Finally, it is Friday again. This past week has been a whirlwind. It seems like so much has happened. In the life of someone with chronic illness, not everything is bad. Thank God for that!
At the end of last week I had a small bowel follow through. The doctors are still trying to work out my stomach issues. I have been suffering from nausea, vomitting, indigestion, inflammation, and other non-mentionables. I would say since about Easter, it has gotten increasingly worse. Although, I am excited and hopeful for answers and relief, I loathe procedures as much as anyone else.
For a small bowel follow through the patient drinks barium. Not a tasty treat, I might add. 16-20 ounces of a very thick chalky substance. Not easy for someone with stomach and digestive issues. Luckily, I had two very supportive friends accompany me. They took time out of their days off to spend a few hours with me at the hospital, keep me entertained and light-hearted, and then take me for lunch and shopping. Can friends get better than that?! Radiologists do several scans to watch the barium travel through your digestive system, particularly the small bowel. A day I had dreaded turned out to be a day of good laughs with a few scans interrupting our conversations.
I was sure I would be throwing up and in some incredible pain by the time it was over. To my surprise, I felt great. The aftertaste did make me feel queasy, but with some food in my stomach a smile wasn't hard to find. I even went as far as getting a diet soda fountain drink in the afternoon. A treat I have not indulged in for over a year due to my stomach issues. It was sweet heaven. Diet coke has always been a vice for me, and it was just another check on my list of don'ts for so long.
Since that day, I have been able to wear jeans. In the last 8 days, I have rarely had abdominal pain or discomfort. Some of the unmentionables have not stopped, but it has slowed. Nausea is gone, and appetite is back. My thoughts on this, "Could barium be a treatment for what ailes me?" It's a glimmer of hope. If nothing else, maybe the flare that has lasted these past several months has waned for a bit. Either way, I am thoroughly enjoying every minute of normalcy I am experiencing. The little things are so important. It is amazing the grace I feel right now.
During a run early this week, I was bitten by a dog. This dog is a frequent morning greeter during my runs. He always seems a little agressive, but his owners are usually enjoying their coffee on the porch with him so they keep him controlled. I have never felt scared because the owners are very pleasant. Not on this particular day. He was not tied up like usual and his owners were not outside. He lunged and got me. I had an angel watching over me. I jumped back, and a man passing by stuck his truck in between the dog and me. It felt like forever, but was probably only a few seconds, the owner rushes out and wrangled the dog. He took the dog inside and slammed the door. That was the end of that. Never coming out to see if the dog had done damage or if I was ok. The man who stopped made sure I was fine before he drove off. It was all very traumatic, but could not have turned out better. I walked away with a swollen bruised knee, hardly any puncture wounds, and a bruised ego for sure. I can only thank God for protecting me, and that amazing man who stopped to help. It could've been so much worse.
I also made the decision to start selling Mary Kay this week. As noted in previous posts, I am permanently disabled due to my comorbidities. I have always been a productive, Type A personality. Being disabled is a difficult task for me. No matter how many times I think I have come to accept this, I still always feel like their are ants in my pants. I need to do something for me. I started this blog. I have been doing a lot of research and advocating for healthier choices in my area. I came across the decision for Mary Kay because I can actually use the products. Hypoallergenic, natural products. The company itself does some wonderful things. I have been offered opportunities to work from home selling different products similar to the Mary Kay mode of operation. Nothing has really connected to me. This did. I am excited for this new journey, for this new opportunity.
My son started basketball practice this week. He is in a Boys & Girls club league for 6 & under. These kids are so adorable. Basketball is a perfect sport for my little energizer bunny. Watching him ppractice and make accomplishments he is proud of warms my heart every day. This combined with soccer will keep us all busy for the next few weeks, but the joy on his face is worth every second. He has also received a sticker for good behavior every single day this week so far. This is a huge accomplishment for him. We are so proud. If he comes home with one today, he will get a special surprise. He has completely exceeded our expectations, and that deserves recognition!
Tonight, I am making steak fingers with baked fries. A perfect comfort food for a Friday night. Even with all the diet restrictions, my family and I have come up with some great alternative ingredients to make some classics. My husband will be home from work early enough to join is for dinner. That is always a plus on a Friday night. We are also planning to have some friends over. I am also wearing jeans today. With all the bad things that I go through day in and day out, the good still outshines the bad. I am so grateful for all the prayers that are answered everyday. Not everything goes as I want it to or hope for, but so many times the unexpected turns out to be better than my hopes. Never a dull moment. I am so pleased to have the supportive and loving family that I do and the amazing friends that step up when no one else will. People like this, you do not let go. Cherish every second of this, I do!
Friday, September 30, 2011
Friday, September 23, 2011
Celiac Disease "invisible illness"
1. The illness I live with is: Celiac Disease
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: I have no idea
4. The biggest adjustment I’ve had to make is: eliminating gluten
5. Most people assume: it is an allergy
6. The hardest part about mornings are: missing doughnuts
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: wanting cookies
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses. Except when I have a seizure in front of people.
13. Regarding working and career: It is not entirely due to Celiac Disease, but I am disabled
14. People would be surprised to know: Even a crumb makes me extremely ill
15. The hardest thing to accept about my new reality has been: I will never eat regular bread again
16. Something I never thought I could do with my illness that I did was: eat pizza
17. The commercials about my illness: more gluten free options are coming out, but no commercials about the disease
18. Something I really miss doing since I was diagnosed is: meatball subs
19. It was really hard to have to give up: gluten
20. A new hobby I have taken up since my diagnosis is: cooking and nutrition
21. If I could have one day of feeling normal again I would: eat spaghetti
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial. Food is a bigger part of our lives than we think.
23. Want to know a secret? One thing people say that gets under my skin is: "Don't they have a pill for that."
24. But I love it when people: understand
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: Educate yourself and life becomes so much easier. I promise!
27. Something that has surprised me about living with an illness is: how painful contamination is
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Connective Tissue Disease/ Lupus "invisible illness"
1. The illness I live with is: Connective Tissue Disease
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: weight limitations (loose, painful joints)
5. Most people assume: I'm not sure many people even know about it
6. The hardest part about mornings are: they are slow moving
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: complete exhaustion
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses.
13. Regarding working and career: It is not entirely due to the CTD, but I am disabled
14. People would be surprised to know: My symptoms started with rashes
15. The hardest thing to accept about my new reality has been: That it is not going away
16. Something I never thought I could do with my illness that I did was: being able to run again, I had to take a long break
17. The commercials about my illness: rare
18. Something I really miss doing since I was diagnosed is: running as long as I wanted on Sundays
19. It was really hard to have to give up: the strength I thought I had
20. A new hobby I have taken up since my diagnosis is: relaxation- what a thought!
21. If I could have one day of feeling normal again I would: run as far as I could
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: not often a topic of conversation
24. But I love it when people: understand
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: I'm sorry. It will not be this bad all the time. You are not alone.
27. Something that has surprised me about living with an illness is: How different things are day to day
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Epilepsy "invisible illness"
1. The illness I live with is: Epilepsy
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: getting used to the interruptions in life
5. Most people assume: I don't know that people have assumptions about seizure disorders
6. The hardest part about mornings are: they are about the same
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: the fear of having a nighttime seizure
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses. Except when I have a seizure in front of people.
13. Regarding working and career: It is not entirely due to the seizure disorder, but I am disabled
14. People would be surprised to know: My symptoms started with my husband finding me passed out half dressed in our closet
15. The hardest thing to accept about my new reality has been: That it is not going away
16. Something I never thought I could do with my illness that I did was: have a driver's license
17. The commercials about my illness: rare
18. Something I really miss doing since I was diagnosed is: never waking up in the hospital
19. It was really hard to have to give up: A sense of control
20. A new hobby I have taken up since my diagnosis is: relaxation- what a thought!
21. If I could have one day of feeling normal again I would: feel free
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: "You've been doing too much, haven't you?" (after I have had a grand mal)
24. But I love it when people: Just know I did not cause this
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: I'm sorry!
27. Something that has surprised me about living with an illness is: How painful it is the days following a seizure
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Interstitial Cystitis "invisible illness"
1. The illness I live with is:Interstitial Cystitis
2. I was diagnosed with it in the year: 2004
3. But I had symptoms since: about 6 months prior
4. The biggest adjustment I’ve had to make is:having to pee all the time
4. The biggest adjustment I’ve had to make is:having to pee all the time
5. Most people assume: I have no idea
6. The hardest part about mornings are: having to pee the second my eyes open
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: waking up to pee
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: they have worked better that pharmaceuticals
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I can about invisible illnesses
13. Regarding working and career: It is not entirely due to the IC, but I am disabled
14. People would be surprised to know: My symptoms started with frequent urinary tract infections
15. The hardest thing to accept about my new reality has been: This is not a new reality, but when it was new the thought of living with this pain forever was imaginable
16. Something I never thought I could do with my illness that I did was: go into remission for 4 years
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: being able to travel with less hassle
19. It was really hard to have to give up:acidic foods
20. A new hobby I have taken up since my diagnosis is: this has not influenced new hobbies
21. If I could have one day of feeling normal again I would: leave the house without thinking about where the nearest bathroom is
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: this is rarely a subject of conversation
24. But I love it when people: treat me like a normal person
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: It is bearable, and you are not alone
27. Something that has surprised me about living with an illness is: that IC even existed
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Hashimoto's "invisible illness"
1. The illness I live with is: Hashimoto's Thyroiditis
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: about 6 months prior
4. The biggest adjustment I’ve had to make is: taking a pill every morning
5. Most people assume: It's no big deal
6. The hardest part about mornings are: Taking that pill 15 minutes before anything else enters my belly
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: about 6 months prior
4. The biggest adjustment I’ve had to make is: taking a pill every morning
5. Most people assume: It's no big deal
6. The hardest part about mornings are: Taking that pill 15 minutes before anything else enters my belly
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: this disease has little impact on my nights
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I can about invisible illnesses
13. Regarding working and career: It is not entirely due to the thyroid disease, but I am disabled
14. People would be surprised to know: My symptoms started with dry skin and hair loss
15. The hardest thing to accept about my new reality has been: This is not a new reality, but when it was new I was terrified of the regular blood tests
16. Something I never thought I could do with my illness that I did was: Live with it
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: waking up to no pills
19. It was really hard to have to give up: I did not have to give anything up to manage thyroid disease
20. A new hobby I have taken up since my diagnosis is: seeking out others who live with thyroid disease
21. If I could have one day of feeling normal again I would: Once on treatment I felt like myself again.
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: "I hear thyroid disease makes you fat."
24. But I love it when people: Want to know more to educate themselves
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: It sounds far more frightening than the reality is. 27. Something that has surprised me about living with an illness is: How ignorant I was about health when I was "healthy"
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Type I Diabetes "invisible illnesses"
1. The illness I live with is: Type 1 Diabetes
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: nearly 7 years prior (I had a long honey moon stage. Thank God)
4. The biggest adjustment I’ve had to make is: slowing down my active lifestyle due to frequent lows even with a very low dose of insulin
5. Most people assume: Well, I’m not sure what they assume – I think most people probably just don’t know much about it rather than make assumptions. I’d like to think that anyway.
6. The hardest part about mornings are: Praying my fasting glucose is in normal range so I can go for a run
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: resisting the late night sweet tooth
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible but the only option for Type I is insulin- pump or syringes?
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I can about invisible illnesses
13. Regarding working and career: It is not entirely due to the diabetes, but I am disabled
14. People would be surprised to know: That my father and sister also have Type I. 3 people in one immediate family is RARE.
15. The hardest thing to accept about my new reality has been: This is not a new reality, but acceptance is an ongoing process
16. Something I never thought I could do with my illness that I did was: Learn and remember how to manage food.
17. The commercials about my illness: Rarely have anything to do with Type I, and those that do don't have a big enough impact.
18. Something I really miss doing since I was diagnosed is: Not counting carbs
19. It was really hard to have to give up: My steadfast pace in college. I was diagnosed at age 20.
20. A new hobby I have taken up since my diagnosis is: Learning to cook real meals, not boxed
21. If I could have one day of feeling normal again I would: Go swimming for as long as I'd like, then take a run, then eat whatever I wanted without reading labels.
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: "I know so and so who has diabetes and they can (insert activity here), how come you can't." We are not all the same.
24. But I love it when people: Want to know more to educate themselves
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: IT is a lot of information now, but you will be amazed how smart you are. IT does get easier, and you are not alone.
27. Something that has surprised me about living with an illness is: How ignorant I was about health when I was "healthy"
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Tuesday, September 20, 2011
Guilt
I think today it is important for me to discuss an issue that is often overlooked. Guilt is a natural emotion for human beings. It is there to keep us on track, and insure that we make the right choices. It can also be a terrible burden. Especially for those with chronic illnesses, and I imagine it may be worse for parents with chronic illnesses.
It is no surprise that the first question in any persons mind when they get a diagnosis is, "Why?" A natural human instinct to sooth ourselves is to try to piece it all together in such a way that it makes sense to our minds. The reality is, however, sometimes there is no rhyme or reason. This, I believe, is where the problem lies. In trying to figure out the "why" behind it all, we end up using ourselves as scapegoats when no other logical explanation can be found.
I have recently been overwhelmed with this emotion of guilt. It is not my friend! No matter what the science behind it all says, I still feel that in some way I could have prevented these diseases I have been dealt. Then, to take it a step further, when I give myself some slack and say, "you did everything you could...", the guilty voice comes in and says, "yeah, but you could be handling this situation better..." I realize the irrationality of it all, but these are emotions. You cannot control your emotions.
In the past week or so, I have found myself allowing the guilty voice to get the better of me. My son wakes up in the middle of the night pretty consistently. He is nearly 6 years old at this point and has slept through the night since he was a year old. The struggle with this new pattern has been so mind boggling. On his way to school today, walking with his dad as he always does, the truth comes out. He cannot sleep because he is worried about me. How do you react to that?
My husband and I try our best to be age appropriately honest with him about my situation. It would be terrible for a kid at school to tell him something or for him to see something on TV that suddenly clicks when we haven't been upfront with him about the seriousness of the matter. We reassure him that we are working together everyday to make Momma better. The doctors are really smart and they have all the tools to make sure Momma will be around for a very long time. We tell him he has nothing to worry about. We also get him involved by explaining to him that his most important job is school. He needs to work really hard in school. That is his job. Everybody has a job, and when we all do our job, we can make it through anything. Unfortunately he is not my only source of guilt.
I look at my husband and the tired in his eyes. He did not walk into this marriage knowing he was going to have such a huge responsibility. He came into this marriage with an educated, full time working mom who ran 30 plus miles a week and always kept the house tidy. He came into this marriage with an active partner. He now has a whole different life. I thank God everyday that he is here by my side. He is an amazing man that deserves great honor and credit for all that he does. I just cannot fight the feeling that he would be better off if I hadn't brought this burden on him.
Then we move on to outside influences that effect guilt. Friends, gatherings, church, etc. Sometimes I have pushed so hard throughout the week to get up every morning and be the mom I need to be. School, home, homework, soccer, and not to mention the unexpected's we all deal with on a daily basis. By the time the weekend comes, along with the weekend chores, I am worn out. I barely have the energy to get done the necessities. And yet, I allow the guilt to push me further. Feeling like I need to make an appearance here or there. I need to be here for this person or I cannot miss another event so and so invited me to. The cycle is non stop.
I am here to say, it must stop now. I could not control what happened. I take all the steps every doctor suggests and follow their professional opinions as far as they'll take me. I do my absolute best for my family, friends, and myself. Can I allow myself to feel guilty for unattainable goals? No, absolutely not. And you shouldn't either. Chronic illnesses effect your life for the rest of your life. That in itself is burden enough to carry on your shoulders everyday. Do your part. Do your best. Love fully and live in the present. Listen to your body and heed its warnings. We all need a little break sometime. I am deciding that today I give myself that break.
The people in my life that matter will understand and still be there no matter what, as I would for them. The people who drop like flies, may only have been pests to begin with. Let's celebrate our blessings and forgive ourselves a little more often. Life is good, and so are you.
It is no surprise that the first question in any persons mind when they get a diagnosis is, "Why?" A natural human instinct to sooth ourselves is to try to piece it all together in such a way that it makes sense to our minds. The reality is, however, sometimes there is no rhyme or reason. This, I believe, is where the problem lies. In trying to figure out the "why" behind it all, we end up using ourselves as scapegoats when no other logical explanation can be found.
I have recently been overwhelmed with this emotion of guilt. It is not my friend! No matter what the science behind it all says, I still feel that in some way I could have prevented these diseases I have been dealt. Then, to take it a step further, when I give myself some slack and say, "you did everything you could...", the guilty voice comes in and says, "yeah, but you could be handling this situation better..." I realize the irrationality of it all, but these are emotions. You cannot control your emotions.
In the past week or so, I have found myself allowing the guilty voice to get the better of me. My son wakes up in the middle of the night pretty consistently. He is nearly 6 years old at this point and has slept through the night since he was a year old. The struggle with this new pattern has been so mind boggling. On his way to school today, walking with his dad as he always does, the truth comes out. He cannot sleep because he is worried about me. How do you react to that?
My husband and I try our best to be age appropriately honest with him about my situation. It would be terrible for a kid at school to tell him something or for him to see something on TV that suddenly clicks when we haven't been upfront with him about the seriousness of the matter. We reassure him that we are working together everyday to make Momma better. The doctors are really smart and they have all the tools to make sure Momma will be around for a very long time. We tell him he has nothing to worry about. We also get him involved by explaining to him that his most important job is school. He needs to work really hard in school. That is his job. Everybody has a job, and when we all do our job, we can make it through anything. Unfortunately he is not my only source of guilt.
I look at my husband and the tired in his eyes. He did not walk into this marriage knowing he was going to have such a huge responsibility. He came into this marriage with an educated, full time working mom who ran 30 plus miles a week and always kept the house tidy. He came into this marriage with an active partner. He now has a whole different life. I thank God everyday that he is here by my side. He is an amazing man that deserves great honor and credit for all that he does. I just cannot fight the feeling that he would be better off if I hadn't brought this burden on him.
Then we move on to outside influences that effect guilt. Friends, gatherings, church, etc. Sometimes I have pushed so hard throughout the week to get up every morning and be the mom I need to be. School, home, homework, soccer, and not to mention the unexpected's we all deal with on a daily basis. By the time the weekend comes, along with the weekend chores, I am worn out. I barely have the energy to get done the necessities. And yet, I allow the guilt to push me further. Feeling like I need to make an appearance here or there. I need to be here for this person or I cannot miss another event so and so invited me to. The cycle is non stop.
I am here to say, it must stop now. I could not control what happened. I take all the steps every doctor suggests and follow their professional opinions as far as they'll take me. I do my absolute best for my family, friends, and myself. Can I allow myself to feel guilty for unattainable goals? No, absolutely not. And you shouldn't either. Chronic illnesses effect your life for the rest of your life. That in itself is burden enough to carry on your shoulders everyday. Do your part. Do your best. Love fully and live in the present. Listen to your body and heed its warnings. We all need a little break sometime. I am deciding that today I give myself that break.
The people in my life that matter will understand and still be there no matter what, as I would for them. The people who drop like flies, may only have been pests to begin with. Let's celebrate our blessings and forgive ourselves a little more often. Life is good, and so are you.
Thursday, September 15, 2011
Taking control
I have amazed myself these past few days. I have been dealing with these illnesses and challenges for several years. They continue, it seems, to spiral and multiply. I am always left with a feeling of "What else?" and "How am I going to manage this one?"
Moving back from the city my husband and I went to college in was the best decision we could make. So many more answers have surfaced through small town doctors. The slow paced lifestyle decreases daily stress. The cost of living is definitely much more affordable which is crucial for a family dealing with long term medical needs. The only downfall is a lack of resources, especially when it comes to food options.
I have played with the idea of trying to find a way to make purchasing food more affordable and convenient in a place with very little resources. I have several different specialty doctors that I see about every 90 days, so I usually take the opportunity of traveling to their larger cities to purchase what I need. Although we have a local health food store, prices are high and options are limited. Since starting this blog, I have spent much more time on the computer and, with the help of some tech savvy family members, I am learning how to navigate technology a little better.
Let's be honest. I grew up in a generation where computers were brought into the home for personal use. The world wide web was introduced and online media and communications have exploded. My love for the outdoors, sports, and anything active has steered me away from the computer (or any technology for that matter). I suppose that is more of an excuse. It is probably more a matter of my own unwillingness to join the crowd. Either way, I am easing into it and obviously getting sucked in.
After months, if not years, of talking with friends and family about finding better options I came up with a plan several months ago to try to recruit businesses to come to our area. The idea stayed in my head all this time. Today, with the motivation of a dear family friend who also suffers from Celiac disease and lives in south east New Mexico not too far from myself, I decided to take the bull by the horns. I logged onto my favorite two health food stores sights (Whole Foods Market and Trader Joe's). Conveniently enough, they have "location request" tabs on their sites. I took complete advantage of those as well as sharing the idea through social media to generate a larger response. I also went to our city's website and submitted a "citizen's request for improvement". Who knew they had all these wonderful opportunities to speak your mind?
Granted, I imagine these may go unnoticed for some time. I am hoping that my local community will jump on my bandwagon to pressure these companies to explore our area. On another surprising note, the city contacted me within hours of my request. With a few questions and some suggestions, we ended with the decision that this idea would be taken to board members and city developers to see what can be done. Again, I realize this may never go anywhere, but I am pleasantly surprised by the quick response. People actually do care out there.
No matter how bitter the world seems these days, people are still humans and ultimately want to make life better for themselves. In doing that, we might just make the world a better place for our neighbor as well.
I am proud of myself for actually stepping out of my own comfort zone. I started a blog and began sharing some very intimate details of my life with the world hoping to find a connection and better lives. I have learned so much in the past few days about marketing, research, communication, as well as my own diseases......and technology too, I guess. Now, I have finally taken control of something that has had control of me for so long. I feel empowered and more motivated everyday. I am meeting new people everyday that are teaching me things about myself I never thought possible. I pray this journey continues because it is becoming a lifesaver.
Thank you God, all of my supportive friends and family, and the strangers enlightening me everyday. Everyone of you is making a difference.
Moving back from the city my husband and I went to college in was the best decision we could make. So many more answers have surfaced through small town doctors. The slow paced lifestyle decreases daily stress. The cost of living is definitely much more affordable which is crucial for a family dealing with long term medical needs. The only downfall is a lack of resources, especially when it comes to food options.
I have played with the idea of trying to find a way to make purchasing food more affordable and convenient in a place with very little resources. I have several different specialty doctors that I see about every 90 days, so I usually take the opportunity of traveling to their larger cities to purchase what I need. Although we have a local health food store, prices are high and options are limited. Since starting this blog, I have spent much more time on the computer and, with the help of some tech savvy family members, I am learning how to navigate technology a little better.
Let's be honest. I grew up in a generation where computers were brought into the home for personal use. The world wide web was introduced and online media and communications have exploded. My love for the outdoors, sports, and anything active has steered me away from the computer (or any technology for that matter). I suppose that is more of an excuse. It is probably more a matter of my own unwillingness to join the crowd. Either way, I am easing into it and obviously getting sucked in.
After months, if not years, of talking with friends and family about finding better options I came up with a plan several months ago to try to recruit businesses to come to our area. The idea stayed in my head all this time. Today, with the motivation of a dear family friend who also suffers from Celiac disease and lives in south east New Mexico not too far from myself, I decided to take the bull by the horns. I logged onto my favorite two health food stores sights (Whole Foods Market and Trader Joe's). Conveniently enough, they have "location request" tabs on their sites. I took complete advantage of those as well as sharing the idea through social media to generate a larger response. I also went to our city's website and submitted a "citizen's request for improvement". Who knew they had all these wonderful opportunities to speak your mind?
Granted, I imagine these may go unnoticed for some time. I am hoping that my local community will jump on my bandwagon to pressure these companies to explore our area. On another surprising note, the city contacted me within hours of my request. With a few questions and some suggestions, we ended with the decision that this idea would be taken to board members and city developers to see what can be done. Again, I realize this may never go anywhere, but I am pleasantly surprised by the quick response. People actually do care out there.
No matter how bitter the world seems these days, people are still humans and ultimately want to make life better for themselves. In doing that, we might just make the world a better place for our neighbor as well.
I am proud of myself for actually stepping out of my own comfort zone. I started a blog and began sharing some very intimate details of my life with the world hoping to find a connection and better lives. I have learned so much in the past few days about marketing, research, communication, as well as my own diseases......and technology too, I guess. Now, I have finally taken control of something that has had control of me for so long. I feel empowered and more motivated everyday. I am meeting new people everyday that are teaching me things about myself I never thought possible. I pray this journey continues because it is becoming a lifesaver.
Thank you God, all of my supportive friends and family, and the strangers enlightening me everyday. Everyone of you is making a difference.
Wednesday, September 14, 2011
Meditation
As I lay in bed last night thinking about the day ahead of me, I analyzed my body to determine whether or not I should go for a morning run or do some yoga. I have been so tired and weak lately it is a nightly internal argument as I am setting the alarm for the next morning. I have been an avid runner for over a decade. In the small town that I live I have forged a route that I love. It happens to be along many school zones so I have to get up early enough to beat the school traffic if it is going to be an enjoyable run. It is something my body yearns for and I feel I cannot let it go.
I have been told by numerous doctors that I need to stop running. I have been told that it is too strenuous for such a fragile body. I have also been told I will not have the strength to continue running. Exercise is such a crucial part of my life, I just cannot imagine not doing it. A quote from a pharmaceutical commercial comes to mind, "a body in motion stays in motion. a body at rest stays at rest." Doctors have suggested several different alternatives such as swimming, biking, walking, elliptical, and yoga. I have tried them all. Nothing seems to give me the same good feeling at the end. I suppose that's where we get the phrase "runner's high". If this is what I am going to be addicted to, I figure it is better than the alternative.
A common comment I get, that honestly cuts me to my core, is "Well, I see you out running so you must not be too sick." As I am laying in bed thinking about this day all these thoughts go in and out as they do every night. Guilt, I think, is a constant in someones life with chronic health issues. "Am I doing more harm than good? What will I do when the day comes that I have to stop? Will I be able to handle it? How can I feel so awful and still get out there and do this everyday?" I generally fall asleep to these thoughts with a sigh of relief telling myself, "I will cross that bridge when I get to it. I do not care if it is harming me, the mental impact is so much greater than anything else. Allow yourself some slack."
I will admit that in the past few years I have listened to my body a great deal more than I used to. I used to run anywhere from 5 to 8 miles a day no matter how I felt. I was in denial. I did not belief I could be as sick as it seemed I was. I ate healthy, I was able to run these amazing runs, there is no way something is wrong with me. I lived at an altitude of a mile high and pushed a running stroller with my baby for 7 miles a day when I first started having seizures. I was incorrigible.
I remember sitting at the Mayo Clinic back in 2008. My mom and dad were there with me. We were in the waiting room with several other people awaiting my initial evaluation. Trying to foresee what they would say or what was wrong, my parents and I tossed ideas back and forth trying to pass the time. I remember my dad asking, "What if they tell you to stop running?" I looked him straight in the eyes and said, "They will have to cut off my legs. I won't do it!" End of conversation.
I guess I feel this all needs some explanation. As you read this I can imagine the judgements running through your head. It must sound like I am addicted to exercise. It must sound like I have a mental disorder like exercise anorexia. The truth of the matter is, to me it is not about weight or body image. It started out that way many years back, but quickly turned into something I needed. I am not doing myself justice by continually saying I need this so I will take it a step further.
The doctor who sat me down and talked me into applying for disability and accepting the magnitude of the cards I had been dealt was of middle eastern decent. She immediately saw my Type A personality and over achiever mode of operation. This is not a good way to be when so much of your life is out of your control. She encouraged me to slow or stop the running every time I saw her. She encouraged me to look into meditation. Finding a balance. That inner peace. Connecting to your core, getting centered. I would listen, smile, and nod then walk out of her office thinking "How the heck do you do that?" I'd shrug it off.
As time rolled on, limitations got more dramatic and things that I loved were getting taken away piece by piece. The one thing I have clung to is running. Of course, throughout this all there is a lot of self awareness. There is a lot of acceptance that needs to be made. This includes a lot of analyzing and internalizing. Just laying it all out and finding a way to piece it back together with these new pieces. Changing, what I thought, was the person I would be in every aspect of my life. Taking in the comments, suggestions, opinions, recommendations, and judgements from professionals to family to friends. It all has to be organized in a way that I can accept myself and find what works best for me and my family.
Shortly after I started running so many years ago, it changed from something to improve my appearance to something I thoroughly enjoyed. Not until these last few years have I been able to explain it. With these recent digestive issues it has only become more crucial. Running is a release for me. It is my time of meditation (that I resisted so much from that wonderful doctor). I spend my runs talking to God. Asking Him for help, guidance, and strength. I pray for friends and family members in need. Anything and everything. My morning runs are my one hour a day for myself. I am alone with my thoughts. It is everything I once resisted, yet it was always there even when I didn't realize it.
More recently it has become about other things. Because of the digestive issues we are trying to work out, I run to gain an appetite. I am not sure the science behind it all. I have a very difficult time getting myself to eat, but when I run hunger creeps in to help. I also feel it moves things along. On days I do not run, my stomach issues seem so much more difficult. I feel like I have rocks sitting in my gut after I eat which leads me to not wanting to add to the pile with 2 additional meals that day. This may be completely mental or it may have some substance. That's for the professionals to figure out.
So, as I lay there last night with this conversation running through my head, that internal battle, I decided, "Go for it." When the day comes that it is life or death I will sit down and make the critical decision to stop running. Until that day comes, I will use these daily runs to give myself the inner strength I need to continue. I will say that I mix in some yoga to give my body a rest, especially on days where I am just utterly too weak. I will not allow the comments from other or their judgements take anything away from me. I am dealing with some difficult disease. Exerting myself too much can be harmful. The way I see it, mental health is just as crucial as physical health. The fact that running contributes to both is just a bonus. I will fight everyday for the strength to run. It is my freedom.
I am encouraged and inspired now. That light bulb going off, giving me that clear understanding about the connection between meditation and running. I want to look into meditation in a little more detail. I would like to learn techniques and educate myself on the background and history of this practice. This blog is allowing me to put my thoughts down and revisit them. It is getting me to a place where I can center myself and find out what really inspires me and what I am really passionate about. Everything I set out to do is falling into place and giving purpose to my life again.....without the 5 year plan I had engraved in my mind at the start of college. Life is ever changing. Roll with the punches.
I have been told by numerous doctors that I need to stop running. I have been told that it is too strenuous for such a fragile body. I have also been told I will not have the strength to continue running. Exercise is such a crucial part of my life, I just cannot imagine not doing it. A quote from a pharmaceutical commercial comes to mind, "a body in motion stays in motion. a body at rest stays at rest." Doctors have suggested several different alternatives such as swimming, biking, walking, elliptical, and yoga. I have tried them all. Nothing seems to give me the same good feeling at the end. I suppose that's where we get the phrase "runner's high". If this is what I am going to be addicted to, I figure it is better than the alternative.
A common comment I get, that honestly cuts me to my core, is "Well, I see you out running so you must not be too sick." As I am laying in bed thinking about this day all these thoughts go in and out as they do every night. Guilt, I think, is a constant in someones life with chronic health issues. "Am I doing more harm than good? What will I do when the day comes that I have to stop? Will I be able to handle it? How can I feel so awful and still get out there and do this everyday?" I generally fall asleep to these thoughts with a sigh of relief telling myself, "I will cross that bridge when I get to it. I do not care if it is harming me, the mental impact is so much greater than anything else. Allow yourself some slack."
I will admit that in the past few years I have listened to my body a great deal more than I used to. I used to run anywhere from 5 to 8 miles a day no matter how I felt. I was in denial. I did not belief I could be as sick as it seemed I was. I ate healthy, I was able to run these amazing runs, there is no way something is wrong with me. I lived at an altitude of a mile high and pushed a running stroller with my baby for 7 miles a day when I first started having seizures. I was incorrigible.
I remember sitting at the Mayo Clinic back in 2008. My mom and dad were there with me. We were in the waiting room with several other people awaiting my initial evaluation. Trying to foresee what they would say or what was wrong, my parents and I tossed ideas back and forth trying to pass the time. I remember my dad asking, "What if they tell you to stop running?" I looked him straight in the eyes and said, "They will have to cut off my legs. I won't do it!" End of conversation.
I guess I feel this all needs some explanation. As you read this I can imagine the judgements running through your head. It must sound like I am addicted to exercise. It must sound like I have a mental disorder like exercise anorexia. The truth of the matter is, to me it is not about weight or body image. It started out that way many years back, but quickly turned into something I needed. I am not doing myself justice by continually saying I need this so I will take it a step further.
The doctor who sat me down and talked me into applying for disability and accepting the magnitude of the cards I had been dealt was of middle eastern decent. She immediately saw my Type A personality and over achiever mode of operation. This is not a good way to be when so much of your life is out of your control. She encouraged me to slow or stop the running every time I saw her. She encouraged me to look into meditation. Finding a balance. That inner peace. Connecting to your core, getting centered. I would listen, smile, and nod then walk out of her office thinking "How the heck do you do that?" I'd shrug it off.
As time rolled on, limitations got more dramatic and things that I loved were getting taken away piece by piece. The one thing I have clung to is running. Of course, throughout this all there is a lot of self awareness. There is a lot of acceptance that needs to be made. This includes a lot of analyzing and internalizing. Just laying it all out and finding a way to piece it back together with these new pieces. Changing, what I thought, was the person I would be in every aspect of my life. Taking in the comments, suggestions, opinions, recommendations, and judgements from professionals to family to friends. It all has to be organized in a way that I can accept myself and find what works best for me and my family.
Shortly after I started running so many years ago, it changed from something to improve my appearance to something I thoroughly enjoyed. Not until these last few years have I been able to explain it. With these recent digestive issues it has only become more crucial. Running is a release for me. It is my time of meditation (that I resisted so much from that wonderful doctor). I spend my runs talking to God. Asking Him for help, guidance, and strength. I pray for friends and family members in need. Anything and everything. My morning runs are my one hour a day for myself. I am alone with my thoughts. It is everything I once resisted, yet it was always there even when I didn't realize it.
More recently it has become about other things. Because of the digestive issues we are trying to work out, I run to gain an appetite. I am not sure the science behind it all. I have a very difficult time getting myself to eat, but when I run hunger creeps in to help. I also feel it moves things along. On days I do not run, my stomach issues seem so much more difficult. I feel like I have rocks sitting in my gut after I eat which leads me to not wanting to add to the pile with 2 additional meals that day. This may be completely mental or it may have some substance. That's for the professionals to figure out.
So, as I lay there last night with this conversation running through my head, that internal battle, I decided, "Go for it." When the day comes that it is life or death I will sit down and make the critical decision to stop running. Until that day comes, I will use these daily runs to give myself the inner strength I need to continue. I will say that I mix in some yoga to give my body a rest, especially on days where I am just utterly too weak. I will not allow the comments from other or their judgements take anything away from me. I am dealing with some difficult disease. Exerting myself too much can be harmful. The way I see it, mental health is just as crucial as physical health. The fact that running contributes to both is just a bonus. I will fight everyday for the strength to run. It is my freedom.
I am encouraged and inspired now. That light bulb going off, giving me that clear understanding about the connection between meditation and running. I want to look into meditation in a little more detail. I would like to learn techniques and educate myself on the background and history of this practice. This blog is allowing me to put my thoughts down and revisit them. It is getting me to a place where I can center myself and find out what really inspires me and what I am really passionate about. Everything I set out to do is falling into place and giving purpose to my life again.....without the 5 year plan I had engraved in my mind at the start of college. Life is ever changing. Roll with the punches.
Tuesday, September 13, 2011
Moderation and Inspiration
I promised myself I wouldn't post everyday because I didn't want to become a slave to the computer. There has just been so much interesting information being thrown out there, I have to lay it out.
As I mentioned in previous posts, my son has been diagnosed with A.D.H.D. recently. Whether or not this clearly has anything to do with that, I am not sure, but I thought it was important to discuss. A study was published Monday suggesting that Spongebob Squarepants, a popular children's cartoon, may have negative effects on preschoolers ability to stay on task. From what I understand, researchers took a very small sample group of 4 year olds with similar backgrounds and submitted them to nine minutes of either Spongebob, a PBS cartoon, or coloring and drawing. Immediately after they performed a psychological tests to measure their ability to stay in task. The Spongebob spectators scored significantly lower than the other two groups. The reasoning behind the outcome, they said, is due to the rapid pace of the show as well as it's fantastic characters.
I have to admit, my son does enjoy watching Spongebob Squarepants. He particularly loves the "fantastic" characters. I personally do not like the show because I feel some of the story lines are inappropriate for children, and I do not like the bantar back and forth between Spongebob and Squidward. I feel it is a little too mean spirited for kids. As far as the attention span aspect goes, I do not feel there is a significant impact. I do not agree with the idea that it is as important to monitor what type of television your children watch as well as what amount of time they spend in front of the television. Lessons are taught in the home not through the television.
I do monitor what my son watches at my own home. I am not too concerned with the amount of time he spends in front of the television. My whole objective is to raise a well rounded, productive citizen. Although I avoid shows such as Spongebob in our own home due to my own personally feeling and opinions on the matter, I cannot control my son no matter where he is. I do my best to educate him about respect, appropriate behavior, kindness, and always putting forth your best. I have him in activities like soccer, basketball, and tee ball. He attends church. We do family activities and games. The majority of his time, even as a preschooler was not spent in front of the TV. I think that is what we all need to take away from this.
Television is not such an important aspect in people's lives that we need to start researching it they way we do food, alcohol, or drugs. The reality of it is, television is a part of life. It is everywhere from your doctor's office waiting room to the line at the bank. It is not the evil here. The evil is the way it is used. Moderation is the key to everything in life from exercise and healthy eating to television and video games.
Speaking of television, I was watching Jillian Michaels recently. She happens to be one of my idols. Every time I read anything or see anything about her she speaks to me more and more. She was talking about how pleased she is to be a co host on the daytime talk show The Doctors. She says she feels blessed and honored to be given this vehicle 5 days a week to better peoples lives by educating them about health and fitness. It gives her purpose in her life. That only inspires me more.
I had to come to a realization in my life when I was given so many limitations, and that was "What really makes you happy? What do you really enjoy?" I had to answer these questions to come to a level of acceptance about my new life. No longer would I be able to follow my dreams of becoming a psychologists, or a nurse, or a diabetic educator, or a nutritionist. The education and knowledge that I gained studying for those careers is not lost. I use it in my everyday life, and with a life like mine they sure have come in handy. The answer to those questions was sports. Everything about sports just speaks to me, and to advance it even further, the exercise improves your health. The nutritional knowledge only builds on that idea.
I watch Jillian Michaels on The Biggest Loser every year and she continues to motivate me to stay as healthy as I can. No excuses. I would love to do what she does. I would love to become a personal trainer. I know that is an impossibility at this point in my life. I do hope to inspire people to take a good look at their lives, and make improvements. Do not waste the health you have now on a few sodas and a lazy afternoon. Be grateful you have your health and cherish and respect it.
No matter where the road God has set out for me goes, I plan to follow it. I will continue to educate myself and improve myself in hopes that someday I will feel blessed and honored to help people the way Jillian explained she felt.
Again, I urge you to leave comments and ideas. This should be an open conversation. How do we improve ourselves and learn if we never look at things from another's perspective?
As I mentioned in previous posts, my son has been diagnosed with A.D.H.D. recently. Whether or not this clearly has anything to do with that, I am not sure, but I thought it was important to discuss. A study was published Monday suggesting that Spongebob Squarepants, a popular children's cartoon, may have negative effects on preschoolers ability to stay on task. From what I understand, researchers took a very small sample group of 4 year olds with similar backgrounds and submitted them to nine minutes of either Spongebob, a PBS cartoon, or coloring and drawing. Immediately after they performed a psychological tests to measure their ability to stay in task. The Spongebob spectators scored significantly lower than the other two groups. The reasoning behind the outcome, they said, is due to the rapid pace of the show as well as it's fantastic characters.
I have to admit, my son does enjoy watching Spongebob Squarepants. He particularly loves the "fantastic" characters. I personally do not like the show because I feel some of the story lines are inappropriate for children, and I do not like the bantar back and forth between Spongebob and Squidward. I feel it is a little too mean spirited for kids. As far as the attention span aspect goes, I do not feel there is a significant impact. I do not agree with the idea that it is as important to monitor what type of television your children watch as well as what amount of time they spend in front of the television. Lessons are taught in the home not through the television.
I do monitor what my son watches at my own home. I am not too concerned with the amount of time he spends in front of the television. My whole objective is to raise a well rounded, productive citizen. Although I avoid shows such as Spongebob in our own home due to my own personally feeling and opinions on the matter, I cannot control my son no matter where he is. I do my best to educate him about respect, appropriate behavior, kindness, and always putting forth your best. I have him in activities like soccer, basketball, and tee ball. He attends church. We do family activities and games. The majority of his time, even as a preschooler was not spent in front of the TV. I think that is what we all need to take away from this.
Television is not such an important aspect in people's lives that we need to start researching it they way we do food, alcohol, or drugs. The reality of it is, television is a part of life. It is everywhere from your doctor's office waiting room to the line at the bank. It is not the evil here. The evil is the way it is used. Moderation is the key to everything in life from exercise and healthy eating to television and video games.
Speaking of television, I was watching Jillian Michaels recently. She happens to be one of my idols. Every time I read anything or see anything about her she speaks to me more and more. She was talking about how pleased she is to be a co host on the daytime talk show The Doctors. She says she feels blessed and honored to be given this vehicle 5 days a week to better peoples lives by educating them about health and fitness. It gives her purpose in her life. That only inspires me more.
I had to come to a realization in my life when I was given so many limitations, and that was "What really makes you happy? What do you really enjoy?" I had to answer these questions to come to a level of acceptance about my new life. No longer would I be able to follow my dreams of becoming a psychologists, or a nurse, or a diabetic educator, or a nutritionist. The education and knowledge that I gained studying for those careers is not lost. I use it in my everyday life, and with a life like mine they sure have come in handy. The answer to those questions was sports. Everything about sports just speaks to me, and to advance it even further, the exercise improves your health. The nutritional knowledge only builds on that idea.
I watch Jillian Michaels on The Biggest Loser every year and she continues to motivate me to stay as healthy as I can. No excuses. I would love to do what she does. I would love to become a personal trainer. I know that is an impossibility at this point in my life. I do hope to inspire people to take a good look at their lives, and make improvements. Do not waste the health you have now on a few sodas and a lazy afternoon. Be grateful you have your health and cherish and respect it.
No matter where the road God has set out for me goes, I plan to follow it. I will continue to educate myself and improve myself in hopes that someday I will feel blessed and honored to help people the way Jillian explained she felt.
Again, I urge you to leave comments and ideas. This should be an open conversation. How do we improve ourselves and learn if we never look at things from another's perspective?
Monday, September 12, 2011
Silver Linings Outshine
It's Monday and all I can think of today is all the wonderful things that happened this weekend. We had family time, soccer games, football, and church. I could not think of a better way to spend my time.
Friday afternoon I went to pick up my son from school and that is where the smiles began. His teacher left a note for me in his folder. It just happened to be a "good" note. "Good" notes are only sent home when exceptional things happen. This is very special because we just had a full evaluation done and learned he has A.D.H.D. as well as anxiety. Sadly, his anxiety is due to seeing his mother chronically ill. My husband and I decided for our family that medication will be a last resort. Luckily, our son has a very patient and understanding teacher as well as a delightful and eager personality himself. His good behavior has just been increasing everyday and we are so proud.
Saturday morning we woke early for a double header in 6 and under soccer. I will have to admit, I have never been a soccer fan or player. The game is totally new to me. I am now officially addicted. Not only was the game very exciting and fast paced, the kids are ridiculously adorable. They play 3 on 3 so I can give you no details about positions or anything. Just seeing these kids run with such conviction and determination, smiles on their face the whole time, was pure joy. I am proud to say my 5 year old son made his first goal in his very first game. It did, however, count for the other team, but in his words, "at least I made a goal". All I can say to that is, he is absolutely right! Good job.
Saturday night I sat with my husband in our kitchen talking. We talked for hours. I love those nights. I was telling him how heavenly it would be if I could wake up just one day and be symptom free. Just one day would be amazing. I would be so grateful. Our nightly talks usually include our dreams and fantasies, what ifs, and somedays so this was just a typical night staring at the stars. With a deep sigh we said goodnight and headed off to bed. I fell asleep thinking about my wishes.
With freshly uploaded music on my ipod, I set out for my morning run. I was so glad to get through the entire run without getting sick. I did have to rush to the bathroom as soon as I got home, but that is still an accomplishment. Thereafter I did not have a stomach ache. I usually do not vocalize things that like that right away in fears of jinxing it. After a shower, laundry, cleaning, cooking, and of course NFL football I told my husband my wish had come true. I went through nearly an entire Sunday with little to no symptoms. It was something I could have never expected and am so grateful. Unfortunately, the Dallas Cowboys choked again so my bubble had a little leak, but beggars can't be choosers.
Sunday was also the tenth anniversary of the terrible September 11, 2001. With all the raw emotion floating around it was hard not to shed a tear. I am thankful that I did not lose anybody close to me that day. I am thankful that although our lives have changed, we are still very blessed to live freely. I realized my five year old will look at this day in history books the way I see Pearl Harbor Day. I will do my best to teach him what the world was like before September 11th, and instill in him an open heart.
Sunday was also my son's first day of catechism. I am not Catholic, but my husband's family is. It is very important for him to raised in the church. I am a faithful, religious person. I was raised Presbyterian, and that's where I am most comfortable. I believe as long as you learn how to be a good person, it does not matter what label you put on it. I also think it is important for him to see that there is a higher power in control so he does not need to worry. He absolutely loved it. After only an hour's time he came home with so much information. The smile on his face was unforgettable.
Today is a rough one. I am exhausted, weak, and fogging. Body aches today are constant. I also have a headache that will not quit. No matter what the day has to offer, I always try to find the silver lining. I have only a slight ache in my belly and have not had to rush to the bathroom once today. I have been hungry and able to eat without additional medication. There is no soccer practice, church activities, or prior engagements so I get to relax and enjoy Monday Night Football.
The silver linings outshine the rain falling.
Friday afternoon I went to pick up my son from school and that is where the smiles began. His teacher left a note for me in his folder. It just happened to be a "good" note. "Good" notes are only sent home when exceptional things happen. This is very special because we just had a full evaluation done and learned he has A.D.H.D. as well as anxiety. Sadly, his anxiety is due to seeing his mother chronically ill. My husband and I decided for our family that medication will be a last resort. Luckily, our son has a very patient and understanding teacher as well as a delightful and eager personality himself. His good behavior has just been increasing everyday and we are so proud.
Saturday morning we woke early for a double header in 6 and under soccer. I will have to admit, I have never been a soccer fan or player. The game is totally new to me. I am now officially addicted. Not only was the game very exciting and fast paced, the kids are ridiculously adorable. They play 3 on 3 so I can give you no details about positions or anything. Just seeing these kids run with such conviction and determination, smiles on their face the whole time, was pure joy. I am proud to say my 5 year old son made his first goal in his very first game. It did, however, count for the other team, but in his words, "at least I made a goal". All I can say to that is, he is absolutely right! Good job.
Saturday night I sat with my husband in our kitchen talking. We talked for hours. I love those nights. I was telling him how heavenly it would be if I could wake up just one day and be symptom free. Just one day would be amazing. I would be so grateful. Our nightly talks usually include our dreams and fantasies, what ifs, and somedays so this was just a typical night staring at the stars. With a deep sigh we said goodnight and headed off to bed. I fell asleep thinking about my wishes.
With freshly uploaded music on my ipod, I set out for my morning run. I was so glad to get through the entire run without getting sick. I did have to rush to the bathroom as soon as I got home, but that is still an accomplishment. Thereafter I did not have a stomach ache. I usually do not vocalize things that like that right away in fears of jinxing it. After a shower, laundry, cleaning, cooking, and of course NFL football I told my husband my wish had come true. I went through nearly an entire Sunday with little to no symptoms. It was something I could have never expected and am so grateful. Unfortunately, the Dallas Cowboys choked again so my bubble had a little leak, but beggars can't be choosers.
Sunday was also the tenth anniversary of the terrible September 11, 2001. With all the raw emotion floating around it was hard not to shed a tear. I am thankful that I did not lose anybody close to me that day. I am thankful that although our lives have changed, we are still very blessed to live freely. I realized my five year old will look at this day in history books the way I see Pearl Harbor Day. I will do my best to teach him what the world was like before September 11th, and instill in him an open heart.
Sunday was also my son's first day of catechism. I am not Catholic, but my husband's family is. It is very important for him to raised in the church. I am a faithful, religious person. I was raised Presbyterian, and that's where I am most comfortable. I believe as long as you learn how to be a good person, it does not matter what label you put on it. I also think it is important for him to see that there is a higher power in control so he does not need to worry. He absolutely loved it. After only an hour's time he came home with so much information. The smile on his face was unforgettable.
Today is a rough one. I am exhausted, weak, and fogging. Body aches today are constant. I also have a headache that will not quit. No matter what the day has to offer, I always try to find the silver lining. I have only a slight ache in my belly and have not had to rush to the bathroom once today. I have been hungry and able to eat without additional medication. There is no soccer practice, church activities, or prior engagements so I get to relax and enjoy Monday Night Football.
The silver linings outshine the rain falling.
Friday, September 9, 2011
another day another stomach ache
This week has been interesting. Lots of information, lots of speculation, lots of changes, and still lots of smiles. First of all, I was awakened in the middle of the night to what I am sure is a mouse in the wall between our bedroom closet and our bathroom. SCARY! Mice carry disease and that terrifies me LOL This is our first home so I am a little clueless as how to take care of this pest. I do not want an infestation. Advice anyone? Cats are not an option in our household. It did lead to some interesting pillow talk, trying to figure out what that little creature could have to do so busy in the middle of the night. We think he is building a city.
I watched an interview with Emmitt Smith yesterday. I am a lifelong Cowboy fan and love me some Emmitt. He talked about how he used to meditate before games to envision the great run, the touchdown, the good block, and the win. I joked with my husband and said I was going to envision today being a good day. I envisioned my morning run going smoothly without me having to stop because of getting sick. I envisioned getting dressed in regular clothes with no pain. I envisioned being hungry for meals. I went to bed with a smile on my face ready to face what I had envisioned.
I woke up this morning feeling motivated. I set out for my run and made it almost all the way through before my stomach decided it no longer wanted what was inside. A typical event in my daily life these days. I rushed to the bathroom, dealt with it, got in a nice shower, and tried to relax away the pain. I got myself ready. I put on my makeup and did my hair with a smile on my face. Today is going to be a good day. I then chose my outfit.
I picked a cute tank top and a pair of jeans. Although all of my jeans at this point are baggy, I rarely get to wear a pair because the pressure of the waistband hurts. I have been wearing many elastic waistband outfits lately, but long for the wardrobe that just sits in my closet, waiting to be worn. Our car is in the shop right now so I had to drive my husband to work. I put on my clothes and topped it off with some perfume. Feeling pretty, just a little achy, we headed out the door.
The second I sit down in the driver's seat (I have regained driving privileges), the pain and pressure shoots through my abdomen. GGRRR!! After the 5 minute drive to the pharmacy where he works, it was obvious I would not be able to wear jeans today. I had them unbuttoned and unzipped before we got out of our own driveway.
So, here I sit at home today. The first day out of the week I have no doctor appointments or weigh ins or paperwork to deal with, so I plan on resting until my little man gets out of school. I changed into my elastic band lounge pants for relief. With a sigh, I looked in the mirror. At least the cute tank I picked out goes with these pants, and my hair and makeup are still good. So there! I'll just expand my wardrobe (no pun intended) to included varying types of elastic waisted pants. Maybe denim, buttons, and zippers are overrated anyway.
I have an appointment in a nearby town with a gastroenterologist. My local doctors fear I have Ulcerative Colitis or Crohn's disease. Both (surprise, surprise) autoimmune disease of the intestines. I am excited to get information and answers. I pray for relief. I fear, like many of the conditions I have, the treatment options will be greatly limited due to contraindications of other illnesses or meds I am currently dealing with.
I received a comment from a cousin asking if any doctor has stopped to think there may be one big underlying cause to this cluster of diseases that seem so relentless. Unfortunately, even the Mayo Clinic was left clueless. I get many comments that someday I will make somebody very rich when they figure it out and publish my case in a medical journal. I also get asked about research constantly. No one has stepped up. No one has decided to take this on and get to the bottom of it. I have actually been turned away many times due to the complexity of the situation. Each doctor and each specialist focuses solely on their specialty and recommend that someone take an thorough look. My primary doctor is a Godsend, but is left dumbfounded. I am hopeful this blog will end the cycle.
I am excited for this day still. My son has been promised a snow cone if he gets a sticker for good behavior at school today. I am a bit of a stickler for junk food so he is very excited! Tomorrow morning he has his very first soccer game. Actually, a double header. My husband and I were basketball players and I am a runner. Soccer is a whole new world for us, but our little man LOVES it. Seeing the joy in his face is the best feeling in the world. Finally, on Sunday the Cowboys start off their NFL season with a the new coach. Let's hope this season is better than the last few. I think family time, movies, soccer, and football are just what I need. Now, time for a nap!
I watched an interview with Emmitt Smith yesterday. I am a lifelong Cowboy fan and love me some Emmitt. He talked about how he used to meditate before games to envision the great run, the touchdown, the good block, and the win. I joked with my husband and said I was going to envision today being a good day. I envisioned my morning run going smoothly without me having to stop because of getting sick. I envisioned getting dressed in regular clothes with no pain. I envisioned being hungry for meals. I went to bed with a smile on my face ready to face what I had envisioned.
I woke up this morning feeling motivated. I set out for my run and made it almost all the way through before my stomach decided it no longer wanted what was inside. A typical event in my daily life these days. I rushed to the bathroom, dealt with it, got in a nice shower, and tried to relax away the pain. I got myself ready. I put on my makeup and did my hair with a smile on my face. Today is going to be a good day. I then chose my outfit.
I picked a cute tank top and a pair of jeans. Although all of my jeans at this point are baggy, I rarely get to wear a pair because the pressure of the waistband hurts. I have been wearing many elastic waistband outfits lately, but long for the wardrobe that just sits in my closet, waiting to be worn. Our car is in the shop right now so I had to drive my husband to work. I put on my clothes and topped it off with some perfume. Feeling pretty, just a little achy, we headed out the door.
The second I sit down in the driver's seat (I have regained driving privileges), the pain and pressure shoots through my abdomen. GGRRR!! After the 5 minute drive to the pharmacy where he works, it was obvious I would not be able to wear jeans today. I had them unbuttoned and unzipped before we got out of our own driveway.
So, here I sit at home today. The first day out of the week I have no doctor appointments or weigh ins or paperwork to deal with, so I plan on resting until my little man gets out of school. I changed into my elastic band lounge pants for relief. With a sigh, I looked in the mirror. At least the cute tank I picked out goes with these pants, and my hair and makeup are still good. So there! I'll just expand my wardrobe (no pun intended) to included varying types of elastic waisted pants. Maybe denim, buttons, and zippers are overrated anyway.
I have an appointment in a nearby town with a gastroenterologist. My local doctors fear I have Ulcerative Colitis or Crohn's disease. Both (surprise, surprise) autoimmune disease of the intestines. I am excited to get information and answers. I pray for relief. I fear, like many of the conditions I have, the treatment options will be greatly limited due to contraindications of other illnesses or meds I am currently dealing with.
I received a comment from a cousin asking if any doctor has stopped to think there may be one big underlying cause to this cluster of diseases that seem so relentless. Unfortunately, even the Mayo Clinic was left clueless. I get many comments that someday I will make somebody very rich when they figure it out and publish my case in a medical journal. I also get asked about research constantly. No one has stepped up. No one has decided to take this on and get to the bottom of it. I have actually been turned away many times due to the complexity of the situation. Each doctor and each specialist focuses solely on their specialty and recommend that someone take an thorough look. My primary doctor is a Godsend, but is left dumbfounded. I am hopeful this blog will end the cycle.
I am excited for this day still. My son has been promised a snow cone if he gets a sticker for good behavior at school today. I am a bit of a stickler for junk food so he is very excited! Tomorrow morning he has his very first soccer game. Actually, a double header. My husband and I were basketball players and I am a runner. Soccer is a whole new world for us, but our little man LOVES it. Seeing the joy in his face is the best feeling in the world. Finally, on Sunday the Cowboys start off their NFL season with a the new coach. Let's hope this season is better than the last few. I think family time, movies, soccer, and football are just what I need. Now, time for a nap!
Thursday, September 8, 2011
Not so formal
This blog is not intended to be so formal and full of facts and statistics. In order to start an open conversation and start sharing we all need to be on a level playing feild. My goal with the first few posts was to ctach everyone up to speed. I may not post every single day. I will try to post once or twice a week, more if I feel I can. I would love for anyone to follow and share comments, stories, ideas, thoughts, anything at all. I hope to share the joys in my life, not just these daunting illnesses. I have a little boy who is the light of my life and a husband whose sense of humor is never in short supply. We can be pretty interesting. I also hope to share recipes, hobbies, new activities, anything that may brighten someone's life. Let's keep this going. Thank you.
let's get educated
I woke up this morning, jumped on my computer, and was taken aback by the enormous response I got to starting this blog. Very exciting. Changes need to be made, and the only way for that to happen is for people to aware and working together.
I thought I might give y'all some layman's definitions of all the confusing terminology. Many of these diseases are not well know. I am not a professional. I am not a doctor or a scientist. I just consider myself a professional patient. I will post links to sites with professional/ scientific definitions.
I'll start with Hashimoto's. I was 13 when I got this diagnosis. At the time, the cartoon Hunchback of Notre Dame was in theatres. I always thought of the hunchback "Quasimodo" when I heard I had this. It is an autoimmune disease of the thyroid gland. Autoimmune diseases happen when your body's own immune system begins attacking healthy tissue instead of fighting invaders. The soldiers are the antibodies. Doctors can identify specific antibodies to diagnose different autoimmune diseases. The thyroid gland produces hormones that help regulate many things in your body, primarily your metabolism.
Next we move on to Type I Diabetes. Also, an autoimmune disease. Many people are familiar with diabetes in some sense because Type II is running amok. These are two very different diseases. Type I, formerly known as juvenile diabetes, is when the antibodies attack the beta cells in your pancreas that produce insulin. Insulin is a hormone that controls blood sugar levels. Type I diabetics require insulin injections on a daily basis. I personally use a pump. It is a device that has an infusion set that is attached to my abdominal area for a period of 3 days at a time. It is the size of a pager, and it works very similar to a pancreas. I just manually tell it what to do with buttons. This is the greatest invention, in my opinion, because it prevents me from having to do multiple injections everyday.
The next diagnosis I heard was Interstitial Cystitis. This is not something I would normally, openly talk about. When it comes to health issues, however, there should be no shame. No judge zone. It is not our fault. Again, this is an autoimmune disease. In this case, the lining of your bladder is attacked. This can reduce or destroy the mucus lining. The bladder fills with urine, as every body's does, and without the protection of that lining, the acidity causes lesions and ulcers. You could imagine, this is a painful process. In some cases, nearly debilitating. This disease actually goes through active times and times of remission. Thankfully for me, I have been in remission for about 11 months at this point. Remission can last anywhere from a few days to a few years. Treatment is usually oral medication.
At this point, you may be thinking "do autoimmune diseases come in clusters?" Well, some do. Many patients with autoimmune disease have 2, 3 or 4 different diseases. To my knowledge, that is the typical max. In my case, overachiever that I am, I didn't stop at 3. We fast forward to the diagnosis of epilepsy. Epilepsy is not an autoimmune disease, however it is chronic. That means I will have it for the rest of my life. As are all the autoimmune diseases. There is no cure. Epilepsy is simply defined as having more than one recorded seizure in the span of one year with no obvious cause such as head trauma or high fever. I personally have grand mal, petit mal, and partial complex seizures. We have not found a cause at this point.
On to another autoimmune disease? Yes, we are. Celiac disease happens when antibodies attack the lining of the small intestine causing damage when patients ingest gluten. Gluten is a protein found in wheat, rye, and barley. Celiac patients are warned to avoid oats, due to the fact that oats are usually processed in the same facility as the other grains. There is a difference between an allergy to gluten, an intolerance to gluten, and full blown celiac disease. Full blown celiac disease can cause severe reactions to the consumption of gluten. A digestive issue that is certainly not fun!
Celiac disease can cause malnutrition to the point of effecting other body symptoms and creating widespread symptoms. When these symptoms didn't slow even with eliminating gluten completely, it was determined that I definitely had a connective tissue disease. It has been classified as undifferentiated, mixed, and full blown lupus. Depending on the doctor and the test results. It is considered a rheumatological disease. That covers many autoimmune disease. Rheumatological diseases are more difficult to identify because the antibodies are not always present when patients are tested. It is usually a combination of signs, symptoms, and blood tests that give the diagnosis. Whatever you call it, a connective tissue disease is just what it sounds like. Any connective tissue in your body (skin, bones, ligaments, tendons, etc.) can be attacked and damaged. Treatment is usually steroids, anti-inflammatory medications, anti malaria drugs, or immunosuppressants. This is where things get complicated. Steroids can greatly affect blood sugar so they are not recommended for diabetics. Anti-inflammatory medications usually cause some sort of digestive reaction so celiac patients cannot use them. It can cause ulcers, stomach bleeding, and even cancer. Immunosuppressants can cause liver and kidney damage so they are not typically recommended for lupus patients or diabetics. So I currently take an anti malaria medication. I am not sure what the science behind it is, but it seems to slow symptoms and make them bearable. Whew, I'm getting tired just laying this all out. Hahaha
In the mix of all that I was diagnosed with an infection I mentioned yesterday called disseminated histoplasmosis. Please read this whole paragraph. I know what my initial reaction to the explanation was, and it was not pleasant. Histoplasmosis is a fungus. Mold and fungus spores fill our breathing air everyday. We inhale these all the time. Most often they are filtered out or the bodies immune system attacks them before we even know we've inhaled them. Often time healthy people will get a cold or chest congestion for about 2 weeks if they get histoplasmosis, but the body deals with it. In a person with a suppressed or compromised immune system it can be much worse. The fungus gets inhaled into the lungs and begins to grow spores. Eventually it spreads throughout the body, dissemination. It is not contagious. It can cause brain damage, lung problems, spinal problems, skin lesions, etc. The treatment usually consists of a strong anti fungal taken for about 1 year. There is a chance of relapse after the year of treatment, but that is rare.
We move on to the final diagnosis of Pernicious Anemia. This apparently is when antibodies attack the lining of the stomach and prevent the body from absorbing vitamin B12. B12 is important for the central nervous system. We get b12 from animal products mostly. With a deficiency, patients feel tired and weak. They often have nausea and vomiting because the nerves are being damaged in the stomach lining. With B12 injections, these symptoms usually disappear fairly quickly. In times of high stress, whether it be physical or emotional (even excitement), it is recommended that patients increase their B12 to prevent symptoms from returning.
We are now currently awaiting an evaluation for yet another autoimmune disease. Appointments are coming in the following weeks so I will fill you in as I get information.
To end on an inspiring note: I decided to call this "Antibody Ninja Girl" as an homage to my beautiful, amazing angel of a son. He has a difficult time seeing his mother go through so much. He feels helpless, but just wants to make things better. He has taken on an very strong interest in super heroes. To ease his anxiety about his environment he is constantly saving the world! It is adorable, and he is certainly heroic. If he believes super heroes can change the world, let's give it a shot. These antibodies are like ninjas in the night sneaking in and destroying healthy tissue in my body. We are out to end their destruction. Join me in the fight. Power to the people. Hahaha ok that's a little dramatic, but you gotta laugh at the little things in life. That's what makes it all worth while.
Here are some links for real information
I thought I might give y'all some layman's definitions of all the confusing terminology. Many of these diseases are not well know. I am not a professional. I am not a doctor or a scientist. I just consider myself a professional patient. I will post links to sites with professional/ scientific definitions.
I'll start with Hashimoto's. I was 13 when I got this diagnosis. At the time, the cartoon Hunchback of Notre Dame was in theatres. I always thought of the hunchback "Quasimodo" when I heard I had this. It is an autoimmune disease of the thyroid gland. Autoimmune diseases happen when your body's own immune system begins attacking healthy tissue instead of fighting invaders. The soldiers are the antibodies. Doctors can identify specific antibodies to diagnose different autoimmune diseases. The thyroid gland produces hormones that help regulate many things in your body, primarily your metabolism.
Next we move on to Type I Diabetes. Also, an autoimmune disease. Many people are familiar with diabetes in some sense because Type II is running amok. These are two very different diseases. Type I, formerly known as juvenile diabetes, is when the antibodies attack the beta cells in your pancreas that produce insulin. Insulin is a hormone that controls blood sugar levels. Type I diabetics require insulin injections on a daily basis. I personally use a pump. It is a device that has an infusion set that is attached to my abdominal area for a period of 3 days at a time. It is the size of a pager, and it works very similar to a pancreas. I just manually tell it what to do with buttons. This is the greatest invention, in my opinion, because it prevents me from having to do multiple injections everyday.
The next diagnosis I heard was Interstitial Cystitis. This is not something I would normally, openly talk about. When it comes to health issues, however, there should be no shame. No judge zone. It is not our fault. Again, this is an autoimmune disease. In this case, the lining of your bladder is attacked. This can reduce or destroy the mucus lining. The bladder fills with urine, as every body's does, and without the protection of that lining, the acidity causes lesions and ulcers. You could imagine, this is a painful process. In some cases, nearly debilitating. This disease actually goes through active times and times of remission. Thankfully for me, I have been in remission for about 11 months at this point. Remission can last anywhere from a few days to a few years. Treatment is usually oral medication.
At this point, you may be thinking "do autoimmune diseases come in clusters?" Well, some do. Many patients with autoimmune disease have 2, 3 or 4 different diseases. To my knowledge, that is the typical max. In my case, overachiever that I am, I didn't stop at 3. We fast forward to the diagnosis of epilepsy. Epilepsy is not an autoimmune disease, however it is chronic. That means I will have it for the rest of my life. As are all the autoimmune diseases. There is no cure. Epilepsy is simply defined as having more than one recorded seizure in the span of one year with no obvious cause such as head trauma or high fever. I personally have grand mal, petit mal, and partial complex seizures. We have not found a cause at this point.
On to another autoimmune disease? Yes, we are. Celiac disease happens when antibodies attack the lining of the small intestine causing damage when patients ingest gluten. Gluten is a protein found in wheat, rye, and barley. Celiac patients are warned to avoid oats, due to the fact that oats are usually processed in the same facility as the other grains. There is a difference between an allergy to gluten, an intolerance to gluten, and full blown celiac disease. Full blown celiac disease can cause severe reactions to the consumption of gluten. A digestive issue that is certainly not fun!
Celiac disease can cause malnutrition to the point of effecting other body symptoms and creating widespread symptoms. When these symptoms didn't slow even with eliminating gluten completely, it was determined that I definitely had a connective tissue disease. It has been classified as undifferentiated, mixed, and full blown lupus. Depending on the doctor and the test results. It is considered a rheumatological disease. That covers many autoimmune disease. Rheumatological diseases are more difficult to identify because the antibodies are not always present when patients are tested. It is usually a combination of signs, symptoms, and blood tests that give the diagnosis. Whatever you call it, a connective tissue disease is just what it sounds like. Any connective tissue in your body (skin, bones, ligaments, tendons, etc.) can be attacked and damaged. Treatment is usually steroids, anti-inflammatory medications, anti malaria drugs, or immunosuppressants. This is where things get complicated. Steroids can greatly affect blood sugar so they are not recommended for diabetics. Anti-inflammatory medications usually cause some sort of digestive reaction so celiac patients cannot use them. It can cause ulcers, stomach bleeding, and even cancer. Immunosuppressants can cause liver and kidney damage so they are not typically recommended for lupus patients or diabetics. So I currently take an anti malaria medication. I am not sure what the science behind it is, but it seems to slow symptoms and make them bearable. Whew, I'm getting tired just laying this all out. Hahaha
In the mix of all that I was diagnosed with an infection I mentioned yesterday called disseminated histoplasmosis. Please read this whole paragraph. I know what my initial reaction to the explanation was, and it was not pleasant. Histoplasmosis is a fungus. Mold and fungus spores fill our breathing air everyday. We inhale these all the time. Most often they are filtered out or the bodies immune system attacks them before we even know we've inhaled them. Often time healthy people will get a cold or chest congestion for about 2 weeks if they get histoplasmosis, but the body deals with it. In a person with a suppressed or compromised immune system it can be much worse. The fungus gets inhaled into the lungs and begins to grow spores. Eventually it spreads throughout the body, dissemination. It is not contagious. It can cause brain damage, lung problems, spinal problems, skin lesions, etc. The treatment usually consists of a strong anti fungal taken for about 1 year. There is a chance of relapse after the year of treatment, but that is rare.
We move on to the final diagnosis of Pernicious Anemia. This apparently is when antibodies attack the lining of the stomach and prevent the body from absorbing vitamin B12. B12 is important for the central nervous system. We get b12 from animal products mostly. With a deficiency, patients feel tired and weak. They often have nausea and vomiting because the nerves are being damaged in the stomach lining. With B12 injections, these symptoms usually disappear fairly quickly. In times of high stress, whether it be physical or emotional (even excitement), it is recommended that patients increase their B12 to prevent symptoms from returning.
We are now currently awaiting an evaluation for yet another autoimmune disease. Appointments are coming in the following weeks so I will fill you in as I get information.
To end on an inspiring note: I decided to call this "Antibody Ninja Girl" as an homage to my beautiful, amazing angel of a son. He has a difficult time seeing his mother go through so much. He feels helpless, but just wants to make things better. He has taken on an very strong interest in super heroes. To ease his anxiety about his environment he is constantly saving the world! It is adorable, and he is certainly heroic. If he believes super heroes can change the world, let's give it a shot. These antibodies are like ninjas in the night sneaking in and destroying healthy tissue in my body. We are out to end their destruction. Join me in the fight. Power to the people. Hahaha ok that's a little dramatic, but you gotta laugh at the little things in life. That's what makes it all worth while.
Here are some links for real information
Hashimoto’s Disease www.edocrine.niddk.nih.gov/pubs/hashimoto-thyroiditis.cfm
Type I Diabetes www.diabetes.org
Interstitial Cystitis www.ichelp.org
Epilepsy www.epilepsyfounation.org
Disseminated Histoplasmosis www.mayoclinic.com/health/histoplasmosis/DS00517
Undifferentiated Connective Tissue Disease www.hss.edu/conditions_14568.asp
Celiac Disease www.celiac.org or www.digestive.niddk.nih.gov/ddiseases/pubs/celiac
Pernicious Anemia http://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/
Autoimmune diseases aarda.org
Wednesday, September 7, 2011
Let me start with some background so we can get to know each other. I am a 28 year old wife and mother. My journey started at age 13. After being a lifelong athlete and overachiever I was stricken with Hashimoto’s Disease. This led me to a yearlong bout of fatigue, depression, and multiple illnesses until a diagnosis was determined. Once stable, I returned to an active lifestyle. I graduated high school and set out on my way to college with goals of completing a BS in psychology.
I remained active. I was a full time student, worked part time in food service, and a competitive runner of local 5-10k runs as well as a half marathon. My fourth semester I was sent to the Emergency Room after waking up to no vision while battling bronchitis. At the ER it was determined I was suffering from Type I Diabetes. After taking a short break from school to stabilize my new disease, I returned with the decision to double-major in nursing and psychology, all the while still holding down a job.
The next year I was diagnosed with Interstitial Cystitis. A few months later, my high school sweetheart and I were blessed with an unexpected pregnancy due to the fact I was believed to be infertile. To ensure a safe pregnancy it was, once again, recommended I slow my busy lifestyle. I remained working part time and lessened my course load.
I delivered a healthy baby boy nine months later in late October. The next semester I solidified an Associates Degree and forged on to reach my goal of nursing and a psychology degree. I also completed the certification program for Medical Assisting.
Shortly after delivering my son, I began showing signs of a new disease process. The symptoms included grand and petit mal seizures, rashes, weakness, extreme fatigue, vomiting, numbing of my extremities and much more.
I began a career as a medical assistant and continued online courses despite feeling ill, while continuing my role as wife, mother, and an avid runner. Eventually my symptoms got severe enough my family was forced to move closer to the larger support group of our extended family in hopes that the lower stress of a slower paced lifestyle would lessen these episodes. Unfortunately, that was not the case.
While working full time as a medical assistant and studying full time with online courses, things only worsened. I was told by doctors to withdrawal from school and begin the process of applying for disability. As I fought that idea at the age of 25, thinking it was a ridiculous option for someone so determined, I was eventually left with no other choice.
In the summer of 2008 I was sent to Mayo Clinic in Arizona to determine why my health was declining rapidly despite all efforts on my own part as well as my local doctors. Although the Mayo Clinic began treatment for epilepsy, they were stumped as to what the underlying disease was that was causing such widespread symptoms. I was sent home with few answers and told I needed to be closely followed until the full picture was in view.
The next year was extremely rough and loaded with specialist appointments, medical tests, a hospital stay, and the loss of the privilege to have a driver’s license. In November 2008 a biopsy revealed disseminated histoplasmosis. Following that, in February 2009, a tentative diagnosis of undifferentiated connective tissue disease was established with the possibility left open for the development of full blown lupus. In June 2009, I was diagnosed with a severe case of Celiac Disease. That discovery lead to weight loss and malnutrition.
Feeling hopeful that all these complicated symptoms were being explained and treated I felt some relief. I returned to work part time at a local bank to keep stress low, but giving myself a chance to get out and feel productive. I would feel better for a few months at a time and then symptoms would return. The most frustrating being fatigue, lack of stamina, body aches, head aches, nausea, vomitting, and other digestive issues as well as seizures. A return to the hospital in October 2010 revealed my pancreas was no longer producing digestive enzymes, hence I was not digesting food. Another discovery leading to weight loss and malnutrition.
A bout of seizures the summer 2011 along with continued digestive issues despite all efforts induced fears a yet another disease process. July 2011 I was diagnosed with Pernicious Anemia. This brought my grand total to 6 autoimmune diseases and 1 additional chronic condition of epilepsy. Here we are waiting for more answers. I am continuing to have trouble with food, nutrition, weight, and general feeling of bleh.
This blog is being started as a release. I have so many hopes and dreams, so many goals and aspirations. I hope to connect with people. To support each other as well as teach and learn from each other. A dream would be for this to spark interest for new research and treatment options. With everything I have been through, my life has made a complete 180. So much has been taken away, I just want to get something back.
Everybody has a story. It may not be disease, it may be family, or emotional, or mental, or financial trouble. We all need something to look forward to everyday. We all deserve happiness. It is a choice. I have lost so much, but I have gained so much. It has to be a trade off. I do not believe God gives you challenges and struggles to make you suffer. I believe there is a reason for everything, whatever you believe in. I want to open new doors and try new things to fill the holes and make something good out of all this.
Let this be an open conversation. I am not judgemental or political. I do have my own opinions and beliefs and I ask that they be respected, but I respect your beliefs and your opinions. No two stories are the same just as no two people will react the same or have the same point of view. Let's talk.
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