Jump to content

The Girl Who Blogged

  • entries
    31
  • comments
    121
  • views
    5,677

Six Months


ClaraOswin

993 views

It's been about 6 months since I was diagnosed with Rheumatoid Arthritis. Some days I still feel like it's basically a death sentence. I look at my hands and feet and panic when I think about what could happen in the future. I freak out when I think about the possible side effects of the medication I am currently on (and the medications I will likely need in the future.) I feel like I'm too young to have to deal with this sort of stuff. Until 6 months ago, I didn't even really know what RA was. I'd see the commercials for meds and I just assumed RA was like Osteoarthritis....something 'old' people get. I had no clue. I wish I still had no clue.

In some ways, I think I am quite lucky that it was caught fairly early. Of course, it's hard to feel 'lucky' at all though.

Last May, I woke up one morning and when I stepped out of bed, my left foot hurt...a lot. I had no clue that the day before would be my very last pain free day. Possibly forever. I know in the big scheme of things, RA is far less awful than many medical conditions. I don't know if that really makes it any easier to deal with though.

I dealt with the foot pain for a while thinking it would likely go away on it's own. When it didn't, I went to the doctor. They took some x-rays and found nothing. I was told to take ibuprofen and call back if it didn't improve. Eventually, the same type of pain showed up in my right foot. I decided to see a podiatrist. Then the pain started to get a little better so I canceled my appointment with the podiatrist. Sometime in July, I think, I woke up with hand pain. Now...hand pain wasn't completely new to me. At the end of pregnancy I developed carpal tunnel which is apparently sort of common. The hand pain from that went around when my son was close to 1 year old. But this hand pain in July was a bit different. It was basically the same pain my feet were in. This is when I became quite concerned. Googling led me to many things about RA. It scared me.

In August, I woke one morning to a swollen finger. I knew I needed to get back in to see the doctor.  The took blood and I waited. Waiting sucks. I kept going online to check for my results. When they finally showed up, I saw my Rheumatoid Factor was a 20, which isn't too insane. It meant I could have an autoimmune disease. But maybe not. The nurse called and told me that based on my results, I likely didn't have RA. Everything else was normal. I felt so relieved.

Then...my doctor called. I should have known this was bad. She told me my anti-CCP was 193. Normal is only up to 17 or something like that. She said this means I almost certainly have RA. I was devastated. I had read such awful things about RA. I have no many other "issues" right now that this was just the last thing I needed. This news came on a Friday. She got me in to see a rheumatologist the following Monday. They took x-rays and told me scary things. On Tuesday, I started methotrexate. It's a pretty awful medication but it's the go-to when people are diagnosed with RA. I am thankful that I haven't had too many side effects. I try not to think about all the possible horrible ones. When I do think about it, I panic a bit. Same goes for when I think of the future. 

I've never been a "take it one day at a time" person. I am a planner. So something like this is really rough. It's basically shattered all of my plans. So I've been feeling quite lost.

I just saw my doctor. I have to go in every 3 months for blood work. He is pleased when how I am doing. I don't have any swollen joints. My pain is pretty minimal most of the time. Again, I think I'm very lucky (so far) compared to a lot of RA patients. But some nights, I stay up late because I worry I could wake up with some new/awful pain.

I really hope that over time, this will somehow get easier to cope with. It's going to be hard when May rolls around and marks 1 year since I've been pain free.

Letting go of the life I had and the life I thought I'd have in the future is probably the hardest thing so far.

  • Upvote 2

4 Comments


Recommended Comments

MarblesMom

Posted

Thank you for sharing a very personal story and your feelings.  Sometimes life deals us a very unfair hand. 

I am glad you have healthcare and doctors that are on top of things!

A diagnosis does not make the person.... you are still you, pre-diagnosis, but with a new reality.  "No one is youier than you," said Dr Suess.

I am always here to listen/read. 

  • Upvote 2
Link to comment

I have spondylitis, most likely ankylosing spondylitis but right now my doctor is still coding it as "undifferentiated" so I cling to that.  I frequently panic and have anxiety attacks about the future as well.  It's horrible, I can be reading a book or watching TV and then the next minute I'm freaking out about my neck, or my shoulders, or my back and where I'm going to be in 20 years.  Staying busy helps but it's hard because I get so tired. You got diagnosed early, which is good.  All my bloodwork is negative and it took me years to get a diagnosis.  

Autoimmune diseases suck.  I'm sitting here icing my hip because I just got injections in it today after 3 days of misery.  I was diagnosed in 2009 and I think it gets a little easier after you've been diagnosed for a few years and you see that your body hasn't fallen apart in that time, and things are mostly the same.  Even though I had read that damage takes a long time accumulate, seeing is believing I guess.  I always try to remind myself that each case is different, some are mild and some severe with lots in between.  I'm rambling but I just wanted you to know you're not alone and I understand.  

Link to comment
ClaraOswin

Posted

I thought I read something about people with RA usually getting a lot of damage in the early years. I can't remember now though. I try not to google too much anymore. Way too scary.

My doctor thinks I am doing well. He isn't even considering adding biologics yet so I take that as a good sign.

  • Upvote 1
Link to comment
AliceInFundyland

Posted (edited)

Chronic anything just sucks. I'm your age..I've been told I have arthritis in my hip which for the moment I am choosing to kind of ignore to focus on chronic mental health stuff, and also the possibility that my recent weight loss plus switch to cymbalta may alleviate some of that issue. But I relate. I really do. Our bodies just start doing things to us and we think "what the heck! I'm too young." Just know we're all going through similar crap. :my_heart:...and don't google!

Edited by AliceInFundyland
  • Upvote 1
Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Posts

    • Maggie Mae

      Posted

      5 hours ago, formerhsfundie said:

      "Fundraising is getting so much harder. I blame the price gouging that’s affecting everyone except the extremely rich. People can’t spare what they used to, because life is getting more expensive. Food, housing, and everything else is climbing up and up."

      "The poorest are hit hardest because of the greed of the richest. I truly don’t know what we are going to do. We need to move again because we can’t afford to stay in this area. Moving itself is expensive, too. We haven’t received any donations yet toward moving."

      And honestly I do think it’s because so many people are struggling more than ever. We just don’t have the “same $20 to share around” that we had even a couple of years ago. And that is scary.

      They aren't completely wrong. Inflation IS making it hard for everyone. Wages aren't and haven't matched inflation in a long time.  However, economics is a complex topic and there are a thousand reasons why food, housing, and basic supplies are more expensive. [snip long paragraph of stuff no one cares about] 

      The "I truly don't know what we are going to do" is ridiculous. I have a suggestion. 

      Get. A. Job. 

      Like every other person who wasn't born into the 1% (and even they have jobs.) Plenty of people are struggling with mental and physical health and still go to work. Go sign up for a temp agency. There are tons of jobs that are just one or two days - company needs someone to catch up on filing. Company Y needs someone to sort out some boxes. Company Z needs someone to fill in and answer phones for a week. It's money that can help.  I can't see how someone who has experience with public speaking, can write coherently, and operate computers and basic software couldn't keep a job. I see people every day who don't email, can't figure out websites, don't know a browser from a bulldozer. Unemployment is at like 4%, everyone is having workforce shortages. We've hired so many terrible receptionists and had an administrative assistant who called out 25% of the time and we still worked with them. 

      4 hours ago, Mrs Ms said:

      Any I have been to in Germany and New Zealand had one person handling the cash and other people serving. Plus power and hand washing facilities. Usually with a few tables and chairs right next to the sale area to sit and eat immediately. 
      Plus all the ones in Germany I saw had display cabinets for the products like in cafes. I think the ones in NZ usually had insect shields and/or see-through lids and weren’t right at the front edge of the table. 

      So in the US, a bake sale is usually something put on by a group - like the French club wants to go to France, or the Band needs to raise money to get new uniforms, or a church group wants to raise money to send to a natural disaster type place.  They are low-key -usually, people donate some brownies or cookies, and it's just a couple of card tables in a hallway or on a sidewalk somewhere. They aren't going to buy glass display cases and set up a storefront. Maybe in areas wealthier than mine? 

      Not only is that a waste of money that they need to get to the fundraising goal, it also would open up a ton of liability and be against the law. Restaurants have to follow very specific laws - they pay $$ for their building, for commercial equipment. The employees go through either ServSafe or Food Handlers classes or both. 

      They have to carry certain types of insurance (commercial liability, liquor liability if they have a liquor license, music licensing if they have music, property insurance, car insurance if they have commercial vehicles, excess/umbrella, etc. ) They have to renew licenses and undergo extensive permitting.  They have to submit plans (all of which come with a fee), every time they change things.  Everything is inspected and regulated-  seating, business plans, outdoor seating, signage. It's extremely expensive to start a restaurant and I don't know why anyone would want to, the margins are so low. They require so many employees and there is so much overhead. 

      The bake sale where some kids sell each other cosmic brownies at lunch a few days a month is one thing, but setting up a permanent location where you ship orders, or operate what appears to be a bakery that skipped the legal process is another.  

      I guess I'm just a little confused if we are talking about the same thing. Because a place with dedicated staff, display cases, and seating sounds like a bakery to me, more than a bake sale.

      And more so than the unfairness of a charitable group being able to operate an unlicensed business at a lower cost than a business that invested heavily and paid for the right to be able to operate, we are talking about food and food safety. Which should be regulated because foodborne illness can kill people. 

       

    • Maggie Mae

      Posted

      I hate open concept houses almost as much as I hate Abbie's cluttery "style." I hate that open concept became a trend and I feel like I've been screaming at clouds since like 2008 when it first started being "the trendy way." It seemed like at the time everyone wanted it so that they could see the TV from everywhere. But it's so impractical. Noise just bounces around. Ever go to a party at a house with just the big cavern with a kitchen in the corner? It get so noisy that people are shouting at each other. Vs a normal house, where people can go into other spaces to socialize in smaller groups - you can have some people in the kitchen, some in the living room, some in the family room. And it's just so frustrating when you need to find a way to close the kitchen to keep dogs and kids out. 

      I also think braggie's fridge is dumb. It comes with a pitcher for water. Great. I can buy a $35 pitcher with a filter and fill it in the sink and get the same result. 

      • I Agree 1
    • Giraffe

      Posted (edited)

      Their level of agressive entitlement is unreal. Too bad their fellow anti-work comrades aren't helping them out. 

      Edited by Giraffe
      • Upvote 1
    • JermajestyDuggar

      Posted (edited)

      There’s nothing you can’t live without? 🤣🤣🤣 Says the overprivileged fundie princess with the stove which costs over $10,000. Whatever you tell yourself so you can sleep at night Braggie 🙄

      993120E6-AA5A-4552-B36E-FC72B678C2A7.jpeg

      Edited by JermajestyDuggar
      • Eyeroll 5
    • Mrs Ms

      Posted

      9 hours ago, Maggie Mae said:

      But where do they wash their hands after taking money and before handing over open, unwrapped food? How does the department of health track down who donated the Salmonella pie, if they aren't required to keep a list of who donated what product? How do the volunteers keep the open and unwrapped food from being contaminated by nonfood materials if it's just sitting on a table in a gym or in a parking lot. 

      Any I have been to in Germany and New Zealand had one person handling the cash and other people serving. Plus power and hand washing facilities. Usually with a few tables and chairs right next to the sale area to sit and eat immediately. 
      Plus all the ones in Germany I saw had display cabinets for the products like in cafes. I think the ones in NZ usually had insect shields and/or see through lids and weren’t right at the front edge of the table. 
       



×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.