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Date Joined Jun 2009
Total Posts : 2787
Posted 6/16/2010 11:28 PM (GMT -6)
I will try hard to make this short, so forgive me if it ends up too long.......
You know, I remember she gave me very stern eye. Said very clearly to go slow. Not hurt myself. She is normally very gentle with me. She told me she was worried. That a trip like this would be hard. ....in the end she was right, but I would do it again in a heart beat!
The trip out was hard. Its very painful to sit. The deep ache in hips. The feeling like little men are pulling my hipps to the ground. Gosh. And I have to do this for an entire day? ....maybe it would be a good time to sketch out jewelry ideas. There are so many people in the air port and plane! So many types of jewelry would look wonderful on them. Clean, traditional style for the lady with the sharp facial features in the clean cut power suit. A whimisical multi strand with flowers? No stars! Maybe have stars tossed in randomly with delicate chains for the young lady so intrested in her telephone. And for the very angry woman in the front who is so upset the plane was 15 mins late... maybe a big bright, happy sunflower pendant *giggle*. I spent most of both flights out there sketching and napping.
So what is the deal with air ports anyway? Was I like that once? Did I rush as though I had to be at my destination yesterday? Did I elbow my way to the front of lines? Snicker at the child who is tired and crying? Snubb my nose at the elderly & disabled? I surly hope not..... and for the record. If all those people had to be there yesterday, then perhaps they should have left yesterday.
Finally! We reach Florida! It was so wonderful to see his family again. Though there were a few shocked looks, they were quickly replaced with smiles and oh so welcome huggs! It was a long and painful journey though and I needed to get to some heat and rest quickly. I couldnt really socialize the first day there.
The following days were filled with so much! Family dinners that lasted hours! And always made my heart feel so full and welcome. Catching up with relative of my husbands that we hadnt heard from in years. Visiting with his father and step mother. Spending time with his mother and her family. It was all so nice. But, I didn’t pace myself. I didn’t speak up when I was being pushed to do to much. Too many people saw the bad stuff and it was embarrassing. They had to see my pain even though I tried very hard to walk normal and gather energy that I just didn’t have. It hurt a lot for so many people to see me in pain. In those moments I didn’t want it to be a part of me, especially then. But it was and all I could do was apologize, Sit, take medicine and drink protein. Sit for 40mins and try to not feel guilty. *sigh* One nice thing about
those quiet moments thou? Florida is so beautiful. The forests are alive with animals and brids. A moment alone is like a peacefull visit to lush gardens with birds chirping away. The best place to gather yourself and recover in my opinion.
Most of my nights were spent awake. I averaged 3 or so hours per night. I know, not much different than my 4hrs. Still it was another factor that tired me out easily each day. Nights in Florida as so different than New Mexico. It is warm out ther long after the sun goes down. Crickets singing out all night. The smell of the air is heavy and thick with flowers all day and night. Its very beautiful there.
At the end of our first week in Florida we had a large birthday party for my daughters and mother in law. I worked through the night on friday decorating and setting up tables. The next day was wonderful and everyone enjoyed themselves. All of my husbands family was there as well as his step sisters and their famlilies. It touched me greatly because there has been obvious tensions between my mother in law and my step mother in law. It felt so good to see the two famlies finally become one. To see 20yrs of anger and resentment left behind for one beautiful day of celebration. A lot of strong bonds were made that day. A feeling of togetherness that I will cherish forever.
The children were all spoiled to no end with party favors, candy and toys! The boys terrorized the girls with water gunns and the girls terrorized the boys with cannon balls in the pool! The parents all shared funny, sad, happy parenting tales. While great great grandfater told of the old days during world war II (he is 92yrs old). What I will never forget is the smiles on the faces of EVERYONE there. I was deeply touched.
When the day was done. The children and parents a like were exhausted and well fed. Everyone slowly left. Then I got to work cleaning up from it all. I had to do it in small spurts by that point because I was having a hard time focusing and keeping my food down from the pain. But, it eventually all came down and the dishes washed. I kissed my little bees goodnight and let them have their pajama jammy jam with their Grandma. Then I headed back to the hotel and slept in the next morning.
The next day I had the most wonderful experience of my life. I met Pete and his wife Lisa!! Oh gosh! It was so good to be with someone who knows. Who truly understands. I felt so at ease at his home. It was like meeting someone who was always there. A constant presence in your life, but in person. Someone waiting with
open arms and an understanding heart. I will keep those moments with me for the rest of my life.
That Monday can only be described as a "crash and burn". I just couldn’t make my body go. The pain had been pretty hard to control for a few days before that. But by Monday I was toast. The new pain I was feeling before I left New Mexico was back with a vengence. Only this time it was constant, unrelenting and came with a whole host of problems. Most notably making it nearly impossible to walk without looking funny. So I spent that day cleaning up and washing clothes and getting everything ready for Disney World. I was pretty darn embarrassed everyone saw me like that. They kept asking constantly if I was okay. Kept asking if I needed to lay down or if there was something they could do to help. I didn’t want anyone to see me like that, but what could I do? No where to hide. Nothing I could do. Then at one point they began asking about
my health. If out of exhaustion or just plain unable to lie, I do not know. So, David and I answered all their questions the best we could. They were shocked to say the least. Then I went outside for some alone time (and to cry) and when I came back inside they were washing my laundry for me, cooking me dinner and had set up my laptop and sternly told me to sit and enjoy my caffiene releapse with an ice cold soda pop. ...very weird. But I couldn’t deny that I was greatful for the help and the rest.
Disney (tuesday) was wonderful but came with its own challenges aswell. Physically I wasn’t able to do much by that point. But the only people with us were people who fully knew what was going on with me and I wasn’t treated differently. Just picked on for being so short (which I teased them mercilessly for being short just three years ago). It was great. They just stopped to take breaks frequently and let me enjoy myself and take lots of video and pictures. It was a wonderful time and I am so greatful I got to be a part of it!
Then wednesday was another "crash and burn". I just couldn’t make my body go. By this time I am super frustraited with my body.... I would end up spending the rest of my week in the hotel room wishing I could make my body work. But what ended up happening was quite a surprise. My husbands father and step mother showed up with home made soup in a crock pot, beads from a local bead shoppe and sweet tart candy (my all time favorite). We hung out for quite some time and spent time together at the hotel. It was so fun to be with them and have supper together. I was so greatful that I decided that perhaps it wasn’t so bad having my body not work. Afterall, it gave the 6 of us some much needed alone time with each other, instead of always being in large groups with the rest of the family members!
The last 2 days of our trip brought us all a stomach virus from the locals. It was hard. Especially on the children. But the last person vomited the day before we left in the afternoon. From that point on we all slowly but surley got some real food into our systems. My father in law helped get the rental car clean, I finished the packing and cleaning. My father in law took the packages that needed to be mailed while I got everyone showered and ready for our depature the next morning. Little did we know that at that very moment across town the rest of the family was being hit hard by the stomach flu aswell. I hear that they all have recovered and are doing good now.
The trip home was rather uneventful and all of us spent the majority of our time sleeping on the plane. Once we were home we all went to our rooms and went fast asleep. We woke sometime around 6pm, got up and went to the store to re stock the household food and goods. I then spent the rest of the night and the next day cleaning up the house and unpacking.
All in all it was a wonderful trip. Full of loving memories I will cherish always. But, I really should have listened when my spine specialist told me to go slow. I should have heard the warning in her voice when she told me I need to pace myself. ..but then again, I wouldn’t be "me" if I wasn’t stubborn!
I managed to capture some really increadible moments with my cameras these last few weeks. My husband is trying hard to load them on his new lap top. Though I think he might listen to me soon and load it all up on little Rosies computer.... since her computer already has all the programs on it. ...he has to be a man for a while and try it his way before he will listen to me! In any case, once I get all the still shots gathered I will post pics of our trip and all the fun we had for you guys to see.
Now on to a more serious subject.... The pain is still increadibly high. Its been like this for over a week now. Inbetween my shoulders where my secondary dextroscoliosis is at, there is a deep "flu" like throbbing with a lot of tenderness. Then the very bottom of my primary levoscoliosis is painful to the touch, hot, tender,with a hard "ball" like area. The size of the area has deminished somewhat. It also has the same deep "flu" like feeling. Not very welcome additions to my regular pain to say the least. I will probably give it a few more days to see if it calms down, but reguardless of "when" I see my spine specialist I do need to let them know that the "New pain" has become daily now.
Just some random thoughts here, but.... I know I will be in pain the rest of my life. I really do understand that fully and do not mistake that I will never be pain free. I know my spine will always be deformed. And it is okay. I am perfectly OK with that. but... What will happen to me if it continues to progress at this rate for the next year? 2 years?
I know, I know. The spine specialists will know all the answers when I see them next... just frustraited with my spinal deformity I guess. Tired of the relentless progression and all the limitations that come with it. The progression was supposed to slow down by now. Not speed up.
...Dont get me wrong, I make these curves look gooood! Just wish they wernt in such a hurry
I am more than a little worried about
my future and my spine at this point.
And now that I have written a short novel I will end this here. Also, I am sorry if I upset anyone by having a non pain related post up. I just wanted to share how my trip was
*MANY warm huggs*
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator
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Date Joined Apr 2010
Total Posts : 2261
Posted 6/16/2010 11:54 PM (GMT -6)
Wow Dani It sounds like you and your family had a great vacation. I'm sorry you've got extra pain to go with your normal pain. Bless your heart.
Please take care of yourself. I want to write more, but I'm not able to right now. I'll try to write more later today if I can.
love and hugs
Dx: ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety
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Date Joined Aug 2008
Total Posts : 3193
Posted 6/17/2010 12:02 AM (GMT -6)
Thanks for sharing your journey w/ us.... I'm so glad you had so many wonderful parts of your trip.... I'm sorry for the hard parts, too. It's so difficult to learn to pace ourselves, especially when life keeps going on and there's so much to want to be a part of. I don't know if anyone ever gets it right.
I really encourage you to share everything w/ your docs, not holding back anything. When do next see the spine specialist? (Sorry if you already said that, my brain's not working too well right now). Anyway, be really upfront about
how your pain has worsened.
Thanks again for sharing... and I'm glad you got home safely.. Rest up and take care of yourself... --Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency
Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); 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...
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Date Joined May 2010
Total Posts : 594
Posted 6/17/2010 9:17 AM (GMT -6)
Dani, thank you for sharing....it was wonderful, you write beautifully! Don't worry about
what anyone thinks about
it being a non-pain related post!!! First off there was a lot of pain in it and secondly, many of us enjoyed it. I am so sorry you are hurting so badly, but like I said before, you were very strong and very brave to even take that on! I feel so wimpy for the things I gave up because I was afraid of hurting! I understand the embarrassment, I can't count how many times I have asked my husband to slow down, when we are walking, so I don't look so stupid! He doesn't do it intentionally, he just walks fast! Anyway, I think you should go to the doc sooner, rather then later....don't put it off and hurt for longer and worry more!! Take care of you! Thanks again for sharing!
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Pete trips again!
Date Joined Nov 2006
Total Posts : 1899
Posted 6/17/2010 10:52 AM (GMT -6)
Dani, SO sorry your hurting so bad! I wish there was something i could do to help you! I know that the trip really did you in but like I said on my other post, I know you did it for your Family!!! I'm sure they realize the sacrifices you made for them! You are a wonderful Mom and a super friend! I just wish we could have kept you a little longer! Next year, plan on staying overnight w/ us at least one night and maybe more??? I love your girls so much and had such a great time w/ them as did Rose, Hanna, Lilly, Big Boy (El Dorado), Ponyboy & Angie!!!!!! I didn't evan get to cook anything for you to show off my skills in the kitchen! Next year for sure!! My only sugestion is you should come in the spring when the girls are on spring break maybe,. It's so much nicer here in the spring w/o the brutal heat! I'm glad you are getting settled in again. Please don't over do it cleaning and everything else! It all can wait till you are feeling a little better! All for now, I have to write a post about
myself and what my two docs said about
Love You and please tell your Hubby thanks for bringing Y'all to see us!!! It was priceless!
When I was young & stupid I broke almost every bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men, both are in the Navy. I'm so proud!
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Date Joined Feb 2010
Total Posts : 914
Posted 6/17/2010 11:26 AM (GMT -6)
Hey Sweet Dani , It sounds like you had a great time and faced some challenges too , but did what you had to do like your usual brave , beautiful self . Its so wonderful you got to see David's family and they you , and Disney and visiting Pete too !! No wonder your exhausted !! You did a great job Dani Girl , I'm very proud of you , its wonderful to have you back and its always great to read your posts my dear whatever they are about
. Check your e-mail I sent you a photo of my grandson . Love You and Welcome Back Mikel
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Date Joined Oct 2008
Total Posts : 2022
Posted 6/17/2010 5:08 PM (GMT -6)
What a beautiful time you had. I am so sorry you had to suffer though. But I know you are a strong woman and you could get thru it. You are an inspiration. I know you will have those memories in your heart for a lifetime. Now take care of yourself, perhaps a foot soak like i did last night or a relaxing rub by your hubby. Rest up my love. i am happy to have you back.
Chronic, severe and continuous bilateral temporal headaches since April 2000.
Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!Have tried all the opiods and pain killers and nothing helps.
Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath, ativan and flexeril prn.
Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
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Date Joined Mar 2008
Total Posts : 2976
Posted 6/18/2010 12:45 PM (GMT -6)
Thanks for sharing! Despite the rough periods, it sounds like you had a fantastic time! You are a real sport! I can't imagine doing all that you did while being in so much pain. You have so much strength & drive. I really admire that.
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