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!
Monday, July 25, 2011
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.
Thursday, July 7, 2011
Why I Hate Arthritis
I hate arthritis because I'm ONLY 23!
Because it limits playtime with my 4 year old and most likely any other child I will choose to bring into this world. Let alone family and friends.
Because it makes me feel lazy and like a shut in.
Because I want to dance but I can't because I KNOW it will hurt later.
I love to eat but can't because of the nausea/ disease induced anorexia that I live with on the daily basis.
Because at 23 I want men to look at me when I walk cuz I look damn good in my heels or jeans, not because of my crazy limping or because I'm dropping things all through a store.
Because the meds are too expensive and I'm a student. So I actually have to choose between medications and feeding my family... and my family always comes first.
Because as much as I want to be an advocate for myself at doctors appointments, I still clam up and don't address questions or concerns like I should. I don't think they really listen to me anyway. They didn't for years...why start now?
Because no one in my family (except my fiance) can understand why I need a nap and can't cook like I used to.
Because I'm cranky 96% of the time! I used to be so bubbly and care free. I want to be that person again.
Please comment on why you hate arthritis or any other chronic illness
Because it limits playtime with my 4 year old and most likely any other child I will choose to bring into this world. Let alone family and friends.
Because it makes me feel lazy and like a shut in.
Because I want to dance but I can't because I KNOW it will hurt later.
I love to eat but can't because of the nausea/ disease induced anorexia that I live with on the daily basis.
Because at 23 I want men to look at me when I walk cuz I look damn good in my heels or jeans, not because of my crazy limping or because I'm dropping things all through a store.
Because the meds are too expensive and I'm a student. So I actually have to choose between medications and feeding my family... and my family always comes first.
Because as much as I want to be an advocate for myself at doctors appointments, I still clam up and don't address questions or concerns like I should. I don't think they really listen to me anyway. They didn't for years...why start now?
Because no one in my family (except my fiance) can understand why I need a nap and can't cook like I used to.
Because I'm cranky 96% of the time! I used to be so bubbly and care free. I want to be that person again.
Please comment on why you hate arthritis or any other chronic illness
Wednesday, July 6, 2011
At 23, How Did I get Here?
It's A Girl!! In August 2006, my daughter Jordan was born! One of the best days of my life! Fast foward 4 years, thousands- in -medical- bills, crippling- pain- and- no answers later to December 2010.
"You have Sero-Negative Rheumatoid Arthritis", was what my Rheumatologist said to me on our second appoinment together. I was shocked. Who knew that this was why I was too tired to breathe. That this was the culprit behind me not being able to handle a simple diaper change when my muffin was just an infant and why I SEVERELY HATE STAIRS!
My jaw was on the floor and I stared at her with glazed over eyes. My very empathetic rheumatologist (the term is used with sincere sarcasm) proceeded to ramble off 5 to a million medications that she was about throw me on. Once she was done, she handed me all the prescriptions, told me that she would fit me in in two months and walked out of the room leaving me there with myself and the tears.
I'm going into nursing. I want to take care of people and be there when they need a shoulder to cry on. If I felt like I could make it through med school, I would be a DOCTOR that my patients can lean on and answer questions for. My brand new Rheumatologist that I was about to pay my hard earned money to...was unable to do either. So I packed up my thoughts, handed over my co-pay and walked out of her office never to return.
I went home and cried for a while. All I could think about is 'I'm 22 years old with a 4 year old. I have a wonderful relationship with my fiance and am in what is supposed to be the prime of my life. What is this RA crap and who the Hell did I piss off to be bestowed this wonderful, obviously life changing disease?' I gave up my quest to answer these questions and decided to call my mom.
My mom being, ya know, thinking she's my mother and all would hopefully sympathize and help me through this. I called even though I knew that for the past 4 years I had been dealing with these on going health problems with no real concern from her. I asked her numerous times to come with me to doctors appointments because I was scared of what they may actually tell me. She kept telling me to let her know the date and she would see what she could do. That didnt satisfy me. I wanted to have my strong, black, mother there to ask questions if I wasn't strong enough. To put her arm around me and say 'I got your back', if they did tell me horrible news. But when I got the news...she wasn't there and I felt alone. Even though I had my fiance to support me, it kind of wasn't the same.
This was the conversation we had:
Me: Hey Ma. I went to the doctor today. I have RA.
Mom: Hmm. I wonder where you got that from. Nobody on my side of the family has that kind of thing.Me: Uhh... I don't know. I have it though. Kind of nice to have an answer to the problems that I've been having.
Mom: Well the next time you come over bring your test results.
Me: What, why? You don't believe me? I wanted you to come. I asked. I even offered to set it up around your work schedule. You want the results, but not to come with me?
Mom: No. I don't need to see the results. I still don't know where you got this from. They gave you meds though?
Me: Yeah, I have meds. Lots of em.
Mom: Okay then! Take the meds, you'll be good as new!
Me: Okay ma... i gotta go. i'll talk to you later.
I got off the phone wondering about my mothers nursing license. I knew without doing research that medication was not going to just make me 'good as new'. This is going to be a challenge for a little longer than FOREVER! And so far I'm off to a real annoying start. Because of the reaction that I recieved from my own mother, I have been very hesitant to share the news with the rest of my family. If anyone in my extended family knows I have Rheumatoid at this point.. it didn't come from me.
My fiance continues to be (or at least does a pretty good job pretending to be) very supportive. That's all that I can really ask from him, but he does so much more anyway. A lot people that I have talked to or read about with RA don't even have that. He tells me what I need to hear(sometimes) and talks about OUR future battle with this disease openly when needed. So glad that I got to him first in the dating rat race.I was amazed at how well my close friends took it. They have known since I found out and have stuck by me. They have never treated me differently. When my RA flares up and I'm not moving as quickly and am too tired to roam the streets, we hang at home or do something less taxing on me. I appreciate them so much. They have helped me through many of what I call 'Emotional Flares'. My fiance is good for a lot of things...understanding a crying girl is not always his strong suit. My friends gave me the loving nickname 'Crip'. I know...kinda negative. Accepting the nickname 'Crip' is one of the first ways for me to not let RA take over and make me a different person, but coexist in the person that I am and am still becoming.
When you research Rheumatoid Arthritis on google, you're flooded with signs and symptoms, diagnostic tests and outlooks. You really have dig deep and search for hours on end looking for people who are going throught the same things. People who my have the same questions, problems and stories that you have. With that I decided to start talking about this openly. Not only with family and friends, but to newly, young diagnosed patients feeling lost in their disease, medications, economy, relationships, and plain and simple... LIFE!
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