There is more to this, I know.

It's been a long time since I've blogged. I mean really blogged, not just posted about books. Six months actually. I thought it was time I updated everyone on how I'm doing health wise.

Firstly, I still haven't made it back to the rheumatologist for my follow up regarding the $500 worth of blood work I had done way back when. We just couldn't afford it, unfortunately. I finally got insurance at the beginning of the month so that is my priority once I heal from my surgery (I'll get to that in a bit). So I still don't have a diagnosis regarding my full body pain and other various symptoms. This is still affecting my quality of life greatly.

My psychologist took one of my symptoms, feeling like I walked through a spider's web or a hair is stuck on me when there's not, and decided I was having tactile hallucinations. She diagnosed me with major depression with psychotic features. That basically means you get sooo depressed your mind has a break from reality and you become delusional and/or hallucinate. Since this is also associated with fibro and various autoimmune diseases I'm not convinced that is actually happening to me. It hasn't gotten much better with treatment so far even though my depression has improved drastically.

The treatment they have me on now is Abilify which is also used for just depression so I do think it is helping me with that. They also have me in resilience training which has been so helpful! It's a program called E.P.I.C (early psychosis intervention and care) and I wish it was offered to people who were depressed or anxious without psychotic symptoms as well. They have taught me a lot and I'm able to deal with my depression and social anxiety a lot better now. In that way I am thankful for the diagnosis even if I'm not 100% sure it is correct. One thing I've done is create a playlist for bad days which includes songs telling me I can do this. The above lyrics are from one of my favorites, You're Not Alone by Saosin. You can find it on Spotify under the oh so creative name Songs for a Bad Day. I'll also take suggestions for songs to add.

Did I ever mention my knee problems on here? If not around Thanksgiving my knee gave out and made this sickening cracking sound. My mom actually thought I broke something it was so loud. Every since then it has hurt when I have it bent or put weight on it for too long. It has given out and made the cracking sound a few more times since then. I've tried a brace and some simple therapy I can do myself at the suggestion of a doctor at a free clinic I went to without much improvement. Seeing my normal doctor was the first thing I did when my insurance kicked in and she put me on celebrex for it. That doesn't seem to be helping much either so she is probably going to refer me to a specialist after I recover from my surgery. I did get an x-ray and that came back fine so nothing was broken even if it sounded like it.

Over the last few months my endometriosis has gotten progressively worse so that is what I'm having surgery for. I can't afford to go see the specialist I wanted to in Atlanta since my out-of-network deductible is $11,500 and out-of-pocket max is $23,000. That was really disappointing since when I signed up it only told me my in-network deductible ($0) and out-of-pocket max ($2,000) so I thought it was going to be $2000 plus traveling expenses. I don't have a quote on my specific surgery but I have heard it is $6-7,000 just for the doctor alone not counting the hospital and anesthesiologist etc. That could easily run over $23,000! So instead I am having it done with Dr. E again like I did in 2011 for the affordable price of $300. My surgery is scheduled for July 9th as that's the soonest they had available.

We are hoping I will get another two good years out of it like I did the first one. We are going to see about getting a loan to pursue embryo adoption in August. Either I will cycle next year or I won't and that will be the end of TTC for us. Then whenever my endo comes back they can take everything out at the same time. Dr. E has already told me a hysterectomy is the next step after this surgery, she doesn't want to do one now since she knows our plans regarding embryo adoption. Hopefully soon we will officially be TTC again and I can start blogging about that!

Life with Endo

A week ago one of my friends got pinned as a nurse (I hope that is the right terminology). Even though it was about two hours away, it was very important to me that we go and support her. This picture is the result of that trip. The right was taken before heading home and the left the next afternoon after I had started to recover.

Endo bloat or endo belly turns my invisible illness visible, only people who didn't know still wouldn't guess what my body is going through. It hurts to know that the only time I'll see myself with something akin to a baby bump is during a flare.

The keynote speaker at the ceremony was absolutely awful. He spoke of the healing powers of positive thinking. He also spoke of the healing powers of "looking your best" which to him means doing your hair, hails, and makeup, being thin, and possible getting some plastic surgery. Could positive thinking have prevented this? I think not. I did my hair and my nails and wore something nicer than what I normally wear but that didn't help either. In fact wearing dark wash jeans instead of my normal leggings made it worse since the waistband was not as accommodating.

All we did was drive two hours, then sit in a church for a while for the ceremony, then go to dinner and this was the result. I wish you could see how much pain I was in. We had to leave dinner early (before even ordering) because I was in so much pain despite my pain medication. It then took several days of near constant sleep for me to get back to my normal pain levels. Despite all of that I'm still glad we went.

Happy Thanksgiving!

Being a Thursday, I've got to rep my endosisters by wearing my yellow birthday outfit complete with yellow jeans. Thursdays are awareness day where you wear yellow and use the hashtags #onthursdayswewearyellow and/or #otwwy. Usually I can't participate because I stay in my PJs and don't have any yellow ones! :D

This year I am thankful for my mom, little sister, and husband who remain as supportive and helpful as possible. I really couldn't do it without them.

I'm thankful for the support I've found in a spoonie facebook group as well as the spoonie and body positive communities on instagram. It's nice to have people who "get" you.

I'm thankful for those who participate in the Daily Deal thread on the Sims 3 forums. Because of their help I now own a much, much larger portion of the store that I would with my nonexistent budget. They have taught me the tricks for minimizing costs and maximizing sim points. They are also incredibly nice and supportive for an internet forum. It feels like they really care about each other. They will even gift people store content who are having a bad day, or it's your birthday, or just randomly. In fact yesterday I was gifted a $24 world!

But most of all, I am thankful for those who have donated to my gofundme campaign. I can't express how thankful I am. Because of these donations I now have enough to get my blood work done, which I plan to do next week. I posted before about how hopeless I felt but now I have a little hope. As you can see, I am now over halfway to my goal! I can do the blood work now and the rest (if we get it) will be so I can go to a followup appointment and find out the results of said blood work. I don't have the words to say how thankful I am.

Crash and Burn

For a while now Dobby (the poodle mix) has needed grooming. Not for aesthetic reasons, but practical ones. He keeps bringing in wildflower seeds all over his coat that I then have to clean off. Unfortunately we don't have the money to get either dog groomed at the moment. Even if getting them groomed wasn't going to keep us from getting groceries I'd feel pretty crappy about paying for it when we're asking people for money. So a couple of months ago I got a dog grooming kit from amazon that was highly rated but not super expensive so I could attempt to do it myself. I've done it twice previously with acceptable results.

I've been putting it off for about a week now because I just don't feel good. My knee still isn't better, I'm constantly exhausted, my endo started flaring, etc. Yesterday I came to the conclusion that I couldn't keep putting it off because things weren't going to get better. His hair would be so long he'd be blind and tripping over it before I felt up to it. So I decided to suck it up and do it.

The problem is, you can't just pull out the clippers and do as much as you can, stop, and do the rest later. In order to keep the clippers from getting dull (and then buying new ones) you have to give him a bath immediately before hand and dry him with a blow dryer. If he does anything that might get "foreign particles" (aka dirt) on his fur like going outside you have to start over.

So I used up quite a few spoons doing all that. He wasn't being cooperative when it came to his feet which sucks because that's where the majority of seeds stick too. I'm sure it didn't help that he could tell I was frustrated and tired and in pain. Eventually I just... crashed. I don't know how to word it other than that. I told my husband I blue screened. I got dizzy, light headed, nauseous, the works all of a sudden. I just barely managed to call Josh on speaker phone and say "help" before things started going black. Or actually gray, because things don't usually go black when I start to pass out. I know he came and helped me to the couch but I don't really remember it.


Approximately several minutes later I was able to sit up and take Lupin's advice, eating a fun size KitKat left over from Halloween on the end table. It did help. I don't think my blood sugar was low, but it's not outside the realm of possibilities. I was definitely in a spoon deficit the rest of the day. Poor Dobby looks all mangy from being half groomed but I'm not even going to try and fix it for a while. Now I'm back in bed for who even knows how long. Whenever I wash the dogs I wear my swim suit so I don't worry about getting my clothes wet, and I'm still in it now. Eventually maybe I'll put on pajamas instead...

Health Stuff

I don't know if I've mentioned it here for not, but for a while now I've been dealing with flu-like body aches. At first I figured it was due to hypothyroidism, and it might have been or still could be. Last time they checked my thyroid my levels were fine and I've been on meds for that quite a while now, but I haven't seen any improvement. Other symptoms (like chills) seem to be better. Along with that I've been having an awful time sleeping because it hurts. It feels like my whole body is bruised, and it gets worse the longer I put pressure on it. So I toss and turn a lot trying to find a way to sleep that hurts the least. I never feel rested when I wake up and am often quite stiff. I also keep having these sensations where it feels like I've walked through a spider web or there is a bug crawling on me.

I went to see my primary doctor about it and they ran a few tests, one I know for lupus, but they came back fine. I was told they didn't know what was causing it and to see a specialist. My first appointment with the rheumatologist was yesterday. I was told it would be $200 which is a lot but it's important. I walk in and literally everyone else in the waiting room was at least twice my age, which always makes me feel good about myself. I'm tired of hearing "you're too young for __!"

The receptionist, nurse, and doctor were all nice though. The doctor seemed to take me seriously. I'm always afraid of being treated like it's all in my head, I'm a hypochondriac, I'm a drug seeker, etc. He asked a lot of questions and pushed on a bunch of body parts, most of which hurt. Then it became a game of "which is better, this or that" like when they show you the films at the eye doctor.

I have no idea what he suspects is going on but they gave me two injections, one on each side of my bum. I'm supposed to keep track of whether they are helping and if so how much and how long it lasts. So far I don't know because the injection sites hurt quite a bit. I think my back doesn't hurt as much, but it could be a case of my brain focusing on the new pain, you know? Body aches seem to be just as bad. The injections didn't hurt nearly as much as lupron thankfully but I couldn't sleep on either side or back and it hurts to sit too. I think I'd be okay if it was only on one side or the other. I was also given an ultrasound and I have to do a sleep study Thursday night.

On top of all that he's ordered 15 blood tests. Parathyroid hormone, Vitamin D3, angiotensin-converting enzyme, Erythrocyte Sedimentation Rate, Ferritin, Human Leukocyte Antigen B27, Thyroglobulin Antibody, Thyroid Peroxidase Antibody, Thyroid Stimulating Immunoglobulin, Vitamin B12, BUN:Creatinine Ratio, Sjogren Antibody Panel, Celiac Disease Comprehensive Panel, and Iron Saturation. I think my primary doctor was mostly going by my TSH as far as my thyroid goes, so it seems like he wants to investigate that further. I know what the vitamins, iron, and celiac are. The other stuff I have no idea.

I really appreciate being taken seriously; I cannot stress that enough. I'm glad he wants to be thorough. I'm not glad I finished my visit to find out it cost $800. Eight hundred dollars! I was expecting $200, remember, and that is a lot for us at the moment. They let me pay half but I'm sure they will want the other half before my follow up which is tentatively scheduled for the first week of December. This doesn't even include my blood work! I have to go to a lab for that. This is just not doable for us, at all. It's impossible and I'm not exaggerating. We do not have the money, we don't even have a credit card we can put it on. Since graduating and finishing his internship DH has been looking for a better job but hasn't had any luck so far. Any friends or family I'd be comfortable asking for help aren't doing much better than we are.

Plus yesterday morning I found out getting my records to send to the endo specialist in Atlanta will cost $1 per page. I don't even want to know how many pages it is, and they can't tell me until it prints. Once it prints I have to pay for it even if I don't want everything no matter how much it costs. I already knew we couldn't pay for surgery, but they will keep your records for a year. I know other people who have done fundraisers to pay for it, so once we got an estimate I was going to look into that. But I can't get the records review and estimate without any records!

So yesterday was just a bad day. Can't do anything about my endo. Can't do anything about everything else. I just hope these injections I payed so much for do help and last for a while. I feel like saying if they don't I will cry, but that's a bit disingenuous since I'm crying already. Add in the Wave of Light tonight and I'm a total mess.

Today my From Left to Write post is due for The Goddess of Small Victories by Yannick Grannec. I've read about a forth of it so far and it's really good! If I could ever sleep and feel rested enough to pay attention to a book I'd have finished it. I've only read 10 books this year because of such problems and it's so disappointing. I don't know if I'll be up to writing a post on it today. They send you the books for free because you agree to post about them on time, and if you don't hold up your end of the deal you are less likely to get books (which is completely understandable). I hate feeling so unreliable.

From Left to Write: The Underground Girls of Kabul by Jenny Nordberg

I feel lucky to have grown up in this country, in this time period, with my mom. I never felt pressured to act like my gender or give it up completely. I could play with my tonka trucks and ninja turtles in a frilly Easter dress, or ride my bike in heels. I could play with barbies and my toy kitchen wearing pants and a plaid shirt. I could cut my hair or leave it long, whichever I preferred.

I spent a lot of my teenage years with teenage boys and felt like "one of the guys" without having to discard my gender and literally become one of the guys. I spent countless days alone with one or more boys, often in their bedrooms, without it impacting my reputation. And I didn't need to pretend I was also a boy to do so! When I started dating my husband he could ask me about my sexual history (or lack thereof) directly and believe me even if there had been gossip saying otherwise.

One woman in the book states that it is the wish of ever Afghan woman to have been born a man. When the biggest difference between men and women is freedom who can blame them? I too have often wished I had been born a man but for completely different reasons. So many of my health problems throughout the years have been female exclusive. If I was a man I would not have PCOS or endometriosis. I wouldn't menstruate at all, let alone as heavily and painfully as I do. My weight probably wouldn't have shot up as soon as I hit puberty and it would be easier to maintain or lose whatever weight I did gain. I wouldn't have a dildocam shoved up one of my orifices several times a year or need multiple surgeries to burn and cut off the tissue that causes terrible pain more days than not.

If becoming a bacha posh could have saved me from this I would have done it in a heartbeat, and in that way I can understand why these girls do it. Really I think, more than wanting to have been born a man, we wish being born a woman would not be so disadvantageous. More than once Afghanistan has been ruled by groups wanting to bring feminism to the middle east, and yet so little has changed. If you think about it not much time has passed since our own country has become more female friendly. I must have hope that one day things will change for them, and for me.

This post was inspired by The Underground Girls of Kabul by journalist Jenny Nordberg, who discovers a secret Afghani practice where girls are dressed and raised as boys. Join From Left to Write on September 16th as we discuss The Underground Girls of Kabul. As a member, I received a copy of the book for review purposes.

Are you superstitious?

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Something happened to me tonight that made me think of TTC superstitions. I was wearing my white pj pants, unstained underwear, and had just gotten out of the shower when I started having breakthrough bleeding. It's also on a Saturday at 1am so I can't even call the doctor. It's not the worst possible time, but it's up there.

I remember when we were actively TTC and the superstitions we had or heard of. Wearing white underwear or taking a pregnancy test is a sure fire way to get AF. Standing on your head after you BD helps the boys swim. Buying baby or maternity items is bad luck. Sacrificing kittens to the fertility goddess is good luck. Okay, maybe not that last one, but you get the idea.

In the end I don't actually believe. When things seem to be true it's just confirmation bias. But at times like this I still find myself having little "I should have known!" moments. What about you? Are you truly superstitious, just play along for fun, or think all of it's dumb?

In a funk

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I feel like I'm in a funk right now, especially when it comes to blogging. Like I don't really want to talk about how I'm doing in specifics. I don't know why because since I started this blog having it as an outlet as been extremely helpful. I hope I come out of it soon.

 I got my blood work redone last week. My thyroid has improved but my TSH is still abnormal. Last time it was 11.75 and now it is 7.5 (normal is 0.04-4 if I remember correctly). So they've increased my meds from 50mg to 75mg and will recheck in a few months. They were supposed to run a couple other things at the same time but they didn't tell me the results over the phone. I'm choosing to think that means they came back fine. =]

I've had a lot of problems lately with nausea, especially at night but increasingly all the time. Before nausea meds were on an ass needed basis but now it's pretty much everyday. I dread taking my nightly meds because that always makes it worse and night is bad already. I tried taking them in the morning but they make me too sleepy for that. Not taking DHA and niacin helps but I need them. I've also been prescribed Gatorade for the electrolytes (or coconut water but that's gross) because I've had more problems with my restless legs. Starting to drink a 12oz bottle everyday has cut down on incidents quite a bit.

A few weeks ago we decided to give something called Soylent (it's not people) a try, but it takes 10-12 weeks to ship. I plan to do a whole post on that and why we want to try it once it gets here. But one of the good things about it is I wouldn't need to take DHA, niacin, or drink Gatorade anymore because it has all those things in it. We got some of the not so healthy meal replacement shakes from the store until then. Just to sort of get used to drinking a "meal" instead of eating. They aren't really a meal though, they're only 250 calories. That's more like a snack. Anyway some days I will have one of those as breakfast, and then last night I had the bright idea to use one as my night time pre-meds snack. I have to eat before taking my night time meds or I will throw them up. It worked really well! I didn't take my niacin or DHA because I'm a terrible person, but I was able to go to sleep fine without really experiencing any nausea. This is something I will definitely continue to do.

Own It

I love Tyrion. not as much as Snape, but he's up there. After his speech a few episodes ago I wouldn't be surprised if Peter Dinklage wins another Emmy. But as much as I love Game of Thrones this post isn't about that. It's about chronic illness.

Lately I've been trying to look at being chronically ill, at being a spoonie, as a neutral fact. Obviously being chronically ill sucks, but the label shouldn't be seen as something bad. It's not a statement of my character. It's not something to be ashamed of. I feel bad enough because of my illnesses I shouldn't let other people's reaction to said illnesses make me feel even worse.

I am chronically ill. I am a spoonie. I am disabled. No I don't work, no I have no current plans to finish my degree, no I don't know when I will get better. I may never get better, and that's not my fault. I'm not a stay at home wife, that's just a cover because telling the truth makes people uncomfortable. Well tough, I don't want to hide who I am or pretend I'm something I'm not. It's not like people won't talk anyway.

I've been out of work since 2011. I shouldn't have been working before that. I am currently trying to get on disability but that is an up hill battle. There are a lot of misconceptions about endometriosis and I am on the more severe side of things. I also have several other health problems on top of that, some of which they are able to count and some they are not. But regardless of what the government tells me, regardless of what the lawyers say, I am disabled. And that is okay. I am learning to say that with my head held high.

Where did I go?

So apparently it's been like a month since my last real post. Oops. I'm also like a weekish behind on my post about Ruby for From Left to Write. I do still plan on writing that, btw. I've not been having a great time lately. I can't even remember what's been going on the whole time since I posted last, but it probably wasn't good.

I did finally get over my flu like illness at some point. That was a pain in the neck. So yay for eating stuff other than cereal. I've been having more problems with my endo. I got AF and then I've been spotting on and off since. The pain comes and goes as well. Apparently endo has spread closer to my back because I'm having a lot of back pain now. My doctor doesn't think it's from anything else. It sucks though because heat isn't nearly as effective on my back as it is normally. We've increased my aygestin dose again and another lupron shot might be in my future. Josh thinks I should have another lap but we can't exactly afford it.

We had a spell of very nasty weather. Over the last year I've been feeling the weather a lot more than I used to, more than 26 year olds should really. One of our dogs has a storm phobia which also sucks. Parts of our city flooded but our property is fine. Not too far from here whole streets were washed away and stuff so even though the storms weren't fun we're glad we didn't have to deal with that.

My mom graduated with two bachelor degrees on the 27th. Josh kinda graduated too, but he decided not to walk. (He only has internships this summer.) So there were a bunch of events for that. My mom won two awards and he won one! It was quite hard on my body and I think I'm just now recovering. I haven't hardly done anything in my free time since the events started other than lay in bed and watch TV.

Our house had some serious plumbing problems. We had to have a plumber come out with an excavator and replace all the piping from our house to the street and also had to have some pipe in the shower replaced. Something is wrong with the dishwasher too but we aren't gonna deal with that right now because it's not as necessary. As you can imagine it's been stressful and expensive.

Then of course there was Mother's Day. This was my second Mother's Day since the loss and I expected it to be easier than the first one but it wasn't. Maybe it just takes more time, or maybe it will always be this hard. Hopefully we will eventually have other living children and the day will be more bittersweet than just bitter. My mother made things easier for me and decided her graduation dinner would double as Mother's Day lunch. That way I wouldn't have to go out that day or see my hugely pregnant sister. Her baby shower is this weekend I think but I'm not going.

I think that's everything, or all the major stuff at least. Hopefully I'll have something more positive to post about the next time.

My New Diagnosis

I had my yearly physical on Thursday and there were a couple problems. I haven't been taking my supplements the past few months like I'm supposed to so I got a wrist slap for that. When you are taking six-seven medications a day, some of them more than once, it's easy to say I don't want to take any more pills so I'm going to stop these. They can't be as important since they aren't a prescription, right? Wrong. They are important they just won't do as much damage if you take them when you don't need them or something so they are available over the counter. One of them she said if my blood work doesn't improve in six months I'm going to have to go on a prescription so just take the supplement already. I got a pill reminder box so when I go to take my meds at night they are already there and I can't convince myself not to take them or conveniently forget.

The big news though is my thyroid. My TSH levels are 11.75 when normal range is 0.04 - 4.50. They have always been normal before but I think they may have been on the higher end of normal last year. What caused such a big jump? We don't know. After doing some research I may have developed Hashimoto's which is an autoimmune disease. Basically your immune system attacks your thyroid preventing it from doing what it's supposed to. I already have an autoimmune disease and if you have one there's a good chance you will have or get another. So I have to go on another prescription for that (which you have to take on an empty stomach at least 30 minutes before breakfast).

The worst part about this is how it affects TTC. We were hoping to do a donated embryo transfer around June after my lupron shot wore off. That has now been officially canceled. Hypothyroidism can cause the FET to fail or a lot of bad things to happen if it's successful. Miscarriage, pre-e, stillbirth, heart failure, anemia, low birth weight, or brain and nervous system birth defects. You can have a healthy pregnancy but you have to be very on top of it and have your levels checked every 6 weeks. Due to my other health problems I'd probably already be high risk and this just adds to it.

At the very least we have to wait until my levels are checked again at the end of May. If they come back normal I'll be cleared and we can start making arrangements for a cycle which would take another couple months. If they don't come back normal we'll adjust my meds and wait a few more months and check again. Going by my health history this is what I'm predicting will happen. Even if I'm cleared in May I'm not sure I feel comfortable moving forward with this being such a big deal. I think I would feel more comfortable having at least two normal blood tests under my belt so I know it's not a fluke and has leveled out. So now I'm thinking late fall/early winter transfer at the very earliest, if nothing else happens to push it back. We've had a couple quiet hurricane seasons so who knows we could take a direct hit or something.

The good news (if there is such a thing) is a lot of the problems I've been having lately could be because of this. Fatigue, joint and muscle pain, depression, weakness, weight gain, sensitivity to cold (seriously I'm normally always hot but the last few months I've been super cold! I'm bundled up in my Tardis blanket right now!), thinning eyebrows (weird symptom but Josh says I have that), paleness (Josh says my paleness is unrelated lol), memory problems and having trouble thinking, dry skin, constipation, all sorts of lovely things. I could start feeling better in as little as three weeks which is a lot better than the three months I thought it would be with lupron. Of course it could take like a year but hopefully it doesn't.

It really sucks having another diagnosis, another health problem, another medication. I've already been having a bad week partly due to the symptoms above and some personal problems so my mental health has definitely suffered. I just feel so terrible, you know? But I'm glad I know now so we can at least start treating it.

I Wear Yellow For Me

I bleached my hair! You might remember in the fall I got my hair cut and the stylists said they wouldn't even try to get the red out of my hair. Well I decided to try it myself, and they were right lol. I bleached it twice and the bottom where it was the reddest and has been red the longest is still a strawberry blonde (a little lighter than the picture shows). I decided to go ahead and do it now for a few reasons. First it's endometriosis awareness month so no better time to have blonde hair, right? Second I'm on some super strong pain meds so now is when my neck arthritis would hurt the least. It still bothered my neck and shoulder obviously, but not nearly as much as when I tried to color is myself 6ish weeks after getting it cut. I got some purple I'm going to do one last time in a few weeks and once that fades I'll be going back to brown.

I have that dress in the picture which is kind of yellowy tan, some yellow skinny jeans, and a black and yellow floral shirt I've been wearing plus yellow nail polish. I did have someone ask about all the yellow recently but it was my little sister lol. She already knows I have endo so not much awareness raised there. It's hard to raise awareness though when you never leave the house! I also made myself this bracelet which has yellow for endo, teal for PCOS, and pink & blue for infertility/miscarriage. I am trying to wear it everyday this month. So far I've only taken it off to shower so I won't have as many opportunities to forget to put it back on!

I saw my therapist on Monday and we talked a bit about how my plans never seem to work out. I've been feeling like there is no point trying to plan anything if it's just going to not happen anyway. I've been feeling especially bad about always cancelling when we have plans to go see my friend who lives two hours away. My mom was asking me when I'd like to reschedule our visit for and I told her what's the point I'll just have to cancel again. I wish we could just spontaneously go one day when I'm feeling pretty good but it's just not possible. If I'm feeling okay either her, her husband, my husband, or my mom are busy. Talking about it helped though because she pointed out I'm probably hardest on myself. My friend probably isn't as frustrated and angry with me over it as I picture in my mind. She understands. But it's still hard.

My next lupron shot is supposed to be anytime now but they haven't called me about it yet. They said they'll call me whenever it comes in instead of me making an appointment. Tomorrow is my birthday and I was hoping it wouldn't be until after that. I don't know if the side effects will increase again and that would be a terrible way to spend my birthday. So that prayer seems to have been answered at least!

Endometriosis Awareness Month

Today is the first day of Endometriosis Awareness Month! Last year I posted an image for Endometriosis Awareness Week which was the first full week in March, but this year I am hoping to be a bit more involved. =] There is a daily photo challenge on Instagram I will be participating in (or at least attempting, I have a bad track record for actually completing month long challenges). I'll also be cross posting on Twitter but because of that pesky word limit you wouldn't be able to read the whole thing usually. I am hoping to do a few endo related posts on here, or at least including the topic in my regular Wednesday posts when my health allows. I hope to post articles about endo on my Facebook Page a few times a week but the last few weeks have shown I can't plan ahead too much. If anybody has any questions about endo or how it has affected me, I would love to answer them!

Last week I found out unexpectedly that I would need dental surgery which took place on Thursday. It's kind of funny actually, last Thursday I went to the dentist because of severe pain in my back right bottom tooth that started Wednesday afternoon. It was infected so they put me on antibiotics and scheduled surgery for this past Thursday (so a week later). The funny part is last Tuesday I had blood work done, and after I left the dentist they called letting me know my white blood cell count was elevated so I probably had an infection! If only they would have gotten the results sooner maybe I could have started the antibiotics before it had gotten so painful. So that's why I missed the past two Wednesday posts. I actually had a whole post written up in my head about my perfect plan for the next six months or so, and how I've recently realized it has no chance of happening, but the drugs they've put me on have kept me knocked out most of the time. I'm actually fighting sleep now. Yup, another post about how I should just stop bothering to plan things lol.

Anyway along with some other things not happening financially as I had hoped, we've now also had to pay out of pocket for this surgery. Since I was put under general anesthesia and everything and they ended up having to extract the infected tooth it won't be cheap. This throws a wrench into my plans to hopefully get everything worked out with the clinic to do a donated embryo transfer in June or July. I was really hoping to do it mid-June so we would find out around my old due date. That way the sting of that day would either be lessened or a failure would coincide with another hard time instead of adding another bad day to my calendar. Now I just don't know if we can afford it. I just don't know.

I feel like I'm going to start crying any minute so I'm going to wrap this up. Lord knows I've written enough already. My posts are always so long! My paracord bracelet promotion is still on going. I like making them, it's comforting. We could of course use the money now as much as ever. I haven't sold a ton of them but I appreciate each purchase more than I can say.

Man Plans and God Laughs

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The picture isn't really related, but I thought it was funny and couldn't find one that was related that I liked as much. Last week I talked about my plans for the next couple of weeks, then promptly got sick and didn't do anything. Josh went to the doctor and they said he had a sinus infection. I didn't go to the doctor because I don't need excuses for work/school like he does, but I figure I had something similar and suspect I've developed bronchitis (which I have a history of). I planned to talk to the doctor at my blood work appointment yesterday but she wasn't in yet, just the nurses. There have been a few times I really could have used an inhaler but I've been managing okay with over the counter stuff and lots of cough drops. If I haven't noticed a pretty big improvement by my appointment next week it's definitely something I'll bring up, but other than getting an inhaler there's not much a doctor can do anyway.

So we didn't do anything for Josh's birthday, we didn't do anything for Valentine's Day, and we couldn't go visit my friend for her birthday. I figured out yesterday I've known her for 18 years! That is so crazy. There are people in the military who were born after we met. That's 69% of my life. I don't feel old enough to have known someone that long. I'm blessed to still have her in my life even if we can't spend as much time together as I'd like.

Early early yesterday morning (like 3am) I started having a LOT of pain. It felt like it does during the heaviest part of my period. I didn't even know if I was going to make it to my blood work appointment. TMI for a second: I haven't had anything more than spotting, but a lot of CM so I feel like my body is trying to have AF but there just isn't any lining to shed. That's good because there's not supposed to be. Yesterday was CD42 and when I started bleeding last time it was 35 days after my lupron shot so it's been about the same amount of time. It's really weird because I've never been this "regular" in my life without the help of provera. Anyway the good news is because I was in so much pelvic pain I could hardly feel it when they stuck me three times and dug around for a good while each time before getting all the blood they needed.

If you follow my Facebook Page or my Instagram (which you should) you've seen already that I've started doing something I'm calling puppywearing. It's like babywearing, but with puppies. Our dogs, Dobby especially, love to be held when I'm at the computer. Dobby likes it when you cradle him like a baby. If most poodles are like him I can understand how they got a reputation for being spoiled! I don't actually own a wrap or sling or carrier and can't really justify the purchase, but as long as I'm sitting down zipping him up in my hoodie and tucking the bottom under him seems to work pretty well. The other day he fell asleep that way and it was so cute! If this makes me one of those crazy people who try to turn their pets into children because their desire to mother is so strong then I'm okay with that.

Endometriosis Awareness Coupon

Found out today shipping went up 25¢ so I'm starting this promotion early! All bracelets are on sale, not just the endo ones. Proceeds go towards my treatment and hopeful embryo adoption. If it's not something you're personally interested in it would mean a lot if you would share it with those who might be. Here's a link to my shop so you don't have to type it in. 

The Spoonie Olympics

I'm sure everyone knows that the Olympics are taking place right now. I feel like I'm competing in the Olympics myself, only instead of a gold medal doing well means surviving until the finish line.

For those not aware, people who have chronic (often invisible) conditions are called spoonies in reference to the Spoon Theory. The basic idea is that everyone has a certain number of spoons. Every action you take uses up a spoon, until you have none left and are stuck in bed unable to do anything. Healthy people usually have enough spoons to not worry about it, but sick people have a severe lack of spoons and have to use each one wisley.

February is always a busy month around here. I wrote in my last post about attempting to start being more active by using my peddle exerciser and learning I wasn't up to that yet. This was the beginning of a chain reaction and an even bigger mistake than I thought because I had no time to recover. That was on a Tuesday. Thursday I had a therapy appointment that took a lot out of me. I had to come home and take a four hour nap and didn't get out of bed much the rest of the day or Friday.

Saturday was Little Sister's birthday and birthday party. Thankfully her birthday fell on a Saturday so we didn't need to celebrate twice. I have mentioned being anxious about this but overall it went better than expected. I'm not sure everyone realizes, but those with chronic conditions learn how to fake it. There were moments when the facade came down and I grimaced and such, there were times when I took a moment to myself, but I don't like calling attention to my illness and I think I was successful. My friend J's son was there and he wanted to go play Candy Land in a back room right at the time I needed to get away which was perfect. My friend R and I worked out a hand signal in case I needed to leave but we ended up not needing it. I had to bring out the big guns pain med wise but I have been saving the few I have left for situations such as these. There were enough people there that I spent very little time around my older sister or her DuH so that worked out great. Afterwards I slept for over 14 hours and am still recovering.

Today is my husband's birthday. We are going out to dinner tomorrow as he has a late meeting today, but not to anywhere fancy. Friday is of course Valentine's Day. I don't think we are planning to go out anywhere but I got us subscriptions to Star Wars: The Old Republic and I know he will want to play together as much as I am able. We have played a bit together already and I can tell my reaction times are suffering. As a healer that can be a bit problematic and stressful, but he understands and isn't angry when he dies. I think I'm harder on myself in that regard.

A week from today is my friend J's birthday. They live about two hours away so we plan to meet halfway on Sunday and go to dinner at McGuire's which is one of our favorite places. Traveling is hard for me so I expect I'll need a lot of time to recover from that. R's birthday is the 26th and normally I'd like to get together and do something but I know she won't expect me to if I can't. My BIL's birthday is around there too but I refuse to celebrate it anyway.

I also have three doctor appointments, one on the 18th, one of the 25th, and one on the 3rd. I need to call and reschedule one I had to miss so that could be four doctor appointments depending on when they can get me in. My second Lupron shot should be around the beginning of March as well but I don't have an appointment, they are just going to call when it comes in. My birthday is the 6th and I have no idea what we are going to do for it. Possibly nothing more than cake at home if I'm not well enough to do anything else.

Thankfully that's it for a while. They say what doesn't kill you makes you stronger, so after all I've been through I should be strong enough to get through everything. My goal is to not be completely bedridden again by the end of it, but I think it's definitely a possibility. We will see if I have enough spoons for this. Funnily enough, our dog Dobby found a plastic spoon and was attempting to eat it while I was writing. No spoons for you, I need all the ones I can get!

Two Month Anniversary

Yesterday marked two months since my lupron shot! Hopefully this means the worst is behind us now. I get my second shot next month, I think right around my birthday (the 6th), and I'm hoping it won't be a repeat of my first month this time around. It's already in my system and the baby maker has been shut down so I shouldn't have to go through that awful transition phase, right? Lord I hope so.

As I mentioned in my punday post things are ever so slowly starting to improve. I finally stopped bleeding at the end of January which was a huge relief. Since then I've noticed a slight improvement in pain. I'm having less moments where no matter what I feel like I'm going to die (or hope that I would already). I've spaced out my prescription pain meds a bit but still need 800mg ibuprofen on top of that. I'm halfway through a book which is awesome because before I felt so terrible all the time I couldn't concentrate on reading. I've sat out the last few From Left to Write books but finger's crossed I can sign up for the one in April.

Little Sister's 15th birthday party is on Saturday and I am a bit worried about that. Anytime I come out of sloth mode I pay for it later. Yesterday I decided to use my pedal exerciser for two sets of 15 minutes at a very relaxed pace and can tell it's definitely taken a toll today. I'm quite introverted so being around people can be exhausting all by itself, never mind doing stuff. I've finally gained some ground and I'm afraid of backsliding. Also as I mentioned before Older Sister will be there and I'm not looking forward to that. Josh's birthday is three days later but I think we're just going to go to dinner so it shouldn't be too bad.

My newly pregnant friend that I wrote about before is still doing well. They officially have a heartbeat! I'm still excited for them and not feeling jealous. This is the best I've taken a pregnancy in years, actually. I hope they are able to come to the party but I also hope I don't accidently let the cat out of the bag since they haven't announced yet!

If you've visited the blog recently you may have noticed something is wrong with my blog design. There is some kind of bug with the template and it won't let me fix it. I'll basically have to start over and put a new generic template on the blog and then edit it to a new design. I'm not sure when I'll feel up to doing it but this is just a heads up in case you visit and it looks funky lol. I think I'm going to change it from blue and pink for babies to orange since that goes with my blog name.

Good news for once!

I recently found out one of my very good friends is pregnant. Normally this would be bittersweet at best and soul crushing at worse, but not this time. I'm beyond happy for her (and her DH), and that's it. When she told me I didn't have any of those normal "I wish it was me" feelings. It put a smile on my face for the first time in well, a while. But I was also scared, and still am a little. Unfortunately their journey has included a few losses and I would be heartbroken if that happened again. If I would be heartbroken, if I already feel like I love this baby, how much worse it would be for them is unfathomable. But so far everything is good. HCG is rising appropriately and they should get their first ultrasound in a few days.

While I am still extremely happy for them, I am beginning to feel a bit off. Like it's wrong for me to be so excited for them when I feel so negative about my sister's pregnancy. My little sister's birthday is coming up and I know she will be there and I'm dreading it. The last time I saw her she wasn't even showing yet and it was a bad experience all around. I'm actually kind of grateful my endo hasn't improved yet so I can use that to get away for a bit if I need to.

On the other hand, I feel a renewed desire to get pregnant myself. That desire is such a double edged sword, as with it comes hope that is so easily crushed. I found myself looking up information on the embryo adoption program we planned to go through last year for the first time in months. Checking to see if the prices were still the same, if there was a longer wait time, stuff like that. I questioned whether I should call them and see if there was anything we can do now. I come off lupron in May, maybe if we started now we could transfer soon after! But then I had a reality check and realized I was definitely jumping the gun. I don't even know if this will work, and I can't try again until my endo gets better. I just want my baby to grow up with my friend's baby. I wanted the same thing with my other best friend when she got pregnant and now their son is three and a half. I'm scared the same thing will happen and I'll be left behind again.

Realistically I'm still feeling all around terrible and in quite a bit of pain and haven't even been calling the people I'm supposed to call. Like the doctor to push up my appointment after being in the hospital, or more lawyers to see if someone will represent me in court. So I doubt I'm up to organizing an embryo adoption either. And I'm not sure I want to try and do that while dealing with a disability hearing anyway. So right now the plan is to wait until I can come off my pain meds and reevaluate then. Maybe I can be pregnant or at least on my way there by the time her baby shower rolls around.

Good Riddance 2013

2013 sucked. As did 2012, and 2011. 2009/10 were decent, either because not too much bad happened or there was enough good to even out the bad. All I dare hope is for 2014 to be more like that. They say what goes up must come down. Do you think the opposite could be true? That what goes down must come up? Like a bouncy ball let go to drop on the floor and then bounce back into your waiting palm. Then for Heaven sakes put the ball away! I don't need to be up, I just need to be level. Not down. Is that too much to ask?

I think the worst may be over when it comes to lupron side effects. I still have hot flashes, joint pain, mood swings, etc but my pelvic pain has eased somewhat. It's not better, it may not even be getting better yet, but the extra pain caused by the lupron has passed. I can get out of bed so that's an improvement. I'm seeing more chest pain flares though which sucks. Two steps forward, one step back.

My depression is getting worse. My mother has nicknamed me Killer of Dreams. I had an initial appointment with a health and family counseling group earlier this month. I saw a psychiatrist on Christmas Eve and had a terrible experience. He was very dismissive of my problems. I'm on a low dose antidepressant already for chronic pain so he just doubled it to the lowest dose used to treat depression. Of course it makes me so tired I'll sleep for 17 hours after taking it. I've just been taking the new amount every other day and hoping my body gets used to it soon.

I have an appointment with a therapist on the eighth so I'm hoping that goes better. There are so many things bothering me right now I don't even know where to start. If I have another negative experience I've already had someone else recommended.

My disability appeal is due soon and I still don't have a lawyer. I've pretty much been on bed rest the last month and haven't felt up to calling around to the other lawyers. Even if I can get out of bed now I still don't have the energy to explain everything and try to persuade them to take my case. I'll probably end up just filing myself (or getting Josh to do it). With or without a lawyer I'll probably get denied again. A larger percentage of cases are denied at first appeal than even initial application. Gotta weed out those not super serious, I guess. Persistence seems to be the key.

I hope all of you are doing well. Congrats to anyone who has gotten a BFP lately! Hugs for those who haven't. Wishing everyone a happier 2014.

My new normal?

Yesterday I got out of bed one time. I've started keeping some pain meds on my bedside bookshelf and by the couch because I'm always at one or the other. Yesterday I ran out by the bed so I had to get up and get some more. I took that opportunity to use the restroom and microwave some mac and cheese. Yes, I only used the restroom once yesterday. This is bad for two reasons: 1. I'm probably dehydrated and not drinking enough and 2. I think you can get a kidney infection that way. I meant to get up again to take a shower but never felt up to it. Taking a shower is now an arduous task. How sad is that?

My mother's birthday is next week. All she ever wants is to go out to dinner with her family. We don't have many traditions but this one is very important to her. It's already not ideal because I refuse to spend time with my sister's terrible husband (or her if like our last encounter she insists on complaining about her pregnancy the whole time). I hope things start improving fast or I find someway to do this for my mother.