Where my Initial Research on Lupus and Membraneous Glomerulonephritis Ended

There was a lot I was going to write about but luckily I looked back to that first long posting about my basic history with Lupus and Glomerulonephritis and saw that I already mentioned a lot of that information. As this blog progresses I must warn you, I may sometimes forget and not be able to go through all my posts to see if I’ve said it before. I hope you can bear with me and just pretend it didn’t happen. ūüôā Or perhaps it would be a good “refresher” for you somehow. ūüôā I’m trying to be positive here and to give you fair warning.

So as I had previously mentioned, I did research extensively on my diseases, was frustrated, overwhelmed, when I tried to share this information¬†with my significant other, it was all in vain as apparently it was pertinent and important only to me. I felt even more alone, and as family members and other friends reacted in similar ways, I closed up even more. If you live with such a disease which is unpredictable I am sure you have experienced (but hope you haven’t) the feeling that you are even more alone than you thought. Especially when you had never heard about the disease in your life, or maybe you heard it mentioned, or know just a little bit about it, but it was always about someone else that you didn’t know. However you may know someone with the disease and when you got it, realized not only what they were going through but that you had absolutely no comprehension before about how they felt at all (whether emotionally, physically, especially when pain is involved, the exhaustion, etc.). I learned that I could not make future plans and stopped. I was taught by my dad (my parents were divorced by the time I was around 3 years old) but even though we at one time lived thousands of miles away at the extreme sides of our country (Kaua’i and South Carolina), he did his best to keep in touch with us, had us come out to visit him or vice versa, and at one time moved back to Kaua’i for a year or so in order for us to be able to see him more. Even though he was not always physically there and he had his issues, he taught me some very important life lessons, or at least I find them to be of importance and core values. One core value was if you say you’re going to do something, then you should do it. “Your word” is important and shows integrity and respect. So for me I’m always on time, even earlier when meeting someone and I always meet with them even though I may not feel up to it that day for some reason because I said I would and it would be rude to cancel at the last minute when someone else is looking forward to something that you both verbally committed to. But when I was sick back then, I had to stop making these commitments because I did not want to break my word. Once you broke your word, how could anyone ever believe anything you said again or trust what you said from then on? I had to live day by day because maybe I felt great or okay one day and then the next day I would be in severe pain, exhausted more than usual where it felt like an effort just to sit up and breathe air, bad migraines, nausea, or whatever symptom I might have that I did not plan on since Lupus does not work on a schedule.¬†There are no designated “off” days with Lupus or days that you will definitely feel worse or definitely feel better. It’s a day by day, moment by moment disease.¬† Not being able to make plans or commit to them also¬†contributed to¬†me closing¬†¬†up more as I wasn’t as social as I once was. And because my friends did not understand,¬†some got angry or hurt about it and eventually no one asked me to do anything anymore because I could never say that I would definitely do it.¬†¬†This caused depression, a lot of different things did back then and reoccurred last December when everything came back suddenly without warning, worse than ever and I ended up being admitted into the hospital for the first time ever in my life.

But back to the initial research. I pretty much found out that Lupus affected everyone differently.¬† I now viewed the majority of the information I had gathered as “textbook” or “theory” but not actual experiences. This subject was something I was more interested in. I knew that because everyone’s experience was different and there were various stages or progression of the disease in individuals, I would never really know exactly what would happen to me, however I felt it would give me an idea. Better than just a theory, this would be about real people that shared the same disease, just at varying degrees. To me to know something would be better than knowing nothing. Maybe I could be prepared just in case something similar happened to me, or know the possibilities of this disease and how kind or how ruthless it could be. In my search I ended up at message boards. I browsed around a bit at a few of them until I found one that I liked more than the others. I read main topics regarding Lupus itself, people’s stories, questions that members would post and the responses they received from other members who either went through the same or similar situation, or¬†provided helpful¬†information¬†or advice, or just to say that unfortunately they did not have the answer but wished that person the best of luck or some sort of kind word or some form of encouragement. It felt almost like a family, but not. But people who actually “knew” what each other was going through, most of them probably feeling just as alone and isolated as I did. I was shy and quiet for most of my life and did not post that often but did post a couple of questions, explaining what I had, what I knew, what I was now newly experiencing, and asking if anyone could offer me an answer as to what might be going on. I received great responses and eventually started to respond to the posts of others if I had anything to contribute. On one such site, which I haven’t been to in probably a decade, I did end up in contact via email with a woman from England. One day I had gone back on just to send her a message and check up on her but I never received a response.¬†I still wonder to this day about her when she pops into my mind. Did she just tire of the site like I did or get sick where she just couldn’t get on the computer? Was she okay? Did she pass? I hope the best for her and really for all of my fellow “Lupies.”

I had read online about Lupus support groups which existed in some places across the country, including The Lupus Foundation of America. Meetings that you could attend with other people who had Lupus. I thought that would be great, however I do not believe it existed in any of the areas where I lived. And again, being on the shyer side, it was more comfortable for me to “hide” behind the anonymity of a username on a message board. I had grand ideas in the last month, (though still horribly depressed), that I wanted to start a Lupus group here because when I researched it online, it¬†appeared that¬†one did not exist here. I emailed someone¬†from a website I found that I thought could help me find out if there might¬†be one that wasn’t showing up¬†online,¬†especially since I found this Lupus website¬† under¬†my state (Hawaii). I still haven’t heard back. Who knows, maybe that’s an old email that is no longer valid or no longer checked. I thought about what type of meetings I would like to hold, how it would be anonymous (kind of like AL Anon or AA since not everyone wants others to know their personal health business, especially when it comes to possible employment issues), it would be free to join, if we wanted to do events we could tentatively plan them and do fund raisers or something to raise money for any events or miscellaneous we would need (like maybe if we were raising money to do a walk for Lupus, if we were able to walk, we could participate and have similar t-shirts made to unite us as a group with our purpose/ name on the shirt and the fundraisers could help us with that since people have their own financial issues, especially with medical bills so I didn’t want to ask for “dues” of any kind. I wanted it to be free so that people who really wanted to or needed to come wouldn’t hesitate just because of the money factor. Money we raised for our walk (which wouldn’t exactly be set for a specific date because of the unpredictability of Lupus) but maybe over a time span that we all agreed upon and we could walk at anytime during that period and even walk on separate days to meet whatever our walking distance goal was. Maybe we could even have a family member or friend agree to be a designated walker for anyone in our group should that person not be able to participate for whatever reason. There were a lot of details to work out and it would be something everyone would have to agree upon but it was one such idea that I had. I thought the group would really help people and knew that they once had meetings here because a friend of my mom ended up with Lupus and she would go to the meetings but when I asked my mom about it she said that she thinks the meetings stopped and it had something to do with the people always asking for money. Because I work at an outpatient clinic, I thought that it couldn’t hurt to ask different providers or educators if they would be willing to either do an interview with me where I could ask questions that our group had to present them with the answers of a professional in that specific subject, including diet education. Or if they would agree to actually come to one of our meetings, even if for only a portion of the meeting to do a little speech and question/ answer session, I would have preferred that. I wanted to offer so much that I thought might not be offered anywhere else, especially for free. I would even try to find sponsors or whatever I had to do. Yet I knew I was still battling with my loss of kidney function, on so many new medications including 2-3 immunosuppressant drugs which made me even more afraid of getting into contact with sick people, my blood pressure was unbelievably high for the first time in my life and it wasn’t going down even though they doubled my dosage and then doubled that dosage. I was told I would have to wait for 4-6 weeks to see results but it was almost 4 weeks and I still wasn’t seeing a big difference. My blood pressure has always been normal or a little lower than normal which was fine, at my worst point in the hospital in December, I saw it go somewhere over 200+/114.¬† Since then as I was monitoring it on and off as well as seeing my PCP as well as a whole bunch of specialists, I would see my blood pressure then. Always 170-200/ 87+ – 100+. Since I have seen my new Neurologist last week I believe, he asked my Nephrologist if he could change my blood pressure medication from Lisinopril to Candesartan.¬†My Neurologist said it would help with my blood pressure plus help reduce my migraines which he was sure was Lupus induced. But when I mentioned the migraine part to two of my doctors, they said they¬†never heard of that which made me start questioning myself as to what I¬†may have thought I heard¬†but never did any research on it and¬†probably will one day just because I’m curious but am not concerned about it right now because all I really care about it is my blood pressure is going down.¬† Yesterday it was closer to “normal” and then today slightly below normal. Talk about being grateful and ecstatic for the¬†things that seem so small, that other people don’t have to concern¬†themselves with, that we take for granted when we have healthy bodies. Because my blood pressure is¬†going down,¬†if I understand correctly,¬†this means that I do not have to be so concerned about my Congestive Heart Failure that I was diagnosed with in December as much, that my kidneys are probably getting even better (function is rising back to a “normal” level where I don’t have to concern myself about changing my current medication CellCept¬†to a combination of those pills along with Cytoxan. I was highly concerned with the whole connection between my kidneys, my blood pressure, and my heart.¬† Now I feel relieved that I don’t have to worry so much about my heart, I just need to maintain this blood pressure,¬†which will in theory I believe indicate success in my treatment of the kidneys where I can possibly go back into remission within the year, maybe even sooner. Last I heard from my Rheumatologist, there is still some water in my lungs and I have to adhere to my strict fluid restrictions. I can have up to 64 oz of any type of liquid (drinks, soups, foods like grapes or whatnot that might have “juice” in them) which is very difficult for me as I would¬†drink approximately¬†five 32 oz of water a day at work alone. But I know I have to listen¬†because my kidneys aren’t functioning at 100%,¬†they aren’t getting rid of the “waste” it’s supposed to filter out and I still have edema. It used to be¬†extremely bad where my ankles were unbelievably huge.¬† I have bony feet and hands but you could see absolutely no bones, just grossly hugeness.¬†If I pressed down, I could press deep and¬†my skin would stay indented for a long time,¬†I don’t¬†even know how many minutes.¬†Later not only were my feet and ankles¬†swelling, but I was extremely swollen all the way to my thighs, then it started to show in my face (I gained a lot of weight in a short amount of time). I never went to my doctor because I had edema before and it so happened I had an appointment on day 3 of it where it was still bad and showed it to him.¬† All he did was press down on it (like I had a hundred times) and said, “Yeah, you’re swollen, see the indentation and how long it takes to go back to normal?” And that was that.¬† So I thought it wasn’t a big deal or surely my Rheumatologist would have said something, knowing that I had Glomerulonephritis as well.¬†(This is just one reason I refused to see him after only two visits).¬†At this time,¬†my edema is¬†not as bad¬†yet I still have swollen ankles, legs, face, puffy eyes, and sometimes no eyelids because of the water retention. I need to make the job of my kidneys as easy as possible right now. ¬†When nurses that I worked with finally talked me into going to see my doctor I did so and he ordered lab work for me immediately as the edema would be indicative that something might be going on with my kidneys or to find out exactly what was going on. I felt like the Rheumatologist pretty much did me a great injustice that could have perhaps cost me my life if I left everything alone because he wasn’t concerned about it. I trusted him at first to know better than I did and figured I was worried about it for nothing. My weight still fluctuates greatly because of this. I want to be 130-133 lbs. again at the most. Right now I’m at almost 148 lbs. On a January 29th visit I was 158 lbs. And I did lose more than the 10 lbs. but then gained some back. I’m not as concerned with that as I was with my kidneys, blood pressure, and heart because I know that once I get those things under control, I will get back to my target weight.

About two weeks ago I had my hair chopped off and had it cut a little bit more this past Saturday. I was at the point that I was completely stressed out (one thing was my whole health issue that I had been worrying about daily for the past two months and seeing no changes for the better), and then came unhappiness, stress at work & every aspect of my life, some of the medication like Prednisone makes me feel angrier than usual, more tired, less patient, etc. (a few of the¬†reasons I never wanted to be on it again), coming to terms with the fact that I could never have a baby at all.¬† I especially wanted to carry my own child so I could have a “mini me.” She would be a part of me (or he) and I would have this life to take care of and love and to teach wonderful things to. I didn’t want to miss out on this life experience and I wanted to experience having grandchildren, having a family of my own.¬†One of the first things I thought of when all of this started happening unexpectedly was about my dog (my “baby”) Mia. I love her so much it’s ridiculous to some and I am grateful for her every day of my life. I was afraid that I could not die because who would take care of Mia the way that I do? My mom told me she would take care of her for me if something should happen to me¬†and not to worry about such things. But I told her it wouldn’t be the same.¬† I told her Mia sleeps in bed with me and she would never allow Mia to sleep with her. I was afraid that because Mia didn’t know that I died, she would think I abandoned her after she had been sad for days or weeks waiting for me to come home. One thing I feel guilty about is when I had to make a rush decision and put in my two week notice at work in Colorado, bought an airline ticket, started boxing up things and mailing them back home. I finally had the money to move back home (it had been twelve years since I wanted to return and an opportunity came up that allowed me to come back). Hawaii’s quarantine rules are very strict and when I glanced over the paperwork, I thought I could get her to come with me under direct release because I always took her to the vet since I first got her as a puppy and she already had two rabies shots, she was an indoor dog so didn’t have rabies, never had fleas or anything, she was already spayed & micro chipped.¬†I knew that she needed to have a rabies titer but I thought that after¬†the results¬†came back all would be well. I was wrong. Even though it¬†showed that she did not have rabies (and she already had her two rabies shots previously and the second one was still good for about 2 more years),¬†there were two options. I could either have her come with me to Hawaii anyway but she would have to be quarantined on a different island for 120 days. The other option was she could wait 120 days where she was in Colorado and then I could have her sent to me and pick her up on¬†O’ahu. It was one of the hardest decisions, both “unacceptable” to me,¬†however the “lesser of the two evils” was for me to leave her with¬†a friend that Mia¬†was used to and knew¬†instead of me “selfishly” taking her with me and having her locked up in kennel conditions on a different island where I wouldn’t even be able to see her all the time but it sounded like they wanted you to come visit and play and¬†feed them everyday. I felt like it would be akin to me¬†“putting her in¬†jail,” that she would feel truly abandoned and confused. I couldn’t do that to her. Some told me to just leave her there and give her away to someone. How could I do that to Mia who I considered a part of my family? Who I loved so much? It seemed like one of the most callous things a person could say just because they never¬†felt an attachment to an “animal.” So I left her with a friend. My friend said that Mia would wait by the door everyday around the time I would return¬†home from work and she would not budge and go to bed but would wait¬†until it was very late before going to the bedroom. She started sleeping under the bed, my friend said¬†Mia seemed depressed. I felt such guilt. If¬†I knew I was going to move I would’ve prepared her a lot sooner;¬†also because I did not prepare her, if I knew that I would be faced with this decision, I would have stayed in a very unhappy situation and possibly¬†lose all the money I had¬†earned to move back home to paying not only my living expenses, but a friend who I was helping out who basically lived off of me for¬†a couple of years. But I would’ve waited for Mia to be fully prepared and then¬†leave if I still could and have her directly released with me. So if I was so worried about Mia, how could I with a good/ clear¬†conscience¬†¬†have a child when I don’t know what may happen to me in the future or that even if I go back into remission for another 10 years, I can never be assured that this won’t suddenly happen again. It would be selfish of me to do so and if I can’t leave Mia, how could I leave my own child motherless? Coming to terms with this realization added greatly to my depression. So after that second hospital visit in two months I went straight for the hair, which is what I sometimes do. My hair was finally growing out from the last time I did it about 4 years ago and was at the middle of my back so I was waiting for it to grow down to my waist again and then maybe consider cutting it off, or maybe just trim it to my mid back or something. I’m actually happy that I cut it though. I do feel like a “different” person, I have been more positive lately (which I thought would be impossible) since I was so negative about ever thinking positive thoughts in my life, my creativity in all my areas of interest are returning, I’m more inspired, and slowly I’m improving my life and living space in ways that are affecting me in positive ways and reducing stress and anxiety.

I like photos. I don’t like to be in them but I eventually want to post photos, maybe make a gallery. I did want to change my Avatar and personalize it so I was thinking about using a picture I have from last year. At some point I’ll post more. I don’t have many lately but I know my Aunty made me be in a photo when I really didn’t want to be because I was bloated that day, I did not like the fact that I had gained so much weight, and wasn’t feeling well that day. But I don’t even care what negative thoughts are directed at myself or my photos because I know a lot of it is caused by my current health condition. And I think it might help some people out, who knows. I remember when I was first diagnosed and I gained a lot more weight and got up to around 190 lbs. and I was so ashamed of any photos that I was “forced” to take part in. I wish I had one photo from back then which made me so depressed at that time that I even wrote a poem titled “Ode to Prednisone.”

I know I have fully strayed from topic. It’s almost¬†4 am and I was at work yesterday by 6 am and today I work at 7:15 am so I don’t know how this day will be for me but I really wanted to blog and I’ve been having issues sleeping.

However I do believe I touched on the subjects that I wanted to cover: I stopped researching the topics of my disease but started to look for online Lupus forums (Lupus boards) where I could read about other people’s experience or try to find posts that I felt were pertinent or similar enough to what I was going through to find out just how Lupus and Kidney disease could possibly affect me one day. I wanted to know the experiences of real people. One thing I noticed is when I get a new medication I will usually look it up and read about all about it including the negative side effects but when I would go to the message boards to check on what was going on with other people on the same medication and dosage as I was, multiple people were reporting the same negative side effects that weren’t listed on the other informational sites. I believe these online message boards can be of value whether you just want to browse for answers but better yet if you like it and trust it enough to sign up and become an active member where you can ask questions as well as respond to other people’s posts when you feel moved to do so. It’s always good to contribute in some way if you are able to. You never know what an answer, word of encouragement, or some type of acknowledgment or validation can mean to that other person who may be afraid and feeling alone. Maybe he/she is truly all alone without a family and friends that come and go, basically no one who really cares.

Goodnight for now. My baby has decided to leave the couch a while ago and sleep in bed. I miss her. And I need my rest. ūüôā Hope you have a great day or night wherever you may be.

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