I’ve been trying to figure out what has been going on with my body for over four years now. When I got pregnant with my son, I just knew it wouldn’t be an easy pregnancy, and I was right. I’d had problems with unpredictable monthly cycles and pain for as long as I can remember. It was so bad that at 13 I was put on birth control pills to regulate my cycle and help with the pain. It didn’t help with the pain, and it continued to get worse over the years; to the point that when the pain hit, sometimes my knees would actually give out from under me; not fun in the least. And of course doctors didn’t have a clue; or they just didn’t believe the extent of the pain I experienced. They were at a loss, and so was I.
My son was my 4th pregnancy; so I knew that having one of those pregnancies where you feel great and love the feel of your child moving and growing wasn’t going to happen. At around 7-8 weeks the nausea started, and I literally couldn’t eat…anything. So I really didn’t put on any weight until my 3rd trimester. And nothing helped; it was constant 24/7 misery. I also experienced a lot of pain every time my son moved or kicked. The doctors didn’t really believe me; I was under a lot of stress. I threw my now ex-husband out of our home, and had to come to the realization that I was going to have to raise our son alone. He wouldn’t get the help he needed; and our last argument concerned whether or not physical punishment was acceptable. His argument included that it was “none of my damn business if my father-in-law was abusive…that he (my ex) needed and deserved to be beaten by his father when he was a kid because he was disobedient.” Because children are just known for their obedience…really? (That’s a rhetorical question.) I didn’t have to be a mother to know that the job of a child is to learn, which means that they will push every button and try to cross every line you have. How else are they supposed to figure out what’s right and wrong; what they can get away with and what they can’t; what’s acceptable in life and what isn’t. You never raise a hand to a child! So, as so many other 6 month pregnant women would do, I blew. He either set up family counseling and made the effort to realize how very wrong he was…or he just wasn’t welcome in our lives. We haven’t seen or heard from him since. He’s never once tried to see our son, and I’ve never seen a penny is support.
Because of all of this personal stress, I couldn’t walk a block without having contractions, and every time my son moved or kicked it was extremely painful. The morning I went into labor everything appeared fine. All the usual progressive signs of labor starting were there, and I wasn’t very uncomfortable…considering. So after my water broke I informed my mother it was time to head to the hospital. In retrospect, I really wish I had hired a Duala. I needed an advocate to stop the ediots in the medical profession from making my labor and delivery of my son such a horrible experience. I wasn’t exactly in the best of positions…trying to bring a living being into the world, and my mother didn’t understand what was going on any more than I did. It wasn’t until afterwards that I found out the absurdity of what they did, and that I really could have refused some of what they stated was necessary. But I didn’t know. A Duala would have known; so I highly suggest that every woman, regardless of how many children you have, have a Duala. Their entire purpose is to take care of you, make the experience of giving birth to a child a wonderful experience, and be an advocate for you on what your wishes are during labor. I had no idea how to speak up, and I was scared…so giving birth to my son was one of the worst experiences I’ve ever had. 26 hours of labor, half way through, the pain hit me so hard that I began screaming uncontrollably. Not a single nurse came to my side to help comfort or calm me, or help me breathe. They ran out of the room, and came back with a doctor who pulled me into a sitting position, pushed me over to round my back, told me not to moved, and gave me an epidural. Something that I had specifically put in my written birth plan that I didn’t want!
So after 26 hours I’m informed that my cervix is closing and an emergency c-section is required. I knew something wasn’t right when I could feel the razor when they saved the area my doctor would be cutting. So while I’m open on the operating table, the epidural just stops working, and I start screaming that I can feel it…at that point I’m gassed and knocked out.
After I wake up, I find I’m in a hospital room, my mom has my son. He was fine…not a single health issue. Of course they did all the completely unnecessary medical injections/tests that I specifically said I did not want done…so let’s just put it this way…everything I wanted for my son’s delivery, didn’t happen. I’m then told that it took almost 2 hours to repair the damage inside me…apparently my uterus kept tearing (so that certainly explains the pain I was in every time my son moved.) After two days I left the hospital, they wanted to keep me longer, but I needed to get out of there.
8 weeks later, I’m back in the OR for unexplainable abdominal pain. They open me up, and I end up with a full hysterectomy. And this surgery took another 2 hours (should have been 30 minutes). My doctor explained to me afterwards that there wasn’t even a medical term for what they saw. My uterus had literally rotted and fallen apart inside me. She said all that was left was goop; which took over 2 hours to clean out of my abdomen.
It turned out; my son is truly a miracle child. They (the medical professionals) can’t explain how I was able to make it through the pregnancy, or how I was able to deliver a healthy living child. Such medical cases always end in either miscarriage, or a still-birth. My son was obviously meant to be here, and every day (even on the days when he drives me out of my mind) I watch him learn, and grow, and experience. He amazes me, and I’ve never loved anyone so much in my entire life. However, it took my some time to fully realize and appreciate how precious and amazing my son is. I went through a year of postpartum; I had to really rely on my mother to not only help care for my son, but take care of me because I just couldn’t do it. It has been a struggle on both our ends, but I will be eternally grateful for what my mother did. She stepped in and literally raised my son when I couldn’t.
After the second surgery the medical issues really began. Within a couple of months the weight started coming. I’m now 50 lbs. over-weight; and it’s just doesn’t want to go anywhere. After about a year and a half, the chronic fatigue hit. I was a dancer, performing all over the AZ with my troupe. I loved latin dancing, yoga, palates, zumba. But slowly the fatigue made all of these activities impossible. And the weight just kept coming. About a year after that, the insomnia started. I’ve had to take a prescription sleeping pill every night for the past 11 months, and I’m going to have to continue using them for an indefinite amount of time. I don’t even have the energy to keep in touch with friends; so every day I come home with my son and it takes everything I have just to make sure he and the house and dog are taken care of. And finally, the chronic muscle pain began about 6 months ago.
It began as a sore back that just wouldn’t go away; so, I decided to try and get a massage at least once a month. But the pain got worse, not better. So my next step was to go to a chiropractor. I began getting adjustments, and the pain got even worse. I’ve tried acupuncture…no luck. The pain is so bad now that I’m on pain medication 24/7.
And what are my medical professionals doing you might ask…scratching their heads mostly. Don’t get me wrong, I don’t blame them. I realize that today’s doctors just aren’t trained to look at the whole body. They’re trained to do whatever they have to in order to get rid of the symptom. This doesn’t help the patient (me) at all. Masking and covering up symptoms isn’t going to make the situation better. But my numerous doctors have given it their best. I’ve gone through about 7 different ones now. I’ve had more blood work done than most people have in their entire lifetimes. I’ve had ultrasounds, scans, xrays, MRI’s, you name it. We’ve looked at my vitamin levels for deficiencies, my hormone levels, my thyroid, my bones, my joints…I’ve been tested for everything under the stars. I did have a slight vitamin B deficiency which has since been corrected. I do have a 1 centimeter growth on my thyroid, but they say it isn’t affecting my thyroid levels at this time and we’re keeping an eye on its size for growth. The MRI showed very slight arthritis in my back, but nothing major. The tests have told us nothing, but my symptoms are very real, and continue to get worse. Oh, and I’ve lost almost an entire inch in my height. I’m short as it is…so that wasn’t exactly a fun discovery. I used to lie and say I was 5’4”, because I was closer to 4” than I was 3”; not any more.
So, what’s next on the list of diagnosis that my doctors have given me…fibromyalgia. My current doctor, a very nice woman, but still, being educated in the current medical world in the good old US of A automatically gives her a disadvantage regarding my treatment. Look at the symptoms, not the person; but I’m still hopeful. I’m on pain medication so I can function, sleeping pills every night so I can sleep, and 2 different medications for fibromyalgia. They may work, thus far they aren’t. But we keep trying. I can’t live on pain medication, nor do I want to, but that’s the world I’m living in right now.
My doctor tells me that although it isn’t medically proven, fibromyalgia appears in a number of people after a physical trauma in their lives. I’d certainly say that my pregnancy, labor, and postpartum would constitute a physical and emotional trauma. A wonderful and bonding experience with my child…it was not! And I hope that my medical issues haven’t caused any undue emotional problems for my son, he certainly doesn’t deserve the blame for any of this. He’s been the innocent bystander who unfortunately has a mother with continuing medical problems.
The medical literature on fibromyalgia isn’t particularly inspiring, but I’m still investigating all of the information I can dig up. My doctor says that once we find a medication(s) that work for me, my fatigue and pain should let up…let’s hope! I wake up in the morning and my entire lower half of my body just throbs with pain, my back has shooting pains, and It just tends to move all over my body. The mornings are the worst. I just want to curl up in a ball and cry. But I don’t (at least not every morning). I take my pain medication as soon as I wake up, and get into a warm shower. The warm water helps after the fact; during, even the spray of the water on my back hurts. If you press on my back, gluts, or thighs I’ll scream…which is what one of my chiropractors found out when they started testing all of the pain points they check when considering a diagnosis of fibromyalgia.
I’m trying to stay positive about all of this. At least I have a name for it now, even if it took 4 years to get here. And I refuse to accept that my physically active life is over. I miss all of the activities I used to do, and I want that life back. I feel so uncomfortable in my own skin. I look in the mirror and it’s so hard to not be disgusted by what I see, but I try. There are a lot of days that I cry, but no one sees it. I keep a smile on my face, do everything I can to not give in to the pain, and just keep going. If I give up, I’ll drown in this disease. I can’t and won’t let this disease rule my life; it won’t define me. I cry when no one can see because I need to release all of the negative emotions I carry around inside me, but then I take a deep breath and tell myself that everything is going to be okay. It has to be.
I will figure out how to live with this disease. It’s incurable, but others have found a way to live with it, and so will I. I will not be defined by a disease, but by who I am and how I chose to live my life. Just breath…everything will be okay.
