A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. – Eleanor Roosevelt

I like this quote, which one of my aunt’s posted as a facebook status last night, and which inspired me to write this. I know a lot of really strong women, and they’ve gone through a lot of really hot water that has made them show that strength. A lot of my friends say I’m a strong woman too… and although my feeling is that I”m just playing with the hand I was dealt and living the best I can, I suppose if I were watching someone else walk my life I’d call them strong, so looking at it that way I guess I can agree that I’m strong.

A few weeks ago (I think that’s the timeline) a friend and I were discussing one of the photos I still have from my wedding with my ex husband.

The above photo is the one being discussed. It’s a (now deceased) family friend and I, who I used to be a parttime caregiver for. I would go to his house between college classes a couple days a week and make sure he had enough water, if he needed food I’d prepare it for him and give it to him, we’d sit and watch tv together, etc. The friend I was discussing it with commented that I looked really happy and healthy in the photo. I then mentioned that none of my diagnoses were made (other than the allergies I had at the time) until after that period in time. At that point she said something about how hard it must be to deal with all of it coming on so quickly… which led to me making the list of all of the diagnoses in the past 5 years that I’m about to share.

I was diagnosed with endo Nov. 2005, Fibro and my vulvar and vaginal issues in Dec. 2006, the bladder condition (IC/Interstitial Cystitis) in Jan. 2007, I was told I’d end up with lupus (due to already having signs, just not enough of the diagnostic criteria was met yet) in March or April 2007, and diagnosed with lupus tentatively in Nov. 2008, and positively in Dec. 2008.

That seems like a lot of hot water. I’d also like to say that I have had allergies since I was a child, I had asthma as a teen (which is now in remission and has been for the past 7 years almost, but is still certainly there under the surface) and I have dealt with becoming ill more easily than most for a long time (stupid autoimmune issues). Also – 4 miscarriages in 2ish years. That’s just the health and health related stuff too, it doesn’t include the stuff that has happened in my personal life (some messes I got myself into as a teen, some messes with my parents, sexual harassment (or was it abuse or somewhere in between? I don’t know how to define it, although marital rape is a good word for at least some of it) and verbal abuse from my ex, leaving my ex, and so on)…. but each thing has made me stronger. That’s part of why I say I wouldn’t change any of it. Oh there has been a lot of stuff I’d never want to go through again… but it’s made me.. well.. me. And it’s made me strong. The fact it’s made me strong and I know I can survive, and have more of a fighting spirit towards adversity than I ever expected is part of why I’m …. why I wouldn’t change it. I can’t say I’m glad to have gone through all of it, but I’m glad for how it has shaped me. That water has been very hot, but it’s also made me a stronger person, and in some ways (though I realize I can be very bitter) it’s made me a sweeter person as well, in that I am more compassionate towards others than I think I ever could have been without going through this stuff.

Advertisements

I didn’t end up with that migraine thankfully, though I have had headaches on and off since. I managed to rest enough right after I started feeling the effects to keep it from going to a full blown migraine.
I have been much more calm and at peace this time around with the miscarriage, which is definitely a miscarriage and not just a late or bad period. That is not to be confused with unemotional or unaffected, I am still very upset, but I have been able to not freak out as much. The miscarriages last year caused me to really freak out and I was in a state of panic on top of all the other emotions, then I’d panic more because of the emotions not calming down, which would cause my emotions to become even stronger, which in turn would panic me more and so on. With all that panicking I wasn’t communicating well with Johnny, either in terms of what I needed, or in terms of understanding what he was trying to say to me, I kept overreacting to him. In turn he wasn’t communicating well with me, and it was just a big mess. Also, the second time last year I was freaked out by how much I was bleeding, the way I was still having pain and bleeding, and (after I saw my doctor) that I had to go to the hospital, and that he suspected I’d need a D&C. Johnny wasn’t able to go to the hospital with me due to work, and I knew that was the case, but it had me really upset with him. (He’d been out of work a lot due to his hip and was on the verge of some trouble, as well as the fact he’s our only income and with him missing so much work his checks had been really low.) I must brag on him for a minute though…. even though he couldn’t go with me to the hospital and he and I were upset with each other he made sure to get things set for whatever I would need when I got home. He had my pjs laid out for me, he had the couch set up so I could lay there if I needed to, he had a laptop on the couch for me, and he had my spot in bed ready for me. He’d also made sure to make comfort foods available to me (the ones we had any way) and greeted me with a hug when I got home and let him know I was back. He was obviously concerned, but there were circumstances that made it so he couldn’t go with me. This time around, since I’ve been calmer, he’s not been so freaked out by how freaked out I’ve been, and we’ve been communicating better I’ve had a lot more support in person. He hasn’t said that those are the reasons he’s been more supportive, vs less supportive last time, but looking back on those experiences, and how he’s reacted when I’ve been so freaked out by other things, that’s what was going on there. This time I’ve had back rubs, lots of cuddles, him just being around for me, and understanding if I need to let it all out. We’ve also been watching movies together, and lots of cuddles while sleeping (this generally doesn’t happen due to our pain and the locations of the pain, it’s very difficult for both of us to lay in a way that allows long term cuddles). And, after I received some money that was not set up for a specific purpose and needed for bills we were able to get the new Final Fantasy video game, so I’ve been playing that quite a bit, both as a distraction and because I enjoy those games. It’s just been a …. I don’t want to say better, but I’m not sure what else to use… different (?) experience all around. Still painful physically and emotionally, but things have been different this time as far as support and it’s just all been … easier I suppose.

Edit: the reason I felt the need to brag on Johnny for doing what he did when I was at the hospital was due to the fact although we hadn’t argued per se we had some pretty major disagreements over him not going to the dr with me, then not going to the hospital with me, and neither of us were happy with the other….. so it meant that much more to me that he did it.

E had a doc appt Tuesday, he’s now on a different pain med which seems to be working better for him (he’s sleeping again, and not having to sleep as long to try to feel rested, the sleep is restful and he gets a good 8 hours almost every day so far… Thanksgiving being an exception due to timing of eating and all of that), he has a new bp med which we haven’t had money for yet, and he is to have an epi pen at all times (no money for that yet either). His cholesterol is high, so we are changing our diet some more, but there aren’t too many more changes we can make, it’s just a matter of them actually starting to make a difference… we made some huge changes to our diet about two months ago, though we’ve been eating pretty healthily over all since we got our own place about 15 months ago. When money gets tight we’ve had to go back to cheap food, but now that we have the food stamps things are a lot better. So we just need to make some adjustments and things will be good as far as diet. The other thing the doc said would generally be recommended is exercise, but with E’s hip, and the fact he walks at least 4 miles a night at work, the doc was more concerned with him not getting more walking in lol. E’s been having elbow issues lately (the past few months, but it’s gotten really bad the last three weeks or so), and the doc examined it while we were up there… he suspects some form of degenerative arthritis, though is unsure what kind, or why. There have never been injuries to that elbow, so they aren’t sure what is going on yet… we need to go get xrays done on it.
We both survived Thanksgiving… it went pretty well over all. 🙂 And E survived working Thurs night/Friday morning so that’s good too. We have a storm coming in so both of us are hurting, but we would have been anyway, me from just going out to spend an hour or so with E’s family and trying to keep myself functioning well enough for that time to be sociable, especially since it was more than just his immediate family there. It was E and I, E’s mom and step dad, his half sister, his step sister and his step sister’s boyfriend. Some friends of his sisters’ stopped by at one point too. I fixed the salad I made (not all of the ingredients had found their way to our house) and sat down in a chair, where I stayed for pretty much the whole hour we were there. I was up for maybe 1/4 of our time with his family, the rest was spent sitting down. But I did ok acting normal and came home, relaxed a bit, and E and I went to sleep. I’ve been sleeping 10+ hours almost every time I’ve gone to sleep since. I think I’ve had one nap for a couple of hours, but otherwise each time I close my eyes I am out for several hours. I’m on new pain meds, which I’m sure are lending themselves to the sleep situation as well.
I think that’s all the news here…
I’ll be talking to E at some point this weekend about the name thing I mentioned in my last post, I’ll try to remember to post about it afterwards, but my memory is affected lately (more than usual) so we’ll see… I’m just so tired all the time right now while trying to adjust to the meds. Which is both good and bad…. I’m getting lots of sleep, which I really need after all the sleep issues of the last few months, but I’m also having memory issues because of being so tired. And no, I’m not taking the full prescribed dose, my doctor and I both feel I should take the least amount possible and only increase to the full dose if I have to.
Oh, and I’m also at the point in my cycle where I’d normally be getting ready for a period, so we’ll see what happens when I try to push past it with this birth control…. I’m worried there isn’t enough estrogen, but we shall see…. that’s all playing a role in how tired (and emotional) I am right now too….

OH! I never shared my news. Last week (or the week before, I can’t remember now) I received a letter in the mail from our Walmart saying I needed to get my paperwork for my leave turned in or they were going to terminate my position. My doctor had taken over two months to even get the paperwork back to me, and I needed to find my paperwork, so I got this letter about a week after finally getting my paperwork from the doc. E and I talked about it and decided that since it’s been over a year since I went on leave, and almost a year since I was released by my doctors to return, as long as I was given a chair to sit in and a certain position (people greeter), and Walmart still hasn’t let me back, that it was just time to give up on it, especially since I have applied for SSI/SSDI now. So I’m finally free of all that drama!! 🙂

For those who don’t know me well, or aren’t in my life anywhere but this blog… I LOVE food. I have trouble gaining weight, so this isn’t usually a problem. I don’t overeat (usually) but it is one of my joys in life, and although I’m not huge on cooking, I do like to try different things.. I’m (generally) not a picky eater. Or… I wasn’t a picky eater until I had to become one. I have multiple issues that *should* change the way I eat, but they never have. For example, I’m severely lactose intolerant… like to the point that the lactaid pills you take each time you have dairy don’t help unless I take at least double the dose they say to. I no longer take those. I now take probiotics that are formulated specifically for lactose intolerance. And I have to take two of those every day to be able to eat dairy, even though most people can cut it down to one a day after the first few daily doses. If I miss days and have to start all over taking them I have some issues the first day or two when I have dairy again (though not as severe as without them). Also I have other health issues that have diets to follow to help reduce some of the pain. I do stick with certain parts of them, such as I don’t generally eat citrusy or acidic foods (this is VERY tough since I love sour and citrus foods!), but there is a very obvious difference in how I feel when I splurge. Once in awhile I can splurge (with the proper medication taken at the same time that neutralizes a portion of the acid) and be okay, but those foods will not be a part of my normal diet again unless they come up with better treatments or a cure. There is a med I can take for my bladder, which makes it so that I am more able to tolerate foods and such, it helps build the lining back up, so things don’t get to the tender part of my bladder under that lining as much and I don’t have as much pain… but uninsured it’s $400 a month (last time I checked, I’ve recently heard more expensive quotes from other friends) so it’s not in the books right now since although I’m insured now I have to wait on pre existing clauses…
Anyway, onto the main point of this post. I’ve been very nervous trying to decide how to handle Thanksgiving with my inlaws. They know how much I love to eat, and I’ve spent a few holidays with them now, so they know how I am about stuffing myself at holiday meals. This year however, I’m having to eat very differently than I have so far, and a big thing is not eating protein, so I was trying to figure out how to do this without insulting them or having to tell awkward answers at the dinner table if asked what was happening. My digestion issues really aren’t dinner table conversation lol. All of us except my father in law have had some type of job in the medical field at one point or another, so 5 of the 6 of us don’t care… but he really does lol. So I was trying to figure out if I fill them in about my medical stuff ahead of time (my MIL is a nurse, so I figured if I called and filled anyone in it would be her) or if I just say ahead of time that my diet is limited right now or what. I asked E the other day, because it was a really big concern on my mind. He suggested we bring left overs home so I can enjoy some of the foods that I won’t touch while we’re there (I’m not wanting to make myself ill here or there, but I’d rather have the pain happen here, and I can’t pass up some turkey completely…), and if they ask just say a general “my health is getting a lot worse, so I’m having to eat a very limited diet right now” type of thing, and I can mention the likelihood of pancreatitis because my MIL will understand, and she can explain later if anyone else has questions…. They do know I’m applying for disability and all, so they are aware I’m not doing well, and after my last appt I told my MIL it was likely something with my pancreas, so hopefully that will keep it from getting too awkward. However, my in laws don’t have the greatest memories for reasons I’m not going into here, so I’m not sure if she remembers about the pancreas stuff or not. I would have worried about all of this anyway, but things are somewhat tense between me and my MIL, or were last time we spoke, so I really don’t want to make the situation worse. So that’s how we’re handling that. And the same will likely be done for Christmas, though I’m hoping that maybe they’ll think to ask if there are any certain foods to include in the meal for that get together. I’m not too worried either way, there’s usually enough variety that I’ll find enough food to fill myself… so it’ll all work out on that end. 🙂 Another way I may handle it, if I’m still not past this flare, is to just take the Ensure with me that I’ll be switching my entire diet to later tonight and tell them we’ll take left overs home for me to eat when I’m back on solid food again. Either way, it’s covered. 🙂

For those who don’t know me well, or aren’t in my life anywhere but this blog… I LOVE food. I have trouble gaining weight, so this isn’t usually a problem. I don’t overeat (usually) but it is one of my joys in life, and although I’m not huge on cooking, I do like to try different things.. I’m (generally) not a picky eater. Or… I wasn’t a picky eater until I had to become one. I have multiple issues that *should* change the way I eat, but they never have. For example, I’m severely lactose intolerant… like to the point that the lactaid pills you take each time you have dairy don’t help unless I take at least double the dose they say to. I no longer take those. I now take probiotics that are formulated specifically for lactose intolerance. And I have to take two of those every day to be able to eat dairy, even though most people can cut it down to one a day after the first few daily doses. If I miss days and have to start all over taking them I have some issues the first day or two when I have dairy again (though not as severe as without them). Also I have other health issues that have diets to follow to help reduce some of the pain. I do stick with certain parts of them, such as I don’t generally eat citrusy or acidic foods (this is VERY tough since I love sour and citrus foods!), but there is a very obvious difference in how I feel when I splurge. Once in awhile I can splurge (with the proper medication taken at the same time that neutralizes a portion of the acid) and be okay, but those foods will not be a part of my normal diet again unless they come up with better treatments or a cure. There is a med I can take for my bladder, which makes it so that I am more able to tolerate foods and such, it helps build the lining back up, so things don’t get to the tender part of my bladder under that lining as much and I don’t have as much pain… but uninsured it’s $400 a month (last time I checked, I’ve recently heard more expensive quotes from other friends) so it’s not in the books right now since although I’m insured now I have to wait on pre existing clauses…
Anyway, onto the main point of this post. I’ve been very nervous trying to decide how to handle Thanksgiving with my inlaws. They know how much I love to eat, and I’ve spent a few holidays with them now, so they know how I am about stuffing myself at holiday meals. This year however, I’m having to eat very differently than I have so far, and a big thing is not eating protein, so I was trying to figure out how to do this without insulting them or having to tell awkward answers at the dinner table if asked what was happening. My digestion issues really aren’t dinner table conversation lol. All of us except my father in law have had some type of job in the medical field at one point or another, so 5 of the 6 of us don’t care… but he really does lol. So I was trying to figure out if I fill them in about my medical stuff ahead of time (my MIL is a nurse, so I figured if I called and filled anyone in it would be her) or if I just say ahead of time that my diet is limited right now or what. I asked E the other day, because it was a really big concern on my mind. He suggested we bring left overs home so I can enjoy some of the foods that I won’t touch while we’re there (I’m not wanting to make myself ill here or there, but I’d rather have the pain happen here, and I can’t pass up some turkey completely…), and if they ask just say a general “my health is getting a lot worse, so I’m having to eat a very limited diet right now” type of thing, and I can mention the likelihood of pancreatitis because my MIL will understand, and she can explain later if anyone else has questions…. They do know I’m applying for disability and all, so they are aware I’m not doing well, and after my last appt I told my MIL it was likely something with my pancreas, so hopefully that will keep it from getting too awkward. However, my in laws don’t have the greatest memories for reasons I’m not going into here, so I’m not sure if she remembers about the pancreas stuff or not. I would have worried about all of this anyway, but things are somewhat tense between me and my MIL, or were last time we spoke, so I really don’t want to make the situation worse. So that’s how we’re handling that. And the same will likely be done for Christmas, though I’m hoping that maybe they’ll think to ask if there are any certain foods to include in the meal for that get together. I’m not too worried either way, there’s usually enough variety that I’ll find enough food to fill myself… so it’ll all work out on that end. 🙂 Another way I may handle it, if I’m still not past this flare, is to just take the Ensure with me that I’ll be switching my entire diet to later tonight and tell them we’ll take left overs home for me to eat when I’m back on solid food again. Either way, it’s covered. 🙂