I'm so glad to get this year over with! I had hoped to be well in starting the new year but my Lyme seems to be relapsing already. Since being in the hospital my health has crashed. I constantly have headaches and borderline migraines every day. I wake up with them and try to go to bed with them. My bodies pain level has spiked and I am on edge dealing with the emotional response to it. I hurt everywhere. The cold weather does not help and thankfully it's cloudy outside or I would be in my dark room and not on the couch with the kids. Today I lost my sense of taste. I have no idea why. Which stinks because I plan to feast tonight with friends.
Last night I held a presidency meeting and I could not focus nor complete a thought to plan the next step of action. I had horrible thought block. I sat down afterward and tried to gather my self and could not. I barely fed the kids and then put them to bed. I decided it was time to take my pills that help me sleep and unfortunately it did not work. I was up for maybe 3 more hours in a drugged up state. I threw those pills away. I live in this internal hell and at night all I want to do is sleep. My body just spasms and twitches uncontrollably and I cannot relax. My mind is clear but my body is wild.
I have had a reoccurring dream where I am having a full blown seizure. I always wake up completely exhausted from the dream and emotionally drained. I think I am scared that my condition will come to this without treatment. I am current working with my insurance company to cover my past procedure.
I have to go to the store today. I may send my husband. It's Las Vegas and its 40 outside. Plus when I venture out I must tough it out, put on my "stick it to Lyme" attitude and once I'm home I can crash for a few hours. Sometimes it's just not worth it. Preserving energy sounds better every second.
My blood sugar has been running low for 2 weeks now. As low as 56. I eat properly, having glucose when it drops and eating proper carbs and protein to carry it on. Sometimes it will only raise it to 80. I haven't been over 100 in a while. Even on a big meal.
None of it makes sense. My hospital visit showed the same test results. One of my heart valves is only operating at 50%. Everything else looks great. Perfect even. I was once again told how strange it was for some one my size. (Let's just say I'm under 130lbs.).
I plan to declutter my home in January and February. In case we have to move it will be easier to pack. If we stay then I can plan to paint and maybe set the home up how I really want it. There is stuff everywhere. I see so much coming in and nothing leaving. It's driving me mad! My bedroom is packed in and I'm about ready to absolve my office. I never use it. I will be happier with less. Much less.
It will have to wait until the end of January for me to recover from my surgery. I was told 7-10 days to recover from sinus polyp surgery... Thankfully my mom is taking it off. My hubby is taking care of me the first day and my mom for the rest, while he is at work. I'm not looking forward to it but will be glad when it's over. Then I can start on my back. I may or may not have surgery to help the scoliosis. It has always caused pain but in the recent years, and 4 babies later, I have had increased pain in my hips, right shoulder blade and back in general. I lose feeling in my right arm a lot and often have a hard time walking from the hip problems scoliosis has brought. My discs are nearly squished in certain places and with age will only get worse. I will see the doctor soon to discuss it. In the mean time I will visit my Infectious Disease doctor again about my recent drop in quality of health.
I feel discouraged almost daily but don't give up. I'm just always in pain so I have a constant reminder of my situation that I cannot escape from. I have grown stronger and more tolerable to pain. I breath steady and deeply on a regular basis as a form of pain control. Resting more and asking kids to be quiet or play in their rooms. Poor kids, they don't go places besides school and church. They know I'm not well and they understand but it's still not fair to them. I know they will be fine it's just hard for them to hear of how much their friends at school and church are seeing and adventuring so much. We couldn't take them to our neighboring mountains for a quick hike since all 5 tires, (yes the spare, too) are past the worn tread mark. They are all cracked and rotted. We seriously live on tithing blessings and its a miracle we have lasted this long!
Moving, I shudder to think of it! Not while I'm sick. Not while I can barely keep up with laundry, dishes and regular household chores. If so then I want a low maintenance home. No big landscapes, mostly patio covered backyard and in a culdesac. This place is good but not easy for me to upkeep. We will know more in a couple of months... I hope.
Until then, I think I will just nap. It sounds perfect about now....
Yesterday was my husband Bryan's birthday. I had so much planned for the day. I had our sitter lined up and surprise's ready to go. About 9:30 in the morning I was excitedly discussing plans for the day and as I was laying in bed with our waking 4 year old I began to have an intense stabbing pain in my chest. It followed by intense pressure and I had to sit up and breathe through the pain. It wouldn't go away. It would wax and wean for almost an hour before I decided to give in and finally get checked into the hospital.
I spend the time waiting in the E.R. for tests and results while my hubby tried to enjoy the rest of his afternoon watching Walking Dead. My nurse, Bryan, had brought my hubby two muffins and coffee to celebrate his special day. It was very sweet of him. Really great guy.
As we are sitting there, my husband gets a call from our landlord/ family wishing Bryan a happy birthday and questions if he had checked his email. I am sent away for x-Rays and upon returning find my upset husband still there. After we were alone again he explained to me about the email. Our home that we are renting will be short sold in 6 to 8 weeks. We will be moving... AGAIN.
Then as soon as that discussion is over I find out good news that there are no blood clots causing the pain. I was ordered a stress test and that required fasting and an over night stay. Yea.
As I'm waiting for the next move, I see on Facebook that my Uncle Jim is going into emergency surgery. So I call my mom immediately. She is already on the phone so I talk to my dad. He told me he is having heart issues and it may be in a bypass surgery. I finally get to talk to mom a bit but then I'm taken for an angiogram via CT scan. I was on the table in the radiology room and my heart monitor was dinging away. Fortunately they were able to get good pics and the doctor said I may be out soon and follow ing up with my cardiologist for more tests if I "passed" this test.
I get back to the room and try to find out more about my uncle. My cousin said he had an aneurysm.... I talked to my nurse about his status and was told that if its behind his heart that it was basically a widow maker and anything lower would be fixable. So I asked my cousin where and I understood that it was lower in his abdomen.
My doctor returns and explains my test results which were the same as last time and I am discharged. I encourage Bryan to enjoy the rest of his day and we drive around looking at shops. We finally decide on Big 5 and instantly head to the guns. After a few minutes I receive a text from my mom.
"Can you talk? Call dad." I immediately told Bryan that mom wanted me to call dad and I stepped aside. That's when I got the news from my dad. Uncle Jim died. He never made it to surgery. He woke up thinking he was having a kidney stone and the doctors sent him to the E.R. They did a CT scan and took him back almost right away. Hey tried to revive him and could not.
36 years ago on the very same day my grandpa died. Now his son joins him in heaven. What a birthday my husband had... Or should I say didn't have.
It still doesn't feel real. Such a crazy day. I will post more later but I need to rest. I need to check up on my mom and family in the morning.
I want to vent but have no where to begin. I'm overwhelmed. My body is physically taking on so much and I can barely keep up. I'm still recovering from a sinus infection so I need to give myself a break. I just cannot express how much pain I am in all the time. It doesn't make sense. It's an emotional roller coaster of being determined to overcome it, to being heavy hearted about my new reality, to asking myself every day why I am required by so many to live a normal life yet not being able to explain or express my situation so I can just say no. I think I need to go back to 3 counsellors again. I forced myself to go to all of church today. I hurt so bad. Today was difficult because everything is adding up. My memory is horrible. I can't articulate words to communicate the simplest sentences. It's embarrassing. I'm getting the feeling that others are getting tired of it, too. Having to pick up my slack and correct me all the time. I am being reminded of what to do next and as soon as I'm told I cannot remember what to do. I just stand there with this blank look on my face. I'm constantly forgetting things and cannot seem to make decisions at all. I go into the kitchen to make dinner and I just stand there, not knowing what to do. I'm not sure if my depression right now is making it worse, but the only reason I continue on is because I don't want to lose anymore friends. I feel I have burned more bridges this last year than I have ever in my entire life.
I meet tomorrow with my ENT to talk about my surgeries and then I can maybe know more about how soon I can get back to my Lyme doctors. I'm trying so hard to fight these trials I am being faced with and I feel I have never been weaker before in my life. Maybe it's because I have been fighting harder at them... Opposition is fighting back with as much force as I am delivering...?
I have thought to get off Facebook for a while. I subscribe to a lot of support groups and Lyme pages. Everyday I see posts about another person dying from Lyme or of another's horrible health from the years of Lyme even with treatments. I just don't think I'm emotionally strong enough right now to stay connected.
My oldest has a science project at school to do, on top of her science fair project mind you, and it's dealing with plagues and diseases. (Something like that.) My daughter told me she was assigned Lyme Disease. She has already begun to research it. Talk about a horrible assignment. Your teacher talking at school about all of these horrible diseases and illnesses in history and making the kids all come home washing their hands every 10 minutes from fear. Then mentioning how deadly some of them are... AIDS, Ebola, Scurvy, Lyme.... She came home and hugged me tight that day. I told her we should research it together. She said she already did a bunch at school. My daughters stress level has been a little high this week. I think I need to go in and talk to her science teacher. My daughter already knows the fact that I don't know when I contracted Lyme and she knows it's possible all my children carry it, too.
I've been overly busy with my church calling and know I will be blessed for doing it, but cannot help but think of how I'm having to give up so much of my family's needs right now because I cannot do it all. This is why I believe I need to call another counselor. I'm sure they won't release me... No one else wants the job. It's very involved... And I'm hardly keeping up with it. I haven't started visits to the children yet. I haven't done my part enough for these kids. My presidency seems to be planning events and discussing primary positions being in need of filling more than having time to discuss the individual needs of our kids. I'm going to fix that.
I just wish I could get past the guilt I have right now... From not being a president who's capable of fulfilling all that needs to be addressed. I know I have Lyme, but right now I'm called to be the primary president and I need to be able to do the job I was called for. I know I need to rely on the Savior right now. He is the only way I will be able to accomplish this calling. He is the only way I will be able to get through this until I am released.... From all my callings in life.
Fibromyalgia is a syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety.
Otherwise known as hell. Especially when you are sick with a head cold that is going into your lungs. Since Saturday evening I have been getting sicker and sicker. Makes sense since I am the mom of a boy who is a few days ahead of me with the same thing. Poor kiddo. It's tough seeing him sick. He just turned 7 and is such a sweetie. He wakes up every night with a night terror, nightmare or just from sleep walking... In which he is not silent about at all.
Now that he is sick, and myself as well, there is just no sleep schedule right now. It's pretty much he and I take naps all the time!
Tonight as I lay here trying what my hubby suggested, NyQuil for colds & Flu, I got excited thinking I may get some relief or sleep at least. Nope. Ok, well... My nose has stopped dripping. That's awesome! Nothing like being woken up to water trickling down your face only to find out it's from your nose. Yuck!
The pain is my biggest problem. It's a nightmare. Detox bath, music, massage, oils, happy thoughts, prayers.... A blessing. It's the only thing I haven't tried.
It's so hard to explain. My breathing even hurts my ribs. I want to just sleep all the time because it's the only time I don't feel pain. It hurts to move and the more excercise I get the more my bones hurt.
Over the last few months I have been given a few "Lymie's " phone numbers to call. I think it's time I reach out. I'm starting to feel too overwhelmed by the pain, depression and lack of clear thinking. I need some answers. I need to hear that I can find a way to stay on top of this.
I have heard of so many different ways to treat Lyme it's starting to spin my head! Too much to gather right now. So much trial and error and researching. I already have so much on my plate with my kids, hubby, household duties and most of all, my calling at church. It gives me a great distraction but gives me little time to take care of myself the way I need to be right now. I am relying on the Lord to bless me to endure until I am released so I may finally move forward and focus more on my health. If I can just ge through until the end of January, I think I will be better? The holidays are so busy and being unwell I have already missed 3 baby showers, two game nights with friends, many church events, date nights with the hubby and any socializing with friends.
Biggest part is I am not awake for very long at a time and I miss out on so much time where I could be doing other things besides sleep. It's taking me forever to type this because I have to give my body a break from the pain.
I know this blog, for now, has been my way to vent. I try so hard to not complain or even mention the pain. I don't want to focus on it nor be the complaining friend or spouse. It's tough... Especially when it feels like someone is ripping you apart on the inside, or stabbing you with a knife or shocking you until you cave and drop down. Seriously, it's a nightmare I live every day. I have better times than others, sure... But right now is not one of them. So much to do and so little of me to do it.
I did my CT scan of my sinuses today. It was very quick and easy and no IV's were needed since we are not looking for a tumor. My next appointment is Monday with my ENT to talk about the biopsy to check wether or not my polyps are malignant or benign. That will be fun, I'm sure.
I feel content now with my venting, so I'm glad I got it out! Haha! I have to be up in 4 hours to get my daughter off to school for crazy hair day... Yippee. Until next time!! Love all of you!
I have had a lot to be thankful for in my life. Every single day I wake up thankful for another day. Another day to be here on this earth, no matter what condition I am in.
This last month flew by for me. I have been focusing on my strength... Physical and mental. I went through a bit of depression recently and have pushed to over come it. On the days where my pain levels are not tolerable, when my mind is just not all there or when the fatigue is so intense all I can do is sleep... It's hard to be hopeful and motivated.
I feel like I am floating along in life. Having less purpose. I know I have responsibilities but the personal, willingful contributions I make just seem bleak and nonexistent. I see my home, my husband, my calling, my kids and their behavior, I look into the mirror... It all seems neglected.
I know I cannot help it anymore when my body is not able to do the tasks before me. This is where I struggle to remember that I have to let go. To put me first and relax. Tomorrow is another day. Once I am having a good moment then I try to work in overdrive to make good use of the energy. That almost always backfires and I'm down again.
It's hard to change your thinking of over 30 years of knowing what you are capable of. Learning new tricks... Diet, exercise, supplements, sleep, rest... How much of each is needed and planing future events accordingly. The spoon theory is no joke for me now! It's my bible of living the Lyme life. Borrowing and saving strength, energy and hoping your mind will be on task at the same time you physically have prepared for the moment.
The RA is not fun at all this winter. Places I didn't know could hurt me so much are surfacing each day. New combinations of pain. Sharp and shocking to dull and endless. It's more annoying than anything. You build up a tolerance for it and keep pushing through no matter how much it hurts. My jaw muscles hurt a lot from clenching at the pain. It used to be from smiling. I always had a smile on my face. I try hard to keep that part of my personality going. Smiling helps to bring a positive attitude and with Lyme I need it more than anything!
My kids have seen me up and around a lot more this last month. You would think it would have been a happy note. Ok, it has! I just don't think they are happy about mommy trying to bring about order and structure in the home again. They are fighting it with a vengeance. I can understand from their perspective and I need to remember that I need to spend quality time with them.... After their rooms are cleaned!!
I have set up a new system in our home for behavior and the old chore charts are starting again. Work and responsibility are my goals right now, hopefully it brings about some respect, humility, and maybe even some free time for all of us to go play more often. If I can just get my primary responsibilities in check I wouldn't feel so torn between them both! I feel absolutely horrible about managing my time between family and church. I am so bad at it. That's my personal goal this month. Working on time management, prioritizing and delegation in my new Lyme life.
Speaking of goals... I finally have my doctors appointment this Wednesday to discuss my polyp removal surgery on my sinuses. I'm apprehensive about it all. I know it needs to be done but I cannot even tell it's there. Researching my phantom left ear pain, which I now have again thanks to the colder weather, is how we discovered the polyps in the first place. I know the biopsy will show it's benign since its in my sinus, but I'm not looking forward to the pain from the surgery aftermath. 2 weeks. It's not that bad. I will only need to be on watch for 24 hours afterward and then I will just need assistance for the next few days. If my first week goes well I should be able to go off pain meds to see how I am doing.
My biggest concern with surgery is that my immune system could get shocked. I've researched a little about it and don't feel I know enough. You see, Lyme can multiply much faster with a weakened immune system. For now I am keeping the bacteria in check because I have attacked most of it and have helped to raise my immune system for better maintaining of my disease.
I guess it will be another learning experience! I hope to learn a lot more at Wednesday's appointment with my ENT. Hopefully my hubby can come, too. I would like that.
Thanks for being patient for another post. I don't know who all reads this. I'm not very entertaining and not much of a writer either! Just hoping to share my experiences for my own record and for the hope that someday it will help someone in their journey. So to that I say hang in there! No matter what you are going through it will pass. The trial will change and life must go on. I am not my disease and every day I am getting closer to finding me again. I just need to keep going... One moment at a time! Love you all!!
The evening was beautiful! The ceremony was amazing and I was very honored to be invited by our good friends to the United States Marine Corps Ball. Would you believe this is the only picture I have of us that night? I had to steal this from our friends, too.
We also had the honor to shake the hand of a retired 4 star General, Al Grey that evening... That was an honor! He gave a wonderful speech and it was very inspiring to listen to him talk. What a great man. Oh, I also stole this picture.... Here is the general at the cake cutting ceremony.
Such an inspiring man!!
I had a great week and was almost completely in tolerable pain levels from Thursday until tonight. I think the warmer weather helped a lot. I'm thankful for the break my body gave me that I was able to attend that evening with our friends. They are great company and have done so much for our family. Certain people are placed in our lives for different reasons... I know they were placed in ours for a very special reason. I am blessed to be their friends!
I will insert pic of dress here...
Bryan was looking especially nice that evening, too. He pulled out his suit jackets and found he fits into them again!! He has been working out while I have been filling in!! Haha! I have an appetite now and I am so happy to be able to taste food again. I've slowed down though. I have never weighed this much our whole marriage, minus pregnancies. It's not a lot, but I'm rather worried about not fitting into my clothes anymore. It's not like I can just go out and buy myself a new pair of pants! Slimming down is much less expensive. So I need to build myself back up to working out again. I'm getting a great workout doing chores around the house. Plus, I found out that warming up by the fireplace helps my joints a lot.
Anyhow, I got off subject. We had fun, it was a great break and the food was fab! Best of all was sharing it with good company! Happy Birthday Marine Corps!
I'm sitting here by my fireplace and am listening to the children play outside. I'm so blessed. Last night our churches youth group, (boys and girls ages 12 to 17,) and their leaders, held a service night at our home. I wish I had taken pictures of them.... It was too dark. These kids are so awesome! I mean it. They worked hard last night and were smiling and having fun at the same time.
My back yard needed a big trim down and clean up. They pulled weeds and old garden plants, trimmed grass and bushes; Winterized a few plants for regrowth next year; trimmed a tree down, (most of it died); and gathered trash, raked leaves and made us a beautiful fire pit pile for later in the week. They even blew out the rocks and cleared the path on the side of the home to the front yard.
Here is a few of my yard this morning.
This was covered in leaves and debris.
The trash pile in the old pool and the pit pile in the back.
Garden is cleared and ready to be worked.
I can get to my shed now!
The rocks are my bane... I would rather have grass that I can mow the leaves into.
I can get to my swing and not be kicking the massive leaf pile underneath!
This is a beautiful view... Especially knowing it will all be cleared up soon and I can plant some winter grass. I hope I have some seed left in the shed. I used to have grass... And I would always blow off the patios and power wash the sandstone off. I'm a stickler for a dirty floor and now that the yard is all dirt it's almost impossible to keep it up. Grass should help.
Tomorrow night we are going to have dinner outside over the pit. I'm too excited! It gets dark enough to start around 5:30 or so. Two years ago I hung these icicle lights and I loved it so much I left them up! It makes it fun and the kids have a bit more light to play by at night.
The icicles go almost all the way around.
The BBQ is our landlords also... Can you believe we hardly use it?
My kids and their toys... What's not showing is the slide climber they have. It all takes up so much room on the patio. But they still play with it. The kitchen to the left is their favorite.
I am happy! I really love the out doors. I love the sounds and smells... Well, North Las Vegas isn't the prettiest smelling with the pig farm near. We usually don't get the smell by our home. Just the traffic from the main road about a mile-ish away. We have great neighbors and lots of privacy here considering our houses are so close together. I used to have a swing at the old house. It folded down to a solid bed. It was awesome. Here our landlord left us an old two seater. It works since we couldn't bring mine from the old house.
Anyhow... My husband and I are invited to a military ball his weekend with our good friends. I had a dress purchased from Salvation Army a while back. It was plum and fit perfectly. Floor length, silver accents. Well, I tried it on today... I gained weight. Too much weight. By like 3 inches. This is the most I've ever weighed in my life minus pregnancy. So it hit the thrift stores. Tried on two and found a perfect fit. Just the color is not what I would pick first... But it is one of my favorite colors and it was $19.99. I can handle that splurge.
I'm calling it orange. It's not tangerine, peach, or ...? It's literally orange. Well, I will find out if I can pull it off when the pictures come back from Saturday! Haha! It won't be hard to find me. I'm sure I'll stand out. BAM! There's Melissa... The orange, autumn, pumpkin...
I also took my 4 year old spitfire out with me to the mall to look for a cover for the dress. In hindsight I should have just gone to David's Bridal... They have the ones I want for $9.99. Anyhow. My little lady wanted to play first so I took a break and let her have at it. She was shy at first which was funny... She is NOT shy. Then she helped me look in every store possible that could have what I needed.
It was so nice to get out but was the dumbest idea... I walked way too much. WAY TOO MUCH. I got home and now I can barely move. Go me! I had a lot to do today but my dress predicament sort of took over. So I only accomplished one other thing... I cut my bangs.
My friend is going to kill me. It's ok, I'm sure she can retrim them next week when I go in to see her. She's pretty awesome, too. I have a lot of good friends who put up with my non socializing self lately! I have been trying to get out more. I think I'm doing pretty good! The cold weather stinks for my RA but I am managing.
Well, now I'm rambling... It's pretty nice to not talk of Lyme all of the time. I'll post pics from Saturday's ball! Have a great weekend!!!
I did it! I finished painting my sons room!! I just need to tack up the thin trim between the two colors and place the window trim. Then it's curtains, closet doors, setting up the shelves, and the task of separating the boys toys.
The picture looks a bit yellow because of the bulb. I prefer the natural white light or day light...
Oh, this picture was my inspiration for his room. He has biplanes on his bedding in these colors.
LJ loves it. I can't wait to set it all up. The coolest thing about this room is everything was already in our garage. We had bright red and medium blue paints... We lightened the blue with another white we had and added a dark brown to the red to make it deeper. We didn't have green so we are glad the brown worked. The tape, brushes and trim were also from our previous stash. It was painful to paint but felt good to be doing something.
I used the fan in the window again today and it brought the temperature down quite a bit. So my body literally froze up a lot! I find I sleep better with a heating pad under me at the lowest setting. It feels SO good! Well, good night ya'll. There is more work to be done tomorrow...!
Sundays are my favorite. It's the only day I don't feel guilty for resting. It's one commandment that I take seriously... And on the 7th day God rested..... It gives me time to ponder and reevaluate my previous week. I can plan my upcoming days with clarity and put things back into perspective.
Today was rough for me. I have inflamation and arthritis horribly... Not sure if it's from Lyme arthritis mixed with the cold weather or from accidentally eating gluten yesterday and my body is inflamed from it. Either way it hurts.
My ribs, hips, elbows, wrists, ankles, spine, hip joints, neck, knees, oh, I could go on.... It all hurts so bad. I have been on the edge of crying all day. But instead of lying in bed I forced myself up. Put my hair up in a ponytail and went off to church. ( I hate when I don't do my hair for church. I like to look nice and put together so it just bugs me to wear it up like that.)
I have this coping breathing thing I do which is pretty much a concentrated sturdy breath that helps me from crying or moaning out loud. I constantly stretch my joints out looking for relief from the stiffness but it just seems to make it more sore. I listen to my nature soundscapes and try not to focus on the pain.
I am trying to plan an adventure to get me out of my recently created comfort zone. I know whatever it is will be putting me down and out for a while but I will just plan for it. Line up sitters and premake the meals. Pick an open time on my schedule... Haha... And just go for it.
I love a lot of things but don't know where to start. Hiking, swimming, biking, Zumba, or maybe a game of volleyball, softball or something of the sort. Just to show Lyme who's boss. I know it will show me later, (ha,) but I am so tired of not doing the things I love. Even the simple things. Right now I'm working on my sons room... One more color and it's done. Just trying to find a day to do it with a recovery day after.
I had a thought today that I shared with my hubby, on how my friends are like pain pills. They help alleviate the pain, distract from the moment and get me though the toughest spots. Seriously, just like my pain pills I couldn't get through this with out them. I don't take my pills much so that's where I need my friends. (And yes, my family are my friends, too.)
It really hit me the other day when a good friend of mine stopped by with her husband and visited us. I was almost completely distracted from my pain and discomfort! I know how important it is to visit the sick and grieving but that night I experienced a reminder of why it is so important.
Since I can remember I have dealt with severe depression. I feel I have it finally under control... Even through all the trials in my life right now. But you never know. That night I was super depressed about not being able to go to church again. I felt I had let so many down. I didn't even pull myself back into consciousness until church was almost over. So I was a no show. But my friend visited me that night and I felt better about my circumstance and knew I was still loved through it all.
In my life I have known many people to come out of the woodworks about depression and it really is a common thing. For some reason people just don't like to talk about it. It appears to be a sign of weakness or incompetence. I don't like to bring it up but when I feel the spirit prompt me to I certainly do. It can feel like a lonely world out there and any illness, including mentally, can make it feel a hundred times lonelier.
It's so important to have friends. It's so important to have your life in tune with the spirit to be able to hear the promptings of the spirit and more importantly to act upon them without doubt or question. Our Heavenly Father has not left us alone. He is here and we are his instruments in the miracles and blessings he pours out unto us. But how can we be if we don't act. Our lives should be full of service and love... We may live busy lives being swept away with things we feel are important to us... In the bigger scheme of things it's our relationships with others and showing them unconditional love inspite of our differences and opinions.
You may never know how much your acts of kindness will play out in the lives of others.... But they do play a role. It does matter. So when you are feeling down or are going through a tough time... Get up and serve. It may be one less "pain pill" they will have to take because of you.
I feel like I've had a lot of demons to face lately. This last year has been one big emotional roller coaster ride for me.
It started with getting sick with a horrible flu. Down for days and hating the havoc on your body. Canceling last minute because you can't get out of bed. Having your family eat cold cereal and dreading homework time. You take the forced break, which isn't really a break, nonetheless you catch up on shows, watch movies you haven't seen or love, maybe do a marathon. I believe I finished a book, started a new novel and caught up on much needed sleep.
Then it was being sick for longer than a month. Talk about annoying. You feel like you miss out on so much. Everything gets behind. The house is a mess, children are running wild and homework is barely kept up. Children are now eating quick fixin meals and scooping Nutella while mom is in bed. Chores are put on hold and kids dance around toy piles as if they are bonfires of joy from not having to pick them up for now. Your husband starts to feel the stress of taking on extra at home... That is if he is home and not traveling.
Then you stay sick for the holidays. That's right. December is a busy month... There is the attending plays, parties, school performances, award ceremonies, taking children to their holiday activities. Oh, let's not forget making and delivering holiday goodies to schools, friends and neighbors or having to shop for Christmas lists and birthdays. Then there is visiting the sick, helping those in need at this time of year, calling others to connect during this busy time of year so we can have a moment to cheer each other on. Don't forget decorating the home, wrapping presents, planning events and entertaining children on a dreaded two week break... ( ok, for me that is not a fair statement. I enjoy my kids home... Just not when I'm sick!) Imagine all this and tons more I forgot to mention and your are still sick. Even worse x10. You just can't do it. At all. What you do try to accomplish you barely succeed and mostly because someone else did it for you. You show up late to everything, come bundled up and wearing earmuffs to everything because the cold is too much for your ears. Can't see very well, everything is so bright and you hiss when your sunglasses have to come off. Holding a thought, participating in planning or having any contribution to conversations is horribly skewed by massive migraines and horrible foggy thinking. Your entire body aches and it's NOT the flu. You're not contagious and life must go on so you trudge through hoping no one will judge.
Then the holidays pass and there is peace. Kids are back in school, things slow down. But not when you are sick. You still have a kid on vacationed, holiday damaged, let's put away the decorations and plan a new year month to go through....and you are sick. So much pain that you beg the doctor for pain meds. You give in and take them because no one knows why you are still sick and in pain. The pain meds help. Emotionally they help a lot. Having the edge filed down makes impact not as painful... But the pierce is still there. You sleep.... For days, weeks, all of a sudden the month is gone. Time to get off the pills.
February, the lovers month. Imagine my husbands stress level by now. I still can't. I don't think I ever will. Lucky me gets to lay in bed and rest while others take over for me. The pain is so intense you start calling it manic pain. It seriously drives you mad. You yell at your kids, you yell at your husband, you yell at yourself. You yell at the dirty laundry and the dishes with dried food. You cry. You cry after every bout of yelling because it's not you and you can't stand it. You don't like what you are turning into. This is the month I got the first call... It's Lyme, let's send you to a specialist.... Seriously the very next day I got the comment, "oh, I know someone who has died from Lyme disease." Thanks, that helps...
The next month rolls around and you are given a slight break from the pain by a weird anomaly that is quite a miracle! Doctors office calls and tells you based on results it's not Lyme. Not enough antibodies showing up. Great, but not great. Thank goodness it's not Lyme. That would be horrible! Time for tertiary care, you know as in Mayo Clinic or UCLA. Still sick still frustrated not knowing what happened to me that shoved me to the ground and has kept me there just taunting me with pain... Every... Single... Day.
Now it's getting ridiculously absurd. I am quite useless in my mind to my family, friends and church calling. I seek other doctors for second opinions with everyone of them wishing they could figure it out and help me in someway. They see the desperation and despair. They hear my short story and all recommended Mayo. I call and the wait is THREE months away. I am about to lose it. I emotionally cannot deal with it another day and every doctor visit is weeks in between. Now I have to wait longer? I did lose complete emotional control for a few days. I was begging and pleading with the Lord to help me find a diagnosis. So when another doctor asked why I was not seeing the infectious disease doctor I was recommended to I laugh hysterically. You mean the one who's assistant told me the relayed info that I didn't have Lyme and my case wouldn't be seen? Yeah, that one.... I am now questioning him... He says you have Lyme. I panic. WHAT? I thought I was safe from that.... Well, then I decide to get the opinion of two Drs. But MORE waiting.
Months have gone by and finally a confirmation of Lyme. I'm over it now and just want the fix. Treatments properly done are way too expensive for an average family. My heart sinks. At least I can try to treat the disease here locally and be on the road to good health. I feel uplifted. Hopeful. Most of all relieved that this will all be coming to an end.
Treatments were rough the first two months, I'm not going to lie. But I had things covered. Meals, rides, donations... I had delegated everything. I focused on myself getting better. When the third month came around I lost a lot of support. Mostly my fault... I completely underestimated the second part of treatments.
This is where I find it all became more and more difficult to keep my hope up. Frustration set in because I wasn't getting better. What I had feared with the "band-aid" treatments was coming to life. I wasn't getting better. I was out of bed mostly, but still dealing with total body pain, insomnia, brain fog, heart problems, nerve issues and just the most debilitating fatigue you can imagine. I start to get angry again. Short tempered and pleading for relief.
I still cannot adjust to this new me. I feel sometimes it won't ever get any better than this. If I go anywhere, do anything, besides rest... I am down for days. Total pain and bitter from the consequences of trying to be normal.
I accept this is my trial. I accept me. I will not accept this disease. I can't give in to believe that this is as good as it is going to get. Our marriage is fighting it. Our kids are fighting it. Our families are fighting it. Our deerest friends are fighting it. Even people we don't even know are fighting it. Yet here I am wanting to quit. It sucks. It sucks so bad, (and I hate that word.) I am always putting on a smile, a show, a facade of normalcy and it sucks. Inside I am falling apart. I can't bare it anymore. I ask God to take it from me... To give me some hope. To give me a break from the pain. From the crashing for days afterwards. From the feeling of incompetence and inadequacy. I want to step outside my body for just a minute to remember what it feels like to be normal again. To not have the desire to quit everything. (Nothing suicidial.... My TWO "happy" pills take that from me at least.)
I spend many hours in anger from the pain. It is maddening. No relief. None. Someday's are better than others, yes, this is true. But not what I thought it would be. The part that gets me the most is knowing what this bacteria is doing to me... And what it is causing my body to do. It is an autoimmune disease. The Lyme bacteria doesn't want to harm its host... No, I'm keeping it alive. However my immune system cannot reach to where the bacteria spirals itself into. Nerves, muscle, bones, cells.... My body knows it's there and attacks it... But it's hiding. So in the proces my body attacks itself over and over with out end. This is where my symptoms come from and where my frustration lies. My already damaged immune system will slowly destroy my body until it gets every last one.
Having this knowledge is good and bad. I try to overcome it thinking it's all in my head. This holiday weekend has proved one thing to me. It's not all in my head. (Well, technically it's all over my body, but you know what I mean.) I had a boost of hope and perseverance and I took it head on! I gave my self rest days, made it easy for me, and didn't do a whole lot. It didn't matter. I still did something. Yesterday was my eye opener. A very frustrating eye opener. I need to get this figured out. I'm not who I was before.
I need to raise the money. I need to try a better chance for me and my family. I have to.
In the mean time, I need to keep holding on. Taking it one day at a time. Letting myself cry and not holding it all in so much. Being strong all the time is actually making me weak. I need to get rid of the anger towards this disease. I need to move forward and live life to its fullest. I know this is a bit "corny" but our locally spawned band that hit fame big has a few songs that keep me going. One is my ring tone on my phone. One helps me release my demons and move past the pain. Being a person of faith, believing in Jesus Christ, I know I'm not alone in this. He has felt everything I have experienced and more.
In the end it is comforting to know that I someday will be free from all this... Especially when a cure is yet to be found. So many claim it and it's just not possible. I have lots of other avenues to try from the so called, "I'm cured from Lyme disease". But not one of them yet have been without a product behind them begging to be purchased. Fundraising brings those people out. It's a fact of fundraising life!
I have another day ahead of me now and not a wink of sleep. I'm sure later I will crash again... Just not on my family's time schedule. So is life.... For now.
Until then, here is to overcoming the demons my disease has created in my life and to being who I was meant to be. Drowning myself in service helps.... Just not with the house if you happen to stop by, (just keep that in mind!)
Yesterday I woke up in a great mood. I am so tired of all the pain, discomfort, blah, blah, blah... That I lost my mind pretty much! I climbed into Emma's bed around 6am and was silly with her... Then everything else was hilarious from there on. We all laughed and giggled until it was time to go. After the boys went to school I hung out with Grace and she looked tired... She asked me to go with her to lay down in my bed. I didn't want to but she was so pathetically cute and I gave in.
I passed out until about 1:30 and by then the kiddos were starting to come back home. (Not much time to get things done!) But the kids helped me prep a room to paint. We created our own paint colors from what we already had. The room is now prepped, primed, and ready to go!
It's all for my oldest boy. He is almost 10 and his little siblings get in his stuff all the time. They are 6 and 4. He is always complaining of cleaning up their messes.... So I sat my 4 year old down and asked her if she would like a bigger room. She was ready to go with it and it was a good thing, too. Little by little we have worked to accomplish this. When I do big changes like this in our home its always up to me to do it ALL. If its my idea, I have to do it. I normally don't mind since it's something I love to do. I involved the kids this time since I can't do too much at once.
It's turning out to be fun... Well, not with the boy who is getting the room. He is a whiner and I'm trying to break him of it. Giving him his own room pretty much solves a problem for me as before I had to send him to his room that was shared by his younger brother. This meant the younger one couldn't go near his room or bed. (I know, I should ground him somewhere else... But have you any other ideas? I need them!) For now I am putting him in his own room so I can shut the door and not hear it anymore!
Actually, the real reason is because he has been very stressed lately and when I pull him aside to talk to him about his behavior it always has a root cause of his little brother picking on him. Now you have to understand these two. Close in age, one an introvert the other an extrovert. Actually my oldest son is an introvert like mommy and daddy and the other 3 are from another planet of extroverts that we are unaware of! So I understand when he says he needs his space from his hyper, in-your-face, I'm going to bug you until you play with me, brother of his. I get it buddy.... I need the space, too!
So this has been my adventure lately.... Putting off everything else I cannot keep up with, trying to accomplish something that used to be a normal project for me, while helping solve my sons problems... (That are so disruptive to the peace in our home.)
Whew! Typing about it is crazy enough! Oh, well. Plus, I want to do what I used to do and more.... I will just need more naps and breaks in between. Having Lyme makes me want to show it who's boss and not let it take anything more from me. I am so determined now its not even funny... Well, this morning I thought it was! Just ask my hubby who was trying to sleep in while I loudly laughed with the kids in our bed!! Ahh, good times, good times!
Thanks everyone for their support and love. It has helped bridge the times where pulling through seemed impossible. I cannot express enough how much I appreciate you! Especially for my readers! I don't know who you all are, but thanks for going on this journey with me! Love you all and may God bless you always!!
One year ago today, on October 25, 2013, my life changed forever......
In a recent interview for the company Just Perfect, I had to create a script or list for our families first video. I thought since I don't have much energy to make a one year anniversary post, I thought adding pictures to the interview would be suffice. (Yes, I added a bit!)
Thanks for being a dedicated follower of my blog. A bigger thanks to everyone who has helped, donated, called, shared, prayed, checked in, babysat, cleaned, bought groceries, cooked meals, donated food, gave us a night out, said words of encouragement and loved our family during this last year.
I know I could NOT have made it with out you. I love you ALL!!!
~~~~~~~~~~
Hi my name is
Melissa Severance.
I was born and
raised in Las Vegas, NV.
I went to high
school as the first freshman class to start at the new Las Vegas High School.
After High School I
worked my way up from an entry level position at a large bank to almost
becoming manager of an entire operations department at only 23. I worked with the company doing Six Sigma and
Kaizan and I loved every minute of it. I
had found my passion.
I then met my
husband, married and soon after had my daughter and decided that staying home with
her was my new passion. We now have 4
beautiful, amazing, and silly children.
Our family was
always busy and we owned our own company having our young ones working by our
side. We now own another company, and
hope that it may grow, too someday. For
now daddy works at a family fun center.
We all, that’s right ALL of us, help daddy at work doing random things
in trade for some fun time on the trampolines or playing laser tag. We love to travel, hike, camp, go to the
beach and absolutely love going to the lake with our friends on their
boat.
Before Lyme
Trying new things
Hiking in new places (Mammoth Cave)
Getting dirty with the kids
In the fun
Conquering with the kids
Teaching new traditions
Adventuring to new places
Marshmallow roasting 101
Softball with friends
Midlife crisis convertible (wish!)
Spinning sail boats
Selfies with my kids
Favorite place with my favorite person
Super Summer Theater with my girl
Dress up days
Silly is a must
Animal lover
Playing tag
Photo bombing
Look-a-like days
Pushing too much
Being blown away
Memories in motion
Dancing in the rain
13 mile walks to the temple
Brick House.... do I need to explain??!!
How did
you find out you had Lyme disease?
By accident! I had been very sick for months. I was in a store one day and received a call
that my test results came back positive for Lyme. I had a doctor that finally took interest in
my well being and was about to send me to the Mayo Clinic in Scottsdale, AZ
until these surprising results came in.
THE DAY IT ALL CHANGED
Ready to camp!
What was I doing???
The beautiful evening
Our family tent
Walking the line
A day with friends
One in a million... or a hundred or so.
What is Lyme disease?
Lyme disease is a spirochete bacteria, which means it is spiral or cork screw, and goes by the name borrella burgderfori. It most commonly is transmitted by the black-legged deer tick. A majority of the victims, including humans, are animals, dogs, rodents, reptiles and birds… The list goes on. It is found in all 50 states and on every continent except Antarctica.
Additionally, studies have revealed that Lyme disease can also be passed through the placenta of a pregnant woman to her unborn fetus, therefore allowing Lyme to be a gestational disease. DNA of the bacteria has been found in breast milk, as well as suspected in cases of sexual transmission, but research on these two potential means of transmission is still pending.
When someone is bitten by the tick it is usually in its nymph form which is about the size of a poppy seed. Transmission takes 12 or more hours as once the tick is done feeding it puts back anything it doesn’t need. In this process is where the bacteria are transferred. %50 of people will later see the bulls-eye rash that accompanies a bite.
When detected in its early stage, Lyme disease is treatable with an appropriate course of antibiotic therapy. Some develop flu-like symptoms a week or so after becoming infected. If undetected and untreated, the bacteria replicates and the disease progresses into its late stages, becoming chronic. However, many people have no symptoms but can develop Lyme symptoms months, years or decades later.
The spirochete bacterium screws itself into the body’s cells meanwhile releasing toxins that the body naturally fights off. When it cannot reach the bacteria it continues to attack the cells surrounding the toxins causing it to become an autoimmune disease. The body begins to attack itself.
Treatment for Chronic Lyme disease is prolonged and complex. Patients often require years of intensive conventional and alternative therapies to fight the infection, recover immune function, and gain strength.
Lyme is not the only thing that can be transferred. Many other co-infections such as Babesia and Bartonella come along with the tick bite and can be worse than Lyme itself. There are also secondary infections that with a normal immune system could be fought off without the host even knowing of its existence. Any one of these alone can have debilitating symptoms and a combination can only make matters worse and harder to treat.
The Lyme spirochete bacteria is hard to detect and hard to kill. Lyme disease is growing at epidemic proportions in the United States. The medical community is divided over the diagnosis and treatment guidelines. Health insurance often doesn't cover the treatment for Chronic Lyme disease.
It is called the great imitator; looking like many other health problems (Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Bells Palsy, ALS, ADD, MS and Lupus).
Common Symptoms include: fatigue, neck stiffness or pain, jaw discomfort, muscle pain, joint aches like arthritis- typically in the knees, swollen glands, memory loss, cognitive confusion, vision problems, digestive issues, headaches and fainting, heart problems and even death…. I’m starting to sound like those medicine commercials!!
What has
Lyme disease done to you?
It has taken me
away from my family and friends. I have
multiple symptoms and have been hospitalized from some of them. At times I am in such severe pain that even
the best pain pills aren’t working anymore.
I am nauseous and bed ridden for many days on end. I miss school award ceremonies, church
activities, birthdays and my children have missed out on SO much from mom being
sick. Even the triple birthday party
that we throw at the end of March every year for our kids that share birthdays within 3
days apart had to be canceled. We have tried to travel with the kids but it
proves to be too strenuous for me so we just stay home. Even going to the park is difficult for too
long.
My husband had to quit traveling to care for
me and the kids when I couldn’t. The past
year has been financially hard mostly because Bryan could not work as much as was
needed to pay the bills. Everything is
behind or in shut off status. Our car is
almost paid for and we are struggling to keep it. We have support from friends and family and have
been very grateful… It has kept us a
float thus far. Keeping our heads above
water… That is what we have been doing
for the past year.
I make voice notes all the time so I can remember things... This one is about what else in our lives has been effected.
LYME CHANGED ALL THAT
In bed all the time
Otter pops for breakfast, lunch, and dinner
Too tired to swim
LOTS of blood work
Lots of tests run
Visitors made it better
Bunny loves
Too sick to get up
Other diagnosis... put on the back burner
Sundays were exhausting
Laying in bed... again
Family still loves me... even my leg... that they were hugging
Comforting me when sick
Watching others
kids miss me being active
starting to become part of the couch
watching others freedom
Still loves me
Family visiting me in bed
Noise cancelling headphones... that is all.
Started "band-aid" treatments
New adventures?
Picking up kids at school
ALL BECAUSE OF WHAT YOU CARRY
What
have you had to change in your life?
All I can think of
is: WHO moved our cheese? Oh, it was
Lyme. I already have Celiac Disease
which is another autoimmune disease so starting the forever gluten free diet
was easy… I’m already doing it. I also have to eliminate diary. I love cheese so this was hard. While on antibiotics I have to eliminate
sugar as well so as to not feed the bad bacteria. I have to detox every day and take multiple
supplements as well as more prescriptions to aid with the symptoms of the
antibiotics.
I no longer have
the energy to do the things I once used to do.
I was a busy body always trying to make our home a better place for my
children, playing with them and helping others as much as I could. Now I am the one who needs the help. What used to take me 30 minutes now takes
hours… Sometimes days if I have memory
or concentration issues. I cannot do
anything strenuous or I will pay for it for days afterward.
THE SPOON THEORY
Click on the link below for a perfect example of what I deal with now because of Lyme.
I've had many ask why treatments are so important. Besides to avoid having all the symptoms of Lyme and to prevent my body from further damage from this auto-immune disease.... Well... I don't want to die from it. Plain and simple. When someone says they have cancer they have a choice to make based on the stage it is on. The same goes for Lyme.
I am in the beginning stages of Chronic Lyme... Which is a final and irreversible stage. Doctors say this because of the Cardiac and CNS damage that has already been done. Some of it can and will repair itself on its own. Most of it won't. Getting treatments will push the bacteria back, help my immune system recover and will stop further damage to my body. The reason for the high cost is weighed in on costs in different scenarios.
1. Living nearer to a doctor is my first pick. This means moving out of state. I will need a doctor that specializes in Lyme and the recovery of the whole body if I want to keep on top of this. The doctors here are great but they are not able to treat the whole disease. This is not something we can do right now. It would be the cheapest and most effective way but not quite feasible.
2. Going to Envita one trip for 8 weeks, (every 5 to 10 years or more) Staying with family and friends, high cost but not every year.
3. Traveling every week to a doctor out of state. Staying with family and friends. Cost of travel every time I need to see the doctor. Annually it may vary but during treatments it could be for months. Oh, and don't forget out of state doctor costs.
4. Treat it on my own as most have to do in my current situation. Use Infectious Disease doctors and natural medicines and treatments to try to attack the bacteria during flares. This includes whatever is not covered by insurance, hospital visits and having the quality of life not return to a full life-style. Living in between the flares. For me I seem to not be out of a "flare" yet from treatments. (Still have to follow up with the doctor in town.)
When Lyme is addressed early a tick bite is $400. If we wait until early Lyme disease, the cost increases over 4-fold to $1,700. By the time, we are dealing with late Lyme the cost is through the roof at over $21,000 and has been commonly reported to cost patients in the hundreds of thousands.
If no treatment is reached then the patient eventually withers away to nothing from the diseases it mimics and eventually passes away.
MY FUTURE WITH OUT TREATMENTS
Bad days more than good
Get to meet the next cute EMT or Firefighter!
Where everybody knows your name....
Keep me alive
New goals
New stats
New toys
New friends
Certificate of death.....
DUE TO: Lyme disease
DUE TO: Lyme disease
DUE TO: Lyme disease
(Am I subtle or what??!!)
Web
site for funds?
I have a web
site where you can donate to help us in our journey to better my life style in
managing this disease.
