An update on Nicole

[Nicole's Mom]

Hi. I"m sorry that I have not been here for a while to write about Nicole. I wanted to but I think I've been too tired and too immobilized to write. Nicole is still in rough shape. It's been up and down. The only thing she has going for her now is that late at night she has a window of time where she can read or write. It's a very short period of time - like and hour or so but I'm hoping it's a sign. But she still cannot ambulate except for bathroom trips and her brain is like clay except for that window of time late at night. Plus the slightest exertion still sets her back. She has never been this way- where the exertion/set-back thing was such a factor.

We had the phone consult with her POTS doc back a couple or so weeks ago and he is not going to offer anything at the present time. Nicole asked him about a lot of things. One thing is that he said he does not use beta blockers. As you know she had the Toprol in her possession and had begun taking it and then stopped when her period came and brought worse symptoms. This was before the phone consult. She has not started taking it again.

Her local doctor went to her apartment to pay her a house call. He wrote a prescription for Wellbutrin and for Seasonale. He did not push her to take the Toprol. Then Nicole had a phone consult with a mid-wife who suggested taking the pill she was already on (which is 20% estrogen) continuously without the placebo week even though she has break through bleeding. Meanwhile the local doctor suggested another doctor who he thought was smart and we called that new doctor and he came by our house today. (We brought Nicole home to our house on Saturday to live with us).

The doctor who came by today is an N.D. and and M.D. He has no experience in treating POTS but seemed to know about it to some degree. He spent and hour and a half here. He asked a lot of questions and Nicole said he was a very good listener and he took lots of notes. He said he would read through Nicole's thick medical records. I also gave him some literature to read. His plan is to do some bloodwork to recheck Nicole's immune function, endochrine, norepi levels, cortisol and a few other things. He is setting it up to have Quest Lab come here. He doesn't like Nicole taking synthetic hormomes (i.e.- the Pill) for her PCOS and wants to give her some natural hormones. For now she will take the pill until he does the endochrine testing. He seems to be a creative thinker yet he knows how serious her condition is and how uncurable POTS is. He will TRY to help but he wants Nicole to keep connected to the POTS doc- the one I mentioned above. We told him about how the POTS is not going to help her at this time.

I called Mayo clinic the other day to inquire about the whole affair. If we were to bring Nicole there in the condition she is in presently she would have to be admitted. It would be scary to imagine her doing this presently as an outpatient. She cannot even get out of the house- nevermind traipsing around from motel to Mayo, etc. Also we would rather do air ambulance both ways and would have to work with insurance to cover it. Has anyone here ever used an air ambulance as opposed to the Angel Network jets? We used air ambulance once before and it was tough to get it covered. That required a lawyer after the fact. It was a total emergency to get Nicole from CA to RI and we took a huge loan against out house to pay for it. Anyway regarding Mayo there are many huge hoops to go through to be an admitted patient to Mayo nevermind the air ambulance factor. Has anyone here on the forum been admitted as opposed to an outpatient? They are booking for February but once in a while with the right letters from the right doctors I was told you can get in soon. But it's very rare to have this happen- I was told. I'm not quite sure what would qualify as the right letters from the right people.

Yesterday was Nicole's first full day here. She is so relieved to be here and yesterday was the first day she felt hunger (later in the day) in 8 weeks- since this relapse within a relapse began. Today was not so great and her hunger wasn't as great. But she always tries eat. She has lost a lot of weight. But the fact that she had that hunger yesterday for the first time in 8 weeks was a maybe small sign of good things to come. Because her psyche is so tied into autonomic stuff _ I am hoping that this sense she has of being "tucked in" at our home will help to bring her around. She needs lots of love and nurturing and can get that more readily here. She did not grow up in this house but she does feel at home. I cannot even put into words the relief she feels to be here- and grateful- she is so grateful. Within ten minutes of being here she broke into sobs of relief. She was ready to come here and felt she had made a good decision.

This is a bad, bad relapse. She has come out of relapses in the past slowly even without salt and fluid loading which she is doing. And she has come out of it without Beta Blockers. Still I am afraid of the fact that she is not using a beta blocker. The doc who came today is starting off with some natural things once he gets some test results and maybe some traditional drugs but he was not big on the beta blocker. I don't know if he will change his mind. He wants to run those tests before he gives Nicole anything. I don't know if in time he will want her to try "drugs" as opposed to natural things. At this point I don't know what to think or expect.

I have called lots of local docs- like cardiologists and neurologist and threw around the POTS lingo. Nadda. I called a nephrology group at our local hospital and also threw around words POTS, dysautonomia, hypovolemia. The nephrology group secretary got back to me and said that they knew about this. To what extent I don't know but I showed my husband the list of docs in the group and he works at the hospital with many docs as a bio-statistician (among other things) and he said that one of the guys in the neph group was a friend of his. So we are going to put together some talking points and my husband will call this one doc and have a long talk with him.

I think that having this illness is so horrible but to have to reach around so hard for help is just beyond my comprehension. The whole thing- this illness - the severity with which Nicole suffers from it and the lack of help is beyond my comprehension. Every day my husband and I talk about the sickness in our hearts and the pits in our stomachs. I'm sorry to be so negative right now. I am just so sad and griefstricken. I just need to vent at this point even though it was hard to get up the energy to do so until now. I feel so fortunate to have all of you caring folks and this forum.

I just hope and pray that over time Nicole will improve with time and by being here. Anyway I just wanted to update you about her and say that I have checked in almost daily to read what is going on with all of you. But I have not been able to get up the psychic energy to get my fingers onto the keyboard to do much more than respond to a couple of your posts. Nonetheless I have kept good thoughts for all of you in my heart.

I know I've asked before but if you could send some positive vibes again this way I would be most grateful. And one other question- does anyone use clonadine and why did your doc give it to you?

Regards,

Beverly

[Ernie]

Hi Beverly,

I feel so much for you and Nicole. I have read your post and it is so touching. I admire you for the care and love you give your daughter. I would also appreciate having a mother like you.

I think that it is a good decision to have Nicole live with you. She will be able to improve faster. Just watch yourself (and your husband) for caregiver burnout.

Thanks for updating us. I was wondering how things were going.

I dont' know about Mayo because my country won't pay for it and I don't have out of pocket money to pay for it. I know that if you have "inside connections" you get in faster.

I took Clonidine for the high BP and it increased the fainting immediately. I tried it 3x and then I definitely stopped it.

For years I was able to go with holistic medication for my condition but now I have gotten too severe and I need regular meds to increase my BP and lower my HR.

I still use herbs for my allergies and to boost my immune system.

I'll be praying for you and Nicole.

Hugs

Ernie

[wsc]

Beverly,

My heart is breaking for you, your daughter, your husband and your family. Reading your post really touched me. Nicole is so incredibly lucky to have you for a mother. What a blessing you are to her. I'm new here, so forgive me if I ask questions you have already answered. How old is Nicole? How long has she been dealing with POTS. I'm so totally taken aback by how sick she is. How frightening. Poor girl. I am thinking of you and your family.

I was recently diagnosed and was given Toprol. I was also taken off of birth control. I am not nearly as sick as Nicole, but I seem to be feeling somewhat better with the Toprol. I'm only just beginning to learn about POTS, so don't really have any advice, but I just wanted to say that you truly are and incredible, loving, and inspiring mother. We should all be so lucky to have someone like you in our corner. I hope you find some answers and Nicole can somehow find better quality of life. I'm sure being home with you is a wonderful starting point.

[MightyMouse]

I don't have any words of wisdom...or even ideas about how to help Nicole feel better, other than to say I will keep you and her in my thoughts. I hope she pulls out of this tough spell soon. Big hug.

Nina

[yogini]

Beverly,

Thanks for the update. I don't have much time to write, but I read your earlier posts about the doctor not being to help and was thinking about Nicole. That is really heartbreaking. I am glad Nicole is home with you now! If there is any way you can get her to Mayo by air ambulance, I think it would help. I encourage you to take the Feb appointment if you can get it, and keep checking for cancels. Feb is only 2 months away. It seems like a long time, but she has already suffered for so many months, and it would provide a ray of hope in the long run.

I know it's much faster to get into Mayo if a doctor refers you. I got in by having a friend send an email around at my work. It turned out someone's dad was a doctor there. Maybe someone at the hospital where your husband works has a contact at Mayo...

Wishing you the best,

Rita

[JLB]

Hi, Beverly. I don't have any experience with the things you asked about, wish I had something more to offer... but you most definitely have my prayers, and you and your family will remain in my thoughts.

[blackbirdsings]

Hi, I have POTS and a bunch of other stuff and have been reading here for some time...Finally got a name so I can post. I sent you a message of support.

I've been very sick for several months and doctors were not treating me. Being sick has made my fainting, pain, not being able to stand much etc. significantly worse. I am mainly in bed, due to being so sick. They did a cat scan a little over a week ago. It really showed tons of fluid in my sinuses. My face hurts, deep circles and all swollen. I am now on an antibiotic for 2-4 weeks but still feeling horrible. Just wanted to lend support because I am 23, at home being taken care of by my parents. I think you are doing a wonderful job with your daughter. I don't know what I would do without my family to help me out. They make sure I have my meds, food when I can eat, and take me for car rides etc. so I am not always stuck in the house when I am not able to do much. My doctor doesn't want me around crowds of people either right now.

Have you looked into NIH? I think they are really good, and that might be an option for Nicole.

[blackwolf]

Dear Beverly,

I can only hope that having Nicloe there with you can make all your lives a little easier. I am so sorry that anyone has to go through any illness like ours. As to referals to the Mayo, are you talking about Rochester MN? I was sent there for testing that resulted in hospital asmittance. But my doc had suggestd that I go right in to hospital when I had gone there, I wish I had. Air ambulance is terrible expencive and I hope you can find a group to help you. Ask at the local hospital about any nonprofit groups that maybe heading out that way and see if you can get a lift.

I send you all my prayers and best wishes for a speedy recovery.

Blackwolf

[funnyfrog]

Hi Beverly - I am glad to hear that Nicole is home with you-She is so lucky to have you for a mom, caring for her and trying to hard to get her help to get her better. I don't have a great memory so I forgot what state you said you live in, but did you try to get to speak to Dr. Robertson at Vanderbilt University Hospital in Nashville, Tn? Maybe Nicole would be able to get in there sooner - Dr. Robertson has been doing work with POTS for over 20 plus years and maybe would be some help for Nicole - Just a thought, If thats not an option, I agree that you should keep the Feb.appt at Mayo in the meantime. I will say a prayer for your family and esp. Nicole for her health to improve and will be thinking of her this week on Thanksgiving. Have a good night. Beth

[Gena]

I just wanted to reiterate that I think Nicole has wonderful parents and is lucky to have a mom who tries to understand all of the nuances of POTS and what she is feeling from one moment to the next. Please tell Nicole I am praying for her with all of my heart and soul. Remind her to try to think positive thoughts and to send her body affirmations of healing as often as she can.

I know when we're in the PITS of POTS, it's easy to dwell on how awful we feel. I find that if I choose a positive message or two and say it over and over (sometimes I write them down or say them out loud) that my state of mind really improves and eventually my body responds to those healing thoughts if I do this frequently through out the day. It's like a suggestion to the body, for instance... "My heart and blood pressure are stabilized and normal. I feel healthy and strong." or "God's perfect and divine health is flowing in me and through my body. I am strong, healthy and whole." I find that repeating messages to my body gives me something to focus on instead of thinking about how crappy I feel. I'm a firm believer that our bodies do respond to our thoughts. (This is often easier said than done, so sometimes I re-read the book called the Dynamic Laws of Healing to inspire me when I'm feeling down.) I know it must be difficult for Nicole to keep her spirits up right now, so I will definitely send some postivie thoughts and prayers her way.

[MomtoGiuliana]

Beverly

You and Nicole and your husband are in my thoughts. Thank you for letting us know how things are. I am glad to hear that Nicole moved in with you for the time being and that she feels it was the right decision. I am so glad she has such a loving and devoted mother. When I was that ill, my mother was right there with me, too, and it made all the difference, emotionally, and I think it helped me recover much faster.

It is unbelievable that someone can be so disabled, and yet not seen as a very high priority case by physicians. Yet I also experienced this. It is horrible and so very hard for you as the caregiver, as well as for Nicole.

Please rest and take care of yourself, too.

Hugs to you both, Katherine

[wareagle]

Beverly--First, I want to thank you for being such a wonderful mom! I myself have moved back with my mother and words can't express how much her support and love mean to me..know that you are Nicole's angel!

I have been on Clonodine for almost a month now..my doc. wanted to try it to "break up my sympathetic tone". I take 1/4 tab at bed time and have had no bad side effects thus far. It does make me a little groggy..don't know if I'll increase the dose or not. Most take it 2x's a day..but my doc says it's okay for me to just take it at night. Hope this helps!! Please give Nicole hugs..and yourself a pat on the back!!

Michele

[Guest veryblue]

Sorry to hear about all Nicole's troubles...I had no idea that she was in such a bad shape. It's great that she moved back in with you and your husband...I would never want to live alone with this illness....and I'm probably in better condition than anyone else on this board. I hope she gets some relief soon.

[Nicole's Mom]

Thanks all for your kind replies and hugs and prayers and suggestions and answers to my questions. Today the doctor's office called- -the doctor who came here yesterday to pay the house call- and we learned that Quest Labs will be receiving orders from him to come to our house to take blood and urine over several visits. We aren't exactly sure what approach this doctor will take but he does integrative medicine being both an MD and and ND. And he seems smart and creative and willing to learn. I'll let you know. . .

It is indeed a small world. When I met the doctor- I realized that I had met him at his house last Spring. I had gone for a memorial ceremony for his mother - Jackie- who had been in a writing group I had hosted at my house for a year and a half. His mother had sat at my kitchen table every other Thursday for well over a year until illness debilitated her and then took her life. She was in her 70's. Actually the other four of us in our writing group took turns reading to the "assemblage" at the backyard ceremony- Jackie's favorite vignette - one of many humorous and poignant vignettes she had written and read to our group. I still have all of her writings. Anyway - I don't know why I'm telling you this- I just felt like it.

Nina- thanks for the hug and saying that you will keep us in your thoughts. It means a lot.

wsc- fine to ask questions- welcome to this great forum- Nicole is 28 and got POTS when she was 20. We can look back and see signs. She has not been bedridden all of the time but way too much.

rita-thanks for your wishes and your advice about Mayo. Much appreciated.

JLB- thanks for your prayers and good thoughts- you are so thoughtful and kind.

Blackbirdsings- Thanks for your personal message and I'm glad to see that you got a name so you can post on this forum. Welcome to you. I hope you find some relief as well. There is a lot of information here and a lot of kindness and support. Keep posting and hopefully you will find some answers and we will learn from your experiences as well.

Blackwolf- thank you for your empathy re: this illness and your imput re: Mayo. I didn't know there was a Mayo other than Rochester, MN or am I having a vague recollection that there is a satellite in Florida?

Funnyfrog- thanks for your helpful words and your wishes for us and your imput about Vanderbilt. I've noticed others mentioning Vanderbilt and I've heard of Dr Robertson- seen some of his literature. Maybe it is something to look into further. Others on this forum have been there. Maybe in time I will post a question about their experiences.

Gena- thank you for your kind words and for your "mantra" for making one's spirit feel better. And thanks for the book idea about healing. Just today I looked up some books about healing on the internet. I will check out the one you spoke about.

Katherine- thank you for your support. You are always so supportive to so many of us. I know that you really "get it". You are so there for Nicole and I.

Wareagle- I'm so glad that you also have found comfort back at home with your mother. It is so important to healing. And thanks for answering my question about the Clonodine. I asked about it because yesterday the doctor mentioned it in passing as he was gathering information.

veryblue- I'm glad what you see about yourself. That is so important. Thanks for your thoughtful words. You always respond with such kindness regarding Nicole.

Ernie- Thank you for your response. I'm sorry that you cannot get to Mayo. Where do you live- I know you've said before but I have forgotten.

Today I picked up a small Turkey and it will be nice to have us here together for Thanksgiving. Later in the evening some family may come by for a quiet visit with Nicole who can't take too much exertion. She is looking forward to this. It is a tough time and I am heeding your advice to try and take care of myself. It is hard but I think it was way harder having Nicole in that apartment and knowing all the things that went along with her being there. She is definately - as I said- so much more comfortable here. I think that she has a much better chance of healing faster being here. Her room is half bedroom - half den -as our house is extraordinarily tiny but it's good for all of us hanging out and watching movies or a TV show. There is a couch and chair in there. And today she said that she really likes the room. Being in there.

I am so grateful to all of you for your support. You all understand and empathize and man oh man does that ever help.

Best Wishes,

Beverly

[Ernie]

Hi Beverly,

I am your next door neighbour. I live in Canada!

Here we have a social health system which is about equivalent or less than Medicaid and Medicare. When we need a specialist either for diagnosis or surgery the waiting time is between 1-2 years. Our medical technology is lagging far behind yours. We don't have enough doctors so some people don't even have a family doctor.

I went to Dr Grubb for the initial diagnosis and medication. I had to pay out of pocket and it was worth it.

Ernie

[geneva]

Hi Beverly, I just wanted to add my thoughts and prayers to those already expressed for Nicole, you and your husband. I know from personal experience too that being in a place where there is someone else in the house will bring peace of mind for Nicole. I stayed with neighbors for 6 weeks after coming out of the hospital. Knowing she has her parents surrounding her may be the most powerful thing she can do to start the long climb back. It is so wonderful that she is having some hunger!

I have been to Mayo but I was not admitted so don't have any input for you. Even going as an outpatient for 3 weeks was exhausting and worsened my symptoms so I fully agree with your approach of in patient for Nicole.

Please send a special Thanksgiving blessing to Nicole. I have enjoyed getting to know both of you and hope that the new doctor will have a positive impact on her health. I don't believe it is just coincidence that you and his mother were friends!

[geneva]

oops! must have hit twice...sorry

[goldicedance]

Hi, Beverly...I will hold you, Nicole, and your husband in my thoughts and hope that her being home with you will help perk her up in more ways than one. Last month, when I was really in the bottom of the POT hole, my doctor was in touch with the Mayo. I would have transferred from Maryland right into the Mayo hospital. But, since Dr. Low and others were going to be away, there was not much point. I will be going there in the next month. I have seen Dr. Low a few times.

I hope that Nicole is not spending all her time lying in bed even though I know that's when she feels the most comfortable. While paradoxically you feel better all snug as a bug in the beg, you are actually doing your body more harm. It is easy for me to say now because a few weeks ago I stayed in bed in the hospital for several days because I felt so bad due to the gall bladder problem. Each of the specialists who saw me remarked that it was important to get out of bed--sit in a lounge chair with feet propped up--in order to maintain some conditioning. They stressed that any one--even someone in good health--would have POTS like symptoms when they got up--drop in blood pressure and increased heart rate.

When I first started with POTS problems back in 1993, I was first put on a beta blocker which did not help all that much. The next step was clonidine. No luck. Eventually my doc located a cardiologist who, because he had studied at Vanderbilt, was really interested and knowledgeable about POTS. I was even in the clinical trials for midodrine. During the past several years, POTS has reared its ugly head several times--generally landing me in a hospital to get fluids, medication switches, stop migraines. One time I even tried phenobarbitol.

Right now, I am having good luck with Mestinon, DDAVP, neurontin, and zoloft. How long that will last remains unknown. Sometimes I feel like I am being held together with bandaids.

You never have mentioned what meds Nicole has actually tried. Has she tried Midodrine? Neurontin? SSRI? Clonidine? Mestinon? Octreotide?

Where (i.e, state) do you live in? I traveled to WV to seek the help with Octreotide and like I mentioned before have been to Mayo twice. The first time my cardiologist (who apparently knew Dr. Low from autonomic society meetings) wrote a very detailed referral letter. The second time (my cardiologist had already given up patient care) following a terrible POTS spell I called the Mayo myself--it took about 2-3 months to get an appointment.

Who are you calling at the Mayo? There are several doctors there with an expertise in POTS. As someone else mentioned--Vanderbilt is also a hotbed of knowledge.

I feel so bad for Nicole. She is too young to feel this poorly.

Pass on our good vibes to her.

Lois

[DancingLight]

hello beverly and nicole...

i don't have anything more to add i don't think!

you have already gotten lots of good tips. i am sure being at home will help all of you feel better...and as you said, it is nice to hang out and watch tv or movies together...it is hard to enjoy the time together sometimes b/c the POTS person feels like crap and the caregivers are exhausted...BUT at the same time, i realize i have had so much more 'bonding' time with my parents than i would have had if i didn't have POTS. so, hopefully you can cherish some of your time to be together...

have you watched any good movies?? better go rent that new harry potter one!

i hope that you get some answers soon or find something that helps stop the cycle of this relapse. i second lois' tips...if at all possible! i know, so much easier said than done. what happens if nicole gets out of bed and tries to sit up? tachy? flushing?

hope the visits with friends and family nourish the soul a bit over the holidays!

emily

[Radha]

dfg

[Radha]

im so glad that i can post replies again! the forum wouldnt let me for past 2 weeks! anyway, i wanted to commend you also on what a great mom you are, i'm bedridden and my mom is my primary caregiver and she is a godsend, my best friend, counselor, mother, my angel, i dont know how i'd survive without her, actually i wonder if any of you get panicked and stressed about the worry that you wouldnt be able to survive if something happened to the person you are depending on for every little thing, my mom's love and support is what keeps me going and i sometimes get very worried how i could survive if anything happened to her she is healthy now, but you never know what could happen, i tell myself this is no way to live, worrying about what might happen, but still when you are depending on someone else and are so used to them, its scarey to think how you would survive without them, i mean no one is going to love u and be so dedicated to you like your mom! not anyone you hire anyway, thanks for listening,and i hope that nicole gets some relief soon,

radha

[Jersey Girl]

Dear Beverly, I am glad to hear that Nicole is living with you now, even though she has been going through some very rough times. Are you very far from New York City or Boston? If you look at this web site, there are autonomic specialists listed in both these cities. You might be able to rent a van and have her lie down to make the trip. We traded for a Eurovan (VW) 1 1/2 years ago because I didn't think I would ever go anywhere again, and it is comforting to know that I can just lie down when I need to. I hope that these tough times pass real soon. Martha

[Nicole's Mom]

Emily, Thanks for the recommendation for the Harry Potter movie. I came so close to grabbing it from Blockbuster just 1/2 hour ago (I just saw your post- right now) but I wasn't sure if Nicole had seen it before she came to live with us. Anyway I didn't get it but Nicole said it should be here in a few days via mail via Netflicks. You are so insightful (and experienced) to state how the POTS person feels so sick and the caregiver feels so tired so it's hard to hang out but in just the last two days Nicole is a little more perked up at night in that she can hang out more easily and have conversations. She is like lead until way into the day. Tonight she and her father are going to watch The West Wing and her father is going to give me a foot massage while I read something mindless like some dopey magazine. If only I can get dinner made first for the three of us- which presently seems like a daunting task but I'll get it done. My husband will clean up afterward. He is the one who has all the physical energy. I hope you have a nice Thanksgiving, Emily. And I hope you find the relief you need too-so you can get well too and get on with your own life.

Lois- thanks for your good vibes and your suggestions. Nicole cannot sit up for more than two minutes without getting sicker but her bed is raised so high at the head I'm surprised she doesn't slide down like one would off a sliding board. It's raised more than what is recommended to prevent deconditioning. The last two evenings being a little perkier - as I mentioned to Emily- she is able to prop herself up on her elbow for short periods of time.

Radha- Nicole has her moments when she worries about a lot of things but she does not worry about me kicking the bucket or anything. I am so glad for you that you have such a loving mother who is your angel, counselor, best friend, and godsend. If your mother is that strong and can wear that many hats she will be around for along time. She sounds like she is in way better shape than me (as I've mentioned I have chronic Lyme and I am not going anywhere soon). One thing that Nicole is good about is understanding that I need some space. That helps. Like today- her therapist came to the house for their appt. and I told Nicole I would be out for a good, long while before and after the therapist. Nicole was all set for food, water, etc. and she smiled at me and said, "have fun, mom." Even though I walk around the stores with a heavy heart I need for her to be giving in that way. I don't leave her alone in the mornings though because that is when she feels her worst and her mood is down. Today her mood wasn't too bad - it's pretty good- but yesterday she was crying for about an hour and venting. Afterward - she felt a lot better. I'm sure it feels good for you to vent too. And vent you must. You asked if anyone knew of a doc who does phone consults. Where do you live? I understand how hard it is to travel because Nicole is in the same boat. Maybe there is a way to find a doctor to come to you. We had one come here Monday. It's rare but possible. Today I called his office (his secretary) to see if they got the referral number from Nicole's pcp and the house-call doc answered the phone. He was so nice. He seems to really be thinking creatively about Nicole's multi-pronged problems and dysautonomia (highly possible a chronic pathogen involved, plus pcos, allergies, yeast, etc.) On Tuesday he will fax Quest Labs all the bloodwork and urinalysis he wants to do for endochrine, catacholamines, etc.- the works. They will draw blood in increments. Plus I think he does saliva testing for specific hormone deficiencies. Anyway I told him on the phone today how much we appreciated his efforts and that we were so grateful that he is getting invested and he very kindly said "I want to help Nicole get better." I had described yesterday how his mother was in my writing group - well it is a very small world because Nicole's therapist who came today to see Nicole also uses him as her doctor. She thinks that he will try to help Nicole get better. Anyway, Radha, maybe that is the route you could try. It might take a lot of phone calls by your mother but if you can find a doc to come to the house then right away you have a compassionate person. It's not Mayo clinic what we have going here but it feels pro-active. We can't get out right now but help is coming to us. I encourage you to try that route too. Take good care and thank you for your kind thoughts. I will keep good thoughts in my heart for you.

Best Wishes to everyone. Have a lovely Thanksgiving.

Beverly

[Nicole's Mom]

Geneva,

Thanks to you as well for your response and about your experience at Mayo. I wish you a happy Thanksgiving as well and will pass on your thoughts to Nicole.

Beverly

[ethansmom]

Hi Beverly, I just wanted to add my thoughts breifly. I really think that you are an amazing person, and your daughter is so lucky to have you to care for her. I'm sure she is very releived to be at home...I know when I was bedridden, the scariest and most lonesome aspect of the whole illness was being by myself, all day long my boyfriend would be at work and my friends too...I spent a lot of time alone and it was hard. I am praying for Nicole and I hope she can get back to a functional level VERY soon...maybe baing at home is what she needs right now! Tell her we are rooting for her, and I hope you all had a Happy Thanksgiving!!