This has been bothering me for quite some time now that people don’t understand this disease! I have been doing so good the last year and you may see me tomorrow and I can’t have a conversation with you! I have been so confused over everything and I know God and Rituxan have gotten me where I am today! I want to apologize if you run into me or see me drive by and I don’t wave! My mind is on my agenda and what I’m getting ready to Do next will take me much longer than it will take a normal person! I’m not trying to walk past you or not speak to you when I see you. I’m looking down to make sure my left leg moves when I need it to so I don’t fall! I’m standing straight up so I can keep my focus on you but I may not be able to respond the right way when you tell me something because I’m afraid I will say the wrong thing. Lately I have stuck my foot in my mouth more than ever and totally embarrassed myself by the questions I have asked people! I know I am blessed to be able to walk and do the things I do and I really want to get out and enjoy life a little more than I do but I never know when something from this disease is going to stop me! I have had the best girls month this month with some fabulous friends and I have enjoyed life to the fullest this last month! I have an issue with thinking that people don’t want to be around me or they don’t call because they don’t know what to say since my days are so unpredictable but while I am able to do what I want, nothing is going to stop me from fighting this disease to keep going! I have battled a few things the last month and I want to get them fixed but it’s not going to be possible so I’ll deal with it the best way I can! I have a new hobby now with wood burning and I’m going to start working on Christmas ornaments made from wood chips and I hope to be able to sale them! I’m going to continue this journey as it will allow me and I just wanted to say HI to the ones that have followed me since my first blog and I think this is only my fifth one in a year. I live a pretty boring life but it’s getting ready to get exciting for me with fall coming and I won’t have to suffer through the heat any more! Happy fall y’all and I hope everyone had a great Labor Day weekend
I Had an appointment Thursday with a new cardiologist and somehow we got on the subject of other autoimmune diseases and now I am having test done on August 8th for psoriatic and rheumatoid arthritis along with peripheral vascular disease and heart disease! I never thought my life would be like this when I was 40 years old. I always heard the phrase “you age so gracefully and you still look 25”. If you have MS , MOST PEOPLE are always told “but, you look so good”. I absolutely despise that phrase because when you look at me,I’m not grimacing in pain,I’m smiling in pain since I’m not one to tell you how bad I feel,on any given day unless you are one of my parents or a very close friend. Now, I’m not saying I don’t love the compliments because I do,please don’t think I’m telling you not to tell me that,everyone loves a compliment but people with MS don’t like to hear those words and if they tell you they do ,they are lying. I don’t know one MSer that will tell you they want to hear those words.I just started having to tell my husband when I’m in pain just recently because of the new symptoms that won’t go away and are keeping me up all hours of the night and keeping me from walking ten feet! If you’ve ever broken a bone then you know what it feels like to have joint pain. My joint pain is in any place a bone is joined together,mostly in my spine,my cervical spine,wrist,ankles,fingers,toes and the worst is the elbows. As I’m writing this,I can’t help but wonder how long it will take me to finish since my fingers,wrists and elbows are killing me! I was told, a vey long time ago that autoimmune is caused by the toxins in the air from the pig farms and chicken houses and I can’t help but wonder if it came from where I hung out as a kid. My sisters never went to my neighbors house to collect eggs or feed the farm animals or ride horses and they definitely would not think about climbing in areas where there was poop from other animals! I love animals,I always have and I always will but I still have to wonder if my birds(that poop all the time) in their cages are what’s making me sicker since I’m the one that’s always cleaning up after them and always spending the most time with them. Is it the toxins or is it in my DNA to have all the health problems I keep getting diagnosed with? I refuse to claim them but they sure are getting the best of me on these hot days and we haven’t even really started the summer months yet. I’m not counting my chickens before they hatch but you know when you have that gut feeling that something is wrong? Other than my MS,I’m always questioning myself is this the MS causing ALL OF THIS PAIN? I tried going in Lowe’s today just to have some blinds cut and they take forever on any given day,no matter what time of the day or what day of the week it is. Normally,I’ll get a motorized scooter but there weren’t any available so I told myself to suck it up,you can rest when you get home! If this is MS fatigue, then I never really had MS fatigue until recently. I am in a group on Facebook with people that take the same infusion I take every four months and everyone,I mean everyone,told me to find a new neurologist after the HICCUP visit so I’ll be working on that next week! Until then, if you’re my friend or a loved one, come get me once in awhile,it’s safer on the road that way! I won’t ask,you’ll just have to show up! Y’all have a good rest of the weekend and I’m sure I’ll be writing a lot more since I can’t take the pain of walking and I’m better off sitting than standing! Thanks for reading my blog and I’d love to hear what you think!
So, I haven’t written anything in awhile because I have been doing so well, I haven’t had time to sit down and write anything about this horrific,unpredictable disease! With that being said, I feel like I must have been in a relapse for almost a year but could never get my neurologist to confirm it and I really would like some feedback from the ones with MS that follow my blog. Even if you don’t have MS you can probably agree with me on this issue.
This morning, I had a 6 month follow up with my neurologist and back in January of this year ,all the way back to March of last year, I was not really able to drive or even do anything that required multitasking, much less thinking about what I’m doing at any given moment and have had to ask for so much help for the last year! I have been confused,frustrated over every little thing and my OCD has been in overdrive and I have driven Mike crazy by asking so many questions over issues that really didn’t matter but they mattered to me because I didn’t understand what was going on at the time! Imagine living with someone that asks a million questions in the car about things that don’t really matter. For example, “ Did I say that the wrong way or What did I do wrong?” Comes out of my mouth a million times a day.i am always questioning what I have done or if I have already done it. While taking my medicine I had to literally stick my tongue out and take a picture of what was in my mouth to see what I had taken. I could not get up to see what I had taken because I was so weak at the time. This all went on for a year and I ended up buying a 1500.00 motorized scooter to get around. The doctors kept saying my MS was stable every six months ,every time I went for the last 8 years. They would not listen to me,EVER! I would ask them,are you listening and they’d say yes. When we got in the car,I’d say, Mike, do you think he was listening? Of course , he’d reply,of course! They were not listening to a word I’ve said! You can have a relapse after 72 hours and for a whole year,they/he was not listening to me! After my very first disease modifying drug to slow the progression of the disease, I went from being paralyzed completely for 3 months and then 6 months later, I was learning to walk again! I even played golf for about a year after this. I was back to my old self! That lasted about 6 months and I started reacting to the drug so I had to be off that one for a month then start the next one. This went on for 6 1/2 years until 2019 when I found Rituxan! It has been a miracle drug but all of my old symptoms are back at different times. I never ever know when one is going to hit me! I have choked at least 10 times in the last year, I have fallen more than ever! I have horrible short term memory loss and I have lost all sensations in places where I don’t want to admit! Most of these that I mentioned happened in the beginning but maybe 5 of them are new! Every day ,I do something that makes Mike think I need a caregiver at home. Today, I drove to the Berry Patch with My grandchild and another van parked beside mine,that was the same color and ALL. and when I say ALL, it had a car seat on the drivers passenger side, the same side my grandchild sits on. I start to put her in the car and she says,Mimi,this is not your car!!! I am so glad those people didn’t see us do that because they would have thought I was crazy! We left and came home and my grandchild tells her Mom what happened. You know you can’t say anything in front of a four year old. It WILL get repeated! My daughter asked if I was ok and I said ,no more than usual. She told me I need to find a new neurologist by next week! There again, I questioned myself and when she said that,I knew he had not been listening to me for the past year! I know I had a relapse when I’ve been sitting at home, waiting on someone to take me to the grocery store or to the doctor or to the shopping center. You name it, I needed a ride! I despise asking anyone to do anything for me and it’s because I have been independent all my life and me going on and off dependency is for the birds! I know people think I make this crap up! It is so damn unpredictable that I can’t tell you if I can meet you for lunch,an hour before it’s time to go! All I can do is pray that my days are as normal as they are now and that it stays that way and doesn’t get any worse. I say that because if my MRI is always stable,how do they know I’m not progressing? They sure don’t ask to see me walk! They sure don’t ask to see me walk up steps,or down steps or around steps. They do not even know if I can walk or move myself to and from the scooter! They don’t even ask!!! So, today I had a virtual video appointment with my new cardiologist and then my neurologist! The cardiologist explained everything and did not leave me with ANY/NOT ANY QUESTIONS IN MY HEAD. I wrote down what he said and then waited on the neurologist to call. It was actually one of his P.A.’s. I asked him how does he or the doctor know that I haven’t been relapsing for the last year when they never even asked me to walk or even stand up? I asked him , why would they not give me something to help me feel better or try to control my pain?Did they think it wouldn’t work for some reason? Did they know it wouldn’t work? Or were they just never listening to begin with? They ordered PT a year ago and I’ve called four times in 6 months with no results because I speak to the same nurse each time and they know me so they don’t listen! Please tell me how I can make this stuff up? The craziest thing ever,to me, is not being able to lift my legs when I think I did! I feel like I took a step and then I’m laying in someone’s floor or against the wall. Please tell me how you explain that to someone that doesn’t know you? They will swear you are drunk or high! They make actual MS SHIRTS that say,”I’m not drunk,I have MS”. Do you think those neurologist even know how we really feel? Not unless they have MS themselves and that’s few and far between! What about saying you don’t have bladder problems or bowel problems and the next day you pee in the floor in the kitchen. You wait a few days and call the office and then you feel like you are using what they asked you about as a reason to call but it actually just started happening a few days after you got home from seeing him so you know they don’t believe you! I have had things come and go over the last 8 years and some things have come and never went away! If there is not one identical case in the entire world please tell me how they know if you have relapsed or not? Have I had such horrible neurologist that I am that uneducated about the disease or am I too educated by the neurologist at the Cleveland clinic that I’m always chatting with on YouTube? Do I read about it too much or do I not read enough? No! I have many friends with the same type of MS that I have that know so much more than I do! Is this coincidental or am I just finding horrible neurologist? I do know of 3 that I thought were “quacks” and one of them almost caused me to lose total disability with an incurable disease! I am not that uneducated about my disease! I read EVERY DAY about it! So, when the P.A answered my question of “ have I been relapsing for a year? “ with no, Mrs. Maree it was just a hiccup! I flew off the handle and asked him what a hiccup was ? His answer again was “a hiccup!” I told him to have a nice day and I hung up and called the office right back and had to leave a message with the office manager because it was after 4 p.m. So, what do you all think a hiccup is ? Can’t wait to hear your answers! Stay tuned to the conclusion of the hiccups until a day or two! Have a wonderful weekend!
I never know what to blog about or when to blog but tonight it hit me hard that I am actually sitting here on my bed reading and writing and not lying in a hospital bed somewhere. I decided when I got up this morning that I was going to make a road trip all by myself, no matter how I felt, good or bad,dizzy or not,here I come! My plan was to go to Michaels craft store to pick up some wood to use for some projects I’d like to burn (pyrography). As I was driving, maybe ten minutes down the road I started questioning myself whether I was going in the right direction or should I attempt this alone and all those questions that go through your head like when your a new driver and have never taken a road trip before by yourself. I got confused when I got to southern pines and turned into the parking lot of Hobby Lobby realizing I went too far or didn’t go far enough down the road. I pulled over and called my friend and told her where I was a she pointed me in the right direction. I could have easily put it into my GPS but I was very confused when I looked at my phone and it said head North . Well, when you don’t know where you are and which way to turn, how was I supposed to know to turn left or right or go straight or turn around? Now, I can drive and stay between the lines and go the speed limit and know what all the street signs mean but when my GPS doesn’t have voice commands and I have to look at it while I’m driving then I’m in trouble!
I cannot tell you how many times I had to turn around and drive up and down a road until I saw something that looked familiar and then I pulled over and got my thoughts together and finally made it to the Burke outlet! I never made it to Michaels and that is probably a good thing since I totally changed out all my kitchen curtains and towels and changed both mantels decorations that have been there for five years and bought a few house warming gifts and baby gifts and birthday presents and really racked up on the clearance items by buying two orthopedic dog beds (I didn’t know dog beds were ever on clearance ) but both my dogs got new beds for $11.62 and they are nice enough for me to sleep in. These are really nice dog beds, not to mention, pillows(big pillows) to go on my couch and the birds even got toys for 87 cents and that is never to be found! . Please keep in mind I had a list of all the wood I wanted to pick up and all the different shapes and sizes I was going to get for these projects I wanted to start.
My mind was going in a million different directions going down the road. I could not figure out how to turn the air conditioner on so I thought it was broken and I was so upset I was ready to turn around and go home. I called my friend( Bless her heart) again and told her my AC went out and I was going home and she told me to roll the windows down and keep rolling, everything was probably fine and we’ll figure it out when I get to her house. My other intention this morning was to go drink coffee at Starbucks with her but I stopped at Dunkin Donuts and got an iced coffee with a double shot of caffeine because before I even got out of Rockingham I was sleepy again. I was really starting to wonder if I had narcolepsy. I have been falling asleep anywhere I am and even standing up in the shower, I have to sit down in my shower chair to keep from falling from being so sleepy all of a sudden, out of the blue, I think I could sleep in the kitchen sink at times,it gets that bad! This sleepy feeling that I’ve been getting, makes me HAVE to lie down, no matter where I am! I’ve been blaming it on the bronchitis and pneumonia and I hope that’s all it is.
So, while I’m driving down the road,I was probably in Aberdeen by this time( that is where my friend lives),I start getting sleepy again so I open the sun roof with all the windows down already and my hair is blowing in every direction and my phone rings. ( I have the App that won’t let you receive calls or text while the car is moving) . I didn’t know if you have your phone plugged into the charger it will ring and it will read my text out loud to me. This is how much I DONT drive my car more than ten miles, anywhere I go. My car isn’t new but it’s new to me and it’s got so many technical features on it,I’m not in the car long enough to figure them all out, much less learn to use them while riding in the passenger side. We just never go anywhere and boy did I learn a lot on a 45 minute drive there and back! The way MS works on the ones that have had it awhile and that are progressively getting worse, it really makes you doubt yourself and the people you are around. It makes you wonder what people think that are around you and if you really sound as dumb as you feel. I know I do and I also know that I say and do a lot of things that I normally would not have done prior to this disease.
I know by now you are probably wondering what am I trying to tell my readers? I am trying to tell you all that my mind and many other people with progressive MS do not know how to make decisions when our cognitive functions start dysfunctioning ,if that even makes sense. I truly do not know how I made it to my friends house and back home today. I do not remember getting in the car this morning and I don’t remember how I even got to the Burke outlet or to my friends house. She will tell you I was there and that I was fine, that I was just sleepy because I didn’t tell her I was confused, I just told her I couldn’t remember where Michaels was and she told me and then she text me her address so I could find her house. (I had never been to her house until today) Like I said, my husband and I never go anywhere and here lately when I do go somewhere its always with Sheila and she and I do not do well together when it comes to driving! We could make a movie and give everyone a pretty good laugh on how to take a road trip with two non essential females that could care less where we are going as long as we get there that day and and get home in one piece. we always have a good time together,no matter what the outcome.
When I was leaving her house,pulling out of the driveway, I couldn’t remember which way I came in. If my head wasn’t attached to my body I really would leave it somewhere and not be able to find it. I’m not always this confused every day but at least five days out of seven and that’s why I’m driving everyone crazy and that’s why I think I don’t have any friends or family that cares because I can’t remember the last time I talked to someone unless it’s my husband( he calls me almost every hour of the day) because I stay confused to remind me to do simple things that most people don’t think twice about but Mike knows me well enough, he knows the things that I forget about and even the things I can remember but he still reminds me to make sure all is well. These are the things that my friends don’t know about me that don’t talk to me on a regular basis since our lives are so chaotic right now and they just think I’m being aggravating. I really do not remember much of anything and I’m not the only one with MS that has dysfunctional cognitive issues so I’m hoping you will read the comments later on from the other ones that are as confused as I am on a daily basis,maybe they can help enlighten you on this subject. I am just thankful I am at home and in my bed and that Jesus took the wheel and brought me home safe and sound! Have a great rest of the week and thank you for reading my confusing blog that probably made no sense to anyone but my fellow MSers!
Life is just too short to not spend Mother’s Day with your mom! It’s one day out of the year. To me, there’s not enough excuses in the world to make up of why you can’t spend time with your mom! Your mom is the one who believed in you, encouraged you to do your best, was happy for you even if she wasn’t happy about the choice you made or choices you’ve made, she’s still your mother and she always will be! I know our kids grow up and move on with their lives and have new family members that have become a whole different meaning to having a mother or father! Now they have two of each but that doesn’t mean you forget about the one who gave birth to you or raised you! Being a step mom is hard and I’ve done my best but my best wasn’t good enough. My encouraging words didn’t mean anything but it made a difference with your job and the new families you have now! Everyone that knows my children will tell you how much they love them being a part of their family. My daughter in law has told me on several occasions how good my son is to her and how thoughtful he is and that he’s a wonderful husband and father. He’s also a wonderful son and it’s been the hardest thing in my life to let go and let God help me deal with the separation and the anxiety I felt when I realized he has a new family now and he has to put his wife first! I instilled this in him and I’m proud of the man he has become! I still have to say I miss my kids on Mother’s Day but I guess it’s a part of life! All I want is one more picture of my parents, my kids and my grandkids together before it’s too late! We’re not getting any younger and one day maybe it will happen! Life is just too short to put things off! If you think you want to Do something for someone no matter who it is, please go do it and don’t put it off another day, that day may never come! Love your mama while she is here and treasure the moments you have with her! If you have a daughter that is your best friend or a daughter in law that is your best friend, that is such a blessing in itself! My daughter is a wonderful mother, she’s not perfect but neither was I! We are closer now than we have ever been and I’m proud of the person she is today! My mom will always be my best friend and my biggest cheer leader!! Not to mention my mother in law that I’ve known for 30 years that just happened to end up being my mother in law last year! She’s always been a beautiful person and someone I could call on and to be able to have her as a mother in law now is definitely a blessing! I hope everyone has a wonderful Mother’s Day and many many more!
It has been 8 years today that I was thought to have Multiple Sclerosis. My husband began reminding me of the the things he went through while we were seeking answers to why I could no longer walk,talk,sit or do anything without assistance. He said he remembers the ambulance coming to pick me up from the closest hospital that has neurologist available. We had no choice but to go to this hospital after my children and my best friend discovered I may be having a stroke. The only thing i remember prior to this hospital visit was not being able to tie my shoes that morning and very odd things I was thinking were happening to me at work. I thought I could read a clock but I was not actually comprehending the time. I kept thinking people around me were touching my shoulder or my arm on the right side but it was actually me doing these things with my left hand and not realizing I couldn’t feel my arm moving at all. Then I got lost on the way home from work and called a friend to tell me how to get home. I think she ended up coming to get me in hamlet at the fairgrounds because that’s where I ended up. After my assessment in this particular hospital, I was admitted and two days later transferred to UNCCH . I was so scared of dying at that time because I didn’t know God and I knew I didn’t want to spend eternity in hell. A volunteer came into my room and explained he was taking me down a couple of long hallways and would I mind if he sang a few gospel songs to me while traveling these hallways. I told him I’d love to hear him sing to me that I felt maybe he could ease my mind. I’ll never ever forget this man singing to me. He sang, Thank you Lord for your blessings on me! I can cry writing this because I knew when he finished singing that I was going to be ok! I told him thank you and that he had to be an angel to come to my room and make me feel so much at ease all of a sudden. He said, “I’ll be praying for you and I will do my best to come visit you soon to see how you are doing.” I never saw that man again but when I got back to my room and the whole team of doctors came in to tell me the news, I had no idea that my life would be changed permanently.forever!
I was diagnosed April 5th and started extensive Physical and Occupational therapy to learn my activities of daily living all over again. I remember someone coming in my room trying to stimulate my nerves in my feet to see if he could stimulate them enough for me to get up and walk. This went on for days and I felt like I was drowning and so overwhelmed with how my life had changed so much over night. I didn’t know it was going to get better and then continue to get worse over the years. I have good and bad days and I really try so hard to make the best of the good days and when I do too much it lands me in the bed for days,even weeks at a time. I am learning every day new ways to cope and just recently within the last few months I have accepted my new normal and I thank God every morning when I wake up to be able to walk! Sometimes when my feet hit the floor in the morning, I will stand up and fall back on the bed and try it again. I know when I stand up in the morning if I should get back in bed or just do my best that day and rest when I need to. Almost every morning I am awakened by excruciating pain in every inch of my body. This is why I don’t blog every morning like I wanted to but I’ve also learned not to plan anything ahead of time. I can plan a few days ahead but never weeks or months because I may experience a pseudo relapse that only last a few days or an actual relapse that can last up to six months or longer and I’m back to 8 years ago using my walker, sometimes my wheelchair and always my scooter during these times. I have been known not to let this disease define me and fight back when it’s telling me to stop,slow down or go back to bed, you can’t do this today. I do it anyway and then there are so many consequences to face in the coming days and even weeks or months to recover just from a day’s adventure. One thing that really bothers me is when people say, “But you look so good, you would never know you were sick.” If you know me, I’ll never tell you how bad I am really feeling unless you ask. If you ask , I’ll tell you it’s just not a good day and if we had plans I’m really sorry I had to let you down. I have some really wonderful friends now that they totally get me and they are so wonderful to be around. Mike and I have some really great friends that we have made together since 2008 and they have always been there for us and have helped him out with me when I’m having difficulties. My parents have been Mikes saving grace and mine too! I still have many unanswered questions on a daily basis and I pray I will eventually know enough about this disease that I won’t have to question it daily. The things people can’t see when they are talking to me while we are both standing and conversing is how dizzy I am(even sitting,sometimes) and how hard it is for me to stand more than a few minutes. I will start shifting back and forth on each leg and Mike will know I need to sit down. Sometimes I think people think I’m being rude when I run into them in public and I can’t stand there and converse so I tell them I have to walk or sit if you want to talk for awhile and they’ll say they understand but continue to talk and if Mike is with me, he’ll say she needs to sit down let’s find a place to talk. We may find a place but usually they just say they will see us later because they don’t really know me like my family and friends do. These are only a couple of issues I deal with on a daily basis, I won’t go into great detail because it will bore you to death.Right now, this week, I have been doing pretty good but I still can’t drive. This is not bothering me but the ones that say we are having cabin fever or I can’t believe we can’t do this or that and it’s only been a week, I tell them it’s been 8 years for me and while you have this time to spend with your family, you really need to take advantage of it. You really never know when this could happen to you! Take this time to spend with loved ones if you can and thank God every day you are healthy and you don’t have these daily struggles. You are fortunate to be healthy and not handicapped. Enjoy every moment of life, you never know when it will be your last breath. God bless you all and thank you for reading my blog and following me!
I’m not sure if I’ll be able to explain this like I intend to but it’s worth a try because I really would like to get some feed back from this! In my earlier days before MS, I could join in most conversations even if I didn’t have a clue about the subject I could at least act like I knew a little. I, absolutely do not remember ever having so much trouble holding a conversation with people like I do today! Everything is over my head! My first sign of not understanding things was when I couldn’t count the money in my wallet back in 2012! I have never been the best at math but I always managed to get by! Some of the simplest conversations being held by my friends, my husband and I have been the hardest lately! I feel so ignorant now and I want to crawl in a hole when things start flowing over my head and I get lost in a conversation! I learned so much last night in a conversation my friends were discussing about farming and breeding animals and everything involved in farming. I really had no idea! I was so intrigued but I felt stupid for asking questions about it. No one made me feel stupid, they were all answering my questions but I was the only one asking. I ask myself, did I know these things before and just forget them like I forgot I had two children when I first got sick? I could tell you who my children were(their names) but I didn’t know what they looked like or even recognize their voices when they came to visit. Is this what is happening to me now? Did I know these things and just forget and I was I really just learning about farming? It’s not only about farming ,it’s everything! There are words that I feel I use out of context and when I think about what I said later, I will look it up to see if I sounded ignorant! This issue is starting to take a toll on my self confidence and my extroverted personality so much I question myself should I even put myself out there anymore? I know the ones that love me understand but the ones that didn’t know me before, are they thinking, did she really just ask that question? Did she really just say that? What is wrong with her? I don’t think she understands at all! And the sad thing is, I don’t! I find myself googling a lot and writing notes about things that have come up lately! I even started an argument on Facebook because of my ignorance about addiction and disease and I even brought it up last night and found myself trying to weasel out of the conversation since I dug that hole so deep, I was suffocating! I really do not like myself right now and the frustration is real! I feel like a kid in middle school learning all the subjects for the first time! Do I say, wait a minute! You are really losing me in this conversation or do I just sit there and stay quiet and nod my head once in awhile? What would you do? I like people, I like laughing, I like playing games, I don’t like sitting at home alone each day but now I’m wondering what to do! My husband and I were talking about trailers the other day, the kind you pull behind a truck to haul things on and I asked him if they pulled differently or backed differently and he said he couldn’t believe I asked him that! Well, I’ve never learned how to pull one or back one up! I could never understand the concept of backing one up so I stopped trying to learn. I changed phones recently and had an Android now I have an iPhone because my kids and my niece and several other people have suggested I get one! I am slooowly learning how to use it and my iPad and when I figure out something I can’t remember what I did to make it happen! I set up my printer, my echo show, Alexa and then didn’t write down the passwords so I had to do it all over again! This was an all day process that shouldn’t have taken more than an hour! I have managed to do lots of things I’ve never done before but I couldn’t tell you how I did it! Am I the only one having these issues? Please help me out! Until next time, stay well and stay home!
The pain has been unbearable today! I tried going out on my scooter with “Jack”my African grey to get my mind off of feeling so yucky but it didn’t go so well! It took everything I had to get back to the house and inside. By the time I got off the scooter I couldn’t pick up my legs! Usually it’s just the left one on most days but today, again, it was both. I usually describe this as carrying around a cinder block tied to my leg but today it felt like ten cinder blocks on each leg by the time I got inside and could sit in my chair! If they can’t find a cure for this disease wouldn’t it be nice to come up with something to stop the heaviness in your legs and the dizziness that never goes away? Would that not be awesome? Because if we get rid of the heaviness we could walk much farther and if we could get rid of the extreme dizziness we could drive! When I get worked up about anything this whole scenario I just described will take days and sometimes a week to get over! This is also what drama does to me so I had to eliminate this as well ! Boy have I felt better since this has been gone out of my life! I think everyone should do this! So here it is 8:00 at night and after a two hour nap I’m back in the bed because I over exerted myself doing pretty much nothing. But, I am glad I can still do pretty much nothing because it could be much worse! For any physician to think people with MS don’t hurt they shouldn’t even be a physician! No, in the early stages you don’t hurt but you also can still work and participate in physical activities and anything you may enjoy doing. My biggest hobby was water skiing in the summer but I couldn’t do it now if you paid me all the money in the world! I just wouldn’t be able to! I also enjoyed golfing, playing volleyball (and we still do that in the pool) and roller skating and now I have to wear a life jacket in the pool since I swim like a dead fish( I can only swim to one side) but I can still enjoy the water! If I had known the last time I went skiing was going to be my last time I would have skiied until I collapsed. I enjoyed it so much! I can still hit a golf ball with a driver and using a tee but I cannot hit it in the fairway to save my life! I needed to write this tonight to get past my emotions blow off some steam so I hope you understand this disease a little more today after reading this. I may not look like I’m dragging both feet when I walk but I promise you I feel like I am. I will also look like I’ve had a stroke late in the afternoon if you try to hold a conversation with me face to face. Mike will ask me many times during the evening if I’m ok because even when I’m not talking my mouth droops to one side and I can feel it when it does that and it scares me so I know it scares him. There is no way to tell if I’m really having a stroke so hopefully this will never happen! Thank you for reading my blog and keep praying and believing because it really does work! God is so good all the time!
Most people that don’t have a chronic disease won’t understand my post today but I was talking with a long time friend last night about her rheumatoid arthritis and she told me she just couldn’t imagine having to deal with pain all the time and keeping a positive attitude. When I’m having a really bad day and pain medicine just isn’t doing it’s job I have to go back to bed and start over later during the day. When I wake up in the morning ( before I even get out of bed) I can tell you how my day is going to be just by the way I feel when I wake up. There are so many nights I cannot sleep because the pain in my entire body is so bad. I will eventually end up in my recliner sleeping because I just can’t get comfortable no matter how many times I change positions or how many pillows I use to make things feel better it just doesn’t seem to help! I woke up this morning feeling like I have been run over by a semi truck but I have to keep going and not give in to this disease! Someone said to me her neurologist told her when you give up ,your condition will deteriorate faster and your giving in to the disease! This is so true! Every day I try to make a list of things I need to do and most days I don’t accomplish them all but I do manage to get a few things done! You have to set goals and stay active and don’t think about how bad you hurt! I make several trips to the pain clinic in a month to get injections and it will ease my pain for a couple of hours or maybe even a couple of days if I’m lucky! We have to do all we can to live our lives to the fullest even if you have to push through the pain to get through the day, you can do this! People in the early stages of multiple sclerosis will not know exactly what I’m describing. I never understood why my friend that has had MS much longer than I have , years ago, why she hurt all the time because I never had any pain! Now I know how she feels after dealing with chronic pain for almost ten years! I was so glad I didn’t feel like she did and to this day she is still pushing through it! We may be in bed more than we are out of bed but that doesn’t mean we’re giving up! The chronic pain is a full time job! When I’m sitting or standing and I’m having a conversation with you it will take my mind off of it for a few minutes but it’s still there and it never goes away! My joints hurt, even in my toes and if I could post a picture I would show you how my toes look and I’m sure you would say to yourself, how does she walk? It is very painful but I will not let it take over my life! Just recently I fell over my vacuum cleaner in the hallway because we didn’t have a nite light in the hallway and someone was too lazy to move it out of the way! I hurt my back, my hip, broke my glasses and injured my elbow! My elbow hurts so bad at night I feel like it’s being crushed by an elephant! There is nothing I can do to make this stop hurting! I want to scream and cry and throw a temper tantrum because I hurt so bad but what good will that do? I PRAY AND ASK GOD TO PLEASE RELIEVE MY PAIN, sometimes I get relief from pleading with God to help me and He does! He knows how much I can tolerate and He will give me the relief I need! I know that may sound crazy to the ones that don’t believe in God but without Him, I know I would not be walking or even self sufficient! He has brought me through each time I have needed Him! So if you are dealing with chronic pain as much as I am, turn to God always! Not just when you think you need Him! I thank God every morning when I wake up for giving me another day and allowing me to bask in the joys of this journey! It’s not all Joy all the time but you have to make the best of each day even if your healthy! Like my last post, don’t take anything for granted because it can change in the blink of an eye! Yesterday I tried to change the flags in my front and back yard and I only got the front yard done so today I will do the back! I hope you all have a wonderful pain free day until next time and I hope this post helped at least one person! If it did then I accomplished my goal in my writing for today! I love you all and God Bless!
As we were lying in bed and talking last night, I have never really thought about all the things we take for granted. I have always focused on how I took my health for granted and how others that are healthy should really thank God every time they can for being healthy and not having to struggle from day to day and not having to wonder how your day will be tomorrow! What crossed my mind last night was how quick things can be taken away from you and how we can learn from it! We had to sale our house in 2014 and find a place to live that we could afford. We were very blessed to be able to move into Mike’s grandmothers house after she died which gave us a place to live and eat and survive having heat and air and all the things we are so used to having! We had to move again into a rental house because issues came up in the family and they wanted to sale the house. This house was in a great location years ago but today it had really deteriorated and we really didn’t feel safe in that house. It eventually was sold and we moved into a rental home that we really liked but eventually this house was put on the market and the asking price was not in our budget was really not worth what she was asking for it so we had to find another place to live once again! Keep in mind, Mike had to do it all by himself when it came to moving and we had five children at one time and lots of furniture and material things that I packed up but wasn’t sure if I wanted to add that load onto Mike as far as packing EVERYTHING up and moving. I’m always trying to make things as easy on him as I can because it’s not always easy to find help, especially when your moving a whole house! We were blessed by Mike finding a home that the owners wanted to finance for us because when I got sick we almost lost everything we had worked so hard for over a 20 year span. Mike had lost his job after 20 years with the county( that’s another story on down the road). I was working 3 jobs trying to pay everything and then this happened and one of our vehicles were reposessed and we kept having to move because of circumstances we had no control over! When we found the house we are in today it was a blessing because I don’t know where we would be ! I fuss every day about how much work this house needs and all the repairs that need to be done but that’s not really what makes a house a home and I need to be grateful that we are not homeless! It can happen in the blink of an eye, anything can happen in the blink of an eye and my advice to everyone reading this is please don’t take anything for granted in your life no matter what you have and always always always thank God for your blessings! Thank you for reading this today and I hope I gave you something to think about! I love each and every one of you! Have a blessed day!