New people here

[briarrose]

Hello

Some of you know me as briarrose & some know me as Steph. Many haven't seen much of me the last several months and that's probably a very good thing.

I'm terribly sorry that I haven't posted & welcomed all of the new people. I've barely been skimming the boards the last few months because I've felt so poorly and simply unable to concentrate to read let alone respond. I'm happy to answer questions if I have any knowledge about your situation or can research it for you.

I don't have a very good understanding of Chiari but that doesn't mean that I'm not willing to be enlightened and for those who suffer with Dysautonomia we usually have pretty similiar symptoms.

I can sometimes sound harsh in my posts but I honestly don't mean too. Sometimes I'm not clear enough about my meaning or I'm so tired I just say what's on my mind without taking the time to make it flowery, that's just who I am. Lately I've been very forgetful and just plain brain dead.

I'm a single mom of 6 children. I work full time and have a volunteer research medical information project that I work on when I'm feeling decent. I use to go to school too before I got sick, I'm dying to finish but realize some of my limitations. In fact before I developed the final stages leading into POTS; I could go 20 hours a day most of the time. And just because the kids are back in school that doesn't give me any more time on my hands as I'm trying to go to their activities and support them in their endeavors.

At the end of June I ended up in the emergency department with severe Stomach pains and was admitted. In early August I travelled to see my POTS doc. In late August or early September I ended up back in the Emergency department a day after I had an endoscopy done for the stomach issues. Somehow I herniated several of discs in my back while I was still trying to sleep off the medication from the endoscopy (hmmm.) I've been in PT and still trying to work as close to full time as possible to support my kids. I've also had several new symptoms and am not sure what to make of them (like shooting/burning pain up my spine above where my back is herniated. Muscle spasms from my neck to my feet that at times can burn. And now joint stiffness among other new problems.)

I was once new and I relied on everyones support and I had such a need and hunger for information. I read everything about POTS, Dysautonomia or one of my millions of symptoms. I'm trying to think of ways to make a difference for others that currently have the illness and those that will join us in the future. The most important thing to me regarding this illness is informing the thousands out there that are sick and don't have a clue what's wrong with them. I also enjoy being able to find information or articles for people.

I'm sorry to make this post so long and I'm not sure I said everything I wanted. I'm not purposely trying to be neglectful of anyone and I'm sorry if some of you have felt that way.

Take care

Steph

[Dizzy Dame]

Hi steph,

I'm new to the forum, but it's already a lifesaver. I just don't know what I'd do without it. It's good to meet you, and I'm sorry to hear you've had such a terrible time. I hope you're on the up and up though.

Take care,

Lauren

[corina]

hi steph,

it's nice to hear from you again! but you know that you don't need to appologize for not being around. i think we always hope that people are quiet for some time because they feel better. i'm sorry that that wasn't the case! being a mom for 6 is a very huge job on it's own, without having to work and having POTS as well. you must be a great mommy as you're supporting them as much as you can as well!!!!!

corina

[briarrose]

Welcome Lauren! You're right this forum is a huge lifesaver and a really nice large family to have here. I've made some really good friends here and I hope to keep it up. I Hope to talk with you in the near future.

Thank you Corina for your post, it's always so nice to have such great support and understanding here.

I felt horrible when I read ChiariMSwithPOTS post about not feeling listened too. I realized that I had better say something, explain I guess because I haven't felt well enough to post much. I've even started posts and erased them because I started falling asleep while writing and couldn't finish

I think I'm a pretty good mom but nobody is perfect and being a mom is a tough job without a chronic illness like this. I'm fortunate that my youngest is now 14 and is in high school. I have 1 away at college and 5 still at home. So even as they get older they are challenging in a different way and let me tell you what it's like to have 3 moody, emotional teenage girls under one roof at one time If I had known I would've requested all boys

[mom4cem]

Sorry for what you have went through over the summer , but glad you are back on the forum.

I have two boys and a girl. She is a "hurricane" in herself. If I had 3 girls and they were all like here,,,boy I don't what I would do. She is not even in the teenage yrs yet but she is already showing signs of the "pre-tweener" syndrome.

My oldest boy pretty calm, the youngest guy, well at 4 he is a handful but he is picking up many of the habits and mannerisms as my daughter(who decided to take him under her wing Oh yeah, I will be paying for that sooner or later!!!

Hope to see you around

[persephone]

There you are- I missed you!

[briarrose]

Mom4Cem, you gave me a good laugh this morning "pre-tweener syndrome." I think my oldest daughter started when she was about 9 and who would've ever guessed a sweet girl like her could be gotten by that horrible tweener bug, boy was I in for a rude awakening.

Persephone - Good to see you again, I've missed all of my POTS family I'm sorry about your ordeals lately.

Doctor's stories get me going the most as their own ignorance and sometimes incompetence drives me crazy (NO not literally! ) The non-believers need to be educated and if they can't be educated they need to be written off as idiot beyond help. I make up medical information binders for all the new docs I see because I know they don't have a clue where I live about POTS or Dysautonomia. The jump start on medical information usually helps inform them or reveal their lack of learning something new.

Sometimes depending on what kind of new doc I'm seeing I'll carry a copy of my medical records and the most important diagnostic tests I've had proving that I have POTS and severe hypotension.

Hang in there

[Eillyre]

Hi there Steph! Missed you!

Sorry to hear all of the trouble you've been going through. Take care of yourself.

Sending you a happy autumn mug of hot cider and a big hug!

Angela

[Gena]

Hi Steph, haven't heard from you in a while. I know you've been going through a lot, so it was good to see your post. Don't try to take on too much though. We love to see your interesting research articles, but I'd much rather you take care of yourself and family first!

Thanks for reaching out to the new members and always finding intriguing information or answers to questions and problems. Hang in there and you know I'm always a phone call away if you need to commiserate!

Hope your back and other pains disappear quickly!

((Hugs))

Gena

[Guest Julia59]

Hey Steph,

I'm one person that knows your heart---and I know you would never mean any harm by any of your posts. I have met you in person when you came to Toledo to see Dr. Grubb----and I can see that you are a very sincere and kind hearted person.

MY goodness you do have a lot on your plate-----------raising 6 kids on you own is enough----I can't imagine trying to work on top of that----and managing POTs and your spinal problems.

Spinal problems can cause so much more to go wrong with your body. I hope the PT helps you feel better. A good physician that has good knowledge of the spine should be able to help you feel stable. I know you know that surgery should be the last resort---and I hope you never have to deal with that. I have had bad luck with one paticular neurologist while trying to get NON INVASIVE treatment for my spinal issues. He simply didn't take anything seriously-----so off to the CLEVELAND CLINIC I GO.

I hope your Docs are working well with you. I'm so sorry to hear that you herniated disks in your back. Where did you herniate the disks-------cervical--thoracic, lumbar? Depending on where it is---- it can aggrivate your POTS.

Do you know someone that can chip in a little and help you out with the house chores? do you have older kids that can help you? It sounds like you have some teenages that can help you? :0)

I often worry about those of you who have POTS and live on your own. You can consider yourself a successful warrior against this disease---as you often have no choice but to just operate at your very worst.

You deserve to be pampered----and loaded up with chocolates.

Hang in there-----I know you do the best you can.

I love the articles and medical research you post----you really contribute a lot-----thanks for being there for us-------Your a blessing.

Julie :0)

[Ernie]

Hi Steph,

It's nice to hear from you but I am sorry that it is under the circumstances that you feel guilty.

Most of us on the forum are sick (vs caregivers) and we can only do so much. We are not responsible for how other people feel or perceive a situation.

I did not know you had 6 children and single mom on top of it. I really admire you for handling your family and trying to help with the forum.

I was thinking of you lately and was hoping you were doing well. I hope that your health gets back to baseline soon.

I always enjoy reading your posts, and reading your articles. I don't always thank you but I know that you do a lot of work.

Love

[Poohbear]

Good to hear from you.

Hope you will be feeling much better soon; sounds like you are doing an awesome job under the circumstances!

[Sunfish]

steph -

it's good to "see" you.

i'm sorry that you've been having such a rough time & hope things start to make a turn for you soon.

i am SO impressed that you're raising 6 kids on your own...i had no idea & am totally amazed. i wish i could do more but i am cheering you on!

hang in there,

melissa

[morgan617]

Oh yea steph, use that old single mom of only six kids thing... I'd have snatched all my hair from my head by now. Sorry you're having a rough time. You are such a great person and I love chatting with you, so get well soon and come back....I have an endoscopy coming up in a week or so and my doc is pretty nice looking. I wonder what will happen to my vertebra.....hmmmm...although I stay awake for mine, so will know what happens at all times....yikes...you must be a fighter under sedation. I find myself to be much more reasonable when I'm awake and so does my doc...