SO much excitement… :/

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Let me just tell you how thoroughly excited I am that these babies are back in my life. (Can you hear my sarcasm?)

After quite a few years injecting myself with first methotrexate and enbrel, then vitamin B12…I have really enjoyed the last year or so where needles have not been a fixture in my household.

Oh well, here we go again I guess…this better freaking help me feel better!

6 Comments

Filed under Chronic Illness, Uncategorized

6 responses to “SO much excitement… :/

  1. Did any of the injections help in the past? I’m desperate to get some relief. If it takes needles, I’ll do it. I’m used to needles, anyway with all the hospitalizations, surgeries, IV’s, pic line, all the lab work all the time. I’ve had to give myself injections all the time after surgeries to prevent blood clots because I also have factor V Leiden, a blood clotting disorder.
    Peace,
    Tammy:)

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    • Tammy,
      The Enbrel/Methotrexate was for psoriasis/psoriatic arthritis (a degenerative arthritis similar to rheumatoid arthritis). They are supposed to prevent/slow down joint damage caused by the arthritis. I HATED the methotrexate, and would NEVER take it again. It has horrendous side effects, and I wouldn’t be surprised if it did permanent damage to my body.

      The Enbrel did help my psoriasis, making it less itchy and flaky. I don’t have much visible joint damage as of right now, so it probably was preventing it? I can’t really say until I show some damage, since I’ve been off the Enbrel for about a year.

      I have also taken B12 injections (which is also what these lovely needles are for, as I have recently restarted them). Those definitely do help, as I have chronically very low B12. This is common in fibromyalgia patients, and can cause serious, and sometimes permanent, nerve pain if levels stay extremely low for too long. I know because that happened to me. :[ I have permanent nerve pain in my feet because my levels were around 200 for a very long time (“normal” is 200-900). Currently I am around 390 and will be doing injections for the next several months to bring it up, and then occasionally for maintenance.

      I recommend getting your vitamin levels checked, including B12, D, and magnesium…these are often low in fibro patients and can each cause different types of pain when they are too low.

      Feel better! :]

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      • Thank you for that information. My mom takes Methotrexate for her autoimmune disease and she thinks it really helps, but different things work better for different people. I sure hope you got off it before it could do any serious damage to your body.
        I’ll have to get all my lab work out and look at all my levels. I’m constantly having lab work done and I always get copies because they will say everything looked great and then I get copies and see all kinds of things that were either high or low. Why they ignore those things and say everything looked good, I don’t know. I’ve learned you have to be your own advocate, a long time ago.
        I went to the ER Thursday night for severe abdominal pain. I have a long list of invisible chronic illnesses and pain, including fibro, gastroparesis, IBS, esophageal motility disorder, CFS, interstitial cystitis, adhesions, just to name a few, a total of 25 that I have written on my list here in front of me and I probably forgot a few since there are so many. Anyway, they thought it might be my appendix because I had all the classic symptoms and the pain was in that area, but they had to do another CT Scan, I’ve had so many it’s not funny. Hate to see what the repercussions of all that radiation is going to be in the long run. Scares me to even think about it, but with my history they always have to do one to make sure I don’t have a GI bleed since I’ve had one in the past. So anyway, they gave me some Dilaudid in my IV which really helped to get the pain under control, however, it kept making my oxygen saturation level and pulse drop way low. That was scary because I’ve had IV Dilaudid many times and never had that happen like that before. Maybe it was because they first gave me Fentanyl and it didn’t help at all. They came back and said the CT scan looked fine and if I got worse or I started vomiting or got a fever to get back in there. As I was leaving they handed me a stack of papers which included my lab work, CT scan results, and a bunch of other information. That must be something new they are doing because I always have to ask for copies of my lab work and they’ve never listed everything they gave me and the results of the CT scan. The next day, yesterday, I was looking at all my results and it said diagnosis of CT Scan: prominent mesenteric lymph nodes which could be a manifestation of mesenteric adenitis. They didn’t say one word about that and I’ve seen that on previous CT scans that I requested copies of and no one has ever said a word about it. I googled it and couldn’t believe it’s never been mentioned before. It could just be from an infection in the abdomen or a list of other things, most nothing to worry much about, but there were some worrisome things it could be caused from such as some cancers. It did say that it is often mistaken for appendicitis because it causes a lot of the same symptoms. I told them that it must be my adhesions, since nothing showed up on the CT Scan and the doctor said yes, it probably is. He said the adhesions could have been stuck to my intestines or abdominal wall and maybe they broke loose. B.S. and no mention of this other thing. Now, I don’t know if I’ve had these lymph nodes in my abdomen enlarged for a long time or if I’ve had them enlarged on several different occasions since it’s mentioned in a bunch of my other records. You really do just have to be your own advocate. Now I have to call my GI doctor on Monday and talk to them about this and get some answers. I wouldn’t be as concerned if this was just the first time I saw this in my records. I would just assume, ok it’s just an infection, but now I just have one more thing to worry about and my doctor will probably just say it’s nothing to worry about. Easy for them to say. I’ve got a severe case of fibro fog today so I hope this even makes any sense at all. I really hadn’t planned on writing a novel. LOL Have a “good” day. I look forward to talking with you some more.
        Tammy:)

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      • Yes, absolutely keep records of everything! I have a big 3 ring binder that I have only just begun to fill because I recently realized what a disorganized mess I have been about that. That’s great that the ER gave you everything! I wish they did that here! I just spent the morning in the ER with my grandmother, and they didn’t give her anything! (They were horrible by the way, I will NOT be back to that hospital! I spent all morning fighting doctors to get her respect and appropriate care! She’s 87 years old!)

        I HATE when they tell you everything is fine, and then when you read it for yourself it ISNT! My issue lately has been with bloodwork ranges, ie. they will say that everything is “fine”, when my number is at the very bottom of the “normal” range. Drives me nuts!

        Good luck with that issue, I hope the pain is better today at least! And I hope your GI doctor had some answers for you!

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      • The ER didn’t give your grandmother anything? Wow! That is horrible. I hate it when they do that. I’m very sorry to hear that. I sure hope she has gotten some relief some how. Most definitely, do NOT ever go back there again.
        I’ve been having trouble with my WBC. It keeps getting low and it was dangerously low there for awhile. I just had it checked at my primary care doctor a few weeks ago and it was good, again, it was like 6.5 ( normal range is 4.0-11.0 and Thursday in the ER it was back down, again, to 4.2, so it’s getting really close to being below normal. At one point they said if they couldn’t get my number back up into the normal range that they would have to do a bone marrow biopsy. Scary. If it’s going to keep going down below normal, I wish they would just go ahead and do the biopsy to make sure I don’t have cancer. They like to always act like everything is no big deal, to not scare you, but what they don’t know is I’m a nurse and I have a lot of medical knowledge and I know what they are looking for when your WBC is low and they are doing a bone marrow biopsy. Now, I haven’t worked as a nurse for many, many years because I wanted to stay home and raise our 4 children, myself, and of course let’s face it childcare for 4 kids isn’t even affordable. I would have been working just to pay childcare.
        I don’t know why you aren’t showing up in my reader because I went to blogs I follow and I was going to set it to send me an email every time you did a new post, but I can’t find you and when I enter your URL address, it says you are already following this blog, duh! But, why your not showing up I don’t know? I’ve looked under your blog name of Chronically Me and by Addiemarie41.wordpress.com and you are nowhere to be found. Should I be looking under something different or do you know why you wouldn’t be showing up in my blogs I follow? I’m kind of ignorant with this computer stuff.

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      • The ER sent her home (after being totally rude and disrespectful to her!) with a Medrol dose pack, an appointment to see an orthopedist on Monday and home health nurses scheduled to come starting tomorrow. It’s better than nothing but I’m still not thrilled with the care she got, and she only got that much because I FOUGHT them tooth and nail. :(. In 5 hours in the ER she received nothing for pain, no IV, just an X-ray. She is home now with a member of my family with her around the clock for the foreseeable future; Tylenol had helped the pain a little, but we still don’t know exactly what is wrong and she is still basically unable to walk or move much.

        If I ever get my health to a place where I can handle it I really want to go to nursing school…some day!

        Someone else told me they have basically the same issue with my blog today, I am trying to figure out what the heck is wrong with it! Sorry! I’m sort of new to WordPress…lol.

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