Wallowing in a POTShole

[Guest Mary from OH]

Oh, where do I start?? I guess I should start by thanking everyone for bothering to read this and bothering to respond, if you do...

I am definately sinking deeper and deeper into a POTShole and I'm not sure if I'm ever coming out. I feel like crap and I'm tired of feeling like crap. I'm tired of fighting for my health, my daughter's health and everything. I'm just plain tired. Everything is a mess. My house, my marriage, my body, my life... My daughter's GI dr is not properly taking care of her, I'm trying to get someone to listen. No one is listening. I've been doing this for the past 5 1/2 years. I'm just so tired. No one should always have to fight to be treated like a human being and get well. She is just a child. I always put her first and my health needs come last. Often I end up getting sicker than I should and have to play catch up, but that's just what a mother does. Why won't they listen? Why does she have to suffer every day? Why do I have to suffer every day?

I'm sorry for rambling on, but I'm just sinking deeper and deeper and I can't get out.... Tears are streaming down my face as I write this. I just can't take anymore.......

[corina]

Hi Mary, I think you definately need some help, because you have a lot going on. How old is your daughter? Can you get someone to come over and play with her, so that you can rest meanwhile? I also think she needs an other doctor. Do you have some hours during the day that you can take some rest? I think that you could use a psycholigist who is specialised in chronic illness to help you and your daughter. This POTS has it's effect on everyone in your family, maybe you can ask someone to help you doing things to clean your house so that you and your husband can spend some time with your daughter, like watching a movie together that's also very relaxing. I hope you can find a good psychologist who can help you and your daughter, you can't do everything on your own. Well, I think I've said this very well considering I'm in the POTShole myself. Although I have to admit that it's easier telling other people what to do than do it myself

Wish you good luck and don't worry about bothering us, that's what we all are here for: helping eachother out!!!

Corina

[Guest Mary from OH]

Thanks Corina... MONEY.... That's one of the problems too!! Psych services is not well covered on my husband's insurance. Funny thing, I'm a Psych myself, or I used to be in my "former" life...

We have to pay a $300 or $500, I forgot which out-of-pocket deductible, then it is covered 50%. There is no way we can afford that. Plus, right now I've asked (begged) my husband to leave for awhile as he is the one who is causing even more stress in our "family". He doesn't help and just makes more work. It is so draining emotionally and physically. I just can't take it anymore.

His life is all about work. He could care less about the family or what is going on here unless it's convenient for him. I'm so tired of things I could just scream or die, depending on the day. When I was sick before Thanksgiviing and the Urgent Care had thought I was having a stroke the night before and I called him at work the next day still dying from the pain of my migraine that I had had for over a week begging him to take me to ER, his response was "Why?"

I'm just sinking and I can't get out!! I just keep holding onto my daughter, she's 5. She is what keeps me alive. If it weren't for her, I just don't know. I know what you mean about helping others. It is so much easier... Everthing is so much clearer. I tried to start off good this am. I got a little bit of the house cleaned. I was pretty proud of myself. But, then I looked and it's still such a disaster and there's so much I can't do, and her dr still hasn't called me back and I left ANOTHER msg today and and and and......

deeper deeper deeper

[Guest Julia59]

Hi Mary,

I'm so sorry your not doing well lately. I agree with Corina, you should try to find a good psychologist who is experienced with chronically ill patients.

We have Dr. Davis in Toledo, and he has been such a blessing to so many patients with different forms of dysautonomia. He is a friend of Dr. Grubb's and can be TRUSTED. I have been to him for several sessions, and I am thinking about going back to him again, because I have too much going on and I need him to help me sort things out.

Maybe you can find someone to help you with your daughter, so you can sort things out and try to get some kind of order back. I believe you must find someone to talk with who understands this illness. How far are you from Toledo? It might be worth the trip to come and see Dr. Davis, I know others from out of town have see him eaither when they come to see Dr. Grubb, or separately.

Just yesterday I wrote a letter to my congresswoman AGAIN---but this time I also asked for help with my SSDI. I put loads of information on dysautonomia in there.

There are times when I feel like giving up--------BUT I DECIDED I WON'T DO IT.

Someday all of us will get the respect and attention we need.

Hang on-------------I hope things get better for you soon.

If you need someone to talk to----i'll e-mail my ph# to you.

Julie :0)

[geneva]

Hi Mary, I've been in a post holiday potshole so maybe we can all share the space. I just want to say that from your previous posts it is obvious you are a terrific Mom. Being a mom with a chronic illness is tough and I know many on this site do an amazing job. Being a mom with a chronic illness and having a child with one as well is .... just, well ....hard to imagine. Do give yourself the credit for doing everything in your power to help her get better even when it is at your own expense.

The one thing I would suggest is to ASK for the help that you need. I am terrible at this and I know we have many type A personalities on this site and we hate to ask for help. I tried it over the holidays, asking specific tasks to be taken over by others. Much to my surprise they were very pleased to be told what was needed and then did them. Maybe not to my standards, but that is another thing to let go (lol). Corina has some good ideas on what to ask for help from others. Often people just don't know WHAT to do to help those who are ill.....tell them! Find one thing today and call or ask someone to do it...develop the habit. Mary, you must or you will be in that potshole for way too long. That is not good for you or your daughter.

I am sorry your daughter's doctor has let you down. It must be so frustrating but when you are stronger, start the process of getting someone new for her.

I'm beginning to see the light from my potshole and hope you will too soon!

[purplefocus]

Mary,

I am so sorry you are going thru all of this. POTS is enough without all the other things you have stressing you out. I agree with the advice in the other post. I just wanted to add that you aren't alone. We do understand your pain. Vent away. I wish I had other ways of helping.

Paige

[MomtoGiuliana]

Mary

I am so sorry to read this and see that you are still struggling to get your daughter proper care, while also facing your own health challenges. I am very sorry to see that you do not get proper support from your husband.

I remember reading recently how stressful a child's illness can be on his or her mother, to the point of affecting her health. I am not surprised you are struggling so under these circumstances. I know you are an excellent mother who is giving all you can, and more, to your daughter.

Do you have some family members or friends who you can talk to or you can even ask for some help? You definitely need support and are not getting it. If counselling isn't possible, then friends or family really need to help you.

Sometimes it helps to prioritize tasks and to give yourself small, manageable goals each day, week or month. You can't do everything, so don't try to.

Do what you need to do to take care of yourself. When I was incredibly sick with POTS, I felt SO guilty that I wasn't a good enough mother to my daughter. I was so focused on myself, when every day should have been about her, I felt. Then a friend of mine described a metaphor that made sense to me. You are always instructed in those emergency instructions at the onset of an airplane trip that in the event of an airplane emergency where the pressure lowers and the oxygen bags drop,

to place the face mask on yourself first, and then on your child. This is because if you are overcome with lack of oxygen, not only are you useless to yourself, but also to your child's well-being. For preservation of both--you must take care of yourself/stabilize yourself first, so that then you can turn your attention to your child. This is not a selfish act--but the most caring and prudent one! I would remember that metaphor a lot when I was feeling horrible about my parenting.

Hope that doctor calls back and that tomorrow is a better day for you both.

Katherine

[avais1]

They say it is always darkest before the dawn. Hang in there, we are all pulling for you. You are NOT alone. My prayers and thoughts are with you. Strength, love, hope, and friendship to you. You will make it through this, I promise. Here is a little poem for you:

DON'T QUIT

When things go wrong, as they sometimes will

When the road you're trudging, seems all uphill

When the depths are low, and the faults are high

And you want to smile, but have to sigh

When care is pressing you down a bit

Rest if you must, but don't you quit!

Life is queer, with its twists and turns

As every one of us, sometimes learns

And many a failure, turns about

When you might have won, had you stuck it out

Don't give up, when the pace seems slow

You might win, with another blow

Don't Quit!

(sorry, I don't know who the author is).

[kristinp29]

Oh, Mary...tears welled up in my eyes as I read your post and as I'm responding. They're sympathy tears, as I've been there. There was a time that I never thought I would get well, that I would never have a life, that I would be stuck while everyone else went on with their lives and drifted farther and farther away from me.

That was about two years ago. Now, I just finished my first semester of college after being homebound for 2.5 years. I don't have any pain or harsh symptoms anymore. I only battle light fatigue (it's light because I've experienced the kind of fatigue that feels like bricks are deep inside you and you can't get out of bed).

Mary, there's hope. You just have to keep believing, praying, and hoping--even when it feels like you're trapped, there's no way out, and you have nothing left. I know it seems impossible, but somehow you just keep fighting. One day, you'll be amazed by where you are, what you've gotten through, and how strong you were when you thought you couldn't do it anymore.

Send me a message if you need to talk. You're in my prayers.

With Love,

Kristin

[Guest tearose]

Dear Mary, we are listening! We hear you, we are wiping the tears, extending our hands and we are right beside you.

Having dysautunomia makes all things more challenging!!!

I realize there is nothing I can say or do to take this away or make it all better. Forgive me I seem to use stories a lot, it is my way of dealing with life. I can only share my vision with you and hope it will bring one spark of an idea to your dwindling inner fire, one drop of rain to your drying up well waters...

Unless it is "your time" you are not going to stay in that "crap" filled potshole forever!

No body dies in the potshole! I did the research on that!!!

Begin to do what you are doing and start identifying all the crap! Give it a name and make a list of everything big and small and in between and list it all!!! Do you have enough paper? You might want to consider using a roll of toilet paper. Use as much paper as you need. Tape it to the refrig or a mirror. Look at it frequently and own it.

Then, extremely slowly, allow yourself to see beyond all the despair, burdens, troubles, and find one good thing to focus on. It could be taking a warm bath, it could be picking up one dust bunny by hand, it could be the warm embrace of a friend. Just allow yourself to renew your hope.

Then, make a list of all good things in your life. Go back to the crap list. When you are ready, either put it aside, throw it out or flush it!

You are a very strong and smart woman. You will make your way up and out and on to much greater things!

You are worn out. The well has run dry. Allow this rain of tears to replenish the well. After awhile, the rain does stop, the well has water again and the sun does shine.

with you in spirit, tearose

[Ernie]

Hi Mary,

Sorry you are feeling so horrible.

Do you have any volunteer association in your area who could provide you with support?

Ernie

[MightyMouse]

Mary, is there anything you can do to lift your spirits? I used to listen to music that made me feel a little better--and watched good stuff on TV. Since your daughter is so important to you, maybe you two could watch cartoons together?

I hope you find a doctor(s) who is more attentive and skilled at caring for your daughter...and for you.

Nina

[violahen]

Hi mary,

My heart goes out to you. I am so sorry that you are suffering in so many ways. I too highly recommend seeing Dr. ken Davis in Toledo. He is a friend of Dr. Grubbs'...he is a very compassionate man...and very understanding about the money issue a well....I know that from first hand experience. He also works with dysaotonomia patients quite often is is completely up on our struggles.

You sound like you feel so alone with no support. That is a terrible place to be. I suggest not bothering to try to use your last bits of energy to change the people and attitudes around you. Think about YOU....Do what you need FOR you. I suggest sitting down and figuring out what might give you some temporary relief....a drive alone, dinner with a friend, a bath, a movie....do something for yourslef.

I know how hard it is to have hope in the midst of such ****. I also have two children...both healthy...and even to take care of healthy kids is a huge challenge. I can't imagine what you must be going through. Also, my husband, as good as a person as he is, is in complete denial about my health and can't deal with it. It is a huge challenge and has taken a real toll on my marriage as well.

My thoughts are with you. Where in Ohio do you live? I live in Ohio as well.

kristen

[dream02]

I totally understand where you're at! I have been there myself more than once. Luckily for me my kids are now older and can care for themself so I just have to worry about myself and yet that's difficult too! I agree with others that you should find someone to talk to who deals with cronic illness but there are psychologists in most towns that offer help on a sliding fee scale and perhaps you could find help in one of those. I am better off now that I'm divorced since my husband had no sympothy for my disease and doesn't even believe it's real. I wish you luck in dealing with things one day at a time...sometimes one hour or one minute at a time..

Denise

[Jersey Girl]

Dear Mary,

I'm so sorry that you are feeling so bad. You should not get upset that you are feeling so crummy because I think it makes it worse for us. You will "walk through the valley" and come out a stronger person because of it, I'm sure. When I feel particularly horrible I just get into bed with my child and I let him watch TV even if I can't. He still feels close to me and accepts that I don't feel good. You might want to consider family counseling since it is affecting your marriage as well. Martha

[EarthMother]

Hugs to you dear sweet POTS sister. It is hard. You are doing an amazing job. Things are still not getting better. It makes you feel hopeless. There are wonderful posts here with wonderful suggestions. I can really only add my good thoughts to the list.

And perhaps a tiny voice that reminds you to breath. Take just a moment (or more if you like) and Breath In. Think -- I am breathing in. Then Breath Out. Think -- I am breathing out. Do it again, and again. You don't need to change how deep you are breathing or how fast or slow. Just notice your breath. If your mind starts to wander (why am I sitting here breathing when there is so much to get done and so much going wrong!) just notice it and let it drift by like a cloud in the sky as you return to your breath. Breath In. Breath Out. And just be present with your breath.

Sometimes when we really become still with our breathing, we begin to see how everything in our life comes and goes. Our money, our health, our successes and our failures. Everything changes. Just like our breath. It's good to know this in difficult times. It's also good to realize that we don't need to be "in control" of our breath. It just happens -- automagically! Sometimes when we let go -- we notice other aspects of our lives changing right before our eyes.

Good luck on your healing journey.

EM

[steph37822]

oops

[DancingLight]

Mary,

I am having trouble keeping up with posts right now...but I saw yours and wanted to just say that I am thinking of you and sending you my hugs.

I know for me, it always lifts my spirits just knowing how many people are in my corner! Some days, when I am really low, I hang on to every word on this site.

You've got that here, so please keep checking in with us.

Thank you for responding to my surgery post even whilst in the midst of such pain yourself...

I will keep checking in on your post even if I am not up to typing...

Emily

[corina]

Mary,

I've been thinking, since money is an issue and you're a psychologist yourself, maybe you can contact someone you studied with and who you know you can trust. Maybe one of them is willing and able to help you with this. It's just an idea and I know this will exhaust you and you might not want to because it's very hard to ask someone for help, especially when you feel emotionally weak, but maybe you can give it a try. Like Ernie suggested, a volunteer association is a very good idea because they are ready to help people out and they're used to be asked for help. Well, I hope this helped a bit. I'm sorry for all the trouble you have, you don't deserve this. Don't die, just scream and try to hold on,

Corina

[yogini]

Mary,

I am very sorry you are dealing with so much right now. I agree with the others about getting help from friends/family and/or getting counseling if you can somehow find a way to do so. I know this is easier said than done. Also, maybe it would help you if you got away for a few days (either with or without your daughter). Is there is a friend or relative that you can stay with? Sometimes it helps to take a break, so that you can feel refreshed and have a new perspective when you get back.

By the way, I know what you mean about insurance. I would like counseling too and I was waiting until Jan 1 when I switched from an HMO to a PPO. Under the HMO counseling was only a $25 copay, but under the PPO I have to pay for 50% of the cost myself! That is so crazy and frustrating, because the PPO is supposed to be better insurance. So now I don't know what I am going to do. Oh well.

Best wishes,

Rita

[Merrill]

Mary, how are you doing this morning, in the light of a new day? I've been thinking about you--and hoping for some relief from your pain. Is Marissa feeling any better today?

Keeping you and your family in mind,

Merrill

[geneva]

Mary, I also had you on my mind this morning and I'm hoping that you might be feeling a tiny bit stronger today. I hope you and your daughter both had a good nite's sleep.

[Guest Mary from OH]

Thanks everyone for all your replies and suggestions!! It really does help to knw that someone is out there "rooting" for you,

I live near Columbus,OH. All my family lives in Cleveland, about 2 hrs away. My mother is a wonderful support and I talk with her every day. She is "disabled" herself and my father divorced her after 39 years of marriage. (don't get me started....) She now has to work to support herself even though I think it is killing her day by day. But, I digress.

In terms of getting psych help for me and Marissa, I did pursue that avenue when I was not in such a deep POTShole. We "make too much" for help and don't make enough to pay. I'm sure many can relate. In terms of seeing a former collegue, that's really not ethical, but a noble idea.

I did get some housework done this morning, but I am EXHAUSTED!! My body is tingly all over and I feel like I'm going to pass out. I feel nauseous and like I'm going to have an "accident", IYKWIM. I'm shaking and I have an awful migraine. But, other than that, I'm just peachy!

Marissa's dr finally called me back yesterday, well actually not her dr, but the head of GI. Boy, did he get me ticked off. Basically he told me that Marissa just needs to deal with the pain and that there's nothing they can do. He also said that part or most of her pain is probably psychological. I wanted to jump through the phone and rip his head off!! I don't understand how a dr can say something like that with all the dx she has. It's ludicrous!!

Anyhow, I've got to go to the bus stop to get her or I'll be late!!

Thanks again!

You guys are the best!!

[Guest tearose]

Another unbelievable answer from a doctor! As if Marissa would actually want to complain of pain rather than occupy herself with playing or having fun!!!

Mary, keep up the super effort and give yourself major positive self talk!!!

best regards, tearose

[MomtoGiuliana]

To brush off a CHILD's complaint of pain as psychological--that's truly unbelievable.

Mary--glad to know you have some support from your mom even tho she is not close by. You "sound" more positive today. Good to see. We are here for you and hope better days for you and Marissa are near.

Katherine