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.