Saturday, October 22, 2011

Present, Past and Future

I am proud to say that my daughter just had her 6 week Progress Report and she had ALL A's and B's!!! I am so so proud of her hard work. The first few weeks of transitioning into middle school can be really hard, but she has adjusted really well and I have too, lol! Took me a little bit to accept that my little girl is in middle school. She's playing trumpet this year and has been doing well at that except for a really bad fall outside last week on her face. Had to take her into the ER and get her checked out. Her mouth is still sore so she's taken some time off until we can get her into the Dentist on Nov.9th and make sure her front teeth are all ok.

Next goal is to get her signed up for the babysitter course so she can start babysitting. She did earn a good amount of money taking care of our neighbors house and plants while she was gone. My daughter seems eager to earn money and is very motivated as I was at that age. I just hope she never experiences the things I did from age 14 on and miss out on her teen years as I did. I had a family trauma that made me grow up too quick at age 14, get a job and take care of my mom by myself while my Dad was working and going to school so he was never home. I learned how to cook, grocery shop, pay bills, and take my mom to all her Dr. appointments. I was given a car on my 16th Birthday which wasn't really a present but a way for me to take on more responsibility.

I will NEVER allow this to happen to my daughter. It scares me with my Fibromyalgia, my bladder disease and now a new health concern which could be a tumor around my adrenal gland, Pheochromocytoma is the name of the illness. Look it up....the symptoms are exactly like I've been having. The Mayo Clinic online has good information about it. Anyway, my whole point is that no matter how sick I am or get I will never put my daughter in the position I was in. It's too much to do to a child. I should have had other family members helping out or sent to Southern Oregon where my Aunt lived. Not that I would want to be away, but I missed so much in those years. The most important years when a child needs a mom or a parent. My Dad was too busy and dealing with it in his own way that he was not emotionally there for me.

I would not send my daughter away if I got terribly ill, but I would do my very best to rest while she was in school and not expect her to take care of my problems. I would be there every day for her when she came home from school and hear about her day and do as much as I can do for her. Maybe I'm jumping the gun, but it's a fear I've been having for awhile. Because I missed out on those years of my life I skipped some major emotional steps during those times and realizing now how it has impacted my life, my decisions, choices I've made in my past and most of all, relationships that I chose to be in. I could use a lot more counseling but the counseling I did get for several years made me realize the big snowball effect one thing in my life that started when I was 14 and continued until now and how it has impacted a lot in my life. At least at 40 I can put this all together and try to make changes in my future.

I had a lot of resentment towards my mom for years and it's taken me a long time to get over that. I didn't understand at that age why she couldn't be there for me. She couldn't help it and it was not her fault. She was in a horrific auto accident and had a closed head injury that effected the part of her brain with reasoning, memory, decision making and the worst which was her emotions. I could not handle having a mom who was there for me 100% to a mom who yelled at me every day and for things that she would forget. It was too much on a child or anyone that does not understand the brain. My Dad made me go to counseling but I didn't know how to talk about what I was feeling inside. All I knew is that I lost my mom. She was there physically but not mentally. I was embarrassed to tell any of my friends because my mom was like being around a child. She was unpredictable so inviting friends over was not an option. I also witnessed my mom try to take her own life using pills as she locked herself in the bathroom while I called 911 and stayed on the line until they got there and took her to the hospital. I was alone, by myself with no one to support me, hug me or tell me it was going to be ok.

I've moved on a lot since then. I got into the medical field because I wanted to help would ask why after everything I went through in my childhood. Well, helping others is something that has always come to me naturally. Yes, I took care of my mom and it was not easy, but I did it and took her to all her Dr. appointments. I could have moved in with a friend, ran away or something else, but I didn't. I stayed until I was old enough to move out and start my own life.

I married young, had my first child, divorced, worked 50 hours or more a week, was in a relationship and was blessed with my daughter from that relationship which is another story for another time. All I will say for now is that is was a VERY abusive relationship and I got out. That is when I decided I was ready to go back to school and get my CNA first then work up to a Nurse.

I went through my CNA training which was a special class aimed in Acute Care which was specifically for hospitals. Most CNA courses do not offer this so it was a big plus. I worked at Providence Hospital in Portland in the Respiratory Unit. Wow, was that an amazing and fast paced unit to the hospital plus because respiratory infections were a huge issue their air system did not flow all around as the rest of the hospital did because of the high risk of infection. It was the most WARMEST part of the hospital. You could go down the hall to the Cardiac Unit and it was like walking into a freezer. We once had a patient in quarantine so we had to wear the whole quarantine yellow gown, mask, surgical cap, etc......just telling you that it was the hottest I have ever been in my life plus the patients door is always closed and NO air flow is functioning in the rooms...on purpose that is.

Our class was 8 full hours every day, five days a week. Half of the course was in the classroom and the other half was working at the hospital......which I LOVED! I studied every night, quizzed myself and made studying one of my top priorities besides my kiddso.

I passed the course with A's! Worked my butt off hard to achieve that grade. The next thing was to practice for my Oregon State Board of Nursing Exam. This is something scheduled in advance, part written and the other part is hands on with actors who are acting as patients. All together the exam is about 3 hours. Most don't pass the first time and take up to 3 times to pass. If you fail the 3rd time you have to take the entire course over again before taking the exam again. That's a lot of pressure! I studied every moment I got. The morning of my exam I was nervous as hell...had to be there around 6am, got coffee which was a huge mistake considering I have IBS and I was having nerves. OY! Good thing my name was not called first. I went in about an hour later, took my written and the hands on exam. Afterwards, they say thank you and tell you that you will know your results via snail mail withing a couple weeks.

I started preparing resumes, letters of recommendation from my instructors since they offered. I was top of the class so I was able to get several. I then started applying for positions and starting the interview process. Usually you can go through all of that and once you get your results in the mail and OSBN card then they can officially hire you. Well, I found this perfect job and it was in the Pediatric Unit working as a CNA while I go to school for my Nursing degree. I had an interview and they really wanted to hire me so they called the Oregon State Board Of Nursing and asked if my results had been mailed out. Their answer was yes and that I had the highest percentage in my group. They told the gal that my card should arrive withing a day or two. They hired me on the spot, was going to start a week from that date. I was SO happy as I had worked so hard for this and it was one of the biggest accomplishments of my life and the one thing that lifted my spirits and all the times that were hard in my life, the loss of sleep due to studying, taking care of my kids and working crazy hours finally paid off.

How QUICKLY things can change. That night after getting my card in the mail, purchasing my new scrubs, stethoscope, Sphygmomanometer, my nursing shoes which were the most comfy shoes ever. After shopping and feeling on top of the world, I went to pick my daughter up at my moms house and go home for the night. When I got there my daughter begged to stay the night at my moms. She really had to talk me into it and I finally said yes. I gave night hugs and I love yous then headed in my car on my way home. On my way home I was hit at 45-50mph, rear ended by a Suburban, driver who was drunk and his blood alcohol was .16! Twice the limit! I was hit so hard that my car basically crumbled like an accordian, all windows shattered and both of my shoes flew off my feet. One in the dashboard and one in the passenger floorboard. I had head lacerations and was bleeding a lot. The ambulance came and I was taken to the ER, strapped down to a board until they could do tests and make sure I hadn't broke my neck or spine. Turned out I had lots of soft tissue damage, tons of bruising all over my body and cuts & glass all over that the nurses had to remove. I had a concussion so I was put on a 24 hour watch. My car was totaled, I ended up with 2 protruding discs C5-6 (neck area) and the Lumbar had 2 protruding discs as well, Mysofascial Pain Disorder. My body would never be the same again to do any type of nursing work and I had to call the job I was hired for and tell them what happened and turn it down.

Took 2 years in court to prove my case even though this was the fault of a drunk driver. Here's some advice for EVERYONE! DON'T DRINK AND DRIVE! You may think you are ok or have sobered up but you have not! Just sayin'! You can kill someone or change their life forever. Being in pain every day is not fun and it's led to many other health issues with me. I am sure My Fibromyalgia may have something to do with it.

Ok, so years went by and I wanted badly to work in the medical field. I found a job and was hired in a position, Medical Records for a facility that is like a re-hab. Basically, when one has been in the hospital for awhile and they are at a point where they hospital can't keep them but they are not well enough to go home they end up in a facility such as this. I did a lot of admissions and  the majority were head injuries of all kinds. This is where the point in my life turned around about my childhood and head injuries. These patients I worked with every day, interacted with them and their families and since I did all the admissions I was able to see their whole medical history before and after their accident. It was so much like my mom and how she is. I started asking my supervisor questions and reading up on all the different head injuries.....there are so many different head injuries that effect so many different parts of the brain and what it controls in your body. I got a better understanding that the way my mom was had not been her choice, her forgetfulness, emotions, etc was because of the part of the brain that wasn't firing correctly. I also learned one MAJOR thing.........THIS WAS NOT MY FAULT with her attempted suicide. I carried this with me for many many years.....up until a few years ago. A weight was lifted off my shoulders. All of this in my life has impacted so many choices I made, how I felt as a person. I had many people take advantage of me because there were parts pf myself that did not mature in some ways, I trusted too much which didn't help in relationships I got involved with.

I can now say that part of my life are on the right track and I know what I want for my daughter and what I don't want. I do know this....I will ALWAYS be there for her, to love her and if anything happens to me and my health I will do my best to lead her on the right track and not have her childhood taken away from her. I will encourage her to volunteer and teach her to not be judge others. She already has a big heart, she is compassionate and I have taught her about those with medical conditions and that they can't help the way they are and need to be treated just like she would want to be treated. My mom's accident taught me a lot in my life. Even though it took a lot of my childhood away it also taught me many positive things that I hope I can pass along to my children. Even my Fibromyalgia has made some of those in my family to understand those with disabilities more. Next time you see someone with a disability having a hard time reaching for something in the store, help them doors, ask if they need help putting their groceries in the car. Just the little things mean the big things to some people. Take time to talk to your kids, let them know you love them every day and will always be there. Life is too precious to take for granted.

Thursday, October 20, 2011

Just a small tid bit

So, been trying to blog but I'm finding it hard to type while being sick. I can't seem to type long without my eyes closing or seeing double vision. Got Bronchitis on the verge of pneumonia. Not fun. When I feel better I will start blogging regularly again.

Monday, October 10, 2011

Living with a Chronic Illness

I was diagnosed with Fibromyalgia a little over a year ago along with having 4 protruding discs ( two in my neck and two in my lower back ), Degenerative Disc Disease, IBS, Diverticulitis, Myofascial Pain Syndrome, Tinnitis, Chronic Migraines and my most recent diagnosis, Interstitial Cystitis which is a painful bladder disease. I think that's it, but I lose count of everything I have at times. There is no cure for the Fibro or the IC (Interstitial Cystitis). I am still learning about the Fibro and the much to learn still and just starting some treatments on the IC. Every day is frustrating living in constant pain. Most days I can hide it and there are days like this weekend when I just can't hide it because it's all too painful. On those days I get very little sleep because the pain keeps me awake or I can't get comfortable. One would think with the pain meds I take that it would deaden the pain. It only takes the edge off slightly which is better than nothing.

Most don't understand the two major illnesses that I have...Fibro and IC. Some have heard of it but then see those stupid commercials like the one for Cymbalta that shows a person before they take the drug and then after. Later in the commercial they are all happy and stating that they got their life back.....that is a bunch of BS and I really dislike those commercials so much. That's not the way it is at all. I was on Cymbalta, but I didn't notice any change so my Dr. put me on another drug which helps with the depression, but not with the pain.

There are days when it takes me hours to just get out of bed because I ache all over so much and the littlest thing like putting on pants and going down the stairs is the hardest and most exhausting thing to do. Once I get downstairs I have to take my meds and hope that somehow one of them will help in some way. After I wake up I go back up the stairs and proceed to take my shower. The shower feels good, but some days it's so exhausting to just wash my hair. By the time I get out of bed, get the kids off to school and then feel good enough to take a shower it can be 12-2pm. Just try to imagine use to only take me an hour to do all of that just a few years ago. The rest of the day is spent just trying to get what chores I can done before my husband comes home. I do my best to do this so he is not overwhelmed once he walks through the door after a long day at work.

I was denied once already for disability. The unfortunate thing, among many, about having Fibro and IC is that Disability does not always consider them a disability! Seriously! How can they not after just reading a short version of what my day is like. I am a member of a couple Fibro groups on Facebook and all of our stories are all very similar with the pain we live with every day. Some have been able to get disability and others have been fighting for years. If your application isn't worded according to their expectations then you are denied. It takes a lot of support from Dr's and documentation to get accepted the first time applying. I have to start all over again now that I have a newer more recent diagnosis. I'm working on how to word it correctly and trying to do my homework on that process so I don't get denied again. Thankfully I have a Urologist who offered to document meticulously and write a personal letter to Social Security stating that I am unable to work at a job due to my limitations.  If I do get denied again then I will have to get a Social Security lawyer and fight to have it changed.

In the meantime, we are hardly making it financially and this is due to my disabilities. I feel very responsible for my lack of employment and see what it's doing to our family. I was once able to work over 50 hours on some weeks and bring in a decent income. I was a single parent for close to 10 years and didn't struggle even half as much as we are now. Financial stress causes a lot of stress on my body which doesn't help with trying to manage the pain.

It's hard having an illness that most people don't understand well enough. With a lot of diseases you look sick, but with Fibro and IC it's different which makes it difficult for others to understand. I may look ok on the outside and appear well, but most days I am holding back the pain I am in. Before judging someone with a chronic illness take the time to research it and have an understanding of what it is. The more education of these type of illnesses may lead to more research and maybe someday a cure. Below I have provided a couple links that help explain the two illnesses that I have. Take a moment and check it out.

Sunday, October 9, 2011

I'm Back!

  Whoa! Just realized that it's been awhile since I last blogged. My husband has been on vacation for the last week which has kept me occupied. We just celebrated our 4th Wedding Anniversary on the 6th! That was an awesome day! We kept it simple and budget friendly and it was perfect! Went out to "Heidi's" which is our local family friendly restaurant.....or more like the place all the older people go to eat. That day we went for lunch while the kids were in school. It was nice, quiet and NO interruptions! I realized that day how much time my husband and I don't get often enough. Things have been so stressful in our lives these days that we really have not had much alone time to just relax, laugh and have a good conversation.

  Most of the week while my husband has been on vacation we just hung out and enjoyed each others company. The only thing that sucked on his vacation was me having to go to the hospital and our daughter having to go to Urgent Care. I was having some symptoms that were concerning and had to have checked out. Our daughter was riding her scooter and fell on her face, cut her lip up pretty good and hurt her hip. I decided it would be best to get her checked out because she was not wearing her helmet ( Grrrr ) and there's always a possibility that she could have bumped her head. I don't take head bumps lightly since I use to work in the medical field and the majority of patients being admitted had some type of head injury. So, for a mother's peace of mind I had her evaluated which she turned out to be fine.....well, mostly. Falling on cement on your face hurts like hell. I would know because I've done that years ago. That will have to be another story I will save for a different time though. I am just thankful our daughter is going to be ok. That is what matters the most! At this point we need a family ER discount! My son broke his thumb twice in just a few months so the ER probably knows us by now. Ha ha!

Well, that's about it for now I suppose. Blogging late at night sometimes causes my mind to go blank. I will leave it here for now and try to blog again soon. Hopefully no ER visits between now and then.

Take care!



Sunday, October 2, 2011

Find it, explore it and never quit or let anyone tell you to quit!

Inspiration: The process of being mentally stimulated to do or feel something, esp. to do something creative
The definition above clearly describes how I feel about Photography. I get a natural high just going out and finding objects to photograph. I started about a year ago when my husband purchased my first starter camera which is an Olympus E-420 DSLR. A nice camera to start with and someday hope to move up to a nicer camera with a bigger lens. I've never taken any photography classes, but self taught through online tutorials. I have found them really easy to use and understand. I also us Photoshop Elements which is fun to play around with. At first I did a lot of funky things using the program just to be creative. It was a lot of fun and easily got hooked in Photography

Photography I have found is the most relaxing thing I have ever done. I enjoy every aspect of it and want to learn so much more. I believe every photographer does amazing work because photography is art an art is to be original. Why would one want their photography look like every other photographer. My goal is to start my business with photography with families, events and also scenic pictures for stock photography. Right now I will take a picture of just about anything, including a pencil. I practice around my home taking pictures of just about anything I can then deleting them shortly after. That's if I don't save some that turned out well. The whole point of this blog I've written is to find something that inspires you and makes you happy. Having a hobby or something you love is a healthy outlet to anything that comes your way in life. If you don't have one then find one. It took me a very long time to find something that really makes me happy, I enjoy and can share with others so they can enjoy. Find it, explore it and never quit or let anyone tell you to quit! 

Saturday, October 1, 2011

The Spoon Theory- I would encourage those who know someone with a chronic illness to read this

The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

Wanting the way it was.

Once upon a time, I had so many friends, went out a lot, worked full time, was a single parent and was a soccer and ballet mom. I was busy ALL the time, but loved every minute of it. As the years went by my life took some changes. My son had more issues then I thought he would have, I noticed that every day became more of a struggle to get out of bed, but I kept on pushing myself because that's what I had to do. I finally found the man I fell in love with and we married. The first year was harder than I ever thought it would be. I found out things that hurt me and I never thought I would ever be able to get over them. I still struggle with them. Finances got worse, I lost my job, had two surgeries with long recoveries, diagnosed with Fibromyalgia and then later with Interstitial Cystitis. This was not my life anymore. This was not the person I dreamt to be. I dreamt of a successful woman who had a good job that payed well and eventually I would be able to go to school and study to be a nurse. Set my kids up for college and have a husband who was proud of the woman I became. This certainly is no way for a husband to be proud.

I struggle every day now and not knowing when I wake up if I will be in little pain or a lot of pain. I don't know how my son's behavior is going to be for the day and if I  can handle it. I can't think or focus like I use to. I don't go out much and no one asks me to go out. I see my friends on Facebook post pics of all the fun things they do and places they go with their friends or family. It hurts me greatly because I want to be the person in those pictures. My husband doesn't even look at me the same anymore and I don't feel his love toward me as it once was. He use to adore me and I don't feel that anymore. It hurts badly. Actually, it hurts in ways I can't even describe. Do I blame him for how he's been? He wasn't expecting to be with the "Energizer Bunny" go to basically a vegetable. If it weren't for my kids I'm not sure I would be here. I'm hurting more and more each passing day and I don't mean the physical hurt, but the heart that hurts. I've given my husband so many opportunities to leave so I don't burden him and let him have a normal life and be with someone else who can fulfill the things that I can't. He just doesn't look at me the same....that's the part that hurts the worst.

Yes, this sounds all sad and depressing, but it's a place I am in right now and I've asked many many times for help. I don't think anyone has an understanding of just how much I'm hurting because of the changes in my life in the last few years. It's hard to see his life go on w/o having a chronic health issue, get invited to things and I don't because those assume that I can't handle it. They make those decisions for me. I would like to be asked first and decline if I need to. It gives me some control over myself still. It's hard watching my husband do things that I can't. So, is it fair of me to keep him in a marriage like this where he is held back doing things because of me and also I get upset because I can't be a part of that. I don't know the answers. I just want to be loved for who I am, the person he married and fell in love with. I don't want to be an obligation or a burden. That's not fair to either one of us. He keeps saying he's happy, but I don't see it, I don't feel it. What does one do in a situation like this? What if I am in a wheelchair in 5 years.....then what? I don't want him to have that kind of a life. I don't want that kind of life either. I need hope. If I felt really confident in our marriage and felt like I was everything to him I believe it would help with my health condition. I believe if we are depressed and down then our bodies feel it and don't try to heal. I just want my husband to see me as they way I was and be in love with that woman he asked to marry him. Without any regrets. I want my friends to not forget about me when they do things and invite me. Yes, there may be a lot of times that I decline but there could be that ONE time that I feel great and want to go . Don't just assume I can't do anything. Unless you have stepped in my shoes you have no idea the physical and mental pain I live with every day.