July 25, 2016

Today is my appointment! This past weekend has been a roller-coaster of ups and downs. I would get a few good hours here and there where I could actually get up and move around, but then I would pay for it later. The pain has not only been in my head and jaw, but in my knees and especially in my hips and pelvic region. Even in my chest as I was on my way home from church yesterday. The numbness comes and goes as well, but is present in my feet and legs more often than not. I also have been enjoying the “bugs under the skin” issue again as well. I had been doing really well at battling my fatigue by getting healthy and I was even down to just ONE cup of coffee in the morning. Anyone who really knows me, knows that coffee is my crack. Unfortunately, since all of the other symptoms have become much worse, so has the exhaustion. I am not talking about feeling tired or worn out all day. I am talking about literally struggling to keep consciousness. My eyes feel heavy and droop closed at times, even during conversation. I have been getting splitting headaches the last three days as well. They aren’t migraines. I have suffered from those and they are much worse, but these headaches are killer none the less.

I feel like I have been living in a cloud as of late. It takes me 5-10 minutes just to write a simple text message I actually started this post last night, but couldn’t even remember how I had been feeling and my thoughts were all scrambled. When I opened it back up this morning I could barely make out what I wrote and I had to start over. I have been working on this one for about two hours. And thank God for spellcheck. It’s so frustrating. I feel like I am just dismissed when I tell people about my symptoms. Especially the “brain stuff”. I have always had blonde moments, just like everyone else, but this is different. I know myself. I had always enjoyed reading, at least two books a month. Now I can barely sit and read a chapter without getting confused and having to reread sentences over and over again. It is beyond frustrating and depressing.

I guess this is why I have been searching for God lately. I have harbored so much anger my whole life for the hell I have had to live through since I was just a baby, but now I am just tired. I don’t want to be angry anymore. I want to understand why. I need to give it all to God and hopefully he will show me the way.  

Well, I best be getting ready for my appointment and I will post an update this evening! Thank you all so much for your support and prayers. 

July 21, 2016 - UPDATE

***UPDATE***

What an eventful afternoon this has been! But let's pick up where I left off this morning. About 11 am I texted my mom and told her I was going downhill, "feels like I am headed back to where I was in January." So there I am, just working away and that pain in my jaw is getting more and more intense. I can barely even move it by 2:30 pm and I'm doing all I can to hold back the tears. My husband's chihuahua Leia has always been very intuitive when it comes to my health issues. Today I am in pain and she hasn't left my side. I'm trying to decide at this point if I should try calling my pain specialist back again. Not sure it would do much good... I have an appointment next month. Well, here's where it gets a little crazy.... all the sudden she (Leia) is in my face, licking me non stop. I keep trying to push her away, but she's insistent. That's when I feel it... or well don't feel it. I can barely feel her tongue anymore. I put my hands to my face. There is barely any sensation on the lower portion. At least on the outside; I can still feel the shooting pain throughout my jaw quite intensely. 

Alright, time to call the doctor. I called and asked to leave a message. I can feel the left side of my body getting "tingly" and Leia is very upset. I told the young woman I spoke with that I have an appointment next month, but I am having a full on relapse to how I was when I first came to see her, I have severe pain in my face, and my body is going numb again.... is there anything she suggests or can I at least take something stronger than an Advil. Asks me to hold. No problem. Holding is better than talking. I wonder if she even understood everything I said. I sound funny. 

When she gets back to me there are no suggestions and nothing I can take. My appointment in August in now a rushed appointment on Monday! Guess things are a little more serious than I thought. On the bright side... maybe I should get Leia certified as a therapy dog. I mean, this isn't the first time she has alerted me when things were about to go south, medically speaking. I guess we could be buds... my new PIC. Always watching out for mom. 

Hmmm, now I just need to figure out how I'm going to get to church on Sunday...

July 21, 2016

Every single day...

Well, today already sucks. I have pain shooting through my jaw and face, my hands feel like I am being stabbed with tiny pins all over while being strangely numb(ish) at the same time. Cognitively I am struggling to get words out of my brain timely, if at all. My joints hurt like a.... well, let's just keep it clean and say bad. They hurt bad.  Even with 1800mg of Gralise, various ointments and a pain patch. Good news is that my mom's friend sees a Rheumatologist without a referral so I called that office and got an appointment. I still can't get in until September, but at least I doing something instead of accepting "I don't know." as a good enough answer.

I'm just glad my hubby gets back in town tonight. He has a way of helping me relax and feel (if only a little) better.

Overnight Oats

Overnight oats are my favorite on the go healthy breakfast! Just throw some ingredients together the night before and it's ready to eat the next morning. Perfect for busy professionals or moms on the run!  

Overnight Oats

Ingredients:

1 Tbs. Chia Seeds

½ Cup Old Fashioned or Steel Cut Oats – No Quick Oats

½ Cup Low Fat Vanilla Yogurt 

½ Cup Vanilla Almond Milk

½ Cup Fresh Fruit of Your Choice, chopped if needed

Combine all ingredients in air tight container and place in refrigerator overnight. You can make up to 4 days ahead of time. 

You can even substitute the yogurt for peanut (or almond) butter for a richer flavor and creamier texture. 

July 20, 2016

My mom suggested I start a pain dairy to keep track of my symptoms so I know how I am doing and I can relay the most accurate information to my doctor… so here we are.

A few months back I was sent to another specialist to get an EMG preformed and he mentioned that I may want to check in to seeing a Rheumatologist in addition to my regular pain specialist. When I followed up with my doctor she made no mention of sending me to anyone else and I honestly had forgotten the suggestion. See, I forget things a lot. My mind is constantly swimming around in this hazy fog…

Ever since my misadventure in trying to get off my medications to get pregnant I have been in more pain than usual. Even on the drugs. Well, this morning I woke up and I was in pain again. Not crippling pain, but pain none the less. My mom has been bugging me about seeing a Rheumatologist since my doctor just says “I don’t know what’s wrong with you for sure” and “You are better than you were.”  She has insinuated to Lupus many times, but we don’t really know. I called my specialist and asked for a referral. About 10 minutes after I left my message I got a call back asking why I needed the referral. I had already explained all that when I left my message asking for it in the first place, but I explained again and let them know that the other specialist recommended it. Long story short… there was no mention of it in his notes so I was denied, but I could always make an appointment with her. Only thing is… she’s booked until September. I actually scheduled to see the RN in three weeks in hopes that she can at least refer me.

Why is “I don’t know what’s wrong with you for sure, but you are better than you were.”  supposed to be acceptable to me? Why not send me to another specialist they may be able to help? Obviously she doesn’t need patients that bad if we have to wait two months just to get in. By 3:00 this afternoon I felt (and still do) like there were thousands of tiny bugs crawling underneath my skin in certain areas. Not only is it one of the most disturbing symptoms I have, it’s also quite painful. Also, the pain in shooting through my face and jaw. My hands are also one of the most affected areas. They ache, especially in the joints, constantly and I can’t even wear gloves without just about coming unglued. The feeling of the gloves on my hands are almost like when you go weak in your knees, but with a stabbing sensation as well. Not fun.

All that being said, I am still thankful for the many blessings in my life and for the wonderful support system I have. I will choose to be happy. I will choose to be strong. And I will choose to keep my spirit high no matter how bad my body tries to drag me down.

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18

WTH is wrong with her?

I have been diagnosed with PCOS for about 5 years now. I have had 8, yes 8, surgeries to remove cysts from my ovaries. There used to be about 20-30 per ovary at any given time. I started metformin about 2 years The beginning of this year was hell. I was in excruciating pain throughout my entire body, then I actually lost feeling on my entire left side. I was terrified. I saw a neurologist and they literally took a safety pin and poked me from head to toe to test how much feeling I had. It wasn't much. She tested my reflexes and I had none on the left side of my body and the right side was hyperactive. The first thought was that I had MS (Multiple Sclerosis). My step mother has this disease so I knew how horrible it was and that scared me. She sent me for a MRI and it came back perfect. She wasn't convinced since though because in the beginning it doesn't always show the lesions on your brain yet so I had a ridiculous amount of blood drawn to rule out or detect that and/or some other disease. My B12 levels were normal so thank the Lord they ruled out MS. She put me on some medication for nerve pain then referred me to a pain specialist.

My mom went with me to see her and she prescribed a pain patch since I was doing better with the nerve meds but I was still in pain. She suspected I had Guillain-Barre syndrome so she referred me to another neurologist to perform an EMG. This is where they stick needles in your muscles and send electrical pulses through it. It was EXTREMELY painful. My husband was there holding my hand as I cried and poked fun at me so I would laugh and distract me from the pain. God has blessed me with an amazing husband. The test came back normal so she really believes that I have Lupus.

I improved so much over the next two months that my husband and I decided to try for a baby again. My doctor helped me to dose down on my medication. She also wanted me to do physical therapy, but she gave me the option of joining a gym instead. I decided gym was the way to go. As I was coming off my medications I would go through withdrawals with each dose down. I didn't join a gym yet, but I was doing yoga in the mornings to help with my stiff and painful joints. I signed up for a competition even at Nutrishop Firewheel for total inches lost. At this time, we had to face reality... without my meds I had a complete relapse. I started my medication again and went back to yoga and eating right. And guess what!? I won that competition! I lost over 10 inches and 3 lbs.! I joined a gym on Sunday and I have been enjoying going. I have struggled with weight my whole life, but I am done blaming the PCOS and I won’t let Lupus stand in my way of being who I want to be either. I am a strong woman and I know I can overcome anything with God at my side! I am so blessed to have my wonderful husband. I am also blessed to have my mother even though she’s a little on the crazy side sometimes. She has been there for me whenever I times get hard. I actually weighed 168 back at my Doctors appointment in January. I am now 150! I wish I had my measurements from then. All I have is June 4th to July 1st, but I will keep measuring every month and keep posting my progress along with recipes and possibly some workouts. I am currently working on a Health & Fitness Binder and I will post the FREE printable when I am done.