My Journey

My early to mid twenties were pretty uneventful health wise. I was a young single mum to a beautiful baby boy. The pregnancy was normal, labour and delivery, fine. I chose to breastfeed exclusively, that went without a hitch. The recovery time went like clockwork and I was back to my pre-pregnancy weight of 125 lbs by about the 9 month mark.

Like a lot of young adults, I worked hard, played hard, but, maybe more telling of things to come, I also rested hard. Never really a morning person, I was more active in the afternoons and evenings.

Where Things Start To Go Wrong – 1996 to 1999

Starting around August/September I regularly woke up with headaches, this would go on for days at a time. I would take over the counter acetaminophen with no relief. By mid September of 1996 I went to the doctor for the first time in relation to my changing health. I explained the nature of my headaches, he recommended I take acetaminophen and ibuprofen together. It seemed to have worked, but this is, as I recall the beginning of my downward spiral. From this point forward I have a the general feeling of being unwell, nothing I can put my finger on, but I know that something definitely  is not right.

In late winter of 1997 I suffered from what can only be described as a major mental breakdown. I did seek treatment for depression and was put on anti-depressants. I stayed on the depression medication for approximately three months, until I recovered my ability to sleep properly through the night.

After I recovered my ability to sleep, I no longer felt depressed, my mind seemed to have recovered. But the general state of my health did not improve. Now, I know that some could argue that I was, still in fact, depressed, that I had not fully recovered and that I stopped treatment too early. To that I can only say at the time and even still today, I believe that these were the early signs of thyroid disease.

I continued to go to the doctor regularly with complaints of not feeling well, symptoms included: Excessive fatigue, poor tolerance to cold temperatures, constipation, weight gain, dry skin, menstrual irregularities. As time went by the symptoms mentioned continued to get worse. By mid 1999 I gave up going to the doctor with my health complaints.

There is one bright spot, during this time, I did meet the man that I call my “Sweetest Love”. He is a great addition to our little family. And given the story to come, I could not have picked a more loving, understanding, caring  or committed soul.

It Should Have Been A Magical Time - 2000 to 2002

In the early weeks of the new millennium I find out that I am pregnant with my second son!  It was a planned pregnancy and we couldn’t be more excited. Looking back it’s a miracle that I was even able to get pregnant.

I just want to do a quick recap on my first pregnancy, I started at 125 lbs and finished at 155 lbs and recovered to my pre-baby weight of 125 lbs.

Seven years later, my second pregnancy did not go as smoothly. My starting weight was 155 lbs and I only ballooned from there. Things don’t start to look off until my 7th month when during a doctors visit the doc tells me my baby weighs about 8 lbs! The doctor asks “How far along are you, 8 1/2 months?” “No” I say “Are you sure?” the doctor asks, “Yes, I am sure!”. It’s at around this time that I start to swell, my hands, face and feet. My feet are so swollen that only my slippers will fit me. My last check up before the birth I weighed over 210 lbs, I was so big, and beyond uncomfortable. Approximately two weeks before I was due to be induced I developed a rash, it started around my navel area where coincidentally I was also developing new stretch marks. Quickly went off to the doctors, it was diagnosed as PUPPPs, Pruritic Urticarial Papules and Plaques of Pregnancy. Great! In the short time from their appearance to the induction of labour they spread over my entire body. PUPPPs is an auto immune reaction to stretch marks, usually seen in first time pregnancies. But this was not my first pregnancy and these were not my first stretch marks. Why now?

My son was quite comfortable where he was, feeling a little shy maybe. Two and a half hours after being  induced my son was born on a lovely Sunday afternoon in September, 10 lbs 3 oz! This is where things get dicey, being as overweight as I was and as large as my son was I started to hemorrhage, there was panic amongst the nurses, they had a hard time getting the bleeding to stop. The bleeding continued for 5 to 7 minutes and I was starting to loose consciousness.

Luckily for my family and I this story does not end here.

The next few weeks and months were a blur. Days after being discharged I was back in the emergency room with very sore and tender  breasts, I was diagnosed with Mastitis. PUPPPs made another appearance, but now there is no pregnancy and no new stretch marks. WHY??? With in the first few weeks both my son and I had thrush, he had thrush in his mouth and I had the infection in my breasts.

By December 2000 I am feeling very un-well. Extreme exhaustion, slowed/slurred speech,  severe mental changes including hallucinations, disorientation, sparse, dry hair, and loss of the outer thirds of the eyebrows, puffy face, hands, and feet.

Five years after the appearance of symptoms I was diagnosed with Hashimoto’s Thyroiditis in February 2001, at the time of diagnoses my TSH was well over 100. I was started on Eltroxin, and tested every six weeks, continued to adjust my dose till optimized. By the fourth week things are starting to look up, the post baby weight I was holding onto was melting away, all the hypo symptoms were starting to clear up, the medication seemed to be working, I had no complaints.

I educated myself on my disease and found some great information about using a T4/T3 combination of thyroid medication, I brought this information to my doctor and he agreed to a trial. By August of 2001 my optimal dose was found but I still did not feel well. I was tired all the time, my periods were “off”, low stamina and a myriad of other symptoms. My doctors insisted that my thyroid was fine and there was nothing wrong with me. Feeling better than I have in years I ignored my gut feeling that something bigger was wrong.

In March of 2002 my health is taking another turn for the worse. The fatigue was getting unbearable. Every afternoon I feel shaky, a complete inability to handle stress, I feel overly emotional, like I could cry. In April things continue to get worse, I have frequent headaches, episodes of vertigo, my ankles start to swell and are periodically painful. But mostly it’s the fatigue, shakiness, stress and urge to cry most days that have me worried. In May I go to the doctors and let him know that I have experienced severe depression in the past and that maybe that’s what I am experiencing now and if that’s the case I want treatment, right now. I do not under any circumstance want to go back to the place I was before. And if I need antidepressants for that not to happen, that’s what I will take. The doc asks me a few questions, declares me “not depressed” says “hey you’ve got a couple of kids, your tired, maybe you just need to get out of the house more often”. OK.

My ankles are sore and swollen all the time now, when I wake up in the morning its hard to move. All my major joints ache with arthritis,  shoulders, elbows, wrists, hips, knees and ankles. Over the counter medication is not working. Moving around hurts so much I involuntarily weep. My whole body is inflamed, from head to toe. As the days go by it’s getting harder and harder to breathe. Approximately three weeks after the doctor declared me fine, it’s time for me to go to the ER.

It’s a typical ER experience, you check in, they take your vitals, make sure your not about to drop dead, then you wait for hours to see a nurse and a few more hours before you see the doctor. The nurse hears some abnormal breath sounds, and I get sent for some x-rays. There is something going on, they don’t know what, then I was told they are keeping me for observation. They keep me for five days and run every conceivable test, blood tests, CT scans, MRI, Ultra Sounds…

Once home I continued to experience severe arthritis, headaches, fevers, severe fatigue, and shortness of breath. A strange rash shows up, large, painful, round nodules, the circumference of a large grapefruit on my legs. I report this to the doctor, he can now diagnose me with Sarcoidosis and the painful rash is called Erythema Nodosum.

The pain starts to subside, the fevers show up less frequently now, the rash goes away, but the bad news is not over yet. On one of my visits to my rheumatologist I mention to him that I think I might have carpal-tunnel, the joints in my hands hurt, poor circulation, cold hands, weakness in my hands and arms.

More tests, more doctors visits and low and behold I have another auto-immune disease. In September of 2002 I was diagnosed with Takayasu Arteritis.

This disease causes a narrowing of medium to large sized arteries. There is the potential for this disease to narrow arteries to major organs, like liver, kidneys, heart, obstruct blood flow to the brain, things like that. For me, the disease narrowed the arteries to my arms and legs. Due to the narrowing/scaring of the arteries in my arms there is decreased blood flow, with decreased blood flow there is a lack of oxygen to the muscles. This is evident when I use them for such activities as holding my baby, caring for/washing myself, carrying baskets of laundry, shaking out wet laundry to put in the dryer, making beds, basically any sustained physical activity lasting more than a few seconds, pain and cramping occurs. Most often there is enough pain and discomfort that I slow down significantly or stop the activity altogether. This damage is permanent, and will stay with me the rest of my life.

The Sarcoidosis is dormant, but due to the sudden and extreme onset of arthritis in my major joints it has left me with a certain sensitivity and the joints inflame easily, it happens every time I am active. I do take an over the counter anti-inflammatory though most times it does not help.

Waiting For Normal – 2003 to 2009

I knew that moving forward would be a challenge, with the permanent damage done to my the arteries in my arms and sensitive joints, but there was a certain finality to it and I learned to cope pretty quickly.  Some extra help from Sweetest Love, anti-inflammatory meds when I need them, I should be good right. Ummm, not so much.

In the months after the inflammation cleared up the first thing I noticed is a dramatic increase in PMS symptoms. The fatigue that I would experience was so intense that in the days before I recognized it as PMS I thought I was getting sick again. I would start looking for signs of inflammation and fever, I even considered going to the ER. It took me 3 months to notice the pattern. Before getting sick in 2002 I never experienced PMS like this.

The next six years would see a steady decline in my health with some brief glimpses of hope. My weight would fluctuate every nine months to a year. For up to one year I would weigh 130 lbs and then over the course of  four to six week period I would gain enough weight that I would no longer fit my clothes. I would maintain that increase for approximately one year. All of this despite healthy eating habits and supposedly normal thyroid labs. I was stumped. Then just as magically, over a four to six week period I would lose the weight. This happened over and over.