10 days since my last post... I have been experiencing a lot of depression lately. My husband has told me that I'm not the bubbly woman he married. And that saddens me, emensely. I have felt pretty good. I really think the Remicade worked! Too bad I had such a poor reaction to it (blood pressure, headaches, dizzy spells). I felt good enough to play soccer on Saturday night (first time since August)!! AND I went to karate class last night and plan on going tomorrow night.
I have been having anxiety attacks. I went to my family practice (my dr was not in, but I saw a collegue of his) and the dr thought I was having a flare in my ribs and then having the anxiety attack bc I freaked out bc the pain is right by my heart. This is quite possible, but I can tell you that I know anxiety is in there somewhere.
I'm still waiting on my test results from the Cleveland Clinic. I called the old rheumy's office and advised them that I have left their practice and why. I complained to the lady that took my call but I don't know if anyone will hear it. Honestly, I think she may have even put me on speaker phone! I hope the old rheumy heard my complaint, but she probably didn't.
I'm trying a new way of eating too. It's called the "paleo- diet". It basically gets rid of grains. They say that some grains slip through the intestines and bond to certain proteins in our bodies. Then our immune system mistakes those new strange looking proteins for invaders. Then the immune system attacks them. This confuses what is a "real" invader vs what is part of our body. I don't know if I completely believe it, but it sounds good and looks/feels a lot like the atkins diet... soo, what can it hurt?
Also, I've read a lot about red wine calming inflammation in the body. I don't like red wine, but a friend of mine gave me something called "reservatrol". It is all of the good stuff in red wine without the bad. Its in a capsule form, and you take one a day. I started that today too. So now i'm up to 9 pills every morning! YAY!.. lol
Have a great night.
t
RA Fightin Mama: This blog represents my Rheumatoid Arthritis journey.
Wednesday, January 19, 2011
Sunday, January 9, 2011
Jan. 9, 2011
I'm posting this web blog from RA Warriors because its real. Because we can't be ostriches with our heads in the sand and not be aware of the harsh reality that could happen and what this disease really does. I'm posting this for those people who still don't understand what RA is and what it does.
http://rawarrior.com/can-rheumatoid-arthritis-kill-you/
http://rawarrior.com/can-rheumatoid-arthritis-kill-you/
Thursday, January 6, 2011
Jan. 6, 2010
Went to an Urgent care facility yesterday for my high bp and headache. When I got there my bp had normalized- YAY!!! They gave me some muscle relaxers and said that the headache is probably now a tension headache. So I took 2 muscle relaxers and went to bed at 7pm and woke up this morning at 8:30am. I needed that sleep!
I ran around to a couple of medical offices today, collecting my records to take with me to my Cleveland Clinic appointment next Wed. I'm excited to see if I can find my "wizard". :)
I'm soo happy to get out of the old RA dr's care. She was not helpful at all and always made me feel less than her when I asked questions or she would just talk over me. Gotta love that! grr... Oh well, good riddens to her! :)
Have a great day!
t
I ran around to a couple of medical offices today, collecting my records to take with me to my Cleveland Clinic appointment next Wed. I'm excited to see if I can find my "wizard". :)
I'm soo happy to get out of the old RA dr's care. She was not helpful at all and always made me feel less than her when I asked questions or she would just talk over me. Gotta love that! grr... Oh well, good riddens to her! :)
Have a great day!
t
Wednesday, January 5, 2011
Jan.5, 2011
I have had a headache for 7 days now. It started the day after my last remicade infusion. My hands and feet have been swelling and then going down and then swelling again. I have had many dizzy spells/episodes too. A fellow RA Warrior suggested that I check my blood pressure on Sunday (Jan.2). I went to Rite Aid and put my arm in the cuff. The first reading was 168/132. I think my eyes popped out of my head! I took it again. This time it was 135/102 (or something like that). I went home and tried putting all the pieces together. After I put Marissa to bed, I went to the ER.
The ER Dr was very non chalant about my condition. He said it was all due to the Remicade. He gave me a pain medication and an anti-inflammatory (which lowered my bp temporarily). And did a head ct scan. The head ct scan came back normal and they sent me home. They advised me to call my family dr the following day.
The next morning (Monday) I went back into Rite Aid and took my bp again. It was still 135/102. I immediately called my family Dr. Spoke to the nurse. She was concerned with my symptoms too. She thought it was maybe from the remicade as well. She advised me to call my RA Dr, and call her back after I spoke to my RA Dr.
I left a message with the nurse to have the RA Dr call me back (this was at 9:30am) . I advised her of my symptoms- all of them. The Medical Assistant for the RA Dr didn't call me back till 5pm. The MA only addressed my headache. Told me to take Tylenol. She didn't address my high bp, dizzy spells or swelling hands/feet. I was LIVID. I asked the MA "Did she say ANYTHING about my high bp, dizzy spells or swelling or did she completely ignore those symptoms?" The MA said there were no notes about those at all. She said to call back in the morning and make an appt, and to stop the Remicade. (Which btw- I don't give myself remicade. I get those infusions at the Dr office.) So my headache, dizzy spells continue...as the world turns...
Tuesday...I called the RA dr back and requested an appt for this afternoon (Tuesday afternoon). I had been racking my brain all morning trying to figure out how to deal with this appt. I knew that "going off" on her wouldn't get me anywhere but I was LIVID. So, when I got there, they took my bp- now it was 148/110. WONDER. WHY!!!??? When she comes in the room, she says "sounds like Remicade is not agreeing with you". I said "there's a couple of things not agreeing with me". I started to go into my high bp, dizzy spells and swelling and what do you think she did? SHE TALKED OVER ME!! She didn't listen. She didn't even hear the high blood pressure till later when I REPEATED MYSELF!!! GRR..
She then said "blood pressure is not in my realm. Remicade should not make your bp go up. I'm perplexed. You've always had good blood pressure. Its not the steroid doing it because it would have done it a long time ago." (I have been on prednisone since July. and now I'm on the lowest dose I've been on- 12.5mgs/day) "Oh and for the headaches, take your Tramadol if the tylenol isn't working."- she said.
Then she said "You should see your primary Dr about your blood pressure, I can't do anything."
Then I asked for a copy of all my medical records from her. She asked "would you like a certain part?" I said- "No, all of them. I'm making a copy for myself at home". When in all reality- she just lost herself a patient. I'm going to the Cleveland Clinic. I'm sure they are competent Dr's, seeing that they are ranked #2 in the nation.
So, here I am, taking Tramadol for a headache. I took THREE Tramadol last night and it didn't work. My head was and still is throbbing. I just called my family Dr and they can't get me in till tomorrow at 4:30. They advised that I go back to the ER or an urgent care so I can get some pain relief.
It's always something! Where are my boxing gloves??
The ER Dr was very non chalant about my condition. He said it was all due to the Remicade. He gave me a pain medication and an anti-inflammatory (which lowered my bp temporarily). And did a head ct scan. The head ct scan came back normal and they sent me home. They advised me to call my family dr the following day.
The next morning (Monday) I went back into Rite Aid and took my bp again. It was still 135/102. I immediately called my family Dr. Spoke to the nurse. She was concerned with my symptoms too. She thought it was maybe from the remicade as well. She advised me to call my RA Dr, and call her back after I spoke to my RA Dr.
I left a message with the nurse to have the RA Dr call me back (this was at 9:30am) . I advised her of my symptoms- all of them. The Medical Assistant for the RA Dr didn't call me back till 5pm. The MA only addressed my headache. Told me to take Tylenol. She didn't address my high bp, dizzy spells or swelling hands/feet. I was LIVID. I asked the MA "Did she say ANYTHING about my high bp, dizzy spells or swelling or did she completely ignore those symptoms?" The MA said there were no notes about those at all. She said to call back in the morning and make an appt, and to stop the Remicade. (Which btw- I don't give myself remicade. I get those infusions at the Dr office.) So my headache, dizzy spells continue...as the world turns...
Tuesday...I called the RA dr back and requested an appt for this afternoon (Tuesday afternoon). I had been racking my brain all morning trying to figure out how to deal with this appt. I knew that "going off" on her wouldn't get me anywhere but I was LIVID. So, when I got there, they took my bp- now it was 148/110. WONDER. WHY!!!??? When she comes in the room, she says "sounds like Remicade is not agreeing with you". I said "there's a couple of things not agreeing with me". I started to go into my high bp, dizzy spells and swelling and what do you think she did? SHE TALKED OVER ME!! She didn't listen. She didn't even hear the high blood pressure till later when I REPEATED MYSELF!!! GRR..
She then said "blood pressure is not in my realm. Remicade should not make your bp go up. I'm perplexed. You've always had good blood pressure. Its not the steroid doing it because it would have done it a long time ago." (I have been on prednisone since July. and now I'm on the lowest dose I've been on- 12.5mgs/day) "Oh and for the headaches, take your Tramadol if the tylenol isn't working."- she said.
Then she said "You should see your primary Dr about your blood pressure, I can't do anything."
Then I asked for a copy of all my medical records from her. She asked "would you like a certain part?" I said- "No, all of them. I'm making a copy for myself at home". When in all reality- she just lost herself a patient. I'm going to the Cleveland Clinic. I'm sure they are competent Dr's, seeing that they are ranked #2 in the nation.
So, here I am, taking Tramadol for a headache. I took THREE Tramadol last night and it didn't work. My head was and still is throbbing. I just called my family Dr and they can't get me in till tomorrow at 4:30. They advised that I go back to the ER or an urgent care so I can get some pain relief.
It's always something! Where are my boxing gloves??
Saturday, January 1, 2011
Jan. 1, 2011
Hello everyone!
I type this with swollen fingers and very tight hands. I have cut back my prednisone by another 2.5mgs starting this past Wed (Dec.29), so this now makes my prednisone intake 12.5mg a day. Wednesday was the same day that I had my 2nd Remicade infusion.
I'm going to just keep this post straight forward to my symptoms and how i'm feeling- sorry but my fingers and hands really do hurt.
Thank you for reading my notes and staying informed. I hope that my notes are helpful to you or someone you know. This journey has definitely been interesting.
PS. Marissa asked me yesterday if I'll ever get better and stop going to the doctor all the time. I started to cry and said, " I promise honey, I will be better than I am now." My God how I wish I had my old body back.
<3
t
I type this with swollen fingers and very tight hands. I have cut back my prednisone by another 2.5mgs starting this past Wed (Dec.29), so this now makes my prednisone intake 12.5mg a day. Wednesday was the same day that I had my 2nd Remicade infusion.
I'm going to just keep this post straight forward to my symptoms and how i'm feeling- sorry but my fingers and hands really do hurt.
- I have felt that I have had something stuck in my throat for the past 2 weeks or so. I went to the GI dr on Tuesday. I have to have a dialation surgery in Feb. This is mostly being caused by the prednisone. The steroid apparently relaxes some muscles (one of them being the top of my stomach) and is allowing acid to come up into my esophogus, causing scar tissue. great huh? so they have to go in and remove the scar tissue.
- I'm trying so hard to put up with the pain, swelling and tightness in my hands, feet and knees. The prednisone is the answer, but its not an answer I want to take. I want off this drug. I went to walmart the other day and literally started limping when walking in the store. Some people literally got mad at me bc i wasn't walking fast enough, so they ran into me! WOW. I was beside myself. When I got home, my knee was swollen twice the size of normal- atleast twice the size.
- My remicade infusion was on Wed. They gave me tylenol, benedryl and a steroid before the infusion. I slept for about an hour of the infusion. No headache like last time but I have had to take tylenol every 4 hours since (and now its SATURDAY!). OH, and the steroid- talk about a DOUBLE whammy of appetite. If I thought the prednisone was bad, a double steroid was HORRIBLE. I swear I ate FOUR dinners that night! and my appetite is just returning to "prednisone normal". lol
- Yesterday, NYE, I cooked all day and ran around. By the time we sat down and ate dinner at 8, I couldn't walk. My feet and knee were so swollen. I had to take a pain pill (tramadol) and a glass of wine.
- I met an older lady when I was getting my infusion. She has had RA since the 1980's. We started talking about how I couldn't wear my wedding rings because my fingers were so swollen. Then I looked at her hands. Her fingers were literally sideways. I almost cried. We started talking about how it happened. It just happened about a year ago, and it only took 3 months for her hands to get like that. WOW. She basically woke up one day and one finger was like that and then the rest. So, yeah, i'm afraid of that. I attached a picture of what her hands look like. :(
Thank you for reading my notes and staying informed. I hope that my notes are helpful to you or someone you know. This journey has definitely been interesting.
PS. Marissa asked me yesterday if I'll ever get better and stop going to the doctor all the time. I started to cry and said, " I promise honey, I will be better than I am now." My God how I wish I had my old body back.
<3
t
Dec. 19, 2010
Hello everyone! I can't believe its been 9 days since my last note.
So here's the run down of the week...
Tuesday was my first remicade infusion...and let me tell you, I think I had close to every single possible reaction that was on that side effect paper. UGH. I was fine for the first 90 mins of the infusion, the last half hour was pretty rough. I got a KILLER headache and then my arm started to get really cold, and then chills all over my entire body. I was not given any medication prior to the infusion. I had not eaten since breakfast and it was 1:30 by the time I had finished. So, with my head screaming, I ran to the mall to get some food, thinking maybe that was the partial cause of my headache. I inhaled my sandwhich on the way home and took some tylenol when I got home and took a 2 hour nap. When I woke up, I was operational but still very groggy.
Wednesday was a different story. I had a low grade fever all day, nausea and dizzy spells. It was not a good day. I stayed in bed much of the morning and tried to work in the afternoon. I did call the Arthritis clinic Dr. She said that they will give me medication (tylenol, benedry and a steroid) before my next infusion. I WAS EXHAUSTED on Wed too. I would have to say that the exhaustion from this disease is one of the worse parts. When your body is constantly fighting itself, it gets fatigued. And that's why someone with an autoimmune disease (like RA) gets so sick all the time. Our immune system is always fighting other things (like our body) instead of the bad stuff that's trying to get in (like germs and colds and other serious illnesses).
Thursday was better but still not feeling anything from the medication. My wrists have been flaring for about a week and a half now. I went to a local coffee/gourmet lunch shop for lunch. I literally broke down in tears because my wrist hurt so bad that I couldn't pick up my fork. One may ask, how did this get bad so fast? Honestly, when you have a flare- that's how it goes...it comes and goes- the pain and swelling that is. My wrists are getting worse though. My right much more than my left. It hasn't been normal size for about 2 weeks now and I can't even open pop bottles, or put Marissa's gloves on. :(
Friday was a somewhat "normal" day. We had date night, which I love! We went to Stan Hewitt Hall and then to Luigi's for dinner. YUM-O! ;) (That's a shout out to my girls!)
Saturday was a VERY busy day. I did so much "stuff" that I haven't been able to do without getting exhausted by 5 or needing a nap by 12. I cleaned, swept, put plastic on the windows, shopped, dishes, washed all the sheets and blankets in the house... It may be a normal Saturday to you, but I have not had the energy to be able to do that in over 8 MONTHS- atleast. I don't know if it was from the Remicade infusion or what, but I welcomed it. I was SOOO happy to be able to feel "normal". I almost wanted to tempt fate and go play soccer but I thought maybe that was pushing it a bit too far on the first night of feeling good. My BFF Jen came over and we exchanged presents too! She got me SO many things to help calm and destress me. I LOVES her. :)
Today, I felt a bit tired. BUT, I did only get 5 hours of sleep. I'm learning that sleep is ESSENTIAL for me. I've read a couple of places that RA patients need 10 hours of sleep a day. If you can get it all at night, fine, but 8 at night with a 2 hour nap is good too. When I'm working, I don't see a 2 hour nap happening but I can try to get some good sleep with my Ambien... Ahh ambien. lol
<span>A couple of other things I have noted since my last blog...</span>
I think that I can tell what joints will have a flare next... I'll be interested to see if my assumption is right. I THINK the joint starts clicking. ie. my left ankle started clicking yesterday. I have had LOTS of time in my life when my joints click. My right wrist is still clicking sometimes, even though its swollen right now. We will see if I'm right. I'll let you know.
I have started to put a stretching band next to the bed for when I wake up. The worse time for most RA patients is right when they wake up. I am slow moving for about 90 mins after I get up. Stretching while in bed before I get up has helped some.
I have been sick with a cold for 2 weeks now. I know the remicade dose is just going to make this worse (my immune system that is). I know that I shouldn't take anything to boost my immune system because that's the whole problem with RA- an over active immune system. That's what Remicade is supposed to rid my body of, so I don't want to ruin that. Oh well, I'll just keep fighting the good fight and I'll kick this dreaded cold sooner or later.
Take care everyone. I hope this Christmas season finds you happy, healthy and wise. :)
As for me, I just want 2010 to be over. 2011 HAS to be better!!!
t
So here's the run down of the week...
Tuesday was my first remicade infusion...and let me tell you, I think I had close to every single possible reaction that was on that side effect paper. UGH. I was fine for the first 90 mins of the infusion, the last half hour was pretty rough. I got a KILLER headache and then my arm started to get really cold, and then chills all over my entire body. I was not given any medication prior to the infusion. I had not eaten since breakfast and it was 1:30 by the time I had finished. So, with my head screaming, I ran to the mall to get some food, thinking maybe that was the partial cause of my headache. I inhaled my sandwhich on the way home and took some tylenol when I got home and took a 2 hour nap. When I woke up, I was operational but still very groggy.
Wednesday was a different story. I had a low grade fever all day, nausea and dizzy spells. It was not a good day. I stayed in bed much of the morning and tried to work in the afternoon. I did call the Arthritis clinic Dr. She said that they will give me medication (tylenol, benedry and a steroid) before my next infusion. I WAS EXHAUSTED on Wed too. I would have to say that the exhaustion from this disease is one of the worse parts. When your body is constantly fighting itself, it gets fatigued. And that's why someone with an autoimmune disease (like RA) gets so sick all the time. Our immune system is always fighting other things (like our body) instead of the bad stuff that's trying to get in (like germs and colds and other serious illnesses).
Thursday was better but still not feeling anything from the medication. My wrists have been flaring for about a week and a half now. I went to a local coffee/gourmet lunch shop for lunch. I literally broke down in tears because my wrist hurt so bad that I couldn't pick up my fork. One may ask, how did this get bad so fast? Honestly, when you have a flare- that's how it goes...it comes and goes- the pain and swelling that is. My wrists are getting worse though. My right much more than my left. It hasn't been normal size for about 2 weeks now and I can't even open pop bottles, or put Marissa's gloves on. :(
Friday was a somewhat "normal" day. We had date night, which I love! We went to Stan Hewitt Hall and then to Luigi's for dinner. YUM-O! ;) (That's a shout out to my girls!)
Saturday was a VERY busy day. I did so much "stuff" that I haven't been able to do without getting exhausted by 5 or needing a nap by 12. I cleaned, swept, put plastic on the windows, shopped, dishes, washed all the sheets and blankets in the house... It may be a normal Saturday to you, but I have not had the energy to be able to do that in over 8 MONTHS- atleast. I don't know if it was from the Remicade infusion or what, but I welcomed it. I was SOOO happy to be able to feel "normal". I almost wanted to tempt fate and go play soccer but I thought maybe that was pushing it a bit too far on the first night of feeling good. My BFF Jen came over and we exchanged presents too! She got me SO many things to help calm and destress me. I LOVES her. :)
Today, I felt a bit tired. BUT, I did only get 5 hours of sleep. I'm learning that sleep is ESSENTIAL for me. I've read a couple of places that RA patients need 10 hours of sleep a day. If you can get it all at night, fine, but 8 at night with a 2 hour nap is good too. When I'm working, I don't see a 2 hour nap happening but I can try to get some good sleep with my Ambien... Ahh ambien. lol
<span>A couple of other things I have noted since my last blog...</span>
I think that I can tell what joints will have a flare next... I'll be interested to see if my assumption is right. I THINK the joint starts clicking. ie. my left ankle started clicking yesterday. I have had LOTS of time in my life when my joints click. My right wrist is still clicking sometimes, even though its swollen right now. We will see if I'm right. I'll let you know.
I have started to put a stretching band next to the bed for when I wake up. The worse time for most RA patients is right when they wake up. I am slow moving for about 90 mins after I get up. Stretching while in bed before I get up has helped some.
I have been sick with a cold for 2 weeks now. I know the remicade dose is just going to make this worse (my immune system that is). I know that I shouldn't take anything to boost my immune system because that's the whole problem with RA- an over active immune system. That's what Remicade is supposed to rid my body of, so I don't want to ruin that. Oh well, I'll just keep fighting the good fight and I'll kick this dreaded cold sooner or later.
Take care everyone. I hope this Christmas season finds you happy, healthy and wise. :)
As for me, I just want 2010 to be over. 2011 HAS to be better!!!
t
Dec. 10, 2010
I met with my family dr today. DR SUTTON- YOU ARE WONDERFUL. I always call John after my dr appts. and today, like every other time I meet with Dr Sutton, I said to John "I LOVE HIM". lol and John always says "Yeah, I know. He's such a nice man". I truly hope that everyone in this world gets to experience a true Dr like John D. Sutton. His compassion, knowledge and his quest for answers always amazes me. We literally talked for 45 mins. We talked about my medications, side effects that I"m experiencing, my mood/mental well being with all of this that's going on. I'm so glad that he is a teacher of future Dr's because I know he instills those bedside manners that are so important in Dr's that we rarely see anymore in today's society. He actually listens to my questions and answers. And if he doesn't know the answer, he will find out!
He also brought up the idea of getting a 2nd opinion from Cleveland Clinic. (See Tina, you were right! And I did listen to you (Tina), I have been doing some research on them.) But when Dr. Sutton said that he would welcome their opinion, that made me very happy because a good dr would always welcome that. All I have to do is say the word and he will send a request up for me.
We discussed my lack of sleep too. The fact that I'm having to take sleep aids that only last for about 4 hours is not cutting it. So, Ambien it is. Ambien worked very well last time he prescribed it. I just need to sleep. And I don't take any sleep aids when the kids are here because I want to make sure that I'm aware enough to hear them.
We discussed my cholesterol/triglycerides screening that was done in Aug. WAY out of whack. So, we are going to do another in Feb- when I'm off of prednisone. (prednisone really screws up your blood panel)
On another note, my remicade came in the mail yesterday. It's amazing what $1000 a vial gets you... NOT MUCH. WOW. I took a picture. I attached it to this blog today. Take a gander.. no wonder med companies are making a killing off of chronically ill patients. WOW. Anyway, I go for my first infusion on Tuesday- YAY!!!! I'm so excited. I know I should be cautiously optimistic, but I"m so extied! I need the "GO GO JUICE"! ;)
Take care everyone, and have a great weekend! Stay warm, i hear its supposed to get really cold out there!
t
He also brought up the idea of getting a 2nd opinion from Cleveland Clinic. (See Tina, you were right! And I did listen to you (Tina), I have been doing some research on them.) But when Dr. Sutton said that he would welcome their opinion, that made me very happy because a good dr would always welcome that. All I have to do is say the word and he will send a request up for me.
We discussed my lack of sleep too. The fact that I'm having to take sleep aids that only last for about 4 hours is not cutting it. So, Ambien it is. Ambien worked very well last time he prescribed it. I just need to sleep. And I don't take any sleep aids when the kids are here because I want to make sure that I'm aware enough to hear them.
We discussed my cholesterol/triglycerides screening that was done in Aug. WAY out of whack. So, we are going to do another in Feb- when I'm off of prednisone. (prednisone really screws up your blood panel)
On another note, my remicade came in the mail yesterday. It's amazing what $1000 a vial gets you... NOT MUCH. WOW. I took a picture. I attached it to this blog today. Take a gander.. no wonder med companies are making a killing off of chronically ill patients. WOW. Anyway, I go for my first infusion on Tuesday- YAY!!!! I'm so excited. I know I should be cautiously optimistic, but I"m so extied! I need the "GO GO JUICE"! ;)
Take care everyone, and have a great weekend! Stay warm, i hear its supposed to get really cold out there!
t
Dec. 7, 2010
Larry, Curly and Mo decided to pop by for a visit this week... And by that I mean The insurance company, the prescription company and my Arthritis dr office. I have literally had to call every day about my Remicade prescription getting approved and sent so I can get it before the end of the year. The Dr office said they have done everything they were supposed to do, the insurance company says they have done everything they were supposed to do and the prescription company says they are waiting on prior approvals from both. UGH... SO FRUSTRATED!
I have decided to seek out a mental health practiononer for my trying to deal with this diagnosis. I'm going to try hypnotherapy. Being a student of psychology, I understand how much your body takes from your mind and can really screw you up. I have been dealing with A LOT of stress this year, job, family, health and I believe it all plays on one another. Of course the hypnotherapist is not in network for insurance, so thats just another out of pocket expense. Oh well. I think it will be well worth the money.
We are going to look at hot tubs tomorrow night. I'm so thankful for John. He truly is trying to help me. Yes, he has bonehead moments but the good outweigh the bad. I just need to keep reminding myself of that. He is such a good supporter, father, friend. I dont know where I would be without him.
Marissa and Mason are counting down the days till Christmas! I can't wait to tell them about Disney! We are taping our "Mission Impossible" scenario this week (prob thurs or fri night). John and I are dressing up in all black- turtlenecks, glasses and moustaches. he will be agent J and me agt T. We will have the mission impossible music playing behind us. We will tell the kids about a TOP SECRET mission. We will show them an airplane as their first mode of transportation. Then the disney cruise ship as the second. Then they will have to travel to far away lands and go through the jungle (Atlantis in the bahammas).After that portion of the mission, we will meet our contacts (Mickey, Minnie, Goofy and Donald) for further instructions. If they choose to accept this mission, it will begin on March 24, 2011! We are burn a CD of this tape and then wrap it in about 6 boxes (one inside the next). and then they get to watch it. I'M SO PUMPED!!!!!!!!!
I'm very excited about starting the Remicade. I learned some things about my immune system this week too. I don't want to pump it up while on medication. Which actually makes sense since my immune system is the problem. I need it to get down so we can manage my RA. BUT that does mean that I will be more susceptible to illness and infections. Antibacterial lotion, santizer, neosporin and bandaids will be my friend moving forward. Oh, just an update... my prednisone is still at 15 mgs a day but my appetite is lessening. :) YAY! Still have the water weight and the "moon face" and the camel hump at the base of my neck but hey, improvement is improvement. :) Still on the methotrexate,, thats not going anywhere but i did drop the dose to 60cc's and i'm feeling better. no nausea yesterday! YAY
Take care everyone and have a great rest of the week!
t
I have decided to seek out a mental health practiononer for my trying to deal with this diagnosis. I'm going to try hypnotherapy. Being a student of psychology, I understand how much your body takes from your mind and can really screw you up. I have been dealing with A LOT of stress this year, job, family, health and I believe it all plays on one another. Of course the hypnotherapist is not in network for insurance, so thats just another out of pocket expense. Oh well. I think it will be well worth the money.
We are going to look at hot tubs tomorrow night. I'm so thankful for John. He truly is trying to help me. Yes, he has bonehead moments but the good outweigh the bad. I just need to keep reminding myself of that. He is such a good supporter, father, friend. I dont know where I would be without him.
Marissa and Mason are counting down the days till Christmas! I can't wait to tell them about Disney! We are taping our "Mission Impossible" scenario this week (prob thurs or fri night). John and I are dressing up in all black- turtlenecks, glasses and moustaches. he will be agent J and me agt T. We will have the mission impossible music playing behind us. We will tell the kids about a TOP SECRET mission. We will show them an airplane as their first mode of transportation. Then the disney cruise ship as the second. Then they will have to travel to far away lands and go through the jungle (Atlantis in the bahammas).After that portion of the mission, we will meet our contacts (Mickey, Minnie, Goofy and Donald) for further instructions. If they choose to accept this mission, it will begin on March 24, 2011! We are burn a CD of this tape and then wrap it in about 6 boxes (one inside the next). and then they get to watch it. I'M SO PUMPED!!!!!!!!!
I'm very excited about starting the Remicade. I learned some things about my immune system this week too. I don't want to pump it up while on medication. Which actually makes sense since my immune system is the problem. I need it to get down so we can manage my RA. BUT that does mean that I will be more susceptible to illness and infections. Antibacterial lotion, santizer, neosporin and bandaids will be my friend moving forward. Oh, just an update... my prednisone is still at 15 mgs a day but my appetite is lessening. :) YAY! Still have the water weight and the "moon face" and the camel hump at the base of my neck but hey, improvement is improvement. :) Still on the methotrexate,, thats not going anywhere but i did drop the dose to 60cc's and i'm feeling better. no nausea yesterday! YAY
Take care everyone and have a great rest of the week!
t
Dec. 4, 2010
It dawned on me last night that many of my friends probably don't know what RA really is. Honestly, most people don't know what it is... so don't feel bad. I'm just glad you are reading this to find out. :)
Thank you to Kelly at RAWarrior.com (Dec.4, 2010) for this write up:
A Misnamed Disease: Rheumatoid Arthritis is a misnomer.
Rheumatoid Arthritis (RA) has an ill-fated name. Things sometimes do: spaghetti squash is not pasta; a hot dog is not a dog; we park on a driveway and drive on a parkway.
“Rheumatoid” is a reference to rheumatic fever which is not at all related to Rheumatoid Arthritis. The word “rheumatic” comes from an ancient Greek word for “flow,” which reflects a primitive understanding of medicine. By the eighteenth century, a similarity was noted between the painful symptoms of rheumatic fever and those of what we call Rheumatoid Arthritis.
Of course, we all know what “arthritis” means: literally, inflamed joints. Technically, Rheumatoid Arthritis is completely unrelated to the condition most people call “arthritis”: osteoarthritis.
Doctors call osteoarthritis by that name now so that it can be distinguished from Rheumatoid Arthritis and many other diseases using that word. Some do refer to Rheumatoid disease or autoimmune arthritis, but that can also refer to Lupus, Ankylosing Spondylitis, Juvenile Arthritis, or Psoriatic arthritis. Maybe we just need a better name for Rheumatoid Arthritis.
Rheumatoid Arthritis Is a Systemic Disease
Rheumatoid Arthritis (RA) is actually a systemic autoimmune disease which attacks primarily, but not solely, the joints. It is an incurable disease affecting the synovial tissues which surround joints and similar lining tissues of certain organs. Through a very complex process, various kinds of immune cells attack and eventually destroy otherwise healthy tissues.
In Moderate to Severe Rheumatoid Arthritis (sometimes called Progressive RA or Aggressive RA), many joints, or every joint in some cases, becomes painfully stiff, weakened, or swollen. Mild RA is distinguished from those cases since fewer joints, such as hand or feet joints only, are usually involved. In either case, tissues which support and connect joints, and eventually the bone tissues themselves are gradually destroyed. The result is dislocation, disability, and deformity, often leading to multiple joint replacements.
The Rheumatoid Arthritis disease courses
There are a few different courses which Rheumatoid Arthritis can take. Some patients will have remissions between active disease flares. RA can improve a great deal during the remissions. Only about five percent of RA patients will experience a permanent remission of all Rheumatoid Arthritis symptoms. The worst course of Rheumatoid Arthritis is one in which no remissions are seen.
RA is usually progressive, even in patients with periodic remissions. The more Rheumatoid Arthritis progresses, the more likely it is to move beyond the joints. However, RA also can begin in extra articular fashion.
Rheumatoid Arthritis can affect various organs including eyes, lungs, heart, mouth, kidneys, liver, blood vessels, nerves, and skin. RA patients also have a higher incidence of certain dangerous conditions including heart disease, stroke, periodontal disease, osteoporosis, anemia, vasculitis, peripheral neuropathy, lymphoma and other blood cancers. Exact causes for these facts are unknown.
What is the difference between Osteoarthritis and Rheumatoid Arthritis?
Sometimes, you can show how much you care by sharing what you know. But, other times, you can show how much you care by acknowledging what you don’t know.
A good friend asked me this week to explain the difference between Rheumatoid Arthritis (RA) and arthritis /Osteoarthritis (OA). I was really impressed with her. It took courage to admit she that did not know. Do you know how many people have asked me that? She is the first one.
How many people do I hear ask, “What is Rheumatoid Arthritis anyway?” Very, very few. They usually don’t already know. So, I wonder why not.
Anyway, that is the hand we’re dealt. So here is my short answer:
If you have a favorite tool and you use it a lot, it can start to get rusty and worn. That’s OA. You can sometimes clean it up with chemicals or a salt scrub. That’s like getting arthroscopic surgery done to clean up a knee.
Think of Osteoarthritis like rust
Who does generic osteoarthritis strike? The most simple answer is anyone who has used a joint excessively: mainly that means old joints and athletes.
Rheumatoid Arthritis is more complicated than osteoarthritis
It would be a bit more like leaving a brand new tool in a bucket of battery acid overnight. It is suddenly ruined. You better buy a new one.
That is the sudden destruction and disability of Rheumatoid Arthritis. Joints and their supporting tissues are suddenly destroyed and left disabled. Little holes in the bone called erosions tell the story of some erosive substance which has eaten away the flesh. And once it begins, the destruction continues.
The joints cannot be cleaned out on an outpatient visit. Frequently, joints must just be replaced.
Where does Rheumaoid Arthritis strike?
Joints, organs, nerves, muscles, tendons, and bones in children, women, and men of all ages, but most frequently between 30 and 50.
Thank you to my friend for asking that very basic question. I am grateful that she gave me permission to share, so I tried to give a simple answer. With a short answer, perhaps more folks will be able to understand.
For a more complete answer, stay tuned to Rheumatoid Arthritis Warrior. I know that my friend will because she cares. I know she cares because she told me what she did not know.
Thank you Kelly at RAWarrior.com. This was written far better than I could have ever said it.
Thank you to Kelly at RAWarrior.com (Dec.4, 2010) for this write up:
A Misnamed Disease: Rheumatoid Arthritis is a misnomer.
Rheumatoid Arthritis (RA) has an ill-fated name. Things sometimes do: spaghetti squash is not pasta; a hot dog is not a dog; we park on a driveway and drive on a parkway.
“Rheumatoid” is a reference to rheumatic fever which is not at all related to Rheumatoid Arthritis. The word “rheumatic” comes from an ancient Greek word for “flow,” which reflects a primitive understanding of medicine. By the eighteenth century, a similarity was noted between the painful symptoms of rheumatic fever and those of what we call Rheumatoid Arthritis.
Of course, we all know what “arthritis” means: literally, inflamed joints. Technically, Rheumatoid Arthritis is completely unrelated to the condition most people call “arthritis”: osteoarthritis.
Doctors call osteoarthritis by that name now so that it can be distinguished from Rheumatoid Arthritis and many other diseases using that word. Some do refer to Rheumatoid disease or autoimmune arthritis, but that can also refer to Lupus, Ankylosing Spondylitis, Juvenile Arthritis, or Psoriatic arthritis. Maybe we just need a better name for Rheumatoid Arthritis.
Rheumatoid Arthritis Is a Systemic Disease
Rheumatoid Arthritis (RA) is actually a systemic autoimmune disease which attacks primarily, but not solely, the joints. It is an incurable disease affecting the synovial tissues which surround joints and similar lining tissues of certain organs. Through a very complex process, various kinds of immune cells attack and eventually destroy otherwise healthy tissues.
In Moderate to Severe Rheumatoid Arthritis (sometimes called Progressive RA or Aggressive RA), many joints, or every joint in some cases, becomes painfully stiff, weakened, or swollen. Mild RA is distinguished from those cases since fewer joints, such as hand or feet joints only, are usually involved. In either case, tissues which support and connect joints, and eventually the bone tissues themselves are gradually destroyed. The result is dislocation, disability, and deformity, often leading to multiple joint replacements.
The Rheumatoid Arthritis disease courses
There are a few different courses which Rheumatoid Arthritis can take. Some patients will have remissions between active disease flares. RA can improve a great deal during the remissions. Only about five percent of RA patients will experience a permanent remission of all Rheumatoid Arthritis symptoms. The worst course of Rheumatoid Arthritis is one in which no remissions are seen.
RA is usually progressive, even in patients with periodic remissions. The more Rheumatoid Arthritis progresses, the more likely it is to move beyond the joints. However, RA also can begin in extra articular fashion.
Rheumatoid Arthritis can affect various organs including eyes, lungs, heart, mouth, kidneys, liver, blood vessels, nerves, and skin. RA patients also have a higher incidence of certain dangerous conditions including heart disease, stroke, periodontal disease, osteoporosis, anemia, vasculitis, peripheral neuropathy, lymphoma and other blood cancers. Exact causes for these facts are unknown.
What is the difference between Osteoarthritis and Rheumatoid Arthritis?
Sometimes, you can show how much you care by sharing what you know. But, other times, you can show how much you care by acknowledging what you don’t know.
A good friend asked me this week to explain the difference between Rheumatoid Arthritis (RA) and arthritis /Osteoarthritis (OA). I was really impressed with her. It took courage to admit she that did not know. Do you know how many people have asked me that? She is the first one.
How many people do I hear ask, “What is Rheumatoid Arthritis anyway?” Very, very few. They usually don’t already know. So, I wonder why not.
Anyway, that is the hand we’re dealt. So here is my short answer:
If you have a favorite tool and you use it a lot, it can start to get rusty and worn. That’s OA. You can sometimes clean it up with chemicals or a salt scrub. That’s like getting arthroscopic surgery done to clean up a knee.
Think of Osteoarthritis like rust
Who does generic osteoarthritis strike? The most simple answer is anyone who has used a joint excessively: mainly that means old joints and athletes.
Rheumatoid Arthritis is more complicated than osteoarthritis
It would be a bit more like leaving a brand new tool in a bucket of battery acid overnight. It is suddenly ruined. You better buy a new one.
That is the sudden destruction and disability of Rheumatoid Arthritis. Joints and their supporting tissues are suddenly destroyed and left disabled. Little holes in the bone called erosions tell the story of some erosive substance which has eaten away the flesh. And once it begins, the destruction continues.
The joints cannot be cleaned out on an outpatient visit. Frequently, joints must just be replaced.
Where does Rheumaoid Arthritis strike?
Joints, organs, nerves, muscles, tendons, and bones in children, women, and men of all ages, but most frequently between 30 and 50.
Thank you to my friend for asking that very basic question. I am grateful that she gave me permission to share, so I tried to give a simple answer. With a short answer, perhaps more folks will be able to understand.
For a more complete answer, stay tuned to Rheumatoid Arthritis Warrior. I know that my friend will because she cares. I know she cares because she told me what she did not know.
Thank you Kelly at RAWarrior.com. This was written far better than I could have ever said it.
Dec. 3, 2010
Hello everyone!
I had one crazy week! Thanksgiving was truly a blessing. Spending time laughing with family was the best. Sunday, when I had our Friends Thanksgiving... it was just as wonderful. I LOVE cooking for all of our friends!! You have no idea how much I enjoy spending time in the kitchen and cooking for all of you.
Mason, Marissa and I started on Saturday night with cooking a 16 pound turkey. We started at 5. Turkey was done at 9 and then I made stock out of what was left for later this winter for turkey noodle soup. YUM-O!!
I woke up on Sunday at 8am and started cooking the 20 pound turkey and preparing all of the sides! I had such a good time! I had the music on, singing and dancing! :) (yes, all by myself! lol) And I took my methotrexate shot.
By the end of the night, I would say about 30 people were here and ate. It was such a great time. By about 7pm I had hit my wall... I was exhausted. Finally fell in the bed around 10pm.
I took Monday off to spend with Marissa and Mason because they didn't have school. They were so excited to go bowling... and then I woke up. I COULD NOT WALK. The pain in my knees and feet was excutiating, they were swollen and red. I definitely over did it on Sunday. I was so mad, sad, and in pain that I couldn't walk. Mason, bless his heart kept checking on me every half hour till Marissa woke up. By the time I finally got downstairs (took me about an hour and a half), I thought a hot bath would make me feel better. So, I hopped in the tub and soaked for a while while the kids played the Wii. Now, what happened next was funny and sad at the same time. I was laughing and crying at the same time. I GOT STUCK IN THE TUB!!! I couldn't push myself out because my legs hurt so bad. MARISSA TO THE RESCUE!!!!!!!!!!! I called her in and she helped me get out. Bless her heart... she knew mommy's body was hurting and was so concerned. What a sweetie.
Probably needless to say, but we didn't go bowling on Monday. I tried to drive there but then I was so nauseous. Monday's havne't been good for nausea lately. I think the methotrexate dose is too high. (dr has since dropped the dose a bit.)
Tuesday was a BRAND NEW DAY! I felt soooo much better. I had my karate belt promotion that night. I didn't get my belt bc I have missed so many classes but the sensei told me that I am def a skilled student. :)
Wednesday: John and I went to the Rheumy dr together. I had my bone density scan (which came back normal. but she still put me on an osteoporosis preventative med) She also gave me a med for days like Monday. I didn't want to increase my prednisone back up. I want to get off that stuff!!! (Which I'm down to 15 mgs now).
Thursday: I drove to Columbus (left about 630am)and heard about a job that I had interviewed for. I didn't get the position but I'm more than ok with the reason that was provided to me. I know that I made quite an impression and look forward to working with that department quite frequently in the upcoming months. So, I will remain in training... and passing on the knowledge of Underwriting. :) I left the office at 6pm and then met up with a friend who has RA too.
My meeting with April (Thursday night)
April has had RA for about 8 years. She has gone through the guinea pig phase of medication (which I'm going through now). It was such a meaningful discussion for me. I learned so much from her. I now know that I have had RA for a LONG TIME. and I mean A LONG TIME. It was funny that when I would start to say something about a symptom, she would finish my sentance!!! she knew EXACTLY what i was going to say! I was amazed. I now know that my knee surgery was from RA. I now know that the "feathers" that we saw in my knee were from RA. Its a condition called chondromalacia. The cartilage literally peels off in sheets. That's why we saw "feathers" inside my knee hanging down (doesn't help that i've always been a runner). And now I'm missing my IT band on the right side from my surgery. We also talked a lot about herbs and immune system support. April contracted PML. PML is a deadly virus that attacks extremely low immune systems. It is a deadly virus. She has 3 lesions on her brain and is going through blood transfusions every week to try to rid her body of the virus. Because biological medicine (like Remicade- my new med that I will start in 2 weeks) basically kills the immune system (because that's what causes RA- an over active immune system, in the easiet terms), it leaves the patient wide open for invaders like viruses. Immunity boosters are imperative to fight anything and everything that will try to attack.
Friday (today)
We had a big meeting this morning with the VP of Underwriting. It went VERY well. I left the office around 11:30 and got home at 1:30. (have i ever mentioned that I hate the drive from Columbus to Canton and visa versa?) ;)
So, right now I'm sitting here waiting on John to get home from work. We are going to an organic herb shop tonight to see about some immunity fighting herbs. I need to start it now so I can be ready for my first remicade dose.
THEN ITS DATE NIGHT!!!!!! :) I LOVE DATE NIGHT WITH MY JOHNNIE.
have a nice weekend everyone.. I know I wrote a lot today but there was a lot to tell.
I had one crazy week! Thanksgiving was truly a blessing. Spending time laughing with family was the best. Sunday, when I had our Friends Thanksgiving... it was just as wonderful. I LOVE cooking for all of our friends!! You have no idea how much I enjoy spending time in the kitchen and cooking for all of you.
Mason, Marissa and I started on Saturday night with cooking a 16 pound turkey. We started at 5. Turkey was done at 9 and then I made stock out of what was left for later this winter for turkey noodle soup. YUM-O!!
I woke up on Sunday at 8am and started cooking the 20 pound turkey and preparing all of the sides! I had such a good time! I had the music on, singing and dancing! :) (yes, all by myself! lol) And I took my methotrexate shot.
By the end of the night, I would say about 30 people were here and ate. It was such a great time. By about 7pm I had hit my wall... I was exhausted. Finally fell in the bed around 10pm.
I took Monday off to spend with Marissa and Mason because they didn't have school. They were so excited to go bowling... and then I woke up. I COULD NOT WALK. The pain in my knees and feet was excutiating, they were swollen and red. I definitely over did it on Sunday. I was so mad, sad, and in pain that I couldn't walk. Mason, bless his heart kept checking on me every half hour till Marissa woke up. By the time I finally got downstairs (took me about an hour and a half), I thought a hot bath would make me feel better. So, I hopped in the tub and soaked for a while while the kids played the Wii. Now, what happened next was funny and sad at the same time. I was laughing and crying at the same time. I GOT STUCK IN THE TUB!!! I couldn't push myself out because my legs hurt so bad. MARISSA TO THE RESCUE!!!!!!!!!!! I called her in and she helped me get out. Bless her heart... she knew mommy's body was hurting and was so concerned. What a sweetie.
Probably needless to say, but we didn't go bowling on Monday. I tried to drive there but then I was so nauseous. Monday's havne't been good for nausea lately. I think the methotrexate dose is too high. (dr has since dropped the dose a bit.)
Tuesday was a BRAND NEW DAY! I felt soooo much better. I had my karate belt promotion that night. I didn't get my belt bc I have missed so many classes but the sensei told me that I am def a skilled student. :)
Wednesday: John and I went to the Rheumy dr together. I had my bone density scan (which came back normal. but she still put me on an osteoporosis preventative med) She also gave me a med for days like Monday. I didn't want to increase my prednisone back up. I want to get off that stuff!!! (Which I'm down to 15 mgs now).
Thursday: I drove to Columbus (left about 630am)and heard about a job that I had interviewed for. I didn't get the position but I'm more than ok with the reason that was provided to me. I know that I made quite an impression and look forward to working with that department quite frequently in the upcoming months. So, I will remain in training... and passing on the knowledge of Underwriting. :) I left the office at 6pm and then met up with a friend who has RA too.
My meeting with April (Thursday night)
April has had RA for about 8 years. She has gone through the guinea pig phase of medication (which I'm going through now). It was such a meaningful discussion for me. I learned so much from her. I now know that I have had RA for a LONG TIME. and I mean A LONG TIME. It was funny that when I would start to say something about a symptom, she would finish my sentance!!! she knew EXACTLY what i was going to say! I was amazed. I now know that my knee surgery was from RA. I now know that the "feathers" that we saw in my knee were from RA. Its a condition called chondromalacia. The cartilage literally peels off in sheets. That's why we saw "feathers" inside my knee hanging down (doesn't help that i've always been a runner). And now I'm missing my IT band on the right side from my surgery. We also talked a lot about herbs and immune system support. April contracted PML. PML is a deadly virus that attacks extremely low immune systems. It is a deadly virus. She has 3 lesions on her brain and is going through blood transfusions every week to try to rid her body of the virus. Because biological medicine (like Remicade- my new med that I will start in 2 weeks) basically kills the immune system (because that's what causes RA- an over active immune system, in the easiet terms), it leaves the patient wide open for invaders like viruses. Immunity boosters are imperative to fight anything and everything that will try to attack.
Friday (today)
We had a big meeting this morning with the VP of Underwriting. It went VERY well. I left the office around 11:30 and got home at 1:30. (have i ever mentioned that I hate the drive from Columbus to Canton and visa versa?) ;)
So, right now I'm sitting here waiting on John to get home from work. We are going to an organic herb shop tonight to see about some immunity fighting herbs. I need to start it now so I can be ready for my first remicade dose.
THEN ITS DATE NIGHT!!!!!! :) I LOVE DATE NIGHT WITH MY JOHNNIE.
have a nice weekend everyone.. I know I wrote a lot today but there was a lot to tell.
Nov. 23, 2010
I have waited a day to write this in hopes that i would cool off, calm down, whatever you want to call it... so here it goes.
Went to the RA dr yesterday. Had a list of 10 questions to ask... I wil keep my comments till after the Q&A.
1) Why am I always hot? Sweating all the time, sleeping, eating, sitting.. I'm sweating.
DR. I don't know. could be your prednisone
2) Will I always be in some sort of pain?
DR. Yes. a good reaction to RA medication is 50-70% pain reduction.
3) This past Saturday, I pulled out three handfuls of hair. Could this be a side effect of methotrexate?
DR. Yes.
4) My methotrexate injection sights are remaining as red bumps, weeks after the injection.
DR. (examined the spots) They do not look like an allergic reaction. You may want to take benedryl before the
injection, or try an ice cube on the area.
5)I think I've had RA for a lot longer than we originally thought (told her about when I was 22). Should we do a bone density scan?
DR. YES. AND seeing that you have been on prednisone for so long, we want to check for that reason too.
6) Why am I so moody?
DR. Prednisone is known to do that. Once we start getting to lower doses, you should see a difference. It could also be the fact that you are trying to deal with a life changing event here.
7) My hands are very tight. They feel like they are curling up. Why?
DR. This is a concern. You are on such a high dose of prednisone that this should not be happening. Once the prednisone is gone, you will be in a lot of pain. The methotrexate is not working as good as it should. We will need to start you on Remicade. Call your insurance and make sure they will cover it. I will give you a pamphlet on the medication. This is decision time Tonya. Do we make this jump? I think we should. But you are the one living with the pain.
8) I still can't sleep without sleeping pills. Why?
DR. The prednisone may be at fault here, or you may have a sleep problem. Once we go lower on your prednisone dose, we will see how it goes.
9) I am losing my voice for no reason. Any suggestions as to why? I've read that you have joints in your voice box. could these be affected by the RA?
DR. No, you can ask your family dr about that.
10) Can you check my lungs and make sure I'm breathing ok? I seemed to have had an asthma attack the other day.
DR. You sound clear. Check with your family dr about that.
So ?.. if i'm only expecting 50-70% pain reduction, why am i taking all these medications that could really do some major damage? People have asked that... I have asked that... and here's my answer. If you would have seen me back in July, or felt the pain that i felt when i had to go down the steps on my butt... you would understand why. If I don't treat this, I can guarantee I will be in a wheel chair before long. I want to play with my kids in the back yard. I want to be able to ride bikes with them, go trick or treating with them, go to disney with them. And I will.
I'm def not fond of being on a biologic. The "WHAT IFS" are scary in themselves. A good friend of mine contracted a brain virus from a biologic! It almost killed her. She is now doing blood transfusions to get the virus out of her system. I know that is a rare case... but its awfully close to home and it scares me.
The bone density scan is scheduled for Dec. 1 at 10:45 am, it will take approx an hour. I will prob start the remicade on that day too. Its a 2 hour IV transfusion, every 8 weeks (unless needed more or less, but every 8 weeks is pretty normal).
Yesterday when I left the dr office, I called the ins company to make sure the drug was covered (the cost of remicade is $1000 per vial). It has to go through prior authorization. I tried to handle this logically, and then the fear set in. I'm adding another drug to my body. This disease is further along that we all had guessed. Then i started to cry. I don't know why I cried. I know i have been able to handle anything that has come my way. I'm an overachiever. But i think the fear of the unknown still has a grasp on me.
One thing I do know, is that I'm a fighter, and I'm not going down without a fight.
t
Went to the RA dr yesterday. Had a list of 10 questions to ask... I wil keep my comments till after the Q&A.
1) Why am I always hot? Sweating all the time, sleeping, eating, sitting.. I'm sweating.
DR. I don't know. could be your prednisone
2) Will I always be in some sort of pain?
DR. Yes. a good reaction to RA medication is 50-70% pain reduction.
3) This past Saturday, I pulled out three handfuls of hair. Could this be a side effect of methotrexate?
DR. Yes.
4) My methotrexate injection sights are remaining as red bumps, weeks after the injection.
DR. (examined the spots) They do not look like an allergic reaction. You may want to take benedryl before the
injection, or try an ice cube on the area.
5)I think I've had RA for a lot longer than we originally thought (told her about when I was 22). Should we do a bone density scan?
DR. YES. AND seeing that you have been on prednisone for so long, we want to check for that reason too.
6) Why am I so moody?
DR. Prednisone is known to do that. Once we start getting to lower doses, you should see a difference. It could also be the fact that you are trying to deal with a life changing event here.
7) My hands are very tight. They feel like they are curling up. Why?
DR. This is a concern. You are on such a high dose of prednisone that this should not be happening. Once the prednisone is gone, you will be in a lot of pain. The methotrexate is not working as good as it should. We will need to start you on Remicade. Call your insurance and make sure they will cover it. I will give you a pamphlet on the medication. This is decision time Tonya. Do we make this jump? I think we should. But you are the one living with the pain.
8) I still can't sleep without sleeping pills. Why?
DR. The prednisone may be at fault here, or you may have a sleep problem. Once we go lower on your prednisone dose, we will see how it goes.
9) I am losing my voice for no reason. Any suggestions as to why? I've read that you have joints in your voice box. could these be affected by the RA?
DR. No, you can ask your family dr about that.
10) Can you check my lungs and make sure I'm breathing ok? I seemed to have had an asthma attack the other day.
DR. You sound clear. Check with your family dr about that.
So ?.. if i'm only expecting 50-70% pain reduction, why am i taking all these medications that could really do some major damage? People have asked that... I have asked that... and here's my answer. If you would have seen me back in July, or felt the pain that i felt when i had to go down the steps on my butt... you would understand why. If I don't treat this, I can guarantee I will be in a wheel chair before long. I want to play with my kids in the back yard. I want to be able to ride bikes with them, go trick or treating with them, go to disney with them. And I will.
I'm def not fond of being on a biologic. The "WHAT IFS" are scary in themselves. A good friend of mine contracted a brain virus from a biologic! It almost killed her. She is now doing blood transfusions to get the virus out of her system. I know that is a rare case... but its awfully close to home and it scares me.
The bone density scan is scheduled for Dec. 1 at 10:45 am, it will take approx an hour. I will prob start the remicade on that day too. Its a 2 hour IV transfusion, every 8 weeks (unless needed more or less, but every 8 weeks is pretty normal).
Yesterday when I left the dr office, I called the ins company to make sure the drug was covered (the cost of remicade is $1000 per vial). It has to go through prior authorization. I tried to handle this logically, and then the fear set in. I'm adding another drug to my body. This disease is further along that we all had guessed. Then i started to cry. I don't know why I cried. I know i have been able to handle anything that has come my way. I'm an overachiever. But i think the fear of the unknown still has a grasp on me.
One thing I do know, is that I'm a fighter, and I'm not going down without a fight.
t
Nov. 19, 2010
Stress is not a good thing for a RA patient. I have not been able to go to my yoga class for over a month now. BUT I have kept up on my bi weekly massage. However, my left eye has not stopped twitching for 2 weeks now... stress related? let's hope so.
I have been back and forth to Columbus working on a HUGE DNA changing project for the company. Not to mention, I can't sleep without sleeping pills. :( Last week, as we drove to the CAVS game, I had an anxiety attack. It literally felt like I was having a heart attack. This morning I woke up with the same feeling. It hurt so bad and it made me nauseous.
I'm going to be brutally honest here.. This is putting so much stress on me and John's relationship. I'm moody, uncomfortable in my own skin, and just over all unhappy. I'm still struggling with the past and forgiveness and that makes it even worse. I'm trying so hard to focus on the positives and the blessings that we have in our lives. At the same time, I'm dealing with this and i truly think its depression setting in. They say that RA and depression go hand in hand... I really don't want to be one of those statitistics.
As for pain, I've been in some. I didn't put this in my last blog, but my current prednisone dose was 20mgs up until my last dr appt at the end of Oct. She took me down to 17.5mgs now. And as crazy as it may sound, I feel those measly little 2.5 mgs missing. I need to start moving again, like every day. Riding my bike or something. RA patients need to move, as much as it may hurt, we have to keep moving or the crippling will settle in sooner.
I'm tired of looking in the mirror and not recognizing the person that is looking back at me. I want to be ME again. When I look in the mirror right now, I see exhaustion, black circles and overweight. This is not me.
I want to thank my friends that have stuck by me and checked on me though this. I need that and you so much. I think you begin to see who your real friends are when they take time out of their lives (even if its 5 mins) to check on a friend. I have always been the giver, and it truly is nice when ppl give back. That's a friend. SO THANK YOU and I LOVE YOU ALL.
t
I have been back and forth to Columbus working on a HUGE DNA changing project for the company. Not to mention, I can't sleep without sleeping pills. :( Last week, as we drove to the CAVS game, I had an anxiety attack. It literally felt like I was having a heart attack. This morning I woke up with the same feeling. It hurt so bad and it made me nauseous.
I'm going to be brutally honest here.. This is putting so much stress on me and John's relationship. I'm moody, uncomfortable in my own skin, and just over all unhappy. I'm still struggling with the past and forgiveness and that makes it even worse. I'm trying so hard to focus on the positives and the blessings that we have in our lives. At the same time, I'm dealing with this and i truly think its depression setting in. They say that RA and depression go hand in hand... I really don't want to be one of those statitistics.
As for pain, I've been in some. I didn't put this in my last blog, but my current prednisone dose was 20mgs up until my last dr appt at the end of Oct. She took me down to 17.5mgs now. And as crazy as it may sound, I feel those measly little 2.5 mgs missing. I need to start moving again, like every day. Riding my bike or something. RA patients need to move, as much as it may hurt, we have to keep moving or the crippling will settle in sooner.
I'm tired of looking in the mirror and not recognizing the person that is looking back at me. I want to be ME again. When I look in the mirror right now, I see exhaustion, black circles and overweight. This is not me.
I want to thank my friends that have stuck by me and checked on me though this. I need that and you so much. I think you begin to see who your real friends are when they take time out of their lives (even if its 5 mins) to check on a friend. I have always been the giver, and it truly is nice when ppl give back. That's a friend. SO THANK YOU and I LOVE YOU ALL.
t
Nov. 14, 2010
My husband and a very dear friend of mine suggested that I begin to journal about my past and present experiences with my Rheumatoid Arthritis diagnosis. I have thought about it, and have decided that they are right. I think ppl will learn from my experiences with this disease as it progresses.
Nov. 14, 2010.
I was diagnosed with RA on Aug 4, 2010. One day before my 32nd birthday. But before I go into what has happened since then, let me explain what has happened leading up to that day.
I have always been an athlete. ALWAYS. I ran track in high school and college, basketball and soccer in high school. I started playing soccer again when I was 21, AND I LOVED IT. When I was 22, my left forearm swelled for no apparent reason. It was painful to touch, red, and literally looked like a football. When I went to the dr, they couldn't find anything wrong with me (or so they said). But they decided to do a bone density scan on me. My bones came back as a 57 year old woman. at the age of 22...They told me to take calcium and sent me on my way. They did not check me for anything else. that was it. that was my visit to the dr. So, the swelling eventually went away and I sucked it up (the pain that is). Then it happened again. This time in my knee. I went to a new dr. Thinking he was an internal doctor, he would do something different... He was what I call a "door knob" doctor... You know the kind... They have their hand on the door knob the whole time they talk to you. Yeah, that was him. He put me on VIOXX. And honestly, it worked for the pain. Then they took it off the market due to heart and stroke issues. So I was left to "suck it up" because I had to be a hyperchondriac... or atleast I thought. I was playing soccer 2-3 times a week. My crawling up the steps after a game had to be because I was out of shape or something, right? So, I continued to pop Ibuprofin and tylenol. My husband at the time was such a trooper. He loved going to movies, and my knees would swell twice the size just sitting there for those two hours. He got to the point where he would get me those self adhesive knee warmers to wear just for the movie. I was in so much pain that I didn't want to go anymore. Through the years, I continued to crawl up the steps and soak in the tub after a game. And I accepted it because maybe i was a hyperchondriac, or just out of shape.
By the time I was 31, then the exhaustion came and symptoms worsened. I'm not sure if the exhaustion got worse or I just became more intuned with my body's needs but boy did it hit me hard. I got a new family Dr. This family Dr is AMAZING. He actually listens to me, sits down (no door knob dr here) and we talk. I've always been afraid to tell my dr's how I feel because they never listened to me before, they were so worried about getting to the next patient, instead of treating me. My Dr now listens to me. So when I started to tell him all of my symptoms, he was genuinely concerned. My fatigue had been going on for a while now, my cholesterol and triglycerides were (and still are) out of whack, I was in a lot of pain (knee, ankles) and I wasn't healing very fast. AND i was ALWAYS sick (bronchitis with asthmatic symptoms). I sang my daughter a song every night, there were times when I couldnt sing because I was so sick. I cried myself to sleep those nights along with other nights from pain.
After about 6 months of being on and off depression medication, fatigue worsening and a knee surgery. My Dr was growing concerned. From about May of 2010 through my diagnosis in August, we did about 6 rounds of bloodwork and different types of testing on me to get to the bottom of my issues. My worse days were in July, 2010. I was at my lowest point when I had to go down our steps on my butt. Literally, on my butt. I couldn't walk. I felt so helpless and LAME. Who has ever heard of a 31 year old, active woman not able to walk down steps??!! I couldn't go up either. I had to pull myself up or go up on my knees. Mind you, I was still trying to make a come back to soccer after I had my knee surgery in June 09, and after a VERY bad ankle injury in January 2010 (all my tendons were ripped). And I still was not healed. But darn it, I LOVE soccer. It is my outlet. And I want(ed) to play so bad. I tried to play a couple of games but it hurt to run so much.
This is when my Dr finally called me in and said to me "I think you have Rheumatoid Arthriitis. I"m not a specialist in RA so I'm going to send you a local RA Dr to do the diagnosis" Talk about scary. I had to wait to weeks for that appointment. All the meanwhile, looking RA up online and what it is.. Basically saying to myself "yeah, this is it. FINALLY an answer".In between the two Dr's visits, my family Dr prescribed me prednisone 15 mgs a day. THE PAIN WENT AWAY. I WAS IN HEAVEN. I actually remember running up the steps to the back porch and being thrilled that I could do that with NO PAIN!!
Aug 4, 2010.
I was nervous to go to this appointment. I walk in to the Arthritis Clinic and I'm the youngest by 30 years. I say to myself "this can't be it? Am I in the right place?" When I finally meet the Dr, she examines me, looks over my paperwork and says "Yes Tonya. You have Rheumatoid Arthritis. Your bloodwork is testing a low positive but still positive. We will need to start you methotrexate and 5mgs of prednisone.
If you know me, then you know i'm the "research queen". When I researched methotrexate, I literally sobbed. The side effects of this drug were so scary. I cried when i took my first dose of methotexate and it made me sick. I threw up all night. I called the dr the next day and asked for something else. Oh, and the prednisone stopped working. 5 mgs was not enough. I had to increase it back to 15mg a day. The RA Dr prescribed PLAQUINEL. I tried it for about 2 months. It made me exhausted. We cut the dose back, not tired anymore but then I couldn't move my right wrist. That was a RA problem. We had to go to the methotrexate- again. This time its an injection that I give myself every Sunday morning. I HATE needles! lol and I hate this medication but the benefits outweigh the cons so I will take the medicine, and curse the whole time.
Now for my mental status through this whole ordeal...
Scared of the unknown, scared that my life span is automatically shortened bc I have RA, depressed that I may end up crippled, depressed that I can't keep up with my kids, depressed that I won't be playing soccer anytime soon, , mourning my healthy body, angry, Pissed that I can't do anything about it. People say "stay positive" and I get that... hopefully that will come with time. But i was just diagnosed with a chronic disease. The word "arthritis" being attached to it, is misleading and people look at me and say "its just arthritis". I get so upset when ppl try to talk to me what what they THINK I have. Do some reasearch, and then come talk to me. As you can tell, this is the anger coming out about this diagnosis. I'm not happy about it. I'm scared. We are taking out kids to disney in march and I'm afraid I' won't be able to keep up. Will we need to get me a wheelchair bc i'll be so tired?? John tried to make me feel better by saying "yeah but then we'll get moved up to the front of the line!" :) that is funny... and i know he is dealing with this too. I can't imagine being told that he has a chronic disease that is going to shorten his life and will more than likely kill him. I can't imagine. And i know my mental status is effecting him too. I'm not a happy camper right now, i'm moody (thanks prednisone), I'm gaining weight (again, thanks prednisone) and i'm scared.
I plan on writing in my "journal" atleast weekly, maybe more. Feel free to follow. :)
t
Nov. 14, 2010.
I was diagnosed with RA on Aug 4, 2010. One day before my 32nd birthday. But before I go into what has happened since then, let me explain what has happened leading up to that day.
I have always been an athlete. ALWAYS. I ran track in high school and college, basketball and soccer in high school. I started playing soccer again when I was 21, AND I LOVED IT. When I was 22, my left forearm swelled for no apparent reason. It was painful to touch, red, and literally looked like a football. When I went to the dr, they couldn't find anything wrong with me (or so they said). But they decided to do a bone density scan on me. My bones came back as a 57 year old woman. at the age of 22...They told me to take calcium and sent me on my way. They did not check me for anything else. that was it. that was my visit to the dr. So, the swelling eventually went away and I sucked it up (the pain that is). Then it happened again. This time in my knee. I went to a new dr. Thinking he was an internal doctor, he would do something different... He was what I call a "door knob" doctor... You know the kind... They have their hand on the door knob the whole time they talk to you. Yeah, that was him. He put me on VIOXX. And honestly, it worked for the pain. Then they took it off the market due to heart and stroke issues. So I was left to "suck it up" because I had to be a hyperchondriac... or atleast I thought. I was playing soccer 2-3 times a week. My crawling up the steps after a game had to be because I was out of shape or something, right? So, I continued to pop Ibuprofin and tylenol. My husband at the time was such a trooper. He loved going to movies, and my knees would swell twice the size just sitting there for those two hours. He got to the point where he would get me those self adhesive knee warmers to wear just for the movie. I was in so much pain that I didn't want to go anymore. Through the years, I continued to crawl up the steps and soak in the tub after a game. And I accepted it because maybe i was a hyperchondriac, or just out of shape.
By the time I was 31, then the exhaustion came and symptoms worsened. I'm not sure if the exhaustion got worse or I just became more intuned with my body's needs but boy did it hit me hard. I got a new family Dr. This family Dr is AMAZING. He actually listens to me, sits down (no door knob dr here) and we talk. I've always been afraid to tell my dr's how I feel because they never listened to me before, they were so worried about getting to the next patient, instead of treating me. My Dr now listens to me. So when I started to tell him all of my symptoms, he was genuinely concerned. My fatigue had been going on for a while now, my cholesterol and triglycerides were (and still are) out of whack, I was in a lot of pain (knee, ankles) and I wasn't healing very fast. AND i was ALWAYS sick (bronchitis with asthmatic symptoms). I sang my daughter a song every night, there were times when I couldnt sing because I was so sick. I cried myself to sleep those nights along with other nights from pain.
After about 6 months of being on and off depression medication, fatigue worsening and a knee surgery. My Dr was growing concerned. From about May of 2010 through my diagnosis in August, we did about 6 rounds of bloodwork and different types of testing on me to get to the bottom of my issues. My worse days were in July, 2010. I was at my lowest point when I had to go down our steps on my butt. Literally, on my butt. I couldn't walk. I felt so helpless and LAME. Who has ever heard of a 31 year old, active woman not able to walk down steps??!! I couldn't go up either. I had to pull myself up or go up on my knees. Mind you, I was still trying to make a come back to soccer after I had my knee surgery in June 09, and after a VERY bad ankle injury in January 2010 (all my tendons were ripped). And I still was not healed. But darn it, I LOVE soccer. It is my outlet. And I want(ed) to play so bad. I tried to play a couple of games but it hurt to run so much.
This is when my Dr finally called me in and said to me "I think you have Rheumatoid Arthriitis. I"m not a specialist in RA so I'm going to send you a local RA Dr to do the diagnosis" Talk about scary. I had to wait to weeks for that appointment. All the meanwhile, looking RA up online and what it is.. Basically saying to myself "yeah, this is it. FINALLY an answer".In between the two Dr's visits, my family Dr prescribed me prednisone 15 mgs a day. THE PAIN WENT AWAY. I WAS IN HEAVEN. I actually remember running up the steps to the back porch and being thrilled that I could do that with NO PAIN!!
Aug 4, 2010.
I was nervous to go to this appointment. I walk in to the Arthritis Clinic and I'm the youngest by 30 years. I say to myself "this can't be it? Am I in the right place?" When I finally meet the Dr, she examines me, looks over my paperwork and says "Yes Tonya. You have Rheumatoid Arthritis. Your bloodwork is testing a low positive but still positive. We will need to start you methotrexate and 5mgs of prednisone.
If you know me, then you know i'm the "research queen". When I researched methotrexate, I literally sobbed. The side effects of this drug were so scary. I cried when i took my first dose of methotexate and it made me sick. I threw up all night. I called the dr the next day and asked for something else. Oh, and the prednisone stopped working. 5 mgs was not enough. I had to increase it back to 15mg a day. The RA Dr prescribed PLAQUINEL. I tried it for about 2 months. It made me exhausted. We cut the dose back, not tired anymore but then I couldn't move my right wrist. That was a RA problem. We had to go to the methotrexate- again. This time its an injection that I give myself every Sunday morning. I HATE needles! lol and I hate this medication but the benefits outweigh the cons so I will take the medicine, and curse the whole time.
Now for my mental status through this whole ordeal...
Scared of the unknown, scared that my life span is automatically shortened bc I have RA, depressed that I may end up crippled, depressed that I can't keep up with my kids, depressed that I won't be playing soccer anytime soon, , mourning my healthy body, angry, Pissed that I can't do anything about it. People say "stay positive" and I get that... hopefully that will come with time. But i was just diagnosed with a chronic disease. The word "arthritis" being attached to it, is misleading and people look at me and say "its just arthritis". I get so upset when ppl try to talk to me what what they THINK I have. Do some reasearch, and then come talk to me. As you can tell, this is the anger coming out about this diagnosis. I'm not happy about it. I'm scared. We are taking out kids to disney in march and I'm afraid I' won't be able to keep up. Will we need to get me a wheelchair bc i'll be so tired?? John tried to make me feel better by saying "yeah but then we'll get moved up to the front of the line!" :) that is funny... and i know he is dealing with this too. I can't imagine being told that he has a chronic disease that is going to shorten his life and will more than likely kill him. I can't imagine. And i know my mental status is effecting him too. I'm not a happy camper right now, i'm moody (thanks prednisone), I'm gaining weight (again, thanks prednisone) and i'm scared.
I plan on writing in my "journal" atleast weekly, maybe more. Feel free to follow. :)
t
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