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Ever wonder what it’s like trying to get into shape with a condition like Ehlers Danlos?

You put on a workout video. They have 2 types of people in the background- the ones doing the main moves and the ones doing the modifications for people who are new to working out or have various limitations.

You try the limitations. You start to feel and hear your shoulder or knee pop. Then you modify the modifications because you remmeber last time you did a major workout and threw your knee so badly out it took several hours for it to pop back in- by that time, you were in the waiting room at the ER because this time you couldn’t walk nor put pressure on your leg and it took your dad on one side and your husband on the other side to help you hobble out of the house and into the car, every pot hole and bump in the road sent a searing pain through your knee and you were crying- until it “magically” popped back into place and the pain was gone.

Most of the time, if you threw a joint out, it would pop right back in so that time stood out in your mind because of the pain. After that, you were nervous about working out again so you would do it sporadically.

Your history of c sections combined with diagnosis of Hashimotos mixed and you knew you needed to workout. When you met with the genetic specialist who gave you the EDS diagnosis, you asked her. She told you water aerobics and swimming- stuff easy on the joints but you have no access to a pool so you got stuck. That put you back on square one and back to the risky exercises.

I’m down 50lbs but about 20 was from being hyperthyroid right after my daughter was born. I went down from 220 to about 180, back up to 190 then from 190 to 170ish after getting my thyroid regulated post surgery and switching to the gluten/dairy free lifestyle. Now, I’m about 30 away so I need more than changing my diet. I prefer the Stronger workouts (livestrong) but I have to do the modifications and sit out from certain exercises- it still works pretty well since they are laid out.

 

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I’m so sick of feeling sick

Almost every day I feel run down.

No matter how much sleep I get, I can’t seem to feel rested. I feel drained all the time, my brain is so foggy I have officially quit joking about being an air head.

My mood swings from depressed to anxious- every time I start to think I have some mental illness, my labs come back.

The depression is deeper than I ever felt- as an outcast teenager, when I lost my grandma, lost my dog or lost my child- I had situational depression all those times- never this deep. This depression is unrelenting and feels like I’ll never be able to get up. It makes me feel like no one cares, that I have no one- my kids would be better off and so would my husband and my parents- it makes me feel like I just need to isolate myself. Every time I start to ask my doctor for help- I get my lab results.

I feel nauseated, my stomach bloats out, I have to run back and forth to the bathroom- or I get the opposite.

My palms start burning to the point I can feel the heat radiate, or the opposite and even at 90 degrees, I’m shivering.No amount of blankets can help me warm up and no stripping of layers helps me cool. Heat is worse- it makes me overheat to the point I’ll start to feel like i have heat exhaustion. I have got heat sick just from hot flashes.

 

I don’t know what’s worse- the crying spells from the depression, the panic attacks from the anxiety that come on with 0 warning, the fatigue that NOTHING helps, the digestive symptoms, mood swings or the fact that people look at me like I’m faking it all. The fact that it’s an invisible illness that makes me feel all this.

It’s never going to go away but you can’t see it. You don’t see my mood swings- until the symptoms get severe- I’ve been learning to hide them.

You don’t see the cold or hot flashes- unless I start sweating

You don’t see the depression, anxiety or the nausea but it’s there. It’s real and I’m ready to give it up. I don’t want Hashimotos anymore. I don’t want to keep having to feel this way in between dosage adjustments. They started me at 25, I’m now up to 88 and my appointment is next week- I’m in full swing and can tell my levels are off. I was going to go to the ER, but there is no use- ERs can’t handle chronic- they treat temporary problems. I really wish I could figure out how to deal while I’m in between doses because this isn’t living.

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Just went in for my thyroid ultrasound and follow up

It was my first ultrasound since my surgery 2 years ago.

I found out the cysts on my right side (only side I have left) haven’t grown, so I don’t need to have another scan for about 2 years but I had my lab work done and they had to up my dose.

It seems every 3 months, I go hypo but this time I didn’t get such extreme symptoms.

I have been really tired and a little grumpy but I figured it was stress and the hours I’ve been working. Starting my days around 6am and ending around 11pm tends to wear anyone down over time and it’s my normal.

I also have been slowly gaining weight, after losing 20lbs, I’m up 9 and I’m not eating any different (I’ve been gluten free since July of last year, stopped November and December and restarted in January and have been strict since)

I have been waiting for the “right” time to go fully dairy free as well, that will help bloating but I can’t explain the weight gain and weight loss- both happen with me not doing anything different.

I guess when I’m in a bad mood, tired or even gain 1lb I can count that as my thyroid. I have started to notice that I only really have anxiety attacks when my thyroid is off so I guess that’s a good indicator and it helps me knowing that my anxiety seems to solely be linked to my thyroid. Maybe if they could get that under control, it will help that issue.

I usually have more extreme symptoms, but I guess since they caught me when I was slightly elevated as opposed to a major elevation, the symptoms didn’t have time to come on as bad.

Either way, you’d think after 2 years, they would have me straight by now… This is getting frustrating. I have gone from 25 to 50, 75 and now I’m at 88. I guess my next step will be 100.

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Living with Hashimotos

Imagine the most exhausted you ever felt. Maybe you stayed up all night cramming for a test in college, or a state board test after finishing nursing/beauty/etc school. Now, imagine feeling that way despite sleeping for 10-12 hours a night. No matter what, you can’t shake the fatigue. Now you’re noticing bald spots forming and your hair is getting noticibly thinner. Suddenly, putting your hair up in a ponytail isn’t an option- a ponytail is the size of a normal person’s pigtail.You’re dealing with fatigue and hair thinning- now you’re emotions are falling apart. You keep feeling anger build up over nothing- now you’re crying because your dog barked wrong and you think he’s mad at you. You’re crying at the drop of a dime, your hair is falling out and you’re always tired. You think it must be that time of the month but just to be safe, you go to the doctor. They poke around and find a lump in your neck so they send you for a biopsy. The biopsy comes back negative for cancer, but an ultrasound shows it’s a cyst. You’re anxiety flares and you suddenly can’t sleep, you’re always cold and always shaky. You go for further tests only to find out it’s a large cyst inside your thyroid that is causing your thyroid to over produce TSH and it’s making you hyper- but at times it’s making you hypo. You set up your surgery to have the cyst removed and in that time are put on heart medication and two weeks before the surgery, you’re put on medication to kill your thyroid function- because having the surgery while hyper could throw you into a thyroid storm- where you go severely hyper and if it’s treated can lead to you dying.

By this time, you feel like a wreck, your life is a mess and you’re doing your best to hold everything together so it doesn’t cost you your job, family, life or anything else. You figure the surgery will fix everything.

You go in for the surgery and it’s an easy recovery and you’re quickly back at work. One day you wake up in a bad mood. After not shaking it, you just start crying for no reason then you’re shaky, hot, cold, hot, something sets you off so you start screaming and then fall into such a deep depression you start wondering if you should even be alive. That’s the point you decide to get help- they test your thyroid after finding out you have Hashimoto’s and thyroid surgery- sure enough, your TSH is off. They put you on medication and it works- you’re back to normal. That normal feels so good you forget everything else- until just a few months later, you’re right back to bad.

Keep going through that cycle- every few months, your thyroid is thrown off and they have to readjust your medication and that describes me for the past two years- just when I go back to normal, I get thrown off.

For me, it started with a positive pregnancy test. I set up the appointment to get my pregnancy confirmed with my OB and his nurse checked my neck. She found a lump so he sent me for a scan. The scan came back showing I had a nodule inside my thyroid so I had to have a biopsy- that came back inconclusive but the panic attack I had during the test (huge needle going at my neck) possibly changed his mind about redoing the test. I had to wait until the end of my pregnancy to be put on anything more than a heart medication to slow the palpatations down. In that time, my thyroid went from high to fine and back to hyper. I was dealing with severe (almost disabling) anxiety followed by severe depression swings. They held off on my surgery because I was breast feeding and they didn’t want to have to keep me from nursing for a little time. When my baby was around four months, we decided on the time of the surgery. I started a new job that had me working nine hour shifts and required one month notice for days I needed off. I naturally dried up working such long shifts (I was afraid of asking to pump but did manage to go home during some of my lunch breaks to nurse). One day, I got a reminder of an appointment with the man who was going to do my surgery so I figured I was going to get my appointment date and set up for surgery. When I was in the room during my appointment, the nurse came in and asked how I was feeling, then asked how I had been after my surgery. I told her I hadn’t had the surgery yet- I thought that appointment was to set up my surgery.

That day, I set up the surgery and a month later, I took a week off work to have it done. They put me on Levothyroxine 25mgs. At first, the 25 was fine but soon I went back to depression and anxiety swings. I ended up going to the ER, I was feeling so bad and they tested my thyroid- once again, I was hypo so they upped me to 50. I was fine for a bit, then one day at work, I was standing when I suddenly got really light headed. I tried to shake it off since I normally feel that way. My hearing faded- everything felt like it was distant, everything was getting dark and I developed tunnel vision. Suddenly, I felt a pain in the left side of my chest followed by my left arm going numb. I started feeling like someone set my left side on fire- it was so bad, I was sweating and in pain from the heat. My right side went cold- like, frozen cold. I was sweating profusely and so cold it was painful. By that time, I was slurring and had my husband come to pick me up. At the ER, they checked my heart rate for 10 seconds and told me it was an anxiety attack. They did check my thyroid levels, which once again, came back hypo. My thyroid was the only thing that came back bad and my doctor upped me to 75 (what I’ve been on for a year now)

I was told that episode sounded like a blood sugar seizure, and I’m no stranger to those symptoms when I need to eat but I know it wasn’t an anxiety attack. I was told that several months ago (and nearly a year after it happened and was dismissed by the ER staff, so they couldn’t test and confirm it)

It took them about 1-2 years to get my dose right for longer than 2-3 months, but lately my tests have been coming back in the normal range.

Hashimotos Thyroiditis is one of two autoimmune thyroid diseases, also the most common cause of Hypothyroid disease. Hypothyroidism is when your body produces too little of the thyroid stimulating hormone (TSH). It’s caused by an immune attack on your thyroid and the only way it will go away is either having your full thyroid (I only had half) removed or when it completely destroys your thyroid leaving it “nothing but a lump of scar tissue” (as per my thyroid surgeon).

It causes fatigue, depression (and anxiety- despite what some professionals say), it will cause fluxuations in your thyroid that go from hyper to hypo before you get stuck on hypo because it’s done so much damage, your thyroid can’t function properly. It causes hair loss, dry skin, constantly feeling cold, weight gain and difficulty losing weight. It also can throw people into early menopause. It can hurt fertility and unregulated, can cause thyroid issues if you’re pregnant.

It’s genetic, so if you have it (or any autoimmune disease) your kids are at higher risk of developing autoimmunity. It’s fairly commonly co-morbid with Celiac (you have over 50% likelihood of developing Celiac with Hashimotos and vice versa). It’s recommended to try the Autoimmune Paleo for 1-3 months, then add things back to see if any of those foods help or hurt- I haven’t tried that diet, but I have done elimination with gluten and dairy- both are problems for me personally so they’re both almost fully out of my diet (very low dairy and gluten free)

It can take you from healthy to severely sick until you get the diagnosis fairly quickly. My progression has been over the course of two years. My hair used to be normal but course. Now it dries like straw and if I move it, you can see my scalp. If I pull it back, it’s the same thickness as half a normal pigtail. I’m always tired. I have 2 kids, an Etsy shop (really, two shops) and a day job in retail- so some fatigue is normal, but there are times I’m useless after I get home from work. There are other times, I’m great but it’s taken them two years to get a dose high enough for me to function and I changed my diet. I’m currently eating gluten free, I’m weeding out dairy and am wanting to switch to a full Paleo diet since it’s recommended.

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EDS, post 30 can your body bounce back?

I know your metabolism takes a slight hit at 30, larger hit at 35 and every 5 years or so keeps shrinking. I’m still heavier than I was pre-kids and reality is hitting me. I knew I no longer had my pre-baby body, but will I be able to go back?

I accepted the fact that pregnancy made my hips more of a problem area than they already were. I only wore a larger size (11-13 in high school) for that reason, but had an hourglass figure. When I dropped to a 14, I tried on some 17s and couldn’t get them past my hips. That was when I read that juniors and adult sizes are made different (1,3,5, etc are juniors. 2,4,6, etc are adult). Juniors are made narrow in the hips where adult jeans are made wider in the hips.

I do know that with Ehlers Danlos, collagen is affected and where it makes your skin stretchy, it seems it may be harder to just bounce back. My scars fade but they still look strange when they heal. I don’t know much else about EDS but I do have an appointment, not only with a genetic specialist, but a specialist who lives with EDS herself. But that’s in a little bit. Right now, I’ve been researching trying to find foods that can help, workouts good enough to help lose weight and tone up but also safe for Osteo and loose joints and anything else that could help me with shrinking back down.

In the past 2 years, I’m down from 220 to about 170. I’m down from a size 20 to a size 14-16. I still have 40lbs left and hoping to get down to a 6ish or 8, maybe and I have 5 years in my mind to do it. If I can get down to my goal, fix what I need to fix diet wise and perfect my ingredient reading I should be able to maintain despite my Hashimotos. I’m seeing that even thyroid isn’t as much of an excuse as people use it. I dropped 20lbs in 4 months on a good dose of thyroid medication and cutting 1 ingredient out. I’m almost 1 month back to the normal (gluten free) lifestyle and finally feeling back to how I was feeling. I just had my thyroid levels tested again and they were perfect.

Right now, I’m trying to buy less processed foods. I have quit drinking Mello Yello (but I did switch to Diet coke for the time being), I’m eating 1 grain meal a day (if that) and the rest are cooked or salad. I do need to cut condiments and I still am drinking my Starbucks double shots (1 a day), I also started to notice my sugar drops when I eat potatoes so I’m switching to sweet potatoes.

The problem is when you have multiple diagnosis’s with several recomendations for diets. Where I have obvious issues with gluten, gluten free is needed (unless I want to spend all day cramping and in the bathroom), I had the diabetic low glycemic diet recommended to me for the reactive hypoglycemia. Cutting everything that was recommended to me feels restrictive. It also makes my OCD mind feel like I’ll be depriving myself and feels like it’s a black/white situation instead of- eat this way and you’ll feel great, eat that way and feel like crap.

I’m working on disassociating food with pleasure or anything related to emotions and trying to associate it with fueling my body and nothing more. Mindfulness helps that. Taking time to savor what I eat and pay attention to it is what I’m working on. Salad tastes great, so does fruit. Sugar and snacks that are heavily processed taste like chemicals but are an addiction- I’ve read all about sugar addiction and cold turkey is the way to go with kicking it. I’ve been thinking about trying a 1 month sugar free diet to try to break it. Just not sure if I have the will power currently. I will start it at the beginning of a month this year, though. Just have to build up and do further research into it to go in armed instead of half assing it.

In my picture, I was 18. I was constantly working out but didn’t know half of what I know now. I was also healthy.

I wasn’t skinny, but I was a good 30lbs smaller than I am now.

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Day 2 gluten free

I cut gluten out of my diet again. This time, I’m better educated than the first time (I’ve done 3 elimination diets over the years- all three times for different amounts of time and all 3 times I had benefits that were noticeable). This time, I’m doing it after being suggested by multiple professionals and even told to act like I have Celiac and avoid it.

The problem with not being diagnosed by a blood test, but being professionally diagnosed as having Gluten Intolerance is what to say when I am at a restaurant. I cross contaminated myself once by picking salad around the croutons, getting crumbs and ending up running back and forth to the bathroom all morning the next morning. I have read more than one example of people being purposely contaminated by self righteous waiters who assumed they were following the trend and giving them regular food instead of gluten free food so what am I supposed to say when a waiter or cashier asks why I’m wanting the gluten free menu? Do I lie and say I have Celiac? From what my doctor told me, what I did (eliminate it and readd) that’s enough for him to prescribe a gluten free diet to his patients since he has dealt with so many false positive and false negative Celiac blood screens, he no longer uses the tests to confirm or deny the results.

I did find major benefits when I cut it in the past (over the summer from July to November) and reverted back in November and December. Because of the results I got when I cut it in the past (lost 20lbs in 3 months, got rid of my IBS morning diarrhea, was able to drink coffee again with no issues, had more energy, felt better, 0 arthritis flares- just to name a few differences) my doctor told me to ignore the negative Celiac panel and live like I have Celiac Disease since I do have autoimmune issues and gluten itself does play a role (I went on a processed gluten free diet- to avoid feeling better due to eating healthier foods- I ate a ton of gluten free pasta and didn’t cut dairy)

I guess when I get myself into the full swing again, I need to look at other things. I ate a lunch of baked fish (no breading), baked potato and mixed vegetables and my blood sugar dropped within an hour of eating. I have been told to eat sweet potatoes instead of white and to avoid white everything (flour, bread, sugar, etc) due to my reactive hypoglycemia. I’ve also been advised to stay on the low glycemic diet as well as cutting gluten (and not by medical professionals, but due to self testing and elimination diets- diary. I haven’t been tested, but I did find out I’m lactose intolerant as well)

I really wish I could gain the self control to go on the Autoimmune Paleo diet. It’s only 30-60 days and would probably help more than this random trial and error I’ve been doing.

On the other side, my healthy daughter (2 years old) has just had a stool sample taken in and has an order for a full GI panel as well as the Celiac panel. She’s had diarrhea and we have eliminated dairy for the past 2 weeks. We have tried giving her regular milk (got diarrhea again) then we tried giving her cheese and other dairy items- once again, got diarrhea again so it does appear dairy at least is an issue but since we’ve been dealing with more diarrhea from her than just the past 2 weeks (and a rash that comes with it) and our older daughter had a positive gene test for the Celiac gene, it takes around 2 years for an autoimmune disease to start showing, I guess it’s time to get her screened for the first time. Our older daughter has to have the screening on a regular basis and she probably will as well. Once I get the gluten free diet fully down for myself, I may start looking into talking to the pediatrician and testing both of my girls (closer monitored to make sure they don’t miss anything needed)

 

I truly don’t understand why people want to go on this as a diet just to “lose weight” or “fit in” with other people. It’s more expensive, more restrictive and a huge pain when everyone around you is having cake and you’re having to say “no.” I kept re introducing it as a way of trying to convince myself I had no actual symptoms from it so I could go back to eating normal foods- unfortunately, I couldn’t ignore the symptoms and felt sick 100% of the time (even a few times I didn’t realize I ate it). I’m no longer eliminating it as a trial and am now avoiding it and doing the research to “live like I have Celiac” since that’s what my doctor told me to do.

I do have to wonder if beauty and hair products also count- I have Eczema on my hands and face and Seborrheic Dermatitis on my scalp. I’ve started using sensitive skin cleanser (Dermalogica) and moisturizing facial masks for the past few weeks and I LOVE Hand Food from Ulta (hand lotion and scrub) for my dry hands (thanks to the cold weather, Hashimotos and Eczema- fun combo)

The Seborrheic Dermatitis has been an embarrassment for years. I’ve had it since I was a child and it looks like I have dandruff or worse- but it’s just dead skin cells. When people get close enough they can see it’s dead skin but I’ve had 2 managers tell me I needed to get rid of it. If it was that easy, it would have been gone years ago.

I use T-Gel daily and that keeps it from itching, unless I start sweating. I was told it was SD but I’m pretty sure it’s Eczema since I get Eczema outbreaks on my hands and face anyways.

 

My featured image is from when I was 24, a new mom and the toddler was my oldest- who’s now almost 7.

 

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One week left in 2017

I do resolutions yearly. It’s more of a list of things I’m wanting to do as a challenge to see if I can do them. I love trying to challenge myself on a daily basis. At work, I give myself private challenges, same with home. At times I’ll secretly compete with coworkers or at home I’ll even secretly compete with my husband. It all depends on what I am doing and how hard it seems to be- if it’s hard, a fun challenge makes it easier to do. I figure if I make larger lists, I’ll be more likely to find a way to succeed with some instead of failing at all. This list is what I’m hoping or needing to change over the course of the next year or so. I do know from experience that making things public does help me stick to it- more accountability.

Most of the time, I do fail to complete the resolutions but it’s still fun sitting down at the end of the year and making a list. I have a few I’m determined to actually do this year.

1. Reprogram my mind to think more positive. I am a realist so at times I come across as pessimistic but I also come across as highly optimistic at other times. I have been working through the past year on trying to distance myself from people in my life (in all areas) who complain a lot or just have a more negative vibe and it’s been working a bit.

2. Think less about the diagnosis’s and medical issues. I’m still in the coming to terms with not being fully healthy stage so it plagues my mind constantly but I found that pushing the thoughts about OCD to the back of my mind gives me longer times of not obsessing over something (I have been having issues with the OCD being an OCD obsession lately so not researching it and trying to think of other things has been helping me a tiny bit)

It may or may not work with the other medical conditions, since they’re all physical but it does help with the OCD. I have conditioned my body to function with the fatigue that comes with Hashimotos and I found the gluten free diet clears all my digestive issues up and makes the Osteo pain a tiny bit easier. My Osteo acts up but not always horrible, I found that really cold and warm weather both have no effect, it’s mostly moderately cold and wet weather. I am determined to find a way to slow it down. I know it’s progressive, but I’m still able bodied so I should be able to slow the progression down.

3. Find more easy for lunch and good dinner recipes to stick with the gluten free diet. I have been studying it for years, learning about it, following pages and blogs and saving recipes for a long time but for some reason, rice pasta became my go to for work lunches. I could toss it on the stove and forget about it for a bit but certain brands turn to mush no matter low low I set the heat or how long I cooked it.

4. Quit eating out at work. It ends up costing way more than I’d like to spend. I could take the money I waste on lunch and save for something different- something for the family or even treat myself to something. You also consume manmore calories with store bought or restaurant cooked meals than you do with making things from scratch.

5. Cooking and baking more often. When my 6 year old was younger, I stayed home. I was on Pintrest for new craft and recipe ideas constantly. I’m planning on returning to that since I have been working with 2 kids for 2 years now and am finally getting to the point of having a set routine that works. I’m able to spend quality time with my kids, work, eat, sleep, shower and do my hair and makeup and we don’t have a dirty house (it is a bit messy at times, but we do keep it clean). From the time my younger daughter and I wake up until I go to work, I have a schedule I just fell into- it’s not set in stone but it works and I get errands, doctor appointments and readings done in a decent time and since the holidays are over, everything is slowing down so I can focus more on the home making skills I developed from staying home for four years.

Those are five and along with those 5, staying gluten free without cheating or going back to a normal diet and quitting smoking are both listed.

I read that if a smoker quits by 30, they go almost to nonsmoker risk of dying from smoking related diseases but where I have OCD it turns into an extreme- “I have to quit by the minute I turn 30 or I’ll be doomed to die” and it will start to feel like I HAVE to do it, put tons of unnecessary pressure on me that I do not need and I know isn’t necessary and I’ll freeze and fail. Every time I quit, the OCD puts undue pressure by making me think in extremes. I know the problem, I know the cause and I have been working on trying to “rewire” my brain. I can think logically now, even when the OCD is kicking in, so now I’m working on easing the anxiety by facing whatever causes the anxiety in the first place. It’s always going to be there, it will always act up but the more I work on controlling it, the easier it is to differentiate between reality and the OCD.

I do have to wonder if other people with OCD have serious problems quitting smoking due to the OCD. How it affects me, it almost seems like it would be normal.

 

There is my list- put up publicly because, accountability. Do you do resolutions? If you have that tradition, do you fail or succeed typically?” Is it for fun or serious attempts at improving your life?

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I started a new facebook page

I started a new facebook page mainly trying to spread some awareness as I learn about EDS and the other issues I’m learning I have. 

https://m.facebook.com/New-Age-Dream-Girl-704151713114993/