OMG OMG OMG-I am 8 weeks today and still I am in shock that I am writing this. We are going to be parents-March 7, 2010! As many of you know, this was not an easy road. It was long and painful. Literally painful. I mean massive amounts of swelling painful.So let me go back to right before our BFP. We were ready to throw in the towel-but after hearing so many amazing things about Dr. Braverman, the miracle man. Let me tell you-WHAT A SWEET MAN! So caring and knowledgeable! He was concerned with my RA from our conversations and increased my prednisone to 20mg. Once we did that-BFP! I was so in shock-I still remember DH telling me "Oh, you are only two days late and you obsess every month-just wait it out". But since I have no patience, I took a test-and saw a faint line. I was in utter shock. Since I didn't believe my eyes, I took a digital that I had...and then the magical words appeared-PREGNANT!!! It was the best feeling tapping DH on the shoulder, handing him the test and saying "You are a daddy this month!" I swear, I haven't seen that look on his face since our wedding day!And an amazing thing has happened, besides the fact that my little bean is growing inside me. My RA, for the first time since I was diagnosed over 10 years ago, started to go into remission. Today, at 8 weeks, I am so thrilled to say that I am completely in remission!!! I am now exclusively working with my rheumy and my rheumy told me Friday that my bloodwork came back much better and since I conclusively do not have lupus, which was a concern that we originally had. Because I am doing so well, we decided to taper the prednisone. I am so excited to be off of this medication for the first time in almost a year! I do know however that it is likely that my RA will flare post partum. But I am not thinking about this now. I say a small prayer that I will be one of those people who are cured from pregnancy. But in the meantime, all I can think about is my little growing angel and the fact that I am going to be a MOMMY!
So, this will be a short blog.I had a feeling for quite some time that something was wrong. We were perfectly timing everything, and nothing. I had a chemical in January, and after my last cycle which was anovulatory, I decided after much thought, it was time to contact an RE. My OB wanted me to only wait 6 months, I waited longer. So, as of last night, I am happy to say that I am a patient of Dr. Braverman, who will be treating me even though I am OOS. He is just so nice, I can't say enough good things about him. I discussed my history with him and my latest b/w results from the rheumy. He thinks that my RA is causing an issue with TTC. I am going for bloodwork next week, and once we get the results, we are going to decide what to do. Dr. B felt that most likely, we will be increasing my prednisone back to 20mg and adding Lovenox. I really feel positive after speaking to him, and a sense of relief. I was very scared to venture into the whole process with an RE. But Dr. B made me feel right at home! I was so happy. I will visit with him in person when I come to NY in August. Hopefully all of the testing he is running will shed a bit of light on what is going on!
So, the past few months have been up and down for DH and I.Well, the last straw was losing my job in NY on May 15. There is a very long story behind that and for legal reasons, I cannot get into it on a public forum. Let's just say I was wronged. Good news-DH got a contract in Florida and the interviews are coming along-he is close. We are pulling through, DH, I and the cats. We are making ends meet and as of tomorrow, I will, by the skin of my teeth be registered for the Florida Bar. I guess when one door closes, one door opens. I was just blind sided by my termination from employment and upset about the situation. Originally, I was going to postpone the Bar until February, but due to this opportunity (I am receiving unemployment and I have two whole months just to prep for this test and the ethics portion on August 7), I decided to go for it-but at a price. It will cost me, after all is said and done, over 2K to take this test. I need to also run and get my disability paperwork into the Board of Examiners so that I may either take the test on laptop or get extra time for writing. I am a nervous wreck and yes, DH is trying to help, but he is driving me INSANE. I am definitely going crazy over here.So, considering all, we decided that the best thing for us was to reinvent our lives. First off, we figured the short term life on a leash and suffering of the Bar and the lack of funds to really enjoy life will pay off in spades in the future. Second, I think I might want to switch to a private firm. But I did learn my lesson. I have a disease. It will never go away. I have to live with it every day and every night. It is a part of who I am. So I am glad that DH will afford me the time to look for an attorney position that will accommodate my limitations-I have two desires-to practice law for as long as possible and more importantly, to juggle a career and my dream since a child of being a mommy. This brings me to my next journey. DH and I, along with my doctors decided to step up our TTC efforts and see a Reproductive Endocrinologist. I just received my last round of blood work back. My SED rate was 29, which isn't the highest ever, but is pretty high (that is the rate of inflammation-they watch to see how fast the blood cells fall to the bottom of a tube) and my inflammation rate was high. We did not receive my other batch of bloodwork back-this would include a very important test called an ANA panel. This confirmed that I have an autoimmune disease. But we were thrown when we read studies about patients who are trying to conceive and have trouble because of an ANA titer over 1:40. I was very frightened to find out that my last round of bloodwork showed not only a positive ANA panel, but a titer above 1:40. Tomorrow, I will post another blog hopefully with the results of the last portion of the test-my ANA panel and the new results to some of the Lupus testing-I am praying that it comes back negative. But I want to scream. I am so upset and I can't discuss it with anyone. Yet again, my RA comes along and overcomplicates yet something else. Another dream that is ruined-I always dreamed of trying and getting a spontaneous BFP and being all excited. But I won't let this get me down. Nope. I don't care what I have to do. As my darling friends Hayley (maybeamommy) and Deanna (MetsGirl07) two wonderful ladies who I credit for many great decisions and things in my life -I need to do whatever it takes to make a dream a reality. Besides my wonderful support system both here and with my outside friends and immediate family, including DH, I started seeing (well speaking over the phone) to an amazing Counselor who lives in Tribeca. She totally gets me and we clicked right away. Like me, she suffers from RA and Fibromyalgia. She knows how it feels, how it feels to be constantly exhausted, how some days, you just want to die from the pain. But she is working with me intensely, and working to help me re-invent my life. To get over the pain of the past, to cope with the fact that I have something that I cannot control but can hopefully conquer, to deal with the pain I bring on myself through my insecurities, such as my obsession with my appearance and weight, my fear of losing DH, my IL issues and my lack of self esteem.So, here I am, in my OWN house in Boca Raton. I am in a process-I am reinventing myself. It won't be easy. Every day will bring positives and negatives. But I plan on using this blog, the wonderful ladies here, my husband's unconditional love and support, and the advances in medicine to work on becoming the "new me". And I am taking strides to get there. The Bar being one. I lost 15 lbs. so far. I joined a gym and started taking Hip Hop to clear my mind. DH and I go together, which is great. I am going to work with my doctors and start my next journey-the journey to health, happiness and a baby. My goal is to be able to kick RA's butt and even though it cannot be cured, I can rule how I will live my new life. I have friends down here, and that is great. I am going to work my tush off to ace the Bar exam and the MPRE exam. I am going to rock as a great lawyer. I am going to be a great wife. After the Bar, we resume home improvements. And my other goal-to sneak fashion into my life. Once I can take the prednisone weight off, I am going to see what I can pursue in the fashion industry, maybe even modeling, another childhood dream of mine.But my first and ultimate dream-to be a mommy, to be the best mommy. So, along with the learning the exciting world of Florida law, I will be taking the next few weeks to learn what is going on with my body and the steps that DH and I will need to take to make the dream of our own family a reality. I just watched The Shawshank Redemption and one of the things Tim Robbins character Andy Dufresne said in the movie struck me: Get busy living or get busy dying.I am going to get busy living. DH and I are going out with the attitude that we are going to conquer the world, one day at a time. Life may not be particularly the best, but I have my baby, the best man alive, who will always be by my side, lay next to me every morning. I have love and I love another with all my heart. I don't want pity-I want to rise above the bad and get to the good and remind myself of the good that I have each day.And hopefully, before we know, a baby will make three. I want to be a mommy so bad, I will give anything. I don't care what I have to do-I WILL BE A MOTHER!I end this blog with a quote from maybeamommy:"I will give everything, but I won't give up"
I haven't been on for some time-things have just been crazy.For starters, I lost my job last week . Just what the world needs-another unemployed lawyer. But I am looking on the bright side-I think this was God's way of telling me to take the July Bar exam in Florida, which is what I am now going to do. Originally I was going to postpone it again because of work, but since I am unemployed, I have plenty of time to study like a crazy woman! So I apologize if I don't get on here too much-I have to re-learn 3 years of law school and learn Florida law in 2 1/2 months . I am excited though to open this new chapter of my life and I am going to make sure I ace this test. Then in August, I take the ethics portion of the Bar-then it is a waiting game to see if I passed. I am also excited to possibly explore other areas of law in Florida and maybe open my own firm one day! My goal is to become a Family Court judge and I will do anything to achieve my dreams!My DH is still looking for a job (although I think he is very close to landing one)-so we are in a tight spot and we decided it would be best to put active TTC on hold and at my OB's advice, consult with an RE for testing, since we have some trouble right now. We at least would like to continue to be productive right now. If I get preggo, we will deal (my parents offered to help), but we are not going out of our way to try.I went to see my Rheumatologist a week and a half ago. I am in a full force flare right now, but we are being conservative with my treatment for the time being-low dose prednisone, Cymbalta (for depression and fibromyalgia, which is my component disease with the RA) and exercise. I am waiting for the results of my bloodwork-hopefully we will have a path at that time. DH and I are also going to see an RE once we get back to Florida next week at the advice of my rheumy and OB. They want to rule out any issues with DH and check to see if my RA could be interfering with my ability to conceive. I am keeping optimistic at this point and I really think things will fall into place very soon for us. I think once DH lands a job we will conceive. But no matter what, I am grateful for my wonderful husband and I miss him terribly (we have been apart for almost 3 weeks). I am very excited though that he is coming into NY tomorrow night! We have my nephew's Bar Mitzvah over the weekend, so we will be busy busy. Last weekend, my little brother graduated Law School summa cum laude (I am jelly-what a smart kid!)-and it was a great graduation because not only was my baby bro receiving his law degree, but I was up on stage (I am an alumni of his law school, Hofstra Law) and I got to participate in the ceremony by performing his doctoral hooding during the hooding ceremony (my mommy was so proud ) So, this past weekend and the upcoming one are very special for me! I am excited to go home to Boca-I miss my kitties and my house so much. I am also excited to get back to studying and to the gym. I also just bought NYC Housewives Bethenny's book Naturally Thin and already lost about 7 pounds from following it! So, I am going to work hard to get back on track and get my RA in control!
I have been meaning to blog again, but I just have felt weak, icky and tired and not in the mood to do so. I just felt like I should write while I felt slightly inspired to do so.So first off, we are on the 6 month of TTC. AF is really late and I am getting BFN after BFN. I just need to know and this is connected to my RA.My RA was doing well for awhile and I was able to taper the prednisone to 10mg daily. But it decided, like usual, to come back with a vengeance. A lot has been going on. My disability (short term) is almost over and I am due back at work. Am I ready? No. Do I want to work-yes-I worked so hard to get through college and law school and I don't want my mind to rot.I have been sleeping over 13 hours a day. Sometimes the pain gets so bad that just the loving touch of DH makes me cringe in pain and scream at him. And then I feel terrible. And with the pain comes the depression and anger. DH is desperately trying to find a job in Florida, where our home is. My job is in NY. They kindly interview him and give him all of this garbage, like outsourcing, overqualified, and filling positions from within. His business in NY is dead. So I am going back to NY in 2 weeks in pain without my DH or my two cats, which are my babies. I am the sole supporter of our family, and that is not a good thing, because I don't make a lot. What scares me most is the fact that I am getting negative feedback from my job. They do not want to make accommodations for me. Instead, they want to push me to my limits in hopes that I go out on long term disability, which means that I lose my position and my benefits and they can fill the position with a new attorney who has their health and their energy. I know that there are protections for me due to the Americans with Disabilities Act, but I worry that they are going to watch me like a hawk for the tiniest little slip just to get rid of me. Then DH and I will have nothing. It scares me.A former shopaholic hasn't made a purchase in months because every day, something new has to be paid. I guess that is being a grown up. I pray that through the clouds, a little glimmer of sun will peek through and remind me that this is all temporary and my family will be reunited. I cry myself to sleep, cry during the day hysterically at the idea that the few things that I take comfort in, like DH's touch and his smell, my furbabies, won't be there for me. I am going to be with my parents, but my father gets angry at me when I cry. I am not angry in the least at DH-I wish I could help him. I see the pain in his face and the frustration that he can't get a job, nor can he make my pain go away.I spoke to the rheumy today, and I have to go for bloodwork to see what is going on with my missing AF. We can't do anything after that. And then he sat on the phone with me and explained to me how ill I am. I have RA and it is severe and non-responsive to every protocol, and even one put me in the hospital (and gave me more medical bills to pay). He said I am sick, very sick. I have fibromyalgia as well, and nothing is easing the pain. I am truly trying everything that I can possibly think of. I work out, force myself to eat right and swim. The swelling is back with a vengeance and so is the pain that accompanies it. I can't get right out of bed because of the stiffness that lasts and lasts. And then there is my chronic depression and anxiety. I am scared of the immediate future and what it holds. I am scared that I will fall asleep driving. I am scared I will faint. I am scared I will cry in front of my colleagues-all of which have been unsympathetic and un-supportive, except for two. I found out that one of my so-called "friends" at work tried desperately to spy on my to somehow show that I am faking. After she knew EVERYTHING I was going through. This is the toxic environment that I am stuck going back to. My doctor is fully supporting my going out long term, but I worry about what that will do to my future. I am so sick and sad. I don't know what to do anymore. I pray to God every day. I wonder-does he listen? I just want a sign that things will be temporary and things will get better. Just something. We are basically out of treatments that we can do right now. I feel like I am stuck in a h e l l of my own making-I try, but nothing makes me feel better. Nada. But I won't lose hope. Hopefully my next blog will be better. I just need help and I don't know what to do anymore. I am going to see a therapist once I go back to NY, but I don't know anymore.
So, I must say, coming to Florida was one of the best ideas my rheumy had!After my debacle in the hospital with my reaction to Remicade, we decided that we could either start me on two different infusions, one called Orencia and another which is pretty new and used in cancer patients (the name slipped my mind-Rotuxin I believe)-both are Class C medications. Or we could continue on prednisone in hopes that our baby dreams come true. We discussed options and decided that the warm weather, aqua therapy, and tapering my prednisone would be the best bet for me and my future baby. I am pleased that I made that choice. It is not by any means aggressive and if we were not trying for a child, I would get back on methotrexate and Humira (the most successful protocol I ever was on). But to me, having a child is so important. I don't know how I will feel next Sunday, let alone 10 years from now and it is so important to me to be able to be a hands on mom. Right now, the damage that has been done is done. I can't do a thing to change it. I am working on some hand exercises, as my range of motion is poor as well as my strength. Remission is going to be a long road, but I WILL get there. So, anyone who knows me well knows that Real Housewives is one of my favorite shows-I watch all of the seasons, but NYC is my favorite. I discovered that Jill's daughter also has an autoimmune disorder, as well as Ramona's daughter. I was so happy to hear on the last episode that they were planning a benefit to support Rheumatoid research. I know this is kinda silly, but I actually wrote to Jill to thank her, because RA and the autoimmunes are not researched anywhere as much as some other diseases, and being a patient who is about to hit a wall with protocols, I would love to see some advances, not just for me, but for everyone who suffers from this disease. Hopefully I hear back!I will continue to keep everyone posted! Thank you for reading!
When I was in the hospital, they sent me the most beautiful flowers. True friends are hard to find and I want everyone to know that these girls are the best and I wish them everything good in life My mother took pics-I will upload them once she sends them! So, a public thank you to my girls!
So, I haven't been on in awhile. It has been a crazy month.We are on month 4 of TTC now. I had a terrible February. I was all optimistic about my Remicade treatment. Turns out, I found out in a very bad way that I cannot take it.I had my second infusion right after V-day. I knew something was up. I was complaining to the nurse that my tummy hurt, that I couldn't move, and I had terrible chills. She didn't listen to me and kept going. My mother said I was moaning in my sleep.After the infusion, I couldn't move a muscle. My sibs and parents got me on the couch. At about 2 am, after taking some serious meds (the pain was unbearable), I took my temp-and took a double take. I haven't run a fever in about 5 years. I had 104! I couldn't roll over on my own or even lift my arms over my head! To top it off, AF arrived and I had to basically crawl to the bathroom to tackle that problem. My parents took me to the GP the next day-I was hobbling on a cane, had horrible chills and felt like I was in a parallel universe. They rushed me right to the ER. There, we discovered that I was running 104 still and my BP was 90/70 and dropping. They started me on an IV drip with a morphine pump, which did little to help. That night, I was admitted into the hospital (which was good timing since my job thinks I am faking my disability). I needed a nurse just to go to the bathroom and they switched me from just morphine to Dilaudid, which is a little stronger. I was admitted for three days. At first, they thought the flu or strep-both negative. I was on IV antibiotics and painkillers. This was one of the scariest experiences of my life. Finally, their rheumy and my rheumy spoke and determined that it was a Remicade reaction. So, they started to pump my IV with steroids, which was the first time I actually felt relief. I was released the day after. The docs told me I am severely allergic and thankfully we caught it, because I could have gone through organ failure .To add the cherry to my month, we basically had no where to live in NY. We were finding ourselves broke and no one wanted the cats. My friend who we were supposed to rent from reneged at the last minute. So, we decided to stop draging our feet. We are now in Boca, in the house we own. I already see a difference, which is great. I am still swollen and I still have pain, but it is NOTHING like NY.My doc and I spoke and we decided that my protocol will be steroids, aqua therapy and getting pregnant (easier said than done!)But, all we can do is pray and be thankful for our blessings, right?
I feel like such a complainer. I used to be so upbeat and positive and I hate that it was robbed from me. I am praying so hard that my next infusion starts showing results. I can't live like this. My ILs are nightmarish-they think I just want to be lazy and out of work forever. They don't get it. My dream is to become a judge and a mentor to others with this disease. I know I could have it much worse.This week has been awful for us. I think of when I was walking down the aisle on my wedding day, the best day of my life. I never could have guessed how bad things could get. I know I am not alone-this economy scares me terribly.But why do my ILs think that my life goal is to mooch off my DH? Like I went through three long years of law school and debt to never work again ...I try everything, and it is never good enough. I absolutely plan on returning to law. I am just in poor health right now and my doctor and I thought it would be best if I took a step back and rested. RA takes the life out of you. I feel like I am failing my DH and my family-I feel like an utter disappointment to them. And the emotional pain is worse than the physical pain at times. I just want to sleep some days and never get out of bed. So this week's developments were dramalicious of course. We were renting my SIL's basement and she made it abundantly clear that she wanted her basement back. She would come down and nag and nag. So we thought we got lucky when a friend said we could rent his top floor. I thought this was the beginning of good things to come. I was wrong. We get here and he decided that he is renting the top floor to his girlfriend (who is one of my best friends and I am blessed to have her)-he wants us out ASAP. So I made the executive decision to fly with DH and the kitties to our house in Boca. We are making it by the seat of our pants. I hate living in a state of fear. Luckily we have our benefits and my pay coming in during my disability-but it is temporary. So here starts the drama-I posted what I thought was private (SIL is not a facebook friend) that she basically kicked us out (which is what I consider, thinking what she has been pulling. She saw it somehow and freaked. I refuse to call or apologize to her, because it will start more trouble. I really meant the message to go to a friend to see if she could help us out right now. So much for that. I deleted the comment, but with the ILs, that will go around like a wildfire. My ILs treat DH like garbage and they are so convinced that my goal is to sit at home and make him work his @ss off to support us. They don't like me and I've tried everything I could think of. Everything. Nothing seems to work. I want to cry and scream. I pray every night and not just for myself but for those I care about. I love DH so much and he is in a deep depression. I feel helpless. I want to protect him and I can't and it kills me. I know life isn't always roses and peaches, but when will we get our break? When do we get our chance to succeed?Thanks for reading. I am so lost. Any advice or hugs would help. I feel like we are at the bottom of the barrel and there is no light at the end of the tunnel. Do my ILs not get that I would do anything just to feel well? I would work 90 hour weeks without sleep if God would take this pain away. But that is not how life works. I think I have to cut his family out of my life as much as I can. I am at a complete loss.
I think the Remicade might be working-my swelling in one of my hands is down a slight bit! I am so happy! I am now tapering my prednisone down. I was on 60 for about a week and I tapered to 40 today-goal is to get to my dose of 10mg.So, we are also excited because we are moving to Sag Harbor! We are now with SIL in Commack, but the situation here is not the best and she wants her basement apt. back for my nephew to have his friends over. Our dear friend is giving us a whole top floor in his gorgeous Sag Harbor home-I even get a Jacuzzi tub, which is wonderful for my RA and my ancillary back issues. I can't wait to soak with a nice glass of wine, candles and relaxing music (i know it sounds corny, but I am so happy). To make matters better-DH has a two week contract in NJ, which will really help ease finances on us, especially since I am on disability now. So, I have commenced Operation Recovery. BTW-I am open to any thoughts, suggestions, ideas, etc. We are now in our 3rd 2WW, but I won't be upset if AF comes this month-I can get my bone density scan done and hopefully a lumbar epidural to ease my back pain. This way, hopefully I can get back to physical therapy. Both procedures are full of x-rays and cannot be done if I am pregnant. Of course, I am still hoping we get a BFP-I just won't be devastated if I don't. Right now, recovering and managing my diseases are top priority so I can be the healthiest and best mommy possible with the healthiest baby possible.I think these things are signs of good to come and hopefully, I will be posting before I know it with some happy news!
WHOA! A lot has happened in the past two weeks.For starters, I am a year older. I turned 28 on Saturday, January 31. It was bittersweet. I love my birthday, and I do have blessings to celebrate, and it made me realize how easy it is to lose sight of the good when everything is not going the way you hope. My RA and my back did not take a day off. But DH, who is incredible, took it very slow for me. We did things at my pace. It was nice. I was tired, we rested. He have me an incredible massage. He helped me with my hair and to get dressed. I felt somewhat human.Superbowl Sunday was very painful for me. Literally painful. I was taking a sharp turn for the worse. And we were at the IL's and I hide my conditions from them because compassion and understanding are two qualities they sorely lack. My back was hurting and swollen. My rings were stuck on my hand. I couldn't say a thing in fear of a reaction. I got to kiss my baby nephew's head, and that was so great.And then, I took a nosedive. I woke up 6 times that night. Shooting pains in my hands and feet. Completely swollen. Thank goodness I struggled and got my wedding rings off the night before (and that feels so weird to me). I tried a hot shower and thought I was going to vomit from the intense stiffness and pain. I called the rheumy and they summed it up pretty quickly-1. Upping your prednisone to a very high dose (60mg)2. Your infusion takes precedence over EVERYTHING. You need the treatment3. Call into work and tell them we are signing you out. You are progressing for the worse and we can't have this.So, I cried and cried. Poor DH had 2 hours of sleep. He called in for me. I got a not so nice reception. I cried again. I am not looking for a paid extended vacation, I am not looking to hurt anyone, I enjoy my job. Why do they make me feel so bad? It hurt.I was given pain meds and I slept the entire day away. I was completely incoherent.My bureau chief calls me the next day to "scorn" me on not calling HR right away-I thought I was to wait until I was at the infusion. I made an honest error. I guess I understand, but still, do you have to make me feel so terrible? I feel bad enough. For people with compassion, I feel such a void.And I am starting to learn who your friends are. Some of my work friends called to check up and see what they could do to help-their love and caring is all I wanted. I said, just keep in contact-that's all I want. Apparently the whispers have started. I didn't ask for this. Any of this. I would give ANYTHING to feel better. I would work a 90 hour week if I could get rid of the RA. I wish they would understand that.I have a friend/lawyer who is helping me through the disability process. This felt like such a loss for me-I tried so hard and fought to try to stay in, to make it through. I lost. But as a dear friend told me, it is a blessing in disguise-this might just help us with our TTC journey, because the less stress will help my ailing body. Pregnancy is a relief I cannot wait for-it means a remission! I want a baby and a remission is a sweet extra for me!I had my first infusion yesterday. We started the day early to get into the city. I drank two bottles of water, because I have tiny veins. It took three tries, but we got the IV started. We had a slight snafu because the connection started leaking, but overall, it was a success! I am hoping this is my key to recovery! Next week is pain management to deal with the back and the week after is my next infusion.I am optimistic. I am going to use my time off effectively-to heal mostly, to rest, to get my body to be healthy. I am adding more veggies, raw veggies and fruits to my diet and cutting inflammatory foods from my diet. I want to begin PT again. And I will use this time to study for the Florida Bar! This is really therapeutic for me-soul searching and recovery.It still just hurts because I gave my heart and soul to that job and I was hurting and struggling and they saw it and they could care less about me. They look at me as an outsider, like I would intentionally do anything just to lay around. But I decided this is my new motto to live by:"Live a day in my shoes. Then you can judge me. Until then, watch what you say. Karma comes around!"
I have been in excruciating pain with major swelling. I am struggling to do menial tasks, like showering. Life is getting really hard! Of course, with this in mind, I called my rheumy today. She is very concerned because I have been on high doses of steroids now for over 3 months. I do take lots of supplements (i am adding aloe and ginger), but the prednisone weakens bones.I am so trying to make it through work, which is becoming a horribly tiring task for me. I have never felt this bad in my life. So, she is upping my steroids again to 40mg (hello food tomorrow), and my Remicade infusion is now scheduled for Wednesday, February 4 at 10 am. Which means I have to be in the city super early. It will be a three hour process. Hopefully I can nap during it! I am also going for a bone density scan and I need a calcium infusion, since the prednisone is taking a hit on my bones.Next will be pain management, because it looks like another lumbar epidural is in my not so distant future.I might be having to leave work for awhile-not a thrilling prospect, but I think my disease will respond better if I reduce the stress level MAJORLY.So, that's today's update. I am now enjoying my heating pad very much!
This is short-just wanted to let everyone know-my Remicade infusions were finally approved! However, due to work constraints, my first infusion is not until February 12. I have to go to my doctor to get it done so they can monitor my vitals and react in case I get a reaction. I am sure everything will be fine though (I am hoping).Until then, we are in Prednisone H E L L -I hate the stuff so much, but I need something, so oh well.But yay to good news!
I am writing this in a blog and not in a letter, because I know that I want him to see this when he is older. It is something my ILs would flame me for, so I decided to write it here.Dear Harris, my wonderful baby nephew,I write this to you today, January 27, 2008. You are one week old today and tomorrow is your bris.You didn't enter the world as easily as other children. You were born with medical problems. Your arms and legs are not developed like your head and spine. Your heart is enlarged and you have a problem with your liver. You have sleep apnea and need an alarm to get an adult to tend to you if you stop breathing. Some people would call this a birth defect, making it seem you are something short of perfect. I just want to tell you right now-YOU ARE PERFECT TO ME!When you read this, I pray to God that you are in full health and have no disabilities or issues. But if you do, I don't want you to feel alone. You are not alone. Your aunt understands you, knows what it is like to live day to day with a disability. Your aunt loves you unconditionally and will be here to talk if you need it.If you have a disability, you will unfortunately encounter the same rude, inconsiderate, and downright mean people who will try to judge you or mock you for having a disability. They may joke with you and think it doesn't hurt, when it tears you up inside. Don't let these people make you feel less-they are worthless. You are worth everything and you can reach the stars if you want to. I had to deal with those mean people too. And they made me cry and they made me feel like less of a person. Try not to let them do that to you. You can talk to me and I can tell you all about what I dealt with and how I managed to get through my day with stupid comments and dirty stares. Ignore it, work harder, prove to those weak people that you are better than them.And always know, you have my love.Love forever, Your Aunt Michelle
I was pondering life as I edge in on my 28th year on this earth.There are so many things I am grateful for, and so many blessings God has granted me.I have a wonderful DH. He is my rock. He never asked to have to deal with a woman with so many medical issues, but he does so with such care-I am in awe of how lucky I am to have married such an incredible man.My family is so supportive and wonderful-I have put them through the ringer in the past and they never fail to stand by my side. For that, I am blessed.My wonderful kitties-they love me so much, and I am so lucky to have found two babies that know just when Mommy needs some TLC.My nieces and nephews love me to death and they are such a source of happiness for me.But this morning, as my temp dropped below coverline, I cannot stop crying.A year ago, as newlyweds, things were just so wonderful for us. We rented a gorgeous home in Hampton Bays overlooking the water. I slept in a real bed, not the stupid air mattress I am stuck uncomfortably on in my SIL's basement. I stupidly let my job know that I was planning on moving to our home in Boca-I should have kept my mouth shut. I want to leave there badly at this point as I am relegated to doing nothing meaningful anymore. DH is trying so hard to find us something, but benefits are a big issue for us with my RA, and especially TTC.We do not want to put our plans on hold for personal reasons.Why does this have to be so hard? How did I go from having everything to living by the string of my pants.Somethings gotta change. Quick. I am praying, but I wonder if God hears me.I woke this morning with back spasms-means I will need another epidural, because if I feel badly in Florida, I can't imagine how bad it will get in NY. To top things off, we have unlimited sick days-so they say. But because of all of my health issues last year, I was out more than I wanted to be (nevermind that I kept working from home, but that apparently doesn't mean anything). I need my meds approved, and it is just not happening. I want to be happy again. I want to get out of this hole. I want to see the sunlight again and wake up with a positive attitude once again.Please God, listen to my prayers-I am desperate!
So, I have internet in Boca! Woo Hoo!I met a lovely woman on the auto train on the way down here. She was telling me about her diagnosis with RA 10 years ago. She also spoke to me about her 14 year old granddaughter who was recently diagnosed with JRA (my original diagnosis).We spoke about denial-it is hard to face the fact that we will be stuck living with this "creature", this disease that eats away at our joints day by day.We discussed the medical protocol-how in my 10 years, I tried and failed many therapies, both Western and Eastern. How I am miserable waiting for my Remicade to be approved. Worst is the wait I will have until my first infusion-I have some sort of infection/bronchitis and the biologics (Humira was one, so is Remicade) weaken your immune system and can bring on full blown infections. And we discussed how rude some people are-we don't look disabled, but we are. No one knows what is is like not to be able to just get out of bed without a fight, to take a shower without feeling like you ran a marathon, etc. I get looks all the time-so does this lady. When our disease keeps us in bed all day due to the horrid fatigue, we are labeled as "lazy". I want to scream at these people and tell them what it is like-how I would give up my handicapped permit to button a shirt, how I would love to work 12 hour days at my law practice and still be able to hit a gym. Forget it, how bout enough energy to hit a gym? Florida is better-the cold in NY just makes everything worse.Her granddaughter is in denial. I was for a long time as well-I refused my meds, slept on the couch every day after school, later after work, etc. I told her that she could talk to me, how important our meds are! TTC is bringing new struggles for me-the prednisone I have to keep myself on is causing horrible swelling and bloating. I look terrible, I feel terrible. My face is puffy, my clothes are uncomfortable. I will undoubtedly have limitations, and I will deal. I just wish people would sometimes think before they speak.Don't judge me-you don't know how I feel.Don't make rude comments-I wouldn't wish this on youBetter yet-stay far away when you have even a little cold-because of my medical protocol, your cold will be my walking pneumonia (shout out to the woman who brought her sick kid to work!) I wish people would open their minds sometimes and think! One day perhaps....
I am sitting in my office, wanting to really hide under my desk and cry. I feel like a whiner and a complainer.I look like I didn't put one iota of effort into my looks today.I can't make any phone calls right now, because the thought is disgusting me. Why do I have to listen to other people today, when I am the one who needs some listening to?So here is my status for Jan 13, 2008. 7DPO. Birthday in 3 weeks. And feeling like instead of turning 28, I am turning 80. My bloodwork came back normal, which is good. (Well, for TTC purposes). RA is a very confusing disease in the fact that your visible symptoms might not come up in your blood.My doctor is such a sweetie-they are working on getting my Remicade authorized. Bad news-we are going to 40mg of Prednisone. Which means I eat anything that is not pinned down. There is nothing else we can do for the pain and swelling, and the fatigue. I can't get out of bed. I can't shower or dress on my own. It is humiliating.I pray that our dream child is conceived soon. Not just for the wonders of motherhood, but selfishly, maybe I can get some relief for the first time in 10 years.I am exhausted. I want to give up.
So, I officially failed on the last DIY injectable available. They were waiting to fail me, and finally did today. I am swollen beyond belief and the bed is my favorite place to be (which is not normal for someone who in her head would rather be up and doing things). I can't deal with the constant pain, swelling, inability to perform normal tasks, like buttoning a shirt, and the excessive sleep!So, we move on. I am going to be starting a new drug called Remicade. The downside-it is a 2 1/2 hour IV infusion that I have to go for once every two weeks. If I improve, they will spread them out more. The side effects are the same-low immunity to whatever is going around, increased risk for tuberculosis, etc. But it is safe for pregnancy, which makes me pleased. I am a little scared because I have impossibly small veins. So I will be drinking a LOT of water on my infusion days! I don't know what to expect or what to do for those 2 1/2 hours. Due to my veins, I have to go to an infusion center, and I hoping I get internet there!The other thing I was unhappy to hear-I will be on prednisone until I get a BFP. I hate prednisone with a passion-it can cause kidney problems and my face looks like a chipmunk! It also tastes icky (I took it at 7 and I can still taste it ). We are limited on options because many of the drugs, including the primary drug used to treat RA, methotrexate, are Class X. But I want a family, so you do what you have to, right?In the office, DH looked very upset. He said very little. Not like him. We walked to get dinner and I asked him what was up. He told me that it kinda hit him how serious my disease is. How I don't respond well to more conservative treatment. To watch his wife hooked to an IV. But now he is really on board with getting the ball rolling on our TTC journey-this is my chance at remission, for at least a short period of time! Only time will tell I guess. I pray that this will work. I pray that they will make my disease inactive. I want to be a hands on mom and I don't want that to be pulled away from me. I am genuinely scared sometimes. But, all I can do is pray.
Well, I love this site, and I think this is a great place to talk about things and learn from each other.Lemme start. I am currently 27, I will be 28 at the end of the month. I was always one of those kids who was always motivated in my head, but never had enough energy to do anything but nap for three hours at a time on my parent's couch. I was tested for heart conditions, diabetes, hypoglycemia, etc. Nada. I was achy and sleepy. My fingers swelled. I felt like a kid trapped in the body of an aging woman.Finally at around age 17-18, I was diagnosed after a bout of walking pneumonia. I was in school and working full time. I wound up coughing so hard that I ripped a muscle. It didn't heal on its own, and finally after a battery of tests, I was diagnosed with Juvenile Rheumatoid Arthritis. Fast forward 10 years, my JRA became full blown RA, and I failed on pretty much every medication. I am now up to injectables. I am on Humira, and it hurts like h e l l to take! I failed my first injectable, Embrel. I was doing better on a combination of a drug called methotrexate (used originally as a chemo drug and also to dissolve etopic pregnancies) and Humira. I've had a bad run the past two years. Two months before my wedding in November 2007, I was diagnosed with a condition called uveitis, which is an inflammation of the inner eye, which can cause blindness. This was attributable to my RA, which led to the diagnosis of systemic RA. Last year, the RA spread into my ankles and toe joints. Not great for a shoe-aholic, but what can I do. I have a separate back issue, but that I am not getting into right now.I had to stop the methotrexate because DH and I finally decided to start a family. The drug is a Class X and super dangerous to an unborn child. So, as summer turned to fall, my flares started. Once winter started, the flares turned worse.I spent the whole weekend in bed from the exhaustion of the RA and the intense pain in my hands.So, what kills me is the lack of insight those close to me (not DH, but others) have about my disease. No, diet does not help. Neither does exercise. I can take a million supplements, accupuncture, you name it. Nada. It is an autoimmune disorder. None of the above cures will tell my immune system that my joints are not foreign invaders. To make matters better, normal tasks become painful chores. Forget about the 30 minutes to make it out of bed. DH has to help me shower and dress during a bad flare-I can't squeeze a bottle or button pants. Zippers are tricky. I don't like to hold things, because my hands will drop them. I want to be a mommy so bad it hurts. Pregnancy will likely put me into remission. I will likely flare after giving birth, but I am willing to deal to have my own baby. I am scared. Scared that if I wait too long to have a child, this will get worse. I want to be an active mom, and I refuse to let this get the better of me. Ugh-thanks for hearing me out today!