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.
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!!!
I can’t believe this is happening. Closing June 2. It is unbelievable to me that this is my reality, but you know what, I deserve this, I have been through so much and I have worked so hard to save and improve my credit, all the while struggling with lupus every step of the way. It’s time for some happiness in my life and feeling of accomplishment. I am proud of myself and it feels good. I have only lived by myself for 1year out of my 40 years of life. It is beyond time. I am so excited to see what this new chapter holds for me. I am open to dating and getting my social life back. I definately don’t want to be in my house every night doing laundry or watching tv. It’s a new beginning for me that I am excited about. It almost feels like a dream and I will be waking up soon,,still in a little room at the end of the hallway of my parents home. I love and appreciate everything they have done for me my entire life, but it is time for me to be on my own two feet. But honestly, I will only be 5 minutes away…lol. I am 40 and have lived with my parents for 37 of those years. 1 year alone and 2 with my sister. It is 3:02 and I am wide awake, I love lupus and it loves me right back.
Insomnia strikes again, weird I slept from 1130 or so to 2a. I actually thought I was sleep for the night but the pain started and up I am. Wide awake, not a hint of drowsiness in sight even though I am yawning like crazy. This is something that I wonder if it will affect a relationship. Dating absolutely not. But once I have a commitment and spending some nights with someone what will waking up in the middle of the night as if it’s 9am. Maybe separate bedrooms, is that even possible? I think about these things at 2am
when I wake up…lol. Right now I am getting excited about the possibility of buying my own home and being able to live with my sister and binlaw, while helping her out.I say this because she has helped me so much over the years and I never thought I would be in a position to return the favor. God is GOOD!!! That has my heart skipping a beat right now. I know this is not concrete but it just maybe meant to be and that is exciting. If it is not for me, it is not, it’s that simply. But, I am choosing to pray that it’s for me and claiming it’s mine. I do see myself in a relationship, but right now, getting a home is my relationship. I am committed and I am falling in love with this home. The break up will be hard but we aren’t breaking up, I have become a stalker…lol. I have a great realtor, the house is overpriced, which is fabulous for my pockets. It is just about the seller understanding this and being flexible. There is an open house soon and I will submit my offer before so Lord, be with me. I am so nervous, but I am beyond ready for this. I have lived with my parents for my entire life with the exception of 3 years, 1 by myself, 2 with my sister. I am 40 now and I can take care of myself. Lupus does keep me down but it won’t keep me from obtaining my life goals. I can’t write how excited I am to be in this place right now. I have butterflies in my tummy as I type at this moment. I am back online dating and I don’t know if its going anywhere, but it is fun to just do a little communicating to see who is serious and who is not, you actually find out pretty quick. I recently had surgery on my foot so I actually may put an offer on a home without seeing the lower level, because I can’t do stairs but I don’t want to lose this home and I trust my sister and parents who will see it. In saying that, going out next week is not possible so to me it shows if a man is patient and willing to talk on the phone and do old school for awhile, maybe visit me at my parent’s home for a first date. That would say a lot about their character. But I don’t know, not really wanting to expose a date to family if it’s not necessary. God has blessed me beyond measure in my life. I have NEVER gone without, I have NEVER not had what I needed medically. My parents and sister are my guardians on earth. To now be in a position that I can do this without needing a dime of help is a phenomenal feeling. It is scary, don’t get me wrong, I am terrified, but I am ready, I am responsible with my $. I never thought getting on disability would afford me the ability to purchase a home and have a comfortable nest egg as well. My life is beginning and opening in so many ways. But, if this home isn’t my home that is ok, because my home is out there and it’s going to be
better than this one. I am totally committed to finding a home for me and my future, whether it’s alone or with a future spouse. Right now it’s about Erika and being happy beyond belief, enjoying living, experiencing new things and finding me again. That is it, finding Erika and I promise, the man that may come into my life is getting a blessing beyond belief and hopefully I will be too.
Ok, this is a blast from the way back past, but my definition is very different from Fresh Prince AKA Will Smith’s original version. He was a teenage boy wanting to gain freedoms that were well beyond what his years could handle. From his perspective, he wanted what he wanted when he wanted it and if his parents didn’t agree they simply didn’t understand. Well, fast forward 20+ years to a 38 year old woman in an awkwardly similar situation. I want to be able to re-introduce myself to society and start experiencing new things again, sounds wonderful right?? It would be except my parents are hesitant to let me. Their rationale is not my age or even my inexperience it’s because “they” don’t feel comfortable with it. So me regaining my independence and freedom depends on their comfort level, really?? Yes, there are times when I literally can’t bathe myself, I can’t cook for myself, I need rides to doctors and yes most recently needed them to be by my side in the hospital. But I am still a living 38 year young woman that wants and more importantly deserves freedom. My parents have raised 2 wonderful daughters, are we perfect, far from it, but we are loving, smart, make good decisions, are compassionate, giving and have never given my parents real trouble. We have never been arrested, we did not have to have to say the dreaded words that so many teenage girls do, we never were involved in drugs, just good girls. Even with all this it is as if they think I am so incapable that I can’t function without them. I will have set backs and I will need them but Lord I just want “MY” parents to understand.
October 12, 2011 was the last day I worked at a job. I say it that way because I have worked since then but unfortunately without pay. In therapy, I work, in everyday tasks, I work, so working for me hasn’t stopped and I assume it never will.
I am in the process of filing for disability and I am now in the appeals process because I was denied. Denial is the norm for 90% of applicants of disability, so it came as no surprise to me or my lawyer. In the meantime, I am fortunate to have a family that can financially support me and I am not in a position where I’m pushed to re-enter the workforce.
But, that can only last so long. As an adult you need somesort of independence and a sense of my own space and privacy as a woman. It is difficult because there are days when I do need someone to do simple things like fix my breakfast because it’s to painful to move. Well I will have to find the strength to do it, it comes with being independent. I am still a chronically sick person that will need help from time to time the rest of my life. And I am grateful that I know who I can depend on, no matter the hour or circumstance, they are there for me. As bad as I want to move, I have no idea where the energy is going to come from. I can barely move from my bed to the bathroom, I’ve gone from bathing everyday to every other day…ok maybe tmi, but I am an open and honest chick, there is no other way for me to be.
I want a life, does that mean dating, being social, absolutely I miss all of those things. An even scarier thought is that I’ve forgotten how to do these things. I am sure it’s like riding a bike, you never forget. One thing I do know is that I won’t need my dad running behind me holding on to my seat which now is a bumper…..
even though he would if he could.
I have been suffering from insomnia for quite awhile, despite taking ambiem at night, I am normally up until 4am. This started before I lost my job but is definately happening more frequently. In the past 10 months I have gone no where except on sister dates. So sad, but it’s my life. I haven’t met any new people or come in contact with people except when going to doctor’s appointments and they are all elderly. My life is pretty depressing and I feel I need a change of scenery to get me motivated again. I am anxious about what is to come and making decisions on my own. I am starting to look at apartments locally now and depending on what happens later on this summer I may be looking elsewhere. I am sooooooo excited and this is the first time in a long time. It feels good. The only thing I am concerned about is when I spoke to my lawyer for disability he was pleased that I lived at home so I will let him know my plans and hopefully that won’t in anyway affect me getting disability. I do need alot of assistance day to day, but I also know that I need to learn to navigate myself through certain situations because sooner or later I will be alone. Reality is scary and it hurts but it’s real.
At this point, I know I’m moving I just don’t know where. I am thinking about moving south while I wait on my disability decision, but then again I want to stay closer to my parents, who are my security blanket. It’s time to let the blanket go, don’t ya think??? With my illness it’s scary as hell to think of getting sick without my parents to comfort me, but it must be done. Literally, as I am typing I am shaking just thinking about not being close to my family. I have to live my life, I have to learn to deal with being sick by myself and depending on myself when I am sick. I know I can do it, I just haven’t had to up to this point. Do it girl……O LORD help me.
Ok, so I am back in the nest, temporarily, but it’s time to make a move. Being on your own is something that all adults need to do. Whether you are healthy or not, you need independence. Filing for disability is moving slow so I have plenty of time before my hearing and honestly living with my parents isn’t the best emotional and mental arrangement for me right now. I know my parents love me but I need to be alone sometime and have my own space. Also, in doing so would open up the possibility of me getting medicaid, which is extremely cheaper than what my parents pay now for my monthly premium insurance. To me it’s a no brainer, but I have to weigh all of my options and decide what is best for me. My mom has her opinion of what I should do with my money and I do respect that. Honestly, I normally do what she says because it’s easier and I am in her house. But Uhhhhhhhh, I am 38 years old and not 5 which is how I’m treated alot of the time. I must admit I do appreciate knowing that they are here to care for me when I need it but I want them to let me go when I’m well also. Erika has to be an adult and learn how to live with a chronic illness alone and take care of herself. FINALLY. Thanks Sissy. LYSM.