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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Ad Nauseum

I like Latin and I’m random. And yea, nausea.

Lupus is so random. Last weekend I’m laughing on the phone with a friend and was able to go to the “other side” of the island with my mom to pick up something that she will gift to her aunt next week when she flies out to California. It has been miserably humid for the past few weeks, as storms move towards us from the distance which we hope will fizzle or veer away by the time it reaches us during this year’s hurricane season. I leashed Mia up that Sunday (now a week ago today) and jumped at the chance to get out of the heat and out of the house! Thank goodness for A/C in the car! If there is one thing that I miss about living on “the mainland” is central air & heat. I usually do not have the physical energy to go out but it was a good day. Later a couple of my friends and I were laughing over absolute silliness. I like those friends that have the same “not quite right” sense of humor as I do. I went to sleep happy, and looking forward to the work week.

At around 1:30am, I got up out of bed after tossing and turning, getting hot, then cold… hot and cold. Usually I can put my blankets half on and half off, or stick my leg outside of the blankets, and the temperature will even out. But it wouldn’t. Everything was uncomfortable. I felt nauseous. Attempts at drinking or eating something did not help. I was miserable. When I threw up, all that came out was what I drank and the little that I ate; mostly liquid, and then just bile. Sorry, I know that throwing up is never a pretty sight or thought. At around 4:30am I text my mom to let her know that I was sick and that I wanted to go to the doctor that day. I really was not sure if I should go to the ER for merely throwing up but I also was not sure what my doctor could do for me at this point. She wanted me to wait until 7 am when she was going to drive into town for line dancing. By 6 am I couldn’t take it any longer and walked over to her to ask if we could go to the ER “now”. I actually thought she had gone on her daily walk so I was going to ask my step father (who was on the phone) if he could take me but decided to check since I was already there if she might be in her room, which she was.

It was horrible. By the time it was over, I threw up about 9 times before I left home, 2 times at the ER, and 3 times when I was admitted and first dropped off at my room in the hospital. They gave me fluids, magnesium a couple of times, my EKG showed the presence of my A-fib, my C Complements indicated a Lupus flare. I don’t know what is going on, it doesn’t make sense. I was there from last Monday and then was discharged on Wednesday. I still felt weak and would have considered staying through the night when given the option to stay another night or go home, if it was not for Mia. I missed her so much. I was the second door from the elevator and imagined someone sneaking her to me. But knew that was not going to happen.

I didn’t want to be a burden to my mom. I already felt bad that she had to take me to the ER again, I didn’t want to be an inconvenience but I feel like it. I told her to do everything she would normally do. She was going to do her line dance practice, and usually will get something to eat with her brother & sister, and pick up anything she needed at the store. I could barely speak the first day any way. I was so weak, in a lot of pain, and unbelievable nausea that would not go away, not even with anti nausea medication through my IV. I just wanted to go to sleep. I knew I would find relief in sleep. I was over tired and felt like I was at Death’s door. Or at least that is the closest to “death” I have ever felt. Finally I asked for pain medicine which made me sleepy and I finally experienced relief for the first time in 9 hours. I remember later that day finally feeling the effects of the fluids, as if they were filling me back up with life. There were a lot of things to be grateful for. I’m just getting a little tired of getting sick.

Oh, by the way, I have “mild to moderate scoliosis.” I can discuss that further with my PCP this coming Friday when I see him anyway for a “routine follow up” appointment.

I feel a lot better now. Very grateful for the hospital staff. 🙂

Lupus and I

It’s been a long time since I’ve blogged. I’ve been on another leave of absence since mid September. I was at work one morning and didn’t feel well. I was extremely hot so I turned on my little fan at work. This was first thing in the morning. One of the nurses that I work with kept asking if I was okay. Most times when anyone asks me how I feel, no matter how bad it is, I will say, “okay.” It’s easier than listing everything that doesn’t feel right, especially when everyday is basically the same thing. I’m sure they really don’t want to hear it and I get tired of talking or even thinking about it. It’s also difficult for me to explain. I figured it would pass and it wasn’t a big deal. She finally convinced me to come with her to check my vitals. My pulse and blood pressure were high. She ended up calling my doctor over from next door and he ordered an EKG and stat labs. On the way down to the lab (after the EKG), my doctor caught up to us and said, “I know how you feel about the ER but I suggest you go there instead of the lab. There are changes in your EKG that are worrisome.”‘ I ended up getting admitted again (the 4th time in 9 months). This time it was a little bit different since it had to do with my heart. Something I never thought I had to worry much about. My Potassium was super low which is very dangerous and the changes in my EKG. My Cardiologist wanted me to be admitted until we could do a treadmill test (I can’t remember what it was called). I was released after that (the next day) and my doctor wanted me to stay out for a few months. I still am not sure what made it so serious that I had to stay out. Yet I was grateful because during this time, among other things, I had trouble breathing, strange heart beats, and now pain in my stomach and lower intestines (or at least that area) and a lot of throwing up. The pain and nausea started about 1 1/2- 2 months ago. On the 23rd, I had an Endoscopy. Everything looked fine. I was a little disappointed. Not because I want yet another thing to be wrong with me, I just wanted it to be fixed. On the 31st I have an Ultrasound scheduled. My liver enzymes more than doubled on my last blood test so my doctor wants to just make sure everything is okay. He said that he believes the test will come back fine.

During my last visit with my Rheumatologist, I explained in detail how the fatigue affects my life. For over 13 years I have told  my doctors and specialists about how I’m so tired but they have never done anything about it. Only saying, “It’s the Lupus.” I’m tired of being dismissed with that. His master plan was to rule out sleep apnea and wanted to see me again after that. It took about 5 months to see the sleep specialist only to find out it was a consultation. The good thing was the actual test was about a week later. My follow up appointment to go over the results will be in the second week of January. A total of 7 months. I know I’ve been living with this for a long time but sometimes it’s worse and I’m just over the fatigue already. I’m over a lot of things.

When I went through a major flare the first time around, I thought I knew what Lupus was all about and how cruel and unpredictable it is. Now I feel like that time was a walk in the park. I always thought that kidney failure was what I needed to worry about. Now I have to worry about my heart. And now that it feels like I get diagnosed with something new or have new problems every couple of months, I am beyond frustrated and at times afraid. I know that I’m not weak yet I feel like I can’t deal with this anymore. I tell myself that other people have it worse and that I should be grateful, strong, and deal with it. I am frustrated because I wonder if we’ll ever figure out what’s wrong with my “stomach.” I wonder how long this flare will last; what other organs my Lupus will affect. I thought I would be better way before December. It’s been over a year. I don’t remember how long my flare lasted the first time around but I also wasn’t hearing bad news out of the blue when it doesn’t feel like anything is very different than it usually is. Several people have told me recently that I look good. Better. I’m not sure if this is supposed to make me happy. All I know is that I wish that the outside was a mirror of what is happening on the inside. I’m polite though and say, “thank you.”

I haven’t been hungry for a long time and rarely eat. Most times I forget to do so. I’ve never been a fan of food as I’m very picky. In the last week I’ve been trying to eat at least once a day. However I still haven’t lost much of the weight I gained from the Prednisone. Except maybe the “moon face.”

I didn’t know that I had Fibromyalgia too. I figured that Lupus was very similar to Fibromyalgia anyway but my PCP told me on our last visit that I have both. Everything has also affected my emotions/ mood. I’m sure you guys know what I’m talking about. I know I mentioned it, but I don’t feel like talking about it right now. Sometimes I think it’s so crazy how autoimmune diseases are invisible but wreak so much havoc on one’s body. Not only do we have to live and deal with all of this but because no one else can see it, it’s easy for them to not believe you, think everything is okay because you “look better” or don’t “look sick.” I feel like the only time I’m believed is when someone else in the medical profession sees the extensive list of medication that I am on and my health issues. It’s like adding insult to injury when someone who has no idea says something ignorant and hurtful.

I was trying to work more on my business, hoping that maybe if I did well enough, that I wouldn’t have to go back to work. I love my job but sometimes feel that being able to create my own hours would be best for me at this time.  But sometimes I can’t manage to do anything at all. I know that no matter what, I need to go back to work on my scheduled date on January 18th. If not, I’m afraid that I will lose my job. I think that I worry too much about everything. I would be very disappointed if I have to cut down my hours (which would entail applying for a new position), hopefully in the same company, if they give it to me despite my health issues this past year.

“How Do You Feel Today?”

Almost everyday I am asked the same tiring question, “How do you feel today?” My mind starts spinning and every pain, the exhaustion that healthy people cannot relate to, the fear, and every sensation, comes to the forefront of my mind. I begin to feel everything at once and at times it is overwhelming. It’s a list of symptoms I do not want to spew out. Some of which I was able to temporarily “forget” as I immerse myself in my daily tasks (especially at work). The answer I am sure is more than the questioner bargained for. My answer? A simple: “Better,” “Good,” or “Fine.” Depending on who it is, sometimes I will just name off the most pronounced symptom of the day but leave the rest unsaid. I’ve had a couple of friends tell me that I can tell them everything, they do not mind. Although I am extremely grateful for their offer that touches me deeply, I do not want to impose on them and perhaps give them more than they expected.

Several weeks ago I met a woman who has Lupus and Kidney Nephritis. She is currently undergoing dialysis and I believe is on a list to get a new kidney. We only had about 15 minutes together as my family was on our way to meet for an early Mother’s Day dinner. It was awesome to finally meet her as we had been emailing each other for a couple of weeks. Although we made plans to meet before, those plans got cancelled due to “Lupus.” Most of the time she was the one who cancelled and apologized profusely for it. “Don’t worry about it. I understand.” I tried to make her feel better. I am usually the one that cancels plans due to Lupus so it was a change to be on the other side. It was nice to be able to understand and tell her that it was okay, we could always meet on another day.

C was feeling good that day and said she gathered a bunch of art supplies that she wasn’t using and was very excited to give to me. She hoped that I would love it and asked if she could drop it off. I was at my sister’s house that day. My sister was the one that wanted me to talk to C. She hoped that it would somehow benefit me to meet someone else that had the same health issues that I did. My sister asked C, “How are you feeling?” C began to tell her how tired she was, that she was going through dialysis several times a week, taking care of her children, and named off a few more symptoms she was going through. My sister listened intently, asking more questions to gain a better understanding of C’s answers.

My mind took me back thirteen years ago when I was experiencing my first major flare. My sister seemed to believe that everything was in my head. She would ask me how I felt but when I told her, she would scold me. She met a “doctor” who told her that it was my fault that I had Lupus. She told me I should get a second opinion. I told her I already did (she really wasn’t involved in my appointments or procedures/ tests). I can’t recall anymore everything that she said to me but I stopped talking to her about my health. It saddened me that my own family doubted me (and she wasn’t the only one). As she was listening to C, I wondered if she finally “got it.” That it wasn’t all in my mind but that there were other people that felt like I did. Another thing that I liked about talking to C was that when she told me what she was feeling, I understood what she was talking about. She didn’t have to explain herself. I wondered if my symptoms were “validated” in my sister’s mind now that someone else she knew told her the same things that I did.

Although I do not like to talk about how I feel to people that won’t understand, I felt like I could talk to C if I wanted to. Which brings me to the main point for this post. (Ah, finally!) 🙂 I have a question for all of you fellow Lupies and others that have an autoimmune disease, or any other chronic disease: “How do you feel today?” If you choose to answer, you can list off as many symptoms and feelings that you want. I promise, I can handle it. 🙂 And it doesn’t have to be limited to just how you feel today, you can respond with everything that you go through due to your “disease.”