Struggling with RSD...

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.

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.

So Many Blessings!

SOOO much has happened since the last time I posted! I have been away, in NOLA with our church's youth (more about that in the next post), so I haven't had time to post until now, but boy, do I have exciting news for everyone!

WE FOUND OUR HOUSE! It's a 3 br/1 ba in Elsmere (the safe part), an end unit townhome. It needs some work, but out of all the ones we have seen, this one is by far the best in move in ready condition. The 3rd bedroom is basically a large closet, but it would work for a nursery for our first child :) It has a nice size yard, a basement, kitchen, dining room, and living room. It has a covered back deck on the back.

More than likely, with our tax credit money, we will redo the kitchen and bathroom. The kitchen is just too small for me to cook in (I can't wait!), so we will probably get rid of the wall dividing the kitchen and dining room, and instead do a country eat-in kitchen. This way, it will open it up, and it will provide for more counter and cabinet space. The bathroom right now is completely purple. Tub, toilet, sink, and tile- all shades of lavender. Brian and I aren't too fond of the colors, so we decided we will probably take some space from the bedroom next to it. That way, we can add some space to the bathroom and closet space to the bedroom- it will make it a tad smaller, but it's an okay size now, so it should be fine. Add a pocket door for the bathroom, and boom- all better!

We will repaint (obviously!), and we will be ripping up the carpet and refinishing the walnut hardwood floors that are throughout the house (sqee! I can't wait for hardwood floors!), and we will be installing new appliances throughout, since the ones there are original and look antique!

Brian and I are blessed in the fact that Brian has many, many hands on skills that will save us much money in the long run- his carpentry skills, along with all his other construction knowledge, will come in very handy! This way, we can start building equity in the house, but we don't have to put out much moola to do it- just a little (okay, a LOT) of elbow grease. We don't plan on staying here forever, but as a starter home, it's a great little house. It honestly made since to do this- our monthly payments will be around the same, if not less, as rent for the apartment. This way, we aren't throwing it down the drain.

We had the house inspection today- there are some things that need to be fixed, the big ones being the brick facade and the roof. Brian has the ability to do everything except the roof, and quite frankly, it's so much money that we just can't afford that expense right now. When we closed on the house, we told the current owners (it's an estate sale) that we would not nickel and dime them for every little wrong. The roof, though, is too major of an issue, and considering that there is a little bit of water damage inside/upstairs in the bedrooms (nothing active, and nothing that is concerning right now), it needs to be taken care of, and fast.

I have not heard about surgery...yet. We were told by the end of July, which being there's only a few more days left, hopefully we will hear something positive soon!