Scleroderma & How It’s Changed My Life
Scleroderma. It recently became my life. Although, it turns out I had been living it, or with it, for quite a few years. Now I can at least say the word, and give an explanation without getting overly emotional. Oh, happy day! You know, fifteen years ago I felt normal. I mean, I did always feel exhausted, but chalked it up to teenage depression. I swam. I wrote. I was mean… to my mom. (side note: I still say I hated *everyone*, but I think it hurt her the most. Sorry, Mom. Glad it was only a phase though…you’re the BEST around. Love you.) I did normal teenage/young adult things. Including, but not limited to, becoming pregnant. It was during this pregnancy that the first signs of “the strange and unusual” started to show up. Pregnancy #1 didn’t go well, and ended at the beginning of the second trimester.
From the beginning of pregnancy #2/darling #1, my body started to shut down. Hyperemesis Gravidarum, Weight Loss until month 7, blood count issues, sudden bouts of blindness….all ending with an emergency c-section ay 37 weeks. Of course, my boy was born perfect, and spent only days in the NICU. Even with a big, bulbous, super cute, super smart brain filled head. But my body never really bounced back. My next pregnancy was just as eventful as the first had been. Full of sickness, and disgust. This time even with 6 weeks of early labor, and stopping contractions constantly. Finally, at 36 weeks, docs gave way for the next c-section. Darling #2 was perfect & hairy like a beast. I knew we wanted to have a third baby, but I could feel my body screaming at me….pleading with me. (Family that’s reading this now, you know me. You KNOW I push everything… so, although I’ve never said these words out loud <thanks, blog> you shouldn’t be too surprised..) We didn’t wait as long as we first planned for #3. And man did I pay for it. Did we all pay for it.
Body was done half-way through. This time was the scariest. Baby was having and causing more issues than I knew possible. I had ALL of the above, including preterm labor. I had internal physical therapy to attempt to keep my “non-stretching” uterus flexible, and able to grow for the baby. (Yes. Internal. The physical therapist massaged my womb, via the ole vaginal canal. I thank this girl daily, still. Yes, girl. She and I had a sudden friendship that was nothing like I’ve ever had before. It was raunchy, and beyond uncomfortable.) That therapy got us an extra 6 weeks of in-utero, though. So, although traumatizing for all…doc knew what she was doing. The day that insurance stopped paying for that therapy (because they said it was an “unnecessary treatment”), I could feel my body change within hours. And I know that sounds freaky, but it’s a fact. By 5am the next morning, I had paged my OB. She called back immediately, and asked for the 411. I immediately went to the office, in tears. At 34 weeks, this was not a good choice to be making. I could feel my body….breaking. My doc and I had a relationship of great trust, built on many years. She did some tests, and although they were not normal, they did not speak immediate emergency. I felt otherwise. Knowing the risks to us both, I tearfully begged her to proceed to c-section NOW. Hours later, in surgery, my life and my Darling #3 hung in the balance. My uterus had ruptured, and I was bleeding out.
In the moments of seeing my doc’s face go pale, her demanding that my husband sit back down sternly, his terrified face, and feeling my body hit a weakness level unheard of….. I panicked. I knew something terrible was wrong. I couldn’t feel my chest, or lungs anymore(Later finding out that was due to the huge push of pain meds I had to endure the longer duration of pain & surgical stuff). Breathing I had to focus on. Did I mention I had a spinal for this c-section? So all of this wasn’t “forecasted“, so to speak. My uterus had split immediately apart after my doc made the first incision through skin. In that instant, my baby was without oxygen and blood supply. I was hemorrhaging internally. I’ll now name our lifesaver… Dr. Helfgott. She’s amazing. Always in my eyes.
After some NICU time, Darling #3 came home to join the brood. Doc H patched me up enough to need a hysterectomy when my Darling #3 was 3 months old. It was then that the condition of my tissue was first determined, although not pieced together fully.
Now I’m going to skip over the next few years in one paragraph, because it was the same thing over, and over, and over… They determined after my hysterectomy that internally, I had a scar tissue problem. They brought in a special doctor from England for my hysterectomy, and he tried some new procedure and solution on my insides to try to prevent further issue. I had severe GI issues by this time, too. That was labled Crohn’s for 5+ years (but really isn‘t…). I had pneumonia 4-6 times a year, with bouts of the flu, colds, rashes, bleeding issues, and more. I grew intolerant to gluten, some grains, dairy, eggs, and soy. My hormones went psycho, as did my thyroid. And then I got super sick, beyond anything it had been. Chronic pleurisy was here, and now brought on some more lung tests. Thankfully. Turns out my left lung was working at about 50%, and my right about 75-80%. The x-rays showed heavy amounts of scar tissue, and that my GI tract was also all fused together.
Yes, now the bells are beginning to go off. For the doctors, too. Years ago, my uterus had torn from this same thing that was now effecting my lungs, and GI system. My joints were now inflamed from the side effects of it, and my skin and body were going through some telltale signs. Of Scleroderma. Although, first it was an SLE Lupus primary misdiagnosis. I also have SLE, Raynaud’s Phenomenon, thyroid issues and serious GI issues all secondary from the Scleroderma.
My days start hours before I get out of bed, stretching and trying to mobilize my muscles as much as I can. I fight with my stomach hideously in the mornings…it’s like every day is morning sickness for hours. Swallowing pills is how I spend my earliest times, normally always watching the Today Show while I do it. I would like to spend the morning typing my blog posts, but unfortunately my hands don’t work that well that early. Doing the daily household chores wipes me out if I’m not cautious and careful. Keeping up with all of my jobs is always do-able…. Just takes a lot of thought, and planning. I hide away sometimes to regain control of my body tremors, or to just lay down while the worst meds take effect. The meds I’m on now are considered chemo meds (immuno-suppressants), and their side effects listed are soo real. Although the dosage is low, the side effects are terrible. Worst on my GI system. The point of these meds is to shut down my immune system from attacking itself, while the other meds stop the build up of scar tissue inside me. My evenings are difficult sometimes, too. Overdoing it is very easy, as often puts me down for hours. Sometimes vomiting. Sometimes crippled in pain. This is often when I type. It’s an easy distraction, and I can keep my mind off of the body pain caused from “living” from the day. There’s so much I left out… the gross, TMI details….but it truly never ends. I swallow more pills at night, and hope for sleep. It’s my life sentence. See, the trouble with scleroderma is that you know your fate, but you never know when it’ll come. Or how painful it will be. Or just how long it will take.
Gone are the days of hopping out of bed, throwing on clothes, and running to the grocery. Gone are the days I can run around in crazy circles with the kids. Man, just the thought of running just now made me out of breath… I have to plan my days, and my weeks. If I have parties or adult classes, I can’t do anything in the afternoon to prepare myself with enough energy. After days of home school, I have to recharge by sitting and relaxing (or blogging!) before I try anything else. Life’s all still very doable…it’s just a little more challenging now. I always seem to run myself out of FORKS (my alternative to “Spoons”), but I have gotten better finding what things trigger my flares. And subsequently avoiding those things. My kids have adjusted, and know that sometimes I just can’t do it. They also know that at those times of my weakest, their support and maturity is the most wonderful and appreciated thing ever. Of course, they also know that once I’m back on my feet, I treat them to fun and games for all their help!
It truly does give you a different outlook on life. Less time for those people (even family) and things that cause drama and stress. More time for the things that do matter. Like my loves, and their education. And making all our lives as fun and FULLY LIVED as possible. Regardless of what you’ve been struck and stuck with…life’s still worth living. You just need to find what keeps your spark and drive lit. I’ve found mine. My husband and kids and family. My work: education, SEX (and educating about it, of course), cooking clean & recipe creating, and WORDS. Thanks for reading this part of my story. J
Below you’ll find some general information about Scleroderma. Remember, if you’re reading this as a person who is experiencing symptoms of any autoimmune issue, PLEASE get off your computer, and call your Family Doctor! Also keep in mind that what works for me, or anyone else online, could actually HARM you. I do NOT want any harm to come to any of my readers, so please be sure to talk to YOUR DOCTOR, or at the least leave a comment if you have a question or need specifics!
GENERAL INFO ON SCLERODERMA & OTHER AI ISSUES
The “Spoon Theory”: Have you heard of it? This is something that people with autoimmune diseases of any kind use to help our un-sick friends understand just what it’s like to like with this energy sucking illness crap all of the time. To read this awesome article yourself, check it out here! Spoon Theory
Definition of Scleroderma: Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.
In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.
Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.
What are some of the main symptoms of Scleroderma? Scleroderma’s signs and symptoms vary, depending on which parts of your body are involved:
-Skin. Nearly everyone who has scleroderma experiences a hardening and tightening of patches of skin. These patches may be shaped like ovals or straight lines. The number, location and size of the patches vary by type of scleroderma. Skin can appear shiny because it’s so tight, and movement of the affected area may be restricted.
-Fingers or toes. One of the earliest signs of scleroderma is an exaggerated response to cold temperatures or emotional distress, which can cause numbness, pain or color changes in the fingers or toes. Called Raynaud’s phenomenon, this condition also occurs in people who don’t have scleroderma.
-Digestive system. In addition to acid reflux, which can damage the section of esophagus nearest the stomach, some people with scleroderma may also have problems absorbing nutrients if their intestinal muscles aren’t moving food properly through the intestines.
-Heart, lungs or kidneys. Rarely, scleroderma can affect the function of the heart, lungs or kidneys. These problems can become life-threatening.
What are the causes of Scleroderma? Ironically, no one truly knows what sets off the over production of collagen inside our bodies. There have been, and still are, studies about environmental hazards triggering these illnesses, as well as hereditary and being predisposition for it.
What are the common complications with Scleroderma? Scleroderma complications range from mild to severe and can affect your:
-Fingertips. The variety of Raynaud’s phenomenon that occurs with scleroderma can be so severe that the restricted blood flow permanently damages the tissue at the fingertips, causing pits or skin sores (ulcers). In some cases, gangrene and amputation may follow.
-Lungs. Scarring of lung tissue (pulmonary fibrosis) can result in reduced lung function, reduced ability to breathe and reduced tolerance for exercise. You may also develop high blood pressure in the arteries to your lungs (pulmonary hypertension).
-Kidneys. When scleroderma affects your kidneys, you can develop an elevated blood pressure and an increased level of protein in your urine. More-serious effects of kidney complications may include renal crisis, which involves a sudden increase in blood pressure and rapid kidney failure.
-Heart. Scarring of heart tissue increases your risk of abnormal heartbeats (arrhythmias) and congestive heart failure, and can cause inflammation of the membranous sac surrounding your heart (pericarditis). Scleroderma also can raise the pressure on the right side of your heart and cause it to wear out.
-Teeth. Severe tightening of facial skin can cause your mouth to become smaller and narrower, which may make it hard to brush your teeth or to even have them professionally cleaned. People who have scleroderma often don’t produce normal amounts of saliva, so the risk of dental decay increases even more.
-Digestive system. Digestive problems associated with scleroderma can lead to acid reflux and difficulty swallowing — some describe feeling as if food gets stuck midway down the esophagus — as well as bouts of constipation alternating with episodes of diarrhea.
-Sexual function. Men who have scleroderma often experience erectile dysfunction. Scleroderma may also affect the sexual function of women, by decreasing sexual lubrication and constricting the vaginal opening.
How do I approach my doctor with my symptoms? And what tests will he suggest? I suggest keeping a journal of your symptoms, flares, of everything and take it with you to your appointment. Appointments are often short, so don’t hesitate with getting to the point. My doctor’s have always thanked me for spilling my guts immediately upon arrival. Sometimes writing things down is an easier way to remember things, too. There really is no right or wrong way to do this. Whatever works best for you to feel, and be heard by your doctor.
As for tests, it depends on how your illness is presenting. Blood tests are usually the first steps, and a lot can be ruled out with those. Not necessarily proven, though. Keep in mind it can take *years* for diagnosis, and even longer to find the right course of treatment. (It took over 10 years for me..)
What types of treatment can I expect? In some cases, the skin problems associated with scleroderma fade away on their own in three to five years. The type of scleroderma that affects internal organs usually worsens with time.
No drug has been developed that can stop the underlying process of scleroderma — the overproduction of collagen. But a variety of medications can help control scleroderma symptoms or help prevent complications. To accomplish this, these drugs may:
-Dilate blood vessels. Blood pressure medications that dilate blood vessels may help prevent lung and kidney problems and may help treat Raynaud’s disease.
-Suppress the immune system. Drugs that suppress the immune system, such as those taken after organ transplants, may help reduce scleroderma symptoms.
-Reduce stomach acid. Medications such as omeprazole (Prilosec) can relieve symptoms of acid reflux.
-Prevent infections. Antibiotic ointment may help prevent infection of fingertip ulcers caused by Raynaud’s phenomenon. Regular influenza and pneumonia vaccinations can help protect lungs that have been damaged by scleroderma.
-Relieve pain. If over-the-counter pain relievers don’t help enough, you can ask your doctor to prescribe stronger medications.
Physical or occupational therapists can help you to:
-Improve your strength and mobility
-Maintain independence with daily tasks
**Surgery: Used as a last resort, surgical options for scleroderma complications may include:
-Amputation. If finger ulcers caused by severe Raynaud’s phenomenon have developed gangrene, amputation may be necessary.
-Lung transplants. People who have developed high blood pressure in the arteries to their lungs (pulmonary hypertension) may be candidates for lung transplants.
How should my home life change? You can take a number of steps to help manage your symptoms of scleroderma:
Stay active. Exercise keeps your body flexible, improves circulation and relieves stiffness. Range-of-motion exercises can help keep your skin and joints flexible.
*Don’t smoke. Nicotine causes blood vessels to contract, making Raynaud’s phenomenon worse. Smoking can also cause permanent narrowing of your blood vessels. Quitting smoking is difficult — ask your doctor for help.
*Manage heartburn. Avoid foods that give you heartburn or gas. Also avoid late-night meals. Elevate the head of your bed to keep stomach acid from backing up into your esophagus (reflux) as you sleep. Antacids may help relieve symptoms.
*Protect yourself from the cold. Wear warm mittens for protection anytime your hands are exposed to cold — even when you reach into a freezer. When you’re outside in the cold, cover your face and head and wear layers of warm clothing.
(Doesn’t really seem like a lot to ease the trouble, does it?)
What if my friends just aren’t enough? As is true with other chronic diseases, living with scleroderma can place you on a roller coaster of emotions. Here are some suggestions to help you even out the ups and downs:
*Maintain normal daily activities as best you can.
*Pace yourself and be sure to get the rest that you need.
*Stay connected with friends and family.
*Continue to pursue hobbies that you enjoy and are able to do.
The prognosis for scleroderma has improved dramatically over the past 30 years as the ability to detect and treat many of the problems of scleroderma has improved. But if scleroderma makes it difficult for you to do things you enjoy, ask your doctor about ways to get around the obstacles.
Keep in mind that your physical health can have a direct impact on your mental health. Denial, anger and frustration are common with chronic illnesses.
At times, you may need additional tools to deal with your emotions. Professionals, such as therapists or behavior psychologists, may be able to help you put things in perspective. They can also help you develop coping skills, including relaxation techniques.
Joining a support group, where you can share experiences and feelings with other people, is often a good approach. Ask your doctor what support groups are available in your community.