I'm getting nauseous just thinking about it. I'm starting to wonder if I'm ever going to be able to get off this ride. I know that a lot of people suffering from Rheumatoid and Lupus deal with people asking them why they are hurting and have to deal with people judging them based on a serious lack of understanding. I am blessed to not have that problem in most of my daily encounters. I'm in nursing, which means that my co-workers understand the disease process and they do so without feeling sorry for the 23 year old inflamed chick. For the most part my family understands and if they don't they are smart enough not to say anything to my face. In this instance I am my own emotional enemy.
I have always tried to stay active and try new things, but it is more difficult than ever to stay active. I'm trying to find new hobbies to stay entertained and busy. All I have so far is poker. I'm getting better. I'm not as good as the people I play with but it works well for me and the disease. I can get good at it and I can do it as often as I please, but I don't enjoy putting up real cash to do it. We are in a recession, it just seem wasteful when I lose. I've also started learning yoga poses on my own with a sweet app in the 'ol iPad. The only thing I totally hate about yoga is that it is so hard! Those people on t.v., even the regular people I've watched in classes make it look so easy. Well let me tell you first hand...It isn't easy. I'm going to keep trying though and even sign up for a couple of classes in hopes that it will become easier and in the end I will have a smokin hot body! Though the most punishment I recieve from my enemy is learning to deal with the uncertainty.
There always has to be a plan. If it must be done, there must be a plan. With my days being as crazy as the weather in the Midwest, it becomes really hard to have an effective plan for the day. How am I supposed to make plans for the future if I can't even make a reasonable plan for one day? I hate the feeling of being unprepared. I've come to the understanding that we get thrown curve balls here and there and you just have to deal with them. What are you supposed to do when everyday is one big game full of splitters, curve balls and strike outs (GO CARDS!)? I don't know what to do and since I'm usually already super tired anyway crawling in to my king size bed, turning on some Law and Order and going to sleep seems like the easiest and best thing to do. I know I'm just running and this is the perfect way to not think about it. But I'm not sure how to feel and I'm realizing think that I want to live in my "RA Reality".
Hopefully soon I can come to my senses, really get on board, become more flexible and really think about the next steps im going to take. Ultimately I'm responsible for what happens next and I should be prepared. As I make these uuber dificult steps, I'll keep you posted.
Monday, October 24, 2011
Tuesday, October 18, 2011
Keeping a journal makes me feel like a Slave
SLAVE?! Yes, I know a little dramatic, but I'm being forever serious. Like I said in my previous entry, that when I was in school I stopped keeping a journal and even attempting to keep track of the disease in any way.
Recently I have been on the climbing slope of my flare bell curve. I decided that I would go ahead and keep track of the flare day by day with the memo app on my iPad. I find it easy to use when my hands hurt because I only need to touch it lightly to type, unlike my 17" dinosaur laptop. Typing on that thing in flare feels like I'm tyring to break my finger tips off one key at a time. My most recent 12 hour shift at work was difficult to say the least, but I had my iPad attached to my hip so that I could make sure that I noted changes and any self treatments. I decided that my the days that I'm in a flare I should keep more detailed notes so that when I get insurance and an appointment with a doctor (hopefully) we can learn to recognize triggers, auras or a cycle. Also because I may not have a doctor for a good long while, so when I do see a doctor I will have day by day proof of flares and pain. I'm not half steppin with these doctors anymore. I'm going to start being just as aggressive with doctors as this disease is with me.
They walk in stare at their notes, ask the most generic of questions, then they decide that they would like to squeeze your already painful, stiff joints. Write the fastest generic prescriptions and run out of the room. No 'How are you feeling today?', 'Are you having any concerns?', 'Have you already done a treatment that HAS NOT worked for you before I prescribe you all the same crap?', and my dream question....'Is there anything that I can do to help you?' Oh, it feels good to dream!
Even though I know I keeping a journal is for my own greater good, being so detailed with my notes along with the actual flares and what not, make me feel like a slave to the disease. Being able to flip though pages and pages that equate to days and months almost makes feel hopeless. I sit back and ask myself when will it end? Will this ever even out and be controlled? This hopelessness is cyclical. Because keeping the journal kind of makes me depressed, I stop keeping it, then at doctors appointments I have no real hard evidence to show, in return I have to rework my way up through the same treatments that didn't work before. Go figure?!
For now I guess I am a Slave to RA. I'm a serving a life sentence strapped to my iPad, unless I get off early for good behavior. : ) I'll keep you posted.
Recently I have been on the climbing slope of my flare bell curve. I decided that I would go ahead and keep track of the flare day by day with the memo app on my iPad. I find it easy to use when my hands hurt because I only need to touch it lightly to type, unlike my 17" dinosaur laptop. Typing on that thing in flare feels like I'm tyring to break my finger tips off one key at a time. My most recent 12 hour shift at work was difficult to say the least, but I had my iPad attached to my hip so that I could make sure that I noted changes and any self treatments. I decided that my the days that I'm in a flare I should keep more detailed notes so that when I get insurance and an appointment with a doctor (hopefully) we can learn to recognize triggers, auras or a cycle. Also because I may not have a doctor for a good long while, so when I do see a doctor I will have day by day proof of flares and pain. I'm not half steppin with these doctors anymore. I'm going to start being just as aggressive with doctors as this disease is with me.
They walk in stare at their notes, ask the most generic of questions, then they decide that they would like to squeeze your already painful, stiff joints. Write the fastest generic prescriptions and run out of the room. No 'How are you feeling today?', 'Are you having any concerns?', 'Have you already done a treatment that HAS NOT worked for you before I prescribe you all the same crap?', and my dream question....'Is there anything that I can do to help you?' Oh, it feels good to dream!
Even though I know I keeping a journal is for my own greater good, being so detailed with my notes along with the actual flares and what not, make me feel like a slave to the disease. Being able to flip though pages and pages that equate to days and months almost makes feel hopeless. I sit back and ask myself when will it end? Will this ever even out and be controlled? This hopelessness is cyclical. Because keeping the journal kind of makes me depressed, I stop keeping it, then at doctors appointments I have no real hard evidence to show, in return I have to rework my way up through the same treatments that didn't work before. Go figure?!
For now I guess I am a Slave to RA. I'm a serving a life sentence strapped to my iPad, unless I get off early for good behavior. : ) I'll keep you posted.
Sunday, October 16, 2011
Introducing...Mrs. Jessica Sloan
Yes! The rumors are true! October 1, 2011 my fiance and I were wed! It was a beautiful day after a lot of stress and drama. We did it and couldn't be happier. We celebrated our day one week and one day after I graduated from LPN school and we moved into our new place. A lot of you may know of my previous residence...with my MOTHER-IN-LAW. We are so happy to be in our own place again. It makes a difference and is so nice. Even though we are still in our honeymoon phase, my RA has not been on the same schedule. I know what you're thinking. "Well, Jessie that's you won fault you over did it!" And I say to that SO WHAT?!? But seriously, I knew that after my last couple days of school that I was going to flare either the day of or after graduation. I just figured we would try and get all these things done if I'm just gonna flare anyway. And boy did I. It went in waves all the up to the wedding day. By the end of that day I was just putty. (It was like 50% RA and 50% Champagne)
I have started working as a GPN (Graduated Practical Nurse). This is a new exciting chapter in my life and I'm finding it hard to keep up. I'm working 12 hour night shifts. I like the shifts because I'm not missing quality time with the family and because I only work 7-8 shifts a pay period, instead of 5 or 6. Its great, but by the end of the night I can hardly move. I'm hoping it won't be this way forever.
I thought that I had come to term with my diagnosis and it turns out that I really haven't. After starting school again and losing my health insurance, I kept my focus only on finishing school. I stopped journaling, doing research and being active in my online rheumatoid support groups. Instead of dealing with the flares and taking care of myself, I just became angry. Looking back at my reactions now I must have looked like I was trying to run in muddy swamp water. Thinking that I was moving quickly and making progress and getting things done but really just digging myself deeper. Deeper in my disease in this case. I think I do need some face to face support to help come to terms with everything. I think I'm still very much in denial. When people ask about why I'm limping or don't feel well and I have give explanations, I smile and shrug it off. In my head I say it aloud, its there and then it rolls all the way down to my feet and I kick the thought away like a huge hairy poisonous spider. When I'm in a flare I just try to watch as much Law and Order as I can and sleep until I can't sleep anymore, just so I cant find time to think about it and sulk in my pain and ickyness. I'm going to get back into the groove of things I hope. I plan to remove myself from this cloud of denial soon... with help from my Husband! I'll keep you posted.
Wednesday, August 10, 2011
I'm getting married?
Monday, July 25, 2011
Indifference
Ugh!! I hate having this feeling. Right before I'm getting ready to start a flare...I get this feeling of indifference. I can't really make decisions. I just feel like sitting and staring into space. I feel like this for a good 6 hours then all of a sudden I have a migraine and I'm dizzy. When I first used to have these feelings I blew them off as possible depression or the downward end of a stressful week. Now I'm in much less denial and have learned to see this as my flare 'aura'. Right now I'm in the migraine, dizzy phase.
My fiance is hilarious! I try to let him know these things are coming and he's just lost.
I say : I don't feel well.
He says: Well what's wrong?
I say: I just feel like poo and ugh-ness.
He says: Well what does that feel like?
I say: Ha ha ha! I hate you!
Anywho, that is how I'm feeling right now. I'm hoping that I can plot against it. I'm going to attempt to get some extra rest, walk extremely slow, give myself extra time to gaze into space. I will let you know if the tactics work.
Btw..I really need to get a better camera so I can attach more pictures. I will attempt to make them artsy-fartsy for ya! Yeah!
My fiance is hilarious! I try to let him know these things are coming and he's just lost.
I say : I don't feel well.
He says: Well what's wrong?
I say: I just feel like poo and ugh-ness.
He says: Well what does that feel like?
I say: Ha ha ha! I hate you!
Anywho, that is how I'm feeling right now. I'm hoping that I can plot against it. I'm going to attempt to get some extra rest, walk extremely slow, give myself extra time to gaze into space. I will let you know if the tactics work.
Btw..I really need to get a better camera so I can attach more pictures. I will attempt to make them artsy-fartsy for ya! Yeah!
Sunday, July 24, 2011
Under Construction
Romantic Comedy's
That is what I think about the relationship my fiance and I have together. I never though that when me and fiance met almost 6 years ago, that we would be together today. I never thought that I could find anyone to put with Normal (Ridiculous) Jessie...let alone Crazy, Flared Up Jessie. I feel so lucky, he takes such good care of me. When I was first diagnosed, I was ready to completely remove myself from the relationship. All I could think was, 'Who wants to be on the other side of this crap for the rest of their lives?' When I started feeling icky and having pain I thought it was just stress from being a new mommy. I was in denial that all these things put together could be problematic. So, I figured that I would make it easy for both of us and just call it off myself. To this his response was 'Shut Up!' I have never been so grateful to have been shut down in all my life. I really love him. With that...let me tell you about my WEDDING! It is officially going down October 1, 2011! Hell or high water, he and I are getting married on this day. I just started planning. It is going to be a very low key type thing. Pretty much picnic style. I stole the idea from a friend's wedding, it was so nice and uncomplicated. I figured at this point there would be no other way to go. Invites go in the mail August 18th.
Family Planning
I never wanted kids! I was steadfast that I wanted nothing to do with that. Then I found out that I was expecting my very own. Upon feeling those first kicks in my belly and watching her grow from month to month at doctor appointments, I knew that my old opinion on having children was out the window. I knew the moment they put her in my arms and I kissed her soft little face that I was going to have more. When my fiance and I originally had the 'baby conversation', we discussed maybe having another when she was 5 or 6. Plus at that point I had no problems that could be considered a game changer. Then 4 rolled up on us really quickly and my health was going down for the count (boxing term)...we were no where near ready to have another child. She is turning 5 in August. At that point it dawned on me. How could we have any more children with my health the way it is? Will we be able to get pregnant and have it without complications? Am I going to be able to take care of them or are my future children fated to have to deal with a bedridden, cranky mommy? Eventually after a lot of tears, some hard to talk through conversations and a lot of research...we've decided that as long as the doctors tell me they have my back on this, We Will have another child. A lot of the research says that many women go into remission after they become pregnant. The people in some of my online message groups have told me a lot of the same things. There are risks, as with any pregnancy. What everyone is most worried about is how my health will react after the baby is born. I'm not going to lie...I am too. But we will just have to have a serious birth plan and hopefully hire some doctors that are ready to attack to any problems that try and ruin the plan. My friends have already made me agree to let them come with me during the initial planning doctors appointments, that way they can ask questions too. My blond bestie seems to think that I'm going to suddenly fall into a coma at any given moment. When I'm at her house or we are out together she only lets me think that I'm doing things for myself. If she could wrap my whole body in bubble wrap, she would. This baby thing is a bridge that we are building right now and I will let you know how construction is progressing.
That is what I think about the relationship my fiance and I have together. I never though that when me and fiance met almost 6 years ago, that we would be together today. I never thought that I could find anyone to put with Normal (Ridiculous) Jessie...let alone Crazy, Flared Up Jessie. I feel so lucky, he takes such good care of me. When I was first diagnosed, I was ready to completely remove myself from the relationship. All I could think was, 'Who wants to be on the other side of this crap for the rest of their lives?' When I started feeling icky and having pain I thought it was just stress from being a new mommy. I was in denial that all these things put together could be problematic. So, I figured that I would make it easy for both of us and just call it off myself. To this his response was 'Shut Up!' I have never been so grateful to have been shut down in all my life. I really love him. With that...let me tell you about my WEDDING! It is officially going down October 1, 2011! Hell or high water, he and I are getting married on this day. I just started planning. It is going to be a very low key type thing. Pretty much picnic style. I stole the idea from a friend's wedding, it was so nice and uncomplicated. I figured at this point there would be no other way to go. Invites go in the mail August 18th.
Family Planning
I never wanted kids! I was steadfast that I wanted nothing to do with that. Then I found out that I was expecting my very own. Upon feeling those first kicks in my belly and watching her grow from month to month at doctor appointments, I knew that my old opinion on having children was out the window. I knew the moment they put her in my arms and I kissed her soft little face that I was going to have more. When my fiance and I originally had the 'baby conversation', we discussed maybe having another when she was 5 or 6. Plus at that point I had no problems that could be considered a game changer. Then 4 rolled up on us really quickly and my health was going down for the count (boxing term)...we were no where near ready to have another child. She is turning 5 in August. At that point it dawned on me. How could we have any more children with my health the way it is? Will we be able to get pregnant and have it without complications? Am I going to be able to take care of them or are my future children fated to have to deal with a bedridden, cranky mommy? Eventually after a lot of tears, some hard to talk through conversations and a lot of research...we've decided that as long as the doctors tell me they have my back on this, We Will have another child. A lot of the research says that many women go into remission after they become pregnant. The people in some of my online message groups have told me a lot of the same things. There are risks, as with any pregnancy. What everyone is most worried about is how my health will react after the baby is born. I'm not going to lie...I am too. But we will just have to have a serious birth plan and hopefully hire some doctors that are ready to attack to any problems that try and ruin the plan. My friends have already made me agree to let them come with me during the initial planning doctors appointments, that way they can ask questions too. My blond bestie seems to think that I'm going to suddenly fall into a coma at any given moment. When I'm at her house or we are out together she only lets me think that I'm doing things for myself. If she could wrap my whole body in bubble wrap, she would. This baby thing is a bridge that we are building right now and I will let you know how construction is progressing.
Hospitals and Family
Hospitals
I was hospitalized for a whole 3 days. Many of you know...hospitals don't admit people for real anymore. Especially not for a whole 3 days. What an amazing trick my body managed to play on me. I had no idea what was going to happen next! I was definitely in awe of what I was forced to observe! *Sarcasm*
Long story short, my wonderful besties and I went to the Sublime/311 concert. Started off great, 'bout 45 minutes in and I started to feel real 'ify' and I guess 'lost'. My friend and I decided to take a short walk. I figured that might shake off this weird feeling. We made it to our very close destination...less than 50 feet. Next thing I know I was on my knees, on the ground, looking up at a very scared blond. I was sooooo confused at this point and all I could taste was metal. I told her I was fine, she yelled at me, I told her to shut up and that was that. After I got my bearings back, I concluded that, I had managed to have a seizure. It wasn't until I had another one the next day that I decided to take my ass to the hospital. I figured they would tell me that I was fine (crazy), pump me full of saline and send me home with a fat bill. I was very unpleasantly surprised (scared shitless) when they chose to admit me. Did you know they refused to let me leave that Prison and continued to run every possible test known to man for the next 3 days! By the end that whole ordeal, my new neurologist told me that I am AND will continue to have seizures. They concluded that most of seizures are induced by my headaches/migraines and those come about so often because I have Lupus AND rheumatoid (FML). And they showed me the blood tests to prove it. I've found that the only down fall to nursing school is that I can read and understand lab results...I couldn't even pretend to not understand what I was seeing. High ANA, High Sed Rate, Positive RH factor.
Needless to say, my visit to the hospital was eventful and probably the hardest time I've had this far. It sucks! I had never stayed in the hospital, except for when I had my daughter and I only had to stay for 1 night! Plus my fiancé was able to be there the whole time. This time, I was actually sick, and not only did he have to work, but he had to take care of our daughter. It was really scary for me. I was there most of the day not really coherent, and the doctors and nurses would come in, spit words at me, and leave. All I could do was say ok. Asking questions wasn't even probable for me to do on my own. They come in and poke you with needles and check you vitals ever 4 hours! They don't even give you a hug and a lollipop when they finish either. Poor bubby cakes. It was really rough for him. He wanted to be there the whole time he was really worried... I could see it all over his face every time he was there. Our daughter really didn't get it. She was having too much fun with her grandparents to care and that's ok.
Family
In one of my earlier posts, I explained how my mom was very unsupportive and how much this really upset me. Well, after being released from St. Luke's Hospital (prison) she revealed to me that she thought , my illness (that is actually proven) was all in my head. And now after 4 years of heartbreak and annoyance she is sorry for not being there. I wanted to say 'To hell with you and your 4 years too late apology! I am so grateful that the guy that you refuse to get to know, you know the one that you have so much frivolous shit to say about, was there from the beginning taking care of me. Has yet to miss one damn doctors appointment! Where were you'? I'm glad that it only took being hospitalized for 3 days to get that out of you. But I took a deep breath and moved on. Hopefully our relationship will improve now that we have had a serious sit down together (When pigs fly...I'm still pissed). I think the outlook is good...
Oh!... You should like this! My fiance's mother proceeded to tell her on that if I changed my eating habits, exercised and saw a pain management specialist I would get better. Uh, seriously?!? Lady, you know nothing about the disease process, by your own admission, you have NEVER asked me about anything, not even how I'm doing! Why do you have an opinion about anything...Honestly? She says 'just saying' like that justifies her rude ass comments. But seriously...How dare you?! My fiance was super upset about these comments. Later after I had been home for a day or two, during dinner, she tried to explain to me what she had explained to her son. I didn't confront her, she brought it up on her own. She explained to me how it was 'insane' that I'm 23 and on any medication and if I saw a pain management specialist and exercised (with my very uncontrolled joint pain and fatigue) that I would be okay. Also I should research my disease and understand my options better. I just looked at her. I wanted to say something but all I could do was nod. It would've been rude of me to tell her to shut the f?!$ up. At least half to most of all my Sunday's include looking up and better 'Understanding' of my options. But the good news is I guess I have sitting around smelling myself for 4 years instead of trying to get better! I eat what I can when I can, nausea/anorexia is apart of my everyday life. If I wasn't afraid of being in excruciating pain and starting flares that just wouldn't quit that I would be running and bike riding. But for right now let me finish school(stressor #1) and attempt yoga when it isn't a struggle just or to shower or put my hair in a ponytail. I still can not express how annoyed I am with all that. Thank goodness my fiance stood up for me. I don't think I would have made it if I had to defend myself at that point.
Just another week in the adventure that is my daily life.
I was hospitalized for a whole 3 days. Many of you know...hospitals don't admit people for real anymore. Especially not for a whole 3 days. What an amazing trick my body managed to play on me. I had no idea what was going to happen next! I was definitely in awe of what I was forced to observe! *Sarcasm*
Long story short, my wonderful besties and I went to the Sublime/311 concert. Started off great, 'bout 45 minutes in and I started to feel real 'ify' and I guess 'lost'. My friend and I decided to take a short walk. I figured that might shake off this weird feeling. We made it to our very close destination...less than 50 feet. Next thing I know I was on my knees, on the ground, looking up at a very scared blond. I was sooooo confused at this point and all I could taste was metal. I told her I was fine, she yelled at me, I told her to shut up and that was that. After I got my bearings back, I concluded that, I had managed to have a seizure. It wasn't until I had another one the next day that I decided to take my ass to the hospital. I figured they would tell me that I was fine (crazy), pump me full of saline and send me home with a fat bill. I was very unpleasantly surprised (scared shitless) when they chose to admit me. Did you know they refused to let me leave that Prison and continued to run every possible test known to man for the next 3 days! By the end that whole ordeal, my new neurologist told me that I am AND will continue to have seizures. They concluded that most of seizures are induced by my headaches/migraines and those come about so often because I have Lupus AND rheumatoid (FML). And they showed me the blood tests to prove it. I've found that the only down fall to nursing school is that I can read and understand lab results...I couldn't even pretend to not understand what I was seeing. High ANA, High Sed Rate, Positive RH factor.
Needless to say, my visit to the hospital was eventful and probably the hardest time I've had this far. It sucks! I had never stayed in the hospital, except for when I had my daughter and I only had to stay for 1 night! Plus my fiancé was able to be there the whole time. This time, I was actually sick, and not only did he have to work, but he had to take care of our daughter. It was really scary for me. I was there most of the day not really coherent, and the doctors and nurses would come in, spit words at me, and leave. All I could do was say ok. Asking questions wasn't even probable for me to do on my own. They come in and poke you with needles and check you vitals ever 4 hours! They don't even give you a hug and a lollipop when they finish either. Poor bubby cakes. It was really rough for him. He wanted to be there the whole time he was really worried... I could see it all over his face every time he was there. Our daughter really didn't get it. She was having too much fun with her grandparents to care and that's ok.
Family
In one of my earlier posts, I explained how my mom was very unsupportive and how much this really upset me. Well, after being released from St. Luke's Hospital (prison) she revealed to me that she thought , my illness (that is actually proven) was all in my head. And now after 4 years of heartbreak and annoyance she is sorry for not being there. I wanted to say 'To hell with you and your 4 years too late apology! I am so grateful that the guy that you refuse to get to know, you know the one that you have so much frivolous shit to say about, was there from the beginning taking care of me. Has yet to miss one damn doctors appointment! Where were you'? I'm glad that it only took being hospitalized for 3 days to get that out of you. But I took a deep breath and moved on. Hopefully our relationship will improve now that we have had a serious sit down together (When pigs fly...I'm still pissed). I think the outlook is good...
Oh!... You should like this! My fiance's mother proceeded to tell her on that if I changed my eating habits, exercised and saw a pain management specialist I would get better. Uh, seriously?!? Lady, you know nothing about the disease process, by your own admission, you have NEVER asked me about anything, not even how I'm doing! Why do you have an opinion about anything...Honestly? She says 'just saying' like that justifies her rude ass comments. But seriously...How dare you?! My fiance was super upset about these comments. Later after I had been home for a day or two, during dinner, she tried to explain to me what she had explained to her son. I didn't confront her, she brought it up on her own. She explained to me how it was 'insane' that I'm 23 and on any medication and if I saw a pain management specialist and exercised (with my very uncontrolled joint pain and fatigue) that I would be okay. Also I should research my disease and understand my options better. I just looked at her. I wanted to say something but all I could do was nod. It would've been rude of me to tell her to shut the f?!$ up. At least half to most of all my Sunday's include looking up and better 'Understanding' of my options. But the good news is I guess I have sitting around smelling myself for 4 years instead of trying to get better! I eat what I can when I can, nausea/anorexia is apart of my everyday life. If I wasn't afraid of being in excruciating pain and starting flares that just wouldn't quit that I would be running and bike riding. But for right now let me finish school(stressor #1) and attempt yoga when it isn't a struggle just or to shower or put my hair in a ponytail. I still can not express how annoyed I am with all that. Thank goodness my fiance stood up for me. I don't think I would have made it if I had to defend myself at that point.
Just another week in the adventure that is my daily life.
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