My Highs and My Lows

I live with chronic pain everyday. It has become part of me. As time goes on, I get to know it more and more. I've accepted it and have given up on doctors... for now. Was that a good decision? I don't know... it is all very confusing to me. I was tested many times for different things. Sometimes I wonder if the doctors even know how to help me. It feels like a guessing game. It is very frustrating because it is such an ongoing process, without any progress. On the other hand, what if I can get better... what if they eventually find something wrong with me that can be fixed. Should I give up or keep searching for an answer? I spent two years looking for an answer and was eventually diagnosed with fibromyalgia and lupus. Sometimes I feel sad... sometimes I feel hopeless and depressed, but I know that, for my own well being, I need to keep going. I don't want to live a sad and unhappy life anymore. More than anything, I want to be happy. I try to stay positive, despite my pain. I've learned a lot about myself, through all the suffering. I've learned that I am important, even though I never thought I was before. I've learned that I actually like myself.

Chronic pain is a horrible thing to go through. Yet, even so, I would have never wished for anything different. I've learned to appreciate things, in life, that I have never really paid any attention to before. I now look around at the small things in life.. like the changing colors of the leaves in the fall, the blue clear skies, squirrels running out of the trees, low pain days, and realizing I can do anything with the rest of my life as long as I try. I am so happy to be alive and have the opportunity to get to know myself, even more, for the rest of my life. I've felt sadness for so long, now it is time to be happy.

Things that help me stay positive:

• my boyfriend - someone positive to talk to
• nature
• hobbies
• listening to music
• reading positive quotes
• expressing myself through blogs and YouTube
• exercising

It took me 30 years to realize that I am important and now I'm the happiest I've ever been in my life. Can you relate? What are some things, in your life, that make you happy?

Ways to support someone with a Chronic Illness

When I first started experiencing chronic pain, I had no idea what was going on, nor did the people around me. It was very confusing for everyone and definitely a learning experience for us all. If you know someone that suffers from a chronic illness, these things may help you in supporting them emotionally and/or physically.

• Get to know the illness - Try to take this time to learn about the illness together. Learn what it is, things that trigger it, coping skills, and pain management techniques. 

• Understand that it is real - Even though the pain is not visible, it is there and it hurts. Just knowing that the people around me understand that it is real, makes me feel less alone.

• Be a good listener - I feel so much better when I have someone to talk to about how I feel, things I'm going through, and my stresses. One of my triggers is stress, so having someone to talk to really helps.

• Help out - Offer to help around the house, cook meals, clean, shop, etc. Anything to help the person feel that you are there for them, when they are not physically able to take on everything for themselves. 

• Have patience - Try to understand that the person suffering with a chronic illness could be going through many emotions, such as anger, sadness, depression, etc. In result, these emotions could sometimes cause the person to feel or act different. I tend to become more irritable and upset when I am hurting the most. During these times, it helps when someone lets me know or feel like they are there for me. 

- What are some things that help you feel supported by a loved one or friend, when suffering from a chronic illness?

Ways to Cope with Chronic Illness

I know when I started experiencing chronic pain I felt very alone and scared. I want to share some coping skills, I've learned along the way, that have helped me cope with this chronic illness:

•  Reach out for help- You can find a support group or connect with people online that are going through the same thing as you. This helped in making me feel less alone, in knowing that other people are going through the same thing or something similar to what I am going through.
• Write in a journal or start a blog- I started a blog to write about what I am going through. It helps me to write down my feelings and works as an outlet to my emotions.
• Distract yourself- Try reading a book or watching a movie to get your mind off of everything. I love watching movies and find myself watching one everyday. Thank you Netflix and Redbox! =)
• Find relaxation techniques that work best for you- Some things that I like to do are drink rooibos tea, apply my heating pad, get a massage, stretch, use breathing techniques, and/or take a hot shower.
• Exercise- I love the way I feel after exercising. Any little bit helps...I know when I first started experiencing chronic pain, even taking a walk was too challenging for me. Yet, I took it really slow, then built myself up to whatever my body could handle. I find it is very important to listen to your body to prevent any additional pain. 
• Try to get enough sleep- When I get enough sleep I always feel a little better. It makes me feel happier and feel like I have a little more energy. Sometimes I have trouble sleeping, but I have found it helps to stay on a sleeping schedule.
• Have fun- Try doing an activity that you enjoy. I like to go on Pinterest and read funny quotes. That is always a good time for me, when I am physically unable to go out and do something.

-These are some of the things that have helped me. What are some things that you do that have helped you cope with your chronic illness?

Moving Forward

Yesturday, I had a Drs visit with my Rhumetologist. He went over my results, letting me know that the iron and Vitamin D deficiency was corrected, and asked how I was doing. I told him that I felt the same. My hair and eyebrows have been falling out more and more, as time goes on, and I have been feeling SUPER tired. He suggested that I start taking Lupus medication because there wasn't any change in the way I have been feeling, so that is what I am going to do. I want to feel better. I realize that I need to do whats best for myself and I will never know, unless I try. He said, it takes about three months before it fully kicks in. Even though I am taking this step forward, I am still very scared, but all I can do from here is hope for the best...

Emotional Support

Emotional support is a very important thing. I didn't realize this until I began to experience chronic pain. It was a very challenging part of my life. I found myself going through different stages, some of which were fear, worry, sadness, anger, and finally acceptance. Once I accepted my pain and suffering I began to feel emotionally stronger. At this time, I began searching for different ways in which I could cope, as well as ways to manage my pain.

I knew I needed to find people that I could relate to in order to get through this challenging time. I found this on YouTube, Google+, and Twitter. Online I can reach out to so many people all around the world that are experiencing the same thing or even something similar. This helped me realize that I am not alone in this whole thing, which helps me stay in a more positive state of mind. I have also been able to connect with people that aren't experiencing the same thing, but yet still continue to give me their continued support.

There are so many kind people in this world and I am grateful for this. I encourage you to reach out to people, if you haven't already. Emotional support is something that we can give to each other and sometimes not even know how huge of a positive impact it can make on a persons life. It did for me...

Blood Test Results

I just received my blood test results yesterday. My vitamin D levels are now normal and I am no longer anemic! YAY! I was happy to hear that, but at my last visit the Dr. told me that if my levels were corrected and I still wasn't feeling better, than he would have to start treating me for Lupus... Well, I don't feel better and I don't feel worse... I feel exactly the same, so I guess it is the Lupus and Fibromyalgia that is causing me to feel like this. Today I'm having nerve and muscle pain, as I often do and let me tell ya, it's not fun! Even so, I feel much better than I did a year and half ago. I feel like I've gotten to know my pain a little more... I know what reduces the pain and that the flare will eventually pass. 

Some of my symptoms include:

• Nerve pain
• Muscle pain
• Allergies
• Fatigue
• Swollen veins
• Anxiety
• Joint pain
• Headaches
• Muscle spasms
• Brain fog (sometimes)
• Heart palpitations (sometimes)
• Weakness
• Popping and cracking of the joints
• Hair loss
• Autoimmune issues
• Insomnia
• Sensitive to sound and light
• Abdominal pain and bloating (not as often)

-These are the symptoms that stand out to me the most.

Food Cravings

Mmmmm that cookie looks good! :D

During my first Rheumatology appointment, the doctor prescribed me iron and vitamin D supplements. He also recommended that I take a multivitamin on top of that because I am most likely deficient in other vitamins, as well. I visited my local health food store and purchased a multivitamin in a liquid form. (I like to buy liquid or powdered supplements because they are known to absorb easier and faster). I bought Nature's Plus Source of Life Gold Liquid. It was so EXPENSIVE... but was supposed to be a good one. I continued to take it for two weeks. It was a great multivitamin, but one thing continued to bother me. I was recently diagnosed with mild Lupus and in the past I have read this about Spirulina (Blue-green algae) ...

“Auto-immune diseases” such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), pemphigus vulgaris (a skin condition), and others: Blue-green algae might cause the immune system to become more active, and this could increase the symptoms of auto-immune diseases. If you have one of these conditions, it’s best to avoid using blue-green algae." (WebMD.com) I didn't feel comfortable in continuing to take it daily, so I stopped for a couple of weeks.


During those two weeks, I noticed that I was craving a lot of sweets and carbs! Just recently, I started taking another multivitamin (Garden of Life Vitamin Code Liquid). This multivitamin has everything I need in it without Spirulina, which is a plus. Once I started taking it, I noticed that my cravings have subsided once again. This had me thinking, "hmmm... those cravings must be coming from my deficiencies." I read some information and found that it could be one of the reasons I am having these cravings.


-If you are having cravings for certain foods, this might be one of the causes for you, as well.

Sleep

Most of the time I sleep ok, while other times I have trouble. For the past three days, I haven't been sleeping very well. When I finally do get to sleep, the next day, I feel as if I went through the night laying there awake with my eyes closed the whole night. This happens once and awhile, but last night was different... I closed my eyes and instantly went to sleep. In the morning, I woke up feeling as if wanted to go back to sleep... but I didn't, I got up and actually felt pretty good. Sleep is SO important and I can definitely feel a BIG difference when I do get more of it. Here's the tricky part though, sometimes I feel sleepy if I sleep too much and have more energy (still sleepy) when I don't sleep enough. I kind of have to hit that good medium and last night I did... Cheers to good sleep! Zzzzzz

Things I do that help me sleep:

• Drink decaffeinated tea- My favorite teas, at the moment, are Rooibos and Chamomile tea.
• Keep regular sleep habits- Like a baby... I too need to stay on a sleeping schedule, if not it throws me off.
• Keep the bedroom dark, quiet, and cool. 
• Avoid daytime naps- If I feel like I'm getting sleepy during the day, I set the alarm to avoid over sleeping. 
• Exercise- Exercising regularly can improve sleep, although I try to avoid exercising too close to bedtime. Exercising right before bed causes stimulation, which can keep me up. 
• Relax-  Some activities that help me relax are to stretch, listen to soft music, use a heating pad and/or take a hot shower.
• Wind-down- Avoid anything that requires too much stimulation before bed. (working on this)

-Some foods have natural substances in them, which can promote a good nights sleep.
Here is a link, where you can learn more about 10 foods that help with sleep... http://www.healingfoodandherbs.com/10-foods-for-sleep/

-If you have trouble sleeping sometimes, as I do, try these techniques.. they may help! =)
What are some things you do to help you sleep?

15 Simple things that make me happy =)

1. Listening to music
2. The sound of singing birds
3. Hot drinks on a cold day
4. The sound of rain
5. Candles
6. Fall
7. Winter
8. Christmas
9. Giving
10. Helping others
11. Eating good tasting foods
12. The feeling I get after I exercise
13. Watching movies
14. Snuggling in a blanket
15. Waking up and going back to sleep ; )

 

What are some simple things in life that make you happy?

 

 

My Blood Test Results

About a week ago, I went to my follow up appointment with the rheumatologist. As I sat there, nervously twiddling my thumbs, the Dr. walked in. He had, with him, my blood test results from the previous visit. He sat down and told me, "your iron levels are very low along with your vitamin D levels." He then added, "you also tested positive for mild lupus. I worry that if you ever decide to have children it could develop into full blown Lupus." I listened closely as he continued, "at this point we need to treat you for your deficiencies and if in a month that hasn't helped we will have to start treating the lupus."

He prescribed me iron, vitamin D, and suggested I start taking a multi-vitamin. He said he usually prescribes his patients 1,000 unit of vitamin D, but since my levels are so low he needed to prescribe 1.5 mg (50,000 unit) taken once a week. I told him, "I guess I need to get more sun." He replied, "well that's the issue... people with Lupus have sun sensitivities, so it is a good idea for you to try and avoid the sun." This led me to believe... I'm a mess! haha This is more challenging then I thought! I thought I was doing everything right, but my blood test results showed otherwise. I guess people with lupus or any autoimmune disease can have trouble absorbing nutrients and can easily become deficient. Therefore, supplements are usually needed in addition to what a person is already consuming on a daily basis.

At this point, I am following the Drs. directions along with continuing my healthy lifestyle... I am trying to stay positive and hoping for the best!