Monday, September 22, 2014

Starting my treatment (yet AGAIN) - posting here to keep me honest.

OK...

I had a pretty bad flare up. Symptoms of nueropathy-like pain, painful lumps throughout my body... no ideas from any doctors.

I did get my regular doctor to agree to help me start managing my symptoms (which he had failed to do very well for the last several years)...

But he put me on potassium supplements (my potassium has been mildly low for the last several tests, but he hadn't felt the need to treat it before I pushed him on it). And I'm on two different forms of muscle relaxants - one that knocks me out at night and one that I take during the day.  I didn't think they were helping with the nueropathy-like pain (still don't know) BUT I have noticed that the over-all achiness (think flu-like symptoms of whole body ache) is better and in fact, if I forget a pill, I notice it worsening - take the pill, it improves. SO ... YEAH! something that is helping with something.

I've been on those three for almost a month.

And I've noticed mild dry patches of flaking skin on my face - which I'm led to believe can be a folate deficiency. So, it's time to start back on my methylation protocol.

I'm probably going to end up taking a lot of the same things I did before. Only I'm going to try to mix it up a little differently. To this day, I don't think that my supplements are responsible for my flare up. However, I stopped taking them as a better safe than sorry type of thing. I also think I'm going to 'schedule' in a week off of supplements every month and a month off every year or six months. I think that it's unlikely to be harmful and that if I only take a month off - I won't do the 'restart' progress... I'll just resume where I left off. BUT, that said... I've been off for about three months now... so ... tapering up from the bottom is where I'll be.

STARTING TODAY (and for the rest of this week)....

B complex
ALA
Vitamin D drops
Potassium
1/2 pill of daytime muscle relaxant twice a day
1/4 pill of nighttime muscle relaxant at suppertime

House buying on a REVISED budget

Sadly, I was trying to negotiate with the seller on the home... to fix a repair that the FHA mortgage company had deemed REQUIRED, while also pursuing the option of determining if I could qualify for a conventional mortgage. In the meantime, I had offered to pay the entire cost of the remaining repair.

AND the seller pulled out of the transaction.

This was the second home I had paid for an inspection for, but which wouldn't pass FHA standards.

There was a third home. Priced the same as the last home - but VASTLY outdated (needed a new kitchen, some pretty serious remodeling). The last home was in better shape, but almost 500 sq feet smaller. Given how dated the kitchen, appliances, carpeting, etc was. My concern with even looking into that property is that we'd end up in the same situation. House needing something more involved required of it, seller not interested in putting the money into it.

Sigh.

Smart money would go to waiting for a third opportunity that had a little LESS intense effort. Sometimes it's the waiting that pays off the most.

Smart money would go to determining if I can get a conventional loan with money for remodeling.

Yeah. I'm sick and tired and tired and sick and don't want to live here any longer.

Instead. I kept looking and after only one weekend of feeling really sorry for myself and looking at the exact same houses I had already rejected for not being the type of home I wanted, nor the right area, or too much money.... I got an email for a brand new listing.

This one is a 1 1/2 story townhome. There's a first floor master, first floor laundry, open concept kitchen with 2-car attached garage. It's not perfect. But it's definitely in the range of having several things I really like about it. It's further away than I want to be, but nowhere near as far away as I feared I would end up. It's very close to my favorite grocery store and my work. Far enough away from my son's school which involves driving him to and from school every day (I was already picking him up daily).

It's also about $30k more than the townhome I wanted to buy. The benefit is though, that there isn't going to be a punch list of repairs and upgrades that need to be done immediately. I've got a very tiny list of very small repairs (new plumbers tape for the shower hook ups, new caps for the deck railing, new ceiling fans)... and only one thing on my longer-term plan (replace carpeting with laminate wood flooring).

I had hoped to buy for less and invest slowly in the upgrades/fixes needed. But the last thing I wanted to do was invest more money into housing inspections on a house that I couldn't buy. Lack of patience being a downfall.

But, I'll have a nice house that meets my needs well, and who knows what will happen in ten years.

Wednesday, September 03, 2014

House buying on a budget

I'm hopefully closing on a townhouse before the end of the month (well, we'll see if we will be closing at all... this has been a 'challenging' transaction).

In my house we have a mom, an 11 yr old boy, a dog, and a cat.

Visiting often are the grandchildren, though only the 7 yr old tends to spend the night right now... the newborn is still pretty dependent on mom and dad... but if the new house works out and if I can keep it clean, I'm hoping for some baby sleepovers in the future.

Primary concerns for me were that with my health and issues with my knee... that I wanted the kitchen, bathroom, main bedroom and laundry all on the same floor. I didn't want a house too big for me to keep clean. And I wanted enough space for me to be able to comfortably work from home.

Several bonus factors would include:
 - a nice wood cabinet-based kitchen
 - non-stainless steel appliances
 - wood or wood laminate floors
 - attached garage
 - a family room in addition to the living room (that the boys can play with toys in)
 - no need for a formal dining room
 - a bonus room that I can use for crafting so my bedroom isn't filled to bursting with craft supplies
 - an open concept area

SUPER big bonus factors would include:
 - an HOA (I've got enough fun things I'd like to do with my free time if I had the energy to enjoy it, yardwork and shoveling snow isn't on the list)
 - a neighborhood pool
 - a view of a pond/lake/creek/river - anything water
 - a sunroom with a hot tub - OR AT LEAST room for that as an improvement

The house I'm buying has ALMOST ALL of the things on my list and is priced around $10k less than a lot of the other townhomes in the same area, AND $40-60k less than two story homes that only have some on my list.

What doesn't it have? Well, the kitchen has a bit of a mash-up of appliances - the refrigerator is stainless steel. But, it's working and the stove and dishwasher aren't stainless steel... so, I'm just putting the kitchen remodel (so I can do a side by side refrigerator and get some decent counter tops) on the five year plan. It also has a little more carpeting than I prefer. So, within a year I hope to replace the carpeting in the basement (family room, bonus room, second bathroom and hallways are all carpeted..... sigh) with laminate flooring. And in my three year plan, I hope to replace the upstairs carpeting with laminate flooring (living/dining area, two bedrooms, and bathroom ... all carpeted). And no sunroom, :-( ... but there's a beautiful deck off the living area and with the walkout basement there's a patio area that needs some work. In my five year plan we'll also plan on updating the patio area and see if we can screen in the patio at the same time. It's not a sunroom, but it might keep me going and giving me a chance to explore some 'outdoor' without the mosquito bites until I can afford to update the deck to a sunroom/deck area.

What am I giving up that other people want in their homes... I'm not getting all new carpets (I'd end up ripping them out anyway). I don't have all new top-of-the line stainless appliances (I don't want stainless anyway, have you ever had them with kids? You can never keep the fingerprints cleaned off)... the refrigerator and dishwasher are pretty new... the stove is completely outdated... but new electric stoves aren't that expensive - and I can buy a new stove next year.  The kitchen hasn't recently been remodeled. But it GORGEOUS just as it is (well, with the exception of the old stove, ugly stainless fridge and countertops)... but I LOVE LOVE LOVE the cabinets. And I love that it's got wood flooring in the kitchen. And there's an oversized, very interesting kitchen island with the sink and dishwasher in it. I plan on investigating the cabinets (that I LOVE) and seeing if there's a way to move the fridge (with water for an ice maker to the side wall, and add new cabinets where the refrigerator used to stand (so I can have a bigger fridge), replace the counter tops and add a breakfast bar to the current island. I'm thinking my five year plan includes the kitchen remodel. Bonus is that I get to keep the things I love about the kitchen that others would have replaced if they had updated it, and really make it mine.

I'm not getting a walk in closet. I'll miss the walk in closet I have now. I will. But there is a ton of closet space in the house... just none of it walk in closets. I've thought about it a lot, and I can totally live without it in the master bedroom. I've thought about ways to add one and I just think it would cost too much of the square footage of the bedroom. The spare bedroom in the walkout basement is a little larger than the master and if I really decide to do it (and my knee doesn't expire first) - I could consider updating that bedroom to replace the current closet with a walk in closet. But it's just not that important to me. And that's the key - finding the 'bonus' items that other people want to pay more to get - decide which aren't important to you, and take those things off your house-hunting list.

First floor laundry was a MUST HAVE (note, my townhouse is a ranch with w/out basement)... if I was buying a two story (which I wouldn't really want, then I'd want the laundry on the same floor as the master bedroom). Sadly, this particular laundry is an older stackable unit. I've investigated the closet it's in... and I think I can fairly easily upgrade to the newer stackable front loaders... so that'll be in my plan for the coming year. I'm investigating a single-unit washer and dryer in one... and that's still on my maybe list. I wish they weren't quite so new to the market so that the technology was a little more 'sure' ... but if I can get one that I feel confident that it will work - it will free up space in the laundry center AND at the current prices ... save about 33% on the replacements. PLUS then you can decide if you want the washer to stop after it's done washing (if you have delicates you need to lay out to dry) or let it go from washing straight to drying without even having to move the load (wow! how cool would it be to skip that step.... now I know... most people examine the clothing before putting it in the dryer so they don't 'set a stain'.... but I never do... and if one appliance can take up half the space and do the job of two appliances? Well, I'm interested in learning more about it).

The house has great distinct architectural features, an open floor plan from kitchen through dining 'area' through living room (If I got a dining room - it would be used as an office anyway). The two bedrooms and the bathroom are off of the living area - no hallway except for the front door through to the living area (and beside the garage). AND there's a pond in the BACKYARD. Seriously. Really. Views from most windows of the pond. And it's not one of those nasty bordered with white gravel man-made ugly ones, either. Technically it is man-made - there's a dam at the other end. But it would be wet ground anyway if the dam wasn't there.... and it's old enough (from the 70's 80's era) that it has things like weeping willows and cat tails and all other lovely pond-living things. They did put an aerator at the other end of the pond (the deeper end) and I'm at the more shallow end... but I can't wait to sit by my window and just gaze out at the pond. Something about a view of the water just eases my soul.

The biggest challenge with the buying process has been that the current owner didn't want to do any repairs. It's been difficult as an FHA loan requires that the home meet a certain safe and sound criteria that this house misses by a couple of things. But, we're slowly, but surely working through those changes... and in the meantime, I'm trying to work through seeing if I can't qualify instead for a conventional loan just in case things don't work out the other direction. For the couple of things left on the owner's to do list - if they fall through, I'd insist on lowering the selling price so that I can do the repairs myself (assuming I can go through a conventional mortgage).

NEGOTIATION. not my strong suit. But I'm trying.

Saturday, August 23, 2014

On the road to remission

I'm back off of coumadin. Now I have no idea why I was on it if it wasn't because the surgeon had convinced my regular doctor that I should be on it for life.  I think they were just playing cover their you-know-whats-its. But it's a pain being on it, so I am not fighting them to keep me on it.

I'm still getting lumps all over my body, my arms and legs and torso... they come, sometimes they go... and they hurt. But the fact that they do sometimes go... well, that means that they shouldn't be anything cancer-related. And now that the worst of the pain is backing off and the pain I'm left with is mild enough... I'm going to be taking a wait and see approach with them.

I'm able to be active for a few hours every day now (whereas 10 minutes sitting in a chair was too much for me only a month ago). Still not 100%. BUT SO MUCH BETTER THAN BEFORE.

I'm going to try to go back to work (well, work from home) on Monday and see how it goes. My doc would prefer half days. But insurance doesn't want to work that way - either I'm too ill to work altogether or I'm well enough to go to work. Thankfully I can work from home so we'll do that for a few weeks and if I'm still in recovery mode, we'll start trying to do some time in the office.

The doctor finally did come back with an unofficial diagnosis - so I can put a label to things. He truly believes it's Chronic Fatigue Syndrome (ME/CFS). Only putting that in the paperwork can really screw me over with the insurance company and future doctors. It's a seriously misunderstood and underdiagnosed condition. And there are far too many doctors who either believe it doesn't exist OR who treat it like it's all in your head. Millions of people are getting poorly treated who have this. Millions of dollars in research have been fraudulently taken and applied to other conditions - which means that they still don't really know how to prove it exists. Unfortunately, until research is available - it can continue to be dismissed by doctors and left untreated.

BUT, the good news is that my doctor did FINALLY (it's been over 9 years) agree to start helping me manage my symptoms. I've started muscle relaxants to see if that will help with the lumps and pain from the lumps (in case it's just knotted up muscles - I don't think it is - but I'm tired of not trying anything because we don't know what they are). And shortly I'll be starting some potassium supplements for my low potassium levels which I am sure is a result of my long-term diahhrea.

After that, I'll start restarting my other supplements that I stopped because I couldn't be sure they didn't cause some of the issues.

I'm also going to start tracking my symptoms and supplement changes again in a spreadsheet... it's kind of a pain to do it... but I miss things if I don't try.

___
And in the meantime, I'm back to get yet another diagnostic mammogram next week. Boy am I sick and tired of getting lumps in my breasts. They always end up being cysts (thank goodness). And I'm sure the four new lumps are just that, yet again. But it's better safe than sorry to check. It just gets really old (and expensive). As more often than not the mammo is followed by an u/s... and between the two it tends to run around $1k in expenses. I guess the good news is that I've hit the high deductible limit so I'll only have to pay around 20%. But geez... it would be nice to go two full years without going through this.

Thursday, August 14, 2014

New exercises in thrifting

I an hoping to buy a new home for my son and myself quite soon.

Going from a 2 bedroom 1000 sq ft apartment to a 3 bedroom, family room, living room townhome and around 1900 sq feet of living space means I will probably be a bit short of furniture.

So, I've started thrifting.

I've always loved Craigslist and it's my primary source. But after flipping through it a few days... I started wondering if there were other options.

I did searches with my location and freecycle or shopper in Yahoo groups and in Facebook. And started to have access to more used items.

Some of my recent buys seem good... some I already regret, but think I can fix.

1) small antique wooden desk - $40 (I probably spent too much) - I wish I had waited a bit and found one that was light wooden color instead of as dark as it is.  There's one drawer that sags a bit and needs a spot of wood on the underside to keep it in place properly AND a spot of glue on the top bit holding it to the frame. AND I probably need to refinish it as almost all my furniture is a light oak finish. (sigh)

2) 9 square cube shelving unit for $10. Needs a fresh coat of paint - and I'm thinking gray for my son's bedroom or white for a crafting space.

3) Small 2 drawer wooden filing cabinet - which is the right wood color and the perfect small size - exactly what I need and what I've been looking for for ages. And only $35

4) Two small ladder-type small shelving units - perfect for a's small bedroom - just needs a touch of paint on one leg and a spot of glue on a couple of shelves that were recently damaged. $10 for the pair. Trying to decide if I leave them black or if I'll redo in gray.

I've got two pieces of furniture I'd like to redo for a's bedroom... his current dresser I bought six years ago and still love. But it was damaged when I bought it and I still haven't fixed it (bad mom). A spot of wood filler on the top, a little sanding and a fresh coat of paint will make it perfect for his room.

AND I've got a small wooden computer desk. Simple lines and perfect for a's bedroom. But with a black & gray bed. Black and gray dresser. Black or gray shelves (TBD). He's going to need a black or gray desk... so the plan will be to sand and paint it.

SO yeah. Plans and plotting.... and more projects than I can probably manage. I'd try bribing 'A' to tackle them for me, but with the baby coming tomorrow - he's not going to have any time either.

Sunday, August 10, 2014

Debating allowing a small amount of gluten back into my diet

I never truly believed I was gluten intolerant. After my third doctor suggested I consider going gluten free... I started trying (and failing) a gluten-free diet.  After I had my teeth pulled, I ended up going about six weeks on a liquid diet and it was fairly easy after that to try to go gluten free.

I had to test it though. I went almost six weeks with 0 gluten. And then I ate a King's Hawaiian Roll (because, lord did I miss them). And within 20 minutes I had severe cramping in my always-painful left calf.

... hmmmm....

Another six weeks gluten free, and I had to try it again.

Within 20 minutes I was asking myself what I did to my leg because it was hurting soooo bad... and I remembered, I had tried another roll but had forgotten about it.


.... sigh.....

I guess I need to be gluten free, right?

Or not?

I've been regularly doing epsom salt baths because they are the ONLY THING that consistently helps with the chronic pain in my calf.

The day before yesterday I snuck one of a's snacks - a graham cracker with chocolate and marshmallow creme filling. YUM... and when I was taking my bath later that night I thought to myself that I didn't remember any additional cramping earlier.

So, being out of all my gluten-free snacks - yesterday - I gave into temptation and ate two more graham cracker snacks. No bath last night, mildly cramped today... a little more than yesterday - but not severe cramping.

... hmmmm....

I got some groceries and couldn't resist an old favorite frozen dinner meal from Marie Calendar's - with pasta.... and yet, no new cramping.

I think that this means that if I use moderation AND keep doing my epsom salt baths - that I might be able to add a little gluten back into my unbelievably restrictive diet.   ... Oh, gosh, I hope so!

Friday, August 01, 2014

Back on coumadin

Ok. I do get it.

Coumadin (or brand name warfarin) that I'm on is hard to 'manage' the dosage. The dose for one person has NOTHING to do with the dose needed for another person. There are a million and one things that can impact the dosage that works for an individual... and none of it can be pre-measured (unlike something based on weight or body mass). The only way to know if the dosage is right is to measure the impacts on the time it takes for the blood to clot.

But seriously.

I've been on the medicine for four weeks.

Week one - they started me off low. After a week they tested me. What were my results? They were low.

Week two - they bumped the dosage up. Not by a little. By a lot.

Test me again and what happens? The results were high. Way high. Dangerously high. So what do they do? Instead of telling me to take less. I have to stop taking it altogether and get tested again before restarting.

What happens? I'm too low. (by the way, this is knicknamed the blood thinner roller coaster).

Week three - what do they want me to do? Instead of having me take a dose between the too low dose and the too high does... they have me take even more (? wtf ?)

What happens? I'm way too high... dangerously too high. Stop everything don't take anything... and then come back in.

I'm now too low (see the roller coaster effect?).

Week four - let's start over again, lets' go back to what is now the medium dose.

Now I'm too high again (go figure). Have to stop again. (seriously?)

Maybe the next time we start up again, we might chose to take LESS than the medium dose, but more than the too low dose.

I totally get that this dosage thing is trial and error. I do. But I'm getting blood drawn twice a week right now to measure all of this and it's getting a little silly to keep repeating the EXACT same steps every week. We're never going to get a good dosage at the rate we're going.

Thursday, July 31, 2014

Next steps?

I've been to the rheumatologist. We're still waiting on test results, but the doc didn't think it would be likely we would find anything.

Nuerology appointment in November.

In the meantime, I'm feeling a bit fed up with seeking answers - again... and still without any hope for an effective treatment.  Funny thing. Even with conditions with no cure - they usually at least have some ideas of treatments to help manage symptoms. I can have the same symptoms - but because I'm undiagnosed - then I'm not eligible for the same treatments.

They did suggest getting a lump biopsied to see if we can figure out what the lumps are.  Not the end of the world if we do that. It's just that my issues are bigger than the lumps themselves.

sigh.

So, my current plan is to restart the MTHFR treatments... slowly and surely. See if I can figure out if things worsen or improve.