I'm Feeling Hopeless

[squirmingitch]

I have no idea how I missed the original post but when I read it tonight I was worried too. Bubba'sMom gives such great advice...it's funny, for some reason I assume everyone on here who gives great advice must be all cured and feeling well, so I was really sad to read about all that's been going on. It wasn't very long ago that I was so weak I had to choose which counter in my kitchen I would wipe that day -and I was only able to do that two days a week. I know what it feels like to see your life fading away and have no one figuring out why, despite your best efforts to get help. They really do such a comprehensive job at Mayo so hopefully they will figure out what's going wrong here.

PS. I love your screen name Squirmingitch!

LOL! My screen name was exactly how I had felt for quite some time! I can laugh now but I do NOT forget.

I too know the feeling of seeing your life fading away & no one figuring out why. It was 18 yrs. ago when I was told at the Dr. office to go home & take major quantities of vitamin C along with decongestants to stop the bleeding I was experiencing. Short story --- uterine fibroid --- hysterectomy.

[Bubba's Mom]

Did you go with a hotel recommendation from them? I ask bc my mom and I stayed in one that was super close - and connected to an underground tunnel system that takes you up into Mayo. It's...kinda cool . So you just go back to your room between tests to rest if you so choose, or there's a small shopping concourse on a lower level where you can kill some time. I got a great sweater there actually .

There's a Mayo store in the main level where I rented a scooter; I think it was $25/day but who knows if my brain is remembering that accurately. It was also 2006 so the price could have changed.

When you arrive at some point they will give you a schedule of the tests they will be doing, when and where in the building, and they will add tests if they see fit.

For the airport I recommend if you are weak that you ask your airline for a wheelchair. They will give you one and someone will even push you through the airport to and from your gate (and, you get to jump security lines and get on the plane first.)

My husband travels for his job almost every week. Many times he goes out of the country. He has accumulated a LOT of hotel bonus points and the same for airlines. He looked into where the hotels were that we could use the points. He opted for the one that's about 8 blocks from Mayo, because of the kitchenette.

I react to even trace amounts of gluten, so eating in restaurants is kind of scary. He thought it best to eat whatever we can prepare ourselves, not knowing if there would be gluten free restaurants?

When he was booking our flights he asked me if I thought I'd need a wheelchair and I told him yes. At this point I've gotten so weak I can't run errands on my own. I've gone to the produce store, and grocery store with my hubby, and walking with a cart to steady me exhausts me pretty fast.

I'm SO thankful that you've been there and can share a bit of what's to be expected. I'm a pretty anxious person in general, and having so many unknowns is scary!

[Bubba's Mom]

I have no idea how I missed the original post but when I read it tonight I was worried too. Bubba'sMom gives such great advice...it's funny, for some reason I assume everyone on here who gives great advice must be all cured and feeling well, so I was really sad to read about all that's been going on. It wasn't very long ago that I was so weak I had to choose which counter in my kitchen I would wipe that day -and I was only able to do that two days a week. I know what it feels like to see your life fading away and have no one figuring out why, despite your best efforts to get help. They really do such a comprehensive job at Mayo so hopefully they will figure out what's going wrong here.

PS. I love your screen name Squirmingitch!

It sounds like you are gaining back a bit of strength? With neuro stuff it takes longer to heal. I was in an auto accident years ago and blew out all of the disks in my neck. I had to have some removed and a plate put in. Because of the discs pressing on my spinal cord I had a lot of nerve damage in my hands. Long after my incision healed and with physical therapy, I slowly got back more feeling, but it took almost 2 years!

When I was DXed at the end of June, I was told "you have Celiac. Don't eat gluten. Look it up on the internet." Desperate to feel better, I read everything I could find. Even now, I continue to read books and whatever I can find to sort out the best path to healing. I'm happy to share what I've learned. Most of us have been pretty sick by the time we are DXed. The Dx is a bit of a shock and many of us go into overwhelm?

Like you, I picture those that have been here a while and giving advice, as perfectly healthy? I think for many of us it takes a while to sort things out, and to heal? Those that have been where we are now, have the best advice we can get? Some are still in the healing process themselves, and I think it's wonderful that we have a place to share what we've learned, and to ask questions. They help sort out what's been proven to work, versus the web sites stating falsehoods as fact, trying to sell us a worthless "cure"?

I think most of us, when first DXed are led to believe that if we just give up gluten our health will be immediately returned and all will be fine? When that doesn't happen overnight we start to worry? I'm SO thankful for those that keep coming back here to walk us through some of this stuff, especially when they remind us that it took years to get the damage we have, it will take time to heal all of that.

They have walked in our shoes and have so much useful advice. Most Dr.s don't seem to have a clue?!

[Bubba's Mom]

LOL! My screen name was exactly how I had felt for quite some time! I can laugh now but I do NOT forget.

I too know the feeling of seeing your life fading away & no one figuring out why. It was 18 yrs. ago when I was told at the Dr. office to go home & take major quantities of vitamin C along with decongestants to stop the bleeding I was experiencing. Short story --- uterine fibroid --- hysterectomy.

It's scary how mis-informed Dr.s can be? They state with authority what we have, and what the treatment should be, when in reality they don't know?

I had a hysterectomy too, at the age of 33. Now I wonder if it was necessary?

[squirmingitch]

Bubba'sMom, Well, I sure know mine was! No doubt about it. Mine was at 37. I had been to 6 OB/GYN's in 4 years & none of them paid the least attention to my symptoms. I knew something was wrong but they acted deaf. You know how the questionnaire asks if you've had any changes in amt. of blood? Yes. Changes in duration? Yes. Plus several other changes along with some thing which weren't covered in the paperwork but I described to them.

Sooooo, I ended up in the ER getting 2 pints of blood & being sent home for a month to recover my strength enough to go through the surgery. WHICH had to be the one with the "old fashioned" smiley scar because the fibroid was SO big (2 ilbs.) by that time that they couldn't remove it through the vagina as they had been doing for some years.

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

So. Tell us how you are feeling. Are you feeling like you're getting any nourishment? Are you getting weaker? I hope you aren't. Boy, I sure wish they would move up that appt.

[Bubba's Mom]

I feel weak, but can still eat. I was told to eat at least 1800 calories a day. If I could do that...I wouldn't be going to Dr.s!

I'm making sure I eat a bit of protein with each meal, and no junk food. I'm making sure I drink lots of water too.

I was just started on an anti-biotic. It causes nausea.

[squirmingitch]

Exactly what you needed right? Can you take anything for the nausea?

[Bubba's Mom]

I got an RX for Zofran. It helps some.

I'm not sure what I should be doing about Probiotics while taking antibiotics? I stopped taking them because I thought it's just adding more bacteria to be killed off..and the dying cells emit toxins? I thought I'd add them back once I'm done with the poison.

[Aly1]

My husband travels for his job almost every week. Many times he goes out of the country. He has accumulated a LOT of hotel bonus points and the same for airlines. He looked into where the hotels were that we could use the points. He opted for the one that's about 8 blocks from Mayo, because of the kitchenette.

I react to even trace amounts of gluten, so eating in restaurants is kind of scary. He thought it best to eat whatever we can prepare ourselves, not knowing if there would be gluten free restaurants?

When he was booking our flights he asked me if I thought I'd need a wheelchair and I told him yes. At this point I've gotten so weak I can't run errands on my own. I've gone to the produce store, and grocery store with my hubby, and walking with a cart to steady me exhausts me pretty fast.

I'm SO thankful that you've been there and can share a bit of what's to be expected. I'm a pretty anxious person in general, and having so many unknowns is scary!

I was not gluten free back then so I don't know how the food options would be celiac-wise. If I recall correctly there was quite a bit of fast food on that lower concourse and unless things have changed you should definitely plan to eat in your kitchenette!

That was thoughtful of your hubby to realize you might need a wheelchair in the airport. I remember feeling a bit awkward the first time I did that but they do it many many times a day and don't think twice about it. I also remember being where you're at, not having the ability to run errands myself anymore and hubby having to do it all. It can be pretty depressing . Hopefully this is your rock-bottom and Mayo will put you on the course to healing.

Do be prepared to advocate for yourself and make sure you're heard. I had to take a deep breath and assert myself (I have social anxiety so that can be hard for me) ...when there are three docs in a room it's 3 times the opportunity for them to think they know it all! But you have to do it from the get-go, that's important, because the info they take away from your consultation with them will direct all of your tests for the week. It's not like a usual doc where you'll have lots of follow up visits and opportunities to make up any missed tests. If you can manage it, I'd recommend creating a document where you write down what exactly you want them to "get" - what they absolutley MUST understand about your symptoms in order to help you. If you add lots of back story, you might lose them - in my experience they were not hand-holders, they were clinicians looking at data. I know you have anxiety issues too, but try to use your desperation to get you past that, so you can get the best that Mayo has to offer.

My context: One of the hallmarks of my illness was that any activity made my leg muscles worse - anything where the muscles had to contract regularly made me so much worse, no matter how innocuous the activity might have seemed, and caused the symptoms to spread further up my legs. Understanding that was pivotal. At the end of the week they recommended, amongst other things, physical therapy. They never really heard at the beginning of the week that I'd had 3 runs at PT and each one had made me worse. That last day was the day I finally asserted myself, but it was too late - when you get to the end, it's case closed, they make their recommendations and it's over, they're never going to see you again. Its very formulaic what they do there - consult, tons of tests, more tests if results indicate further exploration in one direction, and by the end of the week they tie it all up in a bow and present their findings and recommendations or dx. At that last meeting they are no longer listening, they are just talking! So if I could have a do-over I would write down what I consider to be the hallmarks of my illness - pared down as much as possible so as not to overwhelm - and make sure I openly discussed the list at the beginning consultation. Make 2 copies do you can keep one and hand over the other one (though that may not be necessary. You carry your own medical file all over if I recall correctly (wish my memory was better!) but bring the extra copy just in case. That way you can be sure it's not lost in the shuffle and can refer to it to keep yourself focused during all that external stimulation. Doing that probably would not have helped me anyway, since my illness appears to be a combination of GI and the fact that I'm stuck in a mold-infested apartment. But it's what I would do if I were your shoes now.

Hope that info helps. If you have any more questions I'd be happy to answer them!

[Bubba's Mom]

Soo...We made all of our travel arrangements and booked the hotel for Rochester. We were happy to get a hotel with a kitchenette. It sounded like a nice complex there too? I was feeling even more comfortable about the trip after knowing how it went for Aly there, with easy access to so many things.

In today's mail I got a pre-registration packet from Mayo. The cover page has the times /places I'm scheduled to be on the first day. As I was filling it out I noticed that it says at the bottom of the page it's in Jacksonville FLORIDA! The enclosed brochures are about Florida. Apparently, the girl from my Dr.s office faxxed my records there instead of Rochester? She was supposed to send them to Rochester! I was told I was being referred to Rochester. Since they called me to set up the appointment I didn't question the location. Just one more way my incompetent Dr. and his assistant have screwed me over...again! When my Dr. finds out I didn't go where he said to, he'll get pis*** off like he did when I went to the hospital for what felt like life threatening symptoms.

Nobody answers at the contact phone numbers I have to double check where I'm supposed to be because it's the weekend.

I'm in panic mode again! I just couldn't help bawling over this..and I get to stew until Monday to confirm anything.

I don't know if the "A team" Dr.s are in Rochester? That's where I was told to go.

[squirmingitch]

Nothing like high anxiety to get the old ticker racing eh? STRESS to the MAX!

Okay, let's think here. I would say that because the bottom says Jacksonville, Fl. then it's Jacksonville, Fl. Now, based on that here is what I would do. I know you don't WANT to do it but when life gives you lemons......

I would start right NOW making arrangements for Jax. Jax is Jacksonville. I'm a Floridian. Make all the same type arrangements as you did for Rochester. DO NOT cancel anything for Jacksonville! Have your hubby do just like he did before. By doing this you can be ready for either place. When you find out on Monday then you can cancel the wrong one. On Monday you can make the call & see. I would be willing to bet it's Jax. But you can ask them if you can get in at Rochester ---- ask CAREFULLY --- you don't want them cancelling you out of Jax. by mistake. OR you could call Rochester & tell them what happened & see if they can get you in there. I hate to say this but it's probably too late. It's a mess & you have to go with the flow. Hey, you could use the warm weather right? Nice sunshine & some salt air to breathe?

Who told you the "A" team Dr.'s were in Rochester? You say that's where you were told to go. Was that Dr. No Bedside Manner? If so, then what the heck does he know? He's a jerk of the 1st order. I don't know that one Mayo is better than another. Maybe someone else can answer that. I just assumed Rochester is the closest one to you & that's why that one was chosen.

And BTW, I darn sure would call that jerk's office Monday & let it rip! You are worrying about the Dr. getting mad at you for their screw up? Puh leese! I would give that "B" such a piece of my mind that his ears would burn for an entire week! Don't you let that so & so be nasty to you. YOU growl at him & YOU growl FIRST. And do it loud.

[Aly1]

Oh and here I thought you were going to MN, that's the one I went to. I cant believe you booked flights and everything and now find you are expected somewhere else! At least you found out now, it would really be a nightmare if you showed up in the wrong state! And no worries, I'm sure they do the same thing regardless of where you go.

You and I just posted 10 min apart, not sure if you saw my previous post? In any case, try not to get anxious, just focus on the big picture instead of all those anxiety-producing thoughts. It's a great opportunity for you to find out what's wrong once and for all!

[Bubba's Mom]

I looked up the Dr. I'm scheduled to see. She's female..and in Florida.

The phyician's assistant that was supposed to do the referral and get my records faxxed, etc. totally screwed up. I DO need to check to see just WHERE she sent my records! She said she sent 26 pages. There is supposed to be the referral and a cover letter from the Dr., along with test results. The info packet says I am to hand deliver these if they aren't sent by the Dr.

Calling the office is always an exercise in phone tag. It's very hard to talk to an actual person rather than a voice mail. No way I'd get to talk to the Dr. He has lots of "hurdles" in the way to protect him from dealing with mere mortals.

I have no doubts that if I insist on Rochester I'll have a much longer wait, which I can't do. I'm going to roll with it.

There aren't anywhere near as many amenities around the Florida center. I couldn't find any info online that tells if one Mayo location is better at certain illnesses than others, so maybe the Rochester recommendation was because it's closer? I'm hoping that's the case.

We can't make duplicate travel arrangements because we're using points earned from other travel to pay for the trip. We don't have enough points for two trips.

Aly, I really appreciate your input, having been through Mayo's process. When I went to the current GI I had my list so I could stay on topic and he didn't seem to like it? I already planned on doing that for Mayo too. I don't want to get nervous and forget anything.

[Aly1]

Oh I know, doctors hate it when you try to do anything remotely assertive but who cares. It's more important that they get all the info you need them to get. But I would weed out anything that isn't totally...pivotal. I think after the first few points most docs tend to glaze over and don't hear a word you're saying!

[mushroom]

Oh I know, doctors hate it when you try to do anything remotely assertive but who cares. It's more important that they get all the info you need them to get. But I would weed out anything that isn't totally...pivotal. I think after the first few points most docs tend to glaze over and don't hear a word you're saying!

I totally agree with Aly. Reminds me of the old TV show (which you are both too young to remember) Dragnet, where Sgt. Friday used to say, "Just the facts, ma'am, just the facts!" And just the most salient facts. You can elaborate if they are interested later, but there are certain things you have to get in. The biggest danger in one of these consultations (and this happened to me at Mayo in Arizona last year ) is their getting sidetracked on something that is mostly irrelevant and it skews the whole consultation.

[squirmingitch]

Hey mushroom -- I remember Dragnet! I think Sgt. Friday would break his face if he ever cracked a smile!

I wonder if Mayo ever does any further referrals? Say Bubba'sMom goes to Fl. & they check her out & decide she needs more stuff, more at a later date --- follow up stuff --- I wonder if they would refer her to Mayo Rochester since it's closer to her? Anyone know?

[Aly1]

I think they just refer you back to the doc who originally sent you to them...who would do any further referrals. But I am really not positive, that was just my experience but maybe it would have been different if I'd been given a new dx...

[Bubba's Mom]

So, it's confirmed my appointment is in Florida. I asked if they got the faxed medical records. They put me on hold for quite a while, then came back and said they didn't get any medical records..and they MUST have them! I was given the fax # and was told to have the Dr.s office send them to that #. I called and asked them to do it and they said, sure no problem.

I wonder where my records went the first time? I sure hope they get to the right place this time.

I had clothes set aside for cold weather travel. I don't know if I have any warm weather clothes that fit?

Hubby is changing our travel plans. Nothing like a good dose of stress to get the old heart beating?

[squirmingitch]

Can you get the Dr's office to make photocopies & give them to you or your hubby? OR get them to fax the records to you? If it were me I would MAKE SURE I had a hard copy of those records in MY hands when I walked into Mayo. That's the only way you can be assured they will get a copy --- if YOU hand them to them OR if YOU fax them to Mayo.

[mushroom]

I faxed my records myself - I don't trust anyone either. What?? Are we becoming paranoid???

[Bubba's Mom]

LOL..I'm one step ahead on that. I have copies of all of my test results since July, but not the Dr.s referral or cover letter.

I was told they wanted the records sent right away, because they want to look them over prior to the visit.

I was in the process of switching PCPs and had to pay for copies of my older medical records. I haven't delivered them yet, so I have those too.

[kareng]

LOL..I'm one step ahead on that. I have copies of all of my test results since July, but not the Dr.s referral or cover letter.

I was told they wanted the records sent right away, because they want to look them over prior to the visit.

I was in the process of switching PCPs and had to pay for copies of my older medical records. I haven't delivered them yet, so I have those too.

Make sure your have a copy to keep at home and another copy to take with you incase they don't have the records for some reason. ON the copy you take with you, you can organize them how ever you want. Highlight or tag a few important parts you want to make sure are addressed.

[Aly1]

So, it's confirmed my appointment is in Florida. I asked if they got the faxed medical records. They put me on hold for quite a while, then came back and said they didn't get any medical records..and they MUST have them! I was given the fax # and was told to have the Dr.s office send them to that #. I called and asked them to do it and they said, sure no problem.

I wonder where my records went the first time? I sure hope they get to the right place this time.

I had clothes set aside for cold weather travel. I don't know if I have any warm weather clothes that fit?

Hubby is changing our travel plans. Nothing like a good dose of stress to get the old heart beating?

What a pain! It's a good thing you asked if they got them!

[squirmingitch]

Hi BubbasMom, How are you doing? Count down has begun. What day do you leave?

I was just reading another thread & saw that you said you have problems with soy & found it even in your vitamins. I have problems with soy too. I also have problems with the iodine making my dh flare badly. So -- no gluten. soy, iodine. I searched & searched to find a multi vitamin. Finally found one --- it's Solgar "Vitamins Only" ~~~ no sugar, salt, starch, iodine, yeast, wheat, soy, gluten, dairy or artificial preservatives.

[Bubba's Mom]

Hi BubbasMom, How are you doing? Count down has begun. What day do you leave?

I was just reading another thread & saw that you said you have problems with soy & found it even in your vitamins. I have problems with soy too. I also have problems with the iodine making my dh flare badly. So -- no gluten. soy, iodine. I searched & searched to find a multi vitamin. Finally found one --- it's Solgar "Vitamins Only" ~~~ no sugar, salt, starch, iodine, yeast, wheat, soy, gluten, dairy or artificial preservatives.

I'm making my list of things to take..and checking it twice! I'm actually kind of shaky today, so I'm glad I'll be going soon. Since the weather will be warm there I had a hard time finding clothes that will fit. I've lost a lot of weight since we had warm weather here.

We leave for the airport early Sunday morning.

I'll look into those vitamins. It's hard to find any without soy as the source for vitamin E and sometimes they use it for D as well.