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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 4/9/2010 10:18 PM (GMT -6)   
 Dear HW Family,
      I feel rather heavy as of late and need to get somethings off my chest. I am unsure if I am looking for adivse or just a shoulder to cry on. Hopefully, getting it out will help me to regain some clarity reguarding my current situations. A course of action....
      I went to the grocers store. I have been to the same store for years. On the way to the store my vision was...becoming diffacult to focus (come to think of it that morning aswell). By the time I reached the store I had an increadibly hard time seeing. I made it through the vegetables and fruits fine..but as the vision got worse as I worked my way back.. I couldnt see or make out the signs up top each isle or down each isle. As it got worse and worse I began to panic. Up and down, up and down each isle I went..only see "clearly" what was ooh..8 , 10 feet or so? In front of me. I felt so lost, and frightened. I tried very hard to maintain my composure though I am sure I looked rather silly going up and down, up and down each isle. I did eventually get the shopping done. Time went by so slow. I felt so lost...so frustraited. Frightened.
     Later when I was thinking about it, and talking about it with my husband.. why didn’t I go get my husband at the other end of the store, so he could help me? Why didn’t I find what I needed by memory? 10years, and trust me the store hasn’t changed that much.
     So.. here it is a week later and the vision is still bad. This is different than the vision loss from the "cells stripping" that the eye surgeon knows about. And as you know when I am ready, there will be numerous procedures on both eyes to restore some vision from the tissue softening and cells stripping... But it isnt "permanent fix". I will have to have "asperation" done over and over, which will enduce a cataract in my left eye (right eye cataract was already removed with synthetic lense implanted) due to the "hypoparathyroidism".  It will continue until the tissue stops softening and the cells stop stripping.(no diagnosis as to why the tissue is softening and cells are stripping because my retena is intact) So im not exactly excited to tell him something worse is going on, in both eyes. ..but, is it something to bother the eye surgeon about just yett???
    ...... I am confused because I have an intense "sting and pressure" behind both eyes and top of my head. A high pitched "ringing" in my ears (the dryer and washer, dishwasher, I have to sit next to, when I need to focus and read...the ringing is so loud). More hearing loss (hearing loss was tested last week BTW if it gets any worse, even the slightest, I have no choice but to get eharing aide) and "vision black out" where my vision fades to pitch black and sounds are faraway.. then vision fades back to normal. All of which have been going on for quite some time, without relenting. And in my heart, I just know.. feel, like the "vision loss / trouble focusing since the day of grocers store" is related some how. I cant explain why, I just have.. this feeling. That it is connected to the other problems. And those problem, are why I had to meet the otologist (hearing done last week) , an ENT (next week) to see if these problems are related to something that the ENT can diagnose and if not I must then meet a Neurologist. The neurologist will have many costly tests done (ive been warned that this is the next course of action).
       On top of it all I saw a rheumatologist a few weeks ago (A very kind, gentle man). He took many blood samples and had full xrays in 4 dimensions of all 4 areas of my spine and then both the hipps done with 2 views each. I received a call from his receptionist saything that he has mailed me a report, his findings and suggestions. That if I needed more clarification that he had also sent the same "reports to my primary care who could also explain the next course of action further". This confuses me.
1st.. why a letter? I know I live an hours drive away, but why not see me in person?
2nd.. why have your receptionist call? why not call yoruself?
3rd.... something doesn’t sound right and when I get sent back to my "core group" of doctors who take care of me, I always get worried.... I have plenty of history to justify the worry. So... I guess I should relax til the mail is delivered to me? ...gosh.
     At some point, I have to tell someone I cant walk. It was down to 45mins or more of walking and deal with stiffness and soreness for the remainder of the day. I was able to adjust to it okay. No choice really. I am young mother with children. That was last fall/winter 09.
      Now it is 15mins or more the swelling and tenderness for 3 days after any walking of any kind. While I am trying to walk the burning is very intense. I do not think my knees are "hurt" them selves. What I mean is, I do not think that my knees are the problem. My scoliosis has progressed, no doubt about it (I can tell visually.. I still havnt received "radiology & findings report from the rheumatologist") and the majority of my weight is on the right hand side. My right hipp is coc up 6 to 7 inches higher than the left hip and rotated towards the rear.  The left portion of my upper torso is rotated up and out. I think my knees are hurting from the uneven amount of weight and unstable posture. Never the less I have got to find a way to walk better, quick!!!!  Who do I tell about the mobility? Spine specilist? Primary? not the endo, oto or surgeons obviously.... but who?
      ...as some of you know my husbands family needs me in Florida. I must go. It is important. How on earth am I to keep up? I need help to walk. I don’t know who to tell. And I need help quickly as I leave for Florida at the end of May. I am running out of time to get my rear in gear! 
        And just how, exactly, does one travel with medicines and medical devises? Do I talk to my doctor about send perscriptions down there? My pharmacist? Do I carry the medicines and devices with me, on the phane? If so, what type of documentation do I provide? Do I go with the flight that is non stop NM to FL ? Or do I go with different airline and have lay overs, 2 to 3 cities along the way?.....feel dizzy already.
       ...not that I am angry about it..but it is hard to remember that just 2yrs ago the extent of my "medical needs" consisted of Acne treatments and yearly vaccination.
      Gosh I am glad my family is well tended. My daughters are blossoming and my home life is fablous. My husband steals my breath every time he is near. My daughters fill me with joy that knows no bounds!! 
      .....But my tendancy to ignore the obvious (or anything uncomfortable) is about to get me into some serious trouble and if I don't watch out I will be between a rock and hard spot before I know it.
      Okay, now that I have written out a short novel I will end this here.
      Thank you, dear friends, thank you for lending an ear to me.
*Deep Breaths*
 *warm huggs*



Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood



Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 4/9/2010 10:26 PM (GMT -6)   
Dani, I have no real answers for you, but I do have a big huge massive hug for you!!!!

It sounds like you're getting overwhelmed with everything that's going on....I think you need to slow down for a bit...stop and breathe...and then prioritize what you have to do, and the steps you have to do to accomplish each task. I don't know your history well enough here, so forgive any obvious questions, but WHY do you have to help out in Florida, and WHY are you afraid to tell anyone of your trouble walking? It sounds to me like you need a cane/walker/wheelchair for outings and if that's what will help you, why wouldn't you do it?

A couple of other thoughts...your doctor probably is mailing you results and suggestions to avoid you having another fee to pay to see him. The other thought is that is sounds like your health issues are getting worse, so you need to start preparing for future tests and treatments, whether you want to admit it or not.

I am so sorry things are getting worse instead of better for you. I hope the venting helped, and I hope just knowing we are here for you helps as well. I am sure the others here know you better and can offer better advise and comfort. Just know that I'm thinking of you and sending prayers and good thoughts your way.

Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (Surgical Menopause and drug related), plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine plus Vitamin D and Multi-Vitamin daily

Screaming Eagle
Forum Moderator

Date Joined Sep 2009
Total Posts : 5005
   Posted 4/9/2010 10:33 PM (GMT -6)   
Good evening Dani! I too have no real answers for you, and I feel terrible for you, as you have so many health problems, and it seems more than the average bear. My heart is always with you, and we all hope you will find some real help soon. Thank you so much for sharing this with all of us. We so dearly want to support you to the fullest.

DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.

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Date Joined Aug 2006
Total Posts : 9607
   Posted 4/9/2010 10:42 PM (GMT -6)   
HUGZ to you and Prayers...go see your eye doctor maybe he/she can point you in the right direction...
keep us posted as to how things go, you know we care and will be thinking of you
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...


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Date Joined Apr 2010
Total Posts : 2261
   Posted 4/9/2010 10:46 PM (GMT -6)   
oh Dani.  i'm sorry to hear that things are getting worse for you.  (((((hugs)))))  I can understand it weighing on you about your condition getting worse instead of better.  I wish i knew more about your conditions so that i could give you more support, but know that I am here if you need someone to talk to.  I can always lend an ear.  Please keep us updated on how things are going.   Take good care of yourself.  I hope you have a low pain night.tongue 
Loretta (9yrschronicpain)

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Date Joined Mar 2008
Total Posts : 2976
   Posted 4/9/2010 10:53 PM (GMT -6)   

All I can say is wow! You certainly have a lot going on. I really can't imagine how hard this is on you not just physically, but emotionally. I know how scary it is losing your vision. I know that this has been going on for some time now, but if you suspect that something has changed, please don't hesitate to go see your ophthalmologist. Your eyes aren't something that you can afford to mess with (I learned this the hard way -- almost lost my eye after my initial injury because I waited so long to see the eye doctor & this probably contributed to my CP and some other ophthalmic problems as well).

As for the report from the doctor, don't stress yourself out about it while you are waiting for it to come. There isn't anything you can do, so it is best not to think about it. Or if it is really bothering you, call your doctor on Monday & see if he would be willing to tell you your results over the phone. If he doesn't call you back, then you might even think about setting up an appointment to talk with him, that way he can't evade you. I've certainly had to do that before.

I hope everything turns out okay. You are so strong. Hang in there. You're going to make it through all this!


edit: Dani, have you ever seen a neuro-ophthalmologist before (a special ophthalmologist who is either specialized in neuro-ophthalmology or neurology & ophthalmology)? If you haven't, you might consider asking your ophthalmologist about a referral to one. They deal a lot with neurological & degenerative diseases of the eyes.

Post Edited (skeye) : 4/9/2010 9:56:31 PM (GMT-6)

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Date Joined Aug 2008
Total Posts : 3193
   Posted 4/9/2010 11:49 PM (GMT -6)   

First... I love ya... because you can write a book... just like me :) :) I'm glad you did, though :)

I'm sorry for all that you are having to deal with. I really am. While we have different health issues....I know exactly what it's like to have multiple, scary health issues... and still have the need to tend to young children. It's a sad...frustrating...scary....thing, I know.

I wish I had more "answers" but, as someone in the struggle, too... I don't. BUT, I do know about traveling to another state while on medications and such.

I'm sorry if you said this...but how long are you going to be gone?? Well, re: medications - do you go to a "chain" pharmacy?? If you do, then most prescriptions are easy to fill in another state. It will be in their computer.

If you are trying to fill a Class 2 script (like for pain meds or whatever)...that's where the adventure begins... because you need a "written" prescription. It varies from state to state whether they will accept a script from another state. Trust me... when we moved from CO to CA...this was a nightmare situation for me for several months...until I found a pain doc here.

What I would suggest is calling a pharmacy near where you will be... and tell them your situation. See what they would need to fill your prescription.

Re: traveling w/ meds - I believe you just need your medication in your medicine bottles that have your name on it. That's all I needed when I traveled.

One more thing... (and if you've shared this...I'm sorry again!...my memory is horrible!!)... do you have a disability plaque for your vehicles? I put it off for a really long time.....a big part because of my "pride" (stupid, I know).... but have had one for a month. I don't get out much... but, when I do, it's really made a difference.

Oh, Dani... I wish I could do more. I'm sorry. But please know you have lots here thinking about you... and pulling for you... :)
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 4/10/2010 1:11 AM (GMT -6)   
Hi Sweet Dani!

Don't worry about your prescriptions. Many people do this sort of thing all the time. Think of retired people who are traveling much of the year. Let your doctor take care of how you will get your medications. He might predate a prescription or something like that...I'm not sure....but I know it's not that difficult.

Relax and love that family!
Gravitation is not responsible for people falling in love.
Albert Einstein

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3602
   Posted 4/10/2010 1:37 AM (GMT -6)   
I keep praying for you! Reading your post fills me with concern for you. Do they know what is causing all this? Is there anything that can be done to stop the progession of this? Is it absolutely necessary that you go to Flordia? I am sorry for all the questions! I will continue to keep you in my prayers,.

Dani I wish you only the very Best!

White Beard

Regular Member

Date Joined Feb 2009
Total Posts : 487
   Posted 4/10/2010 2:13 AM (GMT -6)   
Hi Dani:

I'm so sorry you are going through so much, and not knowing what is causing it has got to be frustrating and down right scarey!

I know I haven't been posting much lately, but I think of you often and worry about you.

Lots of soft hugs to you!


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Date Joined Feb 2010
Total Posts : 914
   Posted 4/10/2010 7:34 AM (GMT -6)   
Oh my Dear Sweet Dani girl , I'm SO incredibly sorry you are having these difficulties , its so unfair , oh my girl please do everything you can to take care of your sweet self .I feel so very frustrated that there is nothing I can do to help you , man its the most difficult thing .Please know I'm thinking of you all the time , praying for you and caring about you and your family ,.Oh Dani girl if theres any justice in this world you'll recover thats my prayer and wish .Thinking of you Mikel
HIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment  .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment              .Medecines -    ,viracept,truvada, lasix .  oxicontin  '                                                                                                                         

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Date Joined Apr 2009
Total Posts : 856
   Posted 4/10/2010 8:33 AM (GMT -6)   

I am so sorry that you are going through this. Even though I am not in your shoes, I know that it's hard to let the doctors know what is going on. I did read your whole post, but I don't remember reading if you told your doctor about what happened at the food store. If not, can you please call your doc on Monday to tell him? What you went through is awful and I am praying for you as well.

Also, yes --if you don't have a handicap placard, you should definitely get one! I have had one for years, and they are the greatest because they really help. If you don't have one, it would be good to get before you go to Florida.

The placard has been a big help to me.

Again, I'm so sorry that all of this is happening to you. You are so positive through it all and so thankful and it is so wonderful to see that.

((((((((((((((Hugs back to you)))))))))))))))


Regular Member

Date Joined Feb 2010
Total Posts : 358
   Posted 4/10/2010 2:09 PM (GMT -6)   
Dearest Dani,
First of all, thank you for such an open, honest and endearing book.
What a terrible thing to be happening to such an unbelievably kind, caring and loving person. I hope that you will find the problem and they will be able to fix it. I don't know how you do everything you do! I have no words of wisdom in this area except wondering if you have been checked for diabetes (I didn't see where your dx's were) and MS? Just wondering. Dani, if it were me in your position traveling as long as you will have to even on a plane, I would do connecting flights with layovers and a wheelchair at each stop. I say the layovers simply to get you out of that stale air and give you the ability to get up and stand without being crowded as you surely will be on the airplane. The wheelchair for obvious reasons and certainly you would want to have a long enough layover for the time to relax a little and to get from gate to gate. I made a trip 2 years ago to attend the birth of my youngest granddaughter and didn't change planes. It was painful on the plane, but by the time I got off the plane I was in no condition to help anyone! That's my two cents worth and I hope it helps. As far as devices and such, all you have to do it contact the airlines and ask what you need. Your doctors will certainly help you in whatever paperwork needs to be done. Please let up hear from you as much as possible and know you are loved.
I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4
DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Had emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06.
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.

Veteran Member

Date Joined Apr 2009
Total Posts : 856
   Posted 4/10/2010 2:26 PM (GMT -6)   
Also, just so you know, I have my own wheelchair. It was one hundred fifty dollars. It's the kind that you can't wheel by yourself, but it is great for trips because it folds up easily!

If you don't have one or don't want to buy one, the airline has them. In my experience, someone who works for the airline will push you, even if your significant other is with you. Sometimes that is easier if you don't need one at your destination.

Furthermore, if you bring a wheelchair, the airline will have to store it under the plane and you should call the airline about a week or two before your trip to notify them. They always store them quickly, so it's not really extra trouble for me and it is well worth it! Most times I forget to call and that's no big deal at all. I just think it's a good idea to call.

When you go through security with your own chair, they will swab it to check for chemicals. They do this very quickly though. Also, you will be able to go through the handicap line. I have never had to wait more than ten minutes in line to go through security because I am disabled and have a chair.

Also, you will be first or second in line (even before first class) to get onto the plane! It makes flying so much easier for me since it is so very difficult for me to take trips due to my pain and illnesses. All of these things make it a much better experience.

When you're in pain, all of the little things help a lot. When people know that you are in pain and having trouble functioning, they are generally very helpful. Flying for me is hard no matter what, but it's much easier this way. Since I have the chair during the trip, I can do much more...even though I still can't do a lot. Sometimes it is the difference between something as simple as me being able to go out to dinner or me staying at the hotel/house.

Sometimes it is hard for me because I don't like to use the chair or cane, but they do help so much.

I hope that this helped you.


Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 4/10/2010 10:43 PM (GMT -6)   
Goodness, thank you all so much for the responses. I am touched. Thank you all very much. I am going to try to respond in order, so, here goes..
  Ms Bunky ~ Pam,
     You are right. I did need to priortize. This morning I got everything in list and began knocking each item out one by one. By 11:30 I was tired and frustraited, but glad so much was accomplished. Everything from hotel, airfare, rental car, Doctor appointments, cat & plant caretaker, perscriptions, excess bulk mail. There is only small trivial things left and those tasks I can spend tomorrow knocking out.  I should have never let so much pile up. What on earth was I thinking?
     We have to travel to Florida to see a family member whose time is close at hand. He is 90 years old  and it is time to get everything in order. He would like to see his great grand babies. Though he cant see much, or hear, he has asked to see us as soon as possible. I do not want to go into too much detail but, it is time for a lot of planning.
     Yes, my health is getting worse. I know I have been bombarded with many "new" doctors as of late. But, I had hoped, and prayed, that this would be the last set... I didn’t want to face the fact that
A. I created this by refusing to meet these new doctors over the christmas holiday 
B. Listen when I was told that over half of the "new" doctors were to see if the problems could be "easily explained".
     I already knew the problems could be leading to something more complex and was warned as much on many occasions. It was my own fault really. I just hope that I learned my lesson this time. I don't want to repeat this ever again.
 ~~> It sounds to me like you need a cane/walker/wheelchair for outings and if that's what will help you, why wouldn't you do it?
       For all the wrong, selfish, stupid reasons my 29yr old brain can come up with. None of which is going to help me in the slightest. I made appointment with the spine specialist about it. It is week before my flight departs. So, hopefully we can get the ball rolling quickly. There wont be much time left by then.
   Dear SE ~ Michael,
      As always you kind words and unwavering support fills me hope. Thank you so much!
    Dear Chart,
      That is one of things on the check list I couldn’t complete today. I had to leave a message and never got a call back. I will be sure to get on the horn with them first thing Monday morning.
   Dear Nine,
     Thank you for your support. My "conditions" is really just a long list of "symptoms" that began 2yrs ago. hearing, vision, memory, levoscoliosis, crumbling of teeth, mobility, tetany, parathesis, insomnia... Somewhere along the way hypoparathyroidism came up, but by the time they figured it out the damage was already done and the surgeons were waiting for the endocrinologist to get it under control so they could get me to a point where I could eat and see again.....which was frustraiting, since I lost my vision again 2 months later anyway. In any case, you get the idea. Big list, ever increasing. It sure getts to me if I have to think about the last two years journey too much. I have lost a lot in a very short amount of time. My doctors keep me as comfortable as possible while I am being relentlessly tested and have "basic needs" repaired and/or surgically restored.
   Dear Skeye,
      You are right. I cannot let my "fears" keep me from reaching for help. What was I thinking? I wish I could bonk myself on the head at times. I did call the eye surgeon, but no response. I will get on the horn first thing monday morning. You are right, I need to bite the bullet and let them know.
~~~>Dani, have you ever seen a neuro-ophthalmologist before (a special ophthalmologist who is either specialized in neuro-ophthalmology or neurology & ophthalmology)?
     I do not know if my eye surgeon specializes in neuro as well. I do know thou, he was only one would had ever seen a congenetial cataract. He removed mine when I was 21 yrs old. The nerves are damaged because they never grew. Last year he removed the protien behind the right lense (the synthetic one). When the "degeneration and cells stripping" started last fall, he contacted my other doctors. That was when the first "hints and mentions" of neurologist began. He will begin the "asperation" to help temporarly restore the vision when I am ready. But he is sure, due to my history, that the asperations on my "good eye" will enduce another cataract. But, apparently the asperation process wont hurt the right eye with the synthetic lense already implanted.
           Still thou, no cause as to why the tissue is softening and cells are stripping. This is something that happens to the eye when person is much older 60+ and is a slow, natural process of ageing. Mine is rapid,  im rather young, and my retena is healthy and attached still. So it is not attributed to macular degeneration.
   Dear Mom~Tina,
      It is different, I think. When we have children and multiple health problems. There is no "Sick days" for us. No day to recover ourselves. Everything in our world is our children. Only given one chance, one chance to make a difference in the world and their isnt "slow down" or "stop" button. It is hard, with children, and requires unique approaches to pain management and treatment options in general. *warm hugg*
      No, I didn’t say before. I booked the flights this morning. Will be a little over 2 weeks. Just took a deep breath, brewed some coffee ( I know, I know, not supposed to have coffee~ the boneloss can kiss my..) made a huge list, and started knocking 'em out one by one until my head throbbed and my spine ached. Husband and the girls went out for doughnuts. Not the most healthy thing in the world....
     I did call the pharmacy, which I should have waited till after I booked the flights. In any case, he said I can fill scripts here and take them with me on the plane. Didn't suggest putting them in with "check-in" luggage. Or I can take just what I will need that day with me and fill 2 weeks worth in Florida. You were right, it is all in the same "perscription record" system. Also, I can mail my TeNS or have one ready for pick up (rental) when I get down there.
     I should have booked the flights first thou, when I called they said they don't mind one way or the other if I bring the medicine with me on the plane, in check-in luggage or in my hands. I just need it to be(this was funny) "in a bottle with my name on it." But that I might want to put TeNS in "check-in" luggage to have it out and ready for inspection.
   Dear Chutz,
      Your wonderful. You know just what to say. *warm huggs* Batch of love and fun day out for us tomorrow. There is much mischief to be found!
   Dear White beard,
     Did I tell you the good news? I have a stable bone density. It was tested in Feburary. But, to answer your questions, no they are "Unsure" of the symptoms that poped up while they were trying to control the Hypoparathyroidism and repair my mouth and eyes.. I am staying between 43-52 calcium. Large differences between testing times, but, stable aswell none the less. 
      Unfortunatly, the levoscoliosis is still progressing and has caused me to loose inches of my hight, and fast. I am down to 5ft 5inches. Kinda spooky knowing I was almost 5ft 9in. just last year.  The stuff with my eyes, hearing loss, ringing (called tennitus), progressing spinal deformity, memory, pain and pressure behind eye and top of head, vision fading to black, etc they are investigating now. I only have to meet one more new doctor next week. He is an Ear, nose and throat doctor. If he cannot give a diagnosis, I have to see a neurologist. Apparently the tests will be expensive if I do, indeed, have to see this neurologist. The Rheumatologist has someone he wants me to see since he took the x rays of my spine a few weeks ago. Not sure if that is good or bad yet... we will see.
     Yes, I have to go to Florida. I must. I am needed. I have no time for my body right now. I know I will pay the price for it.. I just hope the cost isnt too steep.
      Your prayers and well wishes touch my heart. I cannot thank you enough!
   Hey Lori,
      It is good to hear from you! I am glad to see you again, and I hope we have more chances to chatt! *hugg*
   Dear Mike,
      My dear friend, you are have been such a blessing in my life. I cannot thank you enough for your kindess and generosity. You make my heart smile!
   Dear Flower,
        Your support means so much to me. Thank you!
      I tried to contact them to tell them about the vision loss. I never got a call back. I will get on the horn first thing monday morning. Me sitting around "worrying" about it is just casuing the problem to get bigger. I don’t want that.
        I never thought about placard. ... well, gosh. I think perhaps I should bring it up with the spine specialist at my next visit. How long does it take to get the ball rolling on that? My appointment is the week before I leave.
       Gosh I feel too young to be asking for help to walk and help to park the car closer. Come to think of it I think im too young for any of this.... Whoa!   shocked  Okay! I need to get those thoughts out of my head and quick! I don’t want to get a case of the blues, that’s for sure.
   Dear Catz,
       You are wonderful *hugg* No I don't have diabetes. Was born with my cataracts. None of that MS talk! You sound like my husband, who has pushed for some sort of expensive pictures of my spine and head for almost a year now.
       Okay, so when I went to book the flights there wernt that many to coose from. One was straight through, no layover. One was 1 stop in Georgia. Other was 5 stopps along the way. Apparently I should have booked the flight sooner..
        Straight through sounded like a disaster. 5 stopps seemed like I was just asking for one of my girls to have a "Tired and fussy meltdown". So I went with one stop in GA. We couldn’t get seats together, so Ill take the youngest seated with me. Husband will take oldest steaded with him directly behind us. Was a bit frazzled, most of the airlines don’t even do assigned seating anymore!
     Dear Flower,
     Gosh dangit! I wish I had read your post sooner! *sigh* Okay, so I will just call the travel agent tomorrow.. wait, okay. So will call monday and hopefully she can ammend the tickets. Thanks for the heads up. I really appreciate your help.
*Huggs to ALL of you!!*



Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood



Veteran Member

Date Joined Feb 2009
Total Posts : 999
   Posted 4/10/2010 11:20 PM (GMT -6)   
Dani, First off I will let you know that you are in my prayers. As with all of us, every day life has enough challenges but when the extra comes, it seems that there is more than we can handle. Not trying to preach, but many have heard the saying based on a verse that says God does not give us more than we can handle. For me the truth comes in to the equation when I realize that it is not in my strength. We gain strength form people around us and for those of us that believe in God also through faith. One of the reasons that people like us connect on a site like this is to support and be supported. I also know that you have a wonderful family that also give you strength and the fact that they also rely on you contributes to your strength by the meaning and purpose in life.
I am a strange one to say this but try and keep your focus on where and how you can be the best support for others. We often have to make sacrifices and compromises when it comes to doing for others. If we extend too far then we can't be as effective as we could have been. We each make the decision based on what and who we value and then know that we did all we could. I recently found out that the big "S" on my chest was not for superman but for slow down. As you make your doctor appointments and make plans to travel to invest in the life of others, don't forget to take care of yourself. Be blessed and I will contin ue to keep you in my prayers.

Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 4/11/2010 12:19 AM (GMT -6)   
Dani, thanks for your personal replies - you've really helped me to understand more clearly what you're going thru. You are an amazing woman...just remember to take care of yourself, so you can continue to take care of others. Please don't let pride or fear get in the way of doing what you have to where your health and treatments are concerned.

Hugs to you...you are in my prayers.

Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (Surgical Menopause and drug related), plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine plus Vitamin D and Multi-Vitamin daily

Pete trips again!
Veteran Member

Date Joined Nov 2006
Total Posts : 1899
   Posted 4/11/2010 6:26 AM (GMT -6)   
I'm so sorry to hear about all the bad news. You are such a wonderful Lady and Mother and to have your plate so full is heartbreaking! I'll understand if you don't want to but if you come down to Fla. and are somewhere close to me, I'll come give you a REAL HUG!!! You are always in my prayers!

Your Big Brother,


Veteran Member

Date Joined Apr 2009
Total Posts : 856
   Posted 4/11/2010 6:31 AM (GMT -6)   

EDITING TO ADD THIS: I saw that you live in New Mexico. It will be much easier if you bring the forms with you to your doctor's appointment because then he can sign them right away. I hope we can post websites, because I found the MVD (motor vehicle dept.) website that you need to go to to get the forms. http://www.mvd.newmexico.gov/Fill-Print-and-Go-Forms.html

I don't believe that you need to call the travel agent because nothing has to be done about your tickets, but my husband said that it might be good to call anyway just to let them know you are disabled. Nothing to do with the plane tickets, but I guess that it never hurts to call and give a heads up. Each airline has their own set of wheelchairs so you use them! VERY EASY! It has nothing to do with the plane tickets!!

You really don't have to call ANYONE to get a wheelchair at the airport, but again I'm sure it doesn't hurt to give a heads up! I call the airline only if I am bringing my own chair. I have forgotten to call MANY times, and it is not a big deal at all! The only reason I call is because I like to let them know I'm bringing my chair.

You don't need to have a handicap placard to get a wheelchair at the airport. When you go to check in for your flight, just tell them that you need to use one of their wheelchairs because you have trouble walking and seeing. It won't be any trouble at all!!!!

I'm going to look into how long it takes to get a placard and then I'll post. Please, if it will help you, use their chair at the airport...it makes the trip easier...especially getting through security (in my experience).

I hope that you're online before Monday! I am so sorry if my post was confusing!!


Post Edited (flower123) : 4/11/2010 6:02:37 AM (GMT-6)

Veteran Member

Date Joined Dec 2008
Total Posts : 773
   Posted 4/11/2010 10:00 AM (GMT -6)   

Dear Dani,

You are an inspiration to all of us!  You are truly an Angel!  (((((((((((((Dani))))))))))

Everyone has given you great advice as usualtongue

For your Trip:  Some airlines ask if you need assistance when you are booking the ticket, you can call Customer Service and let them know now, they will probably tell you to tell someone when you arrive at check in (in Phoenix we have curbside check in, you can ask someone there and they will get it right away and take you through Security and to the gate).   

I usually get a note from my PMD for all my meds and devices just in case there is a problem.  This has come in handy a few times!

I have found that flying NonStop works best for me, I take my exercise bands with me and do stretches during the flight (this helps tremendously).  

Getting a Handicap Placard is easy in AZ, the Dr. fills out the form (they usually have them or like flower says take one with you), you go to Motor Vehicle, they confirm the paperwork and normally you walk out with the placard in hand.  I don't know if anyone has noticed but it seems like people that DON'T need Handicap parking somehow have the Placards, I have seen over and over again sports cars with young bebopping passengers using HC spots????

Please call your Eye Dr. any changes in vision should be reported ASAP!!

Like Bunky says ASK FOR HELP....when I travel with my 100 yr old Granny, people are more then willing to help!

Sending you warm thoughts and GIANT hugs!!!



Veteran Member

Date Joined Apr 2010
Total Posts : 2261
   Posted 4/11/2010 3:30 PM (GMT -6)   
Thanks for the reply to us all separately.  You certainly have a lot on your plate.  You're in my thoughts and prayers.   You're such a wonderful, caring person. 
warm hugs
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 4/11/2010 4:21 PM (GMT -6)   
Dearest Dani.....what can I add to all of the wonderful advice and information you've been given already?

Probably not much except to say don't EVER pack your prescription medications in a suitcase that you're checking in! Please put it in your purse or some tote that will be carried on with you! I've had too many experiences with my luggage going to Reno while I was going to Los Angeles, for example, to pack something vital like that in non-carry-on luggage.

Also, if you don't really want to deal with a wheelchair, and can still walk moderate distances, an alternative might be a lightweight, foldable walker with a seat to sit on when you need to take a break from walking. Not that there's anything wrong with wheelchairs, except that they're bulky and heavy and difficult to transport. I have my electric wheelchair, and it's really a life-saver because I can only walk about 5 minutes at a stretch before my back pain stops me in my tracks. I think a wheelchair is probably a better idea than a walker, but some people just don't like the concept.

I would also like to join the chorus of voices that have already told you that you must prioritize and make sure that you're not putting yourself at the bottom of the list of people that you need to take care of!! Please take care of yourself, dear Dani!

I'm so sorry that your health is continuing to deteriorate. I'm having lots of vision problems too, nothing as serious as yours, but serious enough to lose my drivers license, so I really really feel your pain in that department!

Sending many many prayers, loving thoughts, and ((((((((((hugs)))))))))) in your direction!
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 4/11/2010 4:33 PM (GMT -6)   
P.S. I re-read one of your posts, and saw where you wrote that you are too young to be dealing with all of this. And of course you're absolutely right, but unfortunately illness doesn't respect age! My three-year-old daughter is getting her first wheelchair; Emma has SO many medical issues, including cerebral palsy. We just ordered the chair last week....she decided she wants it to be pink. Part of me is happy that she will have more mobility but another part is so sad about needing to get her a wheelchair at all! No three-year-old should ever be asked what color wheelchair they want, for goodness sake!!! cry
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


Veteran Member

Date Joined Jun 2007
Total Posts : 702
   Posted 4/11/2010 4:36 PM (GMT -6)   
DAni, I do n ot have much advice. I did want to tell you that I am overwhelmed with the amount that is on your plate, your head must be spinning! DO you see any kind of therapist?It sounds like you could really use someone to help you.

In regards to the plaquard, I just brought the form to the doctor they signed it and I mailed it in. It came in the mail.

I feel really self concious using it but it really comes in handy. I do get looks since I am 31 and dont really have an obvious disability.

Please hang in there and I hope your travel goes well.

Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 4/12/2010 1:02 AM (GMT -6)   
    Thank you all so much for your help. I cannot thank you all enough. It means a lot to me. From the bottom of my heart I Thank You All! I am gonna try to respond in order again, hope it works. So, here goes...
Dear Father John,
      It is ever so good to see you again. And you are right. It wont do me a bit of good to spread myself too thin. It is kind funny you are mentioning this, because my husband just spoke to me this morning about the same exact thing. I will do my best to pace myself in the coming weeks and remember to ask for help.
Dear Pam,
      Your prayers as welcomed!! Thank you so much. Your help is of tremendous use and I appreciate it very much.
     I have missed you! Oh it would be fantastic to meet up with you! There are a few "travel out" days planned each week. We decided that it be best to leave me rest days and re couperation days inbetween the major stuff. I spoke with my husband. He thinks it would be fantastic if we could meet. I will be in northern florida the first week, but the 2nd week I have a few days to what I want.
Dear Flower,
      Oh! Oh gosh, thank you. Talk about hassle free. I cant thank you enough for all of your help. Thank you so much!
Dear Patti,
      My husband agrees that I should bring up traveling with meds to the spine specialist just to be sure. I will make sure to do that.
     We thought we were going to have a on quick layover in GA , but when we got the confirmations it didn’t say 45min, it said 4hours! Yikes! Also the price differed greatly and when the bank account was checked we were charge over 8K by the travel agent!!! We got on the horn right away to the 24hr service line and thank goodness the over charge was an accident, but, the 4hr lay over time wasn’t. Goodness, I am not sure what on earth we are going to do to keep the girls occupied in an air port for 4hrs.
Dear Loretta,
     Thank you for such kinda compliments! Im red from the neck up! I do appreciate the prayers, Oh so very much!
Dear JoAnn,
       That is exactly what the pharmacist said. But the air had said it didn’t matter one way or the other. I think, just to be safe, I will keep them with me. Patti suggested I bring up traveling with medicine and devices with my doctor so I think I will do that too, just to be safe. Last thing I want is medicine troubles on the other end of the US.
       ...speaking of vision loss, for me it’s a blessing disguise really. Im not slamming my foot on the pretend "Brake peddle" from the passenger seat when my husband drives! Just kidding... sorta shocked 
        Emma is in our prayers tonight. I hate hearing about the little ones sick. It really IS unfair when they get sick. Bless her heart She is in our Prayers.
  Dear Melissa,
        Hey! *hugg* Well, no spinning so much really today. The majority of the hard stuff is done. All that is left is the small details and when I voiced my anxieties to my husband he stepped up to the plate! Gosh I really am lucky.
      Yes, as a matter of fact, I do have a pain psychologist. That is how I found Healing Well in the first place. Toward the end of our time together she suggested I join an online support group (cant do in person, im in a small town). First one was Scoliosis forum, but... I needed one more well rounded and moderated better. Then I switched to Healing Well and have been here ever since. My mental health is evaluated regularly thou, because I am young and on meds. But, aside from that she assures me I can call or email her anytime I need her.
       Thank you all so much for your prayers, ideas, help, suggestions!!! It means a great deal to me. I am so greatful and blessed to have you All in my life.
*warm Huggs*



Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood



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