supplements and going Gluten Free.

[Sarah4444]

I have to travel to Toronto which is about five hours away for many appointments, and this summer when I was too unwell to get up I had to cancel a few of those. I try as hard as I can to make it to my local appointments though - like Rachel I try to schedule them in the afternoon and have someone drive me if they are farther than a few minutes away. I have had some luck with calling ahead and telling them I am feeling particularly bad; at two offices I was allowed to wait lying down in an exam room, and I have conducted several appointments lying down the whole time.

When it's at all possible, I think it's good to go to see doctors when we're very sick because it gives them a better picture of what this is like and adds a bit of urgency to the situation.

[Christy_D]

I try to schedule my son's appointments in the afternoon also. If it is an appointment to his autonomic specialist, I don't let him miss it. He can lay down in the car and put his head on my shoulder in the waiting room. If it is any other appointment, I don't make him go if he really isn't up to it. The later the appointment though, the better.

This is also the worst time of year for my son. It seems every December and February are his worst 2 months. Spring and summer are better for him.

[hilbiligrl]

I thought I was the only one who had this problem! I have an extremely difficult time getting to appts and I forewarn all doctors and therapist, dentist, eye doc, etc that I am too sick alot to make it to an appointment on short notice, as I never know when im gonna have a few good hours here and there. I miss sometimes 2 appts a week. This week I had 5 appts and only made it to 2 of them (but we had an ice storm too). I also always, always make my appts after 2 pm.... there's no way I could make it in the morning time. Even then, it still takes me hours to get ready. Last week i started getting ready at about 7:20 am for an appt at 3:30..... i still didnt get to put on makeup and was just lucky to make it. Now I don't feel so guilty for rescheduling so many!

hilbiligrl