Friday, January 9, 2015

Brain Fog

Brain fog is something that I deal with every day. It is frustrating and makes me feel like I am loosing my mind. It makes me mad and I am afraid of developing dementia like my grandmother. I am afraid of forgetting my family the most.

I keep remembering back to when my grandmother Meme was alive, before she was diagnosed with dementia, she kept forgetting the simplest things. As kids, we thought it was silly when she would call me Nugget, which was the name of her dog that died when I was 2 (I am currently 38).

Here is a great article that goes over Everything You Need to Know About RA Brain Fog.

Friday, April 4, 2014

My Latest Infusion

The past few months things have been going good. The Actemra has been working well and I haven't been in a ton of pain. I do have pain, but it is mostly bearable. Unless the Fibro flares, which it has been the past week.

I had my latest infusion on Wednesday. I weighted myself the day before and I was at 180. Ack! Some of the weight I lost had creeped back on. Last month I was at 177. Not good. But with the warmer weather finally here, my walks can start up again. When they weighted me in the hospital before my infusion, I was 184. Not sure how I gained 4 lbs over night, but I think their scales were off.

I had a new nurse this time. My normal nurse had retired the day after last months infusion. The new nurse, I forget her name, think it was Margie, was tiny and sweet. I knew my fibro was bothering me, but didn't realize how much till it was time to get the iv in and running. I have had the iv in my left hand for the past few months, so I decided to change to my right hand and give the left a break. OMG, no matter what the nurse did, I was in so much pain. Normally when they put the iv in, it feels odd, but doesn't hurt. The needle is thin, but long and flexible, like plastic. Of course after they insert it in my hand they move it in and out a little to get it in place. It kind of itches and tickles when they do that. Not this time. It hurt a ton. Once it was in and I was taped up and the saline was running, I got really light headed like I was going to pass out. Thank goodness the chairs we have at the infusion center recline. A couple of minutes laying back and I was back to normal.

I brought my laptop to watch a movie that I downloaded onto it. I put it on the little tray table and moved it over so it was near my knees and curled up with my headset on and watched "Catching Fire". I have seen it a few times and love it. My nurse hadn't seen it yet, so she kept coming over to "check up on me". LOL.

When the infusion was over and the nurse was taking out the iv, I got to experience a ton of pain I never want to again. Normally the super sticky rectangle shaped take they put over my whole hand hurts like the dickens when they take it off. We figured out that using a little alcohol wipe while removing it makes it not hurt at all. It kinda dissolves the tape. The other tape that they use, felt like they were taking my skin off.

Once home, me, Max and Abby curled up in bed. I was really tired after, mostly because I had been up since 3am. My sleeping issues are a whole other story. We slept for a few hours but when I woke up, I had a migraine and was really queasy. The hubby asked me earlier if I wanted him to bring home dinner, but I had told him no. But once I woke up feeling like this, I texted him and asked him to bring me home some soup.

All day Thursday I felt blah too. But not as bad. I still had a headache though. I had been popping Advil like candy trying to get rid of it. Now it is 2 days after the infusion. I am finally feeling better. I think because my dose of Actemra is based off my weight and height, that I had too much. I know what my weight was based on my scale. I know scales can vary, but this was nuts.

Sunday, November 10, 2013

8 Things To Know About Fibromyalgia

I just read this great article from AARP about Fibromyalgia. It's really nice to read an article that is positive and doesn't make Fibro out to be an illness that is only in your head.

8 Things To Know About Fibromyalgia

Tuesday, October 15, 2013

The fastest appointment yet

Yesterday was my rheumy appointment. I swear it was the fastest I have ever had. Normally this is a bad thing in my eyes, but this time it was great.

The Actemra is working, so I am feeling much better. Not as tired anymore. I don't need my afternoon nap very often now. I can make a fist with my left hand and almost a fist with my right hand.

The Tramadol takes away most of my pain. I still have little aches, but those I can deal with or almost ignore. The only time they really bother me is when it is going to rain or snow.

Two weeks ago I had my monthly blood work done and it showed that my cholesterol is awsome now. Thanks to the Simvastatin. My levels in everything are perfect. My dad takes it as well and says it is a miracle drug. I guess it is.

My liver levels, however, were not so great. They were very high. Almost three times higher than my normal levels. This freaked both me and my doctor out. He asked me to stop my methotrexate and we will repeat the blood work later. The Actemra can also raise your liver levels like the methotrexate can. I was praying that the Actemra was not the cause. I finally found a medication that is starting to work and didn't want it messing things up.

Yesterday at my appointment, we went over my blood work and he gave me my orders for another to test and see what my liver levels were at now after not taking the methotrexate for a couple of weeks. I got a call a few hours after getting the blood work done (I love how fast this lab is) and the doctor was happy to announce that my liver levels were back to normal. He asked me to stay off the methotrexate. Thankfully the Actemra can be used without the methotrexate.

Tomorrow is my next infusion. Looking forward to it. So sad I think. LOL

Friday, October 4, 2013

My Allergist Appointment

My appointment with my allergist was on Wednesday of this week. I got there 40 minutes early thanks to the directions on Mapquest. Anyway, I waited in my car for 20 minutes, then went in. I figured I had to fill out some paperwork. Boy did I ever.

I had a breathing test done first. I am asthmatic and have been since I was like 7 or 8. Anyway, what I though was good breathing, really wasn't. After that, I went into the room where I spent the next hour talking to my allergist about everything any anything that has triggered any kind of reaction to me since I was born pretty much.

I told her how my dad is deathly allergic to bees. He was legally dead for 4 minutes when he got stung once. I had a reaction when I stepped on a bee last summer. My asthma kicked in almost right away.

We went over everything I did this past weekend to try and see what might have triggered the face swelling. Right now, it is narrowed down to a food allergy (no kidding), more than likely nuts. Seeing how the Texas Roadhouse restaurant I was in has peanuts all over the place, and I ate some, that is more than likely the issue.

We also went over my current treatment of my asthma and made some changes. She added a spacer, something I haven't had since I was a kid. She also added Symbacort, but only if using the chamber with my Flovent does not make things better.

My Dr. also prescribed an EpiPen. This kinda freaked me out. She said that the swelling was a serious reaction and the next time I might not be so lucky. So now I have to carry around the epipens ever where I go. I had to ge a bigger purse so that they would fit in with all the other crap I carry around.

In a couple of weeks I go back to get my venom testing done to see if I am allergic to any bees. A couple of weeks after that test, I will have the skin test done to see what else I am allergic to.

Wednesday, October 2, 2013

Lots going on

I know I haven't posted here in a month, but lots of things have been going on here on the homestead that took me away from blogging so much. I have blogged a little on my main homestead blog though.

As for my health, well, I still have the rash on my back, but very little of it left. My rheumy said that it probably was not shingles and that it must be just some dermatitis. So, now we have no clue what this rash is from. It is still itchy like crazy though.

Sunday morning I woke up to a surprise when I looked into my mirror. My cheeks had swelled up so much, I looked like a chipmunk hoarding nuts. It didn't really hurt unless I touched my cheeks. Mostly tender around my jaw line.

This is a before/after picture to show now much I swelled up. The lighting was bad in my swollen picture, so that is why I am orange. The swelling was so bad that every time I bit down to eat, I bit the insides of both my cheeks. It hurt a ton, plus certain foods aggravated the cuts. I haven't eaten much because of it. Lots of soft foods that I don't have to chew, like apple sauce and yogurts.

I made an appointment with my primary dr to see her on Monday. Worked for me seeing how I was going to be in the area at the Apple store to try and get Matt's ipod fixed. No luck there. When my dr first walked into the room, the first thing she asked me was if I had mumps. She would not approach me until I told her that I had the immunization as a kid so this probably is not mumps. I might want to get a booster shot for it just in case. A friend of mine told me that lots of the immunizations we were given as kids, really did not do much for us and that for her personally, she has very little immunity built up to certain "childhood" illnesses.

My primary asked me a ton of questions and then called the head allergist at Mass General to ask what he thought it might be. He said maybe Lupus, but he wanted to see me. He also asked me to load up on either Benadryl or Zertec. Seeing how I take Zertec daily, he said to take 2 instead of my usual 1.

While I was eating lunch, I got a call from his office to make an appointment. Of course the receptionist I was talking to had no clue why she was calling me to make an appointment and when I tried to explain it to her, she was still clueless. She said that I could not be tested for anything unless I was off all allergy meds for at least days. I told her that I was told by the dr there to load up on Benadryl. She decided to put me down as a consult.  I'll just explain everything to the dr again anyway.

Well, off to my appointment. I'll let you all know how it went when I get back.

Tuesday, August 20, 2013

Little excitement today

Well, sort of exciting.

I have had this rash on my back for the past week or so. The hubby has said it is getting worse and I need to call my rheumy to make sure it is not an allergic reaction to my last infusion.

I call my dr and talk to the nurse. Told her what was going on and she said she will give the message to my rheumy and he will call me back.

Not even 5 minutes later, he calls me back wanting to see me in an hour. I so didn't want to have an allergic reaction to this medication because I believe it is working. I mean, I did manage to shuck a few dozen ears of corn yesterday and then cut the kernels off the cobs tonight.

I get to my appointment and my rheumy takes a look at my rash. He said it is not a rash of an allergic reaction. Whew! Thank God for that!

However, it looks like a shingles rash. Joy of joys! Just what I need. I is really itchy and it burns. I do not feel any pain however, but my Tramadol ER could be masking that up. At least I know the pain meds are working. last thing I need is to be in even more pain. Between my fibro and RA, I have enough pain to deal with.

My rheumy gives me a prescription for some medication to calm the shingles down. My understanding is it will always be in my body and it could flare. With my immune system soo suppressed between the methotrexate and the Actemra, the shingles decided to rear its ugly head and join the party. So now I have these huge horse pills that I have to take 5 times a day for the next week. As if I needed more pills to take. Grrrrrr. Oh well.