Does the ever get better?

[danelle]

For those of you who know my story sorry to repeat myself. For those of you who don't, this is it in a nutshell. I have had POTS for 19 yrs now but just correctly diagnosed right at a year ago. I have had many problems with POTS over the yrs but have always bounced back(to some degree). Over the past year I have had a steady decline in my health. I very rarely have a tolerable day(maybe one every 2 months or so).

I can't help but wonder how much worse this thing gets. I know it can get worse but my goodness. I am literally able to do much of nothing. This is even hard for me to do(write this) that's why I haven't posted much in a while.

I don't like to be a complainer but I'll tell ya, this thing is getting to me. I had to quit my job in June. I applied for disability and am still waiting for my first response from them.

My main concern, other than my family and finances, is my health. I just keep declining. Nothing seems to be working. I am doing the hose, fluids, salt, resting, meds I can tolerate, etc. I am just getting scared. I don't know when I am going to get somewhat better or atleast get to a "stable" level and quit declining.

How far can this thing take you down? I'm beginning to feel like it may be like MS or something where you do continue to decline. This has been going on for atleast a year. I'm just really scared.

Any advice or info on whether this thing can continue on a downhill slide would be appreciated. I have missed talking with you guys more than I realized. I can't wait for the bracelets to come out.

Thanks and love to all

[JLB]

This is so fascinating - I haven't been posting for a while because I've been in the same frame of mind as you, Danelle. Had some really bad times in recent weeks, and I've found myself wondering, where will this go? How will it end up?

With me, the worst of it is my lead-like legs and my heart rhythm. What's your biggest challenge?

[funnyfrog]

Hi Danelle - Things will get better, if this POTS doesn't kill you, it will make you stronger and just think, there is not one case that I have ever heard of atleast of POTS killing anyone. I was diagnosed in 2002, spent 5 months in 3 different hospitals and in Kessler Rehab Center in NJ and then spent months in physical therapy and spent alot of time at home adjusting to my new life with POTS and what I could and couldn't do. It took me a long time to come to terms with being in my early-mid thirties, not having a career anymore and adjusting my whole life to be able to live, but you know what, what else was the choice? Things did get better eventually, sure I still have my problems with POTS, you can see my breathing difficulties forum post I put on last night, but you know what, we could have something alot worse than this. I have learned to concentrate on the positive in my life-I have a nice house,a loving husband,2 great cats,a great set of parents,wonderful & suppportive friends and I lived through 2002, the worst year of my life(was on IV feedings,had botox in my pyloris because of GI symptoms of POTS,and other gross things,yadayadayada). Keep your chin up - Maybe you should try to see Dr. Low at Mayo Clinic in Mn. or Dr. Robertson at Vanderbilt if your quality of life has gotten so bad that no one else can help you-These 2 are the top specialists from what I understand on this POTS issue and maybe you can get your life back on track by trying to get to see one of them. I wish you better health and good luck - Take one day at a time. Beth

[Merrill]

Oh, shoot, Danelle--I was hoping we hadn't heard much from you because you were feeling better and moving on and busy with other things! Ugh. You too, JLB. I'll say ugh with you both, and tell you that I'm sorry things are so hard right now. A quote from MLK Jr comes to mind: "only when it is dark enough, can you see the stars." The light will come because it will! (Another quote just came to mind from Baba Ram Dass (from the book Be Here Now): "The snake will shed its skin when the snake sheds its skin."

I can't help but think that your fear of a downward spiral--or of much worse medical scenarios--is contributing to feelings of decline and not healing. You don't say specifically what your symptoms are... but if you're truly afraid of MS, then please get an MRI of the brain and find out for sure. MS is no longer a diagnosis that leads to continual decline, by the way. My brother was diagnosed last year--and while he went through a number of very dark months, he is finally on Avonex and is doing fantastically well. His attitude is also terrific, which is key to recovery... and he is out of pain and back to a complete and full life. (My sister in law has it too, and the same is also true for her.) I write this because if, G-d forbid, you are diagnosed, you must have faith that you too will get appropriate care and that working with your doctors, you will find the best treatments available.

I also wonder, since you said you've had this for 19 years, what else has changed for you this year since your diagnosis. Are you facing other tough challenges and stresses? Can you work on ridding your life of those (and let your body relax as those other things melt away?)

I'm a lifer too (30 some odd years and counting)--and I KNOW I've had better and worse periods, mostly due to stress. But I think I've been better since my diagnosis b/c I can accept what's happening when things go haywire... (And yes, I do count my lucky stars every day, because I still am able to work and more.)

Sorry to go on so long... I guess I just felt like writing awhile... but hubby just came home with dinner and I'm starving. I just wanted you to know that I'll be thinking of you and wishing you better days ahead. Please hang in there!

Merrill

[danelle]

Thanks you guys My worst symptoms right now are extreme fatigue, weakness, tachy, crazy rythyms, waking up in the middle of the night tachy, SOB, etc,not able to eat solids, shortness of breath-ok, i'll stop there.

The only stressors that are "new" for me right now are the financial things and the feeling guilty about being helpless to my family in more ways than one. I know it isn't my fault but I still feel bad. And the not knowing when this thing will get a little better or atleast ease off just a little. I know my life will never be the same and I can accept that but I would atleast like to be able to walk in a store, go for a ride and visit or just walk outside a little. (it would be nice to take a shower without having to be babysat by my husband too)

But you all are right, I need to focus on the positive. It could be much worse, I have a great husband and two wonderful boys and I still have my home. I am very lucky. That makes me smile

about the MS thing, I was just making a comparison. I have been tested (MRI) and it was ruled out. But sometimes your so weak, you wonder if it is that or cancer or something-but I knwo it isn't. It's just that weak yucky feeling.

I have been to Dr Grubb in Ohio not sure if I am up to another trip just yet. Fact, I know i'm not but maybe soon(I live in NC)

Merrill, thanks for the quotes. They make a lot of sense. Guess I'm on one of those self pity rides right now.

Thanks to all of you for your wonderful support and sorry if I didn't answer something. I will reread this tomorrow and see what I missed-brain fog kicking in

You all are wonderful, I couldn't get through this thing without you all.

Many cyber hugs to all of you and have a good night.

[ethansmom]

Danelle,

I to am sorry to hear that you've been feeling so awful. This illness can really put us in the depths of despair at times, but I truly believe that there is a reason for all of this (no matter what our different beliefs may be, I always say this because it's so universal)- a purpose as to why we were chosen to endure these hardships.

Having POTS has definitely made me stronger, but I have to say during flare-ups and tough times it can be hard to beleive that you will eventually feel better. Sometimes those tough periods seem to last forever.

I hope you can find what works for you soon, and begin to come out of this. We are all here for you!!

[Merrill]

I just had to add ... because I had a tough dental day and needed a treat , I just ate the last two Dove dark chocolate "Promises" in the bag... There are little hokey sayings in the foil wrappers, and when the first one said, "Test your own limits and keep going," I knew I had to share at the end of this conversation thread. The second one said, "There's no excuse not to dream," which was also apt, I suppose--except for everyone on the board with insomnia!

G'nite, all.

[DancingLight]

danelle,

i don't think i have anything at all profound to say! and no awesome quotes like merrill....love those merrill...esp. the MLK one.

i can only say that like you and JLB i feel so frustrated right now after more than 6 years. often i feel like i am worse and not better. i don't know if i should share that or not, b/c it isn't "uplifting." but, i also want you to know that you are not alone in this. and i am so sorry you are struggling so much.

any moment of not feeling terrible for me is this huge gift that i try to hang on to b/c it doesn't happen much! i keep plugging along like you say...but i feel your pain that it is hard to enjoy things when you feel so awful.

i go to a spiritual counselor and today he was so interesting b/c he told me that it wsa okay to be mad and angry about being sick. sometimes i think we put so much pressure on ourselves to stay "up" and be brave...i know i do...always cracking jokes, smiling, pushing through every day, etc...but sometimes maybe we just need to let it out! be mad, be sad! i don't know. i just know it's hard, and i wanted you to know we're all with you hoping you have better days soon.

somehow, we will find our way out of the bad spirals. for some of us it takes longer than others, but in the end, i think we will have better days! that is what keeps me getting up every day...(although, i have to admit this rainy dreary weather along with feeling like crap, makes me want to stay in bed and curl up and nest!)

sorry i don't have more insight...i just felt like i wanted to let you know i'm thinking about you. man, i wish i could be harry potter and wave a magic wand and we could all feel better. (maybe i should be hermione though, she is a bit cleverer and seems to remember her spells better! )

okay, off to bed,

please keep us posted...even if you need to vent again! otherwise we will all be worrying...you know how we are! he-he! do you think worrying and pots go together?

later alligator!

emily

[MomtoGiuliana]

Danelle

I am not at all surprised that it may take awhile for you to recover to a functional level if you have weathered this condition for 19 years with no diagnosis and treatment. While each of us responds differently to this condition, I think one thing that seems pretty typical is that it waxes and wanes, often with no recognizable triggers. I think you have every reason to believe that it WILL improve for you over time.

I also went on disability -- for nearly a year. Now I am working part-time. Some days are still pretty hard, but I have good days too.

Don't be hard on yourself. Believe your body will heal in its own time.

Merrell's quote selections are great--often living in the moment is all we can do--this is very hard--but sometimes it is ALL we have control over.

Katherine

[yogini]

Danelle,

I just wanted to say hang in there. You are having a bad spell, and things will get better. And just remember that your health is totally beyond your control, so it's not your fault. It's great that your family is so supportive.

Some of these doctors appts take several months to get, so maybe you can make an appointment in the future so that you have something to look forward to? You can always cancel or postpone if you can't make it. I don't know where you are in NC, but Vanderbilt U. in TN has a whole autonomic dysfunction center and may be closer to you than Ohio...

I hope you start to feel better soon!

-Rita

[StaceyYount]

Hey,

I soooo know how you feel. In 1997 when I was finally diagnosed I was down to 100 lbs and eventually went down to 86. I was on TPN and it was awful. But slowly with the TPN I got a little stronger than I was able to eat a bit and then a bit more and now though I don't eat a lot I can eat enough. So I came out of the worst. I am still homebound and still have terrible days everyday but I did get out of the low point and as someone else says this thing waxes and wanes. Just wanted you to know that all though I am still homebound and mostly bed bound with a wheel chair when I go out I did recover some and am hopeful that I will at least get some more mobility. Keep strong and remember above all else their are others who understand. I think that helps me more on my dark days than anything.Hope what I said helped. I send you a hug and a smile!

Stacey :-)

[Guest tearose]

danelle, how are you doing today? When I'm in a potshole it is hard to write so I'll just assume you are out there and reading and too wiped to post. I too wish I could tell you someday you'll have this all behind you and never have to struggle again. However, being a seasoned pots person, the best I can tell you is that one day soon, maybe even tomorrow you will begin to feel a bit stronger. Then you'll find a couple of days will have past and you were able to manage a task you couldn't do the week before. Slowly, if you allow yourself to rest and replenish, you will find you are getting stronger.

When I have trouble eating I graze more. Three spoonfuls of cream of rice cereal, two sips of tea, a bit of applesauce , or whatever appeals...try to build your strength up by getting a few healthy snacks in.

When I get wierd heart symptoms I try to just ignore them since they are suppose to be nothing that indicate any danger. When I can't sleep I get up and do something and then go back to bed.

Please say hi when you climb out of the potshole so we know you are okay! warmly, tearose

[DancingLight]

tearose...

i am already enjoying getting to know you through your posts! i know you were a seasoned veteran...but were away as i was getting into the site...so, i am glad that you are back!

i LOVE your term "potshole"...all one word. it is perfect. "i am in a potshole right now"...love it!

danelle...i'm in this potshole with you!

emily

[Radha]

sorry to hear you are having such a rough time danielle, everyday is bad for me, coz i have many different problems and symptoms, thank God for my parents who are so understanding and supportive, i hope you have some good support to lean on, stacey u mentioned TPN, what is that? i have a major problem eating too, all we can do is take it one day at a time, or even hour at a time!

radha

[ramakentesh]

Its rough - ive had minor pots symptoms for a long while - but it didnt get fullblown until last year - suddenly came on -and it took me about 10 months to get diagnosed properly - and even then it was tentative at first and i was always improving no thanks to the medical establishment.

I did improve quite well - by having a big salty breakfast every morning and then taking it easy in the mornings - no long standing or walking.

I try to move more strenous activities until the evening or late afternoon.

It is a slow process but it seems to wax and wane.

[Sue]

Hi Danelle,

I too was hoping not seeing you posting meant you were having a "good spell"

am so sorry to hear that you are not.

I can only tell you from my own experience, which has been basically almost this whole year. All you can really do is focus on yourself. It sounds like you have a great family and support system so give yourself time to heal. Getting stressed does nothing but makes our systems worse. I now take everyday, one day at a time. I decide what I am going to do that day and never before!!! My family and friends have all been great now that they understand what is going on with this illness. Not that they totally understand but they now have seen me at my worse and can't believe how helpless we can be. I no longer stress on having the "perfectly cleaned house" I am a neat FREAK!!! If a room is dirty, I shut the door.

Another thing I really cringed at was letting my friends and family help out. I now not only let them help when they offer but call them on bad days to ask for favors. FRIENDS really mean it when they offer themselves to help out... I have just always been a giver not a taker. Hmmm time to change.

Your in prayers, hope better days are coming

((((((((((((((((((((Danelle)))))))))))))))))

Sue