~I've painted myself into a corner

 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*

       dani

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. 

Loretta (9yrschronicpain)

  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!     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!!*

          dani

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

Loretta

    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.

Pete!

     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  

        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*

       dani