Dealing with Chronic Disease

For discussion of Chronic Diseases such as Obesity, Cancer, Heart Disease, Diabetes, etc.
Paul R.
Posts: 79
Joined: Wed Apr 23, 2008 7:17 pm

Post by Paul R. » Sun Nov 30, 2008 10:17 am

I wanted to start this forum as I have been having a hard time simply accepting the diagnosis of having a chronic disease, and I believe that this is where my anxiety and any depression is truly rooted.

You see, I have always had my health. it has always been a source of pride. whenever things got too hot to handle, or when obstacles seemed to great to overcome, I could always pull into myself and be thankful that I had my health. growing up, if I had trouble making friends, I could always lift weights or run and feel better about myself.

my good health was always a refuge for me. a safe haven.

some of you may have seen my posts in this forum, and in others. if you have not, i was diagnosed with autoimmune hypothyroid disease and have been on various medications since my original diagnosis 2.5-3 years ago.

i started on levothyroxine, changed to synthroid earlier in the year (based on extreme panic attacks that i was having), lowered my dose from 50 mcg to 25 mcg this past august, felt better, but still can't shake these anxious feelings entirely and sometimes depressive/ negative thoughts.

on thanksgiving, i changed my medication to armour thyroid, and felt phenomenal the first day, but now have caught a touch of the flu and feel like garbage.

i have also been hard on myself (as usual), and I don't know what to do.

i just don't feel like me.

i keep looking outside of myself for the answer. "Maybe if i change the dosage I will feel better", or "maybe if change medications"; thinking that the answer lies outside of myself.

i feel mentally clearer in these past few days since making the switch to armour, but the anxiety and self-defeating/doubting thoughts were all over me today, i don't know if it is just me or if this thyroid condition is causing me to have more problems.

so, though i apologize for the length of this entrance, but does anyone with chronic disease have any tips for coping?

how do you come to peace with something like this?

my counselor just keeps telling me to find a way, but i don't know how.

sandrakay
Posts: 14
Joined: Wed Nov 19, 2008 7:25 pm

Post by sandrakay » Tue Dec 02, 2008 11:35 pm

Paul, I am hoping this course teaches us how to cope. It is the worrying that drives us crazy. My therapist keeps telling me that it is self esteem and positive self talk that will help me through accepting and doing well. I have had type 1 diabetes for 44 years and have been searching for a way to motivate myself to take care of myself. She recommends self talk and rewording all those negative things we have learned over the years into positive statements and feelings. I am not there yet, but I am working on it and am praying that this program will give me a lot of strength and insight into gaining the control needed to live with a chronic disease. I have been reading abouth thyroid and about adrenal fatigue and found that both do effect our thinking a lot. If off balance, both can cause one to be tired, irritable, spacey.. in other words if you were able to get a handle on your anxiety before and are having difficulty now it could be your meds. Something to consider is to go to an Endocrinologist if you are not seeing one now. Let me know how you are doing and maybe we can at least encourage each other until we get where we want to be.

Paul R.
Posts: 79
Joined: Wed Apr 23, 2008 7:17 pm

Post by Paul R. » Wed Dec 03, 2008 3:19 am

thanks Sandrakay.

(for a moment there, I did not think that anyone was going to respond;))

I actually have been doing alot, this past year. I have always had anxiety- I just did not know it and it never became a disorder until the past 2 years.

Alot of it was triggered by a terribly toxic job that I had, trying to figure out my life's path, getting married, my wife wanting kids and me not being ready (namely because of said toxic job)(BTW- we are not pregnant and expecting 5/2009 :)), moving home, moving away from home, starting grad school while working full-time, my wife finishing her undergrad...shall i go on?

this all happened w/in the past 2-3 years for me (most of it in the past year), and through therapy I have learned that alot of my anxiety comes from commitment.

And that has always been a problem for me. It hangs over me until it is completed. Car loan, now a mortgage, student loan, heck- i won't even join a gym that has a contract; i will only go somewhere that i can pay in full- they all make me uncomfortable to the point where i will avoid them if i can.

i was tense and irritable and always hot, and had my synthroid lowered from 50 mcg to 25 mcg (the lowest dose) and felt better. Since this past Thursday, I have switched from synthroid to natural armour thyroid and must say, I am feeling better.

my main idea with starting this forum was discussing how some cope with being diagnosed with a chronic disease. i appreciate your feedback. i like the self esteem avenue. i was reading a recent article of People magazine with Michael J. Fox and his battle with Parkinson's. I know that it can always be worse. He had a quote about "becoming Zen" with the disease or "going crazy". I think that he has it right too.

i pray. i have read about a 10% chance of the disease going into spontaeneous remission within the first 4-8 years of starting treatment. although the number is too small to count on, i am thinking positively that "why can't I be one of the 10%?".

i am also looking into alternative therapies to help with my condition. The mineral Selenium appears to offer potential. Vitamin D looks interesting, as well. And ofcourse, emotional healing from anxiety, etc also seem to have an effect on the body science is only starting to realize and explore.

but in terms of the psychological component of dealing with a diagnosis of chronic disease, that is what i am interested in discussing.

Paul R.
Posts: 79
Joined: Wed Apr 23, 2008 7:17 pm

Post by Paul R. » Wed Dec 03, 2008 3:29 am

Sandrakay, God Bless you for fighting the good fight and hanging in there like you have. You also found this program, and see a therapist, which all indicate that you want to be better and live a fuller life despite the diagnosis.

I know that with diabetes, we are similar in that our immune systems are attacking us mistakenly.

for me, i think with my anxiety about commitment, and having to be committed to taking a pill every morning to feel normal, really has hit me hard. it makes me feel tied down on some level. trapped. stuck. married to a disease that i did not choose, do not want, but can do little to nothing about. We all know how the feeling of being trapped can open up a whole can of anxiety worms.

i know with diabetes, you understand (perhaps more so) what i am talking about. how is it that some people can take this in stride? is it self-esteem? what does your counselor say about self-esteem?

(to correct the above post, my wife and I ARE pregnant and expecting 5/2009!)

~*schnauzermom*~
Posts: 183
Joined: Sun Nov 13, 2005 9:24 pm

Post by ~*schnauzermom*~ » Wed Dec 03, 2008 12:00 pm

does anyone with chronic disease have any tips for coping?
Hi!

I have 3 confirmed auto immune diseases. Hashimotos Thyroiditis (July 07), Sarcoidosis (lungs and lymph node in my heart May 06) and AntiPhospholipid Syndrome or APS(August 08). (I also test positive for the Lupus Anti coagulant, which means I "may" also have Lupus) I have some symptoms, but not enough to give me that label.

In any case, I had to make amends to what IS and not what I lost or what I want. Sure I can throw a blood clot and stroke out, have a heart attack or a pulmonary embolism. Sure the Sarcoid can move to other organs and cause them to fail and ultimately kill me. I can't sit here and focus on that, I have SO much life I WANT to live! I do not know if anything bad will ever happen with the diseases either. They may just be and never cause problems. I am thankful that I can still see, hear, walk, think, talk, reason, be involved in family, friends, school, community, church. Sure everyday I am not bright, chipper and good to go, but I make the BEST of what I do have. I do what I can and that is all. I do not look at how hard it is, I look at all the good that is around me. I have a great husband, a loving mom, my sister (who also has an auto immune disease called ITP where she can spontaneously hemmorage, but she has blood tests every 3 months to monitor her situation), my brother inlaw, my step daughter, our church, friends, school...I can keep going on. There is so much good in my life that these disease really have NO room to take up residence in my thoughts.

I CAN'T have the diseases control MY life. I can't allow myself to become the disease. I can't think about what it "MAY" do to me when I still can do so very much for myself and others. Why think about the negative? I am me and NOT the disease and I WANT to live, so I do not focus on my diseases. I have many MD appts, I have probably been to more MDs than most people that are 60 years old, so what? I try to eat as healthy as possible, I do things I enjoy to do like drawing, painting, volunteering. STAY active physically and mentally! Do not allow the disease to label you! You are still Paul, you are NOT "HYPOTHYROID". NEVER EVER allow a label to be your identity! NEver identify yourself with the disease! You are not the disease. NEVER feel sorry for yourself as this is giving into it. I will never give in! When you dwell in the disease, the thoughts and feelings about the disease will consume you, then all you do is the disease and NOT you. You can't control the fact that you HAVE the disease, but you CAN control your thoughts, actions, emotions regarding your disease. You feel trapped because that is the way you see it. WE FEEL WHAT WE THINK, WE THINK WHAT WE FEEL. So what, you take a pill! I take thyroid pills in the am and an LDN pill at night. If that is what I need to do to keep going, SO BE IT. You are committed to eating daily, to drinking water, using the bathroom, brushing your teeth, dressing, using deodorant...SAME THING! I do not think it is all self esteem, it is how you SEE the situation and how you feel about it. This is about perception. If you make taking a pill more of a bigger deal than it really should be, it will overtake you, control you, trap you. If you just take your pill like a vitamin or see it just as simple as using the toilet, then it is no big deal. It is something that we do. We do not choose this, this is what is and we just need to do what we need to do. I do not like wasting 4 hours of driving to my pulmonologist MD every 3-6 months and then sitting there in his office for 2 hours, but I need to do it. I do not like driving 3 hours to my alternative medicine MD and sitting there for about an hour or more, but I do. I do not like to see my hematologist every 4-6 months which is a 20 minute drive to see him for 2 minutes, but I do it. I do what I need to do to survive. It is the small price to pay to enjoy another day, another birthday, another Easter, Thanksgiving, etc with my family. I can't see this as being stuck because it will cause me to feel trapped. I used to see it that way, but I just felt SO very helpless, depressed. I had to start seeing that even though I did not have 100% health, I still CAN walk and do not need oxygen, I have not been hospitalized because of my diseases and people say I look very good and "normal". I still have SO much LIFE in me, I have not LOST nothing! If anything I have gain more compassion and understanding. Sure I may not have perfect health, but I DO have health, I do have SO many good and beautiful things in my life than to sit here and feel down and sorry for myself. Look around, see ALL the good you have because I bet that you have so much happiness and good in your life.

In a side note, I also found an alternative medicine practitioner that has prescribed a medication called "low dose naltrexone" at 4.5 mg/per night. I take it for my sarcoidosis and hashimotos. (it has done nothing for the APS though as my blood tests still are showing HIGH PTT levels)I know that it is helping with the other issues as I feel much better. From what I have read about LDN, it modulates the immune system. I have been taking it for 2 months and feel better. Eat healthy too! No processed foods, too much preservatives and junk!(I limited my junk food like Starbucks and ice cream) Salads are great as you are eating LIVE enzymes. (I eat 2 per day) Also what I have found is that I need to monitor my pH (urine test strips) Diseases THRIVE in an ACIDIC environment. I drink apple cider vinegar (2 tbls) with 4-6oz of water and 1 tsp of raw honey mixed together, keeps the body alkaline.

Take each day as it comes. Live in the now. Do not think too far ahead in the future or dwell on things that cannot be changed otherwise you miss out on the present.

I do not get on the site often because I am a student and am trying to live life to the fullest. You will be able to do the same, live your life to the fullest!

Take care!
LizB
"Afterall, everybody only hears what he understands." by Johann Wolfgang von Goethe

Paul R.
Posts: 79
Joined: Wed Apr 23, 2008 7:17 pm

Post by Paul R. » Thu Dec 04, 2008 6:09 am

LizB,

You know, you have rocked my "world".

Thank you.

I want to print out your response and use it as a guide when I am allowing my perception of the disease to rule who I am, the way that I have used Lucinda's From Panic to Power to get through the worst of my panic disorder.

Its funny when you talk about focusing on the good; for I am reminded now of a Biblical quote of Paul and his advice on how to handle anxiety...and it centered on focusing on all things that are good: justice, love, peace, happiness...it now is clearer to me.

A doctor in the family suggested viewing the thyroid pill as a "vitamin" as well, and I certainly take a bunch of those. I have been trying to associate the pill with a vitamin, telling myself that I take it to feel better. It's a work in progress.

My main issue is how I view the condition as that there is something wrong with ME; something that I did not choose nor had control over. I know that this type of thinking is wrong, as I am fully capable of doing everything I want in life. I think that this perception is what is causing the conflict in me. But I really struggle with changing this thinking.

Mary Wargo
Posts: 274
Joined: Wed Feb 06, 2008 12:37 pm

Post by Mary Wargo » Thu Dec 04, 2008 7:21 am

LizB - What an inspirational post. It brings a lot of things into a realistic perspective for anyone with a medical condition. Thanks.

~*schnauzermom*~
Posts: 183
Joined: Sun Nov 13, 2005 9:24 pm

Post by ~*schnauzermom*~ » Fri Dec 05, 2008 4:17 am

Paul,

Thanks! :) I know in a short time, you will rock your own world. The disease does not make something wrong with you. We have no control over what disease we may or may not get. What will happen will happen. I have no family history of all the diseases I have, my mom, dad, grandparents, etc never exhibited auto-immune illness, so where it came from who knows. It is natural in the beginning to feel like a "defect", but you are NOT. Seeing yourself as wrong or as a defect is NOT who you are, it is how YOU see yourself. Again, this is perception. Work on changing your perception. See yourself as you REALLY are (capable, hard working, great husband, son, friend, intelligent, trustworthy, funny, caring, loyal, etc) Look at the list of ALL the things you really are, write them down and look at that list whenever you starting thinking or feeling wrong or defective.

Do not view yourself as something is wrong with you. There is nothing wrong with YOU. Paul, the person inside. Sure your body (and mine) for whatever reason is doing what it is, but this is not the end all, be all. Take care of your body the best you can, treat it like a temple, respect it. Treat your body with compassion, do not be mentally hard on it or yourself. Being in a positive mind can have a tremendous positive effect on your health, mood, thoughts, feelings, etc.

When each of my disease presented themselves, I needed to "mourn" a healthy self and accept that I have one more thing (one more MD, one more appt, & maybe one or more meds) to deal with. This acceptance did not happen overnight, it is work but it DOES happen. You will come to a head and accept what is and then this will just be a blip, the extra "vitamin" pill you take in the AM. ;)

Since you had mentioned Biblical, maybe religion, faith, a belief, or something to believe in may help you work through this. I personally have put my trust in my faith & beliefs. For me, this has helped me deal with my health issues, accept what is and feel at peace.

This disease thing really is like mourning the loss of a loved one. We go through stages, shock, anger, denial & isolation, bargaining (we should have done this or that), depression and then acceptance. My first dx was a huge blow that took several months to recover from. The 2nd dx was not as bad (as I thought this one won't kill me, so I saw the positive in it) and the 3rd, as scary as that APS is, I figured it was just another thing to deal with. I actually think I have had this one at least since 2002 when I have a DVT in my left calf because my hospital stay records for that showed high PPT, but I also smoked and was on birth control which can cause a blood clotting episode, so my MD at the time wrote it off to BC pills and smoking. Anyhow, it is what it is. I just keep plugging and chugging. You will too. You will go through the stages of mourning for your old self and really see that nothing is wrong with you (YOU still are the SAME person) and this no longer will be something that defines Paul as defective (or wrong).

Thanks Mary. :D

Keep on, keeping on! :D
"Afterall, everybody only hears what he understands." by Johann Wolfgang von Goethe

Paul R.
Posts: 79
Joined: Wed Apr 23, 2008 7:17 pm

Post by Paul R. » Sat Dec 06, 2008 4:41 am

scnauzermom,

thank you once again for taking the time.

you know, doctors are great at diagnosing and often treating these kind of things, but no one prepares you or guides you on the emotional side of this.

Its like: "Ok. You have Hashimoto's. Take this pill every morning and see you in 6 months for a blood draw."

But lacking is that now that the patient is dispensed with this information, besides treatment, what does one do with it, ya know? no one teaches you how to deal. "You are just going to have to find a way" is all I keep hearing.

Now, it is only recently that I have been struggling with this. I was originally diagnosed with autoimmune thryroiditis back in the summer of 2005(6?). I was sluggish, and was having anxiety attacks because of my job and when I went in to the doctor for what I thought was food poisining (I did not know about anxiety then), he found my TSH at 31.

i was started on 50 mcg of levothyroxine, and responded fine and felt so much better for the next 2.5 years.

then, around this time last year I began to get strange sensations in my body. tight chest, dizziness, blurry vision, headaches, etc. the professionals that i talked to mentioned that these symptoms sounded like anxiety. i blew that information off, but the feelings kept occurring. these sensations scared me, and one night i stopped and centered all of my energy on how bad i felt, and had my first panic attack.

that was this past march. this, in turn created fear of when this would happen again, which only aggravated it more. heck, i spent one night in a buffalo winter walking the streets for 2 HOURS until i finally calmed down enough to return home and go back to bed. luckily, my doctor had placed me on FMLA, so I was able to deal without having the pressure of having to go to work.

but i was under alot of stress. my job was horrible and really preyed on my fears (threats, bullying, gossipping and backstabbing- and that was amongst my coworkers and supervisor), i was recently married, started grad school full-time (while also working full-time), my wife was going back to finish her undergrad while also working full-time, my wife was pressuring for starting a family, pressure to buy a house (while I simply wanted to get out of the toxic job), we had moved from VA to Buffalo and had the change there...i was unsure about finding a job after i graduated in the buffalo, ny area and basically felt trapped- by everything and everyone.

alas, enter- anxiety and panic.

right or wrong, it was also at this time that i began to seriously ponder what role my thyroid was playing in all of this.

i was convinced that somehow, in someway, the thyroid must be causing this problem.

repeated blood tests showed that things were working great, TSH was at 1.7, but i was really starting to notice how i felt tense all of the time, i was always hot, and had to really work at being relaxed. i was irritable. so, after doing some reading my doctor switched me to synthroid.

i eventually left this horrible job, my wife moved back to VA to her old job and I stayed in Buffalo this past summer to finish my grad studies.

i finally met a doctor in August (my old one moved to Canada), and she listened to my symptoms, my concerns, and asked if I wanted to lower my dosage of synthroid from 50 mcg to 25 mcg. as it was an answer to prayer, i agreed.

i switched at the start of this past august and felt great. my tension and irritability left the very same day as the dosage decrease.

the next month of the lower dose proved challenging, as my body now had to adjust to having 1/2 of the previous T4 in my blood. Digestion was rough, muscles and joints were sore, and anxiety was my biggest heckler through it all.

eventually (mid-september), i felt better, but still lacked something. physically i had some strange feelings (cold feet, sensitivity to cold, foggy thinking/ trouble concentrating) and just a plain old negative attitude.

so i did some reading. i looked up mary shomon and began to read aboutthyroid.com. i found dr. mercola on line and read up on his thyroid topics. through it all, armour thyroid kept appearing.

perhaps the most interesting was how the added T3 (and possibly the lesser known T2 and T1) helped so many patients feel better especially with MOOD and COGNITIVE FUNCTIONING in the majority of patients.

i was never particularly sold on synthroid or levothyroxine, so, being blessed with a willing doctor, i made the switch to armour this past thursday (thanksgiving).

the dose is the equivalent, so it is 15 mg or 1/4 grain.

now, the first day, i felt like me again...like i had not felt in years. bright, awake, mentally clear, good body temperature, breathing was easy again, I was giddy. my mood DID improve. gone is the underlying negativity and it has been replaced with my more natural positive outlook.

since then, i caught a cold, and my mental clarity has since suffered. I am not sure if this is an adjustment period, or if i need more. also, since i felt so awesome on the first day, i wonder if a combination of armour plus additional synthetic T4 might not be the answer (but it was only 1 day)...argh!

(by now you can probably see where my anxiety comes from!)- i am trying to find the right dose/drug/ whatever for me just to feel normal/ like myself again.

~*schnauzermom*~
Posts: 183
Joined: Sun Nov 13, 2005 9:24 pm

Post by ~*schnauzermom*~ » Sat Dec 06, 2008 6:18 am

Paul,

Hasimotos is not like having hypothyroid. Our Hashi thyroids go up and then can go down. I too notice when the meds are too much and lower it for a few days to see what happens. I have an alternative MD that allows management of my meds not only on lab results, but how I feel. I used Armour, but it left me a little sluggish. I am on synthroid and have needed to lower from 75mcg to 50mcg. But still I have days where I feel anxiousm jumpy, difficult to breathe, so the next amd I just take 25mcg for a day or two and feel better. Then I go back to 50mcg and see how it goes. My MD has been wonderful with working with me, more so than regular alloapthic MDs.

I also have learned not to get bent out of shape when I do not feel up to my game. Maybe the mental clarity is a bit fuzzy for a few days...OH WELL. I do not stir over it because I end up feeling depressed and as if I am not myself anymore. I realize that I do the very best I can do and that is all I can ask out of myself or anyone else. I am wondering maybe your adrenals may be a bit overworked and fatigued. I had adrenal fatigue and even when I was on thyroid meds, I still felt not in my game. See if your library has this book Adrenal Fatigue, The 21st Century Stress Syndrome
(Author, Dr. James L. Wilson, N.D., D.C., PhD.. When I read it, I was like THIS IS ME! Maybe your library has it.

AS far as Mercola, I went to his office. I was told to take my Armour, DHEA drops and Pregnenelone drops. Not even a week of this wonderful regemine I experienced full time anxiety, rapid/skipped heart beats, shakes, nausea, it was awful. I KNEW this was not anxiety, but all the crap Mercola's people told me to take. I was unable to reach his MD staff and needed to call my GP and he told me to immediate stop taking all the drops. My husband also felt goofy with these drops. We both stopped and never went back to his office.(this is after we both had the $2,200.00 work up. This price is EACH = $4,400.00!) We felt it was to general, one size fits all approach to gaining health. Very disappointing. Now I work the another natural MD and feel better than I have was feeling in several years. Sure it is not like when I was 25. Face it, I will be 39, so if I can feel like I am 30, I will take it in a heartbeat! ;)

Be patient and read whatever you can. An informed patient is the best advocate. If you feel your MD is not doing you any justice, move on, find another.

Good luck! :)
"Afterall, everybody only hears what he understands." by Johann Wolfgang von Goethe

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