*Warning - This post is more of a major vent. It's not filled with funny, cute pics. It's the reality of living with fibromyalgia and other chronic conditions. It's
my reality.
As a teenager, I knew something was wrong with me. I complained all the time to my parents that I was tired. I complained I didn't have energy. I complained that my knees and my body hurt. Their solution? They'd tell me I was too young not to have any energy. I was too young to be tired all the time. They told me if my muscles and joints hurt, to quit the cheerleading squad. It'd always make me mad and it would hurt my feelings, because I truly did feel the way I told them.
As a young adult, I still felt the same way, but it was tolerable. I worked. I took care of my 4 kids. I went to college. I did the things I needed to do, no matter how I felt. I thought about going to a doctor because of how I felt, but then I'd talk myself out of it, remembering the words my mother would say to me when I complained to her. I felt going to a doctor wouldn't solve anything, that they too would just think I was faking.
Quite a few years ago, I felt too lousy to keep working. My husband told me it was ok, that we could make it off his salary and I could stay home with the kids. This is what I did. I still took care of them, along with taking care of the house. I still felt bad. I still never had any energy. My body still hurt.
A year ago, a year ago this month as a matter of fact, all of my symptoms started getting worse. My oldest son had left for basic training in March. He's in the Army Reserves, and is a combat engineer. He was stationed at Fort Leonard Wood, MO for his basic training. In May of last year, I was thrown for a real loop. Something had come to my attention, that's very personal, and was very upsetting to my husband and myself both. I DO blame this circumstance for bringing on my symptoms full force. At that time though, I wasn't aware what was wrong with me. I just thought it was stress. I wasn't able to clean up my house as well. I wasn't able to keep things as neat and tidy as they had been.
My oldest daughter graduated with her undergrad degree June 5th of last year, from DU. She was the 1st person from either side of the family to actually graduate from a 4 year program. We were all so happy and proud of her. My husband, his mom (this was my daughters step-dad and step-grandma), our youngest daughter and myself all planned a trip to Denver, for her graduation ceremony. We rented a car and drove from NW Ohio to Denver, CO. I can't tell you how hard this trip was for me. By the time we got to Denver, I was physically sick. I could barely move. I was in so much pain. On the way home from Denver, I hurt so bad that it was all I could do to keep from crying. Exhaustion wasn't even close to describing how worn out I was. Again, I thought it was just from the stress of the trip. I still didn't see a doctor.
Finally, late that summer I started going to a new family physician that moved to our area. While at an appointment for something else (my copd..as the last fam. physician had said it was, but I've had asthma since I was 5 so whichever one) I mentioned to her how bad my body hurt and that I didn't have any energy. She asked me how long this had been going on. I laughed and told her years, but that it just had gotten a lot worse, since our trip in June. She gave me a shot that she said would help inflammation and ordered some blood work.
About a week later I received a phone call asking me if I had a rheumatologist of choice that I'd like them to refer me to. I told the nurse no, and asked why I was being refered to one. She went over my blood test results and told me that my WBC and absolute lymps was high, my SED Rate was high, my CRP was high, and that I had a positive ANA in a speckled pattern. She said the doctor was concerned that I had Lupus.
It took until October for me to get into a rheumatologist. That was a long 2 months of sitting and worrying, and trying to become Dr. Google on the internet. The rheumy I went to had the personality of a wet fish. He made me feel uncomfortable and he made me feel stupid. He diagnosed me with Fibromyalgia. He re-ran all my blood work. WBC, absolute lymps, SED and CRP was still high, but this time my ANA was negative. Both times I'd had blood drawn I had a negative RF. I told him about the knee and hip pain, and he took an xray of my hip and said I have bone spurs on it. He didn't do anything about my knees, except to tell me to buy a new pair of tennis shoes, that he didn't like the looks of mine and they looked pretty old.
In December I went back to the jerk. He made me feel stupid that time too. I showed him a sore I had on my stomach and told him I get them all the time. They fill so big with puss, that they actually bust open all on their own, and puss and blood oozes out. They're disgusting. He barely looked at it and then asked me if I wash my body with anti-bacterial soap. When I told him no, he said "well try that". He was just a hurried, cold, jerk about everything and made me a nervous wreck even thinking about going to an appointment with him. He obviously wasn't the right doctor for me.
I did some research, and decided to call The Cleveland Clinic and ask for a 2nd opinion on the fibromyalgia diagnosis. I didn't like nor trust the 1st doctor, or his opinions. I was able to get an appointment with them, for February 1st. I took it. This doctor, still doesn't have a wonderful personality but at least she didn't make me feel stupid. She
took her time with me, and she gave me a super complete exam like I had not received from the 1st rheumy. She agreed with the fibro diagnosis. She also re-ran blood work and this time my WBC, and absolute lymps was high, and so was my CRP but my SED rate was normal. She ran about every blood test under the sun, but looking over my online test results she did not run an ANA again for some reason. She also diagnosed my with arthritis in both knees, AC Joint Arthritis in both shoulders, and arthritis in my neck and my back. I already knew about the arthritis in my neck and back, due to a CT scan I'd had about a year prior. That CT is also how I found out about the bone spurs on my spine, and the Tarlov Cysts running all up and down my spine. She knew I was there for a 2nd opinion but she just assumed she was taking over my rheumatology care. That was fine with me, as I was going to ask her to take me on anyway. She said I'd be seen in her Fibromyalgia Clinic. Why they call it that I don't know, because I just check in at the rheumatology desk and go in a room in that department for it anyway lol.
So, this post is already long and I've went through this history with you all, just to build up to huge moan and complaint. My body is now so wrecked. In so much pain. So tired. That I can't work. I can't even do household chores without crying. Even with an Ultram pain pill in my I still cry most of the time, and don't even get to finish the cleaning or cooking task I'd started. My memory is horrible. I have bad insomnia. I honestly don't have a day where I'm not in pain. I'm not talking about a little bit of pain either. I'm talking about excruiating, debilitating, make you cry, pain.
The day before my husband walked out on me, he'd come home and told me that he has far too much stress on him and we had to find a way to decrease his stress. I asked him what he was so stressed out about. The very first thing that popped out of his mouth was "your illness". Then he went on to add "bills" and finally finished up with "and Matt". That is our youngest son, who in all honesty had been bringing stress to the table. Wow, I felt like total crap that the very first thing he said was "your illness". I apologized to him. I told him we'd find a way to help with his stress level. I truly believed everything was going to be ok. I had no idea at all that he was going to go check out hunting land the next morning to not return, or call, or anything for 2 more days after that. Then, it was him sending a text to our 16yr old daughter around 11am on Easter morning saying "I'm leaving your mom, but I'm not leaving you". Who does that? Who in their right mind sends a text to a 16yr old child telling them they're leaving her mom, before even discussing it with the spouse??! He showed up around 11pm that night to pick up his clothes and walk out the door.
When he left he told me "I know you're too sick to work. Don't worry, I'll still pay all the bills and make sure you get your medicine and to your doctor appointments.". The next afternoon he came over and we made up an agreement, which we then took and had our signatures notorized on the agreement. It was enough money a week to pay the bills, + a tiny bit for incidentals and $75 a week for food. Unfortunately, he hasn't made good on that agreement once yet. 2 weeks ago I was upset, because as soon as his check hit the bank, he withdrew $700 and left me with $61. Now, this man lives with his sister rent free. He doesn't have any bills at all. He doesn't even have a car payment.
I have custody of our daughter and I have the house, along with all the expenses of having a daughter and a house. Yet he left
me with $61 while keeping $700 for himself. So last week, I figured out if I wanted to pay my bills that were due I'd better beat him to an ATM that night. I did, and even though he'd shorted me almost $1000 from what he agreed to pay, since he'd left me April 8th, I only took $37 more then the agreement had been for. My lawyer and my dad had both told me to take EVERYTHING if I got to it first. I couldn't, in good conscience though, do that to him. Even though he'd only left me $61 the week before, I just couldn't do it. I'm not that type of person. That still left him $273 last week. This week, tonight, he called and reported my ATM debit card lost or stolen, and had it deactivated on me. He pulled his entire check out. He left me exactly $15.40 to live on. I've sat here with tears running down my face since 11:30pm.
So what's my point in this huge, long, complaining post? I hate my body. Plain and simple, I hate my body. I hate it, because I can't work. Not only is it bad that I can't bring in a paycheck to support myself and my daughter, and can't make money to pay the bills with, but I can't even have the dignity of earning a paycheck. I'm denied that pride of working and earning my own money. I can't feel the empowerment of knowing that
I earned this money. My husband's stress level? The 1st thing out of his mouth was "your illness". The 2nd words out of his mouth was "bills". So, if I didn't have a crappy sick body, he wouldn't have been stressed over me having an illness. He also wouldn't have been stressed about bills, because I could've gotten a job and helped out paying those bills. I've thought long and hard tonight, about whether I hate my body, or I hate Fibromyalgia, Arthritis, Tarlov Cysts, Bone Spurs, IBS, Asthma/COPD. I came to the conclusion that while I
do hate these diseases, I have to hate my body the most because if my body would've just cooperated, then none of these crappy diseases would've invaded it.
I've racked my brain so hard the last few weeks, trying to figure out a job that I may be able to do to earn money. I just can't figure anything out because 1. I'm in bad pain all the time. I can't stand for more then 5-10 minutes at a time without it bringing me to tears. I can't sit for longer then 10-15 minutes at a time, or I'm in pain + so stiff when I go to stand that I can't hardly walk. 2. I can't rely on my memory. Fibro Fog is bad. I sat for almost 5 minutes today with my hands on the keyboard, trying to think of what the heck my FB password was. I've had this same dang password for years now! 3. My insomnia is terrible. Sometimes I can't go to sleep at all and I'm awake for almost 48 hours straight. Sometime I can get 4-5 hrs of sleep. It isn't even safe for me to drive a car when I haven't slept for 48 hours at a time, let alone the additional brain fog it produces. The
only thing I can think of is public speaking. A seminar wouldn't last over 2 hours and I could sit/stand as needed while doing it. It isn't an every day job. It'd be a couple times a month, for a couple hours at a time. My oldest daughter, who graduated from DU last June, is now 1/2 way through the graduate program at DU. She suggested to me a couple nights ago that I write articles on what it's like to live with fibromyalgia and submit them to magazines. She also suggested I write a book, on the same topic. I actually got excited about the magazine article submission idea, but all it took was 10 minutes of researching to see that wasn't going to happen. Most of them, says in the submission guidelines, that you have to already have been published in a national magazine to even have your article read and considered. The one's I found that you didn't have to already be published, only accepted submissions on certain topics. -One's that living with fibro and/or chronic pain conditions didn't fit into. A book? I hardly believe that would ever pan out either. Yes, I know you can self-publish on Amazon. I have a friend who's husband has self-published 3 or 4 Kindle books on Amazon now. I've just been out of school too long to really have the grammar I'd need for a book. Also, there's already about a million books out there on these topics so would anyone really buy it? I don't know. It all just comes down to I hate my body. I feel that because of it, I've not only lost my husband, but I've lost my dignity and pride. I've lost the ability to provide for myself and my family. Between the fibromyalgia induced depression, and my husband not even caring if I can pay the bills and support our daughter, my depression is pretty bad tonight. Again, I hate my body.
