Hello all, I hope everyone is doing well. I have some not so good news to report about my health. I do state I have lupus but rarely get into specifics of the disease. I have had issues with my kidneys for years but with a hospital stay and fluids they always recover. Well,my doctors have found that protein is spilling into my kidneys and it’s toxic. My kidney function is normally 60% and I’m at 30% now and with the toxin it will not bounce back. The 2 meds that are used to treat this condition have not worked for me. In my doctors words, our backs are up against the wall. This is not what I want to hear. Our next step is to triple my steroids and for me to get what is called “a blast” if high dose IV steroids for 3 consecutive days. Once I go back to the doctor in April if the level of protein hasn’t changed we must look at options of transplant. It’s funny because my doctor did not bring up transplant I did, that is why I love him he doesn’t want to anticipate it not working or getting me worked up on the possibility of it not working. I also asked a question in reference to treatment. If lupus is taken off the table and a person has toxic protein spilling into their kidneys are there treatments that they get that can be tried on me. He’s looking into this option as well. My family is so positive and trying to keep me up as well. But the fears and doubts creep in and I’m so so scared. If you have read this and you believe in the power of prayer, please pray for me and my healing. Thank you and God bless.
As I get older I fear losing her every day. I dread the day I may get a call that something has happened to her, maybe not necessarily death but just that she has been injured in anyway. I received a call from my dad over the summer that he had been in a car accident and simply him being able to make the call assured me it wasn’t that serious. The only loss was his 1992 Honda Accord that he cherished and still mentions to this day. I depend on both of my parents due to my limited physical ability because of lupus. My dad does more of the footwork for me but when I’m ill the only thing that gets me through it is my mom. I haven’t figured out a way to mend myself without hearing her voice. I am wanting her to record her voice comforting me and I keep putting it off but I will no longer do this, because we never know what tomorrow holds for any of us. I want to do so many things with her but I barely have energy to do the basic things for myself. I love just taking advantage of rides to my doctors appointments with either one of my parents just to have that one on one time with them. I always ask my mom to take me places for that additional time together as well. She always seems to have an excuse that she has to get out very early and this is a problem for me so it never seems to work out. I guess if I were honest and tell her I just want to spend time with her it would make a difference but, I just don’t. My dad is flexible I can call him at noon and ask him to take me somewhere at 2 and he is ready. My sister is way more independent than I am and has been since she was 18. Angie couldn’t wait to get out of the house and I tried to stay and then come back as often as possible thereafter. We are so different but she is my best friend in the world. We made up a secret handshake today, it’s so cheesy but it’s really cute and just seemed right for a 41 and 47 a year old to do…lol. I think about death often, I am not sure if it’s because I fear it or I just know I’m closer to experiencing it the older I get. It’s 2016 and I want to embrace life and let go of fear. With the terrorism we have faced as a country and in our world I have stopped doing a lot of things I never second guessed before. I don’t go to libraries because of the access of the building to anyone wanting to cause harm, I never started going to bible study for obvious reasons, and also no movies for me until they are released and I can watch them in the safety of my own home. I have let fear dictate a lot of what I don’t do and I’ve been ok with it but I’m bored, I’m sad that this is how my life is at this moment. I’m not satisfied anymore, I’ve been content living this way but no longer and my mom and how she continues to live her life is my motivation. My mom goes where she wants when she wants and fear isn’t a factor. I truly admire that in her. Yes, there are others that also have not let fear stop them from living and experiencing things but my mom has always been the woman I look to for direction and I’ve admired her my entire life. She would absolutely not like me writing this about her because she is a very private person and feels you don’t make certain things public, it’s not necessary. She doesn’t understand FB or any social media sites in which you share thoughts or photos with people you rarely know, it’s vey strange to her. At one point she didn’t want her picture on my social media period but, she has kind of given in to that a bit as long as she approves the picture first…lol. She and my dad also step in as good grandparents to Reece, my 19 month old Shih Tzu puppy when I need help while I’m sick. I must say my parents are the best in every way. Obviously there are somethings that we argue about and disagree on but at the end of the day you choose what is important over what’s not. My mom, my love, my friend. The woman that taught me how to be a lady, how to be proper, how to carry myself accordingly, how to enter a room with dignity, how to respect everyone and never not demand it in return. My mom is my sHERO.
It has been confirmed, at 41, I am going through menopause. I was reading my labs and it was a little difficult but it seems a normal range of your hormone level while going through menopause is at max 67 and I am at 122. This is normally in women going through menopause at a very late age, usually around 70-75. My doctors call me an enigma and this just helps that theory. My doctors response after the lab results was “serious menopause, WOW, no wonder you are so hot” in addition to this I am having another form of lupus starting to show its ugly head on parts of my body, so fun! My medications have been adjusted to hopefully stabilize this as well, it is called discoid lupus, basically lupus of the skin. I also will see my gynecologist in January to discuss my options moving forward with the hysterectomy. I am also still having kidney disease and we have to wait and see if the medication I’m taking now will reduce the amount of protein spilling into my kidneys causing them to slowly shut down. Worst case scenario I will need a transplant, I think I have spoken on this on a previous post. Surprisingly I have not been praying for myself lately. It is a little boy with a brain tumor that is fighting for his life. He literally had symptoms one day and by day 3 was in the hospital unable to walk or talk and losing most of his bodily functions. He has since started to turn around but his prognosis is not good. He is who I pray for as well as thousands of others, his story is not only on television but on FB and I thank God for everything he’s provided me with but to save Kyler Bradley, he is just a baby compared to me and going through so much more with an entire life to live. It’s funny how despite what you may be troubled with in your life it’s so easy to just place that to the side when you come across someone else that is worse off than you are. I don’t feel like I am a strong person at all, I let lupus defeat me. I cry and have pity parties for myself and feel as though I’m letting it win. There are t shirts and sweatshirts with sayings like “I may have lupus but it will never have me” or “I am fighting lupus like a girl” I feel like such a fraud when I wear these types of things because I am not fighting, I am a sucker, I give in to the pain and cry to my mother. I see so many of my lupie sisters working and doing things for their families and here I am at home day to day literally scared to go out and with no motivation and I blame lupus. I have let lupus hold me hostage and it’s gotten comfortable. I’ve spoken of this previously but I am going to a therapist. I have been motivated because I want to live a more social life and be around people. My parents and sister are extremely supportive of me seeking help. I am excited for my future once I begin to learn how to deal with certain issues that arise in my life. I tend to surrender easily and blame everything on lupus. I feel meditation may help me in getting through the painful flares that come with lupus, that at times seem to never end, even with pain medication. I ask that anyone reading this to whomever you pray to or worship prayer for me.
Having a conversation with my sister and mom the other day and as always we talked about a variety of topics, I then let them know about my menopause and they were shocked but at this point nothing really catches them way off guard when it comes to me and my medical issues. They are both very supportive with whatever I need at this point and that feels very good. When I told my dad he responded by saying, yeah I think that is what your moms went through a few years back, you are kind of young aren’t you? I told him it can happen to women in their 20’s. He was silent for a moment, yeah so do you have to have surgery for it. I was a little confused so I asked what he meant by surgery, he said to remove it. It? At this point I am cracking up with laughter, I told him it wasn’t a hysterectomy it was menopause and then as I thought about it, my mom had had a hysterectomy years back and he was confusing the two. So I explained that menopause is a women’s body doing the natural part that it is suppose to do at a certain point in her life. He understood and then we went on to talk about politics as usual…lol. I love my dad. Getting back to the conversation with my sister and mom, the topic of being moody came up in talking about their spouses. My dad is very moody and you never quite know who you may get on any given day. He could be so happy and jovial or very quiet and almost as if you have personally done something to upset him and he’s mad at you. I, unfortunately, am the exact same way. I have been this way since I can remember but, now from lupus and being on several meds that alter my moods dramatically, it has gotten worse. My sister made a comment that I was crazy, this offended me greatly. I don’t believe to be moody makes you crazy in all instances. I am also aware that my moodiness will make it extremely difficult if the time comes for me to connect with a man. I am a lot to take and I understand this. I think this is another reason why I have accepted being alone for my life. I am not sad about this but it concerns me because I do want to connect with people and not drive them away with the way that I act towards them at times. I can be so mean and cruel to my mom and sister specifically and then as soon as the remarks come out of my mouth I regret them. I go to apologize but I’ve done this so often it means nothing to them and they don’t believe me. They do accept it and tell me I need to work on this particular problem but I haven’t. I know my family accepts my apology but will someone that can simply walk away and doesn’t have to stay do the same. I doubt it. I have to figure out how to think before I speak. I am a sarcastic person as well and I will make remarks towards a stranger or a friend if I feel it’s a clever thing to say. This may insult someone or even offend them but it’s how I am. I have worked on this and I no longer have a loose tongue with those I do not know. Friends are still not off limits but, I don’t see them often enough these days to even attempt to have a conversation let alone be sarcastic. When I think of crazy, I think of slitting someone’s tires or keying their car not having an attitude for no reason whatsoever. This is also what terrifies me and lets me know I am not ready for a relationship. I never know what mood I will be in from one minute to the next and this is no way to ensure that I will have a healthy relationship when I act this way. I must address this problem before I try my hand at a relationship. I am ok with being single for the rest of my life but I would love companionship even if it never leads to marriage. Someone that I can talk to and confide in and that I know cares about my wellbeing and has my back, I guess that is a spouse, but not necessarily. I do miss dating and putting on my pretty face to go out and be a lady and sexy. I do miss that part of my life. It’s hard because right now, everyday I feel as though I have bricks tied to my ankles, my legs are so heavy with every step I take and the achiness is unimaginable on so many levels. I hate to talk about it because it seems I am just tying to garnish sympathy when fact it is just how I feel day to day and it’s my truth. When I am asked how I am feeling I just say ok, it’s easier and I don’t feel as though I’m begging for sympathy. So am I moody or crazy? Honestly, I think I’m a little of both. I will not take the time to follow you around town, or go through your emails, or your text messages. But I will ask questions if I feel as though what you have told me doesn’t add up. I can’t promise that I won’t say something smart or sarcastic from time to time if you leave an opening for me to do so. I am croody, my new term combining the two. Yep, that is me.
After sending my primary doc a message that I had been having hot flashes my title was his response. I then responded “you have to be kidding me”. At 41, but I have heard of women going through it in their 20’s. I go through a lot with lupus, coronary artery disease, chronic kidney disease, anemia, ulcers on my colon, and numerous side effects from medications. But this was one thing that I thought would not happen until much later in my life. I have never been married and have no children and honestly I’ve never wanted children but this occurrence is still affecting me in an unexpected way. I have had abnormal Pap smears for years and followed by biopsies, colposcopies, and several LEEP procedures (if you aren’t familiar, google it). In a nutshell, every time I’ve gone to the gyno for the past 10+ years I’ve had to have at least 2 additional procedures because of abnormalities and over time statistically it will become cancerous. I was expecting to get a hysterectomy in 2016, but menopause beat me to the punch. Unfortunately, despite my body doing this I still will have to undergo the hysterectomy to assure that I will not develop cancer later on. I’m on board with this 100%. But putting menopause in the mix wasn’t expected and is surprisingly saddening me. I am emotional on all levels, but I am also realistic with what hand God has given me. Some days it’s hard to accept and those are really bad days but they are moments that I somehow survive even though I feel as though it’s going to kill me because it hurts so bad. I went to my nephrologist today and we were going over my labs and my condition, despite changing medications isn’t improving but, good news it isn’t getting worse. I then told him about my recent bout with shingles for the 3rd time and that I am going through menopause. He looked at me and said “my darling, you simply can’t catch a break” it was so funny coming from a little Indian man with a deep accent. So I will be getting tested the end of this month to solidify that I am in fact going through menopause and once that is verified I will go ahead and schedule my hysterectomy. I hear some women say they feel less than a woman after menopause or the surgery. I don’t feel that way. Once a month I have the most unpleasant experience that lasts 7 days and I am looking forward to no longer having aunt flo visit, sorry if that is a little to much info but, it is what it is. This whole thing is hitting me hard and I will have to take some time to adjust and accept. That is my life, I’m thrown medical issues at every turn of life and I just roll with it. As most folks drive along a straight path with dips and highs and lows here and there. I not only deal with the dips and the highs and lows but I also have to take many detours along the way and I feel as though I can’t catch up to my counterparts ever. It was at my employer when I worked and those that I trained surpassed me. Not only was it difficult to keep up because of my illness but, depression set in watching those around me get promoted and my job performance suffered from that as well. I am going way off topic here. So I’m done . I wish you all the best.
This is a something I’ve been told as far back as I can remember. I was pretty or I am cute. This has changed due to my illness. I have gained a substantial amount of weight as well as developed rashes on my face and other parts of my body. I have bruising from medications and scars from multiple procedures and surgeries. For a man to find me beautiful is far fetched in my opinion. My sister tells me there is someone that will see past that and love me regardless. I’ve given up on this. But being beautiful or considering myself beautiful has nothing to do with a man or finding a man. It’s a confidence I once had just being me, I knew I was beautiful. It wasn’t about bring told it, it was simply having high self esteem. Where did this go? Will I ever get it back? When? I am 41 years old, a woman in her 40’s is coming into her own and going after what she wants with no apologies. Lupus has robbed me of so much, mainly myself, my being. I haven’t dated since before my ACL surgery in 2011. Prior to that my boyfriend passed away, so if I include that time I haven’t dated since 2010 when we met. Since then my life has changed dramatically. I lost my job, I lost my ability to walk for about 2 years while being in constant pain. These things changed my outlook on life. I felt as though God had forgotten about me, not that he didn’t love me but had other pressing issues and He felt as though I could handle what I was going through and you know, he was right. It was hard and I thought I’d never walk without a cane or needing a scooter to get around. How wrong I was. I’m not saying I’m painfree or can walk a flight of stairs but it’s manageable. I have come a long way. God knew and saw what I couldn’t even fathom. So back to my original question am I more than beautiful? I am intelligent, intriguing, insightful, delightful, humorous, compassionate, dependable, loving and the list goes on and on. Does being beautiful even matter in the big scheme of things afterall like they say looks fade but, the above mentioned will not. Continue reading
Church: to go or not to go? Is that a question? Or am I making a statement. As a child I went every Sunday with my parents and sister, it was expected and looking back I am so blessed that this was instilled as an important part of life. As an adult I have wavered on attending a building to praise Him. I do truly believe it isn’t necessary to go out to have church and that you can have it wherever you are able. (and no I don’t mean bedside baptist) IMO church is an experience that should enlighten you and make things more understandable as it is written but, not required to have a relationship with Him. I must admit my illness has played a huge part in my missing a lot of life activities. This is not an excuse it’s just my reality. If I were going “out” socializing with friends on weekends and not attending church I would be making excuses. This is not the case. I don’t know why I feel compelled to say this in such a public forum (I was originally going to post this on FB) but, I can count on one hand how many times I have left my home since I moved in last year that wasn’t medically related. Prior to that I’d lived with my parents since 2004 and during that time, except going to work, I remained inside, excluding myself from the world. My friends still invited me out and included me in activities but, my answer was always no and over time the invites stopped. I understood and knew that this didn’t mean my friends weren’t my friends anymore it just meant they were letting me get through what I needed to get through. I did lose some friends but that was ok because dealing with this disease is hard and if you aren’t able to understand it or want to understand it you are better off not in my life.
Living in a 4-5 BR home with 3 & 1/2 baths in an upper class neighborhood with my husband and 2 children. I would stay at home and have my own business run from there. It would be a lovely life and I prayed for it. That is all I thought I had to do to achieve something was to ask God for it and strive towards it and it would happen. Unfortunately for me, life happened. I dated a lot and was even given a ring by a beau but never even got close to marriage. Instead lupus happened and everything I thought was to be wasn’t to be. It didn’t phase me at first because I didn’t know the affect it was to have on my life long term. I was 20 years old and felt it was a temporary setback and it would pass. It did not and now at 41, it is worse than ever. I can barely move on some days and struggle to socialize because of the low self esteem that this disease has brought on me. You have to understand when I initially got lupus I ignored symptoms for as long as I could, so I still went out, I dated, drank, did everything they I should not have done to avoid the pain I was starting to feel all over. Until one day, at work, I realized my time was over. I was doing manual labor at the USPS and I loved my job and I was being vetted for a higher position to eventually rise through the ranks. My job consisted of moving mail to carriers and unloading semi trucks, I was constantly moving and I adored the mail men and their inappropriateness it was just fun but they never crossed the line. My supervisor actually propositioned me and now thinking back on it I should have been appalled but I was 21 years old and flattered and played with it to get different things. Little things, lunch at expensive restaurants, driving his sports car just dumb stuff. Anyway, in the morning, there were several businesses that came in for their mail before 7am and it was hectic for about an hour but I had a system that worked and it ran smoothly. This particular morning I was having an extremely difficult time and I remember i couldn’t even get my gloves on because my hands were so stiff. I tried to ignore it but I couldn’t. As the business reps came it I literally had to have them get their own mail and do my job for me, which was actually genius but my boss didn’t like it. I worked most of that day until I was in tears because of the pain. I told my supervisor I didn’t know what was wrong but I had to leave, she was shocked that I was walking out in the middle of a shift but I had to. I never returned. I type all of this to say that I thought my life would be so different and fulfilled in every way possible. It hurts when I think of what could have been but, I know that God has given me the life I was meant to live. I see friends with their families and it hurts me to my core but, to get upset is to have disdain in God and the life he has blessed me with. It is a hard life but I’m living it, not to the best of my ability, but I’m trying everyday to appreciate what I have and not to compare to others. So what I thought is in fact what I got, God has blessed me with what I’m meant to have when I’m meant to have it. He will also continue to bless me with what I am meant to have as I continue to live and grow on this earth.
It’s times like this that I wish I had a man in my life that was there for me whenever I needed him. I say this because I have been up all night and I wish I had someone to talk me through the pain. I have my parents but they like everyone else that is normal is asleep at 3:23am. My sister also is sleeping peacefully as she has to go to work in the morning. I would hope that if I did have a man in my life he too would be sleeping because of his six figure job he had to report to but, would wake up at the drop of a hat if I called. Insomnia has been a bigger issue for me lately because of my chemo treatments for my kidneys. It’s something that I know I have to go through and insomnia, on the big scheme of things is a mild side effect that will eventually go away. Well, it actually may not because it’s also a side effect of several meds that I am on but, hasn’t effected me as frequently as the cytoxan infusions has caused. On another note, I was playing phone tag with a therapist that my PCP referred me to and I gave up. It’s been about s week so I’m going to try again this week. I hate to beat a dead horse and because of my brain fog from lupus I can’t remember if I mentioned this in previous posts. As I type this I haven’t titled it yet because I do believe I am all over the place, which is nothing new. I love to write and I have been told by a journalist that I truly have skills but I have no knowledge of structure in how to properly write, I’m not sure if that is even the proper wording. I have always thought that writing is my passion but, in dealing with lupus it is a chore more than something I enjoy and look forward to. I was writing a book loosely based on my life years ago and it was really good. I had portions written and portions on disk, yes, a floppy disk. That shows how long ago it was. I have no idea where it is, but I truly believe if I thought long enough I could get it back and make it even better now that I have been through so much more in my life. I recently started a second book that is completely fiction, I had it all over, in notebooks my phone and computer, well something happened with my phone and I lost a huge portion of the story. It was so new in my head that it’s not possible for me to remember what I’ve lost. If I wanted to continue this story I would have to basically start over. Even if I were to complete a book, I have no idea what to do with it. Would I have to put out money in order to possibly make money? I have no idea. I recently read a book written by Jen Arnold and Bill Klein of The Little Couple, a TV show on TLC. Because of her career as a doctor and his background as a business man I expected a lot more. I could have written this book. The story, which was of their lives individually as kids growing up was fascinating but the way it was told was very underwhelming and disappointing. I assume because of their popularity it is a best seller. I was also surprised to find out that it was co written by a well knowN publishing company. I think if people would want to read about their lives why not mine, but I don’t have a reality show. I am an unknown person to the public. I would have to have some sort of marketing strategy to become relevant. I am currently only getting disability and it’s extremely hard to live off of, my sister and her husband live with me at the moment and pay me rent and that is what is sustaining me. Once they move out, it will be extremely tight. I do have good days but not enough that any company would feel confident in hiring me. I am not consistent and not reliable. This is so hard for me to admit but having lupus makes it that way. On many occasions I have cancelled on family and friends because of an unexpected flare of lupus. Family understands and unfortunately not all friends do and I have lost some because of it. One friend in particular, who meant a lot to me, in my opinion, criticized me at an extremely low time in my life. I do think in her mind she was encouraging me but her words cut me where I was already wounded and I have never healed from it and she has never contacted me again. I always thought there was hope for our relationship but earlier this summer my sister and I were both in the hospital and she visited my sister and not me. I can’t tell you how badly I was hurt, my sister told me that she didn’t visit me because she didn’t know where we stood or what to say. From my perspective a hug would have been a good start and we could have gone from there. I guess I expect people to do what I would do and there is no way I would not have not visited her had she been in the hospital. I do miss her but I do feel this friendship is over, we had been friends since we were 13 years old and I am now 41 and she will be October 11. She is honestly the only friendship I’ve lost, not that I had so many friends to begin with but, despite becoming a hermit and losing my social butterfly status, they have kept in contact with me, encouraging me with cards, text messages, emails. They have never given up on me and have chosen to let me take the lead and meet me where I am instead of wanting me to be where they are. They have stopped inviting me out because I would always cancel and I must admit it wasn’t because I was ill on all occasions. I became comfortable with staying at home. I even became fearful of going out so I stopped, I feared the way people would look at me and was so insecure about my weight gain and the fullness of my face due to the steroids. Dinner, movies, parties were all a no go for me, these things became a chore for me to do instead of a pleasure. This is where I presently am in my life. I know I have friends that love me and they have tried to sneak through my sister to get me out of the house but, she knew it could have negative effect on me and discouraged them and they understood. I keep all of their cards and notes that they have written as encouragement but, I’m still in this place of wanting to be in isolation. My life is relatively sad and it should not be. I think I have written about the therapist in a previous post, I am so sorry that I repeat myself on many occasions but it’s the brain fog and it’s not just in my writing entries it’s in life as well. I now know what the title will be for this entry. It’s now 4:28am and I have so many ideas running through my head about a book it’s crazy. I need to take advantage of this creativity. Thanks and be blessed.
i did it!!! Well part of it, I got up, got dressed, an accomplishment within itself. Then went to the hospital for labs to be drawn. I was so proud of myself, even though I had other plans to go other places but that didn’t happen. As soon as I got back to my car the only thing I was thinking was getting to my bed. My body and joints take over sometime and I give in. But I did do the most important task on the list!!!