It’s been too long since my last post. Things have been crazy hectic between health issues and appointments and my boyfriends son visiting…I’ve been busy to say the least. Surprisingly I’m doing ok! I’ve been trying to make sure I’m getting enough rest and meditating when I need and making time for myself which has been nice. I’ve been working on my crocheting skills and I made a hat completely my own without a pattern! Even if the hat didn’t come out ok, I find crochetting extremely relaxing. Oh and I almost forgot, a friend invited me to a vision board party which I wasn’t able to attend but I made one anyway! She challenged me to make a health inspired board which I did and I LOVE how it came out! It was so much fun to make too!
So as far as my appointments go, I got some pretty big news last week. Monday was my appointment with my rheumatologist, actually I saw her Nurse Practitioner which is fine because she’s wonderful as well. She told me about the 14.3.3 ETA Protein and how mine is considered aggressive because it’s above .5, mine is .9. She said that my doctor is very hesitant to give someone such a serious diagnoses like RA but because RA needs to be treated early and my inflammation is so severe that we need to start treatment immediately. She said that they wanted to add methotrexate but if the skin biopsy comes back for Small Fiber Neuropathy then they wanted me to start IVIG(Immunoglobin Infusions) as soon as possible, instead of the methotrexate. I then did x-rays of my hands and feet to look for RA and to get a base line for treatment as well as have an x-ray of my chest for a base line to watch for lung issues from the methotrexate. Scary stuff!
The next day was my appointment with the Neurologist. The doctor said my sleep study came back normal, and all the blood work came back normal, BUT my skin biopsy came back positive for Small Fiber Neuropathy. Hearing that was so bittersweet! I have heard that, for a lot of people, the skin biopsy comes back negative even if they are having significant symptoms so I was very surprised and grateful mine was showing up. It is so completely validating and shocking when crazy symptoms you’ve been dealing with are found and diagnosed and actually have a biological and physiological cause!!!! Like so many people with autoimmune issues, it’s very common for patients and their symptoms to be pushed aside, brushed under the rug and not taken seriously, so when things are actually found and diagnosed, it’s nothing short of miraculous. After the doctor told me the news, I was babbling on and he told me, “You know Nancy, this is not good news.” I told him, “I know but now I have answers and now I can get the help I need!” To which he said, “This is very true. This also explains all the nausea and constipation you’ve been having. Have you been passing out?” I told him I hadn’t but I am very dizzy pretty often. He then warned me about driving and told me to be safe. JUST WOW! For over a year I’ve been begging for help from my doctors about possible autonomic dysfunction and worsening neurological issues and they either dismissed my symptoms or had no idea how to help.
It all started about 8 months ago when I was talking about my symptoms on a Sjogrens forum and someone, now a good friend of mine, commented and said “Do you have POTS? You have every symptom
of dystatoniomia (autonomic dysfunction).” I started researching and she was right! For 10 years I’ve been dizzy, had blurry vision, felt disoriented, vertigo, light headed, memory loss, bladder issues, heat and cold intolerances and problems with temperature regulation, severe weakness and debilitating fatigue, insomnia, unprovoked panic attacks and depressive episodes, all of which have been slowly getting worse up until a year ago when they all suddenly started getting significantly worse with more frequency and the neuropathy and almost constant nausea and constipatin began.
So that brings me to now. The closest neuromuscular therapist in network for my insurance that prescribes IVIG therapy is 100 miles away. They actually called me this morning and I’m awaiting to hear back from them to schedual my appointment. When I spoke with their nurse she said because I have all these diagnosis’s already and the severity of some of my symptoms that they would probably get me in pretty quickly. I’m working pretty hard on my diet and already starting to see improvements so hopefully by the time the insurance actually approves the IVIG maybe I won’t need it anymore…or maybe not as much anyway. I haven’t smoked in over a week either! 10 days! YAY!!!!! So yes, I’m super hopeful and motivated! My plan is to heal enough to where my bladder isn’t hurting as bad from the IC (Interstitial Cystitis) and I can sleep through the night without having to jump out of bed to go to the restroom (right now I’m down to about 3 times a night) and I can start weaning off of the tramadol so I can start taking the LDN again. Because LDN works off of opioid receptors you can’t take it with opiates because they wont work. I didn’t realize before when I stopped taking it that the LDN really was helping me a lot. I had more energy and my histamine responses weren’t as frequent and as sensitive. Looking back, the difference is astounding! I wish I had never stopped taking it! On top of the fact that I was already planning on taking the LDN again, I stumbled across this paper yesterday where this woman had severe dysatonomia w/POTS and she was treated with antibiotics for SIBO and with LDN & IVIG. She had SIGNIFIGANT results!!! It gave me a lot of hope reading about someone with similar diagnosis’s and symptoms who was on the same treatment plan as me and was extremely successful!. We will talk about natural antibiotics later. Anyway, I can’t wait to get better!!!!! I can’t remember the last time I was so positive, so hopeful, and so motivated!
So, what am I eating today?
Cash is tight right now so this is how you do things on the cheep! For lunch I had baked flounder with homemade tarter sauce. To bake the fish I brushed the fillets with olive oil, fresh squeezed lemon and a few drops of high quality, non-GMO orange essential oil then sprinkled with seafood seasoning. For the side, I had mixed vegetables(Broccoli Normandy) seasoned with some Lemon Pepper Dill seasoning and some more seafood seasoning. Actually, I think I’m gonna try that Lemon Pepper Dill season mix on my fish next time, that sounds delicious! And for my drink I had a glass of mineral water over ice with a small orange wedge. I’ll post pictures later. For breakfast I had my regular mixed berried and spinach vanilla smoothie. In my lunch box for work I have: a cheese free cobb salad with vinegarette dressing. Here is my favorite vinegarette recipe but because I’m doing a mold protocol I sub Apple Cider Vinegar(most of it anyway, I love balsamic vinegar and it’s hard for me to give it up completely) for the Balsamic Vinegar and omit the honey for now. For snacks I have salted almonds, cucumber wedges and half a green apple.
You wonder how I do it? Prep! Yes I spend a few hours every Monday(last day of my weekend) prepping food for the week. If I’m eating fish that week, I pre make the tarter sauce and keep on the coldest shelf in the fridge so it stays as fresh as possible. This past Monday I baked the chicken breasts for the salad (raw, trimmed chicken breast brushed with Dijon Mustard, Olive Oil, and salt and pepper),cooked bacon, boiled eggs, and made vinaigrette dressing. I have a few other very easy go-to meals that I can throw together easily during a busy week. It drives me crazy when people say they don’t have time or energy or money to eat healthy…other than my friends online, I seriously only know two people who lack as much energy as I do or have even less than I do and they both have MS. Sometimes I’m practically in the kitchen with my eyes closed because I know if I don’t cook for myself then there won’t be anything for me to eat at all and I will, either one of three things: either get hungry, spend too much money on paleo friendly fast food, or eat something I shouldn’t. That’s why it’s important to evaluate your energy for the week and plan your meals in accordance with how many spoons you have and how many spoons you think you will have. How do you do that you ask?
Here’s some examples of good questions to ask yourself when planning your week:
- What’s going on with your hormones this coming week?
- Do you have deadlines to meet at work?
- Do you have plans with friends or family?
- What do your kids have scheduled this week?
- Any changes with medications this week or doctors appointments?
For me, it’s a life confined to a bed or having my own place, having relationships, keeping a job, having my own life! I wouldn’t be able to function without my diet and homelessness or being a complete shut in is not an option for me! That’s my whole point in starting this blog is that I truly hope I can inspire and help others to eat healthy, to take care of themselves, and get well! In the beginning it is hard to find the energy but after a while you will start feeling better and it won’t be as challenging. Your diagnosis doesn’t have to be a life sentence, it doesn’t have to be the end. It is merely a marker and a tool used to tell you what’s going on in your body and how to fix it!
“Hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re doing something.“ – Neil Gaiman