How are you doing DANI??

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tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 9/19/2010 2:00 PM (GMT -6)   
Dear Dani
You always give so much of yourself to everyone. You are always here everyday encouraging everyone to continue the fight, to not give up. Never ever talking about yourself. You are such a wonderful person, a courageous woman!!! So today I want you to tell us how you are doing? how you are coping and getting along... how are your pain levels? spill your heart out honey cause we are here for you and we love you tons!!!!
 
Hugs and love sent your way!! wink

Post Edited (tmjpain) : 9/20/2010 10:30:18 AM (GMT-6)


flower123
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Date Joined Apr 2009
Total Posts : 856
   Posted 9/19/2010 5:36 PM (GMT -6)   
GReat post! Dani, how are you feeling?

Thinking of you and lots of hugs,

Flower

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3089
   Posted 9/19/2010 7:57 PM (GMT -6)   
((((((Dani)))))))). I hope you are doing alright & managing with all the back to school craziness!

hugs,
Skeye

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 9/20/2010 11:28 AM (GMT -6)   
  
 
 
      BUMP

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 9/20/2010 1:29 PM (GMT -6)   
    Dani is a total Goddess , truly giving , cares for everyone and faces her challenges with true courage .She is the person I've learned the most from here at HW , because she reveals herself without resevation to help , a most special and wonderful lady without any doubt ! Love You Dani !!!!  your friend always Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Staples out , saw the surgeon he says I'm healing really well , I go back in 2 months . Until then its physical therapy galore !!

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/20/2010 2:07 PM (GMT -6)   
I second everything you said Mikel. You said it so perfectly!!
 
Love
SUZANE

One day at a time!!

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 9/20/2010 6:51 PM (GMT -6)   
Bump again

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/20/2010 8:13 PM (GMT -6)   
I would say pretty much all of us feel the same! wink

Hope you are doing well.

SE wink

JulietteSuzanne
Regular Member


Date Joined Dec 2007
Total Posts : 104
   Posted 9/21/2010 10:01 AM (GMT -6)   
Dani is indeed a Diva!
yeah

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 9/21/2010 11:46 AM (GMT -6)   
Oh my goodness you guys. Warm my heart to no end. How am I doing? ..Gosh.. where to start?

    Lets see... My sleep is becoming rather difficult. I am still averaging 3-4 hours per night. The hard part is that I am waking more times than I can count. The area between my shoulder that normally itches like crazy now has an intense "pull" sensation. Like something is pulling the area down to my lungs some how. My hips are sore of course... it is just the "flu" sensation that I normally feel when sitting / sleeping is more intense, lasting all day and has been going since last Wednesday. At first it was rather uncomfortable, but as the sleeplessness became more frequent the pain itself has become part of the "sleepless daze". It isn't quite so alarming now as it just feels exhausting. The swelling in my back is rather frustrating but there is little I can do. The rotation of my hips towards to rear seems to have slowed down, but of course what I can "see" is a far cry from what we see on an X-ray. I have been waking up to areas of my body being numb. My heel, outer part of my thigh, bottom, calf, right flank. The areas will stay numb for literally 2-3 days. When it happened the first few times I thought it was odd, but I never thought to mention it to my doctors. At this point, I think I have to mention it when I see them next. Should probably mention the "Ice sensations" in my neck and groin while I am at it.

     My vision is getting worse again. There are more "pepper" spots and the outer edges of everything is "cloudy". My synthetic lense is the one making everything look "Cloudy" and it does bother me somewhat. I cannot afford to see the surgeon. He already warned me that I needed my lenses aspirated. The tissue of my eyes are softening while the cells are stripping. He was/is concerned about my retina. I literally cannot afford for anything new to be wrong with my synthetic eye, my biggest fear of course is needing a new lens or more surgeries.

   Soon I have to see my specialists. I am dreading this because there was much debate over neurosurgeon vs. orthopedic surgeon. Neither of which I can afford to see. What exactly happens when you get to the point where you have no choice but to consult a surgeon and you cannot pay for the needed surgical help? I shudder at the thought. I seriously doubt that they are anything like the oral surgeon, technician and dentist who all charged me flat "cost of materials" for my full dental reconstruction. I seriously doubt any surgeon in the world would do the same for my spine. What will happen if I cannot pay and things continue to get worse at this same rate? *shiver*

     Oh and the most pressing money issue. We need to find a new house. ASAP. This one is being sold as an investment property. We have to be out of here as soon as we are able. My husband and I have no clue what to do. So far, I am back to making even the smallest things by hand. IE tortillas, breads, maintenance, mending, yard work. I became lazy over the last 3 months or so buying things retail instead of making because of the pain increases. My efforts have been able to save a little bit, but I will need to keep it up so we can move. It is just that even small things like making bread are hard on the back. My biggest fear is where we will go and what we can afford. My husband and I have long dreamed of a small track of land and a pre fabricated cabin deeper into the mountain. I have no time for such dreams just yet. I have to see how much I can save between now and February / March 2011. Then we will see what we can afford.

     My jewelry sales.. I did sell another set. 100.00. Not via the internet, this sale was a "special request". I was told a little bit about the mother of 4 and what her likes/interests where. I made a few sketches, we decided on the 5th sketch and it was sold before it was made. As far as the rest of "officially selling sets" I have everything ready. Many set made and ready to be sold. I gave myself a new deadline of October 30th. I hope it turns out okay. If not, then I really will kick myself this time!

     I see this is getting long.. but in all fairness you guys asked...

     Oh and time for Winter cleaning. I have to re decorate and re do everything to ready for Fall / Winter season. Everything is gone through. Bookshelves, pots and pans, toys, closets, clearing the property, donations. All of it. I started a few days ago on the girls rooms. I only have a few weeks left to get it done. It has to be done before the week of Halloween. Once Halloween is over (literally the very next day) I spend a few day decorating the house for Thanksgiving / Christmas and begin making candy. It takes me many weeks to make all the chocolate and I literally spend 5 to 10 hours per day making and freezing all manner of chocolates, candies and treats. It takes me about a month. Big group order for company Christmas party, both classrooms parties and staff of school. Smaller "sample" baskets to various neighbors / friends. Large family bags for 10-15 families. Large family bags for all the relatives in Florida about 5. This year I am going to let Tessa document the process. People are constantly amazed and many others are curious about the process. So, this year, I am going to give my daughter and husband cameras. Maybe I will include snap shot in the "greetings cards".

     The girls are doing great in school. They have their first report cards coming up and I am very proud of them. The one thing that is troubling right now is that neither of them want to continue ballet during school. They told me they are too tired. They want to spend Wednesday afternoons with mom. I do not feel like I should push them. They came to me with this and told me quite plainly they didn't want to continue during school. Soon chorus will start and if they feel the same about chorus, as they do ballet, then that is okay too. First it was Little Rose. We were in the car and she had said "I don't like ballet much more now." I thought it was an odd statement so I said you don't like it at all? She said "I just like school momma.". Later the next week Tess said she "Just like being home helping you on Wednesdays mom.". I asked about chorus and she "I don't know". So, I will just go with the flow and if they want to pick up their activities later in the year then that is fine. I just do not feel I should pressure them on this one. Though in all honesty I will greatly miss their Christmas performances in Chorus.. I hope they will want to pick it back up for the Fall season. But! If not, that is okay.

     Now that I have written a short novel.. I hope this has helped to answer how I am doing. I am tired. My body feels heavy, like I am weighed down by a wet blanket. Other than that, I am pressing forward and making the most of each day.

Lots of Love
     dani


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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Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/21/2010 11:50 AM (GMT -6)   
 
   Ok!...Pete!.....I mean Dani! smilewinkgrin
 
   It's going to take me a week to read through all of this! wink
 
         SE wink

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 9/21/2010 12:12 PM (GMT -6)   
Oh Sweet Dani , you never cease to amaze me , all the challenges you face , still you persevere .Your strength of character is incredible to me .Surgeons volounteer their services every day , brilliant surgeons do this , so do not give up hoping .I can't beleive God would create a wonderful person like you , and not make things work out . I'm so sorry your having such difficulty though , no one could deserve it less .Your my hero Dani , you've taught me so much , I beleive in you always , things just have to work out for you , I won't beleive otherwise .Blessings to David , Tessa and Rosie , keep beleiving Sweetheart , things will work out !!!! Love You Lots Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Staples out , saw the surgeon he says I'm healing really well , I go back in 2 months . Until then its physical therapy galore !!

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/21/2010 1:00 PM (GMT -6)   

 

      OK!.....I just read your post, and I'm umbarrassed to even mention what my health problems are next to your's. wink

   I must say...you are quite the woman! wink

       WOW! I really don't see how you do it all, and keep such composure to boot!

         You are in a class all by yourself!

       I have been looking at making bread and baking it on my biggreenegg. Maybe you could slip me an easy reciepe for a first    timer.

      Take care, and again, I'm impressed!

        SE wink


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/21/2010 5:01 PM (GMT -6)   
Dani, I don't know how you do it? How do you find the strength to get all that done in a day? With all your physical problems, your pain? do you ever cry? feel like quitting?? You amaze me!! You are an inspiration to all of us!! If we lived closer, I would love to treat you to a day for YOU, a spa day or whatever you would like I would do it for you!!!

It's obvious that God is with you!!!!

Love you girl!!
SUZANE

One day at a time!!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 9/21/2010 5:21 PM (GMT -6)   
Dani,
I sure hope your feeling a little bit better soon....
I'm with you on the doctors pushing surgery you can't afford, with me it's procedures
I can't afford anymore and the doctor just not listening to my "NO"...seems like
someone could've warned us that as soon as we turned ---yrs old our body's would
just fall apart for no apparent reason...then I would've said to heck with that...
If cyber chocolate would help I'd send ya a whole big box of your favorites...
HUGZ
(((((((((((((((((((((((((((((((Dani)))))))))))))))))))))))))))))))))))
Prayers for ya...

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 9/22/2010 1:07 PM (GMT -6)   
 
     Thank you so much Mikel. I think of you often while I am filing pearls the last few days. I try hard to remain hopeful, it is just that these types of surgeries reach upwards of 200K +. I am not sure what I can do. I have done everything that has been asked of me to the very best of my ability. I am just plain out of options. Quite frankly the "genetic panel" broke us financially. 4,500 that the insurance company refuses to pay for. They decided that genetic panels are not needed to diagnose "Idiopathic". It is frustrating because I know there are at least 2 more tests my doctors would like to run to be absolutely sure, but the cost of each is 3,000 - 5,500.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~    

    

     Thanks so much Michael. I am not sure what a "biggreenegg" is but here is an easy one for every day use. The nice part is that when you are done, put it in refrigerator and the home made breads last 3 to 4 weeks. Let me know if you want tortilla recipe they last a month or more.

  2 & 1/4 cup Milk
  3 tablespoon Butter (Margarine okay too)
  5 & 3/4 - 6 & 1/4 cup Flour
  2 packages active Yeast
  2 tablespoon Sugar
  2 tablespoon  Salt

     Heat Milk and Butter. Mix 3 cups Flour, Yeast, Sugar, Salt and warmed Milk. Knead for a long time, slowly add in last of flour until is firm. Place dough ball in a greased bowl. Turn the ball around in it till ball is has thin layer of grease too. Sit it in a warm place to rise....bout an hour and half. Then cut it in half. Grease two bread pans, again turn once for thin layer of grease on bread too, let them rise again for an hour. Bake at 375 F for 10-15 mins then lower the heat to 350 F and cook for 30-45 mins.

**Tip, if bread is turning out too "hard" just take a long pan and add 2 - 3 cups of water and place it on rack below the bread in the oven.

p.s. you can add a cup of anything to this recipe. Can even add package of dry onion soup mix for Italian meals.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

   Gosh Suzanne. It is just that I do not have family. I have no one to go to for help. I have little ones. With my husband on 12 hr night shift he can't help either. I have to keep going. Most times I take my stool with me while I am cleaning or doing labor tasks. I have it sit a lot. Also, if things don't get done in the time slot, then they become a bigger problem the next day for me to do. It helps to have everything organized and easy to manage. I can do a little every day and still have things look nice.

     Yes, I do want to give up sometimes. I found myself crying away last week through my chores. It is a struggle. It is overwhelming at times. What can I do? I have no one to go to for help. It is what it is. My pain is going to continue to get worse. My spine is going to continue to progress and make mobility difficult at best. Loving and caring for my family makes everything feel a little bit better. Story time at the end of the day is like reaching the finish line of a long marathon.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

   Thanks Chart. I think what they are trying to push for is because something is happening with my blood flow. My spinal cord is being compromised. My mobility is being slowly stripped away. There just isn't anything I can do. I hear that these things are important. I know why they ask at the beginning of each visit if I have "lost bladder or bowel function yet"... I do "get it", I do understand it is important. It is just that I have no money for it. Even with my dental re construction, for example. Just the cost of materials took me 3 months to save up for. They all donated some materials, all facilities and time. The lab donated everything, even the shading specialists. Still it nearly broke us. I know I am getting really bad. I just don't have any option. They all know I do everything by hand. They say things like "soon you will have no choice" all I can think is *geeze lady I don't have any choice now, forget choice in the future* These doctors have so much at their disposal, but the cost is so tremendous that still people suffer daily because they cannot afford access to any of these resources. Its a shame.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

     Thanks Pam *hugg* I was so bummed out I had to miss most of chat night last week. It is my "get away" with people who "know". It is the one time, each week I can finally just be "me" and I do not have to worry about hiding any part of myself. I ran into my daughter principal the other day and when I went to leave after she introduced me to the new assistant principal I heard her sniffling. I look back and she was crying. I gave her another big hugg. ... All the struggles out in the world, all the obstacles just seem to melt away at chat night. I sure do hope I can make it this week. I need some "me time" in the worst way.

 

*warm hugg*
        dani


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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tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/22/2010 2:54 PM (GMT -6)   
Dear dani
You are a sweet angel from up above. I hope there was no misunderstanding in my comments I made. I understand you have a family to look after and that your husband works the night shift. And you must do what is needed to look after your family. You are strong, brave and courageous. I believe we all are as we carry our pain each day and get to the next day. But I ask myself if I had small children to look after and have this horrible pain, how would I do it?? Like you say, you do what you have to do!! It is an honour to have you as my friend Dani. In regards to your surgeries etc. that are so much money that you cannot afford them, well I wish you lived here in Ontario because if you would need them then they get done and you don't worry about money, they are paid for!! I feel so terrible that it may be something that could help you but it is too expensive. Just not fair!! Do any doctors make any exceptions to any cases. For instance here you have to pay for any orthodontic work. Well I have been followed for a long time trying several mouthguards to help my pain to no avail and braces twice, I have them now, and both of those specialists said I did not have to pay a cent. Well you can imagine how overwhelmed my husband and I both were. Both in tears and giving hugs and not being able to expresss how thankful we were. I wish it would not cost you anything for any further tests or surgeries you might need and that would wipe away some of your worries for your future. My heart goes out to you hon!! It is not fair how the health care system is run in the states.
Please know how much I love you and that I think about you often!!!
 
Hugs

SUZANE

One day at a time!!

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/22/2010 5:17 PM (GMT -6)   
Thank you Dani! I will try the bread this weekend, if I don't have to work. wink

It should be fun to try, and I have always wanted to bake bread. I remember my Grandmother doing this quite often, and she always had homemade Apricot jam to go with it.

Take care,

SE wink

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 9/23/2010 9:53 AM (GMT -6)   
Dani,

You are quite an amazing woman. I see a lot of myself in you. I do most everything by hand also, since it saves so much money. We too can't afford much of what I need for life to be more comfortable, and there are so many who look at me and ask why do I do this when it hurts. Well, because there are those of us who have to do this, and we love our families and will keep going until there is no more of us left. I wonder do you ever feel as I do, fear that day when there is no way you can do something anymore?

My household chores are the same, I take a stool or have a chair with me wherever I go, simply because if I don't and have to sit on the floor, it may be a long time before I get up again. Even with the flu last week, I still had to clean and cook some until I could not keep it from my fiance and sons any longer and they took over. It still makes me feel badly to have them help. Hopefully seeing their help as the gift it is will happen soon.

Keep on going with your jewelry, I know you can do it! I bet it is beautiful too. Meet your goal if you can, but try to be less hard on yourself. Good luck with the search for a home, I will pray that you find what you have been looking for. As for making your own bread, have you ever tried a bread maker to save you the back pain? I know you do not have money for one, but our local church has quite an amazing array of household things. They call it New Digs. People give to help those in need. Maybe a local church or organization has something close to that in your area, and with your conditions, they may be able to help to get you a bread maker? If you are interested, I will also keep my eyes and ears open for one for you.

I wish there was some way I could help you. You help all of us on here so much that words seem to be woefully inadequate. As many have said, you are an inspiration. You face every day with courage, optimism, and hope. Hang in there!

As for surgeons, have you discussed with any of the offices about your financial situation? Many doctors, surgeons, and hospital facilities have funds and special programs to help. I encourage you to talk to the office about all of it, your financial situation, your numbness, your struggles. Asking for help is not a bad thing. I don't know if you are anything like I am, but that is the hardest thing for me to do. Reaching out and asking someone to help me is impossible some days, and it has taken me a long time to get past that. You deserve the best of medical care simply for the way you care for all of us and your family, and I wish we could get it for you!

Now I am crying and I have written a novel! I hope you are having a good day dear. Thank you for all you do for all of us!

Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw


Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, adhesions, and a kidney stone! Wait, future medial transcriptionist I must say ureteral calculus!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 9/24/2010 11:25 AM (GMT -6)   
Soft healing hugz for you Dani...
caring about you...
(((((((((((((((((((((((((Dani))))))))))))))))))))))))))
**********************************************
* 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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