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!
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.
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.
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.
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.
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!
It is good to hear from you! I am glad to see you again, and I hope we have more chances to chatt! *hugg*
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!
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.
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!
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