That's how I feel today. Here's how Sjogrens is affecting me:
1. It attacked my thyroid. Now my thyroid is underactive. This means its very difficult for me to lose weight. This is really tough for me. I am on a daily medication for hypothyroidism. I may have to start seeing an endocrinologist soon.
2. It attacked my tear ducts so I have dry eyes. Even with corrective lenses it's tough for me to get 20/20 vision because of this. My eyes burn all day and by the end of the day sometimes I have to go to bed early because my eyes hurt too much. I tend to get conjunctivitis at least twice a year. I can't go anywhere without eye drops and each night I have to put ointment in them before bed.
3. It attacked my salivary glands. In many Sjogrens patients, they have dry mouth. I don't have that problem...yet, but my parotids (the largest of the salivary glands, on the sides of your mouth) are chronically inflamed. This means that they produce saliva, but don't drain well. I have to press on them to release the saliva. They also get infected easily because of this lack of drainage. Infections are very painful and make it difficult for me to eat solid food. These problems could eventual affect my dental health as well. I have to take chemotherapy once a week to combat the inflammation. I also have to take a prescription B vitamin to combat fatigue from the chemotherapy and get quarterly blood tests to make sure my body is properly filtering the chemotherapy.
4. I get frequent sinus infections. Unfortunately I also have year-round environmental allergies (damn 100+ yr old office building) and my nasal passages can no longer produce sufficient moisture to flush out these allergens. So I get sinus infections. The sinus infections cause additional drainage problems with my salivary glands. See # 3. I do take a daily allergy medication, and though it stops my eyes from swelling shut at work and the sneezing from ruling my life, it tends to dry me out more...
5. I have inflammation in my cardiovascular system which has caused discoloration as well as swelling in my feet and ankles. That may or may not clear up. I don't take any specific medication for that right now.
6. Because my immune system is all out of whack, I am prone to other types of infections as well, including viral and fungal infections specifically my feet (actually just my right foot). I see a podiatrist for that and we're currently undecided on a treatment option. The best medication in most cases can affect the liver and/or kidneys and since I'm already on chemotherapy that isn't the best option for me.
7. I see several different doctors: a general practioner for preventative care and wellness, an ENT for the parotitis, a rheumatologist for the Sjogrens itself, a chiropractor for general wellness and spinal adjustments, a podiatrist, a dentist, and I may have to start going to an endocrinologist as well. And don't forget the phlebotomist every three months. I've also considered going to an allergist to see if another kind of allergy treatment might be better (immunotherapy?) considering the drying side-effects of OTC allergy meds. I feel like I have a doctor's appointment about every two weeks.
8. I have several thousands of dollars of medical bills that I will be paying off for the next several months, possibly years.
9. I struggle with choosing an insurance plan that makes the most sense in terms of cost and tax benefits considering the cost of my care.
10. I'm tired. Not like I-need-sleep tired, but like my body is heavy and I can't carry it anymore. It's extremely frustrating for me because I don't like to slow down. It makes it hard for me to be a good mom sometimes. I hate that. Then I feel guilty because I know many others have it worse than I do.
11. Although I knew I had already decided I didn't want to have any more kids partly because I think pregnancy would be difficult for me I still mourn that loss of potential children and the chance at a "normal" pregnancy and delivery. I also wonder if I should consider a more permanent form of birth control since my chemotherapy can be very damaging to a fetus.
12. I'm stressed. I'm emotional. I'm freaked out about managing all this. Oh yeah, I'm on a daily med for that too.
Showing posts with label anxiety. Show all posts
Showing posts with label anxiety. Show all posts
Thursday, October 14, 2010
Thursday, September 9, 2010
Where to go from here? Part 2
So here it is - part two. This is the part where I talk about how I feel…more emotional than physical. Physically, right now, I’m just more tired than normal, but otherwise mostly okay. But emotionally, I’m kind of starting to feel like a wreck, and I may be making it worse by keeping a lot of that in to spare the other people in my life.
I am relieved to find out SOMETHING is going on and know now WHAT that something is. I tried to tell my general practitioner back in April that I felt “off.” That I thought my thyroid or something was acting up because I didn’t feel normal. My appetite was out of whack and I just didn’t feel right. I know that’s kind of vague, but it’s the best I can do. He said I hadn’t gained weight in the past 6 months so he didn’t see any reason to do any tests. (I, frankly, expected more from a doctor of osteopathy.) So then in June all hell breaks loose and finally someone starts to listen and pay attention to my concerns. But for the past 3 months I’ve felt like I’m just treading water, waiting to find out something for sure and now I have. But in those months since April, I’ve gained about 20 pounds, and in the last 16 months, I’ve gained almost 50 pounds. THAT is NOT normal for me. Granted I don’t lose weight very easily, but I don’t tend to gain it all that quickly either. I’m angry at myself for being weak and allowing this to happen. I’m angry at my GP for not listening to me and I wonder if I could have prevented some of this. I’m scared that I won’t be able to fix this and that I am destined to be this obese for the rest of my life. And I’m embarrassed by myself. I haven’t been this down about my body … well, maybe ever. And I’m trying so hard to push it down and be in denial that I’m only making things worse.
BUT with the results of my blood tests, my thyroid is a little bit off even with the Synthroid that I am currently on. So maybe if my GP will tweak my prescription a bit, it will help me lose a little weight. But what about the rest though? Some of my weight gain can be attributed to medical issues, but a lot of it is also the mental challenges that have come with that. I would like to think of myself as strong, but I wasn’t strong enough for this.
So I’ll have my thyroid meds changed. But that’s not all. Next up is the prescription for methotrexate that I have in my purse. Methotrexate is basically a chemotherapy drug. However, in my case, I won’t be having it injected directly into my veins; I’ll be taking it once a week in pill form. The reason the salivary gland infections keep coming back is because I have chronic inflammation in those glands so they cannot drain properly. Steroids this summer finally got me back to normal for a while, but that is only a temporary fix. The methotrexate will help combat the problem, but it can also cause some toxicity buildup in my liver and/or kidneys (which thankfully are fine right now). The fact that it is used to terminate pregnancies scares me as well (not that I have any plans of being pregnant). Maybe now is the time to consider a more permanent form of birth control though…?
I also need to consider the possibility of medications to manage the dry eyes, mouth, nose, etc caused by Sjogrens. Right now I take allergy medication daily to control the crazy sneezing and eye irritation I would get at work if I didn’t take it. BUT that medication is also drying me out. So it’s this very unstable balancing act of which one is more important and when the importance of these medical priorities shift.
I hate to change my diet and exercise habits drastically while I’m also making chemical changes to my body because it becomes hard to figure out to what I can attribute any reactions in my body… or is it better to change everything at once so the transition isn’t drug out over a long period of time? How do I find a new balance with everything? And with these new challenges should I increase my antidepressant dosage as well? And are there other treatment options? Alternative medicine? Can my chiropractor help? How do I change my diet and get back into my running groove (which I am VERY out of right now)? And how do I do all that and be a mom to my 5-yr-old as she evolves into a responsible student in kindergarten? And be a good girlfriend? And not put the job that I love (most of the time) in jeopardy. It’s a lot to consider and seeing it as a whole has me feeling very anxious right now. I’m just not sure yet how to break it down.
I am relieved to find out SOMETHING is going on and know now WHAT that something is. I tried to tell my general practitioner back in April that I felt “off.” That I thought my thyroid or something was acting up because I didn’t feel normal. My appetite was out of whack and I just didn’t feel right. I know that’s kind of vague, but it’s the best I can do. He said I hadn’t gained weight in the past 6 months so he didn’t see any reason to do any tests. (I, frankly, expected more from a doctor of osteopathy.) So then in June all hell breaks loose and finally someone starts to listen and pay attention to my concerns. But for the past 3 months I’ve felt like I’m just treading water, waiting to find out something for sure and now I have. But in those months since April, I’ve gained about 20 pounds, and in the last 16 months, I’ve gained almost 50 pounds. THAT is NOT normal for me. Granted I don’t lose weight very easily, but I don’t tend to gain it all that quickly either. I’m angry at myself for being weak and allowing this to happen. I’m angry at my GP for not listening to me and I wonder if I could have prevented some of this. I’m scared that I won’t be able to fix this and that I am destined to be this obese for the rest of my life. And I’m embarrassed by myself. I haven’t been this down about my body … well, maybe ever. And I’m trying so hard to push it down and be in denial that I’m only making things worse.
BUT with the results of my blood tests, my thyroid is a little bit off even with the Synthroid that I am currently on. So maybe if my GP will tweak my prescription a bit, it will help me lose a little weight. But what about the rest though? Some of my weight gain can be attributed to medical issues, but a lot of it is also the mental challenges that have come with that. I would like to think of myself as strong, but I wasn’t strong enough for this.
So I’ll have my thyroid meds changed. But that’s not all. Next up is the prescription for methotrexate that I have in my purse. Methotrexate is basically a chemotherapy drug. However, in my case, I won’t be having it injected directly into my veins; I’ll be taking it once a week in pill form. The reason the salivary gland infections keep coming back is because I have chronic inflammation in those glands so they cannot drain properly. Steroids this summer finally got me back to normal for a while, but that is only a temporary fix. The methotrexate will help combat the problem, but it can also cause some toxicity buildup in my liver and/or kidneys (which thankfully are fine right now). The fact that it is used to terminate pregnancies scares me as well (not that I have any plans of being pregnant). Maybe now is the time to consider a more permanent form of birth control though…?
I also need to consider the possibility of medications to manage the dry eyes, mouth, nose, etc caused by Sjogrens. Right now I take allergy medication daily to control the crazy sneezing and eye irritation I would get at work if I didn’t take it. BUT that medication is also drying me out. So it’s this very unstable balancing act of which one is more important and when the importance of these medical priorities shift.
I hate to change my diet and exercise habits drastically while I’m also making chemical changes to my body because it becomes hard to figure out to what I can attribute any reactions in my body… or is it better to change everything at once so the transition isn’t drug out over a long period of time? How do I find a new balance with everything? And with these new challenges should I increase my antidepressant dosage as well? And are there other treatment options? Alternative medicine? Can my chiropractor help? How do I change my diet and get back into my running groove (which I am VERY out of right now)? And how do I do all that and be a mom to my 5-yr-old as she evolves into a responsible student in kindergarten? And be a good girlfriend? And not put the job that I love (most of the time) in jeopardy. It’s a lot to consider and seeing it as a whole has me feeling very anxious right now. I’m just not sure yet how to break it down.
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