Letter to loved ones

   I did not write this personally, but I did edit a few things to my personal situation. Everything in this letter is truth, from those of us who suffer this disease. This is not an exaggeration. If you asked our caregivers, in my case specifically my husband Daniel, he would tell you this is exactly what I go through every day. Up until now, it has been impossible to say the same explanation to each person I care for. This really says it all. I BEG you, as a friend or family member, PLEASE take the time to read the letter below. I know those that sincerely love me & care for me will, though I know it is lengthy. If you have a response or question, I would love to hear it. I do not want this to be taboo or scare anyone away. We need others to understand & be educated as this fight is only possible with outside support. God Bless & thank you from the bottom of my heart. XOXO

 Love, Tiffany

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Dear Loved One,

Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome Type 1 is a rare chronic, painful, and progressive neurological condition that affects skin, muscles, joints, and bones that causes severe chronic pain, sympathetic nervous system, immune system and motor system dysfunction as well as other things like fatigue, sweating, migraines, inflammation, cold intolerance etc. RSD means that I am in constant chronic and severe pain, all the time (awake and asleep), as well as MANY other things. Just because you can't see these things doesn't mean they aren’t real. Worst of all, there is NO cure.

Most people don't understand much about RSD (even the medical specialists don’t know why it happens or exactly what does happen) and its effects, and of those that think they know (including many medical specialists) many are actually misinformed.

In the spirit of informing those who wish to understand......These are the things that I would like you to understand about me before you judge me...

I am scared. I don't know what the future holds for me. Will I always be in pain and suffer from the other symptoms this disease/ syndrome throws at me or will I be one of the lucky ones, who may get a remission (there is NO CURE for RSD/CRPS1). If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. RSD has taken so much away from me. I can no longer do many of things I enjoy doing, even the simplest and most innocent of things can make my pain a lot worse (things like vibration, the wind blowing, a change in temperature, a slight brush, even my clothes touching my skin). I have difficulty just completing simple tasks. If I appear angry please understand it is RSD I am angry with, not you.

Please understand that having RSD doesn't mean I'm not still a human being. I spend most of my day being very careful about what I do, and being in constant severe chronic pain. If you visit I might not seem like much fun to be with, but I'm still me… stuck inside this body. I still worry about going back to school or work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. RSD has affected my body and nerves etc, not my mind (although it does effect my thinking as it would anyone who was always in constant severe pain). I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating etc with everyone else, but it hurts when you exclude me. Maybe I can't skate etc with everyone else but maybe I can bring the hot chocolate etc and watch.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know most of the time I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with a lot of invisible pain, fatigue and other symptoms. Even on a good day I feel like you do when you have the flu plus at the same time like someone lit me on fire, while electrocuting me and hitting me with a hammer. Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for months/years (RSD has NO cure, while some can get a remission it is very unlikely if it wasn’t diagnosed and treated in the first couple of months and most suffers are not lucky enough for this to happen, for many it takes years). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be worse that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please don't tell me how “Auntie Mary” cured her joint, nerve, pain etc problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for RSD (and as they are still not even sure why or how it occurs until this happens and then they find a way to treat it, then I will have this always), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

I want you to know that the pain and other symptoms of my RSD fluctuate/ flare. Please don't attack me when I'm worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my pain and other symptoms may not have been as bad; today (now) it may be worse (but I am NEVER pain free), who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to EVERYTHING that I do.

RSD and the pain and symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please remember I am in pain every second of everyday and in a pain that is worse than you can imagine or explain – RSD pain is considered by some doctors & patients to be worse than non terminal cancer pain, childbirth or the pain from a digit amputation, and it is constantly and consistently there, and while it does fluctuate in intensity it NEVER goes away EVER. I NEVER get a break from it.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Telling me that I need some fresh air and exercise etc is not correct and probably not appreciated - if I could possibly do it then, I would.

RSD and most chronic illnesses/ diseases may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that caused you pain 24/7 and could spontaneously get worse through no fault of you own, or from the slightest vibration or touch etc) but THEY ARE NOT CAUSED BY DEPRESSION. Telling me it is all in my head or that I need to get psychiatric help, does NOT help. If my treating doctors think that getting help for any secondary/ reactive depression that I might have will be helpful to me and my health, then I will do so, BUT getting this sort of treatment will NOT treat/cure or even HELP my RSD and symptoms...

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. RSD does not forgive its victims easily.

Please understand that I can't spend all of my energy trying to get well from RSD… it is incurable. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like RSD is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with RSD or any chronic illness/disability.

Finally, please remember that I am the same person I was before I started suffering from and was diagnosed with this. RSD doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before.

I need lots of love, understanding, support and hugs, just like you.

But most importantly, I need you, to understand me.

Day 3 - SCS Trial #2

   So my second attempt at a Spinal Cord Stimulator trial was on this past Tuesday, the 17th. If you've read my previous posts on here during my first trial, you know that it was not highly successful. I lucked out on getting a second try when we changed health insurance companies this January, & my St. Jude reps convinced Dr. S it would be worth it. The first trial was a little over a month ago. This time, things seem much different!

   I knew mostly what to expect going into the second trial thankfully. I knew everything that would happen during surgery, so I was a lot less nervous this time. I also knew the severe pain & discomfort that would come with it as well. Again, that doesn't happen for everyone, but I am a slightly difficult case. I tend to experience surgical pain worse than most people. Part of that of course, is that pain meds simply do not work on me. I think I've been taking opiates so long that I've gotten tolerant to them, & my body simply stopped responding. I have that problem during surgery as well. Those that have done a SCS trial know that you are awake during, but usually under heavy sedation so that you basically don't remember the procedure or are very "sleepy". I guess I am just unlucky because I am now fully awake & conscious during these types of surgeries. Dr. S has given me the max amount of sedation & pain meds during the trials, & I have simply not responded to them. I know that contributes to me being in so much pain after & during the whole 7-day trial. I also have morphine to take regularly for pain, but even at the max dose, it doesn't help me in the slightest.

   The past 2 days, I've been trying to sleep when I could to get through the pain. Ice packs again have been a big help in a minimal way, if that makes sense! The incision site looks good (I'll post a pic later) & there seems to be no redness or bleeding this time. There is a LOT of itching under all of the tape though this time. It feels like I have poison ivy! I still have until Tuesday to deal with it; oh it's going to be fun! One big difference this time is that my leads are at T9 instead of L1, which is higher towards my middle back. I'll re-post this diagram from a previous post to help you see where each level is.

   Now to what everyone was waiting to hear from me... Is the SCS working & where do I have stimulation? First, I have to say this time the stim is working SO much better even in the first couple of days! The sensation is better as well as the coverage. Ideally, my wish list for coverage would be the following...

Toes, Feet, Lower legs on top & outer side, Upper legs on top & outer side, Hips, Butt & Lower Back

I'm getting some patchy lower leg areas not so much on the outside though. I'm also getting some upper leg coverage too, but again not on the outer sides. I have excellent coverage on the top of my upper/lower legs. When I have the stim turned up kinda high, I get some stimulation in other areas, like my stomach & some tingling in my feet. When you compare this to my wish list, it doesn't seem like a whole lot, but it's really all about how it's helping where I feel it. The thing is, my pain has kicked up in my left leg a lot today, and when I simply turn up my SCS, I don't notice the pain very much! It is still there, but a lot less! Even though the pain is sometimes where I don't have stim coverage, it still helps shield any pain coming from my lower legs. I wish this was the way the first trial went! Also, I have turned the stim off only briefly to test my pain. The pain is much more significant with it off. That tells me this is working! When I do turn the SCS off, I have this tingling that stays in my legs for a few minutes, which is a bit weird but nice. The sensation I have overall is really nice. It's a smooth vibration that almost makes my legs kind of numb. It makes the sensitivity better because I don't really feel light touch. I'm truly excited just talking about all of this! When the first trial started, I had nothing to compare it to & thought it was perhaps working. Now, in comparison, that trial was terrible! I've even been able to sleep with this SCS on & I don't get "shocked" with every move! I know I will have less to report this time around in regards to details, but it's simply because I covered most of it during the first trial. For the most part, I'm going through the same thing, just with different results. I will post again before I have the leads out next Tuesday. Tomorrow I go for re-programming (if I want it) & just to have Dr. S look at the entry site. I don't think I need any other programs though! Thank you to everyone that's been following me on this journey so far! It's not over, but we're one step closer! God Bless & good night!

Depression & CRPS

   I have something I want to talk about that has also been a significant challenge in my life. I’ve been down this road before when I was in high school, but things are different this time. Somewhat worse, somewhat better. It's something we don't ask for, but can take over & ruin your life completely if it gets bad enough. Some believe if you don't talk about it, it doesn't exist. Too often it is judged like society judges an addiction, like it's something we should be able to stop at any time or learn to control. Believe it or not, it is a disease. And like a disease, it is only understood through education & awareness."IT" is the taboo subject of:

                            DEPRESSION

    If you’re reading, thank you, because this road is a long one…The truth is, I was in denial for a long time, but I have a problem. I cannot help it, I didn’t ask for it, but I got it. It’s called DEPRESSION. I have very severe panic / anxiety attacks, and it effects my whole body. It hurts, emotionally and physically. I also have a sleeping disorder. All of the above have been made worse since I developed CRPS. In fact, I hadn't had any issues with the above mentioned in years until the CRPS. Now each day I have to try to keep positive, calm myself down when the attacks hit & hope that the medicine I'm on continues to help.

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Here's some definitions I dug up to help accustom you with the basics…

CLINICAL DEPRESSION:
A depression so severe as to be considered abnormal, either because of no obvious environmental causes, or because the reaction to unfortunate life circumstances is more intense or prolonged than would generally be expected. Depression is a medical illness that involves the mind and body. It affects how you feel, think and behave. Depression can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and depression may make you feel as if life isn't worth living. More than just a bout of the blues, depression isn't a weakness, nor is it something that you can simply "snap out" of. Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure

PANIC / ANXIETY ATTACKS:

The main symptom is an overwhelming feeling of fear or anxiety, along with physical reactions. The symptoms come on suddenly, often unexpectedly, and the intensity usually peaks within 10 minutes. While most symptoms fade within 30 minutes, it may take up to an hour for all the symptoms to go away completely. It is possible to have one attack after another in waves for an extended period of time, and it can seem like one continuous attack. Symptoms may include: Rapid breathing, shortness of breath, or feeling "smothered”,  pounding or racing heart or an irregular heartbeat, chest pain, tenseness, irritability, lightheadedness, sweating, choking feeling, nausea or an upset stomach, dizziness, shaking, or trembling, numbness or tingling, chills or hot flashes, fatigue or insomnia, fear that you are going to die, lose control, or "go crazy”, feelings of being detached from yourself or from reality. Another major symptom: persistent or severe fear or worry in situations where most people wouldn’t feel threatened. Anxiety attacks may be triggered by a specific action, such as drinking too much caffeine, or by a situation, such as being in a large crowd. Anxiety is the body's natural reaction to danger or being scared. They may also develop suddenly without a known trigger. Isolating yourself and avoiding social situations can interfere with your ability to work and your relationships, especially with your family members and close friends.

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   So now, I’m hoping some of you may have a new view on these disorders. At one point or another, I have experienced ALL of these symptoms. That’s a lot to deal with for anyone. One thing that I left out is that this is mostly genetic / hereditary. Unfortunately it runs back generations in my family. You don’t get to “pick and choose” what you’re given to deal with or get over in this area. It’s a “dealt and deal with” situation. I have learned that this is who I am, and I will not let it take over my life, but it gets hard sometimes. Sometimes I need to be around people, sometimes I need to be alone. It varies. I’m also used to have anger issues as well. Many with depression do as it's "not fair" for us to have this struggle. Even those of us with CRPS feel that way probably often. Sometimes our worries & stress just get the best of us & are too much to deal with. My biggest fear? Will I ever have relief from this severe daily pain called CRPS? Not knowing if I'll ever get better after so many failed treatments & procedures is terrifying. Between the constant pain, dozens of medications I’ve been on & continue changing, medical bills, constant doctor appointments, being unable to work resulting in only minimum SS disability payments, regular bills, wanting children more than anything & knowing I cannot any time soon, the stress my illness has on my husband… This barely scratches the surface for me, but it's overwhelming.

   One thing I've been told before is that "it’s all in your head". Sorry, but that’s the way it is. If someone ever tells you that, you don't need them in your life. If a doctor ever says that, never go back to them because they obviously don't know much about the subject. You can't always turn your thoughts off & ignore your worries or concerns. I try to stay busy or find something else to focus on when I get in one of my moods, but it takes practice. Depression doesn't just get better overnight, no matter what you do. Yes, there are medicines to help, but it doesn't just "fix" the problem. Depression is even harder to overcome when the underlying causes of it remains unchanged. Having an incurable disease is one of my causes. As my CRPS is permanent, so may the depression be permanent. They both can improve however. But no matter... that's ok! I will deal with it one day at a time like I do any other challenge. 

How else has depression affected me? 

   Sometimes I don't want to get out of bed. Sometimes I just want to cry until I have no tears left. Sometimes I ask God "why me?". I have hoped I didn't wake up the next morning, though I wouldn't do anything myself to cause it. I've felt like I was dying. I've almost blacked out from panic attacks & had to go to the hospital because of them. The attacks will also cause me to vomit sometimes & I won't eat for a day or two. I have gone through spurts where I don't want to talk to anyone or be around anyone. I've pushed people out of my life because of that. I lost enjoyment in things I used to love doing, such as being outdoors. I've felt like nothing matters anymore & therefore nothing will ever get better. All of these feelings are not uncommon for someone who has depression. But I haven't gotten stronger on my own by any means. I continue to see a Psychologist & I take medicine. I am Zoloft for my depression & I take Ativan when needed for the attacks. It took a while for the Zoloft to build up in my system & have a real effect, but the Ativan kicks in pretty quick, which is needed for the attacks. I've also had my dose of Zoloft increased multiple times to allow me to get the best result when I'm having a rough patch. I'm never happy to have that done, but I know sometimes it's needed. It's also taken me a long time to learn different techniques to help me get through the rough times & attacks. For depression, I do a few things. I call my husband; I watch something that will make me laugh or look at pictures I love. I think or happy things that will happen in the near future, like a trip or holiday. I write poetry to get my feelings out & sometimes I do cry. It's therapeutic & like my mom always told me, God gave you tear ducts for a reason! When I have an attack, it's key for me to lay down at the first onset of symptoms. It helps for me to grab a cold washcloth to put over my eyes too. I take slow deep breaths & wait for it to pass. If I fail to lay down right away, that's when things get really bad & I will get dizzy, vomit, shake horribly, have difficulty breathing, etc. I only take the Ativan when I don't lay down fast enough. It took me a long time to find what helped me get through these episodes & it was trial and error for awhile. Each person is different. You have to find what works best for you. A good support system is key as well. You need loved ones who understand your illness, will help talk you through things & not judge you. I'm grateful I have a family & husband that I can lean on.

Tips on how to talk to someone about their depression? 

(Can also be a good example for asking someone about their CRPS)

I don't want pity. Don’t apologize. Is it your fault? Am I depressed? Yes. But there is not one simple person / thing to blame for this. Lots of little things “build up” to create this monster. And when it all comes out, it usually does at once. So there's not a "simple" answer to as to why. It's vital to be understanding & supportive, not judgmental. Some people might be open with their struggle, while others might not want to talk about it. If they don't want to share, understand that it's nothing against you. Depression hurts & when we talk about it, it often leads to sad thoughts & painful topics. If someone talks openly about their struggle, feel special, because they trust you. It takes most people a while to open up about their battle with depression, especially before they're officially diagnosed. Though a touchy issue, it is also important to watch for signs of depression in loved ones. It will never be easy to tell someone you notice them suffering, but always remember it could save their life. I am not a doctor or healthcare professional, but I will give links below for sites to help you talk to someone, including if you or someone you know may be suicidal. (Everything stated above is of my own opinion, experience & research only.) Like every moment, this too shall pass. There is ALWAYS a reason to live & never a valid reason to take your life. I admitted there was a problem; I found treatment & I survived. You can too.

    I don’t want this to be taboo. Over 19 million Americans deal with these issues daily too. The first step is to admit there’s a problem. The second is to reach out. I pray if you are dealing with depression or panic / anxiety attacks, that you understand it's not your fault, just "in your head" or anything to be ashamed about. There is help available & there is hope. Never give up or give in. I always tell myself that I need to be thankful for what I don't have too, because somewhere, someone else is fighting a much harder battle. Thank you for reading. God Bless!

Suicidehotlines.com

Suicide Crisis Center

Supporting a loved one with depression

Self Help & Coping Tips for Depression 

Help for anxiety sufferers

Self Help for anxiety relief

SCS Trial Pre-Op Appointment

   Today the hubby & I went to see Dr. S for my pre-op appointment before Tuesday the 17th which is dun...dun...dun... my 2nd SCS trial!!! It's only a few days away! I'm excited, worried & optimistic overall. I know it's very hard to stay positive when so many things go wrong, but I've found that once you get to that continuous point, it's easy to maintain that outlook. As long as God wakes me up every day, I cannot be negative! So I feel this time the trial will work! I feel better about this re-trial because I'm not going into this one blind. I know what to expect so I will be better prepared & I know what I need to get from this now. I know the questions to ask my St. Jude reps & I am better educated on the experience so that I can feel comfortable in making my final decision after this.
   Dr. S mainly wanted me to come in today so that we could talk about my pain, why it's increasing so much & to talk about lead placement this time. We have no real explanation why my pain is increasing the way it has been. I have no break in the pain & any movement seems to set the pain off these days. I cannot lay on either of my sides or back for long due to pain. I cannot stand for long or sit too long. I have extra padding on my side of the bed to help with comfort though it only helps a little. I've been bed-ridden almost 3 weeks now. I get up to shower, eat & use the bathroom. That's it. I only leave the house when going to a doctor's appointment. Sometimes I think, "what kind of a life is this", but I know the clouds have to part sometime. The hard part right now is just dealing with the pain because I don't have good management over it right now. Even the morphine I was put on last week isn't phasing me. It doesn't even make me sleepy! So far I've only gotten two things from taking morphine - itchiness on my neck / chest and constipation. Dr. S is not a fan of opiods because of the side effects they cause & the fact that a person will eventually always get used the pills, resulting in the need to continuously increase the dosage for any effect. I'm also not sleeping well if at all. Instead, he wants me to try something new that could help as a muscle relaxer, pain reliever & sleep aid. I will be starting that this evening. Hopefully it will help my back during the second trial as well so that I will be able to focus more on how the SCS is working.
   The other main thing I mentioned we talked about was lead placement this time. If you've read my other posts, the leads were placed at L1 the first time. We are going to start one level higher this time, and Dr. S will move them upwards if needed depending on the coverage I'm getting. We could go as high as T8 or T9. We also talked about the possibility of using 4 percutaneous for the trial rather than 2. He would place 2 side by side, then 1 on top of each of those. This would enable me to get wider coverage though could be more uncomfortable for my back. I'm not thrilled at the idea, but I said I'm willing to try anything at this point. It's only a week. (Yes, I decided to do another 7 day trial.) I can make it! If 4 leads are used, that may show us that for the implant it would be best to go with two separate paddle leads with one on top of the other. It's not common, but it is an option. It would mean the surgery will be more difficult both for the surgeon and for myself. Regardless, if it helps, it will absolutely be worth it! Right now I'm going to focus on the trial & not the permanent surgery. No reason to get scared right now!
   I'm hoping before the trial starts that I can get another post or two in, but we'll see. I want to start touching on other things that affect CRPS as well as things having CRPS affects. One of those things in particular is depression. I feel there is almost something taboo about the subject & it shouldn't be that way. I want to tell you about my battle with depression & let everyone know it's something not to be ashamed of. It's another disease we didn't ask for. But that's for another post... I would like to ask for any recommendations anyone may have on subjects for me to write about. Anything is game; nothing is off limits. Any questions are also great! When it comes to CRPS, my life is an open book. I know I had tons of concerns & questions when I was first diagnosed & I felt I had nowhere to turn. I want to open myself up as an outlet for anyone else that feels the way I did. We're all in this together! Thanks for reading! Hope everyone has a great evening & a pain-free weekend!

Long overdue post of updates...

   It has been almost 3 weeks since my last post, but with the holidays and my CRPS flaring up most days lately, my blog has sort of been on the back-burner. Let me say that I hope everyone had a great Christmas / Hanukkah & a wonderful New Year! I certainly did despite my normal pain. This year things were a little different in my family, but still so much fun! And the best gift I received this year on December 27th, was the birth of my second niece! I'm so smitten with babies and was overjoyed for this new life to join our family! Kids really are the best medicine for me and I'm grateful my husband's family is enormous & has so many! Needless to say, we've been busy & on the go a lot. I have loved getting out of the house, but since the end of my SCS trial, I knew it was a matter of time before it would all catch up to me.
   Thursday, January 5th, I ended up in the hospital ER again. The pain was so terrible I couldn't even stand up at all. I had been bed-ridden for the past week with such severe pain & by Thursday I just couldn't take it anymore. I feel like my breaking point / threshold for pain has gotten quite strong, but it finally broke. I'd been pushing myself so hard for weeks now not to go to the hospital ER, but I am very happy I went this last time. I'm sure I'm not alone in feeling like when I go to the ER, people look at me like I'm faking or crazy. For the first time in 2 years, I didn't feel that way Thursday. It was the quickest I'd ever been given a room and by the time the doctor came in, my morphine was already called in. The doctor was so sweet & understanding as well. Could this be a change in the hospital system or even better, a better understanding of CRPS by staff? Either way, I was happy. I also feel that due to my many visits to this same facility & previous calls made from there to my doctors, that there are now notes in my chart stating I am to be given morphine quickly. It seriously helps to have your doctors work with whichever facilities you frequent so there is no question about your disease or your needed treatments. I wish it didn't take a dozen ER visits for that to happen, but I'll take it. I had two doses of morphine with Benedryl as I'm allergic to opioids via IV. I went home a couple hours later feeling so much better. It didn't take everything away, but my pain was down to a "2" from a "10". Earlier that day I saw my rheumatologist & he put me on morphine pills twice a day now to help with the pain. By that night though, I truly felt like I was dying & I just wanted to cut my legs off.
   It's hard to explain to a normal person just how much pain CRPS causes. Sure, I can tell you about the basic throbbing, stabbing, tingling feelings, but it's really so much worse than that. I try to describe the pain to my husband often, but how do you convey an "invisible" pain that leaves you unable to bear any weight on your legs or wear any clothes because the slightest brush against your limb causes unimaginable pain? I've now had to pad my side of the bed with a down comforter for extra softness because it hurts to lie on either side or my back. I'll fall asleep, end up on my left side & wake up crying because it hurts so bad. I can't sit on a regular chair anymore without a pillow as my CRPS affects my derriere too. I've even torn the rotator cuff in my left arm a little due to overcompensating for my lack of leg strength. I have to use my walker around the house when I'm actually not in bed now. My favorite though is the stares I get when I do go out, even to the grocery store, in my wheelchair. That never ceases to amaze me! A few people are lucky they haven't been punched by my husband actually. I understand an occasional glance by someone, especially children, but a stare that last minutes? Even when I look right back at you?! Has society no common decency? We were at a well known electronic store one day, waiting in line to check out. The lady in front of us turned around, about 5 feet in front of us, while her husband was paying, and just stared at me. I don't know what she was thinking but I really couldn't believe how rude a person could be. I can imagine her thinking "there's nothing wrong with her, why the wheelchair?" My husband was so irate over this & in order to not cause a big scene, he made sure he caught her glare & simply stared back. My hubby is 6'4'' and a big guy. It would be hard to not be intimidated by his "serious" face unless like me, you know he's a teddy bear! Needless to say, her stare then stopped. I already know I don't appear "sick" or "disabled", but what happened to the phrase "don't judge a book by it's cover"? I guess some things never change, even with time.
   That last rant of a paragraph felt good to get out, lol. Normally I don't let that sort of thing bother me, but you know what? This is MY blog & I can rant about anything I want! Lol. So aside from the ER visit, I have some other pertinent news... I have scheduled my second SCS trial for Tuesday, January 17th. Yay! (I hope). If you've kept up with my first trial, you might wonder how I can be so optimistic about this one. The answer is simple- how can I not be? I have nothing to lose and only harder decisions to make about other treatments. This HAS to work. I believe with all of my heart that faith has led me here to this very moment, this very treatment. I have not given up and you know, if it pans out this doesn't work the second time, so be it. It's a part of God's plan for me & I trust His judgement. Every road takes you to something new and even when the scenery isn't so pretty, you'll find the breathtaking view ahead was worth every step on your path. It's the way of life & it makes you who you are. It hasn't been an easy journey, but I know one thing for sure. If one person with CRPS can say that I have helped them in any way, even if simply making them feel a bit more positive, then I'm ok with my disease. It means my suffering has helped someone else and that is enough for me. Imagine if that torch continued to be passed? Even with this disease, we can still bring a little hope and maybe a smile to each-others' lives.
   Well, I'm hoping to not go as long without a post again, but we'll see. Lol. I want to start talking about CRPS more in depth and the details of a Spinal Cord Stimulator. I just need to get my thoughts together to come up with some good information! For now, thank you as always for reading & I would LOVE, love, love some feedback or advice of any kind! Remember, awareness starts with us! Don't sit back & wait for someone else to do all the work!

First SCS trial is over!

   I think it's safe to say I'm an every other day poster since the trial started! Lol. As much as I try, it's just not easy to get on here every day & collect my thoughts enough to type them out. This project (my blog) means a lot to me & I am trying to commit to it because I really hope to be able to help someone else make difficult decisions through my first hand experiences. I know I have used other CRPS patients advice over some doctors at times. Anyways, to the good stuff...
   I had my leads removed yesterday (Tuesday) morning. Let me start by saying I was even more excited to have them removed than I was to start the trial. I think I need to explain that one because I don't want to discourage anyone! I had a full 7 day trial. Most people do an average of 4. I react to procedures / surgeries MUCH worse than most people as well. By the end of mine, my skin was irritated where the leads sat on the skin, including redness & some swelling. It plain hurt, I won't lie. This all has NOTHING to do with how the stim affected me however, so please don't misinterpret. Usually patients have a day or two of discomfort after surgery, but I am STILL having back pain! Having my back taped up with wires entering / exiting was just not something my body dealt well with. When the leads were removed, there was a little resistance & I was repositioned a couple times to allow the doctor to pull them out. That part didn't hurt, but I did feel pressure & a little soreness. After they were out, my back felt at least 50% better! I could bend & move better with much less pain! Sitting back against a chair was great as I couldn't do that all week! One of my amazing friends went with me that day & was so kind as to videotape the lead removal both for myself & anyone else's curiosity! (Sorry for the poor camera quality & flipping of video!)

(Ok, so I can't get the video to upload so I will try again later! Sorry!)

After the removal we took a picture later of what remained on my back for now. It's still pretty sore to touch, but much better overall. There might be a couple little scars but nothing to fret over! I also have a sore on my left side where the connectors were taped, but that's a hazard of the job for a 7 day trial!

   Now the fun part, discussing my options! It's been no secret I didn't get the coverage we aimed for during the trial. With the leads being placed at L1, it didn't work with my anatomy to help much above my knees. With that being said, and me having little pain in my lower legs during the trial, I don't feel I can properly judge the how the SCS helped my CRPS. When asked, I could only give Dr. S a 20% as far as how much the SCS improved my quality of life over the week, and I think I was generous with that number. I did not factor in my back with this as I know that pain will eventually go away. I still had a lot of trouble walking & doing everyday things due to the pain in my upper legs and hips. Still had to use a wheelchair. 20% is not enough for me to go through with the permanent SCS implant. This was devastating to me, even just to say. I think this is when the tears welled up in my eyes because it felt like failure. It felt like I lost a battle & had no direction now. This was supposed to be my miracle, my ticket to a life of having babies & doing things I used to. I was just thinking about the activities I wanted to tackle, like skiing, roller coasters & traveling! Suddenly that hope shattered as I now have to figure out what's next & how I'm going to get through each day. Back right where I was before the trial...
   Though everyone is optimistic, Dr. S & my St. Jude reps, that the paddle leads on the implant will give me full coverage where I need it, there is no guarantee. Dr. S does not feel comfortable telling me the implant will give me any better coverage than what I had during the trial. Not what I want to hear, but I understand. My internal anatomy is different & I am "special" as my reps & doctors call me often. It would be foolish for them to promise me anything. It takes only one person to ruin a doctor's 100% success rate. I think I'm starting to hate percentages after this past week. To make things easier, I have 2 St. Jude reps. A female I'll call SJ-L, and a male I'll call SJ-J. (SJ is St. Jude of course!) SJ-J even tried to tweak the programming one last time before the leads were removed just to see if a fresh set of eyes could do anything different, but no luck there either. He still feels like the implant will work for me, but the leads need to be placed somewhere between T11 and T8 for me to get the needed coverage. Here's a small diagram so you can understand where these areas are.

    So where to go from here? I've heard this question all too many times before. I had hoped I wouldn't have to face it anymore after this past week. We know the SCS implant is not the right choice right now. After talking with Dr. S, I could tell even he was disappointed with the trial outcome & sensed he felt a little bad, like he failed too. I think everyone involved felt that in some way. Here's the next options...
1) Ketamine Infusions
2) Methadone Treatments
3) Intrathecal Pain Pump
   We talked some about these three options & I'll be honest, none of them thrill me. It's all pain / opiate related and there are no more surgical treatments. I know I don't want to be a drugged up zombie & I can't be pregnant while on any of these because I personally do not believe in putting my fetus at risk of any kind. So Dr. S and my reps left the room to talk for a bit. a few minutes later, Dr. S came back in & threw out another idea that we didn't think was possible. What about a second trial? This time placing my leads higher than they were the first time in hopes we can get better coverage & allow me to truly be able to judge how it helps my pain. Most doctors NEVER do more than one trial. It is pricey & risky. Most insurance companies won't pay for more than one either. Well Dr.S is ok with it, and turns out I will luck out with insurance because we are switching companies in January through my husband's employer! Is this meant to be? I am a woman of faith & this might be God's way of telling me what I should do. I am afraid of a second trial and going through the pain again, but when it comes down to it, I don't really have any better options anyways! It's one more week, hopefully better than the first & it could still lead me to my goals. How do you say no to that? It won't be until January so I will have some time to heal from this first one. All options considered, I think I agree this is the best thing to try... again. (Title of post being a hint)
   Now that I have made up my mind on a second trial, my focus for now is getting through the holidays and having some fun. It is not going to be easy as my pain has already kicked up pretty bad in the last 24 hours, but I am trying to take it easy for now so I can get some Christmas shopping done this weekend! I had a pretty terrible night, in pain and vomiting, so I spent all day in bed today. It's helping keep the pain down. I hate being lazy & loafing around, but with severe CRPS, sometimes we have no choice. Since it is late, I shall call it a night & try to get some much needed sleep! Oh the joy when that actually happens for me! Thanks as always for reading & good night!

Day 7 - SCS Trial

   Well this evening marks the last full day of my SCS trial. My appointment with my St. Jude rep and Dr.S is tomorrow morning at 10:15am. This is when the leads will be removed and we are supposed to discuss whether or not I will move forward with the SCS implant surgery. I've been saying my goal was to have a decision on that by tomorrow, but I'm not sure I'm going to reach that goal now. Too many uncertainties and questions have come up about the implant and how it will affect me compared to the trial, and I'm just not sure for right now what I feel is best.
   As I've been saying all week, I have had extreme pain in my back and I know that has had an impact on how I've been able to judge the stimulator on my legs. My pain meds haven't even been helping with the back pain. It has been very difficult at night for me to get comfortable in bed no matter how I try to sleep. As far as the SCS goes, I haven't been able to get the coverage I need during this week which was vital in making my decision. Most of my pain has been in my upper outer legs, and I've had to just try to bare with that as my stim didn't touch there. When talking to my other St. Jude rep today, he said he thinks the paddle leads will get much better coverage, but he also feels the implant surgery will be much harder on me than the average person based on how the trial went. That's a big plus and negative all in one phrase. There's never a guarantee on any surgery and I know this. It's all about percentage for me. What percent this surgery should be successful is a BIG factor for me. We will talk to everyone at the appointment tomorrow about the lurking questions and though I don't think I will have a decision tomorrow, perhaps we will get a little closer. One of the reps also wants to play with the programming a little to see one more time if they can get any new coverage before we remove the leads. It is sure to be insightful one way or another tomorrow. Hopefully for the better. I will hopefully post more after the appointment, including my questions and their answers. Good night everyone!