I had my first rheum appointment of the year, today. I really love my rheumatologist, because she listens to what I have to say as well as observes what I am not saying.
First things first. Of course, the nurse (Nicole in this case) has me step on a scale. I truly detest scales, but, what can I do, right? I am down close to 15 pounds since I had surgery last June (I'll go into that soon). So, I wasn't complaining. Even after the holidays, I didn't gain (or lose).
Second, we go to the room and she takes my blood pressure & temp. Again, I'm pleased. 130/89 isn't great, but it is better than I thought it would be considering the amount of pain I have been in since the latest arctic front arrived. Temperature was 98.1. I'm usually 97.6, but that flux is probably due to my hormonal activity.
Third, Nicole and I go over my medications. She is one very intuitive nurse. Being she has worked in the office so long, and also suffers from an AI disease, she can sense when things just aren't "right". "You are walking kind of slow, what's going on today?" So I told her, "I hate this roller coaster weather we are having, my body can't figure out what to do anymore. My feet, knees and hands are taking the brunt end of the pain."
So, it's time for my wonderful rheum to come see me. Her methods are AMAZING. She is so kind, concerned, and truly cares. When she talks to me, I sit in one of the chairs, not on the exam table. I told her what I (we) have gone through over the past two months. Doctors before her, and my primary care physician in the same office, I never felt comfortable discussing various emotional distress or stressful situations. I do not have this problem with her (them). My medical records are on a computer network. So, she sits there, reviews Nicole's notes, and then we talk. She doesn't look at the screen again until after we have concluded the ins and outs of what has transpired. All the while, though, she is typing, while looking at me, commenting on what I tell her. She reminded me that not only does this disease take a toll on my body, but my mind, too. And the same goes for my emotional state, it takes a huge toll on my RD/Fibro. I mentioned to her I used to have this blog, and she suggested I start it again, because I hold a lot inside me, and it isn't good by any standard.
I hopped onto the table, and she did her exam. I told her my feet have been really bad, as have my hands. I could tell she was concerned about my hands because she examined each one twice. Then, she tested all 18 fibro points. Only 1 or 2 were irritated. It was AWESOME for her to press on the ones in my back/hips and NOT have excruciating pain. She then had me take my socks off for my feet examination. Her first note, as I was removing them, was the swelling. Then as she pressed the joints, I nearly teared. Same with my knees. "Well, this is not fibro that is bothering you, this time. Your RD is definitely in a flare." With that, we both decided a steroid shot would work wonders. She also is having me increase the amnitriptoline that I take from only on Friday/Saturday to a couple other times in the week, because I need to relax my body and get the fibro under control before it goes nutty.
That was the extent of my visit today.
I will post about my surgery last June next.
Wednesday, January 29, 2014
Friday, September 9, 2011
Recap of last RHEUM visit and feelings since.
9-9-11
I need to make my appointments soon. Yesterday at 3:00 PM, my BP was 167/114 - and I couldn't go to urgent care or to the doctor. It was braces, pick up son, cross country practice, etc. At 9:30 PM, it was 147/101. I haven't checked it today. I seriously hate that Cymbalta raises my BP so much. When I was off it, my BP was normal.
My fatigue is crazy. Really driving me bananas.
I am just having a heck of a time no being blah.
For now, that has to be all. I will try to write more later.
8-26-11
I created a spreadsheet & graphs for the blood work I've had done over the past year, since I found a doctor who listened and diagnosed me with RA. I've noticed a few trends. One of them, the medicine is working to reduce the inflammation rated in my blood associated with RA. The second, my glucose likes to spike. Something I think I've had a problem with since pregnancy with my last babe. Third, that the RDW - I'll have to look it up again - is consistently getting higher and out of limits. Not sure what all this means, I'm not sure the rheum looks at the history like I have. I still need to make an appointment with a pain management specialist and one with my GP. I have also seem to have developed RLS.
With all this on my mind, and the pain, I've not been very social. I asked the twitter support group I found if anyone else had this desire to just give up and say I'm tired of this crap, take it away, and there was an overwhelming response of yes.
Things have gotten so crappy with my RA that I can't enjoy the MMORPG I like to play because of the hand movements required. I can go do stuff, like simple quests, but I can no longer heal a party or raid. Very disappointing, as it was my escape. So, I created my "alter ego" on twitter and a website where I write erotica type short stories.
Anyway, enough complaining. Hope you all have a great day.
8-19-11
Went to my rheumatologist today. Ever since I started on Cymbalta for the fibromyalgia & depression, my BP has elevated at least 20 point dia & sys. Which means, no matter how much pain I'm in (if it's from inflammation) I can't get a steroid shot or pills to help reduce it.
Explained that for about 4-5 weeks my pain has been getting increasingly worse. Mostly in the joints. My fibro points were NOT active today, maybe 1 was.
She asked if I was taking my medicines. I said yes. Religiously. I also have 2 children who will NOT let me forget to take medication. The pain is crappy. I explained that it feels like someone has crowbars prying my joints apart.
This is probably the longest she has spoken with me in the last 4 appointments.
She says she doesn't understand. One visit, I'm okay, another, I'm not. My inflammation levels are below the limit, so it's not the RA inflammation hurting me.
I also found out today, that sunlight will cause me to flare. Well, for the past month or so, I've been outside with band practice or cross country or just walking with the kids or even at the pool. I've lost 5 lbs.
She asked if I'm exercising. Yes. Walking when I can, not speedy, but I walk.
So, it's not fibromyalgia and not RA causing my pain, so she is sending me to pain management. I have the card for who she recommended, and the name of a PM doc my husband's boss uses. I am going to do more research before I make a decision.
Today's blood tests should be emailed to me Monday or Tuesday. All the normal stuff and a Vitamin D check.
She also suggested I go to my general doctor or my GYN to see if my hormones are out of whack.
There is still the fact that RA does NOT affect my neck/back so... what do I do there?
I need to make my appointments soon. Yesterday at 3:00 PM, my BP was 167/114 - and I couldn't go to urgent care or to the doctor. It was braces, pick up son, cross country practice, etc. At 9:30 PM, it was 147/101. I haven't checked it today. I seriously hate that Cymbalta raises my BP so much. When I was off it, my BP was normal.
My fatigue is crazy. Really driving me bananas.
I am just having a heck of a time no being blah.
For now, that has to be all. I will try to write more later.
8-26-11
I created a spreadsheet & graphs for the blood work I've had done over the past year, since I found a doctor who listened and diagnosed me with RA. I've noticed a few trends. One of them, the medicine is working to reduce the inflammation rated in my blood associated with RA. The second, my glucose likes to spike. Something I think I've had a problem with since pregnancy with my last babe. Third, that the RDW - I'll have to look it up again - is consistently getting higher and out of limits. Not sure what all this means, I'm not sure the rheum looks at the history like I have. I still need to make an appointment with a pain management specialist and one with my GP. I have also seem to have developed RLS.
With all this on my mind, and the pain, I've not been very social. I asked the twitter support group I found if anyone else had this desire to just give up and say I'm tired of this crap, take it away, and there was an overwhelming response of yes.
Things have gotten so crappy with my RA that I can't enjoy the MMORPG I like to play because of the hand movements required. I can go do stuff, like simple quests, but I can no longer heal a party or raid. Very disappointing, as it was my escape. So, I created my "alter ego" on twitter and a website where I write erotica type short stories.
Anyway, enough complaining. Hope you all have a great day.
8-19-11
Went to my rheumatologist today. Ever since I started on Cymbalta for the fibromyalgia & depression, my BP has elevated at least 20 point dia & sys. Which means, no matter how much pain I'm in (if it's from inflammation) I can't get a steroid shot or pills to help reduce it.
Explained that for about 4-5 weeks my pain has been getting increasingly worse. Mostly in the joints. My fibro points were NOT active today, maybe 1 was.
She asked if I was taking my medicines. I said yes. Religiously. I also have 2 children who will NOT let me forget to take medication. The pain is crappy. I explained that it feels like someone has crowbars prying my joints apart.
This is probably the longest she has spoken with me in the last 4 appointments.
She says she doesn't understand. One visit, I'm okay, another, I'm not. My inflammation levels are below the limit, so it's not the RA inflammation hurting me.
I also found out today, that sunlight will cause me to flare. Well, for the past month or so, I've been outside with band practice or cross country or just walking with the kids or even at the pool. I've lost 5 lbs.
She asked if I'm exercising. Yes. Walking when I can, not speedy, but I walk.
So, it's not fibromyalgia and not RA causing my pain, so she is sending me to pain management. I have the card for who she recommended, and the name of a PM doc my husband's boss uses. I am going to do more research before I make a decision.
Today's blood tests should be emailed to me Monday or Tuesday. All the normal stuff and a Vitamin D check.
She also suggested I go to my general doctor or my GYN to see if my hormones are out of whack.
There is still the fact that RA does NOT affect my neck/back so... what do I do there?
Friday, July 29, 2011
I swear I'm pushing people away
I was hurting before this week, but now it's even worse. It's not in my muscles. It's in my knuckles, neck and lower back. According to my blood work, though, I'm not having inflammation problems. At least, not 1.5 months ago I wasn't.
I took the kids to the pool twice this week. Great exercise. I know my rheumatologist will be happy to hear I haven't just been sitting. We have also walked around. Not speedy, mind you, but we have. I actually feel a difference in my body, which is good.
However, Wednesday when we went to the pool, my 4 yr old wanted to jump off the side. I was standing to catch him. I had to turn my head because my oldest jumped in and splashed me. Well, as my head was turned, my 4 yr old jumped and messed up my neck.
I know it will never happen, but I'm so afraid that my little family here will NOT want to be around me anymore, because I hurt. I try to do things, even if I really can't, because I still _want_ to be part of everything. I cry a little now and again and hope they don't see. Sometimes I am crying and no one can tell because tears won't form or fall. Guess that's another progression of the disease. Along with the fact I have to use nasal spray because ... well...
*sigh*
I took the kids to the pool twice this week. Great exercise. I know my rheumatologist will be happy to hear I haven't just been sitting. We have also walked around. Not speedy, mind you, but we have. I actually feel a difference in my body, which is good.
However, Wednesday when we went to the pool, my 4 yr old wanted to jump off the side. I was standing to catch him. I had to turn my head because my oldest jumped in and splashed me. Well, as my head was turned, my 4 yr old jumped and messed up my neck.
I know it will never happen, but I'm so afraid that my little family here will NOT want to be around me anymore, because I hurt. I try to do things, even if I really can't, because I still _want_ to be part of everything. I cry a little now and again and hope they don't see. Sometimes I am crying and no one can tell because tears won't form or fall. Guess that's another progression of the disease. Along with the fact I have to use nasal spray because ... well...
*sigh*
Wednesday, July 13, 2011
How I explain RA to my kids
Explaining RA or any autoimmune disease to children (or adults) is not easy. It takes a while and repeating myself and even then, there is no guarantee the people will understand. So, I drew out some stuff the other day. It took a while because using my hands is not something I can do for a period of time. I love to write and draw. I prefer the old pencil/paper method to computer because I type faster than my thoughts so most of the time I sit staring at the screen waiting for the next thought to pop into my head. Hopefully the images I am going to upload to my computer will post here decently.
This is the first picture.
The second - introducing the immune system.
This is a very basic look at what happens when a virus or bacteria enter the body. The WBC fight until the foreign antibody is dead.
This pain she is feeling (or he, just happens that autoimmune occur in more women then men), is constant unless she takes a pain killer. The stiffness every morning from 30-45 min (give or take) and the pain pays no regard to if it is cold or hot outside. When the barometric pressure increases, however, so does her pain.
This is just an minute example of what happens in her body. The WBC are attacking the tissues (in this case) between the bones in her fingers. Now, picture that happening all over her body, in all joints. Her body is begging the WBC and immune system to stop trying to attack it. Telling the system it's NOT the enemy. But it's not listening.
There is no cure for RA or any autoimmune disorder. Medication can slow down the process and make life comfortable and livable. One person can have more than one autoimmune disorder, too, and they are not only attacking the joints, but they will attack the heart, liver and other organs in the body. To these people who suffer, their immune system sees it's creator, owner, host as an enemy. And we all know, that the immune system will fight until the enemy is dead.
That last sentence, when I wrote it last night, made reality sink in for the first time in a year.
There is no cure for RA or any autoimmune disorder. Medication can slow down the process and make life comfortable and livable. One person can have more than one autoimmune disorder, too, and they are not only attacking the joints, but they will attack the heart, liver and other organs in the body. To these people who suffer, their immune system sees it's creator, owner, host as an enemy. And we all know, that the immune system will fight until the enemy is dead.
That last sentence, when I wrote it last night, made reality sink in for the first time in a year.
Monday, July 11, 2011
Life since increase of Cymbalta
Well, as much as I don't want to admit it, I think a lot of the pain I was feeling was from my fibromyalgia. It really sucks. I'm now on 60 mg of Cymbalta a day. I love the way it helps me with my depression, I just wish I didn't have the fibro along with it.
I do still have a lot of the hand, shoulder pain from the RA. I doubt that will ever change. At least I'm sort of managed now.
One thing that Cymbalta does that isn't good, is increase my BP. When I wasn't on Cymbalta or Savella, my BP went down considerably - back to normal limits. Now, I have to fight it again. Maybe now that I'm not in CONSTANT pain, I can start walking in the mornings, because I really need to get my body going.
Guess that's about all for this little update.
I do still have a lot of the hand, shoulder pain from the RA. I doubt that will ever change. At least I'm sort of managed now.
One thing that Cymbalta does that isn't good, is increase my BP. When I wasn't on Cymbalta or Savella, my BP went down considerably - back to normal limits. Now, I have to fight it again. Maybe now that I'm not in CONSTANT pain, I can start walking in the mornings, because I really need to get my body going.
Guess that's about all for this little update.
Friday, June 24, 2011
Latest Appointment
After accidentally missing my last appointment, someone canceled and I was able to get in on 6/22.
*takes a deep breath* I liked it when I first went into the office and she spent time with me. Now, it seems like she barely has time to check me out before she leaves the office. She asked where my pain is, I told her neck, shoulder hands and now my elbows (they never hurt before). She asked if the shot I received last time helped, I told her no, but I walked anyway. I did a week of exercise and it was ... so painful. I forced it and was down so much, it wasn't funny. Because my inflamation went down to normal, she said it was probably my fibro. Oh, and my blood pressure was 165/118. I've never been that high before. She said no shot because it didn't help and my BP was too high.
She had the nurse draw blood and give me a TB test (so we can be prepared for biologics if it comes to that). I go back today to get it read.
If the pain persists, then she will send me t a pain management secialist. Until my next visit in 2 months, I'm now on 60mg of cymbalta (up from 30), 2mg of folic acid (up from 1), 15mg of methotrexate (same), 2000mg of sulfasalazine (same). Tylenol or advil as needed during the day and a PM med at night.
By the end of my appt, my bp was 140/88.
A little frustrated. SSDD
*takes a deep breath* I liked it when I first went into the office and she spent time with me. Now, it seems like she barely has time to check me out before she leaves the office. She asked where my pain is, I told her neck, shoulder hands and now my elbows (they never hurt before). She asked if the shot I received last time helped, I told her no, but I walked anyway. I did a week of exercise and it was ... so painful. I forced it and was down so much, it wasn't funny. Because my inflamation went down to normal, she said it was probably my fibro. Oh, and my blood pressure was 165/118. I've never been that high before. She said no shot because it didn't help and my BP was too high.
She had the nurse draw blood and give me a TB test (so we can be prepared for biologics if it comes to that). I go back today to get it read.
If the pain persists, then she will send me t a pain management secialist. Until my next visit in 2 months, I'm now on 60mg of cymbalta (up from 30), 2mg of folic acid (up from 1), 15mg of methotrexate (same), 2000mg of sulfasalazine (same). Tylenol or advil as needed during the day and a PM med at night.
By the end of my appt, my bp was 140/88.
A little frustrated. SSDD
Monday, June 20, 2011
Months of pain
The last time I went to my rheum, was in April. I had bloodwork done and it said my inflamation was down. I was also given a shot. It was supposed to help with the pain so I could exercise more. It did nothing for the pain.
I'm still on 15mg methotrexate every Friday, 2000mg sulfasalazine every day, and 30 mg of cymbalta every day. I am limited to acetaminophen, ibuprofen or naprosyn. Tramadol conflict with cymbalta, so I can't take that.
I tried walking after the shot, and it was not good. I forced it, regardless. I then gave up, tired of the pain.
I have gone to taking acetaminophen or ibuprofen PM medicines when Keith is home or at night, so I can get some sort of rest or relief from the pain. I know it only masks the pain, but I have to do something so I can function.
When I'm in this much pain, I really would just love to be held, cuddled, anything of the sort, because it reminds me that I'm loved, regardless of how I am feeling.
All I have wanted to do the past few months was cry. Today the pains are so sharp in my shoulders, I swear someone has an icepick and jabbing it into the bones. My hips are the same way.
The new nsaid the doc gave me is useless. Nabumetone. It also comes with a huge warning about heart risks. For prolonged use or for those people who have heart problems, high blood pressure or high cholesterol. Makes me leery of taking it. I've taken 2 and have had no relief. I would think the medication would be like most pain relievers - be affective after 30 minutes or so.
I missed my last appointment, and it was even for the better, because I couldn't drive. I just had the dates mixed arond. I am fortunate that I get to attend one this Wednesday. I need to get a list of concerns/questions going so that I am more prepared. I wish I had an adult who could go with me, to facilitate the questions, etc.
I try so hard to not let any of this get to me, but lately, I just can't help it. I hurt so much and it's affecting me mentally. I think it's affecting my children, too. Yesterday was too much. I couldn't do ANYTHING and it was Father's Day. I was able to make it out to lunch. I apologized so many times. I am so glad Keith understands.
I guess I am just needing a lot of TLC right now.
I'm still on 15mg methotrexate every Friday, 2000mg sulfasalazine every day, and 30 mg of cymbalta every day. I am limited to acetaminophen, ibuprofen or naprosyn. Tramadol conflict with cymbalta, so I can't take that.
I tried walking after the shot, and it was not good. I forced it, regardless. I then gave up, tired of the pain.
I have gone to taking acetaminophen or ibuprofen PM medicines when Keith is home or at night, so I can get some sort of rest or relief from the pain. I know it only masks the pain, but I have to do something so I can function.
When I'm in this much pain, I really would just love to be held, cuddled, anything of the sort, because it reminds me that I'm loved, regardless of how I am feeling.
All I have wanted to do the past few months was cry. Today the pains are so sharp in my shoulders, I swear someone has an icepick and jabbing it into the bones. My hips are the same way.
The new nsaid the doc gave me is useless. Nabumetone. It also comes with a huge warning about heart risks. For prolonged use or for those people who have heart problems, high blood pressure or high cholesterol. Makes me leery of taking it. I've taken 2 and have had no relief. I would think the medication would be like most pain relievers - be affective after 30 minutes or so.
I missed my last appointment, and it was even for the better, because I couldn't drive. I just had the dates mixed arond. I am fortunate that I get to attend one this Wednesday. I need to get a list of concerns/questions going so that I am more prepared. I wish I had an adult who could go with me, to facilitate the questions, etc.
I try so hard to not let any of this get to me, but lately, I just can't help it. I hurt so much and it's affecting me mentally. I think it's affecting my children, too. Yesterday was too much. I couldn't do ANYTHING and it was Father's Day. I was able to make it out to lunch. I apologized so many times. I am so glad Keith understands.
I guess I am just needing a lot of TLC right now.
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