Aw, I get it. Do you ask for a cuddle? But I know how it is, sometimes we just want & need not to have to ask. He sounds like a star in other ways though.
As for disbelievers, I have been known to tell them to kiss my A$$.
The disbelievers don’t bother me as much as the people close to me just not caring. Those I am getting tired of quickly.
I’ve been on this journey since 2005 (diagnosed and treated since 2012). Thought I was doing really well. People make plans and PsA laughs.
I haven’t felt particularly well the last three weeks. Saw the rheumy last week and had my usual blood work. My SED rate (a good marker for me) is high. I need some oomph for Humira; said oomph in the form of Leflunomide. That and an emergency trip to the ophthalmologist (left eye floater is bigger but I’m okay) mean I jumped right back on the crazy train.
I caused part of the high SED rate. After I had the flu the entire month of January and then it took until March to get me diagnosed and treated for asthma and sleep apnea, I thought the heck with it and quit watching my sugar intake. Then it took another couple of months of messing around with asthma meds to get it to begin to be controlled (Spiriva and Singulair are the magic combo for me) and me to quit coughing up a lung on the regular. I mean my boss (you read that right) said she was concerned about me coughing so much.
Sooo, on Tuesday, I started watching my sugar again. I spewed (twice) to people who care. I cried a bit. Talked to my husband quite a bit. Got out—orally and in written form—exactly why I’m in my special compartment on said train.
I took yesterday off. I slept all morning and part of the afternoon. I watched Law and Order (love me some Sam Waterston) rereruns. I took my first dose of Leflunomide (and didn’t turn into Mr. Hyde!). Took a long, hot shower. Did my regular weekly injection of Humira. My husband fed me homemade beef broccoli for dinner. He told me he got tickets for us to see Vince Gill for my birthday (third year in a row!) We watched three of the last episodes of the West Wing.
I feel better today. I’m not there yet but I do believe I see the station where I hope I can jump off the crazy train. Until the next time.
No one mentioned that their husband or wife don’t seem to understand how you feel. My husband doesn’t understand how I feel. I am going to leave him.
I found a site called “Arthitis Foundation” I have problems with my eyes. No one has mentioned that. I should say they do mention it but that is all. Did you know it is called uveitis and can be treated.
Sadly, quite a few folks have mentioned that their spouses don’t understand. And you might be interested in this discussion in another section of this site:
The uveitis does get an airing here from time to time too, and at least there are fairly straightforward ways to tackle that. Up by your avatar on the top right of the page, there’s a magnifying glass symbol, if you click on there, you’ll get a ‘search’ box and old discussions about uveitis will be listed if you type the word in.
I’m sorry things are difficult. If you’d like to share a bit more, please do. Good to hear from you.
Living in a community, you would think it would be full of caring people, but most get bothered when you mention it. Being chronic, I guess the subject gets old for them. One of my friends who I confide in, will want me to do something, then says and “don’t give me that _____ garbage!” But in a way it is nice, as it lets me know not to mention these problems to often… The administrator will see with me a pained face, and ask what the problem is? I remind him that I do not feel well, he says “are you sick?” Well, ya, I have a autoimmune disease" for the 50th time…
I am at a retreat, so we are taking turns working at the front desk, I mentioned I could not do mornings, the scheduler put me on the schedule for 8:30am, had to go back and tell him this was not negotiable, so then the administrator said how about 10:30 am? Some of you can relate, after not sleeping all night, I barely make it to that time. Then have the added problem of the office having mold!
So I really don’t mention much anymore…
Hi caryle, I’m sorry to hear your husband doesn’t understand. Many on this forum do have that experience, and it can range from your partner just not knowing how to help, through being thoughtless and often hurtful by accident, to in rare cases, using it as an emotional and psychological weapon. If you feel that you are near the worst end of this, then it is highly likely that leaving will greatly drop your stress levels in the long run, and immensely improve your life. If not, use the search tools Sybil has recommended, there are some good suggestions on how to communicate. You could also google the spoon theory.
Only you can know the situation you are in, but many people find it helpful to talk through it with a counsellor, initially by yourself, to help get perspective on the situation. Take care, and remember there will always be people here who do understand.
Thanks for your response. It halped me. I have always kept quite about my health. But it helps to have people that knows what I’m dealing with. I will talk to a therapist. Just so you know something about me. I am 79 years old and was diagnosed with psoriatic arthritis almost 2 years ago. I had to give up my job April 20.
Wow Caryle, what a big achievement to still be working until you are 79! I’m only 43 and some days feel like its already time to retire…
The only reason that I left my job is because I took more time off than I should have. That is due to the psoriatic arthritis. I couldn’t keep doing it.
I would like to find a Joni can do.
Have to make a correction, I have to find a job.
Great attitude, @caryle, to want to continue working! I hope you find a job—maybe part-time work would be a better fit at this time?
I’m 65 and work part-time…I could retire now, but I really enjoy my job for the most part and my plan is to hold off retirement until the end of 2019. However, I sure have my doubts about that!!! It seems like such a HUGE life change! Although I know I’ll have plenty to do despite not having a job, as there are so many things I’ve been putting off for lack of time…
I hope you get some relief for your PsA—are you on a biologic? If not, that is something that could make a big difference in how you feel!
I started on hikers, that worked for a little while. Than my doctor put me on Embrel which worked for quite awhile. I was on the emergency room about once a month for pain. The gave me prednisone than I called my doctor, he gave me a lower does. When I saw him again he put me on methotrexate, no more pain like before. But my writing is now terrible and have trouble with my eyes.
Correction started on humera
Mostly I don’t actually care about being believed or not. My family are supportive & so is my fiancé. I don’t usually tell other people because iv not really came to terms with it myself yet. Any kind of chronic illness is something we would all struggle to totally appreciate if we didn’t suffer from it. It’s one of those… you had to be there… type things. To that end I try mot to be too hard on people.
So I went nuclear with this, went around my counselor/supervisor to ask the “HR” people if this is a good idea, being exposed to mold with a autoimmune disease, and taking Remicade infusions. I suggested getting the Rheumy involved, since their office also does allergy. The main question posed, “were they okay with potentially cancelling out the $5k infusion for a $500 moldy carpet?”
Mentioned to them how I understand that a autoimmune chronic disease gets old with people, they get tired of hearing about it, or downplay it, if they see you better some of the time. Of course they rarely see me in a flare, because I am in my room crashed… I made it all confidential, so if they talk to him without my knowledge, (as they are want to do) I will have a paper trail, regarding future situations. They have been very helpful, so hopefully we will get this sorted.
Good for you Jon.
Hey y’all. I haven’t posted or anything in about a month. It’s been a bad busy month for me. It got worse last night. I’m found out that my daughter in law who l had thought somewhat believed and understood, that she doesn’t. Said I’m a hypochondriac and everything is in my head. I’m heart broken about it. Just devastated. I didn’t sleep well last night and had to get up rather early because I was hurting after just laying there for too long I guess. My next rheumatologist appointment is tomorrow afternoon. I’m praying he’ll give me a diagnosis to prove to her and others that I do have an autoimmune disease that’s wrecking havoc on my body.
Rheumy did not give much support, they said that mold is not known to cause any autoimmune problems, “if it bothers you, don’t go into the room”. Such support… I read a medical study that they found traces of mold in the urine of 95% of the Chronic Fatigue patients, but nothing to see here… I will just show up with a respirator!
Mould certainly flares asthma and often ignites it in patients who never had asthma before too if they end up in particularly mouldy places…