Ever since my surgery got denied, it's been really rough. I have been more depressed lately (I can tell, as can Brian and my family), and the pain has been really bad. My breakthrough pain is really bad, and the doctor had to up my meds again. I just don't know how much more I can take.
At the urging of Brian and my family, I found an RSD message board that has a good amount of traffic on it, so I am able to get some decent answers to many questions I have. So many of my questions my doctor can't answer, which doesn't help me. It often leaves me walking the trail, happening upon many forks in the road, and not knowing which one to take.
One of those forks in the road is about the Spinal Cord Stimulator. When I had my trial done (which went wonderfully), one of the questions my doctor could not answer was about pregnancy. He said he had no data, there were no trials, regarding Spinal Cord Stimulators and pregnancy. And while he said I could give birth, he didn't know about epidurals, C-sections, and how the SCS would affect all of that.
Which left me at a great impass. Brian and I know we want to have a family- I have dreamed about being a mom for so long, I refuse to give it up because of some stupid disease. But with no data, no info, how do I know if I am making the right decision? At the urging of everyone, especially after the positive trial, I decided to pursue the SCS, despite some misgivings I had in the back of my mind. I really thought that this was the best course of option.
Now that I am on this message board, though, I am reconsidering it and reconsidering it more and more. It's been denied once, so we would have to spend the next year fighting it, with no guarantee that I would be granted it. And the research I am doing...well, it's not pleasing me very much. From what I can find out, the SCS may not be the best option. Apparently, when the trial was more than a year before the permanent implant, the likelihood of the permanent implant working as well as the trial implant did diminishes greatly- they don't know why, they just know that it does. And I am reading story after story of the SCS causing RSD to spread to other limbs, making the RSD I have now worse, and just bad things in general- including things from my regular pain specialist. The worst, though, is what I have heard about pregnancy.
Apparently, with pregnancy and SCS, the news is just not good all around. Since my doctor couldn't tell me anything, I asked around to see what others had been told by their doctors. Some patients said (more than one) that their doctors told them during pregnancy, the SCS must be turned off, because of the risk of pre-term labor. Others have told me that I would not be able to have an epidural, which means either doing it without drugs (which I won't be able to do) or if I have to have a C-section for some reason, I would have to be put under general anesthesia. So I have now missed the birth of my child because of an implant that I haven't been able to use for 9 months...something just doesn't seem right here.
So I did a bit more investigating. I had heard rumblings through different articles and such that getting pregnant can put RSD into remission, but I had not found anything conclusive or found any woman who this had happened to. Lo and behold, on the message board, one of the ladies just announced that she is pregnant, and in remission- for the second time! While this does not happen to all women with RSD- some can have their RSD become worse- it seems to happen to the majority of women, from what I can tell. Apparently, it's an auto-immune response, combined with the hormonal changes.
This has made me wonder- okay, now I could, most likely, have children with the epidural and not miss it. But what about the time period when I am not pregnant? What if the remission doesn't happen for me? I can't take the oral pain meds I am on! No, but I CAN take the pain meds through the patch- which I am using right now! Apparently, it is safe to use during pregnancy, as there are a couple of women on the board who have used it during.
Okay, that solves the remission questions. What about the other times? Brian can't keep me pregnant forever, and while the patch would be a short term solution, eventually I would like to be pain free at some point in my life. I had heard of the Ketamine imfusions (you may have too, especially the ketamine comas over in Germany, where they put people into coma for about a week to try and reset the CNS). The coma is not approved for use here in the US, but the imfusion (about 6 hours long) is. It's done in Philly, at Drexel University- not far from where I am. My doctor had mentioned it as an option, and said she would write me a referral if that is what I wanted.
But there are drawbacks, too. My doctor mentioned she had another patient on the imfusions, and while they worked, during the infusions patients experience terrible side effects. My doctor said that she had heard of hallucinations- bad ones. Ones where you are being raped, tortured, killed. But the trade off is being pain free- for a long while. I have heard anywhere from 9 months to two years mentioned. I have to do more research, as this has only recently become a distant possible option.
But where do I draw the line? When do I say, this side effect is better than that side effect? Is the trade off worth it? Brian and I talked about it, and he said he would support me, but that he didn't know if he could be there for 6 hours while I had horrible hallucinations- if he had to, he would tough it out, but he said he couldn't stand to see me go through that. When do I say enough is enough?
I just don't know what to do. I never thought I would have to make decisions like these at 23- decide between missing the birth of my child or hallucinate horrible happenings. what do I do? I have prayed and prayed, and I know there are so many others out there praying for me now (I can't even begin to count the number of prayer chains I am on). I will continue praying, and I know that God will see Brian and I through this. I just wish, for once, I could catch a break from all of this. Maybe, God, it's not too much to ask for a sign of what decision to make? For a little bit of comfort, and alot of healing? I just don't know what to do, and I need some help and guidance.
Friday, September 25, 2009
Thursday, September 17, 2009
Flowers!
So, I just realized, I never told this bloggy-blog about my meeting with the florist, and how ah-mazing it went! Guess what this post is going to be about?
We are using Belak Flowers, in Wilmington, DE. Located on Philadelphia Pike, Barb (the owner) is a member at our church. I have seen her work before, and I can't gush enough over it. Fabulous, that's what it is. One of the girls on the Knot, Steph, used her as well, and absolutely loved her.
So we went and met with her- and of course, per the usual Brittany, I had no idea what I wanted. Does this surprise anyone? We sat with her for 3 hours. 3 hours of flowers, trying to figure out what I wanted, what looked the best, etc etc. And Barb was amazing, so accommodating, and helped steer me towards what I wanted.
During the appointment, we kept going through books of bouquets, trying to figure out a starting point. I knew I did not want Calla Lilies (soooooo overdone at weddings), and I didn't really want blue flowers- while I have a blue dress (or at least a blue train), blue flowers are so few, which would have left us with only a few choices. And really, I am not a fan of hydrangeas.
I told Barb I definitely wanted Stephanotis- it's one of my favorite flowers, if not the most favorite. We decided early on to use the stephanotis, but reserve it only for Brian and I. I wanted something to designate our status, and what is better than my favorite flower? In one of the books she has, she had this gorgeous bouquet that I kept going back to. Made up of Freesia, Gardenia, and Green Lisianthus, with other white filler flowers, it was so different, so unique, yet so gorgeous and simple. She noticed, and asked me about it. She assured me that it would look fine against my dress, even with the green. I had also seen a bouquet with my other favorite flower- Stargazer Lilies. I started thinking out loud.
We ended up replacing the gardenia with stargazer lilies, the freesia (which is a branch flower) with green berries, and adding white daisies with green center. We kept the green lisianthus. So, my bouquet is Stargazer lilies, white daisies, green lisianthus, stephanotis with blue head pins, white filler, and baby's breath, my third favorite flower. I will have a white wrap, with blue crisscrossing ribbons.
I am in love with it. I never thought I would be so happy about flowers, but I really think these are going to turn out wonderful- and when you add in the fact that pink is my favorite color and green is Brian's favorite color, well, that just makes it even more perfect. Brian's boutonniere will be several stephanotis flowers, with blue heads and a blue wrap.
We based everyone else's flowers on mine. The girls will carry smaller bouquets of stargazer lilies, white gerbera daisies (my final favorite flower- love how whimsical they are!), white filler, and we also added blue delphinium (the only blue flower I sort of liked). They will have blue wraps with white crisscrossing ribbons. The groomsmen will wear a daisy/blue delphinium bout, and the Best Maid will wear a corsage of the bridesmaids flowers. my parents are based around my flowers, and Brian's parents have white spray roses added to differentiate. We also did corsages for the grandmothers, bouts for the grandfathers, a bout for my nephew and corsages for my nieces (simple daisies), and a corsage for my stepmom. We plan on getting a fake stephanotis pomander ball for my niece, so she can keep it (the church doesn't let rose petals anyway).
The best part is for Devin, our ringbearer. He is autistic- I worked in his home therapy program with him for a year. Brian and I are extremely close to his family; Shannon (his mom) and I are really good friends- and she is such an advocate for her children, implementing a total home therapy program for him all on her own. His dad, FahPow, works for duPont. He has a little sister, Sheenie, who is a doll. And then there's Dev- this adorable little 6 year old who will totally win your heart over with his giant smile, close hugs, and blowing kisses. He isn't verbal, but he communicates in other ways- typing, spelling, word walls, signing, etc. And let me tell you, from the moment I met him, from the moment Brian met him, he has just weaseled his way into our hearts and has stayed there. Even though I don't work in his home therapy program anymore because of my RSD/CRPS, we have still remained very close with them, attending birthday parties and Autism walks. We feel so, so blessed to have them in our lives; Devin and Shannon have taught me so much about joy and about living, and I thank them for those invaluable lessons.
When we told Barb about Devin, we were worried about two things- one, the pin for the bout. She said no worries, they have super strong magnets they can use that he won't be able to rip off. The second worry was about real flowers- we didn't want him potentially putting something pretty but poisonous items in his mouth. Again, not an issue. Barb brought in two different stems of Blue Delphinium, and I was like, okay those are pretty. She proceeded to point out which one was fake and which one wasn't- you couldn't even tell the difference! So Dev will get fake blue delphinium with a magnet, and all is well with him!
Right now, they are not doing our centerpieces, since our centerpieces are included with our package at the hall. Hopefully though, fingers crossed, Barb can work her magic and get on the preferred vendors list for the hall, and then we can go through her. Either way, I plan on doing Gerbera daisies in bright colors for the tables, because I really like bright colors.
Overall, the pricing was amazing, and we were so pleased with Barb and Belak's. They do such an awesome job- Brian and I just went to a wedding where she did them, and they were breathtaking. I never thought I would be excited about flowers (I hate, hate, hate anything nature or gardening, except for veggie gardens), but now that I know what I am getting, and how different it will be from usual wedding flowers, I cannot WAIT!!
We are using Belak Flowers, in Wilmington, DE. Located on Philadelphia Pike, Barb (the owner) is a member at our church. I have seen her work before, and I can't gush enough over it. Fabulous, that's what it is. One of the girls on the Knot, Steph, used her as well, and absolutely loved her.
So we went and met with her- and of course, per the usual Brittany, I had no idea what I wanted. Does this surprise anyone? We sat with her for 3 hours. 3 hours of flowers, trying to figure out what I wanted, what looked the best, etc etc. And Barb was amazing, so accommodating, and helped steer me towards what I wanted.
During the appointment, we kept going through books of bouquets, trying to figure out a starting point. I knew I did not want Calla Lilies (soooooo overdone at weddings), and I didn't really want blue flowers- while I have a blue dress (or at least a blue train), blue flowers are so few, which would have left us with only a few choices. And really, I am not a fan of hydrangeas.
I told Barb I definitely wanted Stephanotis- it's one of my favorite flowers, if not the most favorite. We decided early on to use the stephanotis, but reserve it only for Brian and I. I wanted something to designate our status, and what is better than my favorite flower? In one of the books she has, she had this gorgeous bouquet that I kept going back to. Made up of Freesia, Gardenia, and Green Lisianthus, with other white filler flowers, it was so different, so unique, yet so gorgeous and simple. She noticed, and asked me about it. She assured me that it would look fine against my dress, even with the green. I had also seen a bouquet with my other favorite flower- Stargazer Lilies. I started thinking out loud.
We ended up replacing the gardenia with stargazer lilies, the freesia (which is a branch flower) with green berries, and adding white daisies with green center. We kept the green lisianthus. So, my bouquet is Stargazer lilies, white daisies, green lisianthus, stephanotis with blue head pins, white filler, and baby's breath, my third favorite flower. I will have a white wrap, with blue crisscrossing ribbons.
I am in love with it. I never thought I would be so happy about flowers, but I really think these are going to turn out wonderful- and when you add in the fact that pink is my favorite color and green is Brian's favorite color, well, that just makes it even more perfect. Brian's boutonniere will be several stephanotis flowers, with blue heads and a blue wrap.
We based everyone else's flowers on mine. The girls will carry smaller bouquets of stargazer lilies, white gerbera daisies (my final favorite flower- love how whimsical they are!), white filler, and we also added blue delphinium (the only blue flower I sort of liked). They will have blue wraps with white crisscrossing ribbons. The groomsmen will wear a daisy/blue delphinium bout, and the Best Maid will wear a corsage of the bridesmaids flowers. my parents are based around my flowers, and Brian's parents have white spray roses added to differentiate. We also did corsages for the grandmothers, bouts for the grandfathers, a bout for my nephew and corsages for my nieces (simple daisies), and a corsage for my stepmom. We plan on getting a fake stephanotis pomander ball for my niece, so she can keep it (the church doesn't let rose petals anyway).
The best part is for Devin, our ringbearer. He is autistic- I worked in his home therapy program with him for a year. Brian and I are extremely close to his family; Shannon (his mom) and I are really good friends- and she is such an advocate for her children, implementing a total home therapy program for him all on her own. His dad, FahPow, works for duPont. He has a little sister, Sheenie, who is a doll. And then there's Dev- this adorable little 6 year old who will totally win your heart over with his giant smile, close hugs, and blowing kisses. He isn't verbal, but he communicates in other ways- typing, spelling, word walls, signing, etc. And let me tell you, from the moment I met him, from the moment Brian met him, he has just weaseled his way into our hearts and has stayed there. Even though I don't work in his home therapy program anymore because of my RSD/CRPS, we have still remained very close with them, attending birthday parties and Autism walks. We feel so, so blessed to have them in our lives; Devin and Shannon have taught me so much about joy and about living, and I thank them for those invaluable lessons.
When we told Barb about Devin, we were worried about two things- one, the pin for the bout. She said no worries, they have super strong magnets they can use that he won't be able to rip off. The second worry was about real flowers- we didn't want him potentially putting something pretty but poisonous items in his mouth. Again, not an issue. Barb brought in two different stems of Blue Delphinium, and I was like, okay those are pretty. She proceeded to point out which one was fake and which one wasn't- you couldn't even tell the difference! So Dev will get fake blue delphinium with a magnet, and all is well with him!
Right now, they are not doing our centerpieces, since our centerpieces are included with our package at the hall. Hopefully though, fingers crossed, Barb can work her magic and get on the preferred vendors list for the hall, and then we can go through her. Either way, I plan on doing Gerbera daisies in bright colors for the tables, because I really like bright colors.
Overall, the pricing was amazing, and we were so pleased with Barb and Belak's. They do such an awesome job- Brian and I just went to a wedding where she did them, and they were breathtaking. I never thought I would be excited about flowers (I hate, hate, hate anything nature or gardening, except for veggie gardens), but now that I know what I am getting, and how different it will be from usual wedding flowers, I cannot WAIT!!
Tuesday, September 15, 2009
30 things you may not know about my Invisible Illness...
Please support National Invisible Illness Awareness Week! If you have an invisible illness, copy and paste this, and write your own inspirational story in the answers to the questions. Tag random people that might not know about what you are living with, or that you are living with it, so they can spread the word about invisible illnesses.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Reflex Sympathetic Dystrophy (RSD); also known as Complex Regional Pain Syndrome (CRPS)
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: the loss of freedom and independence that comes with this disease. I am only 23 years old, but I am not allowed to drive, and depend on others for basic needs.
5. Most people assume: that "it's all in my head" or that the pain isn't as bad as I say it is. Most assume this because I often have a smile on face; they don't realize how much effort it takes to put that smile there.
6. The hardest part about mornings are: the nights before. Research has shown that patients with RSD/CRPS or other types of chronic pain have increased activity and duration of activity in their prefrontal cortex of the brain; this translates to an inability to calm down, relax, and unwind at the end of the day, which results in the inability to rest. Often, I am lucky to get only a few hours of sleep each night, because I can't calm down and because of the pain.
7. My favorite medical TV show is: Mystery Diagnosis on TLC- they did an episode on my disease!
8. A gadget I couldn’t live without is: my cane, wheelchair, and the time-released pain patches and medication that technology has come up with (because of the time released items, the side effects I have are minimal compared to other pain meds).
9. The hardest part about nights is: Trying to calm down so that I can attempt to get a few hours sleep, and the pain that has accumulated throughout the day; laying down and not having things to do means I can't ignore it.
10. Each day I take: comfort in knowing that this is real; it's not in my head. This is a real, debilitating disease recognized by doctors and while it takes so much from me, I know that since it is real, I have hope for what will come in treatment for it.
11. Regarding alternative treatments: Faith and hope get you through so much on the difficult days, and give you something to praise the Lord about on the good days. I know that I have my guardian angel watching out for me, and no matter what happens, God and Jesus love me for me.
12. If I had to choose between an invisible illness or visible I would choose: invisible- I hate the pity I get from people who know I have the disease, and I don't think I could take the amount of pity I would get from a visible disease. Though I have to say, being helpful and pitying someone are two very different things; remember that when someone in a wheelchair is struggling to get through the door by themselves. Hold the door for them, smile, and help them out- but don't pity them.
13. Regarding working and career: Unfortunately, the work force is not a place that is very understanding, nor does it want to be. I have lost jobs over this disease, because they don't understand or care about the amount of pain I am in. But I keep trucking, and as long as I can do what I really want in life- to be a wife and mother- then I will be fine.
14. People would be surprised to know: How exactly powerful the medication I am on is. I take enough to just get through one day that would put a fully grown man to sleep, and would kill a child. Also, the amount of surgeries and minor procedures I have had would shock people for a disease that isn't visible- I am at 18 and counting.
15. The hardest thing to accept about my reality has been: It's permanent and there is no cure. I am 23 years old, and have a crippling and debilitating disease. Also, some people think I am making this up or it's all in my head- I have to let those people go and move on and not worry about them.
16. Something I never thought I could do with my illness that I did was: unfortunately, there isn't much that I have been able to do with this disease. But that's okay, because I am headed towards the biggest moment in my life, and I will do that with this disease- I will marry the man I love on October 2, 2010. I guess you could say planning my life and wedding is something I never thought I would be able to do.
17. The commercials about my illness: do not exist.
18. Something I really miss doing since I was diagnosed is: Horseback riding. When I was riding, even though I wasn't very good, I felt so free and good about myself. Now, I won't ever be able to ride a horse again, and it breaks my heart so much.
19. It was really hard to have to give up: my independence and driving abilities. Like I said before, when you are 23 and have to depend on others, it's extremely hard to accept.
20. A new hobby I have taken up since my diagnosis is: I didn't really take up new hobbies, but I have gotten more involved in the ones I loved doing before, but never had time to do: sewing, jewelry making, and scrapbooking. Also, I have become very active in the Boy Scouts with my fiancee, and it really helps me to teach others about disabilities- we do it every time we work with the kids in scouting.
21. If I could have one day of feeling normal again I would: go horseback riding, for hours and hours.
22. My illness has taught me: who really cares for me, what true love is, patience, humility, faith and hope, and that vanity has no place in my world.
23. Want to know a secret? Just because this disease has effected my life in every aspect, including my weight and ability to exercise, I am still gorgeous and beautiful in every aspect of the words, and no one will take that away from me.
24. I love it when people: are helpful without pitying.
25. My favorite motto, scripture, quote that gets me through tough times is: There is no great loss without some small gain (Ma Ingalls from Little House on the Prairie), and If you want to make God laugh, tell him your life plans. Also, Michael J. Fox once said, "Vanity is the first thing to go" when dealing with a chronic illness, and that has helped remind me tremendously what this is all about.
26. When someone is diagnosed I’d like to tell them: It won't be easy, but this will not beat you if you don't let it. Rely on those who want to help, pray, and have faith.
27. Something that has surprised me about living with an illness is: the response I get from certain individuals, and the response I don't get from other individuals. Sometimes the people you thought wouldn't step up to the plate are the people who go above and beyond, and the people who you thought would stick by your side are often the first to desert in times of need.
28. The nicest thing someone did for me when I wasn’t feeling well was: love me. Every day Brian makes sure to let me know that regardless of this disease, he still loves me, he still wants me to be his wife and the mother of his children, and he makes sure to praise me for doing the small things that others find insignificant, but are huge accomplishments for me.
29. I’m involved with Invisible Illness Week to:educate, motivate, and let others know that they are not alone in dealing with Invisible Illnesses.
30. The fact that you read this list makes me feel: appreciated and acknowledged as someone fighting a huge and difficult battle that no one should have to fight. Thank you; I cannot say thank you enough.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Reflex Sympathetic Dystrophy (RSD); also known as Complex Regional Pain Syndrome (CRPS)
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: the loss of freedom and independence that comes with this disease. I am only 23 years old, but I am not allowed to drive, and depend on others for basic needs.
5. Most people assume: that "it's all in my head" or that the pain isn't as bad as I say it is. Most assume this because I often have a smile on face; they don't realize how much effort it takes to put that smile there.
6. The hardest part about mornings are: the nights before. Research has shown that patients with RSD/CRPS or other types of chronic pain have increased activity and duration of activity in their prefrontal cortex of the brain; this translates to an inability to calm down, relax, and unwind at the end of the day, which results in the inability to rest. Often, I am lucky to get only a few hours of sleep each night, because I can't calm down and because of the pain.
7. My favorite medical TV show is: Mystery Diagnosis on TLC- they did an episode on my disease!
8. A gadget I couldn’t live without is: my cane, wheelchair, and the time-released pain patches and medication that technology has come up with (because of the time released items, the side effects I have are minimal compared to other pain meds).
9. The hardest part about nights is: Trying to calm down so that I can attempt to get a few hours sleep, and the pain that has accumulated throughout the day; laying down and not having things to do means I can't ignore it.
10. Each day I take: comfort in knowing that this is real; it's not in my head. This is a real, debilitating disease recognized by doctors and while it takes so much from me, I know that since it is real, I have hope for what will come in treatment for it.
11. Regarding alternative treatments: Faith and hope get you through so much on the difficult days, and give you something to praise the Lord about on the good days. I know that I have my guardian angel watching out for me, and no matter what happens, God and Jesus love me for me.
12. If I had to choose between an invisible illness or visible I would choose: invisible- I hate the pity I get from people who know I have the disease, and I don't think I could take the amount of pity I would get from a visible disease. Though I have to say, being helpful and pitying someone are two very different things; remember that when someone in a wheelchair is struggling to get through the door by themselves. Hold the door for them, smile, and help them out- but don't pity them.
13. Regarding working and career: Unfortunately, the work force is not a place that is very understanding, nor does it want to be. I have lost jobs over this disease, because they don't understand or care about the amount of pain I am in. But I keep trucking, and as long as I can do what I really want in life- to be a wife and mother- then I will be fine.
14. People would be surprised to know: How exactly powerful the medication I am on is. I take enough to just get through one day that would put a fully grown man to sleep, and would kill a child. Also, the amount of surgeries and minor procedures I have had would shock people for a disease that isn't visible- I am at 18 and counting.
15. The hardest thing to accept about my reality has been: It's permanent and there is no cure. I am 23 years old, and have a crippling and debilitating disease. Also, some people think I am making this up or it's all in my head- I have to let those people go and move on and not worry about them.
16. Something I never thought I could do with my illness that I did was: unfortunately, there isn't much that I have been able to do with this disease. But that's okay, because I am headed towards the biggest moment in my life, and I will do that with this disease- I will marry the man I love on October 2, 2010. I guess you could say planning my life and wedding is something I never thought I would be able to do.
17. The commercials about my illness: do not exist.
18. Something I really miss doing since I was diagnosed is: Horseback riding. When I was riding, even though I wasn't very good, I felt so free and good about myself. Now, I won't ever be able to ride a horse again, and it breaks my heart so much.
19. It was really hard to have to give up: my independence and driving abilities. Like I said before, when you are 23 and have to depend on others, it's extremely hard to accept.
20. A new hobby I have taken up since my diagnosis is: I didn't really take up new hobbies, but I have gotten more involved in the ones I loved doing before, but never had time to do: sewing, jewelry making, and scrapbooking. Also, I have become very active in the Boy Scouts with my fiancee, and it really helps me to teach others about disabilities- we do it every time we work with the kids in scouting.
21. If I could have one day of feeling normal again I would: go horseback riding, for hours and hours.
22. My illness has taught me: who really cares for me, what true love is, patience, humility, faith and hope, and that vanity has no place in my world.
23. Want to know a secret? Just because this disease has effected my life in every aspect, including my weight and ability to exercise, I am still gorgeous and beautiful in every aspect of the words, and no one will take that away from me.
24. I love it when people: are helpful without pitying.
25. My favorite motto, scripture, quote that gets me through tough times is: There is no great loss without some small gain (Ma Ingalls from Little House on the Prairie), and If you want to make God laugh, tell him your life plans. Also, Michael J. Fox once said, "Vanity is the first thing to go" when dealing with a chronic illness, and that has helped remind me tremendously what this is all about.
26. When someone is diagnosed I’d like to tell them: It won't be easy, but this will not beat you if you don't let it. Rely on those who want to help, pray, and have faith.
27. Something that has surprised me about living with an illness is: the response I get from certain individuals, and the response I don't get from other individuals. Sometimes the people you thought wouldn't step up to the plate are the people who go above and beyond, and the people who you thought would stick by your side are often the first to desert in times of need.
28. The nicest thing someone did for me when I wasn’t feeling well was: love me. Every day Brian makes sure to let me know that regardless of this disease, he still loves me, he still wants me to be his wife and the mother of his children, and he makes sure to praise me for doing the small things that others find insignificant, but are huge accomplishments for me.
29. I’m involved with Invisible Illness Week to:educate, motivate, and let others know that they are not alone in dealing with Invisible Illnesses.
30. The fact that you read this list makes me feel: appreciated and acknowledged as someone fighting a huge and difficult battle that no one should have to fight. Thank you; I cannot say thank you enough.
Saturday, September 12, 2009
Hi. Do you remember me? I'm Brittany, the bride?
Yes, I know. It's been a while. Please don't get on my back about it just yet; I promise, cross my heart, I will tell you why.
First off, what do you think of these?
I love them. Love them, love them, love them. They are the color of my train/the color of the girls dresses. They are comfortable. They are nifty, something not expected- from me, of all people. They aren't heels, something I can't wear. They aren't $80 for unflattering, uncomfy flats that I will wear only once. And, best of all, they are sparkly.
My mom thinks I am nuts for wanting to wear something like this. Maybe I am. But when you can't wear heels, and dressy flats put you in pain, why would I want to wear something not like these? Brian loves them, as does half my facebook- in fact, there wasn't a bad comment on the picture at all. Brian even offered to buy them for me! Plus, with these, hopefully I won't need as much help on my wedding, in terms of using my cane/wheelchair/someone's arm.
But wait, Brittany. I thought you told us that you would have your surgery, lose the weight, and walk down the aisle pain free and aide free to the man of your dreams?
Yeah, that was the case. Or so I thought. They denied my surgery.
Shock. Pain. Hysteria. Tears. Yelling and Screaming. More tears. Grief. All of these emotions have been felt over the past 2 weeks, when I found out that I was denied. This was supposed to be a foolproof case, no sweat. Well, apparently, the board that reviewed my case (supposedly an independent board- ha. ha. ha.) doesn't read their facts- or their own reports, for that matter. They think I need to try many different drugs, PT, a longer opiate regime...ALL of which are listed at the beginning of the report as tried! We honestly don't know what to make of the report, either, since they don't really say if I should retry, or if I have to try and then can get the surgery. We think it's the latter, which means all we should be able to do is make a list of dates with the item tried, and show the courts.
Seems easy, huh? Yeah, well, as easy as that sounds, Delaware courts do not seem to favor worker's comp cases, and especially those that deal with RSD. Plus, with the courts systems being so overloaded, this could take 8 months to a year. Which means that I won't have the surgery by my wedding. And yes, it is as heartbreaking a blow to me as you can ever imagine.
Brian has been wonderful- he said he proposed to me as a larger size, he loves me as a larger size, and if it means he marries me as a larger size, then he totally okay with that. It helps somewhat to ease the insecurity I feel about myself, but not totally. Overall, I think Brian is the one person I ache and hurt for the most. He takes care of me. Mentally, phsyically, emotionally, spiritually, financially- in every way you can imagine, he cares for me. And while I know he loves me and would do anything for me, it still is very taxing on a 23 year old. Brian never thought that the woman of his dreams would be an invalid- hell, I never thought I would be sick when I got married. So to watch him care for me in every sense of the word, and then to get news for this, makes me ache for him more than it does for me.
I love Brian, and I am trying to stay strong and rely on my faith during this difficult time. The doctor upped my meds again, did another injection (which calmed down the flare up I was having), and we just keep trucking. It's not easy, don't get me wrong- this is one of those times in life that no one thinks they will ever have to go through. Sometimes it feels like my faith is on sinking sand instead of rock, but when that happens, I pray for the perserverence that I know only Christ can give me. He, after all, loved me before I was knit together in my mother's womb, and will never leave me, no matter what.
First off, what do you think of these?
I love them. Love them, love them, love them. They are the color of my train/the color of the girls dresses. They are comfortable. They are nifty, something not expected- from me, of all people. They aren't heels, something I can't wear. They aren't $80 for unflattering, uncomfy flats that I will wear only once. And, best of all, they are sparkly.
My mom thinks I am nuts for wanting to wear something like this. Maybe I am. But when you can't wear heels, and dressy flats put you in pain, why would I want to wear something not like these? Brian loves them, as does half my facebook- in fact, there wasn't a bad comment on the picture at all. Brian even offered to buy them for me! Plus, with these, hopefully I won't need as much help on my wedding, in terms of using my cane/wheelchair/someone's arm.
But wait, Brittany. I thought you told us that you would have your surgery, lose the weight, and walk down the aisle pain free and aide free to the man of your dreams?
Yeah, that was the case. Or so I thought. They denied my surgery.
Shock. Pain. Hysteria. Tears. Yelling and Screaming. More tears. Grief. All of these emotions have been felt over the past 2 weeks, when I found out that I was denied. This was supposed to be a foolproof case, no sweat. Well, apparently, the board that reviewed my case (supposedly an independent board- ha. ha. ha.) doesn't read their facts- or their own reports, for that matter. They think I need to try many different drugs, PT, a longer opiate regime...ALL of which are listed at the beginning of the report as tried! We honestly don't know what to make of the report, either, since they don't really say if I should retry, or if I have to try and then can get the surgery. We think it's the latter, which means all we should be able to do is make a list of dates with the item tried, and show the courts.
Seems easy, huh? Yeah, well, as easy as that sounds, Delaware courts do not seem to favor worker's comp cases, and especially those that deal with RSD. Plus, with the courts systems being so overloaded, this could take 8 months to a year. Which means that I won't have the surgery by my wedding. And yes, it is as heartbreaking a blow to me as you can ever imagine.
Brian has been wonderful- he said he proposed to me as a larger size, he loves me as a larger size, and if it means he marries me as a larger size, then he totally okay with that. It helps somewhat to ease the insecurity I feel about myself, but not totally. Overall, I think Brian is the one person I ache and hurt for the most. He takes care of me. Mentally, phsyically, emotionally, spiritually, financially- in every way you can imagine, he cares for me. And while I know he loves me and would do anything for me, it still is very taxing on a 23 year old. Brian never thought that the woman of his dreams would be an invalid- hell, I never thought I would be sick when I got married. So to watch him care for me in every sense of the word, and then to get news for this, makes me ache for him more than it does for me.
I love Brian, and I am trying to stay strong and rely on my faith during this difficult time. The doctor upped my meds again, did another injection (which calmed down the flare up I was having), and we just keep trucking. It's not easy, don't get me wrong- this is one of those times in life that no one thinks they will ever have to go through. Sometimes it feels like my faith is on sinking sand instead of rock, but when that happens, I pray for the perserverence that I know only Christ can give me. He, after all, loved me before I was knit together in my mother's womb, and will never leave me, no matter what.
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