I have questions for my blog friends

jae001's picture

JaeI try to write very positive things on my blog. I figure that I can reach out to others to let them know that we can live our dreams. I really never talk about my issues and concerns. I do have concerns about getting older and what kind of complications I will have that are different than other aging adults. So now for my questions…

1.       For the women. Do you find that your menstrual cycle changed because of HIV/AIDS? The reason I ask is because I can’t get a straight answer from any provider GYN or Primary Dr. Not sure if it is an aging thing or is it related to HIV.

2.       Do you find yourself spending more money on cosmetic cover-up (Cosmetic surgery and/ or others)? If so, what have you tried? What works and what doesn’t? My insurance covers face filler so I have done this. I think I would pay for it even if it didn’t.

3.       Since your diagnosis, have you started working out or eating differently? If so can you explain how and did you do research prior?

4.       Since your diagnosis, have you gone to therapy? If so, how has this worked for you? Or not?

5.       Has anyone had more joint / hip issues? I met a young man a while ago that had to have a hip replacement and his doctor said it was related to his HIV. I cannot find any information to support this. Has anyone experienced this?

6.       I know that hyperlipidemia can be related to medications… I am wondering, has anyone had to deal with common issues that come with aging at an earlier age.  (with or without a family history): Heart conditions (hypertension, vascular disease, congestive heart failure, high blood pressure and coronary artery disease) Dementia, including Alzheimer's disease, Depression, Arthritis, Osteoporosis, Diabetes, Breathing problems, Frequent falls, which can lead to fractures, Parkinson's disease, Cancer (breast, cervical, uterine, ovarian), Eye problems (cataracts, glaucoma, Macular Degeneration). If so has your doctor related it to your diagnosis or medications?

I thought maybe opening my blogging up to get conversations going. I don’t just want to talk at people. I want to talk with them. I want to know what your concerns are. I want to let you know what my concerns are. Maybe we can help each other.

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hating life's picture

Stressed depressed and ser no purpose in a victim of rape I caught the severe flu like symptoms I skiped nineteen periods. I have had herpetic oral thrush I have no body and here's the kicker I can't get meds because the bastard gave me a new strain the test do nt pick it up at all. I'm loosing my mind and spirit why me?

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Jiji's picture

I am new to HIV.I found out almost a year ago.My question is how do I get over the feeling of worthless.I can not stop crying and sometimes I just feel I will never be happy again.I contracted HIV from my husband who has already started a new relationship.Did anyone feel helpless .

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ellejay's picture

Hi Jiji

It gets better! I was diagnosed 3 years ago so those feelings are still hovering. I work as a complementary therapist/teacher and I felt such a dirty, worthless pile of poo that I thought I had to stop doing everything that made me feel valued. With the support (this is the important bit) of friends and an art therapist I have slowly been able to wipe off that feeling. It was dirty, sticky and heavy. I guess the message for me was 'you are only as helpless as you let yourself be'. Somehow I kept on doing what I'd been doing before, but carrying a terrible feeling of guilt, shame and pretense. 3 years later and I still stigmatize myself (learning to not do that) but I can also see that I'm just as effective and 'worthfull' as I ever was. Does anyone know why we feel we have to have worth in the first place?
Sadness, yes it is sad. I still sometimes feel very sad but the sadness comes and goes like summer showers. I've learned to look for things which give me joy and if none happen by, then I try to create some. It's a killer when your loved one has done this to you. It's a lot to come to terms with, could you find yourself a good counsellor?
You are not worthless. It will get better. Keep on posting there's lots of lovely women on this site to help you recover.

Big hugs

LJ

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Kampamba Millie's picture

I wish I could say that most of my health problems are because of HIV. Chances are, some health conditions I've developed over the years may be because of HIV but I put my HIV on a pedestal and I never blame it for anything! I have now lived with the virus for nearly 18 years. During this time, I have loved, lost, married, divorced- you know, all the normal stuff that people go through in life. I have also been ill a few times- TB, chest infections, STI's, anosmia,hypertension but the worst has been depression and mood swings. I have also noticed that my periods have become unpleasant- heavy, painful and the week leading up to my period is a nightmare. I feel ill, even bed ridden sometimes and it takes me long to recover by which time I'd be due for my next period so I'm constantly ill. It doesn't help much that I suffer from Fibromyalgia and chronic pain which may or may not have been caused by HIV but I guess I'll never know. I'm not too hang up on cosmetic stuff but I do feel lipodystrophy has affected in a bad way and as a result, has not helped my depression. I put on over 2 stone after I had my son 3 and half years ago but I have managed to shed a stone and a half of that in the last year and would like to lose more weight. Even after the weight loss, my tummy is still big and I hate it! I would have liposuction/tummy tuck if I had the money but I don't and that depresses me even more!

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Precious's picture

I have abdominal pains, sometimes I feel like I'm pregnant knowing exactly that I'm using a condom, I went through sonar, scaner, medications but nothing seems to work, I'm actually getting used to this feeling.

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katie06's picture

1. My menstrual cycle is shorter than it used to be. But I guess I just assumed that was related to aging. LOL – I’ve never brought it up to my ob-gyn.
2. I do not spend much money on cosmetics and have never tried any type of cosmetic procedure. But I’ve never experienced any type of facial wasting or anything that I thought may be HIV related. The only thing I’ve noticed is that I’m actually getting wrinkles – which I’m sure is simply age related.
3. I have not started eating differently or working out – although I should! However, I’m having weight loss surgery in about 2 months – so everything I know is about to change!
4. I have not been to therapy – but, again, I probably should! I tried once talking to my pastor about my marriage and when I said I was HIV positive, he looked at me like I was dying before his eyes. So I’m a little timid about announcing that I’m positive. For some reason, I have trouble trusting that confidentiality clause.
5. I have knee pain which I never had before. However, I think it’s more related to being overweight, than HIV. My husband, however, has a great deal of joint pain. He has had every test imaginable and they cannot seem to pinpoint the issue. Also, nothing seems to provide much relief. In my opinion, his is likely HIV related.
6. I’ve had to deal with cervical cancer, which was HIV related. Essentially, my immune system was not strong enough to fight off the cancerous cells and I’ve had to have them removed on several occasions. Starting HIV medication was suggested to help my immune system (which I did). Also, my doctor highly recommended I lose weight, simply to ward off some things like arthritis, heart disease, etc. He explained that the HIV drugs could accelerate my chances of acquiring such things and losing the weight would give me a better shot at not dealing with those things.

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ellejay's picture

Hi Jae

I've only been on meds for about 20 months. I was diagnosed very soon after I contracted the virus so it hasn't been running around my body for more than 3 years. I went through the menopause about 10 years ago so no help there.
* I have had repeated 'mild changes' in cervical smears since I went on drugs, notably none before. The gyny couldn't see anything conclusive during a follow up colposcopy, so I have to have test after test from now on. No comment from my consultant when I asked if it may be drug related - she just rolled her eyes - again.
* I have in the last 2 years (since I've been taking meds) developed 'drusen' (lipid deposits) on my retinas - can be a sign of early macular degeneration - again a non-committal response from my consultant.
* I have been vegetarian for about 40 years so my cholesterol was low but it started to rise with the meds. I have cut down on dairy, eat more fish, nuts and soya products. Plus I use 'Flora pro-active' margarine and milk which is supposed to be clinically proven to lower cholesterol. Levels have dropped now but I didn't have much of a problem in the first place.
* I have met other women with severe degeneration in spine and joints. Indeed one (34 years old) is half way through having every major joint in her body replaced. She claims it's because the medics didn't notice her inhaled steroids were incompatible with ritonavir. I believe she may be speaking with solicitors.
* I don't think I'm any more depressed than I used to be. Life has it's seasons and phases and so do I.
* I am beginning to get fuzzy sensations in my feet, this is one of my major concerns - that I may be developing periferal neuropathy. This would lead to movement problems, balance, posture etc and subsequent falls and breaks. When I ran this past one of my 'team' he said it was probably the HIV. Frankly I don't believe him.

There appears to be a lots of 'fudging' around what causes what. My impression is that if they can blame things on the virus they will rather than admit the drugs are causing harm. That would open up a can of expensive worms! My feelings are; stay alert, keep asking questions even when they groan, listen to your body and live as well as you can. Good luck with your research.

Best wishes and good energy sister

LJ x

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Lynn Priddy's picture

Hi Jae,

I was diagnosed 3 years ago and probably had had HIV for the past 10 years or so according to my HIV Specialist. Within 4 weeks of beginning treatment (Atripla) I was undectable and my CD4 count had begun to rise. I don't remember what my viral load was upon my diagnosis as I was in a state of shock but my CD4 count was right at 400. I did have to come off of Atripla about - months later because of the bad dreams I was having and lack of being able to rest. I do not remember what I went to next.

One thing I do know is that I am having some real issues with my memory. This has been very upsetting to me as it impacts my work as well as my family life. I am a registered nurse who still works full time in nursing although I do not have direct patient care. I do all my nursing over the telephone and there are changes sent via email daily. Not to mention trying to learn all the new computer programs that we utilize. Lots of times, it is said that this is occurring due to aging. I just turned 59 in June.

During the time leading up to my diagnosis my period had given me a very difficult time. I also had severe fibroids which were about the size of a 5 month pregnancy. I had just begun not to have a period at the time of diagnosis. I finally went into menopause at 57. Needless to say, this was a godsend and thankfully have not had any issues nor abnormal paps since my diagnosis.

I have had some issues which have worsened since my diagnosis and since starting treatment I have been diagnosed with Chronic Kidney Disease. My GFR has gone from ? to 55 about a year after starting treatment to 36 recently. My creatinine rose to 1.6 a few weeks ago from a baseline of 1.0-1.2 We are still monitoring my medis ( I take Isentress and Epzicom) I had gotten very sick in July and this impacted me all around. My labs are finally near normal now and I am feeling much better.

Hypertension has worsened since my diagnosis. I am now on 3 blood pressure medications. The last one was added in the past 4 months. My job is very stressful, have had many personal changes recently as well as have been sick. I ended up having to miss 2 weeks of work and until July, had not missed a day related to my HIV. I have enrolled in the SPRINT Study to see what can be done for my blood pressure. I have now been in the study for 18 months and my blood pressure keeps going up.

I have also put on 50 pounds in the past 18 months. I have begun being better to myself and have lost some of that extra weight. This has been especially upsetting because in 2008 I had a gastric sleeve and lost 186 pounds and kept it off for over 3 and 1/2 years. I lost it real bad after my diagnosis and had a period of time that I thought I was going to die in short order. I returned to what I had used in the past to comfort me; food. But, it did not make me feel good about the way my body looked. I was already having issues because of all the loose, flabby skin after having lost the weight in the beginning but what I began to experience was a shift in how my body stored this new fat storage. I keep asking about lipodystrophy as this is so different. No conclusive answers at present.

I developed early onset macular degeneration in my 40's. My vision has begun to change, a lot of it due to normal aging and some due to my macular degeneration. I just finished being in the second phase of a study with AREDS. I was in this study for 5 years and my vision did well. I go for a visit with my retinal specialist on Friday. It will be interesting to see what changes are showing.

I have been in therapy since my diagnosis. Mostly to do with me just accepting my diagnosis and forgiving myself. I have finally come to terms with this diagnosis and like you Jae do not find being open about my diagnosis very good for me. Me, I would love just to tell the whole world, but emotionally I am not certain I could handle the stigma that comes with this diagnosis. I have not been in therapy for over a year. I do take some medication for depression but I had this prior to my diagnosis. A change in my medication seems to have helped me tremendously. I do have great dear friends and family who support me unconditionally. I am very thankful for each one of them and the blessings they bring to my life.

I do have joint pain; especially in my hips, knees, and feet. I had suffered extensive orthopedic injuries many years ago and ended up with a fusion of my foot on the right side; this had to be done 3 additional times to the first fusion and a ruptured Achilles tendon on the left side. Limited movement has been something I have dealt with for some time now but after losing the weight I did, it seemed to have gotten much better. It is not back again.

So, what I find is that none of my specialists; nephrologist, endocrinologist, HIV specialist, PCP, or retinal specialist can not give me clear answers to my questions. For all I have going on with me now, I do feel much better than I did in my forties.

I do wish there was more information so that we would know what to expect but we are really charting new waters as those with HIV are living longer and likely to die from causes other than their HIV,

On a different note, have you taken your state boards yet and have you begun nursing? Wishing you the best as you go forward and love to read your blogs. .

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janelle's picture

I have been an advocate and educator since the early 90s. Recently I was approached with a question of whether HIV meds could cause Erectile dysfunction(ED). Havent heard of issue with this before, do you have any info, I would def appreciate it.

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