Saturday, March 30, 2013

Gettin' Your Craft On


So, I’ve been reading a bunch on the forums and one of the threads was about creative outlets and coping. There were so many good ideas on there. Much of the time, many of us are housebound or mostly housebound and sometimes even bed bound, so it’s really helpful to find new and interesting ideas for things to do instead of the same ol’ same ol’, like surfing the web, researching our weird symptoms, and social networking.
Some people enjoy crocheting and knitting, something I’ve always wanted to learn. Some enjoy reading which I do a lot of. Some enjoy painting, art journaling and getting their craft on.

I like to scrapbook when I’m up to it and have the time. Sometimes my scrapbooks don’t even have any pictures. The following scrapbook is one I started on a while ago (haven’t finished yet) and is an inspirational scrapbook. I found all sorts of inspirational sayings and Bible verses that speak to me on the net. I placed them decoratively into a spiral book that I am going to fix up so that it can stand on a shelf and I can flip the pages daily. Here is a sample of what I’ve been working on:


(Cover)
 




 
 


Enjoy!!
Hope each and every one of us can find our creative sides and get our own craft on!!
We might seem helpless at times, but we are never hopeless!!




Tuesday, March 26, 2013

Top Ten Tuesdays


I’m giving a shout out to https://www.facebook.com/#!/LupusAndMe?fref=ts today. I do not have Lupus, but I so sympathize with those that do. I do however suffer from a chronic illness (POTS) and absolutely love the encouraging words I find on this site daily. Check them out on Facebook!

Here is my list of Top Ten pics as found on Lupus and Me that have given me encouragement, laughter and hope! Keep up the great work, Lupus and Me J
 
 
 
 








 
 
 
 
 



Perhaps the last photo is one that is most resonating at this present time in my life, and it is my wish that it brings hope to us all.

WE ARE NOT ALONE!!

We might be helpless at times, but we shall never be hopeless! J


Tuesday, March 19, 2013

Top Ten Tuesdays


I’ve been feeling a bit better as of late, at least on the lower end of the “crappy scale”, and since I wanted to post something more positive, here it is:
May you all be blessed today and always J
Top Ten Biblical Verses That Comfort Me
1.      “The Lord bless thee, and keep thee: the Lord make His face shine upon thee, and be gracious unto thee: the Lord lift up His countenance upon thee, and give thee peace.”—Numbers 6:24-26 (KJV)
2.      “…but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”—Isaiah 40:31 (NIV)
3.      “...This is what the Lord, the God of your father David, says: ‘I have heard your prayer and seen your tears; I will heal you.’”—2 Kings 20:5 (NIV)
4.      “Be joyful in hope, patient in affliction, faithful in prayer.”
           —Romans 12:12 (NIV
5.      “God is our refuge and strength, an ever-present help in trouble.”
          –Psalm 46:1 (NIV)
6.      “My flesh and my heart may fail, but God is the strength of my heart and    my portion forever.” –Psalm 73:26 (NIV)
7.      “Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” –Matthew 11:28 (NLT)
8.      “The Lord gives his people strength. The Lord blesses them with peace.”
           –Psalm 29:11 (NLT)
9.      “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
           –Jeremiah 29:11 (NIV)
10.    “I can do all this through him who gives me strength.” –Philippians 4:13 (NIV)

Sunday, March 17, 2013

Small Victories


When one is suddenly struck with some weird-off-the-wall illness that nary a doctor can figure out, so we have to do all research on our own and figure out how to live a semi-normal life…we tend to learn to depend on small victories.

My Big Handsome had a conference he had to go to a couple counties up (few hours from home) for work. We decided to turn it into a mini-beach vacation, plus we could get in a small family reunion as well with the in-laws and extended (military) family that happened to be visiting the states from Germany.

While Big Handsome was at the conference, I was to take the kids to the local Art Museum. I decided that this is what we would do as I am teaching an Art History class next year, and who doesn’t enjoy an Art Museum (except for those of us who have a hard time driving on our own, driving on our own in a new town, driving on our own in a new town with a bunch of freaking one-way streets, standing for long periods of time, and just plain freaking out when put in new situations)?  This means that I would have to drive, with the kids, on my own, in a town I’ve never driven in, did I mention the freaking one-way streets??!! Mind you, I did do a bit of research beforehand and attempted to commit to memory the satellite map where I’d be going (which can be dangerous for a normal person, much less one with frequent brain farts). And, no, I don’t have one of those fancy phones that one can talk to or get GPS or any of that really cool stuff. Still though, for someone that doesn’t even drive locally, this was definitely going to test my, well, everything.

I began to feel the anxiety earlier in the week. The morning we left I just rode in the car, doubled up on meds of course, and hoped that everything would turn out ok. We arrived at the convention center where we dropped Big Handsome off and our choices were to pull around the block and park for 2+ hours or head off on our own to the museum.

We chose the latter. We made it there safely after a few necessary turn arounds (which under normal circumstances can send me into a complete panic attack). We had a wonderful time at the museum, viewing many art pieces from the artist’s that we will be studying soon. I was so glad we went. I didn’t panic the entire time. We had just enough time to casually walk the entire museum with a bit of time to spare in order to get back to the convention center on time to pick up Big Handsome.

I must say that I was so stoked that I was able to take the kids to the museum and not freak out!

We all need to look forward to, learn to appreciate, and never take for granted the small victories J

Tuesday, March 12, 2013

Top Ten Tuesdays


Well last week Tuesday came and went for me and I didn’t even realize I hadn’t posted a Top Ten until Thursday. I thought about posting then, but just didn’t have the energy. Anywho, Daylight Savings Time really bites, but here is the new Top Ten in no particular order:

Top Ten Symptoms That I Struggle With Daily

1. Bradycardia: When my heart rate gets too low and my brain seems to tell my heart “Get jumpin’, get pumpin!” and it feels like my heart is going to pound out of my chest; it takes my breath away sometimes.

2. Sleeplessness: When I can’t get to sleep and even worse, can’t stay asleep. I toss and turn all night usually only getting about 2 hours of continuous sleep at a time. When I take a nap in the afternoon, this is the only time I get a few hours of uninterrupted and restful sleep. Not getting enough sleep is not good, it makes me irritating, oops…I mean irritable J

3. General malaise: I just don’t “feel” like doing anything. If I could, I’d just lie in bed, in my comfy, warm, cover-cave and live forever. I can’t do that, I know, but sometimes I think it would be so nice to just be in bed, sleeping peacefully only to wake realizing that this illness has been a terrible nightmare.

4. Tinnitus: This ringing in my ears would like to drive me insane sometimes. I can’t figure out what it’s all about. It is just plain annoying and worse in the morning and at night. I have also acquired hearing difficulty which I’m not sure is related to the tinnitus or not. Maybe I can’t hear quite as well, because I am too busy listening to the symphony of crickets in my head. If they only knew Tchaikovsky, or at the very least, The Fray! J It’s not so funny when your kids yell out before starting to watch a movie with the family, “Hey, did someone remember to turn on the subtitles for the hearing impaired?” Ok, maybe it is a bit funny, at least in our house.

5. Fatigue: I feel like an 80 year old in a 40-something body. I wake every morning with aches and pains. My back is so sore; I’m seriously considering buying into a fad mattress (you know the ones I’m talking about… TempurPedic®, Sleep Number®, etc.) Some have told me to exercise, and I would, if it didn’t leave me feeling like I’d been run over by a truck the next morning, and that’s after a whole 20 minutes of yoga on the Wii Fit Plus. So pathetic!

6. Anxiety: This should probably be at the top of the list, but I said this was in no particular order. I experience this almost on a daily basis especially if I am going to be leaving the house and/or driving. As of late, I’ve had to be out of the house 4 out of the 5 school day week. I don’t know how people who work with this illness do it. I guess, you just gotta do what you gotta do.

7. No appetite: Not sure if this is part of the illness or medicine related. I am just rarely hungry. I’ve always been one of those types that eat to live, not live to eat. I know I should eat, but never know what to eat as I’m not really hungry for anything specific. Add to that, lack of energy to make anything and you’ve got very little eating going on.

8. Nausea: This is of course related to number 7. How can one really eat all that much when nausea is a constant? Big Handsome loves to watch the cooking shows and there are times when I can’t even do that, just the thought of food makes me want to hurl.

9. Tachycardia: Quickening of my heart rate for no apparent reason. I can feel it happening and now I’m so used to it, it’s just there in the background.

10. Chest pain/discomfort: I experience this on a daily basis. I’ve reported it to the doctors only to get responses like, “That pain has nothing to do with your heart.”, or “You’re too young to have heart problems.”, or “That has nothing to do with POTS.” Just another symptom that over the years I’ve unfortunately gotten used to.

I know that the above list might not sound like much to some as there are many with POTS that suffer so many more debilitating symptoms. This list of mine certainly isn’t a full-on list of my symptoms and there are many more that I could list. I am thankful and grateful though that I don’t experience syncope (fainting), blood pooling, and a host of other symptoms that really stop people in their tracks. The ones I have are enough for me and I wouldn’t wish even this short list on my worst enemy.
I know that I can be a “Negative Nelly” and I hope to post a more positive list one of these coming Tuesday’s, but for now, this is what I’ve got; I write what’s on my mind at the time.

Monday, March 4, 2013

Twenty Questions…and answers


Sometimes friends, family or people in general want to know what it’s like living with a chronic illness, or what my hopes and dreams are, or what I miss most. Here is a sampling of those questions and answers from my perspective.


1. What’s it like living with a chronic illness?

Well, I must admit that having somewhat of a diagnosis is nice, but I have to say that life as I once knew it is gone. I’ve had to go through a grieving process which I still believe I am in. I have learned the true meaning of “one day at a time”, sometimes for me, it’s one second at a time. I have had to try to find a “new normal” and that can at times be really challenging. I don’t want a “new normal”, I want my old normal. Heck, at this point, I’ll settle for half-way normal J

2. What have I learned through all this?

I have learned to appreciate the small things like waking up each morning, I’d rather that than the alternative! I’ve had to learn that, I am indeed, NOT in control anymore. I’ve had to learn to ask for help and rely on others, something I am definitely not used to. I have learned that I can and will live with this, and do it to the best of my ability.

3. What is the most disappointing news concerning this illness?

The most disappointing news is that there is no real prognosis. I have had to do much of the research on my own as many doctors in my area do not even know what POTS or Dysautonomia is, much less how to treat it.

4. What do I do to get out of a funk?

When I’m in a funk, I try to remember that while I cannot control my physical situation, I can control how I react and respond to it. I can choose to find joy and happiness in the things I can do. I try not to dwell on the negative, and sometimes that is so hard. I do admit to occasional breakdowns and many pity parties where I am the only guest L If I’m really in a funk (what most of us call a “flare”), I pray a lot, read, listen to uplifting music, meditate and try to rest through it.

5. What would I like to do if I was not ill?

Honestly, I’d be quite happy if I could take my teenage daughter to the nearest Starbucks, have a coffee and a day of shopping. I really don’t like to shop, but I know that that would be something that she would love to do, and I’d gladly do anything to make her happy. I would also like to enjoy life with my family once again. I would love to be consistent at just about anything. I would love to be able to drive…where I want and when I want. I would love not to have to rely on others so much. I would love to give Big Handsome a break for once.

6. What do I miss most?

I miss doing what I want, when I want the most.

7. What have I done that I never thought I’d do with this illness?

Start a blog. I really don’t think I would’ve started one if it hadn’t been for the hours spent in bed, online instead of out of the house enjoying life. I’m glad though, all the same. Something else I never thought I’d do after my illness was going on a cruise. My husband and I celebrated our 20th anniversary on a Caribbean cruise and are looking forward to celebrating our 22nd anniversary on an even longer Caribbean cruise this year. I took a bit to get my meds sorted out, but once I did, we had a wonderfully memorable time together. Our first cruise was really our honeymoon celebrated 20 years later as I was in college when we got married and didn’t have the time or the money for a honeymoon. I must say that it is such a blessing to be on a continuous honeymoon for 20+ yearsJ

8. What I think about the majority of doctors I have seen?

I think the majority of doctors, save my current GP are all complete idiots! I do have some bit of respect for the knowledge that they incurred through years of med school, but somehow, I find each and every one that I’ve seen to be severely lacking; whether it is in compassion, general bedside manner or just plain knowledge of disease and the body. I truly believe that everything happens for a reason. We are sick because there is a reason, an underlying condition. I think all too often doctors are only knowledgeable in treating the symptoms and not the illness as a whole, not treating us as a whole. If we don’t fit into their little box, or their med school books, well, we are SOL! It is really unfortunate and has left a really bad taste in my mouth.

9. What is the biggest adjustment I’ve had to make?

The biggest adjustment I’ve had to make is to learn to rely on others. I like doing things my way and I like being in control. I think someone upstairs  had something else in mind for me J

10. My favorite show?

I used to love medical shows, like House and the like. Now, I can’t even watch those anymore. I like to watch benign shows now; shows that I don’t have to think about, like the shows on HGTV. Since even little things set me off, I find it hard to watch murder and mayhem, medical shows, reality TV, etc. I admit that I do like to watch TV drama series though. I enjoyed “Brothers and Sisters”, that American Teenager one (can’t think of the name), British shows like, Bramwell, Downton Abbey, Doc Martin. When I watch something, I just want it to be numbing and I don’t want to have to think too much about it. Lame, I know, but when I have time to watch anything, it’s usually right before I go to sleep, so I don’t want anything too stimulating.

11. My favorite song?

 I just discovered Pandora and love it. I have new found favorites such as, The Fray, Coldplay, Daughtry, Nickelback. I guess they aren’t really new found favorites as I’ve always loved their songs, just didn’t know who or which band played them.

12. My favorite saying?

I have two favorite sayings: This too shall pass which I have tattooed on my inner left wrist to remind me of my late, beloved mother (she passed away 9-14-12). This saying is something she would always tell me when things got tough. She was a tough woman. A woman I admired and loved with all my heart. A woman that fought for seven long years after a botched hernia surgery. She went from being a relatively healthy, always vibrant woman (married to my father for almost 50 years, she passed almost one month to the day before their anniversary) to being an invalid on a feeding tube with only one lung; all because a doctor screwed up (I’ll have to save that story for another post). The other favorite saying is of course where I got the title to my blog from. It just came to me one day out of nowhere. I might be helpless at times, but I am never hopeless. Quite frankly, that is my mantra these days. With the love of Christ, I am never hopeless, and that is such a wonderful truth and feeling all rolled into one.

13. What do I do as far as work and career?

I began a career in Elementary teaching after college. I only taught a short three years before Big Handsome and I decided to enlarge our family. Since then, I have homeschooled my two children, now teenagers in high school. I’ve always quasi joked that had I had a job and my children went to school, I would’ve had to quit and homeschool them after my diagnosis anyway, so I skipped that whole step. I thoroughly enjoy teaching my children at home and wouldn’t have it any other way. They make me so proud!

14. Something you might not know about me?

Something many might not know about me is that I would love to one day open a coffee shop/bookstore. I would love it to be something along the lines that you see in movies, where there are shelves and shelves of books, an armoire with board games, and velvety couches and chairs all around and  people can just come in, relax with a good book, and a great cup of joe!

15. Something I really miss?

 I really miss driving…just going where I want to go, when I want to go.

16. It bothers me when people say…   

It bothers me when people say “Wow, you look great, have you lost weight?” First off, I’ve never really been overweight, so what are they trying to say?? I do take the compliment graciously, but in my head I’m thinking…”If I felt as great as you seem to think I look, I’d be on top of the world!”

17. The biggest surprise for me

One of the biggest surprises to me is that there are so many doctors out there that don’t know about POTS or Dysautonomia. I mean, how are there thousands of us on line with these same issues that nary a doctor can figure out? Boggles my mind!

18. What I’ve learned so far

 I’ve learned so far that you have to be your own advocate when you are diagnosed with an invisible illness. When there are few doctors that know anything about your illness, of which there are few, you have to research on your own and find things that work for you. I’ve learned that a good support system is essential and that friends and family might not always understand, but there are so many sites out there online with people just like me. That is such a comfort.

19. What I want most in life

What I want most in life is to gain control, or as much of it as I can with concern to my health and quality of life.

20. What I look forward to

I look forward to beating the odds!

I might be helpless at times, but I shall never be hopeless J