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.