My Boyfriend

I ran into my Pulmonologist in the hospital last week as I was leaving a friend’s room. She just had a baby girl. I was surprised to see him and didn’t know that he came to the hospital to see patients.

“Hey, how are you doing?” he asked as we began to walk together. We both said we were doing well. Oh, the title. I have no romantic interest in this doctor, I’m just silly and sometimes call people by a different name or title. Somehow he got the name/title “my boyfriend.” I don’t call him that, of course.

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I see him for my sleep apnea. I still don’t know how I ended up with sleep apnea. I don’t even snore. I can’t use my humidifier (I have a full face mask since February of this year). Sometimes my nose gets stuffed/ inflamed and I need to breathe out of my mouth so I can’t use the nose pillows. I’ve been so tired for years that if all I have to do is wear a silly mask while I sleep, I will. And I really don’t like the sensation of waking from sleep and feeling like I’m struggling to take a breath. At first I was surprised that I didn’t feel claustrophobic when I wore it. But lately with the miserable humidity, I can’t use the humidifier or the mask. The humidifier blows warm air in thorough the mask so I haven’t been using it. Just paying a “co-pay” for that and my machine monthly. But not being able to use the mask in two days really concerned me. He told me a quick story about how a patient mentioned how he would put ice & water in the humidifier. Instead of just water. That was an awesome idea & I couldn’t believe it never occurred to me to try it. It feels much cooler, doesn’t keep me up at night, and I can breathe and not feel like I’m only breathing in really hot air.  More

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Chronic Fatigue & Pain

There are a lot of different things we go through living with Lupus. Two of my more frequent “companions” are fatigue and different types of pain that travels through different parts of my body. Pain from debilitating headaches, various joint pains, nerve damage in both feet (which my previous Podiatrist adamantly insisted was NOT from Lupus), finger/ toe/ muscle cramps in all parts of my feet and legs, ferocious back pains, etc.

I don’t like to be asked questions about it or any other symptom I may be experiencing because it’s pretty much the same thing just a different day, I don’t want people to judge me or think that I’m complaining, or them trying to give me advice about what I SHOULD be doing (which is just their opinion & hasn’t helped yet), and don’t want to bore them to death. Sometimes I just wanted someone to listen, not try to “solve” my problems but it seems like they feel like it’s their duty to find a solution for me which my doctors haven’t figured out yet or maybe it’s just that they don’t know what to say. I would prefer just a hug.

I’ve tried to come up with the words to describe the pain and fatigue but have yet to find them to more accurately depict what I’m going through. Since coming across all of your blogs on WordPress, I have found something I really needed. To know that there are people who understand these symptoms in the context that only we can understand it as it all stems from Lupus. I understand that our experiences and degree of feeling any specific ailment is still different however it still means so much to me that people who understand are out there. In some posts that I have come across, I have found great definitions, analogies, and words to describe those things that I still cannot accurately put into words.

I was hoping that you could share the way that you describe the fatigue and pain and also any other symptoms that you experience. Any thoughts?

I wasn’t feeling the greatest today so canceled on my sister at first and in the morning had tried to explain to my mom how I felt. I finally decided to drag myself out of the house and see my sister since I can only see her on weekends and there’s no guarantee that I will feel any better next weekend. I found out from my sister that my mom thinks I’m having all of these pains and fatigue because of what she believes I’ve been eating lately. And plans to talk to me about it. Later after I left the house to drive to my sister’s, my mom was looking for me and text that she guessed that I left the house so I must be feeling better. What got to me was her tone. Lately it feels like everyday she is judging me or getting on my back about something. I can’t believe that even she is questioning how I feel and assuming that just because I was able to drive less than 10 miles away, that would mean that all of a sudden everything was perfect. I know it doesn’t sound like a big deal but my “touchiness” about this subject has a background that I wish didn’t exist.