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.

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. 

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.