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POTS- Hurting Family


Ladybug
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I just joined yesterday and this is my first "topic"- but it the most important to me. I was diagnosed with POTS in 2000 after I had every test imaginable (spinal tap, CT, MRI, bla, bla, bla) and a neurological resident was telling me there was nothing else they could do (for my headaches), while he was taking my pulse. He knew something was strange, so he sent me to the cardiologist who diagnosed me with POTS. It was my senior year of high school, so I was a "dependent" of my parents. Long story short- tons of medical bills for my FAMILY.

I was totally healthy until that point, and I was a straight A student. My senior year was tough (I missed so much school because I was always in the ER), but I still managed to get a full scholarship to the University of Arizona. I had always planned to be a nurse (almost every woman in my family is a nurse or is in nursing school). However, during my second semester at U of A I started having seizures. This meant I couldn't drive, so someone in my FAMILY had to drive me to school (which was 45 minutes away), or anywhere else for that matter. Worst of all, it meant there was no possibility of becoming a nurse. This semester I finally just had to withdraw completely. Since seizures aren't so common in POTS patients, I had to do two one-week stays in the hospital (one here and one at MAYO clinic in Scottsdale) with electrodes glued to my head. Consequently, my mom had to take those two weeks off from work. The worst part- neither test helped to explain anything; meaning LOTS of money for NOTHING! I hate that my FAMILY has to pay for every test/doctor's visit, but its worse when they don't help (which is so common with POTS, since everybody has different symptoms/solutions).

My FAMILY is awesome and I have a great relationship with my entire FAMILY. Because we are so close, it makes it even harder for them to see me sick. To be honest, I could take the pain, but the worst part for me is seeing my FAMILY hurt. They could care less about the money they have and will continue to spend to make me better; but I see myself as a huge burden. Do any of you ever feel that way? I feel useless because I can't go to school anymore (meaning I lost my scholarship) and I can't work- meaning I totally depend on my family. Most people who are 21 are out having fun and working toward there future, while I lie on my couch and hope I have enough energy to take a shower.

I'm sorry this is so long, but I just had to get that out. I have been really depressed this week, but finding this site yesterday helped lift some of that- because all of you really know what I'm going through- and I REALLY need that right now. I hate telling or letting my FAMILY see how depressed I am, because I don't want to make THEM feel any worse than they already do. I would love to chat or receive any suggestions. I'm at a really low point right now, and I could use ANY help you are willing to give me. Thanks!

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I can't speak for everyone, but I can tell you that, YES, sometimes I feel that I am a big drain on my spouse. This was especially the case during the year that I couldn't work at all.

Don't give up hope on your dreams. You may find a way to work things out so that you can complete school.

Welcome to the board, but sorry that it's because you share this funky illness with the rest of us.

Nina:)

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Hi Ladybug.

I am so sorry that you are feeling down. I am currently out of work now due to POTS which is putting a lot of strain on my husband. I also had my first child 11 months ago and I can not even take care of him without someone else being here to supervise (because I pass out all the time).

I know it is hard to believe right now, but there will be good days ahead. Just make sure to take advantage of the good days and relax on the bad. Are you currently on any medications to help you have more good days? Maybe they need to be regulated.

Make sure to speak with your Doctor regarding the depression you are currrently dealing with....this is also a symptom of POTS.

Let me know if you need anything at all and I will try to help.

Take care!

Susan

scantan@columbus.rr.com

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Ditto here too ladybug, I haven't worked in a couple of years now, except for part time jobs here and there, that I usually have to give up because of my illness. My husband says my job now is to just take care of myself. It sounds like you have a wonderful support system and that is wonderful, we all need that. Let your family love and support you, hopefully brighter days are coming.

feel free to email me whenever if you want to chat.

Sue

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Ladybug

I understand that it is so hard to feel such a burden. At age 34 I had to totally rely on my mother due to POTS. My daughter was born in October 2002 and my mother lived with us for six months, taking care of my newborn and of me. I went undiagnosed for months and was so ill, like you, most days I had to find the energy simply to take a shower. There were some days that were hard for my mother, but it also was a time to bring us closer together, and for her to develop a strong bond with her granddaughter, since we would never have spent so much time together otherwise. But, yes, I felt so much guilt, about the burden on my mother, husband and daughter, and I understand how you feel. I agree with what everyone has said--let your family love you and care for you as you battle this and, most likely, get to a good level of recovery. It is a long long road for many of us.

Perhaps your medications need to be re-evaluated. Some POTS meds cause depression as a side-effect and that should be reviewed by your doctor b/c it could be corrected. It may be that the treatment you are on isn't working for you, and your doctor and you may need to try some other treatments.

Regarding the seizures...I had seizure-like experiences too when my POTS was really bad. It was so strange, and there was never any explanation for it, even though I had a pretty thorough neurological work up. I don't have them any more.

Have you read *Spontaneous Healing* by Dr. Weil? I always recommend this book, not b/c he addresses POTS, but b/c it is a book that demonstrates how capable the human body is of healing itself, and he does address the autonomic nervous system. It's such a hopeful and inspiring book, and it also provides practical background on alternative healing practices. He promotes breathing exercises--and even if you feel too weak to do much else, you can try them. They helped me, I believe. (When I was really sick, I also saw a hypnotherapist a few times who taught me breathing exercises and did biofeedback so I could learn to really relax my body--so important for the healing process.)

Please keep writing whenever you want to. We're here for you!

Katherine

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Hi Ladybug!

I'm sorry you have to suffer with us and at such a young age too! :angry:

I'm 30 and a single mom of two ( 11 & 4 yr old girls) I depend on friends and family WAY more than I'd like to but am actually not safe home alone with my little one when I'm sick!

I COMPLETELY understand feeling like a burden but please be thankful for the fact that YOU feel like one and that your FAMILY doesn't see you that way!! It shows how much love you all have for each other and that is more important!

We may never know why we have been chosen for this but it is for a reason and your family doesnt see it as a bad thing to have to help you they hurt because they cant help you but feeling guilty only can make your symptoms stronger and if you're not already on depression meds then you need to tell your Dr that you might need them. We ALL experience depression with this it IS a symptom and NOT something to be ashamed of!

Feel free to e-mail me anytime you need to vent that's what I'm here for and it will get easier to handle when you have others who are going through the same thing to lean on!

Hugs!!

Deanna

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ladybug, I completly know what you are going through. Im 20 and I was dxed 4 years ago. My sypmtoms have been under control for the most part. Im lucky not to have it as severe as some of the other members do. But for the past month or so I have been doing really bad. Trips to the ER missing work etc. I had to take a leave of absence which is bad because my husband and I just bought a new house. I was really afraid that he would be mad at me, but he has actually been really supportive and told me that it would be ok and that we would figure something out. We have had to borrow a lot of money from his parents. We joke about it sometimes. At first I was afraid to talk to him about it but once I said something its like the lines of communication were finally open. He has even agreed to come to my next drs appt with me (he hates the dr and will never go himself). And he has suggested that I get a less stressful job. I am currently in retail management and he is going to ask around and see if anyone needs a secretary or anything. Your family is there for you. Just talk to them. They will love you no matter what.

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To all who have responded, I feel like "Thank You" is not enough; but I GREATLY appreciate all of your support. You have no idea how much it has helped. When I saw that I had so many responses (and because of your kind words), I began to cry. I know now that there are people who TRULY understand what I'm going through (because you are too), and more importantly, people who care. Before I had POTS I was the most optimistic person in the world, and I hate that I'm losing that quality (which I hope to gain back soon). However, I still believe that God has a plan for me, that includes being sick, and I will grow from this experience. My hope is that I will be able to help someone, they way you all have helped me.

Thank you, Lisa

P.S. I have talked to my doctor, who has changed my meds. Unfortunatly, at this time it is more important to control my pain in order to keep me out of the ER (since they told me they could no longer treat me b/c they thought I was a drug seeker- insult to injury).

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Lisa, you may find your optomism again, really! I went through a very hard time between about ages 26 to 30... My symptoms were full-on and I didn't get diagnosed until :) I think I was 32? It took me a long time to cope with feeling this way every day...but eventually, I found ways to feel better.

First, my happy attitude finally kicked back in. Second. I started to find some ways to not always be so sick, even before diagnosis. I found eating certain things helped, like nacho chips (nice and salty, so it makes sense now!), and staying hydrated. Third, staying fit as possilbe even when I feel crappy. And, of course, REST. For some reason, that has been the hardest one to do. I'm a multitasker from way back and I had to LEARN how to sit still on the inside.

I know that my very first coping mechanism, from childhood onward, was *never* stay still. Isn't that funky how the body figures stuff out before your mind does? I used to make my family laugh because even when I was supposed to be still, I'd be bouncing on my toes (ha! those calves sure did help pump my blood back up North).

Nina :)

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Hi Ladybug, Oh I'm so sorry to hear you are going through this so young. My POTs started (undiagnosed) when I was about two. I had peti-mal seizures that came out of no where. I did not shake, but I would hear a loud buzz, the room would go dark, and occasionally I would pass out. I had a grandmal seizure in junior high, went through series of painful and annoying tests, and then gave up on doctors.

For me things sort of changed for the better as I entered college. I still had the headaches though, but the seizures went away. I was officially diagnosed with POTS about 3 years ago. Because of my past history with seizures I was put on Topomax to prevent seizures and Toperal (beta blocker) for my POTS and to prevent migraines. This concoction really seemed to work for me, maybe it would help you as well.

As for the college thing....I currently work at a college. We have a Center for Learning Assistance. I'm sure a simple doctor's note regarding your headaches and seizures would qualify you for learning assistance. This could mean having permission to miss classes for illness, and doing homework and assignments directly from your computer instead of attending classes. If you have a disability, I believe the college must make acceptions to its curriculum in order for you to fullfil your requirements. Please look into this before you give up hope. You may also wish to look into other nursing options. My Mother works for our local hospital as a Parish Nurse. She organizes volunteer nurses at area churches to check on their parishoners and give weekly tests and blood pressure readings. I'm sure you will find many options in nursing without having to work in a hospital on your feet for 12 hour shifts.

Please don't give up hope. I just joined this site and the people here have so much more knowledge than I. But I do know that these POTS things seem unanimously to move in stages in each person's life. Mine was very bad as a child, fabulous in my 20s, and have moved on to migraines and other things after having children. I don't think it's ever really "over", you just wake up one day and say, "Hey, I don't feel like crap today!"

It sounds like your family loves you and understands what is going on. I'm sure you would do the same for your children. Hang in there!

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Hi Ladybug,

DITTO to what everyone else has said!

I'm so sorry to hear that you are feeling badly. Just know that you aren't alone and that you will find lots of support here by people who know exactly what you are going through.

Here is a little about me so that you know I DO understand what you are going through.---- I am a 37 yr old RN and I was just diagnosed with POTS recently. I started having symptoms at the age of 18. Up until that point I was very athletic and energetic. Since, I have not been able to do much physical activity at all. I can relate to you when you say that people your age should be out having fun, and the last thing you should have to worry about at that age is your health. I got married at the early age of 17( 10 days out of high school) and then 14 months later had my first child-which is when my POTS symptoms first started. I have been misdiagnosed for 19 yrs. Talk about depressing!!!! I was beginning to think this thing was all in my head.

I know how you feel and I hurt for you because it isn't fair. About school, I too was in nursing school-the first time-and had to withdrawl because I was put in the hospital. My dx at that time was syncope(passing out). But I think they thought I was just having a "nervous breakdown". I wasn't able to go back to school for a few years but I finally did and got my RN in 96. It wasn't easy and many times I wanted to quit but I didn't and for that I am so thankful. So PLEASE don't give up on your dreams!!Over the past year my symptoms have really gotten worse, Im not sure just why but was FINALLY diagnosed in Nov. I go to see DR. GRUBB in Ohio in July and I am hoping that he will be able to help some. I am on atenolol and clonopin right now. I have been on the atenolol for 17yrs-it is a beta-blocker which helps to keep my heartrate down somewhat. I couldn't function without it. The clonopin is for anxiety because this whole thing makes me anxious-especially when your heart is racing, etc.

My advice to you is to be thankful that you have such a wonderful, supportive family. It sounds like they love you so much!! And yes, I think most-if not all-of us POTS folks have many feelings of guilt. I know that is one of my main obstacles right now is to try and get over the guilt of not being able to work full-time(sometimes not much at all!), be a great mom, wife, housekeeper, cook, etc but please try and not feel guilty. It isn't your fault and it is out of your control-don't let yourself go down the guilt trip road. It only makes it worse.

ANYTIME you need us, just let us know. I get so much support from this site and I only found it less than 2 weeks ago but it sure does help. Even if you don't respond sometimes just get on here and read what everyone else has to say.

Take care and be thankful for your family-which I know you are- and don't beat yourself up about anything. Your life probably will change somewhat with POTS but don't ever give up on your dreams-they just may be a little harder for you to obtain BUUUUT you CAN do it!! I'm routing for you.

You will be in my prayers as well as everyone else with this crazy POTS thing!!

Danelle

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