I haven't felt up to writing. Fibro has played it's mean game of up and down with me. I will be more detailed next time. Right now I just wanted to update that I have an eye infection and also threw up about 8 times last night. I blame this compromised immune system and the HHV-6 and just the fibro hell.
Sometimes it really feels hellish.
I am going to the ER shortly to get antibiotics for my eye.
Been reflecting a ton about beauty and self esteem and where I find my security. I've been dealing a lot with these issues being sick every single day of my life. I am excited to share what Abba is teaching me. :) Until next time!
P.S. On the plus side at least this time I am going to the ER for something unrelated to fibro! That deserves a happy dance.
Tuesday, May 10, 2011
One thing that I forgot to add to my last post is that sugar is absolutely, positively horrible for fibromyalgia. I have cheated on my diet a few times and let me tell you there is a price tag with whatever the indulgence is. The doctor was strict, strict, strict about this. I am finding it somewhat difficult as far as variety while eating gluten free.
The more I learn about what I am actually going through, and all of the separate compromises in my body because of a continual, long term viral illness and the defunct nervous and immune system- the more I realize that people DO need to be informed about this disease. It is very life-changing and persistent. One step forward, 7 huge steps back, 3 steps forward, 2 back, you get the idea.... There is no "vacation" from being sick. I see people post on facebook or have some in my life who are woeful over a few day with a cold cold or flu. The fleshy part of me wants to scream at the sheer ignorance of what being sick actually means and the other part smiles sweetly and tries to help make them feel better. It's a battle to deal with disease, especially when it's invisible. People see us fibro fighters laughing or having a swell day and suddenly we are misjudged or mistreated, or worse yet we aren't believed in the first place.
I am thankful for a Jesus who is with me through every pain. Honestly without the consistency of His presence and His love for me I might have given up months and months ago. I may have given in to disease and the lies the enemy is setting out on my path.
I encourage anyone who has fibromyalgia to please try to go to a clinic specializing in fibro or at least find a doctor who will test you in depth. This is not just one disease, we carriers usually have several illnesses/infections at once. Without getting to the root cause we are simply masking all of the other issues and leaving our immune systems out to fail and keeping us sick. It is costly but I have no income and God is providing the way to get treatment. It's worth it. If you had Cancer wouldn't you do anything to get better? Our bodies are not okay, we are sick. We have a compromised immune system and our nervous system is haywire. Aren't we worth the price it pays to be taken seriously and treated well?
The more I learn about what I am actually going through, and all of the separate compromises in my body because of a continual, long term viral illness and the defunct nervous and immune system- the more I realize that people DO need to be informed about this disease. It is very life-changing and persistent. One step forward, 7 huge steps back, 3 steps forward, 2 back, you get the idea.... There is no "vacation" from being sick. I see people post on facebook or have some in my life who are woeful over a few day with a cold cold or flu. The fleshy part of me wants to scream at the sheer ignorance of what being sick actually means and the other part smiles sweetly and tries to help make them feel better. It's a battle to deal with disease, especially when it's invisible. People see us fibro fighters laughing or having a swell day and suddenly we are misjudged or mistreated, or worse yet we aren't believed in the first place.
I am thankful for a Jesus who is with me through every pain. Honestly without the consistency of His presence and His love for me I might have given up months and months ago. I may have given in to disease and the lies the enemy is setting out on my path.
I encourage anyone who has fibromyalgia to please try to go to a clinic specializing in fibro or at least find a doctor who will test you in depth. This is not just one disease, we carriers usually have several illnesses/infections at once. Without getting to the root cause we are simply masking all of the other issues and leaving our immune systems out to fail and keeping us sick. It is costly but I have no income and God is providing the way to get treatment. It's worth it. If you had Cancer wouldn't you do anything to get better? Our bodies are not okay, we are sick. We have a compromised immune system and our nervous system is haywire. Aren't we worth the price it pays to be taken seriously and treated well?
Hell Week
Afer the busy weekend that was and the few days following it I felt like a major basket case. I was demanding, shrill, very oversensitive to every single sound, and it seemed that I was in panic mode all of the time. I was crying and feeling miserable. It was a flare of all flares. By my third fibro appointment last Thursday I was in pure misery. Everything ached and cried out for attention in my body and I did not know what to do about it. I felt out of my mind, as if there had been no recovery in the slightest, as if the medication and all these weeks of trying to rebuild my life had been a waste of time. I went in to my appointment and was told my blood pressure was 150/100. I haven't struggled with high blood pressure since I'd started treatment, but I was in a lot of pain and anxiety was buzzing- literally- all of the time. Since that Saturday before I had been in a state of panic and pain. Blind, all consuming. The doctor explained that what had happened is fairly common. He has seen it in numerous patients seeking recovery. As my immune system starts to repair (slowly) ALL energy I am gaining (remember I am working with no energy to begin with) is going to that repair. When stressful events occur-whether it is emotional (like fighting with loved ones, or the custody battle or the myriad of issues people around me are having and inviting me into) or physical (being out all day, doing extra housework, allowing myself to push past my "normal" limits)the toxins that are being released go straight into my brain causing the nervous system to go completely bonkers. The doctor said the natural inclination when we start to regain some energy is to act normal, but I cannot do that. I do not have the luxury. He reminded me that this is a chronic illness that is very hard to beat and it will take a long time. He assured me I am doing good with the medications and diet and that it is completely natural to be feeling like I was dying or that I might be crazy or whatever. He reassured me that this is not all in my head and that I have to be kind to myself.
Cut to the car ride home. I am not okay. I am not myself.Equipped with the knowledge that it's not me, but the toxins in my brain making me feel so anxious and hopeless, I try to explain to the person with me. We get into a huge, dramatic argument because I feel like I am sinking and sinking and so overwhelmed, and they have no idea about anything the doctor has just told me. I'm crying and wailing and basically having the tantrum of the century. As most cases go this person says some very damaging things that seep right into my spirit and add to the illusion I've created that I am a loony bin. Why oh why we stopped at the supermarket is beyond me. I needed some fruits and water, so there we were in the midst of my emotional breakdown, when some pretty young blonde thing with dangly earrings walks by and mutters a soft "excuse me." Before I know it a curse word is uttered under my breath. I am so overloaded in this bright, loud, completely harmful (to me anyway)grocery store. I place the basket down with a loud flourish, announce I am going to go kill myself (now I would never say that and have never ever wanted to kill myself but I was not myself). We get in the car and 10 minutes later I am telling the person next to me that I want to just not exist anymore, the pain is too much, I can't live like this. Blah, blah, blah. Finally I explain that it's the toxins making me nuts and we go inside. I flop on the bed and just cry. I can't talk myself out of it, I can't do anything but morosely cry.
I got into prayer and asked God to please take this from me. All of it, but in particular the emotional turmoil. I asked for forgiveness for my attitude towards others at the time, and to the poor girl @ the store we did nothing wrong. I asked the person who was with me if they could go back and apologize to her, explain that my comment was not directed to her at all. I was still not feeling okay. Words will not paint an accurate picture of my hell last week. The frenzy, the feeling of doom, the hysteria bubbling at every single sound and problematic situation around me.
The doctor has put me on a detox for the next few weeks. This week we start with Questran, which is powder mixed with water to be taken daily after lunch and afternoon medication, followed a half an hour later with teaspoon of fat (one egg, a pat of butter, or olive oil). I am on day 3 of this and the goal is to remove the toxins that went haywire and the continuation of repairing my immune system. This is a 5-7 day detox. Then I will continue detoxing with charcoal capsules and bentonite.
He also added another supplement called milk thistle for my gallbladder. So far the questran has given me cramps and some blood but it seems to be working.
I also was told to take a test online called surviving mold to check something in my eyes. Apparently exposure to mold could have resulted in my perception being off. I took the visual test yesterday and failed in both eyes I'm not sure what that means exactly and what we're going to do about it but I will update when I go back on June 6th.
I continue to up my Vitamin D by 1000 every week until I get to 10,000 (which wil be on June 1st) and am now upping the Nystatin until I am at 6 a day.
The most important thing I learned while going through last week is that I need to be nice to myself. Usually when I feel a flare coming I just keep plugging away and end up in a worse state then before. The other night I felt my body start to ache and I opted to lay down in silence vs, continue to try to be active. I have the bursts of energy from the thyroid medication and have been doing more housework, the never ending loads of laundry, etc. but I believe I am finally coming into acceptance. It is slow and sometimes I flutter back to grief or anger or any of the other stages, but the slow onset of accepting who I am now is happening. I can feel it inside. I can see feel it when I start to discuss my sickness rather then try to apologize it away. Yesterday for example I went to the store and the checkout woman and I got into a conversation after I remarked how I wish I could eat chips (there were 2 bags up at the register). After she asked if I am on a diet I explained that I have fibromyalgia and that my doctor has me on a very strict diet. She began to ask me questions about it, said her friend also has it, and isn't it so hard to diagnose? I told her that it took a year and a half to diagnose me and gave her a business card for the clinic I go to in Sacramento. I also write the web address for the chronicles of fibro blog and my own blog. It was so refreshing! Being able to share with someone without getting all fumbly and feeling that robe of guilt at being sick... like I was somehow imposing on the whole entire world. Literally and seriously.
I am realizing the need to spend less time with toxic people, and to seriously remove myself from ANY and ALL situations that are stressful and dramatic. My body simply cannot handle being overwhelmed with petty problems or with people who cannot and will not respect my sickness. I blamed myself for a very long time for my limitations. I was afraid and scared and felt guilty all of the time. Like I was a waste of space now that I am sick. That is just a horrible mentality to have. I am now discovering who I am NOW, and that I do not need rely on past accomplishments to sustain the image I had of myself. I let it go. I am embracing this new me, complete with restrictions. I still carry my earplugs everywhere I go. I have found sisterhood in the online community, I am listening to my body, and with the wisdom of women who have gone before me I am starting to put my health ahead of the line.
There will always be people in my life who have issues- some very real and tragic and horrible, some ridiculous and petty and make me want to tell them to bugger off, but it's not mine to fix or solve or handle. I can pray for them and leave it with Jesus. I can stop being the best friend. I can start to heal and only I can make that call. I get to choose. Obviously when the physical overrides and I am not able to be calm or rational and the toxins and the nervous system are wreaking havoc, I need help. The people who will love me in the ugliest of moments and guide me back to the road to healing, but for the most part it is entirely up to me. My diet, my decisions, my vitality.
I do not have this all figured out, but I delight in the fact that I am one step closer to this new me. I'm starting to like her. ;)
P.S. My amazing girls gave me a mother's day card and it made my day.
It's an amazing reminder of what the Lord has done and what He continues to do. I am so in love with Him!
Please continue to pray with me for donations! Thank you!
Cut to the car ride home. I am not okay. I am not myself.Equipped with the knowledge that it's not me, but the toxins in my brain making me feel so anxious and hopeless, I try to explain to the person with me. We get into a huge, dramatic argument because I feel like I am sinking and sinking and so overwhelmed, and they have no idea about anything the doctor has just told me. I'm crying and wailing and basically having the tantrum of the century. As most cases go this person says some very damaging things that seep right into my spirit and add to the illusion I've created that I am a loony bin. Why oh why we stopped at the supermarket is beyond me. I needed some fruits and water, so there we were in the midst of my emotional breakdown, when some pretty young blonde thing with dangly earrings walks by and mutters a soft "excuse me." Before I know it a curse word is uttered under my breath. I am so overloaded in this bright, loud, completely harmful (to me anyway)grocery store. I place the basket down with a loud flourish, announce I am going to go kill myself (now I would never say that and have never ever wanted to kill myself but I was not myself). We get in the car and 10 minutes later I am telling the person next to me that I want to just not exist anymore, the pain is too much, I can't live like this. Blah, blah, blah. Finally I explain that it's the toxins making me nuts and we go inside. I flop on the bed and just cry. I can't talk myself out of it, I can't do anything but morosely cry.
I got into prayer and asked God to please take this from me. All of it, but in particular the emotional turmoil. I asked for forgiveness for my attitude towards others at the time, and to the poor girl @ the store we did nothing wrong. I asked the person who was with me if they could go back and apologize to her, explain that my comment was not directed to her at all. I was still not feeling okay. Words will not paint an accurate picture of my hell last week. The frenzy, the feeling of doom, the hysteria bubbling at every single sound and problematic situation around me.
The doctor has put me on a detox for the next few weeks. This week we start with Questran, which is powder mixed with water to be taken daily after lunch and afternoon medication, followed a half an hour later with teaspoon of fat (one egg, a pat of butter, or olive oil). I am on day 3 of this and the goal is to remove the toxins that went haywire and the continuation of repairing my immune system. This is a 5-7 day detox. Then I will continue detoxing with charcoal capsules and bentonite.
He also added another supplement called milk thistle for my gallbladder. So far the questran has given me cramps and some blood but it seems to be working.
I also was told to take a test online called surviving mold to check something in my eyes. Apparently exposure to mold could have resulted in my perception being off. I took the visual test yesterday and failed in both eyes I'm not sure what that means exactly and what we're going to do about it but I will update when I go back on June 6th.
I continue to up my Vitamin D by 1000 every week until I get to 10,000 (which wil be on June 1st) and am now upping the Nystatin until I am at 6 a day.
The most important thing I learned while going through last week is that I need to be nice to myself. Usually when I feel a flare coming I just keep plugging away and end up in a worse state then before. The other night I felt my body start to ache and I opted to lay down in silence vs, continue to try to be active. I have the bursts of energy from the thyroid medication and have been doing more housework, the never ending loads of laundry, etc. but I believe I am finally coming into acceptance. It is slow and sometimes I flutter back to grief or anger or any of the other stages, but the slow onset of accepting who I am now is happening. I can feel it inside. I can see feel it when I start to discuss my sickness rather then try to apologize it away. Yesterday for example I went to the store and the checkout woman and I got into a conversation after I remarked how I wish I could eat chips (there were 2 bags up at the register). After she asked if I am on a diet I explained that I have fibromyalgia and that my doctor has me on a very strict diet. She began to ask me questions about it, said her friend also has it, and isn't it so hard to diagnose? I told her that it took a year and a half to diagnose me and gave her a business card for the clinic I go to in Sacramento. I also write the web address for the chronicles of fibro blog and my own blog. It was so refreshing! Being able to share with someone without getting all fumbly and feeling that robe of guilt at being sick... like I was somehow imposing on the whole entire world. Literally and seriously.
I am realizing the need to spend less time with toxic people, and to seriously remove myself from ANY and ALL situations that are stressful and dramatic. My body simply cannot handle being overwhelmed with petty problems or with people who cannot and will not respect my sickness. I blamed myself for a very long time for my limitations. I was afraid and scared and felt guilty all of the time. Like I was a waste of space now that I am sick. That is just a horrible mentality to have. I am now discovering who I am NOW, and that I do not need rely on past accomplishments to sustain the image I had of myself. I let it go. I am embracing this new me, complete with restrictions. I still carry my earplugs everywhere I go. I have found sisterhood in the online community, I am listening to my body, and with the wisdom of women who have gone before me I am starting to put my health ahead of the line.
There will always be people in my life who have issues- some very real and tragic and horrible, some ridiculous and petty and make me want to tell them to bugger off, but it's not mine to fix or solve or handle. I can pray for them and leave it with Jesus. I can stop being the best friend. I can start to heal and only I can make that call. I get to choose. Obviously when the physical overrides and I am not able to be calm or rational and the toxins and the nervous system are wreaking havoc, I need help. The people who will love me in the ugliest of moments and guide me back to the road to healing, but for the most part it is entirely up to me. My diet, my decisions, my vitality.
I do not have this all figured out, but I delight in the fact that I am one step closer to this new me. I'm starting to like her. ;)
P.S. My amazing girls gave me a mother's day card and it made my day.
It's an amazing reminder of what the Lord has done and what He continues to do. I am so in love with Him!
Please continue to pray with me for donations! Thank you!
Wednesday, May 4, 2011
Last Friday I woke up early and we drove to El Cerito for the root canal. It was a pleasant day. The sun was shining, the leaves swayed gently outside of the window, the violin shop across the street showed a man cleaning a violin, and the women handling my mouth were very gracious and kind. It hurt only when the injections went into my mouth to numb me up. The actual root canal was no bother at all. Now I await approval via CMSP for a crown (could take up to 6-8 weeks) and after some time if those back teeth still bother me I may need another root canal. Meanwhile I have reapplied for CMSP (free medical insurance)as mine is over at the end of May. So I am praying a speedy application process and approval so I will not have a lapse in medication or treatments while not having insurance.
The plan for the rest of the afternoon was rest. We stopped at the library and grabbed some movies and headed home. We settled in to rest- tired and so ready to just have down time. Just then I received a phone call and a family member needed some help. Her car broke down and she needed a ride to work about 45-60 minutes away, and then a ride home later that evening at 11pm.
We decided this was an unexpected opportunity for an adventure. I decided that at least. So off we went, and then we came home, took a nap, and then went back to pick her up. It was a pretty long day, but there was so much beauty along the highway. The flowers, trees, and everything kept making my heart so happy. That night I collapsed into slumber and the next morning woke up for another drive. My family member needed another ride to and from work.
It was a nice day again and we decided to stay on that side instead of attempting to drive all the way back home, drive to Vacaville for church, and then drive back to Larkspur late that evening. We didn't want to waste gas and we were also both very tired. We decided to take a detour to the beach after we dropped my family member off at work.
I love the beach so much and vow every year to go more then once, but things happen. Cars break, timing is off, etc. That Saturday we picked a spot near the restroom and hunkered down to enjoy the breeze and sea salt air. After about 2 hours of sitting on the sand I started to feel it....
FLARE.
I don't really go out much anymore. I go to appointments, take Mylie to school, the grocery store, church, the occasional movie, or to the library. This once social butterfly now stays home 80% of the time. So to be in a car for hours, to sit on a cold beach for even 2 hours, to be lacking sleep, not to mention the emotional turmoil impressed on my heart whilst people I love are going through hard times... varying from car trouble to almost losing their life to infertility to petty family drama (mine) to custody issues to brain cysts... it all adds up and then hits at once.
BAM.
The treatments at the fibro center have helped immensely. I feel fortunate and blessed to have found a doctor (2 actually) that teats my specific disease and who has helped unlock the mystery that was and give me names to go with my conditions. I am on supplements to rebuild my immune system, on prescription medications to help my heart and my thyroid, etc. I have gained more energy in the last few weeks, but I have also remembered over and over that I must take this easy. My recovery is not going to happen overnight and every single time I try to steamroll ahead and act in accordance with the day's energy I end up crashing and burning. Oh, I have definitely gotten better at pacing and at treating myself better. Putting myself ahead of the to-do's and expectations for once in my life, and still it is a slow climb up this mountain.
Let's go back to Saturday night. So we left the beach and still had 4 or 5 hours until we had to pick my family member. I was drained. Absolutely. We ended up going to a Borders that was closing for good- spent about 10 minutes in there before it got boring, and then we ended up at a whole foods type store where I found a dark chocolate bar with bacon inside (I cheated and had some sugar and it was divine!) and some delicious water with a strawberry hint. Not like flavored water, but as if the strawberries had been marinating in the water like lemons. Very cool. We got to my family member's work early and hung out in the patients' dining area. I love places like that at night- such as hospitals when no one is there or airports. It's one of my most favorite things. Well by 11pm I was so in a flare, my mood was edgy and I just wanted to be home in bed. I was not all that pleasant and got a little snappish.
When we dropped off my family member and got home we were suddenly in a fight. An all night affair that was a complete waste of time. Two exhausted people- one of them seriously sick- and a whole mess of words. The enemy was seriously trying to get me down! I mean all of these horrible things were spoken into my spirit and it's pretty hard to not feel the poison of those words. Apologies were issued, and there is a genuine contrite heart... the Lord knows I am imperfect for sure, but I really felt attacked and my self esteem (which is already fragile these days it seems) took quite the hit.
So all night was spent in a snit, and then Sunday came and went. No recovery for the fibromyalgia. Then came Monday and the routine. I was out all afternoon doing errands with another family member, taking Mylie to school and picking her up (having her home was the best part of all of this), and then we watched HOP at the movie theatre. I was so tired but it was the only day we could do it since she had to leave again so soon. After the movie we waited for our ride and ran a quick errand. Truthfully I just wanted to go home and have no idea how I made it through that day, but I needed to get my medication.
I was in the store (which is tiny)and there was LOUD music playing. Sounds, especially music on blast like that really makes my nerves fray instantly. I lose the ability to concentrate, to function almost. So the music was blaring, I had to choose my medication, other customers made idle chit chat with me, the sales guy kept a stream of chatter- which I'd been able to handle before until the very end when the music had got to me- and I was just not having any flirty banter at all on this occasion. I felt like I was trapped. The sensory overload was too much, too much. I started shaking. Hands gripping the counter, shaking as I fumbled to find my wallet, trying to concentrate and calculate money in my head, and still trying to act normal. I felt so embarrassed because the hysteria was rising and rising inside Even now as I write this I feel my chest tighten. I was so scared. I don't know what happened except I was terrified. Sheer terror. I felt like if I did not leave immediately that I would surely die. I leaned over and told the guy I had to get out of there now. He understood as he had shared on the last visit that he suffers from extreme anxiety. I was trembling as I walked out and felt like I was definitely dying. My chest was too tight, my limbs were not working, I felt doom closing in on me. I got into the car and started sobbing. Wailing. Covering my mouth with my hands so I wouldn't scream, but the screams were silent. I could not get out of the fear. My physical body felt like it was collapsing, and I tried to focus on what was actually happening. The arms encircled around me in a hug, the chatter in the backseat, the tree in front of the car. I could not talk or move except to cry. The panic attack lasted for hours. I forgot and was not coherent enough to pop the xanax in my mouth. I've never tried it but was given to use in extreme emergencies. Obviously I calmed down on the car ride home, but the chest pain and anxiety remained until I went to sleep.
Then yesterday came and when I woke up I was still feeling the heaviness. It really terrified me the night before. More then anything ever has. It was a long day yesterday. I just wanted and needed silence and sleep but there were things that needed to be done. I had to do blood work for the clinic, Mylie had school, and I was in someone else's vehicle so my requests to go home went unrespected. I was a prisoner. I put on the earplugs and tried to get through it.
By last night I was just done, and watching Mylie sob and beg to stay home just made me feel worse. I hate watching her suffer and I am so angry that the person who should want her best interests more then anyone just doesn't. I am so tired from the long weekend, the stupid fight that ripped apart my newly put back together self-esteem, the sitting at social services to re-apply for medical insurance again, the not being heard when I say I am sick and need to go home, the social anxiety I feel at the idea of being out or in someone else's car and not being able to escape, the fact that I was probably a total freak at that store with my panic attack... it all just rips open that fear I have at being so sick.
I have made so much progress in 2 short months, and yet I must remember it has only been 2 months. I am positive, I am pro-active about my health, and I am learning my balances as I endure this, but I am also weary right now.
I have gone through a lot and sometimes I don't treat myself too kindly. I need to recover. I need to relax. Instead I barreled straight into the energy I was gaining from my meds that I ended up falling flat on my face again.
I'm processing right now. My peace has been temporarily misplaced as I meander through this new path. I feel fragile but I know I am strong. I feel broken but I know my Jesus will take that and make something beautiful out of it. Through the last few days of stress and frustration I see His many blessings. Food to eat, financial provision, medication, friends, and always nature. Last night I started to feel some anxiety and got into prayer. When I opened my eyes I saw the roses picked from my Auntie's backyard and I knew it was God's reminder that He is in the details of my life, for He knows how much I adore flowers and this arrangement smells so delicious and is more glorious then any store bought bouquet I've ever seen.
I am sad about how Mylie is being torn apart by everything. She tells me all the time how she wants to stay home, how she wants to go to school here come August, and how she doesn't want to go back and forth anymore. I want to change it for her, make it all better, but I am limited in my ability. I must turn to God and give Him my fear that she will end up in the wrong hands. I am also grieving and I didn't want to face that grief before. I lost my best friend. Someone I thought of as my sister. She didn't die, but she betrayed me and has turned away from me. Maybe we were never really friends since she basically lied about me in a court room and tried to discredit me. I am hurt by that. I am hurt that she is always only looking out for herself. Who suffers? Mylie.
Today I surrender again to my Savior who loves me. I pray that all of the junk spoken into my life this weekend would be broken off and healed and that I can find my peace in Him once again.
I wait eagerly.
The plan for the rest of the afternoon was rest. We stopped at the library and grabbed some movies and headed home. We settled in to rest- tired and so ready to just have down time. Just then I received a phone call and a family member needed some help. Her car broke down and she needed a ride to work about 45-60 minutes away, and then a ride home later that evening at 11pm.
We decided this was an unexpected opportunity for an adventure. I decided that at least. So off we went, and then we came home, took a nap, and then went back to pick her up. It was a pretty long day, but there was so much beauty along the highway. The flowers, trees, and everything kept making my heart so happy. That night I collapsed into slumber and the next morning woke up for another drive. My family member needed another ride to and from work.
It was a nice day again and we decided to stay on that side instead of attempting to drive all the way back home, drive to Vacaville for church, and then drive back to Larkspur late that evening. We didn't want to waste gas and we were also both very tired. We decided to take a detour to the beach after we dropped my family member off at work.
I love the beach so much and vow every year to go more then once, but things happen. Cars break, timing is off, etc. That Saturday we picked a spot near the restroom and hunkered down to enjoy the breeze and sea salt air. After about 2 hours of sitting on the sand I started to feel it....
FLARE.
I don't really go out much anymore. I go to appointments, take Mylie to school, the grocery store, church, the occasional movie, or to the library. This once social butterfly now stays home 80% of the time. So to be in a car for hours, to sit on a cold beach for even 2 hours, to be lacking sleep, not to mention the emotional turmoil impressed on my heart whilst people I love are going through hard times... varying from car trouble to almost losing their life to infertility to petty family drama (mine) to custody issues to brain cysts... it all adds up and then hits at once.
BAM.
The treatments at the fibro center have helped immensely. I feel fortunate and blessed to have found a doctor (2 actually) that teats my specific disease and who has helped unlock the mystery that was and give me names to go with my conditions. I am on supplements to rebuild my immune system, on prescription medications to help my heart and my thyroid, etc. I have gained more energy in the last few weeks, but I have also remembered over and over that I must take this easy. My recovery is not going to happen overnight and every single time I try to steamroll ahead and act in accordance with the day's energy I end up crashing and burning. Oh, I have definitely gotten better at pacing and at treating myself better. Putting myself ahead of the to-do's and expectations for once in my life, and still it is a slow climb up this mountain.
Let's go back to Saturday night. So we left the beach and still had 4 or 5 hours until we had to pick my family member. I was drained. Absolutely. We ended up going to a Borders that was closing for good- spent about 10 minutes in there before it got boring, and then we ended up at a whole foods type store where I found a dark chocolate bar with bacon inside (I cheated and had some sugar and it was divine!) and some delicious water with a strawberry hint. Not like flavored water, but as if the strawberries had been marinating in the water like lemons. Very cool. We got to my family member's work early and hung out in the patients' dining area. I love places like that at night- such as hospitals when no one is there or airports. It's one of my most favorite things. Well by 11pm I was so in a flare, my mood was edgy and I just wanted to be home in bed. I was not all that pleasant and got a little snappish.
When we dropped off my family member and got home we were suddenly in a fight. An all night affair that was a complete waste of time. Two exhausted people- one of them seriously sick- and a whole mess of words. The enemy was seriously trying to get me down! I mean all of these horrible things were spoken into my spirit and it's pretty hard to not feel the poison of those words. Apologies were issued, and there is a genuine contrite heart... the Lord knows I am imperfect for sure, but I really felt attacked and my self esteem (which is already fragile these days it seems) took quite the hit.
So all night was spent in a snit, and then Sunday came and went. No recovery for the fibromyalgia. Then came Monday and the routine. I was out all afternoon doing errands with another family member, taking Mylie to school and picking her up (having her home was the best part of all of this), and then we watched HOP at the movie theatre. I was so tired but it was the only day we could do it since she had to leave again so soon. After the movie we waited for our ride and ran a quick errand. Truthfully I just wanted to go home and have no idea how I made it through that day, but I needed to get my medication.
I was in the store (which is tiny)and there was LOUD music playing. Sounds, especially music on blast like that really makes my nerves fray instantly. I lose the ability to concentrate, to function almost. So the music was blaring, I had to choose my medication, other customers made idle chit chat with me, the sales guy kept a stream of chatter- which I'd been able to handle before until the very end when the music had got to me- and I was just not having any flirty banter at all on this occasion. I felt like I was trapped. The sensory overload was too much, too much. I started shaking. Hands gripping the counter, shaking as I fumbled to find my wallet, trying to concentrate and calculate money in my head, and still trying to act normal. I felt so embarrassed because the hysteria was rising and rising inside Even now as I write this I feel my chest tighten. I was so scared. I don't know what happened except I was terrified. Sheer terror. I felt like if I did not leave immediately that I would surely die. I leaned over and told the guy I had to get out of there now. He understood as he had shared on the last visit that he suffers from extreme anxiety. I was trembling as I walked out and felt like I was definitely dying. My chest was too tight, my limbs were not working, I felt doom closing in on me. I got into the car and started sobbing. Wailing. Covering my mouth with my hands so I wouldn't scream, but the screams were silent. I could not get out of the fear. My physical body felt like it was collapsing, and I tried to focus on what was actually happening. The arms encircled around me in a hug, the chatter in the backseat, the tree in front of the car. I could not talk or move except to cry. The panic attack lasted for hours. I forgot and was not coherent enough to pop the xanax in my mouth. I've never tried it but was given to use in extreme emergencies. Obviously I calmed down on the car ride home, but the chest pain and anxiety remained until I went to sleep.
Then yesterday came and when I woke up I was still feeling the heaviness. It really terrified me the night before. More then anything ever has. It was a long day yesterday. I just wanted and needed silence and sleep but there were things that needed to be done. I had to do blood work for the clinic, Mylie had school, and I was in someone else's vehicle so my requests to go home went unrespected. I was a prisoner. I put on the earplugs and tried to get through it.
By last night I was just done, and watching Mylie sob and beg to stay home just made me feel worse. I hate watching her suffer and I am so angry that the person who should want her best interests more then anyone just doesn't. I am so tired from the long weekend, the stupid fight that ripped apart my newly put back together self-esteem, the sitting at social services to re-apply for medical insurance again, the not being heard when I say I am sick and need to go home, the social anxiety I feel at the idea of being out or in someone else's car and not being able to escape, the fact that I was probably a total freak at that store with my panic attack... it all just rips open that fear I have at being so sick.
I have made so much progress in 2 short months, and yet I must remember it has only been 2 months. I am positive, I am pro-active about my health, and I am learning my balances as I endure this, but I am also weary right now.
I have gone through a lot and sometimes I don't treat myself too kindly. I need to recover. I need to relax. Instead I barreled straight into the energy I was gaining from my meds that I ended up falling flat on my face again.
I'm processing right now. My peace has been temporarily misplaced as I meander through this new path. I feel fragile but I know I am strong. I feel broken but I know my Jesus will take that and make something beautiful out of it. Through the last few days of stress and frustration I see His many blessings. Food to eat, financial provision, medication, friends, and always nature. Last night I started to feel some anxiety and got into prayer. When I opened my eyes I saw the roses picked from my Auntie's backyard and I knew it was God's reminder that He is in the details of my life, for He knows how much I adore flowers and this arrangement smells so delicious and is more glorious then any store bought bouquet I've ever seen.
I am sad about how Mylie is being torn apart by everything. She tells me all the time how she wants to stay home, how she wants to go to school here come August, and how she doesn't want to go back and forth anymore. I want to change it for her, make it all better, but I am limited in my ability. I must turn to God and give Him my fear that she will end up in the wrong hands. I am also grieving and I didn't want to face that grief before. I lost my best friend. Someone I thought of as my sister. She didn't die, but she betrayed me and has turned away from me. Maybe we were never really friends since she basically lied about me in a court room and tried to discredit me. I am hurt by that. I am hurt that she is always only looking out for herself. Who suffers? Mylie.
Today I surrender again to my Savior who loves me. I pray that all of the junk spoken into my life this weekend would be broken off and healed and that I can find my peace in Him once again.
I wait eagerly.
Thursday, April 28, 2011
He will have no fear of bad news: his heart is steadfast, trusting in the Lord. His heart is secure, he will have no fear: in the end he will look in triumph on his foes.
Psalm 112:7
I am 30 years old. I have been through a lot of unpleasant things in my short time here, including sickness and hardship. I have experienced actual poverty. I have seen the bad and I have cried out to Papa in sobs and groans only discerned by His Spirit. I have struggled against the burdens I see, the ones I carry, and the ones that have felt too big to hold. When I was 17 I lost a child. That did quite a number on my soul. The heart of a child cannot bear with the grief of losing a child. I lost myself the day I lost my child and I stumbled in some murky waters for years. Much like the Israelites taking 40 years to get out of the desert, I have made my way around some familiar mountains again and again. I made unhealthy decisions regarding relationships- dating someone who verbally thrashed me and shook out every ounce of respect I had for myself. I had a season of rebellion where I thought I was oh so happy, but all the while it was a lie. I followed a path rich with shortcuts. I worked hard at jobs I didn't love. Making good money but not feeling content. I settled in dating relationships because I didn't know how worthy I was. I stumbled.
And then one day I began to ache for something. There was a hole inside. And then I met Jesus. Beautiful, fierce, determined in His pursuit of me. I met Him one night sitting on my bedroom floor, felt His rush of love, heard the roar of His presence come and settle over me. I don't remember the day or the time except that I was 21 years old. I remember it felt like falling in love. Like the way your heart beats fast when the boy you like passes you in the hall at school. I felt alive. I was eager to soak in that radiant love.
But I still tried to have it my own way. I didn't fully understand grace. I didn't know it was free. I didn't know I could know Jesus and still carry my own burdens. So I just kept carrying them and not understanding I could LAY THEM DOWN.
One evening ears ago I got into a conversation with a man of God who I fully respect. He explained to me about the grace. He looked me in my eyes and he apologized on behalf of every man that had ever hurt me. He cried and I could see the depth of his brotherly love. It touched my core. That conversation changed my life. It set me on the course to run hard after a Savior who chose me and loves me with all of my flaws and all.
Healing didn't happen overnight. I asked for it and over a period of months the Lord started to shift things in my little life. He gave me peace where there had been turmoil, He gave me strength where there had been weariness, and He restored to my life JOY.
How did I live without joy for so long?
On a flight home from North Carolina years ago the Lord poured over me "healing rain." I was sitting there, and months had gone by. Numerous things had come out of my spirit and come anew in Christ, and on this very day something glorious poured out in the atmosphere and came over me in such a way that I knew I was free. Fully free.
It was no coincidence then that after driving home from the airport that same day I saw the man who had tormented me verbally for years. I caught sight of him as I was at a stoplight. I felt my heart race. I knew it was time to face my tormentor. I drove to where he was working at a car wash. He saw me, we made small polite conversation and he gave me the car wash for free. I drove away liberated. Free from the chains that had held me since I was 17 years old, free in a way I had never experienced.
The bondage was broken.
And ever since then there have been numerous trials. Some big, some small. Each time I have a choice. Am I going to give in to my feelings or am I going to give in to Jesus?
There is so much heartbreak all over the world. I have seen only a tiny percent of it. I hear of people I love going through divorce, illness, infertility, tragedy, mental illness, abuse.... the list goes on and on. It is scary and overwhelming and so heartbreaking. Sometimes all I can feel is that hurt. The people all around me and me myself being bounced around in an ocean too vast to stay afloat.
And I have to make that decision. Every single time.
When I got sick, as I continue to be sick, as I watch people's lives torn apart by a wild enemy on the prowl.
I am 30 years old. I have to make a decision every single day. I may not always like the answer I get when I pray, but my prayers ARE answered. There is a God bigger then me that has ALL of this in His hands. It's not just a pretty story told to comfort someone on their deathbed, and heaven is not just a delightful story for children.
My God is a righteous God. He is fair and just. His ways are never crooked. He knows every step I take. He defends those that are His. He see's the oppressed, the stressed, the down and out.He also see's the smiles and the laughter and the joy.
So I say that whether I am playing in an ocean or drowning in it I shall choose always my Jesus.
He is my healer, my redeemer, my everything.
As tragedy befalls, as hearts break, as life disappoints I look UP.
Psalm 30:1-3
I will exalt you, LORD,
for you lifted me out of the depths
and did not let my enemies gloat over me.
LORD my God, I called to you for help,
and you healed me.
You, LORD, brought me up from the realm of the dead;
you spared me from going down to the pit.
There is a purpose, there is victory. Though it seems the enemy has the upper hand I know that God is still in control. He is still pushing us to victory and He is still faithful even in my doubts.
Oh precious Papa
reveal your heart to me.
Show me how to love like you do all the more
even as my own weary spirit desires to fall beneath the weight.
These burdens are not my own to carry. I shall bring them to you and leave them there for I can trust you more then my own self.
Let this heart that breaks be full of your wisdom and joy.
Bring forth the strength you have deposited within me and let me rely wholly upon thee for my every fear.
You alone are good, and you alone are worthy. I sit before you, once again humbled by your provision. Though I am poor you provide my basic needs every single day. My head always has a place to lay at night, my belly always full from the rations. I have clothes on my back and shoes on my feet and I have the love of a child. What more do I need?
Let me ever, always look to you.
Psalm 112:7
I am 30 years old. I have been through a lot of unpleasant things in my short time here, including sickness and hardship. I have experienced actual poverty. I have seen the bad and I have cried out to Papa in sobs and groans only discerned by His Spirit. I have struggled against the burdens I see, the ones I carry, and the ones that have felt too big to hold. When I was 17 I lost a child. That did quite a number on my soul. The heart of a child cannot bear with the grief of losing a child. I lost myself the day I lost my child and I stumbled in some murky waters for years. Much like the Israelites taking 40 years to get out of the desert, I have made my way around some familiar mountains again and again. I made unhealthy decisions regarding relationships- dating someone who verbally thrashed me and shook out every ounce of respect I had for myself. I had a season of rebellion where I thought I was oh so happy, but all the while it was a lie. I followed a path rich with shortcuts. I worked hard at jobs I didn't love. Making good money but not feeling content. I settled in dating relationships because I didn't know how worthy I was. I stumbled.
And then one day I began to ache for something. There was a hole inside. And then I met Jesus. Beautiful, fierce, determined in His pursuit of me. I met Him one night sitting on my bedroom floor, felt His rush of love, heard the roar of His presence come and settle over me. I don't remember the day or the time except that I was 21 years old. I remember it felt like falling in love. Like the way your heart beats fast when the boy you like passes you in the hall at school. I felt alive. I was eager to soak in that radiant love.
But I still tried to have it my own way. I didn't fully understand grace. I didn't know it was free. I didn't know I could know Jesus and still carry my own burdens. So I just kept carrying them and not understanding I could LAY THEM DOWN.
One evening ears ago I got into a conversation with a man of God who I fully respect. He explained to me about the grace. He looked me in my eyes and he apologized on behalf of every man that had ever hurt me. He cried and I could see the depth of his brotherly love. It touched my core. That conversation changed my life. It set me on the course to run hard after a Savior who chose me and loves me with all of my flaws and all.
Healing didn't happen overnight. I asked for it and over a period of months the Lord started to shift things in my little life. He gave me peace where there had been turmoil, He gave me strength where there had been weariness, and He restored to my life JOY.
How did I live without joy for so long?
On a flight home from North Carolina years ago the Lord poured over me "healing rain." I was sitting there, and months had gone by. Numerous things had come out of my spirit and come anew in Christ, and on this very day something glorious poured out in the atmosphere and came over me in such a way that I knew I was free. Fully free.
It was no coincidence then that after driving home from the airport that same day I saw the man who had tormented me verbally for years. I caught sight of him as I was at a stoplight. I felt my heart race. I knew it was time to face my tormentor. I drove to where he was working at a car wash. He saw me, we made small polite conversation and he gave me the car wash for free. I drove away liberated. Free from the chains that had held me since I was 17 years old, free in a way I had never experienced.
The bondage was broken.
And ever since then there have been numerous trials. Some big, some small. Each time I have a choice. Am I going to give in to my feelings or am I going to give in to Jesus?
There is so much heartbreak all over the world. I have seen only a tiny percent of it. I hear of people I love going through divorce, illness, infertility, tragedy, mental illness, abuse.... the list goes on and on. It is scary and overwhelming and so heartbreaking. Sometimes all I can feel is that hurt. The people all around me and me myself being bounced around in an ocean too vast to stay afloat.
And I have to make that decision. Every single time.
When I got sick, as I continue to be sick, as I watch people's lives torn apart by a wild enemy on the prowl.
I am 30 years old. I have to make a decision every single day. I may not always like the answer I get when I pray, but my prayers ARE answered. There is a God bigger then me that has ALL of this in His hands. It's not just a pretty story told to comfort someone on their deathbed, and heaven is not just a delightful story for children.
My God is a righteous God. He is fair and just. His ways are never crooked. He knows every step I take. He defends those that are His. He see's the oppressed, the stressed, the down and out.He also see's the smiles and the laughter and the joy.
So I say that whether I am playing in an ocean or drowning in it I shall choose always my Jesus.
He is my healer, my redeemer, my everything.
As tragedy befalls, as hearts break, as life disappoints I look UP.
Psalm 30:1-3
I will exalt you, LORD,
for you lifted me out of the depths
and did not let my enemies gloat over me.
LORD my God, I called to you for help,
and you healed me.
You, LORD, brought me up from the realm of the dead;
you spared me from going down to the pit.
There is a purpose, there is victory. Though it seems the enemy has the upper hand I know that God is still in control. He is still pushing us to victory and He is still faithful even in my doubts.
Oh precious Papa
reveal your heart to me.
Show me how to love like you do all the more
even as my own weary spirit desires to fall beneath the weight.
These burdens are not my own to carry. I shall bring them to you and leave them there for I can trust you more then my own self.
Let this heart that breaks be full of your wisdom and joy.
Bring forth the strength you have deposited within me and let me rely wholly upon thee for my every fear.
You alone are good, and you alone are worthy. I sit before you, once again humbled by your provision. Though I am poor you provide my basic needs every single day. My head always has a place to lay at night, my belly always full from the rations. I have clothes on my back and shoes on my feet and I have the love of a child. What more do I need?
Let me ever, always look to you.
Saturday, April 23, 2011
I just did 30 minutes on the exercise bike, sat in the hot tub for a spell, and then came home, showered, and did my stretching exercises. I feel good! The story might be different later, as I can already feel my heart beating way fast (thanks thyroid med) but I did it! :)
Reading a wonderful book called Held written by 9-11 survivor Leslie Haskin. I am in so much agreement with what she is talking about. How tragedy and hardship changes our priorities. "Amen, Amen" I kept saying to myself as tears sprang forth.
There is a lot of stuff that affects my heart so differently nowadays. I see the world through a different lens. I've never been so enthralled by creation as I have this last year. It's amazing to me how much is going on everywhere, all of the time.
Life is so fragile. Not just in the life and death sense, but in the way that it is magical and breathtaking and so much fun! Even though the hard days come and I sob and weep and cry out to Jesus, I am led again to His refreshing stream of joy and light.
I know I am called to write. I know I am called to children. I know I am a believer in the impossible. "Can't" is not in my vocabulary.
I can.
I will.
"Stay in that secret place, till the surrounding noises begin to fade out of your heart, till a sense of God's presence has enveloped you. Listen for His inward voice till you learn to recognize it."- A.W. Tozer
Reading a wonderful book called Held written by 9-11 survivor Leslie Haskin. I am in so much agreement with what she is talking about. How tragedy and hardship changes our priorities. "Amen, Amen" I kept saying to myself as tears sprang forth.
There is a lot of stuff that affects my heart so differently nowadays. I see the world through a different lens. I've never been so enthralled by creation as I have this last year. It's amazing to me how much is going on everywhere, all of the time.
Life is so fragile. Not just in the life and death sense, but in the way that it is magical and breathtaking and so much fun! Even though the hard days come and I sob and weep and cry out to Jesus, I am led again to His refreshing stream of joy and light.
I know I am called to write. I know I am called to children. I know I am a believer in the impossible. "Can't" is not in my vocabulary.
I can.
I will.
"Stay in that secret place, till the surrounding noises begin to fade out of your heart, till a sense of God's presence has enveloped you. Listen for His inward voice till you learn to recognize it."- A.W. Tozer
I have been in a flare for the last several days and have chosen to spend the last 3 days resting. My viewpoint of rest is not where I'd like it to be just yet, for I still do loads of laundry, dishes, vacuum, etc. I am getting better! This morning I read scripture and spent time with Jesus. Yesterday I relaxed between chores, and the day before I spent 6 hours writing. Baby steps.
I am debating whether or not I can hack the exercise bike as it has been 10 days since I have done it. That was the last time I went to physical therapy. 2 days ago I did walk to the mailbox which is very far from the apartment, so that counts. I am considering starting at 5 minutes again and working slowly back up to 20.
I have upped my thyroid medication (Liothyronine) from 1 to 3 pills and go up to 4 pills per day on Tuesday. I have also increased the Vitamin D 1000 up by 1000 every week. Right now I am on 4000, and on Wednesday I will increase to 5000. The ultimate goal for now is to get to 10,000 per day. The reason is that to kill off the candida and bacteria it needs to progress slowly. If I take too much too fast then it results in me feeling worse.
I have had no need to even try the xanax. I have had moments of anxiety but nothing that I could not handle.
I have not been so good on my diet. For one I lack the funds to buy the proper organic, gluten free stuff. When I have my food stamps I am good as gold, but it only comes once a month and $200 does not get me very far. I have also been wanting sugar something fierce. BIG mistake. The moment I let that first taste hit my tongue, the craving only increased. It was explained to me that is because eating sugar is basically feeding the candida. You give the candida just a smidge and it goes haywire and starts to demand that you eat more and more sugar. I am making the decision to stop once and for all right now. You, my friends, are the ones to hold me accountable! ;)
My next fibro appointment is on May 6th. I've been doing better energy wise with the medication, but I still have the all over malaise. The pain is the same. It comes and goes whenever and wherever it feels like it.
The decision to cancel my physical therapy sessions has brought some peace. No stress over gas money, no stress about pushing too hard. I will miss it. I liked the environment, the interaction with strangers, and the feeling of accomplishment but I don't need a building or a team of people to tell me to ride an exercise bike. I can do it on my own and I shall.
No more donations have come in. I find that to be discouraging but it is what it is. God will supply my needs.
I am off to check the mail and hopefully get on that bike!
Cheerio!
I am debating whether or not I can hack the exercise bike as it has been 10 days since I have done it. That was the last time I went to physical therapy. 2 days ago I did walk to the mailbox which is very far from the apartment, so that counts. I am considering starting at 5 minutes again and working slowly back up to 20.
I have upped my thyroid medication (Liothyronine) from 1 to 3 pills and go up to 4 pills per day on Tuesday. I have also increased the Vitamin D 1000 up by 1000 every week. Right now I am on 4000, and on Wednesday I will increase to 5000. The ultimate goal for now is to get to 10,000 per day. The reason is that to kill off the candida and bacteria it needs to progress slowly. If I take too much too fast then it results in me feeling worse.
I have had no need to even try the xanax. I have had moments of anxiety but nothing that I could not handle.
I have not been so good on my diet. For one I lack the funds to buy the proper organic, gluten free stuff. When I have my food stamps I am good as gold, but it only comes once a month and $200 does not get me very far. I have also been wanting sugar something fierce. BIG mistake. The moment I let that first taste hit my tongue, the craving only increased. It was explained to me that is because eating sugar is basically feeding the candida. You give the candida just a smidge and it goes haywire and starts to demand that you eat more and more sugar. I am making the decision to stop once and for all right now. You, my friends, are the ones to hold me accountable! ;)
My next fibro appointment is on May 6th. I've been doing better energy wise with the medication, but I still have the all over malaise. The pain is the same. It comes and goes whenever and wherever it feels like it.
The decision to cancel my physical therapy sessions has brought some peace. No stress over gas money, no stress about pushing too hard. I will miss it. I liked the environment, the interaction with strangers, and the feeling of accomplishment but I don't need a building or a team of people to tell me to ride an exercise bike. I can do it on my own and I shall.
No more donations have come in. I find that to be discouraging but it is what it is. God will supply my needs.
I am off to check the mail and hopefully get on that bike!
Cheerio!
Thursday, April 21, 2011
I haven't felt much like writing lately. It's been an up and down few weeks.
It started last month with the physical therapy appointments. 3 a week for about a month. I started off with a bang. And it helps. It truly does, but what I also had to face yesterday is that it also hinders.
It finally hit me yesterday during my quiet/prayer time that I am not supposed to push myself and that is what I do. I suck it up. I just do it. That mode of operation no longer works for me.
That is the constant battle. Who am I now vs. who I used to be?
I don't think I have the answer to that yet.... at all.
At physical therapy I was up to 20 minutes on the bike, 3 weight machines, an exercise ball, stretches, and the electrical stimulation at the end. I was feeling good. Like I was finally, finally, finally doing something but then I would crash and I ended up missing at least 4 sessions. It was such a debate in my mind. That old nagging feeling that if I quit I was giving up on myself. Then in a spectacular moment yesterday I realized that maybe for the first time I would actually be doing better for myself by actually putting myself first with no regard to the what if's...
So I made the decision to stop physical therapy and to cancel the follow-up with the ortho doctor. I will continue my stretches, pool exercises, and do the bike 3x a week here at the complex gym and I am satisfied with that. It takes far more energy that I don't have in the first place to get ready, be driven 30 minutes to another town to get therapy and then come home. Before all of these appointments I went out one day a week. One. Sure I made the pit stops at Safeway or the library but never for long periods of time. Suddenly I was out about 5 days a week. I've had no less then 3 appointments, sometimes 4 on any given week in the last month and I just won't do that anymore. I was 3 sessions shy of finishing and then next week I was to go back to the ortho who would assess whether or not I need more or whatever.
I feel peace at making the decision to cut back. I really wrestled, but in the end it is about stress management and what I can and cannot handle. It's difficult to admit that I couldn't handle it, but that's what the reality is.
I don't get the luxury of trying to "cut down" on stress like it's some polite thing or a mere suggestion. I literally cannot handle stress. I have a heart problem, a viral infection that will never go away that is slowly invading every cell, every part of me... I have fibromyalgia and the list of ailments that accompany that. It's too much to try to swing everything at once. That choice belongs to someone else. So I am scaling back. It took forever and a day to stop feeling guilty when I didn't go to parties or birthdays or weddings or baptisms, but I'm finally at this place where I am accepting that the people who don't respect that... who "overlook" (and that is being kind) MY serious medical illnesses because it's not convenient for them... they don't get to be a part of my life anymore. That's it. Point blank.
As a woman who loves Jesus and believes wholly in the Bible I have always struggled with what it means to serve without being walked all over. People say "God didn't call us to be doormats." I used to tell people that all the time, but I see nowhere in scripture where that is true. So I always just let everyone else get what they want out of life and I would sit back. The supporter. The cheerleader (not literally). The best friend.
And now here I am. I am redefining EVERY relationship I have. Every routine I have. Every habit that I want to be broken. I am being called sweetly to the heart of Jesus again. The getting back to the basics of what it means to love Him and worship Him. I have a lot of questions and anger at hypocrisy I see in certain churches. I am questioning the cliques I see, I am questioning the Christian trends, I am not a fan of western churches. I really am not. I think of the Philippines everyday. I think of the humility, the simplicity of being in love with Jesus and trusting Him for miracles. I realized whilst journaling yesterday that I have been "sick" way before it got this bad. Way before the physical came and stole everything. I literally got sick in the Philippines and I never recovered. But the sick I am speaking of is that the very night I got back from the Philippines I walked into my home church and just felt despair.
I was wrecked for another country. The next night at our annual youth conference I could only cry during worship. It was so loud, so big, so.... something I could not define. I was heartbroken. I didn't want to be there. I didn't want to sit in the air conditioned building singing those songs and acting like being in love with Jesus is some cool kids club.
It's just so not.
So I started to become heartsick. When people would ask me about the missions trip I couldn't explain, couldn't describe my heart and the brokenness and yet complete wholeness. I couldn't even understand why I resented being home. A small group of us started working on plans for a non profit organization to support the Philippines and we were planning our next trip. We got a name, a website, and things were rolling. For now that is still something being prayed over and I believe it will come into fruition at the timing of God. My heartsickness continued and I stopped hanging out with people. I stopped putting so much into the things that don't matter here in spoiled America. And I kept getting sicker physically.
I'm examining everything. I'm coming back to the heart of worship. I'm being called to sit and relish in Jesus and not get so caught up in the trends of American churches. Even speakers that I adore, books I read- God is telling me to read His book alone for TRUE guidance. These other people are amazing, but that's just it... they are people. They aren't God.
And my boundaries continue to be erected one small bit at a time.
I am starting to love more and more the idea of living off the grid and have debated deleting my facebook and everything. I won't because my family and besties that live far away are on there and it enables us to stay in touch, and my fabulous fibro family is there of course, but I find facebook to be quite narcissistic. I hate having a cell phone.
I'm all over the board but that's how I feel lately. Everything is coming out and being redefined under the Lord and His plans for my life. I have debated going back to school online since I am not much for being out of the house anymore. Then I started thinking I will wait on that as right now I am concentrating on the grieving of my old self and acceptance of the me NOW. It's the hugest battle I have ever had! Seriously it is bringing up things from childhood, my past in my early twenties, and all the crap now. I have been healed and set free from so much over the years but I am finding that there is still so much in there that I have held onto! Things that I was not even aware of, and things that need to be prayed over and out stat.
I am finding out who I am NOW. I am learning that I am important too, and that I don't have to keep taking a backseat while everyone around me eats their cake. I'm going to eat some damn cake too!
I have not written things on this blog because I have worried about hurting feelings, but this is MY blog and my outlet. This is my place to write and share my journey and if I hide these ugly parts then I'm just being a Christian robot(which I cannot stand) acting like life is peachy keen. I'd be hiding behind that uniform and I'm just not willing to do that. I believe in transparency. I believe in honesty. I believe that the ugly bits that make some people fidget and uncomfortable are the very things that we need to bring into the light so they can be healed up. I've met plenty of elitists, and see how I could have followed that yellow brick road a couple of years ago. I was a youth leader, led a small group, and went to corporate prayer every week. Did that make me better? Did I think I was so spiritual because of what I could fill my planner up with? Now, being "a sickie" I understand that NONE of that stuff matters. They are honorable and in no way am I suggesting that if one does those things that means they are elitist snots. No, I am saying that FOR ME, for my life, I have come to terms that those to-do's, even raising children, or anything we "accomplish" pales in comparison to simply knowing Jesus. I want to get there. I want to STOP. I want to not be that woman who has lived on accomplishment.
There's a lot of pride that camps out in us. When you get sick that all gets shaken loose whether you like it or not. When you have to pull over on the side of the road to vomit violently, when you swallow 10 pills at a time 4x a day just to try to "rebuild" your immune system, when your ex-best friend betrays you and breaks your heart, when people you've known for 19 years treat you like you are nothing because you don't fit in their tidy little world anymore, when you've spent more time in hospitals and at doctors appointments then you have doing anything else for over a year, when those very people who lavished "love" and hugs on you when you were "popular" or involved at church but who haven't bothered to ask how you're doing NOW and who blatantly ignore you, when you have been angry, mean, and unpleasant a lot of the time because your body has become your enemy.... the pride starts to jangle and just pour out.
It doesn't feel good one itty bit, but it's a good thing.
I never want to be so content with my own little life that I stop depending on my Savior. I never want to be so defined by "my" lists of achievement that I fail to remember who made this all possible. Who has healed me, redeemed me, saved me from the pit. I have so many dreams in my heart and right now they all circle my brain. I feel impatient. I feel like busting out and just DOING.
That's my issue. For all of my life I have been a do-er. I do. It is so challenging to not be that anymore. I look at other people's lives on facebook and I have compared. I never used to do that! Seriously. How humiliating to have to admit that, but again, I believe I must be honest and transparent. I have coveted things. Being so sick has felt surreal at times. I have felt like I don't measure up because I am so limited. I have fought back so dang hard. Fists flying (not literally) to beat these diseases. And I'm tired.
I'm coming into acceptance that I am going through this. This is my role. This is where Papa has me today. I believe I can be spontaneously healed. I don't believe that these diseases have to stay. I don't believe God wants me to be sick. I have cried so much... asking if I have done something. Asking if I am being punished for something. Wondering if my past has brought about these serious illnesses. I have wondered if God has forgotten me. And when it all comes down to it I know those are lies. For whatever reason I AM sick. I am going through this and it's miserable and difficult and I have lost many friends, BUT my God is still bigger. He is doing so many things and utilizing this black hole in ways I cannot even fathom and see. There is healing being done. There is a relationship with my parents that I've never had. They have become my best friends. There is a relationship with my sister in law. There are very real things happening in the spiritual realm that I can't see and that is so exciting!
It started last month with the physical therapy appointments. 3 a week for about a month. I started off with a bang. And it helps. It truly does, but what I also had to face yesterday is that it also hinders.
It finally hit me yesterday during my quiet/prayer time that I am not supposed to push myself and that is what I do. I suck it up. I just do it. That mode of operation no longer works for me.
That is the constant battle. Who am I now vs. who I used to be?
I don't think I have the answer to that yet.... at all.
At physical therapy I was up to 20 minutes on the bike, 3 weight machines, an exercise ball, stretches, and the electrical stimulation at the end. I was feeling good. Like I was finally, finally, finally doing something but then I would crash and I ended up missing at least 4 sessions. It was such a debate in my mind. That old nagging feeling that if I quit I was giving up on myself. Then in a spectacular moment yesterday I realized that maybe for the first time I would actually be doing better for myself by actually putting myself first with no regard to the what if's...
So I made the decision to stop physical therapy and to cancel the follow-up with the ortho doctor. I will continue my stretches, pool exercises, and do the bike 3x a week here at the complex gym and I am satisfied with that. It takes far more energy that I don't have in the first place to get ready, be driven 30 minutes to another town to get therapy and then come home. Before all of these appointments I went out one day a week. One. Sure I made the pit stops at Safeway or the library but never for long periods of time. Suddenly I was out about 5 days a week. I've had no less then 3 appointments, sometimes 4 on any given week in the last month and I just won't do that anymore. I was 3 sessions shy of finishing and then next week I was to go back to the ortho who would assess whether or not I need more or whatever.
I feel peace at making the decision to cut back. I really wrestled, but in the end it is about stress management and what I can and cannot handle. It's difficult to admit that I couldn't handle it, but that's what the reality is.
I don't get the luxury of trying to "cut down" on stress like it's some polite thing or a mere suggestion. I literally cannot handle stress. I have a heart problem, a viral infection that will never go away that is slowly invading every cell, every part of me... I have fibromyalgia and the list of ailments that accompany that. It's too much to try to swing everything at once. That choice belongs to someone else. So I am scaling back. It took forever and a day to stop feeling guilty when I didn't go to parties or birthdays or weddings or baptisms, but I'm finally at this place where I am accepting that the people who don't respect that... who "overlook" (and that is being kind) MY serious medical illnesses because it's not convenient for them... they don't get to be a part of my life anymore. That's it. Point blank.
As a woman who loves Jesus and believes wholly in the Bible I have always struggled with what it means to serve without being walked all over. People say "God didn't call us to be doormats." I used to tell people that all the time, but I see nowhere in scripture where that is true. So I always just let everyone else get what they want out of life and I would sit back. The supporter. The cheerleader (not literally). The best friend.
And now here I am. I am redefining EVERY relationship I have. Every routine I have. Every habit that I want to be broken. I am being called sweetly to the heart of Jesus again. The getting back to the basics of what it means to love Him and worship Him. I have a lot of questions and anger at hypocrisy I see in certain churches. I am questioning the cliques I see, I am questioning the Christian trends, I am not a fan of western churches. I really am not. I think of the Philippines everyday. I think of the humility, the simplicity of being in love with Jesus and trusting Him for miracles. I realized whilst journaling yesterday that I have been "sick" way before it got this bad. Way before the physical came and stole everything. I literally got sick in the Philippines and I never recovered. But the sick I am speaking of is that the very night I got back from the Philippines I walked into my home church and just felt despair.
I was wrecked for another country. The next night at our annual youth conference I could only cry during worship. It was so loud, so big, so.... something I could not define. I was heartbroken. I didn't want to be there. I didn't want to sit in the air conditioned building singing those songs and acting like being in love with Jesus is some cool kids club.
It's just so not.
So I started to become heartsick. When people would ask me about the missions trip I couldn't explain, couldn't describe my heart and the brokenness and yet complete wholeness. I couldn't even understand why I resented being home. A small group of us started working on plans for a non profit organization to support the Philippines and we were planning our next trip. We got a name, a website, and things were rolling. For now that is still something being prayed over and I believe it will come into fruition at the timing of God. My heartsickness continued and I stopped hanging out with people. I stopped putting so much into the things that don't matter here in spoiled America. And I kept getting sicker physically.
I'm examining everything. I'm coming back to the heart of worship. I'm being called to sit and relish in Jesus and not get so caught up in the trends of American churches. Even speakers that I adore, books I read- God is telling me to read His book alone for TRUE guidance. These other people are amazing, but that's just it... they are people. They aren't God.
And my boundaries continue to be erected one small bit at a time.
I am starting to love more and more the idea of living off the grid and have debated deleting my facebook and everything. I won't because my family and besties that live far away are on there and it enables us to stay in touch, and my fabulous fibro family is there of course, but I find facebook to be quite narcissistic. I hate having a cell phone.
I'm all over the board but that's how I feel lately. Everything is coming out and being redefined under the Lord and His plans for my life. I have debated going back to school online since I am not much for being out of the house anymore. Then I started thinking I will wait on that as right now I am concentrating on the grieving of my old self and acceptance of the me NOW. It's the hugest battle I have ever had! Seriously it is bringing up things from childhood, my past in my early twenties, and all the crap now. I have been healed and set free from so much over the years but I am finding that there is still so much in there that I have held onto! Things that I was not even aware of, and things that need to be prayed over and out stat.
I am finding out who I am NOW. I am learning that I am important too, and that I don't have to keep taking a backseat while everyone around me eats their cake. I'm going to eat some damn cake too!
I have not written things on this blog because I have worried about hurting feelings, but this is MY blog and my outlet. This is my place to write and share my journey and if I hide these ugly parts then I'm just being a Christian robot(which I cannot stand) acting like life is peachy keen. I'd be hiding behind that uniform and I'm just not willing to do that. I believe in transparency. I believe in honesty. I believe that the ugly bits that make some people fidget and uncomfortable are the very things that we need to bring into the light so they can be healed up. I've met plenty of elitists, and see how I could have followed that yellow brick road a couple of years ago. I was a youth leader, led a small group, and went to corporate prayer every week. Did that make me better? Did I think I was so spiritual because of what I could fill my planner up with? Now, being "a sickie" I understand that NONE of that stuff matters. They are honorable and in no way am I suggesting that if one does those things that means they are elitist snots. No, I am saying that FOR ME, for my life, I have come to terms that those to-do's, even raising children, or anything we "accomplish" pales in comparison to simply knowing Jesus. I want to get there. I want to STOP. I want to not be that woman who has lived on accomplishment.
There's a lot of pride that camps out in us. When you get sick that all gets shaken loose whether you like it or not. When you have to pull over on the side of the road to vomit violently, when you swallow 10 pills at a time 4x a day just to try to "rebuild" your immune system, when your ex-best friend betrays you and breaks your heart, when people you've known for 19 years treat you like you are nothing because you don't fit in their tidy little world anymore, when you've spent more time in hospitals and at doctors appointments then you have doing anything else for over a year, when those very people who lavished "love" and hugs on you when you were "popular" or involved at church but who haven't bothered to ask how you're doing NOW and who blatantly ignore you, when you have been angry, mean, and unpleasant a lot of the time because your body has become your enemy.... the pride starts to jangle and just pour out.
It doesn't feel good one itty bit, but it's a good thing.
I never want to be so content with my own little life that I stop depending on my Savior. I never want to be so defined by "my" lists of achievement that I fail to remember who made this all possible. Who has healed me, redeemed me, saved me from the pit. I have so many dreams in my heart and right now they all circle my brain. I feel impatient. I feel like busting out and just DOING.
That's my issue. For all of my life I have been a do-er. I do. It is so challenging to not be that anymore. I look at other people's lives on facebook and I have compared. I never used to do that! Seriously. How humiliating to have to admit that, but again, I believe I must be honest and transparent. I have coveted things. Being so sick has felt surreal at times. I have felt like I don't measure up because I am so limited. I have fought back so dang hard. Fists flying (not literally) to beat these diseases. And I'm tired.
I'm coming into acceptance that I am going through this. This is my role. This is where Papa has me today. I believe I can be spontaneously healed. I don't believe that these diseases have to stay. I don't believe God wants me to be sick. I have cried so much... asking if I have done something. Asking if I am being punished for something. Wondering if my past has brought about these serious illnesses. I have wondered if God has forgotten me. And when it all comes down to it I know those are lies. For whatever reason I AM sick. I am going through this and it's miserable and difficult and I have lost many friends, BUT my God is still bigger. He is doing so many things and utilizing this black hole in ways I cannot even fathom and see. There is healing being done. There is a relationship with my parents that I've never had. They have become my best friends. There is a relationship with my sister in law. There are very real things happening in the spiritual realm that I can't see and that is so exciting!
Wednesday, April 6, 2011
Physical therapy has been going well. I am now up to 20 minutes on the exercise bike, still doing the yellow ribbon stretches, the calve stretches, BAPS, the black weight machine thing (I don't know the name), towel scrunches, and we added a new one where I step on an exercise ball thing (attached to a weight machine) and balance. It's got me working hard and it feels GOOD!
I'm midway through my massive list of appointments for March and April. Today was my second appointment at the Fibromyalgia Treatment and Learning Center. I was nervous all morning but telling myself not to be. I knew the blood test results were in and I alternated between thinking the worst and wondering if they would find nothing at all.
What I got was something in-between.
This time I saw the other doctor who works at the center. He too was extremely informative and kind. No belittling fibro here. I love going to a doctor who not only believes in this disease but who specifically targets it. The outcome is completely different from going to a clinic or hospital where they have no idea what to do with you and your myriad of ailments except pass you off to someone else or else prescribe pill after pill instead of actually tackling the actual disease.
Today would not mean a lot to anyone else because what we did was go page by page over the blood tests submitted last month. Remember the 16 vials of blood drawn awhile back? The hair samples mailed off? Well, today was the day for some answers.
I will not bore you with the specifics... how much I should up or decrease certain supplements, when to go back in for more blood tests (4-6 weeks), etc. Instead I will tell you that out of all of the blood tests (one did not have an accurate reading and needs to be re-done, and another for Epstein-Barr Virus was not tested yet) what was revealed is that sometimes in childhood we get certain viruses but our body naturally protects and fights them off. Some of those infections can still live in us and lay dormant. I have a viral condition called HHV-6.
I got this information on a site and paraphrased a little:
"Known viruses (such as EBV, Ross-River virus, and HHV-6) can undergo adaptations that allow them to hide from the immune system. They become "stealth viruses" that literally sneak up on our body. Usually when a virus enters our bloodstream our immune system's antibodies attack that virus immediately. But "stealth viruses" are able to hide themselves from those antibodies. They do their damage to our cells on the sly. Because these viruses are so skilled at hide and seek, some often remain undetected even after an all out attack on your immune system. Meaning long after we recover from an intense illness just a bit of the virus can hang around making us feel below average healthwise."
Wow, isn't that a mouthful?
The second result is that I have a mutation defect (60% of the population have this issue): MTHFR - (Methylene-tetra-hydro-folate-reductase) is an enzyme found in the cells of our body. It is needed to metabolize (break down) homocysteine, an amino acid found in the proteins you eat. There is NO CURE for MTHFR mutation. If you have the mutation, that's the way your body is made however you can lessen any risk factors you have by taking B vitamins, Folic acid and baby aspirin. MTHFR mutations are hereditary. Families with significant early cardiovascular disease or recurrent pregnancy loss might benefit from clinical investigation."
Hmm, both of my parents have heart issues and I did lose a baby. Could this have contributed?
Next up we went over Triiodothyronine. (T3) is a thyroid hormone and plays an important role in the body's control of the metabolism. The normal range is 6-10 and I am at 11.6, which means I got another fun medicine to take to increase my energy. The doctor was super specific about not doing too much when I start to feel energy. He was insistent that I rest and not push myself. Meaning I can do what I do (take care of Mylie, physical therapy, laundry, etc. Whatever the day brings.) but just as all of these months I have to prioritize and not overdo it. We talked a lot about how this is a lifelong process and that it will take about a year and a half (depending on my body) to stabilize and bring me to a place where I am not just in "survival mode".
I told him how I started to get anxiety back in September and that 2 months when all was super stressful at the home-front I started to have panic attacks. He asked how often and I told him once a week or every couple of weeks depending on the stress. He prescribed xanax (after I told him diazepam has worked) but only for extreme cases of anxiety. I am not a fan of pills so it won't be a problem to not abuse them. Yuck. I hate medication, but I must take these supplements and all to manage these things tearing apart my body.
We discussed how Fibromyalgia is actually a Neuro Immune Disorder (affecting the nervous system and the immune system) and that when stress comes my body basically gets into "fight or flight" which is where the panic attacks come in. The stress basically sucks EVERYTHING out of me and is focused on only the stress response so I start to get hot and freak out and feel like I have no control (nice to know I'm not just nutty!). He said the charcoal caps could help relieve anxiety but for extreme cases to take the xanax. I had to explain how stressful it was with all of the baloney the last couple of months. He could tell I'm of sound mind and even remarked how cheery I was. That's a plus. We discussed diet some more and I told him I can definitely feel the difference if I've had sugar or whatnot. It REALLY does worsen the fibromyalgia.
All of my hair sample stuff came back fine. I was high in aluminum, barium, and silver and low in lithium, phosphorous, cobalt, and germanium. He suggested I start using an aluminum free deodorant. These aren't major issues so I'm good in that area. :)
I did not have enough funds to get the stool kit test. Maybe next month. I go back in May, and I can tell you I am quite pleased thus far. I am grateful for much needed prayer, financial provision, and doctors who know what they are talking about. I am not 100% but I am starting to understand my illness better, have increased energy (not quite Wonder Woman status but more then I've had in a really long time), improved sleep, and the belief that I AM LIVING! I am exercising again (thanks to physical therapy) and eating healthy. I am smiling again.
I know this is a battle. I know I cannot push myself. I know it's a process. Sometimes the dreams I have get so huge in my head and I can't wait until they come into fruition, but then I remember my God has me exactly where I need to be right now.
This is an uphill climb. There are no shortcuts. I am working hard to live a life worth living. Not giving in to some disease that is trying to stake it's claim. I still cry sometimes. I will cry again. I have "good" days, so-so days, and miserable ones...
but I am getting better day by day.
Emotionally I am full of JOY! There is no bowing down to this monster.
Right now I am praying for more sponsors and the ability to keep up with the medications via donations. It was suggested (Thanks Korinne!)that I put a donation button on my blog but for the life of me I cannot figure it out. There is an important medication for my thyroid that my insurance will not cover. It cost $103.99 for 60 pills. I am praying that the funds will come in these next couple of days. God knows my needs. Praise for that!
Thanks for reading.
<3
I'm midway through my massive list of appointments for March and April. Today was my second appointment at the Fibromyalgia Treatment and Learning Center. I was nervous all morning but telling myself not to be. I knew the blood test results were in and I alternated between thinking the worst and wondering if they would find nothing at all.
What I got was something in-between.
This time I saw the other doctor who works at the center. He too was extremely informative and kind. No belittling fibro here. I love going to a doctor who not only believes in this disease but who specifically targets it. The outcome is completely different from going to a clinic or hospital where they have no idea what to do with you and your myriad of ailments except pass you off to someone else or else prescribe pill after pill instead of actually tackling the actual disease.
Today would not mean a lot to anyone else because what we did was go page by page over the blood tests submitted last month. Remember the 16 vials of blood drawn awhile back? The hair samples mailed off? Well, today was the day for some answers.
I will not bore you with the specifics... how much I should up or decrease certain supplements, when to go back in for more blood tests (4-6 weeks), etc. Instead I will tell you that out of all of the blood tests (one did not have an accurate reading and needs to be re-done, and another for Epstein-Barr Virus was not tested yet) what was revealed is that sometimes in childhood we get certain viruses but our body naturally protects and fights them off. Some of those infections can still live in us and lay dormant. I have a viral condition called HHV-6.
I got this information on a site and paraphrased a little:
"Known viruses (such as EBV, Ross-River virus, and HHV-6) can undergo adaptations that allow them to hide from the immune system. They become "stealth viruses" that literally sneak up on our body. Usually when a virus enters our bloodstream our immune system's antibodies attack that virus immediately. But "stealth viruses" are able to hide themselves from those antibodies. They do their damage to our cells on the sly. Because these viruses are so skilled at hide and seek, some often remain undetected even after an all out attack on your immune system. Meaning long after we recover from an intense illness just a bit of the virus can hang around making us feel below average healthwise."
Wow, isn't that a mouthful?
The second result is that I have a mutation defect (60% of the population have this issue): MTHFR - (Methylene-tetra-hydro-folate-reductase) is an enzyme found in the cells of our body. It is needed to metabolize (break down) homocysteine, an amino acid found in the proteins you eat. There is NO CURE for MTHFR mutation. If you have the mutation, that's the way your body is made however you can lessen any risk factors you have by taking B vitamins, Folic acid and baby aspirin. MTHFR mutations are hereditary. Families with significant early cardiovascular disease or recurrent pregnancy loss might benefit from clinical investigation."
Hmm, both of my parents have heart issues and I did lose a baby. Could this have contributed?
Next up we went over Triiodothyronine. (T3) is a thyroid hormone and plays an important role in the body's control of the metabolism. The normal range is 6-10 and I am at 11.6, which means I got another fun medicine to take to increase my energy. The doctor was super specific about not doing too much when I start to feel energy. He was insistent that I rest and not push myself. Meaning I can do what I do (take care of Mylie, physical therapy, laundry, etc. Whatever the day brings.) but just as all of these months I have to prioritize and not overdo it. We talked a lot about how this is a lifelong process and that it will take about a year and a half (depending on my body) to stabilize and bring me to a place where I am not just in "survival mode".
I told him how I started to get anxiety back in September and that 2 months when all was super stressful at the home-front I started to have panic attacks. He asked how often and I told him once a week or every couple of weeks depending on the stress. He prescribed xanax (after I told him diazepam has worked) but only for extreme cases of anxiety. I am not a fan of pills so it won't be a problem to not abuse them. Yuck. I hate medication, but I must take these supplements and all to manage these things tearing apart my body.
We discussed how Fibromyalgia is actually a Neuro Immune Disorder (affecting the nervous system and the immune system) and that when stress comes my body basically gets into "fight or flight" which is where the panic attacks come in. The stress basically sucks EVERYTHING out of me and is focused on only the stress response so I start to get hot and freak out and feel like I have no control (nice to know I'm not just nutty!). He said the charcoal caps could help relieve anxiety but for extreme cases to take the xanax. I had to explain how stressful it was with all of the baloney the last couple of months. He could tell I'm of sound mind and even remarked how cheery I was. That's a plus. We discussed diet some more and I told him I can definitely feel the difference if I've had sugar or whatnot. It REALLY does worsen the fibromyalgia.
All of my hair sample stuff came back fine. I was high in aluminum, barium, and silver and low in lithium, phosphorous, cobalt, and germanium. He suggested I start using an aluminum free deodorant. These aren't major issues so I'm good in that area. :)
I did not have enough funds to get the stool kit test. Maybe next month. I go back in May, and I can tell you I am quite pleased thus far. I am grateful for much needed prayer, financial provision, and doctors who know what they are talking about. I am not 100% but I am starting to understand my illness better, have increased energy (not quite Wonder Woman status but more then I've had in a really long time), improved sleep, and the belief that I AM LIVING! I am exercising again (thanks to physical therapy) and eating healthy. I am smiling again.
I know this is a battle. I know I cannot push myself. I know it's a process. Sometimes the dreams I have get so huge in my head and I can't wait until they come into fruition, but then I remember my God has me exactly where I need to be right now.
This is an uphill climb. There are no shortcuts. I am working hard to live a life worth living. Not giving in to some disease that is trying to stake it's claim. I still cry sometimes. I will cry again. I have "good" days, so-so days, and miserable ones...
but I am getting better day by day.
Emotionally I am full of JOY! There is no bowing down to this monster.
Right now I am praying for more sponsors and the ability to keep up with the medications via donations. It was suggested (Thanks Korinne!)that I put a donation button on my blog but for the life of me I cannot figure it out. There is an important medication for my thyroid that my insurance will not cover. It cost $103.99 for 60 pills. I am praying that the funds will come in these next couple of days. God knows my needs. Praise for that!
Thanks for reading.
<3
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