autoimmune – Momginerd

Hello Momginerd fans,

I have been remiss in not updating the blog lately, but I PROMISE I have a good excuse. I have been dealing with some pretty major heath issues. I feel comfortable posting now, that we have ruled out any life-threatening issues, but I am still searching for answers.

I have RA, and for a chronicle of that please see: My body is trying to kill me, which details some of the trials and tribulations of living with an autoimmune disease. About 6 weeks ago my rheumatologist increased one of my medications, and either coincidently or as a side effect, I have developed some “interesting” neurological “disturbances.”

Including: numbness on the left side of my face, lack of coordination/vertigo, visual halos/auras/floaties, losing my words when speaking, and numbness in hands and arms (mostly concentrated on the left side). Through process of elimination we do know 3 things:

1. I have a BRAIN, and she is gorgeous. I know because the doctor gave me a CD and I can look at her whenever I want!

2. I do not have lesions, aneurisms, tumors or other brain related abnormalities that could be causing my issues.

3. I do have some spinal issues with 4 protruding discs, but again they may explain SOME symptoms, but not all.

What we do not know, but suspect, is that I probably have a combination of issues (yeah, yeah, enter complicated woman comment here) that are causing my problems. We believe the hand issues are caused by the protruding discs, so I am going to physical therapy. I most likely have Hemiplegic Migraines which explain the other effects, and some residual side effects from the increase in the RA medication, methotrexate. I have had migraines in the past, but never one that has lingered as long as this one. I basically have been living with some level of a headache since the beginning of September. Most of the time I can power through and move on, but sometimes they knock my flat on my ass. NOTHING makes it go completely away, and I can now set up a side business dispensing drugs, if needed, since I have been prescribed everything from Imitrex to Vicodin to try and get these headaches under control.

I used to look human, but I have
had 4000 Xrays in 1 month

I am anxiously awaiting yet another call with results of yet more tests to see where the next step will lead. Most likely that will be to a neurologist and a pain clinic….which I am sure will end up in yet more tests so that I finally cease to look human and more resemble this a halo of myself, and more drugs to take up space in my overflowing aresenal….

Until then, the good news is my doctors (damn, that is scary to have to put the S after it), agree that I am to take it easy and play hooky, I mean work from home, as much as possible. Thankfully, I have an awesome team who understands and really do not NEED me daily to do their jobs!

Thank you all for your patience with me, I promise once all this is sorted out, I will be back full of snark and sarcasm per usual!

Lots and lots of love,Nic

Sorry Nic, your autoimmune system is shot

I have some serious issues with my autoimmune system. It is like my body is Long Duck Dong from 16 Candles screaming “Aaaaaauuuuttoooooiiiimmmmmuuunnne” and then my body is the car he describes as destroying. Here’s a clip for those of your born after 1980: Drunk as a Skunk (I highly recommend you watch this movie at least 500 times, preferably with your girl-friends and learn every single word). I have issues with both my thyroid (Hashimoto’s Thyroiditis) and my joints (Rheumatoid Arthritis). Basically, my life is a series of different “cocktails” of medications to try and tell my autoimmune system to STFU. And, unfortunately, these cocktails are not Mai Tais or Martinis. They have side effects much worse than too many Hurricanes at Pat O’Briens in New Orleans, and don’t come with the fun of actually drinking said hurricanes and enjoying the nightlife in the French Quarter. Instead my nightlife is more filled with the fun of “how many times will have to get up at night to go to the bathroom?” And, “hmmmmm are those ACTUAL spiders crawling on my skin, or am I just bat shit crazy?”

My newest cocktail is 7 pills and a weekly self injection of a chemotherapy drug. Oh yea, who wants to sign up for my kind of fun? Nothing like sticking a big needle in your leg knowing it is going to make you feel like Hell for the next two days, am I right? Then I get to have a nice purple bruise that is just starting to fade when I get to go through the fun ALL OVER AGAIN….every single Friday. Whoo Hoo! Let the weekend begin!

There is no fictional or non-fictional reading I do that scares the bejeezus out of me like reading all the warning labels on my meds. It makes me feel all warm and fuzzy when I read: This medication has SERIOUS side-effects, some of which can lead to DEATH….then there is this really small writing at the bottom that basically says that my doctor thinks it is okay to risk death, as long as I don’t actually die. Headaches, nausea, vomiting, diarrhea, fatigue, eye twitches, dry mouth, rashes, kidney failure, thinning corneas, hair loss, dry skin, etc are all acceptable. My guess is if I did actually die, he probably wouldn’t give that prescription out anymore, but that is just a guess. I actually asked him once if he has ever lost a patient to death from this cocktail. His response? “Not that I am aware, however, I have had some patients not return for follow-up appointments, I assume they got better.” Um….think it is because they are DEAD, I asked? *insert sounds of crickets* Then he responds, “Well you Engineers are always over thinking things, you always look for the statistics and want to know EVERYTHING.” Needless to say, I am thinkingI am not his favorite patient, and I am guessing he could have given me a smaller needle size for the injection. Next time, I will ask him ;-).

Okay, my needle isn’t that big, and I don’t look quite that crazed

The best part of autoimmune diseases is that they are always hanging around like that Easter Egg that was lost under the couch….you never know when it is going to crack and then you will have to tear apart the entire house to find where the smell is coming from (true story). I will go months and feel great, then the next day it is like a Mack truck drove through my bedroom with spiked snow tires, ran me over and then backed up to be sure it fully mangled my body. The Cocktail is supposed to help stop that truck. Fortunately, it does, for a while. Unfortunately, your autoimmune system has the ability to become immune to cocktails, so you have to trick it with a new one. Talk about irony, eh? When this happens, it is back to the doc for a new cocktail, and a new set of “side effects” that may or may not kill me…Oh, and the process of determining the next cocktail involves lots of blood work, x-rays, MRI’s, cortisone shots (I had 2 in the soles of my feet most recently), and pinching/prodding. I swear, I have been x-rayed and MRI’d so many times I should at least have some superpower like Spider Man or at the very least glow in the dark!

I am on week 3 and trip to the bathroom 1002 on my new cocktail. The all mighty doctor said I have to give it at least 6 weeks to calm down the side-effects and know if this cocktail will work for me…..for awhile.

Until next time…I will be in the bathroom.

Nic

Tag: autoimmune

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Autoimmune…..Or, Why is my own body trying to kill me????