A little look into my life...

A little look into my life....

I am very honest in the fact that I truly believe I have had Fibromyalgia or a pain disorder since I was born.  I was 2 years old when I started stumbling and twisting my ankles.  I would cry for hours instead of the normal few minutes here and there.  

I remember a very blunt and vivid incident when I was probably 12/13.  I fell off the front porch of our apartment (normal step 6-8 inches).  I twisted my ankle so bad that I tore the ligaments in my ankle.  A very painful experience but because I would only cry in front of my mother they claimed I wasn't really in pain.  OKAY, REALLY???? 

No, Let me explain it.  Starting at 2 I began experiencing pain worse than any child should.  So excuse me that 10 years later, the only person I trusted to come into that pain filled world was my mother.  Even she began to believe the doctors.

Oh, I was attention seeking; No, I was exaggerating, I had a low pain tolerance, I was being a baby, I was sheltered.... and the list goes on and on.  I will never look at doctors the same because of what I went through growing up.  

Now, let’s add to the Fibromyalgia (or the possibility of a pain disorder) the fact that my childhood SUCKED!  My parents divorced at the ripe YOUNG age of 5.  I was about to start my Kindergarten year of school.  My father literally left in the middle of the night and did not even tell me goodbye.  My mom had a miscarriage that I actually remember.  (Side note: She didn't “tell” me I just knew she wasn't well as most kids do. I walked in the bathroom just as she was cleaning herself up.  Enough said on that.)

I then was in a tug of war between my parents. Actually more of a LET ME PULL THE HELL OUT OF MY DAUGHTER by my Dad.  My mom was not perfect in her life, but in mine she was.  I never went without. If I did it wasn't to the point that I ever felt I was missing something.  My father on the other hand was very much in and out of my life.  He would degrade my mom because she was on welfare.  She was 17 when she met him, got married, and got pregnant with me.  She worked up until she was married and he joined the Navy and they moved away.  She was a wife and mother until my father left.  (Yes, I was a Navy brat (GO USA!!!!) for the first 4 years of my life.)

My mother was always by my side.  I will say she met a man who was not good for us at all.  He was an alcoholic and drug user.  The only good thing about him in our life was my sisters.  He was a major stress for my life up until my mom met her current husband within one week of me meeting my first husband.  At that point my mom had finally kicked him out.  So from the time I was 5 until I was 18 (13 years). I had to worry about abuse to my mom. His alcoholic idiotic self would beat my  mom, come in drunk, break our furniture and so forth.  That added a lot to my stress load.

So back to my mom being a great supporter.  She always believed in me.  She still does.  So when I started seeing my mom complain in pain, I knew something was wrong.  It took several years and many doctors telling her different things before she was diagnosed with Fibromyalgia.  She still didn't get special treatment just the normal pain meds and a sucky Rheumatologist. 

After many years of not knowing why I was feeling the way I was.  I was diagnosed with Fibromyalgia in 2008.  I found a doctor that listened to me.  She was amazing.  My battle for those 30 years was very real.  She stated (in her opinion) that Fibromyalgia could be hereditary.  More exactly, she said, “How can I say it's not.”  My medical record follows very closely beside my mothers (minus all the lung issues due to her chronic smoking habit). 

My diagnosis was based on a pressure point test.  (Hind Site: she better be glad she didn't warn me 100% what that would feel like or I would have chickened out.)  I did flunk it or pass it depending on how you look at it  with 11 of the 18 trigger points being major.  That along with my chronic pain, loss of energy, and more things I can't even remember today.   The doctor referred me to a Rheumatologist.  

I wasn't able to see him for 2 ½ years due to him not being covered by my insurance plan.  OMG, when I did, he was pissed!!! He said I not only had Fibromyalgia (16 of 18 trigger points at this stage were major) but he wanted blood work.  11 tubes of blood later and 3 weeks waiting on the special tests I was sitting on his exam table with my bestie beside me.   He told me from my exam's and blood work I had more than just Fibromyalgia.  He informed me that I had Rheumatoid Arthritis and LUPUS (non active).  

I will never forget that day. It rang through me like a wrecking ball.  How was I going to deal with these two diseases on top of what I was already dealing with?  Then it dawned on me... I had them the whole time just now I could possibly get some medicine to help the symptoms.  I found a little relief in that. 

Now here I sit with active LUPUS, Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease, Spinal Stenosis, Chronic Fatigue Syndrome, Anemia, General Arthritis, Bursitis, Migraines, and the list goes on.  I am blessed to say that I am raising my now 7 and 9 year old children.  I keep my house managed (ok not every day but give me a break please) and stocked up

  

I started this by stating I believe that I believe my Fibromyalgia is hereditary.  Well most of my diagnosis' are things I have had since I was born.  They were in my DNA, cells, blood, and etc.  Somehow I was going to have these things.  I just wish they would find a test that could find these things way earlier.  I know they have come leaps and bounds with Juvenile diagnosis' since I was young.  I wonder if they came out with a test that would tell me what my children will have if I would actually have that test ran.  Or would allow them to fight life with all they have and not worry about it until the symptoms came up.... Makes you think.

Brandi

Marital Guilt

It hurts to have Fibromyalgia in more ways than may be obvious at first glance. I believe that Fibro creates even more emotional pain than it does physical. Nothing reaffirms the emotional pain more than my husband's eyes when I see all hope crash and burn whenever he comes home and finds me still hurting.

There is always the space of a breath after he asks me how I feel where I have to make a conscious decision between confessing my pain or keeping it to myself by avoiding the question or lying. I know that if I decide to choose honesty I will see that look of disappointment and pain, and feel horribly guilty for being the instigator of those feelings.... especially when he comes through the door after work smiling and one look at my tear-stained face wipes the smile off his for the rest of the night. There is no way to deny that I am the cause of his pain, even if I'm not causing it on purpose. There is no way to deny that my Fibromyalgia ruined his happy. How can I not feel guilt at this?

Sometimes I've been in a flare for so long that when I tell him that I hurt, his only response is “What's new about that?” That's as hard to deal with as the look in his eyes. It forces me to remember how much time we have lost with each other because of the pain or fatigue. I know that his anger isn't directed at me, but at the disease... but I still feel the guilt for being the host of the disease.

If I choose to try to protect him from the truth I will pay a heavy price for the strain of trying to carry the lie... and in the long run, I most often fail miserably. The fact is that the better job I do of hiding the pain, the higher the price I will pay, the longer I will be paying, and the sooner I will have to pay it. And I usually try to hold on too long.

On my husband's birthday I held on as tight as I could, determined to make it special for him and not let my Fibro kill yet another BBQ. That night I broke down and the pain I'd been pushing away caught up to me like Arnold's secret son. It's a good thing the next day was Mother's Day and he had already planned to wait on me hand and foot, because he probably wouldn't have had much of a choice. That flare ended up lasting two weeks and making my husband pretty damn ticked I stressed my body out that badly... and making him feel guilty that I cause myself pain for him.

The really sucky part is that no matter what I choose, we are both going to lose. If I tell the truth, he's unhappy, and I feel guilty, and then he feels guilty because I feel guilty. Or I don't tell the truth, and I'm inevitably caught, making him feel guilty for making me feel like I have to lie, so I feel guilty, and so on, and so on... until we're both just walking people-shaped sculptures of misery and guilt... alternately sharing our feelings and then keeping them secrets... and keeping the cycle of guilt and frustration going.

I know what's probably going through some of your minds, because I've had those thoughts too. I'm the one that's sick, he should be extra careful not to upset me and stress me out further.... he needs to keep a tighter lid on his emotions and he has no right to be angry..... WRONG!!!!!!!!

No one ever grows up saying "I want a sick wife, a pretty much nonexistent sex life because she hurts too badly to make love, to go to work every day while she lies in bed popping pills and then to come home and take care of her, a kid or two, cook dinner, put them all to bed, and try to find the energy to clean up after holding basically 1 full time and 3 part time jobs... while never having any money to spend on myself because all the extra ends up going to medical bills.”

I am not the only one that saw my future darken with my diagnosis. He may not feel the physical pain of Fibro, but he feels the emotional toll of it as deeply, if not deeper, than I do. He is even more isolated than I am... because who really understands what he is going through? I at least have support groups and friendships with women in the same situation I'm in. Like most men, he feels a strong responsibility to protect and take care of his family, but there is no way he can protect me from my own body. He can't fix me... and each moment is another reminder that he's failed to keep me safe.

He tries so hard to hold in his frustrations. I am in awe of that strength... I don't think I could do what he has done for me over the course of our relationship. He is an amazing husband, a wonderful father, and a fantastic friend. He is an amazing caretaker and nurse. But his guilt is tangible when he reacts sarcastically or with anger to my pain.... Or when he "allows" me to push myself too hard.... Or when he knows that I caught that heartbroken look when he gets home from work and asks how I'm doing and I am not able to tell him I feel amazing.... Or when he's massaged me for so long his hands hurt and he has to stop.... Or when I tell him there's nothing he can do. And I think that that's a big problem... because it's totally okay for him to have those feelings. It's human, and it shows that he cares about me... because if he didn't he wouldn't get so upset.

But we can't live like this. I can't lock myself in the bathroom with the shower running to cover the sounds of my sobs when he gets home, like I did only days ago. I can't continue to have warring emotions when he comes home... part of me desperate to see his beautiful hazel eyes smiling at me and feel his arms around me in a tight hug, but the rest of me knowing that what I will actually see is those eyes darken in disappointment when he realizes that tonight will be another one where he is unable to relax. He needs to be able to express his feelings about my illness and what my being sick means for him. And we need to stop keeping our negative emotions secret and bottled up.

The only way to fix things is to really focus on communication. Maybe over sharing would be beneficial for a while, until we get used to not bottling up. Maybe if we let it out, it won't really be a big deal anymore... and we'll be on a better track to individual and marital health. I know that if we don't, Fibromyalgia is going to drive in a wedge that may never be able to removed, and I find that to be completely unacceptable.

How do you all keep your relationships healthy? I know both Brandi and I are eager to hear what works for others.