I have not blogged in sooooo long. I need to get back to it. I’ve been super busy. I’m back in school now to get my paralegal certificate and I am still working. I took over a new position at work and I’m just starting to get into a routine. Anywho, I finally decided to get a new rheumatologist here in the city that I live in. There was nothing wrong with my other one, he just was an hour away and it wasn’t always convenient to me to make that drive.
Well I saw my new doctor on Wednesday and I absolutely love him. He right away sent me for an echocardiogram, PFT (never had one) and ct scan of my lungs. He’s making sure I don’t have any lung involvement because I told him I had shortness of breath on exertion (I think I’m just out of shape and the X-ray I had 2 months ago came back clear). He said he’s confident that all of these test will come back negative but he’d rather have them done. He also took blood and urinalysis and I’m due back to see him in a month. We are also gonna discuss changing my medicine (yay) since I’ve been on the methotrexate for about year. I haven’t seen any drastic changes nor have I gotten worse. Just going to reevaluate everything and make a decision on if we will continue. He has all my progress notes, tests, X-rays, etc. from the last 3 years so I trust him to make a good decision.
He informed me that he’s had scleroderma patients, both in the past and present. It’s only been one visit, but I trust him. He listens to me.
Outside of doctor visits, I’ve been in this weird funk lately. Like my mood has been really blah. I think it’s starting to really bother me that I can’t lift my arms over my head. When I was first diagnosed, the only symptom I had was raynauds. Something that didn’t really bother me so I never really “accepted” my diagnosis I just never thought about it. Now, three years later, I can no longer lift my arms over my head. It’s starting to hit me, hard. On top of that, my anxiety has gotten out of control 🙃. I need to get it back together. There’s a support group in my city though, I’m definitely gonna start going. I need to be around people that understand.
Lastly, I’m thinking about vlogging!!! I thought it would be nice to share with the world how I navigate through life living with my scleroderma. Let me know what you guys think!!
thetealbrickroad 
Wow. So glad the new doctor ordered those tests. Sounds like you made a good decision. It’s nice to have a closer doctor too.
I had to quit methotrexate because of complications. I’m now on Plaquenil and Myfortic (a drug like CellCept that is easy on the stomach) and I am better but recently started having shortness of breath. Reading your post I realized that while I used to struggle to raise my arms that isn’t a problem anymore. How about that. Also, I had off the rails anxiety that stopped after going on Plaquenil; I think that anxiety is part of the disease and not due to the stress/grief of dealing with it. I think you are smart to discuss different drug options with your new rheumatologist.
I started going to a scleroderma support group a few months ago and it has become a wonderful connection for me. I hope that you find a good group too.
Hugs!
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Hi,
Crazy how I thought it was just me!! My anxiety is out of control sometimes. I worry about the most outrageous things now.
As far as lifting your arms go, that’s really reassuring. My upper arm weakness has really been a damper on my attitude. How long did you have to deal with it and did you do anything to improve it?
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I remember I struggled to blow my hair dry because I couldn’t hold my hair in the roller brush more than about 15 seconds. I had to prop my arm on the towel holder to get the dryer up. Mostly I just tied my hair back. 😦 Now it really isn’t much of an issue. I even grate cheese without any problems. 🙂 I am still struggling some with stairs because muscle fatigue in my legs.
My anxiety was so bad I couldn’t sleep. I was in almost panic mode over little tiny things and I couldn’t shut it off. When one worry resolved i just focused on something else. When I got better I realized it was a real symptom. I also became disoriented while this was going on; I got lost driving home from my son’s because all the freeways looked the same to me and I couldn’t figure out where I was. All of this stopped within 6 months of starting Plaquenil. I also have Sjogren’s and it’s possible that it was partly responsible. I didn’t do anything specific, and it improved so gradually I didn’t really realize how much better I am until I read your post.
It’s an adventure, huh!!
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