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BIG success today and BIG Disappointment


Roselover
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Today is the annual Rose Show in Portland. For 9 years now it has been a tradition for my kids and I to get up early and enter roses in the show. I didn't think I would make it today, but with the help of my daughters and my compression stockings I actually made it! AND I won a trophy!!! For seven stems of Old Garden Roses. I have lost so many things that I enjoy, it was such a pleasure to be able to do something "nomal" for once. I am paying for it now, but it was worth it!

But then, this afternoon I had a big disappointment. I can't find any doctors who understand my Dysautonomia, but one was willing to help me try to get into Mayo. I called today because it's been three weeks since we sent the info and I was told that yes it arrived and a letter has been sent to me saying that Dr. Low will not see me. They couldn't tell me why, but said the letter should give some indication of that.

With all the careful research, thought and prayer that went into this, it's disappointing, and now I wonder what I should do. I know many of you have good expereinces at Cleveland - but it's not covered by my insurance like Mayo is. Dr. Grubb sounds very hard to see, so I just don't know what to do.

Then my neurologist returned a call I put in about stomach problems I am having. She suspect delayed gastric emtying and says I should have some tests... barium swallow... possibly stomach tissue biopsy??? I just sigh and think, here we go again. More testing with doctors who don't know much about POTS. UGH!

But still, I am so thankful for my few hours out of the house today. My girls were so terrific in making it possible. I love roller coaster rides, but I think I'm ready to get off this one.

Thanks to all who read this and for your love and support. I need all of you.

~Roselover

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Hi Roselover,

first of all, CONGRATULATIONS, on your trophy!!! And on your terrific girls!!! And last but not least, on yourself because you enjoyed the roseshow so much. Knowing that you would have to pay for it.

I'm very sorry that Dr Low didn't take you. I don't know why ofcourse, but you can call again, and ask for what reason (that is if you feel strong enough to do that). I understand that it must be a terrible disappointment and I'm very sorry for you. But you know, I think if you would try Dr. Grubb, it would be worth waiting for it. I know for sure I would do that, if only I had the opportunity. THE POTS won't be cured in the time you wait for him and while waiting, you could make a list of everything you want to discuss with him. Do you think you can make the trip to see him= (I?m sorry, this should be a questionmark, but my keyboard is giving me trouble). Also there might be a money issue.

I?m very sorry your great day ended disappointing. I know the feeling and it?s lousy. Maybe the sun is shining today and you can sit in your garden (with your trophy :) ) and think it over.

Warm wishes,

Corina

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Congratulations on your trophy for the beautiful roses you grow!!!

I'm so happy for you that you are able to still enjoy something you love so much even though it takes more out of you now than in the past.

It's great that your girls were so understanding and helpful as well.

In regards to your being turned down by Mayo. I can only imagine your disappointment. I do know that Dr. Low is sometimes just completely bogged down. Personally, I didn't get much from him at all when I was there. Although he was nice I just wasn't given adequate time or a chance to ask any questions.

Did you and your Dr specifically request the appt to be with Dr. Low? If so, I would recommend requesting to see anyone there who deals with autonomic issues, not just Dr. Low. That might give you better chance of getting in.

I can relate to your frustration too about something new constantly coming up and having to always see Dr's and get tests etc. It does make you weary of it all sometimes. Our energy is so limited already as it is.

I hope you will get some answers and that both your body and your spirit will feel much better soon.

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Hi Roselover,

Congradulation on your trophy.

I would re-apply at Mayo but to see another ANS specialist. I think Dr Fealy and another well are well liked. As Corina mentioned also, you could get an appoitment with Dr Grubb.

Take care

Ernie

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Roselover - I am so happy you were able to get to your annual rose show...congratulations!

As far as getting in to see Dr's... the only way I got into any of my appts was to be consistently persistent....we called Mayo everyday and spoke to a pateint advocate to get me in...

I would of never got in otherwise b/c I found out afterwards that theydid not even have my last name spelled correctly in their computer!

To get into Low we sat in the neuro office for 5 hours , b/c at first I had 0 neuro appts/

to get this new appt with Low, I once again called this week and went through advocates b/c had I not I would not be able to see anyone in Neuro until August at the soonest.

as far as Grubb...give the office a call..tell them how ill you are .... I think there is a chance you can get an appt. It might be a wait, but very worth it.

The squeaky wheel really does get the grease in these cases.... so dont give up hope..if a door shuts reopen it... I know you will get into the right Dr for you ...

Enjoy the rest of the day...I'm so happy you were able to have such a wonderful day with your kids :)

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Melanie

Congratulations on your trophy!

You know all of the years I've lived here in Portland I've never been to that show. My family hosts the Naval fleet so that keeps us very busy. The past few years I've had to exclude myself from those activities because I don't have the energy or endurance, so my kids have picked up my slack.

I'm sorry to hear about the Mayo as I know that you were really counting on that visit to get you going in the right direction. There is a doctor here in Portland that did her internship with Dr. Grubb, I will try to Finish this note by sending you another email.

Take care

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Guest Julia59

Roselover,

I'm sorry about the mayo clinic----I know how much you wanted to get some answers and possible relief.

As far as I know Dr. Grubb is seeing new patients. I talked with his secretary last week---or maybe two weeks ago-----to ask her if I could bring in my extra magazines to keep the patients from getting board while waiting to see Dr. Grubb. I live a few blocks away from his office at The Medical University of Ohio.

I have tons of magazines ordered from nieces, nephews ect.

Congratulations on your trophy! I love roses, and I wish I had the patience to be a better gardener. One of these days I have to get beyond those annuals I plant every summer. Any Idea's ? :( We have clay soil----ugggg

You will be in my prayers to find the help you need.

Julie :0)

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Congratulations Roselover! What a wonderful achievement. Give yourself a pat on the back.

As far as Mayo, all I got was a form letter, so don't be surprised to get one. No explanations, no anything. So if you are waiting for one, I'd advise you not to hold your breath. I was turned down by both Dr. Fealy and DR. Low. It was pretty devastating at the time, but now after reading all the posts I have, I'm glad I didn't go as it sounds like it would have been a waste of money for me anyway. .

I don't expect I will ever know exactly what is wrong with me and at this point I really don't care. Whatever will happen, will happen. I can't take any of the usual meds because of other problems, so I just live with the symptoms I have. And after awhile, I think I've adapted as well as can be expected. My life has changed drastically, no doubt about that, But I have just learned to take one day at a time now and have stopped stressing over exactly what's wrong, or what new test I can have, or what have you done for me lately, from doctors. I find it gives me more peace to just chill about the stuff I can't change and be okay with the things that are.

I know many people do not feel this way, especially the really young ones, but I have so little energy, I'm not going to spend it fretting over things that are just wrong, because there's nothing you can do about it. This is my case only, and trust me, I was soo devastated to get that rejection letter. But I am so past all that stuff and can be more to family now than when I was feverishly trying to find all the answers that weren't there. It just is. Sometimes there are no answers.

I'm sure as a pastor's wife, you've been asked why a million times. But sometimes the answers are just not there. I still scream it sometimes, but I have no illusions that some epiphany is going to slap me in the face and I will have the answers. So if I had roses that won prizes, I would go into my garden and smell them and love the beauty of them and wonder how something can be so beautiful and intricate and perfect. This is a bumpy ride, but I've realized it could be worse. Somedays I'm not sure how, but in the deepest part of me I still know it. I may be blasted by some for this attitude because the more we find out the more we know, but for some of us, these things are more elusive than to others. We could ask why about that too. So it could just be a big circle of whys with no answers and only frustration. Hang in there and smell those roses. morgan

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Thank you all for you kind words.

Yesterday I picked up my first wheelchair. It's a lightweight one that folds to put in the car and the legs rests lift so I can have my feet up. Then my husband took me to the mall to pick up my trophy and see the roses. He pushed me around the show and the trophy I recieved was a beatiful pair of antique looking silver candlesticks.

I've thought a lot about what all of you have said to me. Especially you Morgan. I really appreciate all of your input. I guess I have held on to the hope that if I could find the cause of my POTS, I could find some ways to treat it. It's hard for me to let go of this when there are possible causes that have not been ruled out. And I am a person who wants to know how and why things are happening.

But we can't always know can we? Buying the wheelchair was like admitting that I just have to live this way. I think it was even harder on my husband than on me. And yet, I was so worn out, I couldn't have seen the roses and picked up my trophy without it.

The big question - the thing that tears me up - is when do I give up the search for things that might give me more life and function to just live the life I have been given?

Morgan, I don't think people ask me so much "why" as they just seem to expect that God will heal me. I feel like I disappoint people if I give up searching for answers. And yet, I don't believe that healing is God's only answer for me. Your words really encouraged me in my thinking and in loving the life that God has given me. Even if it means going to the rose show in a wheelchair!

I'm still considering what I should do. I am leaning toward calling Dr. Grubb. Instead of looking for all the answers, just hoping that he will give guidance into living my life to the fullest.

Thank you all for being here and sharing the ups and downs of the POTS Pioneer life.

~Roselover

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Hi Roselover,

I understand how you feel about buying your first wheelchair. I postponed the purchase of mine for exactly the same reason. My husband had been telling me for 2 years to get an electric wheelchair and I just did not want. So I was homebound for 4 years.

Then after reading Corina's posts and seeing how she is enjoying her life having an electric cart I decided that I could still do something with my life. So I made some phone calls to my insurance company and found out that they might accept depending on my situation. So my doctor wrote a letter and the insurance company accepted to pay.

I got my wheelchair 3 weeks ago yesterday and I have so much fun with it. I take daily 2-3 hours drive with my dog on my lap. I like talking to people and watching the river. It's like I am having a purpuse in life again. I never thought that a wheelchair would change my life (for the positive) but it does.

After I started the paper work for the wheelchair and it was being built I was wondering if I had made the right decision. Then I said to myself that if ever doctors find a miracle pill and I don't need it anymore then I will put it in the garage and go back to my normal life. But for the time being I need it and will use it.

The funny thing is that I don't feel disabled when I am sitting in it. I ride on the bicycle path and people stare at me at first. So I look at them and most of them smile or say hello. Some people even start to talk. I consider myself a normal person who is sitting to get around. Very few people ask me why I am in a wheelchair. We just talk about my dog and the temperature.

If your form of POTS is genetic like mine then there is a high probability that you will have to learn to live with it. If it is not genetic then I can't really tell you what to do because this is not my case so I don't have much knowledge about that path.

Ernie

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Roselover,

I know how you must have felt when you decided to go sit in your wheelchair. I felt so ashamed at first (I know I didn't need to feel ashamed, but I just did), it felt as if I lost the battle against my body. Everytime I have to take these kind of decisions I hate it and it takes me time to get over it. BUT: I sooo enjoy to be part of the world again, when driving my electric cart, I enjoy to go up stairs with my elevator and get things myself, instead of asking my children again (and again and again, you know what I mean?). My world is still very small but I WANT to enjoy it!

And you are right: we can't always know, no matter how much we want that. And I will ALLWAYS keep on searching for answers, but at some times I need to rest from searching and take the time to enjoy what I have: my husband, my greatest kids of the world, the sunshine, my friends on POTSplace, my life (although it's a complete different life from what I had).

I think you're on the right track Roselover, I really hope you can enjoy your wheelchair (in time). I know it's difficult for your husband as well (as for your girls) but they'll get over it (talking about it really helps) and you will be able to go out with your family and have a nice time!!

Take care,

Corina

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Thank you so much Ernie. You were actually my inspiration to "bite the bullet" and get a wheelchair so I wouldn't have to miss out so much. Your excitement and enjoyment of getting out that first week you got yours made me feel like I was selling myself short. Thank you.

I don't know if my POTS is genetic or not, but I have a very strong suspicion that it is. When my mom was about 40, she came down with mysterious symptoms of tiredness, dizziness, muscle weakness, numbness and tingling and heart racing. She went the direction of MS, but has finally admitted to me that even with all of the MRI's she's had, MS was never found. The Neurologist told her that there was nothing more he could do and he didn't need to see her anymore. She's clung to her MS diagnosis because she doesn't have anything else. On top of that, my sister is now have strange symptoms and doctors can't find what is wrong. She has pain in her stomach, but also BP that spikes, and tachycardia at strange times. I am begining to think we have something hereditary going on.

Thank you for your encourgement Ernie!

~Roselover

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hi

evening here now, and a little brainfogged,

Congratulations on rose competition. As much as it's satisfying seeing something you've nurtured win a trophy, I think the bigger trophy is that your kids got it together to help you accomplish something meaningful to you. The children you nurture are winners!

Also standing before a series of tests, probably another emg and a muscle biopsy. I take "vacations" from doing the medical rounds and tests every so often, it preserves my sanity. I totally understand your trepidation.

My husband is picking me up a wheelchair on Tuesday. Thinking about how to decorate it. I borrowed one a couple of years ago. Was very self-conscious at first, got used to it.

Also think my mom (and grandmother) and sister suffer/ed from POTS. Sister has same issues as your sister, but I think that seeing what I'm going through makes it too scary to think this may also be her problem.

Sending love,

Ariella

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forgot to address one more thing...

in terms of acceptance-vs-finding cure, i kind of look at it like a balancing act. On one hand accept the situation as-is, on the other hand acknowlege that things can change for the better when the time is right, and go through the motions of whatever medical stuff I need to do. But like I wrote in the previous post, if a test is not immediately urgent, I take "mental health breaks" of a few weeks from the testing until I can handle being poked and prodded again.

:) Ariella

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Corina, you too have been an inspiration to me. I hadn't been reading the forum long when you wrote about driving your electric cart down to the garden center. I will always picture you driving home with your basket overloaded with flowers!!! BTW have you and Em talked about the idom "bite the bullet" yet?

Ariella, I agree about taking mental health breaks. I use my painting for this. It gets my mind of myself and my decisions. My biggest problem is that I have hardly been able to get any testing done connected with my POTS - only TTT. Everything else I have had was done incorrectly or was inconclusive. I guess that leaves me wondering about all the possibilities. I haven't even had adrenal function tested or adrenal tumors ruled out. Ask Briarrose... it's really hard to find docs here to do this in the Northwest.

Oh.... but I can't tell you all how helpful this forum is and how glad I am to have found you. But I guess I don't need to tell you... you know don't you. :)

Sending rose bouquets to you all,

Love Roselover

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Roselover,

I am very late to chime in here...so sorry. I am just starting to learn 'your story' and I am sure I am going to take a while to catch up. I have not been able to keep up with all of the 'newbies' as much as I used to and am just now trying to do that more...sorry!

I wanted to congratulate you on your roses! And your success there...

I am sorry the day ended with a downer...

I don't know how to find the balance between seeking answers and 'surrendering to what is'...but, I do know that I think medicine is always changing and different doctors have different perspectives. I have 'taken breaks' from pursuing new answers in order to regenerate steam to try new things or see new doctors. The disappointments, like the one you just had, take a lot out of me.

I struggle with the God stuff, but I also feel that God is not 'punishing me' for something I did wrong. I find God not in my suffering, but in the love that has come because of it...this site being one of those places.

I have been ill for almost 7 years, almost all of my twenties and mostly homebound. These past few months post-surgyer have been the hardest. But, I, too, have to hold on to hope...it may not be a picture of health, and healing comes in many forms, as you know. One of my favorite Jewish books was about finding spiritual wholeness, despite not having physical health.

I think that you just did something that is a great example of holding on to your spirit in this illness. You went out in a wheelchair and showed off your roses and picked up your trophy. I haven't had the courage to do the cart/wheelchair thing and corina, you and ernie really inspire me.

I am seriously rambling here...sorry. It's just that I don't think I've really ever welcomed you here and I want to chip in a little and say hi and let you know I am reading and following your story to the best that I can! :)

I look at my 'healing' as my full-time job, but we need breaks...like your painting, etc. It is very hard for me to take time away and do those things, but I rely a lot on my books on tape and knitting for a break! And cuddling with my dog!

I see you are online tonight too! Just wanted to say hi, and rambled on here! oops!

Later alligator!

Oh, no, i haven't taught Corina bite the bullet...I need some new idioms for her! :angry:

Emily

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Thank you Emily! I love reading your posts - you so often make me smile! And your warm thoughts are very welcome right now!

I'm curious - what do you knit? I've done a few sweaters, but I have a hard time finding good patterns that really turn out the size they say - even when my gauge is right. Do you have any suggestions on patterns?

Hope you can sleep again tonight. Glad you got a few last night.

~Roselover

BTW: I have a little furry friend too. His name is Taran. Actually, he's my sons dog, but he's my lap dog. He's a malt-poo and he turned 1 in March. He was born one day before my B-day!

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