Symptoms of Being Human

​The last time I posted on my blog was 2021. I was shocked when I read this. So much to share since December of 2021. I could be here all day but I’ll pass. 

The reason I am here in this moment of time is because I read the title of a song called Symptoms of Being Human. I don’t know why but that one hit me like a brick. My head went right to thinking, what about the symptoms of chronic illness, but then I stopped myself. I started to think of the symptoms of being human that we all faced when a global pandemic hit. We all were affected together. Those who lost loved ones, friends, and coworkers. There’s a good chance we all new someone who lost their life to the virus. If not we certainly either had the disease or know someone who had the virus, maybe more than once. We all felt the pain. We felt the uncertainty together. We all missed out on life but also came together encouraging those who needed it the most. The symptoms of being human really made us think about our lives. One of the hardest questions we asked ourself, and maybe still are, is what does the future look like. Many are still trying to figure that out. Everything still feeling so unknown. It’s hard to get back to some kind of normal life. The best part is that eventually we all will it may just take a little more time. One of the greatest symptoms of being human is our resilience. We always bounce back.

We are all human so we are able to relate on the symptoms of being human. But what happens when chronic illness hits? The symptoms of being human can be brutal at times. The why’s. The trying to figure it out. The finding doctors and getting the appropriate care. Finding the energy to make it through the day. The tests. The surgeries. The procedures that all seem to never end. The list goes on and on. It is a little more complex and few will ever be able to relate. How sad this is for those of us who manage our daily lives with chronic issues. No one understands. People try and let me tell you from experience there are some absolute angels out there who never give up on us. We appreciate them so. The symptoms of being human turn into the symptoms of survival on a daily basis. Most of us try our best to stay positive and put on the face of normalcy but we are anything but normal. We fight, hard. We dream of only having to deal with symptoms of being human and wait for that day to return.

God Bless!

Dianne

A Day in the Life

 

Welcome to the madness. This is me getting organized. It may resemble a small war zone or possibly the kitchen of a hoarder. Believe me its not. It’s the kitchen of a person struggling through unforgiving chronic illness and pain. You would think once in a while the illness could apologize. Just say, “Hey buckle up todays not going to go as you planned in your head,”refer back to the photo. It’s much more disastrous in person. I’ve learned photos have a way of being forgiving. Last week I ordered the storage containers to the left of the sink along with exciting plans, in my head, to get organized. A few days ago I took the containers out of the box and unwrapped them all and put them on the table. Baby steps happen when you live with chronic illness. Today I woke up, found myself in my madness, drank my coffee, moaned a lot, and decided to start the process of pulling all the staples out of the cupboard to organize them. I did a few containers then left for an appointment. I made a stop at the store for a few items which is always a deal breaker for any physical plans I have for the rest of the day. Couple this with the pain and mental struggle and the fatigue takes over. I pushed myself to finish the rest of the containers and that was that, time for a rest. The rest of my day will consist of getting the mess back in order. Little by little it will happen. 

This year has been absolutely brutal for Rich and I. January foot fusion, from the arthritis, with lots and lots of plates and screws. Six weeks of non weight bearing which meant a scooter to get around. Walking boot for six weeks and progressed too a shoe which is extremely hard after not walking for 8 weeks. It was hard but to say the least, but we made it through. I was on the mend but continued to have severe worsening pain. Seven months later doc order a ct scan which showed a broken bone. This led to another foot surgery in September to remove some hardware and to fix the broken bone. More screws more plates in another area that had not fused since January. Very frustrating to say the least. This second surgery was basically no different from the first, non weight bearing again for six weeks, and much more frustration,  and sadness. Everyday was a struggle I never imagined this would happen to me. Well, we made it through and after the six weeks here we go again. Walking boot for another four to six weeks then progress to a shoe. I am currently in the medical shoe I had from last time because the swelling is so bad its impossible to get a shoe on. The swelling and pain were so bad I didn’t think I could do it anymore but its really not like me to ever think like that. I’ve never felt so alone and isolated in my life. Keeping my head above water is all I can do right now. I can’t see outside myself right now. Some people may think that sounds selfish but it’s not at all. It’s my reality at this time. I know it will get better it always does.

Did I forget to mention I also had a knee replacement in June? All on a broken foot we didn’t know about at that time. Thought I should add that in for good measure. Compared to my foot the knee was a breeze. Painful yes but well worth the pain. The best part was I able to walk and living was easier being able to walk after surgery compared to not walking.     

The other foot and knee are an issue to that will eventually need to be addressed but for now I am focused on healing from this year. Once I am able to be more mobile and in less pain maybe I will begin to process having to deal with this all over again but for now no. A day in the life of chronic illness is never the same. You wake up not knowing what you’re gonna get. Could be a halfway decent day or a halfassed day. You take what you get.  On most days I don’t understand but I do my best. I’m almost to my birthday again. How they come around so fast is beyond me. I will continue to make the best of this coming year. I’ll do what I can when I can and sit to rest when I have to. Focusing on me is hard. When your a giver it’s a battle of the mind. God is good and all the blessings around me keep me grounded. I’ll give where I can and continue to keep the hope!

God Bless!

Dianne

My Life is a made for TV Movie

 Scene One:

This morning as I was sitting at my island drinking coffee and wondering how my life has progressed to this, and by this, I mean what I am living. Over the past few years I've had a lot of tears over this made for TV movie life. I mean more of a made for TV reality show. Through all the tears there have been many laughs too. For example, I'll use yesterday. I honesty haven't combed or cut my cats nails since January. I'm not proud of that but its the truth. After many days of this Sunday ended up being the day Sunday. May sound like not a big deal to someone leading a fairly normal life without many physical limitations but for me its like a mountain. I grabbed all the tools, sat in the chair, and told Rich this is it. He held the kitties down while their nails were trimmed and that went well. One thing down and one thing left the combing. I sat back in the chair and said to Rich, "Now I have to get on the floor." Of course him in his usual fashion, "You can do it." So I did it. If this was a movie this was when the audience would either chuckle or laugh. I rolled out of the chair and landed on bertha. Ah, I made it. I was reluctant to tell him, "Ya, I know I can make it down but then I have to get back up." Chuckling to myself thinking this isn't going to be pretty as I combed mounds of fur out of my kitties. Crap, now its time to get up. Mind you I did get on the floor a month or so ago when I was home alone. I got on my knees to get up and I was dismayed. "What the heck am I going to do to get up?" I looked around the room and tried to figure something out until I decided to just pull myself up. You see when your knees are so bad and your feet are painful little things like this can be big issues. Laughing the whole time and talking to the dogs I managed to roll myself onto the couch. Out of breath from the weight gain, which has also tormented me, I laid on the couch laughing while the dogs licked my face to death. The big finish. When I think about it its pretty amazing how you can entertain yourself when you are alone. My therapists, known as Eva and Ella, apparently agreed. I'm happy to say at least I accomplished one thing on Sunday and the cats are good for a month or two. Rich got behind me and helped me up and we didn't even laugh. Success!

Scene two: 

The few years have been brutal to say the least. My feet have been a problem for years. I have told my Rheumatologists about them and all I ever got was deer in the headlights looks. I thought they knew about arthritis? Just very confusing to me. I know my medical history is extensive but come on that doesn't make me stupid. When you can visually see huge balls on the top of someones feet and they complain about excruciating pain wouldn't that set something off in at least one doctors brain to take xrays? Finally I got to the point where the pain affecting everything. Walking was getting impossible. I knew something was terribly wrong. I finally made an appointment with my PCP's PA and she was dumbfounded. She thought maybe the large balls were ganglion cysts so I was hopeful, finally someone is believing me. She immediately sent me to a foot doc. Xrays were taken and he said I had severe arthritis in my left foot and moderate in my right. Finally another doctor who understood what a relief. We had to jump through all the hoops. Injections that worked on my right foot but did nothing for the left. By this time the pain was so bad I could hardly stand it. I tried the more expensive shoes and inserts recommended. No help. All hoops failed so are you convinced insurance that I need some real help? Surgery was scheduled. In January Dr Buchanan opened me up and was more surprised at what he found. He knew it was bad but he said when he got in there it was a mess. He cleaned it all out and put three plates and fourteen screws in. He said the cartilage was gray and there was a yellow fluid in there that he took out. He validated all my severe pain and said he knew I had been in severe pain. I was so relieved after surgery. It was done now I could start returning to life. Not so fast. Six weeks no weight/walking on that left foot. I thought no problem I can do that. Wow what a ride that was. I found muscles I never knew I had and had to take valium to sleep. Ever go to the bathroom with one leg? Ever take a shower with one leg? No details but I am thankful more than ever for Rich. He was and is absolutely the best caregiver anyone could ever want. It was like he could read my mind. I guess he learned from me because a year before this fiasco he broke two ribs and had to have surgery. It was just awful but we made it through that and we will make it through this. I am still in pain, the foot is still swollen and I'm still using my walker at home and a cane when going out. I try to push myself. Mentally I am feeling much more myself with my positive attitude but there are still days I cry more than I ever have. I cry more because I can't see my family like I would or like I use to. Talk about excruciating pain. I won't even go there. Better days ahead on this front too!

Scene Three:

I knew I left something out of the first and second scene. My knees. I began having knee pain years ago. My first two Rheumatologists always tried to help me. The second was a master. I just loved him. He would come in the exam room and know by looking at me what was going on. I was truly heart broken when he left. He would be a hard on to replace and I never have. In 2016 my right knee began swelling more and more it was so tight I could hardly walk on it. He did an ultrasound and found a baker's cyst. He drained it and injected me with sweet meds that took the pain away, not a cure but relief. Since then I have had steroid injections that have helped. In the blink of an eye 2019 arrived. My left knee went berserk on me. Like the snap of the finger excruciating pain once again. Tears. Yes tears it was so bad. I couldn't put any weight on it without crying. It was the worst pain I had experienced from my arthritis as of yet. What should I do? If I go to the ER they will send me home and say call your rheumatologist. Of course I called my rheumatologist after a week of pain. It took a week because I was hoping the pain would go away as fast as it came on. It didn't so oral steroids. Absolutely no help what so ever. Called back and she put me on a higher dose for longer, absolutely no help. Called back again a few weeks later and she said come in for steroid injection but I can't get in for a week. Unacceptable looking back. I looked forward to that injection the whole week and the day before she cancelled. No reason just said not necessary. What?? I knew in that moment it was time to find a new rheumatologist. I ended up looking up orthopedics and found there was a urgent care ortho so I called and went in that day for an injection. Mind you this had been over two months of getting the run a round. The PA I saw at the urgent care was shocked I hadn't seen a doc and was in this much pain. The MRI showed arthritis and over time It began to feel better. Weeks of therapy too. I have been on a regular schedule every three months since having steroid injections since then. A month before my foot surgery guess what left knee went carzy on me once again. I couldn't put weight on it without that excruciating pain. Back to the urgent care. I got an injection and I have a brace. The brace made it worse so back for a different one. I also got one for the right knee that was starting to get stiffer. I had the foot surgery and the plan was that hopefully with the injection and six weeks of no weight on the left leg the knee would get better. Wrong. I started walking and the more weight I able to put on the foot also meant more weight on the knee. Both knees at this time have been stiff, walking is hard, steps the worst. This horror story continues. I was referred to a knee doc and he and I were not a good fit at all. First he comes through the door like Kremer on Seinfeld and scared the crap out of me. No knock or hi. I lost my total train of thought when he said,"Are you sure this isn't foot pain and not your knee?" Dumbfounded I didn't know what to say but I did manage to say no this is not my foot. He said, "Your xrays look pretty good." That's funny because that's not what I've been told. He ordered a MRI but I was done at that point. Thinking to myself no you won't be seeing me back in this office @**$%#!. I have decided after my last rheumatologist that I will not stay with any doctor who questions me in any manner that isn't professional or isn't treating my illness as it should be treated. Yes I have that extensive medical history but I am still a person. Yes I see a lot of doctors but I suffer and need help. So see ya later buddy. I called my PCP had her order the MRI instead of using his order. Talked to my daughter who works as a nurse in a surgery center and she gave me the name of her knee guy so this Friday hello Dr Hop. I had the MRI and this time on top of the progressing arthritis in all three compartments of the knee I have a large torn meniscus, a large joint effusion which is a fancy way of saying fluid, and a large bakers cyst. I believe this was the issue back in 2019 which was never addressed correctly. Exact pain and exact agony. This Friday may be the beginning of scene five in my made for TV reality show/movie. I am both nervous and optimistic. Could this finally be the right doctor to get my knee(s) back on track? Hoping he will find out what is going on with my right one too. 

Scene Four: (The Best Scent)

HOPE! The one thing I'll never lose. Yes there are days I want it all to end but then I remember my babies faces. I remember a man who is so selfless and would take my pain if he could. I remember my kids and the people who love me and check in on me daily. The pictures, videos, and Facetimes from my kids and grands. The friend who is like a diamond in the rough texting me all the time even though we can't see each other. The hope of meeting up with other dear friends soon. The hope that can be all but gone and then the spark that is ignited in their love. In their eyes. In their smiles. Grands asking when they can see me and that they miss me. Oh my heart. It makes scene four so much easier to deal with than scene one, two, and three. Love really does heal all, at least for me.

God Bless!

Dianne

A Year in the Life

Here we are with another year coming to an end. As each year begins I think to myself this will be my year and things will be better. December 31, 2017 I said it again, as I did the year before that, and the year before that. This year turned out to be one of the worst as far as health and even more taking care of my parents. My dad's Lewy Body Dementia became quite bad as the year progressed. We had to move him to assisted living hoping that was going to take some of the stress off of us, especially my mom, as his sundowners was becoming worse. But our experience turned out to be quite the opposite of what we had envisioned. The facility he went to didn't seem to have experience with Lewy Body behaviors which in turned made it rough on my mother and I. Phone calls when they didn't know what to do with him, unnecessary visits to the ER, and his behaviors becoming much worse. In the end we had to call hospice to start palliative care which turned out to be a blessing for all three of us. It was the first time in three years we started to feel more relaxed about the steps we were taking in his care plan. I hate to say it but was a blessing that he passed but it was. Those who have never experienced a situations such as ours may think it is cold and uncaring. Quite the opposite. My dad would have died if he knew what his behaviors were like in the end. Stupid disease is all I can say. His whole life he helped and cared for people and would never hurt anyone. He became a police officer to do just that. The stories he would tell me about helping people were dear to my heart. All the abused women and children he would get help for and check up on them, the homeless people he would personally take to Mel Trotter for the night because they were drunk or laying on the streets in the cold. He could have been a jerk and left them on the side of the road but his heart was too big. The kids he found in a house when he went to arrest the parents and the kids were in two big holes in the couch and said that was where they slept with the mice. He scooped them up so fast and got them out of there. I know that one really affected him. The teenagers he would pull over while they were drinking and having fun and if they weren't to drunk he would take their booze dump it out and let them go. Mind you that was a different age and time so you must take that into consideration, he just remembered he was a kid at one time too. Oh the stories I have of his goodness. You hear of all the bad stuff cops do and I don't disagree there are some dirty ones but for every bad one there is more than likely many more good ones. Believe it.

I didn't intend for this blog about illness to go on and on about my dad I actually came here to write about a year in the life of chronic illness. There are so many illnesses I could write down for this year but it might make your head spin right right off. The tip of the iceberg. I was back on prednisone this week for my RA knee pain and it got me reflecting over this past year. I absolutely hate to admit it but according to my head count I have been on prednisone either eight or nine times in 2018 and we still have a few weeks to go. Yikes and yes you read that right all you anti steroid medication takers out there. It seemed like I would conquer one issue and another would pop up. It was either sinus issues, bronchitis, knee/joint pain, or my asthma all on a consistant rotation basis. I even had two doctors make unnecessary comments. One being, "You don't look sick." (sinus infection) The other, "We are going to be calling you a frequent flyer soon." (bronchitis) Seriously? It's like you go in shock when you hear this stuff. Do they really think people could make this stuff up? I don't get it at all. Needless to say if you can avoid urgent care and see your own doctors office doctors do it. Lesson learned.
This year my asthma has not played well at all. My lung function was down 14% last time I had my breathing test so my pulmonologist added another inhaler on top of the ones I already use regularly. I am happy to finally have that under control and am back on my regular treatment plan. Hope this doesn't jinx me writing that. Having infections non stop is not good for asthma breathing issues, it all seems to be connected. The only thing that helps through a flare of asthma is prednisone and believe me when you can't get air in your lungs you will take anything they give you to be able to breathe.. I have been very agitated and anxiety has crept in this year. I know my dad was a lot and contributed to my health problems this year. I didn't take care of myself at all. It was go, go, go at 100% speed not only physically but mentally. After my dad died I really hit rock bottom. I've never dealt with depression but if this was it I had it. My last bought of bronchitis started October 1st. I was back to the doctor two times after that for a total of three rounds of antibiotics. I finally feel like things are coming around. When I went back I talked to her about the anxiety and depression and started a low dose antidepressant. I am finally feeling more like my happy self. I think. It still seems up and down but definitely more good days than bad. I still feel like I'm on a roller coaster trying to figure out my life again but I will get there. Reflecting back is good it helps you make sense of things but I've also learned you can't stay there forever. Rich helps me with this. Looking back helps you look forward. I continue to tell myself things will be better in 2019 because I truly believe they will. Once again it all goes back to that one little four letter word. HOPE. I made it through somehow, someway. Giving up is never an option. Going through the hard times makes us appreciate the good times more. Realizing how good I have it even in the bad, even on my worst days, gives me hope for a brighter tomorrow. I hope you can find that too in your journey.

God Bless!

Dianne

Who's to Blame

Human nature sure likes to trick our minds into thinking everything that happens to us has to have a reason or an answer. Think about it, everything that happens to us that we don't like or agree with instantly puts us into the mode of blame. It has to be someone or something's fault. Life should be good and always happy according to our standards.

Last night was a rough night for me as far as pain goes. I started wearing my fitbit during the day to push myself to walk more and to stay more active. Keep moving according to doctors which is so easy for them to say. I'm doing it. A few nights ago I decided to start wearing it to bed to see my sleep patterns and map out in my head if they are as bad as I think they are on the nights I toss and turn in pain. Last night it said I was awake and restless a total of thirty seven minutes. When I looked at it this morning I thought to myself that isn't so bad but when I think back on the night I feel like I want to yell at the fitbit and tell it something is wrong with those readings because I was awake a lot more than that. After all I have to blame someone so why not the fitbit, stupid thing anyway. I pulled myself back together and realized sleep deprivations makes me cranky.

I had Mya overnight for a few nights and after I dropped her off I heard a song from quite a few years back by Sara Evans called A Little Bit Stronger. Like most songs it's about heartache and a break up I listened to the distant words and each one came back as I tried to sing with my scratchy crap voice that has withered away over the years. I thought to myself this could apply to being sick everyday of your life.

A Little Bit Stronger

Sara Evans

Woke up late today, and I still feel the sting of the pain.
But I brushed my teeth anyway, got dressed through the mess and put a smile on my face.
I got a little bit stronger.

Riding in the car to work, and I'm trying to ignore the hurt.
So I turned on the radio, Stupid song made me think of you,
I listened to it for minute, but then I changed it.
I'm getting a little bit stronger, just a little bit stronger.

And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
But I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.

Doesn't happen over night, but you turn around and a months gone by,
And you realize you haven't cried.
I'm not giving you a hour or a second or another minute longer.
I'm busy getting stronger.

And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
But I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.

Getting along without you baby,
I'm better off without you baby,
How does it feel with out me baby?
I'm getting stronger without you baby.

And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
But I'm telling myself I'll be okay,
Even on my weakest days, I get a little bit stronger.

A little bit, a little bit, a little bit stronger.

I get a little bit stronger everyday, every year. I use to blame everything and everyone. I'd get mad when I saw happy people my age able to do whatever they wanted physically. It seemed so unfair as I hardly had energy to go out to dinner with Rich. I use to let that mind game hell consume me, but not anymore. Now I get up and say bring it on bitch. I've gone from crying to Rich about how unfair this is to not caring much, even after a night like last night. If I can'd do something I can't do it, after so many years it becomes your life.The guilt of holding Rich back in life begging him to divorce me so he could have the life he deserves with someone else. When I think back on that and even writing it now it makes me laugh. That's how I know I've come such a long way. If the tables were turned there would be no way in hell I'd leave him if he was the sick one. I've grown that's for sure. I've learned to take the good with the bad, just as everyone else does with their crap.

I have to believe tonight's sleep will be much better than last nights.Its no ones fault. Its the disease. Disease hates us and for some reason wants to devour us. It's still hard but changing my attitude has helped me so much. Doing more things that I love or just sitting and doing nothing but binging on Netflix. Working hard on taking the negative out and putting some positive in. It's not always easy. It's like a full time job in it self but like I always say I will win over this disease today and forever.

Disclaimer: This is today who knows how I feel tomorrow...the story continues. Hang on my friends and keep up the good fight and if you have to blame something or someone, go for it. Just don't let the blame last for too long.

God Bless!

Dianne

Chronic Marriage

It's fall if that's what you want to call it this year. This year it seemed like summer until the end of October and rain non stop since. Our favorite time of the year around here. Hunting and walking in the woods without dying of heat stroke and actually being able to breath to some degree. It's also a time Rich takes a few days off from work not only to hunt but to clean. You know do all the things I hate doing one being washing windows. I always say, "What does it matter anyway they just get dirty again anyway." Today before he went outside to do the windows he said, "When I get done with this I'm going to clean the floors." My eyes popped out of my head and of course my mouth opened, "Oh no you're not." We argued on the subject for a few minutes and he went outside. Immediately I got all my stuff out and started doing the floors. That's my territory. It's funny how we both look at that so differently. He looks at it from the standpoint that I shouldn't be doing it because of my breathing anf other issues. I look at it as he's taking away my jobs. The things that give me meaning. Sounds silly doesn't it? Even as I write that I have to chuckle. To all the fairly healthy people who look at cleaning their floors as an inconvenience. It's Mount Everest for me. I know people are thinking wow how lucky you are to have a man who wants to do it. If that's what you are thinking you are completely missing my point. It has nothing to do with that because believe me I appreciate everything he does for me. The basic point is that when you are sick and people try to do all the things you use to do it is mentally and emotionally hard to have those things taken from you. The word worthless comes to mind every time he so innocently tries to do the things I have always done. I don't want to give up anymore than I already have. Chronic marriage is just that chronic. The illness doesn't go away. In fact Rich is the only one who truly knows. Example this morning. I laid on the couch until almost noon trying to get enough energy to get dressed. Yes, that is chronic illness, our chronic marriage. He has to not only put up with things like that but my bitchy moods when I feel like crap. My snapping at him for nothing at all. Oh wait that marriage. I know, minus the illness, there are so many things and times I annoy the hell out of him too. But it's ok because this IS forever, our forever. In sickness and health. We both took that one serious but he gets to show and live it daily.
I honestly never would have thought about this because it's just our way of life, until last week when someone made a comment to Rich that I don't want to repeat. It made me think about all the shallow ignorant people who have no filter when it comes to illness. The more I thought about it the more I realized it may or may not be stupidity but just that some people have never experienced the chronic part of illness. We all have illness affect us in one way or another but until it happens to you or someone you actually live with you have no idea so it may be a better option to say nothing. Try to care about the person and what they live with. I wish people could ask Rich how he is doing in all this. It seems nobody does. Caring should come before ignorance in any situation regardless. It's actually quite simple. I don't have much more to add to that.

Writing this helps me to move on from comments like that. It helps me to write it here and wipe it out of my head. It helps me to look through clean windows and see the man I love out there on the ladder doing what he does best, taking care of me. I am thankful for that everyday!

God Bless!

Dianne

Changes are in the Air

Well, Hello there. It's been a while. How've you been? I have purposely stayed away from here for reasons too many to write about. I cranked up the Pink Floyd and my creative mind decided to run the gamut on all I've been through over the years. I try not to go back too far because then it puts me in the negative place of asking all the why questions and being a person who hates negativity I stopped the crazy. I in turn whittled it down to the last two years, which then became the last year, give or take a month or six. Its been a rough summer to say the least or maybe more like a rough year but shortening it to summer sounds less stressful and painful, at least to me. It always amazes me how much my mind controls when it comes to pain. When I'm in it there are times it is excruciating and there the times it's doable and other times it's not, but I still believe the mind controls what we tell ourselves and after the painful times are done I can always convince myself, "It wasn't that bad." Plus I made it through to the other side of it." In the end that's all that matters.

It will be a year on January 3, 2017 since I started a new RA biologic drug called Humira. Yes, I know the actual and and I capitalized it since I had high hopes when I started it. Especially since I would see the commercials of people on the drug who where flying around on merry go rounds and had roses and kisses coming out of their asses. It was going to be the answer to all my pain and my life would be "normal" again, at least my normal. Funny, because my normal has been anything but for a long time. The joint pain, fatigue, answelling has controlled my life long enough. I thought, or at least hoped, after I started the Humira things would change but that's when the side effects took center stage, always an issue for me the side effects. Ugh. Humira does not play well with asthma/copd. My breathing became so bad I could hardly do anything without having to use my rescue inhaler, this on top of two other inhalers I was on. I called my rheumetologist and he said if this continued we would have to try a different biologic. The problem was just after that call I got a letter he was leaving and moving north, far north. Talk about a stab in the heart. I really connected with him and he was such a help to me over the few years. I was heartbroken. Now what? Over the years he had been my second rheumatologist and now I had to find another? I know it doesn't sound like a big deal but believe me it is. With all our complex medical issues we need a doctor who looks at us as a whole and finding one you mesh with can be difficult. In the meantime I stayed on the Humira and found a new rheumatologist. I have had three appointments witch him and I feel we are getting to that comfortable place with each other. I really like him and he listens to me and answers all my questions. Three months ago we switched to Embrel and wow what a difference with my breathing. I am off one inhaler and have been able to cut way back on the rescue inhaler. This is huge for me. You cannot imagine how exhausting it is not to be able to get air in your lungs it's unexplainable. All I know is I feel better and that's all that matters to me.

One other huge change is the level of pain I was experiencing. He gave me another cortisone shot in my knew three months ago when I saw him and the night time knee pain has significantly improved. This week was a cortisone shot in my hip for bursitis. I'm waiting for that to help more but it is an improvement during the day. Sleep can be hard when you are in pain. No sleep equals bad days for sure. The Embrel seems to be taking effect too because I am beginning to feel better as a whole. I woke up a few days this week and thought to myself. "I feel good." I cannot tell you the last time I have woke up thinking that. Fatigue and feeling sick all the time are just a couple of the symptoms of RA. I know people think it is just joint pain but it is so much more. It is a whole body issue. I could on with all the symptoms but why bore you with all that. I hope you get the point. The most importantly being if someone you know is ill please just believe them. I honestly don't know how anyone could make all this up. Have compassion, that's all. Like they say until it happens to you, you will never understand. True in all illness.

Changes are in the air and not just with the weather. I can feel changes coming on. I'm going to stay focused on that positive and not allow myself to look backwards too much and if I do I'm going to remember how far I have come in the past few months. According to my doctors the biologics can take up to a year to fully work so from here on out it can only get better. That being said I still have to take it slow. Pacing myself is how I get through all of this. It's so easy when you have a ok day to over do it only to pay for it for the next two or three days. I'm learning, slowly but surely but learning none the less. I only hope the same for you.

God Bless!

Dianne