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Jean in Newcastle
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Off prednisone - feeling more "normal" now. Unfortunately, someone forgot to tell my body that it was supposed to "fix" it for a while. It didn't seem to do anything except for the first day at 60mg. My general doc won't do anything more for me and I can't see the rheumatologist until April 15th.

 

Other than that, things are good. :)

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I know I am late to the party and I will own my osteoarthritis, migraines, insomnia, anxiety and depression. I am homeschooling two with some super fun LDs and homeschooling two without. My limitations have changed the way I homeschool over the years but not necessarily in a bad way. I have also learned to be gentle with myself. I do a homeschool mini co-op with two other families. Both other moms are energetic, healthy and strong. I admit I am jealous of their energy. I may have to use the spoon analogy when they ask me why I don't want to make 50 things off of Pinterest for a Groundhog Day party. I have to save my spoons for necessary. I don't have any spoons to spare for cute.

 

You ladies are an inspiration to me.

 

Amber in SJ

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My weekend was calm and relaxing, until some drama with SIL (who we recently moved next to and is starting to blur her boundaries between "aunt" and "parent") happened Sunday afternoon. I dont have enough spoons to deal with that carp, so by Sunday evening I was dead. Then yesterday morning I was dead before I even got up, and I could barely drag myself out of bed. Thankfully, yesterday was uneventful so I am doing much better today.

 

How are you doing today Jean?

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Horrible sleep last night. I'm not doing so well today. I've got pain in my legs and a horrible sinus headache besides feeling exhausted. At least I have zero outside commitments today. I might feel better after the megadose of ibuprofen and a shower.

 

How is everyone else?

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I'm sorry. Sinus headaches aren't fun. That reminds me that I have a sinus thing going and need to get out my oil of oregano capsules.

 

I had a rough night. I had made and eaten a very greasy Paleo "alfredo" that did a real number on my stomach. Ugh!

 

When did you discover oil of oregano? Do you find it to be effective? I'll try anything that would make sinus issues better!

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Yesterday was a major field trip to the Manterey Bay Aquarium. I love the ocean it makes me happy, happy, happy. Yesterday's walking around from 9am-4pm, bright sunlight & general all around crazy that is taking seven kids on a field trip means that I am awake this morning with painful joints, sharp pains in hands and feet, and that prickly, crawly feeling at the back of my scalp. My vision is fuzzy & lights are starting to flash. The way I see it I have three choices:

 

1. I can cancel piano lessons, and the two other activities we have planned for today. Set my kids on the "do the next thing" track for school. Take my meds, get back in bed and pray tomorrow will be

better. The consequences of choice one is my house will sink further into the messy abyss and my kids will not get to do things they have been looking forward to.....again. The new normal.

Unfortunately two of these activities are not regular activities but are special occasions and if I cancel they are not going to come again.

 

2. I can double my meds (shhhh, do not tell anyone I do this) keep the pain at a managable level for the day. Get all my stuff done. Get my kids to their activities. Have a semi-clean house. Make my

kids feel like their mom is the same as other moms. The consequence of choice two is somewhere around 7pm the pain will take me out and I will spend the next 24-48 hours lying on the bathroom

floor crying & vomiting, but the next couple of days have fewer activities so this might be possible. Another consequence is that doubling my meds renders them ineffective for several weeks.

 

3. Some combo of 1 & 2.

 

I don't really remember what it was like to wake up and not have to run through the mental & physical checklist to try to figure out what kind of mom/ teacher I am going to be today.

 

Amber in SJ

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Yesterday was a major field trip to the Manterey Bay Aquarium. I love the ocean it makes me happy, happy, happy. Yesterday's walking around from 9am-4pm, bright sunlight & general all around crazy that is taking seven kids on a field trip means that I am awake this morning with painful joints, sharp pains in hands and feet, and that prickly, crawly feeling at the back of my scalp. My vision is fuzzy & lights are starting to flash. The way I see it I have three choices:

 

I don't really remember what it was like to wake up and not have to run through the mental & physical checklist to try to figure out what kind of mom/ teacher I am going to be today.

 

Amber in SJ

 

 

:grouphug: Hope today works out better than expected. That's a very tough choice.

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I don't find that I have anxiety as a result of the chronic issues we have.....but I do find that I am quicker to jump on real issues that bump up. When #3 started complaining of double vision, we were in with the ped opth ASAP as that was the issue that led to #2 being diagnosed with a brain tumor. #3 and #4 have both had MRIs and have been diagnosed with issues that probably wouldn't have been caught as early as they were had we not been through what we had with #2. I think my "mommy intuition" is better....I knew early on in my pregnancy with #5 that xyz issues were going to pop up....and they did, but I think I made it to 33 weeks gestation with her only because I had raised the issue early and ultrasounds verified my gut feeling. Those ultrasounds and my symptoms were my ticket from home bedrest to hospital bedrest. Being stuck on hospital bedrest and the monitors and seeing the peri everyday saved both of our lives repeatedly through the last couple weeks of the pregnancy from he77.

 

We just had our 2nd major stormfront move through in a week. I'm hoping to be feeling better soon. I had a few incredibly productive weeks earlier, but this past week I've been on the couch.

 

Baby will stop being homebound in April and I'll start having to take the kids to their activities again. Can I say here that I am a bad mommy and really don't want to start that again? I know those activities are great for my kids, but it's hard on me...

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I don't find that I have anxiety as a result of the chronic issues we have.....but I do find that I am quicker to jump on real issues that bump up. When #3 started complaining of double vision, we were in with the ped opth ASAP as that was the issue that led to #2 being diagnosed with a brain tumor. #3 and #4 have both had MRIs and have been diagnosed with issues that probably wouldn't have been caught as early as they were had we not been through what we had with #2. I think my "mommy intuition" is better....I knew early on in my pregnancy with #5 that xyz issues were going to pop up....and they did, but I think I made it to 33 weeks gestation with her only because I had raised the issue early and ultrasounds verified my gut feeling. Those ultrasounds and my symptoms were my ticket from home bedrest to hospital bedrest. Being stuck on hospital bedrest and the monitors and seeing the peri everyday saved both of our lives repeatedly through the last couple weeks of the pregnancy from he77.

 

We just had our 2nd major stormfront move through in a week. I'm hoping to be feeling better soon. I had a few incredibly productive weeks earlier, but this past week I've been on the couch.

 

Baby will stop being homebound in April and I'll start having to take the kids to their activities again. Can I say here that I am a bad mommy and really don't want to start that again? I know those activities are great for my kids, but it's hard on me...

 

You are not a bad mommy, activities are tough on moms, especially moms with chronic health issues.

 

Yes, I've noticed I'm faster with having things evaluated for Dc too. Not always so for myself.

 

Hope you are feeling better soon. I'm really hoping for the couch. I'm pacing myself, couch time, do stuff time, couch time......the shower helped a little. As long as I am on the couch I feel almost normal. It's when I get up to do that I don't feel so great.

 

I need to get to the grocery store and library today though and I'm not looking forward to it. Thankfully they are close to home.

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DS has a progressive degenerative autoimmune disorder. I would prefer not to name it on a public forum because it is so rare that it would be very identifying. He recieves daily OT and/or PT, sees at least one specialist a month and we travel 4 hours each way to see a specialist every few months. I also spends several hundred dollars a month in supplemental therapy that insurance does not cover. People think I am nuts but I refuse to stop fighting.

 

On top of that DS has dyslexia and is not reading.

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OK - strange question. If you have an illness that makes you always achy and feeling fluey, how do you know if you are really sick? I mean, I would know if it got bad and I was throwing up or coughing up a storm, but what if it is low-grade? Do you know? Ds feels poorly and has a low grade fever. I feel like i"m in a flare. But is it a flare? I had two days off, so I was due for another flare.

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OK - strange question. If you have an illness that makes you always achy and feeling fluey, how do you know if you are really sick? I mean, I would know if it got bad and I was throwing up or coughing up a storm, but what if it is low-grade? Do you know? Ds feels poorly and has a low grade fever. I feel like i"m in a flare. But is it a flare? I had two days off, so I was due for another flare.

 

That's a good question, but I haven't found a satisfactory answer. I just try to avoid going to my doctor's office as long as possible. If whatever is going on persists to the point that I can't stand it, I finally head to my doctor's office and let her decide. I don't head there very often. Usually, if I think something besides my normal pain/symptom cycle is happening, I try to take it easy and see if it passes. The hardest part for me is deciding whether exercising is going to be helpful or make things worse.

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I haven't checked iin here for quite some time. This week has been easier because dh took the boys back to our place out of town because he & his dad are moving back this weekend. He wanted older ds to help load furniture, etc., and younger ds just wants to ride in the moving van! So, it's just the girls and me...much less work.

 

On the downside, the migraines are ever present, and vertigo happens several times a week. So, while I don't have as many demands, there's no escaping the health issues, which I know you all understand. Jean, I loved the spoons analogy; it's so very true. The truth is, I should be driving down to where dh is tomorrow because there's so much stuff, and an extra vehicle on top of the Penske truck would be so handy. However, I just don't have the spoons available to drive 6 hours and help move stuff. Dh's dad will make nasty comments about my "poor dh" and insinuate that I'm a rotten wife and mom. It's part and parcel of my life. Dh will stand up for me, but his dad only says things when there is no one else around and, if confronted, denies it.

 

I hope everyone gets to hold onto at least one additional spoon in the next few days. I do think of y'all despite not being around much.

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I felt better yesterday and took it upon myself to clean my house, including steam cleaning the carpet. Now I wisjh I didn't, I started feeling ill around lunch and collapsed on my bed after I took a shower. I slept all afternoon. I just hate that if I do something one day, I pay for it the next. It can be so miserable and frustrating.

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Lisa, I know that when I first got my test results of my cortisol levels I was so happy because it was hard proof that I am not lazy! I'm sorry that your FIL is nasty to you.

 

 

Hi again, Jean! I suppose I could just google, and if you're too worn down to reply, don't worry. I'm just not exactly sure what I would even be looking for regarding cortisol. I'm curious as to why they tested your cortisol levels...more accurately, if I should look into having mine tested. No doctor has ever checked this or even mentioned it. Do I just need to start by researching why cortisol levels should be tested? Well, gee, that seems pretty obvious now. I suffer from brain fog. My apologies. Feel free to ignore. It's just that I hate to delete it all since I've already typed it. You can consider it the equivalent of me talking to myself. :)

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OK - strange question. If you have an illness that makes you always achy and feeling fluey, how do you know if you are really sick? I mean, I would know if it got bad and I was throwing up or coughing up a storm, but what if it is low-grade? Do you know? Ds feels poorly and has a low grade fever. I feel like i"m in a flare. But is it a flare? I had two days off, so I was due for another flare.

 

I always know b/c my skin hurts. Seriously. I am ALWAYS achy and flu like, but I can normally touch my own arm or side and not HURT. If I am really sick, my skin all over my entire body, HURTS, even with just the slightest touch. Does that make sense?? I ONLY get that way when I am sick, no matter what kind of sick it is. I think it is my body's own indicator, since everything else is broken.

 

Lisa (or anyone listening in to her talking to herself!) - the cortisol levels were to see how my adrenal glands were doing since I have such overwhelming fatigue.

 

Sadie - are you feeling any better after the antibiotics?

 

The thing is, cortisol levels, even if you have issues with your adrenals, can go up and down, particularly if you just had blood tests. My cortisol levels were always "normal" by blood. The only way I was diagnosed was by the 36hr urine test. I actually had to switch doctors b/c my first doctor would only look at the blood tests, and was convinced that someone as young as me (I was 26 when I was diagnosed) couldn't have Addison's Disease.

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Lisa (or anyone listening in to her talking to herself!) - the cortisol levels were to see how my adrenal glands were doing since I have such overwhelming fatigue.

 

 

Thanks, Jean!

 

I always know b/c my skin hurts. Seriously. I am ALWAYS achy and flu like, but I can normally touch my own arm or side and not HURT. If I am really sick, my skin all over my entire body, HURTS, even with just the slightest touch. Does that make sense?? I ONLY get that way when I am sick, no matter what kind of sick it is. I think it is my body's own indicator, since everything else is broken.

 

The thing is, cortisol levels, even if you have issues with your adrenals, can go up and down, particularly if you just had blood tests. My cortisol levels were always "normal" by blood. The only way I was diagnosed was by the 36hr urine test. I actually had to switch doctors b/c my first doctor would only look at the blood tests, and was convinced that someone as young as me (I was 26 when I was diagnosed) couldn't have Addison's Disease.

 

 

Oh wow! My younger dd and I also have the whole skin-hurts-when-we're-sick thing. Every doctor we tell looks at us as if we're crazy. I was beginning to think we might just be crazy indeed. Also, somo_chickenlady, Jean, and anyone else who wants to chime in, whatmtype,of doctor or specialist,ordered the cortisol test?

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Lisa - I've had cortisol tests done by both MDs and NDs. The blood test was useless. The saliva test (which I had done twice by two different doctors) showed that I had no detectable cortisol in the early morning, had a spike mid morning when I feel my best, then had it go to subnormal levels for the rest of the day and then had a spike around midnight when I have insomnia. . .

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Lisa - I've had cortisol tests done by both MDs and NDs. The blood test was useless. The saliva test (which I had done twice by two different doctors) showed that I had no detectable cortisol in the early morning, had a spike mid morning when I feel my best, then had it go to subnormal levels for the rest of the day and then had a spike around midnight when I have insomnia. . .

 

 

Ok, this sounds like something I need to make a priority. Not sure our family doc would do much more than scoff, so now I know a second opinion or an NP could be an option to check into. I just wasn't sure if I needed some sort of specialist. Thanks so much! :)

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My cortisol tests were done by an Endocrinologist, and the blood test didn't show anything. I never had a saliva test done. I had to collect my urine for either 36 or 48 hours in a big jug, and they tested my cortisol levels in that. That, as well as a positive adrenal antibodies, was how I was diagnosed with Addison's Disease.

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I should make the point that I don't have Addison's Disease. My adrenal problems are a secondary problem - in other words - other problems were stressing my adrenals. We've looked for and identified the other problems - parasites, nutritional deficiencies, GI problems - and as those have been addressed, my adrenal function has improved. So what you find and how you find it might differ depending on whether it is a primary or secondary adrenal problem.

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Good information, Jean, thank you. I'm really sorry you're having a difficult day today.,I hope it gets better! Hugs.

 

Physically, I'm feeling fairly decent today, so I' trying to accomplish as much as I can. I've encountered two significant external sources of stress this morning, and I'm hoping/praying the stress doesn't manifest with vertigo as it frequently does.

 

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Hello, I don't homeschool I ended up on the boards because I was self-educating and stayed for the company.

 

I have fibro, osteoarthritis in my shoulders and neck and hortons. Right now the fibro is relatively under control, the osteoarthritis however is NOT and since the regular migraine medications make me sicker the Hortons is always lurking.

 

Thanks, Jean!

 

 

 

Oh wow! My younger dd and I also have the whole skin-hurts-when-we're-sick thing. Every doctor we tell looks at us as if we're crazy. I was beginning to think we might just be crazy indeed. Also, somo_chickenlady, Jean, and anyone else who wants to chime in, whatmtype,of doctor or specialist,ordered the cortisol test?

 

The skin-hurts thing is how I know I have a fever. Even my softest clothes make me want to cry.

 

Someone posted about feeling dizzy early (I lost the quote) that is how I know I am going into a fibro flare-up.

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Hi all, I haven't been keeping up here :( ...(Brace yourself for a long whine, or skip this part) ...Kiddos are both sick, and DH is out of town (isn't that the way it always happens)... DS has Flu A *and* B, and DD (a toddler) has strep throat, but was negative for flu. We are quite the petri dish here. DS is being treated for strep, too, though his test was negative. My mom came up to visit and help out while DH was out of town, and everyone ended up sick - she did, too! Aaack. To boot, she is covered in hives. I am sick as well - I have that all over skin hurting feeling someone mentioned above, plus sore throat, headache, body aches. Whew. Poor DH comes home from Germany tonight, and plans to don his hazmat suit at the door. My grandmother used to say that if things don't get worse than this, I can handle it... That's what I keep telling myself. :)

 

I just skimmed the last few posts, and wanted to add that I also took higher doses of Vit D to get the level up. I took 50,000 IU weekly, and 2,000 daily. 2,000 is my maintenance dose. So if one's level is very low, it really may help to take a higher dose to get it up and feel better quickly.

 

One quick Addison's question... (for my Addison's Buddies)... I am stress dosing at my doc's suggestion, since I'm sick too. My plan was to stress dose for 3 days. Does that seem adequate? How do you know when to stop? I am still new enough to Addison's that some guidance would be great...

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Yes, it is a fat soluble vitamin and should be checked occasionally. You could ask for just a lab appointment to check your vitamin D levels every three months but my experience is that the levels don't shoot up that quickly for it to be a concern that soon. Normal goes from 30 all the way up to 100. I do best when my levels are around 80. Doctors tend to stop recommending supplementation as soon as you hit 30.

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I'm sorry to beat the vitamin d horse further, but I've had a lot of people suggest I take a higher dose than the dr recommended. It's a fat soluble vitamin though - how would I know that I'm not eventually storing too much? I doubt my levels will be checked again before next year.

 

Could you ask to have your levels tested sooner? My doc checks mine every few months when I am trying to raise Vit D levels (obviously, I've had the issue of low Vit D more than once). I would not want to wait a full year to get tested again.

 

Also, I read an interesting article by Dr. Mercola on D recently. Some of his ideas are a bit out there, so take it with a grain of salt... but I seem to remember that he suggested that for building Vit D levels through sunshine exposure... not to shower immediately? I will try to find that article and link it here later, but off the top of my (sick and fuzzy) head, I remember that he said it's important not to shower for X amount of time. Just a thought for all of us struggling with D levels.

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