Family Planning (NSFW-ish)

Okay folks, there will be some basic biology talk in this post so if you don’t want to read about any of that, I’ll see you next blog ūüôā

_____________________________________________________

Ah yes, birth control. That thing you wanted until you turned 30, then immediately wanted to burn so you could start a family with the guy of your dreams…just kidding, this isn’t a sitcom. I was put on the pill at 16 because I had periods that were brutal. It turned out that I had really bad ovarian cysts. I was on the pill from 2002 until 2014. I wasn’t on anything for a little over a year. Then, after a year and a half (or so), I got an IUD. There is my birth control journey in a nutshell. There were different types of pills involved, but because of my cyst issues (and what turned out to be endometriosis) I needed high dose oral contraceptives. I went off for a little over a year because I wanted to see if cysts were still an issue, and while they were, the endometriosis was really more of an issue than the cysts were. At the time it wasn’t diagnosed, though. Once I kicked the pill, my doctor felt comfortable with the diagnosis. So how does this all fit into Behcet’s?

For starters, there is an awkward give and take with the whole birth control issue. Most of my medications are contraindicated in pregnancy. Some are actually so bad for pregnancy, I had to prove I was taking reliable measures to avoid becoming pregnant. Of course my family history of blood clots, and having vasculitis, meant I was pushing the limits of estrogen containing birth control pills. My doctor had told me that being on birth control pills that contained estrogen, was a surefire way to get a blood clot.

I really didn’t want a¬†blood clot.

I was able to forgo birth control entirely because I had failed to get control over periods using non-estrogen containing oral contraceptives. They had wanted to use an IUD, but I was super afraid at the time. I also knew that I wanted children in the next five years. At the time I was with someone who had lab work that showed issues, issues that would make conception without intervention highly unlikely. The chances were low enough that, when presented with the numbers, my gynecologist was comfortable enough with me going sans birth control, despite being on medication that usually required me to be on birth control.

Score one for male factor infertility.

I don’t do drama, so for the record, my ex did go on to have an adorable baby boy with his gorgeous girlfriend. While we were together I was informed¬†given the information at my disposal, that we could not have children. Indeed, I was able to stay off of birth control for well over a year, without a pregnancy.¬†

Now, for so many years the goal of life was to avoid pregnancy. Let’s me honest, for most of us that’s how it goes. We try to avoid pregnancies, until all of a sudden we realize we¬†want kids. Some people are lucky enough to avoid pregnancy, then become pregnant, when they find it convenient. Other people find themselves getting pregnant when they didn’t plan on it, or struggling to get pregnant at all. Then there are the weird sick women out there, who have the added benefit of having to seriously plan out pregnancies because of illnesses and medications.

Doctors have had various recommendations for me. Some have looked at the research and been comfortable with my proclamation that I want children some day. For many women with Behcet’s, pregnancy brings a relief from symptoms. Doctors don’t really know why, but Behcet’s symptoms, and even the disease itself, tend to lessen during pregnancy, and even shortly afterwards. Of course some women have worsening symptoms during pregnancy, and more have issues following the birth of their children, but there was hope.

Other doctors have acted like I’m insane. The medications alone make it a really risky idea. I would have to stop certain medications for a certain period of time, but also be able to start pregnancy safe medications within that time, to keep all my symptoms in check. A seizure during pregnancy would be really bad. Gastroparesis makes me nauseas and struggling to feed myself adequately, how in the world will I be able to nourish a growing baby? They point at the unknowns genetically in terms of how many people in my family have autoimmune ailments. Of course there is no¬†guarantee that I’ll be passing anything along.

The rest fall somewhere in the middle, which I feel is the right place to be. I definitely don’t expect to have an easy go of it, but I would like to have at least one or two children of my own. I would love an adopted child, or a stepchild, just as much, but there is something about a biological child that does call to me. I’ve definitely considered IVF with a surrogate, but that is an expensive route. It’s also the safest in terms of what would be best for the baby. (Think about it, my body does a poor job of keeping me alive, entrusting it with a fetus seems terrifying to me.) A surrogacy would also mean I could stay on a lot of my medications, or at least go back on medications sooner. (Some medications you cannot be taking because they pass along birth defects via the egg, so I would have to stop those prior to egg harvesting.)

Is this a fun read or what…

I know my best chance at having a healthy biological child, is via a surrogate, but it doesn’t make thinking about it any less daunting. I mean, I was married, I’m in the process of getting a divorce, I’ll be 32 in April…and there is a timeline on fertility. I didn’t do myself any favors with the chemo. (I still don’t know if there was damage to my eggs, but again, that’s not something I can really know without specific fertility testing. My insurance only covers fertility tests if you’ve been trying to conceive for a period of time without success.

I’m pretty sure I don’t meet the qualifications of trying for any period of time, given the fact that I’m painfully single.

Another issue for me is that I did have early stage cervical cancer. They removed a pretty decent size of my cervix, and the location has made it more likely for me to experience issues with premature labor. So, you know, as if it weren’t enough to have Behcet’s with heavy GI involvement including gastroparesis…I had to go and get cervical cancer, too.¬†Don’t get me wrong, I am beyond grateful that it was caught early, and¬†that I only needed local surgery instead of a more invasive surgery and chemotherapy. It just would have been nice if I could have avoided cancer all together.

Doing six months of chemotherapy, then getting diagnosed with cancer? Yeah, that’s only something that happens in my life.

This is another rambling blog, but today was infusion day, and I’m in that weird headspace of sleepy, but full of vitamins. I hope I find someone someday who can love me, illnesses and all. I also hope that they want children (or already have children) and are supportive of whatever pathway to parenthood we choose together. It may not be conventional, but that’s okay. Right now I do have an IUD. It was placed before I was diagnosed with cancer, and I’m thrilled with it. It controls my endometriosis issues, and I don’t know it’s even there. There isn’t a worry for me regarding pregnancy, which is important still with all the medications I’m taking. With my nausea issues, vomiting, and malabsorption, it was time to get something that didn’t rely on another pill I would have to remember to take. Plus, no estrogen!

Advertisements
Family Planning (NSFW-ish)

Dieting With Gastroparesis?

Okay, so that phrase seems counterintuitive, right? It is…but it isn’t. During chemotherapy I gained a substantial amount of weight. I needed to gain weight, but not as much as I did. I went from 120 pounds to 195 pounds. Ideally I’d love to hang out around 145. Currently I way 170. That 35 pound drop? Yeah, I got myself down to 190, but the other 30 is from gastroparesis.

So how the hell do I diet. I mean, I want to lose weight, but not because I’m¬†not eating.

There isn’t really an easy answer. I eat what I can, when I can, and I try and make sure that the food I’m eating is easy to digest, but nutrient dense. It isn’t easy. Protein bars, protein cookies, etc., are all options, but sometimes the protein is really hard for me to process. Lately I’ve been doing toast with some butter and honey.

Today I’ve had two pieces of toast with honey, and two little pieces of soft fresh mozzarella cheese.¬†

That isn’t enough. I also wasn’t supposed to be eating the cheese, but I had a moment of hunger, and just went with it. The problem is that I’m so full, and haven’t had much to drink at all. That’s the other issue with gastroparesis (for me) is that I often find myself choosing between food and water. I know I need water, but I also need to keep my blood sugar up. Again, I go to honey. I have hot lemon water with honey. I think I’m just hoping the honey will keep my blood sugar up, while also tasting good and giving me some calories.

Yes, I want calories. 

This is where people can go down very different roads. Some people, like myself, want control over intake and output. I want my exercise and calories, to be well matched. I don’t want to lose weight too fast. I know that I need to keep muscle on, and burn fat. If I’m losing too much weight, I’m losing muscle, and telling my body to store fat. Others go down a very different path. They see the massive weight loss gastroparesis is providing, and they lean into it. It becomes an excuse for intentional disordered eating.

If you have a digestive order, and you’re using the symptoms or medications to help lose weight¬†intentionally, please talk with your doctor.¬†

Some conditions and some medications cause weight loss, but you should be working with your doctor and your nutritionist to mitigate the impact of this. Being sick is not a good way to lose weight. I was 120 pounds because of gastroparesis. I gained weight during chemotherapy because of the drugs I was getting, including steroids. I also developed a ravenous appetite for sweets. I would eat a little bit, all day, and I could process the gluten free vegan options…so that’s what I ate.

Look, I’m not going to rationalize my weight loss or gain. The reality is I should have been receiving better care¬†before I got to 120 pounds, but I honestly didn’t even realize I was that thin. I was so focused on the symptoms, and because I didn’t¬†feel hungry, it didn’t dawn on me that it was an issue. Friends would make comments, and eventually I realized that I was wearing dress sizes and pant sizes that I had¬†never worn. Sitting in a dressing room, holding a small and extra small, when you’re as tall as I am, can be a sobering moment. I remember thinking that I’d wanted to lose weight, but being utterly confused how I’d gotten so thin.

I don’t get hungry, so I try to be mindful of my¬†nutritional and caloric needs. I am 100% sure that I’m deficient, but I’m not negligent.

I get infusions of vitamins and amino acids, because I cannot take in these specific vitamins and amino acids, by mouth. I’m also dealing with periodic malabsorption. I have ulcers in my intestines that prevent adequate absorption, and I also have sections of intestines that just don’t move properly, again, contributing to malabsorption.

It’s funny because I have moments where I’m just matter-of-fact about my gastroparesis. “No thank you, I can’t eat. I have gastroparesis, so I’m still full from breakfast,” she says at 8pm. Then there are other moments, where I get defensive. I’ve been told that not eating sufficiently, for x amount of days, makes me anorexic. There was a heated exchange because anorexia has a physical impact on your body, but ultimately it’s a disease of the mind. Gastroparesis can lead to anorexia, or contribute to anorexia, and severe enough anorexia can even lead to gastroparesis (or at least issues similar.) Someone who has gastroparesis, and loses weight because of it, is not automatically anorexic.

I want to lose weight. I do not want to use my illness to lose weight. I acknowledge that my weight loss is unhealthy, and I do everything in my power to slow down the weight loss, as well as to supplement nutritionally and calorically. 

We can go back and forth for the rest of our lives, but ultimately the important thing is achieving health. I want to be able to work out. I want to be able to eat salads again. I want so many things. The last thing I want, is my gastroparesis to decide my body shape, and for me to have to go along with whatever the disease decides.

Dieting With Gastroparesis?

Vitamin Infusions, Movie Plans, Poops (Literally Talking About Poops)

So I was able to get my next round of vitamins today, which was good because I was seriously dragging. I went to bed last night at 7pm, was asleep before 8:30, and could have slept longer this morning had my dogs not made it clear that they were ready to get up. Still, I got a solid 12 hours or so. I had planned on seeing a matinee today, Star Wars, but still felt too sluggish to make it. (My infusion was at 11:30, and the movie started at 3:40. I had hoped, well let’s be blunt, that I would need to poop after the infusion. Sadly, I didn’t get that urge, which was something I had gotten the last two times.

Living life chronically constipated, kind of really sucks.

I used to have issues with diarrhea, and I remember always thinking anything had to be better than running to the bathroom all the time. Then I learned how much not being able to go, seriously sucked. Turns out when you’re constipated, but can only form a partial obstruction, you get diarrhea around the backed up stool. You don’t know fun, until you have the pain of severe constipation, with all the added horror of having diarrhea (sometimes even in your pants.)

We haven’t found a good option for handling this, because I’m a walking contraindication to conventional treatments, and a walking example of all things that can cause diarrhea. When someone can drink half a bottle of Miralax, and not go to the bathroom, you know there is a problem. I recognize that moving more would make me go easier, but I cannot move as much as required because I’m so fatigued and nauseas. Lately I’ve decided the gas is worth it, if it gets things moving, and I’ve started eating dairy. Dairy, for whatever reason, seems to aggravate whatever is causing the GI bleeding.

So, do I want to bleed but go, potentially bleed but not go, or not bleed but definitely not go?

Life is fun.

Back to the movie…with my luck I’ll go, but then suddenly get the urge to poop. This isn’t an easy thing to deal with. First, let’s say I¬†do actually have to go. Going in public isn’t easy for me, nor is going after being stopped up. There is also the risk that the urge doesn’t result in actually going, but does cause bleeding. Biggest issue, for¬†me, is that I’d be buying a ticket, and missing some of the movie. This is Star Wars, and I am a nerd. The only reason I haven’t seen it yet was because of how sick I was feeling, and how sick people in general have been. I can’t imagine sitting through an entire movie with a mask on, so I had to wait.

Tonight, at 7 or 10pm. I’m not being hard on myself, though. I fatigue, nausea, or pain, become too much, then I’ll see if I can see it tomorrow. This is an autoimmune disease. My body is attacking itself (or so they theorize anyhow). How I handle it is how I handle it, because my disease is¬†my disease. What works for me, may work for others, but ultimately each of us needs to figure out what our treatment plan looks like.

During chemotherapy I explained to my mother, that chemo patients are all different. Even two people receiving the same drugs, can have different sets of symptoms. I lost my hair, largely because I was severely malnourished prior to chemotherapy, and I had tapered off very high doses of steroids. The combination caused hair loss, including bald patches, ultimately causing me to decide to shave my head. I also had major issues with nausea. This was likely because I had severe nausea prior to chemotherapy, and had begun to eat different foods during chemotherapy. I also was much more susceptible to the drug than we had expected. I ended up with very low red blood cell counts, platelets, white cells, everything. The doctors were floored, and I was given less of the drug during my next infusion. I had been expected to get an increased dose, but that would never need to happen.

So hopefully I wil have more energy, less nausea, and less GI pain. Hopefully I will go see a movie that I have been waiting weeks to see. Hopefully I will be in a relatively empty theater, so I don’t need to wear a mask the entire time. Hopefully the people working won’t give me grief over my hot water bottle, so I can hopefully get abdominal relief, and back pain relief, through the duration of the film.

May 2018 is the year of “hopefully,” and I’m¬†okay with that.

I told myself 2017 would be the year of treatments, and remission. I set myself up for a let down. So, while I’m hopeful that IVIG will provide me with good results, and less side effects, I recognize that nothing is 100% certain. I can have hope, without losing all rational thinking. Hopefully IVIG will work, and hopefully I’ll need less assistive devices. Hopefully I can get back to working. Hopefully I can throw myself into self improvement, and socialization.

Tonight it starts with hopefully seeing a movie. Tomorrow is another day.

Vitamin Infusions, Movie Plans, Poops (Literally Talking About Poops)

I’ve Always Wanted Fuller Lips…But Not Quite Like This

After a few days of stress, and feeling like garbage, I was pleasantly surprised to be feeling pretty good after taking a couple of naps. Everything was going fine, until my lip started to tingle. I was annoyed when the tingly feeling shifted to a burning. Investigation showed some redness, and by then my lip was basically numb. I nonchalantly mentioned that I thought I was getting some oral ulcers, before asking if my lip appeared swollen.

Within five minutes I went from how I usually look, to having a pretty seriously swollen top lip, numbness in both lips, numbness up my nose, and some selling in my cheek. Even my tongue was numb in parts, and my hard palate was almost totally numb.

It has happened before, but I just assumed it was related to the Flagyl I’d been on at the time. Now I have to wonder if there was something else at play. After an extraordinary high dose of Benadryl, things settled down a bit. My lip was (and still is) sore, as are parts of my lower lip, and tongue. I did have some increased swelling again this morning, so I took more Benadryl. My primary care doctor is phoning in an Epi-Pen just in case, and I have an allergist appointment on the 5th of February.

I laughed it off, but the person I was with at the time was slightly less amused. With how quickly the swelling came on, and spread, he had legitimately worried that he’d have to rush me to an ER, or even call an ambulance. I can look at the situation logically, and appreciate his fears. Looking back on it, I’m lucky. The numbness moving down the roof of my mouth, into my gums, and even parts of my face? That’s serious. If it had moved down my throat, and I’d lost the ability to breathe, it could have been deadly.

For years I was told I didn’t have nice lips. (I have perfectly normal lips, just for general information.) When I’ve had instances where my lips tingle or even puff up a little, I just chalk it up to blow flow, and feel grateful. It took this level of severity, to realize the periodic episodes of hives without a cause, and now this, are definitely a sign that my system is not in synch.

My theory is twofold. The first scenario is that my immune system is screaming intruder as though an allergen is present. The result is a flurry of histamine and other responses, leading to hives and/or swelling. The second scenario is that I’m actually having angioedema, and not an allergic type reaction. There have been a lot of cases in which someone has an autoimmune disease along with angioedema or mast cell activation syndrome (MCAS). I don’t think it would be MCAS, as I don’t have (at least not yet) symptoms of anaphylaxis. What I do have, are these episodes where it seems as though the blood vessels in my lips, mouth, and perhaps cheeks, all want to allow the area to expand.

I can’t know, of course, and I doubt doctors will have an easy answer. I will presumably be getting allergy testing done, but with the gastroparesis, I’m not expecting a huge change in my diet. It would be nice to know for sure what I should avoid, and extra nice to know if I am truly allergic to several medications, or if my body was just going rogue because I was ill.

Alas, I can save money on lip injections, but I won’t know for sure which areas will be plump, and I won’t know how long the plumpness will last. (Let’s not forget the lisp, either!)

We joke, and we laugh, because we’re alive.

I’ve Always Wanted Fuller Lips…But Not Quite Like This

Very Hard Day

I am an emotional eater, which would be fine if it weren’t for gastroparesis. Last night there were a few things that frazzled me, on top of it already being a busy night because of New Year’s Eve. NYE is my favorite holiday, and between some random events, and fighting off a cold, I’ve been left paying for it. I took a two hour nap, and I’m legitimately contemplating going to bed right now…it isn’t even 7pm.

Chronic illness takes a lot out of you, so when something happens that would leave a “normal” person tired, it can leave a chronically ill person super exhausted. Today it hurts to even move. I can’t imagine doing anything other than sleeping. I’m hoping my roommate takes my dog out…and I ate too much. The nausea and pain are definitely not enjoyable, but at least some of what I ate had nutrition I needed, namely protein.

This is one of those situations where I want to conquer the world, but I know I have to just relax and allow my body a chance to recover. Despite my seizure medications, I’ve had several moments where I thought I was about to have a seizure today. It’s worrisome. I’m hoping I don’t because I don’t want to deal with it. I know I should be more concerned about how a seizure impacts my body and brain, but I know all of that. My main concern is just not wanting to deal with my roommate being worried, potentially dealing with EMS, and even ending up in the ER.

I keep telling myself it’s okay to take a day to just¬†recover, but I also want to¬†conquer today because I swore I’d be a fighter in 2018, Of course, knowing when to relax is part of being a fighter…

Perhaps a shower will help things. It may just put me to sleep, but that isn’t the worst outcome. I don’t nap, so if I do, it’s usually a sign my body really needs the rest. I didn’t go to bed until around 4:30am, and I’d taken sleeping medication far earlier. That means the drugs wore off and I was left attempting to fend for myself and sleep naturally. I can only sleep in short spurts, hence the naps today.

I am not a quitter if I take a day off from being positive. I know that, and I have to embrace that. I didn’t have a good evening. I mean I did, then I didn’t, and the chaos and emotional aspects flared up the already active flare that i’ve been in. It was the kind of thing that leaves all parts of you raw. Despite the resolution, and the rational thinking I’m so fond of, I need to allow myself the ability to be angry, and sad.

Today is not a good day physically, and it’s a rough day emotionally, so together they’re feeding on one another, creating even more aggravating physical symptoms. Acknowledging that, and sleeping when I need to sleep, is the right thing to do. It may feel like giving up, but it’s really just recharging.

I am not a quitter.

Giving up isn’t an option, but taking a time out is. So today is a time out, a moment to listen to my body, and use heating pads and hot water bottles, to treat the aches and pains. Sleeping at random hours, and for long periods, is giving my brain the chance it needs to relax. (Please note: there was a long pause after the phrase “needs to,” because I literally couldn’t figure out something other than recharge to place afterwards. Clearly I should listen and take another nap!)

Happy New Year. Listen to your body regardless of whether or not it’s a holiday. You are your body’s best advocate, so be¬†the best you can be.

Very Hard Day

Changing Your Expectations and Being Okay with It

I have had to change so many of my expectations over the last few years, and you would think it would get less painful each time…but it doesn’t. When my ex-husband and I separated, it was a relief. It wasn’t a good marriage, despite being a long marriage, and the freedom from the constant verbal and emotional tirades was beyond amazing. My health had momentarily improved, leading me to believe that I would be so much better physically, because I had freed myself emotionally. It was partially true. My C-PTSD symptoms did decrease, to the point where my medications could be removed, but my Behcet’s didn’t get the notice.

Denial was my first mistake. I refused to accept that the symptoms I was having were Behcet’s related. Wasn’t I always uncoordinated? Didn’t I always have stomach issues? Finances were a mess because I’d blown my knee out, so the stress was¬†of course causing me some physical distress. I made so many excuses for so many obvious signs of flaring, that I was eventually sitting in the medical marijuana office, weighing in at 120 pounds, all 5’10” of me. I got my medical license to smoke, and for the first time ever, tried marijuana. At that point I was struggling to keep down water.

My second mistake was over optimism. Let me explain this further. Being optimistic is wonderful. You need to be positive to stay on track and fight your chronic illnesses. Being overly optimistic, though, prevents you from planning realistically. I kept telling myself every treatment change would work. When it didn’t, I just kept pushing forward. I pushed my body to the limit because I was still in denial. I had a boss prior to getting sicker, who was into positive thinking so seriously, that we literally couldn’t express¬†any negative feelings. I clung to the idea even after leaving the job.

The final mistake was combining mistakes one and two, with lying. I lied to my family. I lied to my friends. I told people I was fine, and when they saw me, they were floored by how¬†not fine I was. By the point I was going to NYU, where they would recommend Remicade and if that didn’t work, Cytoxan, I had been hospitalized for over a week, and was barely able to walk with a walker.

Denial, overly optimistic thinking, and lying to yourself and others, is not going to help you.

I still believe there will be a day when my illness doesn’t impact me day to day, because I’ll have treatments and tools at my disposal, but I am still coming to terms with that reality. Some days I will need my wheelchair. I will likely need IVIG regularly, for quite some time, if not indefinitely. Remission is out of the question, but given how aggressive my case has been, it isn’t likely.

And that’s okay.

That may sound like over optimism again, but it isn’t. I will adjust my life as needed, and with time, I will be able to find things that I can enjoy and do with whatever my body is capable of. I don’t know if anyone will ever be able to love me enough to live with me and commit to me, and while the thought of never settling down and actually living with someone hurts, I do know that it’s a possibility. I also know that there are people out there with chronic illnesses who have found partners, so it isn’t impossible. The first step, though, is accepting myself, and my body, for what it is.

My schooling changed. My potential career paths changed. It hurts. I wanted to be a clinical laboratory scientist more than anything, and I may not be able to ever pursue that path because of my ataxia. What I have found, though, is clinical study associate positions, and they’re actually really interesting. To be honest, I should have gotten my MPH (Master’s of Public Health), but I wasn’t as sick when I committed to the forensic program. Ultimately I can still get certificates for clinical study administration, and because of my undergraduate and different graduate degree, I could make a case that I would be an excellent advisor. I’ve literally studied the lab piece of things, and the investigative side of forensics, I am the perfect person to put together official studies that pair the work that is seen, with the behind the scenes work.

I have literally discovered a career I never¬†knew existed, and it’s in¬†demand where I live. I can also do it in a wheelchair, and even handle some administrative tasks from home.

Currently I’m not in a position to work, but I want to be working someday, and this career field gives me hope. Regardless I love the idea. I could also look into PhD programs with my undergraduate and graduate school, because they have agreements with certain degree programs, where they pay for your PhD if you give them 5 years of your time as a professor. I would actually enjoy teaching college students, and the flexibility of the potential online classes is amazing. Even if I had to do in person instruction, the ability to do it in a wheelchair also makes it a viable option.

Mostly it’s about recognizing that I even have options.

You may not be doing what you thought you’d be doing, but very few people in their 30’s are where they thought they’d be in their teens or even early 20’s. The friends I think that have it all, don’t really all have it all. I come from a small town and most of my friends have gotten married and had kids, but there are others like myself, who got married young and then got divorced. I’m glad I didn’t have kids with my ex-husband, because we would never have been able to peacefully coparent. I also wouldn’t be able to focus on getting myself well, if I had children to look after.

I am not where I want to be, but I am still here, and I still have the opportunity to move in a variety of directions. I just need to be open to the options that I have.

Changing Your Expectations and Being Okay with It

Happy Holidays, and Gross Poo Talk

So this year I wasn’t able to fly back to see family, which was definitely a bummer because I haven’t been able to the last two years either. With the illnesses going around, and my general poor health, flying just isn’t an option right now. While my seizure drugs are currently doing a good job, flying is a high stress situation for me. That means I don’t sleep well prior to flying, and I also tend to get nauseas so I don’t eat much either.¬†Anyhow, an amazing friend and his family offered to have me up with them on Christmas day. I ended up staying a couple nights before heading back down to San Diego. It was really amazing, minus my body being a pain in the rear.

Currently the GI issues are the biggest thing. I’ve reached a state of low nutrient intake, and low calorie intake. This has amplified the brain fog I was already dealing with courtesy of the neurological issues. My friend and his family were amazing. They had foods on hand that I could eat, including specially mate potato pancakes without onion so I wouldn’t hurt my stomach eating them. I felt kind of bad because I only ate two of them. I also only had 4 pieces of the bread they’d bought for me, too.

The issue is that I have a partial bowel obstruction. I’ve had them before, and sometimes I can clear them on my own, and other times I have to go into the ER for some really horrible assistance. I have no desire to have the doctors give me high strength laxatives, and enemas. I still have 2 months before GI will see me, and I have to have a bunch of testing between now and then that they want me to complete.

It’s like the doctors don’t realize that there is nothing that needs to be tested for. We know I have gastroparesis based on a test done several years a go. Yes the testing was done poorly, and I was barely over the line, but what does redoing the test prove? Also, the only reason they want the abdominal MRI is because I have stenosis of the celiac artery. I get that it’s super rare to have it the way that I have it, but we also know that this kind of thing can happen with Behcet’s patients. While I go through all of the scheduling and testing, we’re wasting time. I’m struggling, losing weight, and losing focus.

I went from super focused in classes, with high marks, to a struggling student who¬†can’t stay focused, and who is barely getting by.

This will be a short post just because I can’t focus, and may need a nap, haha. I’m still putting my hopes into IVIG. I want it to work, and I want to function again.

Happy Holidays, and Gross Poo Talk