Some of the worst symptoms in the last month have been battling my mind and the feeling of hopelessness. I'm feeling very down and unmotivated to keep fighting. I'm so tired and the brain fog can get so severe some days. It's just been a very long journey and while I'm making progress, it is slow. I am still suffering from a long list of awful symptoms and the frequent setbacks are so discouraging.
My sweet Mom bought me this shirt. Hope + for Hope More. It was from a Lyme fundraiser, but she also bought it for me because it has some sentimental meaning behind it as the name Nadine means Hope. I don't always feel very hopeful, this is a reminder.
I'm loosing a ton of hair. I pull out handfuls a day. Not the prettiest picture, I know. But it's borderline traumatizing and when I see handfuls come out like this a couple times a day it makes me want to cry. It's not like I can just forget about it either as it is a constant reminder every time I run my hand through my hair. I don't want to cut my hair... but if this keeps up it's going to get very thin and not look nice long :( I'm already twisting my pony tail around an extra time just so my hair stays up.
It could be a side effect of one of the meds I'm on and what I first suspected, but both my lyme doctor and naturopath doctor did not believe this was the only cause so sent me for more blood work. I just had bloodwork done in the beginning of March at HSC and my hemoglobin, ferritin and thyroid hormones were ok (actually hemoglobin and iron were the best they've been in a while!) so I knew my family doctor would not order new ones for me yet so I had to pay for it myself. Over the past two years blood work rarely reflected my symptoms so I wasn't very excited about this.
The results did give us a few answers. This round showed that my thyroid is struggling now and Dr C said that definitely causes symptoms of hair loss, feeling very down, extra tired, more brain fog etc. For those who know more about the thyroid and are wondering the T4 is having trouble converting into T3 so my T3 is low and needs a hormone replacement to support that. My hemoglobin is bottom end of normal again and my ferritin (iron stores) are in the second last category so I am iron deficient anemic again too. I struggle with this off and on but beginning of March they were finally going up and were the highest they've been in a long time. We're thinking it was the flu I had at the end of March that pushed me back down. Even though I've been taking a high dose of iron twice a day since it's just not going back up now.
I am also starting an adrenal hormone replacement as well, I talked about this possibility after my first appointment with Dr. C in January of this year. I have given all the natural approaches a good shot and I am still experiencing many symptoms of adrenal fatigue so it's time to try something stronger. Chronic illness and especially treatment for Lyme can be very taxing on your hormones so it isn't too surprising that my adrenals and thyroid are struggling. When these struggle it can be hard on all the rest of your hormones and makes it harder for the iron to go up too so hopefully these new hormone replacements help balance everything out.
I sometimes get asked about how everything works with my Lyme doctor being in BC. I have phone appointments with him every four to six weeks and he phones in my prescriptions to a pharmacy there and they ship them to me. I have had a great experience so far with this set up and the pharmacy I go through there has been excellent and so helpful. They know my doctor well and have always done a great job answering my questions even when they are Lyme related. It's not the same as having medical care here but I am grateful I at least have this care and am able to get the medications I need. I try not to dwell on it too much, but I do feel a sense of loss and even bitterness when I hear of others who have such excellent care from not only one but sometimes an entire team of doctors for their health struggles, all covered by public health insurance. I'm confident things will change for the better for Lyme patients in the future, but for now I just have to keep doing the best I can.
Twice a day counting out my antimicrobial tinctures and meds... 80 drops, 60 drops, 60 drops, 60 drops and a pill when I'm pulsing the anti-protozoan (it's similar to an antibiotic).
My weekly IVs stopped for six weeks around June as my naturopath doctor was away. It was a good test to see how much they are helping as they are time consuming and expensive. Things went ok at the beginning but by the last stretch my pain levels started to climb back up again. Because I did ok for the first stretch we decided to cut down to one bag a week and alternate vitamin C and glutathione instead of doing both each week. We started with vitamin C last week and only getting that with no glutathione gave me a pretty bad herxheimer reaction and my pain levels jumped up to an 8 out of 10 and it was awful! This week I had glutathione and the next day pain was down to a 3 out of 10. Such relief, there are no words. Glutathione is a mega detoxer so it makes perfect sense that the exacerbated symptoms last week were caused by too much die off from the vitamin C and not enough detoxing after. To help my body on the weeks I get only vitamin C I'll have to be very diligent with detoxing at home and doing more caster oil packs on my liver.
Last Friday was one of my high pain days and I was going crazy so I decided to push through and get out of the house anyways and try distract myself so we went to the BDI for a treat (well they had a treat, I shouldn't eat dairy or sugar). I felt very distracted because it's hard to push through the pain, especially knowing I'm probably making it worse by doing so but I NEEDED to get out and spend some family time together. Standing in line for the icecream was brutal for me but walking slow was ok, I made it over the bridge and back!
On Saturday the pain was going down a bit but still high enough that I felt it necessary I just do something so we went to Kildonan pool. Packing up was way too much and I know it set me back some (even though I had a lot of help) but once we were at the pool I did ok... I could just sit and relax and found that swimming helped with the pain quite a bit, something about being fully supported by the water maybe? No pictures of Lucas and Kyle because I don't think they were out of the pool for even five minutes!
I came across a saying recently that I think is so true: Anyone can fake being sick but it takes great strength to fake being well and smile when you feel terrible. ...and that strength is not my own but comes from God.
Just because I'm out and smiling does not mean I am not smiling through some intense pain. I heard Kyle talking to someone about this once and he said something like "if you want to know what it's really like for Nadine you have to spend at least a full day or two with her. She can push through and smile through the pain for a while, but sooner or later it catches up to her and she just can't anymore, and no matter who she's around she has to let those walls fall down and THEN you see the reality. She can only push through so long."
