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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Ultrasound

So I went to my ultrasound appointment today and my nurse called me about an hour later to say that the results were normal. Although relieved I was disappointed that we still haven’t found out what’s wrong with me. I made a follow up appointment to see my primary doctor on Friday. The ultrasound was painful as the tech pressed down everywhere that I have been hurting.

One of my best friends has been texting me lately and has been suggesting things that I can try. At this point I feel like it wouldn’t hurt to try anything. She suggested a few supplements and now to be gluten free for at least 3 days. She told me to research gluten and gut inflammation. I recently found an article that had a direct link to this supplement that is supposed to address the five problem points of Fibromyalgia. The reviews that I have read are good so far and because it addresses chronic fatigue and pain I figured it can’t hurt to try it. I ordered a free two week sample and if I don’t cancel, they will send me a bottle a month. I just had to pay shipping/ handling for the trial. It took me a while to decide to buy it but I have nothing to lose and everything to gain. Like my life back. My friend is on a vacation right now so when she gets back she wanted a list of my meds and is going to try to help me. It means a lot to me. I miss her a lot and haven’t seen her in a long time. But anytime we talk, it’s like we were never apart. She helped me to decide on purchasing the product I mentioned. She asked me what it contained so I sent her the website address and she said that all of the supplements were good. I’ll talk to my doctor about it on Friday about it. I’m assuming it works because the lady who is on the website has Fibromyalgia and her husband helped make this possible for her. I know I can’t believe everything that I read and am always doubtful but it can’t hurt unless my doctor tells me otherwise. I would rather take the supplement than all the medications that I feel are poisoning my body. If it works then maybe I can get off of almost everything. That would be awesome. It has a 100% one year money back guarantee so why not?

Well it’s time for me to tackle last years tax paperwork. I found out if I don’t do them by the last day of the year then I lose my tax credit. The sad thing is that I have an accountant, I just haven’t been really good about keeping paperwork, statements, and receipts for my business in order and need to find as much as I can. I also closed two bank accounts earlier this year so I should have ordered them earlier this month but that didn’t happen. I don’t like to stress out and end up procrastinating sometimes which makes it worse when I finally start the task.

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.