It’s been awhile I have been on here, but I have been so fatigued. I had an incident yesterday that really scared me. I was wondering if any of you have had this happen…
I was pulling weeds in the yard. I was also taking breaks so I don’t think I over did it. First I got this feeling on the upper part of my arm. It was a burning feeling and hurt really bad. It then started to travel down my arm. It felt like hot razors were slashing my skin. I thought I was going to have to go to the doctor. After about 20 minutes it went away, but the pain is hard to forget.
After another break I finished up. It took about 10 minutes. I started to feel funny. Unstable and dizzy. I went inside and after going to the bathroom I was feeling worse. I thought maybe I needed to eat something so I got a bowl of cereal and while I was eating my body was getting heavier and heavier. My son was sitting with me, 13 years old, I told him to get the blood pressure monitor. By the time he got back with it I could barely hold myself up. Luckily my arm was on the table by the bowl. That was the only thing keeping my face from being in the bowl. My son got the cuff on and my blood pressure wasn’t to bad around 90/56 or so. It was jumping up and down and so was my pulse anywhere between 85 and 135. I could barely talk or open my eyes. I was slurring badly. The kids tried calling my husband and didn’t get an answer so I managed to tell them to call 911. It took a bit for them to translate what I was saying.
The paramedics checked everything and it all seemed ok, but I couldn’t move or really talk. I knew what was going on, but I couldn’t let them know that my mind was still active.
They got me to the hospital and they ran more tests. As usual they didn’t find anything at all. I’m so tired of that happening. At least this time they saw what was happening. I became more alert as time went on, but I could not move my legs from the knee down and my hands were not reacting properly. After a bit I was able to wiggle my toes a little but not fully and it took A LOT of effort.
After 5 hours I seemed to be back in working order. They let me go home since they couldn’t find anything. I was still shaky but could walk and talk normal. I got home and pretty much slept until a few hours ago. I am still shaky today, but I have finally been able to stay out of bed for a few hours. I do feel a nap coming on very soon.
Also for a few months I wake up and before I get out of bed I shake uncontrollably for almost a minute. I don’t know if this has anything to do with it.
I know I haven’t posted in forever. I have been having some flares that have put me down. They haven’t been too bad. A few days at the most. I also got to go on bed rest after my visit to the emergency room. I thought I was going to die. I thought I was having a heart attack it hurt so bad. No, it was pleurisy. I’m not disappointed it is most definitely the better option! LOL! It’s another one of those things that go along with Sjogren’s and Lupus.
I know we all cry at some point in our lives. It may be that we are lonely, depressed, frustrated or we don’t even know the reason. As you cry your tears stream down your face and you try to hide them.
Many of us can’t do that. I’m not talking about hiding them. I’m talking about crying. We may have those feelings but no matter how hard we try we just can’t cry. Our eyes do not produce tears. You may wonder what is so bad about that… Those if us with Sjogrens wish that we could cry.
When my grandma passed away I couldn’t cry. I felt the same sadness, but the tears wouldn’t come. At the time I didn’t know about Sjogrens. I thought that something was terribly wrong with me that I couldn’t cry.
Yesterday was not the best day for me. No matter how positive I am about my illnesses and my life I still have my bad days. Yes, I was crying last night… It was only out of one eye. The one that still produces some tears. It’s things like that make you step back and realize that you are different. This is my life and the only one I know.
So the doc thinks I’m having mini seizures. From my latest description and the meds I’m on that is the route we are heading in now. I’m on a new medicine, Lamictal. He said it is for seizures and very safe. Not sure what his idea of safe is when the warning says I can get a life threatening rash!?! LOL! What kind of rash is life threatening? I did find that Lupus can cause these types of seizures. My old Rheumy said I was in the beginning stages of Lupus. Does this mean I’m further along now? Blah, all this sucks.
For having a new diagnosis I think I handled it pretty well. I usually freak out and drink too much. I must be getting used to this shit.
So, we now have Sjogren’s Syndrome, maybe Lupus, Fibromyalgia, and Raynaud’s. I wonder how many more I can add before the end of the year.
I try my best to stay positive in life. Unfortunately it’s not always easy with illness. I started up with a flare last week. It wasn’t bad. Just some morning stiffness that worked its way out after a few hours. This week however, things changed. I was in so much pain that I could barely move. Joints that don’t usually hurt were hurting. This has been the worst flare yet pain wise. Even though I was in pain I was still OK. I could deal with it.
I called my doctor’s office the second day. I left a message that morning. I needed to get rid of the pain. They never bothered to call me back. Before the office closed I tried calling again. The line kept going to voice mail! They don’t close until 5pm, but apparently they don’t take calls after 12pm. Nice! Finally I couldn’t take it any more and called after hours and got the answering service. She put in a call to the nurse. After an hour the answering service called to see if I had received a call… no… so she put in another call. Finally after almost two hours I did get a call. The lady was really nice and told me to go to the Lawrenceville office in the morning. They would work me in. Great!
Now, being in the pain that I was in I did dread the hour drive there. I also dreaded the wait. On a day when I do have an appointment I have to wait two to four hours to see the doctor. I had no idea as to how long it was going to take. I woke up at 4:15am since I couldn’t sleep. I left at 8am. Due to morning traffic it took a little longer than normal. I was expecting that. I was supposed to be there at 9:30. I got there at 9:15. Not bad at all.
I drag myself up to the office and sign in. The office lady looks at me and says we don’t have you on the schedule. I explained that I had talked to the nurse last night and that she had told me to come in. Well, it turns out the doctor wasn’t in that day!!! She was going to reschedule me for another day. You have to first understand that they pull this crap all the time. By that point I was in so much pain and tired and just sick of them doing this so often that I ended up breaking down and crying in the office. I told them what I thought of their staff and that it wasn’t right to treat patients this way. I asked where the other doctor was. She was over at the Duluth office. I asked if I could go there. She called and they said they could fit me in.
Now in more pain and totally frustrated I drove again to the next office 30 minutes away. By the time I finally got to see the doctor I just wanted to curl in a ball and go to bed. I tried to explain to the doctor the issues that I had been having with the staff about calls not being returned and all the other mess. She just smiled and said she was busy and that we weren’t going to discuss that at this time! Really!?! Ugh, so I was the good patient and kept my mouth shut. I got my prednisone shot, a prescription for more prednisone and some pain meds and left. By the time I left, got my meds filled and got home it was 2pm. I left that morning at 8am!!! I still don’t understand why they couldn’t just call in the Rx. Those of you with chronic illness know that the last thing you want to do during a flare is sit in the doctors all day!
Well, after that ordeal and my short breakdown I am feeling much better today. The prednisone has started to kick in and I called a new Rheumatologist and set up an appointment for the end of the month. This one was just added to my insurance and is only 30 minutes away and I have heard good things about him. Now if I can just get the other office to send my records over…
When I was younger I’d wonder how my grandparents could get up at 5 am and stay up til 10. I’m still wondering that same thing today. In the past few years I have started waking up earlier, and earlier and earlier! I’m getting old! I’m supposed to be up all night watching TV and hanging out. Now, I wake up around 5:30 am and sit on the deck with my coffee. If I make it correctly.
Yesterday I forgot to put the coffee in the coffee maker and it’s the dispensing kind and my mugs are dark brown inside, so I didn’t realize it until I took my first sip and was trying to figure out why it was so darn weak!!! Then it hit me, there was no coffee in it! Lucky for me I put cocoa, cinnamon and Splenda in it so it was like drinking hot chocolate and not hot Splenda water. I did remember to put the filter in at least. I took extra care this morning with my coffee. I had to get it right the first time!
So anyway… yes I wake up at 5:30 every morning now. Between 9pm and 10pm I am ready for bed. Grandma used to stay up a little later than that. The thing is I pretty much have to take a nap everyday. At least 2 hours. I don’t remember Grandma ever taking a nap! Hehe! Like I said I am getting old. Well, I do realize it is just the fatigue from the SJS, but it still makes me feel old.
I go to the Neurologist today to find out the results of my neck MRI and my EEG. I have already had brain MRI’s and they didn’t find anything. It’s so sad to hear that. I was pretty sure I had something up there! So, I’m not very optimistic about the EEG. If they didn’t find anything in the brain MRI then I don’t think I’ll have any brain waves. 🙂
Gotta joke about this stuff you know? It’s the only way to get though it. Laughter is was gives us hope. Who wants to sit around feeling sorry for themselves all the time? Apparently there are a lot of people out there that do. I don’t understand it. My life isn’t over because of Sjogren’s it’s just different.
You all have a wonderful day today! Find something to laugh about!!!