B12 injections are Life Changing!

Seriously.

OMG.

You cannot believe how much better I have felt over the past two weeks.

I've gone from being afraid to hope for any improvement; to being moderately impressed; to being out-and-out dumfounded by how much this has helped me.

The bone-deep, exhaustion is completely gone.

I still get tired; but when I get tired - I rest and then - voila, I am no longer tired. OMG! I can take a shower without needing a nap afterwards!  I can go for a walk with the dog and I come back feeling refreshed instead of needing to lie down for a good 15 minutes afterwards!

But, now I'm scared. I'm scared to overdo things and end up where I started. I'm scared that if I try to do too much I won't feel well again and that the next shot won't fix it.

I have YEARS worth of housecleaning to catch up on. And I'm taking it slowly. On weeknights, I'm only doing about 10 - 20 minutes worth of 'catching up' on top of my normal level of effort (which was literally about 10 minutes a day). On weekends, I'm only doing about 30 minutes worth of 'catching up' on top of my normal level of effort each day (which was around 20 minutes to an hour a day). 

I've lived for the past six years with the knowledge that if I overdo things, that I won't be able to get my work done or I would be stuck in bed because I overdid things.

And I'm scared to death that if I overdo things now that I'll be stuck back in the disasterous situation I just pulled myself out of.

I figure I'll work my way up to my old ways slowly. Hopefully by the end of May I can double my effort on a daily basis. And maybe - by the end of June I can actually devote four or five hours each weekend to catching up?  I figure the house/apartment has been this much of a disaster for this long, taking my time and not risking overdoing things won't kill us. If I'm really better - then it will still get done.

And then - can you believe this? Maybe by August or September I can start thinking about working out at a gym again?!

I'm so excited, but so scared that it won't last.... that I feel almost 'stuck'. Hopefully by working through it gradually I can figure out what level of effort I can maintain and figure out what my new 'normal' is and lose some of that fear.

Sore today

It's been a bit of a rough week. After all my excitement getting B12 shots (which are LIFE CHANGING!); I found a massive lump in my right breast. It's a complex cyst with debris. (Third mammogram this year and an ultrasound to confirm) Original plan was to let nature take its course and if it didn't get any larger or get sore - just let it be and/or hopefully go away on it's own. It got sore. I got irritated and decided I needed to go in. I (sort of) regret going in. They aspirated it yesterday and it really hurts today. BUT hopefully by tomorrow it shouldn't hurt as much and within a day or two the pain should be mostly gone. Still have a lump the size of a chicken egg in my breast though. And while things could have been SO MUCH WORSE and I should be thankful that all it is, is a harmless cyst. I still would prefer not going through all of it.

Awesome news

I have been really stuggling for years with fatigue and chronic pain.

I have all the symptoms of MS, except I don't have it.

It could then also be b12 deficiency... but every b12 test I have started six months after I started taking b12 pills and/or sublinguals. The tests always came back negative.

The reason I was taking the pills was because after my pulmonary embolism, I was tested for hyperhomocystienemia... which is a fancy name for some type of b vitamin deficiency... my mom couldn't remember the fancy name so she went in to get tested for b vitamin deficiency. This led to over twenty individuals in my immediate and extended family getting diagnosed with b12 deficiency. They all had similar symptoms to I, all got put on b12 injections and all found near immediate relief.

I talked to my doctors to find out why I was taking the pills, but they got an injection. The answer was that if you test low on b12 specifically, there is a better chance your body can't absorb it... often related to genetic factors and runs in families. So if you take pills but your body can't absorb the nutrient, then it doesn't fix the deficiency and doesn't resolve the issues. Which was right where I was.

I read several studies that indicate the longer you have been sick, it sometimes takes more b12 to treat symptoms. So I started taking mega doses of the pills. For about $90 a month I improved my symptoms by about 10%. Awfully expensive for only a little improvement. It did give me the longest period of time with improvement to my symptoms... but I didn't feel like I was ever going to gain back the rest of my life if I didn't figure it out.

Back to reading research papers. And I found some that indicated that if you are taking b12, but not processing it properly that the standard test might be getting bad results because it really measures incoming b12, not the amount of b12 that your body converted to a useable form. Which comes back to why they don't give patients with b12 the pills... because it would throw off the test results for further testing that might be needed to measure the effectiveness of the treatment.

But since I was never diagnosed with b12 deficiency, no doctor would allow me to try the injections. Last year at this time I stopped taking the supplements. It takes seven years or more for the body to eliminate b12 from the liver. I figure that eventually I should be able to get a positive test result for b12 deficiency if it finally got out of my system... thinking that it might be the only way to finally get the same treatment that the rest of my family got.

Went in to the doctor today for a regular follow up and I mentioned that things were getting worse again. That it had been a year since I had taken any b12. I mentioned that I was still convinced that I thought I would do better on the injections... and almost fell out of my chair when he agreed to prescribe the injections. My last b12 test came back drastically lower than the previous ones, but still in the normal range. He said that it would be off label treatment, but its not like the injections can cause any harm as side effects are extremely rare... and it is impossible to overdose on b12. So its not like it would harm me. It might help, either because I am right or maybe simply because of the placebo effect. Honestly I wouldn't care if it helps... regardless of what it takes.

So, there's at least hope that my trials and tribulations might be coming to an end. I know I shouldn't talk like that and I shouldn't get my hopes up... but I really, really want to get better. REALLY REALLY want it bad!!!

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Hardly have anything to say

But I do want to get better about posting my thoughts out here. That was SO helpful when "a" was really young and "A" was really ornery.

And now "A" is less ornery and "a" is much more ornery.

So, what's going on? -- random thoughts -- brain dumping commencing.

Saturday - was a bridal shower for a nephew's fiance. She didn't know most folks and lives in Ames right now and he lives in Des Moines near us. So, kind of a long drive (200 miles each way) for the shower. But she raked in some goodies. Since "A" is engaged now, I'm thinking that I should try to do a shower out east as well next spring before their wedding.

Wasn't sure what I was going to do for the rest of the weekend, was kind of thinking of taking advantage of being in Eastern Iowa - and ended up spending a good 12 hours chatting with my ex-sister-in-law until the wee hours of the morning. Crashed on her couch for about five hours and then raced back to Central Iowa.

"a" was off with his dad on a weekend cub scout camping trip. Very nice. He had fun, but got really tired.

I need to figure out a third 'a' abbreviation. "A"s fiance has a son with an A name - go figure. So, now there is a 23 yr old son with an "A" name, an 8 yr old son with an "a" name and a 4 yr old grandson with another 'a' name.... lol...

Work is quiet. Amazingly quiet. Which also means borderline boring. And I've only just started. I have a lot more to learn about the business and background of how their systems are set up; but there's not much challenge to the actual work. I get a little frustrated because I don't feel challenged which means that when it comes to performance reviews, I find it hard to sell that I need a promotion or raise. And since that was the whole point of transferring to this department - I'm afraid I've got myself into a dead end. I'm just going to have to be patient and see how things go... but I'm not expecting miracles - I just want enough of a raise that I can afford to start saving for a down payment so I can buy a house again... technically I could if I wanted to give up any and all vacations. But I'd like to get the raise (since I'm not even getting cost of living raises) just so I'm not 'stuck'.

Vacation plans - taking two weeks off toward the end of June; going to go to South Dakota, see the bad lands, some caves, some buffalo, Mount Rushmore, etc. Take a week towards end of July and early August to go camping out in Eastern Iowa. Hoping to take the entire family, but "A" and his fiance might have to work on the weekend... so we'll see.

Teaching - I'm teaching a noon-hour knitting class downtown one day a week... taking a long lunch hour at work, driving down, setting up, teaching, tearing down, back to work - grab food along the way and crashing that night. It's going pretty well, considering. Considering I have over 40 students.

Cupcakes

Cute cupcake contest @ school.

Not as polished as professionally decorated cakes, but definitely cute.

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nice weekend, but now i need some rest

We spent a long weekend at Honey Creek Resort... rented a cabin and spent most of our freetime at their indoor waterpark. I spent most of that time in the hot tub. I could say that I did it purely in the interest of making sure everyone could find me easily if they couldn't find anyone else. But anyone who knows me knows how hard it would be for me to spend time anywhere but the hot tub.

'A' formally proposed marriage the night before the family trip... so we now have an S in the family... and she brings along a four year old little boy who also has an A name... so I am going to have to come up with a nickname for him. He is my favorite grandchild already because he tells me I am too young to be a grandma, so he is going to keep calling me Penny.  We were trying 'nana' on for size, but it didn't stick. 'a' is trying on the Uncle title... and torn between wanting to play with his nephew and getting frustrated with him. "Mom, he asks soooo many questions." Then there was the time I had to pull him off of him....they are close enough in age that they can fight like brothers. 'a' landed in time out over that fight.

All in all, it was a great, if tiring weekend. S got allergies, grandson ended up with an ear infection... and I need a three day nap.

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Proud Mom Post

"A" got home from his long not-so-fun trip on Tuesday.

Wednesday, his gf was working and he was home with her son all day.

What does "A" do?

He cleans the apartment, works on getting laundry caught up, and packs for the whole family for the long weekend we have coming up.

She gets off work a little stressed because she has a lot to do for the trip and knowing she's working Thursday night as well... and he's got it all done for her.

Finally feeling a little like some of my nagging is finally turning out to have done some good.