Breaking the cycle of loneliness

Trying to break the cycle of loneliness 

that I have yet to master. 

All I can say is DON'T GIVE UP!!!!

   Loneliness can be hard to cope with. Not just sometimes but all the time. I know I am not the only one. And my loneliness stems from a lot of reasons. For a long time, I have fooled myself into thinking that I could change my situation and make it easier on myself. What are you talking about? Fooled yourself? You can change your situation, right? Ok, come on let me finish before you jump to conclusions like I have given up or something. By my situation, I mean the situation that plagues my body and is NOT going to go away in this system of things. I have to realize in this world, in this system of things. The health that plagues me that adds to my loneliness is not going away. Ok, so I know I can't change the fact I am fighting MS or RA or any of my other health issues, too many to mention, that with no matter what new herb or remedy that is being forced down my throat to try. And I still try them giving them the benefit of the doubt. I have many bottles of everything given to me to try and I do try them. This thorn is just going to be there. 

   My illnesses plays a major part in my loneliness. I have fought so long trying to prove to my body I will fight it and push myself to the limit. But currently, I am at the point if I do push myself harder I just might die from pushing so hard. I am also dealing with a cancer scare. Yet to even know if I have cancer. That is pretty scary. All I can tell you is I feel sick every day. It hurts to eat. Yet I still eat. My body purges it, yet I am not skinny what gives? The pressure and pain from where my tumor is. A daily reminder that it need to come out. And it will. But I am going through the process and steps in the medical world. Next surgery it will be out. It will be nice when all that is gone. And maybe the one less pain. And prayers it is not cancer. Will make this thorn easier and thus, make it easier to deal with my loneliness.

   So why does illness play such a huge part? Because it confines you. No matter how much you try to avoid being confined. It just does. I am home bound the majority of the time. People assume because the outside of my body looks pretty besides the fluffiness and looking past the fact that I use mobility devices such as a cane, walker and occasionally my wheelchair. They assume I am ok and should do more or push more. Judging comes easy for some, even though we were not given that authority by Jehovah. The fact is, I have pushed for a very long time. I have fought for a very long time. And my body is getting very tired. But I still refuse to give up. I have a lot to fight for. And I still have age on my side if that means anything anymore. Because it seems like major illnesses don't age discriminate anymore.

   So this means I stay at home A LOT. Many times I can't make my meetings and am stuck at home on tie-in. I still receive my spiritual food, but I am invisible because I am at home. My children have to go without their mom some days. Their main support for spiritual support in our family home is me. They have to rely on other people and that should not be the case, but it is. Besides doctors appointments, and there are many between myself and the kids. I can't count the specialists on my fingers between us all. I am stuck at the house. The majority of my energy is spent homeschooling my children with the aid of my sons parapro. People call me crazy. But it is not about me, it is about what is best for them. Making sure my kids get spiritual food at home. My daughter is a huge help in assisting in this area as well. And trying to keep up on what housework I can and cooking meals. My daily living skills lack. Dressing, showering, and being presentable are a huge challenge for me. I tend to look like a wreck most days. And I know a lot of people can relate to this. I am not alone. I am not the only one fighting loneliness.

   Because I am sick very often. I don't know what being well feels like anymore. I automatically don't get invites to functions. Even if I can't make it. It is nice to have the invite. And maybe that day I do feel good to go. Or someone is willing to HELP me go. You are not going to know unless you ask me. And because of my illnesses, my children are automatically put in that category. It is sad. Ben misses out on a lot. Lana does get invited out more. And a lot I know is most don't want to deal with the stress that can come along with him. His medicine bag can be intimidating. And even my mom gets stressed out when he gets sick on her watch. My poor buddy gets stuck in this cycle as well of being left out. And it makes me sad. Because if I can't go that means majority rules he can't either.

   Things that I have thought of to help break the cycle of loneliness.

1) Reaching out. While I have reached out before. I am doing it again. Sometimes I hate reaching out because I get put in that category of being a complainer and a burden. At least, that is how I am made to feel. Or think I am made to feel.

2) Inviting people over to see me. This can be hard. Housekeeping is very hard for me. I get embarrassed because I know my house is not perfect. It may be presentable. But I see all the flaws. I see that it needs deep cleaned. But I can't do it.

3) Moving past being embarrassed about my house and lack of perfection and inviting people over no matter what.

4) Maybe investing in a housekeeper that is willing to do some deep cleaning for me. An expense I would hate to have. And that I can't really afford. But one that might be necessary.

5) Asking for help with Ben. Finding someone willing to learn his needs and not being intimidated by his medicine bag. If Lana can do it, any adult surely can right?

6) Finding someone willing to take Ben under his wing so he does not feel so lonely.

7) Taking suggestions from others that completely know my situation and limitations. And taking those into consideration when offering suggestions.


   So I think really analyzing one's situation and finding ways that you can help yourself can help break this cycle. I might always be lonely at some level. Even after making corrections. But the point is not to give up and ask for help. Reach out to others in your time of need. If you don't they may not know how much you desperately need it.

   And once you have reached out. Not finding reasons to not accept the help. In recent days. When people have asked what can I do to help you. Instead of saying thank you for the offer, I will let you know if I need help. I am replying back with what I need help with. Now that has been a hard task. It has been humbling to say the least.

   So if you are lonely. Don't give up. You may not be able to change some aspects of your life and situation. But you can find solutions to make it easier in life. And accept the help when it is offered and given.

Dear Husband...

   So I read a Facebook post this evening. It was talking about what we would say to our husbands to help them understand what we really do every day or go through every day. I am sure as a wife we have all heard "I wish I had your job", "Why are you tired?", "What did you do today?". I know I have. And if you say you haven't. I am going to be honest. I don't really believe you. 

   As I read through the wife's letter to her husband. I saw myself past and some present in her letter. However, my life has drastically changed since being that new mom with little toddlers running around. And I am dealing with a whole other ball game now. I could go into how challenging it was raising a severely Autistic son at that point in his life he was severe and diagnosed as so. And how hard of work that was. Now I have a verbal Autistic son making huge improvements. And while it is easier in some ways, it is harder in other ways. 

   So as I sat there reading her letter and having empathy for the mother with toddlers. And thinking back about all those challenges I had with a special needs toddler, and raising a typical child as well. I thought about all the current challenges now. Not only the ones as being a mom but being disabled mom and wife. 

   This Facebook post made me sigh. Because all too often I hear those famous words. "I wish I had your job", "Why are you tired?", "What did you do today?". And as I sigh and wish I could just say everything all at once trying to express my day. I continue to hear those phrases. And give an angry face. 

  So I thought why not do my own Dear Husband letter with a little twist? Expressing what it's like and what my day is like being a mom with a special needs child and raising a typical child, homeschooling, and having my own disabilities. Well, so here it goes. I think you will find this much different than most dear husband blogs. 

Dear Husband, 

   I know it is hard for you to understand that I work hard all day. Because you may not notice the accomplishments that I did that day. It may not manifest as that perfect clean house that most people really want. A home that looks like it is not touched and or lived in. One of perfection and spotless right out of that magazine. And it's not, it is very well lived in. Your dedication to working full time outside the house to make sure our bills are paid does not go unnoticed or unappreciated by me. And I am thankful that you are willing to work and make that happen. But my job is not easy and it is hard you see. It may be hard to believe. But it drains me as my work as a mother does not stop at 5 PM, unlike a typical workday. Sometimes those comments can hurt me deeply. To say I do nothing, or my job is not hard. When I appreciate your job as a husband that you do so well. Please hear me out and see what I do so well.

   To survive my day, it takes a 100% of what I have. And sad to say at the early age of 37 my body has broken down. Having multiple disabilities has sure challenged me and that 100% is hard to give you see. Have you ever heard of the spoon theory? It is a really great blog written by a woman who is chronically ill.  She explains it so well in a lot of detail. Each day and each activity it takes a spoon from me. Think of it as energy, one spoon is one activity. If I start out with 10 spoons, and each activity takes a spoon. My energy drains fast and my day becomes distressed. So when I say I am tired or that my day was long. You may think it was nothing, but I am not the same woman. I don't have a 100 spoons that I used to have so long ago. I may only have 10 spoons for the day. And I am giving my family all my spoons I have and not angerly as there is nothing to save and use for me. But I signed up for this job and I love it and I do it so well. So I continue to push and be me. 

   Each day I wake up and not as early as you do. I do know this fact and I do not deny that it's true. And I don't think I can do as early as you do but here is what in fact, the things that I do. I wake up an hour earlier then I know I need to wake up. Laying in bed keeping my eyes closed, knowing what I need to do. See I have nobody to help me roll over and make this easy for me. As I cry out in pain from my hips stiff from RA. Let's not forget about my MS having it say, don't you forget about me as I cause you such pain. My hips they don't want to move because they laid at rest and unused for too long. I know I have to move if I don't want the pain to take over for the day. So alone without help I rock back and forth. Warming up my joints and sometimes they just don't want to give. With a one, two, three and tears rolling down my face. I roll into my position of choice to move those hips. Back and forth back and forth till I can stand up straight. Phew, that took an hour I think it's too late for a shower. 

   The kids are up I can hear their chatter. They are good with their routine so it does not matter. I am thankful that all that training I did with them in early years, it has paid off 10 fold because they were molded with love. They are great little helpers and amazing children. I am very blessed to call them my children. They set off to do their chores me guiding them every step of the way. And sometimes they are like, mommy we did that anyway. Smiling as I watch them glow making sure that our house is presentable. I do as much as I can because I still hurt from getting up. The kids are so proud of themselves for their accomplished tasks. We now can move forward and start the day at last. 

   Breakfast was eaten, and chores are done. Before we start the rest of our day we give praises to Jehovah. We read from the bible Lana loves this part. She is reading out loud to her brother Ben loves that part. Daily text is read and pondered on. Our bellies are full and our minds are fed. There are some mornings when we go out in service. If we do I am done for the day. But in my heart and mind it was all worth it.

   I look at my calendar to see what is planned. Is there a field trip?  What therapy is today? Do we have a doctors appointment? Because it seems like we do something every day. Oh yes, we do. I guess I have to take that shower. Forget about looking my best because I am already tired and under duress. I slip on some sweat pants and a shirt that has seen better days. I forgot I can't drive anymore but my mom saves the day. Forever realizing that luxury is no longer there to just pick up and go anywhere. 

   Do I have my notes for the doctor today? I need to remember to tell him about my new symptoms I am presenting. Unless it's for Ben. Do I have all his records? I need to be ready to show his progress and achievements. Have we missed anything? Do I need to be doing more? How are is progress notes for his therapies? How far will he come? Will he develop and improve more? I worry so much and wonder if he will ever read or write fully. It hurts him so much to know he is so different. No matter how much I try to make it normal for him. He knows it's not and it does hurt him so. Because other kids don't have therapies. His week is busy for a child of just 10 years old. Let's not forget about Lana while healthy she seems, she does pose some problems that can not be seen. But I am always prepared. I am mentally drained and feel so helpless. There is one thing I hate and that is seeing my babies in despair. It takes a lot to take care of our medical needs. Not forgetting I take care of yours as well. If it is not the kids or you I need to take care of, it is indeed me that is being seen. Being an Advocate is hard you see. I Advocate for my whole family and people hear my pleas. But it is my job and I will continue to make sure that we are heard. Because I am mommy and your wife and love you so.

   Coming home, it is time for school. Everyone thought I was crazy to homeschool. But I see the progress that I was told would never be made. So I keep on doing what needs to be done. I am thankful for Bens Para. She is amazing with him. She is a God send and a true gem in our home. Lana starts her work she is so independent. She amazes me with her straight A's. I knew this was the right decision. This is frankly the easy part for me. Because we have this routine down and it goes pretty smoothly. Teaching comes easy for me and they make me so proud. However, this takes a lot of planning. And that takes time. Hours of research what curriculum will I find? That didn't work time to find something new. Changing things to meet their needs is what I do. I am legally blind. And my eyes now hurt. That was a lot of research, but I think it will work. 

   I am sad I can't work and help you with money. So I find ways to help out and give us some cushion. A friend taught me how to do reviews for companies. I am able to get stuff. Stuff we can use and some that I can sell for money. I finished a video review today. I only made ten dollars. But I was able to buy some necessities Lana needed so desperately. Blogs and reviews have become my job. I don't make a lot. But it was all I could think of.   

  Taking time to plan our meals and grocery lists. Shopping is another ordeal that sends me into a fit. Thinking of the pain from that long day. I only dread it but do it anyway. Can't forget about that budget and making sure the bills are paid. I make sure it's done. Because I don't want you to stress. I deal with stress already what is one more thing for me. Plus I feel like I am using that degree.

   You are almost home. I better finish up. I know how you like to spend some time with me. That blog is almost done, but I set it aside. Because I know you need that cuddle time. As we snuggle in each other's arms. I can breathe for a minute. I suddenly forget about the pain I been feeling all day. Those pain pills just don't work like they should. But you make me forget even if it is for just a minute.  

   I open my eyes and realize what day it is. I have little time and I need to make dinner. I need to get dressed because we have meeting. I need my spiritual food. Jehovah please give me the strength. Some days I win and I am able to go. Other days I lost the battle but not for too long. Dinner is made. I lost the joy I used to have in cooking. There are dishes again. And nobody wants to do them. I start to shut down. Because I no longer have spoons. I used them up so quickly I only had 10. My dear husband I hope you can see. The life of a mother, wife, disabled woman is not so easy. You may think it is. But here is the thing. You could never walk in my shoes because you are not me. 

   I go to lay down. This should be relaxing. But in fact it is not. Because my body realizes it hurts. As I toss and turn during the night. Never fully a sleep. Turning over to see you in a peaceful slumber. I realize the time. And know soon in just a few hours this same routine will resume. Tears build up and I cry alone. Praying I forget the pain just long enough to get some peace. I fall a sleep and soon wake to the sound of beeping of an alarm it is time for you to get up. Keeping my eyes closed. So you don't think you woke me. But it did and now I have to try to forget the pain again. 

   Falling asleep once again. Screaming in my head beep beep beep. Opening my eyes, it was not a dream. It is time to start the day again this day is on repeat. Rolling back and forth.... 

   

   

   

Dealing With Debilitating Chronic Pain

   There are so many topics I want to write about. So many different elements that come along with Multiple Sclerosis, Rheumatoid Arthritis, Fibromyalgia (FM), POTS, Stargardt disease, and all the other stuff that these BIG issues cause. Between the Blood Pressure issues POTS causes and the Central Apnea that MS causes, etc. Like I said there are so many elements that are brought on with these medical conditions. Each one bringing on its own mess of chaos. Like my doctors tell me I am a difficult and complicated case. I just don't pose with one issue. My whole body is under attack. And so far I am not winning at all. Let's not forget that I have a mass growing on my Ovary that is very painful and soon will be removed. And the idea of playing with Cancer is not fun to think about.

   The one thing that is in common is pain when it comes to these issues. MS causes pain, RA causes pain. My eye issues cause pain, POTS causes its own kind of pain. And that mass causes me pain. And they all like to play with me at once it seems like. None giving me any type of break at all.

   Dealing with nerve pain from the MS was bad enough and the deterioration of my muscles and weakness that comes with pain. Try walking on muscles that that are atrophying from a condition such as MS. And it all depends on the type of MS you have and how advanced. I am not one of those MSers that can run a marathon. Let's put it that way. Using a cane to walk, walker and then my wheelchair when I need it. I use the wheelchair a lot to cook out of. I am fond of it. It helps me.

   The RA has been in full swing flare as well pain wise. I am in beginning stages of it being crippling. Slowly twisting my fingers sideways and causing the fun nodules that come with it. I guess I am blessed that it is not further along than what it is. But the problem is I have other issues that cause it to feel worse. It is also in my hips. I frankly am not sure what is worse. Because it literally can take me hours to even get out of bed. So I better wake up in plenty of time to try to even start moving and somehow get out of bed. There are days where I lay alone in my room crying and trying to turn over. See it does not matter how I fall asleep. On my back, and on my sides. Forget stomach sleeping. That is bad for you anyways. But no matter how I lay down. My hips freeze up.

   The trick I have learned is to try to roll out of the bed. And get on my knees. My bed is too low to just let my legs dangle off into a position that has my stomach and head laying on the bed. And I start rocking my hips back and forth back and forth. Helping them to loosen up. But the problem is managing to get into this position. And having NOBODY to help me get there. Mario leaves at 4 AM in the morning. Kids are asleep. Can't ask my mom to help me. I am stuck trying to do this myself. What happens when I can't do it anymore and push past the pain that causes me to almost pass out? I don't even want to think about it.

   My hands are the second runner up when it comes to RA. It hurts to grip, it hurts to write, typing is even hard. But still easier than gripping and writing. Because like I said. While they are starting to deform. I am in very early stages. Unless I show you where they are not straight. You are not going to notice till it is further along. Those who know me can tell. But at least I still have some function in them. And I am going to take advantage of that because before long it will be gone. And I am only 37. So that makes me really sad.

  Let's not forget my AC joints. Things like brushing my hair. Holding a book for too long. Or in my case iPad to read for too long. Putting on makeup trying to hold my arm up. Washing my hair. Trying to put a bra on. Putting a shirt over my head. All things we should be able to do normally are a challenge for me. I have gone to therapy. But no longer can afford to go 3x a week.

   Oh, the back. Let's not forget the back. I have degenerative Disc Disease. For my age, it is pretty advanced. And I have this blood tumor growing in the middle of a disc that causes pain and discomfort. But it is very dangerous to operate on because of it is made of veins and blood. So we leave it.

   The Knees and feet are inflicted with RA as well. However for me those seem to be the lesser of the evils compared to my other joints.

   I also suffer from Fibromyalgia. And it seems like most people do. So you know that this brings on its own pain as well. Just those points on your body that when are touched you go through the roof. You know what I am talking about. And honestly I forget I have FM sometimes because I got so many other crazy things that I have been DX with. Somtimes the other pains just out weight this one for me personally in what I go through. I was on Lyrica for a while for it. But man that drug is expenseive.

   I have been having eye pain. Frankly I am not sure if it Optic Neuritis from the MS or is it the aftermath of losing my eyes from the Stargardt's disease. I also get nasty migraines from being legally blind and fighting to focus with half of one eye left. So that could be it as well. But the pain is not fun.

   POTS causes lots of fatigue which in itself is crazy. Not to mention the MS and RA cause the fatigue too. But I get this intense pressure in my head and the swelling in my legs and feet cause pain and pressure.

   And last but not least that mass growing on my Ovary is actually very painful. I get a lot of pain in my abdomen. The groin area. It feels like this intense sharp hot pain. It is really strange. I will be glad when it is gone. One less thing to worry about pain wise.


   So for me with these chronic illnesses one thing that stands in common is pain. And today it has gotten to me. All I want to do is cry and lay in bed. But I can't. I have kids. And they need me. It is almost 1:30 right now. But I don't think I can endure the day much longer. It will be a simple dinner and early to bed kind of day. This gloomy weather is not making it any easier.

  Next time I want to talk about  Pseudobulbar affect (PBA) A disorder that is common in MS and how it affects me. 

12 years ago Today...

   While I do not celebrate birthdays with parties and gifts for religious reasons. We respect the day of our birth and our children. As well as individuals respecting Jehovah for giving us this gracious gift of life and respecting our parents going through all the pains of giving labor and raising us to become the amazing adults we are today. 

   Today my daughter turned 12 years old. Each day not just each year I am so very thankful that Jehovah has allowed me to be her parent. Putting her life in my hands to raise and become an amazing adult. And I thank him for that. I thank him for this gift each and every day. Not a minute passes that I don't think about how close I came to losing her. How close she came to losing me 12 years ago today.

   It was a very scary day. I was very sick. She was very sick. We both had Ecoli because my water broke a month to early and nobody listened to me. I spiked a fever of over 105 and my body was shutting down and swelling up from eclampsia. I gained over 60 pounds of water overnight. But not only was my body slowly shutting down so was hers. After an Emergency C-section, lots of blood loss and a long stay in the hospital we both got to go home.

   It was a very big day for us both when she got to come home. I left the hospital a week earlier before she did. Granted it turned out I should have stayed. Infection set in. A bad one. I had to be reopened and packed from the inside and heal with an opened incision to keep the infection from building back up.

   But she got to come home when this happened. I was NOT about to be put back in the hospital at all. So I healed at home. With the help with a nurse that would come daily to take my vitals and care for my incision. Soon though the Insurance would no longer pay for it. So they taught my mom how to care for me.

   It took a while, but we both recovered from this experience. And now 12 years later. Minus the fact we do have to watch her Organs, and she risks getting E-coli easier than the average person. She is really healthy.

   This day also marks another tragic situation in our family as well. While I was laying in recovery to the unknown if I was going to make it through the blood loss, high fever, a severe case of E-coli, and Eclampsia. My cousin was having surgery for a Craniopharyngioma tumor that would forever change his life and eventually took his life in March of 2011.

   Forever these life-threatening events affect our life. It was the start to my battle with MS and other medical issues. But the beauty that came from such pain and sacrifice is a beautiful amazing daughter.

   She has had to grow up fast in a world of disabilities and special needs. She has taken on much responsibility. None that could have been prevented. She has taken it on with such grace, respect, pride, and honor.

   She is funny and amazing. She makes me laugh on a daily basis. She reminds me of me and a better me. Her beauty is like no other. Exotic, natural and raw.

I am forever thankful for this young lady being in my life. And I am honored to be her mother. Thank You again Jehovah for giving me this gift to take care of. I hope I am doing everything right in your eyes to raise such an amazing child.

Isolated and Confined

   I started this blog so that I could diary my journey in life. I have not done a great job of that. I have not posted since July on both my blogs that I run. For various reasons in my life. I could make a ton of legitimate excuses why. But I decided to start up again. And for a few reasons. Maybe I can help someone going through similar experiences. And just maybe I can help myself feel less isolated and confined.

   Having multiple disabilities can make you feel very isolated and confined. It is kind of a fact of life really when you are dealing with something that leaves you bedridden a lot of the time. And if you are not in bed you are just isolated to your home all day. It literally becomes your prison.

   I suffer from multiple disabilities. And if you are my friend reading this and close to me. You most likely already know my inflictions I suffer from. If not and you are here to see what this diary is about I can break it down a bit. Later on, I will discuss what each one does to me. I suffer from Primary Progressive Multiple Sclerosis, Rheumatoid Arthritis, POTS, Stargardt disease. The past year I have also known about a tumor on around my Ovary that keeps growing. It has septa which means it has become solid. And this can mean a lot of things. As well as my Uterus and cervix has become very thick. I know a lot of TMI. Needless to say, the tumor will be removed soon. I had a failed biopsy outpatient (due to my Uterus and cervix being so thick) so they will be doing it during the surgery and they will also do an Endometrial Ablation. If all tests come back negative for cancer I get to keep all my lady parts. If not they will go back in to do a full hysterectomy. I am thinking positive on no cancer.

   All these diseases leave me feeling well worthless sometimes. Granted I know I am not. But it can get you down and depressed. It has isolated me from the world because I don't venture out much. On my good days, I am lucky to get out of the house to go to a grocery store or the doctor's office. And I am constantly fighting with my body to let me go to meetings and out in field service. Social Media has become my outlet for talking with friends and family. I would love visitors. But people are busy so those are far and few in between. But I get excited when I have visitors.

   I also homeschool my children. My son who has some medical issues and special needs. It became impossible for him to attend Public School. And I had various other reasons for homeschooling as well. But his health was a huge reason why we took him out of the public school setting. Between my son getting chronically sick being around other children all the time. He caught everything those kids brought to school. So he missed a lot of school days and spent lots of time in the doctor's office, ER, and hospital. Since he has been out of Public School those visits for being ill are a lot less. Also, he still has therapy several times a week 4 times a week to be exact. Play Therapy, Physical Therapy, Occupational Therapy, and Speech Therapy. He used to get Music Therapy till his therapist quit. Now he is back on the waiting list for Music Therapy. So it was just easier to Homeschool my son. Well both my children. Granted I do have help. He has a Paraprofessional here at the house.

   So I stay busy between doctors, therapies, and homeschooling. But it still confines me. All his therapies besides Play Therapy is done at the house. And of course, we do have to leave the house for doctors appointments. And those are plenty. I am thankful to his Para because she assists me so we can get the kids out of the house and to events around town. She is a godsend for sure.

   So you would think with all I have going on how can I feel so isolated and confined? Well, I just do. None of what you read about is fun. It is a hard life. And it equally has been hard on my children. My daughter who understands everything all too well feels it more than my son does. She sees people going out and having fun. We automatically don't get invited to homes or events. I think people just automatically assume I will not feel well enough to go. But the fact of the matter is. I have good days. I might be having a good day. You will not know if you don't ask! And no matter what my children need connections with others around us. Yet I fear that some just don't want to take on the added responsibility of my children. Don't get me wrong. There are a few that do. But they happen to have a lot of health issues on their plate as well. But I do find those with health issues are more willing to step up. Because they understand they get it.

   So I decided instead of sitting and doing nothing to let people know how I feel. I am going to start writing again. Because soon that will even be hard. RA is starting to twist my fingers. It is the beginning stages. But it hurts and it is painful. And I know soon enough the luxury of typing without outright debilitating pain will be here soon enough. This month also marks a year since my left eye was removed. I think that has gotten to me more than I realized as well. And realizing that I am slowly daily losing that other eye to blindness scares me so much. Each day I wake up to a little more gone. And each day I wake up wondering if today is the day I open my eyes to darkness.

   This month is going to bring pain a lot of pain in many ways. Anniversaries to a major loss and most likely my surgery will be this month. I can get through this. But I have come to realize. I can't do this so much alone anymore. I need to start talking and people need to start listening.

If you need someone I am here

Words that we want to hear
Words I know I would want hear

   I am serious when I attached that picture. One of the worst things that come along with MS and other Auto Immune diseases is feeling alone. Feeling like I have nobody to talk to. To relate with. Feeling like nobody knows my pain. Or when I do express my feelings they just start comparing my pain to their pain. Thus in turn making my cry for help turn into talking about their selves instead. 

A Place to express my self

To survive in this world today,
one must express themselves.
Find out who you are
and just be you!

   I have always loved writing. Despite my dyslexia and in recent years my visual impairment. I never wanted it to slow me down. In the last several years, I have found myself very lonely and isolated. Mostly due to my medical conditions. Having multiple disabilities and a son with a disability. Even though you are around a lot of people. Well, when I mean a lot of people. I mean therapist, doctor's, and providers. You still feel locked up from the world with no way to express yourself.