A rough end to the Summer

Sometime in August I began having knee trouble. My knees started popping ridiculously with every small movement. The second week of knee pain, I started to limp while walking, and by week 3 I was on crutches full time. I have had what I call "softball knees," just general knee issues from the years of sliding and softball injuries. I assumed it was another re-injury and was confident I knew the drill to heal it. Several weeks on crutches and having it elevated with ice, and I would be great. Well it kept getting worse and I made up excuses, I over did it running errands and playing with the kids, too much cleaning ect. Finally Brian convinced me to call the orthopedic doctor to see if my meniscus was torn, and if I needed to have surgery, as it was becoming obvious it wasn't healing on it's own. I wasn't able to get in immediately and had a couple week wait, which during that time period I visited the ER in pain, hoping they could tell me what was going on. I had an X-ray showing everything looked fine & told to follow up with dr for possible cartilage damage. 

 My first appt with the doctor {that I had seen over several injuries} and he was sure after a physical exam of my knee that my meniscus was blown. We scheduled surgery for the next week. After talking with billing, my insurance was now considered out of network for that doctor, so I could continue with the surgery and pay $3300 or find an in network doctor. The amount of pain I was in, we really considered just paying it and getting it done quickly. A new doctor wasn't able to see me for 6 weeks, which was terrifying to go that long in pain. I had no idea if I should cancel the surgery or go ahead with it. But decided for that amount of money I needed to wait. I called the new doctor and set up a tentative surgery date for a week after my initial appt with him, again, 6 weeks out. My new doctor requested an MRI. Oct 1st net with new, in network, doctor. He reviewed the MRI and said that my meniscus was in tact and fine. I had severe effusion & a bakers cyst, but I did not require surgery. In fact be was very surprised anyone was willing to operate on me. He said that where I was complaining of pain, there were no tendons, ligaments or cartilage, only a joint that was inflamed. He bet all of his money on diabetes or thyroid, claiming he's diagnosed people with inflammation issues based on the location of pain, where mine was. I was sent to rule out blood clots, which I was fine. 

I followed up the next day at my pcp (primary care physician) and was sent for labs for a mirage of inflammation diseases. 3 days later got the blood work back that I was positive for an auto immune disease (+ANA). I was referred to a rheumatologist for further testing. 

While awaiting my rheumatology appt, I decided to go ahead with a pre-paid trip I  had planned in Dec 14, long before I had issues. It was a girls trip to Florida. I knew it would be a huge struggle to make it through the airport alone with two kids, in a wheelchair & with luggage, but went anyways. It was pretty much a disaster day and at one point I just had to laugh at my life and wish there were cameras following me so I could be told I was being "punk'ed", but knew it would get better. An airline agent pushed me in the wheelchair, with Briella sitting on my lap, and I held her car seat over the top of our laps, while holding Aubrey's hand, who was pulling our large suitcase and struggling to keep up with the wheelchair.  2 toddler throw ups on a plane and a toddler with spilled milk all over her on the next plane, gave for the hardest flights of my life. 

A day later my mom flew down and helped give the girls the vacation they deserved. Walking in sand on crutches isn't as hard as I thought it would be. 😜

At my 1st rheumatologist appt I was sent for more bloodwork, he said he wasn't being shy with the tests, ran everything from Lyme to celiac ect. Everything came back in the normal range, except my ANA is still positive. 

Now it's no longer just my knee that is the issue. My arms and hands are involved. My arms get so weak, sometimes painful and my hands shake. I no longer drive unless I have to, because my arms are too weak to hold the wheel, and I find myself taking my hands off of it every 10 seconds to help with the weak/pain feeling. My level of exhaustion is off the charts. I always heard of people with diseases and thought they sounded lazy when they said they couldn't clean their house or cook dinner, but here I am, a stay at home mother of two, unable to stand long enough to do dishes or heat a meal in the microwave even. My migraines and eye stabbing pain have also taken over. I have to keep my black out curtains closed during the day or I can't see due to migraines. I feel I am living the life of a disabled person, and I am only 32, with big plans and dreams. I worry of the embarrassment to my kids of mommy going grocery shopping in what we call the "beep beep" (motorized cart), even though I haven't even been up to doing that in weeks. 

At my follow up appt we discussed my newer symptoms and continued loss of use of my knee. I specifically am unable to straighten it. I have moved from crutches to a cane. My doctor narrowed down my illnesses to a short list (which is still way too long.) The great news is that all the illnesses are treated the same way, so I was able to start treatment Tuesday! I was in such a great mood, I finally had a fix!! I celebrated by going out with my mom and oldest daughter to dinner. Then came home and took my first dose, 6 pills of methotrexate. I remember all night long feeling ill. Not wanting to wake up in the morning because you know that getting sick is imminent. I was crazy sick all day, with periods of moderate nauseousness to make me feel alive again. This reminds me of being on magnesium when I was trying to stay pregnant with Briella. 

Today is Friday. Three days after I took that first dose and I am still sick. I find now if my stomach is full of ginger ale and Cheerios or toast that I'm not as sick. But I'm left scared that my next dose is quickly creeping back up and I haven't recovered from the first yet! I take it once a week. This medicine will peak at 3 months, meaning I should feel my best after 3 months. 

Anyhow, that has caught you up to now. Not sure who "you" is, as I am right now only writing this for me. 

I will end this by saying I believe I have Lupus and/or RA. When I was pregnant with Brie, I tested positive for an anticardiolipin antibody, and was told that my complications aligned with lupus pregnancy complications. 

I will also admit that I think I have given the diagnosis already in my head, so that I finally have a reason, answer, something to blame other than myself, for Briella being born sooo premature. 

In 6 weeks, I will follow up with bloodwork to make sure my liver is working correctly on this medicine. At that time we will also test more in depth for the short list of diseases to see if we can get a diagnosis. 

In two weeks we have another trip planned. Also planned way before I had any signs of trouble. We will be traveling to DC to be with my sister in law and family for Thanksgiving, then on to the Bahamas with my in laws, for a week of family fun. My kids deserve this. They deserve to be kids and have fun. After months of having a mother who is pretty much in bed all day every day, they deserve sand castles and swimming pools. So I am going to put my brave face on and attempt to give them the best week. This time Brian will be with us, so I'm not stressing, yet.