Goals

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I had lofty intentions for this blog, but it seems to have devolved lately into a daily diary of my exploits. I could have said pain – but that’s just melodramatic. 😄 it’s kind of true, though.  I really do document my day to day pain at this point. I am in Survival mode, essentially.

…I started writing several hours ago. I’ve been distracted, had a nap, fielded a call from my daughter’s art teacher, (she suffers from anxiety, and has had spotty attendance this past month. He was concerned, understands, thinks she’s awesome. She endeavoured to turn in an assignment today, even though she was struggling).

As I was saying, I feel like I’m still in survival mode. I’ve had to shed most of my activities not actively related to living. This morning I felt as if I had taken a step out of the ooze. It’s great when I can add things back, like playing with makeup. Geez. Putting on makeup is something most people take for granted. For me, playing can take two or three hours for a simple face. A face most people would put on for date night. It takes me so long because I rest between steps, lie down, have to stretch.

I had to tell my mom I needed some space for a bit. I feel so responsible to her, but if I don’t get to her for a bit (Dad too, of course) I feel guilty, but I need to strip my life for a bit again. Just the basics. Making sure I get enough sleep, eating properly, taking my medicine and vitamins, bathing – which can be tough. I need to be for my family right now.

It looks like my husband needs to go for more consultation on his eye. He went to the doctor on Saturday, and the pressure was up in his left eye. The doctor wants him to see another specialist. Soon. I’m concerned. He was prescribed more drops, fully researched, for the one eye. Within two days his eye was red and angry again.

It’s kind of stressful over here. I suppose I shouldn’t be surprised if I am feeling exhausted and out of sorts. I’m trying to be responsive to and supportive of my friends, but it’s rather like I’m a flailing drunk trying to make sense of it all. My head pain has increased again, which isn’t too surprising, since I haven’t been looking after myself.

Going forward, I pledge to be gentler to myself. I will practice good self-care and remember I cannot be my best self if I am out of sorts.

My family needs me.

Besides, what ever turns out the way we expect it to, anyway?

Thanks for being here, Zebra friends! 😘

Doubt, Pain and Uncertainty

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Yesterday went slightly better for me. Strange, because we started the day with the lower THC marijuana, so I had lower pain relief, and I was hurting slightly more. I wonder if I take better care of myself on these days? Something to think about. I made sure I took in proper nutrition, and had some crackers my husband had bought over the weekend with some cheese, and I felt less tired. Hey, now! If I can time this right, perhaps I can work around the nausea and try to have some better food and thus, better energy. I’m pretty good at timing my vitamins now. One thing at a time.

I had a chance to play with a new makeup collection – the Urban Decay x Basquiat Collection – and had a blast. I didn’t make too much of a mess. I was so pleased! I played with new lights, and was happily able to take care of some personal grooming such as shaving my legs, applying a face mask, and I was going to settle down to write a few words for this blog when… okay, I fell asleep. I thought it was just going to be a small two-hour nap, just until my husband came home. It was four o’clock, after all.

Eight o’clock and chicken tortillas in my face indicated this was not to be. I was in quite a lot of pain as well. My abdomen is really bothering me, as is my neck, although it’s eased some. I’m coping. I mean, derangedly, but I’m coping. I have huge acne sores. I’m stressed all to hell, but I’m coping. I just don’t know what else to do except put on makeup because it’s fun, take photos, because that was a lot of work, and the photos are fun, too. Distraction.

I’ve cut my Beauty Blog to three days per week, Monday, Wednesday and Friday now through the month of May. It’s heartbreaking, because it’s so much fun, but I had to give something up. Nobody would take my kids 😃 Likely because I didn’t offer them. My daughter is struggling a bit with her Autism and anxiety. Mama to the rescue! Poor kid. When Dad has Autism as well, it’s difficult because he wants to help, but he isn’t very adept at relating interpersonally. His approach is completely logical. Not necessarily what one needs in the moment. Fortunately he relates well to the hyper-logical boy.

Off to play for a bit!

Stay stripey, my Zebra loves! 😘

Update: Monday Evening

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Well, that didn’t go as planned. I decided to lie down at 1:00 and begged my husband to wake me up at 5:00, so I could soak in the tub. He remembered as he woke me up at 7:00. Oh, well.

I am feeling slightly better, but the back of my head is hurting, which means likely means more snow on the way. I think I need to take it really easy this week. Whatever is going on is serious, I need pampering.

I could be getting the flu. I do get very emotional whenever I get physically ill with a virus.

I don’t think people realize how hard I work to be interesting and cheerful. It’s actually a lot of work. I spend at least two to three hours a day reading articles so I have interesting things to talk about. I think that needs to stop for a bit.

I’m going to ensure I’m up on my vitamins. Two people have mentioned vitamin D in the past week, that can’t be a coincidence.

Cutting back on my sugar again. I’m starting to mindlessly eat again. Mostly when I’m trying to keep myself awake. I should just let myself sleep and just be done with it.

So, I’m still pretty grouchy, but I’m not as dark as I was. Does this mean I’m a shade of grey? 😜 Ew.

 Beighton the best you can be!, my zebras! 😘

Microaggressions and Ehlers-Danlos Syndrome

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What are microaggressions? They are those questions, statements and comments, that might not be too annoying if they happened once, maybe twice. Unfortunately, they seem to happen often. These are the ones that seem to happen most to me. I’d love to hear yours!

When I’m well enough to travel on my own,  I often travel by cab. I’ll explain more on this in another post. Nearly every time I step into the cab, the question after,”Where to, Miss?” is nearly always,”Were you in a car accident?”! Of course, I was not in a car accident, I used to explain that I have a chronic pain condition. For a while I told them I had Ehlers-Danlos Syndrome, you can guess how well that went over! No one had heard of it, of course. So now I just say either I have a connective tissue disorder, or should genetic condition. That usually gets me through.

The next thing that comes up is always medical advice. So many cab drivers have pain, I get it. They know. They have great advice. I have learned so much wisdom from these men and women. But so help me, if one more gives me an exercise plan to follow, I just might scream! It always starts with a You know you just have to… However, I will be working with a very qualified physiotherapist when I am well enough to get there on a regular basis, and his assessment last time I saw him was he couldn’t make me stronger, there would be no ‘working out’ but I needed to work on my prioception (sense of self in space) and stamina, and he can help with that. Taking advice from someone unlicensed whom I don’t even know, would not only be dangerous,  it would be irresponsible.

Vitamins and herbs are what comes next, always! I haven’t been bothered by this one too often, but hoo, boy! When it happens! I take some vitamins for overall health. A multivitamin, because EDSers notoriously do not absorb vitamins and minerals very images-2-1. I take Flaxseed and Vitamin E for dry skin, and general benefit, and I take dried cranberry because my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having trouble with for the year prior. They went away, and it’s not expensive, so, okay! Obviously,  I’m not completely opposed. But when someone says it’s going to ‘cure’ me? Or I have to take hundreds of dollars worth? Then I have a problem.  One time I had hailed as cab, it was at night, the driver had given me a sales pitch, I had demurred, but we were about three blocks from my house, it’s all residential now. Remember I can barely walk, it’s cold, it’s going to be tough for me go get another cab if I stop this ride. He shoves the phone at me. He had been talking to someone in another language.  It turns out it’s some guy who is trying to set me up with a monthly recurring supply of vitamins and wants my credit card number! Yikes! I couldn’t say I didn’t have one, as I needed to pay with it. Good thing my husband was waiting up for me and noticed it was taking too long for me to get out of the cab, and came outside to help. They backed off when they saw him. He’s tall at 6’5″ but not hugely imposing. You bet I complained!

The next one I don’t get so often anymore. Pity. That’s: “You’re too young to use a cane!”. I’m sure I look younger than I am because I’ve been cooped up in my bedroom for years and haven’t been in the sun. A stellar argument for sunscreen if I’ve ever heard one! But I’m sure people mean I’m not 80 yet. I sure feel 80, although that’s pretty ageist because how is 80 supposed to feel? Is that old? I know people who have been old sticks in the mud at 20 and people who have the flutter of youth into their senior years. It’s all mindset. I don’t see what a mobility aid has to do with it, I’m just trying not to fall down.

The one I hate the most is,”You’re so lucky your husband hasn’t left you!”! And if I’m extra good they tack on: “yet!”! Isn’t that lovely? I love people. I know they mean this in a sincere manner. There are so many stories of people getting ill and having a spouse not being able to cope. It’s tragic. My husband is exceptional as a human being, whether I was ill or not, and you know, I wasn’t totally healthy when we got together! *GASP* I KNOW! It’s okay! Do you need to sit down? This might be shocking. Ready? He seems to like me for me. Yes. Not for what I can do for him. We’re a partnership, a family. Weird, right? I get it. We’ve actually talked about splitting up. I’ve had some really bad days and encouraged him to run for the hills. He realizes he would have sole custody of the kids. He is not going anywhere. 😃

My favourite, “You should probably lose some weight.”! I’ve heard this from so many doctors. How do they think I got fat in the first place? If I could move, I would be exercising, walking, moving! It’s not like I’ve always been fat, as a teen I had anorexia and was scarily underweight. (I still have anorexia, I am in recovery). It starts with the medication. Every single one puts weight on, it seems. Then motility issues, and then add in I’m pooping every 3 weeks. I finally started with MyFitnessPal to see how much I was actually overeating, and I was averaging 900 kcal a day. Not good. Not one of those doctors offered any solutions beyond the order of ‘lose weight’. I finally asked one doctor why? And she said it might help relieve the pressure on your joints so you will feel better. I asked the next doctor about this theory and he laughed. He asked me if I felt better when I was thinner. I said no, not really. It didn’t seem to make much difference.  He said, “don’t bother, then, you have enough on your plate!”. I sometimes suspect doctors offer this when they don’t have any other solution. That way, the onus is still on you to perform. It sure beats the therapist I had who interrupted a tearful story of mine to ask if I’d ever considered gastric bypass surgery.  I was 275 lbs. I hit 300 lbs in 2015, unfortunately.  I felt awful. I started again with MyFitnessPal, made sure I had enough food at 1600 kcals and my weight started to drop. 40 lbs in 2015. Got sick in 2016 and lost 60 more. Just weighed myself for the first time since Christmas.  I have been eating a lot more because I haven’t been as nauseated, so I suspected a gain of 15 lbs, I was hoping not more than 20! I lost 2! I’m so shocked! I’m now 206. I still want to lose 30 more as I’ve mentioned,  but I’m not desperate to do so, in case I get sick again like I did last year when I lost 40 lbs in 3 weeks. I’m 5’8″. Sorry for the tangent, anorexia takes over sometimes. Give me any point in my history,  basically,  and I can tell you what I weighed.

The woman at the eye doctor who won’t let me sit down. She is a lovely lady, but every time I walk in she stands between me and the seats and wants to chat. She won’t let me sit down no matter how many times the first thing I say to her is, “I need to sit down right now, my back is killing me!”! Sigh.

The most fun I have is with the people who I chat with at doctor’s offices and labs and goings who ask what is wrong with you. I’ve had both very wonderful and very weird conversations with people. The best was the woman who asked what was wrong with me, and I told her I had something called Ehlers-Danlos Danlos Syndrome,  it is a problem with my collagen and connective tissue. “Oh, I have that!” She says. She was older than I am and didn’t seem to be in much pain so I was curious. We chatted for a while, I come to find out the silent she is referring to is high cholesterol! But it’s really similar, in some ways…?

Hope you’re having a great day! If you like it, please give me a like, comment, or help me improve! 😍

Medical Treatment

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Of course, I’m not just lying in bed in pain. I’m working with doctors trying to get me to the point where I’m stable. Since we’ve been chasing ‘stable’ for 15 years, it’s quite elusive. We are defining stable as a long-term situation where I’m able to do many of the things I want to do, such as socialize two or three times a week, sit downstairs with my family on a regular basis, and not be in incredible pain when I’m at rest. Also, being intimate with my husband would be nice.

Medication

When I was first established to have a chronic pain condition, I was put on opioids. One of the features common in EDSers is they often process medications quickly. I am one. So this 4 hour medication was processed in 3 hours for me. I needed to take it 4 times per day. What I didn’t find out until years later, in speaking with a therapist, I was likely going through a mini withdrawal every three hours. The pain was better, but I developed an awful online shopping habit in order to cope. I didn’t go into huge debt or anything, but it could have been better spent.

I’m now on a cocktail of medications that work very well. I won’t go into specifics, because that’s so individual, and my husband is my main pill manager, so I probably couldn’t even tell you if I wanted to! Included are an antidepressant, known to help treat chronic pain, a longer acting opioid, I have sleeping pills to use in an emergency, and have Marijuana based pills. I have cut down my opioid intake to a third of what I was taking in the beginning, and always look to cutting it down further.

Marijuana

I take three forms of Marijuana. I’m sorry to report it isn’t as fun as it seems. I take the pill form, and of course I don’t remember the name right now. I take the oils at night. My supplier uses olive oil, so it tastes like salad dressing made with paint chips. It doesn’t linger, though. I also vape in the morning.  I vape a high CBD low THC blend, so it’s closer to the stuff they give to the kids with seizures.  Closer, but not exactly. It has a little more THC, which I find helps the pain, but it’s not enough to make me stupid. None of this medication makes me “high” or “stupid” which is nice. The only time I’m out of it is when I’m in pain.

Eating Plan

I have had a horrible year with my stomach, but over the past two years, I’ve managed to lose 100 lbs. Part of it is because I’ve been sick and had terrible stomach pain. Based on this, my gastroenterologist suggested I try a FODMAP diet plan to deal with the stomach pain. This plan isn’t cute. I didn’t believe it would work,  either. I’ve tried eating plans for endometriosis before, no luck. But this was for a month, Andrew was going to help, it wasn’t THAT different from my eating now, and my stomach really hurt…. so FODMAP entails:

  • Gluten-free
  • Lactose free
  • No garlic
  • No onions
  • No glucose fructose
  • Low fruit

The Gluten-free is because of the sugars involved, the sugars produced are off limits. And because I’m low motility, little fibre, few vegetables because of allergies. I am working with a nutritionist,  because this does look kind of bleak.

After the first month I was amazed. I felt so much better. My joints felt better. I had significantly less pain than before. Even in my fingers! I have since spoken with others who have had similar success. I need to meet with the nutritionist to see if there’s stuff I can add back. I was feeling so good, I didnt mind. I was naughty over Christmas and am paying for it. As predicted, my stomach still hurts, but the rest is not bad.  Except my back…

Botox Injections

For ten years, I’ve been getting 400 iu of Botox every ten months in my torso and thighs. I’ve been also getting it in my head for migraines for about a year, 200 iu. It has been injected various times at the Wasser Pain Clinic at Mt. Sinai in Toronto, Canada. The torso injections are known as trigger point injections, as the doctor feels around your body, and when he or she hits a tender spot, you scream, and they mark, then inject that spot. You receive about 4 injections per needle, for about 50 to 60 injections. The Botox is mixed with lidocaine,  for some immediate relief. Unfortunately, as was predicted, my back hasn’t been taking well to the last two injections, and they may not work for me much longer. I see much doctor in ten days, we shall discuss.
A couple of things about this treatment, my physiotherapist is from England and has said this treatment has not proven effective for them there. I do not know how effective it is here, either, I know it worked for me…I could be a freak. At my last visit, my doctor mentioned he couldn’t start this treatment on someone now, that no insurance would accept it.

Therapy

Doctors seem to really like to know I’m in therapy, because then they don’t have to be responsible for my ‘depression’ if I cry. I really don’t understand why so many doctors will seem surprised and uncomfortable if you shed a couple of tears when they say something really quite upsetting to you. For example, my gastroenterologist looked positively shocked tears slid down my face when he said “You’re don’t really have much of a life, do you?” We’ll, not when I’ve been desperately I’ll for the past six months, lost 40 lbs in the last 3 weeks and am tired and scared. Based on these tears he pronounced me, “Profoundly depressed,” and dismissed me. I certainly have situational depression, which is being depressed about your situation, but I’m working on it as best I can. Trying to be positive.

Braces

When I go to bed, I can be braced head to toe if I want! I have ankle braces, knee braces, wrist braces, finger braces, arm splints, a mouth guard, my CPAP machine, and my satin lined caps to protect my curls. I promise you, I look ravishing!

Vitamins

I don’t necessarily believe in so-called vitamin therapy, but I do take a series of vitamins. I take potassium, known as vitamin k, to help with some of the deficiencies that occur, based on my medication profile. I spoke to my pharmacist for this advice.i take vitamin E to help with dryness. The same reason I take flaxseed, general nutrition, and because I’m on so much medication that causes drying, it’s helping somewhat. My eye doctor even commented it’s likely helping! I take melatonin to help me stay asleep at night. I found there’s only one brand and style that helps. I take a multivitamin and vitamin D supplements, because those with EDS often have poor nutrient absorption. I take them rather haphazardly, so I don’t have too many nutrients. I had a high B12 count over the summer, am trying to watch this count, not exacerbate it. I also take a cranberry juice pill. My husband claims my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having. I wasn’t so sure, but they aren’t expensive,  and I’ve not had a problem since I’ve started, except for some slight problems under my bust during the summer (totally expected, not as bad as previous summers)

So that’s basically what I’m doing at the moment. When I’m feeling a bit better, I will add more to my agenda. Pretty soon I will let you know what I’ve tried! 😀

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