Lupus and Love

I occasionally started to think about love and being in a relationship after my most recent Lupus flare emerged full force. I had a lot to think about and new ideas to get used to. I was being admitted into the hospital almost every month, my kidney function had plummeted, I began to experience extreme brain fog for the first time, was extremely forgetful, and thought that I was going crazy. I contemplated finding a therapist to talk to before I had a breakdown (which I thought awaited me in my near future). Every time the doctors found something else wrong with me and gave me a new diagnosis, I would just roll my eyes, so sick of yet one more thing to deal with. One of the worst parts for me was when I began to have difficulty doing the simple things: I would have to sit down and take more breaks (even if I had just gotten up out of bed, walked to the bathroom to brush my teeth, start putting on some make up, break; make my hair, get my clothes ready, break; get dressed.. you get the picture). My hands and legs would tremble or shake visibly and was worse than it had been over a decade ago when I was first on Prednisone as well as other medications. I was extremely frustrated with everything that I had to deal with on a daily basis (the pain, feeling sick and nauseous, the ridiculous amount of water retention, being uncomfortable, having difficulty breathing, the fatigue, etc.) By merely walking a few steps from one room to another was enough for me to need to sit down to catch my breath as my heart raced and I would lose my balance often. I felt like my capability to do certain things for myself was declining and was afraid that this was only the beginning of my new reality. Sometimes I needed help getting dressed, or getting in the shower so I wouldn’t fall, many days I couldn’t prepare a simple meal, and for over a month I could not drive. I have always prided myself in being independent and would rather do things on my own, no matter how hard it may be than to ask someone for help. I wouldn’t want to inconvenience anyone, but I also am stubborn about having to admit that I cannot do something for myself and admit that I need help. I was depressed for a while because I did not know what the future held for me and wasn’t sure if my declining memory and feelings of going crazy was temporary or if it was something that I would have to deal with for the rest of my life.

One thing that I had to come to terms with which was difficult was my desire to have a baby one day. It would have been preferable to do this years ago but I knew I still had at least a few more years before I would remove this option from my life. I always wanted a family of my own and have several children but after being diagnosed with Lupus, I would have been content with one. My mom always told me that I could not have a baby because she was worried about my kidneys and knew at least one person who had Lupus and the same kidney disease that I have and she had a couple of children which worsened her Lupus. But I’m hard headed sometimes and didn’t want to listen to her. I just wanted a baby one day. I felt like it was a life experience that I didn’t want to miss out on. I wanted to be able to raise my child, see him/her grow up, teach him/her, and everything else that came with having one’s own “mini me.” 🙂 I wanted to be there and be a source of encouragement in times of need, to praise/ congratulate after every accomplishment. I wanted to experience having grandchildren. It was a whole world that I never experienced before and did not want to miss out on. One of my first thoughts after my first hospital stay was, “Who is going to take care of Mia if I die?” I was incredibly sad. No one could take care of or love Mia like I do. She would think that I abandoned her. At no point did it ever come to mind that my kidney function might begin to fail or that Lupus would affect my body and life like it was so long after the last scare. I realized that with my life, there would never be any guarantees. Yes, I could make it through this rough time and go back into remission but there would be no promises that it wouldn’t return. In this case, how could I know this yet still choose to have a child if there was higher possibility that I would leave him/her motherless earlier than I should?

I was “happy” that I was no longer in a relationship. Although I did feel alone a lot and it would’ve been nice to have someone that loved me to be there and let me know that “everything would be okay.” Even if we didn’t know that for sure, it would have still been comforting. I felt like because I was “sick,” “imperfect,” and was limited in what I could and could not do on a daily or moment-by-moment basis, I would become a “burden” on anyone who chose to love me. I didn’t want someone to stay with me just because they felt that was the “honorable” thing to do yet silently resent me for it. I didn’t want to take their life away from them because they had to cater to me and how I felt that day. And even if I had found that “perfect person” who loved me immensely and wanted to be there for me, didn’t mind it at all, and who chose to stay every single day, how could I hold them back from living a full life? A part of me felt undeserving. I did not deserve to be loved. I also felt like it would be selfish to ask someone for such a thing. It touched me to hear about other people with Lupus who have significant others who do love them and choose to be with them despite it all. That Lupus and all that comes with it did not frighten them away. To make myself feel better, I think that being single makes my life easier because there isn’t a certain someone that I need to talk to every day no matter how bad I feel; I don’t have to feel guilty about not being able to go out again; and if I want or need to be alone I can do so without having to worry about hurting anyone’s feelings.

Often when I think of subjects that are undesirable to me, I just stop thinking. I’m a master at repression. These topics never fail to resurface though. One day I was wondering why do I feel this way? That love cannot exist in my life as long as Lupus does? Why do I feel like I don’t deserve love? Or that a person who could still love me wholly even though I had Lupus does not exist in this world? I stopped thinking again so haven’t figured that one out yet. However I have come to believe that it is possible to find such a person to love me. I know that right now is not the time and that I need to work on myself first and learn how to deal with my disease. Or maybe I just need to be more at ease with this disease.

Atrial Fibrillation Part II

I had my appointment today with my Cardiologist to go over the holter monitor I had to wear for two weeks and about the irregular heart beat that was picked up (Atrial Fibrillation). He explained everything to me and advised me to speak to my PCP about this so that my PCP can give me a referral (to be seen in the department I work in), probably put me on Warfarin, and have me follow up with the referral within a week or less. I was lucky enough that a spot was available tomorrow. I just wanted to get everything started before I have to go back to work next week Friday. I’m not ready however according to the Benefits Specialist who has our documented FMLA hours used replied to my email letting me know that as of May 2nd (when I return to work), I will not have FMLA anymore. I sent him another email just to re-confirm that but instead of asking for that, I asked him if I would be at zero or if I was already in the negative. I really don’t know how this happened since he gave me my FMLA unused balance over the phone before I submitted my TDI forms. When looking at my calculations, I thought I was safe to say that I had two weeks saved up that I would need to last me until mid November when I would need to get the FMLA re-certified.

I’m really not that thrilled about Coumadin, especially at my age. I don’t need to take a medication that is very important to manage as you don’t want your blood to clot nor do you want it to be too thin (especially if you fall and get a gash and start bleeding out). I remember reading someone else’s blog that also has an AFib and on Coumadin medication. If you have this, could you please tell me more about your story. Is it going to make my Lupus worse? Did you notice any more or worsening symptoms after you started the medication? Did you experience any crazy, notable, or merely something you had never experienced before while on Coumadin? I have done some research on it after I received the initial call from my Cardiologist’s nurse but most of it is “textbook” and because I have Lupus, I now know better than to listen to only what the textbook says. Especially since Lupus manifests itself differently in every individual at different levels. And sometimes the textbooks do not mention everything you may experience and Lupus is never predictable anyway.

I liken Lupus to a hurricane. It comes full force at you, devastating every thing that stands in It’s way (any organ, tissue, one’s nervous system, joints), anything and everything it so whimsically chooses. And since everything that I have mentioned are a part of “me,” and possibly “you,” we are essentially under a vicious attack at times. After the first round getting my Lupus and Membranous Glomerulonephritis under control, I was doing much better in comparison to what I had at that time come to terms with as my newly defined “life.” I was eventually told by my Rheumatologist and Nephrologist that I was in remission yet I still had to take a few medications (nothing heavy duty) and all of the symptoms of the disease didn’t go away. However looking back, it was good to still be able to go to work and not have to call in, not needing FMLA for years, and it was no longer necessary at that time to take any of those extra prescriptions that made me feel like I had a “pharmacy” in my kitchen cabinet. Many times back when I was going through my first major Lupus flare, I often wondered if the side effects from the medication was even worth taking it. The pills were supposed to basically slow down the progression of a disease that had no cure and also had the potential to lead to more diseases that have no cure. The Prednisone was the worst for me and as I lie there in bed back then, I just wanted to hurl those pills into the trash. My quality of life was nothing, I felt like I was dying inside, not only physically but mentally and spiritually. I felt like “the living dead.” But finally the hurricane “passed through” and my Lupus ended up retreating for quite a while, I naively believed that I was in the clear forever and just had to deal with different pains (ranging from “tolerable” to “severely cruel and intolerable”), to nausea, exhaustion, etc. It’s crazy how sometimes it takes me a while to name all of the different symptoms I have due to Lupus since I’ve lived with it for so long now. I don’t remember life without all of these restrictions and limitations. After being weaned off all the medication except for the few, it felt like the hurricane was finally over. I was able to do more than I could in months. But just like a hurricane, I have found that it was the eye of the hurricane I was living in while I was in remission. As soon as the eye had passed, the worst part of the storm was quickly approaching to destroy more than it previously did.

I’m not sure if I’ve said this before but I really don’t like people to ask me how I’m doing. I have gotten tired of saying, “Ok,” “better than usual,” “Eh,” “better in some ways, worse in others,” etc. I am through trying to explain to everyone what it’s like to have Lupus and exactly how I am feeling that day. Who wants to hear a “list of complaints” anyway? Isn’t that what it seems to come down to if you have never experienced anything other than good health, maybe bronchitis or a severe cold at some point in your life? Today a handful of people asked me how I was doing, I tried to avoid as many people as I could. My nurse at the Cardiologist’s office knows me and asked me how I felt. Can you believe that she asked me that same question about five times? So I had to find five different answers, or I guess I could’ve used the same one as she was not listening to my very brief answers. It was very irritating at the very least. I’m not excited at all, more so a little afraid and disappointed that I have to start Coumadin. Sometimes I want to get a Girl Scout sash and make illness, procedures, and surgery badges. Mines would almost be full by now. A useless and morbid thought, yet if I get one more diagnosis I am going to scream. Someone asked me the other day if I had Diabetes and my answer was, “Not yet.”

Another beautiful sunrise.

Another beautiful sunrise.

I Found a Lupus Conference!

I was so excited yesterday when I found out through a magazine that there is a group that meets quarterly on O’ahu. It seems like a mixed group as the main moderator has Sjogren’s disease, so I’m assuming it’s a support group/ conference for people with various auto-immune disorders. They have a Dermatologist set up for late this month as their guest speaker, a Rheumatologist that was highly recommended to me by a patient will be at one of the conferences, and I cannot remember the last one for the year. So I’m considering flying down either for the day or night. A “support group” was something that I never really thought that I needed in the past but this time around is worse and it would be nice to meet other people who understand. Perhaps I can learn something new from them, whether it be knowledge about the disease itself, how it affects the different organs, or how to deal with the frustration and other negative emotions that sometimes comes along with being exhausted, in pain, and feeling “sick” just about every single moment of every single day. It can wear one out.

The magazine was something that I would have never read and never seen in my life, however my mom’s friend had run across the article and passed it along knowing that I have Lupus and that I might be interested in it. I emailed the woman who wrote the article immediately and was surprised by her quick response. Since then I’ve asked her more questions as to what to expect (I need to know that this will be worth my time and money as a 20 minute airline ticket between islands is ridiculous and it’s cheaper to fly longer distances, across multiple states on the mainland for the same price)! And had her add me to their email list. I may have to go alone which I was hoping that someone would come with me (I know, big baby, right)?  🙂 I may have found a friend to come with me but even if it doesn’t work out, I’m going to do this. I have some friends on O’ahu so I was considering contacting them (or at least one or two of them since I won’t be there long). Or why not? I could stay a day or two longer.

In the meantime, Mia’s newest trick is learning to “count.” Which I know isn’t counting, but that’s what I call it. She can go up to 3 now. I show her the number of fingers (1, 2, or 3) and say the number out loud and put my fist out in front of her. She then taps my fist the amount of times that I stated and then she gets her treat. She loves her treats.